There was a big controversy on the show, as we all have probably heard about in the news, with the MMR (Measles, Mumps, Rubella) vaccine. There is a question as to whether or not the vaccine is directly related to the onset of autism. Some parents were clear on their stance–that it was related, and that the vaccine caused autism.

When this story originally broke out in 1998 after a study done by Dr. Wakefield who suggested a link between ASD and the MMR vaccine, parents became frantic—they no longer wanted their children to have the MMR vaccine. Wakefield was later refuted; his study made suggestions, but there were no scientific studies done. Half a dozen or so other researchers have also made the suggestion, but without and scientific research. So, currently, there is no scientific evidence that MMR and ASD are linked. I might also add that Dr. Wakefield’s medical license was revoked and his study was retracted in 2010.

I understand people need someone or something to blame. I don’t think it’s right to blame without doing your research. I would bet that the parents who believe their child ‘got’ autism because of the vaccination haven’t done their research. Do they believe what they hear in the 30 second sound bite on the news? Probably.

This is a prime example of people talking out of their you-know-what. Just because you hear a piece of information from a so-called valuable resource (i.e. magazine articles, the news, etc.) doesn’t mean it’s true. What these reporters are lacking is context. Sure the quote may be accurate, but is the information? If words are taken out of context, they mean almost nothing. We cannot look at one side of the story and claim to know what is ‘right’ about the story. We need to start looking at different perspectives. Don’t listen to a doctor who is spewing out facts that autism isn’t linked to vaccinations–they might be funded through pharmaceutical companies that supply the vaccine. Then, of course those doctors would be reading only information that the vaccine isn’t related to ASD–I mean, would the pharmaceutical companies really want people believing that their product causes ASD? No, of course not; they wouldn’t make any money that way. If you look at one side of a story such as the pharmaceutical perspective, then ASD is not caused by vaccines.

Flip that coin and talk to an environmentalist. A parent. A child psychiatrist. Everyone has their own opinion on the cause of ASD. Yes, it is an opinion. Each of us wants to believe that our thoughts on the subject are fact. Who wants to be wrong? No one. And some, who are passionate on this subject, or any other for that matter, are unwilling to hear another side of the story because they convinced themselves that they are right.

There are plenty of examples I could have used to demonstrate the point that every story contains several sides. How do we decide who is right or wrong? Does science dictate that? Maybe. But who funds the scientists? If a drug company gave me a million dollars to ‘research’ the physical effects of their drug on people, do you think they would give me the money if I found out that they had spent billions of dollars and man-hours on a drug that was ineffective? I’m not saying that drug companies are bad. What I think we need to do is have a critical eye on who supplies our information. Are you willing to accept a ‘rumor’ or facts, data, and evidence. There’s no right or wrong way to this matter. Each person has a different perspective based on everything that makes us unique.

Is there a solution to these disagreements? What about the Autism debate? I say, find out everything you can about every side of the story before you come up with your own conclusions about the ’cause’ of something. Most times, the cause is irrelevant in our immediate lives because we still have to live with the consequences. But if we investigate connections we might have insight into preventable measures.

What do you think about the Autism/ MMR Vaccine debate? Where do you stand?

Our experience began 48 hours prior to our flight, as I reconfirmed our reservation. As the customer service representative rattled off our flight numbers and times, I made sure to let her know that we were passengers with disabilities and we would require wheelchairs at each point in the trip, from first arrival at the airport to connecting flights, as well as the destination airport. I was assured that our needs were noted, and that there would be wheelchairs available at the airports.

So far, so good.  All was proceeding smoothly, although I will admit I was nervous about flying with them simply because I was familiar with Ms. Wilcox’s story. I let the flight attendant know that we would require wheelchairs upon deplaning, and she said she would see to getting them to us.

Even after all this advance planning, it still took about 30 minutes to get wheelchairs to the tarmac so that my husband and I could deplane.  The delay did not surprise me, as I knew that wheelchair service at airports is contracted out. This means that even though you contact the airline to discuss your needs as a traveler with a disability, the person helping you is not an employee of the airline but rather an employee of the subcontracting company engaged by the airport to provide services to travelers with disabilities. For instance, at my nearest airport in Norfolk, Virginia, the disability service company is named Huntleigh. In Miami International in Florida, the company is Eulen America.

In all my 10 years of flying, I have yet to see a kiosk open to deal with customer complaints regarding these disability service companies. So, the best I have been able to determine is that there is very little recourse available to the consumer should they have reason to lodge a complaint. Once we returned home, I conducted an internet search to see what I could find out about these disability service companies.  I found Eulen America does have a standard  ‘Contact Us’ page on their website where a traveler may access information to  email, write or call with an issue, but suffice it to say, any response may be slow in coming.

Unfortunately, the delay meant that we would have to forgo stopping by any kiosks for breakfast, as had been our plan. I am always hesitant to pack snacks, as I am unsure whether they would make it through the screening process unscathed. There’s only so much room in one’s handbag, and by the time I put in necessary medicines, passport and boarding passes, there’s little space left for so much as a granola bar. Sigh. I know … I need a bigger purse, but it might strangle me, as it is one of several things I’m usually holding on to at the airport. Let’s see, I’m seated in the airport wheelchair with my cross body purse around my neck? Check. Carryon positioned on top of purse? Check. Walker folded and resting against my knees as I attempt to keep my feet on the footrests? Check.  And then I am asked for my boarding pass. Aaargh…

Our return trip was made eventful by a touch of Montezuma’s revenge. Tip: Don’t drink the water in St. Croix. Don’t even chew ice cubes.

Ms. Wilcox experience was at the forefront of my mind as I prepared to board the flight home. Fortunately, the “first on, last off” policy worked in my favor as I was able to inform the flight attendant of my needs immediately upon boarding, and she discreetly assisted me to the nearest available facility each time it was necessary. She even made a point to ask if she needed to walk in front of or behind me, to better assist me should my balance shift as I traversed the cabin aisle. My experience with American Airlines was much different than that of Ms. Wilcox, I’m happy to say.

What do you feel would improve the experience of travelers with disabilities? Is it the airlines or the disability services companies that we should be directing attention towards to improve the experience of travelers with disabilities?

Excuse me? I am right here – say hello – don’t worry I won’t bite you…

A metal chair with big wheels and bright shiny metal,
How does this person get in and out of the wheelchair?

Excuse me? Be friendly to me – I’m friendly like everyone else…

Parking in a disability spot – look, he can walk – why is he parking there?
Okay, so he can’t walk very fast – but should he have a disability spot?

Excuse me? I can’t manage stairs, among other things,
But I’m a good person…

Long white cane, tapping the pavement, back and forth,
Forward with determination – how can she get around without seeing?

Excuse me? A happy greeting from you would get you one back, too…

This guy is deformed, only with one hand, trying to get money
out of his wallet – can you believe how he’s taking forever
holding up the checkout lane?

Excuse me? Thank you for exercising your patience
as I try to do my best…

What do you see? Do you see the person – or do you
see the disability first?

Stick a pin in our finger, we all bleed the same – just like you;
When you see us, please exercise patience & gentleness,
Say hello & show compassion to anyone with a disability -

No matter what kind of disability it may be,
kindness will beget kindness…

Thank you.

Aaron Ruey
January 15, 2012
Copyright © 2012 Aaron Ruey

This was inspired by a comment I read about someone
who was being given a difficult time because they were
using a cane – I hope you enjoyed it.

Different scenes take place such as Simon’s flashbacks before and after his disability, and other suffering moments that he has experienced. Using his imagination to express his feelings and memories, he creates an artwork — hung in a gallery — to let people see, share, and understand his invisible disability.

WHY AND HOW I MADE THE ANIMATION

I decided to make this short film in my last year of OCAD University as my Drawing & Painting thesis project. Many of my old artworks didn’t relate much to my personal self, and I eventually decided to share the troubles that I was having in the past with my invisible disability, as well as incorporating the experiences of others suffering from clinical depression. I was also taking some Integrated Media courses, in which I learned about editing, film, video, etc, and started to combine what I learned together with that from my Drawing/Painting programs to make a personal, message-driven animation project.?

I wanted to make a 2-dimensional classical style animation because I missed the old animated films by Walt Disney. Instead of drawing it in 3D or using a tablet and computer, I used the same old-style animation camera stand and light table equipment as Walt Disney. In this classical technique, a camera is hooked above a stand, aiming below at a translucent light box. Backgrounds and figure drawings are layered together on different sheets of paper, attached to the light box. Every frame movement is shot by a camera, after which the frame images are sent to a computer where they are put in order, ready to be tested and animated. I was taught how to use this equipment by the Toronto Animated Image Society; I learned frame-by-frame skills from Richard Williams’ book “The Animation Survival Kit”, as well as black film strip scratching technique from Norman McLaren.

Instead of depicting realistic figures, I chose to draw the characters in a simplified way, because I sometimes feel like I have trouble being independent as a grown up adult; it makes me feel like my left brain is still like an elementary student’s, trying to understand what grown ups are talking about with their complicated words. This animation also relates to my daydreaming right brain world.

Meet Jennifer Hardy, ILWAD member

Jennifer Hardy suffered a stroke when she was 14 years old, in 2000. Before her stroke, she achieved A grades in high school and wanted to pursue medical school or zoology. After her stroke, she had to relearn how to speak and write (in a household where her mother only spoke broken English), forgetting her mom’s name and basic words like “thumb”, as well as walk; she couldn’t travel long distances or exercise for three years while the blood clot shrank. She struggled to achieve passing grades, requiring constant help from her gracious friend and years of speech therapy. She developed symptoms of aphasia: difficulty in speaking, understanding, and paying attention. Her stroke also left her with complete half blindness in each eye.

She lost the logical left side of her brain that processed communication and critical thinking (required for doctors and zoologists – her goal), leaving her feeling overly depressed, isolated, alone, and not understood; she was teased and excluded from group work in school and lost friends because of her learning disability.

She was troubled with her aphasia and began to focus on developing her right brain and skills in visual art, eventually enrolling in and graduating from the Ontario College of Art and Design University, in Toronto, Canada . She majored in Drawing and Painting, also studying Integrated Media, creating the 2-dimensional classical animation “WSIM: What Suffering Inside Me” as her thesis project in her final year. The short film was screened at over a dozen film festivals in Canada and the U.S.A. She won 3 Best Film Awards and an Honourable Mention. With this short film she hopes to spread a message of awareness about aphasia and invisible disabilities.

(English Edited by Erik Chan)

We are happy to partner with Reelabilities and thank them kindly for their promotional support of ILWAD.

I do not believe she refused. I do not know of anyone with a disability who would refuse any assistance in using a restroom, especially if the need was dire, as Ms. Wilcox’s was. I believe she may have been forgotten by the flight attendant in the crush of people deplaning. In a MSNBC interview, Dawn states the airline attempted to make up for the inconvenience, and Ms. Wilcox was given a $100 flight voucher and a formal apology, but that no fresh clothing was provided for her to change into.

I have heard many comments on several websites, both expressing support to Ms. Wilcox, and some trying to discredit her.  Some commentators were more interested in trying to decide if her military uniform was appropriate attire for the event she was attending.  Some were saying that they were with her at the event and they could attest that she was loud or rude or otherwise was inappropriate, as if that somehow negates her embarrassment in the situation or makes her less worthy of receiving   timely assistance in that situation .

On the other hand, there were quite a few commentators who themselves had disabilities, and did what I consider to be an admirable job of explaining the usual airline protocol of “first on, last off” regarding passengers with disabilities Also there were many who outlined their own personal methods for dealing with such a situation as the one Ms. Wilcox experienced.  Basically, this boiled down to making sure that one’s carry-on suitcase contained all necessary items for cleaning up from and/or preventing such an incident in the first place. In reading some of the comments on the websites I visited, it strikes me that many of the commentators seem to have missed the point entirely.

It doesn’t matter whether she was wearing her uniform at an appropriate place and time or not. It shouldn’t matter if she was loud or rude or not. She was a human being in a situation which she asked for assistance in preventing, and she was denied timely assistance.  We are all human. Any one of us, with disabilities or without, may one day find ourselves caught short and embarrassed, no matter how well we plan.

While I agree, it is always best to be prepared in case of emergency; sometimes even the most careful plans can be derailed. I experienced a similar situation in an airport when, as I was traveling alone, I was left in a straight-backed chair with locked wheels. Though I wanted to push myself, the chair’s wheels were too small and too low to the ground for me to do so.

I did not leave the chair to search for a restroom myself, as I was unable to carry my bag and maneuver my walker at the same time. And even if I could have done so, I had no guarantee that the chair would be where I left it when I returned, as I had seen airport personnel gather up empty wheelchairs chairs at other airports…without checking to see if the former occupants would be returning. Since I was still only halfway to my gate at this point and would need the chair to continue my journey or else miss the flight, I saw no alternative but to wait until I could catch the attention of another airport employee. By this time, I was in such intense pain, I could barely sit. I had needed to use a restroom for six hours by this time.

Thankfully, I was able to avert a crisis when another employee noticed my distress and worked quickly to assist me. But my experience could easily have gone the other way.

I feel that better training is needed, both for airport and airline staff.  It doesn’t take much to ask a passenger with disabilities “How may I help you to our restroom?” once a need is expressed.  From personal experience, I can attest that this vital question is not often broached by staff at any point.

Persons with disabilities also need to self-advocate for needs as they arise, but how much self-advocacy can one accomplish if we have such a difficult time catching the attention of those who can help?  As the title of Nancy Mairs book, Waist High in the World suggests, one is already at a disadvantage when sitting down, as one is less likely to be as easily seen or paid attention to.

Dear readers…your thoughts, please.

Another odd thing happened at the end of the conversation (I had deja vu from my first complaint); once again, the woman asked me about my disability, “Are you legally blind? I don’t think I asked you that before.” I proceeded to inform her that, actually, she had asked me that question in our very first conversation. See, in our first talk she waited until the end of the conversation to ask it. I reminded her of her question, “Was it a man or a woman driving the bus?” to which I replied, “I think it was a man, but I couldn’t really tell.” She then retorted with, “I thought you said you were blind.” After I reminded her of our conversation, she apparently looked at the screen and said, “Oh yes, I see that noted here.”

After this call, I was livid; I talked to some of the folks here at disABILITY LINK and got their views on the matter and advice on what my next course of action should be. I completely forgot to bring up the white cane law or the fact that I had the crosswalk signal.  Hindsight, regardless of how cliché the saying is, this situation was definitely 20/20 clear. I did get the opportunity to bring both of these facts up when the customer service agent called me a second time to let me know that the superintendent (no name, no description of what exactly they are the superintendent of, just the ominous title) would be calling me today to discuss this matter. She further informed me that looking at the tape wouldn’t do any good because it wouldn’t show what was occurred on the outside of the bus.

So now I wait for another response from MARTA.  Hopefully, this one will come sooner than forty-seven days after they told me they would get back with me.

This incident took place at 5:50 in the evening so the customer service office was closed.  I wrote my notes down and decided to give them a call the following morning. I had a pretty good experience with relaying my situation to the agent, right up until the end.  I informed her I was visually impaired, I use a cane and that the bus actually sped up to turn left in front of me.  And then this exchange took place.

“Was it a man or a woman driving the bus?” the agent asks.

“I think it was a man, I couldn’t really make it out.”

“What makes you think that, sir?”

“The outline looked like a man, I couldn’t really tell any other details.”

“I thought you said you were blind.”

I was shocked that she would say something like that. It makes the interaction beforehand seem like a set up.  I informed her that I was not in the mood to discuss the meaning of blindness with her and wanted to finish this report.  She told me that someone would be in contact with me regarding this matter in seven to ten business days.

Cut to about three weeks later: I still haven’t heard from MARTA and decided to follow up on my own. So I call customer service, give them the reference number for the complaint, and ask what is being done about it. This call took place on November 8^th, I spoke with the same woman I filed the initial complaint with; she informed me that it had been sent to the superintendent’s office and that she was going to put me on hold and call over there. After a few minutes on hold, she said she left a message and would have to get back to me later that afternoon; I agreed to this and hung up. The problem is—she never called. So, the next day I called back to talk to a gentleman who leaves a message with the initial woman, who calls me back that afternoon and leaves a message saying she’s still waiting on the Superintendent to call her back. So I decide to wait on a response.

On November 18^th, I decide to follow up with customer service, yet again. I speak with a customer service agent who tells me that there is still no word on my initial complaint (which he stated was sent to the superintendent on the 11^th of November) and asks if I had filled out a complaint with the risk management office since the bus hit me.  I said that nobody had informed me of that option before this. I also requested a copy of my initial report, since that was also never offered. The agent tells me I have to actually come to the physical building to pick that up, which worked out fine since I was only working a half-day and I live beside the headquarters building. After filing my report with risk management, I go to the MARTA headquarters building at Lindbergh Center.

Little did I know to what mess I was to wade. I went to the front desk and was directed to a public phone. I was then, directed to customer service, where they would bring the report down. After waiting for ten minutes on the phone, I was told by a customer service representative that they couldn’t print that out today and I would have to go through the legal department. I was then transferred to the legal department, where I was told it would take 3-5 days to print. This was something that could have easily been pulled up on a computer, a statement that I was told. While waiting on the person from the legal department to come down, I spoke with the ADA Coordinator for MARTA, who happened to be in the lobby at the time. She had now taken my information and will supposedly get back with me.  So I wait.

On Tuesday of the following week, I received an e-mail with the report I filed. It was after looking at this report that I recalled the woman at customer service telling me my complaint had been sent to the superintendent on the 11^th of November. In actuality, I called on the 8^th (3 days earlier) and the woman claimed to have called and left a message regarding this report. How could she have left a message when it hadn’t yet been sent?

MARTA has handled, and continues to handle this situation, horribly. I feel as if they are trying to give me the run around so that I just drop the matter and walk away.  I don’t think they are handling the situation with the seriousness that it deserves.  Am I being paranoid? Do you see any alternatives for action? Have you had a similar experience?

I’ve been struggling with dealing with MARTA for the last month. This whole situation is a mess. Feel free to look at my experience.  Feedback is welcome.  I’m working with Ken and Bernard here in our office to try to get some kind of answers from MARTA regarding this situation. Also, feel free to share. Thanks!

Now, there are those that have fallen out of their wheelchair and then there is me; the self proclaimed fall-aficionado. I am a fall expert and have taken the plunge so many times that I have probably earned my stunt double license and could be working on Hollywood movie sets.

I could write a full novel on the multitude of ways a human being can fall. I have fallen on hard surfaces and soft ones, in private and in public, at night and during the day. I have toppled forward, sideways and backwards. If there was a way to fall upwards, I would have been the first human being to conquer that incredible feat. Yes, I have even managed to collapse to the cold, wet tile floor while buck-naked and soapy in the shower of my college dorm. Luckily, I was able to hoist myself back into my shower chair with the help of my roommate and friend and avoid the humiliation of an attractive young firefighter seeing my naked behind.

Over my many years of tumbling, I have pondered two possible theories as to why I suffer from a severe affliction to falling. Either I have been blessed with an extreme case of clumsiness or I have an abounding adventurous spirit in which I have no conception of fear. I like to think the real reason is the latter, but I must shamefully admit that I have always been a little bit of a klutz.

I lost my “fall” virginity three months to the day after suffering my spinal cord injury.  Although I had just suffered this devastating injury, I was still the same 12 year old girl with an outgoing personality and a fearless attitude. I was a warrior in physical therapy wanting to do anything and everything to better my condition. I would push myself to the limit, sometimes to the disagreement of Jen, my physical therapist. Jen would often compare me to the Energizer Bunny; I would go go go until I collapsed from utter exhaustion. This would become both an advantage and detriment to my physical therapy process. Although, 14 years later I can say it proved to be more of a pro than a con.

The week of my fall I had accomplished quite a lot and became incredibly cocky with my increased strength. I achieved the all too important milestone of being able to transfer myself from bed to chair. Anyone who is paralyzed knows this is a vital step in acquiring complete independence. Let’s just say I thought I was the best thing since sliced bread after accomplishing this important feat. Never settling and feeling completely satisfied with my achievements, I always challenge myself to better my previous accomplishment. If you looked up perfectionist in the dictionary, you would see my picture. I couldn’t just settle for only one victory that day, I HAD to do better!  Can you just envision my stubbornness and competitive spirit rearing its ugly head?  I decided I wanted to increase the height from which I transferred; going from a lower mat to a higher chair. Although my physical therapist strongly tried to dissuade me from this lofty endeavor, my intense tenacity tuned out her plea.

No one could convince me that this feat was a little too premature for my strength level. Isn’t it a karmic rule that something is bound to happen when one becomes too proud and full of themselves? Well, Karma came back and bit me right in the pants. Yes folks, while feeling all confident in my new superb transfer skills, my fatigued arm slipped on the mat and I plummeted to the linoleum floor. It was as if I had belly flopped into a pool, only instead of making a splash into refreshing water, I made a huge SPLAT on the cold, hard, marble floor. I landed on my stomach and resembled a squished daddy long leg spider, with my limbs facing every direction. To further my embarrassment the therapy gym was especially crowded on this particular afternoon and as the shock of what just happened to me began to wear off, I lifted my head to see the entire gym staring at my sprawled, limp body.  With my booty in the air, my fellow gym goers got a pretty good view of my little mermaid underwear peeking out the top my sweatpants.  Remind me again why I had to wear those underwear on that particular day?  What a blow to my over confident 12-year-old ego. My therapist helped me back into my chair and I wheeled back to my room with a pathetic “woe is me” expression that couldn’t be ignored. Anyone who passed me in the hallway probably thought to themselves, “There goes a Debbie Downer,” or “What a Negative Nancy she is”.

After feeling defeated and sulking over my mistake for awhile, I began to see the bright side of this embarrassing incident. This was not the end of the world; in fact this first fall signified a pivotal moment in both my physical and emotional recovery.  Yes I had fallen, but I was OK. I suddenly realized that I was not as fragile as I thought I was; this injury may have massively altered my life, but it had not broken me. In suffering this routine fall, I learned to not take things so seriously and to not be afraid of taking risks. Most importantly, I learned that you’re not a failure if you fall, you’re only a failure if you choose not to get back up. With each fall over the past 14 years, I have always chosen to get back up. This fall allowed me to become even more adventurous in trying new things. I have gone scuba diving in the ocean, zip lining through the mountains and kayaking over rapids. With each new experience I have become more confident and have learned that in order to live life to the fullest, you have to be open to participating in each new experience that comes your way, even if it scares you.

So don’t feel like a loser or a failure for falling many times in life, consider yourself a winner and a fighter for always getting back up. Don’t be afraid of trying new things, you can NEVER fail if you give it your all.

So, fellow wheelchair users, I want to hear your fall stories. Tell me about your most embarrassing fall, your most terrifying fall, your most humorous fall. Its amazing how one routine fall can provide so much perspective on life and can teach us so much.

I’m not going to deny the cathartic release that can be accomplished by occasionally putting your frustrations in print, whether just for yourself or to share with others, but it shouldn’t be the only focus. Aside from not being healthy only to dwell on the negative, we have to think about the impact we have on others. Many of the misery-filled posts are public and can easily be found by people that are looking for a peer, someone who has gone through/is going through a similar experience. If all they see are posts filled with doom and gloom, that is not going to be very encouraging. If, however, there are posts peppered in that more accurately reflect reality (good days vs. bad days, accomplishments, etc.) it could potentially help give some perspective and be, not to sound too optimistic, beneficial for the disability community.

I think it’s important to remember the moments that are uplifting in one’s day.  It could be a small victory, something new learned, or even just a new insight. These are the things that can help people connect and learn from one another. Keeping things in perspective will help keep us focused and might, in my opinion, even help stave off some depression.  Sharing is important; that sense of catharsis is important, but the toll that it can take on ourselves and our friends and supporters can be great. It’s easy to find bad things, but more rewarding to share the good ones.

What do you think?

I live in Atlanta and nothing says “Good Morning!” like having a street preacher try to pray away my “afflictions.”  In their eyes I’m dual diagnosis (blind and gay), one of them is less visible (no pun intended). I have a friend in the area that has similar experiences on the train. Living in the Bible belt with a disability can be a little annoying at times:

It always starts innocently enough:

“Hello!” says the stranger.

“Hi,” I reply.

“Lovely morning isn’t it?” they beam at me energetically.

I smile (not entirely in the mood to be talked to so early) and reply “Uh-huh.”

“Can I ask you a question?” they inquire.

I reply before thinking, “Sure” (and then the voice in my head screams, “NO! IT’S A SETUP!”)

“Is it okay if I pray for your disease?”

“I’m sorry, wha- no, I’d rather you didn’t. I’m fine.”

“God could make you better.”

“I’m good, I’ll pass. Thanks though.”

“Well, I’m going to pray for you anyway.”

“Please don’t.”

I can find the humor in these situations now. At first, I would just get annoyed at someone trying to spiritually “fix” me. This type of situation isn’t just limited to train rides either.  They could strike at anytime, anywhere. Enjoying a lovely lunch, sitting in the park enjoying the weather, getting a drink at a local bar, there are street preachers and proselytizers spring-loaded and ready to pounce like a cougar after its prey and exorcize the demons that have taken a hold of my eyesight. The speed with which they move is astounding, they can sense when you are distracted or vulnerable, and they break the sound barrier getting to you.

The second weekend in October was Gay Pride in Atlanta, a great time of general happiness and enjoying who I am in the world. With Pride, however, come the protesters. These protesters come from all over, many of which are locals. Sometimes, I get fun, awkward moments when a person that previously attempted to pray for me [for being gay] suddenly wanted to damn me, but still wanted my disability to go away. I am a paradox to many (not all) of them and I love it.

In all seriousness though, it’s important to keep in mind that not all of us with disabilities think we need to be healed or fixed.  This touches on a topic I brought up in a previous blog, that of the well-meaning bystander. After discovering the ILWAD site, I now have a nice response when I just want to end the discussion polite-ishly thanks to Scott: “Why would I want you to my pray disability away? I’m beautiful, not broken.”

Have you had a similar experience? Feel free to share below; I’d love to hear them!

An article I read recently on Snopes.com, delved into the claim that “The word handicap comes from ‘cap in hand’ and refers to the physically disabled’s need to subsist as beggars.” In reality, the word’s origins have nothing to do with that.  I was a little embarrassed to admit that I had always just accepted the false definition; I never bothered to look into the etymology.

The article on Snopes gave a great, and accurate accounting for the terms “handicap(ped)” and “cap in hand.” In the end the question as raised about why people would accept a definition that can be so easily disproved with the conclusion reached that: “it’s far easier to convince folks to eschew a word if it can be tied to an offensive image than it is to get them to swear off based on mere preference of something else.” I have to admit when I learned about the true origin of handicapped, and how it had nothing to do with the false image of the person with a disability begging for a handout with a cap in their hand, I was angry.  This kind of propaganda seems wrong; isn’t it better to enact change through presentation of preference rather than lies, even if it’s harder?

There are a number of programs out there to force language change including, one of the most well funded being, End the R Word. This is a great program that lays out why people have this preference of wanting to end the “R” word.  In particular, End the R Word lets people know that “retard” and “retarded” are offensive terms, and in one of the ad campaigns likens it to other derogatory racial words.  The ad campaigns are educational and informative and get people to think more closely about the words that come out of their mouths.  The one thing to remember is that changing the meaning of a word or trying to get its use frequency reduced takes time, and in the case of educational campaigns, money.

There is also the push for “people first language.” People first language is finally being accepted and used in government and you hear the non-people first language less often now, but it has taken a lot of effort and advocacy to accomplish this.

What are your thoughts on these subjects? Do you use or prefer people-first language? What do you think of the term “handicapped” and its origins? Does that matter anymore? Below are some useful links related to the topics I brought up above.

The new record would be a mix of rock, pop and urban, all with Lachi’s powerful, energetic voice at the fore. Lachi’s music is all about positivity, and the new material will move even further in that direction. “The goal is to make music, not merely about ex-boyfriends, unrequited love or partying at a club, but about inner-growth, realness, acceptance of one’s insecurities,” says Lachi. “The success of the campaign would allow us to bring this music to a global level as a polished, commercially viable product in order to bring back music with a message to the mainstream and infect the airwaves with something different, something heavy, something positive.” Incentives range from virtual hugs, to stress balls, to live Youtube performances of your favorite song “Lachified” to a trip to the studio where your snaps and claps will be recorded onto one of their tracks. Deadline for pledges is Friday, November 18. Support Lachi and Meridian Gold now!

http://www.kickstarter.com/projects/lachi/lachi-and-meridian-gold-full-length-album

Lachi has been tearing up the New York City club scene with her stirring blend of pop, rock and soul since she hit the stage in 2006. The multi-talented singer/songwriter and performer takes her music to the next level with “Bug Out,” the first single from her forthcoming album. The anthemic track is an affirmative celebration of life, driven by a soaring, instantly catchy chorus that exhorts listeners to “Bug out, have fun, live life, have love, bug out.” The eclectic track delivers a bright pop melody, driven by phat rock guitar, touches of funk and electro, and a hint of ska to showcase Lachi’s powerful vocals.

“I’d describe my music as a combination of rock and pop with a hint of soul and a bit of jazzy scatting. What’s most important is that the lyrics convey a message of truth, growth, poetry and reality. My influences are a grand ol’ mess of The Beatles, Radiohead, Bjork, Smashing Pumpkins, Lauryn Hill, Ella Fitzgerald, and Mozart.”

“As a legally blind, black female that, let’s face it, acts white, is a tomboy and acts like she’s not blind, I’ve encountered an intense amount of resistance from the world around me. From racism to colorism, to you ain’t black enough, to sexism and genderism, to ‘What a bitch, can’t you see that sign, it’s right there, what are you blind or stupid?’ All things that are said to me on a weekly, and often daily basis. My songs are all about growth, struggles, life-lessons, empowerment, poetry and strength. I don’t think the topics will change over time, as I have always been a person of the earth. If I have an intense experience, be it love or hate, it’s met with poetry, reality and depth. That’s my inspiration – my life.”

Lachi released And This is My Life in 2006, a jazzy album of songs and piano compositions. In 2008, she got a band together and made the Ugly Beautiful EP. Her second album, Lachi, came out on a small indie label last year. ‘Bug Out’ was released on September 17, 2011.

As Nichole Kelly points out when discussing Hephaestus in her essay Deformity and Disability in Greece and Rome from This Abled Body: Rethinking Disabilities in Biblical Studies, “…Hephaestus reputation for his skills as an artisan is indicative of an economic reality in the ancient world…” Being a person with a disability did not automatically disqualify one from productive work in everyday life within these societies.

In 1935, ten years before the start of what we now know as National Disability Employment Awareness Month, a group of individuals with disabilities came together as the League of the Physically Handicapped. They protested what they saw as unfair and restrictive practices regarding employment of people with disabilities in the Works Progress Administration during the presidency of Franklin Delano Roosevelt. Ironically, President Roosevelt himself had a disability. He came down with poliomyelitis in the summer of 1921, at age 39. The disease left him paralyzed from the waist down. This fact was hidden from the general public throughout his eleven years in office. Further information regarding the President’s disability can be found in Hugh Gregory Gallagher’s, FDR‘s Splendid Deception.

According to the Office of Disability Employment Policy, the aim of NDEAM is to “increase the public’s awareness of the contributions and skills of American workers with disabilities.” The office works under the auspices of the Department of Labor to increase the visibility of workers with disabilities in the labor force, and encourages schools and businesses to participate.  As far as I can determine, those businesses or schools that choose to do so have wide leeway in determining what to do in observance of NDEAM.

The Office of Disability Employment Policy also offers information to employers who wish to hire people with disabilities through their webpage titled, Business Sense. Within this section are resource articles from 2008 to 2011 for the employer who wishes to hire people with disabilities. Included, (among many others) are articles detailing universal design in the workplace, and an article featuring the Job Accommodation Network. Anyone may access the articles, whether they are an employer or not, allowing an open exchange of information for all.

What do you think of National Disability Employment Awareness Month? Do you think it accomplishes the goal stated by the Office of Disability Employment Policy? Are there ways it could be improved?

There are VR offices throughout the United States, and many satellite offices to provide vocational services to those living outside major cities. Your closest state VR office can give you information regarding the location of the satellite office nearest you. Many state vocational rehabilitation programs maintain websites specifically geared toward their programs and services offered, and can detail the requirements to become a client and your responsibilities as a client.

So, what can you expect as a client of VR? In general, during your first face-to-face meeting with a counselor there is often paperwork involved. This paperwork signifies that you wish to receive VR agency services. It may also include release forms, so that the counselor can obtain information from other persons or entities, such as your physician, a therapist. This information is gathered so that the counselor can learn how best to assist you as a client. Meetings, telephone or email contacts with your counselor are important components of working with the agency.

Vocational Rehabilitation counselors work with you to determine jobs or careers you might enjoy and the equipment or training you need to be successful in the goal you choose. You and your counselor will develop and plan your Individualized Employment Plan, or IEP. In the IEP, your counselor will provide services or referrals that may include job search assistance, interviewing classes, transportation, referrals to local resources, allowances for training and job retention assistance. Some VR programs offer a clothing allowance if you do not have interview attire or can provide tuition for clients who wish to further their education in order to meet a job goal. Again, services can differ from state to state, so do contact your agency for details.

It is part of your responsibility as a client to apply for jobs. Once you express interest in a position, with your consent, your counselor may be able to speak with the employer regarding your application and your qualifications for the position. This can help the employer see you in a favorable light, which could lead to an interview and an employment offer.

Once you accept a position, VR may be able to offer you services to help you stay in the job. These services may include job coaching or other support. It is important to discuss what support you might need in order to maintain employment as part of your Individualized Employment Plan.

Have you used Vocational Rehabilitation services in your state? How was your experience; what did you accomplish?

This month, the Department of Labor released employment statistics for persons with disabilities for the month of September 2011. Unemployment last month was 16.1%! This is double the percentage than for people without disabilities.

Federal Employment:

In alignment with Obama’s recent message to increase awareness of and the hiring of people with disabilities to increase workplace diversity, several government programs are in place. Also, in July 2010, Obama signed the Executive Order 13548 to increase federal employment and retention for people with disabilities by governmental departments. His intent was for the Federal system to be used as a model to organizations and businesses in hiring people with disabilities.

People with verifiable disabilities may be eligible for applying for federal jobs through the Schedule A hiring authority. Schedule A is a way for people with disabilities to apply for government jobs without competition from other applicants; this can be an advantageous way to get a federal job, since applying under Schedule A removes some of the application red-tape and allows for a faster hiring process. If you are eligible, use it!

Another government run program is Ticket to Work (TTW), which is a government program designed for people on Social Security Disability Income to reenter the workforce. One benefit of TTW is that it offers a trial employment period of 9 months, to help make sure you will stay in your job long term, thus reducing dependence on SSDI.

Workforce Investment Act (WIA)

WIA is a Federal Department of Labor program enacted in 1998 for improving employment, training, vocational rehabilitation programs. WIA allows for accessible employment services, education, and job training available through One-Stop locations. Clients can receive career assessments, get assistance with job applications or unemployment insurance, get job search, and placement help and get labor market information. All adults are eligible for services.

Disability Program Navigators were individuals working in One-stop centers assisting in disability employment related training. Another important responsibility of the DPN was to help train and educate employers on hiring people with disabilities, ensure workplaces are accessible, and improve worksites for workers with disabilities. Unfortunately, the Federal funding ran out last year, despite the One-Stop’s success of getting 79% adults with disability participants back to work and employed for at least 6 months. And though DPNs are no longer available, you can still seek services through your local One-Stop center.

In October 2010, The Department of Labor awarded $21 million to nine states for a three-year agreement: Alaska, Arkansas, Delaware, Illinois, Kansas, Maine, New Jersey, New York, and Virginia, with funds under the Disability Employment Initiative (DEI) to increase education, employment, and training opportunities for people with disabilities. Similar to Disability Program Navigators, the DEI hires staff with disability employment backgrounds

Employer Hiring Incentives:

There are many incentives for employers to hire people with disabilities. One of those is the Work Opportunity Tax Credit, or WOTC, which has been extended until December 2011. This is a Federal tax credit for employers for an amount up to $2,400 for hiring adults with disabilities and up to $4,800 for disabled veterans. If you are receiving SSI or are a Vocational Rehab client, your employer is eligible for the credit.

Other tax credits include Welfare-to-work, which allows for a tax credit of up to $8,500 for recipients of Temporary Aid for Needy Families (TANF). Enterprise Zones (EZ) are those where employment is depressed, such as in urban areas, and is another profitable credit for employers, offering thousands of dollars for each employee hired. Businesses with less than 30 employees are eligible for the ADA small business tax credit, giving employers a credit of 50% of costs up to a maximum of $5,000 per year.

On the Job Training (OJT) are funds given to employers to cover the cost it takes to train the employee—funds can be used for training classes, trainer wages. With OJT, the employer can ‘try out’ an employee without feeling obligated to hire the employee if it doesn’t work out. OJT works for the employer by assisting with training costs, and helps the employee by offering training and experience. These programs are so effective, that a previous client I worked with had a yearly part-time salary of $9,000, and with the addition of the WOTC, EZ, and OJT, the employer was credited for $7,500! That is a huge savings and incentive for hiring additional employees with disabilities.

With both employee and employer incentives there are some great opportunities out there for everyone to succeed. Employers can receive tax credits and training costs, while employees can receive trial work periods, are able to receive SSDI while working, and use career services to learn new skills. By educating yourself on the different resources, you have the tools necessary to find and keep your job.

I have been working with WorkBuzz.com, CareerBuilder’s online work blog; Anthony Balderrama from CareerBuilder contacted me to be a consultant for an article on disability employment. The thought of doing a project that would reach thousands of readers thrilled me. This would be an opportunity to share resources within our community, as well as bring awareness to others who don’t know much about employing people with disabilities.

One of my passions, as you may already know, is to assist others with disabilities find meaningful employment. The first article I participated in, Job Seeking When You Have A Disability;  I offered tips and suggestions to job seekers with disabilities. James Medley, another one of our ILWAD contributing writers, also offered his experience with having a disability while seeking work. James and I would like to share this article with you, hoping that it will provide you with some insight and tips. We were also really pleased to have seen the article be picked up by the online news site, Newsday.

Since the first article had such a great response, Anthony contacted me to author a follow up article on tips for handling disability disclosure on the job, When and How to Disclose a Disability on the Job. This was a great topic for me to write on because I am asked this question all the time when working with clients: Does my employer need to know about my disability? What should I say? How do I say it? I hope that you will find this article useful and please feel free to pass it along to your friends or coworkers. It’s a great way to bring awareness to hiring people with disabilities, as well as dealing with a disability on the job.

More disability employment articles to come via CareerBuilder’s WorkBuzz.com, so be on the lookout for those. Hopefully, more people will become aware of our worthy contributions to the workforce, and our community will become a stronger presence in the work world.

Feel free to comment below on the articles. Did you find anything useful? Do you have any employment tips?

October 20, 1995 was the most pivotal day in Travis Roy’s young life. A day that would determine the outcome of his future, a day he had been dreaming about for most of his short 18 years of life. For Travis, this day started with overwhelming excitement and joy and culminated with indescribable tragedy and grief. It was a day that encompassed the full spectrum of human emotions, from great joy to unimaginable heartache. You see, October 20, 1995, was the last day Travis laced up his hockey skates and stepped foot on the ice he so loved. It was the last day he suited up in his beloved Boston University hockey uniform. It was the last day he gave his teammates a celebratory good luck high five. On this day, instead of fulfilling his long awaited dream, Travis came face to face with his worst nightmare. The blink of an eye was all it took to turn a vibrant and talented young athlete on the cusp of a legendary hockey career into a young man struggling to survive with a drastically changed life ahead of him.

Eleven seconds into his very first hockey game as a Boston University Freshmen all star, Travis slammed headfirst into the sideboard at top speed, smashing the vertebrae in his neck and instantly paralyzing him from the shoulders down. His very first game had sadly become his last. Unlike most people, Travis has had to share the most important day of his life with the day his life tragically changed forever. His memories of joy and anxious excitement for his first game are tainted with memories pain and heartbreak. But with the demise of one dream, came the creation of a new one. Almost sixteen years after that fateful day, Travis has become the true epitome of triumph over tragedy and has given new meaning to the motto; never let your obstacles ruin your chance for success. Travis has gone on to become an extremely prominent and inspiring author and motivational speaker. His autobiography, Eleven Seconds chronicles his life before and after his injury and showcases his intensely positive outlook on life. Shortly after his injury, Travis became an influential voice for the thousands of people with spinal cord injury and founded The Travis Roy Foundation to provide support, information and research for those suffering with this devastating injury.

I am so fortunate to know Travis personally and I sat down with him for a chat. Check it out below!

M: Tell me about that fateful October night in 1995? Summarize the moments before and after you suffered this devastating injury? Were you conscious in the moments after your injury and if so, what was going through your mind?

T: October 20, 1995 was the best day of my life. I worked my whole life to live the dream of playing Division I college hockey. My family, friends, and old coaches were all in the stands that night. When it was finally my turn to take the ice I couldn’t have been any more excited, but at the same time I knew I was ready to play at the Division I level. I never did lose consciousness. The thoughts going through my mind mainly revolved around the idea that I knew my life was over as I knew it. But I would never play hockey again. And that I was in big trouble. The main emotion I was experiencing was sadness, because I knew everything that I had worked for had come to an end.

M: What was your diagnosed level of injury and what amount of movement and sensation did you maintain?

T: My injury was at the fourth and fifth cervical vertebrae. I have no sensation below my shoulders and only slight movement in my right arm.

M: When you finally realized the severity of your injury, what went through your mind? How did you turn the initial shock into an overwhelming fighting spirit? Have you always maintained an optimistic attitude?

T: There wasn’t a whole lot going to my mind in the first couple months after my accident. I mainly just took it one day at a time and faced whatever challenges I had to face that day. I always had a fighting spirit due to my athletic background. I was never one to give up and always tried to make the best out of each and every situation. My positive attitude has always been ingrained in me thanks to my parents.

M: Loss can happen to us in many ways. The loss of a loved one, the loss of a relationship, the loss of a home, etc. Those of us who have suffered a spinal cord injury experienced a vital loss we all take for granted; the movement of our bodies. How did you come to terms with this loss?

T: I don’t know that I ever thought about coming to terms with the loss of my physical abilities. When they rolled me off of the ice the night of my accident on the stretcher, I had an instinct that told me this life is over, don’t waste your time dwelling on the past, let’s just figure out how to move forward… one day at a time. Don’t get me wrong, I’m sad for the losses, but it doesn’t do me much good to think about those things.

M: Like many of us with SCI, you underwent intense rehabilitation. How did you maintain a sense of optimism while undergoing rigorous physical therapy? How did you adapt emotionally to the limited movement of your body?

T: My physical rehabilitation was certainly intense, but I’m not so sure I ever looked at the big picture. I just took it one task or exercise at a time. Six months after my accident I found myself back at home where I had to face a new set of challenges. Emotionally, my thoughts were always on how I was going to make the best of this, not only for myself, but for my family and friends. I didn’t want to let them down, nor myself.

M: Have you gained any additional movement or feeling in the years following you injury?

T: No, I have not gained any additional moment or feeling in the years following my injury.

M: What would you say to those who have suffered a recent spinal cord injury? What advice and words of wisdom would you give them?

T: The biggest thing I learned after my accident was when I did have a bad experience, to not let that be the end of it. You always have to give things a second, a third, and sometimes a fourth chance before you give up on something. Usually you’ll eventually find ways to accomplish the task or feel more comfortable. For instance, the first time I went out to a restaurant after my accident it was an absolute nightmare. I couldn’t get close enough to the table to reach my plate. My mother had to stand up to feed me each bite of food. I felt like everyone was staring at me. I literally started to cry. However I found the second time I went out to a restaurant I was able to find simple solutions where things went more smoothly. I also had a better idea what to expect. Today, there is nothing I enjoy more than going out to eat with my friends and family.

My other advice to family members who have had a loved one sustain a spinal cord injury, is that fundraising is critical to alleviating many of the hardships the paralysis brings on. Living with paralysis is much more bearable when you have the proper equipment… the right bed, wheelchair, van, voice-activated computer, etc. The technology is absolutely amazing, but it is unfortunately very expensive. It can be very awkward to have friends and family raising money on your behalf, but in the long run there is nothing more important than having money available to purchase needed equipment, especially where there is no immediate cure in sight.

M: There are also many other disabilities and struggles that people face on a daily basis, what advice would you give to anyone facing a challenging situation?

T: My biggest advice to someone facing a challenging situation is to not waste your time looking back. If you’re not moving forward and trying to figure out how you’re going to overcome the challenge in front of you, you’re only regressing. I know there are times where it feels like there are no answers, but I truly believe that somehow, some way, there is always a solution (even if it’s not the one you were looking for).

M: As many of us know, life in a wheelchair can be extremely challenging, how do you cope with the day to day struggles of having a physical disability? How do you deal with the frustration of adapting to a world that is not always wheelchair friendly?

T: As far as coping with my disability, I’ve always had the thought process of recognizing that things could be worse. Thank goodness I still have my mind, that I’m not on a ventilator, that I have family around to support me. Sure I wish I could drive, that my level of injury was lower and that I had more physical movement, but I rarely ever think of those things. As the saying goes, my glass is always half-full… for that matter, I mostly try to think my glass is Full. I know this sounds easier said than done, but I truly can’t waste my time, energy, or emotion on the things that I can’t do or when things are not accessible. As soon as I acknowledge something is not possible, I try to figure out how to make it accessible, or I move on.

M: What do you do to keep yourself healthy? Do you exercise or take part in any adaptive activities? Do you use restorative therapies like FES(Functional Electrical Stimulation)?

T: I am embarrassed to say that I do not exercise at all and that I rarely ever do my range of motion. I am not proud of this, but it is the truth. I do spend time each morning making sure I’m properly sitting in my wheelchair, that my hips are centered and that I am completely in the back of my chair (that I’m not slouched). I also try to eat healthy, and am very aware of my portion control.

M: Your autobiography Eleven Seconds is an inspirational and informative story that provides insight and hope in overcoming a life-changing situation. Writing a book is such a tedious task, what was that process like and what was your ultimate goal in sharing your story?

T: To be honest, I didn’t have a whole lot of preconceived notions when I wrote my book. My goal was to tell my story and be as open and honest as possible. I felt like for the most part, I made good decisions as a child, and worked hard to achieve my goals. I was proud to make it to Boston University and receive an athletic scholarship. I guess I wanted people to know a little bit how I got to that point, and for people to know a little bit about me and who I was before my accident. The physical process of writing the book was relatively easy, as my publisher provided me with a ghostwriter that helped me through the process. I generally spent a couple hours a week talking with my ghostwriter and he would help record my thoughts. Most of it was done during my first semester after I returned to Boston University. The whole process took about a year. Overall it was an enjoyable experience and I’m happy to say that I’m proud of how the book came out.

M: Your foundation has done so much for the millions of people who have suffered a devastating Spinal Cord Injury. What was your initial goal in starting the Travis Roy Foundation and how do you feel about the amazing success it has today? What are your hopes for the future?

T: I’m extremely proud of how the Travis Roy Foundation has turned out. I quickly realized after my accident that I was fortunate to have good insurance, a significant amount of fundraising done on my behalf, and great family and friends. I also realized that there were many people in my condition that did not have the support, and I wanted to help them out. The TRF has since helped out hundreds of other spinal cord injured survivors through the purchase of adaptive equipment grants. These grants range from the purchase of wheelchairs, voice-activated computers, simple home modifications. My other goal for the Foundation was to raise money for research. It would be a dream come true to end paralysis. My hope for the future is that we’ll continue to be able to help more spinal cord injured survivors and fund research. Ideally, I would love for a cure to come so that the Travis Roy Foundation would no longer be needed.

M: You have also become a very successful motivational speaker. How often do you give speeches and to what types of crowds? What is the overall theme of each speech?

T: I give anywhere from 30-50 speeches a year. I speak to all different types of crowds, from elementary schools to Fortune 500 companies. Depending on the audience, the theme of my speech changes. For younger audiences my speech may include topics such as disability awareness, goal setting, and establishing individual core values. For the corporate setting, my speech revolves around the idea of facing life’s challenges, whether you choose those challenges, or the challenges choose you. That you always have choices in how you deal with life’s challenges.

M: What are your overall goals for the future?

T: My goals for the future include remaining a productive part of society. I have a 10 year business plan with annual financial goals. I have goals to increase the fundraising efforts of the Travis Roy Foundation so that we can help out more individuals and fund more research.

M: What are your thoughts on Stem Cell research?

T: My thoughts on stem cell research is that it will help lead to an eventual cure for paralysis. It will not be a perfect cure, but I do believe (hope), that it will allow those that suffered a spinal cord injury to be independent.

M: Most of us with SCI dream about the day we will regain the full use of our bodies. If you were to wake up tomorrow with the full use of your body given back to you, what is the first thing you would do?

T: The first thing I would do if I was able bodied again, would be to hug my mother, my father, my sister, and all of the other people that have helped me through the years.

M: Do you think a cure for SCI will be found? Do you believe you will walk again?

T: I believe those with spinal cord injuries will walk again, however for those that have been paralyzed for say 20 years or more, I am concerned they may not “walk again”. However I do hope that those people will gain enough mobility so that they can be independent. More specifically, that they have enough movement to get in and out of bed, control of their bowel and bladder, and enough dexterity to take care of their daily physical needs.

I truly don’t know if I will walk again, but I do hope to be independent again, which would be enough of a “cure” for me. When I say independent, I mean that I would no longer need care attendants or loved ones to help me with my physical needs and that I would be able to live by myself.

Check out Travis Roy’s autobiography Eleven Seconds available at most book stores

travisroyfoundation.org
travisroy.com

I hope that by sharing these inspiring interviews, we can learn about the different challenges we all face and how we overcome those challenges to live a successful, happy life. If you know someone who you would like to see interviewed, please contact me.

My first SCI interview with Travis Roy will be up soon!

Maureen Gazda (@mgazda)

But with each device came a barrier: price. These devices were all very expensive. The nicer of the CCTVs was over $3,000 dollars. The cheapest item, (one which I coveted,) was a handheld video magnifier. It fit in your pocket, looked cute and wasn’t bulky; but it was over $500. The nicer of the CCTVs was over $3,000 dollars. I work for a non-profit organization, and although I work fulltime, I know that I could not afford many of these items. When I was a Vocational Rehabilitation client I had a little more access to the assistive technologies, but now I borrow from co-workers or see what accommodations my job can provide. But, what if that isn’t an option? What if you are in a position where you need this technology but don’t have the funds? Assistive technology is often not accessible and this is very frustrating. Places like public libraries often have (very old and, very outdated) CCTVs. In Atlanta we’re lucky to have the GLASS (Georgia Libraries for Accessible Statewide Services) that has a number of options for people with disabilities, but alas, people in rural areas may have trouble accessing these libraries.

I have an iPhone and there are many fantastic apps that can help make the world more accessible for people with visual impairments. For example, I have dragon dictation for doing speech to text, a currency reader that can tell you what denomination of bill you have and a great app I recently found called VizWiz. VixWiz allows you take a picture of something and speak a question (i.e. what pattern is this shirt?) and a bank of volunteers stands by to look at the picture and send a spoken response back. The best part is that all of these apps were free. You just have to have an iPhone and be able to afford a data plan. These apps, coupled with the built in features (zoom, voiceover and contrast settings) make this phone, for me anyway, the perfect tool for making the world more accessible. I can take a picture and enlarge menus if they’re too small, I can have it read text messages and e-mails if (as happened a few weeks ago) my glasses were to break.

So, my question for you, dear readers: how do you afford assistive technology? Do you have resources in your community to help?

This video was created as a project in 2003 for a SERP (Special Ed, Rehabilitation, and School Psychology) class at the University of Arizona. We tried to show different viewpoints from someone who was newly/temporarily disabled vs. those viewpoints from someone who has fully adapted to a disability for quite some time. We also tried to show how disability is reflected by the public. Patrons and employees are fast to help one with a disability, whether assistance was asked for or not. Meanwhile, a struggling able-bodied person is offered little or no help for the same, or more strenuous task.
- Eric Katz (@erickatz)

Paralyzed at the age of 21 in a car accident, Max lived with his mother for four years; however, the financial strain became too great and he was forced to move, like others with severe disabilities at the time, into a nursing home.  He stayed in this nursing facility, St. Joeseph’s, for twelve years, becoming increasingly frustrated from the doctors controlling and diagnosing him as ‘dependent,’ frustrated by them labeling him by his disability, and frustrated by the attitude of society in which he lived.

During this time, Max held on to hope and found a way to escape his confinement: painting. Max honed his artistic skill and felt that is was a way of imagining new possibilities; it became a source of satisfaction for him.  He was angered, however, by the paternalistic attitude that many had in regards to his art, he was lauded with praise and encouraged to keep painting, but then professionals informed him that he was pretty good, for an amateur.

In 1970, Starkloff attended a rally in California led by Ed Roberts.  Here, he saw a group of people, who were also quadriplegic, being active and living independently.  They were engaged in activities in their school and were working to eliminate barriers that would otherwise hold them back.  This was exactly what Max needed to see, people with disabilities in control of their lives and deciding on the issues that affected them.  Max took this inspiration back with him to St. Lois where he was determined to open a center similar to the one in Berkeley, California.

When Max got out of the nursing home he married the woman he was engaged to, who just happened to be a physical therapist at St. Joseph’s. After becoming married, Max and his wife began Paraquad, a Center for Independent Living, advocating for the removal of physical and societal barriers so people with disabilities would have full access to their community.  Max also worked to found the National Council on Independent Living (NCIL) 1983. In 2003, the Starkloffs opened the Starkloff Disability Institute, a non-profit geared at changing public perceptions of disability, and advocating for the full involvement of people with disabilities in society.  They accomplish this through a combination of education and direct action.

Sadly, Max Starkloff died in December of 2010 from complications from the flu. His legacy will live on in the form of the organizations that he helped found and the lives that he changed with his tireless advocacy.

A bit of history about me:

Born and grew up in the mountains of western Pennsylvania as the only child of a high school shop  teacher/coach dad and a homemaker mother, diagnosed with MS (Multiple Sclerosis) two months after graduation from high school in 1958.

Now seventy years of age, I look back on a life that was filled with music, people, children of all ages, travelling, loving, liking, animals (mostly cats and a couple of dogs,) teaching music and reading to various ages, college and graduate school, singing with choral groups, directing other choral groups, church activities, social life, entertaining, dancing, eating out, week-end or longer trips and vacations.  It added up to a normal active life.

That was then, this is now…

Now I am unable to do many of those things.  The MS diagnosis fifty-five years ago put an end to that chapter of my life.  Relapsing-remitting MS changed to Primary-progressive MS.  No longer able to be the teacher with an active social life, coming and going at will.  It is necessary to become another me, one who has a d-i-s-a-b-i-l-i-t-y. That must be the other D word.  Maybe I’ll write a song about that.  Maybe not.

My efforts have turned to a different direction.  I have turned once again to my secondary love of writing.

My walking ability is much, much slower now, so much that I use a scooter outdoors and a wheelchair indoors.  When I do walk, two canes are needed, for my balance is very bad.  That is, unless I can touch a wall or countertop.  Doing our daily dishes is an easy job.  I stand at the kitchen sink.  This gives me a great deal of confidence. There are counters all around, which make it easy for balance.

I also do our family laundry.  Our family consists of my husband and me.  Some weeks we have a small amount of dirty clothes, but some weeks it takes most of a day.  The house-cleaner’s towels are placed in our washer.

Caring for two cats is also part of my duties.  They do seem light, correct?  These cats are so sweet; caring for them is a joy to me.

I do have help from my husband who said after two short weeks of marriage,

“Honey, I really like my cooking better than yours.  Please don’t be offended.”

To that I replied,

“No offense taken, have at it!”

He did and he is a really good cook!  This provides me extra time for other matters, whatever they are.

Why no mention of my children?  I am childless.  It just wasn’t meant to be.  I have compensated by enjoying the children of others and the children I taught.  Fortunately, I always sent them home to someone else at the end of the day.

Then I was able to return to my quiet house, my husband and cats.  Does that seem selfish to you?  Maybe it was. But I fought MS fatigue even then.  I needed a quiet house with no distractions then as now.  Cats usually curl up in your lap or in their own bed, perfect.  Just having them seems to comfort me and help me relax.

Being disabled makes one do a lot of thinking.  I mean, you think you aren’t able to do much else.  Isn’t that right?

NO! VERY EMPHATICALLY NO!

You might need to sit down, jot a few things on paper that you like or want to do.  We CAN use our minds!  Your mind is full of POWER!

Zig Zeigler said:

“What your mind can conceive, it can achieve!”

You might need to make some adjustments in the way you get it done, but it CAN be done.

An example from my own life:

I now teach private piano students of all ages and write content for websites.

No I can’t run a marathon or go out dancing.  The things I will do are the things I can do!

I do not know the extent of your disability.  I do know there are resources out there to help and give you guidance to find out what you can do and how it can be done. There IS a way!  Find it and do it!

NEVER say, “It can’t be done.”  Get the word NEVER out of your vocabulary.

You are not going to let disability define you.  You must define it.  Make your life meaningful by showing what you can do.

J Gail Norris
623-217-3773
www.pianolessonsinglendale.com

The U.S. Department of Homeland Security’s, FEMA (Federal Emergency Management Agency), assists people affected by natural disasters. Here, they have the ODIC (Office of Disability Integration and Coordination); this division provides consumers, cities, and others with information to help prepare for disasters. There is a lot of emergency preparedness information people need to know before a disaster strikes. Someone who has specific medical needs, mobility concerns, medications, will need to come up with a disaster relief plan as well as notify their caretakers or family about their plan, so everyone knows what to do, where to go, and who to call. If you have never been in an emergency and don’t know how you need to prepare,  take an Ability assessment.

Different disasters call for different emergency plans. For instance, if a person in a wheelchair were in a fire, he would need to know his escape routes, and bring with him the necessities, such as his oxygen tank, medications, or assistance animals. On the other hand, someone with a hearing impairment would need to create a list of contacts, and bring a pad of paper and pen to write instructions for emergency crews, if necessary.

One good way to try to figure out what you would need for an emergency is to go through the motions, such as in a safety drill. It’s a good idea to know your escape plan ahead of time. Be able to get out of your home from several different areas. Know how to shut off the gas and water. Does your family know the escape routine, if not, you should do a practice run every 6 months, according to FEMA. Know what to grab in an emergency and know where it is—it’s better if it’s easily accessible, and not in the attic, or something like that.

What do you need in your emergency preparedness ‘kit?’ Besides the basics: food, water, and shelter, a person with a disability needs to have in plan their specific requirements for their condition or disability. Here are some basic things to consider in preparing for disasters. Get a complete list of what to include in your emergency kit.

1. Create a support network and make sure they know their role in assisting you
2. Use emergency planning resources such as: FEMA, Ready.gov, Accessible Emergency Information
3. Know the phone numbers to the local independent living center, shelter, hospital, transportation, poison control center, personal care facilities
4. Create and emergency kit; include, batteries for hearing aids, wheelchairs, technologies; copies of medical information/ medications/ allergies, etc.; get an I.D. bracelet if you have a medical condition that requires additional care (if you weren’t able to communicate with paramedics, for instance, how would they know if you were allergic to penicillin?).

Watch a video on what to bring in an emergency Ready.gov Emergency Preparedness Video If you have created an emergency plan and share it with the people in your life, you can be prepared for disasters. Make sure you have what you need, if something bad were to happen. Practicing for earthquakes, tornados, floods, and other natural disasters may end up saving your life, or someone you know. Reviewing your plan every 6 months, as FEMA suggests, will ensure you and your family know what to do, who to call, what to bring when disaster strikes. Practicing takes only minutes, and is worth it. Better to know what to do and not need it, than it is to what know what to do when you do need it.

ILWAD members, how do you prepare for disasters?

Upon arrival, we were seated at a two-top pushed against the wall. I had misgivings about this in terms of space, but who can blame the restaurant for wanting to use every table sized corner in times like these? We sat down, and I placed my walker as close to the table’s edge as I could, in an attempt to leave some room for the wait staff to pass on their way to other tables.

Apparently, my efforts were not enough for some. Soon after we received our menus, we were approached by a man who picked up my walker (without my permission, I might add), and informed me that he, “…needed to move this so people could get by.” He then proceeded to move my walker slightly to the left, and continued on his way.

I was appalled at his thoughtlessness. As I took in what I had just heard, my first thought was, “Oh, so I’m not considered to be a person? How can that be? I’m breathing, same as he is.” My second thought was that if he had just asked me, instead of moving my personal property on his own, I would have been glad to move my walker allowing him even more space. For instance, I would have folded it, and moved it to lean on the back of my chair. However, by not asking, he did not allow me the opportunity.

Most of us are taught as children that it is not right to touch another person’s things without permission. Why then, did he think it was okay to move my walker without asking? I’d wager a dollar to a dozen doughnuts since it was a walker (and not, say, someone’s purse that he was moving) he never thought to ask. No, he considered it more expedient to tell me what he was doing as he was doing it, instead of paying me the compliment that a request confers.

This episode brings to mind similar situations in which I have been perceived to be merely an observer. I was left feeling discounted, as less worthy, as the acted-upon, instead of the actor I have grown accustomed to being in my own life.

So, dear readers, how would you have handled this situation and the feelings it raised?

Sensorineural hearing loss can be mild, moderate, or severe, including total deafness…The great majority of human sensorineural hearing loss is caused by abnormalities in the hair cells of the organ of Corti in the cochlea…In the rarest of these sorts of hearing loss, only the auditory centers of the brain are affected. In this situation, central hearing loss, sounds may be heard at normal thresholds, but the quality of the sound perceived is so poor that speech cannot be understood.

In my case, they do not know for certain, but speculate at the cause of my hearing loss.  When I was an infant, I contracted measles.  Also, my grandfather & his twin brother, when they were both in their early 30′s, started losing hearing.  Each, by the time they reached their early to mid-40s, was almost completely deaf.  After my hearing test two years ago, my audiologist told me I was predisposed to losing my hearing, and to “make preparations.” Isn’t that what doctors tell you when a loved one’s condition is at a point where they can’t do anything more and it’s time for the person to die?

The good things is, my cup is half full, and the reason I am writing this article, is because I am inflicted with a symptom – and it is Tinnitus. From Wikipedia: Tinnitus (from the Latin word tinn?tus meaning, “ringing”) is the perception of sound within the human ear in the absence of corresponding external sound. Tinnitus is not a disease, but a symptom that can result from a wide range of underlying causes: abnormally loud sounds in the ear canal for even the briefest period (but usually with some duration), ear infections, foreign objects in the ear, nasal allergies that prevent (or induce) fluid drain, or wax build-up…Tinnitus is common; about one in five people between 55 and 65 years old report symptoms on a general health questionnaire, and 11.8% on more detailed tinnitus-specific questionnaires.

Do you see anywhere, since this symptom is “common,” that it may be caused by sensorineural hearing loss?  In today’s modern times, it’s not even listed on a popular dictionary – so I am basically, misunderstood.  My head rings 24/7 – it sounds like bus brakes – or the emergency broadcast system playing right outside my left ear and in the center of my brain towards the back right side – very loud!  Fortunately, as a young boy, I learned to embrace this and not to fight it.  As a middle-aged man now, I can only imagine the difficulties of growing up if I would have fought this.  To give an idea of how loud this is, as I am writing it, I am talking out loud in a normal voice, and the sound of the right brain is drained out by my voice, but the left-brain sound is much louder than the sound of my own voice.  I am not complaining – I am merely sharing information.

In the dictionary, there is a suggestion outside of the article of definition for tinnitus, that sensorineural hearing loss also be included in one of the causes.  But it is NOT included – therefore, not even the editors approving the article of definition have gotten off of their tush and consulted with top physicians to confirm that, in fact, sensorineural hearing loss can be a cause of tinnitus.  If you need confirmation of that fact – I am it.

If you feel you are misunderstood about your disability, share it with others.  Make sure you find a format (writing an article or record a voice article and have someone help you get it typed – send it to me and I’ll type it for you) to get it published and get it out there for others to read.  Keep a positive perspective – every day is a beautiful day, we may have aches and pains and symptoms causing us to be uncomfortable, but do not let the disability overtake you – always be in control of your own psyche.  If you feel down or depressed, be sure to reach out and have someone to talk to.  Life is short – accept your disability (and in the case of me, mine is getting worse) – and share your strength in dealing with your disability with others.  Be well.  Thank you for reading.

A daily dose of vitamin D could cut the risk of cancers of the breast, colon and ovary by up to 50 percent, a 40-year review of research found. The evidence for the protective effect of the “sunshine vitamin” is so overwhelming that urgent action must be taken by public health authorities to boost blood levels, say cancer specialists.

Growing bodies of evidence in recent years show that lack of vitamin D may have lethal effects. Heart disease, lung disease, cancer, diabetes, high blood pressure, schizophrenia and multiple sclerosis are among the conditions believed to play a vital role. The vitamin is also essential for bone health and protects against rickets in children and osteoporosis in the elderly.

Read my full report here: The Sun Is Not Enough! – The Silent Epidemic Of Vitamin D Deficiency

Before this week, I would have said that natural disasters in New Jersey were an oxymoron.  After this week, I don’t know what to expect next.  On Tuesday, August 23^rd, we experienced an earthquake!  I did not believe that it was an earthquake until it was published on CNN.com.  I was sitting at my desk working on a project and all of a sudden, things started to shake; I thought that there was a big truck driving by or someone was moving things on the floor below us.  I also thought that I might have been going ‘crazy’ or getting dizzy. I asked my co-worker who was standing about 20 feet away from me if she felt something; she thought I might have been crazy, because she heard things shaking, but did not feel it.  She said that it was probably an earthquake, and I said, “No way! There are no earthquakes on the East Coast.”  Clearly, I was wrong!

It was the topic of conversation for the rest of the day.  It was a cool feeling, but nothing that I am looking forward to feeling again.  I am happy that I was not in a city that had to worry about terrorists and not being able to use an elevator to evacuate a high-rise.

And if an earthquake wasn’t enough of a natural disaster, along comes Hurricane Irene!  I went to college at the University of Miami and have been through a couple of hurricanes, but moving back to New Jersey, I did not expect to have to worry about hurricanes any more.  Again, I was wrong.  People started preparing all week, and the supermarkets were empty of all water, bread and milk.  The gas stations had lines around the block; it was something that I had never seen before in New Jersey.  At least in the summer, there are sometimes reactions like this to expected blizzards in the winter.

Once the hurricane came on Saturday, August 27^th, my family and I went to my parents’ house (except for one of my brothers who lives in Syracuse, NY).  It was raining really hard and the wind reached over 50 miles per hour.  At 11:30pm, they called a tornado warning (yes, a tornado!), in our county.  We all went to the basement, and slept down there.  The power went out at 3:30am and it was out for almost 20 hours!

We were lucky that my grandparents, who live ten minutes away, had power; I went there with my brother (who was at home) and hung out and watched the news.  The flooding was incredible!  I have never seen anything like it.  There was a river of water on the main highway!

When it was time to go into the basement because of the tornado, I was thinking, what about the people who use wheelchairs, where would they go in case of a tornado?  Also, with the earthquake, what would someone in a wheelchair do if they had to make it down the stairs?

I would be very interested in hearing from people who have had to deal with something like this.

At disABILITY LINK, there is a program called, take ACTION! that focuses on educating participants about advocacy efforts and encouraging them to become more active in their efforts.  When I took this course, I realized that generally, my focus had been on speaking up for myself, but not necessarily for people with disabilities or trying to change the system.  Part of this could be because the school system I grew up in kept people with disabilities pretty isolated.  The “Special Ed” classes were kept apart from the mainstream classes; those of us in the “mainstream” didn’t get an opportunity to interact with one another. I was the only person I knew of with a visual impairment for the 13 years I spent in K-12.  Fortunately I had my vision teacher (a woman named Joanna Eaton from Northeast Georgia RESA) who worked with me from Kindergarten-12^th grade; she instilled in me a strong ability to speak up for my accommodations in the classroom and in general.

After I went to college, my advocacy efforts were still focused on my needs.  The disability services office wasn’t a very unifying place for students with disabilities and I didn’t know of any efforts to organize.  It wasn’t until many years later that I heard of an organization called disABILITY LINK, I had never heard of a Center for Independent Living, and had no idea what they did exactly.  My friend started working there and it sounded like a very unique environment; from him, I learned about ADAPT and other groups that fought for rights of people with disabilities.

Eventually, I made my way on the board of directors for the organization and later came to work for them.  I can honestly say that my shift from primarily self-advocacy to focusing on the community in general didn’t start until after I began working for disABILITY LINK.

By working here [disABILITY  LINK], my eyes opened up to issues that don’t commonly receive media coverage. I heard stories of people’s lack of access and the social barriers encountered (social barriers that I had first-hand experience with). I felt like a part of the disability community for the first time.  Not long after beginning my position of social media coordinator, I stumbled upon ILWAD and found another great place where people with disabilities could get together and find common ground.

So, I can thank my involvement in my local Center for Independent Living for allowing me to embrace my inner advocate and begin speaking up for others and attempting to make a change for the better in my community and the world.  I can thank social media for helping me spread the Independent Living message as well as ILWAD for being a supportive environment where people can embrace who they are and realize that they are beautiful, not broken.

When did you become a more active advocate? Are you still coming out of your shell? Please leave a comment below.

**ADAPT will be having a rally September 17-22 regarding medicaid “reform”

I have never gotten into trouble when deciding with my gut; however, whenever I try to analyze or think too hard about a situation—it almost never turns out well. I don’t know why this happens. Gerd Gigerenzer, author of Gut Feelings: The Intelligence of the Unconscious, and the inspiration and main resource for Malcolm Gladwell’s, Blink, explains the science behind quick decision-making. Gigerenzer states that our unconscious decides for us, without the laws of logic or reason. We know what we need to do without thinking about it.

Unfortunately, I typically go against my gut instinct, and usually end up suffering, needlessly. Why do I do this, if I know what the result in not trusting my instinct will do? Why do I not trust myself? Do any of you have this problem? I hope I’m not the only one.

So the reason, and what prompted me to write about this, is because I find myself at a crossroad. My gut tells me one thing, and of course, my mind tells me the opposite. Yeah, I know what you’re thinking: She just said, “Go with your gut.” Oh, but I wish it were that easy. I have all these thoughts swimming in my head: what are the implications of this decision; what will the outcome be, positive or negative; I need to make my pros and cons list before deciding; I need to play out all the different scenarios before making a final decision, I should ask my friends what I should do, and so forth.

Last week, I needed to make a decision, my crossroad. The person I was consulting asked me, “Well, what do you think you should do?” In 3 seconds, the answer popped into my head—I knew it that fast! Although, rather than immediately settling on my instantaneous decision, I ran through different scenarios in my mind: what if I did this instead; what if I chose incorrectly; what would be the logical thing to do. These kinds of questions get me into trouble; they encourage me to mull over the decision forever! It’s not useful; it thwarts me–then nothing happens, no decision! The more I think, the more I worry, and the more I avoid making the decision that was there all along.

Instead of thinking and rehashing different scenarios, I need to remember that I already have all the answers already; I know my decision right from the get-go. I just have to follow my gut instinct.

Self-esteem, as defined by the Encarta Dictionary, “confidence in your own merit as an individual person.” Continuing, the word, esteem, “is a judgment of the worth of someone or something.” The “worth of someone?” It sounds callous. Based on that, I suppose if someone were, for instance, to have low self-esteem, that person would have low self-worth. When you think of attributing that characteristic to someone else, it seems heartless. No one should have low self-worth. Though, at times throughout our lives, we have all felt this way.

There is a very fine line in the boundary between healthy and unhealthy self-esteem. In our society, people with low self-esteem are weak; yet others criticize for being overly confident, or having high self-esteem. There is the exact problem—others. It is called self-esteem, because it is your own view of yourself. Who else but you can determine what your self-esteem is? Don’t you have control over how you view yourself? That is an obstacle many people face—basing their definition of their own esteem on how others view them. They judge themselves based upon what they think someone else is thinking. That’s problematic: viewing ourselves based on our assumptions of how others view us. Hope you have a psychic on hand, because that will be a lot of mind reading.

The cycle continues. Those with low self-esteem believe others see them in a negative view, and they internalize outside influences (because of their low self-esteem), thus, creating lower self-esteem. Lower self-esteem gives the impression that they don’t care about themselves, which permits others to have a lower opinion of them. Starting to see a pattern?

A colleague of mine once said that self-esteem is internal, but has external influences. That makes sense; an individual can still have high self-esteem even when things don’t go their way, such as in getting a divorce—a person is not ‘horrible’ because their marriage is dissolving; it is circumstance. One way to look at this is that if you have healthy self-esteem, regardless of your external circumstances, it should stay at the same level.

Having unconditional love and respect for your self is the beginning of a beautiful relationship—with yourself. Have you heard the saying, “in order to love someone else, you have to love yourself”? Who wants to be with someone who doesn’t have self-respect? If that person doesn’t respect themself, why should I? I don’t mean that in a cruel way; my point is this: we show people how to treat us by how we treat ourselves. If we have a low self-esteem, it shows. If you do have low self-esteem and you know it…clap your hands! Just kidding, that was an old ‘hokey pokey’ reference. But, if you know you have low self-esteem, get some self-help books or go to a seminar and learn how to improve it (this is some tried and true personal advice, by the way).

ILWAD readers, have you had low self-esteem? How did/ does that affect your life? How do you achieve high self-esteem?

The job is going really well!  I waited (chose, NOT underachieved) to write this article a couple days late so that I could give you an update on the new job.  I am excited about the prospect of learning new things and being challenged.  The job is fun, and the people are great.  I have even met some more Olympians.  I am so inspired by what they put their body through.  I hope to one day, get to meet some of the Paralympians (Olympians with a physical disability).

I have learned so much while writing and thinking about ILWAD; the amount of positive energy and inspiration that I have in my life, coming from so many different angles and so many different people, is a huge part of it.  I am thankful everyday.  Another thing that I think a lot about, and have written about previously, is choices. When I choose something, I choose it for a reason and try to feel positive about that choice.  Choices don’t necessarily have to be between two, three or four things; sometimes there is only ONE choice.  And even with the choices that have only one option, it is important to feel positive about that choice.  For me, I have only one choice when it comes to having Cerebral Palsy.  I choose Cerebral Palsy.  This way of looking at life and things that are challenging has the ability to turn your sadness and loneliness into happiness and joy!  It is empowering and fun…you should try it sometime!

I choose Cerebral Palsy! What do you choose?

This is one of the biggest frustrations of the invisible illness. You know what pain is, you feel it every day; you know the difference between being tired, and being dead tired! You want to shake them and say, “WHY WOULD ANYONE WANT TO FAKE THE TERRIBLE THINGS I FEEL!” You may even lose friends or family due to your condition. I pray you do not have to go through that; it is very heartbreaking. Every day, you wish that people understood.

One thing that makes invisible illnesses so difficult is that no one is able to see it; whereas, if you had a broken leg, everyone is able see it–so it is real to them. By nature, people are skeptical; when you’re broken inside, it’s NOT visible. When it’s not visible, people don’t comprehend your pain, fatigue, and fogginess.

Nevertheless, you are taking steps in the right direction by looking online for help—such as using this site, ILWAD. Once you finally have a diagnosis, ask the doctor if he could give you as much information as possible; ask what his plan of action is. It’s always nice to have a diagnosis, but there has to be some sort of relationship with your doctor. If you have faith in him and know that there’s a plan, then at least you have some sort of ease.

A lot of us like to do our own research, and the internet is great for that. What I have found most important are friends that can relate. I’m sure our family and friends aren’t trying to hurt our feelings by what they say; they just don’t understand. And in turn, it is easy for us to pull away. So I believe coming to ILWAD has so much to offer everyone. We are a little community that is growing worldwide, yet we have the heart of the Wizard of Oz’ Tin Man and the courage of the Lion.

Section 511 would create a “checklist” that Vocational Rehabilitation would use when assessing if a youth with a significant disability can accomplish an  employment goal or outcome.  The remaining language of the section is ambiguous and has a high potential, according to opponents, of landing youth with significant disabilities in sheltered workshops that would earn them a wage that is below the minimum wage (as per the subminimum wage provision 14(c) in the Fair Labor Standards Act).  It also excludes guidelines for providing a minimum amount of supported employment services for youth.

Not everyone in the disability community is against this, however.  The National Council on Independent Living (NCIL) has endorsed the reauthorization of WIA, along with section 511.  They believe that it is a step in the right direction because even with the potential of earning less than minimum wage, people with significant disabilities will be in the job market and in a place to negotiate a higher wage at a later time.  It would, in NCIL’s view, also offer some protection for those in the sheltered workshop environment, whereas, currently there are none.

Section 511 was a hot topic at the most recent NCIL conference.  NCIL endorses section 511 but many advocacy groups (the National Federation of the Blind, TASH and APSE among many others) have come out in opposition to this section.  Advocacy groups fighting section 511 have sent out press releases, encouraging members and supporters to contact their legislators; they even staged protests across the country on the anniversary of the ADA.   The organizations that are in support are often in support of WIA as a whole and see section 511 as something that isn’t perfect, but could be a step toward something better in the future.

I, personally, am against section 511. Ideally, section 511 would be removed and the legislation would be reauthorized.  What are your opinions? Do you agree with NCIL? Is section 511 of Title V a “foot in the door?”

Sidewalk Chicken goes this way: I [with a vision impairment] walk on the right side of the sidewalk and see people taking up the entire sidewalk (because, you know, they ‘own’ it). If not wearing sunglasses, I adopt a “distant” expression, begin click-clacking on the sidewalk and hasten my pace. If the person jumps out of the way, I win. If the person collides with me, I call it a draw. If, and this has never happened, I move to avoid the collision, then it’s a loss for me. It’s quick, simple, and amusing. Sometimes I wish I could snap a picture the moment the person realizes they’re about to collide into a blind man. It’s usually priceless.

Bulwark: Folks don’t always pay attention when walking along the sidewalk, whether it’s texting, talking, or daydreaming. People will, if not properly motivated to do so otherwise, walk directly into you. This is how I invented the game, “Bulwark.” If I see someone coming at me not paying attention, I brace myself (it helps to know that I have a very sturdy build) and let them run directly into me. I hope that it helps to raise the awareness of the dangers of walking and texting.

The Moses Effect: I like to think of walking places as a little adventure. Generally, even in crowded situations, I can get places fairly quickly, especially when people are paying attention and the “Moses Effect” kicks in. My friends and I generally benefit from this. I walk along a crowded street and pedestrians try to avoid being touched by my cane (I don’t swing it that hard, honestly); it’s like the Red Sea parting, hence the name (I’m going to say that I coined this phrase, as I’ve never seen it used in this context before).

Please share any games you play or unique terms in the comments section below. Feel free to use my rules and play at your own risk. I do this understanding that it might not end entirely well.

Over these last few weeks of not writing, there has been a lot going on–good news, bad news, and just plain ol’ news. I have not stopped going on the [ILWAD] site, but I was not writing and each week I missed, I felt worse; I made excuses and thought they would make me feel better. Guess what…they didn’t.

This post is kind of a mixture two previous posts, and they both have to do with me, and neither of them have to do with living with a disability; but since I live with a disability, I guess it did.

Good news or bad news first? I will go with the bad…I like happy endings.

Bad news…A few weeks ago, I wrote a whole post about underachieving. And with the last couple weeks of not writing an article, I have underachieved big time. I am embarrassed. No good that can come from underachieving; however, there is good that can come from realizing that you have underachieved. You can make it better. You can redeem yourself. I am on the road to recovery, and will be better about writing.

Good news!!! I accepted a new job! In the end of the hiring process, I was offered two jobs. Choices! After a lot of thought and advice from people whom I respect and admire, I will be working at the governing body of rowing for the United States. They oversee all levels of rowing from youth to masters (older people) and even the Olympic and Paralympic rowing teams. I am so excited about it; I am going to be working with the members and doing some community relations to help make rowing a popular sport in America.

In some countries, rowing is their second sport behind soccer (England) and rugby (New Zealand). I will also be able to travel to different regattas around the country; not around the world yet, and probably not to the Olympics, but I am going to try! I love sports, and the business of sports, and my dream would be to one day, attend the Olympics. I have been to a couple Super Bowls, but the Olympics and the patriotism that is shown at the Olympics is SO inspiring to me. I would also like to attend the Paralympics, talk about inspiring…

Please reply to any piece of this post…I want to hear from you! You make this all worth it.

This is great; but how does the Ticket to Work program work, you might wonder. To be eligible for the ticket, you must be on SSI or SSDI and be between the ages of 18 to 64. Once you receive a ‘ticket’ from the SSA, you then take it to an employment support service, such as an Employment Network (EN), or to a Vocational Rehabilitation specialist. From then, working with the EN, you will identify your skills, strengths, work experience, and education to find a job or career path that would be suitable and practical for you. The Work Incentives Planning and Assistance project (WIPA) in your area can assist you in figuring out how employment will affect your SSDI and health benefits, as well as answering other questions about TTW.

You might ask yourself, “Well, this sounds great, but I don’t want to lose my SSDI or health care, so why should I do this?” Good question, a lot people have this concern. The great thing about TTW is that you won’t lose your benefits or SSDI because there are programs in place to assist you in your transition from dependency to independence. One example of employment support is the TWP, or the Trial Work Period, in which you can receive full benefits regardless of your employment income, while you are ‘trying out’ working. Another useful aspect of TTW is, for instance, if your job doesn’t work out and you need to return to disability income, you can do so without penalty or having to reapply for SSDI. It is a winning strategy for becoming independent and earning money.

Another common question is, “If I work, won’t that mean that I will get less money each month?” The simple answer is ‘no.’ By the way, the average amount of monthly SSDI awarded is $950. Here is an oversimplified example:

1) Let’s say you receive $900/month from SSDI.

2) Let’s say you want a job that pays you $1200/ month

3) SSDI takes 50%, so you would still receive earnings from your job of: $600/month

4) You keep the difference of your SSDI income and job earnings: $900-$600= $300

5) Add the received SSDI amount to your original earnings: $300 + $1200= $1500

6) Working gives you: $1500/month. Not working gives you: $900/month

$600 more per month sounds good to me!

As of June 2011, countless SSDI recipients reported that the TTW program was beneficial. SSDI beneficiaries had a 265% increase in employment since 2008—that’s phenomenal! In those three years, the TTW program has saved over $91 million of SSDI benefits! That’s a big chunk of change.

To find out more information on the Ticket to Work program and benefits, sign up for the next free Work Incentives online seminar on July 27, 2011 3pm (EST). If you can’t make it, don’t worry, you can watch, listen, or read the information found online after the seminar is over.

Do any  of you have experience with Ticket to Work? Tell us about it.

I was able to experience firsthand the pure rudeness and judgmental behavior toward my own disability.  I was on vacation in Morro Bay, CA and parked along the street in 2 hour parking;  I put up my handicapped placard.  As most of you know, you can put your handicapped card up and park all day regardless of the time limit.  I was having difficulty getting around that day, and was gone 2 hours and 10 minutes.  When I got back to the truck, I was worn out and in major pain; all I wanted to do was rest.  There was a police officer standing at my truck. This grouchy, nasty, hateful lady called the police on me.  The wicked woman was telling him that I wasn’t disabled and that I had parked 10 minutes too long.  I showed the officer my license, the handicapped paper work and so forth.  All the while, this lady was calling me names and accusing me of lying about being handicapped. She was acting like I was taking away customers from going into her store, but many other store owners stepped out and helped me. I wasn’t the only ‘lucky’ person this woman has done this too; many others have been subject to her wrath.  I was judged and criticized all because I rightfully used handicapped parking for the invisible disability I deal with every day.

When I am feeling good, I DO NOT park in a handicapped space.  I actually park way outside the parking lot so I can get my exercise.  But when I’m flared up and in major pain I do use the handicapped parking.  I just don’t think I should get insulted like I did all because I’m young and my illness is invisible. Handicapped parking has a purpose.  Let’s not forget it that.  There is a reason it’s there; to accommodate those with disabilities, afflictions, diseases or illnesses.  Shame on those who use the system and park in handicapped spaces when they don’t have a placard.  Shame on those who judge the handicapped people who truly need it.

I would like to pick your brain.  How much criticizing do we have to take from those cruel people accusing those of us with invisible illness that we aren’t sick and we shouldn’t be parking in handicapped parking?  Should we just ignore and go on about our business?  Or at some point should we say something? What’s your opinion?  Would love to know…

New psychiatric and medical diagnoses are decided by a collective of professionals in the field. Why do new conditions arise? One reason is that ideas about how the mind and body operate are always shifting as we acquire new information. Opinions change, fresh ideas flourish, and new categorizations are created, so change happens in medicine all the time.

Classification of diseases or conditions includes autoimmune disorders, learning disabilities, cancers, sexually infectious diseases (yes, they are no longer classified as STD’s, sexually transmitted diseases), and so on. Categorizations help identify characteristics within a group, therefore, offering basic assumptions about the condition. Some conditions are named after characteristics or symptoms, such as Tonsillitis (inflammation of the tonsils) or Chronic Fatigue Syndrome (for obvious reasons); whereas, others are named after an individual who discovered the condition, such as with Asperger’s syndrome (after Hans Asperger) or Alzheimer disease (after Alois Alzheimer). With the proper patient history, a diagnosis is made, and care can begin. The physician, using his or her education and life experience, decides proper treatment. Therefore, it is imperative that categorizations are agreed upon within the medical community, so that care providers aren’t reinventing the wheel every time a patient walks in.

Grouping has downsides, too. By lumping people, diseases, or conditions into groups, it takes the individuality out of the equation. Assumptions and generalizations may not always be accurate. What happens when a patient has been prescribed antidepressants for depression, when, later, they are diagnosed with Bipolar disorder? The misdiagnosis could potentially be deadly, since the treatment options between depression and Bipolar disorder are completely different. What about young people who have had a stroke, but are pigeonholed as unlikely stroke sufferers because of age and, therefore, deprived of life-saving treatments (I am speaking from personal experience, here)? Sometimes classifying people, based on general assumptions, can be injurious to their care.

Of course, medicine is not a black and white science. Second opinions are just that—opinions! The notion that you need a second opinion should say something about the scientific field; there is no truly right or wrong diagnosis. Reasons for getting other opinions vary: to get a consensus on a treatment, to disprove another physician’s diagnosis, or to see a specialized doctor more familiar with the condition. Getting another opinion is a great way to ease troubled minds.

Too much decision making is placed into physicians’ hands, and we forget that we are ultimately, the ones in charge of our own health care. We have to decide how we want our health monitored, and if we need a diagnosis in order to better care for ourselves. So, is it important for you to have a diagnosis when it comes to your physical or mental health?

My symptoms started when I was twenty and my symptoms were normal, so nobody was expecting my illness to progress to something worse.  I had my two kids and the doctors said it was female’s problems, so I had a hysterectomy by the age of 25.  In the mean time, I was losing functions of my body, such as my bladder and colon.  That’s where some of the other diagnoses started coming in place.    The symptoms started growing rapidly and the doctors were clueless.  The doctors were in complete awe because no matter how many times they tested my organs, the tests always came back stating that, in fact, they weren’t working properly, and soon, my organs were going to be paralyzed.  In the meantime, the disease continued to spread to my small and large intestines and esophagus.   By this time, they removed my appendix and gallbladder.  I was sent to specialists all over California to be studied in hopes for answers and a cure.  My medical files were put in a database for doctors all over the world to study, since I was such a unique case.

My diagnosis is Idiopathic Autonomic Neuropathy.  And to date, I am the only person in the world known to have it.  The way it was explained to me was IDIOPATHIC= it is unidentified, and AUTONOMIC= everything that is supposed to work without me thinking about it.  Over the years, my organs started slowing down their functions until eventually they were paralyzed.

One thing all the doctors agreed on, was people with Autonomic Neuropathy typically are born with type A diabetes, and have lived with it their entire life, struggling to keep their blood sugar under control.  It certainly doesn’t happen to someone such as me, where I don’t have type A diabetes.

The doctors started suggesting going on a ‘scavenger hunt,’ removing my bladder, colon, and cutting out more than half of my intestines.  Finally, I saw a doctor at UCLA and he made a promise that he wouldn’t let anybody take any other organs from me, unless it was proven to be a life-and-death situation.

I had put too much trust in doctors, and they were taking body parts out, left and right just to see if, by chance, that was what the problem was.  Honestly, I felt like an old damaged beat up car taken to a scam-artist mechanic; they tell you, “Oh, it’s your alternator,” so you pay for a new alternator thinking your car is going to be fixed.  NOT!  Then, they say it’s a battery, so you do the same thing, but that’s not the problem, either.  They rip out all the computer components in the car and fuel injection, yet they keep promising you after they do this, that your car will be “healed,” but the truth is that it gets “sicker.”

I withdrew from everyone, and became distant because everyone thought it was all in my head.  It made me question my sanity, “Is this in my head?”  People called me a drug addict, because I took so much medication.

My doctor at UCLA wanted to try something new and promised me he wouldn’t cut anything out of my body. He said he would put a pacemaker in; I was going to be the very FIRST person to have this procedure done!  I knew it was a trial and error procedure.  The way I saw it was that I had nothing to lose and everything to gain if it worked; I would have a new beginning.  If it didn’t work, then the doctor would simply go in and detach the pacemaker and I would be exactly in the same situation as I was before the surgery.  Granted, I might not be as normal as the next person might, but who can really say what normal really is.

I was thrilled that I didn’t have to use a catheter up to five times a day or use an enema 2 to 3 times a day.  Things are still sluggish on my insides and I still have episodes where I get septic poisoning and have episodes of major pain, but, I’m managing and it’s something to work with.  I’m glad to be part of history, because I am the very first person to receive such a pacemaker for this purpose.  Within the eight years after my procedure, doctors have performed 50 others.

Right now, after eight years after my pacemaker was inserted, it stopped working, so doctors are getting ready to put in a new one.  I’m looking forward to getting my new pacemaker because I’m ready to be back, good as new.  It’s truly been a blessing for me.

Since my procedure, doctors have called me from all over the world asking me questions about my symptoms, treatments and their effects.  My doctor shared my contact number with other patients like me, so we can exchange our stories to see if we have similar symptoms.  The people I have talked to are at the end of their wits, just as I was. Other people like me have been scammed into medical ‘treatments,’ and are burned out, with no hope.  They could talk to me, the girl who threw her hands up and said, “I’m all yours doctor, and I promise I will not let another knife-happy doctor start cutting away parts body parts that I really need.”  I put my trust in my doctor at UCLA, and promised him that even though I’m an experimental case, I wouldn’t make any decisions without him.

Technology has come a long way.  It’s hard to believe that I’m actually the first person in the world to have this disease, much less be the first one to have a doctor experiment by putting a pacemaker in my intestines to shock my organs, so I can live the best life I possibly can.

It took YEARS and YEARS to come up with my medical label, so I want to share with people because if it helps one person, I feel like I’ve accomplished something.  I don’t mind sharing my experience because I’m hoping my story may touch someone and help inspire doctors to do more research to help others.

‘You Look Great’ and Other Lies

By BRUCE FEILER

The Spoon Theory written by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

I wanted to speak to the daughter so badly, but I soon learned that this young lady had a taken a bad fall down steps and ever since then, she hadn’t been the same carefree girl. I felt awful. My stomach turned in knots. I hope that the lady I met so long ago and so far away, is fine now with a loving family of her own.

I knew how the young lady felt because all of my young life people looked at me with sorrow and tears swarming, while I stood minding my own business. I know how to live now with joy overflowing because I know that life is not easy for anyone—disabled, or not. My hope is for all of you, no matter what circumstance you are given, you keep on living with hope and strength. You can overcome anything in life.

Was there ever a time where you met someone you felt like you could relate to because of a disability? Who was that person, and how did that affect how you live life today? I would love to hear your story.

For some people, it doesn’t matter whether the therapist has lived their situation or not, the only thing that is relevant is receiving effective tools from the therapist. Besides, no one has had the exact experiences as another person, this due to genetics, environment, and our upbringing, so it would be unlikely to find a therapist with specific requirements matching yours. A reason why someone would not want someone with a similar background is that they need someone to be objective and distanced. Perhaps having someone with similar experiences would hit too close to home and create distress.

Without bias or judgment, a therapist’s job is to assist the patient in finding effective coping and problem solving strategies. He or she guides the patient to finding his or her own solutions. If a therapist’s style works and the patient finds the treatment effective and useful, then whether the therapist has a similar background is irrelevant. This system works for many people, and because we don’t initially choose the therapist we work with, sometimes the first one we work with is just what we need, but not always.

Some find it useful to have a therapist with similar personal experiences. By nature, we tend to gravitate toward others with related interests, worldviews, and morals; so naturally, we might want that in a professional relationship.

Another idea to consider is trust. Individuals who have had traumatic experiences may feel more comfortable working with someone who intimately knows the situation. Those who aren’t very trusting in general, may have a need for a relationship in which they feel safe. For instance, individuals with addictions; sometimes it really helps patients to have a therapist who has had personal experience with addiction. Benefits to this include sharing of effective strategies and resources, a sense of trust that the therapist knows what they are going through, and the ability for the patient to see a recovering addict who has had successful treatment.

When working with someone with a similar background to you, what happens when the professional boundary is crossed? Does the relationship continue, does it change, or does it end? When crossing moral and ethical boundaries, this could harm the relationship, and ultimately, the client. It is the responsibility of the therapist to ensure the relationship remains professional. The Code of Ethics is a professional standard in which a therapist abides by. In simpler terms, the therapist must always have the patient’s best interest in mind. Unsettling feelings can occur when a client feels they are in a compromised situation. When that happens, a change needs to occur by discussing it with the therapist. Doing this is a great way to practice self-advocacy.

Choosing a different therapist if the relationship is not working out well is a perfectly legitimate option. Every therapist, just like anyone else, has his or her own way of communicating, their own history, and education in which to draw from, so it is likely that a patient won’t be able to work with every type of therapist.

When you work with a professional, do you prefer someone who has a similar background as you, or do you feel there are other qualities that supersede?

Two women brought this case to the Supreme Court from Georgia, with assistance from Atlanta Legal Aid. Lois Curtis and Elaine Wilson spent many years in and out of institutions even though it was possible and more cost effective for them to live in the community of their choice. Neither of them thrived in these places. Lois was determined to get out and with the help of Sue Jamieson from Atlanta Legal Aid, Lois was eventually able to take her case to court to win her freedom.

Lois and Sue filed the initial case and while looking for cases similar to Lois’, found Elaine Wilson.  Together, these three women were able to take their case to the highest court.  Elaine and Lois initially won the case in the lower courts. The ruling stated that Georgia violated the integration mandate under the ADA. The integration mandate states that services need to be provided “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” The Georgia Department of Human Resources appealed the decision of the 11^th Circuit Court. The fear from the state was that all state institutions would be closed, disrupting Georgia financially. There was support for Georgia’s position; originally, 26 states signed on in favor of Georgia’s position. Advocacy and educational efforts on behalf of various disability rights groups eventually knocked this number down to seven.  Lois and Elaine had the support of many states and advocacy groups and even the Solicitor General of the US who stated, “The unjustified segregation of people in institutions, when community placement is appropriate, constitutes a form of discrimination prohibited by Title II [of the ADA].”

On June 22, 1999, in a 6-3 ruling, the Supreme Court ruled in favor of Lois Curtis and Elaine Wilson.  Ruth Bader Ginsburg delivered the opinion of the court and stated:

“States are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.”

Thanks to this ruling, it is now law that states must provide community based supports when possible.  Forced institutionalization, at least ideally, would be a thing of the past.  The case is seen as being one of the most important cases regarding people with disabilities.  Every state is required, by law, to have an Olmstead Committee and Olmstead planner that are in charge of enforcing this decision.  Sadly, many states are falling behind on their obligations to people with disabilities.  Currently Georgia’s governor has not appointed a new Olmstead Commissioner and so the efforts of de-institutionalizing people are stagnating.  In order to ensure that people with disabilities can live independently in their communities, we must be politically active and advocate for our elected representatives to do the right thing.

Lois Curtis is the surviving Plaintiff in the Olmstead case and is living happily in her community where she works as an advocate for people with disabilities and creates works of art that help her thrive in the community she longed to be a part of for so many years.  She is active in the Atlanta area frequently working with disABILITY LINK, the Peer Support and Wellness Center and local chapter of ADAPT and People 1^st.

Learn more about Lois or purchase some of her art

Learn more about disABILITY LINK and visit us on Facebook

This amazing story looks at the life of a woman with a disability, raising her four-year-old son, and enjoying life. She shows us how her acquired disability takes an enormous amount of energy and a new acceptance of her limitations and strengths; she tells how she was able to move on from her disability. When she first had her accident, her doctors told her she would never be able to feel anything; however, in about a year’s time, she regained some of the feeling in her toes and also has limited function in her arms. In the video, she stated, “My life was like a light switch that just flipped. I went from knowing myself as one person, to having to relearn to a whole new person. I switched into…survival mode. I had to relearn everything.”

Michelle states that after her injury she had to discover the ‘new’ Michelle. On a daily basis, Michelle endures hardship; she is unable to sit upright in her wheelchair and needs around the clock care in order to get dressed, be lifted into her wheelchair, and eat. Paralyzed from the neck down, she is fully dependent on her live-in caretaker for her basic needs, including transportation. Michelle passes out on occasion, requires medication for frequent bladder infections, and there is a very possible risk that she won’t live long enough to see her son grow up. She doesn’t let these obstacles deter her from living life. Michelle dates, goes out with her friends, has birthday parties for her son, and is the life of the party. Michelle utilizes a video camera and radio to talk to her son from her bedroom. In addition, she uses other assistive technology devices and adaptive equipment so she can use the internet, brush her hair, hold a telephone receiver, and put on her own makeup.

This documentary is a great example of how strong-will and determination is a prerequisite in living a productive and meaningful life, with or without having a disability. In the face of adversity, Michelle shows us that even though she lives with a disability, she is able to do the things she always dreamed of: getting married, giving birth, raising her son, and having loving people surround her. Here is a woman, who, in spite of having a disability, learned how to make the best of her situation and accept her ‘new’ self. Michelle is a great example of learning how to be our best self, and not allowing disability to prevent us from moving forward in life.

I contemplated my worry and considered where it might have stemmed from. At first, I couldn’t think of what could possibly make me worry about this particular editorial so much. I know my strengths; others have praised me on my writing and research skills, and above all else, I enjoy what I do: educating and helping through writing. So what was the deal with my worry? It seemed irrational to be so concerned when I know, based on experience that everything turns out fine, for the most part.

My feelings told me one thing, “you will fail.” However, my mind told me, “that’s irrational thinking; you have no proof that will happen.”

Some time ago, I learned a wonderful mantra: your feelings are like a wave that comes and goes. Whenever I worry, go through depressions, or experience other feelings, I remember that mantra. Yes, it is true, feelings don’t last,—they are temporary, just like a wave. Sometimes in times of deep emotion, or as in this case, anxiety, I am wrapped up in the feeling of that moment and it is difficult for me to get out of it. But, eventually, I do get out.

Some worry can be good. Good worry lets you know you need something that you aren’t getting; it can protect you from harm, and encourage you to take action. However, when worry gets excessive, it can be damaging mentally and even physically, such as in panic or high blood pressure. Worry in which we sit and think and think and think, without problem solving, creates more stress and worrying about worry!

When I head into that downward spiral, I have to remind myself, sometimes aloud, that my incessant thinking isn’t useful and I need to pull myself out of the worry mode. I make a plan. First, I identify the problem and project the outcome of what I want to happen; then, it’s as if I was filling out a flow-chart with all the steps in between. For me, having a systematic plan is useful because I can see exactly how to get to my ‘destination.’ It’s a great way for me to rid myself of worry, start acting, and complete my goals. More often than not, my worries disappear when I take action. It’s a funny thing, even the act of writing this editorial, I feel more confident and productive, and feel like I can move on from the worry. Mission accomplished!

The cost of food is rising at an alarming rate. The Bureau of Labor Statistics (BLS) numbers for May 2011 show a climate of continually rising prices across a wide swath of food categories—a tally of 76 items ranging from ground beef to soda to dairy products. Measuring the past month’s performance, the BLS found increased prices on 45 of the items it monitors. But over the past year, the trend is much stronger, with 66 of the 76 items being higher in price. Healthy foods (and exercise) are our best and least costly weapons against disease and illness. The inability to buy healthy foods will be the first step on the road to serious health consequences for many of us.

The least expensive way to battle this specter is to grow your own veggies. That’s right. You can save a bundle, planting and growing a wide variety of foods right in your own back yard, or recruit your neighbors and build a community garden. For more information on how to do it, go to, Frugal Dad or Sustainable Urban Gardens.

Our next best weapon in the fight against illness is preventative care. According to the American Medical Association, the idea of seeing a doctor before you get sick really gained traction over the last decade. The result has been a drastic reduction in illness and injury. But in today’s economy, millions no longer have access to those programs. In fact, The Commonwealth Fund reported that 27 million U.S. women went without health insurance in 2010 due to high costs. And, because they couldn’t afford it, 48% of all women skipped doctor visits, tests, and treatments or didn’t fill a prescription. Men have always been reluctant to take advantage of preventative care, but as the population ages, they are coming around, though the growing lack of access has stymied the trend. However, there are resources available to assist in obtaining affordable and even free preventative care.

In March 2010, President Obama signed the Affordable Care Act. The overall goal of this legislation was to increase access to quality, affordable healthcare for uninsured individuals and their families. Through the new law, being implemented in phases over the next several years, health insurance will extend to approximately 32 million Americans.

In September 2010, several provisions of the Act went into effect (the remaining provisions will roll out gradually through 2014) and may have an impact on you and your family; these include:

• Providing access to insurance for individuals with pre-existing conditions
• Extending coverage for young adults – up to age 26 – on their parents’ plans
• Providing free preventative care, such as immunizations and mammograms
• Ending lifetime and most annual limits to care

Many private and public organizations are also offering free access to discount prescriptions available through over 60,000 participating regional and national Pharmacy outlets as well as local independent pharmacies. One of the larger programs offered is through Financial Destinations Inc. In 2010, FDI saved Americans over $7 million via its free discount prescription card, and is on pace to save much more this year. The FDI card is available to anyone, insured or not, and it never expires because it’s not insurance. Some of the benefits enjoyed by those using the card are:

• Savings of up 85% on most prescriptions and some medical devices at over 60,000 pharmacies!
• Absolutely NO fees, premiums, or membership dues charged, ever. The FDI Discount
• Prescription Card totally free!
• One card covers your whole family. Even some pet medications qualify for a discount!
• You can give these cards away and actually get paid every time they are used!

There are many other healthcare providers offering similar programs. A couple of very good ones include the Partnership for Prescription Assistance, and Needy Meds

Recently, I went to the movies and decided to use the accessible restroom. A man was just coming out as I entered; he saw me go in, but for some reason reached in before I closed the door to flip off the lights. I guess he figured I didn’t need it.  I stood there for a second in the darkness with a call of: “Really!?” I was baffled, but the man walked away as if nothing was amiss.  I guess I was both blind and invisible for a moment.

There are some people who probably mean well, but I’d prefer if they just didn’t bother; invisibility would be a blessing in some of these cases.  I was once on my way to work, when a Marta (Atlanta’s mass transit) policeman tried to “rescue” me from the stairs that I was clearly slowing to walk down them. In order to “help” me, he grabbed my hoodie and jerked back, unannounced, which caused me to spin around to get free. I almost fell backwards down the same stairs he was trying to keep me from going down.  He was confused when I scowled at him. Pushing me down the stairs would have been more direct and helpful than making me think I was getting mugged at 7:30 in the morning.

Finally, there are the religious pedestrians/mass transit users/patrons. Many times I’ve been asked if people could pray my “affliction” away. I smile politely and say “no.” It’s easier and less socially awkward in the long run.

Do you have any “did that just happen?” moments? Feel free to share in the comments below.  I love stories and experiences like these, annoying as they are in the present, I can generally laugh about them afterwards.

“If there is no passion in your life, then have you really lived? Find your passion, whatever it may be. Become it, and let it become you and you will find great things happen FOR you, TO you and BECAUSE of you.” –T. Alan Armstrong

Richards (@apothecaryfilms), an ILWAD member, realized his passion for storytelling and human interest while stuck behind a computer as a movie visual effects artist. After having such success on films such as Happy Feet, The Incredibles, and Avatar, Richards realized he was working in a dream world instead of living out his true life dream.   The exotic fantasy world he was creating could not take the place of the real world he was missing out on and no longer connected too.  In 2006, he decided to make his dream a reality and created his own independent film company, Apothecary Films. His intense love of people and hearing their stories was the focus when creating his film company.

For the past four years, Richards has been fulfilling his passion by traveling the world and creating awe-inspiring documentaries.  His uplifting films often showcase people facing life altering adversity who find joy and acceptance through participation in the performing arts.  Being a huge proponent of the arts, Ben is continuously inspired by the overwhelming sense of healing that the arts have on the human soul.

I caught up with Ben Richards to chat about his jet-setting career, the current films he has in the works, and more!

M: Tell me a little about Apothecary films?

B: I started Apothecary Films in 2006 because the more I traveled the world, the more I realized there were really important stories that weren’t being told. I have always been interested in the arts and the more I traveled in poor countries, the more I realized what a vital role the arts play in helping people escape the reality of their poverty or whatever situation is afflicting them. I didn’t consciously set out to make films only on these topics but I have found myself drawn most strongly to this area. The first documentary I made focused on Cambodians recovering from the scars of civil war by reconnecting with their art and culture, and more recently in Slovakia I have focused on a group of homeless and disabled people being transformed by the healing power of the performing arts.

M: You have quite an impressive background in the field of 3-D visual effects and design, consulting on popular films like The Incredibles, Avatar, The Lord of the Rings trilogy and Happy Feet, to name a few.  What made you want to transition into the role of independent filmmaker?

B: It’s definitely not your average story, many people when they start achieving this level of success go further and further into it but I actually got quite turned off when working on such big films. It was hugely impressive what was being done from a technological point of view but if you watch the end credits for Avatar you will see that they are almost as long as the film itself and what this translates to is thousands of people sitting in front of computers for thousands of hours, about as far away from real life stories as possible. The deeper I got into the technology field, the more disconnected I felt from the real world. I love the medium of film and wanted to continue working in this field and thought documentaries were the perfect way to fulfill many of my desires; travel, immersion in other cultures, film and the arts.

M: How did you get involved in working on films about people with disabilities?  Tell me about the work you are now doing in Slovakia?

B: With the advent of the internet and cheaper global travel, the world has become a really small place. I was on a business trip to Montreal via New York and spent the weekend there with an Argentinian friend I knew from Australia. I met a Czech friend of hers and told her about my film in Cambodia and how the arts can really help people in need. She told me about a Slovak friend of hers doing theatre with homeless and disabled people and a few years later when I was living in London I saw it as the perfect chance to go there and meet the team and shoot my first film. A year later, I moved to Slovakia to shoot another film that would delve deeper into these people’s lives and actually ended up becoming a member of the NGO and a part time social worker, which has been immensely satisfying for me.

M: What types of disabilities do those in the theater group have?

B: We have a broad definition of “disabled” in the theatre, and consider that everyone has some kind of disability and it is this that makes us human, that and the ability to help those around us. Some of our homeless actors have social disabilities that arose due to problems with alcohol, drugs, or mental illness, both permanent and temporary. Sadly, some disabled people have no family or support groups and end up homeless, which is the case for 3 women we work with. We also have a few actors with cerebral palsy and probably the most inspirational member of our team is Veronica, who was born with no arms, stands just over 2 feet tall, and kicks the butt of anyone who is unnecessarily down about their situation. I think one of the reasons the actors so readily accepted me into their group was that I suffer from a language disability, which is something I am overcoming as they help me learn to speak their language.

M: Do you plan to do more films on people with disabilities? Possibly in the U.S. or other countries?

B: I have a few ideas that I would like to pursue. One is with a disabled friend I met during my ‘technology years’ doing presentations in Australia. He suffers from spinal muscular dystrophy and we met when I was giving a talk in his home town of Melbourne. At the time he was studying multimedia and now holds an advanced diploma which I find incredible considering he has no use of his arms or legs and uses his chin to interface with his computer. The work that he and I both do is challenging enough even with the full use of your body so his story really inspired me. We have been friends on Facebook for about 6 years now and what I find unique about his story is his virtual personas, the way he perceives himself on the internet, in virtual worlds with a fully functioning and muscular body. It was at this point that I realized the importance of virtual worlds not just for the physically disabled, but also people suffering from social phobias that live out satisfying lives in virtual spaces.

M: What have been some of your favorite projects to work on?

B: Without a doubt being in Slovakia and working in the theatre has been the most profoundly important project for me. As I mentioned it started out as a film but the actors and everyone involved affected me so much that I became involved far beyond the film and now don’t know what I would do without it. It has opened my eyes to a new world and through it I have met so many important and wonderful people who people society, love, peace and their fellow man above our largely troubled, money driven and materialistic world.

M: Do you still do any work in graphic design or visual effects?

B: Unfortunately, making films and being a social worker doesn’t pay the bills and to date has only cost me a lot of money so to keep the bills paid and fresh tapes in my camera I do still work in the visual effects world, mostly as a supervisor and I also have the chance to work as a professional photographer which I thoroughly enjoy.

M: What do you feel is the most rewarding aspect of your job?

B: There are many rewarding aspects of my job and many more things I hope to achieve over time. If I can change people’s perceptions about what people are capable of then this is achieving a bigger goal and I do hope many people watch my film and change their attitudes towards either homeless or disabled people but the most directly rewarding aspect is empowering my subjects who at one time felt they were on the margins of society and not useful to anyone. These people entertain others in the theatre and through my films and together we change the world for the better a little bit at a time. Seeing the pride on their faces when an audience applauds their performance makes me very emotional and more than once this moment has brought tears to my eyes.

M: What current and upcoming projects do you have in the works?

B: In terms of film I have a lot of ideas but have to stay focused on my current film Haiku, you can see a trailer on my webpage, Apothecary Films, and at this stage I am trying to raise the money to complete it. So far, I have spent 2 years working on it and am unable to continue without some financial support. I am looking into funding bodies and am looking for donations of any size, which will result in special thanks in the film credits. In the theatre, however, we are producing a very special play based on a book written by one of our homeless and mentally ill women. She is in her 60s and lived an amazing life. She has been very rich, in and out of mental hospitals with all kinds of horrible experimental treatments, had and lost a family and finally 5 years ago became homeless. Her book discusses many troubling times in her life and we have spent the last few months gathering everyone’s experiences with mental institutes or the way they may have been treated because of physical disabilities and incorporating all of this into the play. We have yet to introduce the script, but even in these early days, we can see it is going to be the most powerful play we have produced.

M: What do you love about ilivewithadisability, and what drew you to the site?

B: What I love about ILWAD is the openness of the community and how welcoming everyone is. It provides a platform for self-expression and the opportunity to discuss issues that people would not feel comfortable discussing on other social network sites. It is really a special safe haven on the internet, a virtual space unlike any physical space with no illusions; we all know that our friends on ILWAD either are disabled or have someone special in their lives with a disability, so there is no shame or hiding of these facts. [ILWAD is] just people connecting and enriching each others lives through these connections.

Colleen (@gr33ncolleen), a member of our beloved ILWAD, has reached out to us to help spread the word,

“As an above knee amputee it was hard. The Prosthetic Outreach Foundation has a sustainable program to provide prosthetics to amputees in developing countries. I am walking another 100 miles starting June 17th and I’m looking for other disabled folks to do the same thing in their communities.”

Colleen shares her story,

I am Colleen Haggerty, 51 years old, the mother of two teenagers and I live in Bellingham, Washington. In my twenties I was quite active and enjoyed backpacking, skiing and sea kayaking. However, for the last 33 years I have been an above knee amputee. After I had children, my activity level waned and my aging body starting to lose function. In 2010 I developed a walking campaign.

My goal was to walk 100 miles in 100 days so I could support the Prosthetics Outreach Foundation [POF] in achieving their mission of improving the mobility of children and adults in developing countries. I wanted to raise $30,000 to fund 100 legs through the Prosthetics Outreach Foundation. Walking a mile a day also helped me to regain my mobility!

To learn more about Colleen and her work, or if you are interested in helping out Colleen and the POF by starting your own  campaign, you can download a Toolkit, and create your own personal fundraising page.

View Colleen’s Blog to read more about how her walking campaign in 2010 impacted her life. Thank you Colleen for bringing awareness and hope to those in need of prosthetics around the world!

Say, for example, you are in a foul mood and you are at a party. What do you do about it? You have some options: one being to leave the situation, a different option would be attending the party in a bad mood, and another would be to move past it.

Experiencing feelings and acting on them are completely different. In anger, there are feelings of pain or frustration, but one doesn’t necessarily need to act on those feelings by throwing things or yelling at the top of their lungs (well, at least, mature adults don’t do these things). Acknowledging that you are in a particular mood is a fantastic skill, allowing yourself to solve problems effectively. Knowing how to recognize feelings is the key, and it takes a lot of work and practice.

Once you recognize what is happening, then it’s time to decide what your next action will be. No matter how much someone has upset you or things aren’t going the way you planned, you only have control over yourself. You can’t change what others say to you, or how other people act, or even what people think. Given that, in order to change your mood, you have to decide what you want the end result to be. Do you want to stay pissed off and be in a bad mood that will possibly affect the people around you? Or, do you want to acknowledge your feelings, deal with the original problem, and find a way to have a good time? The great thing is that you have all the control. No one else can tell you to be in a better mood, you have to want it, and you have to grab it.

**Has there been a time when you were upset but it wasn’t appropriate for you to act out on those feelings? How were you able to move past those feelings in order to enjoy yourself?

There are people and organizations that actively fight for the inclusion and freedom of people with disabilities; some work to empower individuals and give access to resources in their community, others work as a group to achieve a goal through “proper” channels or civil disobedience.

I personally, work for a center that helps individuals with disabilities with empowerment and assists with gaining, or regaining their independence.  We are a powerful force in the lives of these individuals, but without proper advocacy and change we will not be able to help everyone.  Organizations like People First, a group that formed from a collective frustration of being regarded as disabled first and people second, help with self-advocacy, normally, in a peaceful way.  Then, there are groups that take a more direct approach; ADAPT being one of the more visible ones.  During ADAPT actions, people are routinely arrested for being civilly disobedient, whether it’s blocking the parking deck exit for HUD headquarters, shutting down the Republican headquarters in Wisconsin or lying across the inaccessible capitol steps in Atlanta. ADAPT makes its point by engaging in direct, non-violent action.  They force people to pay attention by making it impossible to ignore them.

I have always wanted to partake in an ADAPT action.  One of my coworkers has been to several, but has never made the decision to go to jail.  Arrests are common during these actions and I often wonder if I would be willing to be arrested for civil disobedience.  I want to say I would, if only for the experience, but I suppose I’d have to be in that position to say for sure.  Maybe I’ll find out at the next ADAPT action in DC this Fall.

To learn more about ADAPT, visit:

http://www.adapt.org/

Visit disABILITY LINK online at:

www.disABILITYLINK.org

Twitter: @disABILITYLINK

Facebook: www.facebook.com/disABILITYLINK

Ed’s disability stemmed from a contraction of polio as a teenager.  This left him with very limited motion as well as the reliance on a respirator to breathe.  His iron lung, which weighed around 800 pounds, could not be held in any of the on-campus housing so he was forced to live in Cowell Hall, the campus medical facility. His brother acted as his personal care attendant, often taking him to class in a manual wheelchair.  Ed may have been the first student admitted with a significant disability, but he would not be the last.

The following year, another student with a significant disability, John Hessler, was admitted to the University. As the number of students with disabilities grew, late night meetings and talks developed into strategies for how they could best advocate for themselves in living independently both on campus and in the surrounding community.

These “talks” with his fellow students would be the beginnings of the Independent Living and Disability Rights movements. There was a realization that materialized; the struggle for independence was not a medical issue, it was a civil rights issue. The radical idea that a person with a disability could manage their life emerged from Ed’s involvement with Gini Laurie in a publication that would eventually be named, The “Rehabilitation Gazette.” It was here, that the idea of relying on support from peers instead of professionals emerged.

The group, “The Rolling Quads,” was formed with its primary goal of ‘accessibility.’ The group advocated for the removal of barriers as well as the integration of support services for students who were labeled, “severely disabled.” In addition, “The Rolling Quads” also advocated for personal attendant services for students with severe disabilities attending school.  Ed’s activism helped form a new movement that radically changed how people with disabilities viewed themselves. In a communication with Gini Laurie in 1970, he stated,

“I’m tired of well meaning non-cripples with their stereotypes of what I can and cannot do. Directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the star to something big — cripple power.”  -Ed Roberts

This new concept of people with disabilities using self-determination and independence help fight the notion that people with disabilities are passive recipients of charity and are unable to manage their lives. In 1972, with very little funding, Ed opened the first Center for Independent Living (CIL). These centers embrace peer support, consumer control, civil rights, integration, equal access, advocacy, and dignity, which are core philosophies of the Independent Living and Disability Rights movements.

Aside from founding the first CIL and supporting numerous others, Ed worked as the director of the California Rehabilitation Agency for eight years and went on to found, with the support of others, the World Institute on Disability. Sadly, we lost Ed Roberts in March of 1995 at the age of 55. Being The Father of Independent Living, his legacy lives on in the forms of CILs across the world as well as in the opening of the Ed Roberts Campus in Berkeley, CA, a first of its kind, offering support and resources to people with disabilities and the organizations that support them.

Learn more about the Ed Roberts campus below:

http://edrobertscampus.org/index.php

Sometimes we allow others to dictate what we need, what we should do in life, and how we should act. We let others make decisions for us, instead of taking charge of our own lives; sometimes that seems easier than deciding things on our own. Well, no more! Years of doing this can lead to unhappiness and often times, low self-esteem.

Time, experience, and learning from the past, help us to create our future environment. We learn what makes us feel comfortable and confident. However, what comforts us often is not the same thing that builds our confidence. Performing the same actions or not taking charge of attaining what we need doesn’t promote growth. What promotes growth is change.

By taking chances, you learn about yourself; you learn how to care for yourself and get what you need by standing up for what you believe in. When I make a request from someone, they have the option of saying “yes” or “no.” However, if I never ask the question, the answer will definitely be “no.” The chance that my request will be granted is 50%. I like those odds. On the other hand, if I never took the risk to ask for what I wanted, then my chance of getting what I want would be 0%. Even if the other person says no, there may be an opportunity to negotiate and come up with an alternate solution to please both people.

The next time you feel you need something, go for it! The worst thing that can happen is the person denying your request. It’s always a disappointment when a request is turned down, but think of it like this: you were brave enough to try something new, and you stood up for what you believe in; you can be proud of yourself for taking care of your needs. Get what you need or want, and ask! If you never ask for it, who is going to do it for you?

Is there an example in your life where you have had to ask for something, but were afraid to ask? How did you overcome that fear, and what was the result of your standing up for yourself?

This decision evolved from two weeks earlier, after some of the best racing I had ever seen. At Stotesbury regatta, the largest high school regatta in the world, the top boat was in sixth place, only two seconds behind the first boat. After the semi-final, the top five boats were all within 0.7 seconds of one another. It was amazing; the guys were racing and giving everything that they had.

The final was anyone’s race, and we had a shot to win the whole thing—something that we had not done since 1996, when two future Olympians were on the boat. The final came and it was the race that everyone came to watch; we got fifth place—eight seconds off first! What happened? The only explanation that makes any sense to me is that they underachieved. I know they tried hard; I know they gave everything they could, but there was more; they were missing a gear. It was great to finish in the top five, but they had a shot to be heroes, to do something amazing, and they did not do it. They underachieved. Does coaching have something to do with it? Was there too much pressure on them? How bad did they want it? These questions keep replaying themselves in my mind. We tried to find some speed over the next week for nationals, and we got tenth in the country. We did not even make the grand final. What happened? Underachieved.

Then, the team went to Disney World for the senior trip, and came back and let me know that they no longer wanted to go to Tennessee. They had good reasons, and I was not going to push back. They made their decision, it was not unanimous, but it was their decision. If one person does not have their total heart in it, the boat will lose seconds off their final time. We decided as a team not to go.

“Underachieved” is a word that carries a heavy meaning. It is pretty depressing to know that you could have done better, but you just didn’t. It is easier to talk about in sports, than in life, but it happens everywhere. When is the last time it happened to you? I hope you don’t let it happen again. You are strong and determined. Do your best at everything you put your mind to. You can be great. You can be a hero.

Many people who visit the site are in need of more information regarding their disability; they also may need some extra assistance coping and living with it. The site is a one-stop haven of everything needed on disabilities.

Not only does the site provide benefit information, health, transportation, emergency and many other necessities for assistance, but, it also has jobs, housing information and the latest news regarding disability laws and applications for grants.

This site was created with the disabled in mind. It not only provides information a person may be seeking, but also cuts down on the amount of calls and prevents unnecessary visits to the physical locations of the disability agencies. Disability.gov provides many resources to the disabled, their families and care givers. Users can create a personal profile tailored to their needs. It is a very interactive and social website; users can create and participate in discussions with others on the discussion board. The disability site is one that is run by the government to provide them with any news and changes that affect the disabled, veterans and their families. There is even a newsletter that is published on the site.

Think outside the box when networking. Once, I vacationed at a Bed and Breakfast and I met a woman at breakfast who worked in the same field I did; she referred me to a job opening! You never know where your next contact or job will be. Here are some other unlikely places you might consider:

1. There is the infamous job fair
2. Community events: health fairs, concerts, etc.
3. The place where you volunteer: don’t forget to tell them you are looking for work, otherwise, they will never know
4. Where you attend school
5. Trade shows
6. Wherever employers gather, such as business mixers or fundraising events

Here are the essentials for “working it” at a networking event:

1. Make business cards! I know what you are thinking, “I’m not working, so how can I have a business card?” However, think of it this way, if you don’t, how will employers contact you? So, what your card really is, is information for your contact to remember you by.
   • You definitely want your name, phone number, email address
   • Also, add a “job title,” such as, “Enthusiastic Sales Representative” or “Inspired Web Designer.”
   • Other things you might want to consider adding are your top 5 reasons someone would want to hire you, your education, special recognitions, or projects you’ve completed.
   • You are ‘selling’ yourself, just like a resume, except this is a 4-lined resume!
2. Give yourself a goal. For your first event, try talking to two or three employers. Don’t feel like you have to accomplish everything in one day. Do what’s comfortable. This is a learning experience, and the more you do it, the better you will become.
3. Practice. Practice how you will present yourself the days before your event. Make sure to have a basic script, and try not to veer off it too much. You want to be consideration of their time, but you want your time to be effective. Employers appreciate people who value their time.
4. Follow up. Hey, the employers spent time with you, and with any luck, you made a good impression. Don’t stop now! Within 48 hours of the event, you need to follow up with him or her and ‘remind’ them of who you are. You can briefly state your appreciation for the opportunity to chat with them, reiterate or restate what you discussed with them, and tell them your next step, such as, “I would love an opportunity to meet with you again regarding this career field, would you have some time next week to discuss that with me?” Always be polite, and professional. If you are emailing, use spell check, and NO slang (sorry, no “LOL”, either). If you leave a phone message, clearly speak your name and number.

Good luck! Remember to bring your business cards with you everywhere; you never know where your next networking event will be!

So how do I cope? I like to call it The Three Circles.

The First Circle

The First Circle is the most important one. It is the ‘safe zone,’ where everything and everyone within it is tried and true. Imagine yourself in the centre of a circle with enough space (not in any particular order) to put your family, doctors, therapists, your favourite things and anything and anyone you count on to survive and bring you happiness. Most importantly, your closest friends, the ones who really understand you, have seen you at your worst, yet still are dependable within this circle. The people in this circle predominantly need to give more than they take and as such are first in line to receive any giving on your part when you are able.

The Second Circle

Imagine a second circle that goes around the first. Inside this circle are your passions, responsibilities, hobbies, interests, goals etc. This circle nourishes and enriches your life. It adds colour and texture to an otherwise Spartan life. Indulge your senses and your mind.

The Third Circle

Again, imagine another circle around the first two. It represents the rest of your life. The friends that really don’t understand your condition and drain you so you are unable to keep and maintain the walls of the First and Second Circles. Even though they are nice people sadly, they can be toxic to you. It is important to remember it is nothing personal and you shouldn’t feel guilt when the time comes to place specific people or activities in this Third Circle. One of the difficulties with the Third Circle I found is that circumstances and people tend to change. It is the way of life. Numerous times, I have had to place people from the First Circle into the Third. Relationships gone wrong, friends moving on, or becoming resentful are all part of the highway of life. The upside to that is I have also been lucky enough to move people from the Third Circle to the First. Always keep an eye out for these possibilities. We want as rich a life as possible. Prepare to be surprised.

In the end, we can’t change our situation. It is important that we secure our position at the centre of the First Circle so we can continue to balance and maintain the others. This is survival 101.

Once you have established the circles, enjoy filling them in. Whenever things start to feel out of control, stop and close your eyes. Bring the image of the circles to your mind and see what is causing the problem. You may have put too many people in the First Circle or let someone from the Third Circle in too soon. Remember you are in control. You can rectify this. It does not come without some struggle and pain but the right things are always the hardest to do. It becomes easier in time to figure out who and what goes where and becomes second nature.

So get a pen, draw your three circles and fill them in.

It’s been awhile since I attended an in-person conference, so it was refreshing, and once it began, I felt right at home. Attending, networking, and sharing resources made me feel like an important part of my community. In addition, I connected with about 40 mental health professionals, consumers, and advocates.

I brought plenty of business cards (a must for any networking event) for promoting ILivewithADisability.com (ILWAD) and my writing and career counseling services, of course. As I introduced myself to the audience, I strategically mentioned my role in ILWAD and our mission, and the response was welcoming. People were very excited and I was pleasantly surprised that most everyone was interested in this fairly new concept for people with disabilities. One person even told me he had heard of us before, so I was thrilled. I’m hoping that everyone I met will go back to work and share the ILWAD resource with their clients, so we can get more readers and members, and support them in their desires to become and stay independent. We welcome, with open arms, all members, whether you have a disability, or are a supporter of someone who does.

Many of the participating organizations of the conference employ people who have mental health diagnoses in hopes they can offer their clients personal experience and provide encouragement. What a concept! I love that, and it makes complete sense; I would want to work with a counselor who made me feel comfortable.

One of the conference topics we discussed included discovering different learning and personality styles, in hopes of better understanding coworkers as well as clients. We all have to get along at work! In talking about employment and writing resumes, we reviewed some common soft skills (such as working well with others, having compassion, taking initiative, and being thorough). We compared those skills to ones you can learn on the job, such as, Microsoft Word or Photoshop, operating a cash register, driving a forklift, filing paperwork, and creating an office schedule. Reviewing what good customer services meant to our organizations and finding improvement within those services was another topic of discussion.

I am so glad that I had the opportunity to attend this conference and to be around so many supportive people. It was wonderful to feel a sense of community, share resources, and support one another in our own careers as well as sharing tips on assisting our clients.

If you live in California and would like to find out about the WWT services in your area, please follow the link below: http://www.workingwelltogether.org/dnn/

Here are some free learning resources for professionals as well as clients: http://workingwelltogether.org/dnn/Training/WWTCurricula.aspx

Wherever Justin Dart went, his ‘signature’ hat was sure to be with him. To this day, his hat still attends events in his absence. He was wearing it on the White House lawn the day the ADA (Americans with Disabilities Act) was signed by President Bush and it was atop his head whenever he was out rallying support for disability rights.

Dart, on numerous occasions, visited all fifty states, often at his personal expense, to spread the word about the ADA, Independent Living, disability rights, and the responsibility of everyone to vote. Dart and his wife were responsible for the largest turnout of people with disabilities to the voting booth. He wanted to spread the word about the importance of being politically active, at one point saying, “Get into politics as if your life depended on it. It does.” A message that is just as important today as it was back then.

His tireless advocacy led to many advances in the Disability Rights and Independent Living movements.  He envisioned a “Revolution of Empowerment” that was, in his words, “a revolution that confronts and eliminates obsolete thoughts and systems, that focuses the full power of science and free-enterprise democracy the systematic empowerment of every person to live his or her God-given potential.” Dart’s legacy can be felt today in the form of the ADA, the fight for universal healthcare and anywhere there is a call to action to advance people with disabilities.

“I cry out to you from the depths of my being. Humanity needs you! Lead! Lead! Lead the revolution of empowerment!” -Justin Dart

More excuses…Please don’t get fed up with me.  This past week was very stressful, with the school year winding down and the rowing season coming to a close there is a lot going on.  Then, on top if that, I was given the opportunity to interview for the full-time math instructor opening at the school that I am working at.  For the interview, I was asked to teach a stand-alone lesson, which is a lesson that does not need any previous knowledge and does not need anything going forward.  I decided to teach some probability and statistics, which led into a lesson about the birthday paradox, which after some calculations, you figure out that in a room of 23 people, there is a greater than 50% chance of someone having the same birthday as someone else.  If you have questions…I will help you out.  Regardless, the interview was a 3-step process, which I feel really good about.  I hope that I get the position.  Long story short, that is why I did not write my article last week.  I did not forget about you, though.

So…with the rowing season coming to a close, and it being a successful season, our top boat qualified for youth nationals in Oak Ridge, Tennessee.  It is a big deal, and probably the toughest high school race in America.  As the head of the program I was given the task of figuring out and finalizing all of the travel arrangements.  I called and rented the van, and got hotel reservations. Things were going smoothly until Memorial Day Monday.  We are going to Tennessee with a total of 8 people, 6 students and 2 coaches.  It is a 13-hour drive, and the coach and I were going to share driving duties.  I drive with hand controls, which attach to the foot pedals, and a spinner knob.  I called Enterprise to rent a 15-passenger van, so that we could all fit comfortably.  I then asked for the addition of hand controls, which the national operator who handles putting hand controls into the van, was VERY excited about.  This would be his first time putting hand controls in a 15-passenger van.  I finished the process and was excited; I got my confirmation and we were ready to go!  I put together the budget, gave it to my athletic director and we were ready to go!

Then, I got the call on Monday from another person from Enterprise letting me know that they could not put hand controls in the 15-passenger van.  They gave me no reason other than they cannot do it.  I tried pleading my case, but there was no one else working, as it was a holiday, and I was told I could deal with it the next day.  There is nothing written on the website on having a protocol of not being able to put hand controls in a 15-passenger van.  There is also nothing structurally different about the make and the location of the pedals in a 15-passenger van.  I think it is out of laziness.  I tried calling the next day, and there was no answer at the location.  That is where I stand now…I will keep you informed.  I called a couple of other rental car companies, and will get to the bottom of this, and get a van with hand controls.

Has something like this ever happened to you?

@scottysuss

Ed Roberts started the first CIL in Berkeley, CA in 1972. One of the primary functions of the CIL was to be a place where people with disabilities could take control of their lives instead of being diagnosed and told what they needed to do.  Peer support was one of the core services of that first CIL and remains a core service of other CILs across the country and the globe. By seeing a peer and not a “professional,” a person with a disability can have a positive role model and can begin to take more initiative and control in their lives. Peer counseling along with independent living skills training gives the individual the knowledge and skills to live as independently in their community as possible. The fact that these centers are run by people with disabilities makes the advice and input from the peer supporter more meaningful than that of a person without, who would only seek to “fix” the individual.

Aside from peer counseling and IL skills training CILs offer Information and Referrals for services in the community that will benefit the consumer.  These referrals can range widely from finding programs that offer case management and assistive technology to children to finding affordable housing to finding transportation.  These referrals are meant to help keep the consumer in touch with their community and allow them to make choices for themselves.  Part of being independent is making decisions for oneself and being allowed to face the consequences. The final core service offered at Centers for Independent Living is advocacy, both systemic and personal.  All CILs have staff that are passionate about enacting change and working with (not for) consumers so that they can have a voice and help make changes that will positively benefit themselves or their community.

CILs are unique environments because of the fact that primarily people with disabilities staff them.  A requirement of CILs, other than the four core services, is that 51% of the staff and the board of directors must be people with disabilities (this is a minimum percentage).  Often, the percentage of people with disabilities running these centers is far above 51%. People with significant disabilities are often sought to fill the primary operating positions of these centers. Consumer control makes CIL both unique and powerful among the disability community.

Resources:

1. Find a CIL in your area: http://www.ilru.org/html/publications/directory/index.html
2. World Institute on Disability: http://wid.org/about-wid
3. disAbility LINK webpage: http://www.disabilitylink.org/

Stroke can occur by either a blood clot (Ischemic stroke), or a torn artery (hemorrhage). Both types cause damage to the brain, and in effect, damage the function of the body. Since different parts of the brain have different functions, the stroke can affect speech, mobility, memory, sleep, and other vital functions.

Depending on age, health, race, and family medical history, some people are more prone to stroke than others. The good news is that most strokes are preventable by making changes to your diet, exercise, and lifestyle habits. 80% of strokes are preventable, so educating yourself, family, friends, and others is important in decreasing your risk of stroke.

Here are some facts you may not know about stroke, but could help save your life or the life of someone you know:

Worldwide:[1]

• 15 million each year have a stroke
• There will be 5.7 million stroke-related deaths
• Stroke is the 2^nd leading cause of death for people over the age of 60
• Stroke is the 5^th leading cause of death for people ages 15-59
• It is the leading cause of long-term disability in the world

In the United States:[2]

• Every 40 seconds someone in the U.S. has a stroke
• Every 4 minutes someone dies from stroke
• Women are more prone to stroke than men, by 55,000 annually
• African Americans are twice as likely to have a stroke than whites
• 100,000 women under the age of 65 have strokes each year
• Stroke is the 4^th leading cause of death of Hispanics

Call Emergency services immediately if you see any of the following,
and follow the F.A.S.T. acronym to help you remember the signs of stroke: [3]

F (Face): Does one side of their face droop?

A (Arms): If you ask the person to hold both their hands out in front of them with their eyes closed. Does one hand drift down?

S (Speech): Is their speech slow, slurred, or not making sense?

T (Time): Timing is everything! Get the person to the hospital as soon as possible

Stroke symptoms in WOMEN are different from that of men:[4]

• 73% of women DON’T know the signs of stroke
• Only 3 out of 10 women know they are at a higher risk than men of having stroke
• Women experience different stroke symptoms than men,including: [5]
  • Sudden shortness of breath
  • Sudden hiccups
  • Sudden nausea
  • Sudden headache with no known cause
  • Sudden general weakness
  • Sudden face or limb pain

Resources:

American Stroke Association: www.strokeassociation.org/STROKEORG

National Stroke Association: www.stroke.org

National Institute of Neurological Disorders and Stroke: stroke.nih.gov

[1] World stroke campaign. World Stroke Organization, 2011. Web. May 23 2011.

[2] “Understanding Risk.” Strokeassociation.org. American Stroke Association, n.d. Web. May 23, 2011.

[3] “Warning Signs of Stroke.” Stroke.org. National Stroke Association. 2011. Web. May 23 2011.

[4] “Women and Stroke.” Stroke.org. National Stroke Association, n.d. Web. May 23 2011.

[5] “Unique Symptoms in Women.” Stroke.org. National Stroke Association, May 2011. Web. May 23 2011.

@srlaugtug

So here I am listening to Claire De Lune drinking tea in my room at the fabulous Victoria Hotel at 8.26pm, just had an utterly divine dinner at Alice’s Thai Restaurant (something I have not been able to do in 2.5 years!) followed by a swim in the hotel pool surrounded by glass and glittering city lights.

The day started off ok considering the night before (I had some very upsetting news) so a dash to the hospital to see a friend before coming home to try and get some sleep. I got out of bed at 8am and had a quick breakfast and hopped in the shower before my sister Natalie and nephew Xanda came down at 8.30am to pick us up. I knew that with the arrival of Xanda all my best laid plans would go out the window. So here I was doing my hair, makeup, getting dressed and finishing packing with my shadow (aka Xanda) following me. He had retrieved 2 of his little blue chairs and put them in the bathroom with me carrying them all the way up the passage so we could play trains. I of course did not have the time to play with him (something he has never encountered before in his 2.5 years hehe). So he upped his game a little with the cuteness and went into my room and got my book off my bed and came into the bathroom and said “I will read you a story”. I had my head upside down drying my hair quickly and looked over to see what he was doing and he had dragged one of his little blue chairs into the bathroom with him again (my sister had since moved the chairs out of the bathroom) and he kept going to sit on it, ready to open my book to read to me, but I would remember something in my room and duck in to get that so I would turn around and there he was dragging the chair into my room as I dashed past him back into the bathroom only to then see him coming into the door with the chair again (and the book – no idea how he managed to carry/drag both). In the end the musical chairs occurred twice more until he proclaimed “I am going to sit on the floor and read you a story”. He is such a bright boy and already knows his letters and proceeded to go through all the names in the family which began with letters he found in the paragraphs. He then says “And Corkie says: hello. And Xandy says: hello. and Corkie says: I love you. And Xandy said: I love you too”. I was half frantic/half hysterical at this point trying to get ready and knowing I was running late, still half asleep but totally and absolutely and utterly in love with my nephew so when I heard him say that I burst out laughing (nearly poking my eye out with the mascara), turned around and swooped down to gather him up in a big hug and kiss. I finally yelled out “SOMEONE ANYONE” to come help me or entertain Xanda. I finally managed to get into the car and Xanda held my hand in the back seat all the way to the airport talking about it non-stop, about Jeremy the Jet Engine and everything he could see and think of (so cute!) but by this stage I was already a mini wreck. So we got out of the car at the drop off point with a very unhappy Xanda in the back as he could not come with us nor touch Jeremy the Jet Engine. I had to turn my back on him very quickly after goodbye as I simply cannot bear to part with him. I do ok if he goes to Queensland to see his other grandparents but I feel so GUILTY leaving him behind. I know you probably thought I would at least be in Melbourne by this point in reading but Xanda is such a huge part of my everyday life that there is not a moment that I don’t include him in.

We got to check in with the board flashing boarding! We freaked out, ran all the way to the gate (I normally have a wheelchair so that’s saying something) and finally got on the plane during the final boarding call! So close! In the air we went – I was managing ok but had started to sneeze from the air conditioner so I started snuffling away at the tea tree oil! It is worth its weight in gold a hundred times over (I did not get sick the entire holiday AND no viruses or illnesses since I have been back). We are up and down before we know it (only 45 min flight) and off the plane we hopped. As we landed I was “Ok wow we are here”. I hadn’t really caught up with myself. Went to claim our one suitcase (full of my meds hehe and extra storage for the CLOTHES we buy) and because I was really starting to fade we caught a cab to our hotel. Using the skybus shuttle from the airport to the city is about $16pp and is uncomfortable not to mention full of people and all their luggage – I just couldn’t do it. The cab was not so bad – it was $50 so $25 each which is definitely worth ones health.

We checked in to our hotel – http://www.victoriahotel.com.au/ and the room was perfectly appointed (if a bit of a walk around the rabbit warren corridors hehe – I was about to sit on the suitcase so mum could wheel me). As we got into my room, I flopped on the bed, had a cup of tea and was out cold for about an hour. Mum decided to get a head start on shopping whilst I rested. After waking up feeling much more like the living I put myself back together and met mum down the road. I cannot tell you how LIBERATING that felt! Just walking from the hotel room down the street on my own ? I felt confident and very very happy pretending I was just like everyone else. Mum and I proceeded to go to Bourke Street Mall where the standard retail stores in the city are and had a nice look around. It was very busy and hectic. I was not accustomed with people darting here and there and large grouping of girls and women with perfumes deodorants and hairsprays in a confined space so it wasn’t that pleasant but I stuck it out. As I do, I start stressing when I can’t find anything to buy, especially when I forgo things at home and save for a big shopping trip but we did the Mall and then decided to go to the DFO.

We walked a couple of blocks (yes I know! What CFS?) and caught the city circle tram to where the DFO…was. It had moved! This is where I started to struggle to adjust my thought patterns. I had my first test in the Mall with people and directions etc, but this landmark had moved and wasn’t what I thought it would be so the energy I budgeted had to be changed – for good or bad I was not sure yet. We stayed on the tram for a couple of more stops and the conductor told us to cross this certain bridge and it will take us to the DFO. We did that then had about 5 traffic lights to cross in a HUGE big intersections with LOTs of traffic and cars which make me edgy but we finally made it to the DFO and I settled in a bit more (but the extra 10 minutes walk had already depleted me and cut into my energy time limit). We looked at all the shops. I was determined on that, nothing worse to leave something half done and I purchased a couple of lovely things. My feet were positively singing at this point. We stopped half way round and debated on lunch – Subway which I can’t have, makes mum sick but has it anyway, or fried Chinese food or…sushi! Now I have had it once before in London but only a very small portion and…I HAVE FALLEN IN LOVE! The ultimate CFS FOOD! Raw, light, healthy and totally filling! So one chicken and teriyaki and prawn and avocado roll later (mum and I split it) and we finished the shops.

I was really dead on my feet by this point, had used up all budgeted energy and was starting on my reserves. We got off at our tram stop and started our walk back to our hotel but called into the minimarket on the way and grabbed a few things…my beloved rice milk, Thins chips and some chocolate! The chips are gluten free and the chocolate is 70% dark which my specialist said I can have as it scavenges the free radicals in my body. Hooray! So I can have a little bit each day (and you ladies out there might know why I was manically craving some….). Spending time in there with the lighting and people, even though it was needed, depleted more of my reserves. By this point I was slurring my words, was very pale and couldn’t keep a thought straight in my head let alone walk straight hehe but it was also finishing work time for the city workers so there were masses of people. Mum and I ducked up a lane way thinking it would short cut us – my fault. I am actually part compass, seriously, but it failed me today hehe. We were 2 blocks over from our hotel and 1 too many. By this point my legs were seriously making themselves known (I have spent the last 4 months in bed) and my feet, not to mention my nervous system, and well every cell in my body. Mum is great as usual encouraging me to keep going and we managed to get to our hotel (please note along the way I was not too far gone in some part of my mind to register some shops to go back to) and we got upstairs and into the room. Again I flopped on the bed with a cup of tea and had 10 minutes rest whilst mum went for a swim and then realized that I had to pay for the net in the room! I thought it was free! But I’m glad I bought my laptop so I can write this. I called dad at home and he googled where the gluten free places were so I could mark them on my map but realized the place I had in mind for dinner was further away than I thought. The idea of moving at all almost brought me to tears so I had another little rest and decided to go up to see mum, just stepped out of the room and she was coming up the hallway. I filled her in about dinner and she said “Look there is Thai restaurant downstairs, let’s try that no matter how much it cost”. We were going to take-away as I was so tired but when the lady asked us if we wanted a table I was automatically going to say no and almost physically stepped back but then I thought yes,. YES! I can do this. It was quiet, low lighting and nice music playing and I remembered THIS is what I came here for. To learn more lessons, learn more boundaries and try new things and have a normal as possible existence. As I sat there I felt my tension headache fade away and I didn’t even have to have codeine! Afterwards mum took me up to the pool for a swim to help my dear little legs and feet and then here I am. Another reason I am glad we ate in was because mum and I got the chance to reminisce about the last time we did that together – and that was when we traveled Europe! So we had a fabulous funny time talking over delicious food I know mum didn’t have to cook after a long day at work just for me and watch her enjoy herself too.

I did think later about my condition and the way it appears – as I always tend to do. I don’t look any different (apart from a bit pale) from anyone else and I thought when I have to get out of a place or I go to go first in a line instead of letting, say, an elderly lady person first and then I get glares because I didn’t let them go first – I want to tell them my body is in the same condition as theirs, I am sick you just can’t tell. So those things go through my mind, as does when I am in shops. I feel like all my personal space is gone. I suggested to mum maybe a neck brace or an arm sling would make people step away from me or move more cautiously around me so I wouldn’t get so anxious etc. It’s something to think about. Thursday though at the larger shopping centre I will have to have a wheel chair so maybe it will be a better experience then.

I also noted how much I love where I live in Launceston, Tasmania. I blew my nose when we got back to the hotel and black soot came out from the pollution here in the bigger city. And nothing I am on medication wise will cater to any of that. It was also thought provoking and I am going to research pollution and illnesses/disabilities when I get back.

Another outstanding thing is not once did I take any of my anxiety medications! I did at one point need a codeine but normally I need about 3 to get through the day from the people and smells and noises and lighting! It’s the worst lighting. I did notice towards the end of the day my Tourette Syndrome started playing up with eye tics. I just wanted to close them and I hate that more than anything so trying to control that makes my skull and brain tense but it’s not so bad now.

Well time to sign off and start a new day waking up in a new place – Wednesday. We learned today to walk slower, eat more, more breaks, stress less, and just enjoy tomorrow. I hope the mattress is comfy hehe.

Stay tuned! I will try and post pics if the darling Mr Bercume can help me otherwise I will share a link from my facebook account.

(P.S. I wrote this bloge after a very long day and now editing it after another very long day so forgive any typos or poor grammar but I know if I don’t get started on this it wont happen lol oxoxox)

So with all that it has to offer, why does New York City seem to be a relic when it comes to wheelchair accessibility?  While many other parts of the country and the world have transitioned into the 21st century, The Big Apple still seems stuck in the 1950s when it comes to accommodating people in wheelchairs.  I realize that the northeast region is the oldest part of the country and wants to maintain that sense of elite history and vintage sophistication, but I think there needs to be a major overhaul in the wheelchair accessibility of New York City’s transportation system.

The New York taxi is an iconic image and a visual trademark of The Big Apple.  Look down any street and you can see a blanket of bright yellow from one street corner to the other.  Step to the curb and all you have to do is wave your hand in the air and within seconds a taxi is at your “beck and call” ready to whisk you away to your destination.  To the average person it seems as though there is an overabundance of cabs in New York City.  Well, this may be true for all able-bodied passengers, but those of us in need of wheelchair accessible cabs, have a much more difficult time.

Living just two hours north of The Big Apple in Massachusetts, I frequently venture into the city for a weekend with friends and family.   I consider myself extremely fortunate to be able to live a mere ‘stone’s throw away’ from one of the greatest cities on planet earth.  I look forward to going to shows, taking in the fabulous nightlife or simply having a picnic in Central Park; however, my excitement begins to dwindle when I have to plan my transportation for the weekend.  The key word in the last sentence is “plan”.  It is completely unfair that those of us in wheelchairs have to reserve a taxi more than twenty four hours in advance in order to insure a ride from one destination to another.  In essence, those of us in wheelchairs are not able to able to enjoy the same spontaneity of a normal vacation or getaway.  In advance of my trip, I have the tedious task of calling cab companies to see if they, A.) have wheelchair accessible cabs and B.) are readily curbside available like the average taxi.  While I am always able to find cab companies that do offer wheelchair accessible service, it is virtually impossible to find a cab that does not require at least 24 hours advance notice.

It has come to the point where I completely neglect the idea of using transportation instead choosing to navigate the streets in my wheelchair.  Don’t get me wrong, I love being outside in New York but this option proves more challenging when my intended destination is 50 blocks away or when mother nature decides to dump buckets of rain or snow midway through my journey.

Case in point, I was in New York a month ago to celebrate my birthday with my cousin, who lives on the upper west side, and a bunch of my friends. We had a fun night planned consisting of dining at a posh Belgian restaurant and hitting up a few bars, you know, the typical social life of a 20 something year old girl.   Reserving a cab did not even enter my mind because I did not want to be under the unnecessary time restraints of leaving at a certain time.  I wanted to be able to enjoy my night without the tic-tock of the clock glaring down upon me.  Naturally, the night of our celebration, Mother Nature decided to rear her ugly head and produce every type of weather pattern known to man.  It seriously felt like the movie, The Day After Tomorrow, with the apocalypse upon New York City.  I was expecting a monstrous wall of water to come barreling down Lexington Avenue.  Ok, maybe I am exaggerating a tiny bit, but, nonetheless, it was a very stormy night.  Rain was pouring down in buckets, the wind was gusting at top speed and the temperature dropped to an unseasonable 35 degrees.  There were also random bursts of thunder and lightning and a brief hail squall.  Being the jolly optimists that we are, we did not want bad weather to ruin our joyous evening so we journeyed out into the stormy night.  We all thought, “How bad can it be, it’s just a little rain”.  Oh how wrong we were!  The restaurant and bars were only seven blocks from our hotel and we thought our one measly umbrella would be able to shield us from the harsh elements.  Our journey was just that, a JOURNEY.  We navigated puddles the size of Lake Michigan, dodged blowing trash that was being swirled around by the wind and winced in discomfort as ice cold horizontal rain pelted us in the face and blurred our vision.  The streets of New York were eerily silent because the majority of people were dry and warm in their TAXI’S!  Only a few other brave pedestrians joined us on the otherwise uninhabited streets.

As you can probably guess, by the time we arrived at the restaurant I was one soggy mess from head to toe.   My wet hair was plastered to the side of my face, mascara had formed its own little river down each of my cheeks and my jeans were so drenched they were literally suctioned to my thighs. Since I am sitting, my thighs took the brunt of the soaking.  My feet had taken on a purple hue from the frigid rain that had accumulated in my four inch heels.  The restaurant staff was extremely accommodating and gave me towels from the kitchen to dry myself off.  I think they felt sorry for me since I literally looked like I had taken a shower and forgot to take my clothes off. Again, our optimism and sense of humor outweighed our frustration and we enjoyed the rest of our night.  Even though I dined with restaurant kitchen towels draped over my body and went to the bars with frizzy wet hair, we managed to laugh our way through every obstacle and create a truly memorable night.

With the availability of an easily accessible cab, none of this craziness would have occurred.  I have visited many other cities in the U.S. that are far more advanced in wheelchair accessible transportation, Los Angeles, San Diego, Miami and Las Vegas just to name a few.  These cities are miles ahead of New York and allow for a stress free vacation or getaway.  Unlike New York, these cities provide a multitude of wheelchair accessible cabs that do NOT require 24 hour advance notice and can be called just minutes before leaving for your intended destination.  I know that there are many others out there who have had similar experiences with wheelchair cabs and echo my sentiment. Please comment below and share your transportation nightmare.  Let’s spread the word and force NYC to initiate major improvements in their wheelchair accessible transportation.

@mgazda

I don’t buy into that train of thought. If I left the past behind me and forgot about it, then how would I know where to go next, or what to do? Who we are today is dependent upon our past. All of our actions, thoughts, jobs, experiences, and memories have shaped us. It would be a shame to let all that go to waste, right? I think so.

On occasion, I think about my past. I think about when I was younger and where I wanted to be and who I wanted to become. I must have changed a lot over the years, because I am nowhere near the point I thought I would be right now.

When I was a child, having a learning disability was frustrating and uncomfortable, and I felt stupid. I didn’t even know I had a learning disability until I got to college. Little did I know that my disabilities would become a big part of who I am and determine how I act or think and what I do. I never thought my disabilities would end up helping others, or that I would help others with disabilities.

I started out college as an art major, but after some time, I thought it was too impractical. Then I got practical, went into the sciences, studied, and worked in the field for several years. I got my degree in molecular biology—I know…what was I thinking? But, it was interesting to me at the time, and still is today. Then after working in several science jobs, I decided that my true calling was researching, writing, and teaching others. I eventually settled on becoming a career counselor for people with disabilities. Now that I am a counselor, writer, and mentor, I sometimes forget that my science background is still there. Occasionally, it will sneak up on me while I am watching nature shows or out hiking. I don’t realize that it’s still a part of who I am. I can’t forget that, because it was one step in my journey to where I am today, here at ILWAD.

My point is this: our past makes us who we are today. All the good and bad things that we do or that happen to us—all of it is important. I have been asked if I have any regrets, and that question always boggles my mind because if I had regret and wished that my life were different, then I might be a different person altogether. Well, I like who I am, so I am thankful for all the things in my past. There were a lot of barriers and hardships, but there were also good things and good relationships, and overall I am happy with how my life is. I thank myself for making the decisions that I did, because I am here with you all, right now.

How has your past shaped you to becoming who you are today? What experiences have made you a valuable member of ILWAD? I would love to hear your thoughts. Here’s to our future!

@srlaugtug

The Independent Living Movement has roots in many other social and civil rights movements, but has grown to take on a meaning all its own. It is a movement of empowerment and unity.

The Independent Living movement is all about people with disabilities taking control of their lives and being responsible for their actions. The medical and institutional models that had been (and continue to be) the predominant mindset that keeps people with disabilities confined to institutions without the same rights and freedoms as people without disabilities. Eventually, frustrations with physical and social confinement led to a desire to move away from the attitude that a person with a disability was “broken” and needed to be repaired. The realization set in that society and the poisonous attitudes that it can breed were what needed to be repaired.

The push to move away from the medical model led to an embrace of the self-help ideology. Instead of being diagnosed and hospitalized, the value of interacting with a peer, someone who has shared a common experience, was seen. This peer support mentality is still something that is highly valued in this movement and by its supporters.

People with disabilities should have control over the goods and services rather than being given a select number of options. Centers for Independent Living are consumer driven, something that people with disabilities want to see more of. The consumer should have the right to express what is best for them and what will work best in their particular situation.

Centers for Independent Living (CILs) have the Independent Living Philosophy at the core of everything they do. CILs are a product of the IL movement and are here to help consumers connect with that movement and their communities.

Get involved with the IL Movement by becoming active with your local Center for Independent Living (CIL) or other advocacy-centered organization.

For more information about disABILITY LINK (the CIL that serves the Metro Atlanta Area) call 404-687-8890, visit us on the web at www.disABILITYLINK.org, find us on Facebook (www.facebook.com/disABILITYLINK) or e-mail info@disABILITYLINK.org

Our team is awesome!

Let me give you an idea of some of the things we have accomplished over the last two months. In March, I joined the team as Chief Editor and disability writer and we welcomed new ILWAD contributing writer, James.

We also want to thank our ILWAD Army core team members, Maureen who is our Editor and Senior Journalist, Courtney-our Social Media Director, Jym, our Political expert, and Tamika who takes care of community outreach and is a contributor. In April, Sarah, Scott, Maureen, Jym, and James published 11 articles all being inspirational, informative, or political.

Meet the growing team here: http://ilivewithadisability.com/ilwad-team/

If you have not been to the site in a while, make sure to stop in and check out our hard work on the ILWAD Disability New organization:

http://ilivewithadisability.com/disability-current-news/

Also, Ron has been hard at work improving the site for usability, bringing back some old features and putting in place some new goodies for our members and their account profiles:

Some note worthy items:

- New “lite” community chat is back! A more scaled back version favoring functionality over a robust system.

- A new Achievements system is being tested, members are now awarded points for site activity and accomplishments. In the near future, you will be able to cash-in your ILWAD points for partner giveaways and ILWAD swag.

- We have gone through some major software updates for the site, you will notice many changes in the way the site functions and how you interact with your personal profiles and community at large.

- The new ILWAD Buddy Program has been announced, with more details to come. This program is designed to develop relationships that benefit both you and the person that you are paired with to contribute different experiences and skills in coping with a disability along with building a lasting friendship. Support, empowerment, positive values and positive identities are the hallmarks of the ILWAD Buddy Program. Through your dedication as a volunteer buddy, you can make an impact in a member’s life and our community as a whole!

- Scotty is presenting this weekend to a Disabled Youth Soccer Team, and Maureen will be going on the morning news next month to feature our community ( more details to come).

We want to expand our social network, so please tell everyone you know to join, friends, family members, and people with disabilities or supporters without disabilities. This is your community, and we look forward to getting to know you better while providing you with relative disability news.

This is the first of my ILWAD monthly Editor updates, expect the coming weeks and thank you so much for being part of our family!

Sarah Laugtug
ILWAD Executive Editor
@srlaugtug

The easy decisions are where you know what’s right, and you know what’s wrong; the easiest decisions aren’t necessarily “right,” but at least it is the right decision for you.

I ran into the “better” decision-making process leading up to my last race. I had four rowers all set to go out and win our biggest race of the season. The week before, I started having doubts about one of my rowers and the heart and muscle that he was putting into each practice. He was my fastest rower, and also my heaviest, but he lacked the heart and motivation that is needed to compete in crew. A crew race is a long sustained sprint (around 6 minutes, depending on your level and distance) that is pretty much the hardest thing ever, if you let your body get to that point. There are some racers at a high level, who go so hard that they actually black out. This rower could not give me everything, and the night before the race, with lots of support from fellow coaches AND the rowers in that boat, we decided to make a switch. I put someone in the boat who had never been in the boat, but who wanted a shot so badly. I knew he would give the team and me everything that he had.

The hardest part about this tough decision was that, the night before the race, I had to tell the swapped kid I was taking him out of the boat. He was very upset, but wished the four rowers well. He ended up racing in another boat. He now understands that every time he has a chance at a boat, he has to pull and row as well and as hard as possible. The best part of the decision was telling the new rower that he would be in the boat; he was SO excited! He also was extremely nervous and did not want to let the team down. He had a very hard time sleeping the night before.

I wish the story and my decision had a happy ending. While the decision was the “better” decision, it was not “better” enough. We needed to come in the top six to make the final, and we came in 7^th by less than 2 seconds. There were positives, like going the fastest we have ever gone, and building a team. I was and continue to be extremely proud of the rowers and the team that I have built. In my short coaching career, this was the hardest decision that I have made, and while it was the “better” decision, it was still tough.

I want to know about your tough decisions, it does not have to have a “better” happy ending, but knowing that you did the right thing for yourself, is the only thing you can do.

@scottysuss

Today, as I drove down the coast, I thought about when I lived in Humboldt County in Northern California, where I did my undergraduate work in Molecular Biology. I was lucky enough to live near both the ocean and the trees, and I loved it! In my rigorous science program, I needed an escape, and I made sure to dedicate a part of my schedule (even if it was just a small part) to spend time in nature. Whether it was sitting in a park or hiking through the forest, or dipping my feet into the ocean, I made sure to take some ‘me’ time.

Being a member of the Audubon Society, I sometimes went on bird watching excursions, binoculars and all. How l loved learning the different calls and colorations of the local fauna. I went on a backpacking trip with some classmates, had bonfires with friends on the beach, and took a few class trips to study plants.

I felt so alive, hiking and breathing the fresh air—not at all like the smog in the Bay Area. Life was calmer too; drivers were courteous, people on the street were friendly and helpful; there was always some street fair or event going on in the town square. Life was slow, deliberate, and meaningful. If I haven’t emphasized it enough, Humboldt is a wonderful vacation retreat.

Driving through nature this afternoon was a reminder of my nature-filled past. I realized that when I lived there, I took time out to take care of myself physically and spiritually. School was extremely difficult, but spending time outdoors relaxed me, so I felt balanced. Sometimes now, I feel off balance. I have chores and work, and things to do and people to Tweet, and I forget that I love nature and need to throw myself into it occasionally.

I want to remind you (and myself) not to forget what we need in order to take care of ourselves. Figure out something you love doing. What is something that brings you peace, or makes you forget about time? Find out what that is and do that. The time is now.

Tell me, ILWADians, what are some of the things you do for yourself that bring you happiness and fulfillment?

The Social Security Administration (SSA), along with the State Disability Determination office establishes eligibility for Social Security Disability Insurance (SSDI) by reviewing past employment history, medical records, and disability criteria. The SSA’s definition of ‘Disability’ as it pertains to attaining SSDI benefits requires that an individual is not able do the job tasks of their previous job, that they cannot adjust to another type of job based on their condition or disability, and that the disability is expected to exceed at least one year or result in death.

Below, is a summary of the five-step process in which the SSA determines eligibility for disability benefits:

1. Earnings: If you have not worked in 2011 or if your earnings were less than $1,000/ month you may be eligible and you move on to step two.
2. Severity of disability: Is your disability severe? Well what does that mean, you might ask? The condition or disability must interfere with your work.
3. Acceptable conditions: The condition must be found in a list located on the SSA website and must demonstrate that it is so severe that you are determined to be disabled and meet the following:
   1. The condition must last for a continuous 12 months or longer, or is permanent
   2. The condition must be listed on the SSA website; some categories include Mental Disorders, Musculoskeletal disorders, Skin disorders, impairments affecting many body systems, etc.
4. Previous job duties: Are you able to do the job duties of your previous job? The SSA will look at your previous job duties, your length of training required for the position, and will determine if you are able to do job tasks based on a comparison to similar work done in the nation.
5. Ability to work: Are you able to do other types of work? SSA will determine if you are able to perform other job duties or are able to adjust into another field based on your age, education, past work history, and skills.

I hope that helps clarify some of the mystery behind applying for SSDI benefits. I would love to hear your experiences in your process for applying for SSDI.

Please refer to the following resources for information on Social Security Disability Insurance

1. Determining your benefit payment: http://www.ssa.gov/planners/benefitcalculators.htm
2. Social Security Disability benefits information page: http://www.ssa.gov/pgm/disability.htm
3. Disability Starter kit; everything you need to know before applying: http://www.ssa.gov/disability/disability_starter_kits.htm

I had some ideas of things to write about for this blog post, but on May 1st, I was part of history. I was one of the 45,713 fans at the Philadelphia Phillies game, the largest gathering of Americans in America at the time of the news that the United States Navy Seals had found and killed Osama Bin Laden.  The USA chants started in MY section, after a gentleman turned to inform his friends, and it emanated throughout the sold out stadium.  Until the entire stadium was chanting “U-S-A! U-S-A! U-S-A!”  It was one of the most unbelievable experiences that I have ever been a part of.  It was no longer the joy of being at a professional baseball game, against our biggest rival, it was about something so much bigger; bigger than me, bigger than the Phillies, bigger than baseball. It did not matter anymore who you were rooting for on the field, because everyone was rooting for the same thing.

I was so inspired and so excited to be a part of something so life changing.  “The best night of my life,” I heard people saying.  I do not think I even realized the magnitude of what was happening and what had happened until riding home and talking to friends and hearing them tell me about how the Phillies game was a main focus, not only on ESPN, but other major networks like FOX, CNN and ABC.  Talking to my students, friends and colleagues today, they all wanted to know what it was like to be a part of an event. It was not only a baseball game, but also where people were just proud and happy to be people.

I understand that everyone who reads this is not American, and am not pushing any politics or patriotism towards you, but it was truly amazing to be a part of something the people will be talking about for years.  I will remember exactly where I was when I found out about Osama Bin Laden being killed, the same way I remember where I was when the Phillies won the World Series, and when I learned of the news of 9/11.  And more personal, where I was when I found out my grandmother had died, or when my friend found out he had cancer.  These are moments in my life that I will tell my children and their children about.

I want to hear about those moments in your life.  Please share…

@ScottySuss

I suppose the reason I have been feeling older is that I am noticing a few changes in my body. My hair has a few more strands of gray, I have a couple more wrinkles than in my previous decade, and I have more freckles. Shame on me for not wearing sunscreen—having a Norwegian background. There’s still time to change that, right? I can always start slathering it on now. SPF 70!

My age has me thinking about my past: what I was like five years ago, ten years ago and so on. I feel so old now, but how will I feel in ten years from now, I wonder? I hear people say that things always get worse as you age. Is that true? If so, how depressing.

Five years ago, I began taking care of my health, power-walking on lunch breaks, cutting back on sugar, trying to eat more healthily, drinking the aspired “eight glasses of water” per day. Life was good and getting better for my health. I even lost a little weight.

One year later, I had a stroke. I didn’t realize it at the time, but I would spend the next few years getting back into shape. It was shocking that when I left the hospital I had gained about eight pounds. In my first two months, I gained 20 pounds! All my hard work destroyed. It made sense, though, since I was lying in bed all day except for bathroom and meal breaks. I couldn’t even walk for the first couple of weeks. My newly sculpted muscles were turning to mush.

After the stroke, my new job was learning how to walk again without without falling over (which happened too many times to count). The term, exercise, had a new definition: balancing, taking showers without assistance, holding a fork, and driving.

My stroke was a few days after my birthday four years ago. I think about my life and my choices; I have many things in my life that are better. I am a lot stronger physically and emotionally than I was four years ago. I can walk without assistance and think clearly. I can drive. I can do just about everything on my own again. I have also learned so many things about myself since then, about what I can handle, what my strengths are, and what my deficits are. I now live life with a sense of gratitude and a greater appreciation for family. All these things that may have never come if it weren’t for the stroke. Being four years older doesn’t hurt either.

Everyone should tell their Congressional members exactly what is at stake. The health of people with I/DD may very well be at risk if it becomes more difficult or costly to access needed health services. What will happen if you or your family member loses services under Medicaid or if you have to pay for long term services and supports? And the idea that Medicare may be dismantled and go to private pay Insurance, well we all know the results of that. We are saddled now with the lack of cooperation in Congress because they will not support a bidding method which could and would reduce such costs for all.

Everyone with any interest at all must let their members know what the biggest concerns are for individuals and families with I/DD if state Medicaid programs are turned into block grants. With less money, would states make it more difficult to become eligible for Medicaid?

• Would they cut benefits?
• Would they cut current levels of spending?
• Would they decide not to cover currently eligible populations?
• Would the states stop serving certain groups of people?
• Would they stop providing entire categories of services?
• Would people with I/DD be able to obtain health care?
• Would people with I/DD have long term services in community settings or would they be forced into institutions?

As a minority, we must make our voices heard. We all understand that sacrifices will need to be made to address our nation’s deficit problems. We all need to help Congress understand that solving these problems is going to take a common sense and balanced approach. We cannot solve our problems by only focusing on the poor, the elderly, and people with disabilities, and allowing the continuation of the breaks for the wealthy.

So if you are concerned, get on the wagon and let them hear your voices.

There is a teacher out of the country in Korea visiting his sick father-in-law, and I have been asked to come in and teach all of his classes. For those of you math people, I am teaching Geometry honors, Algebra 2, Algebra 2 honors and Precalculus. I have been preparing, but I made time for my favorite people in the world…YOU!

In my previous blog-posts, I have not talked much about how I live with a disability and that is mainly because I am writing about my everyday life, and while my Cerebral Palsy affects my everyday life, it is not something that I always think about and focus on.

This came up in my life this week, while I am in the process of looking for a new job, because at this point (hopefully it changes soon) there are no open jobs where I am now, even though they really want to keep me. I was on the phone with a headhunter and on the application, it asked me about something “technical” I have experience in, and I mentioned ILiveWithADisability.com (ILWAD). The lady who was interviewing me, told me that she looked at the website and was so inspired and absolutely loved it. She then asked, why it was not on my resume. She then went on to explain how the website showed my willingness and ability to create a community that is focused on the individual (…brilliant!). That is exactly what I have been saying to all the schools that I have been applying to, but didn’t realize that I had already been there and doing that! I had no answer for her, other than, “I don’t know where to put it.” I found a place! My resume now has ILiveWithADisability.com (ILWAD) on it. I am so proud of what has been done here and am so excited to continue and grow, and continue to see the conversations that you are having with each other. You really inspire me…

I want to know about a time when you haven’t been sure about a reaction you would get about something, but then you got support and did it, and how amazing it felt!

@ScottySuss

Having experience with depression, some of the tools I have used to help myself were attending support groups, keeping appointments with health professionals, participating in therapy, learning about my disability, teaching others about it, keeping active in the mental health field, writing in a journal, keeping a ‘happy’ list, and using the tools and worksheets I received in group depression classes. Below are some of those tools.

Happy List:

One of the things I do to help me with depression is to write and keep a “happy list.” What that is, is making a list of all the things that make you happy–big or small. For me, that is being in nature, or staying under a blanket when it’s raining outside, or playing with my friend’s children, watching “The Office” (because it’s so hilarious and I laugh so hard) or eating tapioca pudding. I find this is an easy way to snap myself out of the mood, even if for a short time.

Opposite Action:

I think one of the most horrible things about depression is that it makes you not want to do anything; however, taking the opposite action is what gets you out of depression. So if you feel like being in bed, then go out for a walk, take a bath, or read a book or something, anything. Read your happy list and do something off it!

10 Minute Rule:

I have to give credit to my mom, who taught me about the “10-minute rule.” The 10-minute rule is doing something, anything, for 10 minutes. Usually, that’s enough time to get you past the ‘hump’ of the transition between inactivity and activity. If after 10 minutes, you don’t or can’t do more, that’s fine. At least you can say you were productive for 10 minutes!

Analyze:

What has been going on in your life, has there been any stress at work or at home that you think could be affecting you? Have there been any major events in your life: new school, job, family, did you break up with a spouse, lose medical benefits? Maybe there is a good reason you feel the way you do.

Learn about your symptoms of Depression:

This may sound odd, but whenever I feel depressed, I go on the internet and research information on depression. What that does for me is it makes me feel like I’m not the only one with depression. In addition, I can learn new tools to help me overcome my depression. Some of the common websites I use are below

Resources:

1. National Alliance for Mental Illness: www.nami.org; here you can look for support in your area of residence. They offer classes, support groups, libraries & resources, and volunteer opportunities. Last year I participated in the annual NAMI Walk to raise funds and be with other mental health supporters. It was a blast!

2. Depression and Bipolar Support Alliance:  www.dbsalliance.org

3. DBSA has a unique tool to keep track of your moods, medications, journals: https://tracker.facingus.org

4. Suicide Prevention Lifeline: www.suicidepreventionlifeline.org & 1-800-273-TALK (8255)

5. Substance Abuse & Mental Health Services Administration: www.samhsa.gov

6. National Institutes of Mental Health: www.nimh.nih.gov

*Disclaimer: The above are resources only. This article is not designed to replace medical care. If you have an emergency and need immediate assistance, call your health care provider or 9-1-1. Always consult your doctor before trying any new therapies.

I sometimes wonder, as Ron does, what it means to be a disability rights advocate. The first thing that comes to my mind when I think of an advocate is someone who talks to local government representatives, stands on a podium to make speeches to the community, and is an in-your-face type of personality. Using that definition, I would say I’m not an advocate.

So that got me thinking, well, what am I? I promote people with disabilities in my own community, I have been an inspirational speaker for disability events, I took part in the first annual disability awareness parade in my city, I am a writer of disability topics, and I work with people with disabilities in assisting them in becoming independent and employed.

I did a little research on advocacy, and I learned some things I would like to share with you. I’m guessing that all of you are advocates, but you just don’t realize it. I’m here to tell you that if you support and promote the independence of persons with disabilities and are vocal about it in one way or another, then guess what? You’re an advocate! Below are some of the different forms of advocacy, where do you fit in?

I would love to hear your thoughts on what kind of advocate you are!

Advocacy Types:

1. Self-advocate: you represent yourself as a person with a disability, whether it is in health care, independent living, employment, housing, etc.
2. Individual advocate: represents and assists a person with a disability in ensuring they receive equal rights and the care they require
3. Group advocate: represents a group of people with disabilities
4. Systemic advocate: involved in social change including helping to change policies, legislature, and promoting public awareness surrounding the topic of disability rights. You may also be involved with lobbying politicians, campaigning, and taking part of publicity events

Avenues to Display Advocacy:

Media

1. Writing letters to the editor
2. Meet with media: local reporters, radio personnel, TV. stations
3. Share disability information with elected officials; therefore bring to their attention the needs of the community

Legislative

1. Write letters, emails
2. Make calls and visits to representatives
3. Testify in committees

Administrative

1. Meet with advocates and staff regarding policy change
2. Participate in forums of decision making
3. Provide information about community services and needs to appropriate entities

Other activities

1. Signing petitions, writing emails to officials
2. Making donations to or volunteering with disability organizations
3. Planning or taking part of disability events in your community
4. Spread the word about the rights for PWD in talking to people, in social media, or other forms of communication (writing, art, blogging, etc.)
5. Participate in a disability advocacy group (see links below)

Links of Interest:

American Association for People with Disabilities: www.aapd.com

Civil Rights, Disability.gov: https://www.disability.gov/civil_rights

Disability Rights International: http://www.disabilityrightsintl.org/

National Council on Disability: http://www.ncd.gov/

I had a “roller coaster” weekend, as I would like to call it–a weekend with its highs and lows.  I was planning on having two crew regattas, one on Saturday and one on Sunday.  The one on Saturday was at our home course; the first race was at 8:00am, so I was at the course at 6:45am.  Our last race a final for the varsity boys, was scheduled for 5:49pm. It was a LOOOOONG day!  It ended up being terrible weather, with lots of wind and rain, and they shortened the length of the race to 1000m as opposed to 1500m.  They ended up starting boats in front of one another so that the boats were even crashing into each other and they were not stopping the race.  Enough venting, but it was the worst organized and run regatta I have ever been a part of.  To top that off, the final race was canceled at 5:15pm, when we could have left the course at 3:30pm.  THEN, the race the next day was canceled because of high wind and water.

However, everything was better that night when I came back to school and went to the annual talent show.  I was blown away!  I was so inspired to see the amount of talent the school that I work at had.  It was amazing!  There were students and teachers who sang, danced, did comedy and other fun acts.  I sat there for the three hours of the talent show, which ran an hour late, and enjoyed EVERY second of it.  The amount of work and talent that these students put into activities that are not “schoolwork” is amazing!  I was so proud of each and every one of them.

On that note, I think we should have a digital ILWAD talent show…please send your special talents to scott@ilivewithadisability.com.  I want to put them on ILWAD TV!  Let’s inspire people together around the world!

“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.” Winston Churchill

Shauna Bruce-Hamburger is the perfect representation of this powerful quote. An optimist from a very young age, Shauna has always maintained a “glass half full” type attitude despite dealing with more than her share of struggle and challenge. Born with Spina bifida, Shauna vowed from an early age that she would never let her “so called” disability get in the way of living her life to the fullest. In fact, Shauna is grateful for the many challenges she has conquered insisting that each hardship has strengthened her soul and made her who she is today. She is a firm believer that even though we all have difficult circumstances we cannot change, our lives do not have to be defined or controlled by these struggles; we all have the power to control our attitude.

It was only fitting that Shauna transform her optimistic and enthusiastic attitude into an inspiring career as a motivational speaker and new author. Her infectious energy draws in large crowds to her speaking program, Divine Potential. In this speaking program, Shauna helps people realize their full potential while also teaching techniques on how to deal with the daily stressors we all face. Her first book Beyond Adversity into Freedom is a moving memoir jam packed with positive insight and wisdom on how to overcome a challenging situation and move forward into a life of positivity and happiness.

I was extremely fortunate to be able to chat with this inspirational woman. To visit Shauna’s website, go to: www.divinepotential.com. Her book, Beyond Adversity into Freedom, can be found on her website, and a multitude of other venues including Amazon.com, Barnes and Noble, and Borders.

An excerpt of the original interview can be read below,

M: So many people with disabilities deal with daily frustrations, how do you deal with frustrating aspects of life and what is your advice to those who are frustrated with their disability?

S: I absolutely do understand the daily frustrations of a disability-because not only do we have the normal stresses of life-but we also have all of the stressors that go along w/ a daily disability. It was that understanding that led me to create my stress management seminar. I do have my times of frustration that is for sure-but what I always try to remember in those times of stress and frustration-is that I always have a choice in how I am going to deal with that stress. I remind myself that although my daily life can be very stressful with the issues of Spina bifida-things could always be so much worse. That is also something I teach in my seminars. So when I am stressed or frustrated-I try to remember that there are so many people out there with much worse situations than what I am going through-and that attitude of gratitude helps me get a better perspective.

M: With all the negativity in the world today, we definitely need more positive people like you. How can people become more positive in their daily lives?

S: For me-my positive attitude came from what my parents taught me early on, that no matter what I go through in life-I always have a choice in how I am going to respond too and deal with my circumstances…Realizing we always have the power to choose our response, attitude and perception in our circumstances actually empowers us-and can help us rise to a new level of thinking and living in the midst of hardship or adversity.

M: What do you think is the most common misconception about people with disabilities?

S: I think the most common misconception, is that a disability-means unable or less capable. That is just not true! We all have gifts and talents and we all have things that we were created to do-that only we can do the way we can do them-and that goes for everybody on this earth. We all have intrinsic value and abilities and a purpose for our lives, and we are all perfectly capable of living the life we were created to live.

Note: Above were a few excerpts from Maureen’s interview; the interview in its entirety will be posted to ilivewithadisability.com in the near future.

JAN’s Mission:

In an effort to assist in the employment retention of persons with disabilities, the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) offers a no-cost service, JAN, to provide disability employment information to employers, the public, and people with disabilities.

SOAR: http://askjan.org/soar/index.htm

One excellent tool is the Accommodation Search, or SOAR (Searchable Online Accommodation Resource). This tool is useful for both employees and employers. Users can view different disability types to find low or no cost accommodation ideas. Here, they can also learn about general disability information; and unique to other disability sites, resources are listed by skill set. For instance, under the “cognitive disability” heading, are accommodation ideas for deficits in math, writing, reading, memory, and time management.

For Employers: http://askjan.org/empl/index.htm

Employers are often looking for advice on how to approach people with disabilities in assisting them on the job. This subheading includes resources for federal and private employers including consulting services, searchable online tools, publications, and trainings.

For Individuals: http://askjan.org/indiv/index.htm

For people with acquired or new disabilities, one of the hardest things to do is to figure out what you need to be successful on the job. Even for those who have had a life-long disability, JAN comes to the rescue!

• Here, you can find accommodation ideas listed by deficit or by disability type
• There are also resources and articles on how to ask for an accommodation, the definition of ‘reasonable’ accommodation, and ADA compliance
• If you are looking for a job, JAN provides resources on disability friendly employers, finding the right job, and entrepreneurship

ADA Library: http://askjan.org/links/adalinks.htm

The ADA library offers resources on changes made to the law, information on each of the different titles of the ADA, and answers to commonly asked questions.

A-Z Disabilities: http://askjan.org/links/atoz.htm

Two sections are included under this heading, Accommodations by disability type, and by disability topic.

Accommodation by Disability Type includes specific information, resources, and accommodation ideas for various types of disabilities, including:

• Body odor
• Cancer
• Cognitive/ neurological
• Vision impairments
• Chronic Fatigue Syndrome
• Learning disabilities
• Mental health disabilities
• Post-Traumatic Stress Disorder
• HIV/AIDS
• Latex allergies
• Spina Bifida

Accommodation Information by Topic may be especially helpful for employers and organizations and includes accommodation-related information, such as:

• Transition-age & Youth
• Assistive Technology
• Disclosure
• Harassment
• Costs/ benefits/ return to work
• Disability Etiquette

Publications: http://askjan.org/media/index.htm

Publications and Resources include documents in Word, PDF, or HTML on disability accommodations and information regarding:

• Industry/ Job type (such as food service, nursing, retail, science jobs, etc.)
• Products (different accommodations for specific disabilities, i.e. computer software)
• Fact sheets
• Consultants Corner
• Case studies
• ADA laws
• Entrepreneurship topics

Federal, State, Local resources: http://askjan.org/pubsandres/res.htm

Under this heading is an expansive list of many different resources including:

• The Access Board
• Local information, 2-1-1
• Centers for Independent Living (CIL)/ Independent Living Centers (ILC)
• Client Assistant Programs
• Office of Fair Housing/ Equal opportunities, and more

Webcasts and Trainings: http://askjan.org/training/index.htm

JAN offers free web trainings annually, which can be accessed by signing up on their website. Past trainings can be accessed through the archived series. Each seminar includes a Power Point presentation with written and audio captions, handouts, and resources. I highly recommend the webcast series, as they are informative and useful from the perspective of both an employment specialist and a person with a disability.

I encourage you to explore this invaluable resource as I think it will be a great benefit to you in school, employment and in daily living.

I’m back!! I am very happy to be back today. I write these articles while I am working in study hall in the cafeteria with the students who are not doing so well in school. I get the privilege of making sure that they are working hard and that they are not on facebook. I help them with math and sometimes just chat with them about life. It is a good place, most of the time to get things done. The reason I did not write last week, was because I was sick and went to sleep before 9:00pm. It was great to get some sleep, but was horrible to be sick! I have no patience for being sick, and it is the only time that I openly complain. And you guys thought I was so strong.

I also dealt with a lot of drama over the last two weeks with the girls’ crew team. 2 girls left the team and one coach now has less duties. I say “addition by subtraction.” The morale and attitude on the team has increased and people are much happier! It was a lot to deal with, but we are back and moving forward.

I learned a lot about myself over the last two weeks, and most of it was good! I learned that I was a leader, a person who could lead other peers and young people, a leader who is able to lead in the face adversity, a person who can stand up to other adults. I learned I could be the person who brings people together and the person who can communicate with people, students, bosses and parents, as a leader of something that is bigger than just me. I learned that I can be the person to lead an organzation and a team to some place better. I gained a massive amount of confidence in the last two weeks. I am proud of myself.

Think of a time when you can say that about yourself, I want to hear about it.

As a disability rights advocate and as a PWD, it shocks me that after all the progress we have made in our rights to be treated as equals, that we are still seen as incapable by some, even in organizations that assist in promoting independence for people with disabilities. I am appalled, but unfortunately, not surprised.

I am angered to hear about disability counselors who do not offer their clients tools and support in becoming independent, or worse yet, even discouraging their clients. The counselor’s job is to encourage clients in becoming independent and self-sufficient and to not judge clients, or assume responsibility for making decisions for their clients.

Since my family member and I both have had professional experience as counselors of PWD, we also noticed that we have a similar approach to counseling: promoting self-sufficiency. We both demand a lot from our clients because we see potential and know they can achieve their goals. In addition, we have received criticism for having so-called ‘unrealistic expectations’ of our clients. However, I would argue that the opposite is true. As a counselor providing services, I want my clients to succeed in life by pushing them beyond their comfort zone. I feel it is my responsibility to support clients in learning additional skills and to encourage them to have new experiences.

As a client receiving services, I wanted my counselors to encourage me and tell me I could succeed—I needed that. I wanted them to offer me tools in helping me achieve my aspirations. Unfortunately, I did have a few counselors and instructors who didn’t believe I could accomplish my ambitions, and as a result of that, I felt bad about who I was and saw my disabilities as a hindrance. I’m not alone in receiving this type of treatment and regrettably, it discourages some of us in becoming independent and actually represses us, whether or not the counselor realizes it. It was important for me to find people and services that supported me in my goals. It took some time, but I can feel proud for standing up for myself and getting the assistance I needed.

In conclusion, I want to encourage each of you in finding organizations that support who you are and support your goals in life. You don’t have to settle for less than adequate service. If you find a counselor or teacher who doesn’t or cannot help you, find another one—don’t worry about their feelings. It’s up to you to ensure you are receiving the services you require. After all, you are the advocate for your life and this is your journey to independence.

Before starting the actual fights, the school put on several demonstrations. There were guys and girls showing their styles and techniques, and some of them were my age. I especially liked the weapons demonstrations with Nunchakus, swords, throwing-stars, and the like.

After the demos, some of the karate teachers, known as Senseis, and their students went through the crowd passing out fliers inviting people to join their schools. I recognized the teacher from the school near my house and waved at him. He came over and I told him how cool the demos were, and that I would love to learn how to do Karate. He told me it took a total commitment to work through the process; but if I’d give him that commitment (and $30 bucks a month), he would help me succeed.

Well, I came from a large family and my folks didn’t have $30 bucks a month to spend on Karate. So, I got a paper route and mowed lawns in order to pay for it myself. Nothing was going to stop me from doing this.

On the first day of class, the Sensei explained how the training worked. There were five levels or phases of the training, and whenever you completed a phase, you were awarded a different color belt to show your achievements. Each phase took an average of 90 days to complete and was broken down into 30-day segments. In the first month, we were going to exercise –a lot! We had to build endurance, and strength. And, we had to teach our muscles new habits, new ways to move. Then during the second month, we would learn punching, kicking, and blocking techniques and start putting them together into routines (or katas in Japanese). In the 3rd month, we’d just practice-practice-practice until we could perform those katas in our sleep. The rest of the phases would work exactly the same way. All told, it would take a little over a year to reach Black Belt (expert) status.

It wasn’t easy. There were all kinds of distractions. Getting up at five am every morning to deliver papers in all kinds of weather made me want to quit more than a few times. Mowing lawns and shoveling snow was no fun either. On top of it all, I had to keep my grades up or I’d be forced to quit. But, through it all, I want you to know that I showed up at that dojo nearly every day over that year no matter what it took. I worked my butt off. I earned my Black Belt, became a paid instructor, and was a “featured” tournament fighter and demonstrator. I wanted it more than anything else in the world, and with commitment, hard work and excellent instruction, I achieved my goal.

Things aren’t that different today. I have things I’m trying to do; goals I’d like to achieve. There’s still no easy way to make them happen. In fact, with my age, unemployment, and disabilities, it’s gotten harder. I’ve proven to myself and to others, over and over again throughout my life, that when I dedicate myself to a purpose, I always make very good progress towards it. When I choose not to give up, whatever the challenges, or however long it takes, I achieve my goals.

I’ll bet you have goals too. You also have disabilities; in many cases, there is really nothing you can do about them. Disabilities don’t make you any less a person with dreams and desires. They might be small, they might be huge, but you have a right to pursue them just like anybody else. If you pick a goal and dedicate yourself to it, and believe with your whole being, you WILL make good progress towards it. If you choose to NEVER give up no matter what it takes or how long it takes, you will achieve it. You CAN do it!

~James Medley @matrix

Sarah Laugtug, Editor

I am very excited to be here as the new disability news editor at ILWAD, my goal is to educate and offer you resources to help you become more independent, empowered, and educated on disability topics. The following is a brief introduction to the most prominent disability laws passed in recent years. Disability rights, just as any equality cause, require time and dedication in order for change to occur. I believe we are on the path to equality, educating the public, and becoming more independent and united as a group. Each section includes a link so you can research further if you choose. I hope that this article is useful to you, and always feel free to give me feedback. And remember, we are BEAUTIFUL, not BROKEN.

Architectural Barriers Act (ABA) of 1968:

Requires that public buildings and facilities be accessible to persons with disabilities including buildings of employment and residence.

The Rehabilitation Act of 1973:

Expands federal services to prevent discrimination toward PWD in the areas of health, education, and welfare. The following sections of the Rehabilitation Act are listed below.

• Section 501: Federal agencies of the executive branch of government
• Section 503: Federal contractors making more than $10k
• Section 504: Federally funded programs including public schools, post-secondary schools, state, and local education agencies.
• Section 508: Federally funded organizations to provide PWD accessible technology services and to eliminate barriers to those services.

To read entire act: http://www.eeoc.gov/eeoc/history/35th/thelaw/rehab_act-1973.html

Rehabilitation, comprehensive services, developmental disabilities amendments Act: 1978

This Federal act amends and improves the Rehabilitation Act of 1973 extending and creating community service and employment programs for persons with disabilities (PWD). Title VII ensures “comprehensive services for independent living,” thus, authorizing rehabilitation services to provide PWD services to promote self-sufficiency in becoming independent in employment and in daily activities. Such services provided include therapeutic counseling, housing assistance, job placement services, transportation, attendant care, reception of prosthetics, and recreational services.

To read entire act: http://www.eeoc.gov/eeoc/history/35th/thelaw/rehab_amendments_1978.html

Americans with Disabilities Act (ADA) of 1990

The Americans with Disabilities Act (ADA) has come a long way since President George Bush signed the act on July 26, 1990. The purpose of the act was to implement guidelines to prevent discrimination for persons with disabilities in the areas of employment, public services, accommodations, and telecommunications. This was a landmark event establishing recognized equality for people with disabilities. The ADA includes several titles, simplified below.

• Title I: Prohibits discrimination in employment concerning persons with disabilities, implemented on July 26, 1992. Areas include altering workstations, modifying equipment. Employers may not discriminate in any employment process (hiring, wages, benefits, etc.)
• Title II: Prohibits discrimination in public services including public transportation, state and federal entities
• Title III: Prohibits discrimination in public accommodations including construction of buildings: restaurants, hotels, stores, transportation systems
• Title IV: Prohibits discrimination in telecommunications

President George Bush concluded with, “…I now lift my pen to sign this Americans with Disabilities Act and say: Let the shameful wall of exclusion finally come tumbling down,” a new era began for the inclusion of persons with disabilities. Transcript of the signing of the act: http://www.eeoc.gov/eeoc/history/35th/videos/ada_signing_text.html

Americans with Disabilities Act Amendments Act (ADAAA), 9/25/2008:

On September 25, 2008, George W. Bush signed the Amendments Act (ADAAA) with an effective date of January 1, 2009. This ADAAA differs from the ADA in providing a broader definition of ‘impairment,’ protecting a greater number of individuals.

New definitions of disability include (in regards to individuals):

• Being regarded as having an impairment
  • A person is protected if they received discrimination based on a perceived or actual impairment
  • An example of a perceived impairment is when an employer assumes the individual has a disability and discriminates that individual based on the perception (whether or not the individual has a disability is irrelevant)
• Having a record of having an impairment
• A physical/ mental impairment that limits major life activities
  • Major life activities include, but do not exclude: seeing, hearing, eating, sleeping, walking, standing, learning, concentrating, speaking, breathing, loss of control of bodily functions

Examples of the expansion of inclusion of impairment must limit one or more major life activities:

• The impairment may be episodic or in remission (such as with Cancers):
  • It will be considered an impairment ONLY when it limits a major life activity when active
• The impairment may be controlled with medication, medical supplies, prostheses, hearing aids, assistive technology, oxygen therapy, low-vision equipment, etc.
  • i.e. Clinical Depression when controlled by medication is covered by ADAAA even though no symptoms arise because without the mitigating measure (medication) the Depression would affect major life activities

For more information: http://www.ada.gov/pubs/adastatute08.htm

Dept. Of Justice (DOJ) amended regulations to implement the Americans with Disabilities Amendments Acts (ADAAA), titles II and III: ruling effective 3/15/2011

All new construction projects must be ADA compliant beginning March 15, 2012. Structures built/ altered with 1991 standards are exempt until the next alteration. Adjustments to the following include:

Title II regarding Public entities:

• Detention/ correctional facilities
• Rental housing programs

Title III regarding Public accommodations: changes made to rules regarding

• Service animals
• Wheelchairs
• Effective communication

For more information: http://www.adata.org/Static/TitlesIIandIIAmends.aspx

Regulations to Implement the Americans with Disabilities Amendments Act (ADAAA). Ruled by the Equal Employment Opportunity Commission: 3/25/2011

Effective on January 1, 2009, the Americans with Disabilities Act Amendments Act (ADAAA) included major changes to the ADA expanding and simplifying the definition of ‘impairment.’ Congress required the EEOC amend its ADA regulations to reflect the requirements of the ADAAA. You can view the official ruling here: http://www.federalregister.gov/articles/2011/03/25/2011-6056/regulations-to-implement-the-equal-employment-provisions-of-the-americans-with-disabilities-act-as#p-3

Ron Bercume (@Ronbercume) and I were invited to speak at Temple University a couple of months ago, and our presentation is now online! Please check it out, I hope you are inspired. Some of the information is a little “techy” but I think we got the mission and idea of the website across to the 50+ people that we presented to.

Now time for some excuses about why I have not been around. Do any of them mean anything? Nope! However, I justified myself to not be connected because I was “busy.” I am still very busy, maybe busier than ever, but like I said, I’m baaaack!!

I work at a private school in Princeton, NJ. I work in the resident life office with the students who live on campus, teach math and coach the rowing program. If it sounds like a lot, it is! This past week, I taught math for a teacher whose wife had a baby. I got to teach precalculus and calculus. I did a lot of studying, but it went great! I love teaching, it is so gratifying when the student gets it.

Also over the last couple of weeks, crew (rowing) started! I LOVE coaching; I coach the novice boys’, the athletes who are trying the sport for the first time. It takes a lot of patience, but it is great. This year, I am in charge of the rowing program and all 4 teams logistically (Boys Novice and Varsity and Girls Novice and Varsity). There are over 70 athletes on all of the combined teams. For spring break, I took 60 of the rowers to Augusta, Georgia for spring training. We had a great time and only had one incident. (Another story for another day).

The students/rowers are my inspiration. They keep me going and having an awesome time at this job. I love their eagerness and determination. This morning while at breakfast one of my rower’s mothers came up to me to tell me about how much her twin sons love me. She actually used the word “adore.” She said they talk about how much fun crew is and on of them calls me “the beast.” At first, I was kind of offended, but then she said it was because of how I get around and can do everything regardless of any limitation. For now on…call me the beast!

@Scottsuss

Approximately 1 out of every 6 Americans lives with a disability. And millions more have a family member or friend who lives with a disability. Thanks to a bipartisan spirit, with these EEOC regulations, millions of people will be able to successfully put their American work ethic to use helping our businesses, our governments and our schools out-innovate, out-educate and out-build the global competition to win the future.

Today, those American values are once again on display and we as a minority must continue the plight to assure we move forward, never back including reminding our Congress ( writing letters, phone their office and or contact in person if in you area and your able) to withhold the ADA celebrated for 20 yrs last July….let’s be participants and not but spectators

Lazy Legs Dancing!

You’ve done nothing wrong. So smile. And keep on with your life. There is absolutely no need to turn around, raise your voice to defend yourself because you may feel insulted.

Just smile because you know better than to make fun of anybody under any circumstance.

His first run, he was quite nervous and he closed his eyes. The bell rang for the race to start and Oscar began to run with his eyes closed. He accidentally crossed a line during the run and was disqualified. Oscar was hurt but he learned to run better and better at each race. Soon he was getting attention from press and getting sponsors from all over the world. Now everyone one knows him and loves him!

Here is a video of him:

Well I’m here to tell you that 2010 is the year to shine.

Schools all over America are now accepting children with disabilities and learning disabilities just like any other ”normal” student. Hopefully someday with just this tiny change, people will just start accepting each other like their own young children in elementary schools and junior highs have. Let us all live together in peace.

Here is one link I found.

http://saintmaryshome.blogspot.com/2010/05/flowers-dancing-and-king-and-queen-for.html

It’s happening in Virginia, New Jersey, and over in the west coast too. I am hopeful that more disabled students will have a fantastic time in school this year and beyond.

To be honest the political atmosphere is so severely tainted I am not sure if any filtering can be done… we have gone way to the cliff’s edge, with campaigns consuming most if not all of our politicians time and Representing we the people put on the back burner. IS of my opinion we must work hard for Campaign reform now with our input insistence a priority to try and cool the atmosphere, as it is I personally can buy a campaign ad, be true or falsehoods , pay it , have it run for however long and I do not have to disclose who paid for it and thus no responsibilities lie with me … ( unreal )

Party affiliation means nothing to me, an open honest independent that feels his way through all the information and chooses my own candidate whom I think might do the best job, thus no party dictates my vote, voice and or work I do directly and independently.

But sadly the simple days are gone the upcoming new vicious atmosphere has but given me no choice but be vicious myself in advocating for the minority of the nation the disabled.

We cannot continue to back burner those in need in exchange for allowing the wealthy to benefit all and they not holding up their end of the bargain in wanting the tax credit given them for 10 yrs, which was done and upon it’s expiration extended for 2 (two) years and ours extended to a few drops in a bucket 20 feet deep. Equality for all.

So with strong reservations about where this Congress goes, does and if cooperation, compromise or bi partisanship prevails has yet to be seen…

I strongly support my President as I do any until they prove me cause to speak out against some action they may chose that I personally find a distaste in .

EXAMPLE: President George W. Bush, whom took us to war, ending diplomacy, inspections and going forward when the facts were there tho with no attention given to and Bin Laden was to all knowledge not in Iraq but Afghanistan and responsible for the twin towers attack.. we missed the target on that one big time…….and he had to have known it ..but then in question who was the President Bush or Cheney? lingers in my mind..

It sadly appears not with the first thing on the agenda to repeal the Healthcare reform which I have read over and over with great approval and enthusiasm….. One including myself had to realize this is the first Legislation regarding healthcare to be considered, passed in so many years I do not recall now when the last was even given consideration…Decades to be sure…

Thus I but pray we the people read the bill over good and in length to see first hand the benefits and the great job it does and will do, no not all is effective tomorrow but it does have merits beyond what is presumed, as the first media/political mongers were so degrading it and with no explanation other than excuses.

So enjoy the venturous New year in style, lets all get kindly vicious in our work to secure the civility in the Congress, your state, county and or local government to be active, a participant in the process not just a spectator thinking someone else will do all the heavy lifting.

Thanks, I had to enlighten this Community on where and why I have been absent in a period with the task a hand and the process of outlining my top priorities in a agenda for the year.

Jym (@jymm)

( part two coming soon to a community near you soon )

It’s just friends and information we all seek or share be just a moment or two. For this we are blessed to have this place where time means nothing at all.

There is chat , lol, & TY to you all, my friends, who I know not at all. But we do know

“Good friends are hard to find, harder to leave, and impossible to forget.”

With this thought, I wish you a very Merry Christmas,

[No Happy Holiday Crapola]

in this Joyous Season

All the Luck of the New Year with Happiness, Prosperity, Good health and all good things to you and yours

In this what we have come to know as Cyberspace

Make it “Happen” , Jym

Extenders Bill: (including Medicare Physician Payments, Low-Income Premium Assistance, and Therapy Caps Extensions). The House and Senate passed an extenders bill that will, once again, delay for one year significant Medicare payment cuts to physicians. A 25% cut was scheduled to take effect on Jan. 1.

The cuts are the result of a 1990s law that tried to keep Medicare spending in line through automatic reductions. However, Congress has repeatedly stepped in to delay the cuts while avoiding a permanent fix.

The bill also includes an NCOA-supported one-year extension of the Qualified Individual (QI) Medicare Savings Program, which was set to expire on Dec. 31. The QI program is critical to many seniors and younger adults with Medicare whose incomes are between 120-135% of the federal poverty level. It pays for Medicare Part B premiums that cover physician and other outpatient services.

Medicare therapy caps also were extended for a year.

FY11 Appropriations:
Although the House passed a $1.1 trillion continuing resolution (CR) to fund the government through Sept. 30, it is unclear what steps the Senate will take to finalize FY11 funding.

The House bill, which passed 212-206, essentially freezes 2011 discretionary appropriations at the current level, providing $45.9 billion less than President Obama had requested for the year.

The Senate Democratic leadership is hoping to replace the House measure with omnibus legislation that includes all 12 annual spending bills, but at reduced levels. Not all Democrats support the omnibus, and Senate Republicans are pushing for a short-term CR instead.

Tax/Stimulus Legislation:
President Obama negotiated a compromise with Republican leaders that, for the next two years, would:

Extend all of the Bush-era tax cuts, even for those with high incomes.
Provide a generous tax exemption for wealthy estates.
Maintain lowered rates on capital gains and dividends.
Prevent the alternative minimum tax from hitting up to 21 million more households.
The bill also would keep jobless benefits flowing to the long-term unemployed for an additional 13 months and grant a one-year payroll tax ”holiday” for nearly all workers, hoping to provide economic stimulus.

The cost of the package is estimated at about $860 billion. The proposal is not paid for and would increase the federal deficit by that amount.

The Senate is expected to vote on the package first, while the House is considering changes that NCOA supports to modify the estate tax provisions.

President Obama has signaled that he is interested in engaging in a broader tax reform debate next year.

$250 Payments to Seniors:
The House and Senate rejected bills that would have given Social Security recipients a one-time $250 payment to make up for a second consecutive year without a cost-of-living increase. President Obama and Democrats had supported the effort, but Republicans blocked the measure, saying the$14 billion price tag was too high.

So in Conclusion

The nation ”cannot afford” the $14 billion relief for those on social security who haven’t seen a cost of living increase in two years, but we can afford the $855 billion tax cuts for the richest of the rich. Where is the conscience of our country?

we do it again in 2 yrs… I think NOT………………….

Acting like a modern-day version of Ebenezer Scrooge, as the wealthiest two percent of Americans are poised to receive a tax cut windfall, both chambers of Congress voted down a bill to provide seniors [and people with disabilities] a lump sum payment of $250 to compensate for the another year without a COLA..

Where does the greed end? Go figure I guess not !

I hope you take the time out to stop and give yourself a compliment, every single day.

But after a while you’d miss the faces of your loved ones and eventually you’d want to see their beautiful face once again.

Share what happened to you, we are here to listen.

The vicious cycle of short-term delays that increase the size of the cut and the cost of reform for American taxpayers must come to an end. These cuts are a problem for you and your family because these drastic cuts in Medicare payments will make it harder for patients to see their doctor.

Tell your senators what you think of their playing legislative games with your health care. Use the toll-free hotline at (888) 434-6200.

Consider some of these alarming survey results:

• 60% of all doctors say a Medicare cut will force them to decrease or stop seeing new Medicare patients and to discontinue nursing home visits.

? A majority of doctors in rural communities say they will no longer be able to conduct important outreach services due to nine years of projected cuts.

• Nearly 3 out of 4 doctors say the Medicare cuts will force them to delay purchasing critical new medical equipment.
• 65% of doctors say the Medicare cuts will force them to delay purchase of new health care technology.
• Many doctors also reported that more Medicare patients are now being treated in emergency rooms for conditions that could have been treated in a physician’s office, that it’s gotten harder to refer patients to certain medical and surgical specialists, and that many seniors now have to travel further for needed medical care.

In all of time, there has been no one who laughs like me, no one who cries like me.

I’m the only in all of creation who has my set of abilities. Oh there will always be somebody who is better than one of the things I’m good at, but no one in the universe can reach the quality of my combination of talents, ideas, abilities and feelings. Like a room full of musical instruments, some may excel alone, but none can match the symphony sound when all are played together. I am a symphony.

Though all eternity, no one will ever look, talk, walk, think or do like me. I’m rare. And in all rarity there is great value…

Because of my great value, I need not imitate others, I will accept even celebrate my differences…

I’m beginning to realize it’s no accident that I am special. I’m beginning to see that I came into this life for a very special purpose.
There must be a job for me that no one else can do as well as I. Out of all the billions of applicants, only one is qualified, only one has the right combination of what it takes.

That one is me, that one is me, because I am special” (author Unknown)

And I bet you’re as SPECIAL as I am…if not read this over again, come alive and be SPECIAL too.

Jym

For the past thirteen years I have lived life in a wheelchair or “the seated life” as I and many others like to call it. While I have adapted and created a happy life for myself, I suffered a tremendous loss the moment I dove into that pool and I grieve that loss every day. Naturally, I have been actively following the advances in spinal cord injury research from the very beginning. My confidence that I will indeed walk again has never wavered and I have always remained steadfast in that hope. However, seeing this story was a defining moment in my life because it signifies the future cure that I and so many others have so desperately longed for.

I am so happy to share this ground-breaking news with my fellow spinal cord injury survivors and all those who have followed the advances in stem cell research.

Check out the story in the link below! http://www.cbsnews.com/8301-504763_162-20019265-10391704.html