One of my medical school guest professors, let’s call him Dr. X, came to class in a wheelchair. He had not used it all of his life. In fact, he had only begun to use it in the past couple of years.
Dr. X was a normally functioning medical student with a wife and two children when one day he woke up, got out of bed, and fell on the floor. His right side was completely paralyzed. He was taken to the hospital in an ambulance; tests were done; and he was diagnosed with Multiple Sclerosis.
Eventually the right-sided paralysis moved to his lower body, and with intensive physical therapy he was able to walk using two forearm canes, the kind where the whole forearm is supported by a rest and the hand grips a handle. He finished medical school and did a residency in Rehabilitation and Physical Medicine, in which he was an expert due to his own experiences. His disability proved to be an asset, even, because newly injured patients could not cry out accusingly, “You don’t know what it’s like!” because he obviously DID know “what it’s like” to struggle with his disability every day of his life.
When he came to visit us, in our second year of medical studies, he spoke at length about the difference between a disability and a handicap. A disability, he said, is a physical or mental difference in the way our bodies or minds work, when compared to what he called the “temporarily able-bodied,” which means everybody else, because everyone, at some point in their lives (for the most part) will lose some kind of physical or mental function.
Then what is the difference between disability and handicap, other than the former being a more politically correct term than the latter, for describing a person who is “differently abled”? The difference, he said, id that a disability is a condition where the body/mind is altered from the accepted standard, while a handicap prevents the person from functioning in society. It is, he said, mostly a self-defined condition.
He went on to say that everyone who finds her/himself either suddenly or gradually differently abled must struggle with the question, “I know the things I can no longer do; but what are the things that I CAN do? In fact, what does my disability make me an expert in? How can I use it to my advantage? Or, what are the things I am already an expert in that I can still do?”
Obviously this does not apply to someone who is God forbid in a coma, or psychotic, or immobilized by depression. But it immediately brings Steven Hawking to my mind, and Christopher Reeves, Virginia Woolf, Sylvia Plath, and even Edgar Allen Poe. Hawking never mentioned his disability, but instead focused on science, with occasional wanderings into philosophy. Reeves, once he regained enough strength to become an activist, poured his energy into promoting research for spinal injuries. Woolf and Plath used the creativity that often accompanies mental illness to write exquisite prose and poetry, before their illness got the best of them. All of these people eventually died as a direct result of their disabilities, but during their lifetimes they made contributions to science and culture that will last forever.
I am often thinking about this, now that I have received a seven page disposition from a federal Social Security judge, declaring me totally and permanently disabled beginning on the date April 4, 2000, which is the date that I had my devastating breakdown. For a few weeks after receiving the letter, I despaired of ever being of use to society again. I contemplated suicide night and day, as I felt that I would only be a burden on society and my family, even though I rarely see any of them because of my reclusive habits, which are due to my illness.
After a while I began thinking that my lack of employment could be used as an opportunity to write the memoir that has been hanging around the edges of my mind for decades. My life really has been stranger than fiction, so why not write it? This has led to taking mini-courses on various aspects of writing and publishing.
And due to the encouragement of my friend Ruth Jacobs, author and anti-prostitution activist, I have begun writing on the topic of sexual exploitation. I was exploited as a youth, and until now this was a source of shame and distress. Ruth has shown me that I can use my own experience to reach out and help others who may be in the same position to see themselves as survivors rather than victims, and to help each other heal through our solidarity.
I am working on the art of being disabled, not handicapped.
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Glad I can see this now, when it came up the other day I was dying to read it from the title but it wouldn’t open!
This is a fabulous post and mirrors virtually every thought I had when as with your professor I was struck down with MS…sometimes those thoughts of uselessness do come to mind but I challenge them as much as I can. I use my disabilities, both mental and physical, as an advantage in my position as a support worker…they really can be turned into a positive when you set your mind right.
One addendum I would just need to make…Out of the group of famous disabled achievers…Steven Hawking isn’t dead 😉
Thank you, both for the support and the information that Dr. Hawking is still among the living! My apologies to him.
It’s wonderful that you’re able to put your disabilities to work for others. No better way to help than by example and role-modeling. I wish you many good years of good health and good function and good work!
That’s OK. He’s amazed all his doctors and survived longer with his condition than most! Since I got told that nearly 10years ago at university I’m betting they’re even more amazed now he seems to be enjoying bit part acting so much 😉
As you know it can be difficult sometimes but all we can do is try! Thank you 🙂 things may be bad at the moment but I will get through it!
Her admin made a slight scheduling blunder. But she’s so glad that you and everyone else have found it to be so resonant, now it’s up properly. 😉
heh, I was reading and thinking, crap, Stephen Hawking is dead? Can’t believe I missed that piece of news. Glad to hear he’s still alive 😉
What a wonderful post! When I had to stop working due to my chronic health and pain conditions It was indeed a hard step to take, but a necessary one. However, I knew that I had to see what positive effects it had on my life because to only see it as a negative would be to give in to the disability. The biggest asset was that I was able to be home for and with my children while they were young and through their school years. My oldest child, who is now 23, is Autistic, Mentally Challenged and has ADHD. He is a wonderful young man who touches many lives with his spirit and enthusiasm, but has of course has many challenges. It was clearly much better for him to come home to me after school each day rather than go to some day care center, or even to another person’s home. Stability and routine are so important for folks with Autism and ADHD as Luke shows us time and time again. And my youngest, who is now 14, was just a baby at the time I had to stop working. He has never had to go to daycare or to a sitters on a daily basis and it was a true joy for me to spend every day with him as he grew and reached his milestones. I am by no means bashing people who must make use of child care services due to working…I did for my first two children until my middle child, a daughter who is now 19, was three plus years old. I just have to say that I did prefer being home with my kids before they entered school, as much as I loved my work as a children’s and family psychotherapist.
Speaking of which, I went to through a time when I was differently-abled in another way…major depression. Sever major depression. I wouldn’t want to go through this again by any means, but I wouldn’t change the fact that I did if I had the chance. Not only did it help me grow as a person, but it gave me a deeper understanding when working with my clients as a therapist.
Gratitude…I think that is the key, however we are abled! Peace to your heart,
Sara
Sara, what a wonderful picture of putting your “Differently-Abled-ness” to work! I am sure that being there for your Differently-Abled son has made, and will make the difference in his life that will make his different abilities into assets. Well done!
It’s so wonderful that you turned your disability into an opportunity to help your son, who will benefit from that his whole life. Sometimes the Universe works in interesting ways. As my grandmother of blessed memory used to say, “One door closes and another one opens.” Many blessings to you. 🙂
Thank you so, so, so much, on behalf of the entire Canvas community!
I understand the difference between Disabled and Handicapped. I am trying to prove to the SSDI that I am disabled, while trying to figure out the things I can still do, Thanks for the post.
I have been where you are in regards to SSDI. I resource that I used is an evaluation form your doctor and you fill out that addresses the levels of functioning (physical) that SSDI looks at in making their decision. This is geared especially for fibromyalgia, but could be adapted for other disabilities. If your disability is physical you might take a look at it here:
http://www.fmscommunity.org/ssaform.htm
Best wishes to you…and Peace to your heart, Sara
Unfortunately, my problems are cognitive and difficult to assess, apparently as far as SSDI figures anyway.
Thanks for the link, though, I’ll check it out.
Good luck with your case and I hope you find something that is truly satisfying to do.
🙂 Thanks. Best wishes for you in 2013 and beyond.
Writing is certainly something you CAN do. Those last paragraphs read like a manifesto of your determination. Powerful.
All the best with your art!
Thank you, Lunch (I don’t know your “real” name). I really appreciate the encouragement. I am currently 272 pages into my book and scratching my head about what I’m going to edit out to get it down to the obligatory 300 pages that all the agents/editors/publishers seem to be demanding these days. Sigh.
Yeah, I think that we -all that have been declared permanently disabled and unable to hold a job, have been there.
I -too, have struggled with the need to be still productive somehow. I have toyed with the idea of writing the story of my life. I don’t know if I ever will. Most of all, I struggle with the believe that I will die without contributing to the world in any positive way.
That is a really hard one that I also struggle with: what will I leave as my legacy? I think your idea of writing a memoir is a really good one. I’m in the process of writing mine. The process alone is worthwhile. It’s somewhat disheartening not to have the ending, “And then she overcame all of her obstacles and became a tenured member of the faculty at Harvard,” when my life has been more like, “and then she got fired from ANOTHER job for insubordination.” Until I got declared permanently unemployable, that is. My psychologist said, “what’s wrong with just saying, ‘And she lived the rest of her life in peaceful retirement’?” OK, I guess we get what we get, and the trick is to frame it right.
Right? RIGHT?
That’s exactly how I feel. But I suppose your psychologist has a point 🙂
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Hey Laura, I think that one was spam that slipped through the filter. Good with your answer (knock ’em down, I’m proud), but I went and flagged it and sent it to the bin. Yay Askimet, lately I’ve been having to un-spam a bunch of legitimate comments, now they let a crap one through. Sigh.
Good work! I thought that one was borderline, since it had specific content that could possibly relate to the post, and was about to spam it myself but thought, hm, what if it was real? I trust your eye for spam implicitly. Thanks for taking care of it! xoxoxo
I’ve seen that exact comment before multiple times, but you were very smart to be safe. . . The first couple of times I actually sent emails about what would happen if content was “borrowed”, and trust me when I tell you they were not as professional as yours and decidedly not for public consumption! 😉
But it was a good thing, because you did get me thinking about the fact that maybe, as this is a multi-author blog, I ought to make sure everyone knows how to handle requests and inquiries like that when they do occur, and if they aren’t comfortable doing so, that they can refer to me — and also the value of Google alerts (I’ll be happy to let you know how to set those up for your own blogs if you haven’t, though all Canvas content I theoretically have covered).
So educational, one way or another. 🙂
xoxoxoxoxoxo