Whether or not you believe I was a human being at the time, it was at the instant of my conception that it was determined that I would have a neuromuscular disease known as Spinal Muscular Atrophy Type II (SMA Type II). While some handicapped people can speculate “What would I have been like if I had not contracted polio?” or others might ask “What if I’d not been in an accident and had not severed my spine?” Because my disease is genetic, you cannot ask “What would Chris Young have been like without SMA?” To remove my disease is to change who I am.
This simple central fact that I’m handicapped has shaped my life for every second that I have lived and it will continue to shape me forever. For more information about SMA check out this blog post.
Q & A about Spinal Muscular Atrophy – Celebrating SMA Awareness Month
The “H” Word!
Before we go much farther I’d like to explain why I use the word “handicapped” when phrases like “person with disability” and other such junk is more politically correct. Let’s define a few terms as I see them. At one time these were the politically correct terms but I don’t cling to them for that reason. I use them because they make good sense.
Disease: A disease is a medical condition. Doctors diagnose them. They treat some of them. They cure some of them. Some heal on their own. Some never go away. SMA, Muscular Dystrophy, polio, Multiple Sclrosis and AIDS are examples of diseases. Some other medical conditions are technically not diseases such as spinal cord injury or cerebral palsy but for purposes of our discussions we can lump them together. A disease or medical condition can handicap you. As mentioned before, I have a disease called Spinal Muscular Atrophy Type 2. It is a genetic nueromuscular disease similar to Muscular Dystrophy.
Disability: A disability is exactly what it says: you are dis-able or unable to do particular things. I am unable to walk, dress myself, go to the bathroom without help, feed myself, pick my own nose etc. You have disabilities too. You can’t bench press 1,000 pounds. You can’t run a mile in 60 seconds. You can’t fly without mechanical aides. Having a disability isn’t anything extraordinary. Some people foolishly sit in wheelchairs or sightless or deaf and declare they aren’t disabled. Who do they think they’re kidding? By my definition they are. It doesn’t make them worthless, helpless, hopeless or special — it means they’re human.
Handicap: When your disability prevents you from doing something that A) you need to do; B) you desire to do; C) society expects of you… then you are handicapped by the interaction between your disability and your environment. While lifting huge weights or running fast miles or flying unassisted might be fun and/or profitable, in general you don’t need to. You probably don’t desperately want to. Nobody around you expects you to. Therefore these disabilities do not handicap you.
Now let’s use these terms. You don’t overcome a disease. You cure it or it goes away or you live with it or die from it. Unless the disease or medical condition or its after-effects go away, you don’t overcome a disability. But if you build a ramp, ride a wheelchair, widen a door, change an attitude, love your ability, use your ability or buy a hang glider — you can overcome, work around and even eliminate your handicap.
It bothers me that so many government programs and agencies and laws now serve “people with disabilities” because short of medical cures they are never going to win those battles. Also for some people having a disability isn’t a handicap so they don’t need any special help. However because our laws have been rewritten to serve people with disabilities instead of people with handicaps, they are now eligible for assistance whether they really need it or not. In the ’70s and ’80s programs served “the handicapped”. Those are the people who need help and can be helped.
By the way I’m not one of those people who think the world owes them something because they are handicapped or disabled or whatever. On the contrary I think we all owe the world something of ourselves and as a handicapped person I owe the world more of my talent because it takes more resources to keep me going.
I live with my disability and I work to eliminate or minimize my handicaps. On this page and related links, I hope to share with you some of the unique insights on life I’ve discovered because I am handicaped. Also on this website be sure to check out my personal blog “CY’s Eye on Life” which often deals with my handicap and disability.
Below are links to two autobiographical articles that I have had published. I hope to add more unpublished essays and reflections in the near future.
Read and enjoy!
“A Race Fan’s First 500”
This is a longer version of an article I wrote for Indianapolis Monthly which details my experiences as a race fan at his first Indy 500 and how my struggles with my handicap are as challenging as a 500 mile race.
This is an online version of an award winning article I wrote for Indianapolis Monthly which details my experiences at the all-handicapped school I attended for 13 years. This look back began when I attended a class reunion that marked the closing of the special school. “The Reunion” won “Best Magazine Feature – 1987” from the Indiana Chapter of The Society of Professional Journalists – Sigma Delta Chi. The story is a but melancholy which reflected my feelings of the time. It conclude with a recommitment to do something with my life and I believe it was a substantial turning point towards the joys I feel today.