By Joel Sheffel
Born in 1944 as a child that was supposed to have fun and enjoy life, I had the burdens and challenges of Rheumatic Fever and Spinal Meningitis to contend with. In those good old days persons with disabilities were not understood and if you were uncoordinated due to your disability, be it visible or hidden, you were fair game to be the brunt of a lot of jokes because you could not be on the athletic teams.
Were it not for the fact that my cousins, who lived in the suburbs and without being asked, agreed to be assistant parents for both my brother and myself, I really don't know what we would have done. Summers were great because most of the time they had us, and they did not stop even when they had their own children. They even at times allowed us to move in with them and we went to suburban schools, not Chicago schools. Of course we got spoiled a lot too.
Although I started high school, I did not finish and by 17 was already working. After all there was no such thing as IDEA or no child left behind at that time.
In 1984 I lost my mother, and in 1985 the one friend I did have, my brother, passed away. Just one month later my dad, a man who had worked all his life, was on his way home from work and was shot and killed on a train.
Boom! Now guess what? I was on my own. This would not have been so bad except that within weeks of my father’s death a new whammy was thrown at me. All of a sudden I began to have seizures. The type of seizure I had – and still have to this day -- allows me to be fine one minute and then the next I would have the paramedics over me or at least be on the floor unconscious. My medicine had to be and continues to be constantly adjusted.
In 1990 I did something I never thought I would do. I applied for Social Security Disability benefits and to this day live on that. This turned out, however, to be a 2-year project to be approved. During this time I received a diagnosis of not only uncontrolled seizures but also of clinical depression.
The seizures continued and doctors became my constant companions. I tried to go to college after having earned my GED.
I signed up for 24 credit hours of classes but came away with just 6 hours of college credit. I also signed up for a computer class that a local insurance company was giving. Little did I know what that knowledge would do and how I would end up using it.
Due to uncontrolled seizures, I was constantly seeing doctors. This also meant constant medical bills from doctors, emergency rooms, ambulances, physiologists and psychiatrists. I was left trying to figure out how all these people were going to get paid.
This pressure got to me and after not just one but five different suicide attempts, and at the end of my rope, I went into a nursing home. Imagine 18 months to get stabilized. This helped but it was an experience I will never forget.
But it was now time to come back to the community and how would I do that with no money for security deposit, furniture, and all the other essentials I would need? Somehow I was guided to the Center for Independent Living (CIL) in the area. They were able to assist me to take part in the Community Re-Integration program they had. This program is specifically aimed at persons leaving places like nursing homes. They were able to help.
Recently you may have heard about the Olmsted Act, or Money Follows the Person; these are aimed at helping to assist those leaving institutions and trying to find housing.
When getting out of the nursing home I noticed the lack of publicity for services that were actually offered for persons with disabilities. I said to myself, “If no one else wants to give publicity to the services offered, I will.”
Six years ago I went ahead and founded West Suburban Access News Association. I had no idea it would grow to the point where it is now or that I would gain the respect of persons as high up as federal officials and then go all the way down to state and local legislators and businesses as well as other advocacy organizations. I had no idea that this non-profit organization in the year 2005 would have 17,000 persons visit its website and in 2006 have over 800 visitors each month.
This just goes to show that there are ways you can get something accomplished and that the meetings and classes that are held have a reason for being held. But by attending these meetings and classes you can become educated. When you are educated you can then help others to understand where to go and what to do in a situation.
Yes I am a person with a disability. No I do not show that I am a person with a disability but I do expect and sometimes need the services and program which are offered to persons with visible disabilities.
Finally, I ask one thing. Remember that everyone is first of all a person and then one with a disability. If you do nothing else after reading this story please go to our page on "preferred terms" and look at that chart and start using those terms as laid out in DO USE. Pass those terms around to your office, your place of worship, your social group and everywhere else you go. Start to treat those with disabilities whether visible or not with respect and friendship and in the same manner you yourself would want to be treated.
(This is based on a submission to us from his website and section called “Life Stories of Adults and Children with A Disability.”)
Edited by Steven C. Schachter, MD
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