After a summer of setbacks and recuperation, last night I finally went out with my boyfriend. It felt fantastic to get out and give up the worries of the summer: fearing that raising my left arm too much had caused my defibrillator wire to shift, hearing my chest rattle from a surprise bout of pneumonia, and waiting for the results of the latest echo to let me know if the clot in my left ventricle had finally dissolved as much as it was going to.
The evening was going well, we finished a wonderful meal at a place called Il Fornello in Toronto and ventured downtown to see the movie Tropic Thunder. At the movie theatre, however, an incident involving the handicapped washroom stopped me short.
Journeying first from the subway to the restaurant and then from the restaurant to the movie theatre tired me out. My lower back was aching, and my balance was becoming even more unstable than it usually is. So when it came to going to the bathroom before the movie, I picked the handicapped washroom on the same level as me as opposed to walking up two flights of stairs to get to the regular washroom.
I tried the doorknob and found it to be locked, so I waited my turn. After the person who was in the washroom exited, I went in, locked the door and did my business. While washing up, I heard someone try the doorknob and then begin knocking on the door. Undaunted, I dried my hands, gathered my purse and shawl and exited the washroom. I found myself face to face with an older woman who looked me up and down, and said to me, “You’re not even disabled, are you?”
My bewilderment-delayed response of “Yes, I am” fell on deaf ears as she had already entered the washroom and closed the door behind her.
Although the woman’s comment may have been based on the fact she thought I was using the handicapped washroom because I was simply too lazy to go upstairs, she hit upon something I’ve been debating in my head for quite some time. Am I disabled?
In the legal eyes of Ontario, I am. I get monthly Ontario Disability Support Payments (ODSP), and my parents’ insurance plan still covers me even though I’m 25 because they too consider me disabled.
When it comes to accessing the Toronto Transit Commission’s Wheel-Trans program tailored to help disabled people get around, however, my lack of an assistive device means I’m not disabled enough to be eligible to use their services. The trouble is, I can’t help but see their point. Although I use the term disabled to access services I need, I don’t feel it truly describes me. And I don’t mean in the “no one is disabled, we’re all just differently-abled” sense of the word.
Defining the terms is difficult because once you define one term you have to define a bunch of terms you used to define the first one with. To me, a disability is a condition affecting a bodily system or systems not essential to maintaining life.
Thus, when I think of someone who is disabled, I think of arthritis, Parkinson’s Disease, and blindness to name a few. All of those conditions affect a person’s quality of life, but will not cause the person to die. However, there are exceptions. Until I took an American Sign Language class in my first year of university, my definition also included deafness. Once I had the opportunity to learn about the rich culture the deaf community has I also learned Deaf people do not consider themselves disabled either.
Chronic illness, then, is a condition affecting a bodily system or systems essential to maintaining life. Examples include cancer, any condition causing organ failure, and diabetes. Chronic illnesses also affect a person’s quality of life, but contain the added bonus of issues of mortality.
Some conditions fall under both definitions. For instance, I have Glycogen Storage Disease, Type 3A which affects the muscles (a non-essential system), as well as the liver and the heart (both essential systems). Other conditions start under one definition and move to include another with their progression, such as certain types of muscular dystrophy.
Defining disability and chronic illness helps me sort out why articles on disability issues don’t speak to me and how the needs of each are different. However, both are complex issues and pinning them down with such simple explanations feels like I’m missing pieces of a very large and complicated puzzle.
So I’m putting the questions out there for you to answer:
How do you define disability and chronic illness? What effect do the terms have in your life?