Sunday, November 16, 2008

Finding a Definition for Disability

The term "disability" is one that I've wrestled with for a years.  For a long time I equated the term disability with "handicapped."  When I heard the term disability I visualized wheelchairs, crutches, or a blind man's cane.  I'm not saying that it was correct, that's just what I thought.

Last year, while I was still attending CWU, I took a class with the rather heavy title of "Students with Exceptionalities." We talked about students who faced extra challenges at school because they are gifted, disabled, or faced difficulties in their home life that affected their performance in school.  Our main focus, however, was on students who had disabilities.

I learned many things in that class, but one thing that stuck out at me is that the term "disability" covers a wide range of conditions, and that it doesn't necesarily equate with an obvious handicap.  In fact it may not really handicap a person at all!

To have a disability simply means that there is an area in one's life where you are not able, be that physically, mentally, or even emotionally.  It may not be something that affects your daily life, or it may be something that you learn to overcome in such a way that it no longer affects your daily life. 

Why is this distinction important? For some people it might not be.  For me it was vital for coming to grips with who I am.

What do I mean by that? Well, I know I am not defined by my limitations, just like I'm not defined by my abilities, but I do think part of being healthy mentally is thinking about yourself accurately.  In my case, a part of that has been coming to terms with having a disability.

Part of my struggle is that my disability is not one that most people would automatically recognize as a disability, a health problem, but not a disability. Why? I have asthma.  Of course, so do 1 in 4 of other Americans. That's approximately 200 million people. For most of these people asthma is only a minor annoyance, many of them don't even carry their inhaler on a regular basis, and for many more a simple pill a day controls the vast majority of their symptoms.  And, for a large portion of my life, I was one of those people. My asthma was controlled.

Backing up a little, I was diagnosed with asthma when I was 7 years old. I had always dealt with some allergy problems, and occasionally that would lead to wheezing, but that was the age when they first gave me an inhaler.  During those early years I rarely had to use my inhaler, and when I did, it would take away my systems pretty quickly.  By the time I was 10, though, it had gotten to the point where I quit my basket ball team because I was having attacks too frequently. 

Over the years my asthma problems fluctuated.  At times it I would be having more attacks, and then I'd go through a period of time where I was under control again.  The one pattern that was consistent was that my problems slowly got worse.  In other words, the bad episodes slowly got worse, and then I slowly had more bad episodes. 

During my high school years my asthma got to the point where the attacks could be classified as "life threatening."  Still, it didn't interfere with my life that often.  When I had a flair up it would, but for the most part I'd go about my life, and I just avoided the things I knew would trigger an attack.

I didn't really start working seriously until I was 19.  At that point my asthma had settled into a pretty predictable pattern. Once or twice a year I'd get a cold that would settle into my lungs, I'd have a bad flair up, the doctors would have to heavily medicate me, and it would take a week or two to get back to normal.  This, as you can imagine, was rough at work.  When I was just a lowly crew member it didn't matter that much, but I quickly moved up to management.

Let me tell you, when your in fast food management they expect you to show up for every single shift! I can't tell you how often I'd go to work on low oxygen, or my friend John would cover for me while I sat in the back trying to get my lungs back under control.  Still, there were times I had to go home, or couldn't make it to work at all.  Always there was pressure to get better as fast as I could.  I remember my boss sitting me down once and telling me I had to "take better care of myself" so that I didn't have as many asthma attacks.  I was seeing the doctors regularly, and taking all my medication, there wasn't much more I could do!

I remember right around the same time the company got sued on an ADA violation.  I don't remember what it was, but I remember at the time it seemed like a relatively minor thing to be making such a big deal out of.  I also remember wondering where the ADA was for people like me as I was getting hassled for having health problems that I had no control over.

Now don't get me wrong, I'm NOT trying to bash the ADA. It was just frustrating for me, and it continued to frustrate me with every job I had after that.  Employers like you to show up regularly, and even doctors notes don't always help.  They will "accept" it, but you often feel the pressure of their frustration weighing heavily on you. 

Somewhere along the line I finally was willing to admit to myself that my asthma was a disability.  I think the fact that I could attach the term "life threatening" to my condition was one of the things that helped me come to accept that.  Still, I've always thought of the term "disability," when applied to myself, with a bit of derision, because it's not as if other people would really consider it a disability.

I suppose I still didn't really consider myself as disabled. I had accepted the term on a surface level, but not fully.  That became crystal clear to me earlier this year after my asthma became much more severe than it ever had been before.  I was forced to quit my job and found myself in constant negotiation with my teachers to allow me to turn my assignments in late. 

Acceptance has been a slow process full of small emotional shocks.  First I had a teacher tell me I needed to sign up with the school's disability department.  Then I saw a lung specialist for the first time and he was shocked that I wasn't already carrying an epi-pen.  Most recently I've been given a temporary handicapped parking permit to use on my bad days.

I am disabled. It doesn't define me, but it does affect me. Recognizing that fact is one step toward being a healthy and whole person.  For now my disability does handicap me, but I know that doesn't mean it necessarily always will.

I just wish I'd accepted that a long time ago.

I've never looked down on other people who had disabilities, but when I applied the term to myself I saw it as a negative. Saying I had a disability meant I was "less than." I don't know why I had one definition for everyone else and another for myself, but it was a destructive way of thinking.

I wish I'd realized that a long time ago as well.


Kathleen J. said...

You certainly gave me some things to think about.
I have subscribed to your blog and am looking forward to reading more.

Paisley The Jackabee said...

Great post, thanks for sharing.

Anonymous said...

Hi Sweets! I bet it feels good getting that off of your chest.

Be well friend...

Live, Love, Laugh, Write! said...

Thanks you guys :)

TiLT said...

Glad to hear you got past the negative on onto acceptance...I wouldn't be suprised if it was more than 1 of 4 with a disability. Especially b/c, yes, that most assuredly includes mental & emotional...I know I've had my periods where I am affected to the point of disabling...but sure won't let it define me :) Frazzled mom defines me best ;)

Anonymous said...

This is some of your best writing to date - thanks for making me think and relate. :)