25 April 2012

Disability Tango

The April DSMA Blog Carnival prompt and some other recent discussions got me thinking about disability in general.

Disability. Handicapped. Disabled. Those words leave a bad taste in many people's mouths and minds.

People make comments (and I don't think they realize how offensive these comments are) such as "I would rather die than have your disability", "I could never live with a disability", "How can you live with your disability?"

And then these same people, without irony, say things like "You should rejoice in being disabled!" or "Your disability is a blessing!"

And then they turn around and ask just flat out stupid questions like "You're allowed to get married?" or "How much does your disability drain our economy?"

And then they turn around, again, and wonder why people with disabilities are on guard and don't give them health updates.

It's no wonder that many shy away from the disability label.

There's even a discussion on tudiabetes about T1 being a disability. There are comments were people are genuinely shocked that T1 is a disability. Umm...diabetic children wouldn't be able to have a 504 in the US if T1 weren't considered a disability.

The Americans With Disabilities Act (ADA) states that a disability is
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).
(2) Major Life Activities
(A) In general
For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
(B) Major bodily functions
For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
I know. Legal gibberish.

But I can understand the confusion. I don't always feel disabled, even with T1. When my bg is 101 mg/dL, when I'm just hanging out, when I'm laughing and enjoying life, I don't feel disabled. I feel enabled.

But there are other times when I've been up all night dealing with highs or lows, when I have "my heart thinks we should randomly have a pulse of 300 right now" episodes, when depression takes control, when any of these problems wear me so thin that I don't feel human...I feel disabled. I feel broken.

I want to be comfortable in my own skin, but that requires being comfortable with all the imperfections, the disabilities, as well.

But there are two sides to this tango, each holding a gun to the other sides head. What about cures for all these disabilities? Should I hope for better cyborg parts, better medicine to make my disabilities easier, but they won't go away? Or should I hope for a cure? Am I comfortable enough in my broken body that I think of my disabilities like my hair (it's there, and sometimes there are bad days)? Or am I frustrated enough with all the medical problems that I'm willing to give up things that are apart of me?

Do I regret being disabled in all the ways I am? No. Am I over thinking this? Maybe.

3 comments:

  1. I wonder if we will ever find a label that works, one that can capture the full and complete human life that "disabled" seems to try to limit.

    ReplyDelete
  2. I am a disabled person in the same way as I am a happy person or I am female or I am Steve's wife or I am a fan of Bill Bailey.

    Not moral issues.
    Part of who I am.
    Not always especially or at all relevant to the situation at hand.
    Not immutable (sometimes I am sad, sometimes Mr Bailey will tell a joke that lands a bit flat) but true "as a rule".
    Issues which may influence how other people behave towards me (in a positive, negative or neutral way).

    I regret that some people are jerks about it...

    ReplyDelete
  3. "I want to be comfortable in my own skin, but that requires being comfortable with all the imperfections, the disabilities, as well."

    I love this quote. But I recognize what you said about the tango, too - I had a debate along those lines recently with a friend on Facebook, and I realized that I didn't have it as...worked out as nicely in my head as I thought I did. But I'm learning that, unlike when I was younger and thought I had all the answers, that I rarely have things worked out as nicely in my head as I thought I did, lol...

    Great post.

    ReplyDelete