There is something I'd like to blog about today, but I want to be careful about how I say it.
Having a disability is a 24/7 gig. What I mean by that is that for many of us with disabilities, our condition doesn't change. That's certainly true with a spinal cord injury. If there are things that I can't do on Tuesday, I'm not going to be able to do them on Thursday.
On the other hand, it's not useful to think of disability as an illness. Some people still do and that gets in the way of understanding about disability and having an impairment(s).
The reason I'm talking about this is because I often have conversations with nondisabled people who equate sickness and illness with disability. Sometimes they will even say things like "Well rest up and you'll be able to do x,y or z" or treat me like I'm sick and dying. The reality is that, no matter how rested I am, I'm paralyzed. I can be fresh as a daisy and I'm still going to be paralyzed. It is also true that I can be healthy as a horse as they say and not be able to button a shirt. (Neither can a horse, when you think about it.)
This is where a preprogrammed response of pity comes in and it's why I'm hesitant to talk about this. But let me explain that I don't feel bad about being paralyzed. I don't feel overwhelmed when I wake up in the morning because I know I'm paralyzed. I know I'm paralyzed when I go to bed and when I wake up.
I think because living with paralysis or other impairments is outside the scope of ablebodied existence, people sometimes think of disability as illness. it is within their experience and maybe they're thinking "Oh yeah it's like having the flu." It's not because the flu is a temporary state and when you have the flu you're also sick. A disability is a permanent state and you are not sick.
As long as we think about disability as "sickness", we're going to have all kinds of misunderstandings and barriers. Who is going to hire a sick person, for example? But when you see a person with a disability as someone who does things in a different way because of an impairment, that's a whole different approach. We can even start seeing people as resourceful and creative.
And the other thing is maybe we could all stop waiting to be cured before we work on quality-of-life issues. If you think of disability as temporary sickness waiting for a cure, then there's a resistance to providing what people need for their impairments, like housing. After all, the goal becomes a cure, not maximizing people's potential as they are. This is not to say that working toward cures is a bad thing. Of course it's not. It's only when it's done to the exclusion of putting resources toward quality-of-life issues in the here and now.
[The links in this post are from BADD 2009 - you can find more posts here.]