The other day on one of my Facebook epilepsy groups, we started a discussion about the effects of epilepsy on life in general. One of the participants, let’s call him Carl, was very insistent that epilepsy wasn’t really a disability. In fact, he said, there was no such thing as a disability.
Of course, this got a lot of people riled up. Assumptions were made, demands reasonable and not were made, and I stepped out once it got too loud for me.
It turns out that Carl is a nurse in a rehab facility. He’s apparently done a lot for his patients, and he’s seen what modern technology and medical practices can accomplish. He’s managed to get his patients to the point where they don’t see themselves as disabled. So he feels like there’s nothing that’s really a disability. He feels strongly that thinking of yourself as disabled, or as a person with a disability, is harmful and negative.
And I see his point. A hundred years ago, I would have had a much harder life than I have now. I’d have more seizures; they’d be harder on me; I’d likely die much earlier. I’m much less “disabled” in that way than I could have been.
And I think it’s amazing that Carl has managed to do that with his patients. Taking someone who feels there is so much they can’t do, and helping them feel able to accomplish what they want? That’s huge. I admire him for that.
But still. I feel like there’s something important to be said by the people who disagreed with him. So I started thinking about what it might mean to be disabled by a condition. And I think I’ve come up with something.
Disabilities aren’t about a condition. They’re personal and social more than they’re physical or mental. Whether a person has a disability or not depends much less on the condition they experience than on the attitude they and society have towards them.
So here’s my definition of a person with a disability. It’s long, so bear with me. I’ll go through it a piece at a time.
A person with a disability has a chronic condition that prevents them from functioning at the level they and society expect, but can be improved by external aids such as training, assistance, accommodations, technology, or medication, where these aids are not mandatory, and aren’t usually needed by, requested by, or given to the general public.
Wow that was long. So here it is piece by piece. To have a disability:
- You have a chronic condition. I’m a little on the fence about this, honestly, but most of the time I think about people with disabilities I think about people who have lifelong conditions.
- Without any external assistance, you can’t do what you want to do, or what society expects. And here’s where that “societal and personal” thing comes in. If society expects me to drive a car, they’ll probably be disappointed. If they just expect me to get around, and there’s decent public transportation, we’ll all be fine.
- Training, or therapy, or accommodation might help. So might meds, or technology like a prosthesis. Or, of course they might not.
- What helps you isn’t something “normal” or “usual”. I can’t get my meds over the counter. You can’t get a wheelchair at the department store. Because people don’t need them. They’re made to cope with disability.
- What you need isn’t mandatory. If every building was required to have elevators and wide corridors, people who use wheelchairs wouldn’t have any issues. But (in the US at least) that’s not a requirement for older buildings. So wheelchair users aren’t guaranteed to be fine everywhere they go.
I think I get these ideas from my experience as an epileptic whose epilepsy is mostly controlled. I don’t run into a lot of difficulties most of the time. But if I didn’t have my meds, that would be a serious problem. It’s not just about what I can do. It’s about what has to happen for me to be able to do it.
Same thing for disability in general. Someone who needs a wheelchair can be fine – as long as there’s a wheelchair and room to use it. If not, there’s likely to be an issue.
So that’s disability, I think. It’s not the condition as much as the person and their society. With proper support, we can (often) be fine. But if we don’t have that support, we’re not fine. If we can’t guarantee it’ll be there when we need it, we’re not fine. If our condition and what we need for support aren’t accepted as normal by society, then we’re not fine. We have a disability.