naming disability, and cripspiration

[sammason]

What do you call your disability? Rude words, often, of course. But more seriously I'm unsure whether or not I should use terms like 'an autistic' or 'a diabetic'. I tend to be cautious, and say things like 'a person who has autism', because I know that I wouldn't be very impressed if somebody called me 'a multiple sclerotic'. But perhaps it's just

Comments

[sammason]

So, if you don't mind me asking, what do you say to people about it?

Recently I've been noticing (and not in a good way) how my wheelchair is the total of my disability in many people's eyes. For me it's liberating; for many bystanders it seems to define my disability. I don't take offence or anything but I do try to tell people what I find they need to know.

[sammason]

Yes, people do make strange assumptions. I've had to ask somebody to step aside because per feet were blocking my wheels, then I realised phe was reaching over me to hold a door open! (a door at my workplace, which I often open for myself.) But do you find that often, a gracious response is the right one? That it's the thought that counts? In fact I've just invented a new word: cripgrace.

[alicephilippa]

Sometimes "a bloody nuisance". One of the problems is that fibromyalgia has had so much negative spin by the media that too many folks think it's just a way of skiving. I'd like to see one of the many who think that coping with the continuous chronic pain and fatigue. That's all a rant for another day.

I'll say I have fibromyalgia, I'm not a fibromyalgic as that to me suggests that is how I identify rather than something I have. Similarly with the other conditions I have.

[sammason]

Yes that does sound crap. Perhaps a bit like the ways people with ME and people with autism have suffered in the past (and perhaps do still suffer). I feel privileged in many ways and one of those is the fact that nobody ever questions whether my MS is real.

Olease feel free to rant on this comm if you want to.

[farnam]

personally, I always prefair 'a person with...diabeties/dwarfism/etc/etc rather than 'a diabetic/a dwarf' etc becasue no one is only their disability. Even where we sometimes wear our disabilities with pride, or want to make them visible, talk about them to gain some understanding

[sammason]

Thank you for writing this

[sushioga]

I don't call it anything unless someone asks. For me, it would be akin to naming my eyeball or my leg. It is a part of me, like it or not (and believe me, I don't). I think everyone is different in their view of disabiities in the same way you address people. If somebody wants to be called Bunny instead of Margaret, you do it out of respect for them.

[sammason]

Yes, it's different for different people.

For a while I was listing 'things people shouldn't say' in my mind but I'm glad I never got around to writing that list down. What changed my attitude was a page on the UK MS Society website, which used some of my 'never say that!' phrases. Obviously, whoever wrote that page is on my side. So I decided it doesn't matter whether phe wrote 'ended up in a wheelchair' or whatever it was that squicked me.

It's about good manners really, isn't it? Sometimes I do snap at people who burst into peals of laughter at my symptoms ('Well YOU won't be getting up this staircase, will you? HA HA HA!') but other times I let it go.

[sushioga]

It IS about good manners and being socially and emotionally intelligent. You should give yourself credit for being sensitive enough to actually think about things when you're given this new information.

I usually don't mind when people joke(the jokers usually know me) and laugh along when they say, Well, it looks like LISA willl be driving home today..oh wait, I'd rather ride with the drunk!

I would nevet tolerate such a comment from a stranger, but it's ok coming from someone who knows how I struggle on a daily basis and jokes truly in good fun and not out from evil motives.

[sammason]

I've just noticed myself saying 'an alcoholic' as a noun. Isn't that what AA people do? Like 'I'm Mandy and I'm an alcoholic. It's 23 days since I last drank alcohol.'