Monday, May 07, 2007

Two stories: invisibility

Only a week too late for Blogging Against Disablism Day (punctuality is overrated), I want to tell two stories, about visibility and invisibility.

The first involves me and my wheelchair (good old Marvin, who is still falling apart beneath me on a regular basis, but gets me to the libraries and bookshops). I'm in a cafe which shall remain nameless because its reputation would do nothing for the I live an ethical lifestyle and believe in social justice image which I am keen to hang on to. Having paid for my food, and while waiting for the helpful server to bring it to me, I've just moved away from the counter to put my money away. I reach for my bag, but I leave one strap across the back of the wheelchair - much as I keep one strap over my arm when I reach for my bag while I'm walking.

Suddenly, a staff member who has clearly had too much of the wrong sort of disability awareness training grabs the strap of my bag. I don't hear her say "Here, I'll help you," because I'm busy panicking that someone is trying to rob me. I grab it back and yell "Get off me!" before realising that she actually thinks she's being helpful. I back away from her at 4mph, suggesting that she might want to ASK next time before being that helpful again. This incident is then almost repeated, with just slight variations on a theme, when a cleaner makes a similar error in judgement about whether I want to transfer into a chair or not. (I don't.)

This is a fairly average experience for a person using a wheelchair, and I've only just begun to experience the whole world of weird ways in which people react to me when I'm not so much walking as the other thing. Still, I don't mind that much. I mean, obviously I get irritated on occasion, and in this instance I was all ready to write to the restaurant involved offering them half decent equality training to go with their exciting new ramp and automatic doors. (They'd have been so pleased.) But there's a reason why I didn't.

The second story takes place with my stick. (I haven't named her yet. Suggestions on a postcard, please.) It's hard to choose just one story, since there are so many like this, but let's go with another experience at exactly the same cafe, to make all things equal. I spend five minutes standing in the queue, with no facilities offered for those of us who can't stand for that long without significant pain resulting. I ask for help and am ignored. I get my food and drink (no offer to bring it to my table this time) and struggle to carry it to my table, limping across the cafe with my stick under my arm. Just as I'm nearly at a table, my tray flings itself towards the floor, in that way that things I'm carrying have a habit of doing. After a silent moment in which I curse Fibromyalgia and all its minions, I bend down and struggle to pick up whatever I can reach. Every head in the room turns towards for me, then turns away again. Does an ever-caring staff member offer to help? What do you think? Eventually someone cleans up the mess, but I'm already half-way out the door by that point.

This situation, too, is not uncommon. I feel just as ignored and embarassed every time I get complaints because I'm slow to get money out of my purse when my hands aren't working, every time I stand with my stick in full view of everyone in a crowded train carriage and don't get offered a seat, every time someone gives me that but you're young and healthy look when I go into an accessible toilet. Amusingly, most of these incidents take place while I'm carrying a stick - I'm not even that hard to spot. I no longer leave the stick at home, even on the few days when I don't really need it. And things are even trickier for those whose impairments are completely hidden.

Invisible disability has two aspects: impairments that cannot be seen and social prejudice that is rarely recognised. I'll never forget my wheelchair-using colleague who once told me, at an NUS Disabled Students' conference no less, that mental illness and other invisible conditions "aren't really disabling" and that I should just be thankful I could walk. Or the Deaf friend who took offence when his hearing impairment was referred to as a hidden disability and responded with an irate "No, it's a real, physical impairment" - implying that invisible conditions are not. That's when I first realised that I was, once again, lost in a limbo of invisbility (one might cross reference bisexuality here). In celebration of Blogging Against Disablism Day (even though I missed it), I'd like to highlight the prejudice and stigma associated with so many impairments that can't be seen, and the reality of invisible disability.

So I shall keep on laughing at the stupid people who think they're being helpful or nice or inclusive by treating me like an idiot when I'm using a wheelchair. They need educating, absolutely, and they need to rethink their attitudes. But I, personally, prefer those 'trying to be helpful' attitudes to the way I get treated when I'm invisible. I'm sick of everything from "You look fine to me" to suggestions of miracle cures to it's all in your head syndrome to being ignored by social services to being turned down for benefits to being mistreated by ignorant doctors to being ignored by the world. Invisible disability. It exists. We exist. We complicate things - social policy, medicine, education, employment, the law. And we're a fairly permanent fixture. Hi there. :)

So in celebration of Blogging Against Disablism Day on 1st May, remember that many disabled people get lost in the crowd a whole lot. Ever thought of offering your seat on the bus to the person who looks like they need it? It might make them more irritated than you can imagine. Or they might appreciate it more than you can imagine. If it were me? It could go either way. (Isn't that the nice thing about being an individual? Not to mention a manic depressive. *grin*)

Little update... Social care has been approved and is being sorted. DLA hasn't, and I may appeal. Lyrica is helping with pain. Life is crazy. We need to move house (again) and I don't know how we're going to find somewhere with half-decent wheelchair access which we can also afford. Hydrotherapy is incredibly painful, but good. I love my girlfriend, of whom I am particularly proud this week. I am happy. Don't forget the Great London Trek - it's this Friday, so please get sponsoring us! Help raise awareness of one of those invisible conditions that need to be taken much more seriously by medical professionals and many others in the UK. And thank you!


birdychirp said...

Hoorah! re social care and great post. Using a wheelchair is as you say in some ways easier than using a stick etc - I remember it well.

And I HATE with a passion when disabled people try to instigate a pecking order with people with other disabilities - it's not an f'ing competition folks!

Anonymous said...

I get really odd looks as I navigate life with my cane. I had a whole train platform full of people watch me make my way down the steep stairs. I felt like passing the hat around when I got to the bottom. I am disabled, not performance theatre.

Never That Easy said...

Isn't it ridiculous that there are such a range of attitudes - and that people with FMS get to experience them all? Yeah, biiig fun. Anyways - you managed to post half way between BADD (May 1st) and National FM awareness day (May 12th), so you can count your wonderful post for both things!

Naomi J. said...

birdychirp - I agree. We have enough problems with other people's attitudes towards disabled people - we don't need to discriminate against each other!

riayn - Yeah, the 'other side' of disability is, of course, the opposite of invisibility - becoming bloody obvious to everyone who finds us amusing. Even when I'm in a wheelchair, though, I feel invisible more than I feel obvious.

never that easy - Ah, International Fibro Awareness Day will involve a whole other post, partly about the Great London Trek ( ), of course!

Anwen said...

Hello, I've just read your posts and just wanted to go 'wow, you are ace!' I have FMS or ME or I dunno, something or other, and I'm in London also, if it's not too forward or whatnot, I'd really like to e-mail you as I'm trying to make contact with other people in similar situations and that... Um, anyway, my email address is and I promise I am a nice lady and stuff! (Too tired to construct good introduction, sorry!)