NeonBlue Dreams
On disability

I recently got involved in a debate on a forum about disability, my response to which actually forms the basis of this blog entry. The debate was around whether having a particular medical condition, in this case IIH makes you disabled. One forum member did comment that a simple yes or no would have sufficed but as is my way, off I went and dragged out the old soapbox, and up I climbed. So here it is – my take on the usage of the word “disabled” and “disability”, and what it means to me to be disabled…

If people want the short version of why I identify myself as being disabled, I usually describe it as that one way of looking at it is that the “disability label”’s just a short-hand type of thing. Rather than saying “I have X, Y and Z, and because of that I can’t do A, B and C (or D, E or F come to think of it either ), it’s at times just easier to say “I’m disabled”, and certainly when filling in forms and stuff they don’t particularly care precisely which “X, Y and Z” you have.

The debate stemmed from someone filling in a job application form, and wondering whether or not to tick the box in response to the do you have “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities”? question, which is from the Disability Discrimination Act definition of disability.

As far as the equalities section on forms and stuff goes, a lot of the time it’s a statistical question they have to ask. I work in the public sector and practically everything we do we have to supply equalities monitoring data for, partly as a result of the fact that public bodies now have a legal duty to actively promote equality of opportunity for disabled people. That came into force in 2006, and a duty to prmote equality for other equalities groups has been phased in.

With regard to disability though, for anything employment related, ticking that little box in the equalities section of the form can make a difference as to how you get treated. If you meet the requirements of the Disability Discrimination Act’s definition, it can make a difference as to how you’re treated and your entitlement to certain things. If you’re classed as disabled employers legally have to make reasonable adjustments to your workplace/working role to take account of your disability if it’s reasonable for them to do so, and from a job application/interview point of view, if you’ve stated that you have a disability they can’t discriminate against you and not employ you simply because of your disability. In redundancy situations too where redeployment may be an option employers have to take account of your disability and offer you suitable redeployment opportunities.

The old definition of disability used the “medical model” of disability, and basically defined a disability as having a particular condition or impairment and the effects that has on someone. With the medical model of disability the emphasis is on “curing” the condition, or controlling it, and the place of the medical profession in the medical model of disability is central, and that’s the model the DDA definition’s based on.

With the new definition of disability, which uses the “social model” of disability it’s not about what’s wrong with you, but says that it’s the barriers and prejudice and exclusion by society (whether intentional or not) that decides whether you’re disabled or not. It’s a bit confusing, because the DDA definition uses the medical model of disability to define disability, but the requirement of employers to make ‘reasonable adjustments’, and that on service providers to make their premises and services accessible follows the social model. With the medical model of disability, the disability’s seen as an impairment that needs to be fixed, which okay, if you’re talking about IIH may very well be the case. With the social model of disability though it’s more about people, and society, accepting your limitations, accommodating them, and seeing you as a person, rather than a disability which just happens to have a person attached to it.

Someone in the whole debate which started me off on this ramble did comment that they were worried that if they classified themselves as disabled, they’d start putting restrictions on their self over what they could and couldn’t do. Yes, disability can be a state of mind, and I’m sure we all know/know of people who use the “But I’m disabled!” line to avoid having to do things, whether that’s work or anything else, but it’s only a state of mind if you let it be. I used to be quite active in local disability groups, and I’m now quite happy to stand up and be counted and say “yes, I’m disabled” (though I have to admit it took me a while to get to that point), but one of the alternatives to disabled is differently-abled. Being disabled doesn’t stop me from doing anything (okay, apart from running a marathon or anything that involves moving around too much ) – I do things differently now, and it might take me longer to do something, but my life didn’t stop the moment I decided that yes, I am disabled, and though there are things I can’t do, there are plenty of things I can do.

For me, saying that I’m disabled is partly a short-hand way of saying I do have long term problems without necessarily having to go into the details of it all, and partly about me standing up and saying yes, I have problems, and there might be things I can’t do that you can do, but that doesn’t mean you’re any better than me, or that I’m going to keep quiet about not being able to do things because of people’s prejudices and lack of foresight. People do treat me differently because they see me stumbling around with a wheeled walker – I know they do.

A couple of weeks ago I saw an audiologist I haven’t seen before, and who didn’t know me and didn’t know my history, and he spent the entire appointment talking to me as though I was an idiot, launching into an idiot’s guide to tinnitus and told me I shouldn’t let it worry me. I told him I didn’t worry about it and that I managed quite well with my coping strategies that distract me from it, and he changed his tune completely when I told him that I’d written a leaflet on pulsatile tinnitus which my local audiology clinic now use for their patients because they liked it so much and they hadn’t got a leaflet specifically on pulsatile tinnitus. Once he realised I do have a brain and I’m not about to sit around and watch the world go by, he changed his tune completely. Only the other day at work I was waiting for the lift to come to get back to the office after I’d been upstairs for something, and this woman comes up to me and says very loudly and very slowly, “Do you need any help getting upstairs?” Now okay, she may have spotted my hearing aids and thought she needed to speak up a bit, but even though I’ve got short hair, it pretty much covers my hearing aids and unless you know they’re there, it’s not easy to spot them. Probably she thought she was being helpful, but I certainly don’t appreciate being spoken to as though I’m a child. I guess she was expecting me to say, “Oh thank you, that would be so kind”, but I didn’t, I said (quite politely considering I was fuming) “No thanks, I’m fine…and it’s my legs that don’t always work very well, not my brain.” She apologised, and I said it was fine, it happens a lot, but hopefully the next time she meets a disabled person she might stop to think about how she approaches them, or indeed whether it’s right to approach them and ask them if they need any help. If I need help with anything I ask for it, and generally other disabled people I’ve met say the same – if you need help you ask for it. When you’ve lost a lot of independence, you try and do whatever you can do, within reason, to maintain the independence you’ve got left.

I’ve seen it many times before – the look you get from some guy in a pub you’ve got chatting to who suddenly realises when you stand up that the walker parked in the corner’s yours, and not the little old lady’s at the next table. I’ve seen it in job interviews – you phone a prospective employer and they’re keen to meet you and want you to go in for an interview, but then you get there, and suddenly the job spec’s changed just slightly, not hugely, but enough so you’re no longer the ideal candidate.

I was probably a bit of a stroppy cow before I developed IIH, but since I’ve come to the conclusion that whatever this damned body of mine decides to throw at me, life’s too short for me to sit around waiting for the world to become enlightened. If a shop’s inaccessible to me, I’ll tell them about it, not in a nasty way, but to educate them and point out that because they’re inaccessible they’ve just lost a potential customer, and that there’s plenty more people out there who’ll have similar problems. On the web design forums I hang around on, these days I’m quite happy to stand up to the web designers that don’t think it’s worth their time making their sites accessible to people with disabilities. Quite apart from the fact that they have a legal duty to make their site accessible if they’re providing information or services, or they’re retailing online in the UK, just as physical bricks and mortar shops do, they’re losing themselves potential customers if their sites are inaccessible. I’ve had spells when I’ve relied heavily on my screen-reading software on the computer when my eyes have been bad, and I’ve come across some absolutely appalling sites that it’s just not possible to access with a screen reader.

When I got involved with a local disability group, it was partly to give myself something to do, and partly, once I actually got involved in it because I realised there is a need both to educate disabled people about what their rights are, and to increase their confidence, and to educate the public in general that disabled people are just like anyone else, and the only difference between disabled people and non-disabled people is that for disabled people some part of their body doesn’t work like it should.

I appreciate that not everyone’s confident about standing up and saying “I’m disabled”, or wanting to get involved with the disability rights movement, but like I said, I’ve always been a bit of a stroppy cow, and I do believe that at some point in the future we might reach that utopian world where people are accepted for who they are, without prejudice, whether they’re disabled, male, female, straight, gay, from an ethnic minority, etc… I’m a bit of an optimist like that, but I wouldn’t keep plugging away at it if I didn’t believe that it’s possible to make some progress. It took a hell of a long time for women to get the vote, but it happened in the end, but that wouldn’t have happened if the suffragettes hadn’t stood up and demanded the vote. Like I said, I know that’s not everyone’s cup of tea, but that’s just my take on it.

I might be quite happy to stand up and say I’m disabled, but I’m first and foremost Rachel – everything else is just a label if you like. I’m a person first and foremost rather than a collection of symptoms. Whether you have a disability or are disabled is all just semantics in the end, but of course that can be important in how you perceive yourself. One person in the debate said:

The way I think of it is that on forms and official things I am disabled but I remove myself from the word completely in the same way any one word has a different meaning to everyone. I also think of it as I have a disability which is only a small part of me rather than I am disabled. That sounds like I am completely unable.

A lot of it comes down to confidence, and I can understand that point of view completely. When I was doing a lot of work with a local group for deaf people we ran a series of workshop and training sessions, including one on confidence-building. Of course in the Deaf community there’s a lot of heated debate anyway over whether being deaf is a disability anyway, and Deaf BSL users in particular have a tendency to describe themselves as a linguistic minority rather than disabled. I found that very difficult to understand until I learned more about Deaf culture. Through the various training sessions though I talked to many deaf/Deaf/deafened/hard of hearing people, and opinion varied greatly as to whether they considered themselves disabled or not. When it comes to specific medical conditions opinion tends to be even more fiercely split, and there are a lot of people who still equate disability with the medical model view that a disability is being blind, or being deaf, or being unable to walk. People with a disability tend to fear being “labelled”, and rightly or wrongly the semantics over whether you have a disability or are disabled is a huge barrier for some people, and a barrier than in some cases can prevent them getting some of the help they may be entitled to if they dared to define themselves as disabled.

At the end of the day it’s that defining yourself, labelling yourself as something, that people are fearful of. For me, I’ve got past that worry over defining myself as anything, though I’m not saying it was quick, and I’m not saying it was always easy. There are a number of labels I could assign to myself, for example apart from being disabled, I’m also female, I’m also a student (albeit a part time one), I’m thirty-something – you get the idea. There are all sorts of labels I could pin on myself, and at times rather than the long-winded explanation, I do, but even if you put all those different labels together you still don’t come up with me. More importantly than all of those labels, I’m me – I’m an individual, and I’m unique (”Thank god for that!” cries the amassed audience of the blog – both of you ) and it’s the combination of those labels, and the uniqueness of “me” that makes me what I am, that makes me Rachel. I guess in a way it’s kind of like Gestalt theory – the whole is greater than the sum of it’s parts.

If people have a problem with my disability(ies), that’s their problem, not mine – unless their problem with my disability(ies) makes it my problem, if their attitude to me makes it so that I can’t do whatever it is their attitude is stopping me doing that anyone without a disability can do and take for granted. I’ll work with them to try and educate them, though perhaps educate’s too strong a word. Okay, version two of that sentence goes – I’ll work with them to try and explain to them how their attitude affects me, and I’ll try wherever I can, within the bounds of politeness, to raise any issues I can see that may cause other people with disabilities to be disadvantaged. At times I’ll no doubt get up on my soapbox and ramble on as I do, and some people may find that offensive or think it’s too “in your face”, but as my mum used to say about me, I don’t suffer fools gladly, and if I see what I think’s injustice in the world, I’m not going to sit by and let it pass.

As I said, if someone’s got a problem with my disabilities, it’s their problem, not mine. I’ve accepted that this is how life is, and as someone said in a film I admire greatly, “If you can’t fix it, you gotta stand it”. Medical science hasn’t yet come up with anything that’s going to fix this damned body of mine, so I’ve gotta stand it. So I’ll say it again. Yes, I’m disabled (but that doesn’t make me any less able to do many things), but more than anything else, I’m Rachel.

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