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Archive for the ‘Disability’ Category

Flexible lot, we humans. Or at least, so we like to think.

The social model of disability notes that it isn’t physical/mental/psychological/etc. impairments that seriously disable a person. What causes disability is the failure of our communities to adapt to those impairments, to make allowances for them, to fit us in.

There are a few respects in which the social model doesn’t quite work for me – there are no adaptations that anybody could make that would make me able to work full-time outside the home with this level of fatigue, for instance. But there is a lot of truth to it, and a very important point to be made.

The assumption of our society, in which being “abled” gives one significant privilege over those who are not, is that people with disabilities are an aberration, a break from the norm. The adaptations and allowances needed to include those with disabilities are easily seen as a drain on energies and resources, as, frankly, just that little bit too much to ask. Not as the moral right of “normal” people. The perception is that the disabled are a small minority. Add to that the insistence within our culture that there is no middle ground between a grumpy, resentful, “bad” disabled person and a self-sacrificing, “brave” saint who never complains, and you have a deeply fucked-up situation.

It would be fucked-up even if we really were a small minority. However, we’re really not. I’m not going to go into facts and figures now because it is late, and I’d rather quote no figures than the wrong ones. But I think it is fair to say that between physical impairments, mental illness, psychological disorders and learning difficulties, most of us will at some point in our lives suffer from some kind of disability. In fact, the only way to avoid it is to die very suddenly, at a sufficiently young age that none of physical or mental effects of advanced years have yet started to appear. As a thirty-one year old with a walking stick I may be unusual; as an eighty-one year old I would be unremarkable, or even unexpectedly hale. There is a reason why a lot of disability activists use terms such as “Temporarily Able-Bodied” (or “TABs”) to describe people without disabilities. I find those terms somewhat problematic unless I can be certain that the user is counting mental illness, learning disabilities and so forth under bodily impairments, but they still carry an important lesson.

So, what of all of this? Well, a couple of things. Firstly, if you campaign now for better wheelchair/scooter access in your town you may well feel the benefits of that when you are elderly, though I hope that’s obvious. Likewise large-print and audio books in your local library, depression support groups and other facilities, ideally free at the point of delivery.

But primarily what I’m getting at here is that our attitudes as a society towards adapting to the particular needs of individuals within it are in need of a complete overhaul, and a vast injection of flexibility and compassion. Nor do I just mean on an official level, though of course that is an enormous part of it. I mean within social networks, groups of friends, relationships.

Take my friend A, who is a lifelong vegetarian and has coeliac disease. She also loves good food and company, and there is in fact plenty of lovely stuff she can eat, it just isn’t always what people are used to cooking. She is fortunate to have many friends (including myself when I’m well enough to cook, which sadly isn’t very often) who regard catering for those with unusual dietary requirements as an enjoyable challenge, and an invitation to creativity, not as a burden. But the very fact that this is worth remarking on is, frankly, deeply depressing.

Take me. I (obviously) can’t attend late-night social events in the middle of London, especially on a busy night. I sometimes have to cancel my attendance at events at short notice because of an M.E. flare-up. My anxiety disorder is such that conflict can incapacitate me for days, and even the most constructive of criticisms have to be worded carefully to avoid triggering a panic attack. Friends of mine have to allow for these things because I simply cannot function if they do not.

Take my lovely boyfriend. Along with depression and a couple of other things, he has a very serious phobia of smoking and all things smoking-related. He also has PTSD due to an incident at a popular local pub a year or so ago: he now can’t go there, and gets stressed when the place is even mentioned, even though he knows and likes the people who run it. To have a good social life, he needs friends to allow for these things – to not hold all social events at that particular pub, to avoid smoking or preparing to smoke in his vicinity, and so forth.

As many within our society currently view it, all three of us are making unreasonable demands on our friends. I would regard that as an offensively ableist view, obviously. But also a broken one for other reasons.

Let’s add on all the other friends I have with special dietary requirements, physical and/or psychological disabilities – a few of those, with some overlap. And then add those who, say, have particular topics of conversation which are just upsetting for them, or who can’t stay late because they need to get home to the children or the dog. Add LGBT people who may feel unwelcome in certain environments and want to socialise where they know they will be safe. Add those who need their friends to allow for when they are working late or they need to visit their elderly relatives. Add those who are not necessarily disabled, but who are not neurotypical and thus benefit greatly from being communicated with in a certain style that might not be familiar to the communicator. And those are just my friends, a small-ish, young-ish group, ranging from 20-odd to 40-something, for the most part. I am certain there are large numbers of other sorts of allowances friends may need to make for each other, in the short to long-term, both that I’ve forgotten and that I’ve not thought of.

Getting somewhere, am I? Now calculate, if you will, your chances of getting through this life and never having to ask your friends to make allowances for you and your needs.

And the thing is – that shouldn’t be an awful thought. Making life easier for our friends and helping them find our friendships and the world around them more accessible should not be a rare or remarkable thing. It can be complicated, especially when there are lots of adaptations to make at once, but if we’re all working on together then it’s just another challenging and enjoyable and ordinary part of life. We are not a world full of people with no problems, no difficulties, no disabilities. We are a diverse and wonderful people, us humans, and we’ve come so far partly because we’re good at being flexible and we’re good at being strange and because we’re good at looking after each other. So, yeah. Let creativity and compassion reign in our friendships, and in our lives generally. Go that extra mile, and stock that vegan spread and those herbal teas that you don’t drink but your friend does, and check out the wheelchair access and creche facilities at your party venues. And then let’s spread it out wider and try to change our cultural attitudes towards people who need help, and accessibility, and allowances to be made. Because all of these things are normal, and this is what life is supposed to be about. 🙂

Postscript:

After all that ranty idealism, this is not to say that I don’t feel horribly guilty when my friends (and partners) have to make these sorts of allowances for me. Of course I do. I have low self-esteem and of course I’ve internalised all of society’s myths about how heroic and non-complaining and no-trouble-to-anyone I should be. But I do think I should try to feel less so, and encourage others to do the same. Gratitude and reciprocity are much more sensible and much more fun. 🙂

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One of my favourite posts on one of my favourite blogs is this one. Some of the regular writers on FWD/Feminists With Disabilities discuss why they love their bodies. It’s an inspiring, happy, wonderful post.

When I read it six weeks ago, it provoked something of a crisis in me. Possibly I would not have set up this blog without it. Certainly I would not be writing this post.

Because you see, I realised that didn’t love my body. Not at all. Occasionally I liked how it looks, I welcomed the desire that my husband and boyfriend feel for it, occasionally I had a grudging acceptance of it. But primarily I resented it, even hated it.

I still don’t love it. Not yet. Nor can I get close to truly accepting it as “me”. But I have been thinking about that post and my attitude towards my body ever since, and I am making progress.

Where does this hatred of the body come from? This is an area where feminism and disability politics meet, and it matters.

As a woman living in a highly sexualised patriarchy, my culture tells me that the primary role of my body is to be attractive to men. For heterosexual (and bisexual) men to feel lust for it, and for gay men to find it inoffensive and aesthetically pleasing. Without those qualities, my opinion matters less, my value is negligible; I am invisible. With those qualities, I am still not listened to – just looked at. My gaze and my desires are irrelevant. If I fail to fancy a man who fancies me, I am a bitch who doesn’t know a nice guy when I see one. If I fancy a man who doesn’t fancy me, I am either ludicrous or threatening. You think I’m being too harsh? Look at the way that plain women are treated in tv comedy, even that with a generally liberal approach.

Of course, I’m being unfair. Very few men (or women) that I know believe in all that rubbish. But then, that’s largely because I pick my friends (and my partners!) quite carefully. (And walk away rapidly from anyone I’ve identified as an evopsych!) The messages that reinforce those belittling attitudes to women are present in the media every day. And I’ve internalised them. Of course I have. Very few of us haven’t.

That is bad enough. But in the popular media it’s not just about who is attractive to, say, the majority of men looking at her. That would be bad enough. But this is about something yet more ugly: it’s about beauty as an arbitrary but impossible ideal that women are nevertheless expected to try to conform to. Even Hollywood stars who spend worrying numbers of hours each day trying to fit into that very narrow box are photoshopped mercilessly by magazine editors before their image is regarded as acceptable. A woman can never be too thin, too clear-skinned, too young-looking, too pale, too passive, too bland. We are not supposed to display character, power, personality, wisdom, pain in our looks – the trappings of life, of life well-lived. If we do, that’s “ugly”, and heaven help us then.

(For more on this particular issue, I recommend Shakesville’s “Impossibly Beautiful” series, of which this is the latest post.)

I grew up bullied partly for my boyish appearance, regarded throughout my childhood and teenage years as having at best a “nice” face, and mocked cruelly for my lack of any prominent bumpiness in the chest area. Without that ideal of perfection hovering around me, perhaps I would not have suffered from this too much. As it was, it took me a long, long time to look at my big feet, my knobbly knees, my titchy nose, my miniscule upper lip and above all my flat chest with anything other than despair. Emerging as somewhat gender-queer and discovering a love of dragging up helped a lot with the last of those, but the rest still bothered me a great deal.

And that’s before you get to my disabilities. I have the condition known sometimes as Chronic Fatigue Syndrome, and sometimes as Myalgic Encephalymyelitis, and sometimes as Myalgic Encephalopathy, and sometimes as Chronic Fatigue and Immune Deficiency Syndrome. I have an anxiety disorder, which doesn’t show much in the appearance of my body in a photograph, but shows in my movements: in the tension I carry at all times, in the fidgeting, in the ease with which I am reduced to tears. I have an Inflammatory Bowel Disorder, of which the least said the better. I have Cervical Degenerative Disc Disease, which sounds worse than it is, but still means that I have a slight, variable scoliosis, a huge amount of back pain, and occasional twitching, tingling or numb fingers.

Oh, and I have depression, but only mildly, and it’s more a result of the other things than anything else. 😉

Those are mostly invisible conditions. Usually the first sign anyone meeting me will have of my disabilities will be all external: my walking stick, my wheelchair or possibly my taking several pills at 11pm. All things that make my life better rather than the disabilities themselves, in fact.

But the internal effects of breaking the laws of perfection are still internalised, just like the imperfections of the appearance of my body. As a disabled person, I am never going to be perfect in body or mind and this something I realise I have been struggling with for most of my adult life.

But here’s the other thing: as a disabled woman with two loving partners, strong desires, some talents and a mind of my own, I am a walking (or more often, recumbent…) subversion of what beauty should be.

And what I am finally learning, at the ripe old age of thirty-one, is that that ABSOLUTELY FUCKING ROCKS.

NO ONE has a “perfect” body. And thank goodness for that! Perfection is blandness, is conformity, is boring. Do we expect our friends, our partners to be perfect in order to love them? Of course not. What is glorious is endeavour, is kindness, is love, is wisdom, is experience. Is excellence. Is joy. Is generosity. Is spending our time and resources – whoever we are – on more interesting things than trying to look like a faked image in a magazine that is disrespectful to the very people we are supposed to be trying to emulate.

I am loath to talk too much about the “good points” about being disabled. One can get glib. One can end up talking like Cousin Helen from “What Katy Did”, and *boy* is that problematic.

But the fact that I cannot possibly have a perfect body is suddenly beginning to strike me as somewhat liberating. I don’t have to put up with that shit because I know it won’t work for me anyway.

And the pain, the fatigue, the mucky, yucky reality of four chronic conditions and a bonus fifth? They’re horrible. But they’re not the fault of my body or my brain. And they are part of who I am now. I would willingly get rid of all of my disabilities tomorrow if I could. But I don’t think now that I would choose to lose the effects they have had over the years on my character, on my face.

Plus sometimes the nerve-related stuff from the M.E. and the CDDD cause my left thumb to move on its own accord for minutes at a time. And that’s just funny. 😉

We are all imperfect, dear readers. All of us. The magazines lie to us. We are all imperfect, and that’s what we’re meant to be. 🙂

Fun, isn’t it? :-))

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