Being disabled is a bit horrible, really

Basically, I want to talk about internalised disablism, since it’s a thing I get a lot.

I’m also going to start this post with a very wry, very self aware “I can’t be disablist! Some of my best friends are disabled!”

It’s reached the point where, in some circles, complaining at all about being disabled is called internalised disablism; This line of logic suggests that the only reason that someone would want to climb a mountain or finish reading a long series of novels or go for a month without self-harming is because they, at heart, hate themself and have aligned their life goals with a society which views the achievements of disabled people as being either less important, or only important if they can be compared to the achievements of non-disabled people (Note – I’m saying disabled and non-disabled here because I want to include only people that’re both able-bodied and non-mentally-ill in the category of non-disabled, It’s just easier that way.) One of the things that’s routinely cited as an example of internalised disablism is not wholly embracing the Social Model of Disability.

Quick primer; The Social model says that a disabled person is not disadvantaged or suffering because of their body or mind, they are suffering or disadvantaged because of society’s attitude to their body or mind, and that the primary thing that we should do to prevent disabled people from suffering is to alter society to fit better. The Medical model says that the disabled person is suffering because of their body or mind, and that we should take steps to bring their body and mind into line with being ablebodied and sane/neurotypical (Note – I have used neurotypical here to include that Autists and Aspergics are broadly included in the medical model. I’m not on the Spectrum, so I shan’t presume to talk about how the Social and Medical models apply to Autusts or Aspergics. Anyone on the Spectrum who wants to make an addendum to the post or help me work out which resources are good and which are bad, feel free).

 

Note, in saying that I believe that the Medical model is valid, I’m not saying that society is doing its best. Society needs to get its fucking act together and make accessibility a priority, both in the physical sense of “If it’s a modern building, carve it up until you can get a wheelchair through it”, and the social sense of understanding that “we put in a wheelchair ramp” isn’t enough to make it accessible – There’s plenty of walking wounded, and it’s difficult to find places to socialise where Deaf or Blind people are automatically included, there’s often nowhere to let someone recover if they’re coming around from an injury or a seizure (Memorably, last year at the opera I ended up hiding out in the cellar stairs behind the bar, since there was nowhere else that I could stretch out my sorely-put-upon spine without being jostle or disturbed).

 

Anyway, I sometimes wonder if the people making these arguments have never done something purely for the pleasure of doing it – If they haven’t considered that maybe the view from the top of Blencathra is beautiful, or that stories are fascinating, or that not having bleeding infection risks on your body is better than having them.

When I say “I would like to have a sub-60 second 100m again”, I’m not saying “Disabled people are worse than non-disabled people” I’m saying “I enjoy the sensation of going fast in water, and it is natural to want to measure progress quantitatively”.

 

In a couple of discussions with friends, I’ve found that there seems to be a bit of a dividing line between who wholeheartedly disregard the Medical, and people who have problems with the Social (And, indeed, finding someone who is completely one or the other is rare anyway). The dividing line seems to be what I’d describe as “endemic suffering”. If you have one leg, but are sitting in a ski-lift with a cup of hot chocolate and an attractive Bavarian next to you, the only thing that will disable you is if there’s no way to get down without using two feet. If you’re sitting in that ski-lift, but instead of your leg being missing, it’s dangling a beartrap, you’re going to be disabled by the pain. Likewise, if you can’t even contemplate the lovely Bavarian calligrapher because your vision is slowly filling up with swarms of illusory but terrifying hornets, you’re going to be disabled by your own mind.

 

The weird middle-ground that I’ve found is physical fatigue; Some people with it prefer the Social model (“We shouldn’t lionise sportspeople so much, it perpetuates the disablism that anyone who doesn’t do physical exercise is somehow a bit morally suspect”) and some prefer the Medical (“Are there any stimulants that I can take so that I can at least get as far as the gym? I want to look like Stuart Broad.”) Indeed, the middle-ground in that seems to fall on how much the person in question enjoys or values sport for themselves, or what their primary experiences with sportspeople have been – If you were bullied by the entire rugby team, or went to a hockey-centric school whilst you were an avid bookworm, you’re likely to have a less positive view of sports in-general than you would if your experiences with sportspeople en masse have been positive or neutral.

 

(The first time that I was accused of being disablist towards myself was about sports, actually. And came from another disabled person, so it had plenty of weight. My love of the Paralympics and my belief that sport in schools, or more broadly the opportunity to exercise in school, was a good thing, was held up as being part of the culture that oppresses the disabled. I was told that, in participating in the glorification of competitive impulses and the perpetuation of the idea that sporting achievement was a good thing, I was adding to the harassment and othering suffered by disabled children. I was also reminded that the Paralympics sets impossible standards for disabled people to live up to, and that seeing one disabled person excel in their chosen discipline was tantamount to treating all disabled people as performing monkeys. So that, basically, all disabled people should opt out of practising any kind of sport, because it was perpetuating disablism to do so. It’s kind of stuck with me. Firstly because this was someone telling me that my only healthy-ish coping mechanism, hard exercise, was an outright evil however I practised it, and secondly because I couldn’t think of anything more disablist than saying “Sport is for the ableds”. On, and thirdly because the person telling me this had waited until I was exhausted and miserable and trapped on a long plane journey and in no mood to argue back to tell me. I understood the reasoning, and it was based in experience, and the person with the opinion was perfectly entitled to hold it, but it still made me feel like a terrible human being who didn’t deserve to live.)

 

Well, this has been quite a segue, but that brings us quite neatly back to the point; At that point, I felt like I was a Bad Cripple, and that’s one of the two axes on which I feel internal disablism.

 

The Bad Cripple Factors

 

-“It’s disablist, on TV, that when a disabled character dreams they’re usually not disabled.”

Well, it’s a cheap plot device, but I always feel guilty now that when I dream, I’m not in a wheelchair and wracked with pain, I’m usually walking comfortably through a huge city with watercourses everywhere that I can dive into and swim without fear or fatigue.

 

-“It’s disablist to present a mobility exoskeleton as a desirable thing, walking isn’t the be-all and end-all”

I would be first in the queue for an exoskeleton. I would cut my own legs off with a rusty hacksaw if it meant I could have a robot body that was better than my own.

 

-“It’s disablist to present the non-mentally-ill perspective as the objective/correct one, and the mentally ill as the subjective/wrong one”

And yet, if I think that someone has said something incredibly offensive to me, I’ll always ask a more sane friend “Did he mean what I think he meant?” and the answer will often be “No, but I can see why your depression might tell you that he did”. I feel terrible that I sometimes need a reality-anchor in the form of my friends, but without it I would probably have moved to Slovakia and bought a ferret farm in a fit of mania by now. Or, more seriously, I would have cut ties with everyone I know, defaulted on my mortgage, and fled because I thought that everyone was plotting against me. Or I’d have killed myself, when faced with an insoluble problem like how to say that I didn’t want to go to a meeting.

 

-“It’s disablist to want to not be disabled”

And lo, I can feel bad for saying things like “I wish I wasn’t in pain” or “I wish I could climb that” or “I wish I could finish reading this book without needing the longer paragraphs read to me”. Being in pain is bad. Being unable to walk or swim or climb as well as I want to is bad – And that’s not unique to my disability, I’m pretty sure that everyone with a competitive streak wishes they were stronger and faster, and everyone with an appreciation for the countryside wishes they could spend more time comfortably out in it. And being in pain, jesus christ, being in pain is bad. Waking up, every day, knowing that I have to make the choice between too sore to move or too stoned to think? That’s bad.

 

-“Keeping fit has no bearing on disability, you can be a couch potato or a world-class athlete and still end up disabled”

And yet, the only thing that mitigates the symptoms of EDS is regular, muscle-building, weight-reducing (when people have weight to lose) exercise. A lower body mass puts less strain on the already-knackered joints, and greater muscle mass allows finer control of the limbs, and lessens the likelihood of becoming so exhausted from simple activities that injuries happen. It doesn’t apply to all disabilities – probably not even to most – but it applies to mine.

 

And then we combine those with the other side of internal disablism; The I Am Not Worthy.

 

The I Am Not Worthy Factors

 

-“Why would anyone want to spend time with me? I have nothing interesting to say.”

-“Why would anyone ever find me attractive? I’m underweight, I smell of opium and ketones and I bathe twice a month.”

-Why would anyone ever want to share a meal with me? I pick at the food then usually get stomach cramps and give up.”

-“Why would anyone want to go on day trips with me? I always hurt myself and we have to go home early.”

-“Why would anyone want to be my partner? Their lives would be so much easier with someone normal.”

-“Why would anyone want to fuck me? It’d be so much easier with someone less frail.”

-“Why would anyone want to live with me? I create endless mess and fill the house with mobility kit and drugs.”

-“Why would anyone want to be my friend? I have crises over nothing and alternate between misery, mania, and suicidality.”

-“Why would anyone pick me for anything, over literally any other human being? I’m not as good as other people.”

 

To which there is just one answer;

 

-“And yet, they do.”

 

…I’m working on it. I don’t think that I can be the only person who feels like this; Like I’m not good enough at being proud to be disabled to fit in with other disabled people, but like I’m not good enough at being a normal, functioning member of society to fit in with the abled people.

 

But mostly, probably to the chagrin of campaigners for wholehearted uptake of the Social model, I’m working on it by picking my battles. I complain incessantly to First Buses, since their drivers (Other than a few, and whenever I see them on the bus I am cheered) as a whole are careless and disablist and don’t care if they accidentally fling a passenger down the length of the bus, refuse to help with wheelchair access when the wheelchair space is blocked (And don’t start me off on the recent legal action which determined that wheelchair users have no right to use the wheelchair space), and don’t wait at stops for long enough for passengers with mobility difficulties to exit the bus. I speak up to defend the disabled in conversation, and am frankly ashamed of how many of my friends still casually use invocations of mental illness as a shorthand for dangerous/ignorant/unpredictable, and how many of them really like the idea of adding “And then they were crippled/insane” as things to make a character more Dark And Edgy. I write to local businesses to get them to improve their accessibility, and they often do. As a balance to this, I try my hardest to keep fit, since I prefer to be able to walk and keep my mind my own. I don’t expect people to take my hallucinations seriously, or to listen to me when I’m obviously talking nonsense. I don’t denigrate the worth of activities which I can’t do.

 

There’s probably something much more intelligent and much less longwinded to say about this. Maybe later.

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3 thoughts on “Being disabled is a bit horrible, really

  1. I am torn.
    I know people get pleasure from competing. I also know that for me and others like me competitive sport ruined our school lives.
    I reject totally the notion that everyone should do competitive sport but support the notion that everyone who wants to should be able to.
    my personal view now has moved on from what i would like to do to Mr Smith the PE teacher if I ever caught him to the idea that competitive sport should be solely extra curricular or optional in school. Mandatory pe lessons should teach fitness not sport with electives for those who wish to compete. We want fit kids dont we?

    Well thats my pet peeve peeved.

    Aside from that…the social model has many holes. I cannot get my head around accepting a disability. Thats distinct from living with it. I honestly think that when i accept I have eds I will die. The day I always accept the offer to carry my drink to the table in Costa…the day I always take the offered seat…the day I wake mrsinky to comfort a crying foal rather than try to crawl there myself. Thats when I will have accepted eds. And died.

    • Exactly – I should probably draw a distinction between “Sport” of the “Charging up and down a hockey field whilst being howled at by a sadist in a tracksuit” and just “Having the opportunity to stretch ones legs in the fresh air during the school day”. Never being much of a team player (Good at archery, good at aikido, terrifying at swimming… Frankly pointless at hockey or netball since they involved painful impact to the spine/hips/knees) I suffered at the claws of my PE teacher too.

      The more I think about it, the way my sixth form handled it worked really well – We had the traditional Wednesday Afternoon, where you had three hours to spend doing *something productive*; Could be a sport, could be a long walk, could be reading to kids at a primary school.

      Definitely agreed. Acceptance is death. If I let the EDS dictate everything, rather than making the choice to push hard one day and suffer the next, I’ll never do anything again for fear of pain. In my case… EDS has gained ground. I take the seat, I hire a cleaner, I let the porters push my wheelchair. But it’s all just saving up the energy bank so that I can try to work beyond the 3km/hr freestyle, fix the problems in my racing turns, rebuild my rotator cuffs until I can swim butterfly again, etc.

      It’s all so personal, everyone must have their own method. I only get resentful when people try to impose their method on me, and yet it seems to be really fashionable to do so at the moment.

      • My pet hate is being told i am brave or inspiring because disability.
        I am not.
        I am brave in defence of others not in the face of eds. I have inspired people, I am told , by my skill in teaching. But thats not because eds.
        calling me brave for doing my best with a disease is patronising and insulting. We dont call Ben Cohen brave for being muscly, handsome and hung like a right whale do we? thats also an accident of birth.
        And now I have Jethro Tull’ s Wind Up going through my head.

        I don’t believe you
        You’ve got the whole damned thing all wrong
        He’s not the kind you have to wind up on Sunday….

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