My parents’ logic is, as usual, difficult to argue with. A few days ago they came to visit, and we were talking about how I get so worked up about all these online influencers now purporting to be disabled. They pointed out that, given that such people don’t harm or effect me in any way, there is no point in getting so agitated. To a certain extent I can see what they mean – live and let live, and all that. After all, going on and on about such people just makes me seem spiteful and bitter.
And yet…And yet: no!
I think it’s fair to say that I had a pretty awesome childhood. It was stable, warm and loving. From around 1988, when I was five, until 2001, I was taken every weekday fourteen miles across Cheshire to a special school on the far side of Winsford. It was a small, quiet special school with 120 or so pupils, all with their own profound disabilities. Pupils’ ages ranged from between two to eighteen, and the school catered for a vast array of young people: all had physical disabilities, often quite profound, but many also had learning difficulties.
I was in a class of eight or so other students with just physical disabilities. Although students came in and out of my class for various reasons over the years, for the most part I grew up with them. We went through infancy and adolescence together, and became almost like siblings. Everyone had their own problems, yet somehow our disabilities never seemed to be an issue. There was Rich with Spina Bifida, who I remember crawling across the floor of the nursery, before he started using a wheelchair, dragging his paralysed legs behind him. Lee who had Muscular Dystrophy, who I remember having to go every morning to the physio department to spend an hour or so with his legs in strange inflatable stockings. Liam, who I think had SB too, and was passionate about Manchester United.
One day I will have to tell this story in full before it is forgotten completely; but for now let it be sufficient for me to just say this: I feel immensely proud and privileged to have known all my classmates and to have grown up with them. There are many criticisms of special schools and the segregated education system, but the fact remains that it is only due to the fact I went to such a school that I came know such people. They shaped who I am to the same degree – if not even more – than going to university did. Those guys had a fortitude and resilience which I have found nowhere else, save perhaps for in Lyn. Every day our class was full of laughter and banter (usually, I must admit, at my expense). They taught me to hold my head high: that even though your body might fail you and the horizon might look ominous, that is no reason not to walk on through the darkness with hope and happiness.
That, far more than anything else, is what going to such a school taught me. All my classmates were profoundly disabled and most used powerchairs, but we rarely if ever spoke about our disabilities. It simply was not an issue. There was no moaning or complaining; they just got on with their life. Perhaps those guys were less interested in academia than other students their age, but given most of their prognoses I think that is understandable. They knew what was to come, and we even lost three classmates over the years; yet self pity was unheard of. We just saw ourselves as regular children or teenagers.
Only in such places can you learn such lessons. Only when you grow up going to a special school do you get to meet such unique, courageous young people. They taught me what disability means, while not being in any way defined by their conditions. There were a vast array of students at school, all of them with highly complex, debilitating disabilities, but they all just saw their selves as kids.
I left school over twenty years ago, and over the last two decades most of my old classmates have passed away one by one. Of the eight of us, just three are left. That is a heart-wrenching, bleak thought; but just as I think my classmates knew what was to come and didn’t let it impede them, I must not now let such darkness impede me. Every new morning brings the potential for something incredible. Yet, both all around me in this great metropolis and online, I now come across people doing precisely the opposite. People now seem to be using their disabilities as their identities in a way which would have seemed absurd to my classmates. They seem to boast about being disabled, rather than seeing it as just something to put up with, just as your mates put up with theirs.
More to the point, apparently only having started to identify as disabled later in life (and seemingly on ever more tenuous grounds), the vast majority of such people will have never set foot in a special school: They will never have gone to a hydrotherapy session, chatted to their mates while they were being tugged and stretched in physio, or watched as two of their classmates cover their ears and burst into tears at being told a fire alarm practice was about to happen, the implant in their ears causing them so much agony. Such places would seem utterly alien, even repugnant, to these online influencers, yet they speak like experts informing the internet of what life is like for disabled people. Tell me: how can I let this stand? How can I let this world be intruded upon and usurped by people who know nothing of it? People who have never met guys like Rich, Lee, Liam or Lyn, and would probably want nothing to do with them if they did. People who trample on my friends’ fortitude and resilience, and turn disability into a gimmick with which to attract internet hits. I simply cannot let this be.
I realise I keep returning to this issue, and it’s probably irritating people. I should just let other people live their lives just as I live mine. Yet I can’t forget the guys I met back at school, or ignore how the people I now come across seem to almost mock them in their attention-seeking, pity-seeking outbursts. If that makes me come across as bitter and spiteful, so be it – surely that is a natural reaction to an increasingly bitter and spiteful world.
The Ill-Informed Ramblings of a Cripple 
I know this is an issues you come back to again and again, and with increasing bitterness it seems but as a non disabled person I am not going to comment on the rights and wrongs of your posts on this subject.
However the thing that does strike me, and is particularly ironic, is that many of your arguments are almost exactly the same as those made by people in the trans debate “you did not grow up as a female and experience the lifelong stereoyping/sexism and mysogeny so you cannot actually call yourself a female”
Substitute “disabled” for “female” and the rationale is almost exactly the same, but I know that you have similarly strong views about those you see as anti-trans and that is logically problematic and in some ways undermines your arguments, on both sides.
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With respect, I’m not sure I agree with you. Gender is (usually) a binary: people can be either male or female. When someone feels they were born in the wrong body or assigned the wrong gender at birth, they can choose to swap genders, A to B or B to A.
disability, on the other hand, means one lacks abilities people usually have; one is incapable of doing things other people can. It is manifestly disadvantageous. Thus, whereas swapping genders means transitioning between two equal states, becoming disabled implies a significant reduction in your ability to do things. Moreover, whereas you can become disabled for many reasons, most of the time disability is incurable: I’d love to be able to do things able-bodied people take for granted, but I know that isn’t going to happen.
What I find so upsetting is that people people now seem to want to be perceived as disabled for the political cache, without understanding the true disadvantages having a disability actually brings.
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You have totally misinterpreted what I said and TBH I don’t know if I realy want to engage any further. I am simply saying that to argue that newly disabled people haven’t gone through what you have and even to question if they are really disabled (which you have done on occasion) is, to me the same type of argument as saying that a trans woman isn’t really a woman in the real sense as she has not experienced growing up female and all that entails.
I am NOT arguing that the 2 are the same but just that the rationale is very similar…and i am well aware that you have very strong feelings against the anti-trans lobby and JK in particulatr. And I am not saying that I am a JK supporter either.
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I’m very sorry. Having reread your reply I clearly got the wrong end of the stick. TBH I see what you mean about the two boiling down to the same argument: ‘You haven’t experienced what we have, so how can you be one of us?’ Yet I still think it’s bizarre that there is now political cache in being perceived as disabled.
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Now I do find the whole “my disability is my identity and I’m so special and the only one who experiences this so listen to me as you wouldn’t have a clue otherwise” mentality incredibly annoying. As I mentioned on the other comment I’ve been diagnosed with hEDS after years of my body being “suboptimal” and three years of it breaking down more overtly, and whilst I must say I really dislike the concept of making your disability the main facet of your personality, I do understand to an extent why people with less visible disabilities are sometimes quite vocal.
I know you’ve said a few times that previously people wouldn’t have identified as disabled and that I think is because there was a much narrower understanding of what constituted disability. You would always have been unequivocally disabled. Myself? Well, to look at, no, absolutely not. I can walk so don’t experience access issues. I look normal so don’t experience jeering about my body. However, my life isn’t “normal” and so I’m in a grey zone where I look outwardly normal and so no one except my very closest friends and family who are aware of my health issues can understand why I can’t reliably function normally. I can’t pee, so I catheterise. I have ongoing kidney and bladder issues that mean some days I’m stuck in the toilet in tear inducing agony. My balance is bad, but because my gait is normal, I have no aid and I look normal, when I veer or stumble into the road or lose my balance standing still, I just look drunk or a bit silly. I have faecal in incontinence which is made more fun by the fact I open my bowels on average 6 times a day (4-11 is my norm), at totally unpredictable times- really makes leaving the house fun. My joints randomly pop out of place, when your ankle or knee does that and you’re on the stairs it’s pretty dicey! My ribs drop out of place when I twist to wipe myself in the toilet, which is agonising. My thumb and wrists doing this makes using my hands really painful. I have issues in almost all my joints ranging from the subluxations to tendinopathy to recurrent avulsion fractures to chronic strains. I have an issue with my arms, thoracic outlet where the nerves are compressed which causes constant numbness, pain and makes my arms and hands feel like they’ve climbed to the top of the empire state building when I’ve done one simple task. I have neuropathy in various areas which is like burning pins. Every step hurts, for a certain amount of time it’s bearable but the further I go it becomes agony, like hobble from one bit of kerb to sit on for a rest to the next. And my heart is messed up. Sitting it’s in the 40s, but standing it shoots up so fast that the rush of blood leaving my head often makes me faint. On bad days being upright at all is so difficult, standing trying to make the kids tea, heart is 180s and I’m breathless, dizzy and generally on the edge of passing out, you know the pulsing in your ears and the fullness in your head and the black vision? It’s that. That’s a few of the things anyway, I’m bored of listing and I’m sure you’re bored of reading!
I haven’t applied for PIP or a blue badge or anything because I feel that I don’t “count” as disabled. I have had to change jobs to work from home because of sh***ing myself constantly. It’s degrading and humiliating and limiting and messes with my mental health. But no one knows.
So am I able bodied? Or disabled? So the point of that long blurb is to basically say, sometimes with a disability like yours or that of your classmates, you don’t NEED to talk about. People can immediately see and understand that there are limitations in what you can do and that you will need adaptations and accommodations. Essentially you have never had to prove or “perform” your disability. When you have invisible conditions that prevent you functioning normally, and worse when they fluctuate, so one day you can do something then the next you can’t and you feel like people must be secretly doubting the veracity of something that causes you pain and limitation daily…. that’s hard in a different way to having a disability that makes you visibly different. So whilst it wouldn’t be for me to be really vocal about it, I do get why people with invisible disabilities sometimes feel the need to try and assert an ownership of some kind of identity. Because if we don’t fit with/ can’t keep up with people who can function normally or with only minor limitations, but we also don’t count as disabled then….. what’s that? You know? It’s a weird limboish grey zone and it’s hard and sort of invalidating, it’s a very very very different experience to yours. But it is hard, in a different way. Just as I can’t understand your lived experience and having a very visible disability that is the first thing people see and respond to, you can’t understand what it’s like to be limited by something invisible that you sort of feel people may not believe even though it has turned your life upside down and made it unrecognisable, y’know? And where new health stuff crops up all the time which is often poorly understood (the pathway to get diagnosed with slipping ribs which my GP had never heard of was fun!)… it’s hard work, but you look fine so you have to fight extra hard to get referrals and tests. Then just as one thing is diagnosed, your body decides it’s time for another bit to go wrong, but without a diagnosis you don’t know the trajectory of what to expect next, you don’t have one specialist…. it’s hard work. I’m not saying it’s as hard as what you experience, you absolutely have more limitations, but it’s difficult on a way you cant understand like I can’t understand your experience.
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