Preface to the second edition: Shortly after I posted it, someone said to me this article looked angry and at the time I agreed but waved it off as a depiction of the reasonable emotion accompanying the blog post. Still, I think out of control anger is unhelpful and I trust the reviewer so couldn’t help second guessing myself so it’s been niggling away at me to address the situation. Now I’ve finally sat down to prune the venom and discovered actually I don’t think I need to. Other than removing a bit of surplus material I think any incendiary passages herein are tinged only with appropriate anger. While I am by and large not an angry person nowadays, it’s fair to say frustration and anger at being pigeon-holed and misunderstood throughout maybe the first two thirds of my life to date probably took years off my life. I know for certain my quality of life and ability to learn were significantly curtailed by the insecurity and anger directly created by others’ pernicious perception of me as a disabled person. And I’m only human. When I think back to ‘those days’, a ghost of the old anger does return. So I’ve left it in.
All disability is caused by a mind-toxin injected into a person’s brain, slowly causing their disability whether it’s congenital or acquired later.
I’ve avoided writing about disability since I was a child because, in theory, I have one. I have found that as someone perceived to be disabled, any disclosure risks my opinions, achievements and entire life story becoming obscured to others by the unclean yellow pall of disability; in other words, a false identity of being disabled is forcibly superimposed on my real one.
It’s a bit like going to an incompetent doctor with a cracked skull and a broken leg and the doctor asking, ‘So, do you work with computers? How much screen time do you have each day?’ You say, ‘I fell off my bicycle. The bone is sticking through the skin on my leg and I think my skull is fractured because my brain is leaking out of it.’ And the doctor says, ‘Ah, yes, I see, do you work with computers? It is possible to get muscular and joint pain and headaches from bad posture…’
In other words the reason I’ve avoided writing about disability is cowardice.
But my fear of being misjudged isn’t groundless. To elaborate, first here are some real life examples that have happened to me.
Missed train due to moron: I was at a train station about twenty minutes before my train was due to leave (yeah, I know, really living on the edge). I queued to ask someone at the gate what platform it would depart from and they said to ask at the information counter. Fifteen minutes left. I queued at the information counter. Five minutes left.
The information person told me the train times were on the departure board (well, people do say I look stupid I guess). I have learned to be judicious giving out personal information because it’s well, personal. But I judged this to be a situation in which disclosure would help cut to the chase. So I told the person I couldn’t see the departure board whereupon the music stopped playing, people stopped talking, poured drinks paused in midair and all there was left for the world to ignore was my, ‘oh Christ here we go again’ groan. Then the person at the information desk said, ‘scuse me, not being funny but do you need glasses?’ What to say? ‘Um, “you’re definitely not being funny, I hope you weren’t trying to be” maybe?’
I was in my late thirties. I could by then safely say I had a pretty good handle on what I did or didn’t need and what could and couldn’t be done to assist or change my visual ability. And crucially, I had about three minutes left before my train departed.
So I said, ‘I’mWearingContactLensesAndIt’sTheBestThatCanBeDoneButMyTrain’sAboutToGoCanYouPleaseTellMeWhatPlatformItGoesFrom!’
The gormless head swung ponderously towards the departure board but just before it got there it came back and… went away again and back and away and Oh…! He was shaking his head, not looking at the departure board at all! After he finished wobbling on his Mouvement des gilets jaunes centre of gravity, he looked at me through, apparently, a K-induced haze of glacial disbelief and eventually said, ‘You sure you don’t need glasses? I mean, can’t they do anything to…?’ I assured him that I didn’t and no they couldn’t do anything to (what? put laser beams in my eyes so I could vaporise him?) and then we laughingly established that I had missed my train and that yes I should have turned up with enough time to spare (living too close to the edge it turned out) and I think at the time I might also have been wondering whether I was actually at a carnival and where I could buy the bean bag to Down the Clown with though if that were true the bullet-proof glass was puzzling.
The matter wasn’t entirely resolved there either. The train wasn’t one that had a ‘usual platform’ so I had to wait for the next one and repeat the procedure, minus the person at the gate at least and this time now that the K-monster was suitably apprised of my personal circumstances, he obediently gave me the platform number and I could at least make it in time for the final ten minutes of my job interview (not really that last part but what if it was?).
And repeat hundreds of thousands of times; similar experiences on dates, at parties, in shops, bars, restaurants, airports and a noxious swarm of myriad other situations.
Rejection by reject-moron: I have in the past done online dating. This one time (not at band camp), I met up with someone who turned out to possess the incredible super-power of sucking the life out of the room with her voice. Her turn of phrase, inflection and conversation all conspired to simultaneously paralyse with negativity and boredom while making me need an excuse to leave; perhaps to spend a far lighter, happier and more fun time that evening having root canal surgery without anaesthetic. A little less so nowadays as I’m more sensibly bounded but I am a soft touch when it comes to rejecting people in any way so I probably stayed far longer than I should have. Eventually, she surfaced from her drone about how hard life was for just long enough to comment on how closely I had looked at the menu and ask whether there was anything wrong with my eyes.
I began with practised economy, ‘I’m quite short sighted.’ But when she asked if I needed glasses and after explaining that I already had contact lenses and well, this was as good as it was gonna get, she accelerated from evil-sucking-vortex-of-fatal-depression to supernova-raving mad in under a second. Not that her relentless monologue had afforded me much opportunity to talk about my job as a technical consultant, my ambition to write self help, fantasy and scifi, my interests in hiking, psychology and dabbling in music etc but as she ranted I quickly realised none of it would have mattered anyway.
What apparently mattered was that as a blind person (WTF? I was reading the menu wasn’t I?) I couldn’t get a job, I wouldn’t be able to support her and her son (the one she lied about not having in her online profile), when we got married and she stopped working…! Jesus Christ! It was our first date! Without splattering my personal finances all over the onlineness too much, I think at that time, the income from the not-job she had superimposed on my reality was about five times hers (just an estimate given her role and the company she worked for and the fact that out of all the people I knew, the highest income among them was still about half of the income she was sure I couldn’t be getting). Needless to say, date over very soon after and bullet well dodged.
Little segue here: Oh that’s just one idiot I hear you thinking. Most people wouldn’t do that. But it isn’t. We are all on some level that idiot. I remember the morning after a party in my teens when I stayed at a friend’s as did most of the rest of the attendees. Hungover, we were chattering inanely and someone – one of the women in our group – found an article in the paper about a reclusive blind guy in a small rural community who had been discovered using his benefit money to avail himself of the services provided by the local brothel. There were squeals of disgust and mutterings of outrage. The women empathised with the prostitutes having to do sex with a blind guy (I mean, eugh!!) and all were revolted that the state was subsidising this most vile of acts.
I lacked the wherewithal particularly that morning and generally at that age to question our assumptions in this situation but now I would ask those people to think about it from his point of view regardless of their views about prostitution. It’s likely that where he lived, nobody would be his friend or give him a job or even try to because of their discomfort with his blindness hence his reclusive behaviour; no human can beg for acceptance when it’s not forthcoming forever but that doesn’t stop us from always wanting it. The women – in that room at least, all perfectly nice and well intended young people – had given themselves away as being disgusted at the idea of intimate relations with a blind person so assuming the girls in his town felt the same way (oh and they would have…), it’s easy to see how his problem compounded and lead him along the precise path documented in national media.
Back on track now: Those are obvious and easily recognisable (very) common garden variety cases of out and out self-absorbed fear and ignorance giving rise to odious and onerous negative discrimination. Discrimination like this is inconvenient at the best of times and otherwise can’t fail to be a little annoying and hurtful to varying extents since if wrong stereo-typing and rejection didn’t hurt we wouldn’t be human.
As boring and boorish as it is, this type of in your face discrimination is adolescent-facial-bum-fluff-cute-and-funny compared to the insidiously metastasized tumour of positive charitable well meant ignorant discrimination with which society is riddled. Such well meant cancerous psycho-tissue is vomited out through word and gesture and rained down on disabled people and particularly disabled children with impunity. It looks like this.
Well meaning doctors told my well meaning parents who undoubtedly loved me that I wouldn’t be able to read or write and my parents duly handed me over to primary school with a casual, ‘just do what you can with it will you?’ If you’re paying attention you’ll have noticed my life’s literacy – something I derive vast pleasure and fulfilment from – hanging in the balance just now.
So, my academic fate spun on a dime and here it’s important to note, as a five-year-old, I wasn’t the one doing the spinning and it definitely wasn’t my dime. As a child, remember, things just are and stuff just happens to you. I was very lucky indeed. My first school teacher reckoned them-there doctors didn’t know nothin’ and went ahead and taught me to read and write.
All right so the boy can read and write ok, great. He can’t catch a ball though – which means whatever else he’s gonna be it won’t be a real man – so there’s only one thing for it, he’ll have to be some kind of science genius or something (I know, right? WTF?). it’s fair to say, academic things have always come easily to me as long as they weren’t taught at distance on a blackboard (which was only most things). But it’s impossible to say whether or not I had the makings of an academic gift if not for the ignorance and low expectations of my elders and teaching style of the day. The point is, my taking to early academic studies as okishly as I did, surprising them as it did, played into the stereotype. Their amazement at my being able to add one and one only a few weeks after everyone else in my class gave false evidence to their (ahem) blind assertion that I was some kind of genius. It might have been better in a way for me if I was actually dumber than average rather than just average.
Another little segue: You see this kind of thing all the time, for example in some of BBC Radio4’s coverage of the 2012 Paralympics. I can’t find it online without a lot of effort but I remember a panel of various intelligentsia were assembled on air to gush about the Paralympic competitors. I think their praise outstripped any given to the ‘normal’ Olympic games competitors. They praised the unprecedented level of dedication and marvelled at the perseverance it must have taken for the paras to get where they were. The subtext, to me, read more along the lines of, ‘I didn’t even think these people could get out of bed by themselves let alone drool and gurgle their way to a sports match. Heavens! What a thing! Well done them eh?’ Not that they weren’t praised but just this kind of praise was conspicuously absent from the Olympic events in which there seemed to be just winners and losers and their natural ability, dedication and perseverance were all taken as read.
Back on track: Did this mean I was the quintessential under-challenged smart kid? I have no idea but probably not. All said and done whatever my academic potential, my school grades were mediocre to the last and this mediocrity was never recognised because it was too inconvenient for the powers that were to see me as anything other than something they didn’t find weird and uncomfortable. Somehow even though my results kept being mediocre, adults just kept refusing to see what was right in front of them.
As a short-for-my-age squirt with big fuck-off milk-bottle-bottom glasses, unsurprisingly I came under fire for my odd appearance. In war-council with my elders and betters it was decided my newly invented genius was both the cause and the cure. Henceforth I was instructed to weaponize it against would-be attackers. which meant being told I was very smart and that when other kids teased me, it wasn’t because I looked weird or that teasing me about them got such a deliciously amusing angry and upset response or that it was hilarious to throw a ball at me and watch me flinch away from it or get mud all over my face when it hit me there. No. It can’t have been any of those things. Instead, it was because all those dumb kids (heaven only knows how some of them went on to become doctors, journalists and hedge-fund owners) were jealous because I was smarter than them.
Remember that children have a way of accepting what’s handed down to them from adults without question; mum and dad know everything. As an adult now it’s easy to see how ridiculous it all was. And as an adult reader you might be tempted to say, ‘well why didn’t you just…’ (do whatever). But try to keep in mind children are far less aware of what they’re going through than adults. I had no choice but to accept their ham-fisted advice so inside me was created an irreconcilable conflict. I knew my limitations and abilities from a very young age but what is a kid to do when omniscient adults give contra advice? Advice that no, you’ll never be able to do this or that (when you did it by yourself the other day when they weren’t there) and that you are very good at doing some other thing (which you know is beyond you). The attempted internal reconciliation of this impossible push and pull looks like a python that swallowed a giant stick insect then had a car carrier shoved its arse. A nonsensical confabulation with misplaced characteristics of all three.
I was smarter than everyone else except I wasn’t. Everyone wanted to be like me but I knew they didn’t. I wanted to be like everyone else except I shouldn’t because they were the dumb kids (all of them ???). And so on. And underneath it all a sinister and taboo understanding that all this fuss was being made in the first place because everyone was a bit uncomfortable with me being a bit sickly and broken and weird-looking and I knew it and they knew it. The lady was the size of an elephant and she walked into the room and said nothing and that was still too much protest.
It’s fair to say, I have spent half of my life climbing out of the psychological snake pit the misguided assumptions and vacuous (if well intended) assertions of parents, teachers, other children, siblings and society in general made during my developmental years. Even with the technology of the time – 1970s – life was only minimally more difficult for me than people with more eyesight and technology has only got better. in 2020, my tangible footprint of achievements in the world, lifestyle and inner sense of peace and ongoing fulfilment make a mockery of (m)any dire predictions acid-rained down on me and burned into my sensitive child’s psyche in the 1970s but nonetheless, it was these predictions and hardly the comparatively minor practical disadvantages I had, that seriously threatened my potential. My expectations for academic, vocational, social, personal and intimate lives were curtailed by the toxic injunctions placed on me as a child as a result of a minor physical abnormality.
Also, just because I have achieved self-assurance doesn’t mean the problem of discrimination is banished from my life even if now it’s just a niggle. The superimposition of the false identity ebbs and flows. Where the people close to me have stopped making wrong assumptions about my level of practical ability or ability to appreciate life, unless they have been previously ‘broken in’ by some disabled acquaintance or other in their lives, new acquaintances have not. They will always ask the same questions and in the worst cases, write me off as some sort of invalid in the same old ways. And then the burden of contra proof is back on me and that is very tiring.
The is the mind toxin I’m talking about. It doesn’t matter how able a child is or has the potential to be, if you’re heavy handed with labels, the most physically normal child in the world will wither if not die of the psychological poison that becomes part of their system when they are young.
The more astute among you may argue that I was just the victim of bad parenting and not my disability and they would be dead right, sort of. Within a reasonable range of physical abnormality (whatever TF that is), it’s fair to say a person’s ability to function in the world is determined by the capacity of their developmental environment to support their development no matter what that entails. Except that disability is not indistinguishable as a concept from more common parenting issues like a toddler who won’t eat their greens. Because people are creatures who want normal and feel bad when they don’t get it, society is going to be uncomfortable with what it perceives to be abnormal so to lump ‘commonly held to be negatively abnormal traits’ in with ‘just parenting’ is a bit simplistic. If your kid is coming home from school because they’re being bullied about their third arm or told their left vagina is the wrong shape, you can’t sweep it under the carpet. Yes disability is just a parenting and societal issue and it’s also unfortunately more than that.
Finally, while I think low self esteem and stunted personal development are the results of all flavours of oppression regardless of its source, disability is a bit different. I think while disability can sometimes be usefully lumped in with minority oppression, a key difference between disability and minority group or gender oppression is that society is theoretically well disposed towards us poor useless drooling weird disabled people and the same can’t be said for other minority or historically oppressed groups. But that’s a whole other story.