disability

The Problem Is Presumptuousness

I think it’s fair to say that I started blogging was still relatively in it’s infancy: in 2003, Youtube, Facebook and Twitter weren’t around yet, and social media was only just getting going. My parents suggested I start a blog pretty much as an academic exercise and as an outlet for my writing. I quickly found that it was a good way of letting the world know what I thought about various things, so I have kept it up ever since.

Fast-forward over twenty years however, and the online landscape has changed completely: rather than having our own blogs and websites, we all now converge onto social media platforms and hubs, where everyone competes for attention. Whereas I’ve never really been that bothered about how many hits I get here, as long as my friends and family keep reading my ramblings, on sites like Youtube every so-called influencer scrambles to attract views. This forces people to churn out more and more extreme and bizarre content. It has generated a playing field where people now spout all kinds of ludicrous nonsense simply so that people watch their videos. How else do you explain idiocy like ‘Flat Earth’?

Where this becomes a problem for me is with regard to disability. More and more people now seem to be using their disabilities as a basis to make content. On the face of it, of course, I have absolutely no problem with that: the word needs spreading about the many issues we disabled people face. Yet, to return to this entry from last week, what I object to is the way being disabled is seemingly being commodified and exploited, and used as a gimmick or USP with which to attract online attention. Obviously, people can become disabled for a vast range of reasons and at any stage in life; and they have every right to convey their experiences to the online world. The notion that such influencers shouldn’t be allowed to do so since they did not have to deal with many of the hardships or struggles other disabled people have is thus absurd.

The problem comes when they start speaking as if they know everything about disability, or are the first person to reach out and educate the wider world about disability. It is that presumptuousness which I find galling. They obviously do not share my experiences as a disabled man, yet have seemingly elected to speak for me. On Youtube I see such influencers speaking about all kinds of issues related to disability – things that I and others have written about many, many times, but they speak as if what they are saying is entirely new and revelatory.

To draw a parallel with the issue many so-called radical feminists have over whether trans women can really be perceived as women given they haven’t faced the lifelong misogyny and stereotyping many women go through, the issue wouldn’t be that the person has elected to identify as a woman, but has seemingly taken it upon herself to advocate for all woman as a sort of sociopolitical leader. Not only that, but they actively ignore the experiences and opinions of other women, having seemingly only started to identify as a woman for the sociopolitical cache. I have no doubt that many women would be perturbed by such a situation, no matter how radical they claim to be.

And Yet: No!

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.

I Will Not Be Drowned Out

I suppose, at the end of the day, I can see why they do it. I’m getting angrier and angrier about the apparent new wave of disability ‘influencer’, whose videos YouTube seems to be suggesting to me more and more. They are pretty much all female, talk clearly but use wheelchairs or powerchairs. The thing is, if they are indeed disabled, they have disabilities I’ve never come across before. Yet they seem to have now taken it upon themselves to advocate for the entire disabled community, as if it is suddenly up to them to tell the online world what life is like for disabled people?

Then again, wouldn’t you? Say you had a fairly tenuous link to a minority, but being a member of it not only gave you a right to things like welfare benefits and free public transport, but also the opportunity to become an online influencer in quite a niche but growing area. All you have to do was do your makeup and sit in your powerchair, making videos about wheelchair access to busses and accessible toilets. Never mind the fact that other members of that community have been trying to articulate precisely the same things for years, or that you only began identifying as a member of that group two or three years ago and clearly have very little actual experience of the issues you’re talking about; the fact that you are articulate, photogenic and have a decent cameraman means you can attract far more views than the people already in that area. Wouldn’t you try to emphasise your membership of that group and turn it into a living? After all, there are now countless influencers on YouTube, and they all need some kind of niche.

The thing is, they might not realise it, but in consciously choosing to identify as members of that community and presuming to speak on behalf of it, they drown out the voices which were already there. They presume to speak for people who would far rather speak for their selves. What such influencers are doing is patronising and insulting. That is why I am so upset about this phenomenon, and why I keep coming back to it on here. I am more than capable of telling the world about the barriers and hardships I face as a disabled man; I do not need some pretty bitch on YouTube talking over me!

Cheap Powerchairs, Silly Badges and Metaphorical Shoe Polish

The metaphorical shoe polish merchants must be doing a fucking roaring trade! I know I shouldn’t be so cynical, and I know I shouldn’t make assumptions about people, but the number of people now zooming around in powerchairs who didn’t previously use one has now really, really started to piss me off. Only a few years ago, I might have encountered, say, one fellow powerchair user a week on my trundles around the metropolis; yet I now come across several each day. It would be fine if the people using them had an obvious physical disability, but the wierd, antagonising thing is that they appear perfectly able.

This morning, for instance, I rolled up to a bus stop in Kidbrooke. It wasn’t the bus stop I usually use, but I’d decided to take a different route today. Coming up to the stop I noticed that there was already a guy in a powerchair there. The thing is, it was one of those cheap, new, flimsy kinds of chairs which I would probably break within ten minutes. The kind of chair which you can now buy in one of the fast multiplying high street mobility shops, but which anyone who has grown up using a powerchair for their day to day lives simply wouldn’t use. From the way he used his hands and arms he was obviously perfectly dexterous and didn’t have anything like muscular dystrophy, and the way he spoke to me to ask which bus I needed was perfectly clear. The fact he had badges with the LGBTQ flag, as well as one saying “I am autistic” on his bag strap, together with a streak of dyed pink florescent hair, made me suspect that he was one of the growing number of people who seem to claim membership of any minority they come across.

Again, I know it’s wrong to make assumptions about people, and he might well have had some hidden physical disability; but if I’m right about this guy, I hope it’s understandable why I find such sociocultural bandwagon jumping so provocative. More and more people seem to be identifying as disabled simply because it is politically fashionable. Yet being disabled is not cool. It is often hard and cruel: it is being sent to a special school and receiving only the most basic of educations; it is watching your disabled friends die one by one; it is getting mocked by kids in the street. The people I’m talking about will know nothing about such experiences, yet have consciously chosen to start identifying as disabled because just being straight, white and able-bodied is too privileged these days. Frankly, the notion that some people are claiming to be disabled when they previously would not have is as offensive as when white actors used to daub their faces with shoe polish in order to play black characters.

These days though, everyone seems to need to belong to one minority or another, so when people see guys like Lost Voice Guy or this bitch on YouTube (another prime example of this abject trend), they suddenly decide they have a disability too. If you’re not black, gay or transgender, being a cripple has become fashionable. I know I have gone over this before on here several times, and I’ve tried to look at it positively, but I can’t help finding this truly galling: it seems to make a mockery of disability and what those of us with actual disabilities go through. It reduces a huge part of who I am down to a mere cultural fad. It renders all my experiences as a disabled person, from my chair breaking down miles from home to being treated like an infant whenever I go into a new shop, into nothing more than a badge on a handbag strap.

People seem to be just hopping into cheap shitty chairs bought in high street shops and claiming to be disabled, if not because it has become culturally fashionable, then at least for more and more tenuous reasons. In doing so, those for whom being disabled is now apparently just a trendy lifestyle trample on and mock a large part of who I am. Would you not be appalled if such a big part of your identity was turned into something so frivolous as a sociopolitical fashion?

Walking Frames Are Not Wheelchairs

This has happened two or three times now: I have waited absolutely ages for a bus, but when it eventually arrives, the wheelchair space is occupied,  not by another wheelchair or even a pram, but by a person sitting on a walking frame. I’m sure we all know the type of frame I mean: the kind increasingly being used by podgy people, pushed forward but which you can sit on. Such devices are clearly not wheelchairs, but at least twice now have prevented me getting onto a bus, the driver having judged that the person with the walker takes priority.

 Frankly, I’m becoming increasingly annoyed about this. Not only has it meant that I have been unable to get where I needed, but I frankly also suspect that it is symptomatic of something more concerning. I might be overreacting once again, but in letting such people take up the bus wheelchair space, they are effectively being told that they are just as disabled as actual wheelchair users. Or rather, it allows them to be seen as disabled by those around them. In other words, it plays into the cultural intrusion trend that I am so concerned about. It would be no problem for them to get up and sit on an ordinary bus seat, but allowing them to stay in the wheelchair space and take priority over an actual wheelchair user plays directly into their probably unconscious desire to be perceived as disabled.

I am convinced that this is a real and growing issue, and one I feel increasingly insulted by. The fact that it has started to mean that I have been unable to get onto buses perhaps means I should try to do something about it. If anything irritates me, it is people claiming to be something that they demonstrably aren’t, especially if it’s for any form of sociocultural collateral. Usurping cultural identities seems to be a perverse, growing trend; and the way that these women on their walking frames seemed to grin at me when the bus driver allowed them to stay where they were, suggests to me that this is a clear manifestation of it.

Another Example of Cultural Intrusion

Just to go back to what I was talking about a few days ago about this apparent new sort of disabled person, yesterday I came across this short film from Eliza Rain. I’ve been puzzling over Rain for a while now: a manual wheelchair user, she says she became disabled / started identifying as disabled in the last two or three years, but refuses to state what her disability is. However, she now seems to be quite a prolific Youtuber, uploading a video every couple of weeks. As she puts it, “I make content all about living in London with a disability including travel advice, tourist advice and just general disability good things along with a bit of fashion and fun sprinkled in there.”

In the video I’ve linked to, though, she is talking about prams taking up the wheelchair space on busses. Of course, that is a problem I encounter quite frequently. The trouble is, in this very short video, Rain goes way, way over the top, to the point where she becomes antagonistic and misleading. That is to say, her representation of mums with prams as bolshy bitches refusing to move goes way too far. They may often be reluctant and sigh loudly, and it may sometimes take the intervention of the driver, but in my experience they have always followed the rules and moved their pram to allow me onto the bus. I have never encountered the overt argumentative refusal Rain tries to depict.

It therefore seems to me that she is attempting to over-dramatise things to get attention. If she actually used busses as a wheelchair user, she would know that the vast, vast majority of times it isn’t a problem, leading me to strongly suspect that this is an experience she does not in fact have. Once again, someone is attempting to take ownership of the experiences of others for their own gain. No mums blatantly refuse to move their prams as depicted here; nor have they ever been so argumentative and insulting. Yet the way she presents it, it seems like Rain is the victim of overt intolerance and persecution.

Thus what troubles me about online content like this is, as someone with a congenital physical disability who had to go through things like special school, people who know nothing about experiences like mine are increasingly taking it upon themselves to speak for all disabled people. Miss Rain says she only became disabled a year or so ago, yet she brands herself as ‘Disabled Eliza’ and seeks to inform the entire online world about what it is like to have a disability. Forgive me, but I can’t help feeling offended, as if my sociopolitical voice and experiences are being increasingly hijacked or stolen by people who become disabled, or claim they do, then exploit their disabilities to become self-styled online influencers, despite knowing almost nothing of what me and my friends went and continue to go through.

Having spent over twenty years attempting to chronicle my experiences and thoughts for the online world, I bet anyone would be just as upset by this as I am. I am not trying to suggest Rain or anyone else is ‘faking’ their disability, but rather seising upon their impairment for cultural and political gain, and in so doing effectively usurping voices like my own. Yet I don’t want anybody to speak on my behalf: Surely it is up to guys like me to relate to the world what having a disability is like, including using the wheelchair space on busses; not someone for whom having a disability is seemingly just a means to attract hits on Youtube.

Cultural Intruder Alert

When I got up and turned the news on earlier, I came across something which I found fairly problematic. At about quarter to eight, BBC Breakfast ran an interview with a man called Dave Steele, the self-named ‘Blind Poet’. Steele had apparently become blind (or, more accurately, partially sighted) ten or eleven years ago, and was now writing poetry and publishing books about his experiences. What irked me about this wasn’t so much the fact that he was articulating his experiences, which of course he had a right to do, but that he now seemed to be presuming to speak for all disabled people. That is to say, since he began to loose his sight, he had taken it upon himself to become some sort of disabled people’s champion, as if it was now up to him to inform the rest of the world what it is like to have a disability.

I know I shouldn’t get so worked up about this, but I am coming across it more and more these days: otherwise fairly socially privileged people who happen to get a relatively minor disability, but then framing being disabled as a core aspect of their identity and presuming they are a leader of the disabled community. From his description, it sounded like Steele’s eyesight was only marginally worse than mine; but whereas I just put my glasses on and get on with life, he opted to churn out books of poetry about it and appear on breakfast TV as some kind of disabled people’s champion. More to the point, as a (presumably) straight, white, otherwise able bodied man who only started to become disabled a decade or so ago, Steele will frankly know very little of what life is like for someone with a significant congenital disability, from being bussed away to special school, to being constantly spoken to like you’re a five year old, to being mocked and laughed at on an almost daily basis by schoolchildren.

Thus for people like him to adopt such sociocultural positions, even taking their disability as their pen name along with the prefix ‘the’, as though they are the only one, feels like an imposition or encroachment of the worst kind. I don’t want to sound melodramatic or over the top, but it is like a white person finding out they have black great-great-grandparents, and assuming that they can speak on behalf of all Afro-Caribbean people and claiming to have endured racial discrimination all their life. As I say, this cultural intrusion is something I’m coming across more and more these days, not just with respect to disability: the voices of the most marginalised people in society are increasingly being usurped and stolen by people who know nothing of their experience. Being straight, white and able-bodied is now no longer politically cool, so people will do anything to emphasise things that render them members of marginalised groups. The problem is, in doing so they usurp the voices and steel the often brutal experiences of the actual members of such groups.

An Afternoon In Westminster

It must be said that yesterday was quite an interesting day for me. I really don’t want to get too bogged down in the politics of it today, as to be honest I have quite complex, ambivalent feelings on the subject; but yesterday afternoon I thought I would pop up to Westminster to check out what was going on with regard to the disability rights/PIP protests. I got up there at about four, and it took me a while to find the protest itself: it wasn’t in Parliament Square as I’d expected, but in a smaller area just off it. Broadly speaking, I went up there mostly to observe rather than protest: while I certainly want to show solidarity to my fellow disabled people, the fact is the welfare budget has grown exponentially with far more people claiming disability-related benefits now than twenty or even ten years ago. That is surely unsustainable, and I think it’s a problem which needs to be dealt with, not just on an economic level but a social one too.

Even so, I wanted to go up there to try to get a better grip of the situation. The bottom line is the welfare state needs protecting. By the time I arrived I think the protest was winding down slightly, but there was still a good number of people there, with a wide range of disabilities. I got talking to a few, and as usual got complemented on my anti-Trump baseball cap. Pretty soon, though, people started to move: it seemed that they were actually going to go into the Houses of Parliament.

That would obviously be too interesting to miss, so of course I followed along and went in with them. I was quite surprised at how simple a process it was, as after a bit of queuing and bag checking, I found myself in the Palace of Westminster, being lead along the corridors to the main lobby. I found the place fascinating, with it’s ornate medieval decorations. Believe it or not I had never been in there before, and I was in awe.

However, it wasn’t long before I began to think about going home. It wasn’t just that it was getting late and I was getting hungry, but I was nervous that if a politician I recognised and disagreed with showed up, I would end up causing a scene. If, for example, Nigel Farage somehow showed up (extremely rare as his appearances in parliament actually are), there was a distinct possibility that I would start shouting or even try to attack the p’tahk. I would then probably be arrested, and the whole evening would have been spoiled. In all, then, I decided it was a good idea for me to head home, and watch how things played out on the evening news.

Real Cripples Don’t Need Lanyards

Yesterday morning, just as I was preparing to go out, I caught an interview with Jake from The Traitors on morning TV. As you may remember, Jake was a finalist in the Traitors who has comparatively mild Cerebral Palsy. However, his CP is so mild that he was able to keep it hidden throughout most of the show. As I said a few weeks ago when the program aired, something about that does not sit well with me: He was saying yesterday how CP is actually fairly common, and that a lot of people have it but it’s so mild that others might not realise. He then went on to explain how you could wear a special, flower-adorned lanyard to let people know you identify as disabled.

I’m sorry, but if you need to wear a lanyard to tell people you’re a cripple, you’re not a zarking cripple! Cerebral palsy, like all disabilities, should be obvious: if you have it, it effects your ability to walk, talk and move, albeit to varying degrees. In my case, people can instantly see that I have CP, which is why most of the time strangers treat me like a five year old. If someone’s CP is so mild enough they can hide it, I don’t see the point of them saying they have it in the first place. If they can walk, talk and move like anyone else can, to the point that nobody notices and it has no discernible impact on their lives, how are they disabled? Frankly, it’s like a white, middle class person claiming to be black because one of their great, great grandparents was black, then going on to claim to share all the oppression and racism black people suffer. It may be currently politically and socially fashionable to be seen as a member of a minority, but such cultural intrusion is becoming increasingly widespread and increasingly perverse.

Perhaps I shouldn’t be so negative and grumpy; ultimately it’s great to see a disabled guy getting so much media attention for once. Yet a voice in the back of my head keeps asking: did Jake go to special school? Did Jake get a second rate, half-arsed education because everyone assumed he’d never achieve anything? Did Jake have to watch his classmates die one by one? Can Jake only go into certain buildings because his wheelchair can’t go upstairs? Do people assume Jake has the mental ability of a doormat and treat him like a toddler? Does Jake experience a plethora of other hardships on a day to day basis, but has to just accept them as the way things are? Because if he doesn’t, he has no right to usurp the identities of those of us who do for his own gain.

TfL Lifts Should Only Be For Wheelchair Users

After what happened today I’m seriously considering starting a campaign to make all the lifts on the London transport network strictly for wheelchair users only, or at least confined to people who strictly need them. It had started out as a pretty normal day: after seeing it flagged up on the breakfast news, I thought I would go up to Central London to check out the Qatari state visit. I took the Jubilee Line up there, getting off at green park. Predictably, however, I got there too late for all the festivities, so there was nothing left for me to do but head back.

Just to make things a little more interesting, I thought I would trundle to Westminster, take the Jubilee Line to Bond Street and from there get the Elizabeth Line to Woolwich. For some reason it impresses me that you can now transfer between the Jubilee and Elizabeth Lines at Bond Street without leaving the station.

It was there, though, that the problems started. As any Londoner probably knows, Bond Street is quite a complex station, with its labyrinth of tunnels, escalators and lifts. To be honest I find it rather fascinating how the engineers managed to merge the old and new parts of the station. This afternoon, however, when I attempted to use one of the older lifts, I found it was going very slowly indeed. Just as I was starting to think that I should have just gone straight home, it finally arrived, and I wheeled into it along with five or six perfectly able bodied people. Everything seemed to be fine, until we got to the required floor, and the lifts doors wouldn’t open. No matter how many times the button was pushed, the doors refused to open.

People gradually began to panic. After a few minutes one guy pressed the emergency button and spoke to the operator. She assured us that a maintenance guy was on his way, but nonetheless I was there stuck in a lift, getting more and more furious with the lazy p’tahks who surrounded me. If such lifts were only used by those of us who need them, they would probably all work perfectly well.

Obviously things were eventually resolved, and after about quarter of an hour the lift began working again. Truth be told things were never in much doubt; but the fact remains that the lifts on the TfL network are getting older and older, and the more they are used by people who are perfectly able to use stairs or escalators, the more likely they are to break down. Obviously there will need to be some exceptions, such as mums pushing prams, but if you ask me all lifts should be strictly reserved for those of us with no alternative. As with my grievance concerning prams occupying the wheelchair space on busses, it just seems so arrogant and self-centred. It is now clearly becoming so problematic that I feel I have to do something about it.