mental-health

Another Westfield

I just got back from Westfield Shopping centre. Only today, it wasn’t the Westfield I usually go to up in Stratford. I can get to that one quite easily, and as huge and opulent as it may still be, I’m getting bored of it. I decided a while ago that I need to get out of East London a bit more, so today I decided to head to Shepherd’s Bush. I had  had a glimpse of it a few days ago, having been on one of my canalside trundles; but today I decided to go back and check it out properly.

Getting there was somewhat novel in itself: the Jubilee line to Westminster, the District to Hammersmith, then a short walk from there rather then taking the circle line a single stop. I’m becoming more and more comfortable navigating london’s transport system and switching between lines, although some of the gaps between the train and platforms were slightly wider than I’d have liked. Even so, my journey was relatively swift and problem free.

I didn’t stay at the actual shopping centre that long, and decided to start making my way home after just a short cruise around it’s opulent shops. I realise how strange that might seem, having gone to so much trouble to get there. But that isn’t the point. The reason I have adventures like today’s is to sort of demonstrate to myself that I can get to places. It’s about establishing routes. Now I know I can get there though, and that this ‘other’ Westfield is just as big and impressive as the one in Stratford, I think I have a potential new rendezvous point for meeting mum and dad. Moreover, getting back turned out to be even easier than getting there, as I found a Superloop running directly to Ealing Broadway, where I could just hop onto the Elizabeth Line.

London is definitely feeling smaller and smaller. I’m not sure how many people will be interested in all this stuff about me going places and which trains I ride, but in a way feel compelled to record it. This city once seemed like a huge, inaccessible labyrinth; yet it is becoming increasingly familiar, homely and welcoming. I’m feeling more and more comfortable with getting around and exploring it, and as I do so it becomes ever more fascinating.

Social Media and Emotional Regulation Questions

I’m probably just once again using my weblog to think things through, but I was just watching BBC Breakfast news. They had an item on the possible banning of social media for under 16s. Now, I’m very much on the fence on that issue as I can definitely see advantages and disadvantages to such a ban; but during the item, one academic stated that there was a link between the use of social media and ’emotional regulation’. That really caught my ear: we know that people with autism have trouble regulating their emotions, and it’s one of the defining features of the condition. Could there be some kind of connection between social media use and the dramatic rise in ASD we’re currently seeing?

I’m pretty certain I won’t be the first person to wonder about such a link. I’m just thinking openly here, before doing any googling or research (yes yes Dad). But you have to wonder what such a connection could mean, how it might be objectively established, how we might explore the way social media use effects how we interact with society, and what if anything could be done about it.

Interestingly, later in the Breakfast programme, they also had an item about a man with severe autism, and the techniques being used to cut his hair. He had what I’d recognise as autism from my school days, was non-verbal and clearly couldn’t really interact with the world as others do. To be honest I think there is still a real, clear distinction between this manifestation of autism and the one now being ascribed to so many more young people. They may be on the same vague spectrum, but I don’t see how they could relate. The boy with autism had apparently been diagnosed ten years ago, when he was very young; yet these social media-using kids will be in their teens and will still be highly capable of interacting with other people on some level. This situation is obviously very complicated and certainly worth looking into.

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.

Sunday Morning Fury

I honestly think I ought to just stay away from politics – it really isn’t good for me. I was just watching Sunday with Laura Kuenssberg, and probably nearly gave myself a heart attack. She was interviewing Kemi Badenoch, and she was lying so much and being so arrogant that I simply lost it: I started yelling at the screen and everything. How she or any Tory can have the sheer gall to lecture anyone about economics, or to accuse anyone of lying or deception, put them far beyond redemption. Through their black female puppet*, this set of white male aristocrats speak as if they have done nothing wrong, or only they can be trusted to run the country when they are the runs who ruined it. On Wednesday she stood in Parliament hurling insults at the chancellor like a playground bully, making utterly baseless accusations and even calling for her resignation, but this morning Badenoch acted as if she had nothing to answer for.

The spectacle was too perverse for me to handle; in fact it made me so furious that it became rather frightening. I was shouting so loudly that Dom came to ask what the problem was. In such moments I seem to loose all control: all I feel is anger and rage. I can feel my heart thumping in my chest, and all I want to do is annihilate the object of my fury. Such feelings only last a few minutes – even seconds – but they are petrifying. I’ve known they are connected to my CP for some time now, but the concerning thing is, everyone else seems to be growing just as furious: such anger seems to be becoming widespread, especially when it comes to politics. It’s as if we have forgotten how to live together and see each other as mortal enemies. Yet whereas I usually calm myself down by tapping out a blog entry and/or going for a trundle in my powerchair, more widely, such anger seems to be being funnelled into something far darker and more dangerous.

*It should be blatantly obvious that the Tories are just using Badenoch to give them selves the veneer of multiculturalism and inclusivity, while still being a party whose very raison d’etre is essentially to conserve the sociopolitical dominance of wealthy white men. It’s a scam every bit as perverse and insulting as the one I noted Reform pulling a few weeks ago.

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?

Hospitals, Gratitude and Blog Entries

About three weeks ago I began to feel very, very unwell. I don’t know what was wrong with me: it certainly wasn’t a normal sneezing and coughing cold. Physically I was pretty much fine, but I felt dizzy, disoriented and not myself at all.  It lasted a couple of days and I started to get slightly concerned, so I decided to head to my local hospital to check whether anything was actually the matter with me.

It turned out that there was nothing wrong with me, and I was perfectly fine: everything checked out and I was back to normal a couple of days later. I think I ought to record, however, that my treatment at the hospital was absolutely astounding. For some reason, I was put at the front of the queue and made a priority. I was thoroughly checked over, my blood pressure taken and everything. That was quite a relief in itself, and of course it is only because we have the NHS that I could receive such outstanding treatment.

I am now, I’m glad to say, feeling perfectly normal. For the last couple of days though, the thought has been nagging at me that I should go back to the hospital and say thank you. It feels like the right thing to do, given that I received such outstanding treatment. The thing is, I don’t think I can just roll into the hospital and ask to see someone: hospitals are extremely busy places after all, with many people in need of critical help. I wouldn’t want to distract anyone from their jobs.

Thus the best thing I could do, I decided, is to write this blog entry. It was only a minor episode, and I had previously thought I would just keep it to myself. Yet if through recording what happened here I can express my deep seated gratitude for my treatment, then I really hope that the staff at the Queen Elizabeth Hospital in Woolwich know how thankful I am for their help. Above all, I find it profoundly reassuring to know that I can roll into a hospital like that and receive such help when I need it. We are all very lucky indeed to have such support.

Scum On Eltham High Street

I got angrier today than I remember being in a long, long time. It started well enough: after breakfast I decided I better get a bit more cash, so I set off for my building society up in Eltham. On my way there, though, I saw that a group of twits had set up a table and were campaigning for the Reform Party on Eltham High Street. Naturally this got my blood pumping instantly, so once I had my cash I returned. Now, I know how important it is to respect other people’s points of view, but as far as I am concerned what the people standing there today represented was nothing but the return of fascism, and it was therefore my duty to make my opposition known to them. The fact that they were selling poppies in order to appear patriotic, when the truth is they essentially represent everything which so many people died in both world wars fighting against, made me even more furious.

To simplify a long string of events, I basically spent the next two hours sitting on the opposite side of the road from the scumbags. There was nothing I could do to get them to move on, as much as I wanted to do so. London is an open, diverse, multicultural world city; the right-wing nationalist politics those imbeciles were forcing onto the public have no place here. To make matters even worse, at one point a guy with fairly severe disabilities using a powerchair joined them, the disgraces to human civilisation obviously having fooled him into siding with them in a perverse effort to appear open and tolerant.

In the end, of course, there was nothing I could do but roll on my way. As a literate, educated man I know what Reform are; I understand the politics they represent, and what will happen if we let them go uncontested. We cannot allow such idiots to drag us back into some nationalist, draconian, reactionary age. Encountering their unenlightened minions on Eltham High Street earlier today was a sickening sight. If it happens again I certainly won’t ignore them.

Ignorance and Hate

Today I think I ought to go back to something I wrote in this entry a couple of days ago. My dad called me up on it when we were speaking the day after, and as usual he had a good point: I shouldn’t have dismissed everyone who attended the protest on Saturday as morons or idiots. Many would have understood full well what they were doing – which, if anything, makes things even more frightening. At the same time, it’s frankly difficult for me not to suspect that most of the people I encountered on Saturday would have had a considerably lower education than those who watched it aghast from the sidelines.

Perhaps I should try to qualify that. I grew up going to a special school, and have done voluntary work at one. Over the years I have met numerous people with learning difficulties, often quite profound, as well as people with severe autism. Obviously, there is no correlation between such people and the people I encountered on Saturday. To equate one group with the other is as erroneous as it is lazy. People with LD can be as kind, gentle and open-minded as anyone else; what we witnessed on the streets of central London on Saturday boiled down to pure thuggery and hooliganism born of anger. Nonetheless, while I do not want to make baseless assumptions or lean too heavily on stereotypes, it was quite clear simply from the vocabulary and sentence structures I was hearing those around me using, as well as the content of the conversations I overheard, that these were people that the education system had to a large extent bypassed.

Yet that leaves an obvious question: how can we account for such behaviour and the wider feeling of discontent we’re currently seeing, not just here but in America? It seems to be being channeled more and more into a kind of vehement nationalism, with people being drawn towards simplistic ‘us and them’ mentalities. People seem to be feeling disenfranchised and left behind by an increasingly articulate, educated, technologically-astute society: perhaps those left by the wayside amid the ‘dash for degrees’ fifteen or twenty years ago now feel a need to strike back at those they see as ‘elites’. They do not have the vocabulary – the cultural capital – to participate in public discourse at the same level as those they see around them, and channel such alienation into a heady mixture of fury and pride. At the same time, I also think their frustrations are being deliberately mischannelled by social leaders such as Farage or Yaxley-Lennon who use such anger for their own political gain. Such charlatans have not only pinned the blame for people’s woes on members of other socioeconomic minorities, but have now managed to make it look like being openly discriminatory towards such minorities is an act of strength, independence and courage. We have seen such usurpation countless times throughout history, and it has seldom ended well.

Of course I am only speculating here. I would like to go much deeper into these issues though, into what is causing the social unrest and stratification we are currently witnessing. It is far too simplistic to dismiss those currently sliding to the right, shouting their heads off about immigrants as just stupid or misguided. Yet to ignore them is equally dangerous. They are clearly extremely angry, but their anger is being misdirected into something abhorrent. History teaches us that if we don’t do something about the root causes of such feelings soon, something utterly sickening can only follow.

A Dark Door

To be honest I can’t decide what I think about yesterday and the assisted dying debate. I thought briefly about going up to Westminster to check out the campaigners, but decided not to as it was too hot and I didn’t want to get worked up. It’s a complex, highly emotional issue: like many disabled people, I worry that legalising assisted suicide opens the door to many dark consequences, such as people being coerced into ending their lives too early. On the other hand, if people have a right to get help to do things they want to do, surely that includes committing suicide: logically we can’t only give people help if we approve of what they are doing.

It’s a dark, thorny issue. I love life: I love living, having fun, going travelling, doing all kinds of crazy things. The idea of ending that, throwing it all away, is noxious to me, particularly after having lost so many good friends, including Lyn, far, far too early. I know full well how dark life can get, but that also teaches me to relish it, and live it as fully and enthusiastically as possible. The notion that someone would choose to end their lives when the world is full of so much potential frankly sickens me. Thus I must admit that part of me was appalled by the sight of the ‘Dignity in Dying’ campaigners cheering on Parliament Square yesterday afternoon – why cheer for death when you should be putting your energy into helping people to live?

But again, this is something I don’t want to get too worked up about. It’s a fraught, emotional issue which people on both sides feel extremely strongly about. I might pop up to Westminster later, just to check what’s going on; then again, it might be a better idea just to go watch the cricket.

But You Don’t

Do you know what Muscular Dystrophy is, you stupid bitch? Do you know what MD does to young boys, slowly sapping their strength away? Do you know what it feels like to go in to school, day after day, and have to watch your classmates, boys you grew up with, fading away? Do you know what it’s like to wonder which of your friends will die next, until there are only two of you left by the time you’ve reached forty? Boys who all deserved long, happy lives, but the sight of whose grieving, distraught parents is now seared into your memory like molten iron pressed into flesh. I don’t think you do, because if you did, you wouldn’t have stood up on that bus back from Bexleyheath earlier and started to hand out leaflets about a god which can’t possibly exist. You wouldn’t have started to talk shit about how everyone should love Jesus, trying to indoctrinate your fellow passengers into believing in a god who, if he actually existed, did nothing to prevent the suffering of so many of your friends. A god you demand everyone should love, while being nothing but an entity of contempt, rage and malice.

You would understand why I reacted with such anger, disgust and horror, demanding that you either shut the fuck up or got off the bus, while you arrogantly went on spouting bullshit. You would understand why I for a moment wanted with every fibre of my being to put my hand out and break your neck for thinking you had a right to force everyone on the bus to believe the baseless nonsense you do, as if you were the purveyor of all knowledge. You would realise why I find you an arrogant, vile, brainwashed bitch, deserving nothing but my white hot fury. But you don’t, so in the end you went on your way thinking you have a right to come onto busses and try to spread your bullshit.

Trouble With Teenagers

I’m afraid to say that I’m really, really starting to dislike kids. By kids I mean teenagers, aged between about thirteen and seventeen. It might just be my perspective, but they all seem to have developed an arrogant, cocksure, undeserved worldliness that is completely misplaced: they are still essentially children, but they seem to think they’re adults. For instance, I was in Starbucks in Kidbrooke earlier enjoying a  cuppaccino, when three youngsters from the nearby school came and sat at the table next to me. At first I thought little of it, but when they began to talk about American history I began to become interested. They were discussing the origins of Thanksgiving, so I thought I would intercede by pointing out that it was just part of the American self-justifying, self-aggandising mythos.

As usual I tapped what I wanted to say into my Ipad and then tried to play it to them. However, to my horror and frustration, they ignored me completely, acting as if I didn’t exist. I tried again and got the same response. Now, I know I was a stranger and that perhaps I should have just let them be, but I find that introducing myself in this way is a good way of helping young people get to know people like myself, and showing them that, at the end of the day, we’re just like anyone else. The way they ignored me, however, struck me as downright rude: they seemed to have a sneering, contemptuous attitude, as if they thought themselves better than me and everyone else in the room. The least they could have done was note my presence and show me some respect.

Perhaps I’m just getting old; perhaps I’m just turning into a cranky old man who thinks young people should know how to behave. Yet the attitude those kids seemed to have this morning stunned me, and it seems to be becoming more and more widespread. I was just trying to introduce myself, but all I got in return was arrogance.

Absence Anxiety

I have had a bit of a strange day so far. Physically, it has actually been quite good: a nice, fresh, jam-filled breakfast followed by an interesting trundle to Lewisham. However, it was also one of those days when I have felt rather edgy about my absences. That is to say, throughout the morning I repeatedly thought I could feel one was about to happen, only to be fine. I’m not sure whether I imagine such feelings or not, but it makes me very nervous. I don’t suppose many other people will know what it feels like to suddenly get a dreadful sensation that you might to be about to loose all your sense of spatial awareness, and then come to around a minute later with a gap in your memory. My biggest fear is that something might happen during that gap, and I’d be totally unable to control or remember it. It’s an extremely disconcerting, unpleasant feeling: at the same time, I dread my absences, but when I feel like I did earlier I sort of want it to happen, simply so it can be over and I can get on with my day without worrying that I could suddenly blank out. This morning, however, I was fine in the end; the brief spasms of panic died away and I didn’t have an absence.

I used to keep such things to myself; I used to think it was better not to make a fuss and get on with life. After all, as I touched upon here, very few other people have such experiences so nobody would know what I was talking about; and there’s nothing anyone can do to stop them anyway. Recently, however, there seems to be a growing trend in open about such things, especially online. More and more people are opening up about their disabilities and impairments, however minor. In the grand scheme of things, that’s probably very healthy. Why, then, shouldn’t I join them? If everyone else is now being so open, why keep my anxiety about my absences hidden? As I say, it’s a very unpleasant feeling; but it’s one I’ve always experienced every few weeks or so. Writing this won’t make such feelings go away, but nonetheless it feels good to be more open.

Hoarding Is Normal

I was watching breakfast tv earlier, and there was an item on hoarding being recognised as a psychological disorder. I must admit it caught my interest for several reading: my initial reaction was to indignantly wonder how something so seemingly trivial could be seen in the same general sphere as more significant medical problems and disabilities. But thinking about it a bit more deeply, post my second coffee, it occurred to me that the issue is rather more complex.

The question is, what is a ‘condition’, be it medical or psychological? Probably the simplest, broadest answer I can think of is that it is a list of symptoms which significantly impact someone’s quality of life or ability to live. My cerebral palsy, for example, effects my ability to move, walk and talk. The question therefore arises: how could hoarding effect your quality of life to a similarly significant degree?

I think it’s fair to say that we all collect or hoard things we like. I have quite a large collection of books and DVDs: I hardly watch or read any of them these days, but as I wrote here, they are nonetheless significant to me. Does that therefore qualify me as a hoarder; and might it mean that I have a psychological condition?

I don’t think that it does, particularly given that all my books and films are neatly filed away on my bookshelf. If my books and DVDs were strewn all over my flat to the point that I could barely move, it would be a different question. That obviously gives rise to questions about cut-off points, any of which will inevitably be arbitrary and subjective. Although I can see how excessive hoarding may cause issues, especially if people are living in small houses or flats, if it does not prevent someone from living a productive, happy life, I think that pathologising such behaviour might do more harm than good.

Most obviously perhaps, would it not just serve to reinforce such behaviour? As soon as you give anyone a label or identity of any kind, they unconsciously internalise that identity; they start to emphasise the traits which mark them out as a member of that group, often without realising it. It becomes part of their identity, and ultimately creates yet another artificial sub-category with which society can fragment itself even more. Thus as soon as you label someone as a hoarder they will start to identify as a hoarder and start to hoard even more.

Moreover, in pathologising a fairly common, rather innocuous set of behaviours, in defining them as a medical condition, I feel we are making things too complicated. Why must everything be categorised and diagnosed? While medical diagnosises sometimes help people access the support they need, in this case, if their behaviour isn’t harming them, why not just let people do what they are to? Would it not be wiser to just accept people as they are, without labelling them as strange, abnormal or impaired?

More About The Spectrum

If I can pick up on what I was discussing here a couple of weeks ago about how I feel that autism is becoming increasingly politicised and problematic, I think I have a good example. I was mucking around on YouTube earlier when I came across this video about the Elizabeth Line. What struck me about it was that the young man in it seemed to have some rather autistic traits: that is, the way he seemed to fixate on certain details as well as the way he spoke reminded me of autistic people I have met. Of course I am not an expert by any means, but if I had to guess I would say that the guy met the criteria for being autistic.

Obviously I have no idea whether he has been diagnosed as having autism or not; yet it seems to me that the more important question is whether it actually matters. Would having such a diagnosis help him, would it burden him when a label which he can obviously live without? He may or may not happen to fit a set of criteria for a neurological disorder that are essentially arbitrary and change over time. What actual benefit would such a diagnosis be to him? It might entitle him to more support; but I think that ought to be weighed against the rather significant social burden that having a condition like autism can have.

On the other hand, a little later in my day I came across another example. I was on my trundle through Charlton, and I encountered one of the ladies I knew when I lived there. We used to be quite good friends,  but sadly just before I moved to Eltham we had a massive argument and since then she has refused to speak to me. Today, however, I noticed her sitting outside a cafe, and on the spur of the moment I decided to try to put things right.

I went around the corner and typed a short reconciliatory message into my speech app, before going back to play it to her. It would seem that my optimism was misplaced though as she still would not speak to me; and even when I sat there for ten minutes I was still met with the same sneering, contemptuous look. No matter how hard I tried or what I said, she refused to reconcile with me.

In the end I had no choice but to roll away, feeling a mixture of anger, frustration and bemusement. Such behaviour seemed abjectly immature – surely no grown adult could be so petty, or hold a grudge for so long! But then it occurred to me that perhaps this could be explained by neurology: if the woman is on the autistic spectrum, it would make her behaviour easier to understand and forgive. It certainly fits with what I understand an autistic spectrum disorder to be. On the other hand, that could just give her a ‘get out of jail free’ card which she does not necessarily deserve, effectively absolving her of personal responsibility for her abjectly infantile behaviour.

Thus the question is whether such labels can be useful: does telling someone they have autism do them any good in the long run? They will presumably go on behaving like they always have, whether you label it or categorise it or not. It might help us explain or understand the way certain people behave; but on the other hand that might just make things easier to dismiss.

The Spectrum To Meaninglessness

I know what autism looks like, probably better than most people. I grew up going to a special school where there were quite a few kids with severe autism and Profound and Multiple Learning Difficulties. Then, a few years ago, I spent some time volunteering at Charlton Park Academy, working with kids with various neurological conditions, including autism. I know what it looks like: it is a profoundly debilitating condition where people barely comprehend the world around them, how to communicate or how to look after their selves. It is nothing to be joked about or laughed at.

These days, however, the term is being used more and more flippantly. Claiming to be autistic seems to be some kind of craze or fashion. In the last couple of weeks, for example, we have heard both Boris Johnson and Elon Musk claim to be on the autistic spectrum, as if that somehow explains or excuses their behaviour. I obviously have severe problems with this. Medical conditions are medical conditions: they aren’t something you can just claim to have, when it becomes politically or socially fashionable. Nobody could suddenly claim to have Cerebral Palsy or Muscular Dystrophy, out of the blue.

Yet with Autism, the definitions seem to have become so vague that just about anyone can now claim to be on the autistic spectrum; any kind of antisocial or selfish behaviour can be excused by adopting the label. Parents seem to now do it in order to make excuses for their unruly children; individuals now do it in order to feel different or special. Behaviours which were quite recently perceived as perfectly normal, if slightly antisocial, now fall under the autism umbrella, frankly making a nonsense of the entire condition. Whereas CP and MD have clear, fixed definitions and causes, the definition of autism seems to be deliberately being made wider and wider.

The problem is, as I’m sure many others are pointing out, once you start labelling and pathologising behaviours or groups of behaviours in this way, they become ingrained or reinforced. Once someone starts thinking they are autistic or ‘special’, consciously or unconsciously they start to make such behaviours even more overt. Behaving in such a way has earned them attention, a niche, label, or some other form of gratification, so it becomes more obvious. The behaviour thus becomes more pronounced, so it becomes a self-fulfilling prophecy. It would be far better, in my opinion, to let these behaviours remain undiagnosed and uncategorised; to continue to see them as perfectly normal, if slightly flamboyant or eccentric, ways to behave. As soon as a label is attached to a set of behaviours which had previously been seen as normal, they becomes something else: something which people now seem to be wanting to attach themselves to, for social and political reasons. Frankly, having undergone a lifetime of social ostracisation and being treated as abnormal or different, I can’t see how it wouldn’t be preferable for people to want to continue to perceive themselves – and be perceived by others – as normal.

Autism is a very serious, profoundly debilitating medical condition. I am no expert in it, but I know enough to say that it is now being made a mockery of: people seem to be announcing they are autistic with very little understanding of what that really means. It’s part of the issue I started to outline here: When people choose to ascribe labels to themselves without understanding what that label means, that label gradually becomes meaningless; just as the wider the definition of a neurological condition becomes, the less intellectual or academic precision it has. My mind goes back to the profoundly autistic kids I knew at school: they couldn’t stick up for theirselves, so perhaps I should.