life

Could I Change Someone’s World?

For the last couple of weeks I’ve had a question rattling around in my head which won’t seem to pipe down. It first occurred to me on the day my powerchair broke down on the other side of London. Just before that catastrophe, I had been once again thinking about how wonderful it is to live in this fantastic city, and about how it all stemmed from the fact that I met Lyn. Had I never met her, I simply wouldn’t be here: I would never have moved to London and got to know this incredible metropolis. The chances are that I would still be living in Cheshire with my parents, and the notion that I could ever live in my own flat in south London would still seem absurd, or even frightening.

Meeting Lyn put an end to that: during my ten years living with her, not only did I start to get to know London, but I also learned that I didn’t need to rely on the cozy support structures which I had been used to since childhood. My world changed from a quiet, conservative two-storey Cheshire town to one of the greatest, most vibrant metropolises on earth.

When I think about it, it’s hard to sum up just how different those two existences are. Here I am, exploring this city, flitting on and off busses and tube trains, trundling around shopping malls and skyscrapers and royal parks; going to cinemas and concerts and shows, just like any other Londoner. I’m living a life which would once have seemed unimaginable. And it’s all because, around seventeen years ago, I received an email from someone called Lyn. Had that not happened, and had she not had the kindness to invite me to move in with her, zark knows how things would have turned out. That is not to say that life before Lyn was bad or uncomfortable; but that meeting Lyn took it in an energetic, thrilling, previously unthinkable new direction. She showed me what is possible.

What I find myself wondering now though, is could I one day make the same sort of difference to someone else? Could I change someone’s life as fundamentally as Lyn changed mine, and bring as much joy, wonder and potential for awesomeness into someone’s life as L brought into mine? I profoundly hope I can: It seems only fair, after all. The only question is, how?

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?

Pavements, Powerchairs, and Jaw-Dropping Kindness

To be honest yesterday afternoon for me was long and frustrating, mostly sat stuck going nowhere on a pavement in my powerchair in Kensal Green. I had headed that way to try to explore the area, and hopefully find a new way to the old family house in Harlesden. It looked straightforward enough on the map: take the Elisabeth Line to Paddington, follow the canal west for a bit, then turn right. I didn’t think it was that far, and I’ve been wanting to start to explore that part of London for some time.

It had been going rather well and I had nearly got there, when my chair suddenly came to a juddering stop. It has done it before: the power lights start flashing, and it refuses to move. Of course I immediately started to panic: without wifi, I couldn’t contact anyone, so I was stuck. Fortunately – and I can’t believe my luck with this – within a minute or so a young woman came the other way along the pavement. She asked if I needed help, so I explained the situation to her.

Remarkably, she then spent the rest of the afternoon with me, making countless phone calls, including one to my parents, and eventually arranging for a wheelchair accessible taxi to pick me up and take me home. The young lady, who introduced herself to me as Agatha and had a violin case as a backpack, didn’t know me: she didn’t have to do what she did, but acted out of pure, jaw-dropping kindness.

To cut a long, frustrating afternoon short, I got home at about six last night, Artur waiting for me, slightly worried. Thanks to things like the Elisabeth Line, ferrying us at daunting speeds under London, it is easy to forget just how vast the metropolis is; only for it to come juddering back when you spend two hours in a taxi, crawling at rush hour across the city’s surface. It had been a long day, and I got home knackered. Yet, ultimately, I suppose in a way yesterday was a good day: I explored a new area, and had a new experience. Best of all, I made a new friend. It is only thanks to people like Agatha that I can live here, roaming London in my powerchair. Without her, I would have been truly stuck, going nowhere on that pavement the other side of London. I’ll always be grateful for the staggering generosity of people like her. Of course, we established contact on Facebook, so I now really hope we could meet again sometime, perhaps for a coffee, so I can thank her properly.

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.

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.

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.

Bare Bums And Blue Powder

This is resoundingly not the entry I thought I would be writing this afternoon. I thought I’d be writing a short, jolly entry about London still clearly knowing how to party, and about never having seen so many bare women’s arse cheeks, having taken myself up to the Notting Hill Carnival. My parents had warned me against going, but as usual my curiosity had got the better of me. After all, having gone to last year’s carnival and the one before it, I was thirsty for more.

It had started well enough: a nice, easy journey up to Paddington followed by a short roll. When I found the carnival itself everything seemed fine, and I was once again fascinated by all the people in all kinds of weird costumes. After watching things for a while, though, I decided to follow the parade. That was a mistake: things become more and more crowded, and less and less pleasant. It became harder and harder to move my chair. It soon stopped being fun, and the music being played around me was far too loud.

When sticky, coloured powder started being thrown around, I decided I had had enough: I went into Red Alert, getting out of the situation as quickly as possible, battling my way through the thousands of people who had gathered by then. That certainly wasn’t the predicament I had expected to find myself in.

By the time I had got back to the station I had had chance to reflect a little. To be honest it was quite incredible to see such a large area of London, usually swarming with traffic, given over to such an enormous cultural event. On the other hand, given that the carnival was supposedly a celebration of Caribbean culture, I couldn’t help wondering how much of a role imperialism or cultural appropriation had had to play in its origins. After all, Notting Hill is a white, very affluent area of London.

Such questions, however, would need to wait, as at that moment I was far more concerned about whether I could get all the blue powder off my clothes. Having returned from Paris just two days ago, it has been quite a week; but I suppose today goes to show that I really need to listen to my parents more.

The Beguiling City

I really, really wish I knew more French. I think I’ve written about this before: the fact that I don’t know any language other than english feels hugely embarrassing to me, like a mark of extreme ignorance. I suppose you could just pin it down to the fact that special schools have other priorities- why bother teaching kids a language they’re never going to actually use? Here in Paris though, as I roll around this magnificently beautiful city, I find myself wishing I could understand what the people around me are saying or what the street signs mean.

I realise that I might have seemed a bit negative in my last few entries: too eager to criticise, as though I didn’t really want to be here. Let me assure you, noting can be further from reality. While I may have seemed somewhat eager to point out the problems or drawbacks we have come across, this was simply a case of my instincts as a blogger coming to the fore. The fact is I like that Paris: it is an exceedingly beautiful city, far more aesthetically charming than London. It’s narrow, picturesque streets draw you in, so that, in spite of its woefully inaccessible metro system and thousands of cafes with steps into them, it’s impossible not to fall under its spell. 

The longer I am here, the more immersed I feel, the more intrigued I am by the city and it’s fascinating history. I  love the little book shops, the streets named after writers, the thousands upon thousands of sculptures and statues; I feel so beguiled that John and I are already starting to plan our next trip here. The very streets and buildings captivate me like nowhere else. That is why I feel so sad about my lack of French, as it will always be a barrier between myself and truly getting to know Paris.

I Can’t Just Ignore This

I stopped going to pubs a while ago of course, but one of the pubs I used to go to quite regularly was the Banker’s Draft in Eltham. It was a friendly Whetherspoon’s, and I came to know the staff and clientele there fairly well. Having stopped drinking though, I hadn’t been in there in ages. However, something happened this afternoon which I think I ought to record here: I was just going past the pub when two fairly young men standing outside of it holding pints thought it would be funny to try to take the piss by shouting ‘Timmah!’ I’d barely noticed them, but their insult made me immediately furious. I’m sorry, but I refuse to be the butt of some uneducated chav’s joke.

I stopped and told them to shut up, which they seemed to find funny. They started insulting me more, so I decided to go into the pub and ask the bar staff not to serve them. What else could I do? I absolutely refuse to just let such things slide. Ignoring it would simply allow it to continue; and I am too proud of what I have achieved to tolerate being the object of some imbecile’s ridicule.

Inside the pub, however, I was just told to calm down – it quickly became obvious that the staff had no intention of doing anything, and the two men would carry on being served. I left still feeling quite furious. Here’s the thing, though: if I had been a member of any other minority, say a black guy, and those two men had started spouting racial slurs, would it have been similarly tolerated? Would the black guy have just been told to ignore it? Would the two racist thugs have been allowed to continue to drink? Probably not, so why is it acceptable when they do it to me?

The problem is, this is happening more and more. A few days ago I wrote about schoolchildren thinking it was funny to take the piss, but I’m not just getting it from children. To be honest, I suspect it is a consequence of the rise of right-wing politics: as such reactionary stupidity has become more popular, people think they no longer have to abide by the social rules of tolerance and decency. Taking their cue from morons like Farage and Yaxley-Lennon, they think it a sign of masculinity and bravado to start hurling insults at those they assume can’t shout back. That is why it is essential that I don’t just let things like what happened this afternoon slide.

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.

A EUO Day

I’m sure I don’t need to tell anyone how useful Ipads can be: Not only do I use mine as my communication aid, but also to browse the web, check my email and keep in touch with my PAs when I’m out and about. I also often use it to draft blog entries, ready to put online when I get home. The problem is, that all uses quite a bit of battery power, so it is fairly essential that my Ipad is put on charge every night. When it isn’t, it can be rather problematic.

Today, for instance, I was out on my usual trundle when I noticed my Ipad hadn’t been charged. I’d got as far as Lewisham when I noticed it was down to 52%. Now, that wasn’t catastrophic, and no reason to abandon my outing and return home, but I knew it would limit me. Today would have to be an Essential Utterances Only (EUO) day: in order to preserve my Ipad battery, I would need to talk to people only when I really had to. There would be no chatting to strangers or telling street preachers to shut up. Otherwise, if I got into an emergency and needed to ask for help or give people instructions but my battery had died, I would be totally stuck.

It’s rather strange when you think about it: this situation effectively rendered me dumb or voiceless. I had to go all day trying to avoid talking to people, just because my Ipad hadn’t been charged. In a way it put a barrier up between me and the rest of society. If I met someone new I would be unable to introduce myself and tell them who I am or what I do. If I bumped into someone I knew I wouldn’t be able to update them with my news. In the end it wasn’t that much of a problem; yet I find it odd to reflect upon how such seemingly insignificant things can have such large social and psychological consequences.

Coming Home To A Much Darker World

Something is very, very wrong at the moment.

I just got back from central London. I thought I would go up to watch the Lioness’ victory parade: well, you know how captivated I am by such big cultural occasions, and it wasn’t as though I had anything better to do. To be honest, though, I didn’t find it that inspiring, and I was struggling to decide what, if anything, to say about it on here. I lined the Mall with thousands of other people, just to get a brief glimpse of an open top bus going past. That’s about it, really. I couldn’t actually see much because there were so many other people standing in front of me.

Mind you, after the parade itself I treated myself to a lovely trundle through St. James’ Park and eventually to Bond Street Station, during which I once again reflected to myself how lucky I was to live in such an awesome city, where such marvellous events take place, and which has such a wonderful, ever-improving public transport system. Where else could someone like me live a life like mine? By then though I was getting rather hungry, so I headed home on the Elisabeth Line for some lunch.

Once in, I put the news on while I ate, as I often do. I was greeted with images which instantly chilled my blood: pictures of children in Gaza, starving to death; vast scenes of deprivation and destruction. The contrast with what I had just experienced could not have been more horrific. Here I am, in this cosmopolitan world city, arsing around going to all these parades and cultural events; at a time when elsewhere in the world we are watching a conflict unfold, the horror of which we haven’t seen in decades. I know I touched on this a couple of entries ago, but I honestly find this disturbing. We seem to be acting like nothing’s going on, or collectively ignoring the unignorable. I was happily eating my lunch while, on the screen in front of me, emaciated babies were crying out for food. I had just ridden a brand new subterranean railway which cost billions of pounds while elsewhere in the world entire cities are being laid to waste. Children are starving, people are suffering, war crimes of the worst kind are being committed; yet still we parade our footballers around in busses and cheer their victories as if sport is more important, or as if the wider, darker world can be put to one side while we sing songs and drink champagne. Something here is very wrong indeed.

Help With My Water Flask

I’m quite sure everyone will be having issues in the current warm, stuffy weather. Long story short, it was probably the reason for my hospital visit a couple of days ago. I obviously got extremely dehydrated. The thing is, when I’m going out and about in my powerchair, I don’t get much of an opportunity to drink much water, and frankly it usually slips my mind. When I’m trundling around the metropolis, the fact that I need to take on water gets rather forgotten about.

To help with this, a couple of days ago my friend and PA dom bought me a great flask which we can fill with water (or ‘fake’ mojito made with alcohol free rum!) which we can put in my bag and I can take around with me. It was the obvious remedy, you must admit. The thing is, the flask now goes in my the bag which hangs on the back of my powerchair: to get to it, I now need to stop my chair, take my Ipad off my lap, get out of my chair, walk around to it’s bag, open it, and so on. For someone like me, that isn’t a straightforward task. Rather than going thirsty, then, what I’ve been doing is going up to people and asking them to help me with the bottle.

Obviously I try to stick to guys I know I can trust, such as policemen or security staff; yet what I’ve been finding is that most people seem happy to help when I explain the issue to them. They are okay with going to my bag, getting out my bottle, opening it’s suckable spout up and holding it to my lips. A lot of times their fingers get rather wet or sticky, but they usually just ignore it. I must say that I find this enormously reassuring to the extent that I thought it needed noting here. We keep hearing how we live in such fractured, ostracised times, but the spirit of human kindliness and friendliness is clearly still there if you look.

Paradise City Indeed

There are times, every now and then, when my jaw drops in astonishment of how truly lucky I am: moments when one of my dreams has come true, or a crazy far-fetched fantasy has been somehow brought to life. Last night saw another of those amazing moments.

When I got wind that Guns and Roses were going to play Wembley Stadium this summer a few months ago, of course I automatically thought that watching them would be great, and contacted mum to get tickets. These days, it seems that my mum is still the best person to ask when I want to arrange such things. Mum duly obliged, and I was soon counting down the months to last night. I have been into Guns and Roses since school: aged about ten or eleven, a couple of my classmates were into them, and I was struck by their mixture of rebelliousness and jaw-dropping electric guitar riffs. In the thirty years since, whenever I wanted to let off a bit of steam or the world got too frustrating, I always put on a Guns and Roses song: the music seemed to be able to do the screaming and shouting for me.

To have at last watched them perform live, then, at London’s greatest stadium alongside a crowd of tens of thousands, was utterly incredible. The atmosphere there last night was phenomenal, like nothing I had ever experienced before. Of course, I can compare it to things like going to watch Greenday or The Cat Empire, but in a way this was on another level. The volume was almost deafening, so much so that I could barely make out the lyrics being sung. I couldn’t even make out what John was saying, sat right next to me. Yet as the sun went down and the sky grew darker, and the lights in the stadium came on, there seemed to be a wonderful aura about the place: the audience in front of me all turned small lights on, so it looked like a reflection of the night’s sky above us. As the band went through their back catalogue*, often getting up and dancing to my favourite songs, it struck me how truly lucky I was. And when they finished the evening with Paradise City, probably one of my favourite pieces of music ever, I was absolutely euphoric.

*Mind you, I was slightly disappointed that we must have arrived slightly too late to hear them play Live And Let Die.

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.

Brief Breakfasts Are Sometimes Best

Breakfast was quite brief this morning: my PA Abdul arrived at about half seven, made my coffee and toast, helped me with my shoes and socks, did another couple of things and got on his way. Obviously, things usually take a bit longer, but today Abdul had somewhere else to get to so it was quick and efficient. Frankly, that’s fine by me: I’m now fed, caffeinated and ready for the day; after writing this I’ll get in my powerchair and set off to continue exploring the world’s greatest city. Then, this evening, I’ll get back home and wait for Abdul to arrive again to cook dinner. That’s just the way I like it.

The thing is, there was a time when this would have been unimaginable. Growing up, I tended to assume that I would always need constant help; either that or I would always live at home with my parents like a perpetual adolescent. The notion that I would one day have my own flat in South London, the ability to go in and out and roam around as I pleased, choosing what I wanted to eat and where I want to go, would have seemed absurd – even scary. The assumption was that I’d be unable to do anything without the help of my parents or an able-bodied person. Fortunately, my experience living on campus at university, then moving down to live with Lyn in 2010, put an end to that.

However, many disabled people still seem to think that way. There seems to be a residual assumption, especially among people with CP, that they need a personal assistant constantly with them, and that they wouldn’t be able to function without twelve or even twenty-four hour help. Although there is an element of ‘to each their own’ to this, frankly I fail to see how anyone can live like that. These days, I enjoy being by myself and doing my own thing: in my chair I can go where I want; if I fancy a coffee I’ll pop into Costa or Starbuck’s; when I feel like lunch I’ll grab a wrap; if I need to communicate with anyone I’ll just tap it into my Ipad. Inaccessible shops and tube stations aside, I have more or less the same abilities as any other citizen. Then, in the evenings I return home and wait for my PA to arrive to cook dinner.

I think this is a healthy way to go about things. Obviously, there will be periods when I need far more assistance: when I go abroad I naturally go with someone like John. Whereas at home I can quite easily feed myself using my Neater Eater, it would be hard to carry such equipment across places like India or Morocco. The same goes for my powerchair, which is why when I go abroad I take my manual chair, and therefore require far more support. Besides, it’s always far nicer to travel with a friend.

Here at home though, living in my own flat which I can go in and out of at will, I don’t see why I would need anyone here with me more than they currently are. If I had someone with me for eight or twelve hours a day, following me around on my trundles across the metropolis, I daresay things would soon become untenable. Thus this is the way I like things; and I know that, when I need more help, it is only a message over Facebook away. I firmly believe that is the healthiest attitude to have, and that thinking you need constant support and a personal assistant 24/7 ultimately traps people with conditions like Cerebral Palsy in a form of perpetual childhood.

I find myself wishing that I could somehow go back and tell my younger self how things would turn out: how, while mum’s dinners might be both delicious and dependable, it would one day be far cooler to do my own shopping before asking my PA to cook what I fancy. That, rather than being the hostile, frightening place I once assumed it to be, the world was crammed with more wonder and excitement than I could ever have imagined. That is one of the reasons why I blog: if there are any young disabled people out there as timid as I once was, I want to tell them that, once all the basics are in order, they are ultimately just as able as anyone else.

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?

The Most Unpleasant Few Hours of my Life

It is incredible how much better a good night’s sleep in your own bed can sometimes allow you to feel, and how much it can help you regain your usual perspective on the world. It has been quite a rough, nasty few days to be honest: I was considering keeping all this to myself because it was such a nightmare, but as usual the blogger in me has taken over. Basically, it started six days ago, when John and I were in Paphos. After quite a few Keo beers the night before, I woke at about 4am, feeling slightly strange and disoriented. I lay awake, unable to get back to sleep, until John woke at around seven. When he did, he passed me our hotel room’s television remote control so I could watch a bit of TV before getting up and dressed. But then I noticed something: my fingers wouldn’t press the right buttons on the control, and I could suddenly sense something was very, very wrong.

It was like nothing I had ever felt before. I had had quite a few nasty absences over the previous few days, but this was of another order. My fingers were going haywire, and it seemed like reality itself had gone out of kilter. It was rapidly getting worse. I told John, who phoned an ambulance.

I cannot remember the next few hours, so forgive me if I omit the detail; I just know that they were the most unpleasant, frightening hours I have ever experienced. Reality seemed to have become chaotic, time seemed somehow to be repeating on itself. It was horrible, and something I hope never to go through again. I must say, though, that the way in which John stood by me that day, looking after me, making sure I had the medical help I needed, was truly humbling. I doubt there are words in any human tongue which can come close to expressing the gratitude I owe him, save to say that I don’t think I would be here now writing these words, had it not been for his help. I will now forever regard him as something akin to a brother – Samwise to my Frodo, Spock to my Kirk.

We spent the day in the hospital. I had many tests, including a blood test and EEG. My memories are predictably extremely hazy. I’m not sure how many epileptic seizures I had, but it was several.* All I remember is being unable to stop my arms and legs shaking. There was talk of keeping me there overnight, but I preferred to be taken back to our hotel, as it would be easier for me to eat etc there. I’d been put on a drip of some kind, and the fits were easing off. John took me back to our hotel, and I had a fairly good night’s sleep.

That was a few days ago, and fortunately since then I have seen no sign of a recurrence, although to be honest I didn’t feel quite right for three or four days. I don’t think there is any clear cause, but obviously I must do all I can to prevent it happening again. That includes improving my diet and avoiding alcohol at all costs. I went to the local hospital yesterday to get checked, but nothing was found. My deepest regret is that this nightmare ruined what was turning out to be a wonderful, fascinating trip. Again, my profound gratitude goes out to John: not only did he once again take me on an amazing holiday, but this time he helped me through the most unpleasant few hours of my life. How lucky I am to have such a friend.

*I presume they were epileptic, given my absences are essentially a mild form of epilepsy, but of course I could be wrong

The Greatest relief I Have Ever Felt

Yesterday was so crazily farcical that I barely know where to begin, but I think I’ll blog about it anyway just for the record, not to mention the enormous sense of relief I ended up experiencing. It all started the evening before, when John noticed we had somehow lost the power cable for my iPad. By the morning my charge was getting really low, so we decided to go buy a new cable. I use my iPad a lot, not least as my communication aid. The fact that it wouldn’t turn on at all put me in serious trouble. John asked the staff at the hotel where we could find one, and they suggested a shop not too far away.

We got to the shop perfectly fine.   There was a step up into it, so John went in and got the cable we needed. He then came back out to get my credit card from my bumbag.  The problem was, he couldn’t find it anywhere in my wallet.

We both began to panic, me especially: I was sure I had brought my card. I rarely use it these days, but we assumed I would need it here. We couldn’t find it anywhere in my wallet or bumbag though! I quickly began to loose my patience. Fool that I am, I must have left it back in London. We were screwed.

I was on the verge of suggesting forgetting the whole trip and going straight back to the UK, when John suggested I lean forward in my wheelchair. In a moment of jaw-dropping relief, he found my credit card down the back of my trousers. I have genuinely no idea how it got there, or how John guessed it was there. It was, though: safe and sound, and I had nothing to do worry about. The relief I felt in that moment was like nothing I had experienced before. Our trip could continue, and I hadn’t made the screw up of my life.

We spent the rest of the day enjoying more of Cyprus. We bought the charger with cash in the end, and my iPad is now fully charged. Today we are going to explore more, but I certainly plan to keep an eye on my credit card, and make sure it doesn’t disappear down my kecks again.

We Are Being Trolled

I know I touched upon trolls a few days ago, but it seems to me that they are becoming more and more virulent. I was just watching the morning news, when it struck me that we are all being trolled. On the internet, a troll is someone who posts controversial or inflammatory content into a forum to get attention or stir up trouble. They deliberately wind people up for their own amusement. I see it all the time, particularly with respect to ‘debates’ like the shape of the earth, where people seem to want to argue black is white that the world is flat, just to perpetuate the debate. Their arguments are getting sillier and sillier, more and more absurd, merely to stir people up and get them to respond.

However, it seems to me that we are all now being trolled on a far broader scale. This morning note how Elon Musk has tweeted all kinds of rancid, baseless bullshit about Labour and Starmer etc; we see guys like Trump and Farage doing something similar. Isn’t it obvious that they’re just trying to wind people up and get attention. They want people to react simply to pull the focus onto them. In the press conference the PM gave earlier about the plans for the NHS, half of the questions from the media concerned Musk, simply because he had posted an idiotic tweet.

Thus people like Musk, Farage and Trump are effectively nothing more than internet trolls, and would just be ignored if we collectively had any sense. The more we fail to do so, the more we feed their craving to be the centre of attention, and the worse and more inane their spewings become.

Wrong Kind Of Mummy, Matt!

Sometimes things happen which part of me thinks are too embarrassing for me to record here, yet I feel compelled to do so because it is so amusing, or to teach myself a lesson. A good example of this would be what happened yesterday. It was Boxing Day of course, and my brother Luke, his wife Yan and my little nephew Elias came to visit me and our parents in Harlesden. We were all going to have Boxing Day lunch together.

To be honest I was feeling rather pleased with myself: I had gone to the same shop at the o2 where I got my “Make America Think Again” baseball cap and bought Luke and Yan caps with the word mummy and daddy in Chinese on them. Of course, neither I nor the lady helping me at the shop knew a word of Chinese, so I had asked her to type the words Mummy and Daddy into google translate. I thought I was being clever and multicultural.

Luke, Yan and adorable baby Elias arrived at around one yesterday. Naturally, the opening of presents was quite high on the agenda, and I was very eager to see what they would say about my gifts. I expected a mixture of shock and amusement. As soon as she caught sight of the cap I had got for her, however, Yan looked rather confused, as though something didn’t make sense. Luke’s “Daddy” hat was fine, but not Yan’s.

A few seconds passed, and then Yan made the connection. The cap said mummy, but it was the wrong kind of mummy. Total fool that I am, I had given her a cap with the Chinese word for the ancient Egyptian embalmed pharaohs written across it’s front!

When my sister in law told me this, I curled up into a ball in a strange combination of total hilarity and utter embarrassment. Only I can make such mistakes. Obviously everyone else found it just as funny, reassuring me that it was the thought which counts. Even so, I suppose it will teach me not to try to be so clever!

The Room Where Time Stops

I suppose I have a pretty strange relationship with the front room of my grandparents house in Harlesden. I vaguely remember that when I was five or six, I used to be reluctant to go in there, preferring to play in the back room or the passage next to it. The front room was slightly too smart for me and my brothers to play in.

Yet, sat in that very room with my parents as we opened our presents this morning, I couldn’t help feeling utterly astonished: on the walls around us were photographs of four generations of my family, spanning about seventy years of history. On one wall are three framed black and white  photos of my mum, aunt and uncle. Probably taken some time in the sixties, my mother looks about ten – a smiling, exuberant,  bubbly young girl.

Opposite that wall though, on a table by the front window, now stands a beautiful glass photograph of my niece and nephew which my parents opened just this morning. They  both bear the kind of cheeky, fun filled smiles that only children their age seem capable of; it’s a beautiful, beguiling picture which I found staggering when I first saw it earlier, astonished at how quickly my niece and nephew are growing.

That glass photo now sits on a table next to an electric photo frame sent by my other brother Luke, showing a montage of pictures of the newest member of our family. Elias is now around thirteen months old, and also growing rapidly. The photos reveal a young boy so full of life, for whom the world is still so boundless and captivating.

On the third wall of the room and on the mantlepiece above the old disused fireplace, are various other photos of other members of our family. There are two of my Greek Cypriot grandparents, my Yiayia and Bappou, looking just as loving and caring as I remember them to be when they lived here and we used to come to visit them. There is also one of them on their wedding day, taken before anyone here today was born. And there is also a photo of myself, my brothers and cousins – their grandchildren- as a group, probably taken when we were last all together.

Looking at the pictures on these three walls, they inevitably remind me of the unstoppable passage of time. My grandparents are no longer with us, and my brothers and cousins are in various places around the world, as far afield as Brazil. Yet here in this north London house is where that all started; where, over seven decades, three generations have been raised with warmth and love. Time, of course, can never stop,  just as my brothers, cousins, nieces and nephews should never stop heading out into the world;  but the pictures on the walls of the front room capture moments in time which bring the family together again.

Happy Retirement Mrs. Hickson

I came across some news which I think is quite astonishing last night. On my old school’s Facebook page, I saw that Chris Hickson was retiring. That was a name I hadn’t heard in a long, long time: Mrs Hickson is – or was – the Speech and Language Therapist at Hebden Green. One of my very earliest memories is of her coming to the nursery department of school to take me to her office for our weekly sessions. I must only have been four or five at the time; the sessions were one-to-one, as I was the only kid in my class who needed speech therapy.

My weekly meetings with Mrs. Hickson continued throughout my time at school. If memory serves, they were often basically just chats, where she would just encourage me to speak. This was long before I got my first communication aid, so it was obviously important to get me to talk as clearly as possible. We used to talk about absolutely anything, especially my favourite books at the time. Obviously, Mrs H would then structure exercises for me around those subjects, but I remember sessions with her being fun and engaging.

Once, getting into her office, I threw my school bag onto the floor before sitting down. I was at the age when throwing things around seemed like a fun thing to do. I remember Mrs. Hickson looking quite aghast at me: “Matthew,” She said, “What if that bag contained a communication aid? It wouldn’t be a good idea to throw it around like that if it did.” At the time I didn’t feel very concerned, but I can see now that it was the beginning of something which would become far more significant for me.

Indeed, it was with Mrs. Hickson’s help that I was given my first Lightwriter. It was a relatively primitive device, compared to the communication aids we’re using now, but it completely revolutionised my life. I was suddenly able to talk to anyone and everyone I wanted, not just people who knew me well enough to understand my speech. The first morning I got one, I remember going up to shop keepers in Macclesfield and asking them for all kinds of bizarre things. It was like a whole new world had opened up.

Obviously, it was only because I had this new ability that I could do all kinds of things which would have been difficult previously, like going to the comprehensive school next to Hebden for GCSE english classes. That then lead to me going to college, then university, and eventually moving down to London. That would simply not have been possible had I not had a communication aid: talking to anyone like Esther, Charlotte, John, or the guys over in Tesco, would have been off limits. These days I use my communication aid daily; it is essential to me. The last twenty years of my life could not have happened had I not had the ability to communicate with other people efficiently.

All that is ultimately thanks to Mrs. Hickson and her foresight. I am thus highly indebted to her. No doubt she has helped countless other young people in similar ways. Frankly, given that I left school over twenty years ago, finding out that she is only just retiring yesterday struck me as astonishing. Indeed, Mrs. Hickson had been working at Hebden since the seventies: her legacy must surely be incredible. In many ways, it is because of her that I lead the life I now do, trundling around South-East London, talking to all kinds of people; going into shops and asking for all kinds of things. I therefore wish Mrs Hickson the happiest of retirements. Most of all, I’ll always have fond memories of our weekly speech therapy sessions back at school.