health

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.

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.

An Afternoon In Westminster

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

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

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

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

Not A Very Uplifting Experience

Something bloody stupid happened this afternoon. It’s one of those slow, cloudy Sundays, so I thought I would pop up to Stratford for a trundle around the Olympic park. Up there, to get from the station to the park you either have to go up a flight of stairs or use a lift, as I do. This leads to a large foot bridge over the railway station, which is the only way between the older and newer areas of Stratford. The two lifts are really over used, and over the years I have had quite a lot of trouble with them.

Today, however, really took the biscuit: One of the two lifts was clearly completely out of order, and I must have had to wait at least ten minutes for the second to arrive. When it did, though, it was already full of people who were obviously perfectly able to use the nearby stairs. What followed was quite a furore over who should be using the lift and who should not. Things become rather heated, and to cut a long, stupid story short it was around another five more minutes before I was eventually able to get into the lift. They seemed to think they had as much right to use the lift as I did, if not even more. I’m not sure what happened then: as I was entering the lift I might have knocked the door with my powerchair or something, because it then completely refused to go up to the floor I needed to get to. No matter how many times the button was pressed, the lift wouldn’t move.

After a few minutes two other wheelchair users got in. By then the ambulant people had got out to use the stairs, but those of us who had no choice gradually began to panic. For a while the zarking lift seemed broken. Fortunately things ended well, the lift started working again and finally went up to the bridge without the engineer having to be called out. As I trundled towards the Olympic park though, I found myself reflecting once again that such things would happen far less often if lifts in places like that were only used by people who need to use them; and that the episode would probably be good material for a blog entry.

Fancying A Drink

Alcohol-free rum is like football without the actual ball, or cinema without the films. I tried it last night, having found a bottle in a nearby shop, but was distinctly unimpressed. Frankly, it just tasted like hyper-sweetened orange juice. I have been off the drink since the nightmare in Cyprus, of course, but last night I really felt like a little fun. Needless to say I do feel a lot better for having stopped drinking, and certainly plan to keep it up; yet I must admit that part of me feels slightly conflicted.

Ever since school I told myself that, when my friends such as Lee Donnelly passed away, all caution would be thrown to the wind and I’d start drinking as much as I wanted. I planned it to be my way of remembering those guys; and after all, how else was I going to cope in a world where such bright lights can be extinguished so young? I didn’t intend to become an alcoholic, but rather ignore the voices of caution in the back of my mind and live life as full as I could. Now that I have once again cut booze out completely, and am not sure whether I can ever return to it, that plan has fallen by the wayside, and I must admit that part of me feels faintly sad about it.

Nonetheless, as I say I do feel far better these days. Last night’s experiment with alcohol-free rum may have been a disappointment, but I think it was born of a desire to let off a bit of steam, the way I used to. There is so much serious stuff going on in the world right now – so many wars, so much conflict, so much stomach-churning idiocy – that when Friday night comes round, you can’t help fancying something tto drink.

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

Real Cripples Don’t Need Lanyards

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

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

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

Isn’t CP Obvious?

I heard something on the breakfast news earlier which has had me puzzling over it for most of the afternoon: apparently, increasing numbers of parents are having to wait longer and longer to get their children diagnosed with various medical conditions, including cerebral palsy. “Hundreds of thousands of children with suspected neurodevelopmental conditions in England, including autism and ADHD, face unacceptably long waits to be diagnosed, the Children’s Commissioner has warned.” What strikes me as strange is that, to my knowledge, having CP is fairly clear cut and unambiguous. You usually get it if your brain is starved of oxygen at birth; and it’s pretty obvious whether a child has it or not as it often drastically effects their ability to control their bodies.

The notion that parents would have to fight to have their kids diagnosed with it thus strikes me as pretty strange. Their child could, of course, have a relatively mild case of CP, where they are still able to control their bodies more or less normally. In such cases, however, I would have to ask, is it worth diagnosing the kid at all? What would be the point of essentially labelling them for life, setting them apart from their able-bodied peers, when they can integrate as well and as happily as any other child? Obviously, if a kid is going to need help and support throughout their life, such a diagnosis will be hugely beneficial; but if a condition they may or may not have does not clearly effect them, then what is the point?

But here’s the rub: all this adds to my growing impression that more and more parents actually want their children to have special needs. They want their kids to be diagnosed as having a condition, whether they actually have it or not, in order to access the various social and political advantages which comes with it. After all, as contemporary society becomes more and more competitive, who wouldn’t want their child to have a little extra help, or be seen as special? The problem is, where does that leave guys like me, whose condition didn’t need to be argued over? As I wrote here, with more and more people defining themselves as having some kind of disability, I can’t help feeling that the very notion of being disabled is becoming usurped, devalued and rendered almost meaningless.