You know, it is of course wrong of me to feel so negatively about young people; I shouldn’t just assume that they are all going to try to wind me up or take the piss. Today, for example, something really nice happened. I was out and about as usual on my daily trundle. I hadn’t gong far when I encountered a group of young people on their break from a nearby school. As usual I automatically felt hesitant and assumed that I would have trouble with them.

I told myself to try to ignore them. As I passed the boys though, one commented on my cap. These days I roam London wearing a red baseball cap with the words “Make America Think Again” on the front. Obviously having glanced it, one boy, probably aged about seventeen or eighteen, asked if I liked trump. I stopped and replied that I think Donald Trump is a disgrace to human civilisation.

What followed then was a decent, well informed conversation about American politics. To my surprise and relief, the young man had no intention of being hostile, taking the time to let me type into my iPad. It was only a brief conversation, at the end of which I told him about my blog, and we were soon both on our way; but it just goes to show that I shouldn’t just assume that everyone is going to bully me.

I was just getting dressed while watching the bbc breakfast program, and they had an item about Christmas lunch. People kept saying the word ‘Potatoes’, and I noticed that I automatically thought the word ‘Po-ta-toes’ in response. That is, whenever anyone mentions the vegetable these days, there now seems to be an automatic connection in my brain to the scene in The Lord of the Rings when Sam and Gollum argue about the best way to eat fish. That makes me wonder why. Of course, I’ve loved that passage in Tolkien’s novel since Dad read it to me when I was a child: I remember laughing my head off when I heard Dad speak in Gollum’s voice (which, obviously, wasn’t the same as Andy Sirkis’s, although there are similarities). When I saw Peter Jackson’s rendering of it, translated pretty much word for word onto the big screen, I was thrilled. In fact, I would almost say it constituted a cinephiliac moment for me.

These days, of course, you can find references to that scene almost anywhere: it crops up quite regularly online on various fan pages, and you can even see it in supermarkets. It’s strange to think that something which was once so personal to me – a passage of text which I still vividly remember hearing in my father’s warm, loving voice – is now so widespread. It is now just another part of popular culture, and has become a meme. Just hearing anyone say the word ‘Potatoes’ on the TV is enough to make me think of it apparently, although whether that is due to seeing it crop up so regularly on the web, or in fact stems from my adoration of that scene as a child, is anybody’s guess. Nonetheless I find it interesting how this simple passage in Tolkien’s book has transpired and become something much larger. Cinema has the capacity to take such short pieces of text and magnify them, so that they almost gain a life of their own.

It has to be said that, there are days when, as a disabled guy, a Trekkie, a Bond fan or whatever, I feel I ought to comment on something even though I don’t particularly have much to say about it. No doubt this morning we have all been made aware that Strictly Come Dancing was won last night by Chris McCausland, a blind comedian. Obviously, from a disability representation perspective, this is a bit of a coup, or at least enough to raise an eyebrow or two. Yet to be honest I can’t say that I’m that fussed. I’m not into Strictly: it’s the Beeb’s big, Saturday night flagship programme, aired at a time when I can usually find something far more interesting to watch. I don’t find it particularly engaging. I watched a bit of it last night I must admit, but none of the performances struck me as especially spectacular or engaging.

Thus the fact that a blind man has won Strictly this year doesn’t excite me at all. If anything, I suspect that a large proportion of his public votes would have stemmed from the kind of patronising, “Didn’t the cripple do well” reaction many viewers will have had, making this news slightly nauseating. Above all, however, you can probably mark it down as a massive PR win for the BBC, but apart from that it must be said I don’t give two hoots. Good, solid disability representation in mainstream media is still dismally low.

I just sent the following to greenwich borough council:

Dear sir 

I am a Greenwich resident living in Eltham. As a wheelchair user I now use the Elizabeth Line quite frequently, and as such pass through Woolwich regularly. On my way through General Gordon Square this afternoon, I was extremely disturbed by a group of religious evangelical preachers: they were broadcasting their beliefs across the square so loudly that it was impossible to ignore. As an atheist I find such behaviour extremely offensive. In a city as multicultural and diverse as London, surely citizens have a right to cross a public square without religious dogma being hurled at them, so loudly that they cannot ignore it.

The religious group in question was apparently called Streams Of Joy. Would you please take my deeply held objections into account when you consider applications for such events. I find such spectacles extremely aggressive intrusive and arrogant.

Yours

Mattt Goodsell

Oh how I hate these winter months: it’s so gloomy, dull and cold outside. It gets so dark so early, I can hardly go anywhere before it’s time to come home! I was just thinking, though, that it’s about tome for something massive – some huge media announcement which nobody saw coming, but which cheers everyone up. Think about the announcement of James Bond’s appearance at the London Olympics, the 2014 reunion of Monty Python, or the return of the Star Trek The Next Generation crew. I personally loved all three, but the question now is, what could even come close? I can’t really think of anything, but would love to hear your suggestions. It just seems so long since we have had any spectacular news like that. Answers in comments, please.

I’m pretty sure I’m being paranoid, but kids seem to have become a lot more cocky, arrogant and disrespectful. I have noted here before how, these days, just the sight of a group of school children is enough to put my defences up: I worry that they will say something or start taking the piss.

It seems to be happening more and more regularly. Today, for instance, it happened twice when I was out on my trundle. I was passing a local school at about half past three earlier, when a group of boys on their way home decided it would be funny to start shouting things at me. I know I shouldn’t react as it just encourages them, but I really resent having to put up with being the butt of some school kid’s joke. Would anyone else just let them get away with it?

What, then, can I do about it. I thought about emailing the school headteacher, but given that I wouldn’t be able to identify the offending kids I doubt it would achieve anything. Besides, the bigger problem is that kids are becoming more brash and cocky in general as all their mass media rolemodels grow ever more headstrong, cocksure and arrogant. They think they have a right to bully and belittle people like me, who they seem to think are inferior to them and who can’t answer back. It’s a cultural issue; one which, unless we collectively do something about it, is only going to get worse and worse.

If anyone is expecting me to comment on what is currently happening in Syria, then I’m sorry to disappoint you. It’s a hugely complicated situation, of course, and I know as much about it as any other lay person. I will say, though, that I had to raise a metaphorical eyebrow at the fact that Joe Biden has passed comment on what is currently going on there, as if what he says still has any resonance in the area. He is a lame duck president, of course, but perhaps more pertinently it implies he thinks that the US still has the authority and prestige it once enjoyed over world affairs. The recent election of Donald Trump has rendered America a joke; the entire world can now see that it has no idea what it’s doing politically. It may still have the resources, but America’s days as the world’s leading superpower are now at an end. Frankly the country is a laughing stock, so idiotic that it would elect a deranged fascistic charlatan as it’s president not just once but twice. Nobody can take America seriously any more. Thus for Biden to still think that anyone will take what he says seriously, as if he still leads the world’s most prestigious country, one possessed of the authority to control affairs in the Middle East, is frankly laughable.

If you’re interested in getting a bit of background to the phenomenon I call Cultural Intrusion – ie, the idea that increasing numbers of people are choosing to identify as disabled for economic or political reasons – then I would highly recommend watching this Channel Four Dispatches program. To be honest, I’m becoming more and more convinced that I’m not just imagining it, and that more and more people are choosing to identify as disabled when they previously might not have. This documentary just confirms it, detailing how the number of people on long term sickness benefits has gone through the roof in the last few years. The primary reason seems to be financial, as such benefits give people a guaranteed, regular source of income which they might not get through employment. Be that as it may, I can’t help wondering where that leaves guys like me, who have been disabled all our lives, survived the special education system, have to put up with being infantilised and treated as second class citizens etc: are we not having our social positions and life experiences usurped and commandeered by people who know nothing about what we have been through?

The epic news today is that I can now go up and down the escalators at tube stations…and I don’t even have to leave my flat. The not-so-good news is that it only works in certain stations – those that Google has bothered mapping. When I heard, a couple of days ago, that Google Streetview now works in several London underground stations, I found it rather exciting. Sad git that I am, I’m a big fan of both the tube and streetview, so I think it’s rather cool that I can now explore tube stations like Bond Street and Westminster without even having to go out.

I honestly can’t decide whether today will go down as a treat, or whether I’ll remember it as a bit of a nightmare. For the first time in years I went to the theatre: it was John’s idea to go and watch a matinee performance of Stranger Things The First Shadow at the Phoenix theatre in Soho. To be honest I had never heard of it, but as ever I was eager to check out something new.

What I found myself watching this afternoon was unlike anything I had experienced before; for one it certainly wasn’t like my regular trip to the cinema. Of course I have watched plenty of plays, but this isn’t was darkness and more edgy. It’s essentially a horror story set in 1950s America, but it was performed in such a way that it made my heart pound in my chest repeatedly and scream out loud more than once. If I’m being honest, I must admit it made me feel rather uncomfortable.

On the other hand, from a technical perspective, it was masterful: the stagecraft reminded me how much I need to go to the theatre more often. It combined elements of film and live action seamlessly. Watching the actors weave their way across the stage was awe inspiring, like watching ballet dancers performing some magnificently intricate dance. I now intend to look up both the writer and director to see what else they have done.

I won’t go into any more detail because I won’t do it justice, but if you ever have chance to watch Stranger Things I would urge you to do so. It is edgy and suspenseful, and to be honest dragged a bit in places, but it is well worth an afternoon out.

I have been going through my old entries again recently, just to double check that I put all the missing links back in place. This morning, I came across some of the old entries I wrote about Simon Stevens around ten years ago. You may remember, back then I had major disagreements with the guy: he was writing all sorts of stuff, in the Huffington Post and other places, which I saw as very problematic. Yet, looking back over it, I must admit that what he was saying isn’t too far from some of the positions I now hold. For example, here Stevens wrote “Nowadays, everyone seems to be happy to be labelled disabled as they list their many impairments, as having one impairment is never enough these days. When I fought to be allowed to do things others assumed I  could not do, disability has now been reversed.”

Broadly speaking, he seems to be writing about what I call Cultural Intrusion, where people now seem very eager to define themselves as disabled for sociopolitical reasons when they previously might not have. Of course, rereading his articles, there is a lot I still disagree with Simon Stevens on – he still seems annoyingly self-important, for one – but in retrospect I have to admit he may have been on to something. One way or another, having a disability is becoming more politically fashionable, so what people like Simon and myself were once encouraged to overcome in order to fit in with our able-bodied peers is now increasingly being flaunted.

Even so, this is all ultimately moot: I’m not sure when or why, but I have been told that Simon Stevens died recently. I wrote this entry because I felt that I needed to get it off my chest.

In case you still wonder why I find the Tories so disgusting, this encapsulates it perfectly.

Today I think I’ll flag this video up of quite an important and interesting conversation between my friend Dr. Darryl Sellwood and Graham Pullin. It’s about the future of AAC and covers a range of issues. I don’t want to comment too much about it as I think it’s better to let the two highly informed men speak for themselves, although I must admit that what interested me the most about this conversation was that, rather than use a communication aid, Darryl’s contribution is revoiced by his PA Ferg. To be honest it struck me as a little bit awkward semiotically – I’d personally have used my VOCA – but I suppose it just goes to show that, these days, all methods of communication are just as valid if they get the message across.

My parents called this morning to talk to me about the blog entry I posted yesterday. They pointed out something that I hadn’t been aware of, but which I now find troubling. Looking back I should have realised, but there was a major religious component to the protest yesterday. I had assumed the people opposing assisted suicide were doing so out of a well founded concern that it could lead to far more dark consequences, but my parents pointed out that many people were there for religious reasons.

Thinking about this while out on my trundle this afternoon, it should have been obvious really. Along with many disabled people, there were quite a few overtly religious people at yesterday’s protest. When they started to play religious music out of a loud speaker, I naturally took issue, assuming that they were trying to hijack the action for their own means. Later on in the afternoon, I also got into quite a heated debate with a couple of people over whether you need to believe in god to have a sense of morality, ethics and right and wrong.

The problem I have now, however, is that I really, really object to the notion that the political action I attended yesterday had any kind of religious basis. I was there in an effort to make sure that the lives of disabled people remain as long and as full as anyone else’s, and that there is no chance that people will start being coerced into ending them prematurely. My stance had nothing to do with any religion or belief system. Frankly, I find the idea that some people were only there because they saw the issue at hand in terms of their soul or relationship with god rather disturbing, as it completely distorts the genuine, well founded concerns of most of the people who were there.

I don’t want to get wound up tonight so I’ll try to keep this brief. It has been a long, difficult afternoon. Before now, I have always tried to position myself on the fence when it comes to assisted suicide: people have a right to choose what to do with their lives, including ending them if they so wish. Yet at the end of the day, there is no getting around the fact that what happened today in Westminster is very dangerous indeed. Legalising suicide under the guise of ‘Assisted dying’ effectively makes it legal for one person to kill another. Like many disabled activists, I worry that, whatever safeguards are put in place, sooner or later this bill will lead to people with disabilities or severe medical conditions starting to feel coerced or obliged into taking their lives. That is why I went up to Westminster this afternoon to join the protest against it.

Consciously or unconsciously, what happened today opened a very dangerous gate. After all, the right to die is the right to kill, and all too soon I fear we’ll see some very vulnerable people being offered euthanasia as an option. However rigid or stringent the new guidelines will be, the danger is they will be gradually watered down so that eventually more and more people will be offered assisted dying as an option. Frankly, I wonder whether it could one say include conditions like Muscular Dystrophy: if so, might this bill have included the guys I grew up with at school? Could they potentially have been given the option to end their lives; and might they have felt obliged to do so for the sake of their parents?

Perhaps not, but nonetheless I fear what happened today potentially opened the gate to somewhere truly dark. It ultimately sends out a message that certain lives aren’t worth living and should be ended in an act of compassion. However noble those who back this bill may try to frame it, today we crossed an extremely dangerous, dark threshold.

I have written about the pilot Inn before. It’s a pub on the North Greenwich Peninsula, not far from the O2. It looks like it’s a couple of hundred years old, and is at the end of a terrace of four or five houses. I go past it fairly frequently, either on a bus or just in my powerchair. I must say, though, that it’s looking stranger and stranger, and more and more out of place: like the rest of east London, the Greenwich Peninsula is getting rapidly built up. It has changed enormously even since I moved down here. Countless blocks of upmarket flats have sprung up where there were once car parks for the arena. Yet, oddly, The Pilot Inn has been allowed to remain where it is, like some remnant of a time long gone. More than ever, it looks totally out of place, the surrounding tall buildings leaning in on it; yet somehow still seems to being where it is. What more fitting image could there be of modern London in general?

I still remember when these roads were new.
When this landscape seemed foreign, alien.
When this was a place for me to explore;
Stretching out in all directions like a vast labyrinth,
It’s concrete and tarmac so different from the green I was used to.

The people around me so distant and hostile.

Yet somehow the city has since shrunk.
And what seemed exotic is now familiar.
Paths which once begged to be explored are now well used.
And a metropolis which was once so vast and daunting
Now feels like home.

It’s people so welcoming and warm.

I have noted my thoughts on assisted suicide on here before. Broadly speaking, while I think that people should ultimately have a right to choose what to do with their lives, and this should include ending them, I share the concern of others that, should the upcoming bill become law, terminally ill and vulnerable people will feel coerced and pressured into taking the suicide option. This concern is obviously shared by many others in the disabled community. Watching the issue being reported on the evening news just now though, I have to say that I’m not happy that the opposition to this change in the law seems to be being championed by religious leaders or clergy. The BBC report showed various bishops etc saying why this bill was such a mistake, but my opposition to it has nothing to do with religion. You don’t have to believe in any imaginary creator-beings to worry about the problems and issues this law may cause. More to the point, such reporting simply reinforces the wholly baseless, unearned authority such religious leaders claim: they were not voted into their positions, nor do they possess any special academic qualifications, yet they claim a right to appear on the evening news bulletin to give their opinions on a rather critical issue. Their authority is derived from a few outdated, debunked myths, but by framing these people in such a way, such authority is perpetuated and reinforced. I’m surely not the only person to see that as quite screwed up.

I just want to note something which I’m now rather pleased about. You may remember, a few months ago I blogged about going back and re-inserting all the links into my old blog entries. I wasn’t pleased that all the entries I’ve written over the last twenty years didn’t have the links I originally put into them. Well, it has taken me quite a while, but I have finally got there: all the links have been restored. It was quite a slow process. I did a month at a time, working back through my archive, but at last all 240 months worth of entries have their links back. Naturally I might have missed a few – you know me – so I don’t think this arduous exercise is finished quite yet and I’ll keep at it, but frankly it feels great to know the links I used in all my old entries are back.

I’m sorry, but given my love for both Tolkien and my morning cuppa, this was simply too amusing for me not to nick.

Trust me, I can certainly relate!

If I can put my James Bond fan hat on briefly, I found this video interesting and worth flagging up. Did you know that Quentin Tarantino was considered to direct an adaptation of Casino Royale? He’s apparently quite a Bond fan, and after Pulp Fiction in 1994 was in the running to continue the series in the Brosnan era. According to this video, it would have been black and white, and starred Samuel L. Jackson as Felix Lieter. If you ask me, it sounds like it would have been awesome. Mind you, at the moment I daresay we’re going through such a James Bond drought that we can really do with more things like this: we really need a maverick director like Tarantino to get the franchise back on track post Daniel Craig, and to restore it to it’s usual cultural position. We haven’t seen a new Bond film in so long that the energy and excitement which they seem to bring to our culture is really starting to get missed.

I watched the first couple of episodes of The Listeners last night, and I think it’s worth flagging up. I seldom go in for new dramas like that, but I thought I would give it a try. To be honest I found it rather interesting: it’s about a group of people who can hear a strange sound which nobody else can. Obviously this can be read as a metaphor or allegory for some other minority, but the question is which. This group of individuals all begin hearing this odd noise, but have no idea anyone else can until they begin grouping together. What is the Beeb trying to tell us here? Who could this minority represent? Gay people? People with disabilities? In an era when just about everyone seems to be desperate to belong to one minority or another, such fiction seems quite timely.

I wouldn’t be able to justly call myself a Star Trek fan if I didn’t flag this new short film up today. In it, William Shatner at last returns to the role of Captain Kirk – or at least appears to. As explained in this Trekculture video, it’s a fantastic film by Otoy films called Unification, which blends together old and new footage and has loads of awesome Star Trek references. While it isn’t the full on, big screen, resurrection of Shatner’s Kirk we might like to see – well, I would anyway – it is fantastic to see what people can produce these days. Watching it, it may strike you as slightly sentimental, but as they did with Regeneration a year or so ago, it’s great to see these characters who we trekkies grew up with return in some way. As I wrote when I saw that film, it’s also amazing to see just how advanced such unofficial online fan films are becoming. Ultimately, though, it’s a very touching short film indeed, particularly if you’re a Star Trek fan.

Pretty much the first thing I came across on my Facebook after quite a long day out and about just now was this Huffington post report. Liz Truss is apparently now saying that the UK needs its own version of Donald Trump. “The former prime minister said she wanted to see a UK version of the president-elect’s Make America Great Again movement.” I’m sorry, but that really does defy belief: she was pretty much the shortest lived and most abjectly ruinous Prime Minister in British history, yet she seems to think that she still has the gravitas and authority to make such judgements. It’s as if she sees herself as some kind of great leader worthy of respect, rather than the epic mistake which history will record her to be. To make matters worse, any thinking person can see what an utter disaster Trump will be, not just for America but for the entire world. For Truss or anyone to say he is some sort of goal worth aspiring to is patently ridiculous, and just makes her look even more unhinged.

I just wanted to flag this up because it struck me as so ludicrous.

Staying with the public transport theme from yesterday, earlier I came across this report that the government wants to spend £1bn on bringing public transport in the rest of the country into line with London’s. If you ask me, it’s about time. These days, I’m used to being able to wheel on and off busses and trains without help. Public transport in the capital is far from perfect, of course, but it’s far better than that outside of it. For instance, whereas around here I’m used to busses having automatic wheelchair ramps, to the best of my knowledge, outside of London bus drivers still have to get out of their cabs to open the ramps manually. While that may only sound like something minor, believe me, when you’re faced with grumpy, reluctant bus drivers who see letting you on and off their bus as nothing more than a burden, having an automatic ramp which glides smoothly out to let you on without a fuss is a great relief. I really hope that busses across the country will now be brought up to the same standard. More to the point, it seems to me that, while London is used to getting massive new infrastructure projects like Crossrail, the rest of the country gets woefully left behind; perhaps this plan will go some way to resetting that imbalance.

I just got in from my usual afternoon trundle, and decided to watch this review of Gladiator 2 by Mark Kermode while I ate my late-afternoon snack. I’m not usually that big a fan of such sequels – I’d just assumed it was an attempt to revive a twenty-five year old franchise – but the way Kermode described it has won me around. Believe me, he makes it sound incredible: the film apparently involves colossal battles, space-monkeys and everything! Listening to the review is a treat in itself, but now I really want to go and watch the film.

I heard on the news this morning that Justin Welby has resigned and the so-called Church of England is now looking for a new leader. Well, I have a far better idea: wouldn’t this be a good opportunity to disband the church altogether? I’ve written on here before about how profoundly undemocratic and anachronistic I find it. It is a body which derives it’s authority from a set of outdated, thoroughly refuted myths; it’s members weren’t elected through any kind of public vote; yet the leadership of this church claims the right to intervene in our politics. To make matters worse, it is now clear that this organisation has been covering up child abuse within it’s ranks for decades. The church leadership obviously knew this abuse was happening but did nothing, pretending it was completely oblivious and innocent. In any other context, were this any other organisation, it’s leadership, including Welby, would be standing trial. Were this a supermarket chain, or a high street bank company, whose executive knowingly allowed it’s employees to abuse children over several decades but hushed it up, the scandal would be huge. The company would probably be broken up. Yet because it is a religious organisation it seems to be above the law, including those concerning child abuse. Does that not strike anyone else as utterly fucked up?! If we are indeed a modern, educated democracy, surely this is something we must outgrow.

The subject of assisted suicide has cropped up again today. Before now I have always tried to appear on the fence on the issue, unable to quite say whether I was for or against it. Yet, the truth is, the more I think about the notion, the more repugnant I find it. Of course, I’m not speaking from any form of religious or spiritual standpoint; I just feel that life is to be cherished and lived for as long as possible. If we only have one life to live, why would anyone want that finite existence to end sooner than it otherwise might? The world is full of so many awesome things, why would anyone want to die before experiencing as many of them as possible?

More to the point, legalising assistant suicide brings up a few hideous possibilities: roads so dark and dangerous we cannot risk going down them. As many others are pointing out, this bill may start us down a slippery slope which ends with people being coerced or encouraged to end their lives. People with disabilities might start to feel like a burden to others, and suicide might be presented to them as some kind of altruistic option. No matter how far fetched this scenario might seem, no matter how many safeguards are put in place, that is a risk we cannot take.  One step down this path opens the door to a plethora of hideous possibilities,which is why I stand (or sit) with any other disability rights activist worth their salt in opposing it. 

I swear I saw a woman wearing piedros on the tube yesterday evening. Piedros are a kind of special boot which my school friends and I were forced to wear, made specially for us by a guy who visited the physio department. They were very stiff, and were supposed to hold our feet in the right shape, rising high above the ankle. Yet the woman on the tube was clearly able bodied, and was wearing them along with a very short back dress and a cream-coloured blazer. Sat next to her boyfriend, she was obviously one of those fashionable people who think London exists simply to be seen in: they must have been going to some kind of event or party. She was obviously trying to be trendy, but her shoes were clearly the kind given to disabled kids, or at least resembled them very closely. Could piedros be in fashion? The irony of that would just be too hilarious!