Today I’d like to wish my dad a very happy birthday. Complete nonse that I am, though, I totally forgot about it, and it took me a few moments to twig why dad was listing so many things he had received from my brothers in our (currently) daily webcam chat. I hope he has an excellent day all the same. Recent events have made it clear how dear him (and mum) are to me.
That means, though, that tomorrow would have been Lyn’s sixtieth. To be honest I feel rather down about it: These days, I try to keep my spirits up, but thinking about all the excellent Twenty-Firsts of May we had over the last twelve years won’t make that easy. Either way I’ll probably raise a glass to both dad and Lyn this evening.
Happy birthday Dad.
It might be slightly long (45 mins), but if you want a treat, especially if you’re a Tolkien fan, go here. Andy Serkis recently recorded a reading of The Hobbit from end to end for charity. To listen to him reading the pivotal chapter, Riddles In The Dark, complete with his Gollum voice, is an absolute pleasure. For a moment I felt like I was nine again, tucked under a warm duvet, listening to my dad read the same chapter.
”What has it got in it’s pocketses?”
I have probably just watched one of the worst, most nauseating, most infuriating films I have ever seen. Mucking around on Facebook as usual earlier, I came across a poster for a film called I Am Potential, flagged up by Can-Do Musos. They’re an organisation for musicians with disabilities, which L had links to. Curious, I thought I’d check it out, and found it on Amazon Prime.
What I found myself watching, however, was staggeringly crap. It’s about a disabled young man in the deep south; blind and a wheelchair user, he finds he has a talent for music, teaching himself to play the piano and then the trumpet. What follows is a nauseatingly saccharine American family drama: we see him growing up and the pervails his family goes through. His dad works in an office, which is drawn straight from a cartoon, complete with a big bad one-dimensional boss. We see all the sacrifices they go through as he grows up, nurturing his talent. We get virtually every cliche and stereotype hurled at us – I swear I can pull better writing out of my arse.
Then, to cap it off, the guy decides he wants to be in his school marching band, or rather, he is told he can’t be in the ordinary school band if he hasn’t been in the marching band first, or some meaningless reason. The problem is, he can’t wheel his chair and play his trumpet at the same time. This causes the main moment of tension in the film, before, at the last moment, his dad quits his job, steps in, and pushes his son in the formation. We then see them both practicing and performing as part of the marching band, as though it was some great boundary-breaking achievement, when in reality any real disabled musician would probably be inconsolably embarrassed at having to be pushed around a field by their dad like that.
I know I probably shouldn’t be so critical about what is probably a children’s film, but as a piece of disability representation, surely we can do better than this cheesy, cliche-strewn shyte.
This afternoon I became aware of a phenomenon which I’m not sure I like at all. I suppose I’d known about it vaguely for a while, but had not focussed any attention onto it enough to get angry about it. Parents with children who have cerebral palsy seem to have started to use their kids to gain social media cache, branding theirselves ‘parents with cerebral palsy’ as a sort of marketing ploy. Ted Shires explains it fairly eloquently here. As he puts it, he is hacked off at Twitter users describing theirselves as ‘cerebral palsy parents’, as if that was the most important detail about their child, and as if they were the ones bearing the burden of cp. They seem to be using the fact their child is disabled to stand out in social media, which, like Ted, I find pretty galling. As he puts it, ”Cerebral Palsy is our burden, not yours!”
Shortly after watching Ted’s vlog, I stumbled upon the Youtube channel of a lady in the States which seemed to confirm everything he was talking about. Tamara Weeks makes videos depicting the daily life of her teenage daughter, who seems to have fairly severe cp and profound learning difficulties. After watching a few of her videos, I must say I was appalled: the young woman was being treated almost like a pet, or exhibit in a zoo. They went into quite some detail about her daily routine, showing her being dressed, washed, having her teeth brushed etc, as if this person was something to be marvelled over. I was horrified.
Let me put it this way: over the years I have written quite a lot on my blog about what I get up to. I think it is important that I tell people what life is like for a guy with cp, exhibitionist that I am. But what if it wasn’t me writing my blog, but my Mum or Dad? What if they described everything I had been up to and how I was feeling? The dominant voice would be theirs, and I would effectively become no more than a character in someone else’s drama. People with disabilities need to tell their own stories, however they can, not have stories told about them. Otherwise we become puppets, pushed and pulled about like that poor young lady in America.
I know I shouldn’t just flag up random Youtube videos, but there is a moment in this at just after the 4:15 mark which is simply awesome. Zark knows how he managed it, but somme random American guy got the cast of Back To The Future together for a Zoom meeting, and the result is frankly incredible. They clearly get along, exchanging banter and stories. They even re-perform some of the script at one point. The result is nostalgic and funny, and frankly has made my day.
The speech app I use on my Ipad is Proloquo2go, a very kind gift from the guys I work with at school. It’s quite an advanced app, as far as such things go: it is a Minspeak-based system, but also has an ordinary qwerty keyboard mode which I use. For those who don’t know, Minspeak is a symbol-based system where you select combinations of symbols to get the device to say words or sentences. I’ve never got into it, but I’ve had friends/acquaintances who swear by it, and say it’s a far quicker form of AAC.
A few days ago, then, I began wondering whether it was worth giving it a go. After all, Proloquo2go always boots up with the symbol screen, and I have to deliberately switch to qwerty. Having always typed ‘normally’, can I now learn a new system? How hard can it be? Might I indeed begin to ‘talk’ more quickly? Having watched a couple of Youtube videos about it, I must admit I’m curious. I’ll now sit down and fiddle with my Ipad, and see if I can get it to say anything. After all, in the current lock-down circumstances, teaching myself a new skill seems like a good idea.
I stopped watching PMQs a while ago, but if the reports of Kier Starmer’s performance yesterday are true, I may start watching it again.