HBD Dad

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.

Riddles in the Dark

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 am (very little) potential

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.

Telling our own Stories

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.

Back in time for a Reunion

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.

Minspeak

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.