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.