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.

One thought on “Telling our own Stories

  1. It’s just as Ricky Gervais said ( with whom I tend to agree on most aspects of modern day philosophy, with the exception of his atheism.) ‘ some folks like to have their lives televised warts and all like an open wound for notoriety and profit etc. Andy wharhol gone mad.

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