I've spoken before about how being a Down's dad has, at times, elevated me to superstar status, for people who think it's the job I was cut out to do. Very kind of them it is and very good for the ego.
But consider this. A friend of mine, Catriona, has a daughter with Rett Syndrome. Rett Syndrome is the Cinderella to Down's Syndrome. Catriona hasn't been invited on the media recently. It's nowhere near as sexy for reporters. What's that all about? We both have a disabled child, but somehow Stan's of more "currency". (A recent journalist request asked for conditions that "aren't too rare". Quaint.)
But Catriona writes a fantastic blog. After a recent post on Facebook, a couple of people came on and said they find her inspiring. I talked to her, away from the glare of her Facebook wall, and we both agreed that the word makes us feel uncomfortable.
We were dealt this hand and we get on with it in our own way. For me, this includes writing this blog, thumping the table on Sky News and making sure that Stan has a great life, included wherever possible.
I was approached in the park a few months ago by a woman who said that she'd seen me in the pool with Stan and how she thought I was a great Dad. Why? Because Stan has Down's? I could have been offended but wasn't because I see what she was trying to do. But, for all she knows, I could be serial killer on the side. Catriona and I didn't ask to be inspiring. We just do what we do and there are many parents of children (and adults) with learning disabilities who keep battling away. And that's why I wrote the Daily Mirror online article about why Rion Holcombe's success shouldn't be described as "heartwarming."
There are exceptions. Speaking to Catriona, she says: “I am very happy indeed if professionals (therapists, teachers, social workers and others), who read what we write about our children, feel inspired to do a better job, as a result of understanding better children like ours and the families who love them. That kind of “inspired” is good!”
Talking of teachers; at Stan's school recently, I fulfilled my role as governor and attended the Xmas term awards ceremony. It was fantastic and a good chance to see how the teachers interact with the students. Many awards, including high GCSE marks, were handed out. But I stopped short of calling it inspiring because it was far more important than that. It wasn't heartwarming, it can't be described as: "didn't they try hard". It was just what these young people should be doing. It was a rattling good night out, celebrating richly-deserved success.
Catriona tells me: “The problem I have with the word 'inspiring' is that it makes me feel 'other'; people are creating distance between us and themselves. This life could happen to anyone; it's not just for 'special' people.”
So I won't be calling Catriona "inspiring". She's fantastic of course, but she's motivated in getting the right things for her daughter, Amy.
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