Above, a film about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire.
Today’s the start of Learning Disability Week. What’s it like living with a learning disability? A few years ago, my sister, who has Fragile X syndrome, spotted the teenager next door embark on her first driving lesson. “I’ll never do that,” she quietly remarked. Quick as a flash, my mother replied: “You might not, but there’s plenty of other things you do brilliantly.”
Another time she asked why she had Fragile X syndrome. A plain, simple question and one that the rest of us asked for some time after her diagnosis (the answer: the genetic lottery). That was a tricky moment – it wasn’t that she required a literal explanation of the genetic make up that set her apart, but she was struggling to make sense of why there were certain things she found difficult to do and certain situations she felt uneasy in.
Unable to avoid some cliches, we explained that everyone’s different – wouldn’t the world be a boring place if we were all the same? – and talked about her amazing achievements which regularly leave us awe-struck, biodynamic farming among them.
If you’ve no experience of learning disability, you might assume that people like my sister potter along aimiably, existing in a smiley, hand-flapping, blissful state of ignorance, unable to articulate or appreciate the extent of their special needs.
The illuminating and moving film, above, about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire, lets the actors speak for themselves:
“I can’t be like Robin or Claire; I’m different.”
“It feels weird being with Down’s Syndrome.”
“To be honest, I feel quite privileged to be different; I wouldn’t want to be the same as everyone else really.”
The playwright, whose brother has a learning disability, recalls the days when those with learning disabilities were ushered away from mainstream society: “I was seven and he was nine when we were separated…my brother was tucked away in a sheltered workshop.. he would be a footnote..something to be forgotten.”
While grim institutional care is no longer the only option for people with learning disabilities, the horrific goings-on at the Winterbourne View care home and new Mencap research on disability hate crime are just two reminders of the massive problems that remain.
For me and my family, the awareness week that starts today means not only appreciating the scale of the challenge when it comes to creating a fairer society for the learning disabled – and demanding action – but celebrating the achievements of those we feel proud to call “different”.