James and Adam — and a world with Down’s syndrome
Today, the World Down Syndrome Congress gets underway in Glasgow. It’s the first time the triennial event has been held in the UK for 32 years. The Congress offers an unmissable opportunity to join the worldwide Down’s syndrome community for three days of discussion, debate and celebration.
For people in Scotland, it’s a once in a lifetime opportunity to take part in the Congress. Fitting then, that it will be opened by John Swinney, Deputy First Minister. Crucially the Congress will showcase the potential of people with Down’s Syndrome to thrive and achieve, something we expect for any of our fellow citizens. The chance, as one parent said to me recently of his son, to have the life he wants.
When I was growing up in the 60s and 70s, the glimpse we had into the world of Down’s syndrome was fleeting. We didn’t really know what it was and no one thought it necessary to explain. When we encountered children with Down’s syndrome, we remarked in hushed tones that they looked odd and didn’t talk like us. But we were not to stare. That was rude and unkind.
At worst they were ‘mongs’, a frequent term of abuse in the school playground even though there wasn’t a child with Down’s syndrome to be seen there. And they were ‘window lickers’, to be cruelly imitated by contorting our faces.
Later I was to encounter the world of disability in a very different and more enlightened way when I became immersed in equality politics in the 80s. Yet learning disability, including Down’s syndrome, was largely absent from that world.
Remarkably, it wasn’t until I was in my 40s, that I met the world of Down’s syndrome head-on, first through my husband’s work as a community-based support worker with people with learning disabilities and later, coincidentally, in my work as chief executive at the Scottish Commission for Learning Disability.
In my own job especially, Down’s syndrome has become very much part of everyday life. And my life’s better off for it. I’ve met countless people with Down’s syndrome, but two stories stand out for me more than any others, perhaps because the contrasting fortunes involved in them shed light on the change we still need to be.
James was a man with Down’s syndrome in his late 50s when I first met him. My husband worked with him on a one to one basis twice a week. James had grown up in an impoverished family in Craigmillar in Edinburgh. The youngest of eight children, he somehow survived them all.
Unlike many of his generation, James never went to live in an institution. He stayed with his mum and dad until they died and they made his brother promise that he wouldn’t be sent to one after. Only right at the end, after his brother, who also had learning disabilities, died, did James spend the last couple of years of his life in residential care.
In a curious way, I grew to be unshakably fond of James. He would visit our house with Allan most weeks and I loved his stubborn and mischievous nature. James had a point of view and you definitely knew what it was, not least because it was invariably expressed pretty colourfully. He made me laugh.
There’s a painting of James hanging in our hallway. It’s not actually of him, but such was the likeness for Allan and me when we came across it on a Paris street market that we had to buy it. James died nearly 10 years ago. He was 60, and as is especially common for people with Down’s syndrome, he had developed dementia.
I’m glad James’ face beams down at us every day because he’s worth remembering. He didn’t have the worst life and lived longer than many of his generation with Down’s syndrome. But it could have been so much better. And the changes which happened in social care provision in the latter part of it, for all their good intention, didn’t necessarily improve things for him.
Adam is a couple of generations younger than James. He’s a dance artist and I first met him when the Scottish Commission for Learning Disability developed a partnership with the RSA, the Royal Society of Arts, Manufacturing and Commerce to create six lifetime fellowships for people with learning disabilities. Adam was one of the recipients.
Because I stayed clear of the selection process I didn’t hear about Adam until the video footage for the awards was sent to me less than a week before a ceremony to celebrate the fellowships. Our ambition with the project was to bust a myth and build a bridge, between an organisation which prides itself on being at the forefront of intellectual innovation, and the world of intellectual disability.
Adam’s words in the video captured the very essence of why we’d done it. Describing what it felt like to win the fellowship, Adam said it made him feel ‘alive, able to stand on his own two feet and important for once.’ He ‘felt the sun on his face and held his head high.’
I listened to Adam’s words sitting in my study, the door open to the hallway as James looked on. And I shed a tear for both of them. For opportunities lost and won. For a life that might have been and a life that still had so much potential. Adam is now living his dream of being a choreographer, touring with Indepen-dance as far afield as the Far East.
The world is changing for people with Down’s syndrome. They are living longer, enjoying fuller lives and breaking barriers. And yet, as a society, we still fall into the trap of focusing on what isn’t possible rather than what is. That’s the experience not just of people with Down’s syndrome, but of their parents and families too. And in some countries, the advance of science has led to a world almost without Down’s syndrome.
The World Down Syndrome Congress is a chance to think about the world with Down’s syndrome. A better world — where doors than open rather than close, where lives flourish rather than diminish.
Whatever your connection to Down’s syndrome — personal or professional — it will be worth following what’s happening at the Congress over the next three days.