Meeting of the Parliament 22 March 2018
Nobody could fail to be moved by the video that was released earlier this week of 50 mums doing carpool karaoke with their precious children. They were full of life and fun, singing along by lip syncing or using Makaton. That video gives a little glimpse into families with Down’s syndrome—the enthusiasm and laughter, and the tears and frustrations. It shows the reason why world Down’s syndrome day is so important, which is that it teaches the rest of us a little bit more about Down’s syndrome and all that comes with it.
Direct experience makes all the difference in the world. Jamie McCallum, an individual who helped to create that video and whose daughter Rosie was born with Down’s syndrome five years ago, wrote that that experience transported him
“from spouting liberal platitudes on the periphery to centre-stage first-hand experience of the major shifts against society’s most vulnerable in recent years.”
That is the significance of Down’s syndrome day. It gives parents a platform to talk about the reality.
Over the past few decades, there have been huge changes. In the 1970s, when my uncle was born with Down’s syndrome, my grandfather was told not to worry because there were places that would take my uncle, so he did not need to put up with him. That was only 40 years ago. We have gone from a situation in which people with Down’s syndrome had a life sentence in an institution to their now living very full lives. The hashtag for the video of 15 mums doing carpool karaoke was #wouldntchangeathing. That is so true. My uncle celebrated his 50th birthday last year—he has just passed his 51st. Life expectancy was probably into the mid-20s 40 years ago. Now people are expected to live to 60 and beyond. At the turn of the century—in the 1900s—life expectancy was nine years. Huge progress has been made.
Attending my uncle’s 50th birthday party, which Alexander Stewart was also at, was incredible fun, as is just spending time with my uncle and his friends, who also have Down’s syndrome. They are unpretentious and happy, and could teach us so much about love and about care.
It is not always happy, but despite that, 97 per cent of families who have a family member with Down’s syndrome say that they are far happier for having the condition in their lives. That is why—and I say this very carefully—it is heart-breaking that the figure for terminations of babies with Down’s syndrome is 94 per cent. To quote Jamie again, that means that
“94% of people are opting out of something that has a 97% chance of making them happier.”
There is so much more work to do in raising awareness of what life is really like with Down’s syndrome. People do not suffer it: people have Down’s syndrome. We need to improve counselling and guidance for parents who face that difficult choice—and I do not underestimate the difficulty of the choice—and then support parents and families and people with Down’s syndrome through all the ups and downs, the highs and lows, and the opportunities and challenges.
We think that we are wise, normal and fine, yet we are shamed by people who are happier, more loving and arguably more normal than those of us who work and strive and stress about absolute trivia. My uncle is always ready with a smile and a handshake—often while the rest of us cringe, wanting the ground to swallow us up—as he goes up to thank the staff at a restaurant or whatever for their service. He does not believe that there can be anything bad in anybody in this world. That is a far more normal state to be in than the normal that we claim.
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