Meeting of the Parliament 22 March 2018
I echo members’ thanks to Johann Lamont for securing this important debate. I am grateful for the opportunity to speak in it. I love the fact that the gimmick for Down’s syndrome awareness week is to wear odd socks. It turns out that I have been marking Down’s syndrome awareness week every single day of the year.
We must recognise the importance of such events and of helping society to see past Down’s syndrome, as the wider narrative around the week goes. I will come to this year’s theme of employment, but I want to stay for a moment on the idea of getting society to see past Down’s syndrome. I have always seen great industry, creativity and compassion in every one of my friends and co-workers and the people with whom I am acquainted who have Down’s syndrome. They have a capacity for romance and great humour.
In this awareness week, we should all remember that those who live among us with Down’s—our neighbours and friends—represent a different kind of normal. However, society is rigged differently and does not recognise that different kind of normal, and the reason why we are here today is to challenge that.
From conception, the odds can be stacked against people with Down’s syndrome. To stray into a slightly sensitive area, I do not for a minute want to challenge a parent’s decision not to proceed with a pregnancy when Down’s is detected—that should always be their right—but that should not be the default assumption of medical staff who offer advice at the time. We need to equip medical staff with an understanding of the way to speak to parents at that difficult time of decision making and scotch the idea that Down’s is somehow a life sentence. I am grateful to my constituent Lynn Murray, who has done a lot of research and has worked with the medical profession on managing those conversations. We need to challenge stigma at every single stage of life for someone with Down’s; we must also challenge the assumptions that we have all paid into at some point through popular culture.
It is right that the theme of this year’s awareness week should be inclusion in employment, because the aspiration of every family with somebody affected by Down’s syndrome is independent living, and employment is the absolutely central pillar in the ability to live independently. With employment, people can have a social network, feelings of self-worth and fulfilment and financial independence. There are very few tenets of society to which we all aspire, but that is absolutely one. As an MSP for a constituency in our nation’s capital, I am proud of the many businesses and social enterprises that go out of their way to recruit not just people with Down’s syndrome but those with other learning difficulties. For many years, I worked alongside people in the Engine Shed, just up the hill from here, which was a great social enterprise that worked in particular with people with Down's syndrome.
For those with any learning difficulty in our society, a parlous postcode lottery is attached to support. Families sometimes do not get the support that they need to help their children who have Down’s syndrome through the transition that we have heard about and into employment, which is the theme of this year’s awareness week.
I again thank Johann Lamont for bringing the debate to the Parliament, as it is absolutely vital. It is also vital that we do not just mark Down’s syndrome once a year through the awareness week but that we keep it in our minds in everything that we do in the Parliament. As I said at the top of my remarks, having Down’s syndrome and living with it are just a different kind of normal.
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