S4M-08971 Down’s Syndrome Awareness Week

The Deputy Presiding Officer (John Scott): The final item of business is a members’ business debate on motion S4M-08971, in the name of John Wilson, on Down’s syndrome awareness week 2014. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that 21 March 2014 is the UN World Down’s Syndrome Day that aims to raise awareness of the condition caused by extra material in chromosome 21; understands that Down’s syndrome is the most frequently recognised cause of learning disability; considers that World Down’s Syndrome Day and Down’s Syndrome Awareness Week, 17 to 23 March 2014, are opportunities for people throughout Scotland, including Central Scotland, to reflect on the value of people with learning difficulties in Scottish society; understands that Down’s Syndrome Scotland’s vision is that society fully accepts and includes people with Down’s syndrome; considers that the charity supports its members with Down’s syndrome to achieve their full potential; welcomes the Communication Skills Project currently run by Down’s Syndrome Scotland and being evaluated by the University of Strathclyde; understands that this pilot project aims to help children from 12 months to improve their communication skills and upskill parents in supporting their children’s speech and language, complementing speech and language therapy sessions; acknowledges the wide range of issues likely to affect people with Down’s syndrome at different stages in their lives, including screening, education, employment, independent living or dementia, and recognises the importance of early intervention to ensure the best quality of life for people with Down’s syndrome.

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Stewart Stevenson (Banffshire and Buchan Coast) (SNP): I add my congratulations to John Wilson on creating the opportunity for us to debate this important subject.

It is particularly interesting that, when I was a youngster, if someone was a Down’s child they were institutionalised or they stayed with their family; they were written off at the outset. The assumption was that there was nothing there worth worrying about. Now, in the modern age, we know that we have consistently underrated the potential of children with Down’s syndrome. Indeed, it is worth looking at the range of achievements of many with Down’s syndrome, which is probably nearly as great as it is for people without Down’s syndrome. There is considerable overlap. Many people with Down’s syndrome achieve at higher levels than many who have no measurable impairment of any kind, which is to be welcomed.

My mother was a visitor at the local psychiatric hospital, Stratheden hospital. Like many hospitals in the 1950s and 1960s, it had people in it who were there because they had been abandoned by their families, which included people with Down’s syndrome. Each fortnight my mother took a couple of people from Stratheden out for tea, one of whom was a Down’s syndrome patient. In the modern context “patient” is the wrong word, because being a patient means that you are being treated, whereas the reality was that the woman concerned had been dumped in an entirely inappropriate setting. We have to be very grateful for the changes that have meant that the way in which people with Down’s syndrome are treated is now different.

Another difference is that when my mother did that, 50 years ago, someone with Down’s syndrome might have reasonably expected to live into their 30s. Now very often they live into their 60s. That is great news, of course, but it can also be a source of worry that did not previously exist for parents. Children with Down’s syndrome are living beyond their parents’ lifespan and their parents quite properly have many concerns about their children’s ability to survive independently in the world after they have departed it. However, if we diagnose and support children with Down’s syndrome we can create an independent capability in them.

We have heard reference to people with Down’s syndrome acting. The earliest example of that that I remember was in an episode of “A Touch Of Frost”, the theme of which focused on society’s inappropriate view of the capabilities of someone with Down’s syndrome. I welcome the fact that the mainstream media is providing opportunities for people with Down’s syndrome to be part of theatre and also using theatre and television drama as a way of communicating widely to the world that Down’s syndrome is not a lifetime incapacitation.

There are issues that we still need to tak tent of. The English website on Down’s syndrome suggests that 18 health conditions need to be monitored carefully throughout the life of a person with Down’s syndrome.

Dr Milne has stolen my thunder about Aberdeen, so I will talk about Inverness instead. “Six Percent” is a combined book and photographic exhibition that Down’s Syndrome Scotland has developed in partnership with photographer Graham Miller. It is running in Inverness for most of this month. The exhibition has quotes from families and illustrates the full and rich life that people with Down’s syndrome can live.

I very much hope that we will all be able to go away from this debate with a better understanding of the potential of people with Down’s syndrome and a preparedness to help those who are affected by it.

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