13th May 2021
Dear Member of the Scottish Parliament,
My name is Finlay. I recently became 18 and I was born with an extra chromosome.
You must be so excited about becoming an MSP. Well done to you all. Those of you who are new, might also feel a bit anxious by everything in front of you. That’s probably good, as it means you are aware of the many challenges we face.
I wanted to let you know that I have a good life. But recently, I’ve realised that not everyone has a good life and I’ve also realised that my own life is limited, despite the kindness and support of my family and my friends.
I would like you to help me have a full life, not just a good one. Here’s what you need to know.
I have three sisters and a big brother. It turns out that I’m not likely to live as long as them. In fact, compared to them I may die 20 years before they do. That can’t be right.
What’s worse is that the things that are likely to end my life early are mostly, if not entirely, preventable.
My friend Megan, who also has an extra chromosome, actually has an even higher risk of dying early just because she is a woman. That can’t be right.
I’d like you to help me (and Megan) live longer by supporting our efforts to change the way people think about us. We especially want people in positions of power, and people who make critical decisions about us, to see us for our potential and not be prejudiced or blinkered about us because we have an extra chromosome.
The past 12–14 months have been tough. I hope you and your families have been ok.
My friends with Down’s syndrome have had a really, really tough time. We were asked to shield last year after it was found out that we were ten times more likely to die from COVID if we caught the virus. Many of us are now getting the vaccine but lots of us were not identified on local lists. That can’t be right.
What I would like you to do is to help make us more visible, please.
Please help us to become more visible in local health systems and encourage everyone to see us and not our disability. It can’t be right that we don’t have equal access to good health.
Please help us to become more visible with GPs and for all health professionals to identify and treat our health issues early. There’s a thing called ‘diagnostic overshadowing’ when doctors and clinicians think that our issues are because of our disability and fail to see our health issue. Please help us get rid of diagnostic overshadowing.
There are so many other things we need to do and I will be in touch with you about them over the next five years. However, making us more visible and recognising us for our potential, would be a good start.
As you take your oath today in the Parliament, make sure you enjoy your achievement but please remember that I got in touch with you today. I think it’s great that you are taking your oath during Scottish Learning Disability Week.
Please help me and everyone living with an extra chromosome to live a full life.
Please make us more visible in every aspect of Scottish life.
If you want to find out more then get in touch with my dad at firstname.lastname@example.org or give him a call on 0300 030 2121.
Finlay lives with his family in Cumbernauld. His mum works for the NHS and his dad is Chief Executive of Down’s Syndrome Scotland and he is also Chair of the Scottish Commission for People with a Learning Disability. Dad wrote this letter for Finlay and all his friends.