You are Not Your Disability, You Just Have a Disability

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"His disability is not his defining feature, he determines that. He is not the embodiment of the learning difficulty, he HAS it."

Words by Amy Gibson

I have the best relationship with my uncle. He is the most caring genuine man you could ever hope to meet. He can cheer you up in an instant, he is always on the other side of the phone when you need a chat, he loves spending time with the family and he never forgets anyone’s birthday and always comes through with a cracking card and present. Oh, and he also has Down’s syndrome.

Uncle David is my mum’s only sibling. At 18 months younger than her they have the typical close brother/sister relationship and are always bickering, but they have a deep rooted bond that no one could deny. For as long as I can remember he has always doted on my sister and I, he played with us, looked after us and laughed with us. We always thought he was the coolest grown up in the world, especially as kids, because he was the silliest adult we knew. He has achieved so much in his lifetime, and his enthusiasm for life is infectious. A few years ago he was feeling down because he was overweight, so, he joined slimming world, lost over 4 stone in two years, and won numerous awards in his club. To him things are simple, eating bad food made him feel bad, so he cut the bad stuff out and continues to be happy.

He also lives independently, he has his own two bedroom house in a friendly neighbourhood and is visited daily by support workers. It takes a lot for someone to have the confidence to move out after 30 odd years of living with their parents, but Uncle David took it all in his stride. He has only recently retired from work after 25 years working in a popular garage, and now he spends his time socialising with other adults with learning difficulties playing sport, swimming, cooking and day tripping.

So as you can see, my Uncle really is an inspiring man. That’s why it was so confusing to me at school when I would hear kids ‘insulting’ others by calling them a ‘downy’ because most of them could only dream of becoming half the man my Uncle was. But it’s not just direct insults that upset me. It is how little some people are educated in the correct way to approach people with learning difficulties. Even with the best intentions, people can put their foot in it and speak in a derogatory way because they don’t understand or realise it's wrong. For example, I often hear people say ‘He is down’s syndrome’. He IS NOT Down’s syndrome, he is a person just like the rest of us and he just so happens to have Down’s syndrome. His disability is not his defining feature, he determines that. He is not the embodiment of the learning difficulty, he HAS it. Just the same as someone has autism or has cancer, he has Down’s syndrome.

I often hear people day ‘He is down’s syndrome’. He IS NOT Down’s syndrome, he is a person just like the rest of us and he just so happens to have Down’s syndrome.

A couple of years ago, Coronation Street introduced a character played by Liam Bairstow, named Alex, and in one of the early episodes the corrie legend Ken Barlow said Alex ‘is’ Down’s syndrome. How that line made it through script writers, on to set and on to our screen at home is beyond me. I reached out to Coronation Street to explain my frustration and although I never got a response, I thankfully have never heard a similar mistake and I commend them for the otherwise realistic portrayal of an adult with learning difficulties today. It’s clear that the show has a kind nature.

Unlike positive representations, there are negative aspects of life that my Uncle has to face. Cold callers have targeted my Uncle because of his disability and tried to take money from him. Thankfully he has a very supportive family who have instilled into him to call us if he is ever made to feel uncomfortable, but sadly many adults with learning difficulties are not so lucky. Many do not have the support of their families and are left to fend for themselves leading to a number of them being taken advantage of by the wider community.

It is important that adults with all learning difficulties are supported in society. My Uncle is lucky in some way that his disability is visible because it isn’t for many others and that can lead to a lack of respect and understanding. We need to give people with learning difficulties a chance and realise that most are so open and honest about everything, their personality comes first and their disability second. As I have said, they are not their disability, it is just something they have.

To learn more, support, and read about inspiring people with Down’s syndrome click here.