Jason Baxter is 46 years old and has spinocerebellar ataxia type 2 (SCA2). Jason is one of many people who have experienced prejudice and accusations of being drunk, here he shares his story.
If anyone were to ask me what was ataxia felt like, the best way I think to describe it would be this: imagine you’ve been on a robust drinking session. You’re not quite at the falling face first into your kebab stage, but you are at the three steps forward, two back and one to the side stage. How does that feel? There you are.
A few years ago when I was 42, I received my diagnosis. I was still convincing myself that I could manage a demanding job and ataxia at the same time. I had given up driving, so I was using public transport to get to work – three hours there and three back. I was just using a walking stick at that stage and when I got tired, I got extra wobbly!
It was a summer afternoon and I was waiting for the bus home after work. The bus stop was close to work so I didn’t have far to go and I was alone. As the doors opened, I went to step on to the bus and had a particularly spectacular wobble. I had to grab hold of the bus door to keep from falling. When I had suitably composed myself, the bus driver told me that he didn’t allow drunk people on his bus.
I felt my face flush with embarrassment – the bus was fairly full of passengers and I could feel their pitying stares boring into me. I should have been angry and indignant. I should have wagged an irate finger at him. How dare this person who I have never met before accuse me of drunkenness? Then it dawned on me. That’s exactly how it would have appeared to him.
Fortunately, I am a friend of Ataxia UK, and they had sent me a little card explaining that I wasn’t drunk, I may show similar symptoms but actually, there’s a reason.
To his credit, once I had shown him the card, he couldn’t have been sorrier. He made sure I was seated before moving off and he apologised once more as I left.
Sadly, I am not alone. This kind of thing happens to people with ataxia over and over. They are refused service in pubs, they are not allowed into clubs and generally treated as though their problems lie in the bottom of a bottle instead of in their brains.
By sharing your story and getting the word ‘ataxia’ out there, we can raise awareness and prevent these misconceptions.