Joe is 24 years old and from Essex. Joe has spinocerebellar ataxia type 1 (SCA1) and has had ataxic symptoms since 2011.
One day, Joe was wrongly assumed to be drunk due to his disorderly movements, no fault of his own, here he shares what happened that day.
“We moved to be near the seaside after I was diagnosed with ataxia. My mum had to find new clients, so I wanted to help her out. I went to the library to make some flyers and the lady inside the library was very kind. She kept coming over to me and asking if I was OK or needed anything – she could clearly see I didn’t look too well.
A little while later, I went outside for a moment and while out there, I was grabbed by the arm and taken down the steps of the library. I wasn’t allowed back in because I was presumed drunk. I tried to explain: ‘I’m not well, I’m not drunk. I’m making these leaflets for my mum – the lady hasn’t had a problem with it while I’ve been upstairs.’ But I wasn’t allowed back in the library because I seemed drunk.
There was no way for me to get home – I didn’t have any money on me. I needed to get a taxi because I wouldn’t have been able to get on a bus due to the step. I booked a taxi and luckily found some money when I got home.
That was a really, really upsetting day.
Before I used a wheelchair, public transport was difficult because nobody would automatically offer a seat. Nobody knew I actually had a condition.”
Living with a rare condition is challenging enough, let alone being told you’re drunk when you’re not. By raising awareness of ataxia, we can improve diagnosis rates and prevent misconceptions.