25th September – today – is International Ataxia Awareness Day. I don’t blame you for not already knowing that if that’s news to you. Until I read about it on social media, I didn’t know either. I knew there was an awareness day but not when. Not a big deal, you may say, you can’t remember all the awareness days. Only… I have ataxia. No excuses, right?
Yesterday, I woke up with a bad feeling. I got up, dressed, washed, all on auto-pilot. Doing things automatically with no real awareness is a horrible feeling for anybody but when you have a physical disability too and have to give extra care to where you are going and how you are moving, being so disconnected from your own body can be quite scary.
Over the summer I have experienced a whole lot of ignorance towards disabled people and disability in general. Some of this was down to people simply not being aware of disability, some to deliberate ignorance and the misguided belief still held by many that a disability somehow makes people less worthy of a decent life, some to the forgetfulness of those not directly affected by disability and the rest down to people who think they have the right to decide what is best for anyone with a disability.
This picture dropped onto my news feed a few days ago and I was shocked by some of the comments that followed. One particularly ignorant gem read ‘…they park to allow other cars through otherwise everyone’s stuck, there is always access on another pavement.’ Um … no. All over Britain, dropped kerbs remain an alien concept
Yesterday I took delivery of these pretty babies and I’m so excited. I’ve been an athletics fan since I was tiny. I’ve always watched the IAAF World Championships and promised myself that one day I’d be there.
Not long after I started this blog I wrote about joining the local group of Ataxia UK. For me, it was a big step considering I’d previously avoided similar ‘support’ groups. I’ve quickly got more involved with the group and the charity as a whole and am doing more than I thought I would. For me, it’s not just about raising money to help others – it gives me something constructive to do and I feel like my efforts are actually being valued.
Britain gets furious and then just gets on with it. Much like me in that respect. I get angry and stamp my tiny size 3s if I feel people have treated me unfairly just because of my disability and I use this platform to share my feelings with the world – whether you want me to or not. There isn’t much for me to be thrilled about but one thing for me to look forward to is my upcoming wedding next year. Now, don’t get me wrong, the whole thing has already caused more tears and tantrums than it needed to.