I Won’t Let the Sun Go Down on Me - A Volunteer's reflection on Disability Pride

The view from behind a manual wheelchair user on a beach, looking out towards a dusky, orange sky over the sea..

It’s Disability Pride Month, so I thought I would share my story as a disabled person to explain what Disability Pride means to me. I’m 31 years young and live with a progressive neurological condition called Friedreich's ataxia (a bit of a mouthful, don’t you think?). The condition affects nearly every part of me; I’m a full-time wheelchair user and cardiac patient and have an un-coordinated appearance. It is hard to live with my condition and all it entails, but I absolutely love life! I’ve been a full-time wheelchair user since 2017 and in that time, I’ve achieved so much to be proud of! Of course, at the time of my diagnosis, the plan had been to always be on two feet; I’d never thought I’d be on four wheels instead. I remember my 5-year-old stepson turning to my sister and asking, ‘Do you wish Ashy could walk?’ You might think this was a simple question with a simple answer, but my sister’s response went something like, ‘Well, yeah, but I know he will do anything and everything for you regardless of whether he’s in a wheelchair!’. She recognised that disability doesn’t define me, or anyone -- and nor should it. I might seem a tad too positive and upbeat considering the nature of my disabilities, and you might be wondering whether I feel the way I do about being a disabled person. If that’s the case, may I share with you a little phrase that my Mum used to say, ‘Smile, and the world smiles with you. Cry, and you cry alone!’. I think there’s a lot that can be taken from that phrase.

Of course, we all have moments where we encounter difficulties that others don’t have or don’t even realise that we might face. We must acknowledge the obstacles faced by disabled people that are created and sustained by the society, we live in - poor wheelchair access for example. Instead of feeling sorry for a disabled person, we should always try to understand the ways in which they might attempt to challenge any difficulties they might encounter. While I’d be lying if I said I’m much happier for being in a wheelchair, or satisfied to have stopped driving. I manage to keep my head up by remembering how fortunate I’ve been, and still am, instead of dwelling on the past. To quote Nik Kershaw’s 1980’s hit I Won’t Let the Sun Go Down on Me -- and nor should I! - Written by an Equal Lives Volunteer