Roland Chesters writes...
I have a confession to make. I was asked to write a piece to mark Disability Pride about a month ago. And I sat on it. I prevaricated. Because I didn’t know what to write. The concept of ‘disability’ and ‘pride’ was an alien one to me. July is Disability Pride month. But, for me, the two words sit very oddly together. I am not ‘proud’ of the fact that I live with a number of non-visible disabilities. It’s just who I am – or, more accurately, who I have become, as I was only first diagnosed 16 years ago. And please don’t give me all of that ‘you’re so courageous’, ‘you’re so brave’ – do I (did I) have a choice? In the disability world this is described as ‘inspirational porn’ - the idea that disabled people's otherwise ordinary activities should be considered extraordinary solely because of disability.
So, what do I have to be proud of?
Perhaps, like many people who become disabled later in life (I was 46) it meant having to figure out again who I was, what I was, what my goals were. It was a life interrupted. A (long) period of grieving for who I once was followed by excitement and anticipation of building a new me. And then the tedium of day-to-day life resumes. Can I be proud of that? Perhaps not, given that this experience is by no means unique to me. Perhaps I can be proud of speaking up and speaking out about living with a still hugely stigmatized condition: HIV and AIDS. Recent research by the Terrence Higgins Trust shows that just 30% of people say they are comfortable dating someone living with HIV and fewer than two in five (37%) being comfortable kissing someone living with HIV. This comes despite it being clear since the start of the epidemic that HIV can’t be passed on through kissing or any other day-to-day contact including sharing cutlery or holding hands. (https://www.tht.org.uk/news/public-attitudes-hiv-stuck-1980s). Can I be proud of that? Again, I am not the only one.
And so, I delayed. Waiting for inspiration. Hoping that something would happen before the end of July which will give me the spark to write this piece. And two days ago, that did happen.
My bit for the Commonwealth
Earlier this year I was commissioned to deliver disability awareness training to the organisation that is responsible for the recruitment, management and training of volunteers participating in the opening and closing ceremonies of the 2022 Commonwealth Games being held in Birmingham, UK. That organisation wanted to make sure that the opportunity to participate as a volunteer in this ‘once in a lifetime’ opportunity was made available to all. The range of reasonable adjustments presented by those wishing to be selected as volunteers was impressive and so the training I delivered was intensive and exhaustive – but fun!
That made my heart sing
As a result of having delivered this training I was invited to attend the final dress rehearsal for the Opening Ceremony at the Alexandra Stadium in Birmingham on Tuesday evening, just two days ago. I had no idea what to expect. By the time this piece is published the Opening Ceremony will have taken place and perhaps you will have been one of the many watching it on television and you too, like I was, will have been amazed and impressed by the spectacle unfolding before you. But for me, in that moment, at that time, I finally, finally, understood what Disability Pride stands for. Amongst the 2000 volunteers participating in that event – dancing, marshalling, moving equipment, selling merchandise – were quite a number of people with visible disabilities, clearly having the time of their lives. Being included. In exactly the same way that all the other volunteers were being included. And that moved me. That made my heart sing. That…that…that made me so very proud. So very Disability Proud.