Service User Voice: Hubris is never far away

I think I’m going through my own version of a mid-life crisis. A few years ago, I signed up to Friends Reunited, and got in touch with a few old schoolmates. Almost without exception, they were unhappy although most of them seemed successful by our society’s standards, they felt that they hadn’t achieved anything significant in their lives – they felt alienated from their children, partners and colleagues. Their e-mails were full of self-doubt and regret (I did go to an all-boys school, so perhaps this was all to be expected).

At that time, I felt that my life crises had come early, and, having had to deal with life-threatening illness, disability, homelessness and family break-up simultaneously, I thought I’d learned some lessons, like coming to terms with my own mortality, making the most of any given situation and, most importantly, patience. The fact that I, living with severe disability, seemed more content with life than my (richer) able-bodied contemporaries seemed ironic. I even felt like giving myself a pat on the back.

Alongside the inevitable sense of loss, becoming physically disabled was like being one of those TV anthropologists who go to live with tribes in the rainforest: so this is what it’s like to have to use a wheelchair! I usually found it interesting, rather than offensive, that people’s reactions to me were now different. The fact that people with disabilities are excluded from many parts of everyday life, and often got a raw deal from the people who were meant to be helping them gave me something to fight for.

Hubris is never far away: right now, I’m becoming less patient. I resent the fact that I’m living on “disability time”, when everything takes at least twice as long to organise and complete, and every organisation assumes that I will fit in with their timelines for appointments, because I’ve got nothing better to do, have I?

I got even more annoyed when I found a quote on the Disability Rights Commission website by a transport journalist on the timescale for making the rail network accessible: “having got the 2020 deadline into law the disability Taliban are going to get self-righteous”

So now disability campaigners are comparable to sponsors of terrorism and enemies of diversity? Have we really been spending our time trying to impose a new orthodoxy? Or is this just my mid-life crisis?

 Simon Heng is a wheelchair user and is involved in user-led organisations