So what IS disability?


A few years back, a friend of mine who lives in Paris explained to me that via the French medical system, women there can opt to abort the foetus if signs of disability are found. I listened to my friend’s rational explanation behind that thinking: sometimes parents don’t have the resources to cope with a disabled child, if you are a single parent (as she is) then it is even harder, and that she was fairly sure she would opt for an abortion if she found out that her child was disabled.

I listened to all of her very valid and practical points, somewhat conflicted. On the one hand, I wholeheartedly support a woman’s right to choose. That wasn’t in question. What sat uncomfortably however, was the implication, however slight, of a system of eugenics at play. Because my mother was the vice-principal in a school for the mentally handicapped, I had grown up around children with disabilities my whole life. Sometimes I resented it, as a child, because my mother’s attention was so wholly consumed by these children. When she started teaching at the school, in the late 1970s, in truth there wasn’t much expectation (from what I gather) of what learning capabilities they had. Although it wasn’t on the curriculum, my mum insisted on teaching them the fundamentals of Irish and French, as she wanted to challenge perceptions. Later, when I was in university, she asked me to help out with teaching singing to some of these children for a production of “Joseph and his Amazing Technicolor Dreamcoat”. I did it as a favour initially; but ended up being quite amazed at how fun, and how present these children were. It wasn’t perfect; but it was a hell of a lot better than I had expected, and I gained a huge amount from the experience, in terms of my understanding of disability.

Over the last couple of weeks, because of the Paralympics, I’ve remembered the conversation with my Parisian friend, and my own experiences of working and studying with people with disabilities. At university, I was lucky enough to share classes with a wonderful pianist called Stuart. Stuart was blind. But I remember being in class with him one day, when he pointed out to the lecturer that a Schumann lieder we were listening to was not, in fact, in the original key as the lecturer was saying, but a fourth lower. None of the rest of us had picked up on that. I remember (still at university) having the privilege to play in a concert that Evelyn Glennie was playing at. Glennie has been profoundly deaf since the age of 12, and was the first full-time solo percussionist in the world. I’ll never forget sitting in at her sound check with her telling the engineer “I can’t hear this” about one of her instruments. Apparently she has taught herself to “hear” with other parts of her body, but even so, the accuracy of tuning was astounding. But at the risk of painting all disabled people with the same saintly, “inspiring” brush, I also grew up with a neighbour who was profoundly deaf, who to this day is the same selfish monster he always was. I don’t attribute those tendencies to his deafness; that is his personality.

There’s a number of things that have been brought home over the Paralympics. First of all, I do not remember in my lifetime seeing so many disabled people featured in the media: it’s quite astounding. It is almost as if we have discovered a tribe of people that were there all along. And look! They have strops like us! (think Pistorius or, for the gold medal winner for best rant of the Paralympics in my opinion, Jody Cundy). They want to play sport!! And win!!! And, most surprisingly, they want all the things that we able-bodied people want: to be challenged, to engage in life with its myriad of colours and mazes that twist and turn.

Prior to the Paralympics, the fight that disabled people have on their hands with regards to the cuts, for example, have gone largely unnoticed by the media. After the Paralympics, I very much doubt that will be the case; and even during the Paralympics, public feeling on this was self-evident when George Osborne was subjected to booing from the crowd. I am of the opinion that those who booed were absolutely right to express their displeasure with the Chancellor; and that Locog made a grave error in inviting the poster-boy for the cuts to the Games to present medals. It was highly distasteful and hypocritical to have this figure present medals on the one hand; and on the other hand, during the same period, it emerged that disability benefit claimants will face a £71 a week fine for breaching back-to-work agreements. Although the argument for this is the tired old chestnut about it preventing “fraud”, the statistics show that benefit fraud is actually a very minor issue, and is really just being used as smoke-and-mirrors for the very much larger corporate fraud afoot (although that subject is probably best left to another blog). But my point is this: you cannot seek a photo-opportunity at the Paralympics one minute, while at the same time you are making significant cuts to their benefits on the other. The fact that this gained the media attention it did, and that it was the subject of many a heated discussion across the country marks a sea-change in attitude to disabled people in our society. The cloak of invisibility has dropped, and Britain has become interested in how this tribe of people live: what does it mean to navigate in a wheelchair across London? How does blade length affect running? What is the difference between a bionic limb and a silicon one?

One of my favourite programmes in the Paralympics has been “The Last Leg”, which exemplified to me how perception of “disability” has changed over the last number of weeks. For those of you who haven’t seen it – do. It was presented by Adam Hills, who is, for me, the stand-out presenting stars of the Paralympics. It was by far and away the most entertaining sports analysis show I have ever seen in my life; and it didn’t hurt that Hills was easy on the eye and charming to boot. He also has a prosthesis, which on the show was a source, but not THE source for comedy. The balance on this show was intriguing: on the one hand, it caused one to marvel at the sheer mental and physical fortitude to compete as a Paralympic athlete. But there were also reminders of the comedy of some moments, as when a guide pushed over the long distance runner he was supposed to be aiding. And their vulnerability, as evinced by one race I watched where a number of runners with cerebral palsy fell over. And the sheer joy that these Games were bringing, pretty much every time a Team GB athlete won. Or in the impromptu crowd performance of “YMCA”.  Before the Paralympics, the Guardian did an interview with Hills, where they asked whether comedy and disability could work. In answer to that, he said:

“With comedy and disability people go, ‘Ooh, where’s the line?’ There is no line – if you’re celebrating, then you won’t say the wrong thing. As long as it comes from the place of going ‘This is great’. And it is, it’s an amazing sporting event. I think because everyone behind the show loves the Paralympics, we get it, we’ve seen a lot of Paralympic sports and we’ve all gone beyond that [he puts on an insipid voice], ‘Oh isn’t this inspiring’ and instead gone, ‘This guy’s awesome. It’s about the sport really.”

He also went on to say that in his opinion that people can connect more to the Paralympians, because, sometimes unlike the Olympians, they all have a story. I think that is right; and I think it is only part of the reason these Games have been so vital for disabled people, and our society as a whole. Prior to the Paralympics, public perception of disabled people was very much about how we could help them. Now it is more about our story, as human beings: how they have helped us to see the possibilities in ourselves and the world at large. What would our world be like without a Professor Stephen Hawking? Or FDR? Or Beethoven? Or Byron? Or Sarah Bernhardt? Or Einstein? Or Tanni Grey-Thompson? Or Edison? Or Christy Brown? Or Evelyn Glennie? The list goes on; but it is clear that a society where everyone is physically and mentally perfect, and a great and inclusive society are two very different things.

I came back from Ireland last Sunday: I’d had a very bad morning, which culminated in being fined for excess baggage by a well-known budget airline. I was feeling very sorry for myself; and had got on a coach to Stratford. Suddenly, a Dutch extreme sit-skiing athlete arrived, and started discussing with the coach driver about getting on to the coach. There were no ramps or lifts for him to get on; so he turned around to the driver and said “Well, you will have to carry me on then”. It was said in a pragmatic, non-judgemental way, and as the coach driver and a colleague carried him on, the athlete made light of it by making jokes about his weight, and his chair. Suddenly my morning paled into insignificance; and a ray of stoical sunshine embraced me.


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