The One in Five Campaign

By Gordon Aikman

Bang! Two players collide, head-on, at speed. Wheelchair basketball is fast and ferocious. The players tear around the court, crash and are regularly thrown to the floor. I feel myself nudging my wheelchair closer and closer to the TV screen. Adrenaline coursing through my body, I am taken back to my childhood. For a second I am there on the court, screeching down the line, ready for a pass.

Knock, knock. “Hello.” I am rapidly returned to reality, as my carer arrives to take me to the loo.

As the Paralympic GB gold rush began, my admiration grew and grew, but I couldn’t help but feel frustrated and more disabled than ever. This is new. I don’t begrudge able-bodied people who walk, run or cycle past me in the street. I wonder, with a deep pang of guilt, why do I feel like this?

Sitting at home I am forced to confront how increasingly powerless I am over my own body, and how surprisingly tough it is to watch those who look and feel a bit like you, but are far more capable. I tell my limbs what to do but they rarely listen.

No amount of training can strengthen my muscles that have already wasted away. Men and woman smashing world records versus me zonked after eating breakfast. I know it is irrational, but I cannot help but feel like a failure.

While we can all be described as disabled, what that word means for different people varies immensely. There is no norm. And given one-fifth of the UK population has some sort of — visible or invisible — disability, those that ran, swam and cycled their way to victory are very much the exception.

Every four years the Paralympic Games shine a light on disability. That global profile offers a golden opportunity to inform and change attitudes. While we have come a long way from the days of exiling disabled people, it is hard to believe that it was 2004 before live coverage of the Paralympics was broadcast in the UK. Progress, but still a way to go.

So first, the positives. Recent years have witnessed a step change in the quantity of media coverage. With more than 120 hours of sport televised live from Rio (700 hours if you include online content), it was the biggest overseas broadcast in Paralympic — and Channel 4 — history. That is a lot of disability-positive screen time.

To deliver the programming a record number of disabled people were employed both on and off screen. About 58% of presenters were disabled. That should, of course, be a no-brainer. If you want people who understand disability, hire disabled people. Another welcome development was the 8pm prime-time billing for The Last Leg: Live from Rio, a cheeky and irreverent comedy chat show which brought the Paralympics to a record number of younger viewers.

Even if you missed the Paralympics, you would have struggled to avoid Channel 4’s trailer, We’re the Superhumans. The three-minute ad, shared extensively across social media, was viewed millions of times. For most this will have been their only interaction with the Games, so it really does matter. Set to the Sammy Davis Jr track Yes I Can, it showcases dozens of Paralympians in action who chant #YesICan throughout. Great . . . if only it were as simple as that.

It is not a lack of willpower standing between me and the 100 metres; it is the fact that my legs packed in when I was 29. The narrative implies disabled people can do anything if we just tried that bit harder, lazybones.

Launching the ad online, Channel 4 tell us: “There’s no such thing as can’t.” But the thing is, there is. Disability inevitably means accepting the can’ts. As motor neurone disease progressively paralyses my body, I must constantly adapt to life within ever greater limits. It is my reality. To pretend any different would get in the way of enjoying the things I can do.

And while branding Paralympians as “superhuman” might seem positive, it unhelpfully suggests success equals beating disability. It paints a partial, rose-tinted picture of what it really means to be disabled. The reality is all disabled people are forced to be superhuman — Paralympian or not — because of the inaccessible world and anti-disabled attitudes we must battle every day simply to exist. The taxi driver who refuses to pick you up because you are in a wheelchair. The restaurant up a flight of stairs. The pub with no accessible loo. Day after day, that takes record-breaking resilience.

It is time for a new narrative. We get the body we are given and no amount of positive thinking or screaming “Yes I can” will change that — boy, I wish it could.

Let’s stop portraying disability as something that has to be conquered. Let’s remember that it takes superhuman levels of strength to accept what you cannot do. And let’s start a new story where success comes in many shapes and forms, and where the onus is on society to tear down the barriers that disable us.

As for Tokyo 2020, forgive me, #NoICant — and that’s just fine.

Gordon Aikman is a motor neurone disease patient, campaigner and One in Five ambassador.

To donate to his campaign to fund research into a cure for MND, text MNDS85 £5 to 70070 or visit http://www.gordonsfightback.com

This article in The Sunday Times on 2 October 2016.

http://www.thetimes.co.uk/article/our-society-forces-disabled-people-to-be-superhuman-paralympian-or-not-crjmxtcpk

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Letter to Kevin Johnson below

One in Five

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