I have just nominated Sue Marsh (@suey2y) to be a torchbearer at the London Paralympic Games in 2012. When I first heard that LOCOG were looking for “people who have made a difference in their community and inspired or supported disabled people”, Sue was the first person who came to mind.
I first found Sue the way I find anything these days: on Twitter. Somebody linked to one of her blog posts, I can’t remember which. I found her writing sensitive, eloquent, thought-provoking. I followed her. A few months later, I helped her out with some research on disability benefits in Germany (short version: some things are better, some things are worse). Through Twitter, we have stayed in touch, and while I don’t read her blog religiously, chances are that if I see a link from her in my timeline I will click on it.
Sue suffers from a rare form of Crohn’s disease, a debilitating illness which can leave her incapable to move or eat, vomiting for hours, in unbearable pain for days. Strong painkillers take a lot of her energy but help her manage the pain; surgery can provide temporary relief – until it gets worse again.
Over the past 18 months, as budget cuts have begun to hit the most vulnerable, as the disabled have been demonised as “benefit scroungers”, as people on death’s door have been declared “fit for work”, Sue has been at the centre of The Broken of Britain campaign fighting for disabled rights. Her writing has touched thousands of disabled people, raised awareness of disability issues among those of us lucky enough to be able-bodied, and serves as a constant reminder of the importance of solidarity.
Perhaps the biggest lesson I have learned from Sue and the Broken of Britain is about the sheer diversity when it comes to disability. Our iconography for disabled people focuses on what we can see. A person in a wheelchair, a blind person with a white cane – these are the traditional symbols of the disabled in our society. Yet disability comes in so many more varieties than that, some visible and some not. Vision and hearing impairments, mobility issues, those are the forms of disability that we can easily identify. Chronic conditions like MS, CFS or Crohn’s disease are just as debilitating, but they don’t fit into our mental model of disability. One day a person is fine, the next they cannot move, and the day after they are fine again. Our brains seem to have a binary switch – your body either works or doesn’t; we find it hard to make allowances for variable conditions, bodies which work some of the time, unreliably. We find it even harder to deal with mental health conditions, which can be just as debilitating. Just because a person doesn’t conform to our expectations of disability does not mean that they are “faking it”, “scrounging”, or even “fit for work”.
Another lesson I have learned from Sue is how close you and I – the average able-bodied people – are to the precipice of disability. An accident that puts us in a wheelchair may be just around the corner. I may feel fine today, but that means nothing when it comes to what nightmare condition my body may develop tomorrow. Every day you live as an able-bodied person is a day you’ve been lucky and a day you should be thankful for. If simple humanity isn’t enough to make us want to care for the vulnerable in our society, to show solidarity and help people in need, then this awareness of our own fragility and mortality at least should point us in the right direction.
A final lesson: this one from Sue, Chris Grayling and the Paralympic Games. Odd combination, I know. It was Chris Grayling who said (Q286) to the Work and Pensions Committee earlier this year that with the proposed welfare and benefits reforms he was trying to address a situation where “a Paralympic athlete with a university degree has no obligation to look for a job”. This is, of course, cheap and lazy rhetoric. Yes, Britain has world class Paralympic athletes. Yes, they are incredibly inspiring, both to disabled people and to the able-bodied. Yet equating all “deserving” disabled people with Paralympic athletes in the public’s mind – which is precisely what Chris Grayling sought to do with his remarks – is deliberately deceptive. It ignores the diversity of conditions which can cause disability, denies disabled people their individuality, implies that those who are not breaking world records on a daily basis are somehow worth less. On the other hand, one of the weird and wonderful things about competitive sports for the disabled is the sheer complexity of the rules: because everyone’s condition is different, you have to find a way to more or less compare like with like. Unlike Chris Grayling, this system allows disabled to people to compete on a level playing field. We as a society, too, should be able to allow for that. We should treat the disabled with dignity and respect, as individuals, and give them the support they need to have a meaningful and fulfilling life as part of our society.
So when we watch the Paralympic Games next year, let’s celebrate the amazing achievements on the athletes – and let’s at the same time remember all those other disabled people out there. Each of them, in their own unique way, tries their best every day – to get through the day, to contribute to society, to achieve something amazing.