What We Mean When We Talk About Disability
I wrote this for the now-defunct Malcontent. Article in full below.
As a society, we are unwilling to talk about disability. Recent research from Scope shows that two thirds of UK adults find it awkward just to talk to someone with a disability, which doesn’t even account for talking about the nature of disabilities or the ways in which they impact the person or society.
Facing this head on last week was Ste Walker, a man with Crohn’s disease. Posting a ‘long rant’ on Facebook, Ste’s outward appearance of ‘normality’, coupled with a coherent and considered description of his disability and how it affects him, could spearhead a new movement in disability rights and recognition.
By offering his friends (and, unintentionally, the entire internet) an intimate look into the daily battles faced when at war with your own body, Ste has demystified one of the final dark secrets of our society. By being frank, and grounding his issues in reality – such as being judged for using disabled parking or toilets – issues surrounding long term illness have been shown in all their gritty, ugly, mundane reality.
It is a poor reflection, in the 21st century, where we still view disability with such a limited scope. Whilst 1 in 20 children are disabled, this increases to 1 in 5 working age adults. Disability is more often than not something that happens, rather than something one is born with. Less than 8% of disabled people require a wheelchair; the majority of people with disabilities do not need a visible aid that ‘proves’ their disability. This means there are around 8.7 million people living with invisible disabilities in the UK.
Much like the rhetoric of the Elizabethan poor laws, our societal perspective on empathising with people with disabilities does not extend much further than ‘deserving’ and ‘undeserving.’ Despite figures suggesting that more benefits are left unclaimed than fraudulently claimed, the media offers a toxic narrative in which people fake disabilities, or those that have them are taking advantage of the system, cutting money from more deserving poor.
Yet while attitudes remain rooted in the past, people with disabilities are facing some of the toughest challenges in the past couple of decades. Not only under scrutiny by the controversial and toxic fit-to-work assessments, people are policing other people’s abilities, witch-hunting their neighbours, whilst the UN is investigating the government for human rights abuses against people with disabilities.
The rights of people with disabilities are all too often kicked about like a political football, the realities of living with disabilities are forgotten about; side-lined as if they were inconsequential issues. As Ste brings to the forefront, people with disabilities are people like anyone else: unique, with their own needs.
I grew up in the shadow of disability. Stroke is the largest cause of complex disability, and my Dad had a major stroke a couple of years before I was born. My Dad is fantastic, but the past couple of decades have seen him not only fighting against medical problems and occasional mobility issues, but fighting against his own mind and memories as well.
The easiest way to understand the effects of a stroke is by using an analogy of a bucket of water.
Imagine the human brain as a bucket of water. Everyone carries their bucket around quite happily. Sometimes it slops over the side, sometimes it’s a bit heavy, but mostly you carry on fine.
With a stroke, you still have most of the water in your bucket, but suddenly your bucket has a whole bunch of holes in. In my Dad’s case, 30% of his brain is dead mass – 30% of his bucket is holes.
Not only is a stroke survivor trying to carry their buckets (often with less strength in one side of their body) but they’re trying to stop up all the holes and keep the water in.
All the while, people are asking them why they aren’t working, or why are they using the disabled toilets. All the while, they are remembering a time they did not have holes in their buckets.
Strokes are, by far, not the only cause of difficulty or disability. It just so happens to be the most familiar to me, and a pertinent example. Each stroke affects a person differently. Some people are able to regain physical ability easily, others may never be able to use one side of their body ever again. Each brain and each body is unique, and as such we ought to acknowledge the individuality of lived disabled experience.
As a society we favour stories of strength in adversity, or against the odds struggles. The papers inform us about lazy benefits claimants, or brave souls battling the odds. The daily grind of just getting on, of hospital appointments and prescription medication, of living another day at war with your body and mind, just does not feature.
We owe it to people of all abilities to reject this toxic and narrow view of disability. In normalising the lived experiences of people with disabilities, we offer a chance to reclaim humanity. In offering our understanding, we are resisting the media’s attempts to vilify the disabled. In replacing our judgement with compassion, we are improving ourselves as citizens of the world.
It is often quoted that a society ought to be judged by the treatment of its weakest citizens. Implying that working harder to live a ‘normal life’ is a weakness is wrong and outdated. What if we instead judged a society on the way it elevates and assists those who have different challenges to tackle