Who the HellAre the Disabled?
The impact of COVID-19 has made it starkly clear to those who live with disability that the imposed barriers of societal organisation make them disabled, explains Penny Pepper
In the early days, I watched every Government COVID-19 announcement and realised there were new labels placed upon me and millions of others.
The sick, the elderly, the disabled… the vulnerable. What an interminable hollow mantra of pseudo-caring.
So, I’m more vulnerable – and disabled people feature too high in the COVID-19 death tally. Why? Answers may lay outside the obvious mainstream thinking.
The first question is: who the hell are these disabled?
There’s a likelihood of every human being experiencing impairment and perhaps disability in their lifetime (yes, they are different states), but you wouldn’t know it from our presence in mainstream life.
Official Government figures stated in 2014 that there are more than 11 million who fall within their definitions, which includes those with mental health issues, diabetes and invisible impairments. We are the largest minority group in the UK, if not the world.
But oh, the disabled are tragic. Or sporty brave. Or embarrassing. They’re ungrateful. They’re a burden. More recent history condemned us as scroungers.
How we reclaim our place within the human family – explicitly and fully included – underpins much of my work.
The Social Model
Many of us have fought to move the oppression of these markers we never chose, including the new smothering COVID-19 blanket of the extra vulnerable.
We start with the realisation that impairment comes easily with the intricacy of our complex human biology – the human animal breaks easy. But, we who live disability, know it is the confrontation with the imposed barriers and breakdown of societal organisation that makes us disabled.
This is the social model of disability.
This understanding of disability, the social model, has been around for more than 40 years and continues to liberate the minds of disabled people.
It underpins our civil rights movement. Developed in the 1970s by disabled anti-apartheid refugee Vic Finkelstein, this led to the formation of UPIAS – the Union of the Physically Impaired Against Segregation – and the intellectual foundation of the social model in The Fundamental Principles of Disability, the manifesto for any self-respecting disabled activist to this day.
It defined us as oppressed. Now we knew – not what’s wrong with us, what’s wrong for us.
The simplest way to demonstrate the social model is to use me as an example.
The Causes of Disability
I became a wheelchair user at 14 after childhood illness. I didn’t have the language of the social model, but I was soaked in rebellion even as a baby writer, able to see that endless tweaking of me medically would never make a difference to whether I could get on a bus. I saw the barriers and instinctively knew they should be removed.
By the time I went through punk and found my tribe, I was fortunate to live through the emergence of the social model, particularly in disability culture. Vic Finkletstein took an early role in the London Disability Arts Forum, where later I served on the editorial committee and received early writing commissions.
I understood, at last, it was not my fault I couldn’t get that job in an office up four flights of stairs or use the tube to get there. The fault was caused – disability was caused – by society’s failure to competently and comprehensively ensure our equality and inclusion. Not only in how the environment is arranged but in attitudes that continue to marginalise by the lack of access which can be defined loosely into three key areas.
First, the environment – perhaps the most obvious in explaining the social model. An example is the requirement that buildings are not reliant only on stairs.
Secondly, information – a barrier is printed material in inaccessible formats. While technology should have made these barriers easier to remove, in some cases it has multiplied them. But this isn’t merely about printed or online material. Access is created through audio as well as print. British Sign Language as well as verbal language.
Thirdly, negative attitudes – from which all the other barriers manifest and magnify, which are the toughest to dismantle. A rallying cry, ‘Nothing About Us Without Us’, reflects our frustration at what is imposed and, while our activism grows, we remain marginalised in the big Out There.
No More Barriers Needed
Sometimes, just sometimes, I wake up and am not disabled in my fully accessible, barrier-free home, with a personal assistant employed to the Choice and Control concept developed by disabled people.
When I leave home, the first barrier – a lack of dropped kerbs – reminds me quickly I am disabled again.
The sombre truth is that the social model highlights how the failure of governments to fully respond within this framework brings us firmly to the current COVID-19 impact – that the unnecessary barriers still experienced cause such an excessive number of disabled people to be affected, beyond any existing comorbidities.
My own experience with COVID-19 highlights this. Me, the gobby old punk, entirely charming but scathing in the face of injustice and barriers.
I’ve needed two tests over the past year and the first saw me set off with my PA to the testing centre, where – I was assured on the phone – of access and parking. When we arrived, I was confronted with a flight of steps and nowhere to get out of my car (environmental barrier), and no signage as to where I could actually get in (information barrier). Negative attitudes opposed me at the No Entry gate when I was blanked by security staff and let through only after my PA was lectured, the old ‘does she take sugar?’ trope.
The second was a home test. I couldn’t open the packet or read it as the font too small. Fortunately, my PA removed those barriers and, when it came to my vaccine, ironically, there was not a single barrier. But I am an old rebel. I know how to fight.
I’ve screamed at my TV hearing the reports about the disproportionate death toll of COVID-19 among people with learning difficulties and within the disabled population as a whole. The statistics are grim, showing up to 60% of Coronavirus deaths are within our community.
If accessible information is not available, if there are barriers to care or transport, then these are the horrific obstacles – removable obstacles – to access a vaccine. It sounds basic and it is obvious, but little action is being taken.
We don’t need yet more enforced circumstances that create a specific vulnerability arising from our social exclusion.
If I don’t scream, I weep. Yet, along with other activists, I’ve learnt how to fight through my words and have a responsibility for those disempowered to speak, who have faith that I raise their concerns and share their stories.
The social model, if put into full practice, would not only liberate disabled people from oppression (including those yet to come), it would transform outmoded concepts of the human condition.
Progress is evident but equality remains elusive – as the horror of COVID-19 shows.
I fight on, social model my eternal touchstone from those that went before me.
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