This post was originally published on 19th April 2020 by one of our Volunteer Support Workers, Alex Foster on her blog ‘Tales From The Chair’.
Is the fight really over?
The battle for equal rights is perfectly encapsulated in the second half of Netflix’s documentary on disability in the USA. And I’ve a sinking feeling it won’t be long before that battle will need to be fought again.
I can’t pretend the second part of my review hasn’t been substantially delayed by the current situation the world finds itself in, and that much of ‘today’s’ focus on the elderly and vulnerable in our society lends itself to some interesting parallels with the struggles of the disabled community fighting for their rights, during what is the conclusion of Crip Camp.
Vulnerable. It’s a word we’ve heard an awful lot in these strange times the last few weeks. Lockdown has made us passive recipients of a stream of news and media flowing with the spread of COVID-19, news that focuses on numbers, death tolls, daily updates, graphs, lines, queues, PPE, livestreams, clapping, singing, crying, laughing. All snipets. Soundbites. Flowing past us before we’ve had time to really drink them in. Like a dream we’re all stuck waking up to. But what are we actually taking in? An atmosphere. A way of thinking. How long will it linger on when this flow of news stops?
What does vulnerable mean to you? Old? Frail? Weak? Disabled? Broken? Unable to be of benefit to society? Deserves to die? Well, that escalated quickly. Trouble is, that kind of discriminatory attitude, labelled currently as pragmatism, is already here. In the disgustingly bigoted hate mail, the reports of DNR (Do Not Resuscitate) forms for those with learning disabilities, the ‘points system’ for ventilators, the thousands of unreported care home deaths, the ‘Vulnerable Person’ registers. This pandemic is exposing the divisions in society that society thought it could ignore.
It has exposed a systematically broken society, one that has ignored minority voices, those who could not speak, or whose voices were not being heard. Those who have been made ‘vulnerable’. Quite apart from any inherent impairments, they have been put at a disadvantage thanks to society not listening. And now there’s a danger these same people will be considered less of a priority because they have less quality of life anyway.
One part of Crip Camp that will stay with me is the sheer conviction with which Judy (above) spoke out against the preening indifference displayed by the US Government official sent to speak to the 504 protesters. It was as if he was saying (of a separate special school in each state) ‘You’re going to accept what we offer because you’re causing trouble- what we’re offering is something you should be pleased with, a real step up!’ The insult in his tone and manner were as plain as anything. I felt it cut deeply, and so did Judy, and she expressed it so eloquently and so determinedly that it brought me to tears.
The one other part which brought about tears, was the harrowing realisation that there were still institutionalised disabled people in the US (and likely UK) as little as one generation ago, the 1960s & 70s. If I was born when my mother was born- would I have been carted off to an institution? Taken somewhere to be brushed under the carpet, ignored, forgotten, neglected, maltreated? Put all the problem people in a box and close the lid. The institution footage was a nightmare, it was a prison full of innocent humans.
The majority of the disabled population of the UK, which approx 14 million- is aged over 65. Naturally as the body ages it’s more susceptible to physical and mental impairment. Some will need more help with day to day living. Some will need residential care. I worry that our country’s care homes hold many of those who have been brushed under the carpet by our government, indeed they have always been repositories of sorts. They are sad, hemmed in places, with stifled dirty heavy air. When I used to visit my grandad in the year’s that he lived in one, I always felt unclean immediately on entering, hyper aware of some ‘invisible grime’ on every surface as I moved through the corridors to the sound of machine beeps, small soft voices singing the Sunday hymns, the rattle of the tea trolley. God knows what it’s like in the middle of this pandemic. No one in government seems to be listening to the cries for aid from staff, stretched beyond belief. They certainly never have been before, if decades of under funding are anything to go by. That’s what’s so worrying. Old age comes to all. What state will we find our safety net, our social care, in year’s to come? How much longer will these voices be ignored?
As one Camp Jened alumni proclaims, after the Americans with Disabilities Act (and UK Disability Discrimination Act of 1995): “This is just the tip of the iceberg” in the fight for civil rights. There is more still much more to be done. We are all human after all, one group should not be judged as less of a priority than another for even basic human rights. It’s something we all need to remember during times like these.
*Disclaimer: I’m aware a lot of the links to articles etc., that I’ve included are left leaning, and they’ve been sourced from my twitter feed (anyone who says theirs is not an echo chamber is lying), but I follow accounts that tweet about disability rights and inequality, and most of these seem to be that way inclined. Just wanted to raise the issues as a topic more than anything, and I’m open to different perspectives of course.