Because we’re worth it
by Leonora Gunn
The second writing commission is by activist Leonora Gunn. I first met Leonora, or Leo, through Leeds Disabled People’s Organisation (LDPO), which she is still involved with. She edited LDPO’s literary journal, as well as writing the introduction and an excellent short story for it.
Leonora is currently doing a PhD in the philosophy of disability at the University of Leeds. So it’s no surprise that she has produced a well-researched essay for this project. (Click on the bolder text for links to her references.) But what is most striking about this essay is her passion for the cause of disabled people’s liberation. I hope you feel as fired up after reading this as I did. – GC
Thanks once again to the Leeds Philosophical and Literary Society for the grant that supported this commission.
The suffering that this pandemic has inflicted on disabled people in this country is almost impossible to overstate.
From the very beginning it was made clear that our lives were worth less, with the government planning to rely on ‘herd immunity’, the public reassured that only those with underlying health conditions were at risk – as though our deaths meant nothing, the virus allowed to rip through care homes because social care was an ‘afterthought’, and vital information never made accessible to BSL-users. Since then we have seen disabled people going hungry because they were left off the vulnerable list, abandoned without care, and pressured to sign Do Not Resuscitate orders, or even having these orders signed for them without their knowledge. Disabled people have been left out of emergency benefits support, and have been forced to return to work in spite of being at high risk from the virus. After having spent a decade being crushed under the heel of austerity, somehow we now have to cope with the fact that we make up six out of every ten COVID deaths.
And in addition to all of this, in our quieter moments, many, myself included, have felt a subtler pain.
I thought I was better prepared for the psychological reality of lockdown than most. Having had a chronic illness that has periodically rendered me housebound since I was a teenager, I am an old hand at isolation. Yet nothing could have prepared me for what really happened: almost overnight, doors that I had thought shut to me forever were blown open with but a click of my cursor.
In March 2020 I posted the following comment in a chat with my colleagues at the Chronic Illness Inclusion Project:
Is anyone else finding all the virtual yoga classes, museum tours, artistic exhibitions, theatre, cinema, reading groups… (the list goes on and on), not to mention all the remote work, kind of bittersweet? It’s wonderful that they’re there now, but I have been told so many times that they weren’t possible. And the answer is, as I think many of us expected all along, that these things were possible. It’s just that we weren’t worth it.1
As I watched non-disabled people ‘come together’ and build a new social and cultural world online, and do it so easily, I could not help but think bitterly of all those years I, and so many others, spent alone in the dark. It was completely unnecessary.
Yet I find myself wondering: How much does social and cultural inclusion matter right now, in the face of poverty, hunger, sickness, suffering and death? The only answer I have is that of course it matters because we matter.
While we must fight for our lives, that can’t be all. We must also fight for lives that are worth living.
Yes, we must overhaul the inhumane benefits system. We must demand that politicians and the medical establishment treat us not as second-class citizens, but as their equals. Our needs should never be an afterthought in healthcare and public policy decisions because we should never be an afterthought. We must challenge at every turn the insidious, eugenicist idea that anyone else should get to determine what our lives are worth. We must continue to fight, just as generations of disabled activists have fought before us, for our right to take up space in public: for accessible buildings and transport, for autonomous lives spent in our communities and not locked away in institutions. And we should also start fighting for our right to take up virtual space.
This pandemic has shown us that things can be done differently. These doors to social and cultural experiences, now opened, must not be slammed in our faces when life returns to ‘normal’. We must not be put out of sight and out of mind once more.
It is not frivolous for us to demand access to art, to recreation, to community. Full and equal participation in social and cultural life is a human right, not a luxury. In demanding this, we are demanding a recognition that we are human.
And it is not only disabled people who stand to benefit from such inclusion. If you let us in, you might see just how much we have to offer.
We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs.
– Harriet McBryde Johnson
The way that disabled people live our lives is different, and while that difference can often be painful, it is also valuable. Many of the skills we acquire – from our courage and creativity in adjusting and adapting to change, to our compassion and reliance on mutual aid – would have benefited non-disabled people this year.
However, you cannot rely on your imagination to put yourselves in our shoes (or our wheelchairs, for that matter). Human imaginations are much more constrained by our embodied experience than we realise.2 All too often, you are only projecting your fears about your own bodies onto us. You see only tragedy, and you cannot perceive our joy, or our oppression.
Art allows us to show you what cannot be said.
It gives us the power to express our unique experiences of existing in a hostile world, to explain what it means to value and also to struggle with difference, and to give you a glimpse of other ways of moving, other ways of sensing, other ways of thinking, other ways of being.
If you will only listen to us, if you will only include us, if you will only value us, there is so much we have to share about not only our own private worlds, but about what it means to be human.
1 Catherine Hale included this discussion in a brilliant blog post.
2 Unfortunately only the abstract of this article is free, but similar thoughts are also expressed here.