(Dreaming and Fixing and Failing and Starting Again)
This post can also be read at my Substack.
Real Activists
I lost two disability activist friends this year.
Lisa Egan was one of those disability activists who knew that none of us can do this alone. I think of Lisa as a crip doula, as the disability justice movement calls it. She welcomed so many newly disabled people, not into just the disabled life, but into an activist community. She showed us how to navigate a world that doesn’t value us, and how to find the people who are trying to do something about that.
More than a decade ago, Lisa dragged me and quite a few others into digital activism to protest the government’s austerity agenda – the devastating cuts to benefits and services that disabled people were facing back then (and are again today). I was quite new to life as a wheelchair user, though not really to disability. Lisa had been doing her disability doula thing for me: from teaching me about the social model of disability, to helping me find the sources of support I would need to survive as a disabled person. And now those benefits were being taken away from people who needed them. All I could do was tell their stories.
It was the early days of a different kind of activism. I was regularly asked if blogging could ever be “real activism.” If I called myself an activist, shouldn’t I be out on the streets? It was a vision of ‘legitimate’ activism that could never have included me. I’m an autistic wheelchair user with joints that dislocate if I so much as give them a firm look. I get anxious getting on the tube, never mind blocking the road outside Downing Street (did that once, probably won’t try it again). I’ve done a bit of the placard-lifting, demo-type “real” activism that the word conjures up – but I was never going to be very useful out on the streets. Behind a computer screen, I could do something, if only something small, as part of a changing disability movement in a society that was really starting to show its ableist chops. I could tell some stories.
But the question kept coming back around.
Am I a real activist?
Fast forward over a decade. I made another activist friend – Jean Willson. I don’t even know if Jean would have called herself an activist, but she was a force for social change. When she died in her 80s, she had been fighting for decades with people with learning disabilities for independent living and dignified social care support. Jean was a trailblazer in that battle – one that still rages on. Jean was also was a big part of the reason I went back to church, after years spent struggling to access my communities, and then giving up. Jean knew not just how to spot the people on the edge, but how to draw us into a collective struggle for change. A lot like Lisa, really.
Real activists.
Photo by Li-An Lim on Unsplash
Failed Activists
I’ve been thinking, recently, about whether I can – and should – call myself an activist.
As a researcher who likes to call myself a researcher-activist (and regularly fails to live up to the promise of that overly ambitious title), am I any more of a “real activist” than I was as a digital activist? What about as a trustee of a Disabled People’s Organisation, which itself does incredibly important work, but where my own role mostly involves – you’ve guessed it – sitting behind a screen?
At Lisa Egan’s funeral, I was reminded that she called herself a “failed activist.”
The irony is right there. I wonder if Lisa knew how many people she encouraged to do more than sit back and watch in terror as the government’s neoliberal austerity agenda destroyed our lives. She helped birth a whole lot of activists.
And we all failed.
Photo by Matt Howard on Unsplash
Dreaming while the world burns
Reflecting on allyship in a terribly unjust world, for her daughter and so many other disabled people, my friend Erin Raffety recently asked, “Why am I spending so much time imagining the future when the world is burning?”
At Manchester Met this year, we’ve been hosting a seminar series on activism. We’ve heard from some incredible speakers about the work they do to try to change an unjust world – from grassroots activists who’ve been fighting against the government’s cruel benefit cuts for over a decade, to the citizen journalist working to make sure that the preventable deaths of people with learning disabilities are, finally, prevented.
A world on fire needs dreamers who imagine a better future, Erin writes.
In world on fire, these activists are right at the front of the line, with buckets of water and fire hoses. They’re giving me hope, as activists so often do.
And yet, from several of these speakers, and from many other amazing campaigners, I heard the same question I ask myself. Are we really activists?
How can any of us claim to be changemakers, in a world where nothing seems to be changing?
If we’re not asking ourselves that question, I think we’re in trouble. If I ever stop thinking of myself as a (failed) activist, I might give in to despair. I might stop imagining a better world.
When we stop imagining a better future, everything burns.
And I think the idea that disabled people have a future at all is one of the most important dreams I can dream right now.
Failing and fixing
Back then, digital activism was my tool for change. Back then, before Austerity Round 2, and the very real threat to the financial support that means the difference between life and death for so many people. Before the Covid pandemic, when people with learning disabilities died at horrific rates. Before the spectre of assisted dying, in a society where disabled people don’t have the right to assisted living. Before a court case and a regulatory body calling itself the ‘Equality and Human Rights Commission’ took away my trans friends and family members’ rights to use public toilets in safety and dignity. Back when I still had decent social care support to help me shower and cook food and work.
Back when I could.
And now that my activism has failed to prevent most of what I ever fought to prevent… What now?
Failure isn’t just part of the story. It’s the heart of the story.
As failed activists, all we can do is get up and keep on imagining a better world. Tikkun olam, as my Jewish spouse calls it. Repairing the world. With whatever tools we have to hand.
These days, research is my activist tool – maybe the last one left in my toolbox. As a researcher, I can ask the awkward questions (you know, the ones that autistic people are known for asking). Like, “why?” (Why, more than a decade since we were last campaigning against cuts that kill, are we having to do it all over again?) The best scholar-activsts ask the questions no one else dares to. They give me hope, too.
But research alone can’t create change. The master’s tools will never dismantle the master’s house, Audre Lorde said, and she was speaking to academics. Funding agendas and academic reputations will always stop me from doing the real activist research that I want to. But research can be a gift, a resource, for activists. In disability studies, we talk about making sure research is useful to disabled people. Paul Hunt – a disabled activist – once told academic researchers that we can be on the side of the oppressors or the oppressed, but not both. There is no middle way.
So if we’re going to do this research thing, we need to sit in allyship with the people who are doing the real work.
What an incredible privilege — to dream while the world is on fire. Passing the buckets full of water down the line.
I don’t know if I can dream a better future. But I can listen to the stories of the people who are. I can share those stories. (And I can do the paperwork for organisations that are bringing these storytellers together, at a time when we need each other.)
Somewhere along the way, I started curating the stories of those who can still dream. I do strange things and call them activism, when what I really mean is telling my community’s stories. In academic spaces; in community and arts spaces, now and then. I even preach in churches, sometimes, feeling like the worst kind of imposter. But I’m just there to tell my community’s stories.
This is the community that drew me in. People like Lisa and Jean, who showed me how to keep dreaming when the world was burning. It’s a community I owe quite a lot to. Telling their stories is the least I can do. And it’s the most I can do.
It looks even less like activism than blogging did. But then, my activism has never looked the way activism is meant to. Does anyone’s?
We’re all failed activists. I hope I can keep on failing – and dreaming and fixing and failing and starting again – for a bit longer yet.
Photo by Kevin Gutowski on Unsplash
The phrase ‘dreaming and fixing’ comes from the Disability Advisory Group at St Martin-in-the-Fields Church. Emily Richardson and I tell the story of this disabled activist community in our book ‘At the Gates’.
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