If I had a magic wand
Áine's invitation to the meeting place of disability and climate has already become one of our most popular newsletters so far. Áine wrote beautifully on community, and how coming together lets us create a new world.
Today we explore different dimensions of community and the disability movement. Its importance is borne out in my own life and in learning from the pandemic response. But, as I argued in a recent interview, our international efforts on disability rights don't invest enough in growing our community.
This edition shares that interview, quotes of the month, and continues the practice of looking back to look better. I am also proud to update you on where the Debrief has gotten to since the year-end update on making disability media. We've reached new milestones and that lets us dream bigger.
If I had a magic wand...
I had a great time with Phil Friend and Simon Minty on the Way We Roll podcast. We talked about what it means to have a disability lens, and reflected on how my vision comes out of living and working in Bangladesh, Brazil and elsewhere.
We spoke about disability culture and the relevance (or otherwise) of work from international organisations. They asked me what I would do if I had a magic wand. I said that the intervention I most believe in is the “connection of disabled people with other disabled people”:
I've seen through my travels how it transforms lives to meet people facing comparable challenges to your own, to get out of the isolation of thinking these challenges are just yours to deal with. There's an extraordinary power... it gives culture and poetry and song. It's what brought us here together today. It's changed my life and its possibilities.
I also shared with them the gap I see in the international work done on disability over the past five plus years. Our work has grown in many areas, and we've been riding a wave of attention. We've been talking about “participation” in existing structures, or for some programme objective. But it's an enduring disappointment to me that we don't invest more in mobilising disabled people to join and grow our movement.
It's not where you go, it's who you travel with
The importance of community comes through loud and clear from looking back on the news the Debrief has covered. Never more so than the news from April 2020 when I caught a snapshot of the extraordinary response the disability community made to the covid pandemic. My words at the time: “an unprecedented attempt to look after each other”.
I don't think we've learned that lesson fully. I stayed safe through advice I got from disabled friends. Many learned to deal with illness more from others who were sick than from health systems. Governments took action not because they had a disability minister but because the disabled community immediately demanded they did. Those of us working in response did so working with colleagues we'd found in the previous years.
In our work, we often think about outcomes, but we need to think more about connections.
“One way for experiences to touch”
Another great thing about looking through previous Debriefs has been finding the timeless pieces.
Back in February 2020 I didn't know how much this newsletter would become about health. Much of what I've explored since echos Jamie Hale's piece on how hospital care fails disabled bodies:
“The hospital model is based on taking ill people, treating them, and making them as well as possible before discharge. It isn’t designed for people who are trying to limit their decline with careful management and established routines. It’s built for unwell patients who need doctors to make the decisions, not disabled people who know what their bodies need.”
In April 2021, my favourite thing was Raymond Antrobus on the invention of sound. What is sound, he asks?
“It's a kind of mythology. [It's] an inherited form, maybe. Just another way to to understand the world? [We] have talked a lot about sound being an invention of the hearing. Silence too. I think often about how our common understanding of sound is that it is natural and given and compulsory that it's just a thing that, um, I don't know occurs to us? But if it is that sound is, you know, waves knocking around in the cave of one's head, and then processed in some kind of approximated but not necessarily universal way, then isn't sound just a metaphor? It's one way for experiences to touch.”
Also in April 2021 I shared my own Dancing on the Stairs, a spoken word poem where I unfolded my mind and heart, reflected on my own disability, return to the UK and how they fit into me. People's responses to that piece showed me a truth that sets me free: speaking about what makes me different is the most powerful way I have to connect with others.
Quotes of the month
Calling on All Silent Minorities by June Jordan: says in twenty words everything that I could ever write about community.
How we think about access:
- The Tweedy Mutant brilliantly describes the emotional labour of disability as the “accessibility mental load”.
- Leah Lakshmi Piepzna-Samarasinha says having to think through alternatives means that “disabled people are prepping all the time whether we call it that or not”.
- Mia Mingus on Liberatory Access: “Access is something we can use to transform our world, not just merely logistics to check-off a checklist.”
Two comedians summarise what we suffer from:
- Xiao Jia walks with a limp: “As a kid, I thought that was normal, the first time I saw a kid walking with normal feet, I was filled with pity”.
- Tina Friml says a lot of people thinks she “suffers” from Cerebral Palsy: “I don't. I have Cerebral Palsy. I suffer from people”.
Quotes from previous years:
- In 2021, Disability Rights Fund statement on post-election violence in the US reminds me of our reporting on people protesting in Peru: “We have a long way to go to address the underlying and sustained problem of white, colonial, mainly male, and ableist power.”
- Timeless, from Brianne Benness describing the phrase “loss of independence” as a “misleading euphemism for the transition from needing normalized care to needing stigmatized care.”
Where the Debrief is going
Smiley face holding back tears
We've reached a couple of new milestones. Áine's piece was the first Debrief that went out to over 2,000 people. And the website launched in August last year has had over 11,000 different visitors.
I really appreciate this growing community of folk interested in disability news. Congratulations also go to Kevin Gotkin whose excellent Crip News arrived at that number of subscribers just ahead of us. I echo Kevin's words to his readers: “[smiley face holding back tears emoji] wow, rad. thanks for being here.”
There's something else that I need to thank you for, and it's something that's deeply meaningful and motivating for me.
I make the Debrief as a public resource. Everything is free and open, and always will be. I do not want there to be any financial barrier to access this information. It's available on a pay-as-you-can basis. This only works if those who appreciate this information do indeed pay as they can.
And y'all do. A huge 13% of you have contributed to keeping this going, through individual donations, regular subscriptions, or support from the organisations you work for. The number of your contributing is healthily above the standards for internet newsletters, who usually hide content behind paywalls.
Thank you for the belief in the mission to share disability news and the way you use this resource to make changes in your life and work. And, in what means I have to hold back tears, thank you for the trust in me.
This is my job now
In the last 12 months, your support added up to over £42,000. This is a big jump from where we were at the end of last year. It means I don't need to balance this work against my consultancy anymore, I can focus my efforts on the Debrief.
By a long margin, this the best job I've ever had, and I'm doing my best work. We've made the fastest-growing library of disability news anywhere, and created something people depend on.
My goals for the next twelve months are, in brief, to:
- Make great content
- Double the Debrief's audience
- Triple what I invest in contributors
- Upgrade curation and navigation of the library
- Build the partnerships and fundraising that make this possible.
What it can become
I'm more than happy that this continue to be my work, and I bring in some people to write with me. But it could become bigger.
Making disability media contributes to tackling the most serious challenges our sector faces: increasing awareness of disability, disseminating evidence and knowledge, and building capacity to work. Social movements need media, because it brings us together.
The Debrief could become an organisation dedicated to that, sharing our disability story and supporting those making change. I would love to set it up in a way that might exist even if I move onto something else in five or ten years. I'm ready to work towards that, if others want it too.
Where we go from here
Where will the Debrief go? You tell me: I work for you.
Let me know what the Debrief can do, and what issues we should cover. Press reply, comment or find us on Linkedin and Twitter.
Share the Debrief with your friends and, if you can, carry on contributing. If you're someone I should be talking with about writing for the Debrief, let me know.
I can't do this without you.
Thanks to Áine Kelly-Costello for careful reading and editing.
With much gratitude to all two thousand of you readers. For most of my career I've worked for organizations where I felt I've needed to be on the defensive and hold myself back. You let me work whole-heartedly.