Finding our future

The crisis at IDA, hierarchies, poetry, and more

Dear Debriefers,

It's been a while since I last opened the Debrief mailbag, and readers are, as ever, thoughtful, informative and creative.

Last month's piece on the crisis at the International Disability Alliance (IDA) quickly became one of the most viewed newsletters I've published and has raised key questions about the future of the disability movement.

Beyond those, we discuss gatekeeping, see why we need to pause more often, and have a poetic response to what couldn't be said as a child.

Disability Debrief is supported on a pay-as-you can basis. Thanks to Leanne for a new contribution.

Finding our future

It's good to see how the Debrief coverage made space for the first public discussions of what's happening at IDA. People have responded on linkedin, the CRPD Forum, and the post itself. Here are some of the key themes and questions coming out of the many discussions I've had since that piece.

Accountability for what happened. Has responsibility been taken for what went wrong, and what are the repercussions, legal or otherwise?

Governance that balances professional and political needs. Organisations of IDA's size, with multi-million dollar annual budgets, must have a board that has the skills needed to govern them. And in IDA's case, it also needs political representation of disabled people. But the profiles, skills, and responsibilities are quite different for each function. How can its governance include both?

The risks of the crisis. My piece shared concerns I was hearing that the disability movement would be damaged by the crisis. Since then I've heard from correspondents directly within the ecosystem of organisations supported by IDA and worrying if their funding continues. Others are involved in transnational processes where IDA plays a key role for disability work and they worry work might stall.

The future is feminist. Diana Samarasan and Catherine Hyde Townsend argue that “our disability future is feminist”. They point to the disproportionate dominance of men in IDA's leadership and ask “is it just us or do we still have a gender problem in the disability community?” As they say, IDA's renewal is a chance for the organisation to learn from, and by led by, amazing feminist leaders.

A time for new strategies. Many feel a need not just for putting the house in order but changing the way we inhabit it. People are discussing how IDA and its partners could shift in strategy and if there are alternatives to the model of one organisation to represent us all. How can leadership in the movement be less oriented to lobbying and more to uplifting and strengthening others? What are possibilities for organic growth rather than top-down change?

More questions than answers. The crisis has left a lot of uncertainty about the way forward. It's easy to feel frustration, or worry that old dynamics are already coming back. But there is also hope that promises of renewal can be made real.

Hierarchies and horizontality

Alberto's piece last week on gatekeeping in the disability movement has resonated widely. Many people felt a personal relief at reading a description of what they're going through. Mona Visperas, for example, said “I was doing my best to hold back tears because it perfectly encapsulates what I feel here in the Philippines.”

Another reader who resonated with it was Ariel Baska. And Ariel also pointed out that the lack of a gendered view was a serious gap in the piece:

“As a multiply disabled artist/organizer in the realm of film, the gatekeeping conversation here seems particularly important to me. Unfortunately, I chose the most expensive art form, where disability funding is controlled by non-disability led organizations. I often feel alone in my fight as middle class white men in wheelchairs are almost always prioritized at the expense of everyone else in the movement.

Even though the phenomenon itself is distressing on the whole, I am so pleased to read about this from a Global South perspective, and to gain a deeper understanding of the international implications.

But the lack of acknowledgment of gender is also upsetting to me, as someone who was born a woman, but chose an a gender identity. Misogyny is still a big part of the gatekeeping of the disability movement, in spite of Judy Heumann's legacy, as is anti-Blackness, anti-transness, even though we owe so much to black disabled trans women in both the queer and disability movements.”

The piece has provoked reflection among those of us that get put into the position of “experts”. Personally it's also made me think about my role as editor of the Debrief. I am constantly making decisions about what I do and don't include.

Another dimension in response has been questions about the risks of abandoning hierarchy to more horizontal approaches. For more on this, Alberto points to a classic essay from the women's liberation movement in the US, Jo Freeman's ‘The Tyranny of Structurelessness’. And for a more recent exploration, Vincent Bevins's book If We Burn: The Mass Protest Decade and the Missing Revolution. It argues that opportunities for change created by protests could not be seized because of a lack of organisations.

Too big to contemplate

Anna Ruddock appreciated the “quality of wisdom” that Julia Watts Belser showed in our conversation on surviving the climate crisis together. Anna draws a contrast between that “stillness” and the “superficial noise we're usually surrounded by”, and how it impacts our work:

‘Speaking of the “massive shift in resource allocation” that is needed to alleviate the precarious positions that so many disabled people are forced into - the “dramatic rethinking of social services, community networks, support, employment” – Julia notes that this scale of thought is not always well-received because “it’s so big”. But she insists that it is important to name it. Yes!

I've had many experiences of being silenced at work for drawing attention to the structures and systems of power that are at the root of a problem we are supposedly trying to solve. Maybe you have too. Some people react defensively, some dismiss it as too big to contemplate, and some people scoff and imply there's something intellectually unsophisticated about critiquing the ravages of extractive capitalism - usually as a means to deflect their own difficult feelings about it all.

And so we continue to tinker around the edges. Because that's what we're paid, or funded, or instructed, to do.

We need to pause more often. We need to stop and meet each other; to look up and acknowledge that “it's so big” and that many of us are complicit in much of it; to imagine better futures anyway, and see if my small piece of work is complementing yours, and if we can edge closer to the heart of the matter, together.’

Flawless evacuation

At the start of January there was a crash at Tokyo airport when a passenger jet collided with a coastguard plane on the runway. While those in the smaller aircraft died, a “flawless evacuation” got all 379 passengers and crew to safety.

Thanks to a tip from Yoshiko Miwa I heard that there were two wheelchair users on-board. We often assume the worst, so it's great to hear they also got out. Following up with Japan Airlines, I got a confirmation, albeit without details:

“In the JL516 case, we are not sure how the two wheelchair passengers evacuated, but we are sure that the cooperation and assistance from our customers played a significant role in the successful emergency evacuation. The communication and support among passengers in the cabin, as well as their willingness to follow instructions to leave their luggage behind, greatly contributed to the overall outcome.”

Invisible tattoo

I always appreciate being able to share poetry Debriefers have written. Dawn Matthews shares this one that she wrote for Disability History Month last year.

Dawn became disabled at nine years old, and wrote this poem her nine-year-old self, giving words to the emotions and questions she couldn't articulate at the time.

Invisible Tattoo

Was I born a babe with your name
invisibly tattooed on me,
or else by stealth befriend me?

did I crawl then stand, innocent and brave
but not as tall as those beside me?

did I run and jump and yell and shout
so that everyone could hear me,
or were the words I learned and tried to say
fall as heavy snow around me?

and when you showed me how to play
perhaps they didn’t see me
and feeling, hurting, being harried
would that be the making of me?

for all that time I would choose
the ways that will define me
to walk the walk and hold the truth
of what you will know about me
and all the while they line up for
their chance to overtake me?

or did I grow delinquent DNA
a blackened iron web of pain
that ebbs and flows within my veins
and will not rest or go away?

just smile and make the best of things
my cards are on the table
maybe help me understand
why I’m tattooed disabled?

Almost a secret

“Almost a secret.” From the US, Steven Davis wrote to tell me about Able accounts, which are savings and investments accounts for disabled people. They have a tax-advantage and are potentially a way to navigate how some of the way other disability systems force recipients to stay in poverty. Steven has done a write-up so more people can know about a program that's “almost a secret”. He is interested (as am I) to know if there are similar schemes in other countries.

Crip cinema. Crip Cinema Archive is a new project to document disability on screen, and has a carefully curated list of films. Its creator, Emily Simmons, tells me she is making it as a resource as well as a launchpad for further discussions “to imagine better crip film futures - in front of and behind the lens - and make them a reality.”

“Mind blowing disabilities”. Johnny Sawyer wrote to tell me about Film Freaks, a debut novel which is “the exact opposite of a Marvel Avengers style story”: “Forget superpowers, these Heroes have Mind Blowing Disabilities!”

“One of my favourite spaces.” Anna Maria, who wrote on the Debrief last year from Bengaluru India shared a fundraiser for Academic Audio Transcription. Anna has gotten a lot from working with them:

“It's one of my favourite spaces to be able to work with and has given me a lot of confidence with regards to how I approach work with my own disabilities, so I would love to see people pitch in and for them to be able to make it past this.”



Please share this with friends, as that's how people find the Debrief. On socials we're on Linkedin, twitter at @DisDebrief and I'm @desibility. And hit reply to say hello!


With thanks to all of my correspondents in this piece and the many others that help me keep informed and understand disability news around the world.

Thanks to Áine and Alberto for looking at an earlier version of this piece.

And thanks to the individuals and organizations whose support makes the Debrief possible.