Busy fixing yesterday
Dear Debriefers,
Following disability news from around the world, I come across many insights or telling descriptions of our individual and collective experiences.
It's been a while since I've shared my favourite quotations, so that's what this edition is dedicated to. As ever, it's full of the personal and the political: from friendship and health to the tightrope of disability community.
There are perspectives on parenting, accessibility work, and the problems with awards. As well as, err, accessible hiding spots in horror films.
About this edition
My favourite quote is from Alice Wong. Alice is an amazing writer, connector and founder of Disability Visibility Project. She is prolific in sharing disability stories, and just joined those supporting the Debrief:
“I will definitely make a small donation to support your work. People don’t realize how much work it takes to maintain a newsletter!”
Thanks to Alice and other readers whose generous support makes this edition possible. Gratitude for other new contributions to Andrew, Stefan, Steven and Vita, as well as to CBM Global for a renewed subscription.
Peter Torres Fremlin is editor of Disability Debrief and is from the UK.
“We're always busy fixing yesterday”
In Ireland, this profile of Sinéad Burke sees her argue for “greater ambition around the positioning and value of disabled people”:
“In Ireland there are so many systemic issues that need to be solved for people with disabilities – the lack of independent living options, opportunities for employment and financial independence, access to school and education places – we’re always busy fixing yesterday. While this is incredibly necessary work, we have no mechanism in place to deal with tomorrow, five years’ time or 10 years’ time.”
“They would never mention my health”
In the UK, Frances Ryan shares how, when she became chronically ill, she found herself feeling shut off from even some of her oldest friends. “A few went quiet or disappeared”:
“If we did speak, I noticed they would never mention my health or the vast changes that had happened to my life. I understood their reticence; I barely knew what to say myself and I was the one actually living it. But at the same time, these conversations always felt faintly ludicrous, as if there were a five tonne elephant in the room and I was expected to join in the pretence it wasn’t standing on my foot.”
It's a relief to see this put into words. Over the past years, as I fractured my leg and lost a lot of mobility I found it painful to feel a gap open up with some friends. One of the forms of help I needed was talking with others about what I was going through, but I wasn't always able to ask for it, and some weren't able to give it when I did. In retrospect, I see that neither I nor they had the tools to navigate my new reality.
“Digging myself up”
In New Zealand, Jo Randerson wrestles with getting an ADHD diagnosis in her 40s. She shares how it comes after a lifetime of trying to fit pieces of her identity together:
‘My life has felt like I’m an archaeologist digging myself up, piece by piece, and slowly stacking my bones together into a skeleton that I recognise. Sometimes I learn how to place bones by seeing how someone else has done it – “Oh! That wrist connects to the elbow!” But sometimes I have pieces that I don’t know what to do with. “Should I put these two lumps on my head? Are they extra ears? Or toes?”’
“Not representative of our field”
Forbes has launched an inaugural Accessibility 100 list of organisations it judges to be “the biggest innovators and impact-makers in the field of accessibility for people with disabilities”.
One of those on the list was New Disabled South, and their CEO, Dom Kelly, shares his reaction. As well as welcoming the recognition of their work, Kelly critiques the list as “not representative of our field by any stretch of the imagination”.
In his view many “belong” on the list, but many shouldn't be there:
“I’d love to see a future where corporations - who have decades of documented disability discrimination lawsuits, who bend the knee to abandon DEI, who allow the unchecked spread of ableism, racism, anti-Blackness, anti-Arab hate, Islamophobia, transphobia, antisemitism, and more on their platforms, who fund genocides and weapons of war, and who ultimately give themselves carte blanche when they receive honors like this - aren’t recognized. I’d love to see a future where organizations who are led by nondisabled people and who perpetuate harmful narratives about disabled folks do not get recognized. I’d love to see a future where disabled people are the ones commissioned by companies like Forbes to put lists like this together. Or maybe no lists at all?”
I agree with the fundamental importance of reflecting critically on the ways disabled people and organisations are recognised. Recognition is great, but it is also a form of control and cooptation.
I don't ask that everyone critique awards they get, and there are certainly risks to doing so. But it is part of our work to challenge the way disability is conceived socially and question the stories that are told about us by others.
For an example of where I've tried to do this, see my reaction to being on the Shaw Trust Disability Power 100.
“Walking a tightrope”
In Malaysia, Beatrice Leong reflects on power, advocacy and what's next for the disability community. She too is looking for a voice and leadership “that bridges where we are and where we need to go”.
Looking for transformation, Leong shares how collective leadership “has been overshadowed by mistrust and factionalism”, and divisions within the disability community:
‘Disempowerment doesn’t just come from “outside” forces. It comes from within our community too. I have seen how quickly people shift from support to isolation based on whose “side” you’re on. I have experienced how I am praised when I am friendly with certain individuals or organisations, and how I am siloed the moment I challenge them. It feels like walking a tightrope—balancing on the thin line of who I can be friends with, whose side I am on, and which relationships are considered “acceptable” or “dangerous.”’
Processing pain collectively
In Kenya, the Kenya Network of Women and Girls with Disabilities explored how to process pain and traumas collectively, and how they intersect with advocacy. They are thinking more intentionally about the question:
“How do you show up at a collective level when you have so much pain to process at the individual level?”
It's a question that reminds me of Bailey Grey's insights on the need for trauma-informed approaches in disability organising.
“A single disabled adult present”
In the UK, John Harris seeks to shift the conversation on social care, looking at the failings of care for disabled people, and how it stops disabled people participating in society:
“Consider a few simple questions. If you are not disabled and you regularly go to a yoga class, choir practice, a book group or just the pub, when was the last time you did so with even a single disabled adult present? As much as the crisis in special educational needs is huge and pressing, does it ever feel as if it also highlights a complete avoidance of issues to do with the grownups that children involved inevitably turn into? And particularly when it comes to people with learning disabilities, why is it that even self-consciously progressive people have almost no conception of who they are, what they need and how badly they tend to be treated?”
Powerful questions, and certainly not just for Harris' non-disabled readers.
I'm happy to say that the social events I go to in Colchester have quite a few disabled people present and able to be open about their disabilities. Quite a different situation in my work-life though – having an obvious disability while working in international aid did let people guess (correctly, in my case) that I was the disability specialist.
“No one should have to live like that”
In Greece, a discussion among self-advocates saw people with intellectual disabilities share their lives and dreams. Maria Nefeli said:
"When I lived in an institution, there was a blue light over my bed. That light was my only friend. No one should have to live like that."
“The art of consensus”
In Switzerland, Malick Reinhard writes on the paradoxical relationship with home assistants:
“As you will have understood, being an employer of your care workers, while being in a situation of high dependency, is a constant game of chess. An iron fist in a velvet glove. Stay the course, without offending. Be diplomatic, without flinching. A very Swiss thing: you have to know how to master the art of consensus.” (Translated from French)
“The cracks in the systems”
Devon Persing writes on Assistiv Labs about the need to create accessibility systems to fix (digital) accessibility issues. As well as arguing that accessibility can't be addressed by one-off initiatives, she shows how it exposes other challenges teams have:
“Accessibility work often reveals strengths and weaknesses in teams’ existing processes and workflows. For example, teams that struggle with using automated accessibility tools can be ones that already struggle with automated tooling. Teams that struggle to talk about accessibility across roles can often struggle to communicate in general. Accessibility work usually finds the cracks in systems, so we often end up doing accessibility work and also work to shore up or change those systems.”
I think the implications of this insight need to be given more attention by those working to make organisations more accessible or inclusive of disabled people. Some of the barriers we face are directly related to disability, but many of them are related to structures that need deeper reform.
“Diverse ways people describe their own experience”
I'm normally busy quoting other people, so I was flattered (and surprised) to the Debrief picked up in an academic paper. Judith Baart and colleagues wrote on the definition dilemma, and how definitions of disability shape statistics on social participation. They start the article by quoting from my explanation of the Debrief's language choices around disability:
‘We say that 16% of the world’s population has a disability. The majority of them do not use the word “disability” to describe themselves. To understand disability requires us to make space for diverse perspectives and diverse ways people describe their own experiences.’
I'm happy to see folk picking up and exploring this. I see it as one of the foundational challenges of working on “disability”: that most disabled people do not identify as such.
In this case Baart and her colleagues explored how using different statistical measures of disability leads to different groups classified as disabled, as well as different results on level of disability.
“My ability to parent”
In the UK, Amy Kavanagh writes about pregnancy and parenting as a blind mum:
“The truth is, my blindness does impact my ability to parent, but not because I can’t see. It impacts me when other mothers won’t sit next to us at playgroups. It impacts me when the librarians gossip, talking about us as I use my residual vision to read you the large print in ‘That’s Not My Dinosaur’. It impacts me when they try to turn us away from soft play because of Ava.”
“Prepared to fight for their children”
In the US, a piece in memorial of Rud Turnbull remembers what he told a parent discovering their toddler was likely to have a disability:
“All parents need to be prepared to fight for their children, but parents of children with disabilities need to be even more prepared to fight for their rights.”
“Secure hiding spots”
In New Zealand, Lotto Ramsay writes in D*List about horror films and their “obsession with disability”. Ramsay's position is that:
“I want to feel horror. I don’t want to be the horror.”
Rather, Ramsay wants to see horror films explore the creativity of living with disability and ableism:
“In a slasher battle, you bet I’m going with a powerchair user. It’s a heavy efficient vehicle, people always pack them to the brim with everything one’s heart could desire, and I bet they’d also know where all the good bathrooms are (secure hiding spots).”
And that's all for this week. Hope your powerchairs are well-packed,
Peter
Article updated on 27th June to reflect some typos and that quote from Reinhard was originally in French.
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Acknowledgements
The photograph is by Catriel Gallucci Bordoni/NurPhoto via Getty Images.
And many thanks to everyone who shares links, news and reports – along with the readers and organisations whose support makes this work possible.