Greatest opportunity to learn

Dear Debriefers,

I hope y'all have had a good August. I was happy to take a tour of taxi, trains, tubes, and trams to Amsterdam and then Berlin. Now back in my native Essex (in England), I'm back to Debriefing.

Today's edition sees what we learn from disability, from doorknobs, and how to turn up to the emergency room. It puts into conversation research, policy writing and satire from around the world.

Disabled people are figuring things out for themselves, and this edition shares reactions to ableist interactions and increased authoritarianism.

There's policy, identity claims, storytelling, and Kiki, the electric wheelchair-using sheep. Welcome baa-baa-back.

About this edition

The Debrief is published through a pay-what you-can model. Thanks to contributions from Andrew, Laura, Stephane and Light for the World.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist from Indonesia.

“Greatest opportunity to learn”

In the UK, an extract from Frances Ryan's new book shares advice from disabled women on living with disability. Broadcaster Sophie Morgan says:

“Your disability can be your greatest opportunity to learn about the world.”

My disability certainly has been for me.

“The first handshake with a room”

Over at Sightless Scribbles, Robert Kingett has a brilliant essay on the Architectural Hostility of Doorknobs, and using them as a blind person:

“For me, a doorknob is never just a doorknob. It’s the first handshake with a room. It’s the opening sentence of a building’s story. It is a dense, information-rich object, a metal or porcelain palm that tells me everything I need to know about the space I am about to enter and the people who inhabit it. It’s a tactile bellwether for empathy, consideration, and sometimes, for danger. It is the gatekeeper, the greeter, and the warning sign, all in one.

Show me your doorknobs, and I’ll tell you who you are.”

“You do not show up to the emergency room as your true self.”

Over in New Zealand, Beth Awatere shares that the challenge of over a decade of living endometriosis isn't just being in pain, but also “convincing someone else that the pain is real”.

Awatere writes about the importance of its “performance”. The need to appear credible is especially important in hospital emergency departments with resources stretched thin:

“You do not show up to the emergency room as your true self. You show up as the version of yourself you hope will be believed. Sometimes it feels manipulative, but then the next wave of pain hits and you find that you do not care. You present not just your body, but your case. You present evidence. You smooth your hair. You put on fresh clothes. You wipe the tears from your eyes and try to sit up straight even when every organ in your body is begging you to lie down.”

“I didn't start off with this expectation”

In the UK, Lucy Webster asks “Who could we be if we weren't braced for ableism?”

Webster finds herself surprised when an interaction with a stranger goes well, and it shows her how much she's learned to anticipate otherwise:

“Life has taught me to expect to be patronised, excluded, pitied or plain old dehumanised. I didn’t start off with this expectation - I remember being so confused as a child every time these things happened - but somewhere along the way they’d happened so much that it became the default. It settled into my psyche without me really noticing. And then I started going to places where I wasn’t on edge and it became much, much harder to ignore how often I was.”

“Ordinary human failings”

On a similar theme in Nigeria, Alexander Ogheneruemu examines his feelings about anticipating negative encounters:

“Am I becoming so hyper-sensitized to discrimination that I see it even when it’s not there? Am I mistaking ordinary human failings – forgetfulness, sincere cluelessness, ignorance, etc, for deliberate bias? Have I, in my hyper vigilance for justice, equity, equality – and a world that sees the human in me first – before my disability, begun to anticipate hostility in every encounter?”

Power through relationships or law?

As those examples show, there are different methods that we use to make claims on others.

Based on research with women with disabilities in Uganda, Julia Modern compares different language used to make legal or relational claims around disability and health. She explores the words obulema (disability) and abaceke (weak people):

“While obulema is an objectified individual category connected to citizenship and defined through the legal-political realm, whether someone is an omuceke is determined interpersonally.”

Modern found that the terms cannot be accessed evenly:

“Obulema/disability-related arguments are largely out of reach of people living with certain types of impairment, particularly those considered to affect the mind or cognition, because the concentration of disability-related resources in entrepreneurship-based programmes meant that such people were liable to be ‘dropped’ from [Organisations of Persons with Disabilities] through progressive exclusion from the organizations’ activities.”

And for those left-out of the “disability” identity:

“The omuceke/weak person discourse is often more accessible for this group and can bring benefits for them. However, it does not offer connections to state and NGO resources and is particularly limited in relation to financialized and bureaucratic processes, as its power is rooted in specific relationships, not in the abstract rights and identities that govern the bureaucratic realm of law.”

And then as Modern points out:

“While citizenship-based and relational discourses can be used at different times by the same person, doing so requires difficult creative relational work, and the resources for creating this articulation are not equally available to all people living with marked forms of bodilymental difference.”

“Access bitch”

Someone doing creative relational (and technological) work to navigate his bodilymental difference is Andrew Leland, who describes himself becoming more of an “access bitch”.

Leland, writing from the US, shares how steadily losing his sight puts him in a phase where he is turning the screen-reader on his phone on and off. He alternates between using his sight or navigating the phone by its audio alone. And this changes his behaviour:

“Another dynamic that changes the more my screen-reader stays on: I'm becoming more of what I really want to call an access bitch: i.e., comfortable agitating and cajoling and generally being unpleasant in order to get the access I want, either for myself or others.”

As Leland shares, others have used the term before him, including in the song Access Bitch by Vogds, (feat. Yung Assata), a sensual disability-proud nothing-about-us-without-us advocacy-bop.

“Groundbreaking” new inaccessibility

In the United Kingdom, Christiane Link writes about “groundhog day for accessibility”. New rail projects are still designed without basic access considerations:

“A ‘groundbreaking’ new footbridge is set to span the railway line between Kennington’s Crown Hill View and Conningbrook Lakes in Ashford. With groundbreaking, I mean new barriers from the ground.”

“A very great grievance to Real People”

Also from the UK, a bold essay from Anna Landre takes to the extreme the attitudes implicit in current government policies towards disabled people. Writing satirically:

“I think it is agreed by all parties, that this prodigious number of Cripples in front of us, behind us, or (May God Forbid) beside us, in the present deplorable state of the kingdom where the rich political class are doing their utmost to afford second and third homes, is a very great grievance to Real People. And therefore whomsoever could propose a fair, cheap, and efficient method of making these Cripples palatable and useful to the Nation, would deserve so well of the Publick, as to have their statue put up as a Preserver of the Rightful Order of Things.”

Not just police and prisons

Mad Thinking are exploring how disability activism is under pressure from governments around the world.

Disabled people “often bear the bring of authoritarian policies”. These policies are not just the direct repression we might imagine, and can also be felt in democracies:

“Authoritarianism does not rely only on police and prisons; it also works through budgets and markets. Austerity, funding cuts, and the weaponisation of finance are central tools of control. In Argentina, neoliberal adjustments and rollbacks of disability protections have deepened inequality. In the UK, austerity and counter-terror funding schemes have shaped who can access resources and who is excluded. In El Salvador, emergency powers have gone hand in hand with the erosion of social spending. Manufactured scarcity allows governments to reward loyalty, punish dissent, and scapegoat marginalised communities.”

For more, see Mad Thinking's ongoing webinar series.

“People who only want the autism from me”

Over on Disabled Journalists Association, John Loeppky explored how disabled journalists get pigeonholed by editors only asking them to write about disability stories. Sarah Kurchak, autistic journalist and author told Loeppky:

“I have certainly seen [that] there are the people who only want the autism from me and then there’s people who say they don’t only want the autism from me. But magically it’s only the autism pitches that get accepted.”

Kurchak summarises the way she navigates this: “I will exploit myself if I need to pay the rent a little.”

Authentic storytelling

Over at the D*List, editor Olivia Shivas reflects on what she learned in two years of a website dedicated to new disability stories.

Shivas has found that “good relationships are the most important thing in authentic storytelling”. And part of that has been explicitly unlearning the habits she acquired in mainstream journalism.

“By getting to know each other and building relationships, our storytelling is richer because we’re on the same page and there’s a level of trust with how their story is told. Often as disabled people, our stories in the past have been - and continue to be - sensationalised and resort to stereotypes to sell the story.  Sometimes a relationship won’t lead to a published story, which would frustrate past-Olivia. But we see stories as a taonga [treasured possession] whether they are published or not; it is an honour to hear them anyway.”

I heartily agree: relationships are at the heart of the Debrief's storytelling also. As an editor I work intensively with contributors to find new ways to describe our experiences and share stories you won't read elsewhere.

“Better than most New Zealanders”

In the United States, a sheep named Kiki was born with fused joints and spinal issues. Her mother rejected her, as did the farm where she was born.

But a pet sanctuary looked after her, and found she enjoyed operating simple toys with her head. So they got her a custom-made electric wheelchair, which she drives by controlling the joystick with her head.

I found the story via D*List who, pulling the wool from our eyes, described it as a “a disabled sheep in the US gets it better than most New Zealanders”.

Shears,

Peter

Outro

Let your friends know. Sharing the newsletter is how people find it!

Connect. Get in touch. You can find me on Linkedin and Bluesky.

More from Kinanty: find her on Linkedin.

Help us do more. The Debrief is free thanks to reader support.

Acknowledgements

Thanks to Kinanty for the charming illustration of world-wide disability news.

Many thanks to all those whose disability thinking and writing is the basis for how we think things through together. And to the readers and organisations who support the Debrief.