Ability to reimagine ourselves

Dear Debriefers,

Imagine we're in 2050, and disability rights are real. What would it be like?

This question is the prompt for the first open call for writing on the Debrief: Letters from the Future. I can't wait to hear your answers.

As well as opening the invitation for cosmic correspondence, this edition opens up the Debrief mailbag to find out what's keeping us busy in the present day.

I breathe together with readers who also use ventilation, or who are also seeing changes in their disabilities.

And a range of reactions to recent pieces explore sign language history, independent living and the elitism of events held in Geneva and New York.

About this edition

The Debrief can publish and commission new work thanks to support from readers. Thanks to Alan for a new contribution.

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

Kinanty Andini is an illustrator and digital artist from Indonesia.

Letters from the Future

We need your help to imagine what a better future could be. Get in your time travel machines and let us know what our future could become.

It's easy for us to get taken up with the problems of the present day - surely we have enough of them. But what would the world look like if disability advocacy campaigning was totally successful?

Letters from the Future is the first open call for writing on the Debrief. I'm excited to hear from the Debrief community and beyond, and happy that there's a way to continue to make more space for new writers on this newsletter.

Please submit short letters from a future where disabled people have equal access and opportunities. What does it feel like? How did we get there? Were there any negative consequences?

We will publish our five favourite entries and pay £100 for each published entry.

See the call for more details, and do share it or help amplify our post on Linkedin.

This call is funded by reader contributions to the Debrief. Favourites will be selected by me and Celestine Fraser, who worked to design the call.

“Don’t worry Peter, just you wait.”

In Breathing In I wrote about discovering I needed a BiPAP machine, and the fear and internalised prejudice it brought up.

Beatriz wrote me a beautiful note about her own journey through the seasons:

‘I too struggle very much with my physical decline. I feel it in two ways: first, throughout the years; I lost many physical abilities through my life and it doesn’t really get easier, even after many losses. Second, within the year and across seasons, I feel it too; in summer, with lighter clothes and warmer weather, I feel stronger; in winter, covered in warm clothes and surrounded by cold air, my mobility is restricted. Grieving mobility losses every autumn doesn’t get easier either, although I know it happens every year, and I know that it eventually gets better again (I keep fearing the year it doesn’t, though).

With this said, I too use a CPAP machine to sleep. [The CPAP is a similar machine to the BiPAP.] I have used it since I was a child and it is tied with my wheelchair as my favourite assistive device. It makes me sleep more comfortably and allows for a true quality sleep. I have tried sleeping without the CPAP, but it has proved itself as indispensable for me. Some nights, when I put it on before going to sleep, I feel such relaxation with the strong push of air it sends into my lungs. My point is, I really like it and, because I’ve used it since I remember, I never associated it with loss, on the contrary. Similarly to my wheelchair, it always meant comfort and quality of life.

Reading your newsletter, I kept thinking to myself “Don’t worry Peter, just you wait. I’m sure you’ll get used to it - even better, I’m sure you’ll end up loving it”. And this thought made me rethink all of the times I grieve mobility losses too. I hope my feelings about the CPAP comfort you in some way.

And now, every autumn, when I see myself once again unable to lift a cup to my mouth, I will remind myself this is a loss many other people have felt before, and it’s okay. There’s life after these losses and I believe it is as fulfilling as our current one. In fact, some people might have never been able to experience my levels of mobility - the same way I don’t remember a life without the CPAP - and their life is good too, and it’s worth just the same.’

“Breathing easy and rising refreshed”

As well as Beatriz, it was great to hear from many other BiPAP and CPAP users. Some of you have been using it for many years, or others, like me, adapting to it now.

Also like me, Heather Watkins had concerns about whether using a breathing device would be “unsexy”. But as she shared in a blogpost about her “Big Ole Sexy Vent”:

“Turns out breathing easy and rising refreshed from a full night’s sleep sans migraine can be quite the aphrodisiac.”

“Ability to reimagine ourselves”

Outside of readers using ventilation, many shared how the article resonated with other changes in their own health or disabilities, and for some, how they were grappling with fear around them.

Qudsiya Naqui, creator of Down to the Struts, told me about her experience of vision loss:

“You perfectly capture what the experience of gradual vision loss has felt like for me, and the constant relearning that we should keep a comma at the end of changes in our bodies and minds, rather than a period.

Honestly, it is that ability to pivot, to re-orient, and to reimagine ourselves in the most visceral way that makes disabled people and disability culture, such a brilliant antidote to ableism, even when we experience internalized ableism ourselves.

Thank you for your vulnerability, and the care with which you treat such experiences. Wishing you peace in this new phase.”

Apologies to the deaf community

I shared how Hamburg State in Germany apologised to the deaf community for having banned sign language in schools.

Readers welcomed news of the apology, and pointed to how the problem went beyond Hamburg.

Indeed, the 1880 congress in Milan that passed a resolution banning sign language was an international gathering that led to changes in teaching across European countries and the United States.

This approach then spread around the world. For example, Asli Ozyurek pointed to how German educators “imposed” the oralist approach in Turkey as well. See previously on the Debrief for how European approaches of segregated education spread around the world.

And from the Netherlands, Roos Wattel wrote:

“It would be nice if the Netherlands, or at least the schools Koninklijke Kentalis and Koninklijke Auris Groep would apologize to the deaf and hard of hearing for the suffering caused by 100 years of ban on sign language in deaf education.

[The International Congress on Education of the Deaf] apologized in 2010, but as far as I am concerned, the schools and countries in which this policy has taken place should also apologize to the deaf community.

The suffering of this unprecedented audism is indescribable and continues to affect generations.” (Translated from Dutch.)

See more about the 2010 apology for the Milan congress.

Incredible strength and capacity

Alessandra Sousa wrote about how people with disabilities were affected by severe flooding in Southern Brazil last year. Her reporting showed how people were supported more by solidarity than formal systems.

Nino Gvetadze wrote that she read the article “in one breath”, and how it resonates with the work that she does on disaster risk reduction:

“It’s incredible how much strength and capacity exists at the local level—among disability organizations, service providers, and persons with disabilities themselves. The examples in this article are powerful reminders of what can be done, even in the most difficult circumstances.

And yet, as I read—right up to the final full stop—I kept hoping to see at least one strong example of a local government stepping up, learning, and responding meaningfully. But those examples remain far too rare.

We talk a lot about barriers, gaps, and unmet needs—but the pace of progress is painfully slow. I can’t help but wonder: is it negligence? Ignorance? Incompetence? Either way, it raises questions about accountability and political will.”

Independent living and interdependence

Last week Rachel Litchman wrote about her harrowing experience in rehab hospital in the United States for-profit healthcare system.

The questions of interdependence and care were picked up by Teodor Mladenov, who related to them to key themes in his work on the philosophy of the independent living movement:

• “Care professionals often mistake independent living for self-sufficiency (coping without support).
• Independent living is a form of interdependence – yet not all interdependence enables independent living (a core, often missed insight of the Independent Living Movement).
• Professional power – especially in institutional settings – demands sustained critical scrutiny, particularly when it co-opts the language of ‘independent living’ and ‘care’.
• Peer support is foundational for independent living, alongside other pillars like accessible and affordable housing, personal assistance, and adequate assistive technology.”

“Practicing inclusive intersectionality”

In July, I published an interview with Luciana Viegas from Brazil, on opening the disability movement to black people and other marginalized communities.

Qudsiya Naqui also appreciated this piece, writing on her newsletter Getting Down to It:

”I highly encourage you to check out Peter Torres Fremlin’s powerful interview with Luciana Viegas, an anti-racist and anti-ableist activist in Brazil. Luciana founded the group, Vidas Negras Com Deficiência, Black Disabled Lives Matter. I particularly love Luciana’s approach to practicing inclusive intersectionality.”

Qudsiya highlighted this quote from Viegas in the interview:

“I believe that we often discuss intersectionality in the wrong way, imposing a hierarchy of oppression. Where someone then has more authority to speak because they face more oppression.

It’s like we created a monster of intersectionality. So when someone comes down to VNDI and says they are suffering more violence we say wait a minute, and we look after the monster.”

“Elitism inherent in having people travel to Geneva and New York”

Alberto Vásquez Encalada's piece on the problems with professionalisation and the disability movement has become one of the most-read Debrief pieces.

And it's still getting reactions since the initial correspondence about it. Tina Minkowitz commented to echo and react to its key concerns:

“There are still those of us who are both grassroots and professional, an uneasy space where we get pigeonholed from both sides but it's the courageous space. And we continue to bring people in, sharing our knowledge as we go. The space to do this has been narrowed increasingly over the years, by many forces including those who came in to the work as career professionals and those who elevated career professionals (disabled and non-disabled) over [Disabled People's Organisations] representatives.

The elitism inherent in having people travel to Geneva and NY, and the consociational structure of our peak bodies created the vulnerability for this to happen. (Consociational means a group whose members are representing other entities, who come to know and associate with each other more than they do with those they are representing. To a large extent I think this happens in the disability movement, including beginning with the International Disability Caucus at the Ad Hoc Committee.)”

Minkowitz's comment is worth reading in full.

Skating off

After I shared an amazing adaptive skatepark in the United States, Elizabeth flagged this German organisation Sit 'N' Skate which does wheelchair skating meetups. Here's one of their videos.

All best, and do stay in touch!

Peter

Outro

Further reading. There is a back catalogue of Debrief newsletters online, as well as a library of disability news from 160+ countries.

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Acknowledgements

Thanks to Kinanty Andini for the illustrating an accessible city of the future, to Celestine Fraser for designing the open call and to Áine Kelly-Costello for feedback.

Many thanks to all the Debrief correspondents and to the readers and organisations who support this work.