Lots of proteins
Dear Debriefers,
This edition opens the Debrief mailbag to find reflections on the global disability movement, priests using wheelchairs and much more.
Readers pick up on recent editions to think through their own work and to have new discussions around disability.
I love the thoughtful and caring reactions this newsletter evokes, and I'm honoured to share some of them with you today.
About this edition
Peter Torres Fremlin is editor of Disability Debrief and is from the UK.
Kinanty Andini is an illustrator and digital artist from Indonesia.
Disability Debrief holds this space for our community thanks to support from readers. Thanks to Mariela, Sebastian and Steven for new contributions.
“An essential news and information source”
The first reaction from readers has been a very tangible one, in response to my fundraising call.
The Debrief is looking for resources so that we can continue serving the global disability community and sharing stories you won't read elsewhere. Making independent disability media has gotten harder, but also more important.
Thanks to a great response from readers, individuals and organisations have come forward to contribute £6,700 ($9,000) in the last month.
One of those readers is Clare Mahon, who loves supporting the Debrief as “an essential news and information source for anyone interested in disability rights”:
“It doesn’t take much for individual community members to contribute to this important work — I encourage you to sign up and pay the very reasonable subscription fee for this newsletter. I’ve learned something new each time I open the emails, and the commitment to sharing diverse stories and information is impressive.”
If it's comfortable for you to join Clare – and you haven't contributed already – you can make a one-off or recurring contribution to the Debrief's work.
Lots of proteins
Last week's piece from Alberto Vásquez Encalada, We wanted to change the world, struck a chord with many readers. In the words of Andy Imparato, “This is one of the best reflections on the global disability movement that I have read in years.”
Nena Hutahaean found Alberto's piece resonating with her own questions:
“This writing is juicy, lots of proteins (in Indonesian, we say ‘ini daging banget’ — it means the content is rich, deep, and nourishing).
Lately I’ve been sitting with a lot of questions, about calling myself an activist, about the real impact of my work, and about whether I’ve truly been offering a safe space for others, or just compromising with those in power under the guise of solidarity or validating something that shouldn’t be validated.
Do I really deserve to call myself a disability rights activist? or have I only been moving because of the project? have I been creating space, or just enabling?”
The article also spoke to Zara Todd:
“As someone involved in the disabled People's movement when I was a child, I feel like I have seen it at its best and worst.
We have moved the disability agenda so far in my lifetime but I often wonder at what cost?
I look at disabled people's organisations worldwide struggling to stay afloat because of limited and inconsistent funding, meaning many organisations do not have the capacity or opportunity to build people or their organisation.
I have seen a whole industry develop around disability, which profits off the back of the work of the movement, rarely giving back.”
See Zara's post for suggestions on how folk inside and outside of the movement can mitigate these dynamics.
All living contradictions
In further reactions to Alberto's piece, many noted how the questions of professionalisation and its relationship with activist movements applied to other areas of social change beyond disability.
Among them was Joe, who added to the mix the concept of “isomorphic mimicry”, whereby larger organisations imitate what activism looks like, but not what it does:
‘I’d argue there may be superficiality in terms of “looking like activists” (perhaps unconsciously and with noble intent) and getting the kudos but especially the funding that goes with it’.
And another reader for whom it raised personal questions was Federico Martire:
“While reading [Alberto's] piece, I couldn't help but feel a mix of enthusiastic push to do more and better for the grassroots organizations fighting for disability rights and an inevitable sense of guilt for being one of those professionals pushing for normative standardization. But, hey, aren't we all living contradictions?”
Those are definitely contradictions I also feel reading Alberto's writings. I have personal connections with disability – and the disability movement – but my entire career has been primarily a professional, rather than an activist one. (Although given the type of person I am, the way I inhabit the professional role is often by suggesting people do things differently.)
A future disability rights architecture
Speaking of the tensions between needs of big organisations and the needs of disabled people, many readers appreciated my reporting of the Global Disability Summit. And Stephen Thompson neatly summarised the event:
“For me the experience was a chaotic mixture of high level promise but grassroots concern about the future.”
My piece contextualised the summit as coming together as our sector fell apart. Jürgen Menze, saw the Summit as a “a very timely and much needed counterweight and unifier”, and guide to go forward:
“While already resisting now and doing damage control, we will have to count our losses and collectively shape a future disability rights architecture across the globe - also acknowledging and addressing a persistent lack of collaboration among relevant stakeholders and the marginalisation of certain groups within the disability rights movement.”
Leading the world from a wheelchair
In the Chair of Saint Peter, I wrote about how Pope Francis was, in the last years of his life, the most prominent wheelchair user in the world. Many picked up on how his example is transformative for how we think about leadership. Jo-Ann Garnier wrote that:
“For me Pope Francis, leading the world from a wheelchair, reminds us that true strength lies not in standing tall, but in lifting others through compassion, humility, and courage. What a legacy of love that speaks powerfully to the heart of every person.”
And on Disability Thinking Weekday, Andrew Pulrang was characteristically thoughtful in reflecting on the Pope's legacy as a disabled person, and as someone who gave attention to disabled worshipers.
Special dispensation
Meanwhile, the case of Pope Francis using a wheelchair led Madeline Close to tell me the extraordinary story of Leo Close, “widely recognized as the world’s first [Catholic] priest to be ordained in a wheelchair.”
Over to Madeline:
‘Born in Drumcondra, Dublin, in 1934, [Leo Close] suffered a life-changing accident at age 23, falling from a bridge in Paris and breaking three vertebrae, which left him paralyzed from the waist down. At a time when church tradition required priests to stand to celebrate Mass, his path to ordination was far from straightforward. He received special dispensation from Pope John XXIII and was ordained in 1959 for the Diocese of Dunedin, New Zealand, becoming the first priest to be ordained in a wheelchair. To fulfil the requirement of standing during Mass, he used a specially designed standing frame.
Father Close’s impact extended far beyond his priestly duties. He was a pioneering advocate for people with disabilities, co-founding the Irish Wheelchair Association and serving as its first chairman. His love of sport led him to compete in multiple Paralympic Games, representing both Ireland and New Zealand in athletics and table tennis. He captained Ireland’s team at the inaugural Paralympics in Rome in 1960 and later helped establish the Paralympic movement in New Zealand, where he also founded the national wheelchair association. For his contributions, he was appointed an Officer of the Order of the British Empire in 1975. Father Close became a familiar figure in New Zealand, regularly appearing on television with a “thought of the day” segment.
Due to the rarity of the ‘Close’ surname in New Zealand, there were only two listings in the era of printed phone books. My father, also from Ireland, and Father Close often received phone calls for the other. They were distant cousins, and there was a strong family resemblance. I have childhood memories of Father Close visiting us and being in awe as he was on TV!
Nowadays, I’m aware of how he changed things within the Catholic Church and how it became acceptable for Pope Francis to be seen using a wheelchair. Both Pope Francis and Father Leo Close have, in their own ways, redefined what it means to serve while living with disability. Their examples challenge the Church and society to embrace inclusion, adaptability, and the enduring dignity of all people, regardless of physical ability.’
Armed robber turned priest
Madeline's story led me to google Papal dispensations and rules for Mass. I couldn't find the info on whether it's still required for Catholic priests to stand (better informed readers please do let me know).
However, as well as more about Leo Close, I also found a wheelchair-using Benedictine priest from 1954, in the United States. Father Alfred Meister acquired his disability after being ordained. He also got special dispensation to say the Mass while using his wheelchair, and had adaptations made to his altar.
Anyway, one google leads to another, and this one about priests led to this story in the UK, about Matt Martinson: an “armed robber turned priest”. In his words, “I’ve learned more about God and my relationship with him by being in a wheelchair.”
Quiet, complicated truths
Celestine Fraser's essay on Going Off Script explored the complicated connections between disabled and queer identities. Lia put into words the emotional reaction that many readers felt:
“The way you talk about shame, queerness, disability, it’s so honest and beautiful.
This feels like a love letter giving voice to the quiet, complicated truths many people carry and a reminder that we are not alone in rewriting our scripts.
Thank you for sharing something so personal and powerful. 🩷”
And Andrew Pulrang commented on how the article helped him:
“It's hard for me as a straight disabled man to know how to acknowledge and understand Pride Month. Writing like this on the overlaps and interconnections between disability and sexuality helps a lot. At the very least, I can relate to feeling like my body and personality are intrusively evaluated and policed by others, especially when I was a child and a teenager. That's something LGBTQ+ people with and without disabilities also experience.”
For more about these intersections, Social Development Direct picked up on the piece to share their own research on the topic, an evidence digest on LGBTIQ+ and disability inclusion.
Understanding of loss and grief
In Go Give Them Their Flowers, John Loeppky wrote about grief and memorial in disability community. El Gibbs read it in the morning: “it is too early to bawl this much. Such a great piece”.
It was also a piece I felt deeply. I did the final edits as my dear friend Pedro – someone that welcomed me into disability community as I did my Masters in Rio de Janeiro – was in intensive care. I pressed publish the day after he passed away. Pedro was one of the people that showed me what my life could be.
I'm incredibly grateful to John's writing and Kinanty's illustration for such a beautiful tribute on an issue so close to so many of us.
And Melissa Miller echoed that it was something on her mind as a parent:
“I have been thinking about [grief] recently having seen far too many of my son's school friends pass away at a young age and often quite unexpectedly. Children with complex disabilities are growing up with friends who suddenly disappear from their lives and there is often little support available to facilitate understanding of their loss and grief.”
Melissa also had insightful remarks as to what would be helpful for her son and his friends to process these losses.
Not a safe driver
In A Good Friend of Mine, Ida Putri shared her love for Pinky, her wheelchair, and also how her need for speed makes her a dangerous driver. Lucy responded:
“My daughter has permitted me to share: she also has short stature and she also has a connection with her AT - ‘Trikey’ - a pedalless trike. My husband helped her paint it bright purple at one stage 💜”
Being in Australia she is fortunate most of her surroundings are accessible, Trikey allows her to get from her classroom to the schoolyard, and around streets and shops etc, without tiring as much. She is also joyfully not a safe driver!
I read her a paraphrased version of your article and she loved that part - I didn’t realise until reading your words how much it meant to her to become the fastest one. Other parts also resonated deeply. The article also helped us both reflect on the differences and privileges of living in Australia (and for me, reaffirming importance of AT and accessibility). Thank you so much for sharing.”
Ida responded that she hopes to meet Lucy's daughter one day and to have a race.
Progress needs pilots
In A Scrambled Breakfast, Ria Andriani wrote about how artificial intelligence opened up visual access but closed down social change. Lucas Rodrigues commented:
“AI gave us the suit, but people stopped showing up to the fight. Progress needs pilots, not passengers.”
On our own terms
And to close out today, I'm happy to share a podcast conversation I had with Milan Šveřepa of Inclusion Europe.
I was very happy to take our exchange deeper, and to explore how we both feel the need to shift the disability conversation to one had on terms set by the disability community itself.
And Milan, a faithful reader of some years, had his own description of the Debrief:
“You put a lot of words into the newsletters. It's a lot of work to get through it.”
Well, I'll be back with more words next week. In the meantime, keep up the good work,
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 another cute illustration.
Many thanks to all these correspondents and all of those that read, share and react to the Debrief. I love hearing how it is part of the way you think things through.
And thanks to the readers and organisations who support the Debrief.