This edition opens the Debrief mailbag to explore the personal and political issues that shape our lives.
There are the latest updates from the folk we heard from in reporting on Sudan, and reflections on the volunteer systems disabled people have to rely on in crisis.
I learn about seeing the future without fear, and get a deeper understanding of how disabled people can contribute to creating new systems of care.
We look at the videos making people accuse the Paralympics of mocking its own athletes and explore why we might not expect better. And, from Kenya to Brazil, there's the latest ways Debriefers are making change.
Before we get into it, to let you know we've been translating recent work:
- The reporting from Sudan is now also available in Arabic.
- Áine's piece on disability and climate is available in Spanish on Yo También.
Updates from Sudan
While I was publishing the reporting from Sudan, the family I wrote about had two major bombings near their house. Khadidja told me that power had gone out, and that fighting had just increased when the parties had supposedly agreed to a truce. Not having electricity or water was the limit for them, so they filling containers with water and thinking to start packing their bags.
Somehow the electricity company was able to conduct repairs that evening and they got reconnected. I haven't heard from Khadidja since then, but my messages are still getting delivered. So her phone is on. Allhamdulilah.
Doka, of the Sudanese National Union of the Physically Disabled, shared some further updates. A shell landed in front of their office in Khartoum North, and in the state of North Darfur, an office of the Union of the Deaf was damaged. All its work equipment – computers, printers, etc. – were stolen or looted.
Things are “truly difficult” for Doka and many other disabled people, still without basic necessities:
“No organisations work to evacuate us, and we do not have the money to get to safer states. The situation has become catastrophic.”
My guy Hamza has a business that trades with Sudan. He confirms that he's “never experienced anything as epic” as the system of extended family there. But that, yes, “this situation will really put it to the test”.
Magda Szarota shared an update on how volunteer support was put to the test in the response in Ukraine. From Poland, she's been part of efforts to support disabled refugees and those still in Ukraine. Together with Women Enabled International they've been sharing their experience with the UN in Geneva. Magda described how small grassroots organizations are supporting on disability because the bigger organizations still don't know how. These supports come at a cost:
“We are ‘humanitarian amateurs.’ We have neither technical knowledge on humanitarian assistance nor the tools and resources to provide this assistance in a way that does not affect our mental health or compromise our own personal finances in a context of economic crisis.”
Taming the tiger
I was talking recently with our illustrator, Kuan Aw, about ageing and worries I shared in my piece asking how we look after each other. I don't know how I will solve things if I need assistance with daily tasks. Kuan Aw tells uses mental exercises to “stabilize his mind”. He tells me he's “let go of many worries and genuinely accepted my life”:
“Not sure if you know I am a Buddhist. According to Buddhism everyone suffers. I live mainly for present moment. We plan but we don't think too much about the future. Don't imagine your future, it won't be the same as your imagination.”
The painting of the tiger is an illustration of this discussion. It comes from the story of a disciple of the Buddha. Pindola was a monk who faced the tiger that terrified the monastery by feeding it. They became friends rather than getting into a confrontation. The lesson Kuan Aw takes is one of taming our fears.
Alongside his painting, Kuan Aw has also started sharing his thoughts and art on on TikTok. For example, see a clip of him painting the tiger. His videos about accessibility in Penang, where he lives, are getting the attention of the local government, including through a profile in Penang State media (in Chinese – google translate gives a good idea).
We can sit at the table
My other exchanges about the way we look after each other have explored how these systems are structured, and the ways they're being changed. In Australia, El Gibbs is thinking about how users of supports from the National Disability Insurance Scheme (NDIS) can be more involved in their design and management. It raises complex questions about representation and decision-making, but one of her suggestions is a simple change that could be done tomorrow: give everyone who signs onto the NDIS a pamphlet about disability rights.
In the UK, Neil Crowther recommended Hilary Cottam's Radical Help: How We Can Remake the Relationships Between Us & Revolutionise the Welfare State. Cottam argues that our “once brilliant welfare state is out of kilter with modern troubles, modern lives and much of modern public opinion.” She says that in modern Britain “we don’t know each other any more”:
“I don’t think we can fix these systems, but I think we can reinvent them, with human connection at their heart. When people feel supported by strong relationships, change happens. And when we make collaboration and connection feel simple and easy, people want to join in. Yet our welfare state does not try to connect us to one another, despite the abundant potential of our relationships. Most of our services – for young and old people alike – are aimed at managing risk and getting by.”
The pandemic threw these dynamics into relief and also created new impetus to reforming care. Facundo Chavez Penillas was behind the report on support systems from the UN Office of Human Rights. He told me it's important to expand on the “core change” in care discussions:
“Thanks to the women's rights movement, there is a new conceptual logic of care. Care systems used to be designed by men in power, with social assumptions of people's roles, especially about women. It was an external way of organising care. Now it is women themselves putting the conversation on the table. Participation and representation are making a world of difference.
“That's where people with disabilities can come into these discussions on an equal ground. It's the one fight we have: ‘nothing about us without us’. We can sit at the table. The disability movement can bring what we know about organizing care systems, structuring peer support, and the political challenges to service provision. A cross movement collaboration will be unstoppable.”
How would you like to be called that?
Michael, a friend of the Debrief, wondered what did I think about the Paralympic Tiktok fracas? Answering that question needs a bit of investigation into representations of disability and the uneasy relationship between disability rights and the Games.
The International Paralympic Committee has been posting videos of athletes with supposedly hilarious soundtracks. A video of cyclist Darren Hicks is one of the examples at the centre of the emerging controversy. Hicks right leg is amputated, so cycles with his left. The soundtrack calls “left.. left... left.” This CNN article has a good overview of the videos critiqued and the mixed opinions on them.
Narratives around Paralympic athletes have to navigate public stereotypes and cliches around disability. Some of the athletes featured, including Hicks, find the videos funny, and welcome a new approach to reach a broader audience. Others echo critiques made on social media that it's mockery, turning the sport into comedic entertainment.
TikTok thrives on comic juxtapositions of audio and video, but activist Imani Barbarin says that using the audios with disabled people “changes the context almost entirely”. She asks why they don't feature more about the sports and the athletes themselves.
The Games are now presented as “leaping towards a more inclusive society”, but they haven't always embraced the same narratives as the disability movement. As recently as 2012 the then-president Philip Craven said “it's not disability anything... How would you like to be called that?” In subsequent years he changed his tune, aligning the Games with “promoting the rights of persons with disabilities”. And by 2021, for the Tokyo Paralympics, disability rights organisations worked jointly with the Games on the shared campaign WeThe15.
But just because the Paralympics now uses the language of the disability movement doesn't mean our values are aligned. The sports are structured by classification systems based on impairment, only ever partially successful on their own terms. In a broader view we can see them as just different regimes to manage ableist categorisations. Two disability sports researchers pointed to how the WeThe15 campaign papered over those differences:
“The Games are exclusionary because they are meant to be so — only certain bodies that experience disability are eligible to compete.”
The Paralympics TikTok videos lean into physical difference, and that is the source of their entertainment and discomfort. I appreciated them for getting out of standard presentations and finding a wider audience. New forms of representation are much needed, and TikTok has been a rich ground for making them. I don't look to the Paralympics for a fully inclusive environment. It is based on harsh divisions among people and impairments. These videos show that.
Lights, camera, ableism!
Debriefers around the world shared some of their latest projects:
In Diagnosis Grad School, Olivia Dreisinger is exploring the challenges disabled students and academics face at universities:
“Lights. Camera. Ableism! Join your exhausted host as she sneaks disability past the inaccessible front steps of the Ivory Tower, and podcasts her way through grad school.”
Lauren Avery has been working with Black Disabled Lives Matter (VNDI) in Brazil. She celebrates their briefing note on the situation of black people with disabilities as an important example of “intersectional advocacy within the international anti-racism space”. We both feel that when Brazil gets inclusion right, it offers lessons for the world. VNDI themselves go from strength to strength:
“Several members of VNDI have also been given positions within Lula’s government to address intersectional discrimination along the lines of race and disability, which is a huge win.”
In Canada, Robert Melanson is writing The Intersection newsletter on his own and others' experiences of surviving institutional care and disability: “Impairment shouldn't need to become disabling and disability shouldn't be a death sentence in a wealthy country like Canada.”
Anna Martin shared some of the charming educational-entertainment that eKitabu is making for children in Kenya. I See The Light is a new episode of Ubongo Kids with Kenyan Sign Language and subtitles built-in.
Rebecca Robinson shared a film about her cousin Max Stainton and his trek to the Everest base camp. According to the review, “the two weeks are physically painful and draining; on the toughest day he’s kicked by the horse four times and ends up walking uphill for six hours.”
A breath of fresh air
As always thanks to those who have been encouraging and supportive of our work. Áine's piece received particular appreciation, including a “¡Wow!” from iWheelLoveU. They thanked Áine for the piece, and the love it's written with, “Sometimes we feel we're fighting alone against everything, and you've given us light and a breath of fresh air.”
Thanks to Tan Kuan Aw for our conversations and the illustration of the tiger. And to Áine Kelly-Costello for feedback on a draft.
Thanks to all my correspondents, and the many more not named here, including Eliana Rosas Aguilar who has been helping me understand how the Paralympic Games relates to disability inclusion.
Thanks to readers, Sightsavers and K. Li for the support that keeps the Debrief going.