This edition opens the Debrief mailbag for reflections on the latest disability news.
Across protests in Paris, the Paralympics, or the “sickness in our work”, readers explore the ways exclusion and inclusion are intertwined.
Speaking of the mailbag, please carry on sharing your experiences of how our work on inclusion is not very inclusive. I'll be exploring those in a later edition to get further into how we can practice what we preach.
Protesting the Protestors
In the last news update I highlighted protests, including those in Paris against inaccessibility of transport ahead of next year's Olympic Games. It looked like positive news that helped secure investment from government. But who's behind the protests, and is the government going in the right direction?
A disability activist warned me to go carefully in both areas. Sometimes the organisations in France advocating for “inclusion” are the same as the ones running institutions for disabled people. A confusion between medical organisations and those of disabled people themselves has “led to systemic discrimination against persons with disabilities”, according to comments from the UN Committee on disability rights.
APF Handicap were the organisation behind that protest and they lament a “generation that's seen the the trains go past and hasn't been able to get on”. But what about the generations of adults and children in the “establishments and structures” run by APF Handicap? Non-profit organisations that favour a segregated approach were also critiqued by Catalina Devandas-Aguilar in her 2019 visit as UN Rapporteur.
Unfortunately this also means we need to look carefully at government investments in disability rights. Part of Macron's commitment was to “deinstitutionalization” but a recent article shows how those commitments have become double-speak. It is “deinstitutionalisation without deinsitutionalizing”. In the article, the historian Gildas Brégain says this is typical of public policy on disability: “you have the words, but nothing behind them”.
Rather than support people to live in the community, the government will continue to invest in segregated living arrangements. APF Handicap, who will receive money to implement provide them, ask if a person needs “this solution”, why they should be deprived of it? But that's the problem: it's not clear whether the people who need the segregated solutions are disabled people or the institutions supposedly supporting us.
Games of inclusion or exclusion?
While we're making cocktails of inclusion and exclusion, I had some further conversations about the Paralympic Games, including with former athletes. Following my comments on Paralympic tiktok videos, they helped me understand further the gap between the Games and work on disability inclusion and rights.
On the one hand the Paralympics is the most visible representation of disabled people in the world. Participating in sports has changed the lives of many, and watching them has broadened all of our imaginations. On the other hand, all hints point towards plenty of ableism within the sports and their administration. And this discussion started because of the potential harms of the Games' public messaging.
Readers reminded me of stories that illustrate these dynamics. US athlete Becca Meyers withdrew from the Tokyo games because of a lack of assistance. In Rio 2016 she won a gold medal even though a lack of support and accessibility meant she started skimping on meals. A recent investigation described classifications for competition as regularly bent and broken, and along similar lines I was recommend the BBC series on Fake Paralympians.
The International Paralympic Committee (IPC) are proud that the Paralympics are “the world’s number one sport event for driving social inclusion”. But it sounds like the IPC, like other global sports bodies, don't love people going off message and aren't so interested in discussing what they might be getting wrong. If there's so much social inclusion, how come it's so hard to talk about?
A sickness in our work
Thanks to the many kind responses to my essay exploring the Rana Plaza building collapse and how I worked through my own part in that. It's been good to get back in touch with colleagues from then.
Many of you have been kind to join me, through tears in your own eyes, in the prayer that failure does not harden our heart too much. Several of you do so from witnessing the pain of refugees, trying to assist them, and knowing it's not enough. I send you love, for your work, for yourselves.
Some of you wrote me with reflections on non-profit work. It made one reader think of The Careless Society, a book by John McKnight which explores the damage “professionalized services” can do to communities. A dear friend, working in international aid, said “I suppress my feelings everyday to survive in this industry”.
Another friend saw an illustration of the “sickness in our work, dehumanized even in the most humane and intimate moments.” As we ask people to share their suffering, we process it for our needs. The dignitaries and bureaucrats can meet with the survivors of the collapse, but for their own purpose:
“All these people can meet M, K, and S. Can come to their home. Can learn about their suffering. And it’s just turned into some artefact of the crisis industry. A photo, a press release, a case study but all for a moment of time because what happened next is not relevant. We (whoever we is) didn’t need them to have a sewing machine.”
That day my mum and dad never came
Among explorations of the news I shared the feature on Ardiansyah, a man with schizophrenia in Indonesia who, rejected by his family, seeks refuge in a mosque. The filmmaker, Kinanty Andini, told me she featured his story because it describes the lives of many people with psychosocial disabilities in Indonesia and the exclusion they face from their own families.
Watching in England, the video touched Nicky J Cook who saw in it her own experience and responded with this poem:
When I see
people like me
in whatever state
I see people showing
ignorance, fear and hate.
When it came
to illness creeping in his teens,
did that man in in Indonesia
get ideas of blame shame gain or pain?
Like me that day
my mum and dad never came
to pick me up for weekend fun and games.
Sitting at the children's unit asylum door
I cried for 2 days and nights or more.
I don't know what's
happening in Indonesia
and send wishes it's easier.
Looking to migrate somewhere colder
The article Áine wrote last year on how heatwaves affect disabled people is still being found and, sadly, ever more relevant. Writing from Latin America, Dal Cecil Runo commented:
“I am one of the many disabled people desperately looking to migrate somewhere colder and darker (blind with extreme light sensitivity + who knows what undiagnosed physical chronic fatigue problems). It’s nearly impossible to do the most basic things in constant heat all year round, let alone find and maintain a regular job. Being blind in a visual world is hard enough, now add the heat and brain fog and fatigue. Not many people think about this. Thanks for sharing.”
And meanwhile, in Spain, my twitter bro Cesar flagged the new research on how last year's heatwaves in Spain affected disabled people. Human Rights Watch spoke with disabled people who shared the serious negative impacts on both mental and physical health, and how they felt abandoned by their government.
Last to catch the train
My saudades of studies in Brazil let me catch-up a bit on what people are doing there. Researcher Marco Gavério, reflected on the journey of disability within Brazilian universities and how disabled students were the last to “catch the train” of affirmative actions. He warned that the data might not reflect yet the vicious cuts in support universities have faced. In the context of these cuts, and a wider economic crisis, will the disabled students that have just secured access to universities be able to continue their education successfully?
Marco points to his own entry into university more than a decade ago. There weren't affirmative actions for disabled students, but he benefited from the supports that were more readily available then, of grants, accommodation, etc., as well as the economic situation that meant his family could support too.
Marco is one of the generation that has helped open up the study of disability in Brazil. Another friend, whose work I mentioned last time, Anahí Guedes Mello also shared her article on producing crip thought in the Global South exploring the work of a university's disability studies centre to politicise disability, and diffuse outwards the ideas present in disability studies.
Are people with disabilities able to engage?
Many Debriefers were at the big UN meeting on disability in New York, the 16th Conference of State Parties (COSP). Thanks to those who shared about it on #COSP16. As well as livetweeting, Emily Horsfall, who works on campaigns with Sightsavers, shared reflections with me.
Emily celebrated the chance to join the many that were there, and appreciated that sexual and reproductive health featured in discussions. Her own work there was gathering on a campaign asking for a “rescue plan” to realise the Sustainable Development Goal's pledge of leaving no one behind.
Emily left COSP wondering about the barriers in the way these events work that mean “we are leaving people behind from progress”:
“There are still fundamental issues with UN systems that stop people with disabilities from engaging in these platforms. The cost of travelling and attending as well as challenges with visas and support staff means we are still not hearing from those most marginalised at these important events. It was good to see adjustments such as captioners and translators in the main session and some side events, but how much of this is present at other UN events, or everyday business? Even when in the building, are people with disabilities truly able to engage?”
The next frontier
“Triumph of the philosophical.” In Nigeria, Alexander Ogheneruemu has been writing a series on disability champions. The latest features Olawale Alade, a deaf nurse from Nigeria working in the UK. Olawale acquired disability as a young adult and the article details the connections, people and perspectives that helped him make his new life.
“Like a second home”. I've been enjoying the UK Disability and Heritage Hub reading group. After a recent discussion, researcher Kirstie Stage shared an episode exploring the 200+ year history of deaf clubs in the UK, and their precarious situation today.
Climbers with disabilities. After I shared the news of an amputee going up Mount Everest, Josh told me about other climbers. Muhammad Hawari Bin Hashim, a deaf man from Malaysia got to the top, as did American deaf couple Scott Lehmann and Shayna Unger. 2023 has been an “impressive year for climbers with disabilities”.
“The next frontier.” I spoke about trends on disability inclusion with Gopal Mitra who leads the disability team at UNICEF. Gopal celebrated the increased knowledge and good practices that exist now and said that “the next frontier is scale”. He illustrated this by showing how developing procurement could dramatically lower the price of assistive technology. In Rwanda, for example, UNICEF-assisted procurement of hearing aids reduced their price from $2,000 to $118.
It's wonderful to be in touch with so many of you. Do let me know what's the next frontier for you. Cheers,
As ever, thanks to Áine Kelly-Costello for review.
Thanks to all my correspondents, and the many more not named here. Thanks to readers and Sightsavers for the support that lets us do this work.