There's plenty to explore from last week's curated news. Today we spend a bit more time with some of the stories there.
We start with stories from wartime Ukraine, migrate across Mexico and then head to higher education in Brazil. I share about my studies in Rio de Janeiro although somehow without mentioning the cerveja that fuelled them. We close with a couple of brief highlights and quotes of the month.
Meanwhile, many Debriefers are following or taking part in the annual UN disability conference. I would love your help to be able to cover the highlights - let me know what's been interesting for you, and I'll share in an upcoming mailbag.
People still get cancer during wartime
While Mariupol was under siege last year, Svitlana and her 73 year-old father Nikolai were cut off from the world in their apartment. Nikolai's mobility got worse, and his medications weren't available. When Russian soldiers entered their building they forced others to the basement, but Svitlana convinced them to allow Nikolai to remain, and took him one meal a day.
Thanks to a recent report from the International Disability Alliance, their story has been documented, alongside those of many other disabled people inside and outside of Ukraine. Detailed interviews show the complexities of accessibility in crisis and what people did about it. The report puts a human face on the information we have on what's been happening to disabled people.
When the Russians let them leave, Svitlana and Nikolai travelled to Donetsk, where they got medical treatment. But after initial tests that suggested Nikolai had cancer, fighting and lack of supplies stopped them getting the catheter, medicines or further diagnosis he needed. They continued a harrowing journey out of Ukraine, and via Estonia managed to get to Latvia where they have been connected with support from a disability organisation.
While they got out, many other disabled people remained where they were. As well as the considerable barriers and difficulties in evacuation, uncertainties about the destination also held people back: would there be medical assistance or accessible facilities? One 80 year old blind man returned to the risks in Donetsk because of the lack of access and support in the nursing home he'd been evacuated to.
These real stories show us nuance and complexity within the overall picture of awful circumstances. They show the services and supports that broke down, and the often volunteer connections that have been formed. Accessibility gets more complicated and urgent, and sometimes needs to be negotiated with enemy soldiers. Experiences of disability intertwine with the violence, health situations, and a fight for survival. People still get cancer during wartime.
Bad people took pity on us
A much-needed investigation of disability and irregular migration has been done by our friends at Yo También, a disability news site in Mexico. Focussing on stories of women with disabilities, the reporting shows injuries and disabilities people can acquire while travelling and what happens to them afterwards. It also shows how disability can be one of the factors that set people off on these dangerous and sometimes violent journeys.
One couple from Guatemala had a one year old girl with a cleft lip and palate that could not be operated there. So they set off together with their other daughter to cross Mexico to the US. When their group was robbed along the way, the “bad people took pity on us when they saw the baby, letting us pass. They took money from the others.” This family got to the US two times, and were returned to Mexico on both occasions.
Disabled people face considerable barriers in migration, including some countries deliberately trying to exclude disabled people from arriving. A recent discussion paper from the International Disability Alliance looks at the disability dimensions that need to be taken into account when authorities decide who will get protections granted to refugees. It points out that disability can be linked to persecution or other reasons that make people leave their countries. And, further, lack of accessibility or adjustments in asylum processes can lead to not being able to make one's own case consistently.
Access to academia
My own journey in Brazilian higher education was a masters' programme from 2009-2011. I landed in Rio de Janeiro to study social anthropology, my mp3 player blasting baile funk. That degree became my academic entry-point to disability and its ideas profoundly shape the disability lens of the Debrief.
I caught the wave of the expansion of higher education in Brazil. As well as a big increase in enrolments, affirmative action meant that student populations saw more diversity in terms of class and race. No wonder that the years of Bolsonaro's government, so determined to undo the social gains of the previous decades, chose public universities as a central target.
A recent feature in Pesquisa FAPESP describes how disabled people are included in this expansion of higher education. In 2016, legislation stipulated a quota for enrolment of disabled students at federal universities, and from 2014 to 2018 their participation in these institutions rose by 75%. Even in the challenges of recent years, graduate students with disabilities have tripled from 2017 to 2021. We need to keep in mind that higher numbers will come in part from more systematic identification, but these are still impressive gains.
As with other public buildings in Brazil, universities are getting much more physically accessible, with visible progress made in the last decade. Sandro Luiz de Andrade Matas, a disabled academic, compared the “numerous physical barriers” he faced as an undergraduate in 1978 with the “elevators, ramps, and tactile surfaces” of the same São Paulo university today. For him “administrative barriers are the most challenging to overcome” and what's needed now is to make curricula and lectures accessible.
Matas is one of those trying to change the systems from within. Aline de Assis Lago in Bahia describes how changes in her own life have made her try to change her workplace: “My journey of self-recognition as an autistic individual went hand in hand with my efforts to advocate for policy change within the institution.”
Access to higher education isn't just about participating in the disciplines as they are. Presence of disabled people can change the subjects themselves. When I was studying social anthropology more than a decade ago, I was one of only a handful of people interested in disability. Friends who I met then are among those who have gone on to widen that field, and establish its presence within the discipline.
To this end, Brazilian Anthropology Association's committee on accessibility and disability decided not to make another guide on disability, but rather a counter-primer to emphasise accessibility as a political fight led by disabled people. One of its authors, Anahí Guedes de Mello went on to write with others about disability as a disruptive category to crip the study of anthropology.
As well as showing what disability can add to feminist or queer perspectives, they argue about how it can add to the subject's methods. A researcher who doesn't hear, for example, can see and understand different things from researchers that do. “Bringing disability into our thought” extends the scope of academic practice and knowledge.
I can't write about universities in Brazil without sharing the pain I felt at the fire which destroyed the National Museum in 2018. Social anthropology was housed in the back, and it has been a devastating loss to the discipline and indigenous peoples. Gone are the courtyard, fountain, and rooms where I found an intellectual home.
I didn't go there expecting to research disability issues. But I gradually started picking it up and then spent some glorious months “researching” with physically disabled people. Let's be clear, my research was based on “participatory methods”: in this case that meant going to the accessible beach project, playing wheelchair rugby and having dinner or going to the theatre with people that became dear friends. My write-up of that work was the first time I felt I could connect my physical experience of the world with how I think.
In the years since I've become fiercely proud to see how friends and former teachers have, despite a lack of more active government support, managed to rebuild the programme. Their work, and this progress of Brazilian researchers and universities in bringing in disabled students and exploring disability goes towards mending some of the heartbreak I've felt watching Brazil from afar.
We care about joy and being happy
“I feel like an outsider” From Indonesia, a video feature on Ardiansyah by Disability Justice Project. Ardiansyah has schizophrenia and his brother asked him to leave home out of shame. We see the mosque where he sleeps, and hear how the community there supports him.
“We care about joy and being happy”. A beautiful animation on portraying our diverse bodies and the collective dreams through which we make them. From Urgent Action Fund. “In the search for pleasure we find millions of prejudices”.
And my favourite quotes this month:
- “It's actually more important for disabled youth to plan ahead for adulthood than it is for young people who don't have disabilities – if only to make sure you have a say in your own future.” – Andrew Pulrang with a great letter to young disabled people
- “Trying to understand the complicated feelings which arise out of our everyday encounters with the world is central to the lives of all disabled people” – the late Lois Keith (via Vera)
- “Waiting is one of the defining features of disabled life” – Esther Loukin in her Swathmore Lecture
- “Part of accessibility is patience, holding space for all the different ways we voice and listen.” – Haben Girma on Down to the Sruts
Thanks as ever to Áine Kelly-Costello for review of a draft and to Anahí for a clarification on translation.
My friends from my time at the National Museum continue to shape the way I think. In my life and the making of the Debrief I am, among others, deeply grateful for my long exchange and friendship with Adriana Vianna.
Many thanks to readers and Sightsavers for the support that keeps this going. This edition was also made with support from K Li.