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Peter Torres Fremlin

Heroes and victims

Mailbag edition on changing culture, belonging, love and much more

Hello Debriefers,

The best thing about this newsletter is its readers.

This edition opens the Debrief mailbag to hear from advocates, adventurers and authors. With reactions and research, we discuss culture, care and belonging.

As ever, it's a world tour, with Indian activists, UK disability assessments, and Paralympics for pirates.

To get started, some podcasts:

Disability Debrief is supported on a pay-as-you can basis. Thanks Melissa for a new contribution. This edition also has support from Sightsavers.

Heroes and victims

Christian Tasso's photographs and interview on representation of disabled people was appreciated by many of you, including Daddy Fremlin who says it's one of the best newsletters I've done...

From India, Shrutilata Singh shared how she often disagrees ‘with the concept of “majority and minority”’. Advocating for the rights of people with deafblindness, she sees that importance of everyday, ordinary lives:

“If we think of ourself as ordinary individuals and have support of community around us to bring out the best in us, then only we are equal. People are individuals/human first then only comes disability, region, religion, caste or colour.”

One of the things Christian said in the interview is that he tried to avoid stereotypes of “inspirational” disabled people, or portraying his subjects as victims or superheroes. A different view came from Ogheneruemu Alexander in Nigeria, who appreciated the interview but warned:

“Removing heroes and victims is to remove the essence of stories. Heroes' stories are particularly relevant from the African standpoint. We have so many odds to contend against here, from all kinds of stereotypes to prejudices, from lack of accessibilities to dearth of facilities.”

And indeed, speaking of heroes' stories, Alex picked up on the news I shared about people with disabilities climbing Mount Everest. Awfully, one of the climbers, Malaysian Muhammed Hawari Bin Hasim got to the top, but went missing on the way down. Alex wrote about Hasim's passing and taking inspiration from stories at the top of Everest.

“I hid, terrified, so they wouldn't laugh at me”

Last time I wrote about the complications of banning “comic” dwarf bullfighting in Spain. My Twitter bro Cesar shared that the government person in charge of disability rights, Jesús Martín Blanco was a dwarf himself, and that made the ban a priority for him. In a 2021 interview Blanco said the government was “absolutely rejecting this culture that ridicules human beings for their disabilities”:

“I know what I'm talking about because when these shows came to the next town I hid, terrified, so they wouldn't laugh at me. We're not going to allow more girls and boys to feel ashamed of their bodies. Spain does not have clowns, it has people.” (Translation from Spanish)

Meanwhile, my Whatsapp bro Alberto let me know about a strikingly similar case from neighbouring France. Back in the 1990s, a town in France banned “dwarf tossing” events where little people were thrown in the air. A series of legal cases followed, and one performer, Manuel Wackenheim, took it to a UN rights committee.

Wackenheim claimed that the events did not violate human dignity, and it was discriminatory to ban them. For him, human dignity consisted of having a job, which he longer had given the events had stopped. His counsel asked if the courts are to rule on citizens' happiness? The UN committee found that, yes, in this case the courts could, and upheld France's right to make such a ban to protect human dignity.

Care, community and belonging

After Anna Maria wrote about the overlooked power of disabled care, researcher Virpi Mesiäislehto found it resonated with her own research in Tanzania.

Virpi pointed out that with a lack of formal support systems, informal care fills these gaps for disabled people world-wide. Further, these aspects have “been overlooked by the international development sector, and are largely invisible in development policy and practice”.

Virpi's research with teenage girls with disabilities focusses on sexual and reproductive health and rights and shows how important care and community are:

“Negative sexual and reproductive health outcomes, such as unintended pregnancies and sexually transmitted infections, compromise belonging to the informal social networks that are crucial for their well-being. Moreover, belonging emerged as a key theme to understanding how the collective dynamics and informal networks of care fill in the gaps in formal sexual and reproductive health service provision and protection against violence.”

Part of what Virpi found is that a human rights model based on individualism “does not adequately portray the perspectives of Tanzanian girls with disabilities when it comes to sexual and reproductive health”. A participatory research methodology developed the model of “belonging”:

“The belonging-based approach focuses on human engagement as the source of well-being, and it entails, in a similar vein to Anna Maria’s featured piece, persons with and without disabilities contributing to and benefitting from the communal and familial webs of care.”

Access and Love

Congratulations to Qudsiya Naqui who, as well as making the podcast we did, recently got married. In Only Smart Things she shared the barriers she faced as a disabled bride:

“From inaccessible bridal shopping websites with no image descriptions of gowns and other clothing to vendors who were not interested in describing makeup or hair styles, or modifying their practices to ensure that I, as a blind person, felt included and affirmed. Not to mention the inordinate amount of time that my partner and I spent advocating for access and finding alternative strategies to share the load of wedding planning.”

Despite these challenges, Qudsiya still found “access and love” and worked to make her wedding photos as accessible as possible, in visual, audio and written forms. As she concludes:

“When we create access, we express love. We also give everyone the power to make choices for themselves—to create joy every day in the way that they wish.”

Ideas to understand vs ideas to act

In a recent discussion on global mental health and mad justice, I wrote about how there's a global spread of medical models of mental health as well as self-help or activist groups using rights and other frameworks to push back on them.

Akriti Mehta shed some light on how some of these ideas spread, and how they're used. She researches with English-speaking psychosocial disability activists in India. These activists make use of a range of concepts from the global North:

“Many refer to Black and Indigenous feminist activism; Disability Justice comes up a lot, as does crip-of-colour. They speak clearly of different arenas where different frameworks are useful – what is useful in understanding structural violence, mental health, and disability may not be the best strategic approach in addressing those issues.

“For example, while Disability Justice offers great principles for how we organise and who we centre, one cannot take a radical and anti-State framework to the State which remains the main source of change. Human rights framings have limits, but we still want human rights!”

For-profit disability assessments

I recently applied to get on a disability benefit in the UK – Personal Independence Payment. After living abroad, I've had to wait two years after coming back to be able to apply. I'm just at the start of the process and it's already impersonal and massively delayed.

Richard Machin wrote to share research on the commodification of social security medical assessments, which is what will be in store for me if they want to verify my disability story. Coming from a welfare rights view, Richard wanted to “shine a light on what is often poor practice in this area”:

“For many years private companies have delivered the medicals. Their staff are medically trained but often have no particular experience of a claimants medical condition. The medicals are often short (no more than 45 minutes, often less than 30 minutes). Physical examinations are often routine and superficial, and can be entirely inappropriate for people with mental health problems.

“We think that the current system is flawed and should be replaced with a person-centred process which places a much greater emphasis on evidence from professionals who know a claimant well. And while we are stuck with the current system we felt it was important to set out some best practice guidelines to help navigate the assessment process.”

Adventurers by wheelchair

I was talking travel with Paul, a French wheelchair-user living in Cambodia. Paul shares his travels in cities and jungles on his instagram thewheelchairtrip, and told me about other wheelchair-users documenting (in-)accessible adventures:

My friend Eleanor shared another adventurer profiled in this feature on a wheelchair-accessible tiny home in the back of a van. This is Dave Calver's “around-the-world adventure rig/mobile classroom”.

Note: all of these links are very visual and I don't think they have image descriptions.

Think about a different world

Paralympics for pirates: Responding to the discussion of the Paralympics' claims of inclusiveness, author Jann Weeratunga pointed out that the Paralympics can be a starting point to learn about disability. Jann herself has taken them as launch-pad to write children's books on the “Piralympics”, Paralympics for pirates. As well as normalising disability, she's writing because she “wants kids to think about a different world”.

“You block us, we block you.” The same disability activist that told me about dubious protests in France shared some refreshing ones from feminist collective Les Dévalideuses. Both sets of protests targeted public transportation ahead of the upcoming Olympics, with Les Dévalideuses blocking the inaccessible Invalides metro station. As well as a more confrontational public protest, Les Dévalideuses are a fundamentally disability-led organisation dedicated to anti-ableism. Their manifesto says they are humble, fatigued, and mordant, “biting”.

People's negative assumptions. Jodi Ettenberg, friend of the Debrief and author of the excellent Curious about Everything, picked up on Andrew Leland's essays on Borges and becoming blind. Jodi shared this piece from Jeffry Ricker on how blindness transformed his social world. Ricker writes:

“Especially disruptive were the sudden and striking changes in my interactions with others. Strangers often seemed anxious around me. Even people I had known for years sometimes avoided me. Other blind people told me of family members who were embarrassed by their blindness.”

Labelling and Labouring. Historian and friend Lucy Delap shared with me her research (and podcast discussion of it). Lucy has found a history that defies our assumptions of exclusion and segregation, showing how in Britain in the first half of the twentieth century, people with intellectual disabilities were involved in a range of work, in the formal and informal sectors:

“Intellectually disabled people adopted precarious strategies of ‘getting by’ and while they commonly experienced low wages, could also sustain degrees of community inclusion at the margins of the economy.”

Remembering a leader in Zimbabwe. Liz Ombati shared with me the sad news of Henry Masaya's passing, acting Director of National Association of Societies for the Handicapped (NASCOH). He is remembered by the Deaf Zimbabwe Trust as having a “profound impact on the future and direction of disability rights and advocacy”.

Disability Social History Project. In the US I came across the disability social history project. Patricia Chadwick told me about how it dates from 1995 and how as part of a larger collective effort, thre's a new Disability History and Culture newsletter, “to introduce both disabled and nondisabled communities to how deeply disability is integrated into all aspects of American history”.

“Stupendous”, “astounding”, “incredible”. Some of the kind words you had for the update to the Debrief library. Thank you!

Stay in touch – tell me what's going on and what's going wrong. We learn together.

Peter

Please forward this to a friend, people find the Debrief through word-of-mouth. On socials we're on Linkedin, twitter at @DisDebrief and I'm @desibility. And hit reply to say hello!

Acknowledgements

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.

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