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Peter Torres Fremlin

Protection against the sun

Climate change, backsliding democracy and news from 55+ countries

Dear Debriefers,

I've travelled across the internet to bring you curated news on disability from nearly sixty countries.

This edition sees how disabled people are caught in climate change, political turning points and backsliding democracies. And there's painful research on the situation of disabled people in Gaza.

But there is also some positive news about how work from home has benefited disabled people and – why not? – some drama over data, with heated discussions about measuring disability.

As ever, it's an update that mixes together the experiences of disabled people with research and policy about our lives. Plus, facing up to an inclusive Halloween.

Explore the full guide to recent news: over 190+ links organised by subject or by country. This instalment picks up from where we left off in September.

The Debrief does this work with reader support.

Protection against the sun

Protection against the sun. A beautiful illustrated feature from Africa Albinism Network shares the journey of Nnene Bassey, a Nigerian human rights defender with albinism. Her story unfolds in the context of social challenges and climate change:

“One sunny day on October 1st, her peers, seven to ten years old, planned to go to the stadium to partake in the Independence Day Celebrations. This time, Nnene decided to sneak out to watch the Independence Day march without any sun-protective gear such as long-sleeved clothing and a wide-brimmed hat. The young, curious, and patriotic Nnene suffered severe sunburns that left her in agony for months. It was at this precise moment that she was confronted, as a child, with the harsh reality of living with albinism and the true reasons for her parents’ protection against the sun.”

“Unprecedented in the last century”. In South Sudan, Light for the World call to protect people with disabilities in floods that have forced hundreds of thousands to leave their homes. Meanwhile Africanews has a short video feature on disabled people in the floods.

A shrinking space for disability

The US Presidential election this Tuesday is too close to call. Key swing states could be decided by small margins, and whose vote will count is being contested. Disability rights are closely linked to this right to vote and the administration and civil society have made efforts for voting accessibility. However many disabled people are denied that right, including those under guardianships in states that prohibit their voting.

There's a lot at stake. Trump has continued using ableist language with an attack on Harris as “mentally impaired”. Among much else at stake, Project 2025, a blueprint for Trump's administration, threatens the civil liberties of disabled people.

What was the real crime of Saibaba? In India, friends and advocates see injustice in the passing of G.N. Saibaba. Saibaba had a disability resulting from polio in childhood and was an outspoken professor. He spent more than eight years in jail based on political charges that were later thrown out by the courts. For Apoorvanand:

“What was the real crime of Saibaba? He constantly raised his voice for the human rights of the weak, the oppressed and the wronged by the system. Is this not a crime in the India we live in today? Is it not a crime to believe that the freedom of some people is not real freedom? That everyone should have it? That was the crime Saibaba was guilty of, and he paid for it.”

Disability in backsliding democracies. The challenges of disability advocacy organisations in eroding democracies are examined by Gabor Petri and Erika Hruskó. Looking at the past 25 years in Hungary, they see “the space for disability rights advocacy has been shrinking for the Hungarian disability movement”:

“Opportunities to influence and monitor public policy-making have been diminishing. Disability advocacy organisations have been less included in consultations and decisions about policies affecting disabled people. Due to fear of repercussions, disability movement actors often employ self-censorship when talking publicly. The meaning of human rights and civil society have changed in the public discourse. Legal obligations to consult with the disability movement, existing human rights laws, and statutory human rights bodies seem less and less effective amid eroding democratic structures. The disability movement has become fractured.”

A tragedy within a tragedy

“They took everything that helped me to live.” Amidst Israeli devastation of the Gaza strip, a Human Rights Watch report looks at children with disabilities. It features the words of Ghazal, a 14-year-old girl with cerebral palsy in Gaza:

“From the day the war broke out, they destroyed what was inside us. They demolished my house and my room, which held all my memories. They took everything that helped me to live, like my devices, my boot, and my wheelchair. How can I go back to how I was without all this?”

Reporting on the experiences of Gazans with disabilities also comes from +972.

UN experts issued a statement to call the situation of persons with disabilities trapped in Gaza a “tragedy within a tragedy”:

“Israel’s genocidal campaign has left persons with disabilities completely unprotected. Persons with disabilities are being killed and injured by indiscriminate attacks despite posing no security threat, epitomising the deliberate assault on civilians by Israel.”

Meanwhile, following the Israeli attack on Lebanon, humanitarian response measures from the International Labour Organisation estimate that “at least 30,000 persons with disabilities have been affected by the crisis so far and are in need of urgent support.”

Working from home

Working from home. In the US, the National Bureau of Economic Research (NBER) has assessed the “dramatic rise in disability employment” since the pandemic. They find that most of it can be explained by an increase in opportunities to work from home:

“A back of the envelope calculation reveals that the post pandemic increase in working from home explains 80% of the rise in full-time employment. Wage data suggests that [work from home] increased the supply of workers with a disability, likely by reducing commuting costs and enabling better control of working conditions.”

A positive trend in workplace adaptations. Meanwhile in Canada, a study shows that adjustments are more likely to be granted at work in 2022 than they were in 2017. Among these are twice as many people with disabilities granted the accommodation of working from home.

No news is good news. European Disability Forum look at the data to see the impact of the cost-of-living crisis on persons with disabilities. Disabled people are still 10 percentage points more likely to be at risk of poverty than non-disabled people, but, “surprisingly”:

“The average rate of persons with disabilities in the EU at risk of poverty and social exclusion has not risen, despite the socio-economic challenges Europe is facing.”

Millions of people are missing

Discussions continue over how to measure disability in the US Census. Bonnielin Swenor, Scott Landes, and Jean Hall argue that many disabled people are being missed. They push back on what are known as the Washington Group (WG) questions, which are based on a person's functional limitations:

“The first step in moving disability measurement forward is recognizing that defining disability solely by someone’s functioning is inadequate. While measures of functioning are important to understand the limitations certain disabled people experience and could identify disabled people who may benefit from specific programs or benefits, these surveys still fail to capture many disabled people. Using this data to determine national estimates of disability is akin to using data on languages used in the home to determine the national race and ethnicity estimates.”

Meanwhile a response from Daniel Mont and other statisticians defends the the Washington Group questions that they helped to create, and which are now the international standard. They argue that measurement be aligned to purpose:

“Focusing on functional difficulties in core domains makes it possible to produce an overall indicator but also provides information that is specific enough to be directly useful in removing key barriers that contribute to domain-specific difficulties. For example, people who cannot see face very different barriers than people who cannot hear; they require different accommodations or design elements.”

For more about measurement and the Washington Group questions, see previously: how many disabled people are there?

Good laws not translating into better life

Committing to commitment. The G7 countries adopted the Solfagnano Charter reaffirming commitments on disability rights:

“We strongly reaffirm our commitment to show leadership and ambition, in line with the UNCRPD, and to collaborate, [etc, etc]”

Good laws. Meanwhile, writing from Kenya, Elizabeth Ombati reflects on the African Disability Protocol (ADP) coming into force. She says that “good laws have not translated into better life for persons with disabilities”:

“Examples are rife across the continent. Inaccessible buildings; inaccessible public transport, children with disabilities missing out on quality inclusive education, women and girls with disabilities facing violence in their communities; less opportunities to work and employment in the open labour market; inaccessible voting processes; less involvement in public and political spaces are among many other ways that people with disabilities have been pushed to the margins in their own communities. This is inspite of laws that are said to be progressive and inclusive.” 

The pleasure principle

The pleasure principle. US disability icon Alice Wong wrote a messy, sexy and intimate essay on disability, pleasure and ageing and the “bony, bent, weakened bits” of her body:

“Because of, not in spite of, the current status of my health, I still lust for pleasure. Hands stroking my thighs, fingers running through my hair, an arm wrapped around my waist. I want to touch, taste, feel everything. My twisted body writhing from delight rather than pain.”

Baggage claim: The U.S. Department of Transportation has fined American Airlines a record $50 million. The airline allegedly mishandled or damaged 1000s of wheelchairs, in addition to cases of “unsafe physical assistance” to passengers.

Compensation for access workers. In the US, Madison Zalopany and Alison Kopit surveyed those working on accessibility in cultural institutions about their pay:

“Accessibility as a field is growing, however, compensation for access workers often remains stagnant or is framed as a volunteer opportunity. This benefits the inaccessible institutions and hinders progress on making long-term changes.”

The big picture. An illustrated comic exploring the social model of disability, by Hatiye Garip.

“Fear no face.” Face Equality International are campaigning for a more inclusive Halloween:

“Masks, prosthetics and makeup looks featuring scars, burns and other real-life conditions are marketed as ‘scary’, ‘spooky’, or ‘monster-like’ and this dehumanises the facial difference community.”

Behind the Headlines

Correction: in last week's newsletter I made a mistake in the name of the Disability Advocacy Network Australia (DANA).

Behind the headlines. For more from Debriefers, see:

  • Behind the headlines. I spoke with Inklusion Leben about how and why I do the Debrief.
  • The pain of the policy that splits disabled kids from their parents. Áine Kelly-Costello spoke with a mother in New Zealand whose disabled son isn't allowed to join her.

In case you missed it. Debriefs in the last month:

And for much more from other sources, explore the curated directory of news below.

Cheers,

Peter

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Recent News

This update has 194 curated links from 58 countries and regions, organized across 51 subjects.

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Acknowledgements

Many thanks to the readers and organisations whose support makes this work possible, and to everyone who shares links, news and reports with me.

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