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Peter Torres Fremlin

What kind of world do we live in

Guide to recent disability news from 50 countries

Dear Debriefers,

I've just gone through hundreds of links to bring you the highlights from the last month of disability news.

I'm afraid we start with awful news of a young child murdered in Tanzania. But we also find the words from within our community on how we live with and process grief.

There's updates from Gaza, the latest reports on assistive technology and global development and how Jamaica has a campaign to “ramp up di access”.

All this and more, including a (maybe) non-speaking rapper from Congo.

Explore the full guide of 160+ hand-picked links, organized by subject or by country.

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What kind of world do we live in

In Tanzania, there has been an awful murder of a two-year-old girl, Asimwe Novath. She was a child with albinism abducted from her home at the end of May. Asimwe's kidnapping led to a wide police search and her mutilated dead body was found over two weeks later.

Among the nine arrested for her murder are Asimwe's own father and a priest. It is likely that the horrific crime was based on a belief that the body parts of people with albinism have magical properties.

The albino community in Tanzania fears further attacks. National elections are coming up and some political candidates believe that witchcraft will help their chances. Muluka-Anne Miti-Drummond, UN expert on the rights of persons with albinism, reacted to Asimwe's murder by asking:

“What kind of world do we live in where people are so dehumanized that even religious leaders and parents can be incentivised to brutally kill and mutilate a toddler?!”

The Africa Albinism Network is calling for a National Action Plan on Albinism which would include measures for protection. And even before the brutal murder of Asimwe, the UN Committee on the Rights of Persons with Disabilities had called up Tanzania on its lack of action:

“We call on the State party to urgently and unambiguously condemn any attacks against people with albinism and to investigate any such attacks promptly and effectively,” said Committee member Amalia Gamio Ríos. “Failure to do so sends a message that ritual killings and mutilations are condoned.”

The hardest part of this disabled life

Many have been mourning the passing of Bhargavi Davar. International Disability Alliance remembers her trajectory as an activist. Mad in America shares stories of many people she touched with her presence and work. TCI Global and Bapu Trust Family gather memorials.

Grief and grieving is an important part of any community. We make memorials and tributes to commemorate those who've left us, and to hold together those of us that remain. It seems an especially important part of the disability community, where many are lost far too soon.

Kathleen Downes found a way to put words on the place of grief in the disability community in her piece “the hardest thing to carry”. She celebrates the miracle of sharing life with disabled friends, and mourns their loss:

“Alexis, Wilfred, Niya, Dan, Philip, Amber, Christopher, Matthew, David, and so many others whose light is now scattered everywhere… I love you.

The hardest part of this disabled life, harder than any broken wheelchair, or rude social service worker, or prying ableist question, has been losing you.

But the best part of this disabled life, without question, has been knowing you.”

Often part of our grieving is anger. It's captured in Jodi Ettenberg's moving tribute to Connie Rim, a “bright light” of the community of folk with spinal CSF leaks. As well as celebrating Connie, Jodi is angry with health professionals who didn't acknowledge her condition. Connie was “failed so many times along the way”:

“What else can I do but try and transmute my rage and my grief about Connie's death and the unfairness of it all into something that can move the needle on all of this mess?”

So much destruction

The UN Committee on the Rights of Persons with Disabilities has issued a statement on the situation of Palestinians with Disabilities, “subject to unbearable consequences of the ongoing hostilities and violence”. And the activist collective asking the disability rights community to speak out has compiled a useful collection of disability data in Gaza.

One window into the destruction comes from the experience of Haitham Saqqa, a person with disability working with Medical Aid for Palestinians (MAP). He reflects on how Gazans have been left behind and shares a concrete insight into conditions in the strip, and work to assist people:

“Between January and March, there were no wheelchairs in Gaza. No one knows how the stocked wheelchairs were distributed, and people were using any available wheelchairs to transport water. This lack of wheelchairs made many people with disabilities unable to move around, so it was hard for organisations like MAP to assess their humanitarian needs or make any available services accessible to them. Even if wheelchairs were available, the scale of Israeli military violence has caused so much destruction that the streets are almost impossible to navigate on a wheelchair.”

Meanwhile, in Israel, disability organisations object to the UN Committee's position on Palestine, claiming that Israelis with disabilities have been forgotten.

Beyond current biological limitations

Speaking of wheelchairs, the first ever World Day for Assistive technology was commemorated on 4th June. The AT Scale coalition launched a new Assistive Products Market Report which finds how market failures “prevent almost one billion people from accessing the products they need.”

It highlights huge gaps in access to essential technology. For example:

  • “Of the billions of people who need eyeglasses, just 36 percent can access them.”
  • “Hearing aids are available to just 20 percent of the hundreds of millions of people with hearing loss.”
  • “Wheelchairs are available for just 5 to 35 percent of the 80 million people who need them.”

And from the University of Cambridge there's a cute case study on getting to grips with an extra thumb.

Still left behind

Still left behind. There is an advance summary of the UN Flagship Report on Disability and Development 2024. I haven't gotten into it yet, but these flagship reports are essential compilations of the growing data on disability. This one marks how the world is not on track to meet its 2030 Agenda for Sustainable Development: “persons with disabilities are being left behind”.

Excluded from jobs. Human Rights Watch looks the “persistent failure” of Iraq to ensure employment for persons with disabilities. See also a short video.

Low progress towards disability-inclusive health. A study from Danae Rodríguez Gatta and others assesses the national health system in Chile.

Ramp up di access

Jamaica celebrated a Labour Day spirit of volunteering with a campaign called “Ramp up di access... show that you care”. The Prime Minister called it a time to lend a helping hand and “uplift our communities”. There were activities to make public spaces more inclusive for “our fellow Jamaicans with disabilities, the elderly, and the vulnerable.”

Some readers will see this framing as paternalist and based on assistance rather than rights. But as well as this it is accompanied by funding to municipalities for the activities, an increase in social benefits and construction of social housing. And perhaps most importantly, an acknowledgement that much more needs to be done.

Rapping without words

Rapping without words. MC Baba, a Congolese rapper, has gained attention through using mouth sounds aligned with backing music. Snopes explores the speculation that he can't hear or can't speak.

Online abuse. Short statured Australians are facing increased online abuse including through social media groups deliberately targeting them:

“Three times in the last few weeks, Samantha Lilly has stumbled across pictures of herself online that she didn't know had been taken. The photos had been posted alongside derogatory captions, attracting dozens of comments from people laughing along and mocking her appearance.”

Debunking fake news. Priti Salian features an initiative in Uganda that trained sign language interpreters to verify news. It has grown into a community actively debunking fake news.

Across sensory experiences. Alt text selfies is a beautiful project bringing together textual self-descriptions. Alternate text provides a description of a visual image as an access tool. These portraits go beyond that to “blend smell, taste, touch, sound and more”:  

“At their core, alt text selfies are an access practice, tools for connecting across sensory experiences and distance.”

Flying high above

Correction. In last week's edition I wrongly attributed a report on youth to UNFPA. UNFPA was one of the coalition that authored it, led by UN Youth Office.

In case you missed them, catch up with recent Debriefs:

Flying high above. Kenya Airways has hired its first cabin crew with albinism, Loise Lihanda. She comes across as bold and brilliant. I wish Asimwe Novath had lived long enough that she could have looked up to her.

I close with grief, and memory of Asimwe. We need to change the kind of world we live in.

Peter

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Recent News

This update has 166 curated links from 50 countries and regions, organized across 48 subjects.

You can explore it organized by subject or by country.

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Countries

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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