A thousand welcomes
Dear Debriefers,
This edition opens the Debrief mailbag to find dispatches from protests in Kenya, ways to access God, and leaders from our community that have passed away.
We get a bit technical too, as Debriefers tell me how they're working on promoting inclusive employment and someone asks how to ensure fair representation of disabled people in international cooperation initiatives.
To start us off, I celebrate a milestone of reaching 3,000 readers and anticipate tomorrow's British elections.
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Reader support makes the Debrief possible. Thanks to Emile and Evelin for new contributions.
A thousand welcomes
This is the first Debrief going out to over 3,000 of you. Welcome to those who have just joined, and many thanks to everyone who's come along for the journey. As I said at 2,000, it's deeply meaningful for me to have your attention and support for this work to continue.
If you're new here, this is written by me, Peter, from my base in the UK. I count on collaborations with writers and illustrators all over the world to put a disability lens on world news, grounding it in lived experience. These are stories you won't read elsewhere, and we're able to do this work and publish it without a paywall thanks to support on a pay-as-you-can basis from individuals and organisations.
To explore further, you can see the most popular articles so far: on the crisis at the International Disability Alliance, on the meeting between disability and climate, and an exploration of the number of disabled people worldwide. Or you can browse the Debrief's library, a unique resource curating disability news from over 150 countries.
And it's a project made in community with y'all. Reader insights, feedback and references are an essential part of widening our view.
And the joy of goodbyes
Speaking of my base in the UK, the news here this week is our national election tomorrow. After fourteen years of right-wing Conservative party rule it looks like we're expecting a thumping win for Labour.
I, and many other Debriefers, will be very relieved to see them go. The Conservatives' austerity policies hit disabled people hard as our benefits and supports taken away. It's a government that's been chaotic and cruel, and has often scapegoated disabled people.
As for what comes next, it doesn't inspire. The DPO Forum's scorecard of where the political parties stand on disability shows Labour only meeting the aspirations of the disabled people's manifesto in one of ten policy areas, employment.
But the hope from friends working on disability policy is that the new government will be more open to collaborating with civil society. Even if it hasn't been promised, there's a chance for change. Our country needs it.
Personal to everyone
Speaking of people unhappy with their governments, there have been intense demonstrations in Kenya about the government's proposed tax increases. I asked Lizzie Kiama of This Ability Trust how disabled people were or weren't involved.
Lizzie told me that it's been “incredible to witness how accessible, diverse and inclusive this movement has become”. The demonstrations have made an effort to involve people in “a come as you are” approach that speaks to the cross-cutting impact of the proposals:
“Everyone has felt the impact of the various tax increases that this administration keeps imposing on the people. No one needed representation by an organization as this was personal to everyone, persons with disabilities included.
Additionally, the sense of belonging and ownership was shared from the onset. There were plans for everyone’s involvement, if actually going to the physical demonstrations. There was different categories of risk assessments and depending on one’s personal capacity, they could engage in what was safe for them - I saw people with disabilities in the epicenter of the activities. I saw people with disabilities on the outskirts of the protests. I also saw people with disabilities protected and supported by non disabled people during the protests.
There was also a strategy for those not able to join the protests to participate virtually. To keep the #RejectFinanceBill2024 hashtag alive, to keep it trending, which kept the conversation going and escalated it and gained global attention. Many of the people with disabilities that I follow on X, myself included participated virtually, tweeting and retweeting, spotlighting the human rights violations that were occurring. I felt useful and part of the community, I very much wanted to be in the streets but this was not a practical option for me, and many other disabled people.”
Hoping they take action
Last week I shared the awful news of how a child with albinism was murdered in Tanzania. I've been in touch with Helen Mushi, of Tambua Utu Foundation, an organisation founded in 2020 in part as a result of other killing of people with albinism at the time, also related to a national election.
Helen shared with me a harrowing documentary exploring this issue, Humans Hunting Humans, also from 2020. Even before Asimwe's death, Helen and other advocates had been worried that the violence of four years ago would happen again. And since then Helen tells me she was among fifteen non-profit leaders who spoke to parliament last week asking for proper law enforcement and transparency on this case:
“We were given a chance to share our thoughts on how best the government can tackle this problem. We are hoping that they will take action.”
Access to God
Many readers picked up on Alexander Ogheneruemu's reporting on Schisms in the Church, and the disconnect felt by deaf worshippers in Nigeria.
As Shirin Kiani neatly summarised, “Religion is a huge source of community for many and can be a big source of inclusion or exclusion.” Shirin shared examples from Asian countries including that of wheelchairs permitted to enter mosques in Indonesia.
Other readers also shared related research. Rachel Kolb pointed to a paper on American Sign Language interpreting in American evangelical churches: “Vessel of God/Access to God”. Its author Michele Friedner explores the need to look at skills for interpreters beyond those required in a secular understanding of access.
Tom Shakespeare shared a paper on religion, spirituality and disability in Kenya, Uganda and Zambia: “Oh God! Why Did You Let Me Have This Disability?” Written by Anthony Buyinza Mugeere and co-authors (including Tom), the article shows the importance that religion can have in dealing with the disability-related challenges in life. Based on qualitative interviews, it finds:
“Persons living with disability attach a lot of importance to having faith or believing in a supreme being which gives them the strength to keep going and make sense of the events in their lives especially when they are swimming against the tide of challenges. The paper concludes that most of these individuals attribute their success not to their power, might or wisdom but to the grace of God who does not need human might or skill of fitness to accomplish His work.”
Dedicated to transforming the world
Zhang Wanhong, a professor of law in Wuhan, China, died aged 49 at the end of June. As well as his extensive research on human rights, many personal stories share the empathy and connection he made. A memorial page has gathered an extensive range of tributes. Luanjiao Aggie Hu remembers his impact:
“He's a pioneer in disability rights in China. I recently nominated him for the 2024 D-30 Disability Impact List. He did so many things to push for disability rights in China. He himself had a mild physical disability. He was a mentor to many, including myself. He passed away at 49 years old. It's a huge loss to disability rights in China and East Asia.”
Elena Chavez, founder of Alamo Perú, passed away aged 85 two days ago. Alamo Perú was an organisation run for and by users of psychiatry. Alberto Vásquez Encalada's moving tribute to Elena celebrates the different sides of her combative advocacy and generosity in friendship:
“Yours was a whole life dedicated to transforming the world.” (Translation from Spanish)
Encouraging structured accountability
Many readers were relieved with recognition at the piece on disability over-confidence, where corporate commitments to inclusion weren't backed up by better conditions for disabled employees.
I shared research on the UK government's disability confident scheme. One of the authors, Kim Hoque, got in touch to share more findings. To understand why disability confident employers weren't hiring more disabled people, they looked at their hiring and retention practices.
Through clever use of different data-sets they get an insight into why things aren't working. Employers aren't even following the basic requirements of the scheme. Analysis of a large database of job opportunities shows that:
“Fewer than 5% of jobs advertised by Disability Confident organisations mention the offer of a guaranteed interview for qualified disabled applicants, and fewer than 10% mention reasonable adjustments for disabled applicants and employees.”
Other readers got in touch to share initiatives that are working with employers in different ways. Meg O'Connell from Global Disability Inclusion shared their 2021 State of Disability report on employee engagement. It found only 4% of employers even had a disability inclusion focus.
My former colleague Jürgen Menze reminded me of the self-assessment tool for corporates offered by the ILO's Global Business and Disability Network. It's not a campaign or certification. As Jürgen explains, the tool:
“It encourages structured accountability for delivering the necessary business improvements. For instance, having a named senior leader responsible for improving the built environment or the accessibility of ICT or the customer experience, has greater impact than reliance on written policies.”
Fair representation
One of the mantras of disability work is “nothing about us without us”. We insist that governments and other organisations take our views into account when making decisions that affect us.
One colleague working in international cooperation was wondering how to do this. They want to reach a broad range of disabled people, including those that don't have direct representation in an Organisation of Persons with Disabilities (OPDs):
“I wonder whether you have ever come across a percentage of how many people with disabilities are represented by OPDs? Has there been any research on this topic? If not, what would be your guess?”
They go on to share their own view:
“We are still struggling with the question of how to achieve a fair representation of persons with disabilities. My standpoint is we have look beyond OPDs. For instance, how can we assure that activists like you can get a voice as well? What would be your advice in reaching out to the majority of people with disabilities that is not organised in any OPD?”
Taking these questions from the top. There's a 2023 paper from Lena Morgon Banks et al that looked at how representative are organisations of persons with disabilities in nine low- and middle-income countries. It finds that only about a third of persons with disabilities were aware of OPDs and that:
“15% of people with disabilities were members across settings, ranging from 3.5% in Zambia to 14% in Vietnam (Cam Le district).”
I'm sceptical. The questions used did not make clear what was meant by an OPD as a representative organisation. As the authors themselves say, “some respondents may have misinterpreted the questions’ meaning to include any organisation focused on disability”.
My own assumption is that's it's a much lower percentage of disabled people who are members of OPDs. And I share the belief that we need to look beyond established institutions.
But this doesn't mean there's a contradiction between reaching OPDs and reaching the majority of disabled people. As I've said before, I wish international cooperation invested more in mobilising disabled people. If OPDs and their funders wanted to, OPDs themselves would be ideally placed to reach more people with disabilities.
And as for how an international organisation can better reach the majority of disabled people? I won't pretend to try to give a complete answer. It's a subject that needs time and resources to ensure more than just tokenistic participatoin.
But I can comment on the issue of “activists like me”. Personally, I don't see myself as an activist. I don't try to lobby disinterested governments, I write to people who want to hear from me. I do see myself as a journalist and one of a wide group of disabled people making digital media about disability issues.
And organisations are missing a trick in not involving us more. Communications is an essential part of reaching people. Digital creators are the new generation finding ways to build and engage audiences on disability. Invite us, include us in your work. And you know what? Give us money so we can keep doing it.
Anyway, one of the reasons I shared the question here is that many Debriefers will have strong opinions on it. I'd love to hear them.
For those of you who love homework, there's plenty of reading on the subject of participation. The International Disability Alliance wrote about “Not just ticking the disability box.” The UN has guidelines on consulting persons with disabilities. And the UN Committee on the Rights of Persons with Disabilities gave advice to governments on participation of persons with disabilities.
And with your homework set, that's all for this week. All best and do stay in touch,
Peter
Acknowledgements
Thanks, of course, to all my correspondents. And, of course, to the individuals and organizations whose support makes the Debrief possible.