Hands once joined

Dear Debriefers,

This edition opens the Debrief postbox to find insights about international funding and memories of childhood experiences.

Those who lost their jobs due to US aid cuts reflect on the damage done, leaders of international work discuss funding flows, and readers share personal and political reactions to recent Debrief articles.

Among these are discussions on inclusion and exclusion in education. And, as part of going back to school, I get a (mild) correction from my father.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist from Indonesia.

Disability Debrief is published on a pay-what-you-can basis. Thanks to Claire and Into Inclusion for renewed support.

Forgetting of hands once joined

The dismantling of US aid programmes has continued apace since my reporting on it last month.

While one Debriefer tells me his programme for disabled people got a waiver on the basis of providing life-saving support, many more are telling me about having to close things down or losing their jobs. (And the programme that got the waiver was funded by a different US agency, not the now almost-demolished USAID.)

Cannot unsee the illegality and immorality. A now former employee of USAID shared:

“It has been awful to witness the Trump administration’s wholesale dismantling of our agency, and the needless termination of thousands of activities around the world including projects supporting the rights, dignity, and autonomy of persons with disabilities. It runs contrary to our laws, policies, and decades-long commitments, and is already causing significant harm to individuals and communities.  I have hope that the resilience and tenacity of persons with disabilities will enable people to withstand the sudden loss of supports, but I cannot unsee the illegality and immorality of all that is happening.”

Forgetting of hands once joined. Another reader who lost their job due to the dismantling of USAID said:

“USAID did not fall in a single night, but in a slow betrayal of promises, a quiet forgetting of hands once joined—donors, leaders, people of war-torn lands and displaced, and marginalized people.

Disabled leaders who fought for their future, advocates and allies who turned policy into justice, coalitions once empowered to build equitable opportunities — all left fumbling in a void that does not answer.

And in that void, America is made smaller, not by force, but by the reckless choice to turn away.

Yet in the midst of all this, we must not stand idle. Let us hope for the resurrection of USAID — but prepare for the worst by strengthening the work of others, rallying support, and refusing to let this void creep and encompass everything.”

Expanding our sense of solidarity

Question of survival. One leader from an organisation of persons with disabilities in a Central Asian country received official notice of termination of support that they received, via a foundation, from USAID:

“This is a very sad moment for us. It seems that the question of survival for organisations of people with disabilities has become even more obvious. The lack of stable funding and resources puts many of us in a position where we are forced to stop our work and advocacy.

Your platform and coverage of these issues are invaluable in raising awareness of the problems we face. I hope that this will encourage more support and solidarity with organisations like ours.”

Expanding our sense of solidarity. Andrew Pulrang, in Disability Thinking Weekday, also commented on the importance of the coverage:

“We all need to read this edition of the Disability Debrief newsletter, top to bottom. It's especially important for any of us in the U.S. who has ever been tempted to think, even for a split second, something like: ‘Why are we spending all this money on foreign aid when disabled people right here are on waiting lists for services?’

Now more than ever, when so many of the incentives are to protect our own, narrow turf, it's vitally important for us to maintain and expand our sense of solidarity with disabled people everywhere – of all backgrounds here in the U.S., and yes, absolutely abroad too. I say this because I have heard disabled people many times express this frustration – why do they get stuff and not me?”

Get through this together. Speaking of solidarity, Anne Hayes whose work at Inclusive Development Partners has come to a crashing stop, told me:

“I know we will get through this all together. I just don’t know how long it will take to get there.”

For more from Anne and her work see this in-depth interview with Time.

Back to the power plays of the late 19th century

The old arguments won't cut it anymore. Gerard Quinn, the former UN Rapporteur on disability rights, called the US aid freeze “despicable” and said it was “back to the power plays of the late 19th century”. He described what's under attack and part of the response that's needed:

“It looks both the Regulatory State (channelling economic development into socially useful ends and not destroying the planet in the process) and the Social State (in as much as there is one) are both in the crosshairs. It is as if FDR [the Franklin Delano Roosevelt Presidency and New Deal] never happened.

From within that worldview, the social and civil rights of persons with disabilities is their own look out. It looks like we need a new set of justifications for human and social rights. The old arguments – ‘hey, we have a treaty’ – won’t cut it anymore.”

UNICEF told no DEIce

As the US wrecking ball collided with the international system, several people sent me highlights (lowlights) from the UNICEF Executive Board meeting at the start of February.

US representatives used the meeting to push for diversity, equality and inclusion to be taken out of UNICEF planning. And, in a discussion (at 22:40) on UNICEF's Disability Inclusion Policy, the US representative requested the strategy be renamed. In a logic-defying intervention he said:

“The US encourages UNICEF to ensure every person enjoys equality of opportunity. The US does not and will not support any program which uses any form of diversity, equity and inclusion, or accessibility precepts, programmes, initiatives and strongly requests that UNICEF support for children with disabilities does not include any form of DEI programming”.

Keeping us in our place

Another important theme in Debrief correspondence has been the tension over funding in international disability work, with its complex relationships between funders, intermediary organisations, and those led by disabled people ourselves. Many readers confirmed the dynamics in my reporting on the unequal partnership between them.

Keeping us in our place. Kate Swaffer, co-founder of Dementia Alliance International characterises the relationship with gatekeeping organisations as:

“Keeping us in our place, and retaining all the power, owning the narrative, and the majority of the funding”.

She closes ironically:

“God forbid we have a say about our own lives, what is best for us, and why we also deserve self determination and autonomy... and that sufficient funding is actually provided for us to do that effectively - and on an equal basis with others.”

Relationship reboot. CBM Global reminded me of their efforts to reshape this relationship with disability-led organisations. David Bainbridge, their Executive Director, shared his writing on partnerships in Madagascar and Nigeria and told me:

“I love the call for a relationship reboot. One of the challenges I believe [International NGOs] need to be seriously reflecting on is what their measures of success should look like going forward? It should no longer be about flag planting, financial turnover and the like, but measures around the quality of partnerships, the sustainability of the local organisations they say they exist to support, the depth of transformational change, the co-creation of programmes and campaigns etc. This will continue to be a major push for CBM Global in 2025 and beyond.”

Fairer funding. ADD International picked up on Debrief reporting as part of their campaigning for fairer funding of organisations of persons with disabilities. And they are holding a webinar on the campaign next week, March 20th.

We live in a bureaucratic world

Bureaucratic world. Not everyone agreed that it's as simple as shifting the relationship with funders. One reader close to the international disability movement reflected that disabled-led organisations also need to up their game:

“We live in a bureaucratic world. If funding comes from those agencies with lots of regulation, like government or the UN, then OPDs [Organisations of Persons with Disabilities] need to get better at dealing with that. Otherwise I'm afraid that OPDs will be left behind. In other sectors local NGOs have better capacity and we should learn from that.”

But, with the cuts that governments are making to international aid spending, he speculates there might be a “paradigm shift” in funding and with that, different requirements:

“We might see private sector, philanthropy and churches stepping in with more money than they are now. Probably private money will come with less demands, less conditions, and ability to take more risk.

But will they fund the same projects we used to make? It might be more charity-based, or focussed on concrete assistance. I don't know if legal or public services reform will interest private funders so much.”

Achingly raw and real

Rachel Litchman's searing personal essay on facing chronic illness and poverty resonated with many. In the words of Catherine Hale:

“One of the best things I've read in a long time. Achingly raw and real.”

Or, from El Gibbs:

“This is such an essential essay from Rachel. I recognised so much of this, being trapped by illness, poverty and loneliness.”

And in solidarity from Adrienne Lauby:

“Rachel, your essay touched me deeply. As a poor disabled person, I have imagined myself getting more disabled and at the mercy of the inadequate system of supports for poor people. Mostly I imagine living in a room with two strangers in a poorly funded nursing home. [...] I respect you for the heart and spirit in which you live with pain and continual loss. Because of this essay, you are not forgotten or invisible to me. I keep you in my heart.”

I knew I wasn't any good

Another essay that brought out many reflections was Lea Labaki's piece, Struck Out, on ableism in physical education in school.

I was happy to hear about PE lessons from many of you, and Fiona Woods shared her experiences as a blind girl in sports lessons in Australia:

“This article has brought back to me so strongly how I felt during sport/PE lessons, even though they were many years ago. There were the three types of activities.

There were the ones, like netball, where it was obvious a blind girl couldn’t play and I was allowed to sit on the sidelines. At least I could be with and barrack for my friends.

Then there were the activities, like folk dancing, where it was deemed I could join in, but I knew I wasn’t any good and I didn’t know (because I hadn’t grown up yet) that there were lots of other girls in the class who also weren’t any good.

Finally, there were the worst lessons of all, where someone had thought out a game just for me, like tossing a ball with a bell in it to some other poor girl who also wasn’t good at sport and had been identified as an appropriate companion for me.

All of these versions of sport reminded me that I wasn’t like everyone else, no matter what else I could do. This lesson was hard to unlearn, as was my longstanding aversion to physical activity. I wonder what all this says about society’s adoration of elite athletes with disability!”

Allowing for difference

Writing from Tanzania, Nyuki Msimulizi wrote using a pseudonym to share their own experience as a student and teacher, and the one-sided deal of education.

Kathryn Underwood sees the same dynamics as present in Canada:

“First, the choice of a pseudonym is part of the story - and it’s why so many people can’t write about disability. I recognized the struggle and felt seen in the story she told.

Second, Nyuki asks, what are people doing elsewhere? I struggle with exactly the same questions from my place in a ‘Western’ country. Canada is held up as an example for inclusion but our ‘inclusive’ schools are not allowing for difference, and in the process, causing harm.”

Some good cases of inclusion where shared by readers in the comments on Linkedin.

Lack of flexibility

I also wrote about the double-edged nature of education for children with disabilities and quoted Malick Reinhard on how his special education was set to “mould” or “normalise” disabled children to society.

Lack of flexibility. In the UK, my friend Dami pointed out that this pressure can apply to other children who don't conform to the norms.

For example, she shared news of a mainstream school trust accused of using a “toxic culture” to impose discipline, in a way particularly affecting those with special educational needs and disabilities. Dami tells me:

“This approach is quite in fashion for inner city schools with particular demographics, the idea being that certain kids need this kind of structure/discipline to be able to fit into society. [The article about the school trust] reads like the lack of flexibility towards kids who may need something different is the biggest issue that the parents are expressing discontent with.”

Middle class. In my article I also critiqued my primary school for only expressing concerns ahead of me going there. Father Fremlin thought my account was a “little unfair” to the headmistress, but agreed that us being a middle class family “helped immensely”:

“I knew how to persuade the headmistress that I had understood both her problems and her arguments and respected her personally, and I had a close relative who had seen the question from the other side [i.e. that of the school]. The message that parents can and should try to negotiate with teacher-administrators is vitally important.”

A positive side in segregation. Meanwhile Alexander Ogheneruemu from Nigeria said that special schools for disabled kids have a positive side:

“They help these kids build defensive identities/mechanisms that are helpful in meeting much of mainstream society's ableism/discrimination. I don't think shutting them totally is it.”

Join us in the War

Last week IK Ero's article described the violence against people with albinism as war. Jane Waithera, called for others to join the fight:

“Dear Ikponwosa ‘I.K.’ Ero my sister, friend and accomplice in the W.A.R.

Thank you for honouring us with your lived experience that resonates with most of us! This piece is beautifully written and highlights Our daily realities of real life threats, inbetweenness, exclusion and being visibly invisible when it comes to policies and practice!

I call upon all actors public , private, development partners to join us in the WAR! Deliberately include persons with albinism in all their interventions as we walk towards a world where all the challenges we face become a faded memory.”

An amazing art collection

Thanks to Debriefers who joined me in remembering Tan Kuan Aw, and celebrating his memory and art. These are his pieces published on the Debrief. My friend Jo responded:

“What an amazing art collection, somehow all the more impactful seen together like that.”

The best I got

In a curated news update last year I shared a D*List ranking of airport wheelchairs, which included a “kinky chaise”.

The article left Kate “feeling a little disappointed”:

“I’ve never been provided with a sex chair at the airport. 😔 The best I got was felt up by a TSA guard in NYC.”

That's all for today. Do stay in touch and I hope you all get the airport chairs of your dreams,

Peter

Outro

Further reading. See the previous mailbag edition from last October.

For more art from Kinanty, see her Linkedin.

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Acknowledgements

Thanks to Kinanty Andini for such a cute illustration.

And many thanks to all my correspondents who discuss and challenge the work I publish.

Thanks to the readers and organisations who support the Debrief on a pay-what-you-can basis.