Since launching the new Debrief website in August it's had visitors from almost 100 different countries. Today we open up the Debrief mailbag to hear from folk around the world.
We hear from Iran and a disability perspective on the mass protests there. Reader reflections take us deeper into what's needed to work on inclusive healthcare, whether inclusion gets limited to “easy wins” and how social benefits can be corrupted.
Readers give the perspective and analysis that helps us understand these issues more clearly and work on them more effectively. And readers are busy outside of writing me too, so it's great to be able to share some books that have come out and other highlights.
Fighting for human dignity
Whenever there are mass protests I wonder how disabled people fit into them and how disability is related to the issues that are being asked for. Since September protests in Iran have been demanding more rights for women and rejecting the violence of the current government.
A friend of the Debrief lives near Tehran (she'll stay anonymous for safety). She told me how much she would like to join people in the street to peacefully protest and join people “fighting for human dignity”:
“As a woman with disability, my voice should be among the loudest to chant ‘Woman, Life, Freedom’ . In this society my splendid femininity has been overshadowed by my disability. My independent living has been affected by lack of accessible infrastructures, and I do not have freedom to choose my religion.”
But in protests where conservative estimates say over 200 people have died as a result of government violence, the streets are not safe. Sadly social media reports from Disability Campaign and others include a teenager with down syndrome shot by security forces in the city of Yazd shot by security forces (graphic image of him in hospital afterwards). It's unclear whether he was protesting or just there by bad luck. Protestors themselves “must be good fighters for self defence, or at least must be good runners”:
“The streets are missing the voice of many people with disabilities. Instead, as internet filtering allows, they are active in social media. If not, they find another way to protest, even by playing a protest song. In fact, more restriction brings more creativity.”
As protests touch so many aspects of the country, she is concerned with people acquiring disabilities because of the violence of security forces, whether on the streets or torture in detention centres. She is thinking about people with disabilities confined to institutions and how they will hear the “scream of violence” from outside. Internet shutdowns also cut disabled people off from needed connections. But, “in spite of hard moments”:
“The efforts are promising. The specificity of this revolution is that it belongs to the all Iranians, from all different groups and classes. No one is marginalized. All are equally at the center. This is the voice of the unity of a nation: Woman, Life, Freedom!”
The ingredients for inclusive healthcare
Responding to my hospital adventures, a lot of you were impressed that I found a surgeon that listened to me. One reader in Australia says that her surgeon “has only even been interested in how good his stitching was”. Another reader in Canada wrote that she has an upcoming surgery but her surgeon doesn't recognise her needs, even after another specialist advocated for her.
Several readers reflected on how we try to make healthcare more inclusive. From Ethiopia, Sisay Mammo expressed concern that healthcare in rich countries hadn't managed this and asked what was the root cause:
“Resources? High ratio of doctors-patients? Personal attitude to inclusion? It seems this requires further discussion. I assumed that personal attitude could be the root cause? If so, this encourages me that we need to change the mentality of public hospital practitioners, and if we succeed in doing this, could we perhaps nurture more inclusive support in public hospitals even in developing world.”
Recent research in the US showed some shocking ways doctors had treated – or avoided treating – patients with disabilities. That research points to the many things that need to change, including accessibility, equipment, time available for appointments, and the need for further data. The lead researcher concludes that “I know for sure that we have to change the culture of medicine”.
So, yes, in the public health system here a shortage of over 100,000 staff impacts services but it isn't just that. Readers reflected on “production-line medicine” or how the one-size-fits-all policy doesn't serve outliers, whether that's disability, race, gender, or other reasons.
I can't speak to what will shift that wider culture. The mechanisms we often use in inclusion, like training people on attitudes, or adding more procedures might well work. But they might not: these bureaucracies have a prodigious ability to ignore or even distort measures into something checkbox or even harmful. My surgeon said he didn't have support on neuromuscular conditions; it turns out the support is there, but perhaps all-too-typically, not all the dots get connected.
I can speak to what I need. This time around I got it: too often we know it by its absence. I had a doctor that listened, that worked with me, that paid attention not just to the main procedure but also the wider care pathway and how it fit into my life. The other staff on the ward, especially the therapy team, were open to take his lead and also listen to me, and the care advisor that knew me well and could advise on neuromuscular conditions.
If we knew what training or magic potion would get professionals to listen and react constructively then our work on inclusion would be 90% complete.
Easy wins or easy criticism
The discussion of inclusive healthcare shows how complex and interconnected working on inclusion is. In the face of needing real structural changes, the pragmatist in me does search for solutions that can set us on the path. Last time I wrote about criticism of these “easy-wins”. It's an issue that I'm conflicted on, and readers have articulated well both sides.
A thoughtful response from Disability Media Wire explores whether they're “easy wins or first steps”. Efforts for inclusion can become “inadvertent triage” as limited ambitions give modest help to those slightly behind, leaving others even further marginalized:
“Peeling off parts of the challenge...
..and parts of the community
..do those who get help early
..remember and support
..those who are still waiting
But, on the other side, came the argument that first steps, or “easy wins” are an essential part of how change happens. My cousin Richard told me that in his work (not inclusion related) that easy-wins are a good way to raise enthusiasm or at least get acceptance for an approach. Their success can motivate decision-makers and secure further resources to expand their scope. From the project in question, Simon Brown told me that results include a number of multi-national companies in the programme now looking to scale the work across their Africa footprints.
I think employment offers particular challenges for this discussion. Current employment conditions are for so many people around the world are pretty unsatisfactory. I recognise that inclusion can come with a cost, and as the critiques highlight, can further lock-in our harmful ideas about productivity. I welcome the overthrow of capitalist conditions of employment, and the way a disability view contributes to that, but in the meantime people are looking for work in the labour markets as they exist, not as they should be.
The discussion about inclusion in employment and beyond needs to be more careful in how we advocate and how we critique. Getting multi-national companies to work on disability in African countries is nothing we would have called “easy” a few years ago. It would be better called “partial inclusion”.
We need to make sure we are taking the first steps in inclusion, not the last. It's only afterwards that we can tell which they were. We are working for a revolution, but we shouldn't put demand that every single action changes structures in a radical way. And, as we work, we should check if we're going in the right direction, and remember and support those who are still waiting.
Speaking of how efforts for inclusion can end up backfiring, earlier in the year I explored corruption in schemes for classifying disability. I felt bad because the case study was rich but it was from Ukraine, and it's unfair to pick on them when so many countries have the same problems.
Readers were able to share that context. From neighbouring Georgia, Esma Gumberidze wrote to recognise the same issues. And that the classification system can be a tool to exploit disabled people:
“The disability determination system can also be used to force people to vote for the ruling party. For instance by making people undergo the recheck of disability every now and then and by imposing the threat of benefit withdrawal it is possible to force people to go and vote.”
For more on how Soviet-era systems for classifying disability are causing problems, see also a recent paper on employment for disabled people in Uzbekistan. But similar challenges exist in other systems too, and Disability Media Wire pointed out that in the United States, privilege can have some of the same function. Whether it's a bribe or paying for a lawyer, “someone gets paid”:
“If you are wealthy enough and educated enough you can afford to fight the disability services systems to get what you need (or for those who you care for). Otherwise, you are largely at the "mercy" of the system.”
As for the case in Ukraine, commenter Ievgen supplied further analysis. He sees disability benefits as particularly vulnerable to corruption because of the ability of officials to use their (in)discretion in decision-making in lengthy legislation with “dozens of loopholes”. Among social benefits, “disability benefits are the most murky among them all which is surreal, considering how vulnerable and poor those people are”. As for the reason to pick on Ukraine, part of this is for a good reason: Ievgen agrees that “in terms of anti-corruption journalism efforts we are far ahead of a lot of developed countries”.
This reporting took us further into the rabbit-hole of further areas where corruption can occur. These include provision of rehabilitation and assistive devices: according to a study a “very tempting market” with little monitoring, guaranteed payments and where procurement rules don't apply. Further areas include homes for children with disabilities “there will be children - there will be money”. Sadly that can descend into abuse as well as embezzlement. See previously on the Debrief for how the institutions are affected by the war.
For more, see a recent literature review on how corruption affects the rights of persons with disabilities: disabled people are exposed to corruption and the social discrimination we face leaves us exposed to more. Another point this discussion raised was how disability assessments should be implemented, and Dan Mont kindly pointed me towards this paper summarising the latest efforts for reform in disability inclusion and social protection.
Our stories and our futures
Strangers to ourselves. Many of you will remember the wonderful Bhargavi Davar from the interview we did on a rights' and Buddhism-inspired view on community and mental health. A recent book Strangers to Ourselves by Rachel Aviv features Bhargavi's mother as one of the cases that are pillars of the book, which explores “how the stories we tell about mental disorders shape their course in our lives.” The book shows a range of perspectives, many very different from Bhargavi's own, and is based on extensive research. Bhargavi celebrates the research and book's style, but has mixed reactions to its contents.
The Future is Disabled. That's the title of a new book by Leah Lakshmi Piepzna-Samarasinha. Leah writes me to say that the book is a “love- and real-talk letter to other disabled folks” that centers disabled queer and trans, Black, Indigenous and POC folks:
“It's a book I wrote in the last two years of Trump and the first years of the pandemic, from lockdown and a lot of disabled grief, about the ways I witnessed disabled people and disability justice movement organizing in the face of eugenics, fascism and climate change for our collective survival and joy.”
“It's a reflection on where we are as a movement, on small disabled moments of life, a recipe book and a spell book. I have been feeling pretty low on hope these days, and I wrote this to remind myself, and each other, that, in the world of Stacey Park Milbern, ‘We are our own best strategy to win’. We are continuing to build a thriving disabled present and future, with all our small and big every day acts of crip existence, organizing, art making and love.”
Changing the way we think about ageing: friend of the Debrief Ashton Applewhite is one of the Healthy Ageing 50 selected for the UN Decade of Healthy Ageing. Ashton challenges ableism and ageism: get to know her through her TED talk or her writing.
Speaking of the way we organize, I learned that there's a project on Wikipedia to improve articles on accessibility and disability issues. They are developing overview pages on disability in each country, with the pages on Disability in Australia and in South Africa being among the most developed. Thanks to Roger Conroy for telling me about their work (and that they're looking for contributors who can access non-English sources). Roger is also behind the very useful Disability News South Africa page on facebook, and twitter.
Much gratitude for all the good vibes supporting me on my rehab journey. Thanks also for honouring me with stories of how you've needed to do health advocacy for yourself or your loved ones.
Sincere thanks to everyone that gets in touch with comments, feedback, further information, or shares this with their friends. For me, interactions with readers are the most motivating thing about putting writing into the world. Especial thanks to the reader in Iran who could share such beautiful words at this time.
Many thanks to readers and Sightsavers for support. These newsletters are produced by me, Peter Torres Fremlin. Opinions or mistakes are mine.