Reader Rebrief: classifying disability, Russia, and digital media
This week we’re opening the mailbag to see reader correspondence, and we're welcoming Sightsavers, who opened their cheque-book to support the newsletter.
Reader correspondence takes us around the world. Issues that came out of the piece on Ukraine take us into challenges for disability classification before the invasion, and an update on the disability sector in Russia. And we hear more about Marcia Rioux's work and impact from her colleagues.
It's been great to hear about the places folk are reading this newsletter from, and that takes me into media trends and disability. One trend is that funding is hard: so it's great to announce support to the Debrief from Sightsavers.
And if you didn't see the last edition, reader Sander Schot said:
“I loved the piece with Abner. The end of the interview is why I love to work on disability rights. It is not work, it is people’s lives. Energy that never fades.”
Writing about Ukraine, I started exploring their system for classifying disability into various groups, inherited from the Soviet era. Thanks to Ievgen for sharing a detailed article from 2019 on corruption in these certifications of disability (I read it with Google Translate). This article shows how things worked before the invasion and is a fascinating example of what can go wrong.
In giving out disability benefits, governments want to work out who is disabled. This is to make sure that people who need it can get the supports; and to make sure that people who aren't seen as disabled don't get them. This article is a wild ride into corruption within that system in Ukraine, including exploration of 95 convictions for this, details of the bribes given, and, errr, pictures of people with the fancy cars they may have gotten from taking bribes.
The heart of this is a classic form of corruption: officials who are gatekeepers of state benefits, or those who can mediate the process, can get bribes from people seeking the benefits. The cases in Ukraine show bribes taken by officials in the commissions that determine disability as well as the doctors or medical institutions that provide evidence to show your medical condition.
This creates a “savage” situation for people who acquire disabilities and need to get the certification. As well as the difficulty of the situation they are in, they “need to commit a crime to make life a little easier”. It's worth adding that corrupt practices will only be one of the barriers for people with disabilities to access benefits. Often the availability of information, requirements for certification, or multiple assessments also stop people who need these services getting them.
I got acquainted with the post-Soviet systems of classifying disability into groups in some eye-opening trips to Kyrgyzstan and Tajikistan several years ago. People there told me about the other side of corruption: that people without disabilities could get hold of these benefits. This mistaken inclusion, real and/or perceived, diminishes faith in these systems.
Efforts for reform in Ukraine seem to have involved a quite detailed plan to change the way certification is done, the institutions that do it, and the way that was linked with rehabilitation services. The plans were shelved. My short visits in Central Asia also suggested how difficult change would be. Among people who might not want change are people with disabilities who are currently certified as disabled: even though a system doesn't work correctly for you, you can have a (very valid) concern that an alternative would be worse.
Stepping back into a wider perspective, these challenges are certainly by no means limited to this type of classification system. Recent work in Bangladesh, for example, estimated 24% to 67% of the amount of disability grants were being embezzled. One striking thing about Ukraine was that so many cases had gone to court. As the article points out, this didn't fix the problem, but it is a good sign that attention can be given to where it's not working, and the article is an impressive investigation.
And, to share a small insight into what my work in international development can look like. In my visit to the Kyrgyzstan and Tajikistan, someone told me that the classification system was “absolutely corrupt”. I'm a professional bureaucrat, so I watered this down to an “impression that corruption is a serious risk”. Even that was too spicy for the project manager, who had it removed. You can see why I prefer writing this newsletter to those reports.
From Russia, looking for love
To get insight into how Russia's isolation touches disabled people there, I've been corresponding with a colleague in Moscow. Prices of food and other goods are very high. My colleague writes that “it’s getting worse” and “thanks God” to still have a job and be able to still afford what they could before the war. There are serious difficulties:
“First, adults and parents of kids with disabilities are scared to lose the possibility to get medicine that they need for making their health conditions stable. Secondly, the situation is getting much worse for non-profits serving persons with different disabilities. They don’t get grants or they get smaller ones. So, they can’t launch new programs. Organizations have to close branches if grants are not provided by foreign partners.” (May, Anonymous for safety)
My colleague shares that some persons with disabilities are, like many, looking to leave Russia. People with experience in the accessibility and inclusion field are looking for work opportunities that could help them get out. If you would be open to connect, or have any information or advice on how they could approach this, please let me know and I will pass it on.
Around the world, the disability community relies on networks of international solidarity and support. A world at war is one that breaks the connections that we need to thrive.
Memories of Marcia Rioux
Speaking of the international connections we make, friends and colleagues added to the memories I'd shared about Marcia, who passed last year.
Debra Ruh told me of her sadness of losing Marcia Rioux: “She was a force of nature. I only met her a few times but she stood out”. Debra shared a post on Marcia's contributions to the movement, “her light was bright”:
“She was a blessing to the global community of persons with disabilities and she will be missed by many of us. […] She is and will continue to be missed. She created a beautiful legacy that will continue to have #SocialJustice and impact.”
Paula Hearn worked very closely with Marcia and shared how she reflects on Marcia's work:
“It still jolts me a bit when I remember she's gone, hard to imagine she's not out somewhere advocating for disability rights. She gave so much to the disability movement, and along with others paved a path for our current efforts today. It's eye-opening to think about all the work that was done in the past by those who came before us in the disability movement, and we wouldn't be where we are today without the foundation work that her, Bengt Lindqvist and many many others did.”
Another friend who I know courtesy of Marcia is Cameron Graham, a colleague of hers from York university. Cameron shared some insights into how she worked:
“Marcia was a fierce advocate for disability rights and as intelligent as can be. When I was chair of the Canadian Abilities Foundation, she taught me just about everything I knew, and held me to a high standard that I would never have achieved for CAF without her.
She was utterly pragmatic, too. When we visited an intransigent misogynist who held a high public office in Bangladesh, she had me act as if I was leading the whole delegation and practically disappeared from the room herself. She had no interest in trying to educate this guy about anything but disability rights. She was completely willing to use an instrumental economic argument to make her point.
I remember her as an organizer more than anything. Her ability to get people together, train them, and accomplish things through them was unparalleled.”
The Debrief and directions in digital media
It's been great to see the range of places that are sharing this newsletter. On the disability side, Kevin Gotkin's excellent Crip News highlighted the essential critique that Áine made of climate reports leaving disability out. For a general readership, it got a shout-out on Substack's own newsletter from Kana Lauren Chan, friend of the newsletter who writes beautifully about daily life in a zero-waste village in Japan.
And, in international development, it turns out that Disability Debrief is an example of how writing in our sector has shifted from personal blogs to email newsletters. That's the reflection of Tobias Denskus who for many years has kept us up to date with reading material at Aidnography. Organizations working on disability should take note of these trends in how we connect and consume information.
Using newsletters speaks to who we're reaching and who we’re not. My original idea of audience for this newsletter was colleagues who, like me, spend too much time on their computers. My audience has expanded since then, but this format (and language) will only ever reach a small segment of those around the world interested in, or working on disability.
A disability view also raises the question of accessibility barriers to creating and consuming this information. When I started this newsletter, one of the reasons that I didn't include images was that the Substack didn't allow for alternate text. It does now, but still has accessibility limitations for readers, and even more substantial accessibility barriers for in using its system as an author. My wish-list items for how this newsletter can grow include an easy-read or plain English version, and translations into other languages.
One of the trends that Tobias has written about over the years is the emergence of facebook groups like Fifty Shades of Aid and the discussions held there, more diverse than blogs or newsletters. Social media has many problems, but it's where most people are at these days.
Related to disability, one of my favourite groups on facebook is Accessible Travel Club, a community to crowd-source accessibility info, wherever you travel in the world. It's been life-changing for me, and I'm sure for many others, in terms of what it makes possible and showing you what other folks are doing. Further, I've heard that many Whatsapp groups have played important connecting roles in our sector.
Some organisations are trying to create new spaces for exchange. EnableMe, for example, are making online forums for exchange on disability and chronic illness including one recently launched for Ukraine. However, the model of making a separate site, or application, faces the tough challenge of how to recruit folks onto a new place, rather than finding them where they already are.
There's an important way that the Debrief, and the other newsletters Tobias mentions, don't fit in the general Substack trend: we’re not putting content behind a paywall. Some disabled journalists are exploring this model - in the UK, for example, Lucy Webster's View From Down Here has free and subscriber-only content.
For me, I want to make this information available to everyone. So how do I keep doing it? Glad you asked, let’s get onto that.
Money can't buy happiness (but it can build a newsletter)
I'm very happy to share that I got some more support to keep growing this newsletter. Sightsavers, an international development organisation, has pitched in to further develop the Debrief. They join readers and other organisations in supporting this as a resource for the community.
Sightsavers are one of the leaders in international work on disability rights. I regularly share their campaigning work as well as the resources they develop on disability inclusion. These have been coming particularly from Inclusive Futures, a coalition of organisations that Sightsavers plays a key role in.
“Disability Debrief, with its breadth and depth, in content and interrogation, contributes to our work on disability inclusion. We have to innovate and Peter challenges our assumptions and helps us think laterally and creatively. The Debrief is a valuable, often witty — sometimes provocative — but always interesting read.” — Tracy Vaughan Gough, Social inclusion, Sightsavers
One thing that I particularly like about Sightsavers is they are public about their efforts to make their own workplace inclusive of persons with disabilities, and reflecting on that journey. It's refreshing for an organisation to be open that they're learning these things at the same time as they're helping others on the same journey.
I'm a freelancer, and funding for the newsletter means I can say “no” to possible assignments and “yes” to building this newsletter and bringing in folk to do that with me. And, as well as the practical difference, support is very motivating for me to keep raising ambitions on what the Debrief can become.
Disability Debrief is by me, Peter Torres Fremlin. Thanks to readers for the support that powers the newsletter, with new support this month from Ant. The Debrief is now produced with support from Sightsavers. Tan Kuan Aw did the newsletter logo.
Many friends and colleagues have helped motivate my work and think through the best approaches. I don't mention everyone, but this month I particularly appreciate Shashaank Awasthi advice on going forward.
Do be in touch, I love hearing from readers. On email you can press reply, or online you can leave a comment.