While we read about disabled people in Peru's protests, we open the Debrief mailbag to see what readers are protesting.
This edition remembers disability activists who have passed away and how they insisted on making the world a better place for us.
We explore alternatives to objectivity in reporting, and a broader view of health care, featuring the bromance I have with my physio. And we get some strong opinions about quota systems and meet Debriefers telling the disability story.
Wheeling the talk
While we've been mourning Judy's passing, thanks to Kuan Aw, Meenakshi and Kathy for sharing news of others our community has lost.
In Malaysia, Anthony Thanasayan passed away age 63. He was an activist on disability and animal rights who campaigned as a councillor, a writer, and founder of Petpositive, a charity for animal assisted therapy. Anthony's connection with animals is movingly expressed in a love letter he wrote to his service dog Zhar.
Kuan Aw met Anthony almost 30 years ago, inviting Anthony to come and speak in Penang. It changed the way Kuan Aw looks at disability:
“He was a true activist, fearless in criticising people who were hypocrites and sometimes acting against people in power. Because of that many people did not like him, including some disabled people. Disabled people with a charity concept were afraid of him.”
In Fiji, Joshco Wakaniyasi passed away age 50. In Fiji he led the Spinal Injury Association and had many roles nationally and across the Pacific region. A tribute from one of the forums he spoke at, Leadership Fiji, remembers Joshco for “his humour, extraordinary memory, and courage to ‘wheel the talk’ as he likes to put it”.
In the UK, Susan Cunliffe-Lister, known by her title Lady Masham, passed away aged 87. A Paralympian and campaigner on disability, she competed in the Paralympic games in 1960, 64 and 68, medalling in swimming and table tennis. This profile of her shares that she promptly lost one of her gold medals after it fell down the side of her wheelchair.
Like Anthony and Joscho, Susan had the gift for connecting with others and challenging the status quo. One close friend described her as:
“She was the sort of person who would talk to whoever she came across and had a gift of bringing things out in people – she really wanted to know what problems people were encountering and to help. She never hesitated to ask the awkward questions – she liked to get straight to the point.”
Not willing to be neutral
I set out a vision for what the Debrief is trying to do with a disability lens on world news and the perspectives disability can bring. It made Lindsey appreciate how the work comes out of writing in community:
“I have always been one who journals… I have deep and complex thoughts that I often have to work out myself before sharing them with others. If you layer imposter syndrome onto that - it’s no wonder my writing never sees the light of day! What a gift to consider that its development is a collective effort.”
Readers shared different work that develops a disability view. Celestine remembered Sara Hendren's book What Can a Body Do? which showed her how disability and accessibility can be creative lenses for how we perceive and change the world. Chris suggested I look at photovoice projects like this one, where participants document their daily lives.
Others brought out the challenges that lived experience and social purpose can pose to some traditional models of journalism. Jody Santos is also exploring these through Disability Justice Project, which sees storytelling as central to social change. Jody shared a quote from Martin Bell, who as a war correspondent, rejected the supposed neutrality of “bystander journalism”:
“I was not willing to be neutral between the armed and the unarmed, between the aggressor and the victim, so I devised what I call the ‘journalism of attachment’, which is not a partisan journalism, it’s not making arguments, it’s a journalism that cares as well as knows and it chooses its words very carefully.”
One of my references for a cross-border newsroom challenging structural barriers is Unbias the News. Their editor, Tina Lee, pointed me to an emerging movement of Solidarity Journalism, which argues that ongoing social justice is newsworthy and that solidarity should be put before objectivity as a guiding ideal for journalism. The pursuit of objectivity encourages journalists “to avoid addressing what matters”, and particularly hurts marginalised communities.
Diagnosing Healthcare's ills
When I called for healthcare to be healed, I wrote that it was misleading to talk about health “systems” given how we might seek to improve our health from many connected and disconnected organisations. I didn't quite take that idea far enough, though.
Áine picked up on the way I'd referred negatively to “traditional healing practices”. I did so to indicate that certain “cures” pursued can be harmful. I was thinking about things like people being beaten so that the bad spirit leaves them. I should have been clearer. It's a point that can also apply to the “healing practices” of Western medicine which can, say, be harmful in their invasiveness or enormous cost.
As Áine pointed out, traditional healing practices – like massage or meditation – can play an important role in our health, recovery and general wellbeing. And these too are areas where accessibility and inclusion are important. This broader conception of what practices can improve our health was not on my radar, and probably also overlooked by the reports I was critiquing.
Many thanks to those who wrote me in solidarity and care after I shared some of the emotional challenges I've been having in my own rehabilitation process. Among them was one of the sources of the pain, sorry, progress: my physiotherapist.
My physio is also called Peter and we have a relationship where he finds what I can't do or what hurts me, and I cuss him out. We've also started playing chess together which, apart from some moments I'd rather forget, has been a way for me to get my revenge on health treatment.
Reading about how I was being hard on myself, Peter noticed the contrast between the emotional support I got from friends and the more functional descriptions he and my surgeon responded with. Peter asked if I'd felt listened to, as he didn't want to dismiss my feelings. It led to him asking himself about his scope of practice as a physio, and how much it should include emotional support and motivation.
That's the first time a healthcare professional has asked me if they had listened well. Peter's reflections are a powerful example of what it means to shift these boundaries between professional and patient. They challenge the silos and specialities of care that the “systems” have established.
A couple of readers flagged further resources. Jamie from the Queer AF newsletter shared how their investigation of Monkeypox showed the same thing: in discussion of illness, “health inequities are the real story”.
Leda pointed me to Managing Chronicity in Unequal States a book of ethnographic research into how people and communities “navigate uncertain and unequal healthcare systems, in which inherent moral judgements on human worth have long-lasting effects on people’s wellbeing”.
Don't hate the player, hate the game
In my recent curation of the latest news I shared an article about how employers in Japan were gaming quota systems by getting disabled people to work on farms rather than in the regular business activities.
Quota systems are one of the most frequently used methods to promote employment of disabled people. Susan Scott Parker wrote me her “rather strong views” about them, suggesting that the Debrief call for their abolition, “in bright red headlines”. “It was”, she tells me, “the government of Japan that created the policy which encourages these Japanese employers do this”.
When the UN Committee on disability rights asked about employment of disabled people, Susan made the case against quotas. She sees demands for compliance with a quota drown out the message that employers should hire disabled individuals on an equal basis with others. Further, this dynamic creates self-sustaining loops locking disabled people out of employment. Quotas “should be replaced with modern, robust, enforced, disability discrimination legislation that is credible to both persons with disabilities and to private and public sector employers”.
Those who blaze this path
Debriefers have been busy telling the stories of disability themselves. I was very happy to find Qudsiya Naqui's thoughtful and well-produced podcast Down to the Struts with its accompanying newsletter Getting Down to It. Qudsiya told me the motivation for the podcast “was at first selfish”:
“As someone who was in the process of more deeply connecting with my
disability identity, I wanted to share in that experience with those
far wiser than myself who had blazed this path before me. Now, I am
more firmly convinced that the world is better for everyone when
disability and access are centered, and it’s been a privilege to
amplify voices and stories that broadcast this message far and wide.”
Andrew Pulrang, in addition to prolific writing at Forbes, kindly gave the Debrief a recommendation from Disability Thinking Monthly. Andrew told me one of the goals of his work is “to let people with disabilities know that there are authentic disabled voices and disability resources out there”.
Raul Krauthausen, whose links in Disability News Digest are a key source for the Debrief, has written a book. Its German title translates to “If you want inclusion, you'll find a way. If you don't, you'll find excuses.” Raul told me he's deliberately asking “fundamental and often uncomfortable questions about inclusion in Germany,” where he encourages the reader to “confront their own ableism, and develop an idea of how to truly live inclusion on all levels”.
Also pushing back against excuses, Emily Horsfall shared the petition Sightsavers are running, which demands governments make their commitments to disability rights more concrete: “Words are not enough – actions speak louder”. Emily told me the context for this work is events on the international cooperation horizon that offer a chance to influence governments.
Let me know your strong opinions about quota mechanisms or other areas of disability policy and life. Definitely share some of your writing that otherwise isn't seeing the light of day. Hearing from readers helps me share the range of what is going in the disability community and the complexities underneath.
I'm gathering questions for an ask-me-anything edition, so continue to send them in, whether they're about work or life, or my own strong opinions.
The illustration of Anthony with a dog companion is by Tan Kuan Aw.
Thanks to all the Debrief's correspondents and readers for extending these conversations.
Thanks to Peter, my physio, for putting up with my bad language for a year and a half now. Absolutely no thanks to Peter for the one move checkmate I didn't see.
And of course, thanks to readers and Sightsavers for the support that keeps the Debrief going.