The progress we made is at risk
Happy Lunar New Year! While we're digesting the latest all-you-can-eat news buffet, it's time to open the Debrief mailbag.
We see how the global recession is affecting disabled people in Bangladesh, how ancient history challenges our ideas about progress, and cutting-edge work done by Debrief readers.
Tan Kuan Aw's illustration welcomes us into the Year of the Rabbit. Kuan Aw also shares his art on Instagram. To see how he works, here's a short video of him painting the rabbit (alt text in the video description).
And, three years since we started: this is the 50th Debrief! Thanks for being along for the ride. I can't wait to see where we get to for the 100th.
Losing what we've achieved
The economic and cost-of-living crises continue around the world. Outside of a few richer countries, we don't have information on how it's impacting disabled people. To get started on understanding this, I spoke with my friends in Bangladesh, who updated me on what the country is facing and how that plays out for disabled people.
Bangladesh certainly isn't the worst-hit at the moment, but it's facing economic downturn and uncertainty as its ready-made-garments sector has less demand and increased costs, remittances from workers abroad decrease, and foreign reserves are precarious. Essential food items have soared in price, leaving people with low incomes to compromise on their intake and nutrition.
Where the garments sector had been a key source of work for disabled, employment contraction leaves people unemployed and without ways to find work. Likewise, as international donors limit support to civil society, the non-profit sector also contracts as a source of employment and assistance to disabled people. For the almost one million Rohingya refugees, cuts in budgets for humanitarian response means that “threadbare disability support faces uncertain future”.
Less work, and higher costs. As well as the cost-of-living crisis faced by the population as a whole, disabled people see their disability-related costs increase. Albert Mollah of Access Bangladesh told me that some imported assistive devices had as much as doubled in price.
While the disability benefit was increased last year from 750 to 850 Taka, that's still less than $10 USD per month, and has never been done on the basis of assessing need. Lack of support has already led to tragic results. Last week, one mother, who had lost her husband to covid, took the life of her 22-year-old disabled daughter. An all-too-similar case happened just last month.
Even as he gets increasingly desperate messages from disabled people facing isolation and distress, Albert is trying to adapt and stay positive. Access Bangladesh has done mental health first-aid training for its staff and grassroots disability organizations across the country. Access is looking to support disabled people into different kinds of work outside of factory and office jobs. And in its advocacy, the organization is trying to to ensure there aren't cuts to disability benefits as the year unfolds.
A more sobering take comes from Sohel Rana, a dear friend who welcomed me into the disability movement back in 2009. He warns that economic and livelihoods challenges are closely tied to rights and dignity. The progress that we've seen and been working for in the social position of disabled people is at risk of being undone.
How ancient history resists our stereotypes
Since we spoke about Tutankhamun and his potential disability, I've been enjoying papyrus-based correspondence with Egyptologists.
During my years coming in and out of Egypt, I was surprised to see, in a Cairo Airport souvenir shop, a one-legged statuette with an erect penis. The shopkeeper explained this ancient Egyptian God Min had lost his leg, and so stayed at home while the other men went off to fight. They came back to find all the women pregnant. I put this in a disability gain agenda (under the “toxic masculinity” subcategory). Min's disability had been a big part of supposed achievements.
But an Egyptologist friend poured cold water on these ideas. While Min was a central deity of “fertility and possibly orgiastic rites”, his amputated leg is a much more recent myth. Modern storytelling has room for inspiration from representations in profile, both legs wrapped together. Other “guides” in present-day Egypt tell a less fun story that his leg was cut off in punishment for all the pregnancies.
As with this shopkeeper's story, we need to get beyond contemporary views of disability, both mine and his, to understand experiences of disability in the past. In the way we talk about Tutankhamun, for example, archaeologist and historian Kyle Jordan warned me:
“I think it's still inconclusive to say whether Tutankhamun was ‘disabled’ or not. The argument, at present, has little to do with considering his lived reality and has more to do with people's own misgivings about the social insinuations of such a label, disregarding the fact that such insinuations are a modern concern and not necessarily an ancient one.”
Recent work by Alexandra Morris similarly argues that ableism in historical scholarship has led to the “erasure of disabled people from historical narratives”. In her study of the art and artefacts of Ptolemaic Egypt she sees representations of disability that aren't based on stigma and finds the presence of a disabled elite (war wounded were granted positions of authority, for example). Her bold conclusions give an important counterpoint to what we might have expected:
“the ancients had no concept of lowering expectations of those with disabilities. It was part of life to be dealt with and lived with. Societal accommodations existed both for children and adults in terms of training for jobs that individuals could perform, and assistive mobility devices for both children and adults in terms of walkers, walking sticks, prosthetics, shoes, and animals.”
Among the well-known representations of disability and difference are those of little people, including the amazing character, and defender of good, Bes. For a confirmed King with club-foot, there is Siptah. For an overview on disability in ancient Egypt, you can see a bracing talk by Kyle, exploring how they gave attention to and made accommodations of physical and mental difference: “Man is clay and straw // And God is his potter // He overthrows and He builds daily.”
I'm grateful to Emily Smith-Sangster, who generously guided me in this “blooming subfield”, and highlighted folk on twitter to follow for more:
- Alexandra Morris @Disabledarchaeo,
- Kyle Jordan @HorusofNekhen,
- Debby Sneed @debscavator
- Hannah Vogel @hannah_vogel8.
Looking back for a better view
In the much more recent past, the Debrief has been covering disability news since January 2020. One of the things that it has shown me is that there's often urgent attention to issues and then a subsequent neglect to assess predictions or reflect on how things happened. So I will try to introduce retrospectives on the issues as another tool for us to understand disability in a changing world.
Way back in the first edition of January 2020, the world was very different and so was the Debrief. I was surprised to look back and see how issues that feel extremely current were there from the beginning, including discrimination by artificial intelligence and how disabled people can get caught in disasters. Big businesses were already looking at disability inclusion, and that continued to grow exponentially in the last few years.
There was a serious oversight in the first Debrief: only the very briefest mention of China, and no news on covid, even as it spread quickly. January 2022, in contrast, has a lot on covid. As Western countries suddenly abandoned measures for pandemic control, disabled people raised urgently raised the risks. This is still hard to evaluate, in part precisely because some of the measures being abandoned were measuring what was happening, and in part because the virus is still with us.
On the one hand, the full extent of our fears did not come true. Vaccination and immunity did substantially change the severity of the disease. On the other hand, we see, in the UK for example, the lasting effect of the pandemic contributing to excess deaths among the worst in the past 50 years. Currently it's China's turn to open up restrictions, and while the government seems to underestimate the number of deaths, public officials speculate 80% of the population has been infected in the past few months. As for me, I kept pretty covid cautious through the year, and the first time I ate an an indoor restaurant since March 2020 was just last month.
Beyond Covid concerns, the first edition of last year had some provocations that echoed through the year. I appreciate the section on culture as what I was watching then still resonates. In particular the Neil Marcus quote that “disability is an art, an ingenious way to live” is something I can take as inspiration to guide the Debrief, trying to bring the fulness and creativity of our disabled lives to this newsletter.
Policies and committees are not enough
Debriefers have been busy doing work that helps understand the disability movement and inclusion efforts more thoroughly. I love when people share what they've been up to. In this case, it's publishing things, but I'd also love to hear from readers who aren't publishing anything. It's important to know about challenges not just successes.
In the US, Ben Mattlin has just published Disability Pride: Dispatches from a Post-ADA World. You can see more about it in this Time essay on how he learned from the generation of disabled activists that came after him. He told me:
“As a lifelong crip, now age 60, I wanted to better understand the disability community as it exists today--particularly the generation most directly affected by the Americans with Disabilities Act of 1990. Frankly, I feared that younger folx had grown complacent. I could not have been more wrong. Disability activism has only expanded. It's grown deeper and broader and more diverse than in my day, all of which is good. But of course, I also learned that there is so much farther to go.”
“Though my research was primarily focused on the U.S., I did try to represent the international disability community. In some ways, other countries have made progress that we here in the U.S. can only envy. Yet the ADA remains an international reference. Why is that? And how can disability activists in other countries do a better job than we've done in recognizing the contributions of and intersectional issues facing nonwhite and/or LGBTQIA+ disabled people?”
Also recently published is Leda Kamenopoulou's Inclusive Education for Learners with Multisensory Impairment to synthesize best practices and research. She wanted to know if some learners were being left behind and in particular look at the situation of deafblind learners in education:
“Given the current global agenda, urgently calling for inclusive and equitable quality education and lifelong learning opportunities for all, I see it as paradoxical that very little attention has been paid to learners with the most complex needs, for whom inclusion in education can be very challenging to achieve without bespoke strategies, flexibility and creativity. I argue that ignoring the learners, who might challenge the system the most, is quite simply no longer an option and that by focusing on the most vulnerable, we will better prepare future teachers to make inclusion in education for all a reality - and not a utopia.”
Also recently out is the Global Business and Disability Network's tool for companies to self-assess how they are doing on disability. Susan Scott Parker helped design the tool and she tells me how they made it to be “challenging but achievable” so that it can be credible to both businesses and persons with disabilities. “Going beyond legal compliance and towards universal principles”:
“The tool clearly differentiates between what must be done to deliver disability equality – and what is helpful when promoting a disability confident culture. Policies and committees are not enough. We stress the importance of named business leaders being held accountable for improving their disability performance. Best practice cannot be delivered by giving the job to HR or a Diversity manager – we are looking for evidence that leaders across the business are engaged.”
The books we're not writing
Ask Me Anything? If y'all have questions for me it would be good to do an Ask Me Anything edition of the newsletter. Let me know what you'd like to know about my own disability experiences, about the Debrief, the books I wish I wrote, the work I've done on disability or my Strong Opinions About Many Subjects.
Let me know about the book you're not writing, questions you might have for me, or anything else. Leave a comment, or find me elsewhere.
The illustration of the rabbit and plum blossoms is by Tan Kuan Aw.
Thanks for all my correspondents and all of you whose conversations and ideas add so much to the way we can cover disability. Especial thanks to Sohel for a conversation that initiated the section on Bangladesh. Thanks also to Áine for a review of a draft of this post.
Thanks to readers and Sightsavers for the support that keeps this going.