A small group of people
Hello Debriefers,
I'm off on a break for my birthday, so it's a short one.
I'm leaving you with highlights from my recent reading and listening: on movement building, assistive technology going out of date, and the experience of acquiring disability.
If you're hungry for more disability news, then explore the latest edition of all-you-can-eat links: benefits for Bond villains.
I'm also immensely relieved to be able to share some news that I just heard from Sudan.
Blessed by the people
Khadidja, Anna, and their mother managed to safely escape the violence. Two days ago they made the journey to a family home in Eastern Sudan. Anna needed substantial assistance along the way to get in and out of vehicles. Khadidja tells me that strangers came out of nowhere to help “every step and stop of the way”: “we have been blessed not by infrastructure, but by the people of this country”.
Solidarity and activism
Kokila Annamalai wrote “Comrades: a complicated love story”, a beautiful essay exploring solidarity within activist spaces. Her work is mobilising against the death penalty in Singapore, and she reflects on building progressive movements:
“A small group of people who already happen to be like-minded cannot, on their own, change the world. Such spaces are important for comfort, for commiserating or venting with people who get us, to draw energy from resonance, to quell self-doubt. But to end the rampant violence, injustice and suffering we care so deeply about, we must build people power – this requires us to care for, respect and work with people who hold very different beliefs from us, or don’t always act in ways we want them to. This also means we have to win others over to our side, working against the very powerful forces that are determined to keep us divided, misinformed and complacent. It takes tremendous effort, perseverance and trust-building.”
Planned obsolescence of assistive devices
An important essay from Michele Friedner explores the cost of cochlear implants becoming obsolete. Friedner's research focusses on deaf families in India struggling to afford the compulsory updates of technology:
Cochlear implants are not like phones or microwaves or laptop computers. Companies market these devices as “bionic ears,” using slogans such as “Hear for you. Always.” According to the logic used and mobilized by cochlear implant proponents, children who use implants can and do develop hearing brains, or brains attuned to auditory stimuli and to hearing as a way of processing information. In the absence of a device, this way of life is forcibly, and often abruptly, lost.
The same goes for other neuroprosthetic devices, such as the “bionic eyes” developed by the company Second Sight. The retinal implant device, used by people who are blind or who have low vision to simulate sight, was recently declared obsolete by its manufacturer. The users were terrified by the prospect of having to adjust to life without the bionic vision they had to come to rely on to navigate the world.
We need a stronger term than “planned obsolescence” to describe the close relationships people develop with their neuroprosthetic devices and the profound sense of loss they feel when cut off from their sensory worlds. We need a concept that reflects this violence.
I propose “planned abandonment.”
Curiosity and despair
Understanding deprivation. Sociologist Matthew Desmond talks about poverty in America:
“Poverty isn’t a line. It’s this tight knot of agonies, and humiliations, and social problems, and this is experienced by millions of us in the richest country in the history of the world.”
Everything by myself. Kate Bowler on living with chronic pain:
“I would rather do everything by myself and hide my problems. But I haven't been able to live like that for over a decade now. All my problems are obvious. All my problems are expensive. Every single week, I spend at least 15 hours doing awful health stuff. I'm a part-time job.”
“I look forward to not seeing you again.” Edward Hirsch, a poet in the United States, has found ways to appreciate losing his sight:
“Daily life has a renewed delight and vigor. I am learning new things constantly. The most ordinary tasks, like going to the post office, have become terrifically interesting. In terms of everyday life, I feel that I am finally in there, more mindful and alert, more fully present. I have chosen curiosity over despair.”
The most powerful tool. Facundo Chavez Penillas talks about his work on human rights with the UN:
“There is no better way of promoting change than facing others with our otherness. That first hand experience is the most powerful tool of transformation that we have.”
That's all for today. If you'd like to get me a birthday present, go on then, support the Debrief or tell your friends why they should sign-up to such a brilliant newsletter :)
Cheers,
Peter
Acknowledgements
The Debrief is supported by the people and organisations that read it. Thanks to Sightsavers for continued support.