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SUZANNE STOLZ, ED.D.
Associate Professor and Associate Chair, Learning and Teaching
Mother Rosalie Hill Hall, School of Leadership and Education Sciences, Room
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5998 Alcala Park, San Diego, CA 92110
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Anti-Ableist Teaching https://www.antiableistteaching.com/
---------- Forwarded message ---------
From: Disability Debrief disability-debrief@ghost.io
Date: Wed, Mar 20, 2024 at 6:01 AM
Subject: Finding our future
To: sstolz@sandiego.edu
The crisis at IDA, hierarchies, poetry, and more
Finding our future
https://www.disabilitydebrief.org/r/d30d6ae0?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
By Peter Torres Fremlin • 20 Mar 2024 View in browser
https://www.disabilitydebrief.org/r/a5927a7e?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
View in browser
https://www.disabilitydebrief.org/r/6cedf3b8?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
Dear Debriefers,
It's been a while since I last opened the Debrief mailbag
https://www.disabilitydebrief.org/r/33411f36?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0,
and readers are, as ever, thoughtful, informative and creative.
Last month's piece on the crisis
https://www.disabilitydebrief.org/r/dd9a914e?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
at the International Disability Alliance (IDA) quickly became one of the
most viewed newsletters I've published and has raised key questions about
the future of the disability movement.
Beyond those, we discuss gatekeeping, see why we need to pause more often,
and have a poetic response to what couldn't be said as a child.
If this was forwarded to you, *subscribe here
https://www.disabilitydebrief.org/r/5a5a32c1?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0.
*
Disability Debrief is supported on a pay-as-you can
https://www.disabilitydebrief.org/r/042f0873?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
basis. Thanks to Leanne for a new contribution.
Finding our future
It's good to see how the Debrief coverage made space for the first public
discussions of what's happening at IDA. People have responded on linkedin
https://www.disabilitydebrief.org/r/fa61de4d?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0,
the CRPD Forum
https://www.disabilitydebrief.org/r/5e5a1730?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0,
and the post itself
https://www.disabilitydebrief.org/r/a81dc6f4?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0.
Here are some of the key themes and questions coming out of the many
discussions I've had since that piece.
Accountability for what happened. Has responsibility been taken for what
went wrong, and what are the repercussions, legal or otherwise?
Governance that balances professional and political needs. Organisations
of IDA's size, with multi-million dollar annual budgets, must have a board
that has the skills needed to govern them. And in IDA's case, it also needs
political representation of disabled people. But the profiles, skills, and
responsibilities are quite different for each function. How can its
governance include both?
*The risks of the crisis. *My piece shared concerns I was hearing that the
disability movement would be damaged by the crisis. Since then I've heard
from correspondents directly within the ecosystem of organisations
supported by IDA and worrying if their funding continues. Others are
involved in transnational processes where IDA plays a key role for
disability work and they worry work might stall.
The future is feminist. Diana Samarasan and Catherine Hyde Townsend argue
that “our disability future is feminist
https://www.disabilitydebrief.org/r/d4f0dbc6?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0”.
They point to the disproportionate dominance of men in IDA's leadership and
ask “is it just us or do we still have a gender problem in the disability
community?” As they say, IDA's renewal is a chance for the organisation to
learn from, and by led by, amazing feminist leaders.
A time for new strategies. Many feel a need not just for putting the
house in order but changing the way we inhabit it. People are discussing
how IDA and its partners could shift in strategy and if there are
alternatives to the model of one organisation to represent us all. How can
leadership in the movement be less oriented to lobbying and more to
uplifting and strengthening others? What are possibilities for organic
growth rather than top-down change?
More questions than answers. The crisis has left a lot of uncertainty
about the way forward. It's easy to feel frustration, or worry that old
dynamics are already coming back. But there is also hope that promises of
renewal can be made real.
Hierarchies and horizontality
Alberto's piece last week on gatekeeping in the disability movement
https://www.disabilitydebrief.org/r/6d7a2670?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
has resonated widely. Many people felt a personal relief at reading a
description of what they're going through. Mona Visperas, for example, said
“I was doing my best to hold back tears because it perfectly encapsulates
what I feel here in the Philippines.”
Another reader who resonated with it was Ariel Baska. And Ariel also
pointed out that the lack of a gendered view was a serious gap in the piece:
“As a multiply disabled artist/organizer in the realm of film, the
gatekeeping conversation here seems particularly important to me.
Unfortunately, I chose the most expensive art form, where disability
funding is controlled by non-disability led organizations. I often feel
alone in my fight as middle class white men in wheelchairs are almost
always prioritized at the expense of everyone else in the movement.
Even though the phenomenon itself is distressing on the whole, I am so
pleased to read about this from a Global South perspective, and to gain a
deeper understanding of the international implications.
But the lack of acknowledgment of gender is also upsetting to me, as
someone who was born a woman, but chose an a gender identity. Misogyny is
still a big part of the gatekeeping of the disability movement, in spite of
Judy Heumann's legacy, as is anti-Blackness, anti-transness, even though we
owe so much to black disabled trans women in both the queer and disability
movements.”
The piece has provoked reflection among those of us that get put into the
position of “experts”. Personally it's also made me think about my role as
editor of the Debrief. I am constantly making decisions about what I do and
don't include.
Another dimension in response has been questions about the risks of
abandoning hierarchy to more horizontal approaches. For more on this,
Alberto points to a classic essay from the women's liberation movement in
the US, Jo Freeman's ‘The Tyranny of Structurelessness
https://www.disabilitydebrief.org/r/d44c941f?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0’.
And for a more recent exploration, Vincent Bevins's book If We Burn
https://www.disabilitydebrief.org/r/fda8ef44?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0:
The Mass Protest Decade and the Missing Revolution. It argues that
opportunities for change created by protests could not be seized because of
a lack of organisations.
Too big to contemplate
Anna Ruddock appreciated the “quality of wisdom” that Julia Watts Belser
showed in our conversation on surviving the climate crisis together
https://www.disabilitydebrief.org/r/9c011de7?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0.
Anna draws a contrast
https://www.disabilitydebrief.org/r/f4e7e5b5?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
between that “stillness” and the “superficial noise we're usually
surrounded by”, and how it impacts our work:
‘Speaking of the “massive shift in resource allocation” that is needed to
alleviate the precarious positions that so many disabled people are forced
into - the “dramatic rethinking of social services, community networks,
support, employment” – Julia notes that this scale of thought is not always
well-received because “it’s so big”. But she insists that it is important
to name it. Yes!
I've had many experiences of being silenced at work for drawing attention
to the structures and systems of power that are at the root of a problem we
are supposedly trying to solve. Maybe you have too. Some people react
defensively, some dismiss it as too big to contemplate, and some people
scoff and imply there's something intellectually unsophisticated about
critiquing the ravages of extractive capitalism - usually as a means to
deflect their own difficult feelings about it all.
And so we continue to tinker around the edges. Because that's what we're
paid, or funded, or instructed, to do.
We need to pause more often. We need to stop and meet each other; to look
up and acknowledge that “it's so big” and that many of us are complicit in
much of it; to imagine better futures anyway, and see if my small piece of
work is complementing yours, and if we can edge closer to the heart of the
matter, together.’
Flawless evacuation
At the start of January there was a crash at Tokyo airport when a passenger
jet collided with a coastguard plane on the runway. While those in the
smaller aircraft died, a “flawless evacuation
https://www.disabilitydebrief.org/r/8b85d028?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0”
got all 379 passengers and crew to safety.
Thanks to a tip from Yoshiko Miwa I heard that there were two wheelchair
users on-board. We often assume the worst, so it's great to hear they also
got out. Following up with Japan Airlines, I got a confirmation, albeit
without details:
“In the JL516 case, we are not sure how the two wheelchair passengers
evacuated, but we are sure that the cooperation and assistance from our
customers played a significant role in the successful emergency evacuation.
The communication and support among passengers in the cabin, as well as
their willingness to follow instructions to leave their luggage behind,
greatly contributed to the overall outcome.”
Invisible tattoo
I always appreciate being able to share poetry Debriefers have written
https://www.disabilitydebrief.org/r/0e6b3dbb?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0.
Dawn Matthews shares this one that she wrote for Disability History Month
last year.
Dawn became disabled at nine years old, and wrote this poem her
nine-year-old self, giving words to the emotions and questions she couldn't
articulate at the time.
Invisible Tattoo
Was I born a babe with your name
invisibly tattooed on me,
or else by stealth befriend me?
did I crawl then stand, innocent and brave
but not as tall as those beside me?
did I run and jump and yell and shout
so that everyone could hear me,
or were the words I learned and tried to say
fall as heavy snow around me?
and when you showed me how to play
perhaps they didn’t see me
and feeling, hurting, being harried
would that be the making of me?
for all that time I would choose
the ways that will define me
to walk the walk and hold the truth
of what you will know about me
and all the while they line up for
their chance to overtake me?
or did I grow delinquent DNA
a blackened iron web of pain
that ebbs and flows within my veins
and will not rest or go away?
just smile and make the best of things
my cards are on the table
maybe help me understand
why I’m tattooed disabled?
Almost a secret
*“Almost a secret.” *From the US, Steven Davis wrote to tell me about Able
accounts, which are savings and investments accounts for disabled people.
They have a tax-advantage and are potentially a way to navigate how some of
the way other disability systems force recipients to stay in poverty.
Steven has done a write-up
https://www.disabilitydebrief.org/r/809f4002?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
so more people can know about a program that's “almost a secret”. He is
interested (as am I) to know if there are similar schemes in other
countries.
*Crip cinema. *Crip Cinema Archive
https://www.disabilitydebrief.org/r/cc2fccdb?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
is a new project to document disability on screen, and has a carefully
curated list of films. Its creator, Emily Simmons, tells me she is making
it as a resource as well as a launchpad for further discussions “to imagine
better crip film futures - in front of and behind the lens - and make them
a reality.”
*“Mind blowing disabilities”. *Johnny Sawyer wrote to tell me about Film
Freaks
https://www.disabilitydebrief.org/r/3db1dc46?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0,
a debut novel which is “the exact opposite of a Marvel Avengers style
story”: “Forget superpowers, these Heroes have Mind Blowing Disabilities!”
*“One of my favourite spaces.” *Anna Maria, who wrote on the Debrief
https://www.disabilitydebrief.org/r/6b1bf393?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
last year from Bengaluru India shared a fundraiser for Academic Audio
Transcription
https://www.disabilitydebrief.org/r/ad46dc24?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0.
Anna has gotten a lot from working with them:
“It's one of my favourite spaces to be able to work with and has given me a
lot of confidence with regards to how I approach work with my own
disabilities, so I would love to see people pitch in and for them to be
able to make it past this.”
Cheers,
Peter
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Acknowledgements
With thanks to all of my correspondents in this piece and the many others
that help me keep informed and understand disability news around the world.
Thanks to Áine and Alberto for looking at an earlier version of this piece.
And thanks to the individuals and organizations whose support
https://www.disabilitydebrief.org/r/3c727c8d?m=c72754e2-d89d-48df-8c12-8c1dd086f8c0
makes
the Debrief possible.
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