Scheming and Dreaming: Building Local Decision-Making Power for People with Disabilities and Chronic Illnesses
Photo of Supervisor Holly Mitchell, a smiling Black woman with shoulder-length hair. She is wearing a pumpkin-orange dress with a layered necklace and several bracelets. She is standing in front of a lush, green landscape including trees and shrubs. Photo by Leroy Hamilton
A couple of months ago, we finished a project with Liberty Hill Foundation – a boards and commissions training specifically geared for (and in partnership with) constituents of Supervisor Holly Mitchell in Los Angeles County. This was a delight, as you can imagine. Supervisor Mitchell is a brilliant policymaker and an inspirational leader who is deeply connected to movements.
And from the start, she asked us to broaden our scope for the training in one specific way. In addition to our usual race-class focus on recruitment, Supervisor Mitchell asked us to specifically recruit grassroots leaders who self-identify as disabled. This turned out to be (as she had predicted) more difficult than we thought. So much of the work we do with partners in LA aims to contribute to power building for low-income communities of color generally. We didn’t have the relational infrastructure to recruit a significant number of disability-identified folks into the cohort, and we specifically weren’t able to implement a recruitment strategy that brought an intersectional lens to the recruitment disabled, low-income and poor Black people, indigenous people, and people of color for our training and placement program.
The program went on to be successful in all but that criterion. But it was an important one to Supervisor Mitchell, Liberty Hill, to Cities & People, and to me personally.
As a result, I’ve been thinking a lot more about disability movements and policies lately, and about how we can use our resources and knowledge at Cities & People to support and advance those movements and policies. It’s not new territory for me, personally or professionally. Personally, I’ve been living with autoimmune disease since I was a teenager, and so have spent the last forty years or so trying to figure out who I am in a world made up of both a built environment and powerful assumptions and stereotypes that don’t serve me well, either physically or within the realm of my self-perception. And professionally, I’ve studied and taught college students about public health social movements that have focused on eugenics, disability, disease stigma, and healthism, particularly with an intersectional lens.
You know that joke about retail therapy? I do that. If I’ve got a problem I can’t solve, I throw a bunch of books and tropical plants (and sometimes yarn) at it until I feel like I’ve learned enough to try again. So now I have six additional philodendrons, five new sansevierias, five new hoyas, an epipremnum, a scindapsus, two monsteras, and a syngonium, and about a million books and articles about disability policy and movements, living with disabilities, and the future of disability.
I want to tell you about three of them, and about what happens next for Cities & People on this front.
Marta Russell, Capitalism & Disability: Selected Writings by Marta Russell (Haymarket, 2019).
A red book cover almost fully covered by a lighter red ampersand. The words Edited by Keith Rosenthal are at the top in small, black letters. Much larger and also in black, the words Capitalism & Disability are located in the center. At the bottom, the words Selected Writings of Marta Russell appear in yellow.
Marta Russell was an American writer, leftist, and disability activist, mostly active in the 90s and early 2000s. Six years after her death in 2013, Haymarket published a collection of her work, and, reading this collection recently, I was struck by how refreshing it is to take a break from the current (though much needed!) steady stream of identity-centered disability texts, and to really dig into a strongly stated, hyperfocused theory of capitalism and disability – what Russell called “the money model of disability.”
Through Russell's work, we can more intricately understand just how strongly, and just how structurally, capitalism and disability are linked. While she was supportive of non-transformative policies and reforms that protect and advance the agency of people with disabilities within our current, non-disrupted society, Russell staunchly stood by the assertion that there would be no full liberation of disabled people under capitalism. Once she had established the more straightforward application of Marxism through which one can describe the disabled person as non-productive (non-producing) member of capitalist society, Russell, in her later essays, took on increasingly thorny issues, such as how the logic of capitalism shapes (and distorts) our thinking about the “remedy” of in-home care and impedes the progress made by the earlier disability rights movement for the deinstitutionalization of disabled populations.
The final chapter in this collection includes the (now even more) urgent essay, “Un-Natural Disasters: Reflections on Hurricane Katrina,” a key reading for those who seek to understand the nuanced intersection between climate change, capitalism, and disability.
Laura Mauldin, “Care Tactics.” (Baffler, July 2022).
A photo of a woman with curly, short hair and sunglasses wearing a black-and-white striped dress, sitting on the grass and laughing next to a baby with a sun hat and a stuffie.
I stumbled across Mauldin’s essay one morning last month while I was having my coffee, sitting in my specially tilted chair that supports my spine and pelvis “just so” and keeps my feet from going numb (it’s really just a mid-century knock-off I got at a big box store), drinking coffee from a well-weighted mug with a finger loop that accommodates three fingers rather than two so I can hold it with less pain (thanks, Fiesta Ware), and waiting for my daily morning stiffness to subside so I could start my work day. In reading Mauldin’s catalog of MacGyver-like “hacks” that disabled people use to maneuver their way through daily life, I felt a sense of kinship.
While Mauldin’s subjects thrive (or at least survive) by making disability aids from repurposed household objects and build a strong community by coming together on line to support one another in figuring out how to maneuver through everyday tasks, the tech world continues to pat itself on the back with the production of what design critic Liz Jackson calls “disability dongles,” failed disability aids that are meant to solve a problem for disabled people but which didn’t include disabled people in the design and testing. An example – a reiteration of Google Glass that teaches autistic children to make eye contact with other people, a gap that would more respectfully be addressed by educating non-autistic people on social communication differences. As Mauldin, a University of Connecticut sociology professor, points out, it’s not high-tech gadgets disabled folks need, and yet it’s the high-tech gadgets that get attention (and, I’m guessing, venture capital funding). Meanwhile, however, disabled folks are struggling to fulfill our very basic equipment, supplies, and other medical care needs.
With the gutting of our healthcare system, disabled people – like most Americans -- are largely at the mercy of Amazon to fulfill our need for medical equipment and supplies that are no longer covered by insurance, giving further power to the role of capitalism in our relationship. Even as I write this blog post, I’m waiting on delivery from Amazon of a CAM (Controlled Ankle Movement) walking boot because my medical provider didn’t have the type I need on hand after a visit with a specialist earlier this week. After half a day of research, I realized it is cheaper, easier, and faster to get this essential medical support from Amazon than it is to convince my insurance company to approve the purchase from a medical supply company, even if I can find the right product. (Having been down this road before, I also have a huge spool of Velcro I previously obtained from Amazon so that when the walking boot doesn’t fit around my large calves, I can “MacGyver” it to make it work.)
Still, despite our necessitated reliance on the corporatization of medical care, Mauldin reminds us that disabled people are doing the thing: engaging in our own world-building by and with disabled people, one roll of Velcro and one subreddit at a time. Even in these seemingly small acts of innovation and independence, we are making the world we want.
Alice Wong, “My ICU Summer: A Photo Essay,” (Disability Visibility Project, August 7 2022).
Photo of an Asian American woman in a power chair. She is wearing a blue shirt with a geometric pattern with orange, black, white, and yellow lines and cubes. She is wearing a mask over her nose attached to a gray tube and bright red lip color. She is smiling at the camera.
A highly regarded and beloved disability activist, Wong was hospitalized earlier this summer and went social-media-silent while those of us who follow her on Twitter were expecting to see her tweeting news and observations as she promoted her new book.
When she surfaced on social media just this month, Wong shared with us through this photo essay her significant, traumatic experiences of being hospitalized for several weeks over the summer, thus allowing us to further our understanding of institutionalized disability.
Wong is the founder of the Disability Visibility Project, an online community that is dedicated to “creating, sharing, and amplifying disability media and culture.” She has also partnered with Andrew Pulrang and Gregg Beratan to bring us #CripTheVote, a nonpartisan online movement that encourages the political participation of disabled people.
One of things that has for years attracted me (and the rest of her army of fans) to Wong is commitment to laying disability bare. Every disabled and/or chronically ill person knows the one way that we are kept silent is through being shamed, and that shaming is intrinsically related to an ableist system that has justified the institutionalization (or “hiding away) of disabled people throughout history. Wong is fearless is pulling the curtain back to not just tell us vaguely what she’s facing, but to boldly tell us and show us how disabled bodies are not supported, even in (especially in?) institutionalized settings.
The seemingly endless bureaucracy and bodily and psychological vulnerability Wong faced during her recent hospitalization paired with her honesty and transparency, can be read as a personal operationalization of Russell’s money-model and Mauldin’s world-building. It’s potentially a tough read (trigger warning for medical photos and authentic descriptions of an individual experience of intensive institutionalized care), but a highly recommended one. If disabled bodies or the physical challenges that disabled and/or chronically ill people face squig you out, maybe it’s time to confront your fears and keep going with this essay until all you feel is love, compassion, and anger on behalf of disabled people in general and Wong in particular.
So, all this - the readings I’ve mentioned and our experiences working with Supervisorial District 2 in Los Angeles and failing to accomplish the inclusion of disabled people in our boards and commissions training cohort - are making me think about a sort of do-over. That's why, in 2023, Cities & People will offer a version of our commissions training program specifically serving disabled and chronically ill people doing transformative policy work at the local level through boards and commissions service, staffing, and inside-outside partnerships.
What does this look like? We’re not exactly sure. As you have figured out by now, we are in an emergent space and still quite open, but we are pretty sure we know this about our imagined program:
It will be a cohort-driven model offered remotely, using inclusive technology and people-centered support for access and engagement.
It will be a little bit training, a little bit networking, a little bit coalition, and a little bit technical assistance, and a little bit whatever it needs to be to build power for disabled folks who want to serve on local boards and commissions and make good policy while they are there.
It will be heavy on transformative policy making and policy movements that may include but also go beyond civic rights of disabled people and which can be seeded or realized at the local level.
The site of application for learning will be boards, commissions, committees, and task forces where issues impacted disabled people are decided (which are most of them).
It will include a race-class lens, inside-outside approach, and (for the sociology nerds out there) will draw on knowledge from political economy and new institutionalism.
A round political button or sticker that reads VOTE JENNI MECHEM DISABILITIES CAUCUS CHAIR. The background is blue and the words are white and orange.
Other than that, we’re still figuring it out. To start baking the idea more fully, I put in a call to my friend Jennifer Mechem, who is currently serving as the ADA/Civil Rights Section Manager for the King County Office of Equity and Social Justice, serves as the Chair of the Disabilities Issues Caucus for Washington State Democrats, and is the Vice Chair of the City of Mercer Island Planning Commission. (No, I don’t know how she manages all this while raising two kids.) Jenni is definitely an expert, and she had lots of great ideas for how we could make such a training inclusive and accessible for folks with a variety of different disabilities. She also had a lot of questions for me I couldn’t answer yet – which is just what I needed from her.
Even though it’s early, we’re hopeful and excited about this potential “do-over.” We’d love to hear your thoughts if you feel like sharing, and we’ll keep you posted as this project progresses.