Organizing while disabled
How to get involved when your health makes it hard to show up in person.
Welcome to Solicited Advice, our weekly column that celebrates the helpfulness in health. Because in a world where strangers at the grocery store love to tell you that a specific brand of magnesium will indeed “cure” what ails you (it probably won’t, so sorry), we’re all about passing on our lived experience in a way that makes your life a little better. Are we experts? Nah, not really. But we’re great listeners who have perfected the art of pillow screaming. Let’s get into it!
In our recent reader survey, there were a few questions about how to get involved in organizing and advocacy while disabled — especially when you can’t be physically present. Let’s talk about it!
Ash: I feel a little stuck on this sometimes because most of what I do is virtual community building, to give people a place to exist. I don’t feel like I do any organizing or advocacy beyond our writing here. I don’t always feel like I can do much because my brain can become really unhealthy when I fully immerse myself in a lot of organizing spaces. So I create community in places where my passions lie, where we can have conversations that are more escapist. But because we are so supportive and connected to each other, we leave space for the deeper conversations too.
Kat: There’s an intense societal pressure for everyone to have an opinion, fight for a cause, or “stand” for something publicly. For me at least, I don’t always feel like I have a lot to add to cultural or political discourse, and I don’t want to add to the noise just because social media shames me into doing so. Because I think there’s a gigantic difference between performative advocacy and organizing. (Especially with limited energy, I want my words and actions to truly mean something. And my gut tells me, if you’re reading this, you do too.)
Skyler: While it’s not uncommon for my therapy sessions to veer into topics such as politics, economics, advocacy work, etc., recent appointments have focused more on clawing out of the defeatist abyss and navigating the all-consuming “why bother” automatic thinking when the magnitude of all the issues at hand and the wrongs that need to be righted feel impossible to face — let alone change. Just the other day, my therapist and I discussed these feelings of helplessness and how to push through them without getting burned out or compromising one’s health and safety.
Jess: I went to my first protest in elementary school, got more involved in high school during the antiwar demonstrations after 9/11, and never really stopped. One of the difficult things for me as my health has gotten more complex has been recognizing that I just can’t do what I used to do anymore, that I can’t participate in the same way. And now with COVID and Friends running rampant, and so many in-person actions not requiring masks and other mitigation and safety measures, that has added more layers for how I show up, and whether that’s in person or not.
While showing up for in-person actions — protests, pressuring representatives at their offices, making noise at city council meetings — tend to be some of the most visible ways to get involved, there are so many things that need to happen behind the scenes to make movements run.
These things are just as necessary and important as showing up in person, and many groups wouldn’t be able to do the work they do without strong volunteer support behind the scenes. People still need to eat, laundry still needs to get done, money still needs to be raised, data still needs to be entered, and someone’s gotta send all of those texts and emails. 😉 There is plenty of work to go around.
Where to start
Follow trusted sources to get your information. Former U.S. Secretary of Labor Robert Reich has a great list of resources in this Substack post he shared on January 23 about ways to take action in our current political landscape. His go-to news sources include:
Heather Cox Richardson’s Letters From an American
And, limit the time you spend consuming information. While it’s important to stay up-to-date on everything going on in our communities, the country, and the world, trying to keep up with the news cycle is exhausting — especially because bombarding the public with constant updates, threats to our rights, and comments degrading our fellow human beings seems to be the political strategy du jour. In the age of doomscrolling and 24/7 on-demand media, it can be hard to set and stick to boundaries for one’s media intake. Some things that work for us include setting timers for how long we will consume, creating a routine to check trusted sources at certain times of day, and recognizing when it’s impacting us so we can re-evaluate and breathe.
Figure out where you want to focus your energy. Common advice is to choose 1-3 issue areas for your advocacy work because feeling overwhelmed and not knowing where to start leads to inaction. By narrowing down the issue areas you are most passionate about and feel equipped to address, you may find it easier to get started and feel less pressure to tackle everything all at once. Here are the three Skyler is focusing on right now:
Global and public health
Climate change and environmental justice
Education
Determine what skills you want to use. While you may have a broad range of skills, it’s important to remember that none of us can do everything for all the things. Maybe you’re an artist, maybe you don’t mind making phone calls or sending texts, maybe you have some IT knowledge you’d like to lend, maybe you’re great with logistics — whatever the skills are that you have, there are groups that could use the help.
Consider how much time and energy you have to give. Only you know how much time and energy you have. If you have 15 minutes a week, then you have 15 minutes a week. You can still make a difference with those 15 minutes.
Take strategic action
Connect with your community. Whether it’s in person, over the phone, by snail mail, or online, there is power in numbers — talk to the people in your day-to-day life. Say hello. Ask how they’re doing. Check in on people. Share information and resources. Send a meal to someone. And remember, mutual aid works. In addition to political effectiveness, it’s empowering to help your neighbor and support — while also being supported by — folks who are working toward a common goal or can relate to your experiences.
Tap into existing resources to help you take action.
The 5 Calls website and app. Calling your representatives is one of the most effective ways you can make your voice (literally) heard when it comes to policy. Plus, you can do it from the comfort of your own home or on the way to the doctor’s office! Don’t know where to begin? 5 Calls has great resource pages with information about who to call, why to call, and what to say when you call.
If you find cold-calling anxiety-provoking or inaccessible (for instance, Kat’s hearing loss makes talking on the phone extremely difficult), you can also send emails to your representatives’ offices. Organizations often have pre-written emails you can send right from their website, such as this one from Partners In Health.
Similarly, you can use ResistBot, a chatbot that turns your texts into faxes, snail mail, or email and sends it straight to your representatives.
Many organizations like MoveOn, Indivisible, and Working Families Party also have regular days of virtual action, and they will send out reminders for who to call or email, why, and when to do it.
Volunteer with an organization or group whose values align with yours. Pretty much all of them need help, and most have limited funding. You can respond to their public asks (like text and phone banking) or ask where they need support behind the scenes. If there’s a particular in-person action you’d like to support, reach out to the organizers and offer to help. Maybe they need someone who can herd cats (errr, arrange rides or meals) or maybe they need some admin support.
Amplify or make content in support of what you care about. You can do this on your own, and you can also lean into existing organizations. Some groups need folks to create or amplify content for them, and some have structures already in place to support creators.
Participate in boycotts as you are able and don’t cross picket lines. There’s some nuance here, especially for disabled folks and people with limited resources. We’re talking more about this in Thursday’s That’s for Therapy column, so stay tuned!
And a bonus option: If you have extra funds available, one of the easiest ways to support the work you care about is to put cold hard cash in the hands of the folks doing that work. Send it to organizers doing work on the ground, send it to the food bank, send it to a local shelter, send it to independent media and creators who are making sure timely, accurate information gets out — whatever it is you care about, there are people working on it who could use that extra support.
Additional reading, watching, listening, etc.:
Disability Visibility Project (and all of Alice Wong’s work!)
And some extra suggestions from BFF Skyler:
How to think about rest as a form of resistance — Interview with Tricia Hersey, founder of The Nap Ministry
Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment — Revolutionary book by sociologist Patricia Hill Collins
How to Survive a Plague — Documentary about ACT UP and TAG; a masterclass in organizing and activism (and one of my favorite films)
A Litany for Survival — Poem by the incomparable Audre Lorde
Twilight: Los Angeles, 1992 — Play, performance art, journalistic investigation — Anna Deavere Smith changed theatre as a whole with this magnificent work of documentary theatre
Disrupted Lives: How People Make Meaning in a Chaotic World — Book by medical anthropologist and disability activist Gay Becker
Custer Died for Your Sins: An Indian Manifesto — One-of-a-kind text by writer, activist, theologian, and historian Vine Deloria, Jr.
Illness as Metaphor and AIDS and Its Metaphors — If you’ve ever heard the quotation, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” and it resonated with you, then you have Susan Sontag to thank
Between the World and Me — Ta-Nehisi Coates’ beautiful and raw autobiography and interrogation of the U.S. framed as a letter to his son
Pathologies of Power: Health, Human Rights, and the New War on the Poor — Book by Paul Farmer, one of the founders of NGO Partners In Health, as well as a doctor and medical anthropologist
Stop Kiss — Powerful play by Diana Son (one of my proudest achievements is having the privilege to be part of a production of this show in college)
Parting thoughts
Kat: Whenever this topic floats into a discussion with others, I often give one piece of advice: Your existence as a unique human automatically means you have something to say, and sometimes the best place to say it is either in a vacuum or in a space where you’re a lone wolf. I know, that sounds really… odd and counterintuitive (I promise I’m not “all lives matter”-ing you). But, in my mind, there are two different types of advocacy: One that is done within a group of people who you identify with, whose beliefs and systems mirror yours; and another type where your existence and opinions are in direct opposition to the rest of the group. The first type serves as a form of validation, in making everyone feel like they’re in community with others who are fighting for the same thing (political or otherwise) — this is so important, especially when you have at least one form of marginalization within your identity. Community is so key to creating change and being heard (especially if there’s an element of personal safety involved). And the second type is of course the pricklier work, and usually where pushback and discomfort exists, but it’s the most important in a lot of ways. A barometer I use for myself: If an opposing view or perspective absolutely shocks me, it’s usually a sign that I’ve been putting myself in too much of an echo chamber.
And sometimes, organizing and advocacy means not saying much (or anything at all), and uplifting the voices of other people who are already doing the work!
Skyler: I also want everyone to remember that we can’t be “on” all the time — even if you have all the spoons in the world, you have to use at least some of them to exist in a world that likes to disregard disabled people and people with chronic physical and mental illnesses (you know, in addition to everyone else who isn’t masculine, white, wealthy, and so on). And that’s on top of the work that goes into taking care of ourselves and our loved ones. Our bodies and our identities are politicized — whether we like it or not — so even just giving yourself space to unapologetically exist and create art, music, performances, science experiments, poetry, friendships, book groups, formulae, the perfect napping nook — all of it is an act of resistance against an ableist status quo.
When it comes down to it, one of the most powerful things we can do is love one another and ourselves.
Got a question you want to ask us? Reply to this email or DM us on Substack — we’ll keep your identity anonymous! P.S. Our really professional lawyers (they wear pantsuits and everything) tell us we can’t dispense any kind of medical advice to the public, but we appreciate you thinking we could even do that in the first place. You’re a real one.
This is just the kind of conversation I love to read/listen to. Love the style of this article and the messaging behind it ❤️
I’d love to add a couple reading recommendations I’ve found inspiring/informative lately!
- Supercommunicators by Charles Duhigg
- Coming Home by Britney Griner
- The Color of Law by Richard Rothstein
- The Highest Law of the Land by Jessica Pishko
- A Well-Trained Wife by Tia Levings
And Phantasma by Kaylie Smith if you need a smutty palette cleanser because advocacy work is hard 🥰
Thank you!!