by Leah Lakshmi Piepzna-Samarasinha
We center the genius and leadership of disabled and chronically ill
communities, for what we know about surviving and resisting the
medical industrial complex and living with fierce beauty in our sick
and disabled bodies. We say no to the medical industrial complex’s
model of “cure or be useless,” instead working from a place of belief
in the wholeness of disability, interdependence and disabled people
as inherently good as we are.
-from the 2012 Allied Media Conference Healing Justice Practice Space Guiding Principles
I am a chronically ill and crazy intuitive healer and writer, and I cancel a lot. I’ve cancelled a lot my whole sick and disabled life, and I will continue to cancel- because I start puking or have a panic attack or my hips hurt so bad I can’t think- until I am dead.
I cancel on parties and appointments and life, but I also cancel on my clients.
I heal with this brilliant sick and disabled bodymind. This may sound cute, and trust me, it often really is, but it also means constant pleasurable and stressful labour to undo, oh, I don’t know, the entire impact of ableism and the settler colonial medical industrial complex on how we think about what healing is.
In 2015, I had a super canceling summer. I took the spring off of holding my intuitive healing practice because I knew I was going to be on tour with my book Bodymap. And then I fell in love, and I came home, and I moved to Brooklyn to be in the same city as the love that scared the hell out of me sometimes but which I knew was where I wanted to be.
And then I got sick. I got sick the way I do every July. The rhythms of my year mean that I make a big chunk of the money I need to live on in March through May, the season when colleges book writers and performers and workshop teachers for Take Back the Night and Women’s History Month and APIA Heritage and Poetry Month. Then in June, there is Pride, where you can sometimes make some money if you’re queer, and the Allied Media Conference, the queer people of colour lead grassroots media conference where I am usually doing workshops and healing in the practice space.
And this is all one disabled way of life. When I first got disabled I was too sick to work much at first, As I gradually worked my way back to being able to work some of the time for money, I figured out that 9-5 jobs would make me sick for months- I could work and sleep and get pneumonia, that was about it- but because my chronic illness ebbs and flows, labour that required short bursts of energy was more possible. I was mentored by other crip of colour artists who told me that you could work these gigs, and then you could collapse, and you’d maybe have enough to live on during the summer when the money wasn’t there.
So I work my ass off in March thru July, and after it’s all done, I get the flu. But at first, I say, it’s not so bad, it’s just a cold, I’ll take some yin chiao, it’ll last a day. Sometimes that works. But usually, it morphs and twists and turns, from throat to sinuses to phlegm to lungs. Sometimes it turns into pneumonia; often it turns into bronchitis. I have fibromyalgia, and my immune system is compromised, and I know this in every fiber of my being, but I also forget. Because it is, like most disabilities, a normal, everyday part of who I am. Because I use disabled magic to make impairments tolerable- all the magics of deep breathing, breaks, working from bed, prayer and on and on that chronically ill witches use to live our lives. Because I am surrounded, like every sick and disabled person, with constant ableism that tells us our disabilities aren’t real.
But still, I regularly get sick for two weeks from colds roommates swear they’re over, left on one of their dishes. I also use some of my sick and disabled magic to make it shorter. I have mullein and thyme and Buckley’s and codeine cough syrup and wild cherry syrup, I have hot sea salt baths and community ten dollar acupuncture and fluids, I have tons of homemade chicken soup in my freezer.
It gets better on its own time. It always does. And last summer, its own time was a month of canceling and rescheduling on clients. Sometimes more than once. And sometimes, lying in bed feeling bad, like a bad healer, like I was letting folks down. I had that big big whisper I have internalized from a lifetime of able bodied people and bosses being pissed when I was sick “again???” Of federal disability laws and social disability laws never being enough to ensure my access needs- to be sick, slow and flexible- could be held. The whisper: Flake. Faker. Irresponsible. Weak.
The truth is, I am both strong and weak. My immune system is ‘weak’ if weak means vulnerable because it is working so hard to shore up my already stressed system. My mind is “weak” if what you mean is vulnerable and exhausted because it’s working so hard to deal with oppression, surviving severe childhood sexual abuse and being psychically open.
So maybe being disabled and crazy and a survivor makes me a better kind of healer in certain ways than folks who are abled. If you have to be strong as fucking hell to survive being disabled, sick or crazy under ableism, my bodymind is a crip Olympian, like all our bodies. It’s just not a strength the abled world gets. Sitting with reclaiming my disabled femme of colour bodymind means turning inside out the ableist colonial ideas of what healing, what a healer, what strong and good are.
Pro tips/ Pop quiz:
- Those words: Sick. Disabled. Healer. Do you think of them in the same sentence? Do you think a sick, mad, Deaf, neurodivergent and/or or disabled person can heal?
- Do you think we can only be healers if we are as able-bodied and normative looking and acting as possible, hiding our disabilities?
- What do you think “healing” is? Do you think that it means becoming as close to able bodied as possible?
- Do you think it is always sad or terrible to be sick or disabled?
- Do you think that concepts of wellness are just “natural” and have always been about the same? Or do you think they are colonial and ableist? Do you think they shift?
- Do you think everybody wants to be able bodied and neurotypical, and would choose it if they could?
- Does healing justice mean to you that someday, no one will be disabled or sick because there will be no toxic waste and health care for all?
- Do you know that disabled people have always existed, since there were human people?
Are you aware that sick and disabled people have lots of skills, wisdom, our own thoughts about what our bodies want and need? That some of us want cure. Many of us want specific treatments. Many of us are in a daily practice of learning to love our bodyminds as they are. Which is sometimes made difficult by pain and impairment, but which is often made more difficult by the ableism of the world- everything from flights of stairs to no flexible work hours to toxic chemicals to there being only one accepted way of communication. (AKA, the social model of disability.)
For me, being a sick and disabled healer means grappling with all these questions- in myself, in my clients, and in other healers. Bumping up against and confounding the stereotype that a healer is healed, and healing is a static state, and a healer cannot be disabled, sick or crazy. It means bumping up against the image that a healer never calls in sick, a healer never says no, a healer is always there for you. It means sometimes running into woo woo ideas of the “wounded healer” or the “magical cripple” and fighting to carve out a space to be a healer who is a crip and who is indeed damn magic, but not the way those folks mean it.
It means confronting my own internalized ableism that whispershrieks to me that canceling is bad, that I am a “flake” or “unprofessional”- something many healers I know grapple with, disabled and not disabled.
I was talking the other day with another sick and crazy healer. They’d done a certain very intense politicized therapy program, but had a hard time practicing it because they got so overwhelmed by people’s stuff. That they needed to cancel and reschedule often. How could they be a responsible healer?
Here’s the thing: when disabled people get free, everyone gets free. And disabled people have a million things to teach non disabled/ temporarily able bodied healers. This is one of them. Because I believe that able bodied healers, and people who look for healing are also shackled by the idea of the infallible, always on healer. If the only healers, the only healed people, must be “perfect” and always “on”, well, most of us fail at healers.
Instead what if we try on the idea that sick and disabled bodies are normal. That healing needs to fit itself to us, not the other way around. Like that being sick or disabled is not a personal failing or a curse from God. Like that disabled people have existed as a normal part of the continuum of human existence since humans became human. Many precolonial communities had completely neutral terms for people with non normative bodies.
Like that seasoned crips have a million skills about making things accessible, working from bed, being flexible, allowing for lots of time for things to run late because Accessaride didn’t show up or someone had a panic attack. They are not the problem; the ableism of underfunded accessible transit is the problem. Access equipment, from a cane to a CPAP to herbs to pills to a stim toy, is gorgeous technology, not something to be ashamed of. Asking for help is not “weakness” and “independence” is not the only way to be strong. We have been taught that because the white supremacist capitalist colonialist ableist patriarchy has made us live in not-enough and has taught us that vulnerable and need are feminine and weak. But the WSCCAP is bullshit.
Like that stairs suck for just about everybody. (And chemical cleaners. And uncomfortable chairs. And expensiveness. And more.) And even if you can walk up them now, at some point, you won’t. Do you really want elders to stick around in communities of resistance, not dispensary from them? Disability access is one huge way to ensure that that happens.
I am lucky enough to have a disabled healer mentor, Dori Midnight. When I finally called up my psychic mom and confessed to her that I was having a case of the internalized ableism shame, she told me that when I cancelled, I was modeling disability justice and sustainability for my clients. I was showing them that it was absolutely ok for them to admit they were sick or panicked, to not force themselves to go further than their body minds wanted to go. I was actually being the opposite of a flake: I was being a very responsible healer, by healing when I had what I needed to give fully. I was creating a vision of healing that was full of disabled wisdom. It’s something that I want in all healing justice spaces, and for all of us.
LEAH LAKSHMI PIEPZNA-SAMARASINHA
Leah Lakshmi Piepzna-Samarasinha is a queer femme Burgher/Tamil Sri Lankan, Irish and Roma disabled writer, performer and organizer. The Lambda award winning author of Dirty River: A Queer Femme of Color Dreaming Her Way Home, Bodymap, Love Cake, Concensual Genocide and co-editor of The Revolution Starts At Home: Comfronting Intimate Violence in Activist Communities, she is a lead artist with disability justice performance troupe Sins Invalid and is currently nishing her new book of essays, Care Work: Dream- ing Disability Justice Culture and book of poetry, Tonguebreaker.