Portrait of Hayley Cranberry Small. Photo taken by Aleck Venegas.
Image description: Hayley rests her head on her arms on her white table in her apartment. She has white skin, dark hair, and the front part of her hair is bleached. She is wearing a dark colored top. On the table next to her is one of her ceramic pieces that is glazed in a chartreuse color and has a black flower sprouting out of the top. The black flower is connected to the green section with handmade silver chainmaille that drapes down.
Activism is often portrayed as very, well, active—think marching in streets or knocking on doors.
But that image leaves out the many people who show up for others without physically showing up. And it reinforces an ableist vision of what “taking action” could actually mean.
That’s why we’ve found Hayley Cranberry Small’s work so inspiring. The chronically ill ceramacist, urban planner, and disability justice advocate runs Lutte Collective (pronounced like “loot,” FYI), an online space that elevates the stories of disabled and chronically ill artists.
Lutte’s spotlighting the barriers that often keep these artists marginalized within the art world.
On Lutte, you’ll find the talent—and the artwork itself—showcased, of course, but it’s also a platform for artists to authentically share the realities of their lives. Through creating a platform for these stories, Lutte’s spotlighting the barriers that often keep these artists marginalized.
And that itself is a form of activism. So is creating art—or just existing in a world that refuses to accommodate your needs.
Rally+Rise spoke with Hayley about rethinking what activism might look like, how to show up as a disability justice advocate, and why rest is a vital part of the revolution.
Portrait of Hayley Cranberry Small with the Lutte logo. Photo taken by Aleck Venegas, logo designed by Hayley in conjunction with Out of Office Design Studio.
Image description: a black and white photo of Hayley sitting on her sofa with her small, black dachshund, Greta, in her lap. Hayley has white skin and brown hair with the front pieces bleached. They both look at the camera with a slight smirk. Hayley is wearing a black turtleneck, black pants, and a black and white crew neck with the Adidas logo on the front. There is a large Monstera plant behind her. To the upper left is the Lutte logo, which is a classic blue outlined hand in the shape of an L. The other letters "utte" are in a fun, curvy, handwritten font.
What’s your definition of “activism”?
In general, society considers people who are out in the streets protesting, tabling, and involved with organizations/mutual aid the only way to be an activist. This is a very ableist perspective on activism. Everyone, depending on their abilities and interests, has a role in the revolution, whether that be contributing monetarily, having a physical presence, conducting research, or contributing in other ways, like through organization, administration, and communication.
I think anyone can be an activist, as long as they feel strongly about a social cause and are willing to volunteer their time towards it.
Do you consider yourself an activist?
“Activist” is not necessarily the word I would use. I’m interested in activism, but I consider myself a disability justice advocate. I’ve always been interested in standing up for causes that I believe in since I was young, but my activism became more formal upon creating Lutte in 2017.
“In general, society considers people who are out in the streets protesting, tabling, and involved with organizations/mutual aid the only way to be an activist. This is a very ableist perspective on activism.”
Tell us more about disability justice advocacy.
Disability justice is different than the disability rights movement. Disability justice centers the care of Black and Indigenous disabled people, disabled people of color, houseless disabled people, and queer and trans disabled people. It’s mainly led by Black/Indigenous/People of Color (BIPoC). I am white, but I try to run Lutte as voiced by the artists and do not have any intention of using my name or the Lutte name where it’s unwelcome or overstepping.
The disability rights movement previously focused on issues like ADA compliance, which is the bare minimum, and still is often not enforced to this day. It also made disability a mainly white issue—which is, obviously, incredibly false.
Disability justice is more radical, acknowledges capitalism as a barrier, and centers multiply marginalized people and the care they need to survive.
Portrait of Jaklin Romine, one of Lutte Collective’s featured artists. Photo taken by Ashaka Matthews.
Image description: Jaklin has brown skin and wears a black tank and a black skirt in her wheelchair. The wheelchair has blue rims. She is surrounded by foam and fabrics hanging from the walls and surrounding her on the floor. They are mostly pastel colors, sea foam green, pink, blue, white, and yellow.
What inspired you to launch Lutte Collective?
There was a point in 2017 where I felt really left out from a lot of communities that had started popping up on the internet. There were a lot of groups where people were sharing parts of their identities, making art about it, and connecting with each other. But I felt like a huge part of my identity was being left out.
For example, I remember there were a lot of Tumblr posts that discussed mental illness and how to be an ally. These posts would circulate and get thousands of notes. But I was like, wow, if I were to write a post about how my disability makes me constantly shit myself, or how my asshole is bleeding, no one would reblog it or really care. You can’t make a cute infographic about shitting yourself.
“I wanted to create a community where sick people could meet other sick people.”
No one wants to talk about the non-glamorous, real, raw, and sometimes disgusting (!!) parts of being disabled. This goes for mental illness too—if you only support people with depression but turn your head or judge when someone has a public trigger and are deemed “crazy,” that’s not activism, that’s just performative allyship.
I wanted to create a community where sick people could meet other sick people. I didn’t even identify as “chronically ill” or “disabled” at that point in my life—I would usually tell people I have an incurable disease if it came up. The only people I had ever met that had the same disability as me was one boy in the hospital when I was 14, and an older distant cousin, Rita, who is no longer alive, may she rest peacefully. Since starting Lutte over three years ago, I have met more people with ulcerative colitis and Crohn’s disease (together these illnesses use the umbrella term IBD) than I can count. And that’s just my disability…. The amount of young disabled artists I’ve met in real life and on the internet truly keeps me going.
How would you describe the work that you do through Lutte Collective?
Lutte Collective is a community, space, and arts collective for disabled and chronically ill artists. I curate a selection of artists to be featured and answer interview questions for our website, luttecollective.com. The featured artist also does a week-long “takeover” of our Instagram page @luttecollective, where they post about their art and their life. The point of the takeovers are to get the artist to share intimate details of their daily routine as a disabled artist. I also urge artists to try and engage with the community as much as possible. There’s a lot of engagement between followers and featured artists via comments but mostly via private messaging.
Most of the work that I personally do for Lutte is curatorial and administrative. I spend a lot of time researching new artists and trying to make connections with them, becoming familiar with their work, and coming up with thoughtful, relevant questions to interview them. The other administrative aspects of the work is just organization, emails, “networking,” etc.
“The point of the takeovers are to get the artist to share intimate details of their daily routine as a disabled artist.”
Lutte has grown in several ways since its birth. The collective first started as Instagram takeovers, but after a couple months I decided I wanted to document artists, their work, and their lives, in a more in-depth, formal, and meaningful way. Lutte became a website, which was a way to showcase disabled artists’ work and give them a spotlight in a way that feels important and real. A lot of Lutte artists have never been featured elsewhere, and I love the idea of giving someone a foot in the door, or a first line on their CV, etc.
Additionally, we used to be specifically for “women and non-binary chronically ill and disabled artists,” but with a lot of feedback from the community, including some of my own personal friends who are trans, we decided to leave gender out of our tagline, and instead the info page on our site explains that we prioritize marginalized genders.
I wanted to also note that Lutte does not claim to be any kind of end-all/be-all. I’m one person, and I have my limitations in what I’m able to do energy-wise and capacity-wise. I do not at all claim to tackle or solve all disability-related issues. I can’t do that alone. I just want to create a community where people can support each other and make friends.
Digital illustration by Beyza Durmuş, one of Lutte Collective’s featured artists.
Image description: an illustration of a person lying in fetal position with a shadow below them in purple and a shadow 'rising' above them in a peach color. There is handwritten text in purple that says 'Ignore me--/ I am in the middle of a/ mental breakdown.'
What role do you believe that art plays in movements?
Art allows our voices to be heard and allows us to share experiences with one another in an abstract way. Art catalogues history.
I also love the quote, “The role of the artist is to make the revolution irresistible.” I believe this is a slightly manipulated quotation pulled from an interview with Toni Cade Bambara: “As a culture worker who belongs to an oppressed people my job is to make revolution irresistible.”
How do you protect yourself from activist burnout?
It’s okay to take breaks. Take a screen break for a week, a month. Disability activism is often sharing information or contributing from your sick-bed, or your couch, or while cuddling with your dog. And it’s okay to turn it off and take a huge nap for the rest of the week.
I love—and live by—the concept that rest is activism, in and of itself. Being non-productive in a capitalist society is radical. I sleep soooo much. It’s my favorite thing. I love @TheNapMinistry, an Instagram that exists on the basis that “rest is a form of resistance and reparations.”
I also live by what Johanna Hedva wrote in her canon essay, “Sick Woman Theory”: “The most anti-capitalist protest is to care for another and to care for yourself.”
“I love—and live by—the concept that rest is activism, in and of itself. Being non-productive in a capitalist society is radical.”
We all have blindspots; what are some ways that you try to be as intersectional in your activism as possible?
I receive submissions and interest in being featured on Lutte from majority white queer disabled artists. Perhaps it’s because I am white. As noted previously, the disability justice movement is a BIPoC-led and centered movement. My aim is not to take any spotlight in any of this, but instead give it to the artists. My role is just building this platform. There are so many artists on Lutte whose lived experiences are not mine. I think this became an important consideration while running Lutte that happened once I became more educated on disability justice.
I try really hard to curate our featured artists to reflect the diversity of people who are disabled and the diversity of disability. At this point, I’m not actively seeking white artists to feature, since so many have applied or shown interest. White artists receive a modest $20 honorarium, and Black, Indigenous, and artists of color receive a $40 honorarium. All of this money is directly out of my own pockets or via anyone who donates to us.
“Hopefully having an interview posted and paid for by a small disability collective fosters confidence to ask for payment in the future from other entities asking for any kind of labor.”
We have two consistent donors: @pookalita.veearings, a friend from high school who makes polymer clay earrings and donates all of her proceeds to Lutte and other organizations, as well as @badsnakeco, another friend from high school who donates a small percentage of their proceeds to us. It’s very sweet and thoughtful. And also interesting, because neither of these women were super-close friends of mine in high school. I very much appreciate their continued donations and interest in Lutte.
Honorariums for featured artists only started this year. I initially didn’t really have a way to pay artists, but I think the Covid pandemic brought to light the amount of disabled people who live in poverty and need mutual aid support, and people started donating to us. Not all of our artists necessarily live in poverty, but even just $20 can help a disabled person pay for delivered groceries. Since I didn’t initially pay artists, when Lutte first got donation money, I went back and paid every artist that had already been featured.
Monetary support for interviews is important, and the offer of a modest honorarium shows value and appreciation of an artists’ time and effort. It also raises the bar—if we are paying our interviewees and contributors, why are media outlets not offering payment? Hopefully having an interview posted and paid for by a small disability collective fosters confidence to ask for payment in the future from other entities asking for any kind of labor.
Digital image by Vivian Auren, one of Lutte Collective’s featured artists.
Image description: a blue background with packets of white prescription pills arranged to spell out "RX".
Who are the activists inspiring you right now?
It’s kind of bittersweet that a lot of disabled people become activists by simply speaking up for themselves and their care needs. So, perhaps some of the people I list below do not consider themselves activists, but they are disabled people I appreciate and who you should follow and send money to.
Patty Lu
@littleom Instagram
@pattylu Venmo
Patty is bedridden and needs help paying for her hyper-specific dietary needs and her skin dressings, which she goes through hundreds of per day.
Walela Nehanda
@itswalela Instagram/Twitter
@Alonzo-Hunt-1 Venmo
Patreon
Walela is an activist and writer/poet, currently undergoing a stem cell transplant. Send them money to help cover medical costs.
Panteha Abareshi
@pantehart Instagram
GoFundMe
Panteha is someone whose art I really love, but I do not know them on a personal level. They make extremely thought-provoking installations and visuals about pain and the human body.
Drew Gurza
@drewgurza Instagram/Twitter
Paypal
Patreon
Drew is a disability awareness consultant and disability sex consultant. He is a much-needed Twitter personality who tells it like it is. For example: “Pro Crip Tip: Please do not touch a disabled person’s mobility device without express permission. Even if doing so with good intent, touching a mobility device is a very personal thing.”
What’s your advice for someone who wants to get more involved in supporting the disabled and chronically ill community?
Read and learn about disability and disability justice. Get involved where it feels right, and be honest with yourself in terms of what you have the energy to do, mental energy included.
Here are some more great resources:
Able Zine @ablezine (IG/Twitter) www.ablezine.com
Sick Magazine @asickmagazine (IG/Twitter) www.sickmagazine.co.uk
Sins Invalid @sinsinvalid (IG/Twitter) www.sinsinvalid.org
Death Panel Podcast @deathpanel_ (IG/Twitter) www.deathpanel.net
Upgrade Accessibility @upgradeaccessibility (IG)
Access Centered Movement @accesscenteredmovement (IG)
Alice Wong / Disability Visibility @disability_visability (IG) www.disabilityvisibilityproject.com
Mia Mingus @mia.mingus (IG) @miamingus (Twitter)
Imani Barbarin, Crutches and Spice @crutches_and_spice (IG) @imani_barbarin (Twitter) www.crutchesandspice.com
Care Work: Dreaming Disability Disability Justice by Leah Lakshmi Piepzna-Samarasinha
Visit luttecollective.com to learn more. To support Lutte Collective, consider making a donation through the website, on Venmo (@hayleycranberry) or PayPal (hsmall22@gmail.com).