The Inaccessibility of Food Accessibility

by Julie Nowak

I’ve wanted to get into foraging for a while. It’s a wonderful way to connect with nature, help eliminate edible invasive species, and, of course, provide me with free food to eat. This is very pertinent, as I am disabled and without much of an income. While I’ve known about a couple plants I can forage, I need more hands-on learning to be able to really make foraging a consistent part of my diet. There is a monthly foraging meet-up in Toronto I’ve wanted to check out for almost a year; I haven’t been able to attend because it takes place in the evening, when I am at my lowest energy. Plus my social anxiety often prevents me from attending group events. I finally made it out to the last meet-up, however, which I was very excited about. We learned about edible roots like burdock, dandelion and garlic mustard. I quickly realized how much physical effort was involved, as I spent about fifteen minutes of exhausting, vigorous digging to get a little piece of burdock. It was a tasty treat to eat, but I knew I would not have the physical energy to visit the forest and dig up these roots – or at least not regularly enough to actually make a dent in my food costs.

The food justice movement is supposedly centred on accessibility – specifically food accessibility – with much dialogue around ways for individuals and communities to have increased access to food. While the long-term goal is to create a more equitable and sustainable food system, the short-term goals often focus on ways individuals and communities can more immediately access food – financially, geographically, culturally, etc.

Various approaches and strategies are touted as creating radical change and food access. Activities such as gardening, foraging, dumpster diving, bartering/volunteering in exchange for food, serving free food, cooking from scratch, preserving and bulk buying are highly praised within my activist circles. While I support these approaches, and participate in many myself, I would not put them in the category of “radical change”. There are several reasons for this, but I would like to focus on one in particular: inaccessibility. These quick-fix approaches require a multitude of things that many folks do not have: certain abilities, skills, time, energy, flexibility, space, upfront money, safety, privilege.

For example, I used to dumpster dive and barter frequently before I became disabled. Now these activities are too time and energy-intensive for me to do regularly. Other folks may not have the time or energy because of life circumstances, such as working two full-time jobs, single parenting, or being sick. Cooking, preserving and bulk buying require access to a kitchen and storage space, which many do not have. Gardening and foraging usually involve bending and physical labour, and gardens and forests are often not wheelchair-accessible. Many individuals (myself included) cannot usually accept free prepared food because of dietary restrictions.

I’m not saying we shouldn’t promote and participate in these activities. But we need to stop presenting them as something everyone can do. We are also delusional if we think we are fundamentally changing the food system through these particular efforts. Thus, I propose three ways to reframe the movement. First, we need to focus more heavily on the mid and long-term goals of shifting structures, such as policy change, poverty reduction, improving food sourcing, eliminating food deserts and building local agriculture. Second, we can simultaneously be implementing short-term initiatives, but we should creatively find ways to make them more accessible. Third, we must bring more voices into the food justice movement in order to be more inclusive and properly address inaccessibility.

These three propositions are not easy tasks, so let’s start by breaking down how to make initiatives more accessible. Here are just a few specific ideas of how you can make changes in your organizing to increase accessibility:

  • In community gardens, create wheelchair-accessible pathways and include raised beds so those needing to sit can participate.
  • When serving prepared food, cater to dietary restrictions (i.e. vegan, Halal, gluten-free, nut-free, alcohol-free, etc.) and clearly label ingredients. Consider providing options, such as serving several dishes with differing ingredients or using a buffet/build-your-own meal set-up so individuals can choose their own ingredients.
  • To increase access to cooking, preserving and bulk buying, provide kitchen and storage space. Also consider doing these activities collectively in order to lessen the upfront financial cost.
  • When accepting bartering/volunteering in exchange for food, offer sliding scale options. For example, require fewer (or zero) hours of work from someone with limited ability/capacity/time.
  • Share the bounty from your various endeavours (e.g. gardening, foraging, cooking, preserving) with those who cannot access these activities.
  • Before and during the planning of events and projects, seek out input from a variety of folks in your community to find out what initiatives are desired and how best to implement them in an accessible way. If you don’t have marginalized folks involved in your planning, you need to figure out why you’re not accessible to them.
  • Work creatively to come up with alternative ways of doing something. Inaccessibility and ableism are, in part, the result of a lack of thinking outside of the status quo, so get creative!

Accessibility means different things in different contexts. I’ve touched on just a few aspects of what it can look like in the food justice movement. Remember, though, that accessibility is an ongoing process, not a clear set of laws. If you view these suggestions as annoying rules to follow, you are missing the point. The purpose should be focused on people, not checklists. I admit it can be overwhelming to be faced with requests and recommendations, and I often feel incapable of accommodating everyone. Keep in mind, however, that it doesn’t have to be all-or-nothing. Attempting some (or even one) of these efforts is better than nothing. Of course, we need to strive to do more, be self-critical, and listen to feedback. That being said, don’t let the fear of imperfection prevent you from trying. It’s impossible to achieve one hundred percent accessibility, especially when there are conflicting needs. Yet we can continually work at it, doing our best to structurally make space for this evolving process.


 

Julie Nowak
Julie Nowak is a Toronto-based food justice organizer, educator and writer who focuses on the intersection of food issues, body image and disability. This stems from her personal experience of finding healing from disordered eating through therapeutic farming and involvement in food justice, as well as living as a disabled person after a brain injury. Julie enjoys gardening, vegan seasonal cooking, and walking in parks. You can follow her at www.seasonalbody.org

Sick & Crazy Healer: Destroying Ableism in Healing

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.

2 Canes 2 Crips 6 Legs

An editorial essay on Disability art, healing justice, the hustle of the emerging marginalized artist.

by jes sachse

“We begin by listening. We are People of Colour, Indigenous people, disabled people, and survivors of trauma, many genders, ages and classes of people. We centre 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.”

– Healing & Health Justice Collective Organizing Principles, US Social Forum Detroit 2010

‘I have great immunities! I think it’s because I was born in a hospital,’ I say as you unlock the door of the apartment where your cat eagerly awaits our return.

‘What??’ you laugh in confusion.

 It was not what I meant. I remember fumbling with my words and eventually discarding them and hopping on your bed in playful distraction, hopelessly smitten in my first SDQ (sick and disabled queer) relationship.

I meant I was raised in a hospital. The mothership. Among others of my kind. Paranoid of cops and public transit officials trying to return me. One time wheeltrans slowly followed me for a whole block down Sorauren Avenue and I was like ‘aw shit! It’s happening!’ Turns out they were just looking for an address.

When I moved to Toronto with them big city dreams, it was from a smaller town nearby. Disability art was a new and burgeoning thing to me then, and to the Canadian scene, and I was eager to explore it. I resolved that in order to do that I needed to be around people that could grow me. I needed to know what was out there and I figured Toronto could tell me, with its rumours of other disabled queers.

This cold shoulder of a city has fulfilled its promise and then some. I’ve learned the art hustle of the emerging marginalized artist. Connection across disciplines, politics, and identities. Negotiations between steep rent and steeper poverty transformed into sweet poetry on the social media surface of me. I have made a home and it only took five years to get here.

Here for me is more literally the city’s southwest neighbourhood of Parkdale. I suppose Parkdale is as good a place as any to think about being disabled. Poverty and gentrification coming in from all sides. A place where scrappy meets yuppie in an elbow of streets just before the lake. Years learning the sidewalk dance of dodging the wheelie cart bubbies of a still very Polish Roncesvalles Village cuz no they don’t see your shared crip identities and they will RUN YOU DOWN.

The word disability has a lot of whiteness to contend with. It comes from institutions, which have an inherited colonial history: the medical industrial complex and the academic industrial complex.

I receive a lot of speaking engagements from academic institutions. The academy did not create disability art, but it did brand it. With the brand comes the decree of legitimacy. (I was once asked to give a presentation at a conference at Yale. It didn’t matter that no one paid me; it was Yale! Yaaaaale. Although when trying to board the campus shuttle, right on cue, I was asked if I was looking for the hospital shuttle).

I think I really did believe that a growing interest in disability art meant a growing care for disabled people. But that is a harsh untruth of being a marginalized artist contending with institutionalized power. With the apparent success of my own growing brand, I feel a growing emptiness. Hunger pangs that the McD’s value menu never seems to fill, despite repeated attempts at slinging toonies at the problem.

In a Canadian art context, marginalized identities ask for commodification in order to sustain an emerging artistic practice, while the work produced is often valued for only that: its marginalized quota. In the process of naming oneself over and over as marginalized artist, for funding, for work, for survival, an oppositional isolation is deeply felt. As though that is all one’s work is or is doing: marginalizing.

I can remember my first review in NOW Magazine, during my very first solo show for CONTACT Photography Festival. The images spanned the work of two years of vivid, visceral, queer and erotic digital self-portraiture; early photographic attempts at visually locating myself across my identities and communities. Although positive, the paragraph written about the series amounted to ‘These photographs show sachse just living life!’

Since that time, I have been given several platforms to speak from. And yet I still long for the missing care in my work’s curation. Disability art has in many ways revealed itself to exist to legitimize the very whitewashed disability studies academy. The disability studies academy will engage with disabled artists insofar as they prove of value to scholarship.

This problem is further perpetuated by organizational funding structures like the Ontario Art Council’s project grant specific disability art, which insists on a full disability roster (of almost circus-like variety) in order to be considered. If the entire slew of the projects participants are not disabled, the project does not qualify, which is a forced segregation having nothing to do with craft or medium.

Sadly, disability art is not inherently healing justice, as the spaces it takes up do not centre care or healing, but commodification. I have at times made bad art that speaks to non-disabled feminists before because it meant getting heard from at all; the ache for intimate artistic engagement is real and fuels the work of survival of artists working from the margins.

Thursday, March 24th, 2016. It’s late. I just left Lynx, horizontal on one of black pleather couches in the lobby of OCAD (Ontario College of Art and Design), spoons(1.) low and on the phone with their Vancouver sweetie.


1. Spoon Theory

The word disability has a lot of whiteness to contend with. It comes from institutions, which have an inherited colonial history: the medical industrial complex and the academic industrial complex.

I receive a lot of speaking engagements from academic institutions. The academy did not create disability art, but it did brand it. With the brand comes the decree of legitimacy. (I was once asked to give a presentation at a conference at Yale. It didn’t matter that no one paid me; it was Yale! Yaaaaale. Although when trying to board the campus shuttle, right on cue, I was asked if I was looking for the hospital shuttle).

I think I really did believe that a growing interest in disability art meant a growing care for disabled people. But that is a harsh untruth of being a marginalized artist contending with institutionalized power. With the apparent success of my own growing brand, I feel a growing emptiness. Hunger pangs that the McD’s value menu never seems to fill, despite repeated attempts at slinging toonies at the problem.

In a Canadian art context, marginalized identities ask for commodification in order to sustain an emerging artistic practice, while the work produced is often valued for only that: its marginalized quota. In the process of naming oneself over and over as marginalized artist, for funding, for work, for survival, an oppositional isolation is deeply felt. As though that is all one’s work is or is doing: marginalizing.

I can remember my first review in NOW Magazine, during my very first solo show for CONTACT Photography Festival. The images spanned the work of two years of vivid, visceral, queer and erotic digital self-portraiture; early photographic attempts at visually locating myself across my identities and communities. Although positive, the paragraph written about the series amounted to ‘These photographs show sachse just living life!’

Since that time, I have been given several platforms to speak from. And yet I still long for the missing care in my work’s curation. Disability art has in many ways revealed itself to exist to legitimize the very whitewashed disability studies academy. The disability studies academy will engage with disabled artists insofar as they prove of value to scholarship.

This problem is further perpetuated by organizational funding structures like the Ontario Art Council’s project grant specific disability art, which insists on a full disability roster (of almost circus-like variety) in order to be considered. If the entire slew of the projects participants are not disabled, the project does not qualify, which is a forced segregation having nothing to do with craft or medium.

Sadly, disability art is not inherently healing justice, as the spaces it takes up do not centre care or healing, but commodification. I have at times made bad art that speaks to non-disabled feminists before because it meant getting heard from at all; the ache for intimate artistic engagement is real and fuels the work of survival of artists working from the margins.

Thursday, March 24th, 2016. It’s late. I just left Lynx, horizontal on one of black pleather couches in the lobby of OCAD (Ontario College of Art and Design), spoons2 low and on the phone with their Vancouver sweetie.

We’d gone shopping for art materials. We were both running creative writing workshops around that time and were looking for ways to stretch our modest budgets into the nicest supplies. One hour in a stair filled supply store later and all 2 canes 2 crips 6 legs of us were TIRED. Like, need to sit down somewhere on a ticking clock kind of tired. Initially, I had offered that we go to The Rex after, due to its close crip proximity. I know the area like the back of my claw hand. Filed under: ‘A place to sit and jazz.’

Wheeltrans had messed up and wouldn’t be arriving till 10:30pm. But when we reached the bottom of the ramp Lynx, in their Capricorn rising steadfast charm, stopped and announced ‘Nope.’ Which is how we found ourselves camped in the university’s lobby instead.

‘Do you have a [phone]charger?’ they ask, a chuckling metaphor of our current energy levels.

Surprisingly I did. We find a nearby bench and corner with an outlet.

With hours to go before their ride, we seize the opportunity to hang out. Scatter their new supplies on the well-lit concrete floor for a future social media post to promote #BlackSpoonieSpeak, a workshop by Lynx Sainte-Marie, trying to sculpt the aesthetic jusssst right for Insta.

The hustle.

(It feels like this great secret that when two or more spoonies who centre care with each other come together, access needs don’t actually double but decrease, because bodies inform each other. A deep balance of limits & desired outcomes.) 

At 9:30pm, after twenty different conversations & a relocation to the black pleather couch, Lynx insists that I start home. My body has begun its nightly shut down. I’ve taken to referring to it as ‘kitten hour.’ If I don’t get on transit within kitten hour I will be too sleepy. Falling asleep in public is an unsafe thing in the world.

At the stop, it starts to rain. Streetcars crawl toward me in the great damp distance of Queen Street, their green-lit antennae making a Gatsby out of me. It aches of unfulfilled promise. As access wages, the same ancient stress on my bones so begins again the calculation of steps to home. The wince of what happens when home was other people. The funerals step onto the streetcar with you, sidle into front seat to rest; blue, sideways, a marker of loss incomplete. Pain, but also Love.


jes sachse
jes sachse is a Toronto-based poet, artist & curator obsessed with disability culture. Living across the blurred lines of whiteness, poverty, lifelong disability, genderfluidity and madness, they are currently working on their first illustrated novel, Gutter, which will portray these dilemmas through a multi-modal narrative form, reflecting at once on both a crip navigation of contemporary culture, and the permeation of traumas in spaces of invisibilized violence.

Illusions of Access

blue and grey sun ray

A conversation about ASL, interpretation and inclusion.

With Kylie Brooks, Alex Lu, Sage Nobel facilitated by scout huston

           As someone connected to queer/trans communities, social justice communities, disability justice communities, and Deaf/Hard of Hearing communities, I am often in conversations about “the right ways to hire ASL (American Sign Language), interpreters”. Finding interpreters for events can be a tough process, however building connections with Deaf people/communities is about so much more than booking interpreters! The following conversation is meant to complicate the narrative around access, inclusion and ASL interpretation. The transcript has been edited for the purposes of length, clarity, and flow- with the permission of all involved.

scout: my first question was: what does the idea of “accessibility” mean to you both?

Sage: From my own perspective, genuine inclusivity and accessibility looks like this: Recognizing that each individual may have a different set of access needs and may have various types of accommodations. The best thing is to do, is to simply, ask the participants what their access needs are. Like being Deaf-centric and ASL-centric can be two different things.

For me – Accessibility means the freedom to navigate the world with minimal barriers with the necessary accommodations.

Alex: Well, for myself, the one thing that I’ve been trying to really push back on in my accessibility work is that, I think accessibility has been distorted to mean a checklist of physical accessibility items. Which is to say, when I worked as the accessibility director for BCRAD (British Columbia Rainbow Alliance of the Deaf), every time I had a collaboration, the same question would pop up over and over again – “What is X, Y, and Z that we have to do to be accessible?”

And it’s the mindset that tends to be a bit toxic. You can go through all of the physical motions of having accessibility, but unless you foster a space where people feel like they’re included, it’s not really accessible. I try to look at it more holistically. For instance, culturally, what do people need? Socially, what do we have to do to make people feel like they’re part of a community? How do people feel like they have a voice and say? Do they feel respected in a space?

These are all as important to accessibility as having an interpreter or a ramp.

I think it sometimes goes against conventional ideas of event planning, which is structured and supposed to be very dogmatic in how you follow out a plan.But in practice, the advice I give is – event planning really isn’t like that, it’s super organic. Especially when you’re dealing with the Deaf community, word-of-mouth is really the best way to get people to your event, for instance.

scout: Sage, would you be into talking a bit about what Deaf Spectrum is and why you started it?

Sage: A little bit about Deaf Spectrum – our goal is to bring greater accessibility for Deaf locals in the Greater Toronto Area who use American Sign Language. Right now, we are producing sign language videos that contain event promotion information and grant information. We are planning on expanding our sign language translation video services. In the future, we are planning to host a series of workshops to provide sign language interpreters training to be competent in their field. There’s more to this but I don’t want to give all my ideas away yet.

We also started up tutoring services – and hopefully, some Deaf interpreting services.

Basically, our goal is to have an all Deaf team and to empower each other. One of our goals is to providing training programs in ASL and teach members of the Deaf community usable skills that can increase employment.

Kylie: I work with them re captioning (on hold for now) and booking stuff.

scout: Awesome! So, is there any advice you would give to someone who is trying to make an event more inclusive to Deaf folks?

Sage: To make an event more inclusive – I would suggest hiring interpreters and Deaf interpreters. Providing captioning whenever possible. Scent free spaces. Wheelchair accessible. Gender Neutral bathrooms. And actually reaching out to the Deaf community – produce vlogs and etc. It’s important to distribute the information as much as you can. Get in touch with Deaf folks who have access to networks/community.

Alex: Personally, speaking from experience – sometimes, even at events that have interpreters, I don’t feel totally engaged. A lot of the time, the reason you’ll go to an event is to feel connected to the community and to involve yourself with other people – but I feel like a lot of hearing people aren’t willing to take the leap to bridge a communication gap. It may be experimental, but one thing I would like to see event organizers do is decenter spoken language as the primary mode of communication. Maybe have notepads around, encourage people to approach Deaf people, etc.

Sage: That’s an amazing idea, Alex.

Also, I find myself more comfortable participating in events where I know there will be signers there. It doesn’t matter if they are not that fluent, but it’s nice to have someone to chat with, rather than just wandering around, looking as if I’m lost.

Alex: Yes! This is also why it’s important to engage at a community level, rather than just at an individual level. If there’s a group going, I’d feel a lot more comfortable. But still, it’s important to address how to break down these communication barriers, so it’s not just the Deaf people sitting in a corner all night and talking between ourselves – as enjoyable as that might be still!

Scout: totally- Kylie, you’ve talked about this before- but there is an idea that once you hire interpreters deaf people will feel totally included and welcome, which isn’t always true.

Kylie: Right.

Sage: And – often, I noticed that sometimes when people try to hire interpreters, they don’t ask you who’s your preferred interpreter is. they just refer to the queer & trans friendly list… which is kind of out dated and has heterosexual interpreters. this shouldn’t be the default in queer & trans spaces.

Kylie: Yeah, it’s important to match the right kind of terp to the space. I think it’s important for interpreters getting into this to… well, not just know their stuff but actually take reasonable risks and learn from mistakes.

scout: what are some ways that people can navigate finding an interpreter that is a good fit?

Sage: I think the first step is to ask the deaf people interested in the event, ask them who their preferred interpreters are.

Alex: It’s a little tough because I understand sometimes people don’t have the resources and connections just to directly ask Deaf people. I think that’s one issue actually – that the burden always falls upon Deaf people. I don’t know the schedules of interpreters or all their specialities and everything.I feel like ultimately, people just need to do more research in general. Like, instead of hiring the first interpreter you find, can you try to look up some testimonials? Have them elaborate more about their expertise and experience?Mostly, I think the key issue that people aren’t aware they need specialized interpreters for queer/trans events. I feel like it’s actually a pretty easy thing to verify – look up who’s interpreting for other events, for instance! Ask the interpreters themselves. But it just gets glossed over because people assume all interpreters are the same.

Sage: Like, there are some events where there are poetry and songs. That is more suitable for a Deaf interpreter, I think. Like, performances, in general.

Alex: Definitely. But there also isn’t awareness that Deaf interpreters are a thing. That’s part of the reason why I want to push back against the “accessibility checklist” idea – there’s so many subtle distinctions that it fails to make about the complexities of accessibility. The other thing I want to add in is that – I think we need to be mindful of cultural issues in interpreting too. For instance, poetry or songs have traditionally been handled by hearing interpreters, and I think a lot of Deaf people put up with it because of access – but at the same time, the language, at that level of abstraction, metaphor and expression, really belongs to Deaf people. Sage previously mentioned hiring Deaf interpreters, and I think that’s something people need to do more often. Not only do they do the source material more justice, but it’s just a matter of cultural reappropriation – it has to come from someone inside of the culture.

scout: are there some specific questions that you would recommend asking interpreters to see if there are a good fit?

Alex: I’d say ask them about the previous events they’ve done.But also, just ask them to be honest about their experience, and ask them if they can pass the job to another interpreter if they don’t feel up to it.

Kylie: I’d ask specific questions. hmm, “do you know what pronouns are?”

Sage: maybe, if they have taken some kind of anti-oppression training?

Kylie: Also, I think it’s maybe a good idea to ask the interpreters what they know about disability. Not as in, “do you support disabled people?” Specific questions.

Alex: Yeah, that’s important too. I remember once attending a BLM panel, and there were white interpreters. So I was like, “okay”, because I mean, access, right! But then I started feeling really uncomfortable watching the rage of black women being articulated through white people. That’s another issue here, isn’t it, that we really don’t have a lot of BIPOC interpreters. Again, part of that is the discriminatory nature of the interpreting program. I feel like it’s racially unbalanced too. Actually, that’s a major issue – I remember surveying the Deaf community in respect to HIV healthcare, and part of the reason why STD transmission rates along Deaf- queer men are so high is because they’re embarrassed to bring interpreters to medical appointments due to the demographics – male and queer male interpreters are just so rare. As a result, they don’t get proper medical intervention and counselling. I think interpreter demographics and diversity is at the root of a lot of social problems in the Deaf community

Sage: We need to feel supported as a whole, not just because of our deafness, but as a whole person.

Alex: Sometimes, I feel like people don’t even notice me at an event, lol. Like, I’m in my own bubble with the interpreter, and it’s the hearing people operating in their own world.

Sage: Sometimes, I’m wondering, if they see us chatting with the interpreter, that we’re busy. we’re chatting with the interpreter because we have no one else to talk to!

Alex: Yeah, I feel bad doing that sometimes because I’m like “Oh, do I seem uninviting?” But what am I supposed to do? Stand around and stare at the wall until some hearing person is generous enough to talk to me?

I mean, okay, I would be totally cool with approaching people, but keep in mind I’ve been socialized to literally not know how hearing people start conversations with each other. Like, I don’t have that experience at all. So when I’m in a majority hearing space, I’m suddenly hyperconscious – oh god, what if I violate some kind of hearie norm or something?

Sage: Hearing people have been oppressing us since forever. so we do have some kind of innate fear of dealing with hearing people.There have been some situations where hearing people think that we are so hard to communicate with, that we are not important enough for their energy to try to communicate with us.

Alex: I think it’s less an innate fear for me, as much as it is a bunch of gaps in my knowledge of how hearing society works.

Kylie: Like I’ve had experiences – and others have seen – where I try to ask to clarify but they refuse. Or, people refuse to type on my communication device after being told – for various reasons but still.

Alex: I fake it a lot since I’m oral Deaf, but when it comes down to it, I sometimes have no idea how to behave in a hearing environment. It feels like there’s all of these rules and stuff that I’m not aware of. Because I’ve been missing that context since birth, since no one bothered to include me in things, right? And then the other issue is that sometimes Deaf folks don’t have the language to deal with things right? I’m lucky, but come on, sometimes we have ridiculous standards of language in social justice spaces. It becomes inaccessible. If you don’t know the right words, you can’t fit in.

Kylie: Also, the kind of normative language in the SJ community is my normal way of thinking – my native dialect. So yeah, I think also important to help each other if struggling to explain stuff

Sage: We are soooo excluded from the mainstream community already. I feel that we have a greater need to focus on community building, to gain knowledge about our rights – to be included in more mainstream spaces. It honestly feels like people don’t care.Sometimes, I have those followers on facebook who like my statuses when I post about audism… that’s all they do. they like the status. but they don’t do anything about it. why don’t they learn sign language? Why don’t they invite us to hang out with them one on one?

Alex: Yeah, that’s one other thing. One-on-one interactions are so much easier for Deaf people, in my opinion, if it’s a hearing person. I feel like the one big thing I love about Deaf groups is that is someone goes to the washroom or something, someone else will tend to fill them in the conversation. But I’ve rarely ever seen that happen with a hearing group. It’s more like, they expect you to blend in, rather than ensuring everyone’s on the same page before moving on. I think the other thing is that I just feel so tokenized in these spaces, actually. Like, I’m oral, and a lot of places like to invite me because I can give presentations in formats that hearing people like. And then I’ll be the only Deaf person, and I’ll give like, this presentation on accessibility and it’ll be an annual thing, but then I’ll never ever see Deaf people attending other than me. Even though they’re like “oh, we’re learning! We’re improving!” Where’s the improvement? It feels like they’re using me to pay lip service to accessibility because “hey, I’m the lone Deaf person there! It’s accessible!” When really, it’s not.


Sage Lovell
Sage Lovell is a twenty-something Deaf queer multidisciplinary artist and community educator who likes to work their magic. In their work, Sage reflects about their lived experiences of struggling in an ableist, sexist, capitalist and oppressive society that only welcomes those who fit their standard set of expectations and norms.  Through sharing stories and lived experiences, Sage discovered a beautiful loving supportive community full of folks of all identities.

Kylie Brooks
Kylie Brooks is a Black Deaf Disabled queer trans woman, using she/her pronouns. She is an online social justice activist that focuses on the interconnections of oppression.

Alex Lu
Alex is a graduate student studying computational biology at the University of Toronto. He also serves as a director-at-large for OPIRG-Toronto and for the frank theatre company, where he addresses Deaf/queer issues and advocates for accessibility from an intersectional perspective.

Disability Justice: A working Draft

by Patty Berne, Executive Director of Sins Invalid supported by Stacey Milbern, Aurora Levins Morales and David Langstaff

 In recent years, on websites, on flyers and in informal conversations, I’ve witnessed people add the word “justice” onto virtually everything disability related — from disability services to advocacy to disability studies — while doing nothing to shift either process or end goal, thinking that the word change alone brings that work into alignment with Disability Justice.

Not so. What follows is a working draft definition of Disability Justice, a living document that will grow and change along with our emergent movement. It marks a point of departure rather than a destination. It is an invitation to those of us working on disability issues to continue to support one another to find a language as powerful and expansive as our movement’s vision.

I’d like to start off with a quote from Aurora Levins Morales’ book “Kindling”:

“There is no neutral body from which our bodies deviate. Society has written deep into each strand of tissue of every living person on earth. What it writes into the heart muscles of five star generals is distinct from what it writes in the pancreatic tissue and intestinal tracts of Black single mothers in Detroit, of Mexicana migrants in Fresno, but no body stands outside the consequences of injustice and inequality…What our bodies require in order to thrive, is what the world requires. If there is a map to get there, it can be found in the atlas of our skin and bone and blood, in the tracks of neurotransmitters and antibodies.”

Next Stage in Movement Evolution

Prior to disability rights, if people with disabilities were mistreated, there were no legal repercussions. Most public places weren’t accessible and it was expected disabled people would not participate in society. There was phenomenal and historic work done by disabled people and allies to develop disability rights in the U.S., and it had many successes in advancing a philosophy of independent living and opening possibilities for people with disabilities.  The US Disability Rights Movement established civil rights for people with disabilities. Like other movements, the current Disability Rights Movement includes advocacy organizations, service provision agencies, constituency led centers, membership-based national organizations, as well as cultural and academic spaces.

And, like many movements, it is contextualized within its time and left us with “cliff-hangers”: it is one strategy of many needed to combat ableism; it is single issue identity based; its leadership has historically centered white experiences; its framework leaves out other forms of oppression and the ways in which privilege is leveraged at differing times and for various purposes; it centers people with mobility impairments, marginalizing other forms of impairment. At its core, it centers people who can achieve rights and access through a legal or rights-based framework, which we know is not possible for many disabled people, or appropriate for all situations. The political strategy of the Disability Rights Movement relied on litigation and the establishment of a disability bureaucratic sector at the expense of developing a broad-based popular movement. Popular movements often begin by people developing political consciousness and naming their experiences. Rights-based strategies often address the symptoms of inequity but not the root. The root of disability oppression is ableism and we must work to understand it, combat it, and create alternative practices rooted in justice.

While a concrete and radical move forward toward justice for disabled people, the Disability Rights Movement simultaneously invisibilized the lives of peoples who lived at intersecting junctures of oppression – disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.

In response to this, in 2005, disabled activists of color, originally queer women of color incubated in progressive and radical movements that did not systematically address ableism – namely, myself and  Mia Mingus, soon to be joined by Leroy Moore, Stacey Milbern, Eli Clare and Sebastian Margaret – began discussing a “second wave” of disability rights and ultimately launched a framework we called Disability Justice.

Given the isolation enforced by ableism and classed boundaries, many of us have often found ourselves as agents of change within respective communities and isolated from in-person community with other disabled people of color or queer or gender non-conforming crips. Many of us have found “liberated zones” that celebrate our multiple identities online instead. In many ways, Disability Justice is a developing framework that some call a movement. We are still identifying the “we” – sometimes in fluid spaces and sometimes in each others’ hoped and spoken words, touching each other through the echoes of those we mentor close by.

Given this early historical snapshot, I assert that Disability Justice work is largely done by individuals within their respective settings, with Sins Invalid, the NYC-based Disability Justice Collective, Seattle’s Disability Justice Collective, and Vancouver’s Disability Justice Collective being notable exceptions. Some voices may emphasize a particular component of the framework over another, as can be expected in all early movement moments. However, what has been consistent across Disability Justice – and must remain so – is the leadership of disabled people of color and of queer and gender non-conforming disabled people.

Disability Justice activists, organizers, and cultural workers understand that able-bodied supremacy has been formed in relation to other systems of domination and exploitation. The histories of white supremacy and ableism are inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination. One cannot look at the history of US slavery, the stealing of indigenous lands, and US imperialism without seeing the way that white supremacy leverages ableism to create a subjugated “other” that is deemed less worthy/abled/smart/capable. A single-issue civil rights framework is not enough to comprehend the full extent of ableism and how it operates in society. We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism. Each system benefits from extracting profits and status from the subjugated “other.” 500+ years of violence against black and brown communities includes 500+ years of bodies and minds deemed “dangerous” by being non-normative – again, not simply within able-bodied normativity, but within the violence of heteronormativity, white supremacy, and gender normativity, within which our various bodies and multiple communities have been deemed “deviant,” “unproductive,” and “invalid.”

A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them. We understand that all bodies are caught in these bindings of ability, race, gender, sexuality, class, nation state and imperialism, and that we cannot separate them. These are the positions from which we struggle. We are in a global system that is incompatible with life. There is no way stop a single gear in motion — we must dismantle this machine.

Disability Justice holds a vision born out of collective struggle, drawing upon the legacies of cultural and spiritual resistance within a thousand underground paths, igniting small persistent fires of rebellion in everyday life. Disabled people of the global majority — black and brown people — share common ground confronting and subverting colonial powers in our struggle for life and justice. There has always been resistance to all forms of oppression, as we know through our bones that there have simultaneously been disabled people visioning a world where we flourish, that values and celebrates us in all our myriad beauty.


Rodney Bell performer – Sins Invalid 2008 – #2229

Sins Invalid
Sins Invalid is a disability justice based performance project that celebrates artists with disabilities, centralizing artists of color and LGBTQ and gender-variant artists as communities who have been historically marginalized.  Led by disabled people of color, Sins Invalid’s performance work explores the themes of sexuality, embodiment and the disabled body, developing provocative work where paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all bodies and communities. Creating high-quality artistic work as disabled artists of color and queer/gender non-confoming artists, we use cultural work as a medium for building within and across communities.  In our 10th year, Sins Invalid is seen as a thought leader in Disability Justice and continues to alter the cultural context in which people with disabilities are seen and experienced, nurturing an aesthetic vision in which all bodies are recognized as valuable and beautiful.