Bringing the Black Disabled Artist to the Centre

By Kayla Carter

“Mija, you can’t live your life as if you aren’t disabled. 
Slow down take your time. Be gentle.”

A knowing “thank you” is what I offered her. Knowing what she really wanted, I entrusted her with a “gracias Abuelita’. After hanging up I rushed my way to the Queen and Roncesvalles to catch my street car, in the hopes that the diversion around Queen wouldn’t make me late. Sweating and anxious about conducting my first interview, I searched for the room in hopes that my sense of direction would save me from having to talk to anyone. A task that feels colossal in the face of my social anxiety. After finally finding the room, a sense of finding home came over me. 

I knew that the purpose of the interview was to interview the two of the most recent recipients of the Sharon Wolfe Artist in Residence position at Tangled Arts. However, the home that I felt was one that was filled with an urgency, tenderness, and a specificity that is born out of living and surviving lives that are intersecting and tangled, to say the least. After realizing that Gloria Swain (2016 Recipient) and I had met before at York University and receiving the most heart warming hug from mel g.campbell (2015 Recipient), we all sat down and started to catch up. Eventually, the topic of black art in Toronto came up. This is what followed…

mel begins by poetically speaking about their arrival at the themes that are strikingly present in their installation entitled point of origin which uses text and textile. One of the pieces entitled black matter excellence is embroidered with the names of people that have died and people that have fought for black liberation. mel speaks about their process of meditation on where memory is held in their body. The brilliance that comes from mel’s work is their delicious way of breaking down the assumptions that people have about labels and diagnosis’ around disability. Through their installation the understanding that diagnosis and how we experience our bodies are not by universal design is addressed.“A lot of assumptions get made and a lot of understandings get made about my needs and stuff that aren’t actually in line with how I am”. The intersection of time and being disabled are apparent in their work. With a precision and accuracy that begets mel’s understanding and genius of being black and crip, mel speaks about how one of their pieces looks at and honours the beauty of the central nervous system.

“I wish they understood the pain that goes onto the canvas. Ignore the paint. It’s the pain that goes on the canvas!” With stunning detail and brilliant insight Gloria goes on to explain her process of creation and how it is inextricably linked to disability, chronic illness and depression. “Sometimes I don’t even use a brush, I use my hands!”. She speaks to the fact that where, when and how she creates in tied to her understanding of her body. Part of the greatness of Gloria as an artist is her ability to create in ways that honour her experience as a black disabled female artist; as opposed to making a martyr out of herself. Gloria’s installation which is entitled Mad Room which uses text and visual art, speaks directly to intergenerational trauma, mental health within the black community. Gloria’s work engages disability and what it means to be a woman, with a precision and boldness that is born from being a black disabled artist who is not only practiced, but is deeply steeped in her work.

Insomnia by Gloria Swain

 

Insomnia by Gloria Swain,Self-Portrait #1 on Loom(in progress) by mel g. campbell

One of the things that quickly becomes apparent during our talk is that the experience of what it means to not only be a disabled artist but to be a black disabled artist is on the table. The cultural, political and social relevance of what it means to be a black disabled artist is an experience that is fully encompassing. Gloria brilliantly states “my art and my depression is political”. The political, social and experiential space of being a black disabled artist is one

that we soon come to realize is isolating, frustrating and exhausting to say the least. However, it should be stated very blatantly that the source of this isolation and frustration comes from the ableism, poverty, sexism, homophobia, transphobia and anti-black racism of the Toronto art spaces and wider society. The lack of understanding around funding and ODSP, makes it so that disabled artist can get grants, but can keep next to none of the grants. We speak about the expectations of the particular aesthetic of the black artist, leave little room for black disabled artists to create artist that is honest. So much so that aesthetic overshadows art. At one moment in the interview, I mentally checked out, so I could thank the goddess for the honour of being able to hold space with these artists.

Gloria’s and mel’s understanding of the means and mediums of creating as a disabled artist is something that must be more widely understood. In my opinion, these two artists are at the forefront of what is means to not only create, but to do so deliberately and shamelessly. mel and Gloria are facing, surviving , and thriving what most artists would never have to fathom dealing with on a daily basis. Their brilliance is not simply because their work is strikingly honest, deliberate and disarmingly beautiful. Their brilliance as artists comes from the fact that the work, energy, and life that is put into the career of being a black disabled artist is something that requires an infinite amount of brilliance. But above all a belief that the work that you are creating must be created. As someone who has had the honour of bearing witness to their work, I can say that there is a palpable breath, heartbeat and undeniable life in their work. This life is born out of having lived lives that produce work that can only come from magnificent artists such Gloria and mel. Towards the end of the interview, we started talking about the archaic tradition of making art, and how the legitimacy of art is still tied to said archaic tradition. Both of the artists explain that their process of making art is one that works for them because they cater their process to their own bodies. This act is revolutionary in a city like Toronto where struggle is romanticized, but those of us who experience intense struggle are not prioritized. Therefore the act of creating in ways and means that prioritize yourself as a black disabled/crip person is intrinsically and undeniably revolutionary.

After I say goodbye to mel and Gloria, I feel slightly abandoned. A feeling that comes every time I meet an artist or creative that I have a deep and unwavering respect for. A feeling that I know will pass. I rush to catch the approaching streetcar. As I anxiously try to find a seat, I think about the space that was just created. It was a space that I think all of us in the interview wanted, but did not know how much we actually needed.

As the streetcar pulls into Spadina station I think about how the themes that were brought up in the interview will be addressed. Will they remain in the confines of the Tangled Arts office? So to you the reader I ask: after reading this article how will you be prioritizing the experience, voice, and life of the black disabled artist? How will you bring us to the center?


Gloria Swain
Gloria Swain is a visual storyteller and multidisciplinary artist whose work stimulates an understanding of mental illness. She was 2016 Artist in Residence at Tangled Art & Disability and has shown throughout Toronto and is currently completing her Masters at York University. Her practice also includes work as a community arts facilitator and coordinator of art making spaces. She uses art to explore inter-generational trauma and healing.

Kayla Carter
Kayla Carter is a multidisciplinary artist, an educator, a healer and a lover. She is a Toronto based black, queer, disabled, femme who is of Jamaican, Cuban, and Maroon ancestry and believes that her existence is not accidental, but very deliberate.Her work focuses on ancestral and intergenerational trauma, shame, healing, queerness, race, gender, disability justice and what it means to be unabashedly human. As a healer, Kayla’s work focuses on mental health, self-care, self-love ancestral and intergenerational trauma, sustainable forms of healing, and radical reproductive justice/healing.

Walking With Our Demons & Finding Our Way Home

A Crazy Half-Breed Femme’s Reflections on Mental Health & Reclamation

by Gesig Selena Isaac

 I cannot talk about reclamation without talking about its relationship to my mental health. For me, these things are intrinsically connected. I cannot talk about one without talking about the other. I think for a lot of us who are trying to seek out traditions and parts of our culture, and ourselves, this is true. It can be confusing, exhausting and sometimes very lonely. It can also breathe new life into our lungs and push us forward. Many obstacles can come between us and our culture; being estranged from blood family, unstable housing, being low income, mental health. There are also many ways we can seek out Reclamation; elders, community members, schooling (both formal & informal). Whatever way we choose, our e orts are both beautiful and valid. Mental health has very much shaped my path to Reclaiming.

Above: Rose Earrings beaded by the Author 

It has also taken a lot of time to get here; to seek out and find something that works for me. Reclaiming has been, more than anything, a creative outlet. I can tell you that for most of my life I carried around what I can best describe as a dam, weighted on my chest.

Holding back a barrage of water that needed to burst forth and ow. I knew something had to come out. ere was this limitless energy that I couldn’t necessarily name but knew was there. Sometimes in my mind, I visualized this energy as being a wooden chest that was waiting to get busted open.

My depression never was the cute kind. It was never the kind that could be transformed into something productive. I wasn’t making art about it. I wasn’t writing zines about it. I was very much in bed about it. And if not that, going to work and bursting into tears about it. When I think about what I’m going to write next I feel like a fraud. Sometimes, I feel like a fraud. Thirteen months ago I put my Crazy ass on medication. It helped. A lot. It blew up that dam and it busted open that chest. It helped me to see how my anxiety was manifesting in ways that I wasn’t able to realize, or even conceptualize, at the time. I knew it was holding me back but I hadn’t realized fully the extent it was doing so. I have Dreams now. Like, Real Live Fucking Dreams and goals and shit. Thirteen months ago if someone asked me what my life Dreams and Goals were I would have a) broken down and cried and curled up into a ball or b) fucking ran. I am not advocating for medication. I am talking about my own personal experiences. I am lucky. I know very well that this is absolutely not the experiences of most people who enter the world of Psychiatric medicine. I am telling you this because this has been a part of my path to Reclamation. I am invested in and committed to maintaining my Culture and Traditions in ways I am happy and very proud of. I do not know if I would have come to this place hadn’t I made that choice to medicate. When I write this I hear the voices of some herbalists telling me I just need to pull myself up by my “Spiritual Bootstraps” and “Stop feeling sorry for myself ” or “Depression is an ailment of the Spirit.” at’s fucking ableism and fuck that.

In the past year or so I feel like I have come to terms with that fact that mental health is an area in my life where I struggle. For a long time I was in a sort of pseudo denial about it and with that came a lot of anxiety and turmoil as to what my next steps in life might be. Today is my second day of school. I’m enrolled in an “Aboriginal Visual Arts” program at a Cra s College on the East coast. School for a long time was never something I had considered. I floated around for a very long time in cities where I felt out of place and inadequate. Finally, I honoured my Virgo rising self and finally, acknowledged and accepted that routine and a schedule might be one of the many things my crazy heart and brain may need. There were a couple of other schools I was previously interested in and frankly still am. Ultimately, I settled on the one I am in now because it is relevant to who I am as an Indigenous person. It is specific to where I come from geographically. e other schools were either in Northern Alberta or just outside of Yellowknife. rough making this decision a lot of questions came up for me like, What would it mean for a half-breed Mi’gmaq such as myself going to Northern Alberta to learn craft mean? My teachers wouldn’t be Mi’gmaq. My teachers would be Blackfoot and Metis or Dene. Would I have a place there?

I was in Toronto recently and there was an art show opening called ‘Indian Giver.’ It was a beautiful show. Later, I read an interview with one of the artists*, Sage Paul, she said: 

“Across Canada there are 500 different Indigenous nations. There are some commonalities but we’re all pretty different. So, for example, I would never use a headdress in any of my work because I don’t have a cultural connection to it. I have a feeling of protection over it but it’s not part of who I am or my nation… Our language and culture have been taken away from us so, for me, a lot of the artwork is one of the things that’s been constant… Clothing and textile identify who we are, especially because we are an oral culture. There are very specific c visuals that you can place to nations: the types of oral work on a mitten or moccasins, for example, can place us geographically.”

 


1. www.thefader.com/2016/06/08/setsune-fashion-incubator-toronto-indigenous-artists

 

Reading that helped solidify my decision. I understand the need to grab on to a Nation’s culture that isn’t yours when trying to navigate your way back to your own roots. These things can be cyclical. They can lead you back to yourself. But when given a chance to learn from your own people, about your own ways: take it. I want to know more about what it means to be Mi’gmaq. What makes us unique as a Nation. That being said, we all do what we can to get by in this Colonized world. Not everyone has access to the places they are from or money to go to school. Like I said before our efforts are beautiful and our efforts are valid

There were definitely a lot of “sexy” elements to going up North. Hide tanning and welding were both a part of the different curriculums. Having a chance to see the Northern lights was also a huge draw for me. In the end though I knew what the right choice was.

In class I learned of Maliseet scholar Andrea Bear Nicholas. She writes extensively of the ubiquitous dream catcher and Medicine Wheel. She is adamant that neither of these beliefs were ever apart of the Mi’gmaq teachings. She writes:

“To Mi’kmaq, Maliseet, and Passamaquoddy Peoples of the Maritimes:

It has been repeatedly brought to my attention how completely our people have been fooled into believing that the medicine wheel is somehow part of our traditions, especially our spirituality. While I had long had concerns about its origins, what woke me to the hoax was an event that occurred several years ago at a national conference of Aboriginal women scholars. It occurred when I raised the concern and prefaced my remarks with an apology to those whose tradition it might have been. Immediately a chorus went up with virtually everyone in the room saying loudly that it was not their tradition! And these were Aboriginal women scholars from across Canada!”

 


2. http://www.tobiquefirstnation.ca/treaties/MedicineWheelHoax2007.pdf

 

It is not a part of our oral traditions. These are important things for me to know. If I had sought out formal education at any one of the other schools I don’t think I would have heard of this. It is a part of my Reclaiming work to know what is and isn’t ours to pass on, to Reclaim.

The more we talk about our demons the more room is made for the good stuff. The stuff that feeds us. It can be vulnerable and messy at times but in the end I don’t think we have much other choice. Let’s honor our own processes, learn everything we can and share it.


 

Gesig Selena Isac
Gesig is a mixed race, half-breed Forest-Femme demon. She currently resides in wolastoqiyik territory.

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.

Repeat After Me: Care Collectives and the Practice of Community Based Care

an illustration of a woman it reads "repeat after me: i am worthy of care, its ok to ask for help, its okay to receive help, i have valuable care to offer"

by Jennie Duguay

Above: illustration by Heidi Cho

“I do this work in service of community. I tell my story with the knowing that our stories are tools for liberation.1

It took me fifteen years to ask for help,2 sixteen to submit, mind and body, to the amount of care that illness requires and seventeen to believe, in my heart, at least some of the time, that I deserve the care I receive. There is only one reason it took almost half my life to get here: ableism. Defined very simply, ableism is discrimination against people who are disabled, sick and/or chronically ill. A few days before my second nervous breakdown of 2014 a friend held me while I cried in my mostly silent gulping way and told me again and again that I needed help; that I couldn’t do it alone anymore; that they would help me organize a care collective 3 here on unceded Coast Salish territories in Vancouver. They had been talking about it for months: the care collective they were part of in Toronto and the self-described queer femmegimp—the amazing Loree Erickson4—who has, for over fifteen years, been organizing her own volunteer car.

Later we wrote up the first draft of a call-out for volunteers and the next day, alone at home, I lost it; screamed at the wall for an hour, pounded it so hard my fists were bruised. Six days later when I stopped shaking my dear friend had already sent the email, flown home and a dear friend of theirs, a casual acquaintance of mine, showed up at my door. I don’t remember what we talked about, how I behaved, or what she did for me. I know that she is still here now, one of my closest friends and someone I can’t imagine my life as it is now, without. I hit the wall because I didn’t want to need help, because I felt betrayed by my body and I didn’t know how to talk about it. I hit the wall because I was scared and I wanted to be in control. I hit it because I had failed to make myself better, or at the least, to stop myself from getting so sick.

1. Mia Mingus, “On Collaboration: Starting with Each Other,” https://leavingevidence.wordpress.com/2012/08/03/on-collaboration-starting-with-each-other/, (August 3, 2012).  
2. “Help” and “care” are used interchangeably.
3. Care collective: community organized volunteer based care that supports the care needs of an individual.
4. “Loree’s Care Collective,” https://www.youtube.com/watch?v=i3rX8MAHULk, (January 26, 2016).

5. Community based care: covers all forms of community care, such as meal trains, childcare swaps or care collectives.

When I agreed to the care collective I wanted to take the burden off my friends and partner (at the time) who were doing so much for me—not because I believed I deserved the care. I worried that I was burning them out and that they would come to resent me. Limiting how much friends cared for me became the focus of the collective—not getting care for myself. At the time I believed any other choice would result in abandonment. Sometimes it does, sometimes it doesn’t. I don’t remember when it officially became “Jennie’s Community Care Collective” or when I started posting volunteer call-outs on Facebook and hearing from people I didn’t even know or when my calendar began to fill up with “care shifts.” What I remember is shame. All that first year I would tidy the house before people came to clean it. I would try to have snacks for people. To be attentive, engaging, to seem ok—at least emotionally—even though I wasn’t. (Sometimes I still do these things.) It was embarrassing: to be so sick, to need so much help, to not be able to do it on my own. But I also remember moments of relief: when my freezer was full and there were clean sheets on my bed and clothes in my closet. I could finally try to manage symptoms instead of aggravating them. And most of all, I could put time, energy and focus into writing which, for me, is the same as healing.

What came up in my writing was an immense grief and sadness: my life and body had been transformed; I had lost my career and hobbies; many of my relationships were struggling; I was homebound and isolated but what devastated me, I see now, was ableism. It had me believing that my worth was relative to my “ableness” and the “productivity” and (so-called) independence that “health” afforded me—it had me questioning if my life was worth living (I continue to struggle with this at times). I’m not exaggerating when I credit the intervention of community based care5 in the form of the Care Collective with my survival. It functions not only to physically support me, but to strengthen me emotionally and spiritually: to validate my experiences, remind me of my inherent worth, and acknowledge all that I do offer—simply, to love and care for me.

Peggy Munson writes that “imagining a care system based on friendship and activist ideals is hard for me though I may wish for it. A radical revision of care is certainly possible, but only if the survival panic of the disabled is truly, deeply felt.”6

6. Peggy Munson, “Seeking Asylum: On Intimate Partner Violence & Disability,” in The Revolution Starts at Hom, ed. Ching-In Chen, Jai Dulani and Leah Lakshmi Piepzna-Samarasinha (Chico: AK Press, 2011), 119. 

I have felt the survival panic of financial and housing crises, of not being able to shower or cook for myself and I have felt the impacts of my panic on those closest to me—a panic of their own, from which some recover, and some do not; ableism or pain, who knows, too much for them.

The Care Collective allows me to say, that at least in some ways, my story is the best case scenario: a radical revision of care. But it’s not a common one. It’s much more common for people living with disabilities and/or chronic illnesses—in particular those for whom disability intersects with gender, race, class, immigration or refugee status, addiction and mental illness—to experience harrowing survival panic: isolation and poverty, intimate partner violence and other abuses, while also experiencing the physical, emotional and spiritual impacts of ableism, transmisogyny, racism and other forms of oppression. Patty Berne, co-founder of the Disability Justice movement—itself created and led by trans, gender non-conforming, Black, Indigenous and People of Color—asserts that “…able-bodied supremacy has been formed in relation to intersecting systems of domination and exploitation.

We cannot comprehend ableism without grasping its interrelations with hetero-patriarchy, white supremacy, colonialism and capitalism…”7 We make these connections because any work towards building community based care suffers when these interrelations go unrecognized and unaddressed. It has been said many times: doing dishes can be a radical action. Building relationships based on care can be a radical action. Learning (and teaching) how ask, offer and receive care are radical actions. “A radical social re-visioning of care must include the willingness to take radical action,” 8 in other words, community can’t transform us and we can’t transform community if care is not politicized.

Disabled people need care—reliable, safe, transformative care—right now. Participation in care collectives is one way for people to get “radicalized around care and disability,”9 in the sense that spending time with disabled folks “functions as anti-ableism training.”


7. Petty Berne, “Disability Justice- A Working Draft.” pages 4-6 of this issue 

8. Munson, Seeking Asylum: On Intimate Partner Violence & Disability, 133.

9. Loree Erickson quoted by Mary Jean Hande and Muna Mire, ““The Pace we Need to Go”: Creating Care Culture,” Action Speaks Louder, Fall 2013, 10-11, https://issuu.com/opirgtoronto/docs/action_speaks_louder_fall_2013/10
10. Erikson in Hande and Mire, ““The Pace we Need to Go”: Creating Care Culture.”

11. This interpretation of ableism is limited as I’m speaking from a North American context as a white person. Across the world, ableism will manifest in similar, contradictory and different way
s.

10 I’ve certainly found this to be true. Previously abstract concepts like “mutuality” and “interdependence” develop embodied meaning with people as they learn, in a sense, to “see through” the myth of independence, the value system assigned to certain labours over others, the ways ableism defines what is “able”/“normal” and what isn’t—all while chopping veggies or cleaning. People have epiphanies: sick and disabled people are everywhere! Anyone can become sick or disabled! We all need care! Last year I made an agreement with myself: I would accept offers of help that I sensed (and hoped) was offered without pity or obligation or risk of harm and I would do so with grace and, importantly, with pride. I would not apologize for needing help in the first place. I would not apologize for being disabled. This is a radical action, and I fail frequently. 

I fail because ableism11 normalizes feelings of guilt and embarrassment for needing help. It normalizes a belief that asking for help is shameful and weak. That saying no to help is polite. That there is only so much care to go around and that we don’t deserve it.

Repeat after me: I am worthy of care. It’s OK to ask for help. It’s OK to receive help. I have valuable care to offer. Well? How does it feel to say them? You don’t have to believe them but I want you to practice saying them. And you don’t get to excuse yourself by saying “but so-and-so has it so much harder than me,” (which is by the way totally ableist)! I promise you that these are skills that can be learned with practice: asking for help clearly, with respect and thoughtful consideration of our privileges; receiving help with grace and gratitude; offering help that is sincere, help that we can actually follow-up on, help that doesn’t make us sick in turn. If helping me hurts you then it’s not help, it’s harm. One of the great lessons of disability justice that is foundational to a re-visioning of care is that care is as much for you it is for me. We just need different amounts of care and/or for different things and/or more or less often. It changes. It’s a spectrum—don’t judge the spectrum. My point is: whether or not you are sick or disabled, we are all caught up in this mess and we are all responsible for cleaning it up. Getting involved in community based care can mean changing someone’s life, but they will change yours too. Never forget that.

I’d like to end with some questions: How do we build communities that include people who are homebound? What safety and accountability practices are needed when organizing care collectives? What are the options besides a care collective? How do we promote and build care systems that address the interrelationship between ableism, capitalism and white supremacy? How can men and masculine of centre people get more involved in caring? How can caregivers take care of themselves? How is ableism stopping us from taking radical action?

Heidi Cho
Heidi Cho is an emerging multi-disciplinary artist that works in a variety of mediums such as silk-screening, animation and drawing. As a queer youth of colour, art has been an important outlet to share her experiences around queerness, family and mental health. You can check out Heidi’s work at heidichomakesart.bigcartel.com

Jennie Duguay is a queer disabled femme and white settler living on Coast Salish territories in Vancouver, Canada. She has been published in GUTS and is forthcoming in CV2.

A Mobility Movement

An interview with Iahnijah and Queentite of Prosthetics for Foreign Donation Inc. (PFFD Inc.)

Interview by Savannah Clarke

Above image: PFFD inc. logo

I caught up with the mother and child duo, QueenTite and Iahnijah, to hear more about the work that they’re doing to advocate and support children living with various disabilities, as well as to hear more about what parents and community members can do to support children with disabilities in their lives.

PFFD stands for Proximal Femoral Focal Deficiency, a deficiency experienced at birth affecting the hip bone and proximal femur. Iahnijah was born with PFFD and receives prosthetic legs.

Through Iahnijah and QueenTite’s experiences, they were inspired to use the same acronym to start Prosthetics For Foreign Donations Inc., an organization that donates gently used prosthetics and other mobility aids to children in re-developing countries. PFFD Inc. aims to provide equal access to opportunities that contribute to the better well being and the betterment of the community

Savannah: Can you two introduce yourself?

Iahnijah: I am Iahnijah the co- Founder of PFFD – otherwise known as Prosthetics For Foreign Donation Inc. I am an 8 year-old below-knee amputee and in 3rd grade French immersion. I am a Freedom Fighter with Black Lives Matter Toronto, and an avid gamer. I just started my own YouTube page ‘XxATLASBOYxX’, follow me.

Queen: I am QueenTite Opaleke the proud mother of Iahnijah and a Winnipeg-born, west coast grown, Toronto-based multidisciplinary queer artist. I am a Nigerian/Jamaican Hybrid of the African Diaspora with roots laid in activism, the arts, academics, entrepreneurship, advocacy, love and in constant pursuit of more love.

I am a licensed hair artist and owner of NATTY- hair•art•roots, graduate of the Disability Studies Program, ASL 103 certified, and passionately the co-Founding Director of PFFD – Prosthetics For Foreign Donation Inc. When not busy changing the world, you can find me painting, writing, speaking and performing spoken word at various black collectives around the country. As a member of Black Lives Matter Toronto I continue to use my voice to advocate for black love, black liberation, people living with various disabilities, human rights, and promote love. Always love.

Savannah: Tell us more about PFFD inc. and how it got started?

Queen: Prosthetics For Foreign Donation Inc. facilitates mobility by creating access to recycled/repurposed prosthetics and mobility aides and donating them to redeveloping countries in critical need.

On October 2nd, 2008, Iahnijah Opaleke was born with a rare deficiency called PFFD- Proximal femoral focal deficiency (Now renamed CFD – congenital femoral deficiency). This deficiency causes Iahnijah to wear a step-in prosthesis on his right leg. I desired to recycle/donate his very gently used limbs (as he gets a new leg every six to nine months), but could not find a Canadian resource to do so. So Iahnijah and I created the resource to fill that void. Iahnijah is the seed of inspiration planted, which has created roots. These roots are the foundation of PFFD Inc.. Through Iahnijah’s birth and the birth of this charity, we hope to raise amputee awareness about prosthetics, mobility, limb loss, recycling, and major global change.

Upon a destined flight to New York, I met a director of a clinic that revolutionized prosthetics in India. When Iahnijah took his ‘leg’ (limb) off, a man leaned toward me and whispered, “this is destiny my dear”. Over the next three hour flight, he poured knowledge into me about his country’s most marginalized. We, in that moment decided to change the way North America saw mobility. It all started with Iah being comfortable being himself.

Later that fall, we travelled to Jamaica for vacation. This relaxation trip came right before Iahnijah’s sixth surgery (reconstructive hip surgery). We decided to just live, laugh, and enjoy life, as we forgot about the present struggle we were about to face. Iahnijah & I went to a local market in Browns Town. Here we met a man, a double leg amputee gladly using a skateboard for mobility. My son was deeply bothered by this. He offered the man his old prosthetics on the spot. In that moment, PFFD Inc. was born. Iah showed me how to repurpose prosthetics, so every Amputee could be recycling their old limbs. This was the definitive moment in time that shifted our entire lives, in the direction of our destiny.

Savannah: The work you two are doing with PFFD inc. is very essential. How does your work you center justice?

Iahnijah: We bring justice to people without prosthetics, mobility, or help. When we help them, they get justice.

Queen: There is an injustice in living without the privilege of mobility. It’s a blessing most of us take for granted. The gift of mobility comes wrapped with independence, and a renewed sense of dignity. This is the gift that we give.

There is a soulful justice that we are able to renew. Our aim to make a major impact upon the face of Mobility in order to see all individuals treated equally. Those born with missing limbs, or those who lose limbs still have every right to achieve their dreams, or even the ability to dream. This is how we center ourselves in justice for people living with physical disabilities

Savannah: What can other organizations and community members do to center justice in their work?

Iahnijah: People forget to think about others. We need to think about what we can reuse, give away, share, instead of just ourselves.

Queen: It is important to listen to the community. At PFFD we listen to the stories of people struggling in redeveloping countries. Fellow community members need to remember that we are blessed, privileged, and better off than most.

Think about what we can give. And when you have no more to give, give even more.

Savannah: From your experience working within disability justice why do you think services such as these are overlooked?

Queen: There is so much red tape and paperwork involved in sharing used medical/mobility equipment.

We feel this service to the community, and the environment is overlooked because it doesn’t affect them. We have equal access to any services we need – we forget our garbage is another man’s treasure.

The medical field is busy taking the best care of everyone as they can. I feel services like repurposing prosthetics/mobility aides gets overlooked because parents and amputees have never had the option.

It is a possibility that most people don’t know this exists. That is why PFFD Inc. stays advocating and educating the community about this imperative need.

Savannah: What advice do you have for parents of children who have disabilities in supporting and empowering their children to be leaders? What does that look like day-to-day?

Iahnijah: Always be different.

Queen: See your children as whole. Never ever try to make them fit in, or succumb to mediocrity. They are born different. They are born with such a magnificence. It is important to encourage their unique presence and celebrate it. They were chosen, to experience life through another view. This in itself is special, amazing, and miraculous. Life is hard, in general. This struggle builds strength, character and experience. It cannot be avoided. Do not shelter them, as they are born warriors. Stronger than most of us. Sweeter than most deserve. They are gifts. Divine gifts. Appreciate that!

Savannah: Iahnijah, as the co-founder of PFFD inc. where do you see the future of the project?

Iahnijah: I see us taking prosthetics from Winnipeg to all around the world to Africa, giving wheelchairs to kids with no legs, and giving prosthetics to kids with no arms. I see helping people who have no help, all the time

Savannah: Where can our readers go to support PFFD inc?

Queen: You can support PFFD Inc. by:

  • Donating monetarily at any Assiniboine Credit Union
  • Donating to our Gofundme at www.gofundme.com/MobilityMovement
  • Contacting us at prostheticsffd@gmail.com
  • Recycling your used prosthetics/mobility aids (crutches, walkers, wheelchairs, etc.)
  • Like us on FB at FB.com/PFFD Inc and follow us on IG and Snapchat at pffdinc
  • Share our story, and join the mobility movement.

QueenTite
I’m a winnipeg born, west coast grown, toronto based multidisciplinary artist. I AM; a black, proud, queer, Hybrid. My roots are laid in art, activism, education, black liberation, poetry, love, and in constant pursuit of more love. When I’m not busy changing the world, you can find me devoted to my personal projects which include; Co – Founding Prosthetics For Foreign Donation & owning Black Heir.

 Snapchat: @missqueentite and Instagram

Iahnijah
I am the co-Founder of PFFD, otherwise known as Prosthetics For Foreign Donation Inc. I’m an 8 year-old below knee amputee and in 3rd grade French immersion. I am a Freedom Fighter with Black Lives Matter Toronto, and an avid gamer. I just started my own YouTube page ‘XxATLASBOYxX’, follow me

25 Years Before

By Melanie Monceros 

25 years before

I have been medically monitored since conception; the internal ivory of my skeleton inscribed with legacies of languish before my first ventilator-assisted breath. Unexpected and born too early, I arrived during a snowstorm and ever since it has always snowed on my birthday.

I arrived under duress, after distress flooded my mothers veins and panic pumped into my own, joined as we were, at the time. My belly button was the first scar she would leave me with; and, like the others that would follow I’ve learned to grow around and into it.

22 years before

(3 ¾ years-old)

My first introduction to illness came early and the memories are sparse, faint, and corrupted by almost three decades of familial storytelling. Shortly after I was out of the woods of my early-years epidemics, my mother would become lost in a barbed thicket of her own. I don’t know now what it is like to grow up with a mom, but at that age, she was the heat from the sun in the day and the moon lighting up my dreams at night.

The thing about toddlers is that they can be pretty adaptable to changes they can understand. And they can understand a lot if given the chance.

So, when my mother stopped being able to lift me up, I found my own ways into her arms.

When she transitioned into a wheelchair, I learned to relish the joy rides my dad would take us on along the path behind our house. Curled against my mother’s body, I was mesmerized by the spinning wheels and her spilling laughter that fell gently on my tiny shoulders like warm spring rain.

When she stopped coming home, the hospital became a field trip where I got to see my favourite person on the other end.

When she never came home; and all around, the heads attached to the legs towering over me began weeping; and when their tears dried up and took my mother’s name with them – I learned to do the same and let the words ‘mom’ ‘mama’ ‘mommy’ evaporate from my vocabulary.

12 years before (13 years-old)

I had my first ultrasound when I was 13 years-old. It was to investigate the acute back pain I had been struggling with for a while. By that point I had already had cat scans, bone scans, and radioactive dye injected into my pubescent bloodstream. Nothing had yet revealed the source of all of the headaches, foot, and back pain that had become regular company in my young life. That year though, the ache grew and began radiating. I learned the language of pain description. Burning. Throbbing. Tearing. Breath. Taking.

Like the other tests, the ultrasound revealed very little in the way of an answer. I remember waiting, and waiting, and waiting for the results. Pestering my father to see if the doctor’s office had called him at work. By then, my mother had been long dead, but I was secretly processing the new knowledge that what killed her could be hereditary. As I would come to learn, the doctor does not call with the results unless something turns up that warrants their concern and effort. So when I was finally told there was nothing there except a benign cyst and prescribed extra strength Tylenol for the pain, I accepted the explanation and learned to stop talking about it.

4 years before (21 years-old)

Prior to the operation, the surgeon showed me two different sketches of my face in profile. He said I could pick “which face I wanted to wake up with” and I pointed to the one most similar to the one going under the knife.

I awoke to the members of my small family gathered, looking worried, and a bit horrified. My father was unable look at me for long, for a while because the swelling in my face was so severe that my skin had expanded beyond its capacity and begun to tear at the corners.

As I healed and reintegrated into my life I was hit with the startling reality that I was no longer recognizable as myself. The shape of my face was so changed that people I knew well, had worked or gone to school with, did a double take when they saw me if I was able to get their attention in the first place. A funny thing happens when the reflection known as “myself” becomes distorted. I started to spiral and question integral elements of my identity because I could no longer reconcile who I was with who I saw.

The most common refrain from my granny and aunties during my life to that point was how much I looked like my mother. At 15 or 16, when I first cut my hair down to the micro-fro resembling a style my mom had worn, my elder aunt Hazel swore she saw my mom walk into the room before realizing it was me.

Eventually the swelling softened, bruising faded, and my bones fused back together. Yet still, I didn’t look ‘right’. I tried lots of things to heal my distorted vision – haircuts and bod mods and a new “city look”. It didn’t work. And, too late, I realized that I’d worn that face as an echo, a mirror into who or what she could have been, and now it was gone.

1 year before (24 years-old)

Before The Pain
There was cycling across the city in all temperatures and conditions.
There was walking through London’s cobbled and uneven streets.
There were 8-hour hikes through Cretan caves.
There was acrobatic, adventurous, wild-abandoned fucking.

Before The Pain
There were travel plans.
Thumbtacks on wall maps
and Circus dreams.
Pregnant fantasies.
Homesteading blueprints.
Really though
There has never been
a

‘before the pain’.
There was before admitting it.
There was before allowing it.
There was before recognizing it.
There was before feeling it.
There was before feeling anything.
There was before being anything.
But even then there was pain.

melannie monoceros
melannie monoceros is a poet and artist exploring polysensory production through text/ile and performance. They live and work on the traditional land of the Haudenosaunee, Petun, Anishinabe, Mississaugas of New Credit, and Huron Wendat peoples commonly known as Toronto, ON. They have read and performed at the Mayworks Festival Toronto, ON (2015) and at Buddies in Bad Times Theatre Toronto, ON (2016). monoceros was honored with the Sharon Wolfe Artist in Residence (2014) and was a VONA fellow (2014). They have since been awarded grants from the Canada, Ontario, and Toronto Arts Councils in 2016. melannie has presented at York University for the Working toward Disability Justice Symposium and the National Arts Centre for The Summit on Deaf and Disability Arts. They have been a guest lecturer at Concordia University, Ontario College of Art and Design, and Ryerson University. melannie’s writing has appeared in Make/Shift magazine and When Language Runs Dry. Their first solo exhibition, Point of Origin received critical acclaim at the Tangled Art Gallery, Toronto, ON in 2016. Currently melannie is working on a series titled “a n c e s t o r a d i o”

Activism and Self-Care

by Gloria Swain

‘Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.’ ~ Audre Lorde

Conversations surrounding disability justice are very important because it puts people with disabilities at the center of the discussion and looks at inclusivity and support systems for disabled people. The disability justice movement targets the rights of disabled people through empowerment and liberation. This movement challenges abled bodied activists and society to create a more inclusive and social justice-based movement that addresses how issues such as race, class, gender and sexuality impact the experience of being disabled. As a Black feminist artist and social justice activist with a disability, I write this article to focus on the importance of self-care practices when doing this work.

As disabled activists, social justice organizers and community members, life can be exhausting sometimes. Activists can sometimes take on too much and burn out entirely and that’s why self care is an important part of activism, especially for people with disabilities. Self care means taking the time to nurture and support yourself. The impact of my own disability has affected my life in various ways, such as debilitating chronic pain, chronic fatigue and anxiety which can sometimes become isolating. My attempts to appear normal and disguise my pain with humor and my anxieties with unlimited energy represents a problem all activists experience. As I reflect on 2016, I am guilty of ignoring my mental and physical self.

In March, I took part in the fifteen day Black Lives Matter (BLM) Toronto occupation of the Toronto police headquarters at 40 College Street. This was in response to a lack of criminal charges against the police officer who shot and killed Andrew Loku in 2015, a Black man living with mental illness and in response to the refusal of Ontario Special Investigations Unit to release the name of that officer. On the final day, the crowd was preparing to march to Queen’s Park to meet with Premier Wynne to discuss systematic racism within the police department. As chronic pain and anxiety begin to affect my ability to walk, I was given the choice to ride in the back of the truck where I assumed the responsibility of dropping red roses along the route from police headquarters to Queens Park.

With very little time to rest, three weeks later, I was standing in solidarity with Occupy INAC (Indigenous and Northern Affairs Canada) at the Toronto office of Indigenous and Northern Affairs office. This occupation, in response to the inaction of INAC in response to the Attawapiskat youth suicides, lasted for nine days and again I ignored my chronic pain. As an elder, I was well taken care of with hot beverages and adequate warm blankets during the chilled night. During the Pride parade, in July, riding aboard Black Lives Matter – Toronto float, enabled me to take part in the historical halting of the Pride Parade where a list of demands from BLM was presented and agreed to by the Pride organizers.

July continued to be a busy time for me where I was moderator at York University for the Black Futures Now Toronto Conference, a gathering of Black women, femmes & gender nonconforming people who came together for a discussion about the identities we hold close to us as disabled/chronically ill/mad/spoonie Black folks. I ended the month talking as a speaker for the Girl Crush conference where I shared my experience of emotional labour and discussed the intersections of race, gender, disability and art.

The month of September saw me creating and curating a Black Lives Matter photo exhibit in the Crossroads Gallery at York University documenting my time at tent city. I also took part in a performance at the Art Gallery of Ontario (AGO), curated by artist and activist Anique Jordan titled “Mas’ at 94 Chestnut Street”, an envision of what Black history would have looked like in Toronto if it had been documented from the early 1990s. With the year ending, in November, I facilitated a series of workshops, Own Your Sexy, at the Theatre Centre where participants created works that represented the best of their sensual side. My artwork and photographs were part of Ryerson University Social Justice Week where I was also spoke about art and disability activism.

My solo art exhibit, Mad Room, at Tangled Art & Disability, was met with critical acclaim and closed the first week in December after a three-month run. The exhibition on Black women’s mental health had successfully raised awareness, opened conversation, and promoted effective self-care through art. With over fifty art pieces, installations and a filmed artist statement, the exhibit symbolized institutionalization, forced medication, domestic abuse and the stigmas that come with Black depression and disability.

I finally realized that the year’s activities had consumed me physically and mentally and in the end, I found myself alone and completely exhausted. As a disabled activist and sufferer of depression, my activism had taken a toll on my mental health. I now realize how easy it had been for me to forget to take care of myself and I was suffered through the pain.

By mid December, during the Christmas holidays, anxiety and chronic pain had completely exhausted me. I was in dire need of self-care and disappeared inside my tiny one-bedroom apartment for the remainder of the year to rest and regroup mentally.

In the new year, after three weeks of self-care, I was back in full force and successfully launched an online #BellLetsActuallyTalk campaign which successfully became one of the most shared posts on social media. The faces of the Bell Let’s Talk campaign are wealthy white people who are not able to speak for people of colour or people who live in poverty and experience mental health issues. Every year, the Bell Let’s Talk campaign puts up billboards encouraging people to talk about mental health but these billboards are far from inclusive. It’s difficult to talk about mental health when you don’t see yourself represented in these conversations. I am hopeful that Bell will respond by including people of colour in their future mental health campaigns. Back in full protest mode, I took part in the Toronto Water is Life protest at Trump Tower in solidarity with Standing Rock and in February, I marched in the #NoBanOnStolenLand protest that occurred in response to the American travel ban, that saw thousands of people take to the streets, chanting in support of refugees and migrants, and against Islamophobia.

During this hectic and emotional time at the hands of a greedy, racist, sexist, homophobic and Islamophobic Trump government that has clearly made a negative impact in Canada, it is easy to get caught up in moments where you neglect your own needs. As an activist with an unseen disability, I had to learn to take time to rest which helped me to be a better activist and a healthier person. I am fortunate to work with organizers, protesters and allies who are sensitive and accommodating. My advice to other disabled activists and artists is to take care of yourselves and find people/movements that do not discriminate against people with disabilities and who are willing to assist and find ways to include disabled activists in movements.


Gloria Swain
Gloria Swain is a visual storyteller and multidisciplinary artist whose work stimulates an understanding of mental illness. She was 2016 Artist in Residence at Tangled Art & Disability and has shown throughout Toronto and is currently completing her Masters at York University. Her practice also includes work as a community arts facilitator and coordinator of art making spaces. She uses art to explore inter-generational trauma and healing.

Untitled

screenshot of facebook post of chicken nuggets with plum sauce. the text reads "these are the nuggest of community"

By Jes Saches

there was this time this time that I woke up last summer and I couldn’t move my left foot it was sleeping so I waited thinking it would wake up in an hour two hours three hours but it was still asleep I’m disabled but this is new so in order to not trip I marched around my house careful to lift my foot before the step lift before the step

I went to the emergency room that I could walk to I mean march to I marched to st. joes to sit and wait among lots of poor and crazy people like me. receptionist asks what I do during intake I say that I am an artist she replies are you on social assistance I understand what she means yes I am that too

I waited with tender able-bodied white queer that insisted on coming with me who insisted on inviting their tender able-bodied white queer partner who then had to leave to go to yoga said the hospital was triggering and left me with tender able-bodied white queer partner sat for hours nurse asks if my foot has always been like that asks if I tripped asks if injured myself no it hasn’t no I didn’t no

doctor comes in says wow you have scoliosis yes I say I also say all the vernacular of my healing point to foot and name it with words like distal and articulate anatomy. he says it’s probably not a stroke or a tumour but ‘never say never!’ if I want a CT just in case I can have one haha he thinks it’s funny

I go home to worry about my permanence and tender able-bodied white queer partner leaves later texts me after other queer’s yoga that they want me to come over and have snacks and watch buffy that is nice I thought but then later they text me to say no do not come over to watch buffy we are triggered by the hospital

I go again to another hospital this time I must wait for an MRI there is only one MRI spot for emergencies it is at 5am oh no 5am but it is 1pm I am so hungry. I am at trinity western and I realize I am close to mc d’s so I tell facebook that I am very hungry for chicken nuggets and maybe if someone is nearby if they don’t mind I would like ten nugs and bbq sauce but don’t worry it’s not too serious I don’t actually need nugs

so many people respond not the two tender white able-bodied queers but other queers who seem to understand that I am alone so I take a selfie with the nuggets because I think that is nice to not be alone and to not be hungry

I get an MRI at 5am after a nurse spends ten minutes trying to take out my nipple piercing it is stuck because I got it in 2007 and the MRI is a big magnet she apologizes that my nipple is raw I laugh I say you can just cut it off I don’t need it she says ‘but I want to respect your body jewelry’ who is this nurse who taught her to say that I wonder.


jes sachse
jes sachse is at the forefront of a renewal of disability art, justice and culture in Canada. Presently living in Toronto, jes is an artist, writer and performer whose work focuses on disability culture in ways that refuse to reduce or bracket out the messy complexities of difference.  Their work & writing has appeared in NOW Magazine, The Peak, C Magazine, CV2 -The Canadian Journal of Poetry and Critical Writing, Mobilizing Metaphor: Art, Culture and Disability Activism in Canada, and the 40th Anniversary Edition of Our Bodies, Ourselves.

Disability (IN)Justice

A Journey

By Naomi Sayers

 In April 2002, I was in a car accident, while walking or attempting to walk on the highway just in front of my house, located on Garden River First Nation. Garden River First Nation runs along the eastern shores of St. Marys River, on the east side of Sault Ste Marie, Ontario. The highway that runs through my community is known as the Trans-Canada Highway, whiruns through all ten provinces, from the Atlantic Ocean (east coast) to the Pacific Ocean (west coast). I am not the first young person to be hit by a car on the highway. I am one of few who survived. With that survival, however, I have learned a great deal about the troubling ways in which systems and institutions—and the people within those systems and institutions—alleged their accessibility policies as welcoming toward individuals with disabilities and complex histories, individuals like me.

You cannot see my disability. There is nothing that exists outside of my body that signals to others that I sometimes require additional support in ways that are, sometimes, hard to articulate for me. This is not to say that people who do have those items that you can see are any different or less than me, or even you. This is to highlight my own experiences with learning to live with a newly acquired disability following my car accident, the lessons I learned about (in)accessibility, and what disability justice means for me.

Immediately following the car accident, I spent approximately one month in the hospital. I spent a few days in Sault Ste Marie’s General Hospital, in the psychiatric wing, where my mother had to take care of me. I don’t know why I was placed in the psychiatric wing. While in that unit, I was in and out of consciousness and I was having seizures. I was also urinating the bed since I was in and out of consciousness and the hospital refused to move me to specialized care. Finally, the hospital transferred me to the Intensive Care Unit (ICU) and eventually, transferred me to a hospital in Sudbury, which is about three hours east from Sault Ste Marie. For about a week, I was in a coma and I was on a breathing ventilator. I spent about another couple of weeks in a special unit for people recovering after acquiring a brain injury. After being discharged, I recall being told that the accident caused my brain to swell, bleed and that I had “water on the brain.” I also had a skull fracture, but during the transfer from the psychiatric wing to the ICU, the hospital caused another skull fracture after hospital equipment fell on my head. So, during the time I was in the psychiatric wing, I had these internal injuries which the hospital refused to adequately provide proper care, forcing my mom to take care of me instead.

The months following my discharge from the hospital, I experienced double vision, daily headaches, drowsiness, ringing in the ears and oral injuries (i.e., loss of a frontal tooth which required specialized care). Over time, however, I realized how the brain injury would impact my relationships with other people including my family, impact my schooling, and impact my ability to work as a young person. I also have other long term injuries like vision, hearing, concentration and attention issues. The ringing in my ears has not gone away.

I returned to school expecting to graduate in another year from my friends. I soon realized, however, that I had to make new friends. The brain injury changed who I was as a person and I could not do the things that I used to do with my friends—even simple things like going to the movies or to the annual fair and get on some of the rides! Some of these friends eventually stopped inviting me out to do things I used to do with them. Specifically, at school, I had to undergo special testing to determine what kind of supports I needed to be successful in completing my high school graduation. I went through much of this testing before and I eventually learned the majority of the testing dealt with occupational therapy (or ways to find out what a person needs help with at school, at work, and at home following an injury, in my experience, of some sort). Some of the supports I required include breaks after sitting for long periods of time, assistance with taking notes (i.e., recording lectures), and other assistive devices like electronic calendars with alarms to help me remember due dates and appointments.

During my return to school, I also wanted to return to work. While attending high school full-time, I also wanted to work a part-time job. I did not know how difficult working part-time while attending high school full-time would be until I moved away from home.

I moved away from home after realizing how my brain injury would impact my relationships with my family. Sometimes brain injuries cause people to have angry bursts, at the seemingly smallest things. I was one of those people. I was also one of those people that experienced problems with recalling words. I do experience some problems with word recall but I have developed some techniques for myself to overcome this side effect, as well as the angry outbursts. Unfortunately, it was not until our community police removed me from the family home after I fought my family members that I realized my angry outbursts affected my relationship with them.

The police removed me from my home. They told me I could not come back unless the police were present and only to grab clothes. I was only 17 years-old and at the moment, I moved out. I moved into a house with four other young adults. They were in university and I was still in high school. To help pay for rent, I realized I had to work several part-time jobs. I struggled to keep some jobs for longer periods over others. For instance, I was not the best waitress in an Italian restaurant. I could not remember orders and I could not pronounce most of the plates. After spending a year struggling through a few jobs, I eventually turned 18 and discovered the world of escorting.

Escorting is not for everyone. Sometimes, people refer to escorting as sex work. However, sex work is an umbrella term which refers to many different kinds of people who sell or trade sexual labour. Sex work includes web-caming, phone sex, and stripping. I started with escorting.

Being a young Indigenous woman, living and working in northern Ontario, the job possibilities were and continue to be very limiting. At the time, there were options to work in call centres (which require long sitting periods) or retail (which require standing for long periods). Earlier on, I had trouble doing both. For me, escorting provided a new way to achieve my educational goals: To eventually attend post-secondary education (something that seemed very out of reach at the time).

While I left escorting and entered into other forms of sex work (stripping), I did make it to law school and I am currently in my final term, expected to graduate in May 2017. I can confidently say that sex work helped with my journey. But, my journey to this point has not been easy and barriers have been put in front of me, every step of the way.

I learned that when it comes to (in)accessibility policies within systems and institutions (i.e., education), these policies presume that people with disabilities (in this case students) lie about the extent of their disability, and if they are believed, only receive help  when they communicate their needs (i.e.,the policies presume adequate and competent communication skills). On the former, this is a dangerous assumption because it believes only certain bodies and experiences as normal. And, on the latter, it presumes that students will communicate everything they need in one in-take appointment and that those needs will not change throughout their schooling experience. It also presumes the entire process to acquire accommodations through (in)accessibility policies is neither intimidating nor labour-intensive (i.e., requiring a lot of time and energy on top of everything else, like part-time jobs and/or full-time schooling). These processes are nothing but intimidating and labour-intensive.

For each new institution I attended, I had to learn about their (in)accessibility policies and corresponding process for accessing accommodations. I had to do this while living away from home and with very little support from friends and only the support provided by family when I lived closer to home.

When I think back to these educational experiences, I realize that these (in)accessibility policies erase the way in which systems and institutions either aggravate or exacerbate manifest or latent disabilities. For example, the racist and colonial approaches to teaching law in many law schools across Canada sometimes aggravate such disabilities.

During my third year of law school, I almost filed a human rights complaint against my law school but I missed the deadline by one month and I missed the deadline because of the school’s delay in releasing a decision to me, for my review (I challenged a professor’s comments in class that there existed only two kinds of law, which ignored Indigenous law and I was treated horribly by another professor who I sought help with these comments). This incident began in my second year. So, I spent over twelve months advocating on behalf of myself, as well as studying full time courses. However, during the time I experienced this discrimination, my anxiety was further exacerbated and I missed classes and some assignment dates. The process to challenge these comments and treatment by professors, and to receive accommodation also compounded my anxiety.

What I learned from living with a disability is that I am my own best advocate. Nevertheless, this should not be the case. If systems and institutions paid attention to the dangerous assumptions within their (in)accessibility policies, they would understand that people with disabilities do not lie about the extent of their experiences. The process set up by these policies may also be intimidating and people who participate in the processes may not be given the tools, time, and space to communicate their needs. For law school, in particular, I am always taught the importance to always practice self-reflexivity. However, it is important that these systems and institutions also do the same. The burdens placed on people with disabilities through policies and process create inaccessible spaces, as opposed to accessible spaces. Disability justice, for me, is then having the space, time, and tools available for me to communicate my needs in a way that ensures I am heard and my experiences validated. Disability justice is that simple, if only everyone else listened.


Naomi Sayers
Naomi Sayers is a fierce Indigenous feminist, influencer, writer, and educator. She is passionate about working with Indigenous communities or organizations with an Indigenous focus. With her life experiences, Naomi enjoys inspiring others to make the change possible in their world. She is a co-creator of Between The Lines (www.btllaw21.com), a public legal education initiative, and she was named an Every Day Political Citizen by Samara Canada. Naomi is the Kwe behind Kwe Today (www.kwetoday.com). Kwe Today is a blog that is regularly cited around the world. Her work is also used by national and international organizations to influence policy and law reform.