Fighting MAID

In the final days before Bill C-7 was passed, people with disabilities came together to share their stories and support a campaign of solidarity to defeat the bill. Bill C-7 proposed an amendment to the Criminal Code to change the eligibility criteria for MAID, Medical Assistance in Dying. The bill had been delayed for over a year after being identified as ableist and harmful by the UN, multiple human rights organizations, and the very people this amendment would target.

The Disability Filibuster came together quickly, facing enormous daily costs, the coordination of many accessibility tools and agents, and the scheduling of many talented, passionate, and creative speakers. It was a multi-day streaming event of sharing, caring, learning, anger, protest, kindness, and hope.

In this conversation with Q Lawrence, one of the organizing team members and host of the Disability Filibuster 2.0 stream, they discuss how this collectively held space was built on a foundation laid down by many before them and by those who continue to defend and celebrate disabled lives and culture, and how its success could shape the future as we all work to support each other in the face of still more adversity, and beyond this devastating bill.

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I met with Q Lawrence online (with auto-captions), but our bodies were situated on stolen Coast Salish territory. I initiated the call from the unceded territories of the Musqueam, Squamish, and Tsleil-Waututh nations and appeared in a blue hoodie and messy grey hair, in front of a plain black curtain. Q participated from unceded Sto:lo land, specifically of the Ts’elxwéyeqw tribe, from their bedroom where they do most of their work and the entirety of the filibuster. They appeared in a crocheted yellow toque which they proudly told me was important because they made it themselves (and it was indeed very cozy looking), and while I could see into their warmly lit space, they shared with me that a window I couldn’t see faced out into their backyard which gave them pleasure and comfort to see the weather and trees even when they couldn’t make it outside. After we checked in with each other to ensure our access needs were met, we shared how affirming it was to meet with folks who cared about each other’s well being. We chatted about how it was somehow easier to advocate for and to demand accessibility for our communities than to ask for it ourselves. We were both familiar with being denied access and with being labelled a nuisance.

Q shared with me that, during the weeks leading up to and during the Disability Filibuster streams, prioritizing accessibility was never questioned. While they and the entire team learned and adapted in real time to make the logistical elements come together, it was never considered that they could ignore accessible access. As necessary as having presenters and streaming equipment, CART and ASL interpretation was a bare minimum.

Q: When Gabrielle (Peters) looped me into the organizing team, one of the first things she said was that Catherine (Frazee) and the Disability Justice Network of Ontario were both doing fundraising. If they could get enough money for these access supports, which are very expensive, then we would do it (the Filibuster) and if we didn’t, then no one would know about it. Only the people on the organizing end of things would even know the filibuster had been a possibility. The only times I’ve ever experienced that kind of understanding that access is absolutely mandatory, is from either disabled and Deaf people. Non-disabled hearing people have never prioritized it in my organizing experience, which is the joy of organizing with crips and disabled people. And that anger and sadness and fear and frustration of having to go and return to non-disabled organizing spaces, it’s so draining.

Kay: That’s the word. Draining. Disheartening. You wonder how it can be so different—after having seen how possible and caring a space and community can be. If I may, I feel like this feeds really really well into the first formal question I had:

Can you tell me more about how the plan for the Disability Filibuster came together? On how information was disseminated, about any tech challenges, and where you found support?

Q: Absolutely. I’m going to start with the beginning phase of planning and organizing before the Zoom bombing because after that we had to do it all over.

During the planning weekend, I was doing outreach and getting other disabled people involved. I was talking to literally all of the disabled people I know and seeing who was available on such short notice. Our initial plan starting on Monday was for this to be a community space, trying this one last big effort to stop C7, or at least delay it.

Our tech plan was to have everyone in the Zoom call with us. That way, there could be interaction and casual conversations, and it would allow for anyone who wasn’t able to commit to a set broadcasting time to still pop in and ask questions or talk about their own experience with medical ableism.

We did not have a tech team. It was Gabrielle (Peters), I call her G, Catherine Frazee, myself, and Kate McWilliams. Kate was doing scheduling and was really on top of all of that. Absolutely amazing organizing. Catherine was doing a lot of the fundraising. It was her idea initially, the whole filibuster, and so she was handling what I call the “official side” of things with G. G was the first one Catherine messaged about the filibuster, and so she was doing media outreach, and trying to get non-disabled people invested in disabled culture. Those were our areas of focus and it was really only four people who were doing the initial work. Steve Estey coordinated the access support, but I was not as in touch with Steve so can’t speak as much to what he was doing but I know he was doing the very important work putting people in touch with his own connections to CART providers and ASL interpreters.

We didn’t experience or anticipate tech challenges. We were just planning on hosting a regular Zoom meeting where everyone could come and talk. And we would go for as long as we could. The plan was to go for 24 hours a day for as long as we had money for access support.

24 hours of access support costs about $10000, and that number hurts so much as a disabled person. I was talking to someone recently about how disabled people should not have to pay for access support, period. No matter what we’re doing, these things should be at the very least subsidized, if not outright covered. If the government actually valued disability culture and valued disabled access, disabled people would never have to pay for these access supports. We would have had professional audio description, which is something we wanted to do, but just could not. That should be free.

From Friday until Monday afternoon, we were sending frantic emails before our initial launch which was planned for Monday (March 8th) at 7 PM Eastern time, and so for me 4 PM Pacific. I was still in chemo; I do chemo once a week and it goes until 5 PM and so I was still sitting in chemo during our launch. I don’t know if you’ve ever used the Zoom mobile app, but it is absolutely terrible, but that’s where I was trying to watch our initial launch.

We had a fantastic friend of mine, jaz, doing an official welcome and opening that was so meaningful to us. jaz is an Indigenous disabled person, and it was fantastic. We were in the first half hour after this welcome and acknowledgement of the land when we were Zoom bombed.

It was International Women’s Day and our first scheduled broadcast, after the opening, was going to be a panel of intergenerational disabled women speaking about their experiences and the exclusion of disabled women from mainstream feminism. A very complex, disabled history and culture conversation…and we didn’t get to do it. And it was pretty horrific. I don’t know if you want me to talk about it in more detail, but I think it’s important people know what happened.

Kay: I’m nodding my head yes right now. It was one of the things I hoped we could talk about, but I wanted to check in first. I agree. Anything you’re willing to share about the Zoom bombing so folks can understand how traumatic, and discouraging something like this is.

Q: Absolutely. In terms of the Zoom bombing, there were two. And they were both very similar with the same kind of violence.

There was Nazi imagery—I’m a converting Jew and had invited my new shul, my synagogue, to be present, and they were there and then were presented with swastikas and whatnot. There was anti-Black racism; videos of people saying the N word, calling other people the N word, things like that. There was very misogynistic audio and video shared as well—very violent. I personally believe what was shared was probably nonconsensual.

It was very, very violent imagery. As soon as we realized what was happening, we shut down that session and tried to restart it. It was about 10–15 minutes later, with a new link, and only emailing it to small groups of people at a time so we could control who had the link, but someone got the link and did a second Zoom bomb. Very similar to the first, so the whole thing was shut down and it was decided we had higher security and safety risks than we had initially realized. We decided to regroup, have a conversation with both the core team of organizers, our broadcasters, and those who were available to do an emergency meeting.

We were trying to get everyone’s input, as well as holding space for the violence everyone was exposed to and acknowledging it was scary and overwhelming. As disabled people, a lot of us have sensory needs, a lot of us are already exposed to so much violence online and in physical world spaces.

A lot of us were angry—we were triggered and upset—we were very angry, and I personally am new to actually experiencing my anger. I have the trauma response of breaking it down into fear and understanding all the layers of it but not actually feeling it. So it was honestly very relieving to be in a space where crip anger was honoured and felt.

We had to do so much reorganizing. We brought on my roommate, who had been sick during the initial organizing and who has a fair amount of experience with webinars, and dealing with emergencies of this kind. We got a third party anonymous donation to continue with the filibuster. That combined with an offer from Inclusion Canada, due to Catherine Frazee’s work, to use their corporate account for a Zoom webinar, allowed us to stream it to YouTube with an increased level of safety, only giving the link to people who were scheduled to broadcast and people we were personally able to vet.

It was pretty disappointing for us to have to go that route. We used Twitter to continue some community interaction because that had always been our initial plan, but it wasn’t a perfect solution because not everyone uses it there, and it’s not accessible for everyone. But we did use the #disabilityfilibuster hashtag towards that end, and a member of Inclusion Canada, Marc Muschler, helped us with the tech side of things.

On Tuesday, we relaunched the filibuster on this new corporate account, streaming to YouTube and were live at 4 PM Pacific/7 PM Eastern. We continued to prioritize access and community, even after being targeted for this filibuster—but we still did it, which I think is really fantastic and shows the power of crip organizing and disabled culture and community.

Something I saw a lot in response to the attack was this was and is not the worst thing going on in our lives right now. We are constantly fighting ableism along with all of our other axes of folks such as disabled people of colour. I mean I’m queer and trans, and with G who is a disabled woman living in poverty—so with all of these things coming together—even our anger—we acknowledged our lives are much more complex than, you know, a violent Zoom bombing. We wanted to continue in that vein of community solidarity.

Kay: Absolutely! I really appreciated when you were talking about holding space and being allowed to experience anger. I think that ties back to what we both talked about at the beginning about how important it is to stand up for our individual needs, that you are complex, that if you don’t have all the energy or experience to do all of the things, that that doesn’t make you any less a part of this or less worthy of love, respect, visibility, anger, and support.

That leads into another question—I was curious, with this solidarity and community support in mind, how else do you think technology can keep us connected and continue this conversation? Especially to support folks who are isolated or further targeted by the passing of this bill?

Q: I think disabled people have always been at the forefront of using technology for connection and community and culture by nature of being so isolated through legislation, and ableism. We have always pushed that edge of what technology is for and I absolutely see it continuing as we fight C7 in a variety of ways.

There’s already plans to keep people connected and we want to continue doing videos—not livestream because of the cost and also people’s ability to engage safely—but doing recorded videos and hosting them on Facebook, Twitter, and the website. We plan on having people engage with those recorded videos and asking questions, and feeling like they’re empowered through knowledge.

And then also there’s another group that was inspired by the filibuster, and they’re currently doing this Bill C7 virtual die-in on Twitter, where they use these pictures of headstones and write various things that people are dying of, for example; ableism, legislation, or specific politicians making these decisions on our behalf without us asking for it.

I personally find it very moving because asynchronous connection is very important to me. I can’t always be present in the moment that I’m asked to be.

As an organizing team, since the start of the filibuster, we’ve been talking about how we can continue holding space for and also building that energy as a community, as a culture, to, in part, educate non-disabled people. Earlier you and I talked a bit about the difference between education and awareness and we all agree there’s been enough awareness. I think marginalized groups are often making the oppressor the priority because we consider it—you know, that turn of phrase “removing the boot from our neck”—that if we can make them understand our experiences enough, maybe they’ll come down here with us instead. And I think that’s a noble goal, but I don’t think it’s always that effective. So our bigger goal, and for me my higher priority is, again, empowering disabled people, empowering Deaf people, empowering Blind people, empowering people with intellectual disabilities, encouraging all of these parts of our community that are often considered disparate to come together, and to understand exactly what the implications of these laws are so that we can fight them personally, in our own lives, making medical decisions for ourselves. All of that to say that absolutely technology is connection. Disability culture has always understood that and moved with that knowledge.

Kay: When I was watching the filibuster 2.0 stream, you, Catherine, and Spring (Hawes) were discussing how access to technology, its cost and even the dissemination of its existence amongst the community is one of the barriers, and can be a reason why MAID looks like a solution when folks don’t even know technology exists. The example Catherine gave was she had learned of a woman who was in favour of medically assisted death because she couldn’t speak with her granddaughter and Catherine said she wanted to take her aside and say “here—with this device, you could talk to your grandchildren.” It is not in the best interest of a capitalist system to put efforts into sharing that these technologies exist so folks can ask for them or request funding. To paraphrase Catherine, who was quoting one of her friends: “human rights for folks with disabilities is the only one that comes with a budget.” So how do we work to inform folks who have been put in, or put themselves, in the queue for consideration for MAID, that there are other options, knowing committees who will approve or disapprove applications are likely not motivated to stay informed about these specific tools and technologies, or to find funds for these technologies?

I know I’m always seeking out captioning technology, that when I learn about a new tool, I immediately send it out to as many people as I can. Even if it’s not ready or universally appreciated—here it is! I want to talk about these technologies, and how can we hack them, or how can they be made better? Do you have any thoughts on this long-winded question?

Q: I do, I do. From a grassroots organizer standpoint, I deeply distrust official routes of dissemination and education, and you know, legislation. It’s all colonial capitalism and I have no faith in it. I never have. My initial reaction to that thought from Catherine, and honestly it’s still my biggest instinct, is we need to do this as disabled people who are outside of institutions and who have access to technology and are already in communities that have a connection. We need to bring that into rural communities where we may have ties, and not in a savior way but in showing and sharing. Asking “Do you want it, do you want to learn it, do you want to explore it?”

That is long term work. That is fundraising and finding ways of accessing equipment. But I think that is the work we need to be doing because C7 has become a long term fight. We have to go through all of these legislative steps to even get it considered to be revoked. We need to be keeping each other alive and cared for in the interim, and beyond C7 being repealed, which is my hope. Because we’re always going to be suffering under this colonial capitalism, so long as “Canada” is a reality we live under.

It also needs to be an international effort because we’re already seeing other countries positing the same kinds of bills. There are conversations happening in the States between politicians trying to move in the same direction. This is going to have international repercussions.

One of the things we realized while building the filibuster and before, with G and Catherine in particular doing so much of the extensive work against C7 before it came down to the wire, talking to politicians, talking to the NDP, they just do not understand this is eugenics. This is going to kill disabled people. Everyone that is contained under C7 is disabled, whether they claim that title or not, and politicians don’t understand. They have no experience or connection to our culture.

We need to do this grassroots work internationally because when we focus solely on domestic organizing, we get even more disconnected and that’s exactly what we’re trying to fight.

Kay: Amazing, thank you, thank you so much for that answer.

I wanted to bring up one of the questions that the BlackFlash guest editor, Carmen Papalia, shared with us this past week. “Do you feel the filibuster could be the start of a new disability culture movement?”

Q: I think it’s a continuation of what’s been building quietly. It feels like the start of something new because it’s reaching public and mainstream knowledge. We have a few media pieces, and we’re all getting so much more connection out of it, but I think it would be a disservice to people who’ve been organizing for so long to call it new. I think it’s just the next phase in disability culture and disability organizing. There are new elements to it, and I think there is a lot more that is being done now because more of us are out of institutions, and more of us have access to the conversation.

I think this is the stage where we need to involve non-disabled comrades—and that’s something really important for this next phase in fighting both C7 and ableist culture as a whole. I really want to call in other non-disabled leftists to be in solidarity with us, in material and emotional ways. I want them to read Care Work: Dreaming Disability Justice by Leah Lakshmi (Piepzna-Samarasinha), and get that ingrained in their systems. I think everything involves Disability Justice, and so the defund organizing going on internationally needs to involve disabled people especially Black and Indigenous disabled people because they’re targeted at high rates. The broader abolition movement needs to center disability culture for the same reason. One of my biggest hopes for this next evolution of disability culture and organizing is non-disabled camaraderie and solidarity. I want them to be invested in our culture, the way we’ve been forced to be invested in non-disabled culture, and I want that to echo internationally as well.

Kay: Yes! Thank you for everything that you said and I agree it’s a disservice to say that this is new, and so right to call it the next phase. I think that this is the best time to talk about the disability filibuster 2.0 and beyond. You’ve touched on recorded video. What else is on the schedule and how are you going to program the forthcoming work?

Q: I think initially, we’re going to start just focusing on outreach. We have a few people that we were already in touch with and we want to share their voices. But I think in terms of long-term organizing, there will likely be a way for people to get in touch with us, and ask about their own broadcast. We’re also going to work to archive and make the original filibuster broadcast accessible. I think there were a lot of fantastic conversations and insights in that filibuster time, and they need to be readily available. There were songs and poetry and comedy and art and political discussion. So that’s another big project that we have to take on—that we want to take on—because it should all be easily accessible. It’s another way of connecting our community and acknowledging that there needs to be more than one way for people to access this information. Not all of us can always sit and watch a longer video; that takes a certain kind of mental energy and access to consistent internet connection. A newsletter is another medium that we want to introduce.

I think we all have ideas that we’re slowly pulling together, but we’re organizing and asking ourselves questions like “Should someone else do this?” or, “How do we want to spread out this labour?” and moving into a long term sustainable organizing model which is much less frantic. It’s still urgent but in a way that we will be able to continue for years and we’ll be able to pass it on to other people if we are no longer able to do it.

Kay: I also think that when you talk about sustainability, it also acknowledges this time, during the pandemic, and I don’t know how much of this you’ve been discussing internally, but when vaccines are actually distributed and just because the pandemic is officially government-declared “over,” doesn’t mean that we will all be able to safely gather. And in many cases, even after proving that many barriers are artificial and manufactured by ableism, that systems are going to try and snap back to before-times, willfully dismissing the needs of disabled bodies. And so having a sustainable practice built into this new phase of the movement makes it stronger in the face of that pressure that’s forthcoming “post-pandemic,” whatever that means.

Q: Yeah, absolutely. I think in all of the organizing that I try to do, as a cripple, sustainability is one of those other things that is often neglected, alongside access, and sustainability is a very important element of access.

I often see folks talk about how leftist organizing is often reactionary by necessity—we have to try to scale that back and put forward actions that we’ll be able to continue, and with confidence that people will actually show up! So often when reactionary movements are happening, we don’t know if someone’s going to be present. For example, so much of the defund organizing holds a constant fear that it’ll just be a bunch of Indigenous people holding an intersection against violently racist police forces. That’s the movement we need to be building and we need to build that for disabled and leftist organizing.

Kay: Does the passing of C7 make the case for dedicating our time, space, and resources to grassroots disability led mutual aid that serves the most impacted by ableism and its intersections with other forms of oppression? Did you have anything else you wanted to share for this interview?

Q: I do want to speak briefly to this mutual aid concept, and then happily move into the open ended side of things. Something that more people need to be in critical conversation about is what we call and define as mutual aid.

Oftentimes, I see people calling what I would name as charity, mutual aid. To me, they’re very different. Mutual aid is not giving resources to another group, it is exchanging skills and resources with each other because we recognize that that’s how we build cross movement coalitions and solidarity, and I think that that’s really important to nail down in leftist organizing. That mutual aid is not giving—it’s sharing and exchanging. Sometimes that means that you are passing someone resources with the knowledge that when you need to get the word out or when you need physical presence at an action, they are going to do their best to somehow be involved in that. And it’s not like a give-one-take-one kind of thing. It’s sharing and spreading the resources out in that equity and justice minded way. That conversation is really important to me and I definitely think that needs to factor into everything moving forward in disability culture as well as in leftist organizing.

Kay: Thank you so much for saying that.

Q: Yeah, absolutely. I rely on mutual aid to survive. When I was no longer homeless, that was how I paid my rent—I had access to free food, so I asked if anyone could please give me money, and not asking for someone to lend me money, I need money with no strings. I will give you food, I have plenty of resources for food, but I need to pay my rent.

So yeah mutual aid is very near and dear to my heart. In terms of closing thoughts, I want to be involved in this for however long it takes, for however long I physically can. I didn’t mention in my visual description because it completely slipped my mind but I have naval oxygen canula. Also not visible but I have a pacemaker, I mentioned that I do chemo. I am both sick and disabled. I am very aware of my limitations and moving forward, I have to be realistic, and ask myself how much I need to do to make sure that other people are involved like G and Catherine and Kate, but also more people so that it’s not just a team of four or five doing all of this work. So this sustainability piece is the most present thing for moving forward. And getting an infrastructure laid out so that it’s not just three or four disabled people in the West and one disabled person over in the East. I think crip culture and the disabled community, it has literally saved my life, countless times. It’s so important to me, and it also informs everything I do.

I’m an artist first and foremost. I want to see artists getting involved in this. G and I were talking about how the next step in fighting C7 is getting artists to share the emotional side that doesn’t always have language or doesn’t have that clear defined article or ethnic language—poetry, music— that’s the next step. Troy (Lindstrom) was involved in the filibuster and does amazing digital drawings, and like borderline political cartoons, and it’s very fun but it also hits hard and that’s what we need. We need people digging into that artistic side and responding to C7, and taking the lead on where we go from here, because that’s the imagination piece. This organizing needs so much imagination to know where we go and I think that that’s what’s most important to us for these next steps; the artistic imagination of removing ableist culture, and renewing disabled culture.

Kay Slater is a multidisciplinary artist, accessibility consultant, and arts worker. As a consultant, they work directly with artists and organizations to build accessibility in at the planning stage, and to incorporate sustainable, grass roots strategies that support evolution in artistic presentation. They employ open source and community-engaged approaches to support ongoing knowledge transfer with creators at all stages of their careers and is passionate about sharing knowledge with the wider arts community. They work professionally with ArtStarts in Schools as their gallery coordinator, and as Exhibitions Manager with grunt gallery in so-called Vancouver. They are on the advisory committee of the Open Access Foundation for Arts & Culture, and are a proud volunteer and work as the social coordinator at Queer ASL. Kay is a queer, colonial settler, and is hard of hearing.

Q goes by they/it.

Q is a white queercrip interdisciplinary artist, disability culture worker, and grassroots death doula living and organizing on the land of the Ts’elxwéyeqw peoples.

It has publications across zines and literary magazines and creates multimedia and interdisciplinary installations, including a collaboration for the Digital Writers’ Festival 2019 with poet Robin Eames called crip intimacy and digital detritus. Q also serves as a disability culture consultant and educator for Pivot Legal Society and other organizations working to better understand and incorporate the tenets of Disability Justice.

This article is published in issue 38.2 of BlackFlash magazine. Get this issue