Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.
I live in Victoria, colonially known as Victoria, on what is the unceded and stolen land of Lekwungen speaking people, and I grew up in Esquimalt, which is the land of the Songhees speaking people. I ended up on disability at a pretty young age, I know I look like I’m like 16 but I’m 32 (laughs), so I ended up on disability when I was about 23 after repetitive gaps from working. I went on quite a few health absences, and I went on medical EI quite a few times, and then I ended up on WCB a few times. . . I guess I kind of got on disability before I could really process my own illnesses, or my own disabilities, so I kind of got on it for necessity, like I just realized there was a point where I just needed to be able to pay rent. Like I just needed to be able to live.
I got on disability before I ever really identified as someone who has a disability, or who is sick, and so I kind of went through that process (of getting on disability benefits) while living in poverty, that was a result from it (the disability). And, I mean that’s been a lot, it’s something that I never really addressed until the last two or three years I guess, and it’s been a lot to work through. I have stage four Endometriosis, and I also have PMDD, Premenstrual Dysphoric Disorder, which was wrongly diagnosed my whole life. They thought it was Bipolar Disorder, then they thought it was Borderline Personality Disorder. I don’t know how many prescriptions I’ve gotten for Lithium in my lifetime, and then just got home and burnt the prescription. Then, January of 2020, I finally got into a gynecologist,I finally got a real diagnosis. And it was really just like 16 years of medical gaslighting, and being an hysterical woman, really.
So no, (not enough money to meet basic needs), basically no. My personal experience with it is that it’s not accessible, which is already a giant bureaucratic barrier for people that have disabilities that have chronic illness, and have mental illness. It’s not accessible. So when I first applied, I applied with my doctor, and I got denied. Then I went to the advocacy program in Victoria called “Together Against Poverty Society,” TAPS, and I got an advocate. And that was the first time, honestly, that anyone’s ever said to me, “What you’re going through is real. What’s happening to you is real. You need help, you need to be able to pay rent. I’m going to help you do this.” And then within one week I got accepted onto it (disability assistance), and I got all the back pay.
So one thing that I find really important to share with others is the importance of having an advocate. And finding an advocate can be super tricky sometimes. A good thing to do is just talk to other people on Disability and ask where the advocacy programs are in your cities. I know that there’s some in Vancouver and I know that there’s some in Victoria, and I’m sure that there are others in BC.
How broken is the system if you need an advocate outside of the system to help you even get into the system? So, it’s a broken system. So I got onto it, and then trying to access like, even what your health coverage covers . . . like, does my health coverage cover this? Can I get dental? Can I do this? Even accessing that information, you almost have to apply (for the coverage) to get the information. So once you’re in the system you have to apply for all these other little systems, and no one really tells you at 23 that you’re going to be on it until you’re 65. Like no one ever tells you that you’re going to be designated a person with disabilities.
And, unfortunately in the eyes of the British Columbia government, we’re not equal at all. We don’t have equal living, we don’t have equal access, we don’t have equal rights in many ways. And I think that the social security nets, and the disability nets, it’s almost like a web of negligence. And people that are on it, like nobody on disability has enough to pay rent, nobody on disability has enough to pay rent and then eat, like it’s surprising when you talk to someone on disability who doesn’t have that one week out of every month where they can’t eat.
When they (the BC government) cut the $300 in half there were so many people in town that didn’t know until they got the checks, because they only announced it in the presser and not everyone has access to the presser. Not everyone has the Internet, or has a computer, or even is living indoors, so a lot of people got their checks and were like, “What?” And there could have been a letter going out, or communication, or some outreach to people without addresses. The technology disparity is really something that I think also adds to the disappearance of people, because they just don’t even have access to the Internet. And we’re all living in the same communities, and people I think just assume that everyone’s got an iPhone, and everyone’s got the Internet, everyone’s got a laptop, and it’s just not the case.
I personally don’t believe that that is a functioning society. I don’t believe that that’s a functioning government, that will force people into poverty, and then say like, “Oh look, we’re putting all this money into mental health care, and here’s a new suicide hotline,” and what about precursors to those situations? Like the effect of poverty on your mental health is astronomical, and the amount of people who are on disability and on social assistance that are unhoused, that are living in parking lots, in tents, in doorways, as a direct result of what the government is doing. To me it’s at the point where, you know 300 To Live is so important, and these are things that we need in order to survive, but I’m almost at the point where I’m frustrated with asking an oppressive system to let me survive, and I almost just want justice at this point.
What do you dream support for people with disabilities could look like?
To me, justice looks like an equality between people that are ill and people that aren’t. And I mean equality in the sense where we have working opportunities, we have housing that is stable and secure and affordable, we have medical care that is accessible and affordable to us. I recently needed to get a mobility aid, and I had to go through mutual aid, like someone in town ended up getting it for me, and again it just highlights like, if the only way we get what we need is from outside of this system, then this system is inherently flawed.
It would be a society shift, it really would, and I’m gonna quote Mia mingus here, but like the politics of interdependence is something that has really empowered me to realize that when we’re looking out for each other, and we’re collectively taking care of each other in a sense where we’re going through systems that don’t cause more harm, and people can access care . . . Like if people deal with suicidal ideation or things like that . . . A lot of the time people don’t reach out for help because of fear of institutionalization, or nonconsensual crisis response, or police, or mental health checks. Or literally getting, like in in the case of Victoria, with mental health checks, the police will literally tear gas you out of your apartment. Or people have died as recently as last Christmas, the previous Christmas, of them using impact munitions and riot control munitions just to get people out of their house on mental health checks. So when there’s a system like that, no one’s getting help, no one’s getting care, no one’s getting support. And I think a way to move forward, where everyone does get that care, would have to move away from institutionalization, to move away from police enforcement, and it would have to move away from the criminalization of just being sick.
I don’t know who said this, but, “An army of sick people can’t be defeated,” and I really do believe that in a sense, that we have so much power. Even if we feel like we don’t have any power because we spend all day vomiting on the toilet, and we live in poverty because our government doesn’t see us as having any value in the capitalist system . . . but I think that if we just say to that, “No. We’re going to organize, we’re going to work together, we’re going to read together, we’re going to talk together, we’re going to dream together, we’re going to come up with ideas to support each other. I think those actions right there can empower us to realize that we’re not what they tell us, we’re not disposable human beings. And one day I think they’ll see it, and they’ll know that it’s been negligence on their half. I mean, they might never know because sometimes people just can’t ever accept these things, but if they don’t know then at least we know.
Do you have thoughts about the role of non disabled or ill people in this movement?
I think it’s a role that everyone can play, to move away from the structures of institutionalization, and move away from the disposability of people that are sick and disabled, and the disappear-ability, if you will, like people being disappeared into institutions, or jails, or homes or whatever it is. A movement takes everyone, and in any little way that people have. I think that a lot of people who are able bodied, like, you know someone who is sick, or you’ve worked with someone who’s sick. And listening is really important, and learning, just reading about ableism, reading about microaggressions of ableism. Reading about why maybe saying to someone you work with, “Oh you’re so lucky you only get to work 4 hours a day,” why that could be harmful.
And it’s almost a duty, to educate yourself. And you can educate yourself in whichever way that means to you. If people are having trouble reading or can’t listen to books on tape like, there’s many different ways that people can learn, and it can be really scary and daunting . . . but I think it needs the approach of a collective movement. For a little while there, people would message me only when I was really really sick, and reach out and see if I was OK. And I think people need to check on people all the time, whether they’re sick or able bodied, and not just in crisis modes. It needs to be like a collective all the time type thing.
Care seems like a recurring theme in what you’re talking about.
Yeah, and and also like the way that we offer care, but also acknowledging that it is hard for people to accept care. A lot of people that are sick and disabled have a lot of medical trauma, or a lot of trauma associated with the people that they thought were there for them. And it creates this tendency in yourself, that it’s hard to accept support, and it’s hard to accept care. I think internalised ableism really grinds people down, and it makes us believe that we’re nothing. It’s almost a radical act to not believe them. Because of the governments that you’re living under, and the forced poverty, and the $375 for rent, and the $25 crisis grant if you’re in crisis, and all these things are adding to us really just accepting that we’re disposable. And I think it’s almost a radical act to say, “I’m not disposable, and I’m going to fight against that. It’s hard to have the energy to do that when you’re also battling all these other things. I always find it really important when I see people doing work when it’s not easy to do the work.
Some days it’s just like OK I’m just gonna submit to this society and I’m just gonna let it all run me over because it’s just the energy of doing it. A lot of people, they don’t want to fight these systems. Like I don’t want to fight against the BC government, I don’t want to do any of these things, I just want them to give me justice. But that doesn’t happen, and that’s not gonna happen, and we do have to fight it. And I think there’s a common misconception a lot of the time too. It’s like direct actions, or sit ins, or occupations or things, like that. A lot of the time, people on the front lines who are literally chaining themselves into these situations, they’re not doing it for fun. They don’t want to be there.
It’s this stand that people, some people have inside, that says, “You have to make the stand. You have to do this” And it’s this inner dialogue almost. No one wants to put themselves in harm’s way to talk about harm. And it’s difficult.
Likes / Loves
Cats, reading, I watch a lot of TV, Law and Order. For colours, I wear black and white a lot but also bright floral vintage dresses in the summer and I use neon colours when I make art. She recommends reading Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha.