Anonymous


Please share what you would like people to know about your experience accessing or relying on the Disability Assistance Benefit.

I seriously considered medically assisted death or suicide as an alternative to dying a slow death from being on PWD and not having my basic needs met. I would live a good quality life (despite my disabilities) if I had health care, food, stable housing, and my other needs met. But I don’t. Because the government and billionaires want us to quietly die off. It’s eugenics. In a country with billionaires, this is unacceptable. I’d like to see these politicians try to live on what they say is a reasonable income.

S

Please share what you would like people to know about your experience accessing or relying on the Disability Assistance Benefit.

 I can’t put into words the degree of stress I experience daily living on so little. I never know how I’m going to be ok – I’m not. I want to have hope but I don’t now. It impacts everything.

What do you dream support for people with disabilities could look like?

That the medical treatment we need would be covered. That we would have rent based on income. That we could have housing that we could afford to live in. That the food bank supplied enough food for people who can’t eat majority of what’s given & even if I could they supply you with 2-3 days of that food – there is a misconception out there that it’s more but not in the city I live in.

Anonymous

Please share what you would like people to know about your experience accessing or relying on the Disability Assistance Benefit.

25 years from hell on disability

What do you dream support for people with disabilities could look like?

$1,800 month. Shelter rate should match ‘affordable’ rate Which is $1,400

Anonymous

Please share what you would like people to know about your experience accessing or relying on the Disability Assistance Benefit.

Thanks to a large sum of money in the bank, I was able to remain safely housed for a while because this money supplemented the difference between the pathetically low disability assistance amount and what it costs to live.

I was on the subsidized housing list for years but, as they boldly proclaim on their website, they don’t guarantee that you will EVER get into subsidized housing. As my savings began to run low, this caused me to live in a state of extreme stress and dread, on top of my medical conditions.

Fortunately, I knew someone with some land who would allow me to live in a tent on his property during the warm season. I told him I would pay him for the use of his land plus the electricity I would need to run my medical equipment etc. Being a nice guy, he said he didn’t want to charge me anything.
Imagine my embarrassment as a Canadian, when I had to explain to him that after insufficient government assistance had pushed me into homelessness, they will then reduce my benefit by $375 if I am “not paying rent” any more.

There are so many more horror stories but I will stop with this one.

Could we demand, please, that the BC government explain how a medically disabled person is supposed to survive on assistance that equals an average one bedroom apartment’s monthly rent?

What do you dream support for people with disabilities could look like?

 I don’t know why building co-ops has become a thing of the past. Many people with disabilities would love to live in a mixed community, Or any kind of community at all.

Kristin

Kristin

Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.

I live in Vancouver. I am neurodivergent. I had an adverse reaction to an antibiotic in 2012 that has disabled me. I have a chronic illness that has affected my nervous system, given me Peripheral Neuropathy, Tendinosis, many connective tissue injuries that don’t heal, the inability to do anything repetitive without injury, food reactions that cause inflammation in my body, and lots of unexplained exhaustion.

I have loved music my whole life, but a hearing injury and subsequent Hyperacusis (pain from sound) took that away in 2017. So now I live in virtual silence, and need to protect my hearing both at home and in the outside world, which has become far too loud. Before the pandemic, my days of going to restaurants, theaters, venues, and visiting friends were long over. At home, my partner makes incredible efforts to not make noise around me and it has been very hard on both of us. 

I have Post Concussion Syndrome, from which I suffer from cognitive and visual issues including light sensitivity, vertigo, dizziness, visual tracking problems, pain and strain from reading or watching screens, or reading anything in books or on paper. If I am visually overwhelmed, my cognitive ability to make decisions, concentrate, follow any train of thought, and even tolerate noise greatly diminishes.

My hands and feet are fragile from the antibiotics and limited to what they can do, especially anything repetitive. My mobility and ability to stand and walk is limited. For instance, I have trouble standing long enough to cook a meal, and my wrists aren’t strong enough to handle pots and pans, and the noise is excruciatingly loud when spoons and pans are set on counters and in drawers or when dishes clink together. I am constantly exhausted, and usually in bed. Overexerting myself one day can turn into days or weeks of recovery from pain and exhaustion. My daily, short walk outside is the highlight of my days, finding and naming the neighbourhood cats with my partner and bribing them with treats. 

I used to play bass in a band. I played keyboards, guitar, drums, pedal steel, and any instrument I could get my hands on. I have a record collection full of Prince, Joni Mitchell, Stevie Wonder and so many other artists and bands. My life used to revolve around music, and I’ve found it hard to just drop music from my life, even though music physically hurts me now. I used to love going for drives, playing music in the car and bringing my camera with me to capture anything I found on the side of the road. I loved to walk everywhere I could, exploring city neighbourhoods and abandoned towns. I played sports recreationally, had plans to build an old truck, had worked about 20 different jobs in different industries, and was still figuring out my life. When I became ill, I had to completely reimagine my life and what my interests, abilities and future plans were because of the limitations of my body, and am still trying to learn more about myself as my health and limitations change. 

Learning new interests and abilities, and working with my new limitations could be an exciting time if it weren’t for the anxiety and dread I feel from wondering where any support is going to come from. I am ineligible for PWD (benefit) because I live with my partner, but they have lost their job due to the pandemic and are facing the need to go to school, find a new industry to work in, keep us afloat, and take care of me all at once.

After years of declining and more complicated health, and being unable to work anymore, I decided to try to help out my partner with our financial situation and apply for disability benefits. It was a huge wake up call for me, as someone who hasn’t always been disabled. I thought people on disability were well taken care of. I believed in government safety nets. From a young age, I heard the rhetoric from non disabled people that people on disability or living on assistance were lazy freeloaders, that they were liars, and that it was some kind of easy way out of having to work. It’s hard not to internalize that. 

Accessing and applying for the disability benefit has been difficult for me, as someone with a concussion and Hyperacusis. Not knowing how to find out about how to get help, it was a very arduous, difficult and tiring journey. I had to start with Google, pushing through hours of eye strain and screen time, just to navigate websites and try to find email addresses. My partner phoned around and sent emails for me when I was too overwhelmed, and in too much pain. We asked friends and advocates and organizations, limited during the pandemic, to what services they can provide. We were directed to do a lot of reading and sifting through government and disability organization paperwork before we were even allowed to make an appointment. (And those appointments were only by phone.) If I didn’t have my partner there to read through the information for me, and with me, I wouldn’t have gotten anywhere. For accessibility, disability advocates and the benefits system seem more purposely obscured than readily available for the people who need them. I soon found out that even the “Ministry” itself couldn’t answer some of my questions about eligibility. 

For accessibility with the Ministry, I indicated on the DAB application that I wished to communicate with them via email. The harsh frequencies over the phone are painful to my ears. When they eventually contacted me, they called my phone instead. My partner had to call them back on her phone and talk to them for me. Having somebody speak for me due to a simple communication access fail feels dehumanizing, takes away my independence and autonomy, and leaves room for communication errors. There is also a dangerous potential for things to look like I can’t make my own decisions, because my simple communication needs are not being accommodated. 

Despite being able to medically qualify for DAB, I cannot receive it because I am living with my partner. When they phoned (not e-mailed), they told my partner that I “shouldn’t bother” continuing with the application because my partner’s “income” would prevent me from accessing the benefit regardless. My partner is on EI because of the pandemic decimating the music industry, where they had worked for over a decade, and that industry will be the very last to recover, if at all. 

According to the Ministry, the only way I can be in a relationship and qualify for DAB is if me and my partner make less than $18,000 in combined income per year on top of the DAB. That means that 2 people are expected to live on a maximum of $37,000 per year. I don’t know if we are also supposed to time travel to the 1950s where this was a liveable amount in a city like Vancouver, but should someone tell them I haven’t received my time machine in the mail yet? Disabled people can’t just go live in a small town where it’s less expensive, because of major accessibility issues and because there are not enough community supports or organizations. 

So because I can’t get on the benefit, I rely 100% financially on my partner. I also rely on them to make phone calls for me because nobody accommodates hearing disabilities, including my family doctor. My partner has better things to do, and their own life to live, but we can’t afford to hire someone, because I don’t receive any financial assistance. 

Here are some things that are extra, on top of living costs, for which I receive no financial assistance and are not covered by MSP. Therefore, I go without a lot of these things:

– A car, because I can’t walk far or stand on public transit, and the noise level is too loud and unpredictable.

– Supplements to keep me somewhat healthy

– IV therapies from Naturopaths

– Hearing protection and other assistive devices (noise cancelling headphones, earmuffs, earplugs, fl-41 blue light glasses and special prescription prism glasses for my concussion, soundproofing, grab bars for showers and bathtubs, dimmer switches)

– Food that is free from Gluten, hormones, antibiotics and additives, and is fresh and organic, to avoid major flare ups that put me in bed for weeks.

– Counselling and therapy for the stress that financial struggle and inaccessibility puts on my shoulders, losing my independence and dealing with the grief of losing my career and everything I used to enjoy.

– Expensive vision therapy for my concussion, provided by a Neuro-Optometrist, whose initial appointments start between $200 and $500.

– Physiotherapy for my tendon injuries which I sustain regularly.

The unpaid labour of my partner, instead of a hired aide:

– Making my meals, while making the absolute minimum amount of noise, which takes more time.

– Reading through complicated paperwork for me.

– Making every single phone call I have to make, and speaking for me, including personal medical appointments, because accommodating my communication needs is “impossible” for most businesses and service providers.

– Assisting me on walks in case I fall or injure myself or get stuck somewhere where there is loud noise and I can’t walk around it.

– Shopping for me in loud stores or places I would get too tired and overwhelmed.

– Keeping track of my appointments.

– Driving me to appointments.

– Paying for my food, shelter, medical devices, supplements, treatments not covered under MSP.

– Washing and putting away my clothes.

Every time you see “in a pandemic” replace it with “with chronic illness” or “with a disability.”

What do you dream support for people with disabilities could look like?

I want to feel like my life, well being, and rights are the same as someone who can work, or is not disabled. If $2,000 is the minimum amount each adult needs to survive, then I don’t want to be told I am an exception because I, like 25% of the population, have a disability, or because I happen to live with someone.

I want to have proper community care so my partner doesn’t have to have a second job looking after my needs. I want to be able to still live with my partner. Support would look like access to training for jobs that I am able to do, and then work as much as my body is able, or as much as I want to, while being able to also hire disability support services. If I can’t work at all, DAB should be there to cover my living expenses, as well as disability support services so that there isn’t any financial or labour burden put on my partner. The ridiculous income caps for partners are in great need of revision as well. I should be seen as an independent partner, not a dependent who financially limits my partner to the point of destitution. 

In 2021, two people in a household cannot survive on one income alone. I want to be seen as somebody with lost income in my partnership, just like how able bodied people have been treated in this pandemic: every person that lost income, whether single or common law or married, received CERB. That includes multiple adults in one household.

If able bodied people are given $2,000/month because they lost their ability to work due to a medical reason (pandemic), disabled people also need $2,000/month because they lost their ability to work due to a medical reason (disability or chronic illness). The things that non disabled people have made accessible in 2020 are what disabled people have been asking for for decades. I know things can be changed quickly. I would just like someone to care enough to change them.

Likes / Loves:

Dark purples, dark greens, dark teals, and offensive oranges sometimes complementing those colours. The ocean, prairie thunderstorms, space, Jupiter’s moons, the sound of ocean waves, smushing my face in cats’ tummies. And of course, music.

Nora *

*not her real name

A digital painting of Nora, who stands facing away from us and looking to her right on a snow covered bridge leading into a forest of Evergreen trees. It is early evening and the sky is light purple, the snow is shades of purple and blue. Nora is a young Indigenous woman with long brown hair, wearing a fur trimmed hooded grey coat, with a purse strap visible on her right side. She wears black pants and dark boots that are just above her ankle with grey socks. The entire image is slightly blurry with edges of bright magenta and light blue adding additional outlines to Nora and the objects in the image.
Nora

Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.

I’m located in Port Alberni, BC. I am 21 & have a mental illness, where I have to take a monthly shot to help my thoughts run better through my mind. I was/ am diagnosed with Schizophrenia & Early Psychosis. My interests are art, painting and sometimes drawing. I’m a First Nations woman who grew up in the States but moved here to BC. I’ve been on Disability for almost two years now

I do not make enough to meet my basic needs. I have two cats that are my emotional support animals, and I also have rent that’s $700, Hydro $70, phone bill $45, food usually around $300 to $400 a month. I work in retail, and I’m only able to make less than $2000 a month*. Sometimes I make less. Sometimes I can’t feed my family because we don’t have enough money. I can’t get the things I need sometimes like toilet paper, laundry soap, & so on.

Since I take a monthly shot, it’s hard for me to do some jobs at work, like when I’m doing boxes and putting merchandise on the shelves. Not just that I have sore pain in my arms while I’m also working the til, it’s constant motion. Sometimes I’m able to work and sometimes I’m not, depending on how the shot was given to me.

*in total, including Disability Assistance

What do you dream support for people with disabilities could look like?

I would like equal payments, where everyone on disability makes the same amount. More rent money, more basic needs like transportation.

Likes / Loves:

I love cats and dogs, I have a passion for makeup, & I like to play volleyball sometimes.

Chris

A digital painting of Chris, a light skinned man with black hair, glasses, and a shadow on his upper lip and chin. He is wearing black glasses and smiling at the viewer. He wears a blue suit with a white flower pinned on the left side, and a white button up shirt. The background is decorative a pink floral pattern drawn on red.
Chris

Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.

I’m a Greek originated, neuro-diverse, working class male, living in BC, and I do community art. I can lead with that now that in my 30+ years, I’ve become comfortable with this skin I’m in — embracing its challenges and peculiarities, while leaning into its preciousness.

I’ve had Cerebral Palsy (CP), a disorder that adversely affects movements and one’s ability to maintain balance and posture. And although my CP is very much a part of me, it’s not immediately visible to others. My personal case has caused a semi-severe speech impediment.

Though I’ve had CP my entire life, I didn’t say the words out loud until I was in my early twenties. I don’t think I even noticed I was doing it until I was talking to some people who knew me best, but they didn’t know I had it.

Being disabled has shown me how strong and resilient I can be, while also reminding me of the importance of kindness. Being a working class man has taught me fortitude, focus, and courage, and shown me the love of brotherhood and connection.

I can’t remember myself at a period when I did not have to worry about financial security. Life has been always a balancing act, and I am certain that this impacted negatively on my mental health. I gave up non-necessary items (sometimes, labelled as such by government agencies in exchange for benefits) to cover ultra-basic needs. Luckily, I could and can rely on understanding partners/ friends/ community groups for support. 

It takes an awful amount of time to deal with bureaucracy here (Canada) re: disability. The front desk staff are overall friendly but clearly overwhelmed by the work load. 

There must be a balance between the paperwork required from a disabled person and the checks and balances to review the veracity of the benefit claim application. The process can be painful and exhausting, and it can discourage potential applicants in need.

I am worried about the digital flip applications for benefits take, because not many people I know are tech savvy to start a claim on line. 

What do you dream support for people with disabilities could look like?

I wish us all : An independent living; An unapologetic way of being; A reclaiming of a sovereign ‘I’ about who we are, how we want to be seen and identified. The things that make us different bring us closer together. They give us space to learn and be better versions of ourselves. Going through painful moments in life, I am proudly presenting myself – Chris: Human. Complex, varied, able, adaptive, beautiful in composition, rare, and capable.

Likes / Loves:

My favorite color is red (passion?) and I have plenty of shirt and blouses in red, pink, light blue and white. I like color in my life, in general; I like to follow horoscopes. Am born on the cusp Sagittarius and Capricorn and this leads to internal tensions between excitement for anything new and reluctance to change.

Art has been a consistent and therapeutic release for me since a very young age. When I felt misunderstood or alone, I turned to arts to release. Communication is not just one thing, and I think I’ve been able to effectively express that through my various choice of mediums. I knew I was drawn to literature at an early age, and every change I got, I would dig a little deeper and try something new. In some of my darkest and most isolating moments, literature provided me solace. It was an area of my life where I had complete control.

Some of Chris’ creative work:

Barbara

Please share what you would like people to know about your experience accessing or relying on the Disability Assistance Benefit. 

Today is “pay day”. Yippee! Ya right. I’m 53 and single and I live alone. I have an undiagnosed issue with my legs. Plus I’ve had 6 major surgeries leaving me with severe side effects. My legs have no stability. I cannot feel my heels or my toes. I cannot stand unassisted or without holding onto something. I received a whopping $395 for my disability. I paid my rent directly which is $1175 plus hydro per month. My hydro is not cheap. I have a current disconnection notice pending right now. So this $383 ($12 taken for bank fees) must pay my internet which is $60, plus I owe a friend $40 for helping me get food before payday. I don’t know how we are expected to live the entire month on this. This also has to cover food that the food bank doesn’t provide. I was able to make it a little bit better before the $150 from the COVID benefit was taken. I greatly appreciated the extra $300, that helped me so much. It was still tough, even with that, but the struggle eased slightly with it. $375 is incredibly low for rent. I’m paying $1175 for a small one bedroom aparment.

When I moved in here, after 2 months I got bedbugs.I took this place because I could have my cats. No other choices. I really want to go back to work. However, all the training and experience I have I need my legs for. It’s very frustrating. I didn’t ask to be reliant on disability. I tell what I get and I try to make the best out of it. We desperately need a raise!! I don’t do drugs or drink or smoke either. Good thing!

Is there anything else you’d like people to know?

Yes, for the negative attitudes towards us out there. You better pray to your God that what happened to me never happens to you. This condition I have came out of the blue. It started with a burning back and tingling, numb fingers. This has been 4 years now with no answers nor clues! You may have to live on what we live on one day and trust me . . . it’s not fun nor easy!

What do you dream support for people with disabilities could look like?

That we can afford our rent without having to take most of our support to do it, and feed ourselves decent food and pay our bills every month! That’s my dream for us, anyhow. Those are just the basics I struggle with most!

Chloe

A digital painting of Chloe, a young Caucasian woman with slight wavy chin-length hair, wearing light teal glasses, a denim jacket, and a pink shirt. There is one strap from a backpack or purse on her left shoulder. She is looking at the viewer with her lips slighly parted. Her face and hair are rendered in bright and pale shades of pink, and her jacket is dark blueish green, with the stitching in a lighter blue. The background is decorative with a pattern of drawn daisies outlined in white and small dots against a turquoise background.
Chloe

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.