Anonymous

I often feel assisted suicide is a preferable alternative to the slow death by deprivation while subsisting on PWD (which is not death by natural causes). I’ve written letters, and visited the MLA to no avail, I was told “more people need to come forward for it to make any difference”.

The sicker one becomes the further one can fall through the cracks, and be misunderstood. I would like to share my experience attending post secondary education, but I’m afraid. It’s as the other person mentions, it’s like the government wants us to die off, the neglect of our sick and “disabled” populations is abuse to say the least.

Politician’s rarely if ever say the word disability, it’s as if we don’t exist as equally human. We are expected to “fix” ourselves to integrate if we are “able” enough, otherwise stay out of the way aka ableism. Even the word “disability” isn’t useful in my opinion. It was meant to set people apart in order to help them, and ended up being a word used to divide and oppress a vulnerable population.

Too many people profit off of the “disabled” through charity, and non profits without trying to change the policies or institutions that legislate poverty. People that are suicidal or depressed from being sick and or living in a state of deprivation of the culture around them don’t need another “crisis line” or food bank. We need our culture as a whole to work together to find each other’s strengths and put them together.

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!