Anonymous

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

We actually got to eat other meat besides hamburger (with the $300 COVID supplement). We ate hamburger for years till we received the $300.00. We got to enjoy eggs more then once a week, fresh fruit and veggies. Us adults had to start skipping breakfast a week before check days, as we would save the food for the kids to eat. Never any fresh milk for us to enjoy for I can’t even recall how many years. Sometimes kids didn’t go to school as there was no lunches for the kids to eat. So kids have to miss a few days of school every month with no lunches. We live below the poverty line. Please keep helping out with the $300 a month.

we’re still below the poverty line. But we got to experience eating good food. Sadly the kids have to be hungry like us adults.

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

Good food.

BC residents with disabilities have also been invited to share their experiences in a web only component of the project. This is one of those entries.

Theresa Maria

Digitally illustrated portrait of Theresa's face and shoulders. Theresa is a Caucasian middle aged woman with medium length slightly wavy light blue hair, dark blue rimmed glasses and is wearing a purple shirt. She is smiling slightly. The background is green with decorative music notes.
Theresa Maria

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

I live in central BC, and before my health got really bad I I did marketing and grant and proposal writing. In my early twenties I ended up with endometriosis, which is one of the reasons I went on to PWD, because I had it very severe. And then we found out that I have Celiac disease, which is an autoimmune disease, and a lot of people that have Celiac disease often get more autoimmune diseases. So because of that I also have Osteoporosis and Arthritis, and Psoriasis of my feet and hands.  And I’m also dealing with an acquired brain injury. I use a power wheelchair.

But I’ve always been optimistic, so even though I have challenges, I still do the best I can to keep improving myself and keep moving forward.

I have to start off by saying that I am very thankful, and very grateful that in British Columbia we do have PWD benefits, because I can’t work, especially full time. Now, that said, there were a lot of cuts introduced between 2009 and 2012 to the PWD program, and those cuts have made a huge impact. I am in subsidized housing, but if I wasn’t I would either be living in a one bedroom apartment with no way to afford utilities, medication, food, clothing, the basics. Or I would end up being homeless, because we all know that $375 a month for rent is totally unrealistic. And even where I live, in the last three years, we’ve seen basement suite go from $750, $800 a month up to $1300, $1400.

That said, even though I’m in subsidized housing, I still struggle a lot to afford my medications, because I take five medications and some of them are not covered. For instance, my migraine medication is 7 tablets for $120.00, and those are not covered. And when I run out of those and I have a severe migraine my only option is to go to emergency, and because I don’t often have the $20 for the wheelchair taxi to get me to the hospital, and then another $20 to get home, I often don’t go when I really need to. I have two medications that are not covered whatsoever, and we have tried substitutions and everything, but I have a lot of allergies so a lot of medications that are cheaper or generic I just am not able to take, and that’s kind of part of the issue around people with disabilities – one size does not fit all. I just spent, in the last three weeks with my Psoriasis, $150 for one prescription, $38 for one prescription, $47 for one prescription. These were not covered. And I have to buy a cream called CeraVe for the Psoriasis. Now that’s not a prescription, that’s  off the shelf so that’s not covered, and that’s $36 for a jar I go through in 2 weeks.

 So I do have to make choices between filling all my medications for the month and the things that I need that are off the shelves that are not covered by medical or, do I buy groceries? And that can be a tough decision. And because I’m in subsidized housing I am not eligible to utilize a food bank. They don’t take into consideration that I require  a special diet, they don’t take into consideration my bills, my medical expenses. So we have like a certified and accredited food bank that I don’t utilize, but I do sometimes utilize another service that will help me, but it’s only like every two weeks or even once a month. So there is definitely, I would have to say every month, I have to make a choice between certain medications, certain off the shelf things that I require, or food. Because I have to pay my rent, I have to pay my utilities, my overhead. That has to be covered or I just don’t have a home, so you have to figure out . . . are you going to rob Peter to pay Paul is really what it comes out to. 

And I would love to be able to go back to work. I tried to go back to work, and because of my brain injury a lot of my executive skills were affected, and I haven’t retained the skills that I need to use Microsoft Office program, which would be huge part of me going back to work. So, I’m not even able go to work and make the extra benefit that you’re allowed to make. So, that’s a little bit frustrating, because I would love to go back to work, even part time and make an extra $600 a month. But right now, for me I’m not physically able to do that.

I haven’t had any trouble accessing the benefit, but I get frustrated with it. You know, one thing that I’ve really been kind of loud about with the ministry is, before COVID, if I had to travel from central BC to Vancouver for medical treatment before before April 2010, the Olympics, a person would receive $50 a day for a meal allowance. But the Liberals, right before the Olympics in 2010, they passed it as a legislated law, in Victoria, to lower those medical travel meal allowances from $50 a day down to $12.00 a day. So we still have that in BC, so people with disabilities that have to travel out of their region, more than 40 kilometers from their home, and require a meal allowance, they now get $4 a meal. And so if you have someone that say, has heart issues and has to eat a sodium free diet, or someone who is diabetic, or someone like me who has to eat gluten free, we all know, that that is really not possible.

The ministry says well you get paid money, you’re given money for food during the month. But let’s be realistic, if there’s $375 for your shelter, we know that that is going to be supplemented with your your food money. So if you’re traveling out of town, especially if you have special dietary needs, you are not going to be able to bring frozen food with you. If you’re traveling by plane you can’t bring your canned goods. When I say that people with disabilities are often invisible, they also have invisible situations. And this is one of them that you don’t see it, nobody really talks about it. If you haven’t experienced it, even if you are a person with a disability, but you haven’t experienced that, then you don’t know. And it causes quite a quandry for people when they have to travel. And that’s one of the big issues with people with disabilities, is food security. Now, nobody is really traveling right now during COVID, I’ve travelled once since COVID for medical, but these are things that really still need to be addressed.

And because the Liberals passed that as a legislated law, it’s on the books. And that’s part of the problem with the PWD field here in BC, is the government puts policies in place, and if they become legislated they’re in the law books. And once something is legislated it’s very very hard to change it or to expand it or decrease it. And so I think that’s part of the reason we have these issues that were having now, because in the past these things that were legislated.  And this is part of the PWD issue, and most people are not aware of of that. That these things have become legislated, and that they’re hard to change once they’ve been put in place.

I find that the individual ministry workers themselves are usually very nice people. I find that there’s a lot of burnout. There used to be a time when PWD clients had their own separate office. It was a pilot project that started up here in Prince George, and yeesh, that was like 20 years ago. And it was amazing.

When we had a separate PWD office, we had our own separate PWD workers, life was just so much easier. Talking from my experience, I was able to become much more productive. I had one social worker, she knew my case history, she knew my medical file, so she was the only one I dealt with. So whenever I needed some form of assistance it happened very quickly. I didn’t have to go and explain my entire history to her, and it was just a good situation. And having that kind of support and help, I actually ended up going to work and working at the college doing what I love to do.

The other benefit of that is that people with disabilities are not people on social assistance. They’re two different types of clients with two different types of needs, and they need to be addressed differently. I mean, if you’re on social assistance or welfare, you’re on social assistance or welfare. If you’re on PWD, which I think should not be called “social assistance for people with disabilities,” it should just be “PWD  benefits,” the needs are totally different. So now that we have the office working with both sets of clients again, there’s not a lot that gets accomplished for people with disabilities.

And because of all the cutbacks, one of the things that I have found . . .  well the staff are really good, they are always helpful. But we don’t have as much staff now, so it takes away from that personal feeling. And, being a person with a disability, like I’m always gonna have it (the disability). So I should be able to go in and deal with one social worker, because this is why social workers do this work in the first place, because they’re people that want to help other people. And a lot of them get burnt out now really quickly.

There was a time when they put the social assistance and the PWD’s offices back together again. What happened was, you had everyone on social assistance, and I’m not knocking anybody on it, but the times are such that we have a lot of people with addictions now on social assistance. And now that you have people with disabilities and people on social assistance in the same office again, we now have people in line and there’s drug dealers coming up and talking to people in line saying “So you’re here to get your check, just let me know, I’ll drive you to the bank when you’re done.” And I had people asking if I wanted to purchase drugs from them, I had people ask me if I ever want to make extra money get ahold of them . . . and I’m like what are you talking about?

But this is my big pet peeve.  I love the staff, they’re always helpful, they’re friendly. But it makes no sense to me . . . People that are on social assistance should have their own office with their own workers. And people with disabilities should really have their own office and have been given their specific social worker and they should be able to provide better support. I’ve used the service both ways, and I feel really strongly about that actually.

Contributions from friends, family:

If I don’t sometimes have family and friends purchase off the shelf medical products, and special foods that I require for my diet, I just wouldn’t have them and I would be worse off. There are many things that if my family and  friends didn’t help me with I just wouldn’t have them, that’s just the bottom line. And that’s even in subsidized housing.

Other costs:

My power wheelchair is covered but, again, due to cutbacks in 2009, 2010, dental has been really cut back. Because of the Celiac Disease, and I have to take Dilantin, they both effect my teeth. I’m supposed to have my teeth cleaned every three months, which I did for years but now I can only afford to get them cleaned every every nine months. I had to buy a mouth guard and that was almost $500, and I had to pay $220 of that myself. The dentist is saying “you need this,” so they order it, and then you know, it’s a  business so you have to wait ‘til you pay that bill and then you get the product. I went for about four months where I really needed that . . . I have medical items that I didn’t have the money for, so I had to pay on it every month. And I take that out of my food money. More needs  to be covered for dental, really. I mean, I don’t need dentures or anything, but there should be full medical and full dental care. Even with Fair Pharmacare, a prescription was $150 for two tubes of special cream for the Psoriasis. I just don’t understand that.

 And because I have a head injury I wear glasses, but I have a special prescription. You can only get glasses covered every three years, but when you have a disability, depending on what the disability is, sometimes your vision can change in six months. So, that’s a big one. People not having proper eye care. For me, I got my glasses, but I had to pay an extra $300 out of my pocket because I had to have anti-glare. I had to have a yellow tint because of the brain injury. And these glasses are two years old, and I need new ones now because my eyes have gotten worse. But I have to wait another 12 months. So, having the brain injury, how is that going to effect my vision in two years time?  When I have to use these deterrent ones for a year. 

So, the issues around not having proper medical and dental coverage, I think it actually causes more expenses in the long run. Why not pay $500 today for a pair of glasses that are going to work then have to pay me for eye surgery a few years down the road? And I know a lot of medical equipment is no longer covered. I had to go and buy a bath seat and a bath mat . . . I need a new cushion for my power wheelchair, but because my power wheelchair cushion is so expensive, and I still have two years left before I get a new one, I have to make do with that. 

Things that often look good on paper are often really not applicable in real life, and that’s part of the problem with the medical and the dental aspect of it. If you’re on disability, it should just be mandatory that whatever medical care you need, or dental care you need, you get in a timely fashion. For instance, I had a friend on disability, and her dental care was not covered, and her teeth literally became little black stubs in her mouth. And they wouldn’t remove them because it cost too much, until she went to emergency. And hospitals don’t do dental surgery very often anymore, but because it ended up causing a blood infection she got them taken out. But then she had to find work that would cover them because only a certain portion of dentures are covered. So she had to find work, start part time, get on full time and then be there for two years so her medical would kick in from work. And that’s how she had to get her dentures.

You know, when you have a disability, meeting your basic needs and the necessities of life, it should not cause you such frustration, because when you’re living with a disability life is already extra work than the average person. And then you add this lack of medical supplies, medical supports, prescriptions, your dental care, your eye care, even physio. For people with disabilities, these are our basic needs. These are not things that are extras for us, these are things that we need to be able to function. 

And one of the other parts of this is physiotherapy. I’m supposed to have physiotherapy twice a week. I get, I think it’s six or eight physiotherapy visits  per year where I only have to pay $20. So for me, I can go for two and half months at $20 a pop, and then after that I have to go back to paying $70 a visit. So am I getting the physiotherapy that I need? No, I can’t afford it. Last time I went for physio was July, and that was just one month. That was one time in one month. And it’s instead of going eight times in a month.

And, I’m also supposed to have massage therapy, but again, you can only go for a certain amount of times, and then you have to pay full price. So because I require physiotherapy and massage therapy, in two years I’ve only gone for massage therapy once, because I have to choose which is more important. And physiotherapy is something – I can do those movements over and over on my own, so I kind of have to pick which am I going to get more of a benefit from? And that’s really frustrating because with these disabilities that I have, none of them are self-inflicted. One of them I was born with, the Celiac Disease, which in turn created these other autoimmune diseases. And then I was in an accident.

If I’m dealing with this I’m sure there are other people dealing with this in BC. The whole system really needs to be revamped, and I’ve always wondered, you know, they do all these support groups and these focus groups and these studies, but I rarely hear of anybody with a disability being involved in the decision-making. And that is one of the biggest things that needs to change, is if you don’t need these services, you don’t know. There are people making decisions for me and my life, and they are able bodied people and they don’t have disabilities, and they’re just taking their information from reading different reports, and not actually talking to people.

Because of that, I have lost a lot of friends disabilities that couldn’t get into subsidized housing, couldn’t find a roommate that they were compatible with, and just get so fed up trying with the daily struggle, of trying to get their basic needs met, that they have committed suicide. In the PWD community, you know, if you were to do research, the suicide rate is pretty high for people with disabilities. And, you know, there’s big talk about addictions right now. I believe that a lot of people, I would probably say maybe 15% maybe even 20% of people with disabilities have some form of addiction through trying to self medicate. Because they are not having their basic needs met, whether it’s shelter, food, medication. Because when you’re hungry and you don’t have anything to eat, or you’re in severe pain and you can’t afford the medication that will help with the pain, let alone painkillers, people tend to self-medicate, because what are you going to do? Not everybody has a strong willed disposition, do you know what I mean? And people with disabilities are often, you know, they’re stressed out, they have anxiety, they have depression . . . And I’m talking about people with physical disabilities, not even taking into account people with mental health disabilities. It all becomes very overwhelming, you know.

 I used to be a businesswoman, a lot of my friends are business people, and they don’t know that I live on $1200 a month. And I I get a lot of invitations to go places, and I have to turn them down but, you know I went out with a friend a few weeks ago. She said, “Oh, let’s go for lunch,” and I wanted to do that. I wanted to feel like I’m part of society. So, I went, and I have to eat gluten free food, so I spent $18.00 on an amazing lunch, but I didn’t buy any groceries for three days. I went without almond milk, I went without lettuce, and tomatoes and produce, because that’s a choice I have to make. Going out for lunch with my friend makes me feel a little more normal. Because all my friends go for lunch together all the time. You know, most people do that. And when you’re on disability, you don’t have the the energy, or the cash, to be able to do those kinds of things. 

And my friends invite me out for lunch a lot. I am lucky that I have friends that are like “Yeah, I’m going to pick you up for lunch, don’t worry about it.” Sometimes I say yes, but sometimes I say no because I kind of feel like I’m maybe a bit of a burden on them. And these are the ones that know that I don’t have a lot of money.

When I was in Vancouver once for treatment, and I had to stay longer, I had no money, I didn’t have any money.  And the ministry did not send me any money for a day and a half, and this is  before I knew I had Celiac, and they finally sent money, so I went to eat in the hotel restaurant. And I had prawns alfredo. And they were so mad, that worker phoned me in my room and lambasted me for over an hour. How dare I order fettuccine with prawns. How dare I? Well, I can’t have beef, I can’t eat pork, they were out of chicken, so that’s what I ordered. So I had to take that out of my own money and pay that back. Can you imagine? I’m super sick, I’m in Vancouver, I’m seeing the neurologist. I’m being tested for epilepsy, and I was down there for a long time and not eating. Like I didn’t have any money, because what do you do when you have such a little bit of money? It’s not like you have spare change right? I had nothing to eat, I didn’t even have change to go and get a pop. So when they finally came through I went and got something that would fill me up. It would taste good, it would fill me up, it would re-energize me, and it would kind of stick to my ribs. And then for her to, that worker literally screamed at me for an hour, and when I came home I had to go into the office and give them back that $20.

And that’s kind of the stigma too with people with disabilities. “Oh, you’re low income, you don’t wanna buy that.” Even though it’s really nice and it’s like well sure, why wouldn’t I want to buy it. I’d like to have a nice TV. Just because I’m on disability doesn’t mean I can’t have a steak dinner or lobster dinner once in awhile?

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

A perfect world people with disabilities would have timely access to whatever medical and dental and eyewear needs, when a specialist or doctor says “This is what you need,” that those needs are being met. And and that people with disabilities really should, particularly if they’re not able to work full time, they should be able to have an income from the government that is at the same level that the federal government says is a level of poverty. Because in BC, the federal government says that the single person who makes less than $26,000 a year is living in poverty. So why is it that the provincial government says a single person can live on $13,000 a year, when that is half the level of poverty. Really, for me, I I don’t understand how that is justifiable.

One thing I would say to the government would be to separate people that are on social assistance, that should be it’s own ministry, and then people with disabilities, that should be their own ministry, and their own programs, and their own budget and everything.

The government also needs to seek out more input from the disability community, and across all socio economic and cultural lines. They need to be more involved in policy and decision making, there should be focus groups going on constantly around new policies that are being made. And those focus groups, they should have four people from the ministry and four different people from different types of disability. Because this is why the program for people with disabilities has become stagnant. Because you’re not having the end users being involved in the prime decisions. PWD need to be involved in protocols, and give feedback on what works or what’s needed. 

When it comes to things like accessibility, PWD’s also need to be asked. People without disabilities have no idea what is needed. For example, someone who doesn’t use a wheelchair just thinks you need to be able to fit a wheelchair into a space. But when I use a “disability washroom,” that’s supposed to be accessible, like the ones at the hospital I go to, and I can’t turn around in my wheelchair, it’s obvious the builders didn’t talk to anyone who actually uses a wheelchair. This is everywhere; in restaurants, malls . . . So things might be accessible on paper, but not in real life. Can I use the ramp when it snows? Can I fit my bags or my groceries? This is why people with disabilities need to be part of the process from the beginning.

I’m not a professional advocate anymore, but people still know me from that work, and they come to me for help sometimes. So I help PWD with forms and letter writing, and other advocacy work they can’t do on their own. And I just see how many people fall through the cracks because they can’t do all the things they need to do to get help.

Like I applied to get a medication covered by the ministry, that I need for my Psoriasis. Right now my hands crack and they bleed, and the medication would help with that. My doctor wrote a note, because if he wrote a letter on his letterhead, like the ministry required, he would charge $150. So he wrote a note because it was free, but he couldn’t fit all the details, so they rejected it. So now I’m filing an appeal, but I have to spend $150 to get the official letter. So that’s something I can do , but costs like that add up, and it’s hard for people to navigate, so they fall through the cracks.

When I imagine what it would be like to have enough support, to not have to worry so much and use so much of my brain energy making sure I can pay rent and bills, and afford food that is ok for me, and to be able to use physiotherapy and massage therapy so I could have energy and feel ok . . . If I didn’t have to choose between my medication and food I can eat  . . . I imagine how much I’d be able to contribute. I want to go back to work, but when you have a disability it’s hard, because you can’t work if you don’t feel ok. But you only feel ok when you can afford what you need, like medication, and  supplements, and the right food and therapies. But you can’t afford those things unless you work.

If PWD had our basic needs met, and proper support helping us, and a liveable, sustainable income . . .  I just think about if you could measure that productivity in dollars. Like people want to be involved and contribute and work, but we have to focus on survival. It’s an untapped workforce.

Likes/ Loves:

Music, classical music, violin, trumpet, flute, calligraphy, nature. Blue, white, flaming, rust, blues and greens, outdoors, stars, the moon.

Anonymous

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

People need to realize and understand that the rate of pay for those on disability in BC is equivalent to an enforced culling of the herd.

With rent cost skyrocketing, food costs equally rising, and everything else also increasing in cost, except the opioids so many are turning to in an attempt to numb the pain of realizing they are essentially wanted dead.

People on disability are treated by the BC government as though they are nothing more then an economic burden in times when others are also now beginning to feel the weight of the rising cost of living.

I don’t eat so others can. I do this because I literally do not have any money to buy myself the food I need to be able to eat on disability alone. I have eaten 10% of the total meals of this year, and while I enjoy the weight loss, the dizziness, the stars I see when I stand, the increase in pain I have endured as the stress at times of this knowing has crushed my heart.

I don’t expect anyone to care. I walk alone, but I also feel that as a human race with any dream of a claim to decency this should not be the case.

Disability rates should be raised to the CERB rates at minimum. This province has too long placed burdens of worthlessness upon the shoulders of those suffering and it’s past time for a change.

Society pays a higher cost for the continued willful condoning of such suffering in so many ways the logic can not be denied by any who has the intelligence to view the totality of the issue.

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

They are included, valued, respected, and held as members of society able to walk through their days with their heads raised vs. shoved to the ground.

BC residents with disabilities have also been invited to share their experiences in a web only component of the project. This is one of those entries.

“Poverty” / Anonymous

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

 Been able to eat 3 times a day with the $300 a month. We were able to enjoy once a month take out food. Kids were able to have all the fresh fruits they enjoyed.

 Kids living in poverty is heart breaking to be a part of. Please continue with the $300 a month to help out.

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

Watching kids eat from the 4 food groups for one thing. Not seeing kids having to go with out the proper foods to grow.

L

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

I can not find a place to live. $375 for rent leaves me homeless. I tried renting a room, but the situation left me vulnerable to mental abuse. I now couch surf with family and friends, all I own in a storage locker. There is no safe place to rent under $1400 I don’t even make $1200.

BC residents with disabilities have also been invited to share their experiences in a web only component of the project. This is one of those entries.

“Over 60” / Anonymous

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

Rent paid on time each month. Bills paid for in full. I need a place to live, these need to be paid first. No money left for food. I rely on food bank each week. I walk to the food bank to save change if I have any to catch the city bus with some food. For the first time in years since I got the $300 extra I could buy food. I was eating eggs for a week after check day. No milk for too many years to count. Fruit is the same. And vegetables too. I was able to buy fresh. I would eat breakfast if I had it And maybe supper, of usually soup, as soup is cheap to buy.

I do not look forward to not being able to eat food. The $300 helps me buy food after years of not eating properly.

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

 It took a pandemic for them to realize there are people who have no food for years. So they can have a place to live. Please don’t take this away.

BC residents with disabilities have also been invited to share their experiences in a web only component of the project. This is one of those entries.

Lindsay

Lindsay is a Caucasian woman with brown hair, and she is rendered in shades of yellow and orange. She is looking down at and kissing the top of her cat's head, who is rendered in shades of green and lying on a blanket striped in shades of orange, yellow and brown.
Lindsay

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

I live in the Lower Mainland. I’m on PWD, and I’d consider myself under employed. I make and sell crafts and work very part time at a quiet retail shop. Normally that brings in just enough to bridge the gap between disability checks and what it actually costs to exist. The pandemic has made it harder because I can’t sell crafts at markets anymore. You cannot survive on just the disability amount alone, it’s just not enough to make ends meet. 

I have multiple chronic illnesses, and as a result of dealing with all the physical stuff for as long as I have, I also have some mental health stuff too. 

It’s a nightmare trying to live on that little, especially in Vancouver with the housing market the way that it is. It was harder when I first got sick because my rent was more than the disability checks, so I couldn’t stay there. I lost my home, and I have basically struggled with housing instability and really unsuitable living situations since.

I have definitely had to choose between different necessities. I need a roof over my head, so I pretty much always pay rent first. I’ve had to make some hard decisions about medications that aren’t covered. Basically, if I have to pay for them out of pocket I can’t have them. So my doctor has just stopped recommending things that she thinks are suitable for me if she knows I can’t afford them, because I’m just going to tell her no anyways. So there’s definitely some medications out there that would be good options for me that I just don’t have access to. I don’t have access to supplemental care like massage, or physio, or acupuncture or anything like that. It’s subsidized by the ministry, but nowhere near enough. It’s still a prohibitive cost. 

I’ve also had to make decisions about food. That’s usually where I cut, because the meds I’ve pared down as much as I can. So when things are tight, I just eat less. I don’t really have the option of buying cheaper food because I’ve got a bunch of digestive issues from my condition. Because I’ve got so many dietary restrictions and so many foods that I can’t eat, I have to buy foods that I can eat, which are more expensive. I just make smaller portions when money is tight.

One of the choices that I’ve had to make is around my phone and internet access. I can’t afford to use data if I’m not attached to Wi-Fi, so when I leave my house I have no data. I try to use the phone as little as possible, especially during the daytime. Basically, I have some daytime minutes, but I use them solely for talking to the ministry, because I have to talk to them or my PWD gets all messed up. And those calls are never short, and they’re never at a convenient time. So I basically have to save all my minutes for dealing with some kind of ministry disaster that is inevitably going to happen. So that’s definitely another place where I’m having to make hard choices with money.

You kind of need to have that accessibility to even be employable. Like you can’t really get a job if you don’t have a way of checking your email, or of somebody being able to get ahold of you. And honestly, if someone were to call me during the daytime for an interview I would panic about the cost of the phone call at this point. I have everything turned off on my phone and I just use it when it’s absolutely necessary, so I don’t ever go over anything. I have a super dirt cheap plan.

The biggest issue that I’ve had related to living on disability has been housing. I went from having my own apartment to living in just really terrible living conditions, both in terms of the people and the state of the house. Like, I was forced to move out of my place shortly after I had surgery. I’d been bedbound for close to two years at that point, I couldn’t even sit in the cab, and lying in the back of the cab was so painful that I cried the whole way there. And I had to be carried up the stairs into the news place. The new place was over 100 years old and it was not well taken care of. There were carpets that were probably about 50 years old – they were filthy and full of all sorts of allergens. There was black mold all over the house. Everything was in disrepair and falling apart. The house made me sicker than I had been before.

I couldn’t afford to live on my own anymore, so ended up in a roommate situation, and because the place was in such bad shape and the rent was so cheap, it attracted shady people. So I ended up living for many years with a guy that was really, really abusive. And then a revolving door of people who would stay for a little bit and not be able to deal with living with this guy and leave. And like, I’m an anxious person at the best of times, and just having a revolving door of new people was not very good for my mental health.

Also, the stress of having to find someone, having to interview people . . .  like I have trouble sitting. Sitting through a bunch of interviews of potential new roommates every few months was just a nightmare, and then you know, they never stayed. You know, the place was such a shithole, nobody wanted to live there. And I had no choice. I couldn’t afford to live anywhere better. I spent pretty much the whole time I was there trying to get out, and there’s just nowhere to live if you’ve got the limited income that folks like me have.  I’ve been through a lot of housing instability and trauma around housing and being around shitty people since I got sick.

I don’t I don’t know how many people realize what it’s like. Like, before I got sick, because of my job, I knew that there’s an intersection between disability and poverty, and that disabled people are much more likely to end up in abusive situations than non disabled people. When I got sick I was like, well that’s not going to happen to me. I had a good education I’m relatively intelligent, I had a middle class upbringing, I am good with money, I have good skills. I should be able to navigate this better. And it was kind of a shock to my system to realize just how vulnerable being poor and disabled makes you to all sorts of situations that you would never end up in if you had more resources. Like, I would never have moved into any of those living situations if I wasn’t so desperate to get out of the previous living situation. I’m not really suited for living with roommates anymore. Partly because of my disability, and partly because I’m in my 40’s. I’m tired of living like I’m 20. But I have to live like that because I have $375 a month for rent. . .  It’s inhumane.

The pandemic in particular has really made me feel the financial disparity between me and my friends. And like, my friends aren’t rich. They don’t have super slick jobs and huge salaries, but the disparity between them and me is so great already. It’s things like they wanna go and do stuff and I can’t afford to go with them, so I don’t get to go. Or you know, they wanna go somewhere that I can’t walk to, and I can’t afford the transportation to get there.

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

 I just dream of a place where people are accommodated. It’s just a constant struggle trying to get my needs met places. Partly because nobody gives a shit about disabled people, and they don’t factor accommodation into the way they run their businesses, or the physical buildings that they’re in. And then partly because my disabilities are invisible, so I don’t look sick and so I get a lot of suspicion and side eye, because you can’t see what I’m experiencing. Like I’m not missing the limb, I don’t have a deformity. I don’t have any sort of visible cues to my disability. People don’t want to accommodate me because I don’t look like I deserve it. But if we had a society where that was just the norm, where that was normalized, where people understood the difference between special treatment and accommodation . . . Like the number of times that somebody has told me “Well it’s not fair if we do that for you because everyone else will have to whatever (be inconvenienced).” Like, it’s not fair that the playing field is not level, and the accommodation I am requesting is to help level the playing field. And all they see is, “Well, if we do something special for you, everyone else is gonna get mad.” They don’t see the fact that like me being able to participate, or do a thing, or go a place, is hinged on this accommodation, and if they don’t provide it then I don’t get to do a thing.

I wish people understood what disability accommodation actually is, instead of constantly thinking that someone is getting special treatment. You know, like poor vision is actually a disability, but it is so well accommodated in our society that nobody considers themselves disabled if they’re nearsighted. I want to see that level of accommodation for everybody. Where it’s just seamless, like you don’t even think about that sort of issue because it’s seamlessly accommodated by our society. But the world isn’t built for disabled people in any way, shape, or form. We are constantly having to try and carve out space for ourselves, justify our existence, explain everything to people, and we’re basically met with resistance everywhere we try and do that.

I really just want a standard of living that is above the poverty line. Like, I would like to be receiving an amount of money that’s livable. I don’t need anything fancy, but I don’t want to be in this constant state of panicking about how I’m going to pay rent and eat at the same time. Or if I don’t sell enough of my crafts, how I’m going to make ends meet just on disability alone. I would like to get housing that is both suitable and stable. The amount of money that we’re expected to live on is just criminal. It’s not enough. it’s not humane, for anyone. And then on top of that, someone with a disability is going to have additional expenses that the average healthy, able bodied person is not going to have. And trying to shoulder those extra costs, or just go without proper care . . .  in my dream we don’t have to do that. We don’t have to choose between having care or eating. And we’re not, you know, living like cockroaches. In my dream I don’t have to work so hard just to exist.

Check out Lindsay’s cross stitch artwork and shop:

Etsy: Miss Stitched Crafts  

Instagram: @missstitched

Facebook: Miss Stiched

Kelly

Digital painting of Kelly. She is smiling with her mouth closed and her head tilted. She is Caucasian with brown short hair, black glasses and a dark green coat. The background is dark purple with a darker purple abstract design.
Kelly

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

I am a single 45-year-old woman with no children. I live in New Westminster BC. My interests include crafting, being with friends and family. My disabilities are in the category as unseen- Fibromyalgia, Myofascial Pain Syndrome, Bipolar, Borderline Personality Disorder, Diabetic insulin dependent, L5S1injury in the back that requires surgery.

I have worked since I was 16. I had my own condo. Then I was injured on a job with Rogers that has made it so that I needed back surgery. So, I applied for PWD in July of 2014. The process was lengthy and a lot of expense to have the Doctor fill out all the forms. I was accepted and started receiving the funds in November of 2014.

After I was on PWD they forced me to apply for CPPD- thankfully I was denied. I say this as BC claws back any CPP funds as unearned income.

You learn quickly on PWD that you are not seen as an equal, you are merely tolerated. I have my Mom and niece and nephew to thank as they help me get through each month, as there is not enough money to cover all the expenses and eat. I no longer have my independence= I am lucky though as my family does not treat me differently.

Trying to stay positive on PWD on a normal day is difficult- we are doing it in a pandemic where the Federal government gave the regular working people $2000, yet we on disability are to survive on $1180. this definitely showed us where we were in the importance of society, or lack there of.

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

My dream would be: first remove us from the Welfare Offices as it is two separate matters and payment levels. Also, a universal basic income where we are out of poverty with social programs standing.

Likes / Loves:

I love gothic/eccentric styles. Colours = purple, black, teals. Animal is Owl. and I love the ocean- mermaids.

Amber Dawn

Digital  painting of Amber Dawn. She is Caucasian with long red hair and black glasses. She is wearing a white and navy sleeveless top. The background is pastel green with darker green skulls.
Amber Dawn

Please share about yourself, your experience with the disability assistance benefit, and anything else you would like people to know.

I live in Sidney with my partner and two children. I’m a writer, a lover of coffee and skulls, and I’m a proud member of the LGBTQIA community. I have Ankylosing Spondylitis and Osteogenesis Imperfecta, which I manage mostly with dark humour and sarcasm. Sometimes the drugs help, too.

You know that saying “If I don’t laugh, I’ll cry”? That’s my life on the disability assistance benefit. Every month I’m sickened to see what my assistance amount doesn’t cover. I’m very fortunate to have a partner and family and friends around me for support because if I didn’t I wouldn’t be able to live on the assistance benefit. My monthly medication costs are more than I receive and without it I would be in constant pain and deterioration, both physically and mentally. As far as I can see, there is no quality of life on the benefit. It’s dehumanizing and shameful, and we’re expected to be thankful for it.

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

That people with disabilities are no longer ignored or only acknowledged when the government wants to pat itself on the back for doing less than the minimum for us. That we have access to grants and funds that would allow us to pursue our dreams of improving our lives without risking losing our benefits. People with disabilities can be artists, professionals, business owners, and so much more, but opportunities need to be provided. Increase social awareness and acceptance of people with disabilities and stop treating us like accommodation is asking too much or that we’re nothing beyond the disability you can see.

Likes /Loves: 

I love skulls, writing, the colour green, and poppies. I live on coffee and am an introvert. I’m fascinated by the macabre, but I’m quite a light-hearted person. My work logo is a skull in a gold crown, inside a teacup and it’s very on brand for me.

Check out Amber Dawn’s erotic storytelling business, Better Lighting Creations: www.betterlightingcreations.com 

Bridgette

A digital painting of Bridgette. A smiling Caucasian woman with long dark brown hair, bangs and black glasses. She wears a coral coloured shirt. The background is a pink and orange polkadot drain with purple underneath.
Bridgette

Please share about yourself, your experience with the disability assistance benefit, and anything else you would like people to know.

I live in Newton, British Columbia, and I have been diagnosed with Bipolar Disorder and am on the high functioning autistic spectrum. So basically, I have been on PWD for quite a while, I have not had a long term job for quite a while and I have been unable to keep a job due to my mental health issues, so I am currently unemployed and I haven’t been employed for probably about ten years now.

So basically, I’m very lucky I’m blessed being about 4% of the population with PWD status who lives in a subsidized unit. Before that I was not and we basically as a single mom with two girls, we struggled a lot because obviously you can’t wear and eat it on the same piece of bread, so you’d have to pick between either buying clothing, or food, or most of it would go to rent. You were constantly struggling between three different things all the time. But most of the time you could get your rent paid but you wouldn’t have enough money for basic necessities, like if you were to get proper groceries, healthier choices, if you wanted vitamins. A lot of the time I was saving up money for things like dentistry, that wasn’t covered by the ministry coverage.  So yeah it really cuts slim into your budget, not having enough money to live on.

And of course accessing their things they would make you feel really bad. Like have you asked your family for money, have you been to the food bank, like they’ll run through this whole long laundry list of things where it’s degrading. It’s like you’d rather go without than ask for help. They say can you ask your family members but sometimes my family members are in a worse position than me. So how can I ask them for money when they don’t have any? And then how embarassing is that to have to admit you don’t have any money, to the people what would have to give you money?

Definitely with the cost of living, the amount of the shelter portion and the support portion that we’re to live on isn’t keeping up with what’s going on. I mean, we’re at 375 dollars a month, but the average place is between $800 or $900 a month. So they say well that’s your shelter portion, so if you phone them for a crisis grant and they say “well what did you spend your money on?” They say well that’s not what your money’s for, it’s to feed yourself, so I say well you don’t understand – If I don’t take it out of my food money I don’t pay the rent and then we end up homeless. It’s like they’re constantly asking “what do you do with all your money?” Well, what do you think I do with my money? I have to pay rent with it.

And now, because of Covid 19, we’ve all been given extra 300 per check, and it’s like night and day. If this doesn’t stay, I don’t know what people are going to do, and I’m one of the ones that’s lucky I’m in an actual subsidized unit. I hate to I think what people are doing out there, we’re working and struggling where we are never mind them.  I feel really bad, I wish it was way more units like this for people. There just isn’t, there’s such a large demand and there’s very little money and whatever is built is his years away. Like I I don’t know what’s gonna happen. I don’t know.

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

A dream for support . . . making dentistry an essential service, not for the rich. I know a lot of people have their teeth pulled out. Perfectly good teeth, because they can’t fix them, and they live in chronic pain, with teeth pain. That’s one, another thing would be to have a permanent increase to the financial checks. Not significantly, but at least could we keep the 300, you know. At least meet us somewhere. You can’t take us back down to eleven hundred and something dollars a month later on. It’s not enough like even if they could keep the 300 that would be great.

I mean to buy a steak, people on ministry do not have money to buy a piece of steak. It’s rare. It’s a rarity having steak in a cart with children. It’s just rare. You have to go for the cheapest, unhealthy options because we have to go 30 days on this money. So whatever we have, we have to stretch it as far as it’s gonna go.

“Oh can we have this money?”  “No, we can’t afford that.” You know, it’s steak. It’s not filet mignon, just a regular piece of steak. I mean, we didn’t have steak when my kids were growing up, just didn’t happen. You know, I can’t put backpacks together and buy school supplies and buy steak. It’s just not gonna happen. It’s just reality, right?  And a lot of people live way below . . . the way they shouldn’t  be living like that. Like mouldy shoes and no jackets on their kids to school – and that’s not right. We’re living in Canada, you know. When you can’t even buy a coat for your kids ’cause you can’t afford it, like the child ends up getting sick, it’s not good. I mean, I hope there are some changes coming. We don’t know with this pandemic. We don’t know anything, but looking forward yeah if we could get an increase in the check that would be great.

Likes/Loves

I love cats and I’m an artist. I love any colour, I’m blue person, and I love yellow, because it represents the sunshine, and teal blue because of the water. I love cats, anything with fur. 

Some of Bridgette’s art: