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: