Independence has never come easy for me—but it’s always been vital. I was born premature in 1989 with undiagnosed dyspraxia, a neurological disorder that permanently affects memory, coordination, and processing speed. Because my development was delayed and I was held back in kindergarten, I heavily relied on my classmates throughout school. I nodded my head to fake that I understood, but wondered why I felt slower than everyone else. My conservative, Catholic parents called me demanding and needy, encouraging me to settle for whatever nice guy I could find to support me one day—but I was adamant that I would take care of myself when I got older.
I was finally diagnosed with dyspraxia in my early twenties. I’d sought a psychological evaluation because I didn’t understand why I couldn’t keep a job. I was tired of failing to make it on my own and going back to live with my parents. Their look-the-other-way approach, frustrated name-calling, and refusal to acknowledge my struggles only made me feel worse. I used alcohol and sex to cope with the abuse. I felt like an outcast—it seemed like my own family didn’t even love me. My older brother committed suicide when I was 11, and I often felt like he was the only one who would have understood what I was going through. Like him, I was an artist who dropped out of school and was struggling to find my place in life.
Before all this, I’d dreamed of being a writer, graduating with a degree in communications, and getting a job at a well-paying magazine. I knew I was talented, and my teachers agreed, but my highly-graded essays couldn’t make up for the fact that I had trouble retaining information. Tests were difficult and held me back, forcing me to drop out of university. But I was determined to not give up. Even as I was failing classes I had already repeated, I decided to become a freelance writer and start my own magazine. I hoped it would allow me to work in my chosen field, use my talent, and become a better route toward achieving financial independence. After all, if I couldn’t hold a job, what good was a degree and thousands more dollars in debt? So, in 2010, I started FLURT, a socially-conscious magazine for young people who wanted to create a better future. I honestly believed that if I worked hard enough I would get it off the ground and would be able to support myself.
But as most entrepreneurs know, success doesn’t happen overnight. I didn’t have any form of stability to fall back on and the stress of living in poverty pushed my health to its breaking point. I moved constantly as I tried and failed to hold the most basic of jobs. As I strived to balance it all, my freelance writing and my magazine were both pushed to the side. In 2010, at age 21, I successfully applied for income support—a shallow safety net for those who are struggling to support themselves—to help me get on my feet. After a few years, I applied for Alberta provincial disability benefits. It’s a more sustainable program for those who are with living with a permanent disability, but also it’s incredibly difficult to get accepted.
The first time I applied for disability benefits, I was rejected. Unfortunately, it was a year before I received my dyspraxia diagnosis and without it I didn’t know—and couldn’t explain—why I couldn’t keep a job. For the following year, I continued to scrape by on income support, feeling hopeless. I felt trapped in the welfare system, scrolling through online “gigs” as a potential long-term way to get out of the hole.
Finally, in 2014, I made it off the waiting list for a $200 psychological evaluation. After two days of cognitive tests, a doctor said that I met the criteria for dyspraxia. It immediately made sense to me. I recognized many symptoms as part of my everyday life: poor visual perception, difficulty remembering things, bad motor skills, and trouble with speech. This lengthy report became the key ingredient to the collection of letters from doctors, social workers and previous employers—as well as the entire contents of my years in therapy—that I would need to get accepted into the disability benefits program. In 2015, at 26, I finally felt I had the support I needed to achieve independence.
After six years of renting rooms in houses where I felt like I had to walk on eggshells, I was able to rent my own apartment long-term. The amount of anxiety I’d felt these past years began to slowly lift, and I started believing that I would be able to feel happy and safe in the years to come. Instead of constantly being worried about how I was going to support myself, where I was going to live, and what I was going to eat, I could focus instead on my getting my freelance career and magazine on track in a peaceful environment that felt like home.
It was this entrepreneurial spirit that brought my partner and me together last year when he struck up a conversation about my magazine. We were instantly attracted to the other’s drive to be independent and fulfil their career goals—me in the magazine industry and him in tech. We agreed early on that we didn’t want to get married or have children, and that work would take the full centre of our lives. Because of this we talked about long-distance possibilities if he had to move for work, and agreed I’d stay here since starting the process of applying for social assistance somewhere else would be both exhausting and difficult. If we wanted to be together, we decided, we would make it work.
But I struggled internally with the difference in our bank accounts. Even though he made five times more than I received from social assistance, I still wanted to pay for myself on dates and occasionally take him out as well. Even though he would cook for me when I ran out of food and let me borrow money until my next pay cheque (which just put me behind the next month), I always found myself in the same position: broke and feeling like our relationship wasn’t on even ground. He’s the most supportive man I’ve ever met, but he didn’t sign up for this and I didn’t want him to.
I was also shocked to learn that if we were to move in together and become common law, I would lose my financial independence. Since my partner earns more than $3,812 a month—the household income limit for a person on disability benefits—I would be forced to give up my social assistance. It doesn’t matter than I earn nowhere near that amount, benefits or not. His income, in the government’s eyes, would count towards my own. Like many people who’ve applied for disability benefits in Canada, trying to find out information like this was difficult and confusing. When I was finally able to meet with my caseworker and sign the papers a few months after getting accepted, I asked for her to explain the cut-off system to me. She responded with a joke about how if I ever met a rich man—well, she didn’t need to finish her sentence.
I was angry. After six years of commuting to meet with countless doctors, therapists, psychologists, and social workers, filling out piles of paperwork, the stress of an appeal, and the damaging effect it had on my mental health, I was now faced with the unfair, impossible choice of financial independence or living with the person I loved. I felt like I’d rewound to the 1950s. I imagined myself at a top-level university that promised a stable, prestigious career, only to have a university professor tell me that once I graduated I needed to decide between a husband and the field I worked in.
Today, all but the most conservative would call that ultimatum outrageous. We understand, as a society, that women have careers not just because they need the money but because having financial independence gives them a sense of purpose and control in their lives. Why did the government assume that, just because I had a disability that affected my ability to work, I’d jump at the chance for a man to take care of me? As much as I tried, I couldn’t shake the question: Can you truly be a modern woman with a disability?
What the government is telling people who are on disability benefits, especially women, is that instead of seeking independence, the better choice would be to find a rich man—or, really, just any man. The Institute of Women’s Policy Research has, after all, declared that women in North America potentially won’t have an equal wage for another 50 years or so—a man doesn’t have to be rich to out-earn us. And, if women without disabilities have a hard enough time making it in a man’s world, I wondered, where does that leave those on disability benefits? I knew there must be more women out there, like me, who imagined a life with someone—only to face a threat to the financial independence they’d worked so hard to achieve. Because having your benefits yanked from under you and then having to rely solely on your partner for your basic needs doesn’t just curb your independence—it destroys it.
As I contemplated the consequences of my relationship, I couldn’t help but think of those women who had forgone their benefits. What happened if they wanted to leave their relationship?
Lola is a 20-something woman living in Alberta with Hashimoto’s Disease, an autoimmune disease that attacks a person’s thyroid. Like all of the women I interviewed, she asked that I give her a pseudonym because of the stigma associated with living with a disability. I can relate. Since I’ve been on social assistance family and friends alike have felt the need to tell me how I’m just not trying hard enough. Because Lola is in a common-law relationship with her partner, she hasn’t applied for disability benefits because he makes too much money for her to qualify. But that doesn’t mean she’s financially stable.
Instead, she works as a server despite “feeling like death” and “starting her day with an arsenal of medications.” Lola has expressed concern about how her partner treats her and her pets—mishandling both when he gets
upset. She’s wanted to leave the relationship multiple times, but she says she keeps forgiving him because he does a lot to help her. When it comes down to it, she believes that her hands are tied and she needs to keep pushing for survival.
Like Lola, Marci (who also asked that her name not be used) is a 20-something woman living in Alberta who has been common-law with her partner for 10 years. Even though she struggles to support herself and lives with bipolar disorder, Marci hasn’t been able to apply for disability benefits because her partner earns over the threshold. While she appreciates her partner’s support, this dependence has taken a toll on their relationship. She says she’s been forced to confront the terrible reality of feeling trapped because there’s no better alternative. When I last spoke to Marci, she and her partner had taken a step back from their relationship. She’s now in the process of looking into reapplying for disability. Like Lola, Marci finds surviving day-to-day hard enough—never mind jumping through the hoops of applying for disability benefits. It took me six years to successfully navigate the system, find the courage to contact doctors, and then to get all the paperwork I needed (and even then I had to appeal because the language in the paperwork wasn’t clear).
I can relate to Marci and Lola, who, despite desperately wanting financial independence, know that sometimes the most viable option is the one that gives you your best shot at survival. Even though I knew living with my parents hurt my confidence and mental health, I didn’t have the resources to leave. Income support allowed me to distance myself from my parents, and disability benefits let me cut them off completely. Having the latter gives me a sense of freedom. I don’t have to worry about relying on anyone else for survival; I can make decisions based on what I truly want. But for those who are still in vulnerable situations, other options are often homelessness—something I’ve experienced as well. And believe me, after a week of sleeping on a gym mat and wandering the street, a warm place to live, even somewhere that’s abusive—well, it isn’t even a question. This makes me sure that fewer women would find themselves in shelters if they were able to have social assistance regardless of their relationship status.
“The government expects people who are common-law to share incomes,” a social worker told me over the phone. And while this sounds like a fine deal if you’re in a relationship where you’re okay with that dynamic, it’s a poor one overall. Many women also want to share a house and start a family, and these extra expenses on one person’s salary exponentially raise the likelihood of living paycheque-to-paycheque—or make such goals simply impossible. Not only does this put all of the pressure on the breadwinner, but it can create a dynamic in which the person with a disability feels like a burden—an awful place to be in a relationship that’s supposed to be based on love and support, and when the rest of the world already underestimates those with disabilities. Even worse, if the relationship doesn’t work out, they’ll have to apply for disability benefits all over again after giving them up.
Of course, I could lie to the government. Like many couples who live together and aren’t on disability benefits, I could say I’m living with a roommate or have my partner take over the lease to avoid tax deductions. But I’m not going to do that. Lying to the government just adds to the stigma that people on social assistance are lazy and misusing people’s tax dollars. After all the work I’ve done to get to where I am, I’m not going to risk having my financial independence taken away. Instead of the Alberta government giving people no other option than to try to get around the system, it should take a hard look at its old-school views and remember that women are equal to men. Women with disabilities shouldn’t have to worry about losing their benefits because of how much their common-law or married partners earn.
Marci says that she has no idea what the future holds. She’s scared, and like me, the lack of stability and support has only made her mental health worse. She believes she’ll either get some kind of support and be able to finally focus on her needs—or she won’t. It feels like a gamble, and if she loses, she’ll have to continue to struggle with part-time work and stay in her relationship for survival instead of love. “Not every couple shares money,” she says. “The people applying for disability are not the ones living in mansions with happy, healthy marriages. The people applying are the ones who need it. The government shouldn’t be able to say some disabilities and living situations are more or less valid than others.”
I’m not sure what the future holds for me either. I currently live a life full of purpose while working on my freelance writing and magazine, and my partner and I are happy living separately for now. But maybe one day we’ll get tired of making the trek to and from each other’s apartments and decide we want to share the same space. Whether or not he takes a job outside Alberta, we’ll always have to live knowing there’s going to be distance between us. It’s true that respecting the others’ need for independence is a key component in what makes our relationship so great, yet having that independence forced on us isn’t what I expected when I told myself that I would one day take care of myself.
As a woman with a disability, I acknowledge that I’m lucky to have disability benefits in the first place; it’s incredibly difficult to qualify. Speaking out about the flaws within the system comes with a fear of biting the hand that feeds me. But progress has been made to increase disability benefit amounts and to raise awareness of how a person can afford to eat on social assistance. More and more women are writing about what it’s like to live with a disability to break the stigma that we’re lazy and misusing tax dollars. I’m happy to be one of them, and I feel confident that if we keep working to tell our stories we’ll come to create change. We need to keep fighting for our rights as citizens—and we can do it. After all, we’ve felt what it takes to overcome so many obstacles already.
AMANDA VAN SLYKE has written for publications such as VICE, Alternet, and xoJane on important issues like sex, disability, and addiction. She also runs FLURT, a socially conscious magazine for young people. Her goal is to produce an inclusive, non-photoshopped magazine for youth and replace the negative media we have now. Visit www.flurtmag.com.