“We need to take care of each other, and that's what this program was helping to do:” Disabled women’s experiences of the Ontario Basic Income Pilot

« Nous devons prendre soin des gens, et c’est ce que ce programme faisait » : Expériences des femmes handicapées ayant participé au projet pilote portant sur le revenu de base en Ontario

Chloe Halpenny, MSc, MPhil
PhD Student, Kinesiology & Health Studies
Queen's University

chloe [dot] halpenny [at] queensu [dot] ca

Abstract

From 2018 to 2019, some 4,000 Ontario residents received money as part of the Ontario Basic Income Pilot (OBIP), a basic income experiment that ran in three municipalities across the province. Drawing on interviews with 15 disabled women who participated in the pilot, this paper mobilizes women’s stories about their lives before, during, and after basic income to critically explore income security policy through a feminist disability lens. Women’s experiences of OBIP reveal important insights about the complex relationship between poverty, debility, impairment, and disability, as well as how targeted income support programs sustain or challenge ableism. This study’s findings suggest that while basic income offered material benefits to disabled women that supported them to survive in an ableist world, it is not inherently immune to the challenges characterizing other income security programs (e.g., the Ontario Disability Support Program, or ODSP). Despite this, women’s stories offer a glimpse at how by offering a more adequate and less conditional income to participants, OBIP created space to practice resistance and imagine different disability futures.

Résumé

De 2018 à 2019, quelque 4 000 personnes résidant en Ontario ont reçu de l’argent dans le cadre du Projet pilote portant sur le revenu de base de l’Ontario, mené dans trois municipalités de la province. Les histoires de vie avant, pendant et après l’accès à un revenu de base pour 15 femmes handicapées ayant participé au projet pilote ont été recueillies par le biais d’entrevues. Cet article mobilise ces récits pour explorer de manière critique les politiques relatives au soutien du revenu dans une perspective féministe axée sur le handicap. Les expériences des femmes dans le cadre du projet pilote révèlent des informations importantes sur la relation complexe entre la pauvreté, la fragilité, la déficience et le handicap ainsi que sur la manière dont les programmes ciblés de soutien du revenu maintiennent ou atténuent le capacitisme. Les résultats de l’étude suggèrent que, même si le revenu de base offre des avantages matériels aux femmes handicapées qui les aident à survivre dans un monde capacitiste, ce programme n’est pas intrinsèquement à l’abri des problèmes observés au sein des autres programmes relatifs à la sécurité du revenu (par exemple, le Programme ontarien de soutien aux personnes handicapées, ou POSPH). Malgré tout, ces histoires de femmes montrent qu’en offrant un revenu plus adéquat et moins dépendant de diverses conditions, le projet pilote a créé un espace de résistance permettant d’imaginer différents avenirs en lien avec le handicap.

Keywords: Basic income; Critical disability studies; Disability policy; Feminism; Ontario; Poverty; Social assistance; Qualitative inquiry; ODSP

Mots-clés: Revenu de base; études critiques sur le handicap; politiques relatives au handicap; féminisme; Ontario; pauvreté; aide sociale; étude qualitative; POSPH



Introduction

In late 2017, the first of over 4,000 Ontario residents began receiving money through the Ontario Basic Income Pilot (OBIP), a social policy experiment trialing a novel approach to poverty reduction. Launched by the former Liberal provincial government, the pilot enrolled participants who were between 18 and 64 years of age, resided in one of the chosen test sites (Hamilton area, Lindsay, or Thunder Bay), and reported an annual income of less than $34,000 or $48,000 for singles and couples, respectively. Reflecting Canadian conceptualizations of basic income as a poverty alleviation measure, the pilot adopted a negative income tax design that specifically targeted low-income individuals, in contrast to universal proposals that would distribute payments to everyone regardless of income level. To this end, the pilot’s benefit amount was based on 75% of the Low Income Measure (LIM), with monthly payments equating to an annual income of up to $16,989 for individuals and $24,027 for couples. Disabled participants received an additional monthly top-up of up to $500; further, all payments were reduced by $0.50 for every additional dollar of employment income. While the pilot was designed to run for three years, a newly-elected Progressive Conservative government announced its premature cancellation in July of 2018. Data collection efforts were halted immediately, with final payments administered in March of 2019 (Ministry of Children, Community and Social Services, 2017; Segal, 2016).

This article draws on interviews with 15 women who were enrolled in the Ontario Basic Income Pilot, and who identified as disabled, described experiences with impairment, or had previously accessed disability-targeted income support programs. Bringing together narrative methods as well as critical and feminist disability scholarship, I mobilize the stories women shared about their lives before, during, and after basic income to explore several questions: In what ways does disability shape or is shaped by the receipt of targeted income assistance? How is ableism produced, sustained, or challenged through income support programs? Finally, what about a basic income, if anything, interrupts or subverts these trends?

There is some evidence suggesting attention to disability in the design and delivery of OBIP. Finding a Better Way, Hugh Segal’s (2016) discussion paper commissioned by the former provincial government to inform the pilot, notes that “poverty hits Ontarians with disabilities…the hardest” (p. 17). Further, it recommends that any pilot should avoid reproducing the policing and surveillance of existing income support programs, as well as offer a more generous benefit rate to disabled recipients in recognition of higher living costs (Segal, 2016). These considerations, while important, mirror the broader basic income literature in its limited engagement with questions of sickness, impairment, debility, and disability.

While there is a growing body of conceptual and empirical research about basic income, including through a public health lens (e.g., Forget, 2011; Gibson et al., 2020), explicit attention to disability and related concepts remains limited. Bickenbach (2014) draws on basic income as an example in his consideration of Universal Design in social policy. Grappling with the advantages and drawbacks of universalistic versus targeted disability policy, he ultimately concludes that while a basic income consisting of uniform payments to disabled and non-disabled recipients alike “is a paradigmatic universalistic programme with respect to poverty (and perhaps some other conditions of marginalization), it is not universalistic for disability” (Bickenbach, 2014, p. 1325). In contrast, Mays (2016) presents basic income as a non-disabling and potentially-transformative alternative to neoliberal disability policy. However, basic income scholarship often reduces disability to questions of benefit rates and interactions with other disability-focused programs (Green et al., 2020; Piachaud, 2018; Tedds et al., 2020). In one of the few monographs dedicated to basic income and disability, Mays (2020) suggests that “while attention has been drawn to other structural dimensions of age, gender and locality in basic income debates, the disability dimension has received limited attention” (p. 7). Mays’s (2020) work, while novel, focuses on the Australian context and reflects minimal engagement with disability scholars or activists, relying instead on theories of distributive justice and social citizenship to advance its case.

Moreover, despite Mays’s (2020) accurate assertion that basic income research is increasingly attentive to gender (e.g., Baker, 2008; Cantillon & McLean, 2016; Zelleke, 2011), feminist basic income research has also largely neglected meaningful engagement with disability in its analysis (Halpenny, 2019). For instance, Baker (2008) raises some valuable points in an article asking whether feminists should embrace a basic income, although these are cursory and ultimately relegated to a footnote:

How should we design basic income in relation to equality for disabled people?…One way or another, just institutions must provide for the additional costs of impairment, which are exacerbated by disabling environments. Whether formally incorporated in a disabled person’s basic income or treated as a supplementary payment, how decisions would be made about eligibility and payment levels, whether they would be tied to particular uses, what conditions determine whether they would be controlled by the disabled person or by a trustee, etc. are all important issues (p. 4).

Recent work by Sally Kimpson is exceptional in its thoughtful and nuanced analysis of basic income, gender, and disability. Kimpson (2021) draws on rights-based frameworks to critically assess existing and potential future disability income support programs in Canada, with basic income being among the options she explores. Ultimately, she gestures to basic income’s potential in reducing bureaucratic oversight, facilitating self-determination and social inclusion, and alleviating poverty for disabled women and gender-diverse individuals.

Contributions such as Kimpson’s build on a broader body of literature focused on Canada’s income security policy infrastructure (to which her work has also contributed; see for example Kimpson, 2020), which includes a patchwork of federal and subnational programs. In Canada’s most populous province of Ontario, Ontario Works (OW) and the Ontario Disability Support Program (ODSP) constitute the two primary provincial programs targeting low-income residents. Beyond the income threshold, those applying for ODSP must demonstrate disability or impairment through an adjudication process. At the time of writing, single OW and ODSP recipients can receive up to $733 and $1,228 monthly for basic needs and shelter, respectively. Eligible ODSP recipients may also receive prescription drug coverage, basic dental and vision benefits, and support for the cost of medical supplies (Ministry of Children, Community and Social Services, 2020, 2022).

Ontario’s social assistance programs, especially ODSP, are an important backdrop for this study and serve to position OBIP within a wider policy context. While a more fulsome description and analysis of OW and ODSP are out of scope here, I seek to draw from and build on existing scholarship dedicated to exploring these programs through a critical lens. The available evidence illuminates the harsh, punitive, and inadequate nature of Ontario’s social assistance programs; their negative impacts on the lives of poor, disabled, and otherwise-oppressed individuals; the harmful and ableist ways in which they define and categorize marginalized and disabled bodies; and the neoliberal and retrenchment-focused policy context in which they have come to exist (Abdillahi, 2022; Chouinard & Crooks, 2005; Lightman et al., 2009; Maki, 2011; Smith-Carrier et al., 2017, 2020; Tam et al., 2021). As such, I situate my work both alongside that of these scholars as well as within the basic income literature.

This article proceeds as follows. Having summarized the policy and literature contexts of this study, the next section outlines my theoretical and methodological approach. The subsequent analysis is organized temporally, and explores the stories disabled women shared about their lives before, during, and after their participation in the Ontario Basic Income Pilot. I conclude with a discussion about the implications of these findings, including what women’s stories illuminate about disability, poverty, and policy responses in Canada.

Approach & methods

This paper qualitatively explores how women’s experiences in the Ontario Basic Income Pilot shaped and were shaped by impairment, debility, and disability. Drawing on data from a larger research project that explored basic income through a feminist lens (Halpenny, 2019), I focus here on interviews with 15 women who identified as disabled, described experiences with impairment, or had previously accessed support through either ODSP or the Canada Pension Plan disability benefit (CPPD).

Minich (2016) posits critical disability studies as both a discipline and justice-motivated methodology that “involves scrutinizing not bodily or mental impairments but the social norms that define particular attributes as impairments” (p. 3). With this in mind, my engagement with critical disability studies reflects a commitment to resisting binary definitions (e.g., impairment/disability, medical/social, etc.) and attending to ableism as a form of systemic oppression that “assign[s] value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness” (Lewis, 2022; Goodley et al., 2019; Meekosha & Shuttleworth, 2009). Meanwhile, feminist disability scholarship moves me to embrace the complexity of navigating corporeal realities alongside the wider contexts in which they occur, as well as “retrieve dismissed voices and misrepresented experiences” (Garland-Thomson, 2005, p. 1557) to reveal (and critique) how public policy shapes disabled women’s day-to-day lives (Kafer, 2013).

Narrative methods inform my analytical approach for this study, taking inspiration from Malacrida’s (2010) use of narrative inquiry to “generate an emancipatory knowledge about disability, gender and oppression” (p. 675) in the context of income support policy in Canada and the United Kingdom. Within disability studies, narrative inquiry is well-placed to amplify disabled peoples’ stories in their own words, offer narratives that counter hegemonic perspectives of disability experiences and identities, and “illustrate the importance of social barriers…in shaping the lives of disabled people” (Thomas, 1999, p. 30; Goodley & Tregaskis, 2006; Nelson, 2001; Smith & Sparkes, 2008). In alignment with feminist methodological approaches, I treated interviews as the “co-construction of meaning” (Hesse-Biber, 2007, p. 128), focusing primarily on individuals’ understanding of and experiences in OBIP. In line with a narrative approach, the proceeding analysis relies primarily on longer quotes from these interviews, reflecting a commitment to preserving women’s narratives and the meanings they ascribed to them wherever feasible.

Participants were recruited through various means, including social and traditional media as well as referrals from community-based partners and other interviewees. Recruitment reflected a non-probability approach to sampling, with the only inclusion criteria being membership in the pilot’s treatment group. The duration of interviewees’ participation in OBIP and their benefit amounts varied within my sample, depending on when they enrolled and their taxable income in the previous year. Among the 15 participants whose experiences inform this paper, all self-identified as women, were located across the three pilot locations (Hamilton/Brantford, Lindsay, and Thunder Bay), and represented a range of ages. While not explicitly asked, no participant self-identified as 2SLGBTQ+, Indigenous, or racialized during interviews. Interviews lasted between 40 and 130 minutes and were conducted in April 2019 via phone, Skype, or in-person. All participants provided informed consent for their participation. This research received ethical approval from the University of Cambridge’s Politics and International Studies Ethics Committee.

Table 1. Participant summary

PSEUDONYM PRIOR BENEFIT(S) DISCLOSED DEBILITY/IMPAIRMENT/DISABILITY
JANET ODSP Digestive Problems
DEBORAH ODSP Fibromyalgia, mental illness
LINDA ODSP, CPPD Diabetes, autism
MELANIE ODSP, CPPD, OW Schizophrenia
DANIELLE ODSP, CPPD, OW N/A
ALEXIS ODSP Mental illness, hearing loss, knee problems
TANYA ODSP Digestive problems
SHANNON ODSP Chron's disease
LOUISE ODSP, OW Fibromyalgia, cancer
TIFFANY ODSP Anxiety, depression, fibromyalgia, back/knee problems
DOROTHY ODSP, CPPD Back problems
MARTINA ODSP, OW Fibromyalgia, bipolar disorder
RACHEL ODSP, CPPD Post-traumatic stress disorder, depression
JASMINE None Post-traumatic stress disorder, mental illness
KATHRYN ODSP, OW Panic disorder

Table 1 provides an overview of the 15 participants in this study, including pseudonyms used in the subsequent analysis, previous receipt of other federal or provincial benefit programs, and experiences with debility, impairment, or disability, as characterized in interviews. I include the latter mainly to highlight the diversity of participants’ experiences, as well as offer additional context to the narratives highlighted in the remainder of this paper. My varying usage of debility, impairment, disability, and related terms reflects their fluid and overlapping nature along with my resistance in defining them. Further, while I attempt to use terms that reflect how participants spoke about themselves, I frequently rely on the phrase “disabled women” as a more concise and readable alternative. Ultimately, this is an imperfect approach to summarizing the rich complexity of women’s experiences, and may not necessarily align with their self-identification.

My experiences and social location intersect with those of my participants in some ways and differ in others. I come to this research as a woman and PhD student with lived/living experience of neurodivergence and mental illness, and without firsthand experience of poverty or income insecurity. My approach is further shaped by my activist and advocacy work outside the academy. In the time since initially conducting these interviews, I have become deeply engaged in basic income and anti-poverty organizing, including through co-founding a national grassroots youth group to this end. Through these efforts, I continue to remain in close contact with many of the same community gatekeepers and participants who made this study possible to begin with. In navigating my roles and responsibilities as both an early-career academic and activist, I have come to understand these endeavours as deeply connected, and am increasingly committed to “the breaking down of boundaries between the traditional identities of ‘academic’ and ‘activist’” (Routledge & Derickson, 2015, p. 397). More than measures of academic success or the pursuit of any single policy idea, I see my primary accountabilities in this work to those whose lives are negatively impacted by poverty, ableism, and intersecting forms of oppression.

Before: “I realized I would never escape poverty”

I began every interview by asking women about their lives prior to the Ontario Basic Income Pilot. This often elicited detailed and thoughtful responses, providing valuable context to women’s experiences with and understanding of OBIP. Linda began her story by sharing how she ‘became’ disabled, and, by extension, poor:

I started to feel unwell, and I got sicker and sicker. They didn’t know what was happening. Really severe fatigue was setting in…I was declared officially disabled…It was while receiving some mentorship around starting your own business that I did a cash flow statement and realized because of my disability and the number of hours I could actually work, I would never escape poverty.

Linda and other women rarely claimed disability on their own terms. Instead, they were labelled disabled or required to identify as such to access necessary supports or care. While some women saw this as nothing more than personal circumstance or (bad) luck, Deborah’s account reveals the explicitly-gendered lens through which she understood her own condition:

Along the way the stresses of having childcare, and who’s going to look after the kids…I’m down with cancer. I lose a job over treatment. I’m going through medical issues…What comes first? I don’t know if the mental health came first or the other disabilities…Just the constant pressures…

Prior to basic income, women’s experiences of disability and poverty were deeply intertwined. Some women who had previously earned income through employment became sick(er) and could no longer maintain full-time work, while others defined impairment as an unavoidable consequence of living in poverty. Often, both these experiences were true, and mutually reinforcing in nature. Jasmine spoke to this along with the disabling effects of exposure to gender-based violence, which are also echoed within the literature (Rees et al., 2011):

I think fundamentally the poverty that I have lived in for the last 10 years, there are numerous factors [contributing to it]…One of those factors is 100% the fact that I’m a woman, and the fact that I’m also a survivor of sexual assault and I consequently have PTSD and numerous…mental health issues around that that affect my ability to work.

Eventually, every woman besides Jasmine sought support through ODSP, Ontario’s provincial income assistance program for low-income disabled residents. This ‘decision’ was most frequently described as devoid of agency and a last resort: as Tiffany put it, “I had no choice but to go on the system.” For Shannon, fulfilling her lifelong dream of parenthood made applying for ODSP essential: “I adopted my son, so I made a conscious decision to choose life over money. Because of my illness, I can basically do one thing at a time, and I chose him over earning lots of money.”

Applying for ODSP demanded significant time and emotional labour from women already negotiating poverty, stress, and illness. For some, “the wait and the wait and the wait” (Kathryn) and “the appealing and the appealing and the appealing” (Martina) resulted in applications that took months or even years to process. Kathryn and Martina’s experiences are borne out by other evidence. Just a few years following the introduction of ODSP in 1998, the Income Security Advocacy Centre published a report condemning the program’s application and adjudication processes as inaccessible, overly complex, and “seemingly designed to ensure failure” (Fraser et al., 2003, p. 1). More recently, while just over 40% of new ODSP applicants in 2018-2019 were found inadequately disabled at the cursory review stages and were therefore rejected from the program (Office of the Auditor General of Ontario, 2019), nearly 60% – or just over 3,000 – of ODSP appeals brought to Ontario’s Social Benefits Tribunal that same year were ultimately granted (Tribunals Ontario, 2022). Louise’s account further spoke to this troubling trend:

When I originally applied for ODSP, it was like sitting in front of a warden…They go into such in-depth personal information which they really don’t need. It was degrading, completely degrading. It made me feel like I wasn’t a mother…It made me feel like I was less than. They almost shamed you…They refused me for seven years. On the seventh year, I had enough. I said, ‘I’m going up against them in judicial.’ They bring you into this fake court thing and they have a doctor there that’s supposed to be a specialist…They’re the ones that decide, and they don’t even know you…I swear my medical file was at least 3 to 4 inches wide. They had all that information, yet they were still denying me my disability.

Louise’s account positions disability as a category that women are required to occupy to become eligible for state income support. However, merely claiming this label is rarely enough: instead, disability becomes a contested terrain where medical professionals and caseworkers hold the ultimate power to decide who is ‘disabled enough’ to deserve assistance. Like Louise, several women had relied heavily on doctors or felt compelled to divulge what they felt was overly-personal information to provide adequate ‘proof’ of their disability to access ODSP. As Mays and Fisher (2019) point out, the ongoing use of “narrow and contradictory definitions of disability for income support and social services eligibility” (p. 517-518) as evidenced here remains in direct tension with the socio-political shift away from conceptualizing disability as an individual, medical problem. Meanwhile, in using the term “warden,” Louise conjures images of institutionalization – specifically prisons and jails – to characterize her experience applying for, being rejected by, and appealing the decision of ODSP. Together, these accounts support an interpretation of ODSP as effectively upholding the individualization and medicalization of disability, including through the program’s reliance on “biomedical markers of difference” (Smith-Carrier et al., 2017, p. 1583) as integral to its eligibility criteria.

Women’s struggles with ODSP began, but did not end, with application and eligibility. Upon accessing ODSP, “trying to stay on benefits” (Danielle) became a complex endeavour for those who received additional income through employment or other government sources. In the past, some women had suddenly and unexpectedly lost access to the enhanced health benefits offered through ODSP, such as prescription coverage or dental care. Many perceived ODSP’s rules as infantilizing and paternalistic, and felt constrained by the strict earnings threshold and clawback rate: as Shannon declared, “I’m almost 58 years old. I don’t want to talk to my parents about how much allowance I can get.” Meanwhile, Rachel illustrated the irony of a program that purports to support disabled people, but in her case had disabling effects:

Every time I interacted with ODSP I would go into basically a three-day depression where my body hurt, I couldn’t move…I was triggered…You are directly impacting me, wounding me to the point where I’m not going to be functional for my family. My daughter has to see me lethargic and in pain and crying and not even showering. I can’t even describe how it impacts me and the damage that it felt to my soul.

Women were also affected by the stigma associated with ODSP, highlighting stereotypes of the “welfare bum” (Tanya) and judgment from family, friends, and neighbours. Accounts such as these demonstrate the dominance of productivist norms within society (Weeks, 2011), along with disabled peoples’ volatile position in the discursive battle between the ‘deserving’ and ‘undeserving’ poor (Baumberg Geiger, 2021). Those who were not necessarily perceived as sick or disabled by others were especially vulnerable to these perceptions, Louise among them:

There are some people that used to look at me and say, ‘there’s nothing wrong with you, you look okay.’ Well, what they don’t realize is that I have fibromyalgia; I have multiple myeloma which is cancer in the bone…You don’t see that…I think women are the ones that get the brunt of it: you’re lazy, you have kids, you’re staying home. I remember when I went on ODSP, all the parents at my kids’ school are all married and have two incomes coming in, and I’m alone. It was always critical of me…The single mother thing is a hard thing to pull off, let’s put it that way.

For women receiving ODSP, class, gender, and disability-based oppression collide to produce distinct experiences of marginalization and injustice. Women framed this as having direct and harmful effects on their confidence and self-esteem: in Tanya’s words, “it took me a long time – a very long time – to feel good about myself on disability [ODSP].” In this context, it is worth drawing attention to the ways that the women I spoke with actively resisted ableism, classism, and sexism in their day-to-day lives. For instance, women acknowledged the rich contributions they had made to their communities outside of the paid labour market, shared stories of confronting negligent or abusive service providers, and challenged deeply-rooted stereotypes about those in poverty. Despite this, it is difficult to deny the prominence of struggle in women’s stories of their lives prior to basic income. This was the context in which many women first heard about a new pilot project coming to their community.

During: “I didn’t have to justify surviving”

Women’s lives prior to the Ontario Basic Income Pilot played an important role in framing and contextualizing their experiences during it. 14 of the 15 women I spoke with were former ODSP recipients, and widely perceived basic income to be everything that ODSP was not: a stable, reliable, unconditional, and more dignified source of income. As Shannon described:

For the first time in 20 years I didn’t have to answer to anybody about how to spend it. I didn’t have to justify surviving, and that was a huge relief and a huge change from ODSP. Honestly, I remember that very first cheque and a couple of my friends calling and saying, ‘well, who do we report our income to now?’ And I said, ‘you know what, I don’t think we have to. I think we can just pay the bills.’

In her account of the stark differences she had observed between OBIP and ODSP, Shannon reveals something sinister about the logic of the latter program. The need to “justify surviving” – a sentiment echoed by other women I interviewed – points to an underlying assumption that ODSP as an institution does not expect or even want its recipients to survive.

Martina also juxtaposed her experiences of OBIP and ODSP, framing basic income as a means of distancing herself from controlling, punitive, and invasive state mechanisms:

It was nice to get an income without having to jump through all the hoops that you have to jump through when you’re on ODSP and all the rules you have to follow and all the fear that that engenders…Every time you get a brown envelope in the mail you’re afraid to open it because you’re just afraid, what’s this going to be? Is it going to be bad news from ODSP?...In addition to just having more money every month, which of course relieves stress, just knowing that you didn’t have Big Brother looking over your shoulder the whole time was a stress relief…I have never broken an ODSP rule…But it was still nice not to be worried about getting a letter, ‘come on in, we’re reviewing your file…’

Further, many women perceived differences in the pilot’s approach to assessing disability for the purposes of eligibility, framing this as superior to that of ODSP. Quoting Martina again:

It was nice to not have to prove that I was disabled to get the basic income. I was low-income and that’s the only thing they really needed to know. They didn’t need to know how sick I was, and what my illness entailed, and what I could and couldn’t do, all the things you have to prove with ODSP.

Writing about how disability is categorized on tax and social assistance forms, Abrams (2015) proposes that “were a more just and effective system to replace the status quo, it would have to overcome the systematic bias against persons with the ‘wrong’ kinds of disabilities” (p. 19) that elude inscription. Importantly, while Martina and others widely heralded OBIP as far less invasive than ODSP, the limited publicly-available information about the process of applying for the pilot (e.g., Segal, 2016) suggests that its approach to assessing disability largely mirrored that of ODSP. Thus, while OBIP may have mitigated women’s ongoing need to demonstrate debility, impairment, or disability to access supports, it arguably did less to substantively challenge how income security policies and institutions manage disability through categorization, inscription, and processes of il/legibility.

Beyond its other design features, OBIP’s benefit rates meant that for many women, participating in the pilot represented a significant increase in income. Janet, who earned approximately $1,900 monthly (~$22,800 annually) as part of the pilot, described feeling “shocked, speechless” when she learned that her income would nearly double: “I was like, ‘a month?’” Despite bringing disabled participants only modestly above the poverty line, this was often a stark improvement compared to women’s previous situations. While framed positively in women’s accounts, this equally raises questions about the level of government support ODSP and OW recipients have been conditioned to expect through years of state-sanctioned poverty. Still, income security was a central theme in women’s experiences of OBIP. Linda highlighted the significance of this:

[With basic income] if I cannot work because of disability, it’s not going to mean that I’m not going to eat…There’s a flexibility with the additional income [that] I think unless you’ve lived with really nothing, you don’t understand the lack of flexibility you have in your life without that little extra…The options [others] have when they encounter a crisis are not the same options I would have.

Women described spending OBIP payments in countless ways, including saving for retirement, buying new bras and underwear, and making purchases to manage the symptoms or effects of illness or impairment (e.g., accessible transportation, appropriate food). Others used their basic income to pay for prescription medication, vitamins and supplements, or medical supplies that were either not covered or challenging to access via ODSP: “Instead of having to argue and fight with the caseworker over a new device or batteries or whatever, we could just go in and pay for it ourselves” (Alexis). While framed as empowering in the moment, Alexis’s account also prompts questions about the implications of public supports and services being increasingly commodified and/or privatized, along with the potential hidden costs of individuals shouldering financial burdens that were once borne by the state. In Melanie’s case, buying new bedding improved her quality of sleep, in addition to helping mitigate some of the other symptoms she experienced that were associated with schizophrenia:

I bought a latex pillow…My sleep was the first thing I noticed that was better. Sleep is another thing, if I don’t get at least 6 or 7 hours of sleep, then my hallucinations get worse. So I noticed that [got better], and I noticed less anxiety right away.

From better sleep to fewer doctor visits to reduced instances of self-harm, women often drew connections between basic income and their own health and well-being. Martina, like others, emphasized the relationship between poverty, stress, and debility and impairment:

I have fibromyalgia, and it feeds on stress. The worse my stress gets, the worse my pain gets, the worse my sleep gets, the worse my fatigue gets, the worse everything gets. So not having to worry about money constantly eased my stress level…I’m bipolar too, so even when my mania is under control, I still suffer from depression. Even the depression lessened a little bit because I didn’t have the stress and anxiety that was feeding it all the time. Some people certainly noticed that I seemed lighter to be around. I think that I just emanate these waves of stress when I’m on ODSP because you never stop thinking about money.

By depicting income (or a lack thereof) as having a direct and palpable influence on her day-to-day function, Martina framed poverty as disabling. While more money did not ‘cure’ her fibromyalgia or bipolar disorder, being less poor did render her less impaired. Indeed, many women unequivocally framed mental health improvements, reduced stress, and pain relief as among the most impactful outcomes of their participation in the pilot. Reading this through a disability lens, I posit that interpreting these accounts as evidence of cure-focused ableism overlooks some important points. Rather, stories like Martina’s reflect an acknowledgement that low-income individuals’ disproportionate exposure to debility, impairment, and disability-based oppression is both avoidable and unjust. To quote Puar (2017), “poverty itself may well be thought of as a form of debilitation” (p. 73).

At the same time, women also told stories about the way basic income allowed them to be more unapologetically – or at the very least, more comfortably – sick or disabled. For example, several shared that they felt less isolated during their participation in OBIP, including Kathryn:

I got to spend more time – as weird as this even sounds – with my kids. Going to the park for picnics, which was kind of not my norm, going down to the river to drink coffee. When you’re on disability [ODSP], you can’t really afford the coffee.

For others, basic income offered the opportunity to engage in paid work that was more meaningful and accessible to them. Such was the experience of Tanya, who pursued entrepreneurial endeavours during the pilot:

It’s a home business, because I can work around my limitations. I make my own hours, which means when I’m not well, I don’t work, and when I am well, I do work…I have workshops and I run them, but most of the time they’re from home, too. So if I have a flareup, then I can always excuse myself and I’m still in my own home…Making my own hours, having my own business, it worked around my limitations and my illness…I felt great. I felt great about working.

Tanya’s account might reasonably be read as a claim to crip time as a resistant and (re)imaginative orientation that “refuses to define itself in terms of either the ideal or the average” (Samuels, 2006, p. 6). Rather than resigning herself to a 40-hour office job, her “‘eccentric economic practices’ challenge the normative modalities that define time, such as productivity, accomplishment, and efficiency” (Kafer, 2013, p. 40). For Tanya, however, these “eccentric economic practices” were unattainable without some degree of income security.

Indeed, women’s stories illustrate a basic income’s compelling potential in providing the necessary material stability for recipients to resist compulsory able-bodiedness/able-mindedness (Kafer, 2013) along with normative ideas about work and productivity, should they choose to do so. Some opted to withdraw from the labour market altogether, for instance Alexis’s “decision [that] it was best to not work and [instead] just focus on getting my mental health stable.” Others saw basic income as an opportunity to engage in more volunteer or emotional labour, which was easier to justify when their basic needs were assured. This was how Shannon framed her voluntary contributions while part of the pilot: “My time to the community increased, because I didn’t have to worry about hearing, ‘well, if you can volunteer, why can’t you just go get a job?’”

Shannon’s reflections on her volunteer work over the course of the pilot draw our attention to another important consideration: the relationship between basic income and in(ter)dependence. While autonomy and independence were frequently animated as evidence of the pilot’s effectiveness, the experiences of Shannon and others suggest that these narratives fail to capture the whole story. The women I spoke with pointed to the array of ways in which basic income offered them the stability to pursue “a diversity of care tactics” (Piepzna-Samarasinha, 2022, p. 154), including caring for sick relatives, taking a friend out to lunch, volunteering in a community garden, or simply offering a neighbour an empathetic ear. These alternative narratives position the income security offered via OBIP as a powerful catalyst for advancing collective care and interdependence, as well as for challenging normative measures of progress at both the individual and societal levels (Fritsch, 2010; Piepzna-Samarasinha, 2022).

Despite this, women’s experiences with OBIP were not exclusively positive. The transition from ODSP to OBIP saw several women temporarily lose prescription coverage; others highlighted dental benefit cards that were consistently late. Their accounts also revealed mixed opinions about whether OBIP was vulnerable to the same harmful and negative stereotypes associated with ODSP. While some saw basic income as fundamentally different in this regard, Dorothy was less certain:

It was just as hard on the pilot as it was on ODSP, just different comments. If you’re on ODSP it’s, ‘oh, you’re faking, you can work…’ Automatically thinking that you’re not disabled unless you’re in a wheelchair or missing both limbs…With the basic income, it was, ‘oh, money for nothing, how come you’re getting it and we don’t get it, it’s not fair, they shouldn’t give it to some and not others…’ Others saying, ‘oh yeah, the beer store will be busy, the crackheads are going to be happy this week,’ things like that…The words change, but the intent and what’s behind them is the same.

Although her experience with basic income was positive overall, Dorothy ultimately perceived ODSP and OBIP to be two sides of the same coin. Whereas ODSP enacted a form of ableism that rendered only those with visible, permanent, and physical disabilities worthy of support, OBIP merely facilitated a new (if not subtler) flavour of oppression, buttressed by an ethic of boundless productivity and discrimination against those with substance use disorders. As the line between disabled and non-disabled becomes increasingly blurred, Puar (2017) contends that “there is no such thing as an ‘adequately abled’ body”; rather, “all bodies are being evaluated in relation to their success or failure in terms of health, wealth, progressive productivity, upward mobility, enhanced capacity” (p. 182). In this context, while basic income may have alleviated some of the symptoms of systemic ableism, its capacity to resist the type of corporeal evaluation Puar describes may be more tempered. For most women, however, the pilot’s biggest downfall was its cruel and unexpected demise.

After: “When do I get to take care of myself?”

Former Minister of Children, Community and Social Services Lisa MacLeod announced the premature cancellation of the Ontario Basic Income Pilot on July 31st, 2018, less than one year after the pilot’s first payments had been administered. Long before this announcement, women had begun to courageously author hopeful and optimistic stories about what their lives would look like post-pilot. Over the course of my interviews, however, it became clear that for many, these stories were being fundamentally rewritten – if not erased entirely.

When I asked interviewees what they anticipated for life after basic income, I was met with accounts of uncertainty, anxiety, and a deep sense of loss. Women had already cancelled appointments they could no longer afford, reconnected with their ODSP caseworkers, and stockpiled frozen or canned food to sustain them in the months ahead. Several expressed worry that they would no longer be eligible for ODSP or other income-tested benefits, owing to their temporarily-higher income in the preceding year. For Tanya, the pilot cancellation posed swift and severe consequences for both her business and her health:

It started with not being able to sleep, because I was worrying. How am I going to pay the mortgage, and how am I going to do this, and how am I going to do that?...I put so much money towards the business and had this line of credit that I had to pay off, which the money would no longer be there…I went probably about five days of not sleeping. And then I started into what I knew was a panic attack…It went on for four days and four nights, and then I checked myself into the hospital.

If women’s stories about life before and during the pilot illustrate the debilitating and disabling effects of poverty and ODSP, the same can be said of OBIP’s cancellation. This was particularly evident given the hope expressed by many women that by the end of the pilot, they would be either too healthy or wealthy to return to ODSP: as Alexis conveyed, “most of us had plans that when the pilot finished we wouldn’t be going back to social assistance. We never anticipated having to worry about that again.” In light of this, women were forced to go “back to jumping hoops” (Shannon) or “back to the institution” (Louise), facing exposure to the same harms from which they had had a reprieve. For Tanya, confronting a future that largely mirrored her past was devastating:

I had to go submit like 25 pieces of documentation to get back on to ODSP from basic income. I got out of the office and into the parking lot and burst into tears. I realized that all of a sudden, I didn’t feel like the same person I was yesterday. My intellectual brain was like, ‘you’re the same person, you’re still doing the same things!’ But it’s that label that is completely different, the difference between ‘entrepreneur’ and ‘disabled.’

Despite wanting to believe that her source of income could not define her – that she could be both disabled and an entrepreneur – Tanya saw this future as unlikely within the parameters of ODSP. In this narrative, ‘disabled’ and ‘ODSP recipient’ effectively become interchangeable; the negative associations of ODSP affix themselves not only to recipients, but to disability more broadly. Writing of the complexities of disability identity, Shakespeare (1996) suggests that dominant discourses of inferiority, experiences of internalized oppression, and barriers to collective organizing all contribute to negative identifications of disability. In this context, a future where ODSP recipients claim disability voluntarily, neutrally, or even positively feels difficult to imagine.

While women’s stories of post-OBIP life emphasized foreclosed futures, we can – and arguably must – read hope within these narratives. In many cases, the pilot’s cancellation only emboldened women’s belief that “everybody deserves to be able to survive without stressing” (Shannon), disabled or non-disabled, sick or well. Indeed, women’s narratives display frustration and anger motivated not by being disabled and poor, but by being subjected to ableism and economic injustice. Among the most striking illustrations of this was Shannon’s outright rejection of the provincial government’s Reaganesque claim that “the best social program is a job” (MacLeod, 2018):

It’s really nice to hear Doug the slug [Doug Ford] tell me that the best social program is a job, but where would he like me to get one at my age, in my health, in Thunder Bay?...I have always believed that I earn my pay, even if it’s just ODSP. I don’t sit at home, and if I do, I’m not well. And even when I’m home, I’m doing something…I think you would find that the majority of people who live – try very hard to live – on a disability income, are the same way.

Linda’s powerful account of life after basic income was also characterized by resistance:

I am highly conscious of people’s belief that I should feel empowered from working…And how work is supposed to give me more dignity…But the question that runs through my head when I hear all this is when do I get to take care of myself? And do what’s best for me? When do I get to not be so exhausted that I fall asleep without making dinner? Or not be able to take care of my home and I’m too embarrassed to have people over? That’s quite literally – even with basic income – what happens to me, because working takes energy. This concept that work is the be-all, end-all for a person with a disability is wrong…I’m a sick person, right? I have a disability. And I’m sick. But I’m not allowed to act sick, because that’s supposed to not have dignity...Am I not allowed to have a disability? We claim I have a disability, and yet, I’m not allowed to be different.

It would be disingenuous to give basic income exclusive credit for the ways in which women spoke truth to power following OBIP’s cancellation. Still, women’s stories of life after basic income hint at what might emerge when we challenge taken-for-granted ways of thinking and doing, and open the door to new possibilities. What if we designed income support programs that no longer cruelly held disabled (and non-disabled) people below the poverty line? What would a society look like that valued people regardless of their productive potential? What would it mean for a policy to be evaluated not by its employment and health outcomes, but by whether it supports a disabled mother to enjoy a picnic in the park with her children?

In Feminist, Queer, Crip, Kafer (2013) implores readers not to refuse disabled futures altogether, but to pursue “futures that embrace disabled people, futures that imagine disability differently, futures that support multiple ways of being” (p. 45). With this in mind, I leave readers with two visions of the future as articulated by Shannon and Linda, respectively:

It makes no sense to me. The way we’re going right now is not working. We need to take care of each other, and that’s what this program was helping us to do.
If we all knew we had enough, that we would never lose our home, that we would never be without food and medical supplies or whatever we needed…I think that gives people room to dream. When you don’t have enough, dreaming doesn’t happen. The need to focus on survival is too much. It’s too scary to dream and it’s too depressing to dream when you can’t attain it.

Discussion & conclusion

The prominence of disability and poverty in recent Canadian policy debates underscores the urgent need for more ethical and just ways to sever the link between the two. Emergency income supports introduced by the federal government at the onset of the COVID-19 pandemic drew criticism for rates that far surpassed those of provincial disability income supports, along with eligibility criteria that denied assistance to many disabled people with fewer working hours (Dabaghi-Pacheco, 2020; Saba, 2021). Meanwhile, Canada’s medical assistance in dying legislation has been the subject of national conversation as critics warn that “poverty, not pain, is driving some disabled Canadians towards medically assisted death” (Leffler & Dimain, 2022). In particular, the results of this study take on a heightened significance in the context of the much-anticipated Canada Disability Benefit (CDB), on which progress has proven slow and arduous. Activists continue to emphasize the urgent need for income security policies that better address the needs of disabled Canadians, all while raising pressing concerns about the CDB’s rate, eligibility criteria, and sustainability (AODA Alliance, 2022). While the findings presented here pose implications for income security policy at large, they bear direct and immediate relevance to the design, delivery, and assessment of the CDB as a program that has been widely characterized as a disability basic income since its inception.

Drawing on interviews with 15 disabled women who participated in the prematurely-cancelled Ontario Basic Income Pilot, this paper examined how disability and ableism shaped and were shaped by women’s experiences before, during, and after their time in the pilot. Grounded in a critical feminist disability framework, narrative analysis led me to focus on women’s stories as a powerful yet neglected source of knowledge. Thomas (1999) insists that the “detailed account of the day-to-day life of one individual, of her past and her present, tells us an enormous amount about disability and society in general” (p. 78). In light of this, I contend that the accounts featured throughout this study offer essential insights into topics that have received inadequate attention in policy, academic, and advocacy settings.

Women’s narratives in the preceding analysis unequivocally expose the sinister relationship between poverty and disability, in which income insecurity exacerbates impairment and vice versa. As Ontario’s provincial social assistance program for low-income disabled residents, ODSP featured prominently in women’s stories of life before basic income, and was widely characterized as a punitive and disabling form of government-sanctioned poverty. Women’s accounts lay bare the ableist underpinnings of ODSP as a program that forces women to claim and prove disability in an oppressive environment where the labels of ‘disabled’ and ‘welfare recipient’ continue to bear social, political, and economic consequences. In this context, disabled women’s receipt of a (mostly) guaranteed, (less) conditional, (more) adequate income offered a shield from the structural ableism embedded in income security policy and society at large. For many women, basic income meant being able to afford basic needs, participate meaningfully in society, and more comfortably manage the effects of illness or impairment. In other words, basic income helped disabled women survive in an ableist world. Beyond this, women’s accounts of their lives both during and after the pilot offer a glimpse into basic income’s potential in building a stronger foundation for disabled people to practice collective care, resist dominant discourses of power, and dream up different disability futures.

Reading women’s experiences in the Ontario pilot through a critical disability lens injects much-needed nuance into debates about whether a basic income is inherently ‘good’ or ‘bad’ for disabled people. While OBIP improved disabled women’s lives insofar as it differed from ODSP, these findings equally suggest that several factors render basic income vulnerable to the same challenges embedded within existing programs. As a result, income support programs must be understood as sites of struggle and uncertainty in which ableism and interlocking forms of oppression can be challenged or reproduced. Consequently, there is an urgent need to engage more deeply with a number of questions related to the design and administration of income security programs, basic income or otherwise. How might approaches to determining eligibility be more equitable as well as less intrusive, burdensome, and rooted in logics of medicalization and pathologization? What is (or could be) the role of such programs in challenging social norms related to productivity, deservingness, and independence? What other policy responses ought to accompany income-based supports for disabled residents in Canada – and perhaps more importantly, what is the path to achieving these? By engaging with these questions within the policy, academic, and advocacy environments in which poverty and disability intersect, we might move towards income support programs that challenge – rather than simply perpetuate – the ableist norms and assumptions that so often underpin them. Ultimately, a deliberate focus on disability rights and justice is essential to fully realize basic income’s transformative potential as an alternative to existing policies.

The stories belonging to the women highlighted throughout these pages are still being written. Those whose lives were turned upside down by the cancellation of the Ontario Basic Income Pilot – as well as those whose lives continue to be turned upside down by poverty and governments’ inadequate responses to it – continue to tell stories of survival and resistance, although they should not have to. What’s more, these stories rarely have a single author: rather, they are co-written alongside policymakers, elected officials, caseworkers, researchers, advocates, and community members. For these and other (co)authors implicated by these narratives, the findings from this study offer valuable insights for informing our approaches to advocating for, designing, delivering, researching, and evaluating provincial and federal income support programs that more meaningfully support disabled people and challenge systems of oppression. While building this future is a daunting task, stories offer a powerful point of departure to begin imagining something better.

References