Surviving in Eugenic Times: Disabled Artists’ Feelings about Their “Under-the-Table” Livelihoods

Introduction

Currently, in Canada, the lived experiences of disabled people are also death experiences. In 2023 a leading national newspaper, The Globe and Mail, published an opinion piece by psychologist Scott Kim pointing to “a uniquely MAiD ideology” which he characterized as an uptick in unsolicited suggestions for disabled people to choose Medical Assistance in Dying (MAiD). MAiD is a process whereby a doctor or a nurse practitioner assists a person, at their request, to end their life. Kim argued that the promotion of MAiD in Canada brands the choice to die as “care” rather than as a last resort, which is particularly dangerous for “those who desperately want to live but cannot afford to.”¹ This discursive flip of violence into a gesture of care is the contested ground on which our research on the lives and livelihoods of artists with bodymind differences—that is, those identifying as sick, disabled, mad, Deaf, neurodivergent, crip, intellectually disabled, and a myriad of other self-identifiers—takes place. Although their work contributes to Canada’s vibrant, political, and robust disability, Deaf, crip, and mad arts movement,² little is known about these artists’ livelihoods—how they survive and thrive amidst neoliberalism’s ableist neutralization of “care” structures available to end their lives. As part of a research project called “Artistry Under the Table: D/deaf and Disabled Artists’ Livelihoods” (hereafter, Artistry Under the Table),³ we combine critical disability studies and a sustainable livelihoods approach to follow Deborah Stienstra and Theresa Lee’s livelihoods framework, and ask if a perspective that emerged from studies of development in the Global South can be applied to the lives of disabled people in the context of neoliberal capitalism in the Global North. Stienstra and Lee suggest that we begin by “widening our gaze in concrete terms” to better understand the lives and experiences of those whose livelihoods are deeply connected to crip artistry and backlit by active threats of new eugenics.⁴ We respond to their call by mapping the “uniquely MAiD ideology” and necropolitical contexts that constitute disabled artists’ affects of disposability and dignity, and their complex engagement with artistry-as-resistance. 

“Artistry Under the Table” is one node of a Social Sciences and Humanities Research Council (SSHRC) Partnership Development Grant-funded project based at the University of Guelph focused on disabilities and livelihoods in Canada. “Artistry Under the Table” has aimed to explore how disabled, Deaf, and mad artists use the arts to represent cultural and political stories, share experiences, engage with emotions, and challenge dominant narratives surrounding difference. Emerging from the burgeoning interest in crip arts and crip cultural practices—culturally engaged art and cultural practices that center disabled people’s reclamation of “crip” and their creative engagement with culture and access practices that resist assimilation into normative culture—our project sought to explore the challenges faced by disabled and crip artists in Canada.⁵ When we say “under the table,” we mean how people engage in art and artistry in covert ways that sustain their livelihood by establishing resources needed for survival through a combination of institutionalized funding (e.g., arts grants, state funding) and other means (e.g., cash payments, time/space sharing, selling art, sex work, short-term “gigs,” “caregiving, bartering, hunting, trapping, or berry-picking,” etc.).⁶ We interviewed 20 artists to learn more about their experiences of thriving and surviving under neoliberal capitalism.⁷ The interviews, which took place between March 2020 and May 2020, revealed the ways in which government policies impact artists’ livelihoods and how art plays a significant role in sustaining life and thereby livelihoods. 

A Sustainable Livelihoods Approach

“Artistry Under the Table” takes a sustainable livelihoods approach in its engagement with disabled artists’ lives. This approach is rooted in the study of livelihoods, which refer to things “people do in order to . . . sustain themselves . . . in ways that are sustainable by them,” with a commitment to focusing on non-market approaches to livelihoods.⁸ In other words, a livelihoods approach encompasses the different actions individuals take to support themselves in sustainable ways that do not depend on market mechanisms, such as selling their art or commodifying their art practice. Disabled people in Canada have caught the attention of livelihoods researchers because disability and poverty are deeply intertwined in this country;⁹ the 1990s policy decisions by the federal government have resulted in decreased spending on disabled people that is also distributed by “a disjointed patchwork of programs.”¹⁰ Recommendations for policy reform often focus on disabled people’s assimilation into the workforce.¹¹ However, emphasizing employment and employability follows a deeply individualistic logic that is contested by some disabled artists and activists, including Sunaura Taylor,¹² who explains: 

Much of the empowering rhetoric in disability movements is about becoming employed and about having equal access to mainstream society. Capitalism has at its root the idea of an individual’s worth being intrinsically linked to their production value. Many, though by no means all, disabled people will never be good workers in the capitalist sense: if you cannot move or speak, it is hard to succeed in a mainstream career. 

Attuned to preoccupations with development and poverty, a sustainable livelihoods framework de-centers the market as provider and accounts for non-material aspects of poverty.¹³ As Stienstra and Lee explain, “underlying such an approach is a commitment to explore non-market-oriented approaches to living one’s life.”¹⁴ This perspective challenges the assumption that income and consumption ought to be adequate measures of one’s welfare (or value)¹⁵ and understands assets to be both material and social.¹⁶ By expanding the value of assets beyond the financial sphere to encompass the social, a sustainable livelihoods approach also recognizes the intangible.¹⁷

Intangible assets may be hidden, such as relationships to others and to land. Sustainable livelihoods research into artists’ lives specifically reveals many hidden assets; and existing research also critiques the premise that art-based social enterprises “lift people out of poverty” in part because such strategies tend to be “imposed [on] rather than enacted” by local people.¹⁸ For example, Donna Weston proposes a conception of musical livelihood that includes musician’s “musical lifeworld[s]” that cannot be explained only in economic terms.¹⁹ Elsewhere, Frederik Unseld explores the interrelation between the struggle to survive and the artistic imaginary of one Kenya-based artist, uncovering both “the harsh, more grounded flipside to . . . aspirational efforts at cultural entrepreneurship,” and how artistic identity can remain constant, vibrant, and flourishing while waiting for income-generating opportunities. They conclude that art-making is both part of, and apart from, the “hustle.”²⁰ 

A Sustainable Livelihoods Approach in Canada 

The context for research about disabled artists’ livelihoods in Canada is unique. Here, disability culture is under threat, asserts Rachel Gorman. Many people engaged in disability and crip art and culture making “are threatened by arts institutions and charitable organizations that seek to promote disability arts while dismissing its political base.”²¹ Indeed, as Robert McRuer notes, the term “crip” represents not only an identity but also a historical situation, with the phrase “crip times” denoting both austerity and a range of personal experiences and creative reactions.²² In these crip times and recognizing the distortions that arise from using disability as a metaphor and cultural trend, crip artists advocate for reevaluating the neoliberal principles of the contemporary art world through a framework of care.²³ This is particularly urgent given that MAiD frames the choice to die as a form of “care,” posing significant dangers for those who wish to live but lack the means to do so, and serving as the contested ground for our research on the lives and livelihoods of artists with bodymind differences. Building on this research, we recognize the merits of expanding concepts of assets to include the social and intangible, while we also query the potential pitfalls in a necropolitical economy of using the term “assets” as a marker of value in relation to intangibles such as art making practices. Our interviews with artists aimed to better understand how disabled, Deaf, and mad artists in Canada sustain themselves and their artistry both within and outside of market-oriented approaches in the Canadian context. Noting that sustainable livelihoods frameworks stem from international development work (primarily in the Global South), Stephanie Baker Collins (2004) warns of the risk of decontextualization in using this approach in Canada.²⁴ Such decontextualization might occur if livelihood strategies focus solely on individual efforts to increase assets rather than attending to interactions, contexts, livelihoods outcomes, and, importantly, people’s own interpretations of their reality.²⁵ With this warning in mind, we anchor the following analysis in the “uniquely MAID ideology” that Kim described by contextualizing participants’ as those whose lives are characterized by the state as surplus, disposable populations. As a result, disabled artists’ are navigating their livelihoods in ways designed by, and in resistance to, Canada’s necropolitical ethos.²⁶ Below, we describe this necropolitical context beginning with an exploration of neoliberal-ableism²⁷ and its close relationship to the concept of “slow death.”²⁸

An Overview of Canada’s Necro-Economy

The structural and systemic barriers and processes that impact disabled people’s lives and livelihoods in Canada are arguably rooted in the dynamics of neoliberalism. Following Tanja Aho, a focus on sustainable livelihoods attends to the ways that “certain liberal tenets maintain their stranglehold on our conception of the good life” even amid calls for disability-related policy reform.²⁹ Stienstra and Lee surmise that a characteristic of neoliberalism is that “in order for disabled people to survive, let alone thrive, in neo-liberal circumstances they need to embrace ableism.”³⁰ Ableism assigns differential value to bodyminds based, in part, on their ability to satisfactorily re/produce, “excel,” and “behave” according to metrics and standards developed to enrich markets and strengthen nations that are intertwined with eugenics, anti-Black racism, misogyny, settler colonialism, imperialism, and capitalism.³¹ Ableism is embedded in structures of governmentality that enforce productivity and competitiveness and debilitate those who cannot meet the demands of a neoliberal economy—a state of affairs that Dan Goodley, Rebecca Lawthom, and Katherine Runswick-Cole call “neoliberal-ableism.”³² It is neoliberal-ableism that evaluates life’s worthiness through “forensic” calculations, categorizing individuals based on differences and creating hierarchies within those categories. This approach informs resource allocation, using accounting methods to decide whose lives are deemed significant and how much they are worth.³³ Canada’s necro-economy takes shape in the context of neoliberal-ableism.

At its core, necropolitics is “the capacity to define who matters and who does not, who is disposable and who is not.”³⁴ It is a framework that illuminates how governments assign differential value to human life. In this way, necropolitics shifts the focus from “make live” to “let live and make die,” where life is managed under neoliberal-ableism. Necropolitics abandons the idea of improving life (“make live”) in favour of allowing survival only for those with the means, such as wealth or power. Those without such resources are left to fend for themselves or, in many cases, are actively made to die under these systems.³⁵ In this way, necropolitics illuminates how state policies assign “differential value to human life” which we would argue is entangled with ableism.³⁶ For Achille Mbembe, necropolitics is carried out through three entwined factors: a necro-economy, death on a large scale, and confinement of certain populations.³⁷ Below, we describe how each of these factors is enacted for disabled people in Canada. 

Neoliberal-Ableism and Slow Death in Canada

Canada’s necro-economy operates through a labor market that favours only those “who embody the normative capacities” privileged by neoliberalism.³⁸ Following Lauren Berlant, the eventual wearing away of bodyminds under neoliberal-ableism results in a process of “slow death” whereby some bodyminds are rendered disposable and permitted to wear down.³⁹ Henry Giroux describes this as a biopolitics of disposability, explaining that disposability can be evidenced by how “minorities of colour and class . . . are vanishing into a sinkhole of poverty.”⁴⁰ Canada’s confinement of disabled people in poverty, including through state-regulated funding programs that are argued to reproduce rather than prevent poverty, is well documented.⁴¹ An example relevant to our research with disabled artists is the Ontario Disability Support Program (ODSP), a public “income replacement” program that complicates our understanding of “assets” in relation to livelihoods. Those eligible for ODSP receive a monthly payment for basic needs and shelter. While the amount a person can receive varies based on the program’s assessment criteria, the most a single person can receive is $1,169 CAD per month, meaning that people who receive ODSP are living well below the poverty line.⁴² Researchers have documented the many ways in which ODSP is inadequate, including the program’s specific eligibility criteria that make people “vulnerable to poverty and its symptoms, such as food and housing insecurities.”⁴³ In this way, ODSP troubles conventional understandings of assets as material, social, and intangible. Though ODSP represents the material asset of money, its proximal causation of poverty via state design calls into question its value as an asset. More than this, ODSP monitors recipients’ attainment of other assets (e.g. income, grant dollars, monetary gifts), clawing back when recipients have more assets than the program allows. These conditions complicate the use of asset measurement to assess the livelihoods of disabled Ontarians.

Emerging from these conditions is the “death-world” necro-economy, wherein death on a large scale is introduced. The work of death on a large scale is, as Mbembe explains, entangled in state-sanctioned logics of disposability. Mbembe contends the,

power to manufacture an entire crowd of people who specifically live at the edge of life, or even on its outer edge—people for whom living means continually standing up to death. . . . This life is a superfluous one, therefore, whose price is so meager that it has no equivalence, whether market or—even less—human; this is a species of life whose value is extra-economic, the only equivalent of which is the sort of death able to be inflicted upon it.⁴⁴ 

Mbembe’s question of “who is disposable and who is not” transforms neoliberal-ableism and “slow death” into necropolitical issues.⁴⁵ The necro-economy centres on the elimination of populations and is employed through “small doses” of everyday violence, including limited access to the workforce and state-enforced poverty measures, with MAiD offered as the alternative.⁴⁶ Mbembe writes that “coercion itself has become a market commodity” and it is through this frame that necropolitics unfolds.⁴⁷ The extraction of productivity as a resource and the disposability of those positioned as “unproductive” create new “death-worlds” wherein populations “are subjected to conditions of life conferring upon them the status of living dead.”⁴⁸ These state created “deathworlds” are where those deemed disposable, individuals who disproportionately consume healthcare resources or contribute to escalating healthcare costs, are left to a slow death.⁴⁹ The combination of neoliberal-ableism and slow death that characterizes the landscapes of disabled people’s lives and livelihoods in Canada are deeply necropolitical. 

Thanapolitics in Canada

The “death-worlds” that Mbembe describes can also be understood through the lens of biopolitics.⁵⁰ Some scholars assert that the term biopolitics originates in the work of Karl Binding and Edward Hahn,⁵¹ while others gesture to the work of Hannah Arendt,⁵² and still others trace its lineage through Michel Foucault.⁵³ Biopolitics represents an evolution of power toward the regulation and confinement of populations in the interest of making life “healthier . . . and purer.”⁵⁴ Canada’s population confinements have long enacted the emphasis on health and purity through a legacy of eugenics projects aimed at eliminating bodymind differences. Such projects include residential school systems targeting Indigenous children between the 1870s and 1990s, the institutionalization of disabled people,⁵⁵ and the sterilization of disabled and Indigenous people across Canada.⁵⁶ While these examples point to literal confinement, we note that Mbembe’s⁵⁷ criteria for necropolitics—that is, confinement of populations—can be transinstitutional, including through eugenic practices aimed at producing and privileging a non-disabled, white population.⁵⁸

One of the realities of a necropolitical economy is that disabled people’s lives unfold through newgenics—a concept that points to the legacies of eugenics which continue to shape disability activism, culture, and politics.⁵⁹ As a settler colonial intervention, eugenics is often associated with the past; however, as we document below, the long shadows of eugenics haunt current MAiD legislation and the lives of the artists featured here. One way of understanding the connection between newgenics, a range of modern medical, political, and social practices focused on ‘enhancing’ humanity while erasing disability and difference,⁶⁰ and the current livelihoods of disabled artists in Canada is through the intertwined concepts of thanatopolitics and necropolitics. Launching from biopolitics and aligned with necropolitics, Giorgio Agamben asserts that sovereign power determines who is allowed into the political body; the expansion of “bare life” marks the point at which biopolitics becomes thanatopolitics, or the politics of death.⁶¹ Thanatopolitics refers to a way to “meaningfully subvert biopolitical logic through death,” although not without contestation.⁶² Both necropolitics and thanatopolitics focus on how governments use death to control populations, either directly or indirectly. However, while necropolitics imposes death, thanatopolitics is a subtle way of making death available; thanatopolitcal discourse makes death “accessible, and can present death as an option, as a right, as a legitimate goal, through the operations of discourse.”⁶³ Judith Butler contends that biopolitics can be a politics of affirmation in that shared vulnerability can promote life because it contests and mourns all untimely and unjust death.⁶⁴ With these debates in mind, we shift our attention below to the ways in which eugenics are intertwined in evolving MAiD discourses and constitute the context in which disabled artists’ livelihoods unfold.

“Widening Our Gaze” around MAiD 

We take up Stienstra and Lee’s call to “widen our gaze in concrete terms” by attending to the shifting landscape of MAiD legislation in Canada and its evolving contours, which impact disabled people’s livelihoods.⁶⁵ We begin “widening our gaze” from the vantage of the 2023 University of Manitoba event called “Is MAiD the New Eugenics?” wherein speakers discussed the overarching message emerging from changes to MAiD legislation. The event concluded that by removing the clause for a “reasonable and foreseeable death,” the revised MAiD legislation now categorizes “death as an accommodation” based on disability.⁶⁶ As Catherine Frazee so succinctly stated at the event, MAiD legislation “will frame death as a benefit conferred under the law, but naming it a benefit does not make it so.”⁶⁷ Frazee’s point is that through the discursive turn of “death” into “care,” access to death can be interpreted as a potential asset and disabled people’s dependencies can become justification for further violence.⁶⁸

An Overview of MAiD in Canada 

The ethos of disability and death in Canada is not new. Significant events in the past three decades have imprinted public discourse on disability across the country in ways that have led to contemporary MAiD. For example, in 1993, British Colombian Sue Rodriguez unsuccessfully applied to the Supreme Court of Canada to amend the Criminal Code to allow for physician-assisted death in the face of a terminal illness. The same year, Saskatchewan farmer Robert Latimer killed his 12-year-old daughter, Tracy, who had cerebral palsy. This murder prompted new cultural discourse about euthanasia for those lacking the “capacity to decide for themselves whether their life [is] worth living.”⁶⁹ Decades on, Latimer’s lawyer credits his client’s actions with advancing legislation on assisted dying.⁷⁰ Later, in 2013, the Supreme Court in Carter v. Canada ruled that there should be equal access to suicide regardless of the person’s level of physical ability. Following this ruling, the federal government tabled Bill C-14, which stated that Canadian residents deemed competent to make decisions about their healthcare who have a “grievous and irremediable medical condition” may request MAiD.⁷¹ From the ascension of Bill C-14, a cost-benefit analysis began to take shape. Estimates from 2017 suggest assisted death could reduce annual healthcare spending across Canada by between $34.7 million and $136.8 million per year, whereas it is estimated to cost $1.5 to $14.8 million to fund assisted death.⁷² The economic benefit conferred by MAiD echoes Giroux’s⁷³ conceptualization of a biopolitics of disposability and Mbembe’s positioning of necropolitics as “economic and symbolic violence” which forces entire groups of people to “live at the edge of life.”⁷⁴ 

Legislation expanding MAiD by, among other changes, removing the requirement for a “reasonably foreseeable” death, passed in March 2021⁷⁵ despite sustained activism, including the Disability Filibuster.⁷⁶ Changes to MAiD legislation during the COVID-19 pandemic, at a time when non-disabled Ontarians were eligible for the Canada Recovery Benefit of $2,000 per month and disabled Ontarians were subject to ODSP and continued to receive a maximum of $1,169 monthly, made clear the inequitable access to life-sustaining resources.⁷⁷ With the rising cost of living in Ontario, dying became “cost-effective,” and stories of disabled people choosing MAiD because they could not afford to live surfaced.⁷⁸ What the thanatopolitical rhetoric about MAiD obscured was the conflation of choice and meaningful choice. Indeed, according to Jan Grue, this is perhaps where the differentiation between thanatopolitics and necropolitics becomes clear. Thanatopolitics is interested in the rhetorical production of access to death as “good deaths” and it is this rhetoric that shapes the meaning of death.⁷⁹ As disability historian Paul Longmore once wrote, “given the absence of any real choice, death by assisted suicide becomes not an act of personal autonomy but an act of desperation. It is fictional freedom; it is phony autonomy.”⁸⁰ We offer this context to expand on the “uniquely MAiD ideology” in Canada that impacts disabled artists’ livelihoods described below. 

Project Background 

In this exploratory inquiry we took a critical action approach, which involved cultivating a deep understanding of the complexity of disabled artists’ lives and experiences through in-depth, semi-structured interviews.⁸¹ In-depth interviewing is a social form built on intimacy and the gradual accumulation of knowledge.⁸² Our gradual understanding of participants began during the recruitment process when our call for research participation asked potential participants to fill in a recruitment form to describe themselves. Of 70 people who filled in the form, we chose 20 artists from across Ontario as key informants.

Methodology

Our semi-structured, in-depth interviews were composed of questions that invited interviewees to tell stories and offer detailed descriptions of their lives and livelihoods as disabled artists.⁸³ Our approach understood the interview space as one rife with feelings, responses, and emotions, which meant we structured the interviews with room for breaks, long pauses, and opportunities to opt out of questions.⁸⁴ Following a sustainable livelihoods approach, we were interested in each person’s lived experiences, values, and decisions, and we used the information on the recruitment form as a launching point.⁸⁵ We offered several open-ended questions about the artists and their experiences, “recognizing that they make choices, in particular contexts and constraints, and with livelihoods outcomes.”⁸⁶ To explore these choices, and better understand the contexts and constraints in which they are made, we aimed to treat interviewees as active agents in producing knowledge as they made sense of their world and praxis by inquiring collaboratively to generate insights.⁸⁷ This action approach takes a participative and systemic view of the world, and positions acting and knowing as relational—that is, “under the table” acts that can be revealed and better understood through in-depth discussion.⁸⁸

Participants

Of the 20 participants, 6 identified as Deaf or hard of hearing, 13 identified as intellectually disabled, 11 identified as a person of color, 5 identified as Indigenous, and 7 identified as mad. These overlapping identity categories proved to be inadequate in encompassing participants’ identities, as many responded at length to the final recruitment question that asked if there was anything else they would like the research team to know. For example, one interviewee noted how they “kind of don’t fit into boxes easy” as their identity overflowed the categories we offered, stating “I’m two spirit, trans. I’m a person of colour. I consider myself to be gender queer and, and also like queer in sexuality . . . I’m Indigenous mixed race, but then people assume I’m Indigenous to Turtle Island, and I’m not . . . I’m first generation born on Turtle Island.” Another interviewee who identified with “none of the above” categories noted that “mine is an invisible disability which faces highly particular challenges as my degree of pain and impairment is quite literally invisible to even those who know me best.” Through an in-depth recruitment process, all interviewees came into this project having told a story about themselves, their multifaceted identities and embodiment, and their relationship to art prior to the interview.

Although in-depth interviewing generally involves face-to-face interaction,⁸⁹ our data generation happened over Zoom due to COVID-19 pandemic-related lockdowns that prevented in-person interaction. At times, participants showed their art by holding up artwork, singing, or moving around their space. All interviews lasted from 45 to 60 minutes and were transcribed and anonymized. Participants were given the option of using a pseudonym to identify themselves. Here, we name and describe each interviewee who appears in this paper using the terms they assigned to themselves for the purpose of publication: Frank, an Indigenous sculptor; Winston, a hard-of-hearing craft witch with chronic pain; Jennifer, a neurodiverse graphic artist; Kiran, a chronically ill visual artist of color; Chrystal, an Indigenous multimedia artist; Emily, a neurodivergent actor and filmmaker who identifies as fat, queer, and disabled; Buffy, a Lenape and Potawatomi neurodiverse artist; Shaffie, a Deaf, Muslim woman of color and painter; Andreas, a playwright and actor with an intellectual disability; Whitebear, a two-spirited, Indigenous inter-/multi-interdisciplinary artist of mixed heritage; mad illustrator of color, Fabian; Salina, an immigrant and neurodiverse multidisciplinary artist of color; Yuki, a neurodiverse artist; Peppercat, a Mad⁹⁰ filmmaker; and Erin, a disabled circus arts performer.

Disposability, Dignity, and Art as Resistance in Necropolitical Contexts

Disposability

As our interviews unfolded, we began noticing comments from artists about the ways in which they were “living at the edge of life,” as Mbembe writes in his description of the logics of disposability.⁹¹ Disposability, a key characteristic of necropolitical contexts, happens through “small doses” of violence such as those described by the artists. For example, Jennifer, a neurodiverse graphic artist, described her desire to use “art as a voice and use it in some way to make people understand how hard it is [voice breaking] to not be heard . . . or recognized as a person of value.” However, she felt unsure about how to “make art to fix . . . or heal” experiences of oppression that emerge in an ableist context. A chronically ill visual artist of color, Kiran, echoed Jennifer’s sentiment by stating,

I remember not feeling represented at all through art when I was younger. So like, I think just showing other people that . . . our voices do matter. And we are not disposable and we’re going to make sure people know that.

Although not all interviewees were involved with state welfare systems, some participants were ODSP recipients, highlighting how institutional structures, like disability support, can contribute to the confinement and impoverishment of certain population.

Several interviewees described the difficulties of living on the amount provided by the program. These difficulties are compounded by the complexity of the ODSP system and the need to advocate for oneself. Surviving under this precarious system of material asset and social liability was described as emotionally draining and frustrating. As Indigenous sculptor Frank noted, 

It just started affecting me more and more as I got older. It makes sense that it would affect me as I get older, because I’m less and less of a person. . . . You don’t have the strength you used to have; you don’t have the patience you used to have. You don’t have a better mindset to look at things in a more positive way. You get beaten down. And that’s what I find, you get beaten down longer and longer the situation remains the same. 

Several artists noted the continual need to validate and prove their disability to receive poverty-level funding. Winston, a hard-of-hearing craft-witch with chronic pain, remarked that having to “prove my disability has always been a huge fight and it has been very, very . . . diminishing. It has made me feel very small and unworthy.” Similarly, Emily, mad neurodiverse filmmaker, and performance artist, echoed this sentiment, describing the “hoops they make you jump through” as “disgustingly stressful.” Other artists gestured to how living in poverty was a struggle, with Frank noting that those with “decision-making authority” did not understand.

Significantly, this sense of disposability was entangled with the other social locations and identities that the artists inhabited. For example, Indigenous multimedia artist, Chrystal, stated that shame and internalized racism affects knowing and accepting your life as valuable. Neurodivergent actor and filmmaker, Emily, noted how difficult it is as a fat, queer disabled woman to be seen as an artist, stating that it can be “very dehumanizing.” Shaffie, a Deaf woman of color and painter, also described the discrimination she experienced as a Muslim woman who is also Deaf and how this discrimination has impacted both her and her family. She went on to say that “I’ve held most of that in. I find the only outlet, the best outlet for that, is in my art.” The overwhelming experience of needing to prove one’s value in the face of a society which devalues disabled life led Andreas, a playwright and actor with an intellectual disability, to declare, “I am a human being with feelings.”

Participants’ positioning as people resisting dehumanization, including through their art, is reflective of necropolitical disposability, wherein those without such resources are often left to struggle on their own or, in many instances, are deliberately subjected to harm or death within these systems. As COVID-19 demonstrated, racialized and disabled populations—along with essential workers and the elderly—were regarded as disposable, subjected to conditions so unsafe that they could lead to death, or, in the case of MAiD, actively caused death.⁹²

Dignity

Disposability was entangled with conceptualizations of artists’ worthiness of respect, which we characterize as dignity. We engage with the word “dignity” carefully, knowing that in Canada, the word is closely linked to MAiD. As Frazee notes, the term “dignity” is commonly used in mainstream affective and emotive language such as “dying with dignity,” which “diverts attention from the deeper question of how our laws and social policy respond to human vulnerability and decline” and, again, raises questions about dignity as an intangible asset.⁹³ Nonetheless, “dignity” emerged as a term used by artists to describe their experiences. Kiran, a chronically ill visual artist of color stated, “We never have dignity, we never have dignity, there’s never dignity for us.” Kiran continued, linking his discussion of a lack of dignity to inspiration porn (the portrayal of disabled people as inspirational based on their life circumstances) and poverty porn (the exploitation of people in poverty to generate sympathy), stating, 

we make disabled bodies this spectacle. And I feel like that’s the only way for people to ask for help; you have to really like to sell yourself, sell your struggles in order to get any kind of help. And I don’t think people should have to do that. There are venues that I’ll talk to that I’m like, “Are you wheelchair accessible?” and they’re like “No, but we can try to fit a wheelchair”—and I’m like “No, they shouldn’t have to go around the back. They should just be able to roll in as they please.” So yeah, I think like just, it’s not as easy as putting the ramp in. But where are you putting it? Is it prioritized the same way that a regular door would be?

However, many artists also offered new meaning to the term “dignity” as they described their artistry. They gestured to the ways in which creating arts and culture provided them with dignity and offered new vantage points from which to view the isolation and hardships endured through the pandemic. As Whitebear, a two-spirited Indigenous multi-interdisciplinary artist of mixed heritage, stated, “Art does make life beautiful. Because right now I see in quarantine what’s keeping people hopeful: it’s art.” Whitebear asserted that “With great art comes a wealth of experience,” and said that art’s teachings are invaluable to society. Erin, a double amputee circus artist, described coming back to the arts as the process of finding dignity in her new disabled life following a car accident that forever changed her body, stating, “I finally just got to the point where I had to do something. And I thought, if I wanna die, that’s always an option there; but let’s try something different.” Through Erin’s statement, especially, we note a challenge to the rhetorical directive of “dying with dignity” that suggests there is dignity in living creatively.

For some artists, dignity was tied to neoliberal-ableist notions of productivity. For example, mad illustrator of color, Fabian, described the social pressure to have a “sort of A+ top-tier vigil mindset of, there’s no off days . . . Every day that you’re not working is a day that’s lost” and how this mindset makes the self-care needed for their mental health difficult, especially when art is not seen as “real work.” This need for productivity, for some artists, was a “9–5,” or a “normal” job, and was made more difficult when tied to the desire for benefits packages often provided by full-time employment. Others described self-employment or entrepreneurship. As Salina, an immigrant and neurodiverse multidisciplinary artist of color, noted, “As an entrepreneur you work so hard . . . you’re going to be bleeding and dying and it’s going to be awful.” Emily, mad neurodiverse filmmaker and performance artist, turned this focus on productivity inwards and wondered “how much more I could get done if I just didn’t want to die all the time.” These comments by interviewees are particularly pertinent as we know that in health crises, necropolitics exacerbates the marginalization of those labelled “non-productive,” reducing them to sacrificed bodies for capital accumulation.⁹⁴ Moreover, health and the right to life are significantly shaped by ableism which defines “a good life” in terms of productivity within a capitalist framework.⁹⁵

Art as Resistance

The production of disability culture through arts practices was a site of resistance for many artists. Several described their art practice as one that challenged the rhetoric of disposability by deepening their connection to their own values, desires, and larger disability culture. For example, mid-career artist Yuki describes her neurodivergence as what brings her “closer and closer to my own personal dialogue,” which provides a different perspective than the “normative view.” Winston echoed Yuki, stating,

I make art because it makes me feel more connected to myself … It makes me feel like I understand myself a little better. And every time I make art I feel a little closer to myself.

This comment suggests that artists are the ones giving life to non-biomedical understandings of disability—they are literally and figuratively creating new language, forms, perspectives, perceptions, etc., by deeply mining and grappling to represent aspects of non-normative embodied and embedded life from the inside out.

Others described the production of art as resistance to isolation and an experience of the affect of solidarity that emerges through arts practice and community. For example, Winston describes how his art is a visual representation of his experiences of pain and isolation, and how creativity “just kind of brings you back to yourself. I think we were created to create.” Whitebear asserted that disabled artists were “leading the way through this pandemic” by sharing strategies for isolation and lack of access to resources that nondisabled people were just starting to experience. Yuki echoes these sentiments and describes her art practice, particularly in relation to the difficulty of communicating, as “a survival mechanism.” Still others describe the empathy emerging from their lived experience as disability cultural producers. Jennifer, a neurodiverse graphic artist, says:

I think that what my experiences have taught me is an incredible level of empathy. I feel like I relate to people better, and I feel like I read art better than I did before. I feel like I relate to just everything better than I did before. 

These feelings of empathy also arose in and from the broader disability arts community. For example, Peppercat, a Mad filmmaker, described finding empathy in the mad arts community, which supported her artistic practice of documentary filmmaking. In this way, art can be a powerful form of resistance to necropolitics by nurturing communities, and fostering dignity. Moreover, art has the potential to affirm non-disposability. As Kiran, a neurodiverse multimedia artist of color describes, the need to make art is a form of resistance to necropolitical disposability, noting how art shows people that “our voices do matter . . . we are not disposable and we’re going to make sure people know that.” In attempting to survive the Canadian necro-economy, which prioritizes profit over life, art emerges as a tool for reclaiming agency in the face of neoliberal-ableism.

The interviews also revealed that, for these artists, a significant part of resistance through art was the building and nurturing of community. While some artists felt that disability and Deaf arts communities were “having a moment,” others felt that the art and communities of artists were undervalued. Of the attempt to sustain and nurture community, Buffy, a Lenape and Potawatomi neurodiverse artist, noted that for her this meant “trying to be present, whether that’s physically or more digitally.” Conversely, despite attempts to nurture community, its absence was noted by some, including Shaffie, a Black Deaf painter. This lack of community was partly due to the small numbers of Deaf artists in Canada and the limited American Sign Language interpreters available and skilled in artistic interpretation. Access to community was region-dependent, with Chrystal, an Indigenous multimedia artist, stating that a disability arts community in her region was non-existent, while Peppercat noted Montreal had a thriving disability arts community, Erin described Calgary as a hotspot for disability arts, and several artists noted the burgeoning disability arts scene in Toronto. For some artists, like Jennifer, the shift to online during COVID-19 meant that online disability communities became easier to find and access.

Feeling part of a disability community, however, is impacted by the internalized feeling that one needs to prove that one is disabled enough. This perception was particularly noted by artists when applying for grants earmarked for disability and Deaf artists. As Emily, a mad neurodiverse filmmaker and performance artist, states, “I sort of struggle with feeling that I’m not disabled enough.” She went on to note: 

I think part of it is … choosing what identities to disclose or I guess to build your art around. At least on the professional side of things. So that kind of goes back to what I was saying earlier, you know, if I talked all the time about how much I wanted to die, people would probably write me off very quickly.

Other artists linked the continual need to validate their disability back to the application process for ODSP, as outlined in the subsection on disposability. 

“Widening Our Gaze” to De-Neutralize Care and Art

The work of “widening our gaze in concrete terms” involves expanding livelihoods frameworks to include and work beyond a sustainable livelihoods approach, and in so doing we account for the ways in which disabled, Deaf, and mad artists demonstrate their unique understandings of what it means to build and sustain a life in a Canadian necro-economy fuelled by eugenic capitalism. It is clear that the artists interviewed for this project position themselves complexly through lenses of disposability, dignity, and resistance which are tethered to the “uniquely MAiD ideology” that is embedded in their experiences of sustaining themselves and their artistry.⁹⁶ Indeed, the very personal work of creating art was almost always intertwined with the complex navigation of state-based funding systems and the national impetus to contain disabled populations. The line between disabled artists’ experiences and the imposition of “decision-making authority,” as noted by Frank, was clear in every interview. And, even paired with thoughts about and affect toward resistance, the neutralization of “care” structures—from state-based funding to arts grants to assistance in dying—proved difficult for artists to navigate and survive, demonstrating their disposability and leading to compromises in, and lack of, dignity unless this feeling could be countered by “productive” artwork.

Overall, the punishing conditions of neoliberal-ableism were articulated by many of the interviewees, whose lives and artistry do not assimilate into normative societal roles. The positioning of many of these artists outside of the normative labor market resulted in feelings of disposability, with echoes of Berlant’s descriptions of “slow death.”⁹⁷ For example, Frank’s and Winston’s respective descriptions of themselves as “less and less of a person” and as “diminishing” speak to feelings compounded by intersectional identity markers including and beyond disability. Given that the biopolitics of disposability is a key feature of necro-economies,⁹⁸ through these artists’ dialogues we reach a possible response to Mbembe’s question of who is disposable and who is not:⁹⁹ disabled artists feel disposable, and are well aware of their precarious positioning in a neoliberalized former welfare state. Indeed, this positioning forces participants to advocate for themselves and “prove” their eligibility both for state support and artistic support as they navigate conditions of poverty. This process of self-advocacy and system navigation is intrinsic to the lives and livelihoods of disabled artists. We consider disposability to be an intangible aspect of poverty that accompanies the material aspects of poverty these artists described, even amid their demonstrated ability to build, explore, and achieve non-market-oriented approaches to life. We question how a sustainable livelihoods approach with a focus on assets might lead to the assessment of the intangible. For example, when disabled people’s lives are mired in disposability, access to death via MAiD may be interpreted as a material, social, and intangible asset and liability.

Further, the interview excerpts above demonstrate a palpable absence of dignity in some artists’ lives, while others, including Whitebear, express having found dignity in the work of creating art. Notably, the concept of “dignity” has been important in the country’s public discourse about MAiD, encompassed as it is in the ethos of eugenics. Although the interviewees in this project did not turn their attention toward “dying with dignity” discourse, it is notable that dignity as a concept emerged alongside talk about death. For some artists, including Erin and Emily, the option to die is actively in play as they engage with artistry and the work of creating and maintaining their livelihoods. While some artists reported establishing dignity in their lives (including through artistry), the discovery or recovery of dignity was, at times, paired with the option of death. This pairing suggests that disabled artists’ lives are inseparable from Canadian eugenics, and ongoing thanatopolitical discourses about MAiD that continue to control disabled populations.

Finally, the theme of art-as-resistance reigned over this data. Resistance emerged though artistry for many interviewees who used art to resist feelings of disposability and to uphold dignity. For some, art served as an anti-eugenic connection to disability culture and as a means to produce and participate in disability or crip cultural practices,¹⁰⁰ a sentiment in line with the deeply political work of disability arts movements.¹⁰¹ Such practices support disabled people’s lives and advocate for a future that includes the lives of disabled people—a significant gesture in a context where eugenics continues to haunt us all. Even amid the pandemic, artists pointed to the accessible, online disability arts practices that flourished during the province-wide lockdowns as a resistance to isolation long felt by disabled people, and that nondisabled people were also beginning to experience.¹⁰² We note with concern, however, that the process of becoming part of the disability community and benefiting from its life-giving ethos also involved complex experiences of disclosure, and a continual grappling with the choice to live or die, as Emily describes. These concerns are compounded by research that suggests that disabled artists in Canada face increased barriers to artistry, such as lack of access to mentorship, communication barriers, disconnect to wider arts communities for those artists working outside of urban areas, and inadequate funding structures.¹⁰³ In Ontario, uncertainty remains about how ODSP impacts the acquisition of arts grants, which can prevent some artists from applying.¹⁰⁴ Although regional and provincial organizations, including the Ontario Arts Council and Workman Arts, have engaged in advocacy that supports artists in procuring income, state support, and arts funding simultaneously, such actions do not entirely resolve the lingering barriers named above. And, while Canada’s disability art scene is undoubtedly flourishing and achieving major advances in disability, Deaf, and mad artistry on a global scale,¹⁰⁵ this movement remains somewhat inaccessible to some of the artists interviewed for this project. This distance from the wider movement is connected to the necropolitical structures that govern all disabled people in Canada. Ultimately, Berlant takes up such population management as a way of diverting threats against the “good life”—a concept unignorable in a sustainable livelihoods approach that asks how disabled artists’ lives are made livable.¹⁰⁶

Conclusion

With the above interviews in mind, we characterize the lived experiences of disabled people in Canada as death experiences under a “uniquely MAiD ideology” that extends necropolitical capitalism. The lived experiences of disabled artists featured in this paper are rife with the personal and political complexities of disposability, dignity, and resistance. This research demonstrates that questions of livelihoods for disabled artists must contend with the ableist realities of Canada’s necro-economy and the ongoing affects of eugenics. These realities are complex, as demonstrated here by artists who are sustaining themselves by engaging in their artistry as life-giving praxis, thereby securing the necessities of life and establishing their sense of well-being.¹⁰⁷ If we widen our gaze to consider how the necropolitical capitalist economy speeds up “slow death” for some, we can, as Tony Sandset suggests, understand the creation of death-worlds through the opening up of MAiD to all disabled people as a state of “acceptance” rather than “exception.”¹⁰⁸ The current state of MAiD in Canada, wherein death is positioned as a right and “accommodation,”¹⁰⁹ offers a glimpse at how the neoliberal-ableist rhetoric of assets versus liability and “choice” supports the creation of necropolitical death worlds where disabled artists in this study find themselves positioned. We assert that future research related to the lives and livelihoods of disabled artists, and all disabled people in Canada, must be considered in the context of the death-world necro-economy that actively seeks to contain and eliminate disabled populations.

Acknowledgements

We gratefully acknowledge the artists who participated in this research and generously shared their experiences and knowledges with us, as well as the many disabled and crip artists across Canada who are no longer with us. This research was supported by funding from the Social Sciences and Humanities Research Council of Canada (SSHRC) through the Disabilities and Livelihoods in Canada: Partnership, Knowledge Sharing, Roles & Responsibilities Partnership Development Grant (2018–2021, Grant #890 2018-0004) and the Bodies in Translation: Activist Art, Technology, and Access to Life Partnership Grant (2016–2023, Grant #895-2016-1024).