Lectures

“Nothing About Us Without Us!” Really?: The Unequal Value of Lives in Harm Reduction NGOs

This article is part of the series:

Canada, like most capitalist societies of the global North, faces “an unprecedented and devastating wave of overdoses” and overdose deaths (Wells, 2017), intensified by the COVID-19 pandemic (Government of Canada, 2021). In the summer of 2017, activists including people who use drugs (PWUD), allies, and nurses in Ottawa responded to this wave of overdoses by establishing the city’s first unsanctioned overdose prevention site (Kupfer, 2017)[1]. These activists, many of whom had been part of “grassroots Harm Reduction efforts” in Ottawa for many years, declared the aim of the site was to provide a safe space to use drugs, contending they “knew people were dying and the authorities charged with protecting some of society’s most vulnerable were failing to react” (Jeffries, 2019, para 4). Non-governmental organizations (NGOs) in the field of overdose prevention emphasize that drug use is a health issue and not a political issue; an issue to be addressed by care and compassion, and based on an ethical and human rights imperative that recognizes the dignity of PWUDs instead of treating drug use “primarily as a criminal law issue” (Canadian HIV/AIDS Legal Network & International HIV/AIDS Alliance, 2008, p. 7). This perspective has been affirmed by the Supreme Court of Canada (see Canada [Attorney General] v. PHS Community Services Society, 2011). However, harm reduction (HR) activists present HR as the result of the resistance and struggles of PWUD against repressive state drug policies, and they emphasize that HR is based on the equal consideration of every life—that every life counts—both outside and inside humanitarian organizations that manage HR programs.

In mainstream and official government discourse in Canada  “opioid crisis” and “public health emergency” have become the go-to terms for discussing the rise in opioid deaths. However, these terms elide the broader societal conditions and transformations which systematically increase the precariousness of certain lives. Conceptualizing HR in this way transforms PWUD into a public health concern and foregrounds people’s physical and biological existence by emphasizing their responsibility to be healthy. In doing so, HR “transform[s] drug users from pathological deviants to public health citizens who care for themselves and others” (Vitellone, 2017, p. 1), situating HR between two poles: the biopolitical and the humanitarian. The biopolitical pole conceptualizes drug use as a public health problem, emphasizing the biomedical risks and negative health consequences of drug use; individuals can make responsible choices to live healthier lives without abstinence from drugs. This understanding of health is based on population-level epidemiological data with the underlying morality of HR resting on the foundation of scientific, “objective,” and “evidence-based” approaches to drug use (Larocque & Foth, 2021; Miller, 2001). The second pole, humanitarianism, is based on the moral imperative to save lives; in this conceptualization, life is a sacred value above all others; every life counts. The humanitarian conceptualization of life transforms PWUD from criminals to people whose “naked” life (understood as biological life, i.e., the bare fact of simply being alive) must be saved at all costs (Agamben, 1998; Arendt, 1973; Benjamin, 2004). In other words, HR combines public health policies with humanitarian reason to address the mortality and morbidity of those engaged in behaviours considered to have negative health outcomes, which foregrounds the physical and biological existence of individuals engaged in drug use. In other words, the biopolitical pole reinforces the primacy of biomedical definitions of health, and the humanitarian pole foments this through an emphasis on saving lives, which are de facto defined as biological, naked lives.

Canada’s current federal drug use policies draw on principles for HR laid out in a 2005 publication that promotes equality and recognition for PWUD entitled “Nothing About Us Without Us: A Manifesto by People Who Use Illegal Drugs” (Canadian HIV/AIDS Legal Network et al., 2005). A key principle is that PWUD should guide the roll out of programs and decisions on priorities within organizations. To address these principles, organizations hire PWUD as peer workers[2] and actively promote peer engagement as a cornerstone of HR work (Boucher et al., 2017; Marshall et al., 2015). It is important to note that, although these peer workers are called PWUD, in some organizations they must be clean (meaning they no longer use drugs) and housed for at least a year before being hired. They first go through an informal voluntary period of service (usually cleaning duties in and around the consumption site) to demonstrate they are trustworthy and responsible enough to work as peers. Once hired, PWUD are paid, volunteer, or are incentivized as peer workers in a variety of roles and activities to benefit the organization’s aims (Greer et al., 2020). Peer engagement capitalizes on the lived experiences or “expertise” of PWUD to “enhance relevancy” of programming and services (Greer et al., 2020). The stated logic of peer work is the “process of engaging people who use drugs, or peers, as active experts in policy, programming, and decision-making arenas” (British Columbia Centre for Disease Control, n.d.). It appears paradoxical and tokenistic to include peer workers based on the very fact that they are PWUD yet require them to be “clean” — all lives are valued equally, so long as they are clean and responsible! 

1. The Hierarchization of Lives Within a Harm Reduction Organization

In this post we argue that despite the assertion by HR proponents that every life counts equally and their impassioned pleas that HR treats everyone with “dignity and respect” and offers “compassionate care” that “saves lives,” the moralistic language of humanitarianism obscures the everyday political, social, and material experiences of PWUD; this reproduces a hierarchization of lives, even within humanitarian NGOs. Drawing on empirical data from an ongoing participatory research project[3] examining the intensifying burden of the COVID-19 pandemic on HR workers, we argue a hierarchization of lives exists within organizational contexts. In particular, PWUD employed as peer workers at HR organizations must accept (or are subjected to) working in far more precarious conditions than other employees in the organization, underscoring the concept that not all lives are equal in humanitarian organizations.[4]  As PWUD, peer workers lived experience mean they are constantly exposed to triggers that put them at risk of profound suffering and what participants called relapsing — returning to drug use. They have minimal to no financial, emotional, or operational support, and their working conditions prevent them from living meaningfully different lives than those of their ‘clients’. These conditions are the consequence of a profound paradox of the humanitarian approach to HR, which emphasizes the value of every life without addressing the systemic inequalities underpinning the unequal valuation of lives in our societies.

1.1           Financial Precarity

Many peer workers experience chronic financial precarity, despite their employment at a HR organization. For example, a peer worker we interviewed explained: “I often have this conversation with my clients, where I’m like hey man, I’m really not that far from where you are in life. Like, you know, if for whatever reason, I did not have a full-time position with [REDACTED LOCATION] and I had to take like weeks off work because I was sick or whatever the case is, well bills still have to be fucking paid, rents still gotta get paid, you got to eat, you got to do that. Like, there’s so many things that factor in, and I’m pretty sure like, after one or two paycheques of not making money, I’d be in the fucking hole just like a lot of my clients. I would be staying in shops […]. Like, it’s crazy that we work so hard, you know, to be that support system for a lot of our clients and to make this ship run entirely and stay afloat, but we can barely manage our own lives, you know?” (P012). As a result, most peer workers have no choice but “to work there full time because that’s our living I guess” (P007), despite knowing that “being there all the time is, is not good. Like… no one lasts there for a long time” (P007). Further, the benefits they may receive are few and infrequent often “used within a month or two…”, just “enough to get my foot through the door, but a lot of it I had to do myself” (P007). Another participant stated: “I feel awful for those who are starting a job here, because there’s no… there’s no space to be tired or upset or sick, or anything. Like there’s really no more space for that anymore.” (P012). In addition, peer workers’ salaries do not cover the basics to live and are just above the minimum wage: “[T]here’s no way to be able to live on your own. So, what, you’re living with, four other people in an apartment, you know, you’re worried about your bill, like it’s just crazy. Like, it’s not—like you don’t—there’s no way of catching up or, you know, living somewhat comfortably on what we get paid. And we’re considered to be paid a livable wage, which makes me laugh.” (P012). It is clear from these accounts that organizations benefit from the emotional and material labour of peer workers, without adequate financial and psychosocial support. In sum, peer workers are exploited to tokenistically fill the mandate of Nothing About Us Without Us.

1.2           Lack of Support

For peer workers, not only is their work environment fraught with an onslaught of triggers, suffering, deaths, and increased levels of stress, it is also often the environment where they themselves once used. Compounding their financial precarity, the nature of peer worker’s work environment/s places them at the added and constant risk of beginning to use drugs again (what peers called relapse). One participant described that when their “relapse happened … I was a total mess for like three or four months. And then I started, you know, diving deeper into therapy and stuff and, and then that’s where I kind of started coming out of the woods. But it literally took a full-on burnout and relapse to get me to this place.” (P011). Whereas professional caregivers such as nurses or social workers receive, at least, minimal education in stress management and so-called self-care techniques, a peer worker reported that “you come in you do like three shadow shifts and then you’re kinda like fed to the wolves like you’re like here you go. […]and then you’re just all of a sudden like scheduled every day of the week right there all over the place.” (P004).

Despite being in a work environment that puts peer workers at particular risk of burnout and mental health issues, (compounded for peer workers because of their lived experiences as PWUD), the organization does not provide support; “it sucks because it really comes down to us having to find that support, right? Finding therapy or finding counselling or finding this.” (P011). To meet their HR mandate, the organization hires people with “lived experience,” but does not recognize that “lived experience just basically means trauma. And that doesn’t mean we’ve dealt with it or even looked at it. Like many of us just bury it. [We need help] Finding proper self-help classes and things like that giving us tools to develop ourselves as opposed to being solely focused on the client.” (P007). Many peer workers expressed a desire to address the effects of their lived and traumatic experiences through counselling and other therapeutic interventions, but are unable to access such forms of care: “I would absolutely love to see therapists [to] be able to dedicate just some time […] have like one session a month or something […] just something where I don’t have to worry about what’s coming out of my pocket […] I’m still struggling to pay the bills. And so, to invest in myself is not top priority, or may not be top priority if I’m thinking of somebody else, right?” (P011).

In other words, the organization benefits from the traumatic lived experiences of peer workers without providing assistance to help them cope with their trauma: “The majority of us have been through some form of recovery or are in recovery, and it’s hard, right? Because that’s where head goes to first, like let’s just fucking use.” (P012). Peer workers not only work in much more precarious working conditions than most of the employed staff, they also “have to put up with the risks and the, you know, the mental issues. …. But you know, it’s a tough job, like we know it is, and we know it’s going to take a toll on us mentally with all the death and this, you know, this COVID situation and everything.” (P013). Thus, despite increased susceptibility to burnout, relapse, compassion fatigue, etc. peer workers find themselves in vulnerable work situations with no mechanisms to help them cope with these situations.

1.3       Normalizing Overworking

While administrators and managers work a Monday to Friday schedule, a peer worker we interviewed emphasized that even before the COVID-19 pandemic, peer workers “were giving it their all, they stretched it and gave more than 110% and they were giving 100% at that time right, so you know, and that’s like missing breaks, missing lunches you know, coming in early staying late.” (P017). Despite their vulnerable situation and despite receiving no support, peer workers described a constant pressure to work, as participant P007 summarized, “I’m gonna get fired. Like I’m gonna make mistakes, and I’m gonna stop caring, and I’m gonna lose the job. And I won’t be able to help anyone at that point. And I’ve actually lost a lot of colleagues to that lately.” (P007). Therefore, not only do organizations benefit from peer workers’ labour at baseline, but there is also an intensification of this exploitation in the form of normalizing a culture of overworking, as summarized by participant 009: “You know, there’s a lot of looking down on people who call in sick a lot.”

1.4       Surveillance

Not only did our peer worker participants describe a lack of formal support even though “it’s a high-stress job and everybody is on like high alert all the time,” there is also “no support from management” (P017). Some peer workers described not seeing or speaking to their supervisors “maybe I wanna say in a year or maybe a dozen times” (P017) and others stated, “you don’t hear from management unless you’re in trouble, or someone dies. The only time we talk to them” (P007). Rather than receiving any meaningful support from management, peer workers described feeling as though they were under constant surveillance. Descriptions of their work environments were often reminiscent of Foucault’s Panopticon (Foucault, 1995), with closed-circuit surveillance and a continual fear of being disciplined. Peer workers believe they should not speak “freely” and, if they did speak up, “it would be held against them in some way shape or form, and that, you know, is as a result of people feeling like they’re being spied on. You know there’s cameras everywhere where we work, and you know that’s a kind of creepy feeling to be always being watched.” (P017). This surveillance further underscores how nothing is done to challenge or mitigate the underlying factors which place peer workers at the bottom of the hierarchy of lives; peer workers are underpaid, unsupported, overworked, and surveilled.

2. Discussion

2.1           The humanitarian paradox

The data supports our assertion that the humanitarian imperative of HR is based on a paradox: the imperative to save bare (or biological) lives (Agamben, 1998) takes precedence over addressing systemic inequality. The dismantling of, and disengagement with, the provision of social services by neoliberal governments has resulted in a “Non-Profit Industrial Complex” wherein NGOs try to provide support in areas left destitute by governmental policies (INCITE!, 2017). It seems that the only subject position available for those who are against what can be called the increased coercion of PWUD is humanitarianism, which invokes ideas of compassion, empathy, and benevolence. For our argument in particular, the “NGOization” of HR is a conservative and anti-political approach to the management of the “opioid crisis” which acts in the name of crisis and does not seek to change the status quo. For opioid overdose deaths, NGOs provide a particular form of “emergency medicine” (Ticktin, 2011, p. 64) based on an anti-political moralism that creates or maintains a “two-tiered medical and social system, where some people get basic health care and social services and others only get them in situations of crisis or emergency” (Ticktin, 2011, p. 84). As Ticktin contended, “[h]umanitarianism provides little room to feel and recognize the value of particular lives (versus life in general), or to mourn particular deaths (versus suffering in general), and little impetus to animate political change” (Ticktin, 2016, p. 256). To better understand this paradox, we will discuss our findings with anthropologist Didier Fassin’s concept of biolegitimacy (Fassin, 2009).

2.2           Unequal Value of Lives and Biolegitimacy

Fassin (2009, 2018) makes an important distinction between life itself and life as such. Life itself is the biological fact of being alive and is linked to biopolitics (Foucault, 2003, 2014). In contrast, life as such is about life as an accumulation of events that are influenced by politics, health and social policies, cultural interpretations, and moral decisions; it is life lived through both the body and as society, rather than as living cells in a population (Fassin, 2018). What is important to recognize is that in our societies the sacredness accorded to biologic life (life itself) takes precedence over the political life (life as such). This has been particularly visible throughout the COVID-19 pandemic where practically all governments in Canada and around the world imposed states of emergencies in the name of saving life itself—or biological lives—suspending even basic liberties in the process. The power of life itself, or the sacredness of life, is what Fassin described as biolegitimacy. In contrast to Foucault’s (2003) biopolitics, biolegitimacy is not only about tactics and strategies of controlling life such as identifying risks, normalizing and regulating ‘healthy’ behaviours, and implementing the technologies to achieve these ends (power over life itself), but also about how humans are treated and how lives are valued differently (power of life itself). When humanitarian reason is used as the rationale, biological resources become political resources and the primacy of biological life, or life itself, forms the basis of political action. From the perspective of life itself, the perception is that PWUD employed as peer workers have successfully and responsibly made the choice to live in abstinence and save the lives of people who are still using. However, from the perspective of life as such, peer workers are treated unequally, and frankly exploited, despite the organization in our study promoting equality.


Catherine Larocque (RN, MScN) is an Indigenous PhD student in nursing at the University of Ottawa. She has worked clinically in both maternal newborn care and harm reduction. Currently she is working on her doctoral thesis which is a critical history of Knowledge Translation. Her research interests include nursing theory; critical theory; post/decolonialism and politics of recognition; neoliberal transformations of the healthcare system and society in general. Twitter: @cate_lar

Thomas Foth is an associate professor and his fields of interest include history of nursing, critical theory, philosophy of science, queer and crip theories, postcolonial and decolonial theories and practices, as well as critical accounting. He sees theoretical considerations as part of praxis that aims to change the status quo of nursing and our society in general.

Wendy Gifford (PhD, RN) is Full Professor at University of Ottawa Faculty of Health Sciences School of Nursing; Loyer-DaSilva Research Chair in Community and Public Health Nursing; and Co-Director of the Center for Research on Health & Nursing.  Her program of research focuses on promoting health equity with disadvantaged and marginalized groups, with a particular focus on working with Indigenous peoples.  She recognizes that healthcare in Canada is founded on settler systemic racism that continues to harm Indigenous people today, which has increasingly situated her research within critical decolonizing methodologies and approaches. 

Notes

[1] INSITE, Canada’s first unsanctioned Supervised Consumption Site (SCS), opened in 2003 in British Columbia. In 2008, the Supreme Court of Canada affirmed its right to remain open. Federal policy enacted in 2016 allowed sites to apply for exemptions from the Controlled Drugs and Substances Act to operate SCS. One application from Ottawa was accepted after fierce opposition from municipal politicians but was not to open until late 2017.  Thus, the “pop-up” and “unsanctioned” site we discuss was the first SCS in Ottawa. In the intervening years, the mandate of the “pop-up” site has been taken over by NGOs which are now funded in part through municipal and provincial grants. See Kerr et al., 2017.

[2] For clarity, a peer worker is a PWUD who is engaged in some capacity (e.g., paid, incentivized, unpaid) by HR organizations specifically in light of their lived experience of drug use. They fill a variety of roles such as direct client care, counselling, advisory board consultations, etc.

[3] This ongoing research project started in December 2020 and is planned to continue until Spring 2022. This project is a collaboration with a HR organization to better understand and address the wellness needs of HR workers (working with street-involved individuals and PWUD) such as peers and nurses. We conducted a series of interviews and focus groups to better understand the stressors, working context, and wellness needs of the HR workers at our partner organization. These interviews and focus groups were collaboratively analyzed by researchers and HR workers. In this post we present quotes from peer workers that we interviewed.

[4] We unequivocally would like to emphasize that we are not criticizing the organization where our data emerged. Rather, findings support the systemic inequalities of humanitarian HR movements and are corroborated in recent research showing the precarity and superficiality of peer work and engagement (Greer et al., 2020; Ranger & Sesula, 2020).

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