NPA meetings take place at VANDU, on East Hastings Street in the DTES. The NAOMI clinic was also located in the DTES. Although it was not always so, today the Downtown Eastside of Vancouver is Canada’s poorest urban neighbourhood. According to the city of Vancouver, the DTES includes Gastown, Victory Square, Strathcona, Chinatown, industrial lands, and the Oppenheimer and Thornton Park areas. Just over 18,000 people live there pp. 6,3. It is a racially diverse population of Aboriginals, Asians, Latinos/as and Caucasians p. 9. The DTES has a number of single-room occupancy (SRO) establishments and a visible street scene p. 14. The street scene is directly related to cutbacks at the federal, provincial, and local levels, leading to poverty and a lack of social housing and private space. Gentrification of the area has also made it more difficult for long-time residents to find safe, permanent, and affordable housing. For women, especially First Nations women, the DTES is also the site of much violence, often linked to the sex trade, but more generally, to everyday life p. 25,[4–6]. The negative outcome of drug prohibition and the criminalization of heroin, cocaine, and other drugs is played out on the streets daily. Prohibition fuels an illegal market and, unlike in more privileged neighbourhoods, drug use and selling is more visible on the street in the DTES instead of hidden behind closed doors. This situation makes people more vulnerable to unwanted police attention and prison time, and sometimes drug-related violence p. 24.
It is well documented that drug prohibition, a reliance on the criminal law to eliminate illegal drug production, selling, and use, has worsened the health and well-being of drug users. The results of prohibition include increased imprisonment and the undermining of health services, including prevention and treatment services that would more effectively counter HIV and Hepatitis C epidemics and drug overdose deaths. Effective countermeasures are undermined. (For example, Insite, the safe injection site in Vancouver, was challenged by the federal government which actively sought to close it down and challenged its legitimacy in court despite scientific evidence demonstrating its effectiveness.) Prohibition also fuels social and legal discrimination and stigma, and the marginalization of people who consume illegal drugs. Globally, law enforcement and civil initiatives over the last 100 years have led to increased incarceration, prison building, and the infringement of human rights. Recently in Canada, the Conservative federal government enacted mandatory minimum sentencing for some drug offences. In March 2012, Bill C-10, the Safe Streets and Communities Act, was enacted.
The individual and social costs of this Act could be immense: families may be torn apart when parents are sentenced to prison; children may be apprehended by the state; and the loss of income for families may leave many destitute. At the weekly meetings, the NPA see daily that it is the poor and marginalized who suffer the most under prohibition; they, not an imagined “drug king pin,” are arrested, convicted, and sent to prison. Yet, prohibition is not uncontested. In the 1990s activists in the DTES came together to challenge the status quo and they continue to do so today.
The DTES gained national and worldwide attention in 1997 when a public health emergency was declared in response to the growing rates of HIV, Hepatitis C, and overdose deaths in the area. Stemming from those events, community activists played a major role in a social movement for change in the DTES, demanding an end to drug prohibition, more social supports, and the establishment of more harm reduction services, such as a safe injection site.
VANDU also emerged in 1997, the first drug user union in Canada. VANDU has long advocated for their members and for change in the DTES and to Canada’s drug laws and policy. Due to these efforts and those of other community activists, the DTES has witnessed some changes since 1997. VANDU secured a permanent site and offers support, education, and advocacy for group members. Needle exchange expanded, the Portland Hotel Society provided more housing for people with addictions and/or mental illness, the first safe injection site, Insite, opened its doors in 2003, and a heroin prescription trial, NAOMI, opened its doors in 2005. Yet, for many residents, especially people who consume illegal drugs such as heroin and crack, the social conditions of their lives barely changed. Lack of affordable and safe housing, poverty, racial profiling, criminalization, violence, drug prohibition, and discrimination continue to shape the lives of people living in the DTES.
At the same time that activists in the DTES have striven to improve the conditions of people’s lives in the area and to advocate for change, health and social science researchers began to conduct studies in this area and many of the residents became research subjects[6, 10–16]. Many of these studies made clear empirically what the residents already knew: a myriad of health and social factors detrimentally shape the lives of people in the DTES.
NPA members wanted to conduct their own research, in part because they had participated as research subjects in the NAOMI trial. However, for many NPA members, the NAOMI trial was not the first study in which they had participated. In the DTES of Vancouver, one of the only ways to access services or to make ends meet is to become a research subject. Research honorariums, bus passes, stipends, and for a short period, access to unadulterated legal heroin, are now familiar exchanges in the DTES.
In 2005, the Canadian HIV/AIDS Legal Network published, “Nothing About Us Without Us” – Greater, Meaningful Involvement of People Who Use Illegal Drugs: A Public Health, Ethical, and Human Rights Imperative. This booklet responded to the negative impact of programs and research studies on people who use illegal drugs, including the participants’ exclusion from the development of studies, programs, and services. This booklet includes a manifesto by people who use illegal drugs: the authors recommend greater involvement of people who use drugs in the programs and services that affect their lives, as well as in broader policy and advocacy work on HIV/AIDS and Hepatitis C. A recent 2011 report by the World Health Organization and UNAIDS, Ethical engagement of people who inject drugs in HIV prevention trials, echoes the recommendations by Canadian HIV/AIDs Legal Network. They also recommend that research populations “participate in a meaningful way in each stage of a trial, including the earliest stages during which a study is conceptualized and research protocols are developed”, p. 7. In addition they recommend that all research subjects continue receiving treatment at the end of a trial if the care and treatment are effective, p. 26.
The issues surrounding research, ethics, and exploitation have long interested drug user groups and activists because they have themselves become research subjects or witnessed others participating in trials and studies (further on we highlight Dan Small’s and Ernest Drucker’s concerns about these issues in relation to NAOMI). Dara Culhane, a researcher and long-time resident in the DTES, also critiques the ethics of some of the research conducted in the DTES. She is critical of “data-mining,” which she defines as “researchers using research subjects principally as means to researchers’ ends”, p. 260. She argues data-mining has become a “central dynamic in everyday encounters between researchers and researched” in the DTES even though residents have strongly protested against these interventions, p. 260. In the section below we draw extensively from Dara Culhane’s recent 2011 article published in Anthropologica.
Culhane notes that the DTES has become an “internationally renowned centre for medical and pharmaceutical research on HIV/AIDS and addiction” dating back to the public health crises in 1997, p. 261. She explains that along with harm reduction services came clinical trials (including NAOMI) and studies to prove their effectiveness and thus, “a research industry expanded dramatically” in the DTES, p. 261. Yet the social conditions of people’s lives there have for the most part worsened.
Culhane questions the role of many marginalized people in the DTES “to serve as research subjects” in varied social science studies, clinical trials, and art projects. She argues that for marginalized people, “access to public support and private philanthropy increasingly demands performing” and telling one’s story in exchange for “food, housing, health care, attention, affection, compassion and belonging.” Researchers, of course, benefit from “grants, publications, tenure and promotion”, p. 262. Culhane writes that the stories told are true and the pain they reveal is real. Many DTES researchers try hard to be ethical; however, the conditions of poverty and exploitation in which studies take place challenge researchers to find ways to support research subjects' autonomy and self-determination within projects themselves and within society as a whole.
Because people living in the DTES need income and services, these needs shape how their stories are told to researchers. Responding to these events in the DTES, the NPA decided to conduct their own research, to tell their own stories, in their own words. They adopted the principles of collaborative research and “Nothing About Us Without Us
]. These research perspectives offered an approach to make visible the experiences of the NPA members. These perspectives also emphasize “research for social change” and policy relevance[20
]. During the research process, the issues of participation, ethics, and consent were discussed by the NPA. In these pages the NPA asks their readers: how can there be consent to participate in studies, to tell one’s story, including participation in the NAOMI clinical trial, when the social conditions of people’s lives are so compromised? How can research be initiated and guided by the experiences and knowledge of those most affected by drug prohibition? The NPA members speak to these issues and others in the following pages. In the fall of 2011, VANDU, including members of the NPA, created further guidelines and principles for researchers working with VANDU and the NPA. They note that research is conducted against the backdrop of the war on drugs:
The drug war didn’t start because of a lack of research or “bad” research and we don’t think it will end because of “good” research. The active struggle of people oppressed by drug war policies and fighting for their liberation will be the decisive factor in ending the drug war. Researchers can play a positive role when they act as supporters, allies and partners of this movement for liberation.
Research is political. Research is shaped by funding, by the career aspirations of researchers, by the political tendencies of research institutions, by government funding and intervention, by peer pressure and by class, racial and gender biases.
The relationship between the researcher and the researched is not in and of itself empowering or liberating. It only becomes so when organized movements of the oppressed group play an active role in shaping and carrying out the research.
Researchers should leave the organizations of oppressed people that they work with stronger than when they came in; if they don’t, they are part of the problem and not part of the solution.
The NPA adopted the words below to further guide their own research. They are written by long-time DTES activist, historian, and poet Sandy Cameron, and are an excerpt from his poem, Telling Stories.
We need to tell our own stories.
If we don't tell our stories,
people with power
will tell our stories for us.
It is from this place that the NPA began their own research, to tell their own story in their own words. This paper also provides a brief history of Canadian drug policy and heroin-assisted treatment in order to contextualize the NPA’s experience.