Collaborative Research and Honouring Alexandra de Kiewit
Written by Brandi Abele, Matt Bonn, and the CRISM PWLLE National Working Group
We are devastated by the loss of one of our group members, Alexandra de Kiewit.
Alexandra was incredibly intelligent, a passionate activist, and brought humour and warmth to our work. She was an internationally recognized expert in the fields of drug use, sex work, HIV/AIDS, hepatitis C, and harm reduction. She wrote reports and academic manuscripts; presented at conferences and in webinars; spoke to the United Nations; and contributed to countless other projects and outputs. Alexandra was strong and powerful and fought for what she believed in.
While it is impossible to capture the full scope of her impact here, we want to provide a detailed look at some of the extraordinary work that would not have been possible without Alexandra.
Harm Reduction Nurses Association — An open letter to federal party leaders re: Election 44 and Canada's poisoned drug supply
Webinars and Presentations
Association Québécoise pour la promotion de la santé des personnes utilisatrices de drogues (AQPSUD): 10 years of AQPSUD
Détours en cours : Un podcast sur l'accès aux soins VIH au Québec
Harm Reduction International 2017 Conference: User activism and resistance
Harm Reduction International 2017 Conference: Closing ceremony
International AIDS Conference: AIDS 2022
This list of Alexandra's work is not comprehensive — collecting the body of work of people with lived/living expertise of drug use is challenging, because our work is often conducted anonymously or not acknowledged as work, paid as work, or treated as work. Instead, our contributions are considered "advisory," "participatory," or as "consultation." We do not receive the compensation that we deserve — not wages, nor benefits, nor pensions — that accounts for our education and expertise. We are expected to present to big rooms full of important people, to discuss personal experiences of drug use, sex work, HIV/AIDS — the most condemned and despised and stigmatized topics — and continue interacting and working with these people. And yet, we are often paid in low-denomination gift cards (to Starbucks).
This issue is painfully evident when reviewing Alexandra's body of work. Her voice was loud and proud and strong. Yet powerful people often gatekeep recognition and diminish contributions of people with lived expertise by denying credit for their work. Most projects listed above do not list Alexandra as an author or a co-investigator — rather, her input is often tacked on as a "thank you" or acknowledgment. Yet, contributions by her and people like her are critical — as without them the work would not resonate or be complete. We hope including some of Alexandra's work (above) acknowledges part of her enormous life and international impact.
This is hard work. We shape entire research projects — we identify urgent research questions; we assist in developing hypotheses; we guide decisions on the appropriate data collection methods and tools, on who to include and where to find them, on finding unbiased samples; we recruit participants and administer surveys; and we write up the final products. Without people with lived/living expertise and community partners, research would not be possible. Without us, policymakers, stakeholders, academics, and health professionals wouldn't be able to get responses to their questionnaires or interviews. Without us, they wouldn't understand the nuances or context of their research. Without us, they wouldn't be able to create their learning tools, programs, and reports. Without us, there is no project.
We admire Alexandra beyond words.
People with lived/living expertise have created multiple guides on how to respectfully work with their communities (see Peerology; Hear Us, See Us, Respect Us: Respecting the Expertise of People Who Use Drugs; and Research 101: A Manifesto for Ethical Research in the Downtown Eastside for some examples). We hope that policymakers, stakeholders, academics, and health professionals will use these guides to ensure that people like Alexandra are compensated properly, that their work is appropriately acknowledged, and that all projects are conducted ethically and in partnership with their communities.