We Can't Breathe: Black Manifesto on HIV‑related Care
BLACK BLOG
My name is OmiSoore Dryden, and I’m the 4th James R. Johnston Chair in Black Canadian Studies at Dalhousie University. With my appointment, the James R. Johnston Chair moves into the Faculty of Medicine for the first time. I am the first queer person to hold the JRJ Chair in Black Studies at Dalhousie. These are very important and timely milestones.
Black Studies is a vast discipline which exists beyond humanities and social sciences. The JRJ Chair in the Faculty of Medicine is a reminder of this: Black studies is a necessary intervention into the field of medical education and public health in Canada and discussions of Black health equity. Medicine, medical practice, and health do not live outside of culture. The development of medical education, procedures and practices happened (and happens) within the social/cultural. Black studies in medical education and public health interrogates the parameters of what makes someone healthy and the system of health care in which we exist. The myth of racism-free field is deadly.
September 20, 2022
By Maya Lowe, Bemnet Teferi and Dr. OmiSoore Dryden
The International AIDS Conference was held in Montréal Quebec 29 July – 2 August. The theme of the conference was Re-engage & Follow the Science. It was hoped by following this theme that there would be an ability to “define future research agendas, shift latest evidence to action, and chart a new consensus on overcoming the HIV epidermic as a threat to public health and individual well-being.”
However, it has been predominately white decision-makers making decisions related to managing and ending HIV/AIDS in Canada overall and in Black Canadian communities. These decision-makers have little to no knowledge or awareness of the issues impacting and affecting Black people including how anti-Black racism exacerbates HIV in Black communities. As we know, anti-Black racism (homophobia / transphobia) and misogynoir remain deciding factors of health disparities in our communities. The infrastructure that constitutes Canada’s response to HIV reflects and reproduces white privilege/supremacy and does not do enough to change the course of the epidemic in Black communities (Dryden & Nnorom, 2021; Nelson et al., 2019).
Over the past ten years, Black HIV community members, activists, frontline staff, and researchers working in the HIV sector have called for the establishment of more radical principles and guidelines related to data management, policy development and implementation, and programming related to HIV in Black communities. HIV transmission among white Canadians has decreased substantially, consistent with the global trends in the last ten years (Haddad et al., 2021). Even though Black people account for roughly 4% of the country’s population, 2019 data identifies that Black women and men accounted for 42% and 18%, respectively, of reported cases among all women and men. In comparison, white women and men make up 14% and 38%, respectively, of new diagnoses (Haddad et al., 2021), and their share continues to fall. This data confirms that Black people bear the burden of HIV/AIDS, routinely accounting for one of every four diagnoses year after year. Although Black Canadians are overrepresented in HIV cases, Black stakeholders and communities have been relegated to a secondary or supportive role in Canadian responses to HIV among Black communities.
In January 2022, Dr. Winston Husbands, called together a group of Black activists, researchers and scholars; people living with HIV, and frontline workers to establish an Ad Hoc Committee on HIV in Black Canadian Communities that initiated the development of a Black (HIV/AIDS) Manifesto. The committee, co-chaired by Winston Husbands and OmiSoore Dryden includes, Josephine Etowa, LaRon Nelson, Maureen Owino, Eric Peters, Amanuel Tesfamichael, and Wangari Tharao. The work of the Ad-Hoc committee was to develop a draft manifesto that focusses on research, policy, programs, and community engagement in order to effectively change the trajectory of HIV within Black communities across Canada.
The Manifesto not only details the historical and present-day experiences of anti-Black racism in HIV-related care, research, and policy, it also serves to inspire existing institutions, research apparatus, and service providers to dismantle anti-Black racism in all aspects of their work, and to take direction from Black experiences. The Manifesto also urges stakeholders to take action beyond statements of solidarity to improve HIV-related care for Black people in Canada.
The Manifesto is intended to support and inspire Black community members who continuously navigate spaces and institutions that are generally not safe for Black individuals to speak up due to continuing anti-Black racism and intersecting experiences including misogynoir (Bailey, 2021), and anti-Black homophobia/ transphobia.
This Manifesto is a living document that provides guidelines for conducting Black-focused HIV-related research and supporting effective policies and programs for Black diasporic people. It has been developed to inspire and provide guidance for Black HIV researchers, policymakers, funders, community-based organizations, and others.
While all members of the Ad-Hoc committee were intimately involved in the writing and development of the Manifesto, it is important to recognize the labour and leadership of Maureen Owino in bringing this document to life.
The Ad-hoc committee has compiled 10 demands, a brief summary of each follows:
1. This manifesto demands that researchers, policymakers, and service providers interested in working with Black people must engage in processes and actions geared toward dismantling anti-Black racism.
2. Researchers must acknowledge the history of anti-Black racism, systematic racism, and the trauma it has caused to Black communities; and explain how the research they are conducting will assist in the dismantling of these harms.
3. We emphasize the need for more Black research by Black scholars to better understand the specific role of structural violence in vulnerability to HIV and poor health outcomes among Black communities.
4. We demand the creation of a Black scholars/researchers collective to exert some degree of control over data collection, management, access, and use, to ensure that Black people have access to their own data to address our needs and aspirations.
5. We demand a separate funding stream designated for Black researchers doing Black research. Since Black people account for one-quarter of diagnoses, research on HIV/AIDS in Black communities (led by Black researchers, in partnership with communities) must get at least 25% of HIV research dollars.
6. We call on Black stakeholders to develop a diversity of shared perspectives that are grounded in Black life in order to effectively challenge white supremacists power dynamics that further harm Black communities
7. We insist that the academy, research funding institutions, and policymakers demonstrate their willingness to meet and work with community-based researchers regardless of institutional affiliations.
8. Collaborations with Black communities must support and take leadership from Black communities and effectively demonstrate grater and meaningful involvement of people living with HIV/AIDS. These collaborations must be equitable, meaningful, and accountable.
9. We demand that researchers, service providers and policymakers engage in practices that respect and validate Blackness in all its diversity. They must ensure that the programs, policies, and services they create or develop are not simply culturally appropriate, safe, and responsive for diverse populations of Black people, but also decidedly anti-Black in all forms.
10. All research, practice and policy must be aligned with and developed using equity, social justice, intersectionality and anti-racism frameworks developed by the Black communities. Doing good research must include actionable processes that foster and support Black life, embody anti-oppression and anti-racism and work towards shifting power relations and dismantling structural violence.
References
Bailey, M. (2021). Misogynoir Transformed. In Misogynoir Transformed. New York University Press.
Dryden, O.H. and O. Nnorom (2021). Time to dismantle systemic anti-Black racism in medicine in Canada. Commentary, Canadian Medical Association Journal. (January 11, 2021). CMAJ January 11, 2021 193 (2) E55-E57; DOI: https://doi.org/10.1503/cmaj.201579. Vol. 193 no. 2 E55-E57
Haddad, N., Weeks, A., Robert, A., & Totten, S. (2021). HIV Surveillance Report 2019. Government of Canada.