Racism and HIV/AIDS: Impacts of Racialized Discourse on the Daily Lives of African and Caribbean Communities in Toronto, Canada F. Gardezi 1, L. Calzavara 1,2, E. Lawson 1, T. Myers 1,2, W. Husbands 3,4, E. Tharao 5,4, C. George 6,4, D. Willms 7, D. Taylor 8, S. Adebajo 1, R. Remis 1,2, F. McGee 9, E. Jacobet Wambayi 10 1 HIV Social, Behavioural, and Epidemiological Studies Unit, Faculty of Medicine, University of Toronto; 2 Department of Public Health Sciences, Faculty of Medicine, University of Toronto; 3 AIDS Committee of Toronto, 3 African and Caribbean Council on HIV/AIDS in Ontario; 5 Women’s Health in Women’s Hands Community Health Centre, Toronto; 6 St. Michael’s Hospital, Toronto; 7 Department of Anthropology, McMaster University, and CLEAR Unit, Hamilton; 8 Canadian AIDS Treatment Information Exchange (CATIE); 9 AIDS Bureau, Ministry of Health and Long Term Care, Government of Ontario, 10 Health and Life Promotion Research (HELP), Toronto.

Research Objectives Describe HIV-related fear, denial, and experiences of stigma and discrimination in African and Caribbean communities in Toronto. Understand the role of social structures in creating and perpetuating HIV/AIDS-related fear, denial and stigma.

Study Population Caribbean and sub-Saharan African communities Guyanese, Jamaican, or Trinidadian Ethiopian, Kenyan, or Somali Self-identified HIV-positive & community members at large (HIV status not identified) Women and men ages 16 and over Reside in Greater Toronto Area

Methods Semi-structured interviews HIV positive men and women from each of the 6 communities 45 to 120 minutes in length Focus groups community members at large based on gender and country of origin 90 to 120 minutes in length Interviews and focus groups were tape-recorded, transcribed and examined for emerging themes

Recruitment Flyers and postcards community agencies, clinics and hospitals Outreach/presentations at community events Referrals physicians ASOs and other community based organizations Community Advisory Committee Word of mouth

Gender and Community Distribution of Participants WomenMen Total Focus Groups African Caribbean In-depth Interviews African Caribbean Total

Characteristics of HIV Positive Participants (n=30) Majority were years old (Range = years) Average time since diagnosis = 7 years (Range = 1 month - 24 years) Average length of residence in Canada = 17 years (Range = 3 weeks - 41 years) All were born outside Canada 4 did not have permanent residence status in Canada 14 had children (2 had HIV + children)

Characteristics of Focus Group Participants (n=74) Majority were 25 – 44 years old Four were born in Canada Average length of residence for participants not born in Canada = 13 years (Range = 3 months – 38 years)

Findings Participants discussed how HIV is racialized effects of racialized discourse on African and Caribbean communities

HIV discourse is racialized “Of course some people have said that all Black people get it.” – Jamaican man (HIV positive) “I would see it as a racial discrimination because it’s like we are more connected to HIV/AIDS than any other race.” – Kenyan man

Racialized discourse continued: Individual Black people represent all Black people “I’m a Black woman with AIDS, I have to go to the hospital and probably tell somebody other than my race about it, having them say ‘oh, there we go, see, the Black community, this is what they do.’” – Guyanese woman

Racialized discourse continued: HIV is associated with differential valorization of White and Black “They say everything, chicken pox, chicken diseases come from Africa. Everything bad. Everything bad and even the war when they made, White and Black. White is good, Black is bad.” – Somali woman

Effects of Racialized Discourse Hesitance in seeking medical care Avoidance of HIV/AIDS support services Denial or silence regarding HIV within communities Fear of increased racism

Effects: Hesitance in seeking medical care “ To me the way the White looks to the Black, he sees him as a carrier of malaria and AIDS regardless of how you feel healthy and you look well. So what is even making people not to discuss or to come and tell that I’m affected or to go for a health check-up is that fear which has been caused.” – Kenyan man

Effects: Avoidance of HIV/AIDS support services “Some people really take [claims about African origin of HIV] personally…and say ‘I would rather stay at home and maybe keep going to my doctor and keep onto my medication than go to these places that are trying to be negative about everything.’” – Kenyan woman (HIV positive)

Effects: Denial and Silence “I just think the Black community does not want AIDS to be associated with coming from the continent or Haitians or the group being stigmatized like the way people avoided Asians during SARS, wouldn’t sit next to them, wouldn’t go to their restaurants. I think the Black community does not want further stigmatization.” - Jamaican woman

Effects: Daily consequences of racism “I think sometimes there’s a tendency for media to polarize it and they make it like [HIV is] in this one community. And usually where it’s gonna land are people who are disadvantaged …And what happens is that whatever comes along with it, meaning that you can’t get housing, it’s difficult to go into a bank and [ask for a loan] … you’re being judged constantly. Okay. These are the things that affect you. These are the symptoms of racism.” - Jamaican man

Conclusions : Representation and discourse around race and HIV/AIDS filter into the daily lives of African and Caribbean people, and resonate with experiences of racism and lack of access to resources. Education, policy and institutional practices responding to HIV cannot neglect the ways in which they may perpetuate systems of inequality, furthering stigma. Institutional practices and policies need to be informed by the lived experiences of African and Caribbean people and their critiques of dominant discourses.

Acknowledgements: Research participants Physicians, ASOs, Community Health Centres and other organizations and individuals who helped with recruitment Community Advisory Committee Vuyiswa KeyiBeatrice Nday wa Mbayo Senait TeclomHiwot Teffera Funder: Ontario HIV Treatment Network (OHTN), and the AIDS Bureau (OMHLC)