"The HIV stays at home"?: Accommodating HIV while working outside of the HIV sector
Apart from that, I wouldn’t say that HIV stops me from doing my job. Yea? The HIV stays at home.
While Because She Cares began as a study focused on employment in the HIV sector, as I meet with more African, Caribbean and Black (ACB) women living with HIV, our discussions revolve around employment in general, including employment outside of the sector. A salient theme of these discussions: if I work outside the HIV sector, can HIV “stay at home”?
Some concerns ACB women living with HIV have raised around employment included the fear of discriminatory treatment, including lost employment, if their status is revealed to their employer. Melissa Perri and others (2021) recently reported that the fear of inadvertent status disclosure through the use of drug benefits continues to be a salient fear of people living with HIV/AIDS (PHAs) entering the workforce. Other concerns are the potential difficulties of accommodating the mental, physical, and cognitive health-related aspects of HIV, such as the need for time off for doctors’ appointments and extended time off due to illness (Perri, 2021; Wise, 2021). For ACB women, these fears of HIV stigma and ableism intersect with other systemic barriers they face as racialized women living with an episodic illness, including gender-related barriers, institutional racism, and Canadian credentialism limiting equitable access to meaningful employment.
While many PHAs work outside of the HIV sector, recent studies suggest more work needs to be done in workplaces outside of the HIV sector, including anti-stigma education and a women-centred approach to work that recognizes the intersections of HIV, gender, race, and immigration status in the delivery of workplace accommodations. We also need to ensure ACB women living with HIV know their rights to non-discriminatory employment as per The Ontario Human Rights Code. Equitable employment for ACB women living with HIV is not only a social determinant of health; it is a human right.
“Maya’s” poem, “The HIV stays at home” hints at the multiple dimensions of HIV stigma when working outside of the HIV sector. What resonated for me was “Maya’s” careful navigation of her employment through self-designed work accommodations. She also constantly worried about status disclosure. This poem illuminates Maya’s desire to ensure that HIV did not define her or her employment; nonetheless, HIV continues to be a pervasive presence in her working life outside of the HIV sector.
“THE HIV STAYS AT HOME” by Maya*
Most people I have talked to Work in the HIV field. They CAN DISCLOSE. Everybody at THEIR WORK is talking about HIV. For THEM to talk about their status? Nothing new.
But, For me working outside of the field I don’t even talk about it. Don’t know if other staff even know. I haven’t discussed my status with anybody I work with. I don’t know. Is there a requirement for me to disclose? Apart from that, I wouldn’t say that HIV stops me from doing my job. Yea. The HIV stays at home.
But there are some times, when I’m not feeling like myself. When I get overly emotional. I think my behaviour can come out like I don’t, I’m not really, COOPERATIVE with other people. But it's not how I intend …TO BE. It's coming from somewhere else And because my work colleagues DON’T UNDERSTAND. I’ll devise my own work accommodations. I work shifts where I don’t have to deal with as many people That way my stress levels are LOW. Apart from that I wouldn’t say that HIV stops me from doing my job. Yea? The HIV stays at home.
Work health insurance? THAT’S another thing. I no longer use mine. There was one time where I had to claim through work. I worried. Would they realize what that medication was for? It was a one-time thing though. Maybe they didn’t notice?
But if it WAS on a monthly basis, Would they start to wonder? What medication is she taking? Why is she taking it? What does she have?
At my workplace, it's a guessing game. To claim or not claim. To disclose or not disclose. Apart from that I wouldn’t say that HIV stops me from doing my job. Yea. The HIV stays at home.
*Pseudonyms used to maintain the confidentiality of the Narrators.
For more information on HIV and Employment:
Two recent articles on HIV and Employment are cited below:
Perri, M., Craig-Neil, A., Gaspar, M., Hunter, C., Kendall, C., Alexander, O., & Pinto, A. D. (2021). A qualitative study of barriers to employment experienced by people living with HIV in Toronto and Ottawa. International Journal for Equity in Health, 20(1), 36. doi:10.1186/s12939-020-01356-4. https://rdcu.be/cJJyo
Wise, J. M., Vance, D. E., Heaton, K., Raper, J. L., Konkle-Parker, D., Azuero, A., & Kempf, M.-C. (2021). Employment and Occupational Productivity Among Women Living With HIV: A Conceptual Framework. Journal of the Association of Nurses in AIDS Care, 32(1), 37-46. doi:10.1097/jnc.0000000000000202.
For more information on protections against discrimination based on HIV/AIDS status in Ontario, refer to the OHRC policy on HIV/AIDS-related discrimination: https://www.ohrc.on.ca/en/policy-hivaids-related-discrimination