Living this kind of life I can’t afford to escape This is a very expensive city. How do you survive? If you don’t have a monthly bus pass, or tickets. You don’t have anything How do you work? How do you live? How do you get paid? I don’t blame other people on ODSP or OW. If they are sitting in the house, not looking for a job. Depression makes you want to sit To forget To give up.
I have held many jobs in the HIV sector: volunteer, frontline worker, research assistant, research coordinator, and community health researcher. While all these jobs inform my research interests, my job as a frontline worker pushed me to pursue HIV and employment as a focus of my Ph.D.
Anyone who has been a frontline worker in a community service organization recognizes it is a labour of love; my work was no exception. And yet, for all its labour, my frontline work was poorly paid. To subsist, I had to hold another job as a research assistant. And I did both jobs while completing my Master of Social Work degree. But I didn’t have children to feed, family back home depending on my income, or a chronic illness with substantial out-of-pocket expenses. So if I was struggling to make a livable wage as a frontline worker in an AIDS service organization, how do other African, Caribbean, and Black (ACB) women do it, particularly ACB women living with HIV?
A key concern in the HIV sector is ensuring that its employees make a livable wage. A livable wage reflects what individuals need to earn to cover their actual living costs in the communities in which they live. While the Ontario Living Wage Network uses the living costs for a family to calculate mean livable wages in Ontario cities, these amounts most likely underestimate the living costs of ACB women living with HIV. For instance, they have the additional costs of living with a chronic health condition. Employment may not provide health-related work benefits such as dental care, drug care, supplemental health care, or short-term or long-term leave (Mausley et al., 2020; Worthington et al., 2012). These costs may be numerable for people living with HIV, such as antiretroviral drug costs, allied health care not covered by provincial health insurance, or long-term health leave.
Other costs ill-considered in living wage calculations are the additional expenses for immigrant families. For instance, ACB women living with HIV may have the additional role as transnational breadwinners, yet, their precarious incomes may not be enough to sustain themselves and their transnational families.
Lastly, a livable wage presumes full-time work, which is not assured in community human service work in general, and HIV work specifically. Some people living with HIV are employed in contract or part-time positions; others work in jobs where the hours are flexible but intermittent. Given the precarious nature of social and health service work — including HIV service work — ACB women living with HIV could be gainfully employed and living in poverty (Baines, Cunningham, Campey, & Shields, 2014).
To assure meaningful engagement means livable employment for ACB women living with HIV, the HIV sector should adopt models such as the Canadian Living Wage Framework for its income policies but adapt it to consider the additional costs of living with HIV. An HIV Living Wage Framework should also consider the diversity of lived experiences of people living with HIV, including single parenthood and transnational breadwinner responsibilities. For meaningful engagement to evolve into livable employment, AIDS service organizations need to pay ACB women an income that allows them to thrive, not just survive.
In “Living this kind of life,” “Naomi” illuminates the financial precarity of HIV service work as she compares her working lives: the life she once had as a full-time employee outside of the HIV sector to the life she now has employed part-time at an AIDS service organization. In this comparison, Naomi illustrates how her working life has changed from “working hard” to waiting to work, from regular employment income to “counting the days” for her next social assistance payment, from having economic independence to having her income and spending assessed. “Living this kind of life” conveys the oppressiveness of working poverty for ACB women living with HIV who are precariously employed. It also reminds us how precarious employment can be perilous to their mental and physical well-being.
Living this kind of life by *Naomi
My grandma was the best woman. I miss her a lot. She raised me. To work hard. Her work ethic was good. We lived a really nice life. That’s why. I find it so hard. Now that I am living this kind of life.
Living this kind of life Where I am just Counting the months It’s just Waiting Wondering Counting the days? Waiting for my ODSP. AWWW One month is like one year Used to be every 14 days When I used to get paid Now it’s waiting ONE MONTH. When will this month be over?
Living this kind of life Where I don’t have any confidentiality. Every form, every paper, every request. Everything is being checked! If I worked. Every cent. If I request diabetic needles? Every request. Fill out this paper. Submit this paper. Get your doctor to sign this paper. To me, they meter you.
Living this kind of life Where I can’t afford to eat healthy. I have diabetes! I have to, have, healthy food. But it COSTS SO MUCH these days. You put a protein here, add some fresh vegetables there, perhaps a treat for the kids. I ask my daughter, can we be vegetarian? Sometimes it’s better to eat junk Just buying, without cooking, you know. It costs too much! TOO MUCH.
Living this kind of life I can’t afford to escape This is a very expensive city. How do you survive? If you don’t have a monthly bus pass, or tickets. You don’t have anything How do you work? How do you live? How do you get paid? I don’t blame other people on ODSP or OW. If they are sitting in the house, not looking for a job. Depression makes you want to sit To forget To give up.
I want to go to summer school and take some courses. But, I can’t push myself I CAN’T AFFORD to push myself I DON’T HAVE THE ENERGY to think about it. They put you
down,
down,
down.
For living this kind of life.
For more information on livable wages, visit the following websites:
Ontario Living Wage Network who along with other provincial networks have campaigned for livable wages in public sector and non-profit employment,
Realize, an allied organization that has made HIV, episodic illness and employment a focus of their advocacy work.