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Lines image, Because She Cares

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  • Writer's pictureLori C.

"I'm not one of your success stories": Re-thinking success storytelling in HIV service work

Updated: Jun 1, 2022

At the agency where I work They kept on saying “You are one of OUR FEW SUCCESS STORIES.” Oh Yea! Oh yea! And I had to sit everybody down and say, “Excuse me? We need to correct some language here. I was never a FAILURE."


Some of my colleagues have promoted the HIV service work experiences of people living with HIV as “success stories”. They believe their employment exemplifies the Ontario HIV sector’s commitments to the principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA). While I recognize their honourable intentions, we should be critical of success storytelling of HIV service employment, particularly if these storytelling practices become more about AIDS service organizations or the HIV sector rather than about the individuals themselves.

Success storytelling can become a normalized practice of what people living with HIV SHOULD DO: share their personal experiences to raise HIV awareness or to empower themselves and others. The performance aspect of documenting and sharing personal stories of working with HIV can be an educative and conscious-raising practice; yet, this practice may essentialize one’s HIV status, where one’s seropositivity and lived experience as a person living with HIV becomes THE expertise they bring to HIV service work, minimizing their other skills, including educational backgrounds, and prior activist and service work experiences. Many of the Narrators I interviewed had substantial work experience that they brought to their HIV service work, yet, their identity as people living with HIV or as “peers” too often subsumed the other expertise and insights they could contribute.

In the employment era of “diversity, equity and inclusion,” success storytelling can become a tokenistic practice where organizations promote the employment of people living with HIV to demonstrate their inclusiveness and GIPA/MEPA bonafides. For African, Caribbean and Black women, this tokenistic practice intersects with their other minoritized identities as racialized immigrant women living with HIV working in the predominantly white, male workspaces. In this milieu, success storytelling can promote an exceptionality discourse of “overcoming” intersecting adversities. Yet, this “overcoming” storytelling is framed by stereotypes of people living with HIV (existing on the social margins), racialized immigrants (unsuccessful vocationally), and women of African descent (living in poverty). Thus, success storytelling of African, Caribbean and Black women employees living with HIV can promote deficit ideologies and intersecting gendered, racialized, and ableist stereotypes.

Kecia M. Thomas (2013) speaks of tokenistic employment of Black women in higher education, which resonates with some issues I observed in the hiring and employment practices of mainstream AIDS service organizations. Black women employed in organizations where they are underrepresented are often accorded a “pet” status (Thomas, 2013). Because of their minoritized identity, organizations parade them as representing employment equity in practice. Yet, such promotion of Black women exotifies them for their minoritized identities and positions them as exceptions, rather than seeing them and treating them as equals. This treatment is also a performative equity practice that adds to rather than addresses institutional and systemic barriers to equitable employment.

The tensions of success storytelling in HIV service employment does not mean we should not tell the work stories of African, Caribbean and Black women living with HIV. Far from it. But we need to question why we continue to story tell the successes of GIPA/MEPA in employment policies if employees living with HIV are the exception rather than the rule. African, Caribbean and Black women living with HIV remain underrepresented in many mainstream AIDS service and allied organizations or employed in the most precarious, underpaid, low-level positions. Considering their underrepresentation and underemployment, we need to reflect on these employment failures.

AIDS service organizations also have to stop appropriating the work stories of people living with HIV to promote organizational achievements. Many African, Caribbean, and Black women living with HIV with whom I have worked are successful DESPITE the systemic barriers they have faced. Instead, address the organization and institutional failures that create inequitable workplaces, including implementing anti-Black racism in its training and policies.

In the poetic re-telling, “I’m not one of your success stories,” Nadira* offers a scathing critique of the operationalization of GIPA/MEPA principles within HIV service employment. She is especially critical of her organization's promotion of her employment as a “success story” without considering how such positioning could be disempowering and tokenistic. She believes this narrow construction of employment of people living with HIV as a “success” ignored the broader context of employment while living with HIV, such as the personal challenges and structural barriers people with HIV may face when striving to re-enter the workforce.



At the agency where I work

They kept on saying


Oh Yea! Oh yea!

And I had to sit everybody down and say,

“Excuse me?

We need to correct some language here.

I was never a FAILURE.

“I was dealing with a lot when you met me.

Living with HIV, living in a new place, as a refugee, with children back home

Social housing, social assistance, school, work, poverty

I hit ROCK BOTTOM because of my situation.

But it wasn’t a FAILURE.

I was NEVER a failure.

“I had to deal with a lot of stuff.

A lot of stuff happened AT ONE TIME

My brain couldn’t handle it.

That’s where I was.

It had NOTHING to do with me FAILING.

“Failing is …

I was supposed to do this

But I couldn’t do it

Because of my OWN CHOICES.


I didn’t choose to be anxious, stressed, overworked, impoverished, depressed!

So, don’t call me a failure.

NEVER call me a FAILURE.”

And they were like, “No, we don’t mean that you were a failure.

When we say you are a success, we are just saying


And I looked at them and said,

“Excuse me?

We need to correct some language here.

That is NOT how you say SOMEBODY OVERCAME.


What was there TO OVERCOME?


It's dealing. It’s surviving. It’s coping. It’s living.

How do you OVERCOME living?

“I have worked so hard to build my self-confidence

To get to this point, I repeat to myself,

‘I can do this. I can do this. I can do this.’

Every time.

‘I CAN do this! I CAN do this! I CAN do this!’

“And then you turn around and say

‘Here she is. One of OUR SUCCESS STORIES.’

All the SELF-CONFIDENCE that I built up

Went SH-H-H-O-O down the drain.

“If you see me as YOUR SUCCESS

You are telling me,

‘You can’t do this. You can’t do this. You can’t do this.’

Yes you are. You are saying,

‘You CAN’T do this! You CAN’T do this! You CAN’T do this!’

Or I couldn’t have done it

Without YOU.

“You know what?

I am no longer your client.

I am your co-worker.


I have earned my right to be here.

“When you call me YOUR SUCCESS STORY

You are telling me I am not your equal

And you are telling everyone I was YOUR CLIENT.

“I shouldn’t have to fight for YOUR RECOGNITION.

I shouldn’t have to demand YOUR RESPECT

“So please, stop calling me YOUR SUCCESS STORY.

It's NOT for YOU to SAY THAT.”

*Pseudonyms are used to maintain the confidentiality of the Narrators.

For more reflective critiques of the application of GIPA/MEPA principles in the engagement of women living with HIV, I suggest that you read the following articles:

Breaking the Glass Ceiling: Increasing the Meaningful Involvement of Women Living With HIV/AIDS (MIWA) in the Design and Delivery of HIV/AIDS Services: This article offers some thoughtful recommendations on addressing the tokenistic involvement and underemployment of women living with HIV.

To get an intersectional understanding of deficit ideologies in the employment of Black women, I suggest you read the work of Kecia M. Thomas, including her book chapter, Women of color at midcareer: Going from pet to threat. Her theorization of tokenistic employment of Black women in mainstream organizations (i.e., “pets to threats”) resonates with some of our findings in Because She Cares.


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