Mikeya Keyabee is a young queer woman born with with HIV who is nearing college graduation with a degree in sociology. Her goal is to combine sociology with activism through work that focuses on stories about people living with HIV and to produce work that addresses media representation of AIDS issues, most especially as they impact youth. Her observation is that within the dominant mainstream culture, when these issues are talked about, they have been filtered through a near exclusive focus on health issues. In her workshops, Keyabee’s goal is to expand the frame to include personal stories of struggle that allow for a closer look at the complexity of negotiating identity for those living with HIV and as a means to identify and counter stigma, most especially for youth living with HIV. Keyabee’s work follows from her own reflections about having learned as a 7-year old that she was a child living with HIV and then navigating her way into young adulthood with the challenge of how to balance that part of her identity with all the other parts of her identity. The question that provided the seeds for her workshop: How to come into a fully empowered sense of self when the representational field of people living with HIV is so limited?
Keyabee began launching into the workshop by honoring those who have survived violence and acknowledging the need to create a safe space for dialogue. Her opening exercise asked participants to reflect on their own subject positions in relationship to struggle: How many of us know someone who is living with HIV/AIDS? How many of us are living with HIV? How many of us have experienced violence? How many of us have experienced feelings of exclusion or shame?
Keyabee then shared a spoken word poem she wrote specifically for this workshop. In this piece about being born with HIV and surviving childhood violence, she imagied the complexities charging her parents’ relationship that resulted in her birth. Keyabee’s poem provided a meditation about trauma and the challenge of “to love or forgive,” referring to herself as “the child pheonix.” She positioned her own personal story as a tool to help further frame our reading of the opening workshop exercise. How does a young child learn to cope with struggle? What would it mean for a young child living with HIV to see no positive images in the mainstream media of anyone who looked like herself and no stories about children living with HIV? What would it mean to grow up in the 1980s and see most images of those infected with HIV associated with the ravages of disease and socially stigmatized behaviors, such as drug use and promiscuity? How can a young person love and embrace something within herself that seems to cause so much death and disease in the world?
Keyabee had participants to make a list of media representations of people living with HIV and AIDS. Our collectively brainstormed list included: images of suffering children from third-world countries; gay men wasting away from a disease blamed on a promiscuous lifestyle; exclusive associations of the disease with white-male homosexuality; images of HIV as a disease contracted by those who are less civilized. (A gay male student of mine shared that growing up in the 1980s, such images caused him to believe at the age of 9 that because he was gay he had HIV even though he’d never had a sexual relationship with anyone.) When it comes to representations of treatment, our group recalled images that make it appear one’s life must completely revolve around medicine. The problem with dwelling on what causes the disease is that it avoids focus on how HIV currently impacts the public culture on multiple levels.
Keyabee discussed the impact of such representations, such as feeling that those living with HIV can never be in a romantic relationship, development of a fear of intimacy, and distrust in engaging in sexual relationships. In thinking about other forms of social impact, we spoke of how up until recently, there was the need for bloodtests to enter other countries. In 2008, the US used to bar people with HIV from entering the country, and this law was only changed 4 years ago. There are activist foundations that have had a huge impact in public health campaigns and policy making, but the mindset of many of these organizations is not prepared to serve different populations and communities. Our group talked about the gap between the intention and the impact of the storylines in media campaigns.
Our observation was that the public discourse tends to dwell more on those lost than those living with HIV. There are exceptions, such as Magic Johnson and his success with antiviral therapy. But for the most part, as a culture we hear very little about people living with HIV. We also discussed the perception that HIV is a problem of the past and not something that today effects people on a daily basis. There are people who ignorantly believe HIV/AIDS has been cured and is gone. (In 2009, the Act Against AIDS National Campaign reminded Americans of the then current statistics: “Every nine and a half minutes someone’s brother, mother, sister, father or neighbor is infected with HIV.”)
In addition to representational violence, Kayabee was also shaped by her childhood experiences of physical and emotional violence. When Keyabee’s mother was pregnant, the doctors did not want her to have the child because during that moment in time AIDS was seen as a death sentence. Her father had not disclosed to her mother that he was HIV positive and the disease was passed forward to the children. Until age five, Kayabee experienced a household defined by her father’s physical abuse. Then, at age 5, her brother passed away. She remembers sitting in the backseat of the car after being piekced up from school when her mother noticed her brother not breathing; he was taken to the fire station where Keyabee watched the EMT try to revive him. By age 7, when Kayabee found out she was living with HIV, she already had several traumatic experiences.
Keyabee credits the development of her core strength and expressive powers with Seattle’s Rise and Shine, an organization whose mission is to provide emotional support programs, stability, advocacy, and AIDS education for children and teens affected by HIV/AIDS. They facilitated her ability to express her emotions and learn to speak about her experiences. Kayabee credits them with saving her life and directing her to be the person she is today. She spoke at length about being in their youth summer camp with other children aged 5-18. She remembers coming to the camp as a needed release when her brother passed away when she did not yet know she was living with HIV. Upon returning home, she asked herself why she’d been sent to a camp where all of the kids were talking about their relationship to HIV? Her mother had not yet told her daughter she’d been born with HIV because she’d wanted to protect Kayabee from the stigma associated with HIV.
Kayabee’s personal sharing illustrates the point of her workshop: the importance of youth being give a way to communicate about HIV/AIDS. She wants to bring a human element to reaching out to young people living with HIV/AIDS and to give back to the sense of community fostered by such groups as Rise and Shine. Through her spoken word poetry and workshops, Kayabee’s already seen a positive impact with people reaching out to her through Facebook. She offered the example of being contacted by a girl who contracted HIV through rape with peers who learned of the event stigmitazing her for having AIDS. Kayabee wants to create a space for understanding how our responses to HIV impact identity formation.
Kayabee recalled that when she found out, she did not fully understand what it meant to have HIV/AIDS. It wasn’t until high school that she understood the impact but also the stigma; ie. in health classes she saw images of those with HIV taking lots of pills and looking close to death. This prompted her to raise questions about what would happen to her. She felt deeply impacted by her fear of violence in telling people about her experience and status; and there was the the challenge of making other intersections. She had no access to anyone to talk to within the education system. Her only support was Rise and Shine.
Because during her childhood and adolescence Keyabee did not see many positive role models of others growing up with HIV, a looming question for her was when to tell friends and partners. She’s learned to analyze structures in which it is safe to trust others with sharing information. In our discussion, a workshop participant commented: “I would want someone to tell me right away if there was the potential of romance involved. Otherwise, I’m not sure if it matters.”
One of the materials Kayabee provides to workshop participants is a handout that includes examples of stigmatizing terms and preferred terms. For example, “AIDS Virus” is listed as a problematic term with the explanation that “AIDS is a syndrome not a virus; HIV is the virus that causes AIDS. The preferred term is HIV (Human Immunodeficiency Virus).” A participant expressed much appreciation for the handout. It make us think of all the things that well intended people have done that are hurtful. She wondered if as a person who is not positive she has ever said things that have been hurtful and/or ignorant as a result of social conditioning.
Keyabee was asked if she had stories to share about encounters. She responded, “Education is difficult.” She follows the life of Magic Johnson; rap videos, images from the 1980s, and contemporary work to reinvent images. As far as the issue of being an ally, she would like to see people explain how a community sees things but also interject the notion of privilege. She sees watching documentaries and the conversations that result from them as a powerful starting place. An audience particpant expressed thanks to Keyabee for how her workshop helps us come together to talk about fear and stigma.
Keyabee hopes her spoken word poetry and performances provide a way to tell her story without having a direct conversation. They show a different way to speak about the experience of living with HIV. Kayabee says that there is always an academic or health discourse that puts things in one ear and out the other. She wants to broaden the discourse to educate people through a human story that offers more positive representations about and by those living with HIV, most especially young people. One of her favorite bloggers is Brandon because of the ways he talks about his life, his recovery, and navigating between different struggles. She says, “I relate to him because of the ways he must also deal with society and intersectional identity and how he uses art as a tool. Her goal is to see more diverse stories in theater and hip hop about the experience of living with HIV.
Interestingly, I attended this workshop during a week in which I was preparing to teach Tony Kusher’s Angels in America and the Pomo Afro Homos’ Dark Fruit, a play that begins with a performed critique of Kushner’s character Belize; the impact of HIV/AIDS for Belize, and by extension other people of color, is figured only in response to white gay men. Clearly, white male subjectivity does not represent all people, most especially when it comes to the complexities of living with HIV and the ways doing so is clearly dramatically impacted by class, race, and gender. Kayabee’s workshop made me think about what it would mean for her to grow up with Kushner’s play as a celebrated work of American theater and how this play would read to her? Kaybee’s workshop brought a new lens to my thinking about the play as well as many other issues. For example, in that week’s discussion with my college students, one student offered that he felt Kushner’s play was “archaic” and that “People aren’t as politically conservative today and AIDS is not such a crisis issue.” Kayabee’s workshop made me ask: “How many of you feel that if you were diagnosed with HIV, the campus health center could take care of your treatment?” No one raised a hand. I then asked, “How many of you feel that you could be completely open about living with HIV and not fear or experience any discrimination?” Again, no one raised a hand.
Kayabee’s workshop was an incredibly powerful experience that I highly suggest educators and others consider brining to their school, university, business or other organization.
Mikeya Harper (Kaya Bee) is a youth mentor, spoken word artist, hip hop emcee, teacher and workshop facilitator. She can be contacted at: keyabee.com and firstname.lastname@example.org.