I recently saw the legendary drag performer, Miss Coco Peru (Clinton Leupp), do a wonderful homage to Disney’s now-classic musical animated film, “The Little Mermaid,” in her superb stage act. She poignantly and comically draws many parallels between her own life and the life of the fairy tale’s heroine, Ariel, the mermaid who “sells” her beautiful singing voice to the evil sea witch, Ursula, in exchange for getting legs to visit the sea surface, meet, and marry her land-lubber prince. Her identification with Ariel made me think of another analogy: How many people living with HIV “sell” their voice to get the things we need? Sadly, after over 20 years of the epidemic, issues of stigma keep too many people living with HIV/AIDS silent in order to maintain their jobs, their homes, their friendships, and their family relations. In my work with consumers and providers of HIV social services, the issue of disclosure arouses more intensity of discussion than perhaps any other.
Who are the “sea witches” in our lives who silence our voice? There is the rejecting dating partner, who looks at us as diseased pariahs rather than three-dimensional people who have something to offer in a relationship. There is the ignorant co-worker, still fearing casual transmission after 20 years of clear data that educates the public on how HIV is transmitted. There is the disapproving parent, who rejects the idea of their youth or adult child being sexually active, or ill, when their primary role is to nurture and protect their offspring. There is the cold, corporate insurance company, rejecting us for the sale of health or life insurance policies because we are “high risk.” There is the indifferent President, who makes some vaguely supportive political speeches but doesn’t follow through with sound domestic policy and funding for HIV care. There is the dangerous local sociopath, who could harm us by vandalism or assault if he knew of our HIV status because of acting out his own fear and violent tendencies. All of these figures (and we’ve all probably met them) contribute to inhibiting us and arousing just enough fear in us to keep us from fully thriving in life, from singing with our full voice.
In “The Little Mermaid,” Ariel ultimately defeats Ursula and regains her voice. How do we do this in real life? We start by recognizing that we have worth that goes beyond our identity as people living with HIV. As Los Angeles therapist and columnist, Bethany Marshall, LMFT, has said, “Our self-esteem does not rise and fall on the smiles and frowns of others,”; we are whole and wonderful human beings in every setting, wherever we go, whether we are in the company of supportive people or not. We also regain our voice by recognizing that some people can relate and be supportive, and some cannot. This means that we need to make conscious choices on whom we date, where we work, whom we choose as our “inner circle” or family/surrogate family, whom we do business with, and whom we vote for in elections. We speak up and speak out, wherever and whenever we can, to personally testify from our own experience about what we need to thrive and why it’s important that everyone (living with HIV or not) work together to address the epidemic individually, locally, nationally, and globally. By making these choices and carefully aligning ourselves with supportive others, we consciously structure our lives and populate them with people compatible with us, and leave the rest aside.
One of the most effective movements in HIV/AIDS advocacy over the past 20 years has been ACT-UP, whose civil disobedience and high-profile activism, particularly in the 80’s and early 90’s, led to the development and approval of the medications that keep us alive today, as well as the medical programs and social programs that were developed in response to the epidemic. As state governments deal with shortages in AIDS Drug Assistance Programs, and as Congress heads toward re-authorization of the Ryan White CARE Act in 2005, it is more important than ever that we regain our voice, on a personal and collective level. ACT-UP’s classic slogan, “Silence Equals Death”, still applies today. Find your voice again, Ariel. Sing. Better yet…Roar