Podcast Summary: The Moth - World AIDS Day: Shakirah Namwanje & Jamie Brickhouse

Release Date: November 30, 2018

In this poignant episode of The Moth, hosted by Dan Kennedy, listeners are invited to reflect on the enduring legacy of Nelson Mandela and the ongoing battle against HIV/AIDS. Dedicated to promoting equity, community service, education for all, and the fight to end HIV/AIDS, this episode features two compelling personal stories from individuals whose lives have been profoundly impacted by the disease. Partnering with RED, an organization committed to a world where no baby is born with HIV, the episode underscores the significance of community support and advocacy in combating stigma and advancing treatment.

Jamie Brickhouse: Confronting Stigma and Betrayal in Healthcare

[02:37] Jamie Brickhouse, a New York Times published author and four-time Moth Story Slam champion, shares a harrowing experience that underscores the pervasive stigma surrounding HIV/AIDS, even in affluent areas like the Upper East Side of New York City.

Initial Encounter: Jamie recounts his first appointment with a new dentist after his previous dentist discontinued his insurance:

"[02:37] ... I am at my first appointment with a new dentist. My old dentist stopped taking my insurance, so my common law husband Michael said, why don't you just go to my guy?"

As Jamie settles into the examination chair, the hygienist, referred to as Lisa, abruptly informs him of his HIV-positive status without prior disclosure or sensitivity:

"[04:10] ... she says, 'you're HIV positive.' And she says it in the way that you might ask, 'you're a convicted felon.' ... I just let the silence linger between us for a while, and then I just say simply, yes, turn the other cheek." [04:10]

Impact on Jamie and Michael: The revelation shocks Jamie, who had been HIV positive since 2002 and had lived in the closet for a decade. Initially, both he and Michael, who also fears confrontation, choose to overlook the incident. However, the breach of confidentiality resurfaces when Michael experiences a similar encounter:

"[06:20] ... Lisa says, 'I met your partner or husband. Which is it?' And he says, 'Jamie, yeah. And he tells me that he's HIV positive. Are you?'..." [06:20]

Legal and Emotional Repercussions: Jamie’s decision to address the violation leads him to file complaints with several health authorities, resulting in consequences for Lisa and the dental practice:

"[07:00] ... Lisa no longer works there. What did her do, of course, was revealing my HIV status to Michael. But the way I see it, what did her do was her fear and her prejudice and the way she treated two other people." [07:00]

Reflection and Advocacy: Jamie reflects on the importance of confronting stigma and taking legal action to protect patient confidentiality. His story emphasizes the need for greater awareness and sensitivity within the healthcare system.

Shakira Namwanje: Overcoming Trauma and Embracing Community Support

[09:06] Shakira Namwanje, a 25-year-old graduate of The Moth's Global Community Program and an activist against sexual abuse, shares her deeply personal journey of trauma, resilience, and advocacy.

Early Trauma and Counseling: Shakira begins by recounting the traumatic experience of being sexually abused by her uncle at the age of eight. Her mother sought counseling as a means to cope and rehabilitate:

"[09:06] ... I was defiled at the age of 8 years by my uncle ... My mom took me for counseling sessions as a way of dealing with my trauma ..." [09:06]

These counseling sessions provided her with a support network, enabling her to meet peers and engage with a compassionate counselor:

"[10:00] ... the counselor was very jolly and happy and very welcoming." [10:00]

The Moment of Revelation: At the age of twelve, during a counseling session, Shakira and her mother receive unexpected news about her HIV-positive status:

"[10:48] ... 'To take your medicine and take it daily is because you're HIV positive.'" [11:48]

The abrupt disclosure forces Shakira to confront not only her HIV status but also resurfaces the trauma of her past abuse:

"[11:58] ... I'm HIV positive. ... it took me a while to get over my own shame and stigma." [11:58]

Emotional Turmoil and Resistance: Overwhelmed by fear and anger, Shakira contemplates abandoning her medication and counseling, questioning the purpose of her treatment:

"[14:00] ... 'What's the point of taking medicine if I'm going to die? What's the point of going for counseling if you know it's not helping?'" [14:00]

Her counselor intervenes by involving her in group sessions, introducing her to a community of individuals facing similar struggles:

"[15:00] ... Since I'm not ready to talk to her, she's going to now put me in group sessions so I can be with other young people." [15:00]

Realization and Empowerment: Through these group interactions, Shakira gains perspective on her own challenges compared to others, fostering a sense of gratitude and igniting her passion for advocacy:

"[15:17] ... 'I realized there are people that have faced more than what I had. ... I can listen to them. I can speak and tell my story.'" [15:17]

Foundation for Advocacy: Shakira’s experiences culminate in her commitment to advocacy, utilizing music, dance, and drama to counsel and support others:

"[16:00] ... This has been like the foundation for my advocacy. ... I can listen to them. Maybe they're going to address some of those issues.'" [16:00]

Conclusion: The Power of Sharing and Community Support

Dan Kennedy concludes the episode by highlighting the importance of community support and advocacy in the fight against HIV/AIDS. He underscores RED's role in supporting the Global Fund, which is pivotal in saving lives through various initiatives:

"[16:35] ... RED is giving people more ways than ever to join the fight again against AIDS. ... RED.org." [16:35]

By sharing Jamie and Shakira’s stories, The Moth emphasizes the transformative power of storytelling in fostering understanding, combating stigma, and inspiring action within communities affected by HIV/AIDS.

Key Takeaways:

• Stigma and Discrimination: Both stories illuminate the enduring stigma faced by individuals living with HIV/AIDS, even in modern, affluent settings.

• Legal Protections: Jamie’s experience underscores the importance of legal frameworks like HIPAA and Article 27F in protecting patient confidentiality and combating discrimination.

• Community Support: Shakira’s journey highlights the critical role of community support systems in healing and empowering individuals to advocate for themselves and others.

• Advocacy and Awareness: Sharing personal narratives serves as a powerful tool in raising awareness, fostering empathy, and driving societal change towards greater acceptance and support for those affected by HIV/AIDS.

This episode of The Moth serves as a testament to the resilience of individuals battling HIV/AIDS and the pivotal role of community and advocacy in their journeys towards healing and empowerment.