Tag: LGBTQ

Code Switching: Gravel Against Stone

Andrew C. is a queer East Asian medical student who writes about altering his voice and pronunciation to perform what he calls “the most stereotypically masculine version of myself.” He describes having learned to do so as a child of immigrants, growing up in a suburban Georgia suburb and wanting to fit in. In the essay, he analyzes why he continues to feel the need to do so in medical school. He says he has yet to meet someone like him who is a physician, and so code-switching is required if he is to enact the implicit model of “competent physician” that is on offer to him. He writes: “I am still carrying the heavy weight of my childhood notion that to be different is to be singled out as ‘other’—and I fear that it may impact the outcome of my medical education. These vocal habits are a form of self-preservation. But when I reflect on my childhood, and my lack of exposure to queer-physician role models, I fear that I will be perpetuating the problem.”

The essay is an eloquent example of why it is so important for health care providers to come from a range of identities and social positions. It also speaks to the challenges for those providers who come from under-represented groups and why equity and inclusion require not only that we diversify, but also that we welcome and value the diversity that people bring.

The essay is brief enough to be read together in a class or workshop. It is one of several essays from a writing contest by Pulse, an online site that publishes personal narratives about health care.

Accessible Narrative Medicine digital library

The Accessible Narrative Medicine digital library includes outlines for narrative medicine workshops, as well as “third objects” (poems, short essays, stories, images, items that can be the catalyst for conversation, reflection, and writing).

The goal of the site is to encourage the practice of narrative medicine in a wide range of community settings by making available detailed workshop outlines and resources that can be adapted by community workshop facilitators for their particular audience and setting. The developers of the site believe that “narrative medicine workshops should be led by trusted members of a community. In order to create an inclusive safe space, the content and leadership of a workshop should reflect the lived experience of those attending.” The outlines and materials focus on the health narratives of BIPOC, LGBTQ+, and persons living with disability.

Registration is required to access the materials; once registered, site users can find workshops on core narrative medicine ideals, including attention, witness, and re-presentation. The library of third objects is searchable by topic and genre and includes not only written works but also images and art. The site has secured permission for use of narratives and many of the third objects include a bio for the author/artist, as well as a downloadable PDF of the object.

Embodied Futures: Reimagining Aging in Conversation with Older People

8 page graphic narrative structured around a conversation between a Japanese American college student and her grandmother. Each page is a collage of images, text and drawings, allowing for both discussion of the issues (aging, intergenerational relationships, queer identities) and the techniques and

Access Intimacy, Interdependence and Disability Justice

Text of Mia Mingus presenting at the 2017 Paul K. Longmore Lecture on Disability Studies at San Francisco State University, with a link to the video, posted to YouTube. Mingus is a queer physically disabled Korean transracial and transnational adoptee, who is a writer and educator of disability justice. The lecture focuses on disability scholarship with personal stories woven throughout used as persuasive appeal. She stresses that disabled people, including disabled queer individuals of color, are often overlooked in social justice movements and communities, and emphasizes the importance of including their experiences and stories. The main focus of this talk is the idea of “access intimacy,” which is a term she coined that refers to a deep, often unspoken connection between individuals who understand and accommodate each other’s access needs, in the context of disability. It’s the feeling of comfort and understanding when someone “gets” your access needs, making it easier for disabled people to navigate their daily lives. Access intimacy can exist with other disabled people, family members, or complete strangers, and can be as small as a knowing look and intangible as a feeling of familiarity. Nevertheless, Mingus describes how access intimacy is a powerful tool for liberation and a way to reframe the understanding of disability. Mingus argues that access should be used to challenge ableism and able-bodied supremacy and encourages shifting the responsibility for access from individual to collective responsibility.

This talk could be used to bring up discussions about disability and ableism, disability justice, interdependence, cultural competence and intersectionality, and patient-centered care.

States of Grace

The film States of Grace intimately captures the profound transformation of a revered physician and her family in the wake of a life-changing accident. Dr. Grace Dammann, a pioneering AIDS specialist and devout Buddhist who was honored by the Dalai Lama, was driving across the Golden Gate Bridge on her routine commute when another driver crashed head on into her car. After seven weeks in a coma and a dozen surgeries, Grace miraculously awoke with her cognitive abilities intact, though her body was left shattered. States of Grace follows her return home to where her partner Nancy “Fu” Schroeder becomes Grace’s primary caregiver, while also caring for their teenage daughter Sabrina, who was born with cerebral palsy. Grace, meanwhile, must reconcile her joy at still being alive with the frustration of being so dependent on others. Through verité footage and interviews with doctors, family, and friends, the film paints an inspiring portrait of devotion and trust as it delicately documents one woman’s fight to reinvent herself.

Through Grace and Fu’s story, this film explores many aspects of health studies, including the shift from provider to patient, role redefinition when a family member becomes a primary caregiver, the role that spirituality can play in healing, parenthood, and more.

Living with HIV: Six Very Different Stories

This article from The Guardian features six diverse narratives of individuals living with HIV, highlighting the evolution of the HIV/AIDS experience over the past 30 years in Britain. For example, Jonathan, diagnosed during the early epidemic in the 1980s, reflects on living with HIV for over half of his life, explaining how he managed without medication until 1996 and has come to embrace life with HIV through activism. Another example is Jo, diagnosed at 60, who discusses how she navigated the shock of her diagnosis and the perceptions associated with being an older woman with HIV. She’s open about her diagnosis because she wants to change perceptions about people living with HIV.

This article offers students an opportunity to reflect on diverse experiences with the same illness, and brings up topics such as stigma, activism, and media representation of illness and how these change through time.

Living with Alzheimer’s Disease: Barry’s story

“Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life.”

This story is pulled from Biogen, a Massachusetts-based biotech company, in their efforts to shed light on individual patient stories. This link takes you to the Biogen website, where you will find both the video interview and transcript. Biogen is not mentioned in this story but could be an interesting discussion point for a class focused on capitalist healthcare in the US. This story illustrates the importance of personal agency and control in a patient’s journey with Alzheimer’s disease and could be helpful in a class focused on narrative healthcare and patient autonomy. Discussions could include medical advertisements, medical autonomy at different stages of life, stereotypic images of who is an Alzheimer patient or caregiver, and privileges that come with having medical autonomy. The video is also interesting as a multi-layered text (for example, if one viewed only the video, it isn’t at all apparent that this is a story about illness, a feature that can prompt discussion about how this contributes to a message about early diagnosis and patient autonomy).

Josh’s Own Story – Living with HIV

This health narrative comes from a personal Blog entitled I’m Still Josh. Josh Recounts his journey from testing negative for HIV in November 2011 to being diagnosed with HIV-1 in January 2012. Despite the initial shock and fear, he remained resilient and committed to raising awareness about HIV, challenging laws in Tennessee and stereotypes associated with HIV. Josh highlights that HIV is not a punishment and that individuals living with HIV are not “dirty.” The author discusses the importance of informing sexual partners due to legal obligations but expresses a positive attitude, asserting their undetectable status and the ability to maintain a fulfilling life, including engaging in sexual relationships.

In a health narratives class, this story could be utilized to explore the emotional and social aspects of living with HIV. It provides insight into the personal challenges, societal stigmas, and legal implications associated with HIV. The narrative encourages discussions on the intersection of health, law, and personal identity, as well as the importance of destigmatizing HIV and promoting awareness. Josh’s narrative could serve as a platform for discussions on public health policies, the impact of legal frameworks on individuals with HIV, and the role of storytelling in health advocacy.

Living With HIV for 15 Years: What I Have Learned, Loved, and Loathed

This narrative traces Henry’s journey as a person living with HIV, offering a profound exploration of the emotional, physical, and social dimensions of his experience. Henry shares his experience of discovering his sexual identity and the eventual acceptance of being queer. Henry was diagnosed with HIV in 2006 and his story touches upon the challenges faced during the seroconversion period, reluctance to start antiretroviral therapy, and his subsequent health struggles. Henry also reflects fifteen years post-diagnosis on the dual nature of HIV as both a gift and a curse, acknowledging its impact on their perspective and relationships. He encourages others to be proactive in their care, emphasizing the advancements in HIV competency in the medical, political, and social spheres. The story concludes with a powerful message of self-compassion, urging individuals living with HIV to be good to themselves and recognizing that HIV is a condition, not a death sentence.

In a health narratives class, this story could be used to delve into the multifaceted aspects of living with HIV, from the initial shock of diagnosis to the ongoing management of the condition. It offers insights into the importance of community support, mental health services, and proactive healthcare in navigating life with a chronic illness. Additionally, the narrative could serve as a platform for discussions on stigma, disclosure, and the evolving landscape of HIV in healthcare and society.

What I’ve learned after living with HIV in secret for years

ABC News producer Tony Morrison shares his personal journey living with HIV in a powerful essay on the eighth anniversary of his diagnosis. He discusses the emotional challenges, societal stigma, and the impact on his dating life. Morrison emphasizes the importance of disclosure and understanding in relationships, and he challenges HIV-related stereotypes. His essay explores the impact of societal attitudes and stigmatization on mental health and the significance of self-acceptance and living openly. Morrison concludes with a message of resilience, choosing to celebrate life and an open dialogue surrounding HIV.

This narrative can stimulate discussions on topics like HIV education, destigmatization, and the importance of empathy and support for individuals living with stigmatized chronic illnesses. Teachers and students can use the essay to foster understanding, promote open dialogue, and encourage others to critically examine societal attitudes towards HIV and AIDs.