Our Queer Bodies

Navigating youth through clinical research.

My friend Justine and I were walking through the streets of Cambridge one cold winter day, chatting about summer plans, coffee preferences, and — as is common among life-long Massachusetts residents — pipe dreams of moving to California. Having grown up with Justin, I was still cautious about using her birth name: in my interactions with transfeminine friends, I often stumble in the first few months of the transition to honor their preferred pronouns and chosen names. In the process of reviewing the changes in our life, Justine was proud to note her twenty-fourth birthday. I inquired further, as most of my twenty-something peers tend to blur the demarcations between twenty-one and thirty. “Well, I’m out living my life expectancy,” was her curt reply.

As a kid growing up in Boston, I always thought my future lay in biomedical research. Boston is a city of scientists, and its youth have access to incredible resources unimaginable in other parts of the country. In high school, my doctorate-educated teachers cultivated a love for biology and scientific inquiry; I was able to experience the joy of research first-hand, through field trips to world-class research institutes down the road and an internship at a local biotechnology company. Biomedical research is the intellectual inflection of my local identity.

For many queer young people, however, the future is much less certain. Though the data on average life expectancy for transgender women is limited, Justine’s comments made clear to me the lived reality of dangers that she encounters on a daily basis, including sexual violence, transphobia, and increased risk of depression and suicide. While I cannot claim to understand the complexity of Justine’s experiences navigating this world, I have always felt that queer people have a different relationship to the body based on my own experiences as a gay man. With such disparate life outcomes in terms of mental and physical health, the tether that keeps our spirits anchored to our queer bodies seems more precarious — frayed, perhaps — by the continual weathering of stigma, social alienation, and sexual difference.

Since graduating college, I have probed this experience of queer youth by working with the Youth Community Advisory Board (YCAB) at Fenway Health, the nation’s largest LGBT health center. We are a self-organized group of activists, clinicians, community members, and researchers that provides feedback to clinical trials and research projects at The Fenway Institute, the research center associated with Fenway Health. As Chair of the YCAB, I have learned that for LBGT folks, aspects of scientific research are often motivated by a desire for liberation: from the gendered body, from social stigma attached to desire, and the toxicity of structural homophobia and racism. Bringing together researchers and community members, we incorporate social justice and youth work into clinical research. Rather than mere hypothesis testing, our studies attempt to enact structural change through the lens of both scientific literature and youth development.

Life After Liberal Arts

As an undergraduate at Harvard, I had always considered my youth to be a disadvantage in my approach to laboratory science at a premier academic research university. When speaking with more senior scientists, I would often defer to their expectations or evaluations under the assumption that my own opinions on the matter were always already eclipsed by years of experience. I associate this orientation to research with an aspect of melancholy: an aversion to exhibit the boldness of my youthful imagination, uninhibited in my mind by established pedagogy and risk-adverse professionalism.

Even within this academic model of research, I managed to design what I would qualify as a queer experience of life sciences. Following high school, I matriculated at Harvard College and pursued a multidisciplinary plan of study at the nation’s oldest biology department. While pursuing a secondary major in the Study of Women, Gender and Sexuality, I had the opportunity to work exclusively with female primary investigators, including the only woman of color on the faculty. This simultaneity of exploring molecular biology alongside issues of race, gender and sexuality has informed my approach to problems of biology, health, and academic inquiry.

From my experiences in lab, I learned that most academic training follows a model of tiered apprenticeship similar to the heteronormative family model. Under this model the scientific innovations of young scientists are exchanged for material and institutional resources from more established scientists. In queer communities, relationships between members of different generations operate differently than the heteronormative family. The intergenerational exchange — whether homosocial or homosexual in nature — constitutes a unique aspect of community formation for gender and sexual minorities and exists outside of biological determinacy. As an analogous formation to heteropatriachal inheritance, the LGBT family rests upon the transmission of lived experiences and history from elders to youth.

Yet from my experience working with researchers at Fenway, I have come to see how the promiscuity of this intergenerational exchange constitutes queer community formulation at this moment in our liberation: as youth provide feedback to scholars working to demonstrate the LGBT experience to the scientific mainstream, they remain at a distance from the experiences of young people who have witnessed the most dramatic expansion of tolerance and acceptance of our community in modern history. The complexity of this experience manifests itself in the current status of HIV/AIDS in the US. In 2010, the CDC reported a 22% increase in the HIV infection rate among young gay and bisexual men. More senior researchers and advocates who once worried about the extinction of the gay community in the 1980s and 1990s now struggle to understand the modern experiences of LGBT youth.

In spaces such as the Youth Community Advisory Board, these researchers come not only to share their vision of HIV risk intervention but to also listen to the voices of youth who seek the skills necessary to take ownership of their own healthcare. Johannes Wilson, a coordinator of the Youth Community Advisory Board at Fenway, describes the unique potential of “giving youth the power to define their own realities and what matters most to them, and equipping them with the tools to take action on the issues they identify as important to their health.” By establishing a dialogue between clinical researcher at The Fenway Institute and youth members of the YCAB, Wilson envisions a platform in which young people “can create both a process and an outcome that is empowering and therapeutic.” In this sense, the intergenerational exchange travels both ways, and as Chair of the YCAB, I have witnessed the value with which the larger institution of Fenway Health approaches the experience of youth in the community.


LGBT Health and Community-Based Participatory Research

Originally conceived of as a philosophical critique of positivism by German theorist Kurt Lewin in the 1940s, community-based participatory research (CBPR) found fertile ground in the intellectual fallout of World War II. Positivism stresses the notion that reality may be totally understood from empirical validation of rational schema, and leading intellectuals of the 19th and early 20th centuries applied this scientific thought to social structures. CBPR arose as a moral response to correct this scientific certainty of the early twentieth century, in which the prevailing sentiment of researchers and technologists contributed to such horrors as the atomic bomb, the Holocaust, and eugenics.

Drawing upon the works of postcolonial intellectuals such as Paulo Freire, anthropologists and social physiologists developed early models for CBPR in the 1970s. In this stage, researchers conceived of reality as a culturally situated phenomenon, and moved from a positivist framework that considered community members as objects of study to one that embraced them as collaborators in academic inquiry. In response to the challenges of globalization, CBPR became inflected with strains of liberation theology, Marxism, and anti-apartheid sentiment. These elements have helped to transform CBPR beyond a merely academic pursuit to a plan of action that concomitantly cultivates community empowerment and understanding in regards to social problems.

The experience of HIV/AIDS in the 1980s and the growing awareness of health disparities particular to the LGBT community have helped to translate the application of CBPR from social sciences to the clinic. In response to the advocacy of groups such as AIDS Coalition to Unleash Power (ACT UP), the NIH began institutionalizing methods for CBPR in clinical trails in the 1990s to correct the perceived indifference of researchers and clinicians to the specific health problems of minority populations.
In 2003, psychologist Ilan Meyer first theorized the minority stress model in relation to mental health disparities in sexual minority populations. In this model, the self-perception of minority status as devalued or stigmatized contributes to negative health outcomes through the sedimentation of stress and high-risk coping behaviors. To explore this critical element of LGBT health, researchers solicit quantitative and qualitative feedback from community members to adequately understand how stigma becomes internalized in the queer experience.

LGBT health represents a particularly rich field for application of CBPR. Medical and scientific communities continue to approach the experiences of gender and sexual minorities as pathology, which in turn contributes to minority stress and negative health outcomes. Public health scholar Meredith Minkler describes modern forms of CBPR as “not a method but an orientation to research” that strive to overcome the historical injustices of intolerance through “mutual respect and colearning between partners, individual and community capacity building, systems change, and balancing research and action.” In our biannual retreats to new members, the YCAB reviews this intellectual history in the context of LBGT liberation in the hopes that its new members will view academic inquiry as an invitation to action.

In distinguishing the approach of my colleagues in the YCAB from other models of CBPR, I resort to the feminist theory of intersectionality. First originated by Kimberly Crenshaw in relation to the unique social experiences of black women in the Reagan era, instersectionality describes the synergistic oppression of marginal identities given the histories of racial and gendered inequality in the United States. Intersectional analysis represents a primary lens of the YCAB’s approach to disparate health outcomes affecting LGBT youth. Given the diversity of our generation and the varied experiences of our membership, we constantly question how race, gender, sexuality, generation, economic status, and other forms of situated identity contribute to the social determinants of health in our community.

To erode the social harms inflected by multiple marginalized identities, legal scholar Dean Spade moves intersectionality from its origins in racial theory to a framework for social justice programs with the concept of intersectional resistance. In his 2013 piece “Intersectional Resistance and Law Reform” Spade elucidates the radical demands of social justice movements as he “describes a way of thinking about subjection that rejects both the declaration of a universal experience of a given vector of harm and the notion that people affected by multiple vectors are enduring conditions that are simply experiences of single-axis harm added together.” In considering how activists deploy Crenshaw’s notion of intersectionality, Spade offers the examples of several social justice projects that target complex social problems through a multidisciplinary approach to reducing disparities inflected by race, gender, sexuality and/or other forms of marginalized identity.

The works of Spade and other queer scholars resonate with the community development programs of the youth researchers in the YCAB. According to YCAB coordinator Wilson, “as a community exhibits more and more oppressed identities, the number of health disparities that community faces will increase. To really eliminate health disparities… we need to grapple with the social and political realities experienced by these communities and listen to their voices in order to create holistic and multidimensional health interventions… since they are the real experts on their own issues and the conditions of their lives.”

Youth in Action

In 2012, researchers at The Fenway Institute formed The Youth Community Advisory Board at Fenway Health as a means to engage queer youth in the clinical research process, promote youth development among community members, and work towards long-term visions of structural change in response to specific health problems facing young people who identify as gender and sexual minorities in Boston. Researchers at The Fenway Institute identified a need for culturally sensitive recruitment methods for several studies involving LGBT youth, and in response the younger staff members such as Wilson organized the advisory board as an opportunity to encourage youth to take part in their healthcare system. I was elected as the first community representative on the leadership board of the YCAB in 2014, and have since worked with the founding staff members to promote a vision of community-based healthcare and scientific research that empowers queer youth to take ownership of their health.

The YCAB project emerged with the financial and substantive support of the Adolescent Medicine Trials Network for HIV/AIDS Intervention (ATN), a national collaborative network of clinical trials facilitated by the National Institute of Child Health and Human Development (NICHD). ATN aims to promote the reduction of HIV incidence in youth ages 12 to 14 by promoting “protocols on promising behavioral, microbicidal, prophylactic, therapeutic, and vaccine modalities” for HIV infected and at-risk populations.

In a research capacity, the ATN has provided the YCAB the opportunity to respond to several studies involving Pre-Exposure Prophylaxis (PrEP) for HIV in clinical trials specific to adolescent populations. These studies included a randomized, placebo-controlled double-blinded study examining the impact of a large monthly dose of Vitamin D on bone density for young people who are on a Tenofovir-based regimen. In response to concerns raised by YCAB members in conversations that arose out of this collaboration, researchers at Boston Children’s Hospital, Brown University, and The Fenway Institute revised educational materials provided to patients to include culturally sensitive language for transgender youth participating in their study.

In a community development capacity, the YCAB evolved as a youth outlet for Connect 2 Protect® (C2P) Boston, a CBPR organization developed by the ATN to rally community support for preventing the spread of HIV/AIDS among young adults. Through extensive community participation and a commitment to structural change, C2P Boston has identified risk factors for HIV at the individual, community, and structural level in the Boston area. Guided by evidence-based practices for HIV risk reduction, and in partnership with other community organizations, C2P Boston members successfully advocated for a change to the Wellness Policy in the Boston Public School system to provide free condoms to high school students and comprehensive sexual health education that is LGBT-inclusive.

In a biomedical context, I believe that many of my colleagues espouse an intersectional approach to reducing health disparities among LGBT youth with the recognition that clinical interventions remain limited in their effectiveness in producing structural change. The YCAB embraces a multidisciplinary approach to clinical research that engages clinicians in community action and invests in youth as resources in efforts to liberate the community from the health burdens of minority stress. As a youth-organized and directed organization, we recognize that the modern face of the HIV/AIDS epidemic has become increasingly younger, poorer, and browner. We work with particular attention to the unique needs of LGBT youth of color in helping them to take ownership of their healthcare through awareness and community engagement.

To put intersectional analysis into practice in tackling health disparities impacting young LGBT people, the YCAB has worked in partnership with various organizations in the Boston community that target the multiple vectors of harm that hinder youth from accessing care and medical education. By advising a study pertaining to positive mental health outcomes in LGBT youth of color at The Fenway Institute, the YCAB acknowledges the power in aligning the study — titled “Our Health Matters” — with the #blacklivesmatter campaign in providing youth the tools to practice mindfulness bases stress reduction while identifying structural racism and transphobia in the healthcare system. From his work as a lead youth researcher on the project, Wilson stresses, “LGBTQ youth, especially LGBTQ youth of color, are marginalized for so many aspects of their identities… Youth are tired of always being simply the objects of research, of always being administered to and patronized, rather than treated as active agents in their own health and the health of their communities.”

According to the Williams Institute of UCLA, approximately 40% of homeless youth identify as LGBT, and we aim to promote wellness in our community by recognizing the interconnectedness of multiple marginalized identities that exist within the clinic, including sexuality, economic status, race, and gender. Through our work with the ATN and C2P Boston, YCAB members have identified LGBT youth homelessness and housing insecurity as confounding factors in efforts to link young HIV positive patients to primary care in the view of the patient center medical home. This fall, we are supporting the Massachusetts Housing and Shelter Alliance as it implements a youth development program targeted at teaching youth with experiences of homelessness or housing insecurity narrative and leadership skills with the ultimate aim of delivering their stories at the Unaccompanied Homeless Youth Awareness Lobby Day. LDP participants will be making recommendations about how to best utilize resources and policies to support unaccompanied homeless young adults. In this way, the YCAB looks at the clinic as only one point of intervention in the network of structural vectors of harm that contribute to disparate health outcomes impacting gender and sexual minority youth.

In working to further institutionalize the YCAB at Fenway, I find the most valuable intersectional aspect of the project in youth development. Recognizing the power of this multidisciplinary collection of youth, researchers and clinicians at Fenway never hesitate to connect YCAB members to preprofessional and academic resources available through the health clinic. This generational focus proves invaluable to Wilson’s vision of social change: “the process of youth leadership in research, intervention, and social transformation is itself of benefit to the people engaging in this work, and it also leads to social transformation or innovations in practice that are more grounded in the perspectives and realities of the communities they are intended for, making them more effective.” With this unique model of intergenerational exchange at a moment when the closet continues to recede further into the background of public consciousness, the queer community at Fenway works to promote wellness and combat health disparities facing LGBT folks by investing in youth and in turn gaining valuable feedback on their scientific and community endeavors.

Sunset of Youth

When I speak to YCAB members about their motivations for working to eliminate health disparities in our community, I hear stories that oscillate between youthful ambition, frustration with the status quo, and tragedy over the loss of loved ones. This sense of melancholy within my own youth was punctuated periodically by the tragic loss of friends and colleagues throughout my early 20s. Among my circles of gay male friends, a string of sudden losses involving methamphetamine and alcohol overdose became at moments too frequent to process or acknowledge.

In my freshman year of college, a gender studies professor introduced me to the work of performance artists Tim Miller, one of the infamous NEA Four, whom she celebrated for his bravery in portraying the experiences of queer boyhood through such works as “My Queer Body.” Five years later, as I continue to wonder why I could make it to the age of 25 while other members of my community could not, I am only now beginning to understand how the effects of stigma shape our queer bodies. As a queer man and a scientist who has benefited from the privileges of race, gender, and economic status, I turned to the Youth Community Advisory Board at Fenway Health to help researchers identify what exactly promotes this precarity in queer youth. At the precipice of my own youth, I have learned of the curative power of community, and am continually humbled that such a life-enabling opportunity has played an important part in my nascent adulthood.

In June of 2015, days after the announcement of the Supreme Court decision that ensured marriage equality nationwide, the YCAB hosted an open forum on reactions to the historic moment in LGBT liberation. As lifelong residents of Massachusetts, many of our members expressed ambiguity over a legal formality that has been available in our society for the majority of our lives. In looking towards the future of our liberation, members traced broad and nebulous visions of a world in which the symbols M/F have no place on legal documents, in which youth of color can grow up, and where boarders do not delineate the freedom to expression. They were radical, diffusive, transient thoughts, not quite unlike the pink cirrus clouds I observed strewn across the tangerine skyline on my walk to the train later that night.


Daniel Selgrade is the current Chair of the Youth Community Advisory Board at Fenway Health. He graduated from Harvard College in 2012 with an AB in Molecular Biology and Secondary in the Studies of Women, Gender and Sexuality. Twitter: @dselgrade