Radical Self-Advocacy

Written by
Olivia Williams

Jan 17, 2019

Jan 17, 2019 • by Olivia Williams

Brendan McHugh is pursuing his doctoral degree in the American Studies Department at the University of Minnesota. His dissertation will use oral histories and field interviews to highlight the previously seldom discussed stories of people active in HIV/AIDS service organizations and other activist groups. To this end, he is writing a historical study of the Shanti Project, one of the oldest AIDS service organizations in the U.S. that provides emotional and practical peer support services. His other projects include work on the history of women living with HIV/AIDS, needle exchange programs, and issues of disability and aging in relation to HIV.

He tells me that “centering histories of larger events should be rooted in people's narratives and lived experiences.”  His own experiences as a queer disabled activist trying to navigate the perils of life as a graduate student ultimately lead to a realization about the importance of self-advocacy for marginalized people living with disabilities or chronic illness. 

As a graduate student Brendan’s health insurance is tied to his enrollment and teaching load.  This health insurance, vitally important because of his disabilities and bipolar disorder, ironically would not be available if he were forced to take a leave of absence because of health issues.  He draws a parallel to the fact that many of the queer scholars writing about HIV/AIDS are uninsured or have very limited health insurance benefits because of their jobs in academia.

Even when health care is available, it may not always be accessible.  “Queer people and people of color know that even if you have access to health care it may not be the best most beneficial thing.”  He recounts a story gathered during field work from a woman diagnosed with AIDS in the 1980s.  Upon learning that she needed to be tested, she made an appointment with a prominent queer doctor who had dedicated his practice to treating HIV/AIDS.  The doctor agreed to perform the test but told her it was ridiculous to test her since only gay men contracted the disease.  She insisted on testing anyway only to find out she was indeed positive.

Brendan tells me that he has been forced to learn how to advocate for himself in obtaining his own health care whether through researching medication alternatives or taking steps to carve out routine and stability from the chaos of graduate school.  Universities provide graduate students health care coverage knowing it has major gaps and that the university itself will be a major cause of stress for these students.  As graduate students are inundated with the mandate to publish or perish, and constantly reminded of the competitiveness of the academic job market their mental health often suffers.  With few institutional resources in place to address these concerns, self-advocacy is often the best and only option.

It was through the process of interviewing long term survivors of HIV/AIDS that he encountered “queer elders” who not only helped teach him the importance of self-advocacy but put his own struggles into perspective.

Although he acknowledges that life as a graduate student is a far cry from the lives of early HIV/AIDS patients, facing the rigors of intense courses of study, dissertation defense, and the uncertainties of a super-saturated job market for tenure track positions his work has taught him the value of quality health care for those living with disability and chronic conditions, as well as the constant struggle to advocate for yourself.

For more of Brendan’s work on the intersection of disability history, the history of medicine, and gender and sexuality studies visit http://disabilityintersections.com/author/brendanmchugh/ and https://apps.cla.umn.edu/directory/profiles/mchug103.  You can follow him on Twitter at https://twitter.com/brendanexplain1.