Don’t you just love it when you read something that jolts you to attention; that makes you consider another perspective? I had that experience a few weeks ago when I read an article in the Hastings Center Report special issue on LGBT health, called “Repaving the road of good intentions: LGBT health and the queer bioethical lens.” The authors, Lance Wahlert and Autumn Fiester, really highlighted for me a distinction that I have somehow forgotten in the past few years; the difference between an LGBT health agenda and a queer health agenda. They reminded me that LGBT health research can unintentionally reinforce the marginalizing of some sexual minority patients and reinforce a heteronormative spin on cultural norms related to sexuality, gender identity, and the family. Their article begins with reference to a 1998 article by James Lindemann Nelson called “The silence of the bioethicists” that lamented the lack of attention to trans* health issues. He followed this in 2012 with an article called “Still quiet after all these years.” I wish I had known of this article when we were writing about nursings’ silence on LGBT issues! Wahlert and Fiester go on to suggest that the IOM report on LGBT health has an effect of reinforcing heterosexism and silencing those with the most marginalized identities. One example they use is the recommendation for electronic health records to include sexual orientation and gender identity questions. The authors’ analysis of this is:
“This seemingly innocuous recommendation…is profoundly loaded for LGBT patients, yet there is only a perfunctory nod toward the ‘hesitancy on the part of patients to disclose this information.’” The authors suggest that the recommendation is “not a serious examination of the root causes or legitimate concerns underlying LGBT persons’ reasonable and anticipated hesitancy about such disclosure. In fact, in treating this information as if it were purely (and neutrally) demographic, the IOM report naively (or obtusely) fails to recognize its complicity in reinforcing stigma. It sanctions probes for disclosure about desires, relationships, sexualities, and gender presentations of those who are non-normative and often societally disdained.”
In other words, health care providers are urged to press their patients for personal information, without corresponding education to teach health care providers about why disclosure might be dangerous for some of their patients, and without preparing them for how to respond to non-normative answers to their questions. On the part of the patient, a perception of being coerced into disclosing to a health care provider for whom they may lack knowledge of attitudes about LGBTQ issues, may lead to feelings of shame, guilt, and fear (and avoidance of health care).
Wahlert and Kriester note “you miss the stakes involved in asking such questions only if you are safely enveloped in the normative fold.” They admonish LGBT health researchers who have been at least somewhat embraced by health research disciplines as “legitmate,” to consider whether their needs for data is elevated above the potential harm to already marginalized LGBTQ patients. I’m not sure where my reflections on this piece will take me. I’ve made this plea for data collection on sexual and gender identities many times myself, and I’m a tenured professor in the “normative fold” of the academy. Have I forsaken my less fortunate LGBTQ family members in my quest for understanding health disparities? So, thank you Lance Wahlert and Autumn Fiester for the much needed wake-up call!