A Preventable Trauma: The Urgent Need to Expand Gender Diversity in Neurologic Health care

Originally published in: Neurology Blogs, Voices: Lived Experience

We are at the precipice of an emerging professional and public health care crisis within neurology.  We are at a time when the number of Americans who self-identify as transgender is  quickly increasing; as many as one in fifty members of Generation Z are transgender.¹

However, we do not have the infrastructure or training necessary to accommodate this incoming surge of gender-expansive patients into our neurologic practices.

The Human Rights Campaign annually publishes a Healthcare Equality Index, which allows for hospitals and health care systems to voluntarily participate in surveys of their transgender employee and patient care practices. In 2020, only half of participants indicated that their facility has policies aimed at “eliminating bias and insensitivity, and ensuring appropriate, welcoming interactions with transgender patients.”² Furthermore, a large, representative survey of 6,450 transgender Americans demonstrated that one in five transgender patients are refused care due to their gender identity, and half found it necessary to teach their medical providers about transgender care during appointments.³ 

This is no different in the neurologic professions. A 2019 survey of a representative, random sample of 1,000 American Academy of Neurology members showed that more than 40% of participants were unaware how gender identity may impact the management of neurologic illness.⁴ These awareness gaps are not surprising since there are no required educational or competency standards for the care of transgender neurologic patients in our profession,⁵ which is in contrast to a growing body of literature that transgender neurology is an important part of our clinical practice.⁶ If we do not immediately begin to make progressive changes to our clinical care, medical education, and research, we will remain grossly unprepared to treat a large and growing segment of our patient population.

As a transgender neurologic patient and practitioner, these statistics are personally significant to me, as my lived experience (which I now prefer to name ‘lived expertise’) is consistent with these data. The following is a common phone conversation I have had with multiple health care providers in the early stages of my gender transition:

 

Me: “I am transgender and looking to make an appointment with [provider’s name].  Does [he/she/they] accept transgender patients?”

Practice: “No, [provider’s name] does not see transgender patients.”

Me: “Does that not come off to you as discriminatory?”

Practice: <hang up> or “Wouldn’t you want to see a provider who knows how to treat transgender patients?”

 

Since this time, I have learned that I must travel far distances to see providers competent to provide my health care. Additionally, I must painstakingly vet any new providers through online forums that specifically cater to the transgender community or through recommendations from transgender community members with lived expertise as a patient under said providers. I have found many times that those who advertise themselves as practitioners serving the transgender community may have limited or no training and professional experience actually treating transgender patients. My experience with these providers were mainly harmful. This professional mistreatment ranged broadly from microaggressions to blatant harassment.  For example,

 

• Providers assumed my sex, gender, and pronouns based on my physical appearance.
• Providers were unable to adapt to my correct pronoun usage, and I was publicly mis-pronouned in waiting rooms, typically without an apology when I requested one.
• Providers invalidated or frankly questioned my lived expertise as untruthful.
• Providers asked questions irrelevant to the reason for my visit.  I believe this typically satisfied their curiosity about my sexuality or genitalia (as this was often the content of the questions).
• Providers have yelled at me during an appointment.
• Providers have called me transphobic slurs, and I experienced increased mis-pronouning when I pointed out a provider’s mistakes or requested an apology.

 

I have specific trauma from my experiences as a transgender patient within our healthcare system. I avoid seeing providers for routine and preventative care. I often require additional psychotherapy services to address my health care trauma around times I am specifically mistreated by health care professionals who took an oath designed to protect my rights as a human being. 

This trauma is not always because I am mistreated in the first place. It is more the result of health care providers’ ignorance to their own biases in a cisgender-dominated profession which has historically promoted an acceptable, systemic standard that the transgender patient needs to change their expectations, rather than the provider making the necessary adjustments to treat the patient with the humanity, dignity, professionalism and respect they deserve. As a vulnerable community member from a historically-marginalized group, I take great risk by educating or asking for an apology when a clinical provider mistreats me. And I often have no recourse through traditional structures where I can insist on holding healthcare providers accountable or receive an apology when I am grossly mistreated as a patient.

These problem statistics are not just a faceless noise in a rising sea of meaningful use and required educational modules. We are actively harming the patients we intend to serve, and some of our most vulnerable patients are afraid to even say the word “transgender” in our presence. We cannot partition our patients to treat only those parts of their identity with which we are comfortable; we must treat the whole patient and better understand their experiences within a largely unjust environment.

I encourage those in our profession to join me as allies (and accomplices) and to take action against this urgent and evolving  public health crisis facing our transgender patients. Spend time learning about the transgender community and transgender patients, and do not ask our transgender co-workers to help us with this self-work without paying for their lived expertise. We should correct our co-workers who persistently call a colleague or patient by the wrong pronouns or name.

The work of deconstructing our implicit biases should be performed on our own time. We should do this not just because it is the right thing to do, or because we care about our patients and colleagues who are transgender, or because we feel shame or social pressure to do so. We should do this because we have a professional standard and obligation to care for our patients without harming them through documentable health care trauma. And in my lived expertise, and based on many objective data cited herein, we are unwittingly and unintentionally harming our transgender patients if we do not take immediate and ongoing action in order to continuously adapt our professional culture to the demands of an ever-changing world.

 

References:

1. Jones JM. LGBT Indentification Rises to 5.6% in Latest U.S. Estimate. Gallup, Inc. February 24, 2021. Accessed August 12, 2021. https://news.gallup.com/poll/329708/lgbt-identification-rises-latest-estimate.aspx
2. Human Rights Campaign. Healthcare Equality Index 2020. Washington, DC: Human Rights Campaign Foundation.  Accessed August 26, 2021. https://www.hrc.org/resources/healthcare-equality-index
3. James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi Ma. The Report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality. 2016. Accessed August 26, 2021. https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf
4. Rosendale N, Ostendorf T, Evans DA, et al. American Academy of Neurology members’ preparedness to treat sexual and gender minorities. Neurology 2019;93(4):159-166. doi:10.1212/WNL.0000000000007829
5. Caceres BA, Streed CG, Corliss HL, et al. Assessing and Addressing Cardiovascular Health in LGBTQ Adults: A Scientific Statement From the American Heart Association. Circulation 2020;142(19):e321-e332. doi:10.1161/CIR.0000000000000914
6. Rosendale N, Wong JO, Flatt JD, Whitaker E. Sexual and Gender Minority Health in Neurology: A Scoping Review. JAMA Neurol 2021;78(6):747–754. doi:10.1001/jamaneurol.2020.5536

Outdated Binary Standards in Youth Athletics: A Need for Gender-Inclusive Policies

“What are you doing in here?”   

A middle-aged, white woman approached me fiercely in the women’s bathroom.  Her tone implied that my Y chromosomes were most unwelcome, let alone the fact that the sex on my driver’s license and my genitals were the same as hers. 

            Although she was successful in scaring me, she did not prevent me from using the bathroom aligned with my gender identity. She was at no risk of being assaulted or harassed by me, but in contrast, I was harassed while also being disrespected and publicly humiliated over a simple toilet. Why she felt the need to disturb another woman using the bathroom was beyond me, and I had no clue who deputized her with this role to police the women’s bathrooms. This trauma was jarring  enough to me as an adult of transfeminine experience, so I cannot imagine how harmful such behavior is when it is brought upon a transgender child.

            Earlier this year, 36 US states have introduced legislation to ban transgender youth from participating in sports based on their gender identity rather than their sex at birth, citing safety concerns for the cisgender students and maintaining the purity of competition (National Public Radio, 2021; Sharrow et al, 2021).  In nine states, these bills have become law (Sharrow et al, 2021).  Now, more than 1 in 10 members of the LGBTQIA2S+ community live in states with laws preventing transgender students from participating in sports consistent with their gender identity (Movement Advancement Project, 2021).

            Sex discrimination based on gender identity (including in the context of school sports participation) is federally illegal under Title IX  due to the recent USSupreme Court ruling on Bostock v Clayton County and upheld in recent Federal Policy issued by the Department of Education (Sharrow et al., 2021).   In terms of K-12 athletics, 17 states and Washington, D.C.  have gender-inclusive policies allowing transgender students to participate in school sports without requirements of medical or legal transition (Sharrow  et al., 2021; @THECHRISMOSIER, 2021; Goldberg et al, 2021).  Other states either offer no guidance, have invasive policies placing the student under medical or administrative scrutiny, or limit participation solely on the basis of the institutions’ individual definition of “biological sex” rather than scientific evidence and individual identity (@THECHRISMOSIER, 2021; Goldberg et al, 2021).  National surveys demonstrate that transgender youth are discouraged from playing sports based on their gender identity, and more than half have been prevented from using bathrooms and locker rooms based on their identified gender (Kosciw et al. 2019; Goldberg et al., 2021).

            This is in the face of increasing amounts of data demonstrating that gender-exclusive policies worsen mental health outcomes for transgender youth (Goldberg et al, 2021).   Transgender youth who experience discriminatory athletic policies report lower self-esteem and school belonging, as well as higher rates of depression and school absenteeism (Clark et al, 2021; Goldberg et al, 2021).  Other data show that transgender high school students feel less safe using sex-segregated facilities, which may explain lower levels of sports participation in this student population (Kulick et al. 2018).  On the other hand, gender-inclusive policies lower the reported risk of self-harm, depressive symptoms, and unsafety at school for transgender students (Goldberg et al, 2021). 

            Furthermore, there is no data that signifies any safety risk for transgender students.  Politicians involved in this legislation are unable to name a single transgender athlete, let alone name an example of a safety issue or violation of athletic policies perpetrated by transgender women (Crary et al, 2021). 

            In fact, leading experts in pediatrics and genetics suggest that gender-exclusive policies diminish the diversity of athletes’ bodies (National Public Radio, 2021).  Dr. Eric Vilain explains: “every sport requires different talents and anatomies for success. So I think we should focus on celebrating this diversity, rather than focusing on relative notions of fairness. For example, the body of a marathon runner is extremely different from the body of a shot put champion, and a transwoman athlete may have some advantage on the basketball field because of her height, but would be at a disadvantage in gymnastics. So it’s complicated” (National Public Radio, 2021).  Gender varies by culture and often differentiates diversity into discrete, but subjectively-created, categories.  Therefore, we may need to rethink how gender is viewed in athletics, and focus the debate on the realities of sex and gender, and not lose the facts for outdated traditions and standards which discriminate against many student athletes who identify as transgender.

            Historically women who look different have been targeted for discrimination, whether cis or transgender.  For those who are transgender, there are additional layers of intersecting identities which further prevent transfeminine student athletes from receiving equal treatment in school athletics.  Transmisogyny, defined as oppression at the intersection of femininity and transgender identity (Serano, 2007), is displayed in the imbalanced NCAA policies regarding gender-affirming hormone therapy in transmasculine versus transfeminine athletes.  As Dr. Vilain describes, testosterone is the main discriminator in these policies, as it effects muscles and red blood cells and therefore speed, strength, and endurance (National Public Radio, 2021).   Many transgender children choose to go on medications that delay puberty while they make decisions on whether to medically transition.  In the absence of a male puberty, all children should roughly be at similar advantage in sports (National Public Radio, 2021).  But this biology and scientific evidence  is not reflected in many US state’s policies regarding student athletes.

            Therefore, we need to review our own implicit biases regarding sex and gender, as the gender binary has made it difficult for any woman– cis or transgender– to be accepted in competitive athletics if they do not conform to strict societal standards of what it means to be a woman.  Implicit bias testing can be taken online at https://implicit.harvard.edu/implicit/takeatest.html.  Diversity is natural to biology, and there is great variation between members of the same sex, which can give some cisgender women advantages over others in some sports and disadvantages in other sports.  Some cisgender men and women have high levels of testosterone and others have low levels of testosterone, yet they are not excluded from play in athletics.  The same thinking should be applied to transgender women in sports, who present with a diverse range of sizes, strength and athletic abilities. 

            The existence of nonbinary gender identities and intersex conditions demonstrate that dividing sports into binary gender categories is too limited a worldview  (De La Cretaz, 2021).  The solution would be to either open up categories to include genders outside of man and woman or to find a different means to categorize athletes separate from chromosomes, hormones, and genitals, which in no way define an athlete or their skills.  If critics of gender-inclusive athletic policies cite the relatively larger musculoskeletal size of transgender women (which is not true of all transgender women), then would not body measurement be a better distinguisher between categories than gender?  I think it is time we reconsider how we view gender in our world, because our world is already changing whether we want it to or not.  And fear of change is not an adequate reason to discriminate against a marginalized community.

            I am lucky to be in a profession that is accepting of gender variety, and I therefore have the privilege to learn contemporary social welfare policy from diverse faculty who are accepting of my authentic gender expression, such as Dr. Neisha Wiley.  I find within social work education, my pronouns “they/them/their” are often viewed as an asset rather than a liability to the classroom experience.  It is no coincidence that social work is the profession with the largest code of ethical responsibility (National Association of Social Workers, 2021).  The dignity and worth of the person and challenging social injustices are engrained as core ethical responsibilities of social workers.  I believe it is time social workers continue to become more involved in schools to ensure that gender inclusive policies are created and enforced.  To do otherwise would be contrary to our professional ethics.

Resources from Warner Library

Warner Library LGBTQIA2S+ Resources

Here you will find a list of recently published books from the collection at Warner Library library, specifically selected for LGBTQIA2S+ community members. These books are intended to showcase the diversity of the human experience as it relates to gender identity/expression and sexuality/sexual orientation, and highlight the way LGBTQIA2S+ identities interact with other identities we hold to shape the way we experience our world.

We have also included a list of online resources that young people and their families may find useful.

This is a sampling of available resources and not an exhaustive list. If you would like help finding more, please contact your librarian at Warner Library in Tarrytown, NY.