I’m reading through papers, books and reports related to queerness, the environment, and occasionally other topics. As I read, I’m taking notes so I can refer back to my old readings and remember their key points more easily. Why not post my notes here, so you can all learn with me?

The bulk of each article will be a summary of the reading, and will then end with my thoughts. Square brackets throughout the summary indicate comments from me.

Bauer, G., R., Hammond, R., Travers, R., Kaay, M., Hohenadel, K., M., & Boyce, M. (2009). “I Don’t Think This Is Theoretical; This Is Our Lives”: How Erasure Impacts Health Care for Transgender People. Journal of the Association of Nurses in AIDS care, 20(5), 348-361. https://doi.org/10.1016/j.jana.2009.07.004

Introduction

• “Despite consistency of results, little attention has been focused on understanding how and why trans people come to experience marginalization in such pervasive ways.”

Background and Significance

• Health is a holistic state influenced by social and political factors. Trans people face a number of challenges.
  • Challenges accessing relevant healthcare services.
  • Lack of access to social services.
  • Trouble accessing relevant harm reduction and HIV prevention work.
  • Often face discrimination and harassment day to day.
• Trans people encounter barriers to maintaining a stable income.
  • Disproportionately high rates of violence, harassment, and discrimination in workplaces, schools, and child welfare systems.
  • There are few jurisdictions where rights for trans people exist, and even fewer where they’re enforced.
  • Where there are other dimensions of oppression, those people have it worse.
• Trans people have a larger risk of HIV.
  • 27.7% of transwomen have HIV.
  • HIV risk and low self-esteem are correlated.
  • Increased suicide risk due to marginality.
• Absence of explanations for trans marginalisation.
  • Tendency to focus on transphobia and transphobic acts, rather than systemic reasons. Focusing on explaining experiences of marginalisation has prevented the development of underlying mechanisms that drive that marginalisation.

Methods

The Trans PULSE Project

• “Trans PULSE is an Ontario-wide project that aims to broadly understand how social exclusion impacts the health of trans people.”
  • “…an active partnership between community members, service providers, and academic researchers who share a desire to undertake community-based research that will help to alleviate the systemic inequities facing trans people in Ontario.”
  • Phase I consisted of focus groups, to find out what trans people are concerned about in relation to health and healthcare.
  • Phase II, which is currently being undertaken, involves a survey and uses a respondent-driven sampling method.
  • Phase III “will seek qualitative input to provide depth of understanding to key survey results.”
  • This report draws on Phase I data.
• Data Collection
  • Held seven community meetings in the summer of 2006.
    • 89 people were involved; 85 trans people and four allies. 
    • Six meetings were trans-only spaces, with one group for allies and family members.
    • Demographic data was collected before the meetings.
• Data Analysis
  • It was important to ensure the trans community felt they had ownership of the research processes and outcomes. Researchers paid attention to capacity building.
    • [This rules.]
  • Mind maps for key themes were prepared.
  • Discussions were held about the meanings and key themes from the data, which is where the Results section of the paper was conceptualised.
  • Direct quotes from trans people are included as supporting data in the results, to give priority to our voices and lived experiences.

Results

• Thematic analysis uncovered the following concerns about health, which were based on lived experiences of transphobia:
  • Income instability.
  • Barriers to accessing trans-inclusive health care services.
  • Lack of relevant and accessible information.
  • Systemic social service barriers.
  • Self-esteem and mental health issues.
  • Challenges to finding help.
  • Relationship and sexual health concerns.
• Difficult experiences in the system:
  • Interacting with physicians, nurses, staff and metal health providers.
  • Finding accurate information.
  • Accessing primary, hospital, mental health, and transition-related care.
• While this article focuses on healthcare concerns, “the experience of social exclusion and the processes of erasure described also apply broadly in other contexts.”
• Erasure appeared in two key domains; information and institutional policies and practices
• Erasure could be passive or active.
  • Passive erasure “included a lack of knowledge of trans issues and the assumption that this information was neither important nor relevant”
  • Active erasure “could involve a range of responses from visible discomfort to refusal of services to violent responses that aimed to intimidate or harm”
  • “Active and passive erasure within these two domains produced systemic barriers to care and served to reinforce the erasure of individual trans people and, by extension, trans communities.”
• Informational erasure “encompasses both a lack of knowledge regarding trans people and trans issues and the assumption that such knowledge does not exist even when it may.”
  • Manifests in studies, curricula, textbooks, and in information available to health care professionals and policy makers.
  • Health research
    • Usually does not allow for the identification of trans people. It assumes participants and their partners are cis and their gender is static. This erases trans experience and subjectivity.
    • Lack of info rmationimpacts on “issues related to family practice, mental health, and trans-specific health care, which includes transition-related as well as primary health care concerns.”
    • “I think that one of the things that bothers me personally is the lack of information on long-term worries healthwise.”
    • “I’d like to ask my doctor ‘‘Well, what should I worry about?’’ and not hear ‘‘Well, I have no frickin’ idea.’’”
    • Information for health professionals primarily comes from the DSM, where we’re classified as a disorder.
    • Health providers may perceive unrelated mental health issues as stemming from gender identity. The reverse can also be true; a belief that gender identity is as a result of mental illness. Providers often see trans status presented alongside mental health issues, not helping with conflation.
      • “This blurring or blinding of issues may result in inadequate or inappropriate care.”
    • Past research which has included trans people may be stigmatising or alienating.
    • Where information exists, it is often not incorporated “into textbooks, educational curricula, health care protocols, or other summary documents”. Where it is included, it may be conflated with sexual orientation.
    • There is no way of knowing whether trans patients who have been dismissed move to another clinic or stop accessing healthcare altogether. “This may create an impression of population scarcity and contribute to a perception of limited need.”
    • Trans people have to educate their own doctors.
    • Lack of a good estimate of the trans population.
      • “…one publically funded community health centre in Toronto, which is mandated to provide primary health care services to LGBT communities, currently has more trans clients than should exist in the entire province, given these estimates.”
    • “Given oft-cited estimates from the Netherlands of 1 in 30,400 born females and 1 in 11,900 born males being transsexual”
      • [Rates in 2023 are 0.3% trans women, 0.4% trans men, 0.3% non-binary/gender queer, 0.3% intersex, which is much higher.]
    • “In my opinion, until we blow that myth out of the water, we’re only going to get funding that’s based on a 1 in 30,000 of the population. If we are, as some would believe, 1 in 1,500 to 2,000, then we should get 15 times the attention and funding.”
    • “…the cumulative invisibility of trans people has meant that the overall prevalence of trans people has continued to be grossly underestimated.”
      • This is because the data is based on the number of trans people seeking surgery, which is a small portion of the population.
    • “Health care professionals need to have a sensitivity that there are so many different kinds of trans people, and to have an assumption about a person because they identify as trans.”
• Institutional erasure “occurs through a lack of policies that accommodate trans identities or trans bodies, including the lack of knowledge that such policies are even necessary.”
  • Exclusion from the outset in texts and forms, particularly referral forms.
  • Example given of a transman unable to get a gynecologist appointment because his health card reads “male”.
  • Erasure can be embedded in systems.
    • Issues with sex designations on documents.
      • Staff may assume it’s an error and try to get it corrected.
      • May out a patient as trans.
    • Billing systems may link certain procedures to particular genders. E.g., hysterectomy or prostrate exam.
  • “In sex-segregated systems such as hospital wards or women’s clinics, trans people are often forced to choose between accessing services according to their birth sex or foregoing services entirely.”
    • [Sounds like people trying to access shelters after a disaster.]
  • “…many providers are not familiar with or willing to accept the possibility of trans identities, which impacts both the availability and quality of care.”
  • Many people have to travel to find welcoming or even tolerant healthcare environments.
  • “The lack of information, along with the failure to synthesize existing information into curricula and texts, contributes to the impression of research scarcity and, by extension, minimizes the importance of trans-related research.”
    • Continuing to underestimate the size of trans populations leads people to think trans research is not important. This then lends itself to continuing to ignore trans issues and not adapt existing systems, due to a belief it’s not relevant to many people, and there being no funding in it.

Discussion

• Cisnormativity “describes the expectation that all people are cissexual, that those assigned male at birth always grow up to be men and those assigned female at birth always grow up to be women.”
  • It is so pervasive, it is not named nor noticed. These assumptions are so prevalent, they are difficult to recognise at first.
  • It shapes:
    • Child rearing
    • Policies and practices of individual people and organisations
    • The way in which people are counted
    • The way in which healthcare is organised
  • “Cisnormativity disallows the possibility of trans existence or trans visibility.”
    • This means that when a trans person does show up, it produces a social emergency as both staff and systems are unprepared.
  • It’s important to use “cissexual” when talking about cis people to ensure trans people are not erased. By inserting “cissexual”, the alternative “transsexual” is never far from mind.
• Navigating Cisnormative Systems
  • Difficulty finding providers who can provide trans-competent care.
    • Providing a trans-friendly environment.
    • Having specific knowledge of trans issues.
  • Trans patients need to educate their doctors.
  • Need to endure being put into sex-segregated wards or being sent to sex-specific service clinics that are misaligned with their gender.
  • Negative experiences, or fear of them, leads to avoidance or inadequate self-treatment.
  • Dilemma around how and when to disclose, for those who can pass as cis.
    • “Yet choice is often an illusion in which all options carry risks. For example, a trans person in need of emergency health care has the ‘‘choice’’ to self-disclose his or her medical history and hormone use. Disclosure involves the risk of denial of care or mistreatment; lack of disclosure involves the risk of inappropriate health care and possible unintentional disclosure through medical examinations or testing.”
  • “The onus should not be on trans people to make themselves visible in vulnerable situations, to educate persons in positions of greater power, or to try to change policies to accommodate their needs, especially at a time of need or distress.”

Recommendations to Counter Erasure

• Informational Contexts
  • Identification of trans participants in all research
  • Awareness of and attention to cisnormative assumptions in research questions
  • Prioritization of research on trans-specific needs
  • Assurance that research represents diversity of trans communities and addresses needs of specific segments of the community
  • Involvement of trans people in identifying research priorities
  • Assurance that research questions and approaches are nonpathologizing and community-sensitive
  • Incorporation of trans health issues into textbooks
  • Incorporation of trans health concerns into medical, nursing, medical assistant, social work, and psychology curricula
  • Provision of training on creating a trans-friendly clinical environment
  • Provision of continuing education credits for trans health-related workshops
• Institutional contexts
  • Development of intake forms that allow for trans patients or clients to self-identify
  • Assumption by providers that any patient may be trans
  • Assurance that all providers and staff use pronouns and names appropriate for a patient’s gender identity, asking the patient if in doubt
  • Indication of trans-friendly environments through posters or other visible signals
  • Development of protocols for testing or treatment that are not sex-specific or that do not assume all members of a sex are cissexual
  • Assurance that there is a comfortable place for trans patients within sex-segregated systems such as hospital wards or elimination of sex segregation where possible 
  • Development of resources for referral to trans-friendly providers, where needed 
  • Assurance that billing systems are set up to accommodate scheduling and billing ‘‘women’s’’ services to men, and ‘‘men’s’’ services to women 
  • Removal of sex designations from identifying documentation unless necessary
• Resources
  • Principles of transgender medicine and surgery (2007)
  • Guidelines for Transgender Care (2006)
  • Transgender emergence: Therapeutic guidelines for working with gender-variant people and their families (2004)
  • Gender Loving Care (1999)

Implications for HIV Prevention, Treatment, and Care

• Targeted HIV prevention and care programs have been developed as researchers have come to understand gay men. This has not happened for trans people as little to no research has been carried out.
• Unless a program is targeted at trans people, it typically assumes all bodies are cis.
• Erasure of trans bodies reflects what is considered normal or real, which can affect self-esteem.
• Trans people using black market hormones or sharing needles for hormone injection may be unaware of transmission risks; their doctors may also be unaware.
• Dual stigma of being trans and having HIV may lead some to not disclose their trans or HIV status when seeking treatment. This will result in decreased quality of, or inappropriate, care.
• Surgeons who are unfamiliar with trans issues may refuse to perform surgery on HIV-affected trans patients for gender affirming surgery. 
• HIV-related antiviral medications present another set of issues.
  • Unlikely to have been tested on trans people, meaning adverse reactions and other harms are not understood.
  • May lead to adverse interactions between HIV medication and hormones.

Conclusion

• “Whereas this article has focused on issues in health care, the processes of erasure outlined herein have application to other areas in which trans individuals interface with institutions or systems around issues such as housing, employment, and social services.”

 My thoughts

“Focusing on explaining experiences of marginalisation has prevented the development of underlying mechanisms that drive that marginalisation.” This is a great point, and it’s an issue you see in the way society tackles bigotry across a range of marginalised groups. We ask people of colour, women, queer people, disabled people, neurotypical people and more to change their behaviour, or to figure out what they could be doing differently. Really, we should be getting the white, male, straight, cis, able-bodied, allistic and people with other “default” characteristics to change and be more inclusive. In the context of this article, it’s the straight and cis medical establishment that needs to change its practices to ensure queer people receive the care we’re entitled to.

This is the first paper I’ve read where I can say I adored the methods section. Immediately talking about capacity building in the community was a win; it means this research, unlike so much else, wasn’t just extractive. It gave back to the community it was studying. Demystifying the research process is so important; it allows communities to engage, to know what is and isn’t appropriate, and means they can shape more research in the future. Hopefully, it will encourage some people to actively pursue more research, if they now realise it’s approachable.

“Direct quotes from trans people are included as supporting data in the results, to give priority to our voices and lived experiences.” I love that a paper about erasure is leading by doing. It’s making sure to centre trans voices, making sure we’re not erased throughout the paper.

Passive erasure is something I’ve been coming across when talking with friends about queer issues in the context of the climate crisis. I know a lot of people who work in climate or sustainability more broadly, and basically no one has thought about the impact of climate on queer communities. And they’re not sure how it would be relevant, or that there are bodies of research around environmental racism or the impact of environmental degradation on women. This line of thinking has inspired me to do a series on the impacts of climate on various marginalised groups. I’ll probably start with the poor, as that underpins so much of the others.

Active erasure is the sort of thing that happens at shelters after a natural disaster. I summarised another paper on this topic here.

“…reinforce the erasure of individual trans people and, by extension, trans communities.” This is so important to remember. Any one act of erasure sucks, but many disparate acts of erasure add up to large parts of the community being erased.

Informational and institutional erasure are good concepts. Combating informational erasure is the reason I’ve been reading all these papers. I want to see what’s out there and identify gaps, as well as just… learn about what we already know so I can talk to it.

The quote from the patient concerned about long-term health information resonated. This is so frustrating. Some specific areas are well-studied, but general queer health info can be hard to come by due to systemic exclusion.

The point that one clinic in Ontario had more trans patients than there should have been in the whole province illustrated a huge data gap. How could they get it so wrong?

I recently finished Invisible Women, which was a great book about how women are excluded from policies, governments, and all kinds of arenas. I kept thinking of the book as I read through this paper, as it has a lot of the same themes. The book lacked any discussion of genderqueer people, but a lot of the concepts can be applied to us, which I’ll be doing in a piece I’m working on.