Nothing About Us Without Us
The following is adapted from a 10-minute presentation I gave for a webinar organized by the Adventist Bioethics Consortium in collaboration with the Adventist Health Policy Association (AHPA). The web gathering was on ethical care for transgender people within Adventist Healthcare Institutions. Recently, AHPA adopted ten principles they recommend such institutions assume. In my portion of the webinar, I partially reply to the document explaining the ten principles (read it here).
Note that this conversation is contextualized specifically to Seventh-day Adventist-associated healthcare organizations, not the wider healthcare world. Because the Adventist Church holds a narrow and condemnatory view of transgender people and their transitions, this conversation is significant for healthcare providers within the church.
The video of the webinar will be found on their website shortly. Thanks for reading - and please add your contributions in the comments section.
As I read the AHPA document outlining principles for the treatment of transgender persons, I found myself feeling resonance and hope. Thank you to those who contributed to putting it together. Today, I want to make three observations about my needs and wishes for medical care. I will do this from my identity as a transgender person, a white woman, a Christian, a spouse, a pastor, and a parent. I’ll share my observations through three vignettes from my own life experience.
I can’t speak for all trans people. My voice is my own, and at the same time, I do think it reflects some of the flavors of the overall conversation. Another caveat, not all healthcare for trans people is gender-affirming. As integrated humans, we have many needs and challenges, and conditions outside of our gender that need to be treated. Our trans identities aren’t always relevant to the care at hand.
1 - I need and want my providers to be informed.
From my vantage point, this observation is addressed in part by the AHPA document, under items 2, 3, 4, 5, & 8.
Years ago, I had a provider who I told I wanted to talk about my gender identity. I explained that I was afraid I might be experiencing Gender Dysphoria. It was a terrifying experience. I had thought about this for a long time, and it took a lot of courage for me to show up and verbalize it. I was well aware of the injustices that trans people face. I didn’t want to be one. I didn’t want it to be true.
Therefore, when the provider explained to me that gender dysphoria was a made-up concept, that it was not regarded as mainstream, and that so-called transgender people are deluded at best. It wasn’t more than a few sentences. Still, the provider made it clear that transition and transition-related interventions are not considered best practice even if a person was experiencing what might be explained as gender dysphoria. This conversation was somewhere in the 2010s. For reference, the WPATH (World Professional Association for Transgender Health) guidelines version seven was published in 2012.
Although I was relieved at this feedback from my healthcare professional, it also represented a missed diagnosis. My provider’s ignorance and/or bias led them to make this mistake. The consequences for me were significant. My care was delayed by years. During this time, I went through a great deal of suffering, including suicidal ideation. For other trans people, there are many other possible consequences for medical providers’ ignorance, prejudice, absence of curiosity, or lack of empathy. Many of us know the WPATH guidelines for care (a new version has just been approved). When we encounter professionals who do not practice at this standard, it lowers our trust in them, frustrates us, and even feels like oppression or marginalization.
2 - I need and want my providers to respect me.
This observation is addressed in part by the AHPA document under items 1, 6, & 9.
It’s hard being a trans person in this world…even in America, even in California (which are among the safest environments for us on the planet). Merely existing as a transgender person, we face daily ridicule and disgust, overt and covert discrimination, near-constant misunderstanding, false accusations, and religious condemnation. The list goes on and on. Because it’s so hard, many, if not most of us, are very careful about the spaces we expose ourselves to regularly. This is profoundly true for me. In my city, I know the coffee shops, restaurants, stores, churches, and even neighborhoods where I feel comfortable and safe.
But when it comes to medical care, we don’t really have a choice where we go or who we get (and that’s if we get access to care at all!). Medical environments can be even scarier when we’re going in for care or preventative screenings that are specifically related to our birth sex anatomy. Unfortunately, sometimes, accessing care means getting bullied by medical staff whose desire to make a point outweighs their willingness to show basic human respect. I don’t know about other trans people, but the environment within which I’ve been most consistently misgendered (“Mister,” “Sir,” “He/Him,” “Kris,” “Dad”) has been the healthcare setting.
“Transgender people are brave, tough, intelligent, unique, and beautiful. I believe we reflect the image of the divine and that our transitions are holy. ”
Recently I was at a vaccination clinic in a temporary medical office set up in a shopping mall. While waiting for my shot, I stepped out of the area to find a restroom. As I walked by, ostensibly the lead nurse, I heard a sharp voice repeatedly calling to me. “CAN I HELP YOU, SIR?” “DO YOU NEED SOMETHING, SIR?” I was wearing a dress, makeup, earrings, and cute little ballerina shoes — you get the picture. I let her know I was headed to the restroom.
Her jabs felt deliberate. They hurt. It felt unsafe. After returning in line, I chewed on what to do in response. For my dignity, I decided to go back and gently confront her.
“Can you help me understand,” I said, “what it is about my presentation that led you to think that ‘SIR’ would be the most appropriate way of addressing me?”
The older woman spluttered and fumed, obviously uncomfortable. Her comment had apparently been deliberate. Eventually, she unleashed a flurry of embarrassed apologies saying, “I don’t know, I’m just old school, and I just don’t know why I said that, and I just, I’m just — well, I’m sorry.” I was grateful to hear it, and pleased to allow her to make a change.
Transgender people are brave, tough, intelligent, unique, and beautiful. I believe we reflect the image of the divine and that our transitions are holy. We deserve respect and dignity. We deserve to feel safe in every context, and especially medical ones.
3 - I need and want my providers to delight with me in my transition.
This is addressed in part by the AHPA document under items 7, & 10.
Because of the challenges associated with accessing care in the first place (which is perhaps the most critical issue facing trans people when it comes to medical care in general), it feels like a big deal once we’re able to get it. Sometimes care is delayed by transphobia. Other times it is denied due to gatekeeping, underemployment related to discrimination, inadequate willing providers or medical systems, long wait lists, etc. Regardless, it feels exciting or like a huge relief when we finally find ourselves in the endocrinologist’s clinic or prepping in the surgery ward. For some of us, it can feel like a rite of passage.
Here’s the thing, transition doesn’t have to be somber, serious, or morose. It doesn’t have to be hush-hush and awkward. Those are relics of a past that cloaked us with shame. Our transitions, medical care, and transition-related medical care can be joyous. Moments where our lives intersect with medical providers can be moments of celebration.
Recently, I was granted access to a needed medical procedure related to my gender transition. It took a very long time to check all the boxes and meticulously check and double-check the steps. For me, it was more than an 18-month workup. This is not because the procedure is so complicated or risky. But instead, because of a tradition of pathologization and distrust of trans people from the past. The invasive psychiatric evaluations were demeaning enough in themselves, if not for the context of the extensive special approval process.
“Here’s the thing, transition doesn’t have to be somber, serious, or morose. It doesn’t have to be hush-hush and awkward. Those are relics of a past that cloaked us with shame.”
And it’s true; I was nervous on the morning of the procedure — not all joy and excitement. Many anxious thoughts ran through my head: “Will the surgeon be creepy or cruel? Will the staff misgender me? Will they take me seriously? Might they cut corners in care because they implicitly undervalue me?” But instead of marinating in those thoughts, I applied a strategy that my therapist and I had worked out ahead of time. I decided to emphatically and intentionally enjoy the experience — to trust and embrace the moment I had suffered so much to create for myself.
One of the memories that will stick with me is of a nurse who cared for me before the procedure. After I was all prepared with IVs and forms signed, she came back to wish me well. With a massive smile on her face, she got close and said, “Congratulations,” with absolute sincerity. I can still see her in my mind’s eye. I can feel her respect and happiness.
She saw me.
I cried and cried and cried. They were tears of joy, relief, sadness, and gratitude. It was a moment I won’t forget.
Ultimately, medical care for transgender people is an opportunity to give the gift of humanity. When providers give affirming joyous care, we feel the subtle reinforcement that we are wanted and needed on this planet. If you serve in these processions, what an opportunity!
Many additional themes were covered in the Q&A section of the webinar. Some of the topics that I would have wished to address had more time been available for me to speak include the interplay of medicalization and pathologization of trans bodies, principles of the informed-consent model in contrast to a gatekeeping model, insurance coverage, electronic medical records systems that are more affirming, etc.
The title of this post is a phrase given during the seminar by the moderator, Dr. Gerald Winslow, a respected leader at Loma Linda University, one of the organizers. In referencing my presence on the panel, he highlighted this principle that guides the policy committee in many matters. I found it a privilege to be able to add my contribution to the conversation.