Trans Day of Visibility 2023 Blog: an interview with Callie Riley (she/her)

Mar 30, 2023 LGBTQ

How do you see trans advocacy intersecting with end-of-life options advocacy, if at all? What similarities does the trans rights movement share with the end of life movement?

It's impossible for me to separate my experience of transness and pursuit of medical transition from my passion for end-of-life options, because they're all rooted in a desire for people to be able to do what we want with our own bodies. I've written before ( https://medium.com/@compassionandchoices/our-bodies-belong-to-us-159d0e7248f) about the gatekeeping in medical care that I've faced as a trans woman, and my conviction that our bodies belong to us, in how we do gender and how we chart our own end-of-life journeys. I don't think I can overstate that case: we should have the right to decide what kinds of medical care are right and wrong for us. That's the idea at the center of our advocacy at Compassion & Choices, and it's at the center of how I navigate the healthcare system for my own transition-related care.

Currently, dozens of states are making it more difficult or outright impossible for us to get hormones and surgery in an attempt to force us to detransition. Those legislative attacks have escalated into bans on trans people existing in public (part and parcel of bans on drag performances) and vigilante violence against trans people. It is, to be candid, extremely bleak to be a politically-aware trans person in this country right now; we all carry the knowledge that many people across the US would like to eradicate us from existence.

While the degree of attention being paid to us at this moment is new, transphobia is not. In that context, I think it's important to lift up the community care and mutual aid work of my trans ancestors. We have cared for each other when systems and institutions failed us as they are failing us today. Since the early days of the HIV pandemic, for example, trans and queer people have formed bedside volunteer and care teams for dying friends and other loved ones, and to share information about treatment and prevention options. That history repeated itself during the 2022 outbreak of mpox, when queer and trans communities stepped in to provide information to each other about symptoms, vaccines, and care in the absence of a major public health response. And today, many of us are actively helping people from states hostile to transness resettle in friendlier places, access transition-related medicine, and navigate the byzantine health care systems in order to get the care they want and need.

Empowering people to decide what kind of care is right for them, and giving them the tools they need to access that care, is central to the work we do at Compassion & Choices, and across the end-of-life options movement broadly.

What made you decide that you wanted to work in end-of-life care advocacy and/or why did you choose to work at Compassion & Choices?

My mother died of multiple myeloma when I was 17. She wanted to die at home, but because we never talked about the end of life growing up, we didn't have a care plan in place, even after she was diagnosed. She died in the hospital, scared, uncomfortable, and in pain. I've carried the scars of that with me for my entire adult life, and it's translated into a deep and abiding interest in end-of-life issues. I jumped at the chance to apply to Compassion & Choices when I learned that this position was open, and I am so delighted to have been able to spend the last year advocating for better end-of-life planning and options in my role.

Why is end-of-life planning important to you, and are there any specific aspects of your end-of-life planning that you’d like to share?

My experience with my mother's death cemented for me how critical it is to make plans about end-of-life care and options before a crisis. I'm in my mid 30s, and something I hear a lot from my peers when I talk about my work is that we're "too young to think about dying." As much as I want that to be true for all of us, I know that any of us could find ourselves facing difficult end-of-life decisions without much planning or preparation. So I just want to stress: fill out an advance directive. Talk to your loved ones about your values, priorities, and beliefs. Decide who you want to ensure your advance directive is fully respected, especially if like me you don't want your biological relatives to play that role. And make sure you review your advance directive regularly to make sure it's up to date and reflects where you are now.

Why is end-of-life planning important to the trans and gender nonconforming community?

The best way I can answer this is by example, because this is a very personal question for me. Most of my biological relatives are deeply homophobic and transphobic. I became homeless at 18 because of their hostility toward who I am as a person, and it certainly hasn't gotten any better since I came out as trans several years ago. In their place has sprung up a beautiful, interconnected family of people who love and care about me, but who are not related to me by genetics. At the end of my life and after death, I do not want anyone to presume that my biological family should have any involvement whatsoever in making decisions for me, and so for me having an advance directive and end-of-life plan is a way of retaining my autonomy and power in death, as I've done in life.