The First Walk
Updated: May 19
a transgender obituary writer has to write his own will, which leads him down this rabbit hole of research
In 2013, the FBI began to track hate crimes against TGNC [trans and/or gender non-conforming] people. Since then, an approximate 302 deaths of a violent nature have been documented by the Human Rights Campaign. The victims have been overwhelmingly overlapping in characteristics such as: being a person of color [69% being Black, 15% Latine - which I write with an e rather than the english x because it is the actual Spanish way to say this], under the age of 35 [77%], etc...stats can be found in this HRC report.
2020 was marked the deadliest year on record, with a terrifying 37; this was the same year we unfortunately lost Monica Roberts, founder and editor-in-chief of TransGriot, a renowned blog that covered issues in relation to TGNC people of color as well as the fatal violence they face, to heath issues some attribute medical neglect to having to do with. She described herself as a “proud unapologetic Black trans woman speaking truth to power and discussing the world around her.” [Read the world’s largest LGBTQ media advocacy organization GLAAD’s memorial for her to learn more about the impact of TransGriot and more of her work].
The Lead Up
2020 was also the year I began working for a non-profit organization centered on telling trans stories to save trans lives, where I would eventually become the obituary writer for our trans siblings lost to violence, which I began to do in 2021, the now ‘deadliest year on record’ for us (at the time of publishing this).
There were 57 losses reported, though we know so many of our siblings go misrepresented, and henceforth never properly honored in their moment of passing. There was a 54% increase in violent deaths the year I began writing obits. I never knew Monica, or what her experience as a homicide reporter for our community was through firsthand accounts. I only know my experience. In summary, it was one of the most fulfilling yet difficult things I’ve ever done: have to sift through so much inconsistent media about a viciously murdered persons’ identity. They all deserve so much more. As do those of us still living.
Cases of loss I was writing for/about would often develop into conflicts between the estranged family and the chosen family of the individual, with arguments coming down to the pronouns used to refer to deceased, the pictures of them used and their physical presentation within them, the name being said, the way they are dressed in the casket [which includes or doesn’t include chest binders, packers, other gender affirming garments/makeup depending on the preference of the deceased], should they choose a burial and a service. And it wasn’t just about a funeral.
When the next of kin is transphobic, they can say whatever they want (names, pronouns, etc.) - and those choices go on to be published in news reports, autopsy reports, obituaries written by publications in communications with the blood family, cases prosecuting the criminal to be held accountable for the death [even though the cause of death is blatant transphobia which should be an immediate cause for concern in court, with many cases relating to boyfriends or ex-boyfriends who do not feel self-actualized with their interests in healthy ways being 19% of documented deaths since 2013, one-tenth of murders were by a friend or family member...who also gets to control what's said.] et cetera.
There were a number of times I was brought into the arguments, because one side would either use me as an example of honoring the person, or they’d use me as a representation of being the “problem”, whenever used as a weapon by transphobic cis people. Of all of the cases I worked on as an obituary writer, none of them involved TGNC persons who have set up their end of life plans ahead of time. Of course, a violent death is an unexpected one. But, there is no such thing as being able to know the exact time of your death, regardless of what is killing you. If death can do that to us, keep us on our toes, we should be able to do that to death. We need to start regulating preparation the second we hear about it, and we need to start talking about it with our loved ones, starting yesterday. This cannot be stressed enough.
I say all of this to give you a descriptive painting as the backdrop to the work I was doing. Want to guess how many lost siblings have been misgendered and/or dead named [the use of a person’s name assigned at birth that they never/no longer aligned with] by the media and/or police in the United States since 2013? 70%. Seventy. There was so much I had to sift through in the researching part of the writing process. What was the true name this person aligned with? What were their true pronouns? Were they socially transitioning without their families knowledge, did the family know? Were they okay with it? Are they now in charge of the records and reports? Is this photograph of them I’m using for the obit portrait accurate to how they presented before they were murdered? Is this lost person somewhere in the afterlife shouting at us because we’re doing it all wrong?
No, we cannot save all of our friends from being killed with our own bare hands. And no, we can’t force a publication to change the name they're using for someone if the legal next of kin ordered them to use specific information. There is, unfortunately, nothing we can do when this happens. Technically, what they’re doing: misrepresenting these people, isn’t illegal.
The First Walk
I took the memories of my experiences with both writing these obituaries and being diagnosed with a disease that required I have an end of life plan in place as soon as possible, into a conversation with someone I hold very dear, who deserves their choice of anonymity be respected. I’ve done as much as I think I can to help myself, but I couldn’t do it alone. It sometimes takes the help of places like where he volunteers, and people like the founder. This is not an organization that has social media or public websites of their information, as the primary concern of its members is the physical safety of the community it serves. That being said, the names of people have been changed, and the name of the location I went to has been withheld from this article.
“Sally” is a founding member of an underground organization that has survived in a major city in the US through invite-only given by word of mouth…for the last fifty years. This org is essentially a magic wardrobe leading to Narnia, only ‘Narnia’ is a safe space for TGNC individuals, more often than not elder transgender women [elders being considered as people over the age of 40+, given the rates for suicidality and for deaths via hate crime and medical neglect are so high among TGNC people], seeking a chance to discover themselves before it’s too late. There are rooms in the entering spaces of the building I’ve been in that serve as dressing rooms for those too afraid to be themselves in public, to get a chance to change into something a little more comfortable before dinner with their friends. You can book an appointment for someone to do your hair and makeup as you’re changing, and the fellowship areas where everyone congregates are full of beautiful TGNC people embracing each other for the amazing people they are. Only, they aren’t the only ones present. The rooms also hold space for cisgender allies, whose careers offer services not typically advertised as ‘trans friendly’ - like a doctor or a funeral director or a social worker. People who work in fields that have to do with legal information…like your dead name.
Sally finds people like this whom she trusts to take care of her new friends, as they try to address all of the needs they have as what I like to consider your ‘baby trans’ phase. Part of this is a special activity we’ll call the “First Walk”. The First Walk consists of a trans person dressing into something that makes them feel like their most beautiful self, and choosing a few people within the safe circle of people in this group, to link arms with as they go out onto the street to walk however many blocks their comfortable with, as themselves, for the first time. I was lucky in that the last time I went, the person taking the walk chose me and the doctor, whom we shall refer to moving forward as ‘Benny’.
Benny was familiar to me in that they worked on a theatre project I was recently on as a care provider, and also once worked at a healthcare facility I hold dear, as it is where my primary care is: Callen Lorde, the global leader in LGBTQ+ healthcare. Benny is now in studies for deathcare work. “The best way we can protect ourselves and our history when we pass away or god forbid fall victim to a hate crime against us, is to be ready as soon as we can.” Hearing stories of patients lost and misrepresented held a heavy weight in my heart that began to sink into my stomach while we walked. The First Walk member of the cluster of us is blissfully unaware of the context of our conversation and living in her own world, protected by our confidence and care.
“I’ve even seen people witness the lack of justice within memorializing a friend, and choosing to have a conversation with a close member within their chosen family, regarding a legal marriage without changing their friendship, for the sole purpose of the protection of having that person who sees and respects them as their legal next of kin, protecting them in the afterlife through that bond enabling them to accurately portray their lost spouse.” I am not surprised by this information, given the history of LGBTQ+ partners adopting each other before marriage was legalized, in an attempt to be the next of kin of the other, for reasons like this safety, among others. As recently as 2013 a gay couple changed their legal status in relationship from married to father and son, to avoid Pennsylvania’s Inheritance Tax, as they are now older. “If we just live together and Gregory willed me his assets and property and anything else, I would be liable for a 15 percent tax on the value of the estate," John told ABC News about this change of legal partnership-to-’parentship’. “By adoption, that decreases to 4 percent. It's a huge difference.”
I told Benny I wasn’t too keen on the idea of being adopted by a friend of a partner - especially so young. As a person in my mid-twenties, I don’t know how much of a benefit it would be to my life to have to sort out health insurance, what would change if I were to apply for disabilities independent from them and then get adopted, whatever other major “I have my life together” things through the approval or disapproval of a friend. And what if we fall off with each other and grow apart over time? They’re still my “parent”. I can’t un-adopt myself. Benny suggests starting by choosing a close person in my life to be the phone number on my medical ID, someone who respects me. And doing the same with a healthcare proxy. I finished the walk with Benny and our newly self-actualized friend, and soon scrambled to the nearest way back home, to dive into research on any possible organizations or resources on what we’re supposed to do to prepare ourselves, to protect our people.
The "Trans Death Care Agenda"
A healthcare proxy, also known as a your health care ‘Power Of Attorney’, is essentially someone you assign [through paperwork at your local hospital and healthcare facilities] as the person who makes the decisions on medical protocols for your body if you are ever in a condition considered ‘too sick to speak for yourself’. In most cases, a healthcare proxy cannot be overridden by next of kin, should they disagree with whatever decisions you came to in terms of your treatment with your proxy before the moment of sickness arrives. It’s more than filing paperwork with someone; it’s just as important to follow this up with an in-depth conversation with your new proxy surrounding what you would like your healthcare to look like depending on different circumstances, though sadly your proxy's ability to protect you falls useless outside of a medical circumstance, so that case still allows for problematic next of kin to sweep in and challenge things.
With an advanced directive, otherwise known as a living will for healthcare [without any rights to control of belongings learn more about advanced directives here] your same sort of loss of autonomy happens, by choice of your own and a friend/partner/community member. As a part of the choices you make in your living with this passing over of body control, you can also prepare a Do Not Resuscitate form [what it sounds like, you decide who is given the authority to "turn you off", and you can make the decision with them before you're in that situation]. And then...you're dead.
There's a bit more paperwork to be done! It THEN becomes wise to have filled out a Disposition of Bodily Human Remains [DBHR] form, which would grant those people control over your remains [here’s the New York state form for DBHR application, as well as the New York state Order to Not Resuscitate, as examples]. Otherwise, the body goes to the aformentioned 'legal next of kin' and a lot of this was for nothing. DBHR forms also oftentimes override the power of the next of kin, and your agent could be whomever you chose to protect you after you’re gone. This proves that marriage and/or adoption aren’t the only ways out of escaping transphobic misrepresentation in the afterlife.
There is so little out there for TGNC [and Intersex] folx when it comes to palliative and end-of-life care/preparation. We can’t feel hopeless, though. Our community has come so far, using so many creative loopholes and workarounds to make sure our vibrance and history and health is preserved. I want so much more for us and how we take care of our EOL plans. Society often moves too slow for the progression of change, and this is a painfully perfect example of that. Below are some of the safe spaces that offer help with end-of-life planning to those within the TGNC sphere of existence, that, with fingers crossed, can help you feel calmer about your end-of-life plans, or being an ally to someone asking you to be a part of theirs.
Care at the end-of-life for LGBTQ+ seniors, Hospice Care of the Lowcountry
Caring for an Unconscious Transgender Patient at the End of Life: Ethical Considerations and Implications, The Official Journal of the Hospice and Palliative Nurses Association
Exploratory Analysis of Barriers to Palliative Care: Issues Report on People Who Identify as LGBT or Intersex, Austrailian Government Department of Health
For those with access to academic publishers, chapter 35 of the Oxford Textbook of Palliative Social Work goes into care with the LGBTQ+ community.
“Fostering a Safe Space for Our LGBTQ+ Patients and Staff” - A palliative care physician shares anecdotes from experiences with LGBTQ+ patients, and how care can be improved for them.
“Hiding who I am”: The reality of end of life care for LGBT people booklet from Marie Curie, a UK charity supporting people living with terminal illness. Subjects range from anticipating discrimination to addressing the research gap, the complexities of religion and LGBT end of life care, and more.
Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs, Deborah Farmer, Associate Professor, Department of Behavioral Sciences, Winston-Salem State University
Hospice and Palliative Care Ontario does a lovely job at outlining all of the issues worth addressing within palliative care needs for LGBTQ+ individuals.
LGBTQ+ Elder Health Care Guide, RetireGuide
Psychosocial and Spiritual Care Guidelines for LGBTQ+ Hospice Patients, VITAS Healthcare
Report: How to deliver personalised end of life care for LGBTQ+ patients, HealthWatch Brighton and Hove, for medics
The National LGBT Cancer Network is improving the lives of LGBTQ+ survivors of cancer as well as those at risk through education on increased risks, offering safe end of life care, training healthcare providers on how to become a beacon of those same principles and services, and more.
The National Resource Center on LGBT Aging provides an excellent in-depth look at our options of protection through their Advocate’s Guide to Creating End-of-Life Documents for Trans individuals.
They’ll Think of Me Kindly When They Come For My Things: On Transness and Death, Order of the Good Death
What if Death Care Were Designed for Trans and Nonbinary People? By Nix Kelley and Isabel Knight
5 Tips for People Living with Serious Illness Who are LGBTQ+, Get Palliative Care