Special article: Chicago’s trans and nonbinary community grapples with end-of-life complexities

LQGBT community awareness.Deadnaming, misgendering and more.

Original article at Chicago Tribune.

When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.

“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.

The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.

“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.

For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.

As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.

The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.

“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.

Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.

“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.

Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.

“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.

In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”

That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”

In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.

But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.

Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.

“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”

Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”

Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.

“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”

Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.

“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.

The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.

But for some, delving into these documents can be daunting.

“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”

One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.

“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”

According to the Human Rights Campaign, at least 32 transgender people have been fatally shot or killed violently in the United States in 2022 so far. In Chicago, at least two transgender women have been killed, including Martasia Richmond in June and Tatiana Labelle in March.

“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”

Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.

Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”

“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.

Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”

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