Chicago’s trans and non-binary community struggles with death planning

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

“If something happens to me, I want things to go here, that’s what I want to do,” Reno, who uses he/him pronouns, remembers telling them.

A 44-year-old transgender man from Edgewater made his will with the cautious hope that when he dies, his body will be treated with dignity.

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

For trans people like Reno, as well as non-binary people, life comes with its own challenges. But so is death.

As the bereavement industry grapples with changing cultural attitudes and questions about how to respectfully lay to rest those who identify as trans or non-binary, a South Side LGBTQ community center called Brave Space Alliance is set to launch the latest installment of its Dignity. The project this month, ending an umbrella of services that focus “primarily on preventing violence and maintaining dignity in our communities,” said interim CEO Jay Rice, whose pronouns are he/they.

The project includes $400 micro-grants for trans people in Chicago, a name change clinic, and a funeral fund that will provide up to $6,000 for trans funeral expenses. The funeral fund is the first in the country, they say. And starting this month, Rice said, the Dignity Project will also provide wills for trans people in the area.

“So at the time of their death, they’ll have something written down to indicate how they want to be buried, how they want to be represented, what they want to be buried in, their name, what they want to be called, all of those things.” Rice said.

Multiple interviews with experts revealed how end-of-life issues are becoming more apparent for trans and non-binary people, including naming, misgendering, gender assisted dying and legal documentation, and how they play out in a variety of settings: funeral homes, office of the medical examiner. , media and more.

“Dead naming refers to when you refer to a trans or non-binary person by a name they no longer use. This is often their birth name, or it may be their legal name. And it’s either intentional or accidental — the intent sometimes doesn’t matter,” said Aster Gilbert, manager of training and public education institute at the Halstead Center, a community center that advocates for LGBTQ health and wellness.

Similarly, misgendering refers to when a person is referred to as a gender they do not identify with. A trans or non-binary person’s live name and gender may not match their legal name and gender markers due to the expensive and time-consuming nature of legal transitions, as well as the anxiety and emotional stress that gazetting can cause.

“If there is a person who is found (dead) and all you have is their legal documents, it may not reflect who the person really is because we are all required to have legal state and federal documents that may not have anything in common with our lived realities, said Gilbert, whose pronouns are she/they.

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

That being said, the medical examiner follows the directions of the Illinois Department of Health. “The gender of the deceased is shown on the death record or death certificate as the person was officially recorded while alive,” the statement said. “So, if she was recorded as a woman on official documents (such as a birth record, driver’s license, for example), then that is how she should be recorded after death … We are very sensitive to the issues of transgender people and their loved ones, and do our best to respect their wishes to the extent permitted by law.”

In 2021, the Illinois Department of Health’s Vital Records Division added a new option to its system: an “X” gender marker on death certificates that prints as non-binary.

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

Rice said Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner and funeral services to ensure trans people are not misgendered or given a dead name during their care.

“This is something that our community does not have the pleasure and privilege to think about, is care after death. Right now, we’re just trying to survive,” Rice said. “Launching the Dignity Project is about instilling dignity while you’re here. And after death too.”

Working with death is necessary, especially for the trans community, said Phoenix Kelly, a death doula from Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors follow the wishes of the birth family, which often means that the trans person is misgendered, given the dead name, dressed as a gender they did not identify with when viewing, and listed as such in the obituary.” said Kelly. . “So one of the things I’m trying to do is normalize thinking about what you want your death to look like after you die.”

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

“The bigger issue here is how we all need to be more sensitive and more aware in our workplaces. So don’t be afraid to just ask a question sometimes,” Sabela said. “I think we just have to stop making assumptions about everyone, especially people who are already disenfranchised… We just have to be nicer people. And I just think it’s more important than ever before. And especially when we encounter (others) in the midst of grief and loss.’

Kelly, a death doula, strongly recommends that trans and non-binary people create an end-of-life care document, naming the person authorized to make medical decisions, and that the document be signed and notarized so that it is a legal document.

“Even before I started training to be a death doula, I knew that preparing a will or some kind of end-of-life document was very important,” they said.

The Illinois Department of Health offers online resources to those who want to prepare in advance, appoint a health care proxy or make a will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago hosts a workshop on the legal steps trans and non-binary people can take to preserve their identities in death. That includes sharing information about the various forms and designations that can be filled out, “especially if your next of kin either don’t know about your gender identity, your wishes, or you fear that they will actively try to reverse it in your death,” DeWilde said. , whose pronouns are he/him. The next workshop is likely to be held in December-January, he said.

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

“The conversations about what I’d like to see happen after I’m gone have been going on for a while, but in terms of actually putting it down on paper, I think there’s a lot of fear here.” — said Sydney Kamuda of Chicago. , a 25-year-old non-binary artist whose pronouns are they/them. “It’s another scary idea that you’re entering a space where I’m going to have to explain my pronouns again and why I look a certain way.”

Kelly said one of the reasons for the need to work on death is the rate at which trans people, especially trans people of color, are being killed.

“We have these societal perceptions that we can die, especially suddenly, but taking the time to prepare can be scary,” Kelly said. “Even for me, because it makes it more real.”

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

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“We say ‘at least’ because too often these stories go unrevealed — or inaccurate,” the Human Rights Campaign notes on its website. “In previous years, most of those people were black and transgendered Latinos.”

[ In Chicago, killings of transgender women of color often go unsolved. ‘There’s no justice,’ relatives say. ]

Since the human rights campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which were of black transgender people.

According to Rice, killing trans people and disfiguring trans people means that there is no accurate count of trans deaths and, consequently, an inability to fully understand the violence that trans people face — “because so many trans deaths are not labeled as trans- of death”.

“But if we don’t know that these people who are dying are actually trans people, then how are we going to achieve any real liberation?” Rice asked.

Non-binary artist Kamuda, who was 16 when their father died of complications from lung cancer, said the near-death experience made them think about their own mortality. They said that death is one of the only unifying factors in everyone’s life.

“The main thing I’m thinking about is how I’m being treated now, not how I’m going to be treated when I die,” Kamuda said. “My only hope is that I have people around me who can stand up for me.”

adperez@chicagotribune.com