A Ministry Of Presence: A Queer History of Community Death Care

When we picture a funeral, many of us think of someone laid out in their best. Some people choose their burial ensembles years in advance. But what happens when those in charge of making end of life decisions, typically someone’s next of kin: birth family/ family of origin, has never supported this person’s love for high heels, diamonds, and velvet? This lack of support can further traumatize living loved ones who have known their family member as a dapper dresser who’s slacks are never creased when they come to the viewing and then see a stranger in a skirt. So many queer and trans ancestors stories have been hidden and lost to us because of these exact indignities.

As we rediscover past traditions and ask age old questions, several individuals and organizations are making it their mission to provide culturally competent death care to communities who otherwise do not see themselves represented in these spaces. An interfaith panel sponsored by deathwork collectives Reimagine, Plaza Jewish Community Center and MJHS Hospice and Palliative Care, alongside an interfaith panel of spiritual advisors recently gathered to discuss how queer and trans peoples’ identities and experiences are often left out of conversations around death and dying even though, statistically, they are dying more often than their cisgender/heterosexual peers.

Whether it is a masculine of center person being buried in a matronly dress, or long estranged biological relatives being allowed to make important end of life decisions instead of someone’s partner of the past three decades, the indignities a queer person faced in life, are not automatically resolved by their death, if anything, they are illuminated.

The definition of a doula is one who serves. Many choose other titles because the literal translation is a female slave, however the caregiver role that the various titles encompass is generally standard. Most commonly, doulas assist people during their pregnancies, birth experience, and postpartum. Some specialize in meal prep, others can teach you everything you’d ever want to know about things like infant massage, or baby wearing. The human experience is often summed up into three stages: birth, breath, and death but anyone who works in one sphere can tell you how often these stages intersect. Breath work is birth work is death work is breath work; and while birth is the most common stage associated with doulas, the role of the death doula is integral to the care of the dying and dead.

Doulas have often taken on community health and peer counseling roles. While doctors and nurses handle the medical side of care and treatment, a doula focuses more on emotional and informational support, for example, providing meal train tips, and support groups for loved ones. Doulas oftentimes come from the communities they serve and this cultural humility is often a crucial missing piece from someone’s overall hospital/ hospice experience.

During the AIDS crisis, queer and trans folks were abandoned,  where prior to this they were ignored, during the crisis they were disappeared. Because of homophobic stigma, it took years for proper research about transmission to come out, resulting in many health care professionals flat out refusing to have any contact with patients with HIV. During these times, it was community health workers, and fellow queer people, who picked up the slack. They tended the sick, set up programs to get desperately needed medications to those who needed them, and some went so far as to turning their homes into makeshift hospices.

Today, there is still so much stigma surrounding community care. It isn’t “legitimized” in the cold, sterile way that surrounds so many of our life’s transitional rites. Unchecked homophobia means that the queer and trans professionals with the life experience to understand and support these patients are kept out of these positions by systemic barriers and homophobia. Many of these positions are deeply intertwined with spiritual institutions that will fire a pastor for being queer, not to mention the trauma many queer and trans folks have faced in their own spiritual communities due to homophobia. How can comfort be found where the harm was inflicted? How can one be healed in the environment that made them sick?