Equity and cultural inclusivity at end-of-life: A 2SLGBTQIA+ perspective
News & Updates | June 24, 2022 | Tiana Dargent
Canada is a fairly progressive country when it comes to 2SLGBTQIA+ (queer community) rights and freedoms, when we look at it on a global scale. It’s easy to believe that any member of the queer community would have no roadblocks to accessing quality end-of-life care. Unfortunately, that is not the case. Let’s look at the background.
Homosexuality was illegal until 1969. Legally, discrimination was seen as reasonable until 1995. Partial marriage equality only came into effect in 2005 (marriage equality for people with disabilities still is not in place), and protections for trans and gender non-conforming individuals have only been in place since 2017.
As we all know, social attitudes and acceptance lag behind. For example, it’s been legal for people with breasts to go topless in Ontario since 1996. Even though I have that right, I in no way feel safe to do so. My physical and emotional safety would be at great risk. Furthermore, inaction from the government and healthcare systems in the 80s and 90s lead to the death of a generation of queer people, leaving any survivors with no trust in the systems in place. Given that this generation never had the opportunity to age out of life, and advocate for change in end-of-life care systems, those systems today are woefully behind other sectors when it comes to equitable care.
Current health and end-of-life care organizations are built upon normative ideals. That is, heterosexual, cisgender, nuclear families. Queer lifestyles rarely follow or mimic this norm, it is simply impossible to live within these constraints as a queer community. We are gender expansive, our kinship networks are unrelated to bloodlines, our bodies don’t match what’s expected by looking at our government ID, and monogamy is only one of many options when it comes to relationship styles. When queer people seek to access end-of-life care, it is a struggle because the systems were not built to accommodate the realities of our lives. Care providers are most often not from our community and have a low level of understanding of its complexities. Navigating these roadblocks at or around a death is overwhelming.
I facilitate a monthly death café exclusively for the 2SLGBTQIA+ community. I routinely hear accounts from community elders about their friends needing to go back in the closet while in nursing homes or in hospice. I hear about how finding explicitly queer friendly services in their area is near to impossible. I hear people talk about how their trans friend suddenly disappeared from their community, and months or years later learning that they died. Their estranged family took possession of their body, cross-dressed and buried them using their former name, and never told any of their loved ones what happened. I hear of spouses being assumed to be friends or siblings. I hear of HRT and gender affirming prosthesis being withheld. I hear of support networks being turned away by staff because they aren’t blood relatives. None of these are uncommon stories.
I also hear that we want better for ourselves and for others in our community. We want to be well-employed in all levels of healthcare. We want to be cared for by people who understand our needs and respect the way we live our lives. We want to be with the people we love as we leave this life. We want the way we lived our lives to be reflected in how we die and how we are remembered.
Significant change can be made on systemic, interpersonal, and personal levels. Let’s explore an easy example in each of these categories.
Systemic – Partnerships with Queer Community Groups
Any organization, facility, service, practice, or group working in end-of-life care has the opportunity to be proactive about cultivating relationships with the queer community. Local queer community groups are the experts in local lived experiences and in understanding gaps in care, and current needs. Reach out and build those connections. Collaborate on programs using their expertise and your resources. Together, you are stronger.
Interpersonal – Use Gender Neutral Language when speaking to others
This is one that with a bit of practice, really can change how people feel with you. Making a switch to gender neutral language means that no matter who you are talking to, you are including them appropriately. For instance; Someone might look at me, see that I have kids, and assume that I have a husband for a spouse. If they asked that, I’d have to quickly assess if they would be a person who is safe to correct or if they would react in a harmful way. If instead they simply asked if I had a spouse, I would feel more free to respond with my queer truth. They’ve left that space there for me to be myself.
Some examples include substituting:
- Husband/wife for spouse or partner
- (Grand)son/(grand)daughter for (grand)child
- Brother/sister for sibling
- (Grand)mother/(grand)father for (grand)parent
A quick google search can provide you with a robust list to practice with.
Personal – Get to Know Yourself
When the truth of who you are sits outside of established social norms, it can be a lot of work to figure out. Everywhere you look, straight, cis norms are validated, affirmed, and reflected. People who easily fit into these norms often don’t spend much time thinking about the nuances of sex, gender, and sexual attraction, and as such may have a hard time relating to those who have had to extensively ponder these topics to get to a place of feeling right with themselves. A great way to make it easier to relate is to explore these topics for yourself. It doesn’t hurt you, or change who you are, to contemplate these ideas.
The genderbread person is a wonderful online tool for helping you understand gender identity, gender expression, and attraction.
By no means will these steps alone solve every disparity. If only that were true! But some steps in the right direction can get some momentum going.
Tiana Dargent, of Queer Community Deathcare, offers training and consultation to end of life practitioners and organizations with the aim of removing roadblocks to equitable and culturally competent care.