Conversation with Tiana Dargent from Canada - founder of Queer Community Death Care

Kasia - Before I ask you the first question, I would like to make sure that the way I talk about the LGBT community, and I describe their members is correct. I imagine that there will be readers who won’t be familiar with some terms we are going to use today. You called your project Queer Community Death Care and its aim is to create a space of support for all members of the 2SLGBTQIA+ community in matters regarding end of life, death, dying and grief. You explain that when you talk about the support you offer, you use the generic term, the queer community. Please tell me more about these terms.

Tiana - Let me go through the whole acronym first. So 2S stands for two spirits and that’s used by indigenous people only to show their spiritual and gender experience. L means lesbian, which generally means women who love women. G is gay so men who love men. T is transgender or transsexual so that would be people who feel that their sex or their gender is different than the one that was decided upon at birth. Often, we will decide what somebody's gender is based on how their body looks. And sometimes it's accurate and sometimes it’s not. Q stands for queer and it does encompass a lot of different things. Some people, generally older, don't like to use it, because it just doesn't feel right with them and they feel discomfort because of its history as a slur. But generally, the people that I know in my community use it comfortably so I feel okay using it with the people that I know. I is intersex. Genitalia is not binary so sometimes it is not all the way looking like what you would consider male or female anatomy. There’s lots of variants in between and you might not even know that you are intersex unless you have chromosomes tested. Intersex people are as common as redheaded people. And A would be a-gender or a-sexual. That means that you don't feel like you belong to any gender that exists, you have no gender or you don't relate to your sexuality. + indicates there are so many other things because we don't know how to describe everyone. So it's anyone who does not fit within cisgendered heteronormative sexuality lifestyles or people who are not sure or anything I can’t even imagine. I decided to use the word queer because it’s shorter. For me it incorporates everything and it shows a bit of my political as well as my community meaning.

Kasia - As far as I'm aware, people from Canada form a very liberal society. Canadian people who belong to the queer community can marry, adopt children, their discrimination is illegal and conversion therapy has been also banned. So, why is there a need to have a separate support channel for the queer community in matters regarding death, dying, supporting in grief and end of life?

Tiana - I agree, we're generally a very liberal society in comparison with other countries that have more restrictive governments, religious institutions or just cultural practices. And that's great but I don't think that our society has completely equalised everybody. Just because we have some protections doesn't mean that people feel equally supported in all areas of life. Things like conversion therapy were only banned this month. Decriminalisation happened in Canada in 1969 which meant that it was no longer illegal to be queer. You wouldn't go to jail for saying I'm gay but people still had not accepted that. I believe it was in the mid 90s, when discrimination was outlawed. You wouldn't be arrested, but people could still discriminate against you for 30 years. Now we're just untangling all of the consequences of these restrictions.

Things like death care and institutional places have not created their system including queer people. Rules and common practices were made with a nuclear family or heterosexual couple with good ties with their family in mind. So we're just trying to show that it doesn’t quite work for us because it does not welcome the diversity of lived experiences.

I'm not necessarily looking to make a separate stream for queer people, although some people prefer that because they want to be cared for by people who are like them. It's more to bring everybody up to the same level so that every person who enters into a palliative space or a care space can feel supported for the entirety of who they are.

Kasia - What are the difficulties members of the queer community face while accessing services around death, dying, supporting in grief and end of life?

Tiana - One of the main fears that comes up in the conversations I have with people is about going into a nursing home or a hospice and having to go back in the closet to get good care. It's less common so far for older people who are queer to go into these places, because the generation before this one, mostly died because of AIDS so they were not going into nursing homes as much. Even those who survived AIDS did not trust the medical community, because they failed them during this crisis and as a consequence they did not go into palliative care hospices, because they just knew that they would not be cared for as whole individuals in that system.

The other thing is a negative experience with doctors. Individual doctors can have individual beliefs and they can be homophobic beliefs. They might not necessarily say ‘I won't treat you’, but they won't treat them well and kindly. These two things keep people who are sick and dying out of those places, or out of feeling welcome as their whole selves.

Kasia - I assume that this can create an isolation and might make their health and wellbeing situation worse.

Tiana - Exactly. We do have marriage equality here but often, queer people don't have the same goals for family and marriage, as heterosexual people often do. We're already living life a bit different than the normal so we can re-examine the way we want to live. There are a lot of people who have multiple significant relationships of different styles. So, often things like forms at medical places will say: Who is your spouse? But what it really means is who needs to be advised, who is important to you and who can make decisions for you. We often assume that it’s a spouse or a family of origin but it is often not because relationships do not always look one way. And those assumptions are not always correct and it can be exhausting for someone to have to explain over and over again how things are for them. It would be easier if more people understood that things can look more different. Broadening people's concepts of what family can look like and what community can look like, is good for queer people. And in the end, good for everybody.

And another thing that I hear a lot in my conversations is an obstacle for transgender and transsexual people accessing healthcare. A lot of healthcare professionals still have, because they've been taught, a very binary way of thinking of how males and females look and act. Bodies are so different and there's everything in between but we often treat anything in between as shocking, horrible, strange or something to be concerned about. So people are reluctant to go into care because it is kind of new to be open about this topic and to have things like hormone replacement therapy or prosthetic breasts or penises in your clothing. People don’t know how to navigate that and it can be very frightening. Imagine that you are going into a hospital and somebody is going to take your dick away, so you won’t have it anymore and you won’t feel like yourself. Or it could be that you want a natural burial and be buried with your prosthetics but how can that happen if it's made of non-biodegradable materials? There is a lot of questions that transgender and transsexual people have to face that don’t have a systemic answer yet. And so it's about finding what those common experiences are for people within our community, finding solutions and answers and providing training to the people who need it.

Kasia - I've read that you cooperate with the home hospice association. Does you work is also about raising awareness around this topic and encouraging service providers such us hospitals or care homes to create services for the queer community?

Tiana - The home hospice association I volunteer with does advocacy and support so that people have the resources they need to die the way they want to die. So through them, I run the Death Cafes for the queer community. I also speak on conferences and panels and to organisations about the obstacles that queer and trans people face with accessing care, and what they can do as individuals or as members of an organisation to provide better care.

Kasia - So what exactly can we as individuals and community do to improve they way we support the queer community?

Tiana - There's one thing I always tell people when they say: what can I do? I ask them to think about their own sexuality and gender and what they mean to them. A lot of people who are cisgendered or heterosexual just take it for granted because society reinforces it and they happen to fall into it.

Another thing I would suggest is to use gender inclusive or neutral language as much as possible. But not just when you think the person that you’re speaking to might be queer or trans. For example, I can ask you whether you have a spouse instead of a husband. Using a gender inclusive language means that it will include everybody automatically and it doesn't assume that you know if the person is gay or straight, because you can't know it by looking at the person.

We can also offer our pronouns, which are for me ‘she/her’ anytime we introduce our name. You can’t know somebody’s name or their pronouns by looking at them. But I wouldn’t recommend this in a country where things are more restrictive, unless you are in a place of social safety to do so.

Kasia - And what about admitting that you don't know a lot about the queer community, and you don't really know what to do to make a person you speak to feel comfortable? Is it all right to say: I don't know how to support you, but please tell me, how you would like to be called or treated’?

Tiana - Absolutely, yes. Because people are just people and I think it's more painful when people pretend they know what's right for you.

Kasia - You’ve already mentioned that you run online Death Café meetings available in English for participants from all over the world. I know that you once even had a participant from Poland. Have you noticed any differences in the behavior of people who come from more restrictive countries?

Tiana - Yes. I would say that at every death café that I've run, I've had at least one participant from a country where it is not legal to be gay. And in those cases, most of the time, folks don't speak as much because they have probably had less opportunities to speak openly. It can be overwhelming to hear a lot of people speak about something that you feel so guarded about. So often there'll be more observing than participating, which is completely okay. Sometimes they share with us information about their own ways of doing things because they’re operating in a shadowy kind of way. So they’ll talk about the secret funerals they have because they won’t have access to the body of their community member.

Kasia - What are the topics which are brought up the most often during your Death Café meetings? Death, grief or end of life care?

Tiana - It is all of those things. Sometimes people come with a recent death or with the grief they want to talk about. Often people want to talk about difficult situations. I have heard multiple stories of young people saying: ‘My friend has disappeared, I don't know what happened’ and they found out 6 months later that their friend had died and the hospital called the family and the family came and never connected with the community. So we have a lot of people who have grief with nowhere to put it. We also have a lot of elderly folks who are coming and saying: ‘I am 80, and I think it is time I start thinking about my death’. I had recently an elderly lesbian couple come and they have been putting this topic off because they didn't know how to engage with the system that exists, but they are getting closer and closer to an age where they think it is going to be necessary and they were asking questions about how to fill out forms to make sure that each other's rights and lifes are respected.

A lot of times we just talk about our own mortalities, and ask each other questions like: How do you think you are going to die? What do you think happens after you die? Who would you want at your funeral? or What's the best funeral you've ever been to?

Kasia - This is a good question. Very unusual.

Tiana - Best funeral, right? Sometimes you think about what's the best wedding I have ever been to... but you can have a good funeral too. So we talk about all kind of death things, not specifically queer death things, but with only queer people because it creates a sense of comfort and ease. You don't need to worry that you are going to say something too gay and somebody in the group may have a bad reaction.

Kasia - I am trying to find out how people all over the world approach death and dying and how they support each other when they face a loss. Have the way you were brought up, the country you live in or your religion if you have any, had any impact on the way you approach death, dying or you have experienced grief in your life?

Tiana - I have always lived in Canada and I was born into a catholic family but we didn't go to church or anything like that. The message I received from my society was: you live a good life and go to heaven and that's the general idea. The relationship to death in my family has been very separated and so the same way it is for many people here. As soon as somebody is getting sick, you send them to a hospital, they are away from you and then when they die you send them to a funeral home. It is very like sending it out away and not seeing the particulars of death.

And a significant moment for me was when my father died when I was 18. My family didn’t have a relationship with death and we never talked about him anymore. My feelings about it were never asked and although I felt intense grief, I didn’t know what it was at that time. I felt really disconnected from it. I think it took me 20 years to realise that I had not processed this death at all and I want to have a better relationship with death because it felt so like not part of my life even though it is a part of everyone's life.

When I was pregnant I participated in a class run by an amazing woman who taught me everything about the whole process, the pain management and what to look for in my body. I felt very well prepared to give birth after learning from her. Later, I found out that she was also helping people prepare for their own death. I thought: Ok, I might not know how to grieve but I can learn how to plan and prepare. So I went to her course and I planned my whole death basically. The course was to examine what all the choices are available to you and to make as many decisions as you can ahead of time and to have the conversations with important people in your life about it. So I started preparing my own death, and having these conversations with people important in my life about what I want and what they may want. I love to be somebody who is in service to my community and I am very integrated in queer community so I decided to learn more about end of life care and take some more courses and to offer whatever it is that I have learnt back to my community.

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Tiana Dargent (she/her) is a white settler, cis woman, queerleatherdyke, and mother currently living on unceded Algonquin Anishinaabe territory (so-called Ottawa). She offers support, guidance, education, ritualwork, and reassurance to queer and queer-adjacent community members who are planning for their eventual deaths, who have received a terminal diagnosis, who are caring for a loved one who is dying, or who have experienced the death of a loved one. Tiana offers this service outside of a capitalist framework. She also facilitates regular discussion groups for the queer community around the topics of death, dying, and community care. You can find out more about her offerings at queercommunitydeathcare.ca