• The Woo Issue

    Death Work: Interview with Roxanne Baker and Saralee Gallien

    The Woo Issue
    Roxysaraleefeatureart2 web

    Photos by Ada Banks.

    A conversation with doulas Roxanne Baker and Saralee Gallien

    Death Work

    As full-spectrum doulas and soon certified nurses, Roxanne and Saralee have a lot of professional experience with life and death and many of the difficult things that happen in between. And yet, they reject the idea that you need certification to do their work. As anti-prison activists and anti-authoritarians, they seem to place themselves within a legacy of people who’ve done this type of work for each other as a form of love and care and survival – against the medical industrial complex and in resistance to capitalism.

    I was introduced to Roxanne Baker and Saralee Gallien and their work around death through a performance and workshop called How Do You Want to Die at the Recess Gallery in Manhattan, NY on October 29, 2016. The performance was organized by Canaries. Roxanne and Saralee had come up from North Carolina for the talk, and they introduced themselves with a vulnerability that felt both natural and serious.

    In their introduction, we learned that Roxanne and Saralee have been doing work together in and around Durham, North Carolina for six years: first as birth doulas, and later as abortion doulas. After experiencing many deaths in their community and doing support work for friend and family, Roxanne grew into her role as a death doula and currently offers her services under the moniker Foxfire Doula. Saralee is a prospective nurse and community health worker, and together they host workshops and performances under “How Do You Want to Die?” in the hopes that conversations around end of life and death become acceptable at all levels of health and care.

    During the workshop, cards from a handmade deck were drawn. Each card held a question for participants to read aloud and for us to answer privately, and share with the group if desired. Some of the questions were, “At what age did you first realize you were going to die?” or “What would you want done with your stuff?” A few days later I had the opportunity to sit down with them at the Mask studio to learn more about them and their work.


    How did you come to this work?

     
    RB: When I was a kid I got to watch my grandfather die and that felt really powerful. I got to watch my mom and her sisters make the decision to take him off of life support in the home. Several years later I went through my father’s death. I was his nighttime caretaker and the only person who physically watched him die. Then every six months after that we watched one of our friend’s parent die, like really close friends.

    I watched all of us get better at it each time a friend’s parent died, supporting that friend, trying to figure out ways to support them and their family.
     
    SG: Both of us started in the birth doula movement. I think a lot of people who’ve been socialized to provide care and have been part of radical communities have gone through that phase of asking themselves: “Do I want to be a midwife? Or a birth doula or an herbalist?” Like, how do I want to continue this lineage of care? I think there’s been a lot of wrestling with that, getting into it and then rejecting it. I held critiques of affective labor and unwaged caretaking labor and being like: Fuck that, I don’t want do that anymore. We’ve seen each other go through these phases of trying to figure out how we want to position ourselves within the world of care but also want to transform. 

    After hearing that you could be a doula for people going through abortions, miscarriages and adoptions, our group of friends who were trying to do birth doula work transformed quickly. We wanted to experience the full spectrum. 

    There’s a collective here that we were trained by, the New York Doula Project. We’ve been doulas for women going through abortions, being there with them when they wake up and helping them with the whole bodily and emotional breakdown and dysfunctions and helping them piece back together. I realize now that that was the first kind of death work I experienced. At the time I would not have felt comfortable calling it that, because I feel like we need to be careful about how we ascribe concepts of life and death in those moments; that’s for the person going through it to decide. But it’s important to recognize it as a loss. Regardless of whether it’s the most relieving and positive experience of their life or not, they’re still experiencing a form of loss – physically that’s what’s happening. I think it was important for us to learn to acknowledge it as such. When you’re politically invested in abortions being free and accessible to all it can be easy to completely dehumanize that process. We were really lucky to be trained and to realize that we didn’t want to do that, that we wanted to acknowledge the wide range of experiences people go through. For some people this is going to be a death of a child and for some people this is just a procedure they really need.

    RB: I’m kind of obsessed with old people and if you really love the elderly you’re going to have to face death a lot. After so many of our friends’ parents died I was taking care of a 94-year-old woman. Six months after our best friend’s dad died, my beautiful sweet angel Elna passed away and I was just devastated.
     
    SG: Through Roxy having that job, our friends had also become caretakers and friends with Elna and her daughter Judith. After she died, we were invited to come hang out with her dead body. That was my first experience of being around a death that wasn’t either in a medical facility or a family. I was like “Are you sure I can come over?” Roxy and Judith were like “Yeah, why not?!” There was this hospitality to it that was really natural. And I know that for some people that’s not going to be how they want to deal with it, but I thought that was really special.
     
    Another reason I came into this work was through my experience of supporting a neighbor and friend who died unexpectedly in California. My group of friends had always helped take care of her children. After she died there were no guardians in California who stepped up for the kids, so my friends took my car and drove to California to go get these kids. No one cared that she died, she had no money, she had no rights to anything. In California, when a homeless person dies the body is automatically cremated and kept in a storage facility – you have up to three years to pay for it or it’s destroyed. We recently raised money just three months before the deadline. We got all the kids together and were like, let’s do this. Before that, we got on the phone with the crematorium every day, being like, here’s where we’re at with the money, we are looking after her, she is not forgotten. That is a place where I’ve realized death work can happen. I will be the guy who can sit on the phone and use the right words and talk to someone and be like we know who this person is and you’re not going to destroy them.

    What do you do as death doulas? 

     
    RB: For me it’s going and sitting at the bedside with folks in the last minutes and hours [of their life] and offering resources like books and games and different things to help get the conversation going – with them or with their family. I’ve had a lot of people reach out because somebody in their family is dying and they don’t know how to talk to their family or how to get their family talking. It’s a weird thing, silence.

    You’re mostly with people at the very end?

     
    RB: Yes, I’m physically watching them die, which is really, really nice. One of my favorite moments of my work is the time after someone has passed and you’re the only person in the room with them. It’s like a little secret that you have together, because the moment after someone has died so many things have changed – for the people that they loved, financial situations ... A lot of work has to be done. But there is this one beautiful, peaceful moment after someone has died before you go and tell someone. Sometimes I just love sitting in that moment and being like yes. Death can be a peaceful thing. After it happens, there’s a lot of movement. The clock starts ticking really fast.
     
    SG: The nurses come in, the doctors come in.
     
    RB: Then the funeral.
     
    SG: If you don’t have an intentional team it can become kind of a circus. In nursing school we talk a lot about the importance of just taking a breath and slowing down, to not just barge into the room and take the body away. That [awareness-raising] is so important in the education of care providers, because once you’re with dying bodies everyday, it can become routine. They’re like, well, I have to do my job. 

    It’s very special that a death doula doesn’t have the responsibility of setting the time of death, so they have this window they get to operate in. They can extend things a little bit by just closing the door or being like, “we’re not done here.”
     
    RB: The urge to make the body as presentable as possible and take it far away as quickly as possible, get it over with, I think it stems from death phobia. The feeling of just sitting there is so good. When my dad died I just laid with his body, I felt his body grow cold, I just laid on him and touched him until there was nothing left. But as soon as we called the funeral service they were there like (*snaps fingers*) so fast.
     

    Because they make money off it?

     
    SG: How are you going to make money if you don’t have a time limit for these services? If they took every death with the intentionality that we should be taking it, they wouldn’t be able to be in business. 
     
    RB: I think a lot of people don’t realize that a home funeral is an option. You don’t have to call a funeral service, you can do the whole thing at home, people can come visit and touch and feel and spend alone time, have a more intimate space. You can even drive with a dead body in your car.
     
    SG: As long as you have the death certificate. Someone told us about this woman who learned you could do this and she wanted to take a final road trip with her partner. I don’t know how she did it, if she packed them with dry ice, but she did it.
     
    RB: She ultimately got in trouble, though, because crossing state lines is another thing. 
      
    RB: Another kind of work that death doulas do is legacy work, which is helping people that are dying figure out what they’re leaving behind. If they want to write something or create something to give to people, we might help them with that.
     

    When my mom’s best friend was dying, she decided what she wanted to happen to every single object that she owned. She had a few months, and my mom and her friends created this group to see her through it. It was incredible. She was like, this is what I want you to do with my letters (don’t let my husband see them, take them and have a party and burn them together), this is who gets this bracelet and this object – not because they were actually necessarily valuable in some monetary sense, but because they were imbued with meaning. It was this beautiful kind of vanity, a refusal to go without as much grace and control as she could. She spent individual time with each person in a very specific way. I was 16 at the time and she had me come lay in her bed with her and her son’s girlfriend at the time gave us acupuncture. We also watched her favorite movie, which was this Japanese horror movie from the 60s. That was how she wanted me to be with her as she was dying.

     
    RB: How powerful. Getting to see somebody die well can be life changing. A lot of people don’t get to die well or don’t know how to die well. I think part of our work is helping people realize that it’s an option. As long as you can face it and can have the conversations needed to make it happen it’s totally possible. I think that is really the pinnacle of the work.

    Can you touch on the history of death practices and medicalization?

     
    RB: The popularization of embalming in the modern funeral industrial complex is related to the civil war. When people were out marching during the civil war, as they walked towards a battlefield there would be signs from embalming companies saying, we’ll get you home to your family safe and in one piece. People were literally marching to their deaths and there was somebody saying, don’t worry, we’ll capitalize off of this.
     
    These companies would embalm bodies on the battlefield. When people died, the embalmers would hold bodies hostage and wouldn’t release them to their families unless they paid, which was super expensive.

    I hate saying industrial complex, but that’s what it is. The funeral industrial complex took a very futuristic approach from the beginning. I don’t think that everyone providing that service is a monster, but I do think it’s important to know where your field is coming from and how deeply it contributed to the way people are scared of death and what’s going to happen.

    That they can’t have their own ideas or creativity about it, because it’s all just presented to you as this package.

     
    RB: So much so that people don’t even know that there are options. You think cremation or burial, one or the other – that’s it. None of those are at your own hands, so it means giving your loved one to someone else, as their job. I mean, that’s scary. I don’t know what y’all do at your jobs, but that’s funky.
     
    SG: Women used to be in charge of taking care of the dying person in the family, cleaning the body and conducting the home funeral. Now it’s become so inverted. During the Victorian era, it became an exclusive status symbol to have access to a doctor or funerary services outside of the home. But now, with white populations in nursing homes declining and black and Latino populations rising, people are becoming fearful of their lives ending in nursing homes, so people who can afford it try to keep their family members at home. We’re seeing folks in the lowest economic sector of society having to fill the beds of nursing homes, because their family can’t take care of them. That’s seen as an excuse not to improve nursing homes, because now they’re mostly occupied by poor people. Dying in the home has become a privilege in some places.
     
    RB: Just like home birth.
     
    SG: Poor folks and people of color are often tracked through institutions their entire lives and are more likely to end up in a situation where the end of their life is institutionalized. You see the massive political work that has to be done to get one terminally ill political prisoner out – it takes a decade of organizing to get one person out. If you multiply that by the number of people who are going to die in prison, you realize it would take a national uprising to get the number of people that will currently die in prison out. 

    At the beginning of the century, workers were seen as an inexhaustible resource. So nobody cared if you died in your 40s or 50s, and nobody cared how you died. Because you were disposable, you were able to die in your home. I’m sure it wasn’t without violence, systems of power probably still interfered with your death. But now you have to have so much support around you to be able to die with any kind of autonomy.
     
    RB: Speaking of prisons and death and autonomy: in prisons all across the country, and definitely in Butner in North Carolina, prisoners have started doing peer-to-peer hospice care, which is so fucking inspiring and cool to think about. There’s a big debate on certification and different licensure for doing death work, and to me this is proof that nobody needs that. Like, if you want a license, pay them! That’s who should be telling you how to do this shit.

    I was curious about this the marketing of it as a profession – is there a licensure process that prevents people who would have this gift from being able to do it without going to school for it?

     
    RB: I started a certification process that I guess I am going to finish, but I think it’s bullshit and I really hate it. I understand people wanting to be paid for their knowledge and labor. But I feel like there are acceptable ways of trying to do that and other ways of cheapening the experience and the work that people are trying to do. Like no one should come to this work because they are going to make money off of it. Go to nursing school or get a real job. The idea that you need some kind of specialized piece of paper to care for someone just furthers the disconnect between us and the people we love, you know? I think there are things to learn from others in the death world, but that’s not one of them.

    In nursing school, do you find that you – because it is an exhausting situation, always doing things by regulations and law – do you find that it is hard to keep all of your truths about it more grounded?

     
    SG: In my role as a nursing student I try to look at the long game: my values and my beliefs versus what is actually best for this person. Whether you’re a nurse or a doula, if you’re working with a family who’s refusing to take a loved one off of life support, however you feel about the situation you can’t walk into that room with a personal agenda. You can’t walk in and be like “we’re going to take these machines off and we are going to die naturally.” You often have time – the life extension technology is incredible in this country. Everyone else is approaching this as a crisis, so you have to go in and take the temperature and figure out how to support this family making the hardest decision of their life. Sometimes you need to set small goals, like today we are going to acknowledge that maybe this treatment isn’t working, and tomorrow ...
     
    RB: … that there are not any more treatments.
     
    SG: Yes.

    In the workshop you talked about creating Advanced Directives, the legal documents that clarify who will make decisions for you if you cannot make them for yourself or for end of life decisions like whether you’d want to be kept on life support or donate your organs or not. I was thinking about the importance of this in relation to the biological family versus the chosen family. People often talk about their families when they talk about questions of death, but that’s often not who you live with or would want to make decisions for you.

    RB: Having things like an Advance Directive or communicating what you want to happen to you after you die in some legally binding way with the people in your life can be really important. Some people have amazing families – I am very fortunate in that. My mom would pretty much let my friends run the show, she knows how I feel and what I want. But for a lot of my friends that’s not true. Especially in queer communities or for people on the fringes of society, it’s really important to try to protect yourself. Families are scared and don’t know what to do, and if they hate your friends and they kind of hate you, or they love you and want to save your soul and this is their one chance – well, there’s a lot of really scary dynamics that can play out. 

    Because if you’re not married, if anything happens to you, your family by default becomes responsible. It’s strange to think of it being really important to have a plan as a young person. 

    RB: I think it’s even more important as a young person. When you are older chances are your life is set. It’s just different. 

    SG: With young people, statistically what we are dealing with is people having these unplanned accidents – motor vehicle accident, accidental overdose, and so on. Those are the leading causes of death and those are also the situations in which it might be too late for you to decide. The wilder and harder you live, the more reason to do it. Not that you should stop doing the things that make you feel alive, but I want my friends with motorcycles to fucking have Advance Directives so I know whether or not to keep them on life support, you know? The things that make us feel most alive bring us the closest to death.

    RB: Fuck the law or whatever, but it’s comforting to know that this is a legally binding document that specifies how people can and cannot treat your body. And there are so few avenues that allow us to specify how people can or cannot treat our bodies. I keep pushing the ‘many people’s parents are monsters’ thing but I think a lot of people in our generation have really contentions relationships, and no person knows what to do with your body better than yourself.

    SG: By no means will this magical document change the way the state, the police, the doctor and so on care differently about keeping us alive or not. We know that it is deeply based on race and ability and all of the contingencies of our identities. We’re under no illusion that me having an AD and that a young black man having an AD are going to be treated the same. For us it’s just one of the many tools that we want to extend. I think another one of those tools is ending the police and every other institution of death that take away people’s right to decide how they are going to live first and then how they are going to die. 

    When prisoners need medical support, we fight for that not because we think that is going to end prisons but because it’s so simple and because it is so ridiculous that it is not being provided for. That is one thing we can do while we are in the middle of this longer struggle. 

    How do we actually start to have these conversation with each other?

    RB: I think that that this is so far off of people’s radar, that people don’t even know this is an important conversation. So I think those of us who know that this is an important conversation to have should just start having them.

    Can you explain your intentions behind the card deck you used in your workshop at Recess?

    RB: We have this deck of cards with questions that we use to start conversations together. 

    SG: With the cards we tried to create these beautiful objects that catch our friends’ attention in the way tarot does. It feels a bit like getting a letter from a friend but instead they are asking you a question. But people are also interested because right now a lot of people have broken with whatever culture or religious practices they were raised in and are looking for something else. I think in this moment there’s an opening for this kind of game and this kind of dialogue.

    RB: It’s a little challenging because for it to be effective there has to be a shift in the way people are willing to engage and communicate with each other. This focus on vulnerability and sincerity feels really hard for so many reasons. I think we protect ourselves against our friends because we’re not sure if they are our real friends. Especially in a world that’s so driven by social media it’s a lot easier to project who we want people to see us as than who we really are and what we really want. But if people just broke that barrier we would realize that we actually like each other for who we really are, maybe even more so. I feel like there’s so much room to create resources around this and I’m really excited about people doing that. 

    I think it’s cool to have this structure for it because it allows people to realize they can have these conversations.

    RB: It’s also good to do it in a group setting because then you hear from other people and hear perspectives you wouldn’t have encountered otherwise.

    I imagine that if you search for these resources today you would find things that are so out of touch with reality. I don’t know where to find those resources that feel relevant to me.

    RB: Honestly there is a lot of hokey garbage out there. Stuff that I love on an entertainment level but when I am actually seeking some kind of helpful information it’s just not it

    SG: I think we have to look harder for elders who are trying to pass down their knowledge about this before they leave. We also need more information that affirms the complexity of identities in the world we live in now, older generations might not reflect that. But a lot of people are struggling and fighting to keep alive ancestral practices that are a part of their liberation movements. This needs to be a multi-racial and intergenerational conversation. The resources Roxanne and I have might not be useful to everybody, but that doesn’t mean we can’t collaborate and figure out how to open the doors to talking to more elders about this. 

    In the South you don’t have to look far to meet someone your parents’ or grandparents’ age who cared for a body in the home, attended a home burial or buried their family on their homeland. That is across race, class, and culture. That history is still alive. Roxanne has been researching these zones where you can bury people outside of a graveyard. 

    RB: Besides grave sites or cemeteries there are these sanctuaries. It’s just a chunk of land where you can have your body buried. You leave something there, like a cardboard box, to reserve the spot. When you die, your loved ones dig a hole – it doesn’t even have to be that deep – and put your body there to decompose naturally. 

    You don’t have to have a casket? 

    RB: No, that is another myth. 

    Do you have to pay?

    RB: Yeah, but this is a way that people are able to do land conservation projects. They create these sanctuaries that double as a way of protecting land. I don’t know how expensive it is to get a spot somewhere like that. My mom and I have been talking about her death since I was about five years old and that’s one of the things that is on the table. 

    Death is really expensive. When my dad got cremated we couldn’t afford an urn, so we got a cardboard box. And that was still like five thousand dollars. And then to own a copy of the death certificate is  like a hundred dollars per copy. So, you know, it costs a lot of money to not exist. 

    SG: One of the most beautiful things that has been happening after police killings of folks is that now people will immediately create a GoFundMe for their funeral and for the care of the family. The fact that that has to take place is inexcusable and devastating but the fact that raising those funds has become a normal way to respect the family and respect the dead I think is really important. 

    RB: Another potentially unspoken fear that people have about death and dying is the question of what kind of burden am I about to put on people? Especially if you don’t have resources. 

    SG: Especially if you’re the main care provider of your family. I think one of the biggest things we can do for care providers is to pluralize them. If our care providers are all dying because of chronic stress and the diseases that come with chronic stress, that is not sustainable. Sometimes the best thing you can do is to take care of yourself, so you can continue to do what you feel is the most important work. I know that sounds hokey, but if all of the best hearts and minds in this world who have these experiences around care who could transform our society, all burn out or die without us learning from them, then we can’t continue to do this. 

    RB: It’s really complicated. Because when you are someone that’s caring for a loved one who’s dying, you lose your meaning when they die. So often we live to care for someone and then once they are gone, you have the struggle of losing someone and also the struggle of gaining yourself, which I think can be really devastating work. As far as support goes, one thing you can do is to just spend time with people and help them embrace all of the new potential that there is. 

    SG: I think that on a system-wide level it is important for doctors and nurses to keep in mind that they’re not just caring for a patient. Whatever structure of support that patient has, they are part of the care team. You address everyone. I think that’s slowly happening in medicine, that’s what we’re being taught on the ground. Community-centered care, family-centered care is the hot curriculum right now. We’ve inherited language from different waves of feminism that has made visible this invisible labor. If you’re a care provider in your community, I think it’s important to really own that role and its value. Owning that role helps with setting boundaries, too, so people can think of it as work that you might not want to do at all hours of the day.

    RB: It’s important to have parts of your life that aren’t about trauma. When people are going through hard times, people want to come and sit there and talk to you and be like, how are you? And that’s not always what you want. You need to remember that you have other parts of yourself that aren’t just heavy. 

    SG: Also to not not ask people. This is one of the things I’ve learned. When I was younger I would go, oh we can’t ask them if they want to come because that would be rude, they don’t want to go to this party while they’re dealing with someone dying. But you don’t know if they wanna go to the party. 

    RB: They might need to go to the party.

    SG: I think we do that a lot with chronically ill and disabled friends. We forget about them and their loss because we are not ready to change our lifestyle to fit theirs. And then we don’t invite them to things. But you need to invite your friends to things. But also be respectful; ask to do other things than to go to a party at midnight. Maybe there are other ways you can spend time with your friends. Sometimes you need the distraction and sometimes you need people to come chill with you where you are at.

    Is there anything else you want to say before we go?

    RB: I just want to specify that the people I’m doula-ing and the hospice volunteering that I do are people that, if I was not in that room with them, would absolutely be dying alone. Either because their families don’t want to or can’t get to them. I think that’s an important role that a death doula can play, just sitting there with someone. You don’t have to know them, you don’t have to be changing their pillows and their bedsheets, just the presence of being there can mean so much. Both for the person dying and for the family. I guess I just want to emphasize that no one should have to die alone unless they really want to. It doesn’t take very long to just go spend time with someone. 

    SG: You don’t have to have answers to do that. You can just sit there. 

    RB: No answers! It’s like watching someone breathe or sleep. Requires nothing more than the willingness to be present. Which I think is a gift right there, it’s free and you just get to be. 


    Not long after we spoke I lost a very close friend in a horrible car accident and I didn’t know how I was going to relate to any of this information, it took me some time to approach it again. Though we did talk about sudden death, I realize now that for me it had been in the abstract, not as something that felt possible or close. Revisiting our conversation has been incredibly helpful and also made me face a reality that I could have easily let go unattended.

    A little time has passed and I’m most struck by the practicality, the necessity of having these conversations with each other, now, not later. Why do we turn away from them? Do we feel as if to speak about death is somehow welcoming it? Or is a turn away from life in some way? But, what if having these conversations and making plans together could be something we just did, because we want to know exactly how we each want to be cared for – body, memory, legacy, and those we leave behind. What if this is what allows us just a little more space to inhabit our own lives.

    Sometimes it seems like what we would want would be so clear in our absence. But the truth is we can’t know if we haven’t had these conversations as people know us in so many different capacities and intimacies. How do we care for the memory of a person who was a plurality, who was many, sometimes different things to so many people? In this absence we may have no say in anything. Our knowledge of their desires may not matter to other people who knew them for having other desires. All we can do is do our best to honor them, and sometimes we will simply have to let go even if it feels wrong. Looking forward, there are practices that can help us from having these things tear us apart. We can at least give each other this one tool, a conversation, a legally binding document locked in a vault, so that we can settle into our lives just a little more, knowing we will be taken care of as we wish, or that at the very least what we wanted will be known. Our agency through these documents allows our friends and those we share life with to not feel that we were ripped from them as carelessly.


    Want to learn more? Check out the following resources recommended by Roxanne and Saralee:
    - Follow Roxanne Baker on Instagram @foxfire_doula and get in touch with her via email at foxfiredoula@gmail.com
    - The Final Exit Network in an organization invested individual self-determination and the right to die with dignity
    - Iele Paloumpis is a death doula in Brooklyn, NY

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