What Would an HIV Doula Do?

 In 2015 a group of artists, activists, clergy, doulas, educators, poets, filmmakers and writers interested in exploring what is needed within the ongoing HIV/AIDS movement met for a day long discussion called TIME IS NOT A LINE, building on the 2014 WE WHO FEEL DIFFERENTLY journal issue.

One of the three sessions they held was entitled: WHAT WOULD AN HIV DOULA DO? Building on the growing role doulas are playing in birth, death, abortion, gender transition, and other important life moments , the gathered group wondered if there wasn’t a role for doulas to play in the lives of people living with HIV and those made most at risk?

Key to asking the question is an understanding that as it is now HIV testing, how people learn about their positive HIV status, and the role of testers and others is in need of review and change.

Below is an edited transcript of the discussion with photographs.

Lodz, Allie and Kat

THEODORE (ted) KERR: At least once every few weeks I get a message from a friend asking if I could suggest a place or a website they could share with a friend newly diagnosed with HIV. Most often these friends of friends already have the medical attention they need but are missing other elements of care like help in telling their parents, a sense of community with others living with HIV, or a place where they can talk about how AIDS meds might interact with various drugs they like to take. After a few hours of googling, and speaking with other friends of friends I have a small list of suggestions I pass on. In receiving these requests I often think of the horror stories I have been told about how people learned they were living with HIV and the days that followed. A common theme is a long lasting sense of isolation, institutional mistrust and loneliness.

Out of all this a half-baked idea has formed in my mind: what if upon learning you had HIV you could just text out something like, “I HAVE HIV” and then you received a text back within 5 mins with an offer to talk on the phone or meet for tea. Then you would be put in contact with a sensitive, AIDS aware person who could talk you through how you were feeling and over the course of a few days or weeks or months put you in touch with other individuals, organizations and resources to aid you in living with HIV.

But I always hit a roadblock around the question of how and who. I know the how is easy for someone else to solve, there is some programmer who could make the, “I HAVE HIV” app in 5 mins. But for me the question of who would be on the receiving end of theses texts is the stumper. And it makes me reflect on this moment we find ourselves when it comes to the history of responding to HIV. In a little over 30 years HIV has gone from a “death sentence” to something people can live with if they have access to medication and quality health care along with financial, emotional and spiritual support. For some people HIV is a reality they can integrate within their lives, for others HIV underlines many of the systemic issues they have been living with. For others HIV is the last straw in their delicate balance of survival, or one last link to getting the help they need.  

Because of these complexities, I see this as something more than a mentorship or buddy program. Those models are important but when I think about who should be on the receiving end of these texts, or phone calls or emails I have a different model in mind, or rather I think a different model is needed. I am just not sure what it looks like. At the very least they have to understand that diagnosis does not begin with a positive test result, and that for many people the specter of living with HIV has been hanging over their heads since childhood.

In this search for alternative community care models, I started to read about doulas, and how they involved not just in births anymore but also abortions, death, gender transitions and other pivotal moments in someone’s life. It seemed to me that learning you have HIV is a moment where a doula might come in handy, someone to support you in your new reality. But with that in mind, what would an HIV Doula do?

So here is what I am thinking for how this conversation can happen: we hear from Lodz to get a better sense of what a doula does, what a doula can do, then we will hear from Martez and he will talk about the testing piece, because that is part of what he does in the world. And then we will hear from Michael around what are other ways we can think about care. And then we are going to hear from Tamara who I think approaches health in a holistic sense within a diverse community of people. Then we will all just dive in. Along the way I am sure you are all going to add your own stories.

Lodz, Kat, Pato, Martez

LODZ JOSEPH: So in the traditional sense of the world doula is from Greek and it means anywhere from Female Servant to one that is with accompaniment one during birth. Some people get really caught up in the idea of a woman that is a slave that is taking care of you during birthing experience. So some people are like, I am not a female slave but accompanying you during your birth is a general idea and understanding that through labour, from the time that labour starts to the time you have a child and understanding that there is postpartum care. It’s not just that you pop a baby and good luck.

There are doula collectives, there are people that work by themselves, there are people that work with “low income women”, that maybe the government provides the subsidy for.

Generally you do some prenatal visits before your client delivers. My mentality is, whenever you are needing more support I come to your house, or I meet you at the hospital. For me your contractions can be 30 minutes apart, two minutes apart, whenever you need more support and we are communicating, I will come and support you. And then wherever you are giving birth, a hospital, birthing center or a home I will be there because I have those experiences.

After your baby is born, my job includes helping you breast feed, getting you home and getting you sleeping. And then including one to two post birth visits. Some families are like, “I got my baby I am good.” And some families are like “Come over right now. I just got home and I don’t know what to do.” So it depends, everyone’s experience is different. But this year I started to do postpartum work, working with families, one month after, two months after and that was when I stuff gets real. It is not just bliss anymore, it’s like the logistics of this new person.

I think for me what being a birth doula is—seeing women sometimes by themselves, sometimes with their partner— acting as a kind of go between between life and death. Anyone can tell you that you can easily die in childbirth or the child can die in childbirth and that is true. And that is why sometimes people need the support of medical intervention. Some people have their children at home and they are chill. People go through this really transformative experience.

As a doula you are there to hold space for them. I am not the doula that is all up in someone’s face. Maybe when I first started I was. When I was inexperienced I was really involved, massage and oils. But I grew to learn that while all of that is important, my worth is really my presence. That is why people pay my fee. They want me in the corner. They want me to know when you and your partner need to do nipple massage and that I will use my voice to tell the nurse and the care provider that we all need to leave the room So I think that is what I bring.

As for today, because I used to also manage HIV programs in national and international settings it was very odd to hear this question: What would an HIV doula do? I have been thinking about it quite a bit. What that would look like, dreams, ideals, and then logistics. So it will be interesting to hear what other people are saying.

TAMARA OYOLA-SANTIAGO: Can you talk a little about your experience with allopathic medicine? (Allopathic medicine is mainstream medicine; typically uses pharmacologically active agents or physical interventions.) I ask because I never heard of a doula until I moved to NYC. So for me it is a NYC phenomenon. But I have heard of midwives. In other spaces in my life experiences, midwives did that ‘space holding’ and patient advocacy.

LODZ: Great question. Doula: waist up, Midwife: waist down. Your doula should not catch your baby, not really, not ever. If they do, that means your midwife is late or something like that, if it is home birth. It does happen. But that is not the plan. What happened over time in the medical system midwives had a lot of patients to manage so it was no longer feasible for your midwife to just be there for a four-day labor.

By the way, that is the longest labor I ever supported. So I did not really ever leave the client. Fortunately I lived a few blocks away. I would cab home, shower and then come right back. Midwives do not do that. They are going to check maybe, send a birth assistance to make sure everything is okay. But they are not going to stay that whole time. Midwives are about delivering that baby. They may stay 12 hours. They are there to catch the baby make sure the mom is okay, the child is okay, that is really their concern. Midwives and doulas have a really close relationship, even birthing centering midwives. They will get on the phone with the doula and be like, “How does she sound? You think she should come in? Should I really come in or should I go and get lunch?”

I am starting midwifery school so I am about to transitions to catching the baby, and taking care of women in a different way. Not saying that midwives are not compassionate. Everyone has their own style. Some people are too blunt. They will say, “You are just not progressing, we are going to have a cesarian.” They are not like,”Here are your options….what is your decision and we need to do it now.” People are afraid of insurance, and if your baby dies. No care provider or mother or father wants that on their mind. I know people who have lost children, and the thought lingers, “We should have went to the hospital.”  And so that is the other side of it. Sometimes you just need a C-section. I am not advocating for it. But sometimes babies might have survived if they had gotten to the hospital, or moms may have survived if they got to the hospital sooner. And that is the reality. Especially as a woman of color, black women in NYC have the highest mortality rate, bottom line.  

I used to work in Haiti, in Rwanda and other counties. People would ask, “Where are you going to go after you become a midwife?” And I am like, “Brooklyn. And the Bronx if I can get a car.” They are surprised, like, “Oh, okay”. Then some cheery girl next to me is like, “I am going to go to Africa” and I am like, “Good for you.” I don’t need to get any more passport stamps. It is all right here. It just looks different.

So I think it is complex. I think there is this doula story: If you go to the hospital I have to protect my clients. That is not what they hired me for. I am not not going to fight with a doctor that is trying to get your baby out. That is not my job. My job is to provide you with some information so you can make decisions before we get into that space. And I will hold space for you to cry, grieve. I have to be thinking about what it is for people to overcome trauma in their lives, for those who have lost children and for those for whom this is the first time.

A woman I worked with, who said I could share this story, had had six miscarriages and the doctors said come to the hospital. She had already been told that she would never have this many miscarriages so already she is not sure what she can believe. But someone called and said, there is a chance you may have to come in your labs are high. She was in her last few weeks of pregnancy. And she was like, “I want the C-section because I am already the 1% no one told me about. This might be my only chance.”

People make their best decisions they can. Since being a doula in NYC I have created a mantra I say before I step into someone’s home: I will not judge what love looks like in this home. It is really easy to come in. I have clients from all over. I can’t say, “In Park Slope the mom’s are like this, and in Brownsville the moms are like this…” I don’t go into homes like that anymore. And even if on the bus ride back as I process, I leave myself open to that so I don’t create these stereotypes, you know what I mean?

So that is what a doula does in NYC.

ALEX FIALHO: When you say “Hold space”, how does that happen?

LODZ: I remember when I first heard my mentor say it. I was like, “This hippy.” I grew up in NYC and I was crazy Type A and now I am not. For me the phrase is really just about observing what is going on and sometimes I making a decision to touch a certain way because I know what you may need but you may not necessarily know how to articulate it. Sometimes it is hugging, massage, leaving the room so you and your partner can have time alone. Sometimes it is asking your partner to leave the room. I will say to the partner, “I need you to go on a walk right now, can you go get me water? or, “Can you just leave cause you are messing up the energy?”

And sometimes it is about me just getting out of the mom’s way. There are times when I am not in sync with the client, when I am the problem and I am in the way. And that is tough. It is crushing to the ego but also tough when you get your ass handed to you. Talk about being humble - when you are not in sync for the client, and you were holding space the wrong way. Not every client has referred me or ran a referral for me. That also happens.

I think holding space is also taking care of myself. When I take care of myself I don’t look at the emails, the referrals come. When you are taking care of yourself it is just easier, boom, everything is easy. When you are not, you feel tired and that you can’t be there. But I can’t call sick or go home. That does not exist in our world.

TAMARA: I actually have a personal question: Why the transition from doula to midwife? Why embark on that process?

LODZ: A bad experience. I saw a care provider treat a client like shit. And every time they left the room it was inappropriate for me to say what I was thinking. I just held my client. She just cried. Her husband was like, what can I do and then eventually he just yelled, “Don’t any of you come in this room and talk to my wife this way.” I saw several caregivers treat this couple like complete shit. And I was like, “Oh, okay, this is powerful.”  I should say, this family gave me permission to talk about their experience. They were really coerced into having an induction. The caregivers were like, “What is your due date? Well, we should just induce you.” The flip side of that is that in the American health system is, “How come your client didn’t say ‘No’?” And the answer is, well they did not feel like they could. My client said, “Well the doctor said we should.” And I was like, “How do you feel about that?”  Even the idea like, “Did you question them? is not something that really exists right now. But in that moment I provided non judgmental support. And that means that you go where your client goes. They were in the hospital for three days and they had a cesarean. They ended up writing a letter to the hospital. And that birth traumatized me. I took off after that birth. I was not sure I was ever going to do that work again because that was horrible. Then I had a community of support and they were like, “You got your ass handed and bad births do happen.” I was able to process, and I was like, “Oh, right, they were not all like that.”

I supported a lot of negative births or what I perceived to be very difficult and intense births and I was like I want to be the care provider that is at least nice. I don’t want to be a best friend. But really thinking back to the horrible experience I just want to say to the care providers, “Big deal people ask questions a lot.” A nurse came in and said to the parents, “You keep on asking the same question. Do you not understand it when the doctor says it or when I say it?” I spoke to the nurse and we got another nurse assigned but it did not get better. And this was like a great hospital. And, this couple is white, they were middle class. We think black women get treated badly and they do but that was not this situation. And people think that things are worse in City hospitals. Not always. I had a client who was 18 give birth. All the nurses and midwifes all supported her. “You are going to have a life after this” they said. It was like a village supporting her. I was like you can also have that birth experience at a City hospital. So it comes down to the provider. You know?

Martez

MARTEZ SMITH: I was captivated by that story. Thank you for sharing that. I will start by giving you some background about how I started doing HIV work . When I was 17 I discovered the ballroom community. I was dating a guy and he was telling me about his ex and how after they broke up he became really really thin and started voguing, and I was like, “What the hell is that?” Behold the powers of Google, and I found out what it was. I saw a video of it on You Tube. I fell in love with it. I think we all have these moments in our lives when you have this experiences in your life, these moments where you really connect with someone or you see something or something happens and you have either been there before or it really speaks to your spirit and you need to follow this. And that was what voguing in the ballroom scene was to me.

Me entering into the ballroom scene was my kind of initiation for lack of a better term into black gay culture. After I started attending balls I started going out to clubs and this was all in Columbus Ohio where I was born and raised and immersed myself in ball culture. And within a year of being in these spaces people started randomly disclosing their HIV status to me. Unsolicited, just in normal conversation, it would just be the two of us. It would come like a pile of bricks. Probably after the third or fourth time it happened I kind of thought to myself, “This is happening for a reason. Maybe the universe is speaking to me, telling me that I have to follow this and see where it is taking me.” It is exactly what I did.

Fast forward and I ended up finding myself spearheading a prevention effort in Columbus, Ohio where we actually went out into the nightclubs and we conducted testing and we did condom distribution and all that stuff. I got my ass handed to me a few times. Ohio is conservative for the most part. So you know there was a couple of times when I was standing outside of the club. I would hand out a condom package and I would get cussed out, "Oh we are not for that that. We are here to have fun.” And I am like well, “I just saw you grinding on that guy in there and I saw that you exchanged numbers you know. You are probably going to go home and have sex. Be safe.” I never said that to anyone but those were my thoughts.

So yeah, that was an introduction into this work and to HIV testing in general. I think the defining moment in my career as an HIV tester was the first HIV test I ever conducted by myself. This was in 2011. I was completing an internship at an AIDS service organization as a case management intern and they required all the case managers to be certified in HIV testing. I shadowed eight testers and read the manual and took the test, I did a dummy test, and I get phone call that I was to come in and conduct my first test and I am like, “Okay cool.” I came into the room, it was a young black guy. I saw myself in him. We were the same age and everything. I was asking him about his sexual history, I proceeded to go with the pre-counseling session and I administered the test. The results came back and they were negative, or so I thought. I had copied the sheet with the result on them and I was just about to hand in the results when my supervisor called me back into the lab and she pulled the test out of the trash can and she held a black light up to it and she was like, “See that little faint line there? That means it is positive. It is hard to see because you are new, but I wanted to make sure I was able to show you the correct procedure.”  

And excuse my French, but it fucked me up. I had to tell him he was HIV+ and golly that was…even to this day, I still do testing, I don’t do it as frequently as I used to because it is not a full time job for me anymore. But having to tell someone they are HIV+ — talk about trauma, I left early that day. Because originally I thought I had it together, thought I was handling, I got this. But then the counter transference kicked in. And damn, this is me. This is me. At the time I was HIV negative. But three months later I seroconverted and I was HIV+.

I ended up in NYC nine days later after that positive diagnosis. And I think that time to myself I was able to dig deep and really get real with myself. I had to face some things about myself, face a lot of things. like, what if I die? How am I going to tell my Mom? I was covered under her insurance.

Through-out the process, speaking to what you spoke about Ted, learning that you are HIV+ is a series of moments over a lifetime. I too when I was about seven or eight saw a BET special—like a World AIDS day presentation—and of course there was a straight guy who was really promiscuous, a black straight woman, and a really flamboyant effeminate gay guy. And I was like, “That is me, the third guy, the effeminate gay person.” I knew at a young age I was gay and based of what was being shown to me on TV I concluded in my mind that I would become HIV+. Delivering that first test result confirmed that.

So I guess that is the background. And then onto my experience with HIV testing here in NYC, I want to say it was June of 2013 that I started working at Bronx AIDS Services as an HIV testing counselor. They merged with Citywide Harm Reduction and now they are known as BOOM health, and I worked there for a good four months. I would go out to the Piers in the mobile unit and we would walk out to the Piers and and grab folks to come back and get tested. We would go to different cruising spots in the city, like 40th Street where the video booths are, and we would just test folks.

First thing about testing that I did not like was the fact that I felt that a lot of the funders—and this would be translated into the organizational structure—are focused on numbers. And this is not a conversation that any of us have not had before. You get a grant to do this job and make sure you give them identifiers and you get a full report. And I had a problem with that. I felt like I could not provide a level of care for these young men, women, whatever they were whether their tests came back neg or poz. To the people that were positive I had a lot of trouble actually linking them into care and that disturbed me.

TED: What does that mean? What was the trouble and what care?

MARTEZ: I had trouble with two things. Number one I had trouble with the notion, concept of having to commodify someone, making them a number, a form, I take an hour to complete because of the stupid boxes and making sure it is submitted on time, instead of me actually sitting down with this person and having a real conversation with them, getting to know them, which can take upwards of an hour, and really digging deep with this person to figure out why are they here, do they feel at “risk” and is there interest in reducing risk? I wanted to be having discussions together with people in that van. But I could not do that. Policy states that this test takes 20 minutes from the time you swab to the time you get in the solution, that should be enough time to complete the ERRS forms, and do very brief pre and post counseling.

The second thing I had an issue with was the few times that I did get poz results it was difficult to track people down and link them to services. It was often for one of two reasons, one they were scared shitless, or two they already knew they were positive or had an idea that they were and they already conjured up in their mind that they would give me fake information because the testing is incentivized. So if I can get a free Metro card to get into the city to do whatever I need to do to live, or a $5 Subway gift card to eat because I have not eaten in three days, and so yeah, I am going to make up fake information. These folks know the system very well.

So yeah, the fact that funders have reduced my life passion to 20 minutes of completing forms and asking very inappropriate questions, I had a huge problem with that and that is why I decided to leave. But even as a research assistant at Center for HIV Educational Studies & Training, we do testing. We don’t do testing for walk-ins but some of the studies we are funded to do have a testing component so that is when I experience the test.

ALEX: What are the inappropriate questions?

MARTEZ: It varies from person to person. There were some people who are extremely sex positive and they are open with their sexuality. We are all sexual beings, but there are those who walk in who are a little more conservative. So it was during those times I would run into the more conservative person, or more timid person who were maybe even sexually naive and did not have a lot of experience with sex and it was difficult to engage them in conversations around sexual risk reduction. How can I engage you in conversations about reducing your risk for HIV when you never have had sex, if you don’t understand what anal penetration is, and how that could either increase or decrease your risk for HIV? So that is what I mean.

TED: We can ask you more questions. But also, let’s also bring more voices in. Michael can you talk about testing from your various angles? I am super interested in the pastoral idea, or the chaplaincy approach, and your experience as well.

Michael, Iele

MICHAEL CRUMPLER: We can build off what Lodz was saying about what a doula is and how does it relate to chaplaincy. Chaplains function in health care facilities as that third space, I knew exactly what she was talking about when she said holding space. But we hold space in a much more traditional, orthodox way. Usually chaplains are encouraged by a particularity. There are Jewish chaplains, Catholic chaplains, Protestant chaplains, Muslim chaplains and even beyond those faith identities. They come to advocate for the patient, at times. Yes, they are part of the organizational structure of the hospital. So that would be a little different, correct me if I am wrong Lodz, but it sounds like you are hired by the patient to be there. Where as the chaplain is part of the health care system, accountable to that system, but also accountable to keeping that power structure accountable, you know?

A chaplain goes into a system and holds space for the humanity of the patient. So whether it is a mass casualty event like a car accident, a shooting or if life sustaining support is going to be removed, the chaplain comes holds emotion and spiritual experience. You are going to be out of the way of the nurses, but at the same time you are going to function as a certain ethic al and moral authority. Example:  if I am praying with a patient and a nurse or doctor, who think their role is more urgent than prayer, it is my job to say, “Can that wait? Can you get that blood pressure in 10 minutes when I am done with this conversation?” Or sometimes it is, “She is cold, and she has asked you three times for a blanket”. Or it could be standing in for the doctor when the patient is critical of the system. Sometimes I have to be like, ”Really, do you really think the nurses don’t like you and they like everyone else?”

And sometimes I am involved in palliative care - which is comforting the terminally ill and I think about differences between HIV/AIDS and cancer when it comes to death. Generally now, if someone dies of HIV/AIDS I know that something else is going on. Whereas if someone survives cancer, then we are surprised or they are viewed as strong or brave.

TAMARA: What do you mean?

MICHAEL: When I hear someone is dying of AIDS I am like, something broke down. My story kinda of testifies to this. I was married to a woman, I was denying my sexuality, I thought my sexuality was something I could deny, I was married and sleeping around where ever I could.

There was never enough energy to have sex with her, but enough energy with numerous other people. I became HIV + and when I seroconverted, I knew exactly what was happening. Two months later I got tested and I was positive. I dropped out of seminary, I got a divorce and I moved to Chicago and I told my family I am gay, I am getting a divorce and I am HIV+.  Bye.

LODZ: Ok.

MICHAEL: My doctor said, “This is not a death sentence. Just take this pill and you will live.” But there was no other care, or interventions. There was no where else to go, no therapist to talk to, or family, I was so busy coming out I was running from them, and I didn’t want to be stigmatized for being HIV+ and gay so I was not into hearing anything my family and friends had to say. A year later I ended up goofing around at a sex party and became addicted to crystal meth which lead me back home eventually: three jobs, three apartments, and two or three car crashes later. This is where self care came in through recovery, therapy, family support, counseling, hence where I am today.

As to how it related to today, to what would a HIV doula do, I believe my situation is typical. Most people have a fear of getting it, but it is not real until they get it. Then when you get it, you are busy trying to make it not a big deal. I remember thinking, “I can live a normal life, I’m just like everyone else.” Meanwhile you are fighting that you are alone. Most people in my experience resort to compulsive sex practices, not because they are sex positive rather because they are spiritually seperated .

TED: After diagnosis, or just generally?

MICHAEL: Generally, because sex is all you have. it was all I had. We see people having a lot of sex not because they are sex positive but because they are emotionally and spiritually hurting. People are getting high in clubs, and spending a lot of money because that is where we find our value and worth. As it relates to doula and HIV/ADS, I think there needs to be some kind of conduit between “I am Positive” or “I am involved in behavior that could cause me to become positive” and how to live a whole, fulfilling life. Like, “Who am I, how do I get there and what does this all mean?”

As for pastoral care, I don’t think people have to have a religious tradition. But I do believe that religious people are responsible for all people. I believe as a person of faith I am indebted to you all. I think there are a lot of amends—to borrow from that recovery word—that the faith community has to make to the homosexual community, and the gender queer community. The amends involve letting go of our judgements so that we can provide spiritual care and support.

TAMRA: I have a question about your work with folks that do not believe in God. How would you manage that space?

MICHAEL: That is an excellent question. I go back to Lodz, because so much of what she said translates. When I know what I believe I am able to come into a space and without forcing my agenda on you. I think pastoral care is about diagnosing feelings and helping people know what they are feeling and what is behind those feelings and not necessarily ascribing to a belief as a solution. I think that in the United States religion has become a form of salvation. Really it is just helping people understand how to be saved from a particular feeling, situation or lie that they are telling themselves or that they are being told. We use the collar to give people space, to be, and to say “No” to those ies. Does that help?

TAMARA: Yeah.

LODZ: I was going to make a joke… before you asked the question I was going to say Become a Unitarian. I am a Unitarian so… we love everyone and everything.

IELE PALOUMPIS: As a death doula though, part of the work I do, aside from the compassionate care piece, is to sometimes stand-in for chaplains when families carry stigma around religion and are resistant to speaking with a chaplain, because of the amends that need to be made by religious communities as Michael put it. There are also people who identify as atheists or don’t have a connection to spiritually. And sometimes people who do have a spiritual practice or religion will start to question it, or lose faith during times of immense loss.

One thing you don’t want to say to someone who is grieving is something along the lines of “Oh but your loved one is going off to a better place.” Even if the patient and family believe that, it can still be harmful, because emotionally it just might not be where they are at. It can often feel minimizing to their pain.

Of course things can always go the other way and someone who has been an atheist their whole life is now really having this spiritual experience within the death and dying process. So, many end-of-life doulas can hold a spiritual space as well for those sorts of things to come up.

MICHAEL: And I thank you for saying that because part of pastoral care is about providing resources. So I am able to say, “I am not an atheist but I respect the fact that you are. Let me get you someone who is.” And to be able to provide—and again I am assuming a death doula is someone who is hired.

iele

IELE: I am actually working in a volunteer program. There is a place called Valley Home Care and Hospice in New Jersey. They have been doing the work for the last eight years now. The end-of-life doula movement is very young. It has only been happening for the last decade or so. There are some people that know about us, and there are people who do it for hire. For me the volunteer work is something—because I am new on this path —that I am gaining experience with. I don’t yet know how it will inform my life. It might be something I go into for hire eventually.

MICHAEL: But even just knowing that, knowing that there is this organization.

IELE: In NYC there are volunteer programs as well. There’s the Doula Program to Accompany and Comfort, and Mount Sinai also has a team of end-of-life doulas. Both of those programs focus on companion work. Often patients will not have family or loved ones who are coming to visit them at the end of life, so doulas can fulfill a need for companionship.

Valley Hospice is doing vigil work. When death is imminent we are holding 24 hour vigil. We are sitting there, holding space, observing the patient and family, and responding to their needs. When the patient starts to rapidly decline and death feels closer, loved ones often feel fearful of leaving the patient’s side. They are afraid they are going to miss it. Most deaths do happen overnight and families will not sleep, they will be exhausted and unable to give what they want to be giving. So a doula can offer respite, and call the family in when it is time. There are physical signs we are trained to know, usually you can actually know within the last days and hours of life. If the doula sees these physical signs and there is family that needs to be called in, we can be like, “Okay it is time to be here.”

PATO HEBERT: Ted, since you helped conjure the question, do you have thoughts about what might an HIV doula might be? Is it about holding space? Or your notion that I could text someone if I just tested poz and getting linkage or accesses to resources? I am not racing towards a definition, just trying to massage what lead to your question.

TED: Well, yeah My question was smaller than what the room is providing. I will say that. The most obvious thing I am thinking about is what we understand now is that most often HIV is transmitted when someone is newly poz and they don’t know that they are positive, or maybe they do know on some level but can’t fully reconcile the fact. This is where I see having a doula project could be helpful, to have a known culture of HIV acceptance not based in bureaucracy. Can you imagine if you had a reliable person to speak with about having HIV with no fear of being criminalized, or medicalized right away? What would that buffer look like? I guess a question we can ask is, what would the role of a HIV Doula be in making the transition to knowing you are living with HIV? This, I think brings together the physical, the practical and the spiritual.  

So, what would an HIV doula do? Lodz you set us up so powerfully. Holding space I think can mean many different things. Martez, you helped us see all the things that you do is what currently does not get done. Those people who are in the van with you for 20 minutes, they got something from you. That is a beautiful 20 minutes I am sure. But what you are saying is that it is not enough—and you are right. And you are saying that you want something juicy in there somehow. You need more time, and more space and it can’t happen in one moment or one sitting. 

LODZ: In thinking about this question, because at first my mind was so rigid, I was like what can I think of but really if I can think of it that means it is not that crazy. It is not like I am coming up with a cure. The one thing I can say is that social services got how to compartmentalize this disease. There are many HIV programs if you are homeless, have a mental issue. You have to check a box and then we help you get an apartment and a job. Those two things.

We don’t take care of anything else. So if there is a box that can be checked there is a program out there. When we talk about the whole person there is not a program for that. And I think that is what doula and pastoral care do. It is all out of the box. It means we can deal with the fact that you may be a hoarder and you have HIV, and that is okay.

I feel like the HIV doula does not have this great job description. Basically it is going to be “additional duties as needed” So you need someone working in the grey. And it may not be comfortable. I might go to your house and I am realizing, “Oh you don’t take your medication at all, but I am not trained to deal with that.” So I am going to hold space, have that conversation with you and then help you build some community around your issues.  

But I am not a case manager, because you have a case manager so I think it is all the grey areas. There is a lot to unpack. Even in recovery you don’t want people talking to you. It’s like back off me.

PATO: That seems key. Clients find their way to you, right?

LODZ: That is right, as a doula I interview and I always say it is a two way interview.

PATO: So if we are talking about people experiencing stigma who may be conflicted about knowing, the doula has to find them.

MICHAEL: I love that you brought up the sponsor thing and I didn’t have to. The difference I think is recovery offers an ongoing experience for people to be supported through meetings. People continue to be supported even when they are resistant. It becomes easier after six weeks, nine weeks, six months because you are in a community. When you become HIV+ it is invisible and silence because of the stigma attached to it.  Community allows others who went through what you are going through to be involved in a network of care.

IELE: In the home hospice settings I am working out of, patients are not seeking me out in that way, I get assigned to patients through the infrastructure of the hospice. Each patient and family have a social worker, a home health aid, doctors and nurses, so there is this community of people working with the families. Death is not something people are looking forward to. It is not like a birth: people don’t want to seek us out. What the community infrastructure at Valley Hospice does is allow multiple openings for a doula to be welcomed in. A nurse or social worker might say “We have doulas available to you who can help you create an end-of-life plan, do legacy work, or hold vigil in the final days” and all they have to do is say the word and we’ll be there. In an ideal scenario we will have time, from terminal diagnosis throughout the dying process and death itself, to help the patient come up with an end-of-life plan and offer support along the way. That is the ideal process. What more often happens—because patients and families are resistant—is that the community has to remind them this service is available. As a result, the doulas come in at the last minute, when death is imminent and the family realizes they really need the extra support.

One last thing: My mentor says to me, our ideal as death doulas is to work ourselves out of business. She says, "If I work with a family I don’t want them to feel like they have to use me again, because they will have the resources and they will know what they need to do.” So it is about helping people to feel more empowered as communities to do this work.

TAMARA: Should I jump in?

TED: Yup.

Alex, Tamara, Sur, Michael

TAMARA: Ted tasked me with addressing what is the role of the community; I guess that is the general rubric of what we have been discussing. Questions that pop up out include: What do we mean by community? What do we mean by healthy? And in keeping us healthy, what does to keep mean versus to have health—or maintain or acquire health?

I tried to digest Ted’s request. Specially, to what is community? Going back to the HIV doula question, who is the community the HIV doula would be responsible for? Who are the stakeholders? Who is the participant? And who is paying for it?

What has happened within the AIDS movement is that it has also become AIDS, Inc. It has become about grant processes, where you have specific indicators (decided by the funders), and people you have to reach and target audiences, and timelines, and what not. How would you make an HIV Doula that is truly holistic so that it is not dependent on the funder? And is able to meet the community, or the audience, wholly, collectively, responsibly?  And part of that is for me—and I will be really honest, and Lodz talked about it just now—comes from the public health perspective.

So for me as a public health educator, health is about poverty. That is the number one threat to public health. So we can’t talk about HIV/AIDS if we are not talking about poverty and how it impacts all of us in particular communities because of all the “isms” and privilege. So yeah, let’s talk about an HIV Doula and what this would look like, but in order to be truly successful, we need to be able to look at the structural issues that oppress us, and make us unhealthy and poor. Those are the macro things that have been coming at me as I have been trying to address what is the role in keeping people healthy.

And I do want to do a quick shout out. I work at The New School currently and I am working with two students and I have learned a lot about the Doula movement through them. One is Jasmine Cuffie; she is a reproductive doula. She sits with folks as they go through abortions and advocates for reproductive justice. And Myl Sanchez, who is, in the process of proposing a doula type program for students who are transitioning in terms of gender. For both Jasmine and Myl questions that arise are “What does a doula look like in a university setting? How do we best support students during their time at the university? How could a doula-type program work in Student Health Services?” Considerations include resources and linkages post–graduation. I learned a lot from them because of how community has been defined and conceptualized while they have been students.

Before coming to The New School I worked in syringe exchange programs. I was at Housing Works, Director of the Harm Reduction Place. I also did advocacy work with terri smith-caronia and I remember having deep conversations with Housing Works leadership about the syringe exchange program. Their syringe exchange program is a closed waiver, meaning it is only open to people that are part of the Housing Works community, which means by definition it is only open to people living with HIV, or their family members. I advocated for an open waiver because there are people coming through the doors who are at risk. By having a closed waiver you are limiting the ability to do public health.

Part of the push back I got—and I respected it, and that was part of the healthy dialogue that was happening agency wide—was the need to provide services for people who are HIV+ or living with AIDS because they have unique needs. By having a closed waiver we are able to have a closed community with targeted services, including support groups.

As Director of Harm Reduction Programs I was faced with a changing demographic; our numbers in syringe exchange were really low. The harm reduction model with an active syringe exchange was not a critical need, but harm reduction related to crack smoking and pill using were on the rise. And the dominant language was abstinence. Participants feeling triggered by people who were using needles.

So, what does community look like, right? How do you negotiate a potential public educator, administrator, HIV/AIDS counselor tester? How do you negotiate spaces where people have different needs and even different ideas of what ‘safe’ means? How does drug use change over time? And how does funding keep up with the changing needs?

PATO: In some ways it echoes prevention tensions that have always existed. In some ways your question around what people are most transmissible is about that important juncture around prevention and treatment. It made me wonder, and Martez if this is too direct please don’t feel pressure to answer: From that moment when you were learning how to serve your community and that whole navigating of your own diagnosis, I am wondering what might an HIV Doula have felt like / been / done? Could it have been the person in the mirror? How would you have found him / her? What would they have done?

MARTEZ: That is very interesting to be asked this question almost three years later. If I was an HIV doula and I was called on in that situation to tell someone, and they give a positive result to someone, and they identified with, I would start with number one: How do you feel? Can you tell me why you feel that way? And I would have to give them a stern reminder that all though you do relate to this person, their story is not your story. And I think often times, speaking to what Michael was saying about when he was nine and he heard about HIV and you saw what AIDS looked like, those are not our stories for us to internalize. And I think that is a dialogue we don’t have anymore. We are tricked into believing how society would like us to see us.

LODZ: Is there anything you would do as a doula? Like maybe when you got your results? Was there anything you wish someone had done in your first three months, six months? year?

MARTEZ: Remind me that I wouldn’t die. I am also epileptic. Later on when I get up there in age, there could possibly be implications for neurological stuff going on. And that when I first found out I was positive I was like, “Oh shit, what have I done?! What they hell is life going to look like 20, 30 years down the road?”

But I mean, what I would have done for myself or if I was a different person talking to myself, I would have told myself, “Calm down. It is going to be okay. Don’t cloud your mind.” As someone living with HIV I do this a lot, I will try to imagine what life is like 20 30 years from now? What complications will I be living with? Will I have some rare kind of cancer or something like that? There are questions that go on inside my head but don’t have the spaces to explore them with other people, so as a doula I would number one remind myself that I am not going to die. Number two I would have those conversations that a newly diagnosed person may not feel comfortable having with other people like an MD or social worker, or their best friend who is also poz because they “share the same experience.” I would have those conversations.

Pato, Martez

PATO: I keep thinking about the doulas here and your wisdom about touch. What kinds of touch would be present?

LODZ: I think touch can be condescending. That is the first thing I thought of. I would really need to observe.

KATHERINE (kat) CHEAIRS: As opposed to listening?

LODZ: I would observe how you feel. The one thing I have found, my family is not from this country, so the idea of personal space is confusing to me. When I am being snarky I am like, “yYu are American, you want personal space get away from me.”

But the idea of personal space is how I work it. Like if you were comfortable then I will be in your space. But if you are not and I am feeling that I am going to give you space but let you know that I am right here. So I will use the chair, and sometimes the position in the testing room is not very personal, so I would intentionally change the chair to ensure there was nothing between us.

So moving things, and depending on how you leave, I might even ask the person if there is hesitation to leave the room: “Do you want to be grounded before you leave the room? Do you feel like you can leave this van right now? I understand if you can’t.”

IELE: That is huge. For us, if we are able to get in sooner than later we can have a Vigil Plan (a written document the doula works with the patient to create) which addresses questions like: Are you open to touch? Which loved ones do you want to sit bedside? Are they open to touch? And so on. With a patient who has gone to an unconscious state and is unresponsive to touch—that is where a Vigil Plan is important. But so is being present and observant. We try to remember that things change. So I may want to be touched today and not tomorrow.

MICHAEL: So what I think about a lot is unconscious competence, I think we all have knowledge we don’t realize we have. I think what happens with trauma is it causes you to forget what you know.

MARTEZ: Yes.

LODZ: That is true.

MICHAEL: By the time I became HIV+ I had gone to college, I had a degree, I had already done pastoral care, I had already served four years in active duty in the military, I had already traveled internationally, but trauma made me forget what I knew, I lost my internal compass. What would have been nice is for someone to have reminded me that I wasn’t insane, that becoming positive does not make you stupid. You know what to do. It’s like if there is a fire all of a sudden you forget how to call 911. I think what a lot of people do is forget what they know. I think a doula reminds you of what you know. So while HIV is not the totality of what you are, however it does alter you a bit from inside: So a question is:  How do I adapt what I know to this situation?

In terms of chaplaincy, an effective chaplain has had some level of clinical training. You know how to be. A network of doulas would need a clinical curriculum that consists of what we are talking about: when to touch, when not to touch, when to look, when not to look, when to leave, when not to leave. All of these things could be covered, you know, when to do what and what to say and when to say it. How one is being, is a form of communication.  

TAMARA: The more i think about the HIV Doula concept I am thinking of two different contexts. One: What would a doula look like in existing AIDS Inc. organization, like Housing Works / Callen-Lourde/ Hetrick-Martin? Because I think what is missing in this type of organization is the position that is holistic in nature that can advocate and hold space. In what spaces could there be a doula?

MARTEZ: Thank you for asking that question. My partner also is a tester and just this past Monday they got a positive test. They go to Vogue Nights on Monday and they do testing and there was a positive test and there was no protocol on how to handle a positive test for mobile testing.

ALL: WHAT?

MARTEZ: It is ridiculous. Even when I worked at BOOM HEALTH we had a protocol.

TED: But like Michael said, you can forget.

MARTEZ: Right, so here it is: ENTER DOULA HERE.

PATO: And was there a second context Tamara?

TAMARA: Oh, it had to do with testing. So much testing happens not in AIDS, Inc. but in local clinics, like through student health services. Could there be a mobile health doula that gets texts and mobilizes to agencies and agencies. Those where the two models.

LODZ: As the doula, I was thinking, that person is always on call, so I just attended my last birth before I start school. So I turned my phone off yesterday and I was like, I AM SLEEPING.

TAMARA: I think these models are a little bit different to what you were describing Lodz because you have developed a relationship as you entered into the agreement. But this is more like an on call…

LODZ: A rapid response.

TAMARA: A rapid response vs. a developed relationship.

PATO: Not knowing / diagnosed, because with death or birth there seems to be this event that seems to mark the doula relationship wind down. But with HIV would we  need a doula before someone even goes to testing? Or is a doula only instigated after a negative or positive test result?

KAT: I was thinking about a student of mine in Atlanta and I don’t even think he knew I was working on an HIV related project. I was just a prof he talked to a lot. He came down the hallway and he was like, “Oh I need to talk to you,” and he showed me his blood work from maybe two or three days before. He didn’t know that I knew how to read that paperwork or even that I had been working on Ending Silence for three years. So that was one of those moments where I was like, “Did I do all this work so I can be present for him in this moment?” He didn’t understand what the CD4 count was, he didn’t understand the viral load—and they were not great. The look of fear in his face was intense. He thought he was going to die. Even with all that we know, and all that is available this look of “Is someone going to love me, am I going to be able to …?” is what I could see on his face with the fear he was holding. So I said, “Okay let’s talk about this.” For about an hour I told him he was not going to die. But I also did some other things. He had to come to me two years before, saying that he had herpes, so now he has a co-infection, and he got really bad advice on the herpes. So I said, “You know I love you. You are like my son, little brother so I need you to follow these things.” I knew how to link him to care, because of all the work I had been doing, I knew who to call, I knew who was going to hold him accountable. I let him know that all the tiptoeing that he did before around his health was not going to work again. I said to him, “You have to take care of yourself. You are going to have to eat differently. All those blue sodas you drinking? Stop. You are going to have to advocate for yourself. If you are given a medication that makes you sick you have to speak up. You can’t sit back on this.”

Because he is also a young man of color in his 20s who has been unaccustomed to standing up for himself in some situations. So I just linked him to care. It was an hour of just sitting there and being present and not having all the answers, and linking him. And I held him accountable. The next times I saw him I asked, “Did you talk to so and so? What happened when you went to the doctor?”

MARTEZ: Follow up.

KAT: Yeah. I think because I was able to be present, to be one of the first people he disclosed to, it helped him make a healthy transition so that three months later he was openly discussing in class the fact that he was living with HIV.

So I guess what I want to say, is that listening here I am hearing what people are doing around the table and I feel like we are all doulas and we are connected thought this story, this narrative of HIV that is through the line. But I feel like we come into the healing space at birth and somehow it gets mixed up. But this kind of space is the healing space. This is what should happen.

Transcripts and photos: THEODORE (ted) KERR

Editing: LODZ JOSEPH, MICHAEL CRUMPLER, PATO HEBERT, ALEX FIALHO, MARTEZ SMITH, IELE PALOUMPIS, TAMARA OYOLA-SANTIAGO, KATHERINE (kat) CHEAIRS

This roundtable was supported by the Department of Art & Public Policy, Tisch School of the Arts, New York University.