What does a project about death, care work, and feelings have to do with the Green New Deal? A conversation between Erin Segal, publisher at Thick Press, and Rachel Kauder Nalebuff, author of the forthcoming Stages: On dying, working, and feeling. (Thick Press is a collaboration between Erin, a social worker, and Julie Cho, a graphic designer. Rachel Kauder Nalebuff is a writer who works in oral history and performance.)
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ERIN: You started making art with senior citizens and nursing home staff in 2017; about a year later, Julie Cho and I began to help you turn your interviews, performance artifacts, and writing into a book. All three of us have been propelled by a shared conviction about the importance of care work. But we’ve been so consumed by the careful work of making this poetic book-object that we haven’t talked much about how Stages might be useful during this particular historical moment, when folks on the Left are working to include care work, education, and the arts in their visions of a green economy. But first, a description of your project is in order.
RACHEL: Stages consists of documentary materials I assembled while staging theater productions in a nursing home, first with residents and then with staff. The book unfolds through a series of interviews with end of life care workers — from housekeepers originally from Jamaica and Ghana about ghosts and family structure; to a clinical nutritionist, who explains how she helps people at the ends of their lives stop eating food. Interspersed throughout are passages and images that reflect my experience as a 20-something, processing the effects of living in a society that is segregated by age and illness.
I was inspired by the work of artist Mierle Laderman Ukeles and oral historian Svetlana Alexeivich to chronicle the staggering physical and emotional labor involved in caring for the dying, most of which is undocumented and unseen. The curtain was really pulled back for me to examine our broken healthcare and elder-care systems.
Now that you’ve finished the project, I know you’re starting to think about some of the policy implications of what you learned. Even though you didn’t set out to do something “green,” the Green New Deal keeps coming up in our conversations. Can you explain how care work and the Green New Deal are connected?
The Green New Deal reorients our economy around caring for the planet and each other. Jobs that aren’t based in extraction, such as healthcare work, would be prioritized. It also calls for a complete re-envisioning of healthcare, which insists that housing, nutritious food, clean air and water, and fair working conditions for care-workers are a part of health justice. (I recommend A Planet to Win, just out from Verso, to learn more!)
Talking with nursing home workers and administrators, as research for our play, I learned the specifics of what this would mean. Beyond better financial compensation, we have to provide time and resources for healthcare workers to process relentless loss. In our show, we created circular formations for the group to physically hold each other up and to breath through their emotions. This evokes the more basic day-to-day issue, the need for more staff, so that people can take the time they need. We also have to expand our understanding of who is a healthcare worker. A sensitive housekeeper might be doing as much as a doctor to keep a nursing home resident motivated enough to wake up every day. Why is there such a discrepancy in who we view as skilled and valuable, which is reflected in salary and prestige. How can that housekeeper, who works full-time, not have savings for retirement? Or that someone who works as a full-time caretaker at home not get paid at all? Where are the statues to home caregivers? Our show and now, Stages, is a cultural monument to this work.
People who work in healthcare have a hard time believing that anything will change. I get it. Working conditions keep getting worse. This is why it’s thrilling and, perhaps unbelievable for some, when you read Bernie Sanders’ new disability plan and see that it includes a call for millions of more home-health workers, compensation for the 43 million unpaid home caregivers, set-wages, hours, and benefits (like vacation and sick leave) for direct care workers, and guaranteed healthcare for everyone. And this isn’t just a conversation amongst activists! These ideas are getting national airtime.
I shared the plan with my aunt, who is an unpaid caretaker for my disabled cousin, and she said, “This is amazing. If only half of it would come to pass. Without having to fight like I have.”
I’m a writer, not a policy-maker, but I know that the first step in our healthcare overhaul is agreeing that this is where we need to go.
It’s difficult for people to have conversations that might lead to policy change when people can’t quite imagine what care workers do. I also think that many people assume that care work itself (and not the circumstances surrounding it) leads to burn-out. It’s hard to envision care work as a cornerstone of a Green New Deal when one’s concept of care work is so thin. Can you talk about how your project has fleshed out your understanding of care work?
I’m so glad you phrased it that way. Most people I interviewed said that the work of elder-care was meaningful, but despite the conditions. I’m going to turn to people’s words from our performance directly to describe the work itself:
Rosa (Housekeeper):
I’m a housekeeper, but I notice what people need.
I take people’s shoes off. I turn the temperature up.
There’s this woman who lives here who doesn’t get a lot of visitors. So I brought her a plant. This purple plant. Now she calls it her baby.
Jennifer (Nutritionist):
We keep an eye on residents as they eat.
You might notice someone coughing a lot. With dementia, a lot of patients will spit food out. So then you have to decide, is it behavioral, or is it actually a clinical condition.
A lot of the time, the CNAs [Certified Nursing Assistants] will come in and say, I was feeding so-and-so and it took 5 minutes for her to swallow. And then we’ll determine if it’s time for a downgrade [an adjustment to a more easily digestible diet].
A lot of it is about pain management and comfort. Is their mouth dry? We’ll get them a mouth swab. Are they listening to music they like?
Keresha (Cafeteria Cashier):
You are not here just to put a hard-boiled egg and toast on someone’s plate.
It’s not about picking up a plate.
It’s about saying something as you place it.
It’s about reminding them that they have choices.
The loss of control is one of the biggest hurdles we come across.
It takes a lot to stand on the edge and be yourself.
The wind is literally against your back. And to be yourself now? And not afraid?
I try to remind people that they are not what is going to kill them.
They are not diabetes, cancer, even their old age.
John (Engineer):
I’m an engineer.
But I’m also half social worker, half nurse, half everything.
I start on the 7th floor and go down in a spiral working my way down to 1.
I ask everyone along the way if they need anything fixed. The sinks are leaking, a bed is broken, a light is blinking. As I’m doing my job, I’m messing with residents at the same time.
[Laughs]
When I miss one of my good mornings, that’s the hardest thing.
Often I’m the one breaking the news to the next person down the hall.
Even from these excerpts of conversations, you can see that emotional intelligence and commitment are a huge part of the job. It can make all the difference between a patient who feels hopeless and angry versus someone who feels cared for. And yet, institutions and policy are far from acknowledging, supporting and remunerating this kind of labor. Passionate and talented care workers burn out because, in a system where time = money, people are penalized whenever they go “beyond” their job description, for example spending extra time in a room to hold someone’s hand or taking a moment to grieve. There is no support for people to show up fully to the work that is actually required for care. I talked to some visionary administrators at the nursing home who are advocating for more time for staff to process feelings, but it’s an uphill battle, and has to be bigger than one institution.
In one of my favorite passages, you fantasize about creating a national ceremony for nursing home workers. At the end of the ceremony, everybody would get good insurance and tuition rebates. (You then deadpan, “I think I might be working in the wrong medium.”) Yet in your conversations with nursing home staff, topics like benefits, compensation, and unionization didn’t really come up. How do you explain this?
This is an important and sticky question! I struggled to talk about compensation because the project was originally commissioned by a nursing home through a staff resilience initiative. It’s amazing that this exists. But the play I was hired to write was meant to be a celebration of resilience, not a critique of the institution. So I went into the project looking for ways to honor people. At the same time, I wanted to establish trust with nursing home workers who didn’t know me. I did this by promising everyone they could edit their own transcribed interviews so they could have agency in the process of making a play together. Most people cut sections that mentioned anything negative. I didn’t want to put anyone’s job at risk. But you can still catch hints of critique when people say things like, “It’s not about the money. There is not enough money that could pay for this kind of work,” or, “A real thank you from a supervisor goes a long way. People don’t want a party once a year. That’s not thanking them for the work they did today.”
I describe my critique and vision for valuing care workers in the book in my own writing, as opposed to the interviews. Of course my vision, as a performance maker, involves a ritualistic ceremony. I’m curious what you picture — specifically as a social worker and a publisher — in a future that values care work?
In a future that values care work — including self-care and caring for family members — I imagine that it will be easier to find part-time care work. I feel so lucky that I’m able to work with senior citizens just one day per week, and focus on publishing and raising my kids the rest of the work week. I’m not sure about all the specific policy changes that will need to occur for this to become less unusual (I have mixed feelings about universal basic income). I do know, however, that if health insurance and other benefits are not tied to employment, then workers will have more flexibility and leverage.
To return to your project, it feels very clear to me that the capitalist fantasy of infinite progress has a connection to — and perhaps even originates in — non-acceptance of death. If more people confronted death directly, like you do in your work, do you think we might see some kind of shift in our economic system?
Our values would change. Spending time with people at the end of their lives is clarifying on what really matters, at the end of the day. Not a single person I’ve worked with — either through the nursing home or senior centers — defines themselves by their job. What matters is your sense of presence, your humor, your patience, your ability to give someone a meaningful compliment, your concern for those around you. And if this is what matters, what are we doing! Capitalism might end.
And if — when! — that happens, what will people’s lives look like? The passages in Stages about your daily life produce the sense that if only you could count on some regular income like WPA artists received in the 1930s, you would be living the urban good life. You teach, you swim at a public pool, you take the train, you work at the nursing home. But it all has a different quality than the daily life described by proponents of a Green New Deal. I think it’s because, despite your privilege, you are feeling so many feelings, and feeling those feelings so deeply. What are your thoughts about this?
Do you mean why do I still feel anxiety and pain?
Well, anxiety isn’t really a feeling; it’s what happens when you run away from feelings. I guess I just want to hear you articulate what you show in Stages about how beautiful it is to live an emotionally engaged life. I think people on the Left sometimes lose sight of this, in their zeal to eradicate human suffering.
I am reminded that you are a social worker not just a publisher! Yes! in a future with a Green New Deal, I think we might even feel more sorrow, or at least feel it more deeply. It just won’t be from structural oppression or financial precarity or climate crisis induced trauma. But we’ll feel heartbreak and disappointment, because as one nursing home administrator said to me, inspired by David Whyte, heartbreak is the other side of holding something dear. And in a world with the GND, we’ll be able to have more hopes. And the more liberated we are and the more time and emotional support we have, the more we’ll actually be able to feel the sorrows we carry.
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Image Credits:
Performance still from A Knock on the Door. Performers clockwise from the center: Edna Adams, Mojdeh Rutigliano, Joy Solomon, Jennifer Flood-Sukhdeo, Melody Brown, Nicholas Smith, George Eley, Glendalee Olivera, Keresha Morrison, Agnes Johnson.
Performance still from A Knock on the Door. Performers left to right: Keresha Morrison, George Eley.
Performance still from A Knock on the Door. Performers left to right: Mojdeh Rutigliano, Glendalee Olivera, Edna Adams, Jennifer Flood-Sukhdeo, Nicholas Smith.
All stills of videography © Jenny Schweitzer from A Knock on the Door, created by Rachel Kauder Nalebuff in collaboration with the staff of the Hebrew Home at Riverdale.
A Knock on the Door was commissioned by the Hebrew Home at Riverdale in partnership with Reimagine End of Life 2018.
