by Eleanor J. Bader

After Loss, a Devotion to Those Afflicted by AIDS

Not long after nurse and public health activist Elena Schwolsky’s husband, Clarence Fitch, died of AIDS in 1990, she left her job at a Newark, New Jersey, pediatric AIDS clinic, enrolled in graduate school, and went to Cuba to study the island’s AIDS treatment protocols and meet people living with the virus. The result of her six-month stay is the recently released Waking in Havana: A Memoir of AIDS and Healing in Cuba (She Writes Press).

Both deeply personal and deeply political, the book is a reflection on the challenges of living with HIV/AIDS and what it means to deliver humane medical care. The impact of the US embargo on Cuba and the collapse of the Soviet Union are part of the story, but Schwolsky’s focus never wavers from the individuals who are working to eradicate the disease. Likewise, people living with the virus are front-and-center in her moving, and often surprising, account.

Schwolsky sat down with Eleanor J. Bader in mid-December to discuss Waking in Havana, her ongoing AIDS work in Cuba, and the pervasive and persistent misconceptions about the island that continue to be promulgated.

Eleanor J. Bader: After working in a pediatric AIDS clinic and losing your husband to the virus, what made you want to do a deep dive into Cuba’s AIDS crisis?  

Elena Schwolsky: I did ask myself if I really wanted to put myself in a Cuban sanitorium, where every resident had the virus and would likely get sicker and sicker. But Clarence had been on the frontlines and it somehow felt comforting to share in this work. It seemed like an important battle. I also think that I had survivor’s guilt.  The universe had given me a pass and I felt committed to using my life in a way that had meaning.  It gave me an identity, and the camaraderie in the AIDS service community had an urgency that bound us together. Plus, I was curious and wanted to see how the epidemic was handled in a different place.

EJB: I remember reading stories in the US press about Cuba’s policy of segregating people with AIDS from the rest of the population. Did you know what the AIDS sanitorium would be like when you arrived in Havana? 

ES: I had first seen an AIDS sanitorium when I visited Cuba in 1991. I was expecting a locked-down institution, so right away it was obvious that I had a misimpression. Even though there was a security gate and residents had to get approval to leave, people lived well, ate well, and got excellent, comprehensive medical care at no cost to them.

Still, when I went back in 1996 for a six-month stay, I had mixed feelings. On one hand, I had loved Cuba since my first visit to the island in 1972. Yet, here in the US I was in the thick of working on AIDS and had just lost my husband to the virus. I had to ask myself how Cuba could justify separating families and taking people from their communities. But I also knew that I had to be as open as possible, absorb what I could, and really listen when I talked to people. 

EJB: How easy was it for you to make contact with medical folks in Havana to arrange your stay?

ES: After my first visit to the sanitorium in 1991, I returned to my job in Newark. The program I worked in had organized an international pediatric AIDS training and we were able to bring in doctors and nurses from Cuba. Thanks to these relationships, I started to develop a deeper understanding of AIDS care in Cuba and had the connections to arrange my stay.

EJB: Did your thinking about the sanatoriums change over time?

ES:  Yes. I came to realize that the government wanted to prevent a widespread epidemic and opted to use its limited resources to care for those who were sick and limit the possible spread of the infection. This was logical from a public health perspective. 

The other realization I came to involved cultural differences. Cuba is a socialist country and people really value collective well-being over personal comfort. It’s a real thing. People act for the good of the whole, even if it’s not what they personally want. As I began to understand this, I realized that I could not judge Cuban health policy through the same lens that I judged US healthcare delivery.

That said, as people opened up and told me their stories, I heard about their hardships and began to understand that even though the separation policy was not meant to be punitive, it had caused hardship and disrupted people’s lives.  I then understood why the policy needed to change and become less restrictive, something that happened over time. 

There are currently three sanatoriums on the island. A three-month stay in a sanitorium is recommended for people who are newly-diagnosed, but people are free to live in whatever community they want, and get treatment, medication, and nutritious food to keep them comfortable in their homes. It’s also important to note that some people have lived in the sanatoriums since they opened more than 30 years ago; they like them.

EJB: How prevalent is HIV/AIDS in Cuba today?

ES: The initial AIDS cases in Cuba were mostly heterosexual and were brought into the country by men who had been sent to Angola to fight. The present-day epidemic is mostly driven by men who have sex with men.  

Cuba has done a lot of public education about viral transmission and the rate of new diagnoses is one of the lowest in the world, with about 1700 new cases a year. Condoms are now produced in Cuba and distributed freely, but they are often in short supply.

EJB: Are kids taught about HIV prevention at an early age?

ES:  Absolutely. They may start teaching this even earlier, but I know that by middle school, kids learn about condom use and safer sex practices. Adolescents speak freely about sex; there’s no tittering when the subject comes up and hands don’t go up to cover giggling mouths! 

EJB: How about LGBTQ relationships?

ES: Mariela Castro, director of the Cuban National Center for Sex Education in Havana, has waged a campaign that is as effective as a campaign can be. I can’t say that Cuba has eradicated homophobia, but the country has removed restrictive laws—at one time gay men and lesbians would not teach or join the Communist Party. The country now has strong anti-discrimination protections, and people live openly. There are also lots of gay bars, clubs, and gathering places.

At the same time, there is a rightwing Evangelical Christian movement in Cuba that is pushing hard to reverse this.  Unfortunately, they’ve had some effect. For example, the government tried to put an amendment into the new constitution to sanction same-sex marriage, but they pulled this back because they feared that if they didn’t, the entire constitution would be defeated.

And this past May, I went to Cuba with the Rainbow World Foundation, a group out of California. Cleve Jones, one of the initiators of the AIDS Quilt and a longtime queer activist, had been invited by Mariela Castro to be the LQBTQ parade’s grand marshal. At the last minute, the parade was canceled because evangelical forces threatened to attack it. Cleve thought this was a huge mistake—and expressed his views to our hosts. A few hundred people marched anyway. Sadly, despite a weeklong celebration of Pride, with seminars and exhibitions of the AIDS Quilt panels and an outdoor celebration that drew a diverse crowd of thousands, the international press focused only on the cancellation. 

EJB: How are people with HIV/AIDS treated in Cuba today?

ES: Right now, Cuba is struggling to keep the sanatoriums up and running. They are draining resources that Cuba is hard-pressed to find; the buildings are fairly deteriorated. 

The country currently produces five AIDS drugs but the US blockade/embargo is a huge hindrance. Cuba can’t produce the newest generation of anti-retroviral drugs because they are under US patent. Cuba buys some medications from China and India and they make what they can but it’s still inadequate and very expensive.  Worse, a new, drug-resistant strain of AIDS now exists on the island. 

I think that it is admirable that the Cuban government continues to provide no-cost, advanced, medical care to people with HIV/AIDS from the moment of diagnosis despite extreme economic challenges. The commitment is there, but resources are really, really scarce.  Cubans are a resilient people, but they’re tired.  That’s why I wrote Waking in Havana, to tell their stories and give Americans a way to understand something about their lives and struggles. 

EJB: Finally, I want to switch topics for a minute because I was interested in the Jewish community you wrote about in the memoir. How large is the Jewish community of Cuba?

ES: It’s tiny, maybe 1500 people out of 10 million. The community is really interesting. After the revolution, while the Catholic church was anti-Communist, and seen as counter-revolutionary, Judaism was not treated as the same kind of threat and was not suppressed. Most Jews left the island after the revolution, of course, but during an era in which Christians would not openly wear a cross, and were typically reluctant to practice their faith, Jewish religious schools remained open and the government provided buses. This may be why some young Christians converted to Judaism. It was an easier way to be religious!

There are presently two or three synagogues in Havana and a few more in other cities. Canadian congregations have a sisterly relationship with them and provide all the needed accoutrements. When I attended a seder in Havana, they had Haggadah’s and conducted the ritual in Spanish, Hebrew, and English. They even had chicken soup with matzah balls!

Eleanor Bader is a freelance writer living in New York City.