• Elena Schwolsky
  • The AIDS Sanitarium - Los Cocos and Proyecto Memorias - Cuba - 1/11/11
The AIDS Sanitarium - Los Cocos and Proyecto Memorias - Cuba - 1/11/11
Written by
Elena Schwolsky
January 2011
Written by
Elena Schwolsky
January 2011
The AIDS Sanitarium...Los Cocos

Carlos picks me up in a Citroen minivan for my first trip to the AIDS Sanitarium on the outskirts of the city. I worked with GPSIDA, an AIDS Prevention group whose members are all Cubans living with HIV-AIDS, in 1996 and have maintained close contact ever since. The minivan belongs to the group, along with offices in the Sanitarium and a full time coordinator, and I know how hard won this official recognition has been. There have been times when Cuban health officials have tried to suspend the activities of the group, but it appears that at this moment they have lots of support.

When we turn into the driveway at the Sanitorium I am shocked. The gleaming white buildings with red tiled roofs I remember are scuffed and dotted with mold. The administration office, a colonial style building leftover from the Sanitarium´s former life as a military rest and relaxation center, sits abandoned in the center of the circular driveway. The roof fell in in a bad storm, Carlos tells me, and they have been unable to repair it. The leafy grounds still seem peaceful and tranquil, as I remember them, but unkempt and unmanicured.

Everywhere I go, from the scientific conference I attend in the theater, to the worker´s cafeteria, to Arco Iris, a once sparkling dormitory that now looks like a poorly maintained public housing project in the U.S., there are suprise reunions and sad absences. Maria Antonia, the young psychologist who was my ¨boss¨when I worked here, designing the first peer AIDS education course with her, long ago left for the U.S., where she lives in Washington D.C. with her husband and two sons. Ricardo, the tall graphic artist who was so desperate and depressed that he injected himself with a contaminated needle to enter the Sanitarium, died in 2001 and Emilio, the quiet tailor who helped us sew the first panels for the Cuban AIDS quilt, has also passed on. But here is Mayda, the freaky poet, standing right in front of me. No more bleached punk hairdo, tattoos and piercings, she looks middle aged and maternal. She still writes poetry and has won several national prizes, she tells me with the same shy manner that I remember. And Xiomara, a small dark skinned woman with terrible disfiguring burns over most of her body from a suicide attempt, rushes over from the laundromat where she works to give me a big hug. Xiomara contracted AIDS from blood tranfusions used to save her life after she burned herself. Later she shows me a wrinkled photo of the two of us together that she has saved for more than 15 years.

The Sanitarium has about 200 residents now and is one of only three in the country that are still open. Cuba´s approach to AIDS, which included 13 sanitariums across the country at its height, has been much criticized for quarantining people with HIV away from their communities. But they have managed to nip the epidemic in the bud and have the lowest HIV rate in the Caribbean. When I was here in the mid’90´s, the struggle was to open up the sanitariums and allow people to move back to their communities. in every province. An ambulatory system was created which allowed most people to move back home after spending 3 months in the Sanitarium receiving education and treatment. Now, somewhat ironically, the struggle seems to be to maintain the Sanitorial system as a necessary refuge for those who can´t live at home because of social problems or family rejection, or who need to be here for medical reasons. In the midst of the global economic crisis, which has exacerbated Cuba´s continual state of crisis, the government can no longer afford to maintain such an expensive system of care.

My visit is an emotional and nostalgic journey back to a period of my life when my world revolved around AIDS, both at home and here in Cuba, and connects me to the spirit and energy I felt then, the dedication and sense of purpose for my work, that I have not felt with such intensity since.

Proyecto Memorias...the Cuban AIDS Quilt

We arrive at the central square of Santiago de Las Vegas, the neighborhood where the Sanitarium is located, at around 10 AM and unload the van. A group of young members of the group gets busy setting up a PA system, while others place the quilt bundles around the square. This block bordering the park serves as a bus stop and buses jammed with Cubans heading to work pull up at frequent intervals. Many stop to watch the setting up process.

When Oscar, the coordinator of the project, gives the signal, we line up at one of the quilt bundles and, as the music swells in the background, we move slowly around and take our places for the unfolding of the quilt.

The seed for this project was planted during my work with the group in 1996, when I shared photos of the AIDS Quilt panels I had made for my husband Clarence, who died of AIDS in 1990. Together we created a panel to honor six members of the Cuban group who had died. Despite misgivings and starts and stops, the project has moved forward and is now Proyecto Memorias, or project memories, a centerpiece in Cuba´s national AIDS prevention work. Last year, the group traveled across the country and unfolded the quilt in each provincial capital.

I am invited to join the opening ceremony and watch carefully so as not to lose my place or make a mistake as the group moves slowly around each bundle and unfolds the ¨manta¨or block of 8 panels. After we unfold it, we lift it high in the air and circle once, then carefully place it on the broken concrete of the plaza. Oscar reads the names of those who have died of AIDS, such a small number compared to the 40,000 names now memorialized in the U.S. quilt.

After the unfolding, I move around the mantas with the rest of the Cuban onlookers...young couples eating ice cream cones, a mother shielding her baby from the sun with a red umbrella, a soldier on a bike. Group members pass out postcards, and Mayrelis stands in the middle of the exhibit and invites people to record their reflections in a book. An education tent set up on the edge of the exhibit quickly gathers a crowd as Oscar announces that people can get information, condoms and have a ¨rapid test¨ for HIV.

I am struck by how the quilt has been brought to life here in this small Cuban park. The quilt blocks are simple...a favorite T shirt or dress, a cigarette pack, a few lines from a poem affixed to a white sheet ...and not as elaborate as those I have seen in US displays. Fabric and thread is hard to come by. But the quilt is alive and doing its work...creating awareness and sensitivity and helping to educate people about this disease. In the US it is locked in a huge warehouse, too big to ever display in its entirety again. I had to pay $500 to get Clarence´s panels to New Jersey for the 20th anniversary of his death.

As I circle around, I see Ricardo´s panel, and Emilio´s...and the orchid that Maria Julia painted for her husband Reynaldo. The first panel we made is there, the island of Cuba in a black sea, with a royal palm rising powerfully out of the center. The names of the six who are remembered are written on the leaves of the palm...Tomas, Niurka, Miriam...people I knew and loved. The emotional reaction that the quilt engenders is visible on the faces of many onlookers. For a few minutes, the laughing stops and the ice cream cones melt as the weight of what they are viewing sinks in.

Later, at the GPSIDA office, the group presents me with a beautiful bouquet of pink gladiolis and a plaque naming me as an honorary member of GPSIDA and recognizing my ¨commitment to the fight for the prevention of AIDS, my disinterested support in the founding and development of Proyecto Memorias, and my unconditional friendship.¨ I am moved to tears by this simple presentation, which comes after a year of losing my job and my health education program in New York City. And I know how much it has cost them. In the early years of the project, Carlos has told me, they could not mention my name out of fear that it would bring unwanted attention to the role of an American woman in the project and inflame long standing political conflict. Like a proud mother I pose for a picture, surrounded by group members with my flowers on my arm, and the plaque displayed for all to see.

Let's be friends

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