Thursday Visits

On Thursday, our last full day of study, we started out at the Zenén Casas Centro de Rehabilitación in Old Habana. The school was inaugurated in 1999, but the building has murals and structures from the original Old Habana glory days where it served as the school of law.

Làzara Feifer, the center's director, met us and explained that the center has a census of 32 children and a capacity of 40' ages 1-20. It's a day program for rehabilitative treatment for kids with severe physical issues and ID. We were joined by Dra. Ivón V. Mayo Chirino, the psychologist, who spoke a bit of English. The center invites mothers to assist, but the added that, unlike other programs, parent participation is not required. It serves only the Old Habana area, providing outreach consultation for up to 3 months to people outside of their catchment area.

At this center, as all others, we were treated with utmost courtesy, yet more so than in other sites, evidence of scripting for visitors was noticeable. When a delegation member approached an aide (called "nanas") to ask about a child, a staffer tripped over  herself hustling to intervene, then firmly stated that she, and not the nana, would answer questions. The place was clean and kids were freshly dressed and combed. We didn't see enough kids to account for the census. We saw maybe 8 or so children, leaving me wondering where were the rest. Curiously, one girl with Angelman's was the daughter of an administrator of the center. We also saw a 12yo child with Crit du Chat.

The center had excellent dental facilities in-house. Additionally, we were introduced to ozone therapy, an alternative method used to heal wounds, boost the immune system, and promote other benefits in support of traditional medicines. I'll be searching for more information on this.

Our last official stop was a community project for people with Down syndrome located in a church next to a convent. Dra. Claudia Figueroa was not there, but psychologist Ana Maria led the program. She explained that this day activity center encouraged development of daily living skills, was affiliated with the Cuban School of Ballet for psicoballet and encouraged self-expression, as shown by a dance and traditional poems and conga with faroleros. Parents were present, but their ongoing role seemed clear and they appeared a bit cautious. It would have been interesting to talk with them one-on-one for longer to get a better sense of their opinions.

Interesting point on marriage: getting married in Cuba requires a permit, which explains why so few young couples bother with the formality (plus religion is not as influential in Cuba these days). When a couple with DD wanted to marry, it took 5 years to get the permit. Sadly, the families had the couple swapping homes every 15 days--15 with one then the other--and this eventually destroyed the marriage. Many parents fear these outcomes, along with the usual fears of parents of people with ID, so marriages are rare. Very interesting.