“Di m’ ki sa ou renmen, m’a di ou ki moun ou ye.”
Tell me what you love, and I’ll tell you who you are.
History of PAZAPA & the Siloé Project
In 1982, a group of volunteers from the San Francisco Bay area, including Peter Cunningham (right) and Patty Westerbeke, came to Haiti to work at Mother Teresa's hospice for people living with HIV/AIDS in the La Saline slum of Port-au-Prince. Inspired by this experience, they established the Siloé Project, a U.S. 501(c)(3) nonprofit, to raise funds in support of community-led initiatives in Haiti.
Siloé's first project took the group to Jacmel in order to help Dr. Abel Gousse rebuild his clinic, which had been destroyed when Hurricane Allen passed through Haiti's Southeast at peak strength in 1980. Through this experience, Siloé's founders met Tony Antoine, a physiotherapist and local pastor (pictured at center in October 2017, training a mother to rehabilitate her daughter's clubfoot after casting) who remains on the PAZAPA team to this day. Doris Clark, a Peace Corps volunteer who worked as a nurse in the Cité Soleil slum, joined the coalition in 1985. Together, they worked to rebuild the clinic, assisted Dr. Gousse in resuming operations, and sponsored community health workers who established rural outreach programs bringing medical services to isolated villages.
One day, when the clinic's reconstruction was nearly completed, a young woman came in seeking treatment for her child with Down syndrome. It was at that moment that the team realized they were unable to provide the specialized medical care and support that the family needed, nor did they know of other places where help might be available.
Because there is no public safety net in Haiti and all health and education expenses are borne by parents, having a child with a disability creates an additional burden on families already living in extreme poverty. Stigmatizing misconceptions that are widely held in Haiti result in disabilities being commonly viewed as hexes from angered deities seeking to punish those who disobey, or curses applied in retribution for harms inflicted on others. Due to these norms, having a child with a disability in Haiti not only causes financial strain, but also brings enormous shame to families as their beloved family member is considered "cocobai," or worthless. Parents often separate because a father knows that if he fathers a child without a disability with another woman, the community will believe that the curse or hex was not his fault, but rather that of the mother's. It is also believed that many conditions are contagious, so people living with disabilities are feared, shunned and often hidden away from public view in their homes.
The Siloé team did not yet have the experience to understand all of that. What they did have was the intention to continue accompanying marginalized families in Haiti as they worked to improve their lives, and they were driven by that mother needing services for her baby that no one could provide. They knew that child couldn't be the only one. Tony started visiting homes on his bicycle throughout Jacmel and surrounding villages to find these invisible children. He soon came to recognize that there were many children with disabilities in the Southeast Department who were denied medical treatment, educational access, social development, and opportunities to participate as valued members of their communities. Based on this needs assessment and in consultation with families affected by disabilities, the Siloé Board decided to focus on working alongside this vulnerable but valuable population. In 1987 with Siloé's support, the PAZAPA Center was established by Tony and Jane MacRae (left), a Canadian citizen living in Jacmel. After Jane died in 2008 her daughter Marika MacRae, who was born in Haiti and serving as PAZAPA's program director at the time, became Director. Over the years, PAZAPA has grown and diversified its programs through the support and collaboration of individuals and organizations throughout Haiti, Africa, the US, Canada and Europe.