What does a community advocate look like? Would you recognize one if you saw one?
If you had posed this question to me two months ago, I would have struggled to come up with an intelligent answer. Now, however, I have been fortunate enough to work side-by-side with a handful of women who have shown me an inspiring example of community advocacy in its purest form.
These women are the promotoras de salud (health promoters) who work with the community organization, Fundación Cuidado Infantil Dominicano (The Dominican Foundation for the Care of Children). FCID is a non-profit organization founded in 1990, with the mission to empower local communities of Santiago by promoting health and integrity through acts of compassionate service.
Due to lack of funds, promotoras do not receive monetary compensation for their services. Although most of them have families to raise and outside responsibilities to tend to, they still feel called to give of themselves for the sake of their community.
Within FCID, I am working with the promotoras of the Rehabilitation program which works with families of children with mental and/or physical disabilities. Promotoras make weekly house visits to the families of special-needs children who live in the underserved neighborhoods of Santiago. During these visits, the promotoras work with both the children and the caretakers. They administer physical and occupational therapy to the child while training the caretaker. At the end of their visit, they leave easy-to-understand instructions detailing how to perform the in-home therapy until the next visit, when they will return to assess the child’s progress and set new goals.
Twenty years ago there was nothing like Fundación in these neighborhoods and when it was founded, Fundación was faced with some challenges. To illustrate the hard reality of these children, Eunice, a member of the FCID staff, shared the following with me:
“When I was little, there weren’t so many special needs kids then as there are now. You would see them, but hardly ever. And when you saw a child, for instance one with hydrocephaly, who had a large head and couldn’t function properly, you didn’t talk to that child. All the kids would make fun of him.”
Due to lack of education, most mothers could barely read or write, let alone understand the nature of their child’s disability or offer the level of therapy that he or she required. Additionally, it was almost impossible to get the fathers involved due to the highly machista nature of Dominican society. To add insult to injury, Eunice emphasized how special needs children and their families were highly stigmatized.
“It was an embarrassment for families to have a child like that. The parents would tie him up and leave him in a back room where he would stay so that the neighbors wouldn’t know that there was a disabled person in the family. Sometimes you’d walk in the house and right away you could tell from the smell of urine and feces that something bad was going on there.”
All in all, the marginalized communities of Santiago were ill-prepared to meet the needs of these precious children.
Caring for a special-needs child is a difficult task under any circumstances. But for a family living in the barrio, it can seem overwhelming. Promotoras offer support to these families, where no other support exists. Many times, they are the only lifeline available to disabled children and their families in these communities.
The beauty of this program is that the help comes from within. Each promotora is from the neighborhood in which they work. The barrio is their home and they are fighting to make it a better place for the families who live there.
It has been twenty years since Fundación Cuidado Infantil Dominican was founded. Yet in this relatively short period of time, FCID’s presence in Santiago has made a notable impression on the community. Today, I am assured by the promotoras, things are changing.
“A lot has changed since then. Now there is a higher level of awareness. You see ads for special needs children on TV, and handicapped parking at the store. These things did not exist 30 years ago.”
Although progress has been visible, there is still work to be done. Even in well-to-do circles, a cloud of stigma and misunderstanding surrounds special-needs children and their families. I spoke with a highly-educated Dominican professional who has travelled the world and taught as a university professor. We were discussing my work with the FCID families when he paused to offer me the following assessment:
“Let me explain something to you. These people are like animals. They lack both knowledge and awareness, and they live in total chaos. The men are like stallions that breed with every female they meet. I met one man who had eight children with eight different women. And these women… they have no self worth. It’s as though they are nothing. I don’t know what goes on in their minds… they must be masochists to live like that. They get pregnant so young and go on to have lots of babies. There is so much incest, malnourishment and promiscuity in these communities. That is why so many of their children are born with disabilities.”
His words hit me like a splash of cold water, and left me a little stunned. Dominican society has largely abandoned these families, and left them to fight for their own survival. Can you really place blame on young men and women who are born into these pre-existing conditions? How can they be at fault for creating something that was going on long before them?
If their reality is ever to change, someone must speak out against discrimination. Someone needs to advocate on behalf of the victims of this type of thinking and educate the misinformed to promote understanding, respect, and change. In short, someone must act as an advocate to and for the community.
Here in Santiago, that someone is Fundación Cuidado Infantil Dominicano and their team of health promoters.
Southern Methodist University