One of the lovely things about my Spanish school, Proyecto Lingüistico Quetzalteco de Español, is that they offer “Spanish for social workers” where students are matched with teachers who have social work backgrounds. One week, after practicing my spiel in Spanish about my research interests around orphanages and deinstitutionalization, my teacher asked if I was interested in visiting an orphanage. At first I hesitated, given the ethically problematic nature of orphanage tourism, but when it became clear that she had personal connections to the homes and our visits would be brief and educational, I agreed.
We ended up visiting two very different establishments, neither of which were strictly “orphanages,” but perfectly illustrate the old and the new when it comes to care for children with special needs.
The institution for individuals with disabilities
The first establishment we visited was a residential center funded and run by a local Catholic church. The complex was huge and well-kept, made up of several interconnected buildings, a playground in the middle, beautiful, grassy grounds, some livestock in pens, and a shrine dedicated to the church’s patron saint. Inside there were several therapy rooms—one for speech and language therapy, one for physical therapy, one for special education, and several others too, including one that looked like it was for computer classes. It was well-staffed and there were some young people who looked like interns from a local university working there as well.
But it definitely felt like, well, an institution. Residents young and old were all in wheelchairs (nice, modern ones at that), and the majority were tightly restrained to their wheelchairs with blankets and cloths. (I think most residents I saw were between 10 and 30, but I was told babies as young as two live there too.) These young men and women mostly appeared non-verbal, and some clearly had microcephaly or Down’s syndrome, while it was unclear what sorts of disabilities other youth had. Nurses were bottle-feeding youth two at a time, a bottle in each hand. Sometimes they wheeled them into the chapel and left them to sit, perhaps hoping the young people would receive graces from God by being in the presence of the tabernacle.
All of the children and adults in this home lived there full time. And the staff told me that almost none of them had family who visit them. Their physical needs were being taken care of, but they had been abandoned by any family and were completely segregated from the wider community. My teacher explained that while some families simply live far away, it is mostly the stigma of disability that leads them to abandon their children in this way. And especially if they are told that there is no hope for the child to “recover” from their condition, they may just give up on them. I was given the impression that the institution was the better alternative to being neglected at home, living on the streets, or worse.
Community center for children and families: Fundabiem
The next day we visited Fundabiem, a nationwide organization with several locations throughout Guatemala. This Fundabiem location was in a much smaller structure than the institution, but was similarly well-kept and staffed with professionals and student interns. In later conversations with other Guatemalans, I was told that Fundabiem is well-known for its fundraising telethons whereby they raise large amounts of money.
Their model is quite opposite from that of the church-affiliated institution.
Nobody lives in Fundabiem; rather, a van (or microbus, as it’s called in Guatemala) collects children and their caregivers from their rural homes once a week and brings them into the city to Fundabiem. There, the caregiver (usually a mother but perhaps also a grandmother or other relative) attends a series of therapies with their child throughout the day: occupational therapy, speech and language therapy, special education, physical therapy, even, if needed, hydrotherapy in Fundabiem’s pool. The children and parents rotate throughout the different therapy rooms the way American middle schoolers go from class to class throughout the school day. Unfortunately, the therapies are not one-on-one. I saw moms in indigenous clothing showing their little children with Down’s syndrome flash cards as part of speech therapy, presumably at the therapist’s instruction; in the special education room, moms and dads helped their children complete an arts and crafts project; in physical therapy, parents looked on as young professionals taught children with conditions like cerebral palsy how to walk, and when a therapist wasn’t working with them, the parents continued to.
At the end of the day, the van takes the families back to their homes, where the parents are encouraged to continue therapies with their children until they return a week later. The next day a new cohort of families comes in for their round-robin of therapies. They pay what they can; most pay nothing at all.
Old and new
Although I know I only had tiny snapshots of each place, and things are undoubtably more complex than they seem, my visits felt metaphorical. I felt like I had traveled in time and space straight from a Post-Soviet institution for children with disabilities to one of the community centers into which deinstitutionalization advocates argue orphanages should be converted, even though the two establishments were only a few miles apart. The institution mirrors the “old way” of caring for children with disabilities, while Fundabiem could serve as a model for the “new way”: what supports to families could look like post-deinstitutionalization.
My teacher pointed out that many children in Fundabiem had “less severe” disabilities than the youth in the other institution. On average, this was true, but not across the board. There were girls with Down’s Syndrome in both places—but receiving therapies with mom in one, and restrained to a wheelchair without any stimulation in the other. There was a young man zooming across the halls in his wheelchair in the church-affiliated institution who didn’t seem to have severe cognitive disabilities, and yet he was in a residential home segregated from society. Many of the youth in the institution looked, as they say, “low functioning,” but I wondered what they could have achieved had they been living with the attention and care of a family and the services of Fundabiem instead.
In both establishments, children had someone taking care of their physical needs and had access to therapeutic and educational services. But I think the benefits of Fundabiem over the institution are numerous; for example:
- The children live with families (a human right stipulated in article 23 of the Convention on the Rights of Persons with Disabilities).
- The children live in their communities rather than being segregated from society (see article 19).
- The children receive all therapies alongside their parents, fostering parental involvement in their services and treatment (well-documented as a huge contributor to kids’ success in special education and therapy).
- I bet that by being involved at Fundabiem, seeing other children’s progress, and being around adults who treat children with disabilities with care and dignity, parents’ own negative perceptions around disability may be lessened.
- I also imagine that the families have the opportunity to create community with other parents of children with disabilities, helping to reduce stigma and create networks of social support.
But through talking with my teacher, I also came to understand that there would be vast, vast challenges in trying to deinstitutionalize places like the ones I saw. The still-strong stigma against people with disabilities would have to be tackled by huge advocacy campaigns, not only towards the families of children with disabilities but also towards society at large. And as long as there remains little in the way of government social services, poor, rural, and indigenous families will continue to lack access to the services necessary (medical, therapeutic, special education) for caring for a child with severe disabilities in a home environment. I doubt a private charity like Fundabiem could (or should!) carry a whole nation on its back, and its once-a-week offerings are certainly not enough for most children.
While Fundabiem is a shining example of the way things can be, as far as I know now, efforts to implement family-based care for orphaned and abandoned children in Guatemala remain small-scale, scattered, and not particularly targeted at children with disabilities. (The only examples I know of: Buckner’s foster care pilot and SOS Children’s Villages.) I wonder, how much time, money, and political would it take to leave the old way behind entirely? Will those young people living in the institution ever enjoy the human rights—autonomy, inclusion, family—to which they are entitled?