Hours after arriving in Southern Africa, I stood in the dust, waiting to be picked up from Matsapa Airport. I was beginning to feel a little nervous, but the afternoon sun was bright and I felt assured that someone would come for me eventually. Waiting was something I would get used to in Swaziland. There was no sense of urgency about time, and I found this extraordinarily relaxing.
When my ride did come, he unapologetically gave me what looked like a cooked corn on the cob out of his glove compartment, and asked me to wait in the truck while he picked up packages. As we headed to Siteki, the home base for my stay, we talked about his life, which he summed up saying, "I live in Swaziland; I was born in Swaziland; I am Swazi."
Swaziland is a small landlocked kingdom, bordered by Mozambique and South Africa. Given the historical turbulence of its neighbors (Mozambique has endured years of civil war and South Africa is still recovering from apartheid), Swazis have tended to stay put. SiSwati, a melodical language full of alliteration, is the predominant language in Swaziland, but most people have some rudimentary English, as this is the language of formal schooling and the official language of government.
I went to Swaziland to spend six weeks as a volunteer speech-language pathologist. I had heard of the opportunity through a friend who had been doing physical therapy in the country for the past 12 months. I was to work at Good Shepherd Hospital and St. Joseph's Mission School.
Good Shepherd Hospital
Good Shepherd Hospital is situated outside of Siteki in Eastern Swaziland. About a one-hour drive from the capital, the hospital draws its patients from the 300,000 people who live in the surrounding areas. It serves both outpatients and inpatients, delivers over 100 babies per month and dispenses Human Immunodeficiency Virus (HIV) medicines through its antiretroviral clinics. With Swaziland's population at approximately 1 million people and a recent estimated HIV prevalence of over 40%, medicine distribution is an important function of the hospital. For those unable to get to the hospital, a home-based care service sends a small team of medical staff into the communities to provide follow-up care.
At the hospital, patients were seen for speech and physical therapy in the same room. Clinicians also shared an interpreter, so both clinicians would often see patients simultaneously when we were busy. Outpatients who wanted services would come to the clinic room and sit outside on the bench and wait to be seen.
Amy Ross, the volunteer physical therapist, had given flyers announcing my arrival to Peace Corps volunteers to post in their communities in order to rustle up some business. Some of the volunteers would accompany their referrals to the hospital so they could help the families follow up on the recommendations. Speech referrals were also made in the outpatient clinic, and patients would come over after their medical visit.
Outpatients varied widely, from an old man who was unintelligible after a stroke to an 8-year-old who was not yet talking. There was no general trend to the population that was coming for speech services, and I felt that much of what I did in Swaziland was education rather than treatment. Parents were bringing their 8- to 12-year-old children "because they don't talk yet." I did not refer to my heavy, well-traveled textbooks largely because the presenting problems were so large, the resources so limited, and the options for services so minimal.
Only once did I recommend using pictures to communicate. I demonstrated to the family how they could make simple drawings that their son could use to make requests, and I drew a banana. The interpreter clearly thought I was out of my mind and said, "Sisi, he does not eat fruit. They are too poor for fruit."
After much explanation, it became clear that picture communication would not work because consistent access to paper and pencils was a challenge for most families in the community. The families were so polite and would agree with almost anything I suggested, so Jacobena Magagula, the interpreter, became a good gauge for what might work and what was too difficult. With Jacobena's assistance, Amy and I spent most days problem solving case after case.
One afternoon a father brought his 8-year-old daughter to me for an "ear operation" because "she was deaf." Her teacher believed she couldn't hear so he had taken her to the capital to have her hearing tested. Apparently they "had the machine but no one to work it." I took this to mean that he had gone to Mbabane, the capital, where they have an audiometer, but the clinician was not there to test her hearing.
Clinically, it seemed unlikely that the child was deaf. The daughter spoke clearly, was reportedly doing very well at school and understood directions from her father in SiSwati. We eventually resolved the visit by sending the child to the outpatient clinic where a nurse looked in her ears and noted impacted cerumen. The following week after ear drops the family returned and reported her hearing was fixed!
Another child who came in, Nontokozo, did appear to be deaf. This 6-year-old girl lived with her grandmother and only responded to touch. She was able to imitate bilabials, and could eventually respond to voice on/voice off cues for other sounds. But what was I to do? There was no audiometer, no regular speech clinician in the area, and limited schooling options. Fortunately, there is a school for the deaf in the Siteki area that she may be eligible to attend.
Other outpatients included a 21-month-old girl, Thabiso, who could sit independently, say an equivalent to "dada" and "mama," but could not walk, stand, or say other words. Phowi was a 5-year-old boy who attended school, presented with articulation issues, had gross and fine motor delays, and refused to self feed. Another 3-year-old girl presented with hydrocephalus, was able to eat well, but had stiff joints and made no sounds.
One of my more hopeful patients was Celimphilo (the "C" was a click so I never could say her name correctly), a happy 6-year-old with a history of chronic pneumonia and delayed milestones. The child may or may not have had a diagnosis of cerebral palsy and presented with minimal head control, difficulty sitting, walking, and talking. She could do a supported stand and an atypical crawl/shuffle movement. In a supported sitting position on your lap (with her head between your body and your arm) Celimphilo immediately began to imitate and participate in sound play. She was also able to get a spoon into her mouth and attempt to self feed.
After her second visit with both grandma and dad, we referred her to an organization to get a special chair made for her that would help her sit independently. We also provided the family with the funds for transportation to the organization's office and money to pay for the chair.
Inpatients were a whole other kettle of fish. This was the most grim and least pleasant part of the whole experience for me. It was frustrating to have so few clinical options. Forget about barium swallow studies. Culturally, gastronomy tubes were not preferred, and very few patients were given intravenous fluids.
Patients received morning tea at around 10 a.m., a time when I was on the wards and I assisted those who needed it. Everyone received the same mug of tea and two pieces of bread (perhaps with jam or peanut butter). Patients typically received the same meal regardless of diagnosis or condition. If they didn't drink or eat, the meal was taken away. There were patients so weak that they physically could not take food or liquid on their own. The staff and I literally propped patients up and tried to support their chin so they could take something. It seemed like there was no good option. With patient occupancy typically around 185%, nurses were extraordinarily busy and did not have the time to feed patients.
On a bright note, I also spent time daily on the children's ward, typically just for arts and crafts, card games, and other general language stimulation. I was also granted teaching time to work with the hospital's nursing students providing weekly in-services to the nursing staff on the children's ward.
St. Joseph's Mission School
In addition to the hospital work, I spent one day a week at St. Joseph's Mission School on the outskirts of Manzini in central Swaziland. This school reportedly has the only special education program in the country and many of the children also live as boarders on campus. Most children with special needs do not receive any education. I saw several older children with special needs as outpatients who were left to spend their days entertaining themselves. I generally encouraged parents of these children to engage them in chores and other activities of daily living.
There are four special education classrooms at St. Joseph's as well as a preschool room (crèche) and a special education crèche. The children in the special education crèche are moved up to the special education classrooms between age 7 and 9. The children then go to the "lowest" room and move up as ability dictates. Eventually they may transition from the "highest" classroom to the mainstream classes. Many do not progress through the classes, but remain in the special education department until they turn 18. At that time, they either return to their village or receive training through an on-campus sheltered workplace.
My time at St. Joseph's was overwhelming. The students were a mix of undiagnosed syndromes and cognitive disorders. Cerebral palsy and Down syndrome were prevalent and there seemed to be little recognition about the inherent differences in profile for these students.
Children in Swaziland typically learn by rote. Teachers lecture and the children chant back memorized information. The special education department was no exception. The children would sing and clap along to cycles of rhymes and memorized information. Each would come to the front and start a song that their classmates would join in, before smoothly transitioning into a completely different chant with another leader.
When I first arrived, I talked with the staff about the differences between speech and language disorders. However, because of the gravity of these problems, I spent my time working with them on curriculum development to help them think about educational goals for their children as well as modeling techniques for language stimulation. The teachers already had goals that they used in their end-of-year reports but had no system set up to teach or measure the things in their reports. One goal, for example, was "the child knows his own birthday," yet the teachers themselves had no idea how old their students were. Teachers were very receptive to any information I had and I tried to ensure that suggestions would fit with the model of teaching currently in practice.
Most people ask, "Do you think you made a difference?" I believe what I gained was much greater than what I gave. I gained a perspective about the systems that are in place in the United States for people with illness and disabilities. When I feel burned out with work in Chicago, my feeling tends to be sparked by attitudes that services being provided are insufficient. There have been days, when our team has to deal with people demanding cab fares, lunch, and birthday gifts, as if these are basic standards of care.
In Africa, I felt that I should be doing so much more, and yet teachers, parents, and patients were thankful for whatever we could offer. For the teachers at St. Joseph's, I think that much of what I was talking about and modeling was too unfamiliar for them to implement, but I offered materials donated by Super Duper Publications, and they were excited to have such new teaching supplies. The lack of supplies, especially books, was notable in all the classrooms.
At the hospital, I found that, by the end of my stay Jacobena, the interpreter, was able to educate families about language stimulation, talking to children, encouraging imitation, and sound play. It is likely she will continue to do so as speech patients continue to come to the clinic.