A week with the Thuso Center...



There have been a lot of times in my life where I know my perspective on something has changed, but there have been very few moments where I have actively felt my world view shift. It’s marked by those rare times where I experience something which I know has left an indelible mark on me. This blog post is about was one of those occasions.

This past week at the clinic (my second week) I had the privilege of going around Shakawe with four men who work for the Thuso Center located in Maun (the closest big town to me, about 6-8 hours away). The Thuso Center provides learning and job training opportunities as well as community-based outreach for persons living with disabilities in Botswana. At the actual center in Maun, as well as other locations across Botswana, they train disabled Batswana (meaning people of Botswana) in things like leather works, agriculture, computer literacy, and so on. Then once a year they send out a team to visit their clients in their homes. This week they were in the greater Shakawe area and I had the privilege of doing these home visits with them along with my counterpart here, the clinic’s Health Education Assistant (HEA). 

I quickly realized that advocacy for individuals living with disabilities in this country is an area that has a lot of room to grow. Of course there are exceptions, but Batswana tend to hide their family members who are born with disabilities. Until this past week, I had not seen a single person with a noticeable disability in this country. And then in three days in my village alone I met people with Down’s Syndrome, Cerebral Palsy, hydrocephaly, Spina bifida, autism, physical deformities, blindness, and other ailments. In each case, the men from Thuso would sit down with the disabled person and the caregivers, often the mother, aunt, grandmother, or other maternal figures.

 I realized how much I have taken for granted our system in America for integrating persons with disabilities into mainstream society as much as possible. Granted there are many stories of poor treatment and discrimination in America as well, but in my personal experience they do not compare to what I have seen here. Take the school systems for example: in my public primary schooling in America I remember going to school with individuals with disabilities. Sometimes they would be in their own special education classrooms and sometimes they would be integrated into our classes, often with an aid helping them do the work as best they could. In Botswana, they can either be shipped off to special boarding schools or they don’t attend school at all. In the latter cases, they are kept at home and inside day in and day out. They have no social or academic stimulation and are therefore probably further stunted in their development. The team from Thuso fought last year to let in just three disabled students into the local primary school. Once there, however, it seems many of the teachers don’t know how to handle them. They punish and beat them for not performing as well as the other students. These disabled children are also ridiculed and beaten by fellow classmates because they are different. With the Thuso team we went and did an “awareness” at Shakawe Primary School where these beatings were taking place. As much as I hope the young kids understood the message Thuso was trying to get across, as is typical of kids under the age of 12, there was a lot of laughing, yawning, etc. It was another moment of frustration for me…I wanted to just stand up and somehow be able to make them understand how not-okay it is to treat another person like that. Regardless of how they look. Regardless of what they say or do.

We visited many people this week, but decided to include just a couple vignettes from what I experienced this week below. The names I used are made-up, but the stories are entirely true. I hope you are moved by them as much as I have been:

Mpho:  We drove up to a compound one morning in a vehicle marked clearly with “Thuso Center” to visit a young boy with a non-descript mental handicap and physical disability. He didn’t have the ability to walk or talk, and instead spent many hours sitting in the same position on the floor with his legs bent under/behind him. He had the first signs of pressure ulcers along his curved spine—an undeniable discoloration that should not have been there. Mpho’s mother was supposed to be carrying out simple physical therapy exercises with her son so that his legs would not become permanently bent under him in the manner he was sitting.  The men from Thuso had shown her how to do these exercises last year, and had previously explained to her that she only needed to do them for a few minutes every day. It had now been a year since the Thuso team had visited Mpho, but they were frustrated by the fact that his legs were becoming more and more stiff and could no longer be extended out of about a 90degree angle. To make matters worse, Mpho’s mother was nowhere to be seen. The family at first tried to make up reasons she was missing, but it soon became clear she had run and hid at a neighboring house when she saw the Thuso vehicle coming. She knew she had done wrong by the boy. 

Karabo: We pulled up to a nice looking house that had tall barbed wire fence surrounding the extent of the property. We found the mother and father at home with a young boy of about 4 years, and also with Karabo, who was around 12 years old. Karabo clearly had autism. Upon speaking to the parents, we learned that both have government jobs. The mother works locally, while the father works in another village a few hours away (it is normal for the government workers to place their employees anywhere in the country without much regard for the location of their families). Unlike Mpho, the parents seemed to have a real concern for their son, but they seemed exhausted. As we pulled up, both were preparing to go to work, leaving Karabo home alone. It became clear in that instant that the barbed wire fence was not to keep people out, but rather to keep Karabo in when they were not there. The parents had tried multiple times to register Karabo in a special boarding school for individuals with disabilities, and also in the regular local schools, but were rejected on all fronts. The social workers in Shakawe and neighboring Gunmare also refused to help the family because both parents work for the government. They were told they could afford to hire an outside person on their own to care for the child when they were gone, but they hardly getting by as it was. The father also had requested multiple times to be transferred to a government office near Shakawe so he could stay at home, but had been denied multiple times. They were clearly at the end of their rope, exhausted, and quickly losing hope.

Lorato: We found this 15 year old girl sitting under a tree by herself in a tattered-looking wheel chair. When we pulled up, the girl’s aunt came out from a neighboring house and informed us that the mother was nowhere to be found…again. The mother has seemingly turned her back on the maternal responsibilities she has for Lorato. After more probing, we learned that Lorato has a seizure disorder and was prescribed a medication to prevent them. If she doesn’t take them, her seizures will increase in length and frequency and cause damage to Lorato’s brain. When the mother picked up the medication, she threw them away along with the paperwork stating that the girl was in need of them. In this country, disabled persons also receive a food basket from the government. Unfortunately, in the case of Lorato and many others we saw, it seems as if perhaps the family is only using the child for the food basket. It became clear the while Lorato’s mother was MIA and/or intoxicated most of the time, the mother’s sister/Lorato’s aunt was the one making sure the girl was clean and fed. She instructed us on where to find the mother, and we ventured off to find her in town. The men from Thuso had a stern conversation with her about how she was treating Lorato. They even had to remind her that she should love her daughter, regardless of her disability. The mother avoided eye contact for most of the conversation. She shared her belief that her daughter was born this way because of some sort of witchcraft, a very widespread belief in this part of the country and a major reason for why people hide family members with these disabilities. Hopefully it was communicated to her well enough that her daughter’s condition is not the result of witchcraft, that she shouldn’t be ashamed, and that she should find it within herself to love her daughter, regardless of her condition. But we will have to wait until next year to see if she will be able to step up as a mother to her daughter, who never did anything to make her unworthy of something which should come so simply—her mother’s love.

It was very hard for me this past week to bring a non-judgmental front to these home visits. When it became clear that some instances involved differing levels of neglect and maltreatment, I found a rising wave of frustration that I couldn’t suppress. And I didn’t want to ignore it. Instead, I’m using it to fuel ideas for ways to incorporate issues of disabilities in this country and in this village into my service. I’m not sure what form that will take yet, but I know it will be an important part of what I do here.