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.
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.
