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| Elia (5) getting a skin screening from Dr. Nelson |
I was able to hear some of Sister Martha’s story, which she
shared in a time of testimony. It was shocking to hear about the level of
stigmatization she experienced in her own family—beaten by family members and
even sold off, barely a teenager, into a polygamous marriage. She ran away to
avoid that fate and was looking for a solution in suicide before she had a life-changing
encounter with the love of God. She was eventually able to forgive her family
and has been reconciled for many years since.
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| Dr. Nelson with Sr. Martha showing protective eyewear |
It is not unusual for PWAs to be abandoned, especially by
fathers who usually assume the birth is a result of infidelity. The training we
gave teaches medical professionals how to counsel parents that albinism—a
recessive genetic phenotype—can only result with a genetic contribution from both
parents. No one is to blame.
Other modules focused on proper training on skin protection,
as well as addressing visual problems albino children encounter in school, problems
not easily corrected with glasses, which require other accomodations.
I was asked to teach a module on advocacy which I was happy
to do and reminded them that advocacy begins with them. They are trusted,
educated community members with authority to enforce rights granted by the
govt. to people with disabilities, particularly children in school. (Often
children with albinism are perceived to be of lower intelligence because their
poor vision prevents them from reading the board properly and participating in
activities.) I reminded them of their capacity as medical professionals to instruct school administrators to make necessary accomodations for children with albinism.
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| Skin screening participants |
I also reminded them of the old adage that the primary
provider of health care in a family is the mother! It is not someone in a
clinic or hospital. “If you educate the mother, she will protect the child from
sun exposure and teach him/her to protect themselves.” (It seems strange to
have to say that, but often medical treatment will include little or no education
or advice.)
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| Medical professionals practicing skin screening on Makorere |
The training culminated in a free clinic for people with
albinism in the area to get a skin exam. More importantly, it was an
opportunity for the dermatologists to teach the participants how to do a
primary exam of the skin on a person with albinism. We had about a half dozen
people show up and were very happy to be ‘guinea pigs’ for the participants to
practice on. Dr. Nelson did a demonstration at first, then the participants
broke up in groups and examined some of the patients themselves. It seemed to
be a very valuable part of the training. Personally, I was very happy to see
that the people coming to the clinic were well-covered and generally had very
well-cared-for skin. They had been trained on proper care, which is evidence
that the effort to educate throughout the nation is having an impact. I am
hoping that the 90% fatality rate of people with albinism by age 30 has been substantially
reduced in the past decade.
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| Overview of medical training participants |
The practical screening was the last thing we did on the
third day of training, after which we packed up and headed back to the town of
Musoma, where I would catch the bus back to Arusha. Sister Martha and I stayed
at the Mara Paradise Hotel again. This time I was put in a room with ‘airconditioning’.
It was a window unit sitting on a desk. When I turned it on, cool air came out
the front, but very hot air came out the back because it was not venting out a
window. Within about 15 minutes the room was baking hot. I shut it off and
decided I was better off without it.
I had to get up about 4 in the morning to get a 5am cab to
the bus stop. I had a momentary scare because a different bus company came than
the one I had a ticket for. Fortunately they had a ticket for me, as they had
switched routes with the other company that day.
The ride was as bad as, if not worse than the ride up. This
time it was much more crowded. Every seat was sold, but then they refilled the
bus at least once over with standing room passengers in the aisles. So, it was
packed to the gills for the 14-hour ride. (I did see a cheetah walking in the distance and multiple hippos as we past through the Serengeti, but that was small consolation for the discomfort.) I was glad to be back, although
arriving at Arusha’s main bus stop Stendi Kubwa, is somewhat intimidating as
you face an onslaught of cabbies, porters, conmen, and pick-pockets, who are
dying to do something for you until you finally get into a cab and drive away,
hopefully with all your belongings intact.
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| Oren helping with dinner during my absence |
It was good to be home on Thursday evening. Rebecca and the
kids were at a dinner at another house in the compound. There is a monthly ‘team
dinner’ for the members of the compound who work with the Joshua Foundation.
They are happy to have us join in though. The kids were very happy to have me back as well, although I
fell asleep quite early on Thursday and we all went to work and school early on
Friday morning.
The drive to Longido is strikingly beautiful, as you
leave Arusha heading north past the western slopes of Mt. Meru. On your right,
folds of hills rise up to the mountain. To the left, the land drops off into
increasing barrenness. People somehow still live out there to west, but water
is scarce and the soil is infertile. In fact, this land was never meant to be
lived in. According to a long-time missionary, just 50 years ago, it was only
ever visited by roaming herds of wildebeest and zebras, once the rains had
fallen and grass shot up. Those animals came, ate the grass, dropped their
manure, and left. There were no lasting water sources and so no long-term
residents. But then, a well-meaning development organization decided to drill wells.
Families settled in the area, bringing their cattle. The cattle ate the new
grass, but then they didn’t leave. They stayed, overgrazed and trampled the
topsoil. In the dry season, this good soil just blew away, leaving the ground
infertile. And what’s more, the fluoride levels in the new wells were
incredibly high, causing health problems in the children who drank from them (a
common problem around Mt. Meru). When drought struck a few years ago, many
families lost their cattle and their livelihoods. Now malnutrition is a huge
problem in that area just 30 minutes from Arusha. And it’s hard to see a
long-term solution for people who are living in an area where really no one
should live.
As we drew near that area, we began to see a strange haze
and cloud ahead of us. And then suddenly the wind picked up and we found that
we were driving through something of a sand storm. The wind was ferocious
coming down from Mt. Meru blowing west and we could just see all the soil that
was being picked up and blown away. It was a surprising and sobering reminder
of the reality of life there.
Our visit to Longido was primarily to see how our SALT
volunteer was adjusting to her assignment. We had a good chance to talk with her
and her two supervisors at TEMBO Trust, first over tea and then continuing
through the rest of the morning. Along
with the work aspects, we were able to meet the director Paulina’s new baby;
share some jokes with Mary the community organizer; enjoy lunch at the best
(and only) restaurant in Longido; and drop off some healthy groceries for Zoe.
It was a lot to do in a fairly short time, so we ended up being a bit late in
getting back to Arusha.
Rebecca and Sharon got back a bit after 5pm and the kids
were already dropped off at the office. We had a plan for a small Birthday Party
for Sharon. Rebecca had made her famous secret chocolate (beets) cake. We had a
small gathering at the office at the end of the day. I was also given a cake as
my Birthday is this month as well and oddly, as a team we will hardly be
together this month because we are all going in different directions over the
next 4 weeks. (Including our family).
We had a fairly normal weekend with a low-key day on
Saturday. We did get together with some friends for Indian food for dinner. On
Sunday Rebecca led music and I taught Sunday school, so we were both quite engaged.
The service that day was followed by an annual general meeting of the congregation,
which went on several hours. Rebecca was voted onto the church council during
the meeting which she is excited about.
We have a single ‘normal’ week, then we will be heading out
of town to Iringa (about 8 hours away) for a two week Swahili intensive. The
whole family is going so the next entry will be coming from there. (Hopefully
we will have an internet connection.)
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