Disabled in Africa

My trip to the clinic for people with disabilities

June 8

As most of you know, due to a stroke I suffered before birth, I have grown up with limited use of the left side of my body. In spite of this disability I have always taken for granted my "right" to a normal life, and my parents and community have always provided me with the resources to make this a reality. I never truly realized how lucky that makes me. On Wednesday Dr. Hartman, one of the professors leading my course, approached me and asked if I would be interested in joining a small group of students who would be attending a clinic for disabled people on Thursday. I was apprehensive for two reasons. First, I did not want to miss a day teaching ESL because my time there was limited, and secondly because my own strategy for dealing with my disability has often been to ignore it and only confront it when there was no other option. I usually felt very uncomfortable about drawing attention to my disability. My classmates encouraged me to go and Dr. Hartman explained that people with disabilities in this region are viewed as a burden on the family and often do not have access to education or employment. He felt, therefore, that it may be good for them to see a disabled American who attends university and holds a regular job. The clinic was being organized by the local Anglican dioceses who partners with many NGO's and other churches in the area to connect people with disabilities to the resources that would most help them. The clinic was a referral clinic where the Anglican community development organizers would evaluate each person and recommend to them whichever church program or hospital could best help them.

Our group was being led by Matthew, a Field Representative for a British NGO called Friends of the Children of Tanzania (FoCT), who partners with many local NGO's focused on promoting the rights of those with disabilities. Matthew works for the UN World Food Program and is on a two year sabbatical to work with FoCT. During our rough one hour land cruiser ride to the clinic Matthew mentioned that being born into the American middle class places you around the top 5% of global wealth and during your life you will likely remain between the top 10% and the top 1% of global wealth. In contrast being born in east Africa likely puts you in the bottom 10% of global wealth and if you are disabled you likely drop to below the bottom 5%. When we arrived at the clinic we discovered it was being held behind a church in a dirt walled building with a straw floor. There were about 30 people gathered when we arrived and the first order of business was a meeting, led by one of the female organizers who was a very powerful speaker, to discuss and educate the community on the causes and types of disabilities. At one point she even stopped to chide the local women for not speaking out enough during the question and answer portion. There was some confusion about the difference between a sickness and a disability. When the clinic began, Matthew explained that the cost of a trip to the hospital was very expensive because you have to factor in transportation cost plus cost of stay and they must bring their own caretaker and food because the hospital does not provide food. In addition they also lose their wages and their caretakers wages during the stay. FoCT is one of the organizations which matches family funds to help with the cost of the trip.

I could honestly go on for pages with heartbreaking stories about the things we witnessed during the clinic but instead I will focus on two of the stories to give you a general idea of what we saw. The first story I will tell is about a fourteen-year old girl named Loveness. Loveness was born with legs which were bent and bowed her family saved much money and she was able to travel and receive a surgery which placed metal plates in her legs to straighten them. After the correction she was supposed to return to have the plates removed, but shortly after her surgery her father died and her mother became ill. Because of the lack of income her mother was not able to save the 50,000 TSH (around $38 USD) she requires for the trip, and Loveness has begun regressing and may need yet another corrective surgery. She has also been unable to start school because she cannot make the long walk and she has reached an age too old to start regular primary school without first attending a special school to tutor students before they can reenter the school system. As each of us American students prepared to offer to provide the cost we were told that if the organization did not require the families to contribute they would be flooded with requests and their resources would be spread too thin. They give each family an economic evaluation and determine what percentage the family is able to contribute.

Later in the day the land cruiser went with a man who had arrived to tell us about a child too disabled to make the journey on foot. They returned with a child who appeared to be around one or two years old and was dressed in a baby's one piece outfit. This child turned out to be a seven year old boy who was born with brain damage and had not developed enough muscle. To give you an idea of his size, they propped him up in a chair made from a five gallon bucket cut in half vertically and tied with handkerchiefs for support and his head barely reached the top of the bucket. Through an older woman in the community we learned that the boys father was a drunk who regularly beats the boys 14 year old brother, and the mother ran away after the boys birth. This means that responsibility for the young boys care has fallen to his brother who is malnourished and has been forced to drop out of school to stay home. The Anglican clinic gave a referral to take the boy to a Catholic run center where nuns would take care of him full time and also recommended that the Lutheran church follow up with house visits to check on the 14 year old and hopefully prevent him from becoming another run away street child. I was very impressed with the level of inter-faith cooperation. I would like to become more involved with raising awareness and promoting the rights of disabled people in this region, as well as helping them develop access to health care and education. In the interest of raising awareness, I encourage you all to forward this post on and to check out www.foct.org.uk or help one of the other NGO's promoting the rights of disabled people.

Update: I was told by one of the Anglican organizers that the Anglican Dioceses disabilities program is financially backed by the Anglican Dioceses of Sydney. However the Sydney Dioceses is considering reducing the funding because the want them to be self sustaining, which at this point may not be realistic without outside funding. Also, If anyone is interested in giving to Matthews organization the current method is through http://www.justgiving.com/foct/donate