Tuesday, June 30, 2009

Day 11 (May 30) - Beacon House and the Beach

Today was the hardest day during my entire trip to Africa. I have actually had a hard time blogging about the whole trip because everything culminated in the experiences I had at the Beacon House Orphanage. This orphanage is privately owned and run by an American woman. She takes children with disabilities and illnesses that other orphanages will not. Several of her children are HIV positive and several have hepatitis, among other ranges of problems. We arrived at a gorgeous house and walked up onto the side porch, where at least 10 girls were playing with barbies. This was something I had not seen yet and the american influence was very clear!
When we asked how we could help, we were asked to help entertain the younger children who were watching a movie inside. The director of Beacon House had other visitors and we were left with the children until she could finish her business.
These children were the cleanest we had seen yet. They swarmed us, climbing on our legs and arms. We gladly surrendered our shoes and found ourselves sitting on the floor with piles of children in our laps. I had several girls braiding my hair while 3 more fought to sit in my lap and another paraded in my shoes. I looked around the room and everyone else had their own little group to entertain. We were all having a great time playing in the clean, cool house.
Then, I turned around to see a baby crawling towards me. He came out of nowhere and crawled right into my lap. Well that is where he would stay for the rest of our visit. All the other children were spilling toys while I made sure the baby didn't eat any of them. This little guy was mouthing everything and needed constant attention in the mess of activities. I had not seen him smile until I turned him to face me. He studied my face for a moment, then touching my chin, started to laugh. Up until now, all babies had been terrified of me and this was a nice change!
Once the director was finished with her business, she took us to a classroom to talk. She carried the baby with us, whose name I still did not know. She handed him off to Meredith and started to tell us her story. Of course, I don't remember everything the director said, but I remember exactly what he was doing the whole time. Getting squirmy, Meredith was instructed to put him on the floor. The baby immediately went for a piece of crayon but I was faster! I let him explore for a minute and then put my hands down to see if he wanted to be held. He crawled straight to me and climbed into my lap. As I was rocking him to sleep, the director told us about many of the village customs. Many villages consider twins to be evil and require a ritualized killing. The twins are placed in a tent with heavy incense, so thick they choke on the smoke. If one infant survives, it will be drowned. Many villages also consider the 3rd born in every family to be evil and therefore these babies are killed at birth. In addition, there are not many children with physical disabilities or birth defects in the villages because they are killed at birth. These defects are seen as evil. In many cases the doctor or midwife will drown the baby in a bucket of water just after being born. In other cases, mothers will leave the children by the river. The myth is that these "spirit children" turn into snakes, but we know what actually happens.
The baby's story was different. This 1 year old child, now sleeping in my arms, was not born with a physical disability or disorder. His mother gave him to the Osu Orphanage where he was sexually abused at the age of 6 months. The women at the Osu Orphanage tried to say that a 5 year old was responsible. However the hole suggested otherwise. They then tried to blame it on the Western volunteers. However, they were only protecting one of their own.
Fortunately the baby left that government run orphanage and is in a much better one now. However, his mother is still alive but doesn't want him after he was abused. It was explained to us that he may never be accepted by his family but he would be difficult to adopt out because his family is still alive.
Usually babies in orphanages go to Ghanaians to adopt, but they will not want him. He is tainted according to their culture. This baby will carry the trauma for the rest of his life although he may have been too young to remember it happen. A sound, a touch, or a word may one day trigger these feelings to resurface and he needs to be with a family that is willing and able to handle it appropriately.
Apparently rape is a common occurrence in villages. The director informed us that 4 out of 5 of her orphan girls around 8 yrs old have been raped and are able to explicitly describe the experience. Girls are customarily raped between the ages of 7-9 years while on their way to fetch water for their family. Girls are instructed to travel in groups or take a boy with them. Obviously, this does not always protect them. On the other hand, sodomy is not so common. Homosexuality is a huge taboo in Ghana and conversation on the topic is often forbidden as well. Therefore, the baby's rape carries much more taboo weight than the girls'.

It was truly horrifying to me to hear these stories. I think it was even worse to have this precious, gorgeous child peacefully asleep in my arms. My arms were aching under his weight, but I only held on tighter. He deserves all the love the world can give him after everything he has been through in his life already.
As we left, I handed the child to the director, and felt his hand gripping my shoulder and then his fingers trailing my arm as he let go. It was heartbreaking. I was at the orphanage for about 2 hours and I had fallen in love with this amazing little boy. I refused to take a picture with him because I knew he and his story would haunt me, and I did not want to obsess . . .its been hard.

This afternoon we went to the beach where we ate lunch, played on the rocks and collected shells with Eric and Felicia Annan's daughter Euphralia. We then went back to the Tadakwashi market where I bought jewelry, a djembe drum, and souvenirs/presents for friends at home. The Tadakwashi market is a bit less than the Macola Market and helped me refine my bartering skills. However, the baby was constantly on my mind.

Day 10 (May 29) - The Accra Rehabilitation Center

This morning we walked to the Accra Rehabilitation Center near our hotel. This is a government run institution for men with disabilities. They are supposed to get government funding to continue providing services, but this has not been the case. The center is run by Tingo, the director, who has dedicated his entire life to the residents. He works 24/7 without pay, help or respite. He earns a small salary without overtime. However, his outlook is positive and he believes things will get better for "disabled persons." He stated, "if you are not god fearing you cannot do this work for long. If you treat individuals with disabilities well, then you will get something." Even without a salary, he has job satisfaction with all that he can do for his clients. He provides for them which makes him happy. Tingo is truly inspiring.
He explained to us that they do not get any money from the government. Therefore, he has to require clients to pay about $40 Ghana cedes for 1 year. Most individuals are unable to pay. The enrollment, or way of admission, is such that individuals cannot just walk in the doors. They have to visit the social welfare office where someone will then write a social welfare investigation report. In this report, the individual must provide information dating back to prenatal care. Obviously this is not always possible....
They also need to know how the disability occurred, family relations, environment, and all personal information. Then once this report has been filed, the individuals must get a full medical report from a government hospital. Visits to the doctor or hospital are often very expensive and many of the people have no way of getting there.

The clients of the Accra Rehabilitation Center (ARC) must have a person backing them who can be available to come to the center to help with their personal care. This is not a dumping ground and clients are expected have outside support. Many people do not have families and have been begging on the streets previously. These individuals are instructed to find a fiend, organization or anyone to sponsor them. This method is due to the fact that if they have nowhere to go when they leave the ARC then it is defeating the purpose of the center: to train individuals for jobs.

Many beggars with disabilities make enough money to send their kids to the best private schools and care for their spouse at home. So if they remove them from the street to complete the 3 year program at the ARC, who will care for their families? This is further complicated by the fact that at spouses and children cannot stay with their husbands during the 3 year stay. Spouses must learn to function independently without anyone to help in case of a divorce, death or illness. Spouses are expected to do everything on their own while the men are at the ARC.
An additional challenge at the ARC is the lack of staff. There is no money to hire employees to help in the areas that they may need help (such as ADLs). Therefore, friends, spouses, hired workers must come each day to help with bathing, toileting, etc. An there is no training for families while men are at the ARC or during the transitional period. The director is the only professional on the premises and he states that the goal for the men is learning how to care for themselves as best as possible. The reasoning behind this is - if the men cannot do anything at home then they are worthless to their families. With the training they get at the ARC, they can function at home. It is simple training but there is no follow up available to graduates of the program.
Follow-up is limited not only by the lack of funds but the lack of transportation. There is not way to get to the families in order to check in on them to see how many are working, or have gone back to begging. Therefore data on success rates are unavailable.
The vocational training offered at the ARC includes dressmaking, carpentry and shoe-making. However, many of these trades are becoming outdated. Tingo explained that they need a computer laboratory. He said that all jobs want you to be computer literate and it is easy to get a good job if you can work with a computer. If one of the clients cannot make shoes, but if they have a computer, he can write to others to see what he can do. In addition to being able to use a computer, repair of TVs, radios and air conditioners would be a marketable skill as well.
Tingo is correct in his assumption that as society changes, the vocational training must change too. There are several companies in Ghana that are starting to make their facilities handicapped accessible. Tingo thinks that the individuals with disabilities should get jobs here. If other individuals with disabilities and the general public see that these people can do these things, the hiring will increase and more individuals with disabilities will be inspired to work.
We asked Tingo how easy it would be for us to ship him some supplies – his answer was surprising. Apparently the materials shipped must be addressed to an institution, not to a post office box or to a specific individual. Unless you are a registered company, taxes to pick up packages may cost as much as a car.

Out of anywhere we visited, this facility is obviously the one in the most need for supplies, money and expertise.
After a long morning and another delicious meal at Paloma, Jessica and I decided to go back to one of the markets we had previously visited, Macola Market. This is one of the largest open air markets and yes it is huge. We were dropped off in the middle and I’m glad we made it out! Our mission was to buy more fabric and that we did! I have plenty of fabric now to recover several pieces of furniture in my house and donate some too.

Sunday, June 28, 2009

Day 9 (May 28) - Echoing Hills

Today, Thursday, we travel to Echoing Hills Multi-Purpose Clinic near Medina. We were all feeling a bit burned out and this was very obvious today. This Clinic is a center for individuals with disabilities in which they are educated and learn vocational skills. This is also a center where wheelchairs are sent for the disabled in Ghana. Apparently they have already distributed over 90,000 wheelchairs. However, I was still shocked to see how many wheelchairs they had on site, in storage. In order to get a wheelchair, they claim an individual must have a doctor's prescription. Going to the doctor can be very expensive and time consuming, not to mention how would a person get there if they are immobile? This was hard for me to handle after the number of people I had seen using scooter boards.

Many of the individuals with disabilities that do not have wheelchairs, use a scooter board - a wooden board with wheels on the bottom much like a skateboard. They use their hands to propel themselves along the street. I only saw one person using flip-flops on their hands, the others use their bare hands along the pavement. These are very dangerous as the individuals are seated on the ground and cars cannot see them.

All the residents at Echoing Hills seem very well cared for and the center is located on a beautiful piece of property. They grow their own food, bake their own bread and sell items they make. Several volunteers (one from England, the other from Spain) are there to teach the students. The center requires that volunteers teach the christian doctrine and do not accept non-christian workers. Ghanaians do not like our separation of church and state, they believe they should be one.

Pictured below is a remarkable young woman we met at the center. She had amazing skill precision coloring and writing using her mouth.

Tonight the seamstress who was making our clothing came back with the finished products. Wow. I was very impressed with her skill and creativity. I will definitely be having more clothes made on my next trip to Ghana!!!

Days 7 & 8 (May 26 & 27) - The New Horizon Special School

Days 7 & 8 (Tuesday and Wednesday) were spent at the New Horizon Special School. This school is a privately funded school for individuals with disabilities. They have about 100-120 students ranging in age from 6-52 years old. They have two sections of students, an educational section and a vocational section. In the educational section, individuals are put into 7 groups by age and ability. Both sections of the school are a day school from 8-4. It costs families about $200 per term (3 terms per year)to attend. There is no government funding and they cannot depend on donations. A few of the students have sponsorship but most are able to pay out of pocket. The goal of the school is to put students back into the community and enable them with something to do. However, this is not always received well. Most of the employees and teachers do not have special education training and have learned everything onsite. They have workshops to learn more and yearly training for teachers, but more specialized training would be beneficial.
All the students have either physical or intellectual disabilities. The building is not accessible but the students manage. We were suprised to find that a physiotherapist from the Netherlands works here. She works with students on positioning and exercises.
Students in the educational section take normal school classes such as math and reading. They try to group individuals by abilities and then break it down to everyone's individual level. They also work with students on daily ADLs and take them through various skills to discover their interests. Students who do well get some allowance as an incentive. Then they can spend this at a restaurant.
Students in the vocational section can sell their goods at a store located onsite. The school buys the materials for their dollmaking, basketweaving, cloth dying and woodworking. The school tries to give 50% of the profit on the products back to the students and they spend the money together. Some students have joint bank accounts with their parents.

There are other schools that are funded by the government but this one is not. Everything is funded by the parents. It is important for the students to know their roles in their families and society. Institutions are not helpful because they do not know the social behavior of a family. The best place is at home with their families in the evenings. The students need love from their parents just like their siblings.

The Physiotherapist at the school is trained in the Bobath technique. She told us that there are about 80 physiotherapists in all of Ghana. Her work at the school has been with children with cerebral palsy (CP). She makes chairs and standing frames for the children our of recycled paper. She mentioned that they do have proper equipment here but they may not at home. She is teaching some of the vocational students how to make these chairs so that they can be sold. Her focus is mostly on positioning and exercies. She said that pressure sores are not bad but some of the older children have contractures that started long ago. She described how we need to work in hospitals to catch these individuals early so that we can prevent many contractures. The school has several wheelchairs but not special ones necessary for appropriate positioning. Some children have wheelchairs at home but all wheelchairs stay at the school so they will not be lost.
Many children have nannies to care for them. We later learned that many of these children are cared for nannies most of their lives and rarely see their parents. They are cared for but separated from family life. This level of care is rare in Ghana and is only among the most wealthy families.
We spent Tuesday morning touring the center and looking at what we should bring back with us the following day. Areas of possible treatment included hand positioning, tool use, head support, eye control, communication skills and systems, ADLs, vocational training, increasing hand use, age appropriate activities, specialized equipment for the computer room, adaptations for pencils, rulers and scissors, dysem, slant boards and social skills training.
We spent Wednesday implementing many of these treatments including various adaptations to utensils, pencils, and other tools. We worked on feeding and positioning as well. In addition to our adaptations for the students, we gave an instructional course on all of our adapted equipment and proper transfer techniques. The staff was very interested in what we had to say and how they could improve. Another volunteer privately mentioned to us that nothing like that had been done before but needed to happen.

I had a great time at this school but realized that it is not in the greatest need for our help. Yes, there is a lot we can do to help with what they have already established, but other centers with less funding may need more of our help.

Day 6 (May 25) - HOLIDAY!

Today, Monday, is a National Holiday! We decide to use this day to do our tourist activities. We leave the hotel at 6 am to travel to the Kakum National Park. This is a large rainforest preserve with an old (but hopefully safe) canopy walk. They give us cards to wear (pictured below) that state the obvious...

In the canopy walk, series of rope bridges connect to tree stands and allow people to walk atop the rainforest canopy. Apparently there was a cobra on one of the stands while we were up there...

Next we traveled to the coast to visit the Elmina Slave Fort. This is where the dutch kept slaves to be sent to the Americas. This building was very eerie and it started to storm while we were there. The fort is gorgeous, but holds a horrifying history.

We ate dinner at Paloma, a restaurant frequented by tourists. All 6 of us packed into a 4 person cab for the short ride. However, our cabbie did not speak english and had no idea where we were going. He tried to drop us off in a dark alley before asking another cabbie for directions...we couldn't stop laughing. Once we finally got there, I had pizza...it was glorious. Susan ordered a hot dog in a pita...an amazing masterpiece pita filled with a hot dog, french fries and pickles. A great ending to our touristic day!

Day 5 (May 24) - The Slums

Today, Sunday, we attended Eric Annan’s church (above), Shepherd Baptist Church. They are in the process of building a new church, so we sat next to the construction site under a tent. It was extremely hot, as usual, but all the men wore suits and the women were dressed in floor length dresses made of gorgeous, colorful fabric. The church service was very religious and much more conservative than my Episcopalian upbringing. Faith is a huge part of African culture and an open mind must be kept.

After church, Felicia and her daughter Euphralia, came with us to the slum neighborhoods. Felicia often visits individuals here and does what she can for them. We first met Lizzie (pictured below). She is almost totally blind and has decreased use of her legs. She is from a village outside of Accra but cannot pay to get home. She came to the city to beg but now cannot get back.

Once I took the camera out to photograph Lizzie, children came up to have their pictures taken as well. One of these children was the little girl pictured below. She was afraid of me because she had never seen a white person before.

We then met Moses and George (pictured below). Moses is angry that the government has done nothing for him. He said it is easier and more lucrative to beg on the streets than to learn a trade. He is able to send his children to private school with the amount of money he makes begging in the streets. Moses and George would like to start a dressmaking business but claim they have no help from the government to do so. They may be taught the trade but then no one gives them money to be able to start working on their own. They are both very enlightened about the rights of individuals with disabilities in Ghana and are angry that more has not been done.

We then walked to where we would be assisting with the weekly feeding of local street children. Many of these children are orphans and have to fend for themselves. One 6 yr old is not only responsible for her own survival, but that of her infant sister whom she carries on her back. However, the most amazing part was that these children were so happy! They are filthy, hungry and probably full of worms – but they are happy.

We evaluated several children, in the back of the blue van, including 10 yr old Felicia. Felicia had a suffered a stroke which resulted in left-sided hemiparesis in her upper extremity and lower extremity. She presented with possible contracture in her left hand. Stacey and I traced her hand for a splint to be made if possible.

I have a friend, Dianne, who lives in Richmond and worked with me before graduate school. She is from Accra and her parents still live there. Mr. and Mrs. Azu, and their friend Joe, met with us at the hotel. We were able to interview them about the disability culture in Ghana among other things. It was nice to feel as though I have a family in Ghana and I know I am always safe and welcome in their home.

Day 4 (May 23) - Where the Wild Things Are

Today, Saturday, we returned to the child development center where we had been painting for the past 2 days. Today was the day when the children from the local village would be coming to be read to and play. Unfortunately all of the books we collected took longer to arrive than we anticipated and would get there after we had already left. However, we were also going to evaluate children with disabilities.
Only 2 children with disabilities arrived among the many other children. With the help of Felicia Annan to translate, Stacey, Susan and I evaluated Moses - a teen aged boy with lower extremity paralysis since infancy due to an injection. This would become one of many individuals we would see who claimed their dysfunctions were due to injections they had received. We speculated what this could have been and guessed that many of these children had had polio and the injection saved their lives, but damage had already occurred.
Moses arrived with his mother, who was dressed in her finest clothing and heeled shoes. He could barely walk but used crutches to compensate. We learned they had walked several miles to get to us.
Elizabeth, the second child that came to see us was suspected of having a mild form of Down syndrome.

Many of the school supplies that were generously collected for us by family friends were given to this center. As you can see by the picture above, we had a good time coloring with the children in the shade. Some of the coloring books had stickers in them and I soon learned that these are highly valued! I had to regulate the sticker distribution so that all the children got at least one. Some of us played ball, soccer and Frisbee with the children after we colored. However, the best part was when all the children performed their play for us. Led by a sassy older girl, the group performed “Where the Wild Things Are” for us. The play was fabulous! They had programs for us with the script on it, costumes and scene changes.
While the play was performed, the young girl pictured below sat snuggled in my lap. While many people would cringe at the thought of snuggling a warm body in the African heat, I cherished the moment.

That evening we had a seamstress come to our hotel to make dresses, skirts and shirts for us out of the fabric we had bought at the market.