The Reality of Cerebral Palsy in Zambia

In the developed world, a cerebral palsy diagnosis does not necessarily imply intellectual disability. In fact, many individuals with cerebral palsy are incredibly intelligent individuals that are limited only by impaired motor function. Cerebral palsy is caused by brain damage that can occur prenatally, during birth, or shortly after birth. As birthing methods improve and become safer, the prevalence of cerebral palsy decreases (Prevalence of Cerebral Palsy, 2014).

 

However, in Lusaka, Zambia, birthing methods are often far from safe. As we rode in a taxi for the final time on our way to the airport, we listened to a news story on the radio that discussed some of the challenges of giving birth in Lusaka. There is one major hospital that boasts the best birthing facilities in the area – UTH. It has become a status symbol to deliver a child at UTH, which is encouraging because more women are becoming conscious of the need for proper birthing methods and want to give birth in a safe location. However, UTH consistently runs out of beds in obstetrical wards. There is simply not enough space or doctors to serve the increased demand for the hospital’s birthing facilities. As a result, officials have asked that new mothers give birth at local clinics, reserving beds at UTH for difficult births and neonatal complications.

 

Many Lusaka residents called into the radio station in response to the story to share their thoughts and experiences. Few were positive. One man, whose wife had given birth three months prior, said that there was not even enough room in their local clinic for his wife to even lay down while in labor and delivery. Everywhere, people had been underserved due to lack of space and other resources. If both the hospitals and clinics are overfull, where should they turn?

 

While many health issues surround inadequate birthing facilities, one that particularly pertains to Special Hope Network and our work with the organization is the increased risk of disability in the neonate. For example, in the developing world, cerebral palsy is often the result of poor birthing methods (Arens, 2008)). But, in truth, the brain damage that results in cerebral palsy is only the first part of the problem for these children. Their parents and other family members often don’t know how to help them. The more developmental milestones they miss, the less their family feels it can do. In the compounds, children with cerebral palsy are left to lay in bed all day long, and, if they need to be moved, they are tied over their mother’s, grandmother’s, or sibling’s back with a chitenge. Rarely, if ever, are they encouraged to strengthen their weak, rebellious muscles. They become malnourished and their muscles waste away or are so contracted that their joints become contorted and immobile. The sad truth is that it is likely that some, if not many, of these children were not born with intellectual disabilities. However, due to lack of stimulation and engagement, they fall far behind their peers intellectually.

 

Our faculty advisor, Paige Pullen, a professor in the Curry School’s Special Education department, pointed out that it was the children with cerebral palsy that often had the greatest potential for improvements. However, this all depends on early intervention (Special Needs Hope, 2006). Through the implementation of motor exercises and stretching, more control can be gained over muscles. Mobility can be achieved through wheelchairs or other adapted equipment. Education can be accessible with patience, adaptations to curriculum, and augmented communication devices. But this isn’t happening in Lusaka, particularly not in the compounds in which Special Hope Network’s Community Care Centers operate. Yet, it would be unfair to blame the families, for few are educated about their child’s disability before they come to Special Hope. Nor can we blame the schools, there simply aren’t resources to allow them to accommodate for these children. When general education is so limited across the country, we cannot reasonably expect an infrastructure for special education and adaptive teaching methods.

 

As a group, we felt especially overwhelmed by the children with cerebral palsy at the centers, some of whom were as old as 15 and 16 years but could do nothing independently. Some lacked even a spark in their eyes or a smile in response to someone saying hello. We didn’t know where one would begin to help these children. It was heartbreaking. As can be seen in the pictures, some families have been able to access wheelchairs with the help of Special Hope and other NGOs. Some still use chitenges wrapped over their back, even as the child grows into a teen and a young adult.

 

How can we begin to surmount such a daunting challenge? The weight of the problem feels enormous. As fellow humans, we have much more than improper birthing methods to consider. We must teach both men and women about prenatal care, about what constitutes a safe birth, about neonatal care, and about care and resources for people with disabilities. As we spent more time with Special Hope Network, it became clear that there is a great need for service in these areas. Some disabilities can’t be avoided, like Down syndrome and other genetic disorders, and autism. However, by instituting health care facilities that focus on prenatal health, safe births, and neonatal care, perhaps we could stem the number of children born with preventable disabilities, thereby improving the quality of life and potential for success for those children and their caretakers.

 

Two of the children with Cerebral Palsy in the Garden compound.

Two of the children with Cerebral Palsy in the Garden compound.

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This picture was taken at Special Hope’s Resource Center and it demonstrates the adapted chairs that many children with Cerebral Palsy spend their day in while doing work at the center.

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Emily and Lauren working on stretches with the children and their moms at the Garden compound.

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Lauren working one-on-one with a child to stretch out his tight muscles at the Garden compound.

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This picture shows Paxton helping his friend get situated in his wheelchair before leaving.

Arens, L.J., Molteno, C. D. (2008) ‘A comparative study of postnatally-acquired cerebral palsy in Cape Town.’ Developmental Medicine and Child Neurology

Prevalence of Cerebral Palsy. My Child, the Ultimate Resource for Everything Cerebral Palsy (2014). http://cerebralpalsy.org/about-cerebral-palsy/prevalence-and-incidence/

Special Needs Hope (2006). Child Cerebral Palsy Early Intervention Is Critical. http://www.special-needs-hope.com/cerebral-palsy-early-intervention.html

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Molding New Realities

With the papermaking workshop now over and having returned to the US, I have had some time and distance to reflect on what I experienced. Ghana, and the Ashanti region in particular, is a place filled with life, culture, creativity and opportunity.

Market area in downtown Kumasi.

Market area in downtown Kumasi.

Perhaps because I was only there for a relatively short amount of time, I felt a certain sense of optimism among people but also uncertainty. People seem to have a strong sense of identity and take pride in their culture, welcoming those from outside to share. There is a sense that things are on the move and a high value is placed on education. However, there is also a degree of instability. When I arrived, cars were lined up for hours due to a national fuel shortage. The exchange rate was the equivalent of about one US dollar to three Ghanaian Cedis. Over the course of five weeks, the Ghanaian Cedi depreciated so much that one dollar would buy almost four Ghanaian Cedis. Prices changed from one day to the next and businesses had to maneuver accordingly, ordering and pricing goods and services in a constant state of flux. Ebola had become engrained in the national consciousness as news of increasing death tolls entered from neighboring countries. Miraculously, it had not yet entered Ghana.

Open-air studio where workshop took place.

Open-air studio where workshop took place.

As the papermaking workshop unfolded in this context, questions of global health in relation to the project sometimes seemed far afield. However, a dedicated group of about 10 people showed up regularly, eager to learn a new technique and see how something rampant in the surrounding environment could be transformed into something beautiful and useful. For a week, we beat raw fibers from the inside of the bark of the Paper Mulberry tree, made vats of pulp from both the Paper Mulberry and textile scraps, pulled molds to make sheets of paper, and flattened them to dry.

Emmanuel, one of the children of the family I was staying with, and me pounding Paper Mulberry fibers.

Emmanuel, one of the children of the family I was staying with, and me pounding Paper Mulberry fibers.

Kwame pulling sheets of paper from vat.

Kwame pulling sheets of paper from vat.

Gloria pulling molds from vat of recycled textile fibers to create paper.

Gloria pulling molds from vat of recycled textile fibers to create paper.

A simple drying mechanism we set up for the workshop.

A simple drying mechanism we set up for the workshop.

Dr. Amenuke's daughter and son.

Dr. Amenuke’s daughter and son.

More than the papermaking itself, the project was a way for people to come together, step away from their daily routines and let their imaginations run wild. Participants came from a variety of backgrounds. Dr. Dorothy Amenuke and Mr. Kwabena Poku are fine arts professors at the local university, KNUST and Dorothy would bring her two children with her every day. Former MFA students, Frederick Bamfo and Geoffrey Akpene Biekro, also attended. Kwabena Akrasi and James Kweku Duffy are communications students and Kwame Donkor is studying engineering at KNUST. Bernard Coleman was a young man who just finished a year of national service after receiving a degree in horticulture and had traveled from the Volta region to join the group. Niels Staats had emigrated from the UK and was starting an arts non-profit and residency program in Kumasi. Even Gloria, the young woman who helped with the children and housekeeping for the family I was staying with, was able to join after I learned she was interested in textile design. All of us came together daily at the home of Caterina Niklaus and Smart Sippah who provided us with a space in which to work as well as an inspiring model for how to create a living space that heavily incorporates and celebrates the diversity of the natural environment.

Geoffrey Akpene Biekro, aka "Captain," pounding Paper Mulberry fibers.

Geoffrey Akpene Biekro, aka “Captain,” pounding Paper Mulberry fibers.

Kumasi, Ghana

Kwabena Akrasi presses excess water from newly made sheets of paper.

Caterina and Smart's home where the workshop took place.

Caterina and Smart’s home where the workshop took place.

Caterina's attention to detail was prevalent throughout her home.

Caterina’s attention to detail was prevalent throughout her home.

Smart Sippah sharing his plant knowledge with group.

Smart Sippah sharing his plant knowledge with group.

Over the course of the week, Dr. Amenuke and Mr. Poku talked about ways to incorporate new techniques and media into their curriculum. Kwabena and James began to formulate ideas for how to grow a business that would both generate income and responsibly produce a Ghanaian-made product in short supply. Kwame explained some of the mechanics behind the basic machines we were using. Niels imagined artists who might be drawn to a residency in Ghana specifically to build upon their papermaking practice in a local context. Though Mary Hark took a very hands-off approach, providing participants with the basic knowledge regarding the materials and process, she laid the ground for participant-led exchange, collaboration, and generation of new ideas.

Mary demonstrating how Papyrus could be another local plant used to make strong paper.

Mary demonstrating how Papyrus could be another local plant used to make strong paper.

Paper Mulberry branches from which raw fibers were harvested.

Paper Mulberry branches from which raw fibers were harvested.

Kumasi, Ghana

Fried plantains.

Diagrams showing spread of Paper Mulberry.

Diagrams showing spread of Paper Mulberry.

Kumasi, Ghana

Smart demonstrating Annatto (Bixa orellana).

When I think about the biggest impact the papermaking project had, I think it would be its ability to bring people together who might not otherwise meet and introduce them to a new way of working that draws on local materials. Though still operating on a very small scale, the papermaking project has the potential to turn into something much larger. It could take on a variety of forms but will have to be done so in a sensitive, responsible manner. It could operate on a workshop basis, attracting an international audience and contributing to the growing tourism industry in Ghana. Its model could be replicated by innovative, enthusiastic people like Kwabena and James and turned into a business that employs a variety of local farmers, artisans and technicians. Its end product could be folded shaped and sculpted into a whole set of finished goods that could be sold nationally to the many hotels popping up around the country. It could be incorporated into the local curriculum as a means to raise awareness about the implication of invasive plant species and the Paper Mulberry in particular. It could also remain as is, providing a base from which visions can grow and participants can think about how to direct their education, skills and efforts in new ways. Or it could be a combination of these. All are valid and possible and offer unique, long-term contributions to global health.

Dr. Amenuke demonstrating creative use of handmade paper process.

Dr. Amenuke demonstrating creative use of handmade paper process.

Though papermaking will not offer a solution for eradicating Ebola or answering to fuel shortages, it can generate a soft wave that gently pushes people to form partnerships and re-imagine their possibilities. Those who I met over the course of my stay in Ghana who have already been involved are living proof. The farmers who gather the raw fibers from the Paper Mulberry appreciate the extra income and assured us of their continued interest in future work. Gloria called me from Ghana the day after I returned to the US to tell me she had told her mom (who is a seamstress) about the experience and was thinking about its relation to her textile design work. The Ashanti are known for their astute sense of business and also for their strong and lively culture and will undoubtedly find ways to morph the project in ways that make it suitable to the environmental and cultural landscapes in which they operate.

Group shot in front of the studio.

Group shot in front of the studio.

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The Environmental and Social Landscapes of Papermaking in Ghana

As the first CGH Scholar from the Architecture School, I feel a tremendous sense of responsibility to apply what I am learning as a design student to the field of global health. I recently completed my first year in the graduate Landscape Architecture program and have been attempting to find ways to incorporate my interests and past experiences into my studies. The Center for Global Health’s call for proposals drew my attention and has allowed me to pursue a project that I’ve long known I wanted to be a part of.

Abofour, Ghana

After completing my undergraduate degree in International Studies and Studio Art, I spent several years working as a writer and photographer. I discovered many innovative projects and met inspiring people who are taking risks to pursue their passions while also making a difference in the world. One of these people is Mary Hark. I first encountered Mary as a student at Macalester College where she was teaching Fibers. Unfortunately, she left in the middle of my studies when she received a Fulbright fellowship to study Ghanaian textiles. Five years later, we coincidentally ran into each other again at A Better World by Design conference. Mary was presenting the papermaking project she had initiated during her Fulbright fellowship and I was there to write about selected projects being presented. I ended up publishing a story regarding her efforts and would periodically check in for updates.

Kumasi, Ghana

Abofour, Ghana

Abofour, Ghana

Now as a budding landscape architecture student, I am finally joining Mary and her team of collaborators in Ghana to think about the future of the papermaking project. I am particularly focused on the social and environmental aspects of what remains principally an artistic endeavor. In a country where fine arts paper is imported from Europe and Asia, the project has the potential to allow people to source paper nationally and also engages local stakeholders in the process, empowering them with the skills necessary to produce it on their own.

Abofour, Ghana

Moreover, the paper is made from the fibers of the Paper Mulberry tree, an invasive species which has become a growing problem over the years. In 1969, 14 trees were introduced from China as part of a pilot project to test out the potential for developing a paper industry in Ghana. Due to political instability and other complications, the project was pushed aside and the trees were forgotten about. Because both male and female species were introduced, the tree rapidly spread. Now it takes advantage of any opportunity it is granted and thrives in large forest gaps, on abandoned farmland and on roadsides. It causes problems for farmers and is out-competing many native species, threatening ecological diversity when not controlled.

Abofour, Ghana

Abofour, Ghana

As of now, the papermaking happens on a workshop basis, usually taking place about two times per year. Mary works with artists in Ghana, local farmers who gather and sell the Paper Mulberry fibers, and members of the university. The workshops take place in a beautiful garden setting and are open to anyone interested.

Kumasi, Ghana

This week we focused our efforts on setting up for the workshop which included taking equipment out of storage, meeting with the farmers who help with the harvesting of the Paper Mulberry fibers, collecting cotton textile scraps (of which there are plenty!) and picking up other necessary supplies around town. I got to see quite a bit of Kumasi and learned how to navigate my way around town using tro tros, the most basic means of public transport.

Central Market Panorama_72small

Kumasi, Ghana

Kumasi, GhanaTo get a better sense for the environmental aspect of my project, I met with several people from the Forestry Research Institute of Ghana who had conducted research related to the Paper Mulberry. They were very welcoming and were excited to find someone else interested in the subject with the potential for future collaboration. I also found my way to Kumasi National University of Science and Technology (KNUST) to meet with Dr. Hannah Adzraku, a horticulturalist who gave me a better sense of how landscape design unfolds in Ghana. Some of the most interesting projects she told me about involve research related to how phytoremediation is being investigated to as a means to help alleviate the negative effects of illegal mining efforts in the region.

Abofour, Ghana

Kumasi, Ghana

In general, planning anything in advance has been the biggest challenge. I’ve found that knowing someone who knows someone or just showing up and being ready to wait to be the most effective approaches to getting in touch with the people I hope to meet. Through Mary, I have also been introduced an amazing community of people who have chosen to live life differently. Many of them are artists who take a critical stance on life and project alternative visions for the future. I’ve found that many of the issues they address through their work to be quite similar to those people are faced with globally- issues of security, inter-connectedness, identity, meeting basic needs, etc.

OfKob Artists Residency

Though my approach as a landscape architecture student is distinct from those who might come from fields more traditionally associated with global health, I believe it has a lot to offer. Health in its most holistic sense requires us to dream of alternative futures in which we are cognizant of both social and environmental issues and find ways to make them realities. Sometimes doing so involves grand plans and other times it means simply offering an example which inspires others to make changes in their daily lives. I have already met a wealth of people who are working towards these goals in ways both big and small. This week the papermaking workshop begins and I will undoubtedly continue to expand upon my understanding of its relation to global health and how it is impacting the lives of those involved.

Sewing seedpods_72

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