Thursday, May 18, 2017

The (begining of a) Story of a Chair

I met Tapiwa in the summer of 2013. Tapiwa is a sweet little girl who lives in Malawi and my friend, Brooke, and I would like to give her a gift this summer... and we need your help. But before we get into that, I think there are a few things I should share with you.

I’ve learned a lot about partnering with organizations who are working towards poverty alleviation in recent years. I’ve learned a lot about ways to support their long-term work and encourage assets already at work in each community. And it’s because of this that I recognize the limitations of material gifts. Material gifts rarely solve problems long-term. Out of the context of relationship, they can even set back efforts that have made strides away from material poverty over long periods of time. So let me start by telling you a little about Tapiwa.
It was late afternoon when I met her. Even in the daze I found myself in after 24+ hours of travel to the country of Malawi, I easily recognized a child with Cerebral Palsy (CP) as she entered the living room of the children’s home that was welcoming us. Tapiwa, or “Tapi” as I would come to know her, sat quietly in her wheelchair as her brothers and sisters ran excitedly around her. I recognized the way she sat, how she placed her hands, the way she held her head- Tapiwa had Spastic Quadriplegic Cerebral Palsy*.

There was a time where meeting children or adults with special needs like Tapiwa’s intimidated me. How to relate to them didn’t come naturally to me- not knowing what to say or what not to say. There was a time when those four words I now easily associate with Tapiwa were as foreign to me as they may be to you now. However, time and relationships over the years have brought me to a different place entirely.

I was curious about Tapiwa that day-we had come to Malawi to work with special needs children, but I hadn't really know what that would mean in the context of Malawi. Different cultures, I had learned, sometimes define “special needs” in different ways. It was pretty clear in the first few minutes of meeting her that Tapi didn’t walk or speak. I wasn’t sure how much she was even able to interact with the world around her. However, when her brothers and sisters started to sing a song of welcome for us, Tapi lit up! Clearly music was her passion and one of her favorite ways to interact with those around her. She smiled and laughed and bobbed her head to the music.

Though her love for music was clear, I left excited to get to know this little girl more as our time in Malawi continued. I learned that she had been left in COTN’s care many years ago. I learned that she had suffered a traumatic brain injury as a young child which left her with severe developmental delays. And I learned that she had a large support system through COTN. I learned that they did whatever they could to get Tapi what she needed. I learned how much her new family loved her.

Fast forward a few years and I now find myself sponsoring this little girl (not so little anymore as she approaches her 16th birthday). My sponsorship started with the profits from a book some friends and I wrote, illustrated, and published. The Tree Keeper is a story about children with special needs in Africa banding together to use their strengths to encourage each other and accomplish a heroic feat.

After using that book to encourage and educate kids and teachers in Malawi, the team that put the book together sat down to decide upon a use for the profits raised in the U.S. from the books. Sponsoring Tapiwa for a year was an easy choice for the group. Tapiwa lives in one of Children of the Nation’s children’s homes that provides for all of her and her brothers and sisters’ needs through child sponsorship. But, after that year ended, the book’s illustrator (Brooke) and I, decided to continue her sponsorship between the two of us.

Which brings me back to the gift we’re hoping to give as I return to Malawi for the fourth time this summer- a gift that stems from years of getting to know Tapiwa and her caregivers. It comes out of an ongoing relationship with the organization that provides for her. It is based on first-hand knowledge of the challenges specific to where she lives and what she does on a daily basis paired with input from those who care for her.

Based on all of that, we are hoping to bring Tapiwa a new form of transportation this summer. Many in the special needs community in the U.S. will be familiar with special needs strollers. These strollers are used for older children and adults with special needs that limit their ability to walk. They are often used in addition to the use of a wheelchair for a couple of reasons, several of which apply to this specific stroller and a little girl with CP living in urban Sub-Saharan Africa.

  • It is built for rough terrain. The terrain of many villages and building entry ways in Malawi are not suited well for traditional, basic wheelchairs (which Tapiwa already uses). This terrain contributes to faster deterioration of the wheelchairs that Tapiwa has been using over the years.
  • It folds up smaller for easier transport. Tapiwa lives in a Children’s Home that provides her with a large and loving family. This means, however, that space in vehicles is more limited when traveling with her large family. Her caregivers are persistent in figuring out creative ways to transport her wheelchair so that she’s able to come along on outings, but a light-weight, foldable chair will help to make this process easier, faster, and safer for everyone traveling with Tapi.
  • The seat is built for safe and comfortable travel over rough terrain. With a padded and weight distributing seat, the bumps and hills will be easier on her skin integrity. The 5-point harness will keep her safely seated upright despite the challenges her tight muscle tone presents.

So, it’s for these reasons and a handful more that we are asking for help to raise money for a special stroller for Tapiwa. The first $900 will go towards the purchase of the stroller and the last $100 will go towards the extra cost of checking an oversized item on the trip over there.

I recognize that this isn’t going to solve every problem that Tapiwa, her family, and her country face. In fact, it’s only going to solve one. However, Tapiwa has a lot of people in her life who are doing great work with all of the other problems, but for now, this is just one of many that we can take off of her plate.

Would you consider joining me? Any amount chips away just a little more and I have full faith that this $1,000 goal can easily be met. Gifts are tax-deductible and can be made on my trip site, here.

Thanks for reading. Thanks for caring. And thanks for considering.

*Spastic Quadriplegic Cerebral Palsy sounds complicated and confusing, but it’s meaning can be broken down pretty simply. Cerebral Palsy affects the way the brain communicates with the muscles and thus affects the way a person with CP is able to move. Sometimes, movements are the only thing affected by CP, but cognitive functions can be affected as well. This is why a person with CP can have anywhere from above average intelligence to severe developmental delays. The word “spastic” helps define how the muscles are affected- CP can make them too tight, too loose, a combination of both, or hard to balance with. Spastic means that they are too tight. The final word, “quadriplegic”, just tells you how many of a person’s limbs are affected- it could be just the legs, just one half of the body, or both arms and both legs. Quadriplegic means that all four are affected.

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