Hope Beyond the Stigma: The Story of Wellington Soza

Knees pinned to a skateboard, Wellington Soza rolls down the street leading a posse of laughing boys. Gently pushed by his brother, Euclides, 10-year-old Wellington cocks his head back, shouting, "Faster! Faster!"

After countless runs up and down the street, Euclides helps his brother onto the seat of his wheel chair. Wellington has cerebral palsy. His leg muscles are stiff, naturally crossing in a scissor-like position, making walking very difficult.

Wellington has been part of the Community Based Rehabilitation (CBR) program for over three years. He lives in Hato Del Yaque, a slum in the province of Santiago, Dominican Republic.

The CBR program provides in-home rehabilitation for children with disabilities. Trained rehabilitation workers, called Promotoras, make weekly home visits and teach the mothers a series of simple rehabilitation exercises to help them track their child's progress.

When Wellington's Promotora, Elena Sena, comes for her weekly visit, he is fresh from his morning bath and eager to start his lessons. Following her instructions, Wellington carefully dresses himself as his mother dutifully observes. Tomorrow she will lead Wellington in his exercises.

With the help of Elena, Wellington has made tremendous progress in developing his motor skills. In addition to dressing himself, Wellington is beginning to overcome the scissor shape of his legs. For 30 to 40 seconds, "I can stand on my own," he says proudly. Every week with Elena, and daily with his mother, Wellington pushes himself to break his standing record. He has been diligent about practicing his separating leg exercises and is slowly learning to walk on his own.

Wellington's improvements have made it possible for him to attend school. For that, he is lucky. A United Nations Educational, Scientific, and Cultural Organization (UNESCO) study, published in December 2012, reports that 70 percent of children living with a disability in the Dominican Republic are currently not in school. Most buildings and schools are not handicap accessible, making it physically impossible for some disabled children to attend classes. Although Dominican law dictates that children with disabilities have the right to go to school, the Ministry of Education struggles to overcome political injustice within the education system.

The stigma associated with disability also makes it difficult for most disabled children to be fully integrated into society. Thankfully, with the help of his Promotora and the support of his mother and brother, Wellington has developed the motor and behavioral skills necessary to be accepted by his peers. But for many children with disabilities, they struggle alone. In the Dominican Republic, children with disabilities are often seen as an embarrassment to their families, or even as a curse from God. Many are hidden, deprived of food, or abandoned by parents who either don't know how to care for them or don't want the stigma of having a disabled child.

Wellington is living proof of the hope that exists for children living with disabilities. The CBR program works to provide the opportunity for children like Wellington to enhance their levels of physical, mental, sensorial and emotional function and improve their quality of life through a grassroots rehabilitation approach. With support and encouragement, as well as community education and advocacy, the stigma associated with disability can be reduced. Children and their families can reclaim some of their lost dignity. Shame and embarrassment can be replaced with confidence, self-esteem and respect.

Wellington radiates confidence, proud of his 40 second standing record, proud of his education, proud of himself.  Rolling down the street on a skateboard, surrounded by his friends, Wellington is just like any other boy -- happy and, everyday, working his way to healthy.

Jun
29
2021
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