Rising from her struggles to uplift the community
Posted Saturday, February 2 2013 at 00:00
Teddy Nakazibwe cooks samosas, chapati and small doughnuts to earn a living, but this 40-year-old still reaches out to a special needs community, amongst whom she once had a loved one.
Walking alongside this woman and watching her interactions is an experience that could best be described in superlatives. She is a powerhouse. She marches along paths in Kasangati and Gayaza in two-inch platforms with incomprehensible energy and a positive attitude to match.
Teddy Nakazibwe is one of the few parents that are actively fighting the stigma against children with special needs. Currently, she is a model parent in the Parent’s Network for Centre for Disability and Rehabilitation (CDR-Uganda) and her main role is to reach out to parents of special needs children. The group is marginalised, with few programmes in schools, hospitals and civil society catering to them. These children often require special support for their various developmental conditions which include autism, cerebral palsy, epilepsy and hydrocephalus. The most famous child with “special needs” this year was tied to a tree. She was one of almost 6,000 children suffering from a brain disease with no cure called “nodding disease”.
The number of special needs children is higher and occurs less dramatically if still painfully in everyday homes. Nakazibwe is astonishingly well-versed in the issues and explains the conditions so comfortably you have to ask her what she means by “C.P”(Cerebral Palsy). She has learned from personal experience and working with several organisations. She does not share her story but as she visits family after family, little anecdotes are revealed.
Nakazibwe first visits an elderly lady who is the sole guardian of eight-year-old Dorothy. Dorothy can neither talk nor walk because she has cerebral palsy. She also has epilepsy. As Nakazibwe approaches the home, she calls out a jolly “Dorothy Dorothy”. The girl lays on a mat making unintelligible sounds. “She responds to happiness,” Nakazibwe explains. Eventually, she goes to light the fireplace. She had realised there was no sign of fire in the mud-and-wattle kitchen and when she leaves, there is a fire and porridge cooking. She is like a daughter in this home.
CDR-Uganda uses a home-based system so she visits most of the families in their homes. This way she can teach them how to do the various forms of therapy. For one family, she knows that there is probably nobody at home but she wants to check on Bridget. Bridget, eight, has cerebral palsy and cannot talk. She can now walk, thanks to the continued physiotherapy by the social workers, but because her family continually leaves her alone in the house, her progress is slowed. Bridget needs social interaction as much as any other child, Nakazibwe explains. Bridget comes to the open door. At the end of the visit, Nakazibwe evidently does not want to leave. She fusses around the door, repositions chairs then rearranges the curtain and eventually sighs and tells the now-crying child, “nange nnumizibwa, mukwano” (I am hurting as well, my friend).
And she hurts for every child she meets in a less than ideal condition. “If I had money, I would buy land and a home where I would gather them all and just love them,” she says.
Her personal experience
She eventually talks about her own child. He had hydrocephalus, a condition that causes enlargement of the head due to buildup of cerebrospinal fluid. Although he had a successful operation at CURE hospital in Mbale, he passed on in 2001 at seven years from malaria. With him, she had been exposed to a discriminated world of unending hospital visits with little civil and political support. She resolved to save other parents from this. As she recounts working with many mothers, even before joining CDR-Uganda, she says, “I shared what I had but after the St. Balikuddembe fire, I lost everything and could not help much.”
Later, as she comforts two women, banished from their family home and now squeezed together in a one-room apartment, she says, “I am ashamed to tell you the places I lived in for the love of my child.” The women disclose that they had just moved from a papyrus shade where they lived with their four-year-old child, who suffers from cerebral palsy and cannot feed, talk or walk. She survives on milk and spends her day lying on a pile of clothes.
Nakazibwe reveals then that she had been pushed out of her marital home with her son to live in shacks that leaked, until she was in a better financial position to provide for herself. She tells her story, as she had all the other titbits, to another parent so they would be strengthened.
Here is a woman who rose from her struggles and is now lifting the community with everything she has.