From Our New Book ‘Nothing About Us Without Us’: Introduction
Poverty and Disability: Survival Comes First
Persons trained in the field of rehabilitation, as in other fields, tend to see people’s needs in terms of their specialty. A rehabilitation worker, on seeing a disabled child in an urban slum, may think first of the child’s disability-related needs. The worker may want to foster an “integrated approach,” including assistive devices, access to schooling, and social involvement. But it is essential to remember that for that child and millions of other children, their basic health and survival needs come first.
For Many Children, the Biggest Threat to Their Well-Being is HUNGER
Too often, rehabilitation planners overlook or give too little attention to the economic limitations of the family. As a result, sometimes hundreds of dollars are spent on an orthopedic brace, hearing aid, or on special schooling—only to see the child die from untreated infection … or from hunger.
Quite rightly, many community rehabilitation initiatives are putting more time and energy into helping disabled persons and their families find ways to produce food or add to their income. For example, some programs give a goat, rabbits, or chickens to a disabled child, and help her learn to care for and breed them.
Hard and Soft Technologies
Poverty and disability together put people, especially children, at double risk. Both must be dealt with. People who are disadvantaged for whatever reasons need to join in the struggle for equal rights and full participation in a fairer, more caring society.
Therefore, when we think of “rehabilitation technology,” it is important to consider not just the hard technology of aids and equipment, but also the soft technology of ideas and action that can help disabled persons to survive, meet their needs, and be more self-determined.
The last two Parts of this book look at innovative soft technologies. These include activities and methods whereby disabled people can defend their rights, integrate into society, and learn skills to earn a living and keep the wolf from their door.
Adapting to Extreme Poverty in an African Squatter Settlement
One of the most innovative community based rehabilitation (CBR) programs that I (David Werner) have visited is in a huge shanty town called Matari Valley, in Nairobi, Kenya. This settlement was formed in colonial times by young women from rural areas who worked in the city as house girls and mistresses for white masters. When the girls got pregnant, they were thrown onto the streets and settled in Matari Valley. Today hundreds of thousands of single mothers survive there by brewing illegal liquor, selling their bodies, begging, and picking through garbage. A large number of children are disabled. Many mothers leave their disabled child shut up all day, sweltering in tar-paper shacks. The mothers do this, not by choice, but in their efforts to earn enough to feed their children at least one meal a day.
A CBR worker named Penina, who went to Matari Valley several years ago found that the first concern of mothers with disabled children was not “rehabilitation,” assistive equipment, or schooling. Their worries had to do with food, sickness, and survival.
Once the mothers were earning a bit more income, they could feed their chidlren better and spend more time with them.
So Penina modified her rehabilitation plans. She put the survival and basic needs of the children first. She began by looking for ways to help mothers earn a little income in their homes, so that they could spend more time with their children. At times this meant giving mothers small loans to start selling lamp oil or charcoal. She helped groups of mothers form child-care cooperatives, so that they could take turns caring for one another’s children while the rest sought outside work. She then helped mothers form sewing, chicken-raising and other small work cooperatives to produce an income and have shared child-care where they work.
Once the mothers were earning a bit more income, they could feed their chidlren better and spend more time with them. So Penina began to introduce early stimulation and developmental activities into the child-care groups. From among those mothers who showed the most interest, love, and natural ability, she trained several to help as facilitators, teachers, and neighborhood rehabilitation assistants.
As day-to-day survival became less of a struggle, the mothers were able to devote more time to assisting their disabled children. Penina began to teach the mothers exercises and activities they could do in the home to help their children learn skills and become more independent. As much as was possible given the limited resources, she helped them to access the aids and services that they needed.
As the mothers began to see signs of improvements in their children, their confidence grew, both in themselves and in the potential of their children.
Eventually the mothers, with help from neighbors, built a modest community center (called Maji Mazuri) for meetings, rehabilitation, skills training, income generation, games, awareness-raising theater skits, and child-care. The women also built a cooperative bakery. The initiative for disabled children became a spearhead for community development.