Maria Omare greets me warmly when we meet at Kibera Drive, one of the few major roads in Kibera, a slum in Nairobi, Kenya that is home to an estimated 250,000 residents. “Welcome to Wakanda,” she jokes, referring to the fictional land in the film “Black Panther.”
I’ve come to Kibera to see The Action Foundation, a grassroots organization Omare started eight years ago to support children with disabilities in social inclusion, education, and advocacy.
After wading through series of unpaved, labyrinthine alleyways, we come to a three-story building painted in bright yellow and blue that stands high above the corrugated tin roofs of Kibera. Inside, just past a small foyer, an occupational therapist named Victor Ogula balances an infant on a physioball, stretching the child’s spine as far as it can go. The child wails as his mother looks on.
Mondays and Thursday are occupational therapy days at the center. Dozens of parents bring their children who suffer from physical disabilities of varying severity, including spina bifida, cerebral palsy, and congenital muscular dystrophy.
Omare tells me that occupational therapy days are emotional for her. As gratifying as it is for her to see children making progress on their ability to crawl or walk or stand upright, hearing them scream in pain remains a distressing experience. But she takes solace in the knowledge that every severely disabled child who is getting help is one less child institutionalized in a care home.
According to the last major survey of disability among children in Kenya, conducted in 2016, 13 percent of Kenyan children live with some form of disability. For wealthy and middle-class Kenyan parents, caring for a disabled child, though difficult, is manageable. However, for families in places like Kibera with few private resources or government assistance, Omare’s center serves as a refuge — not just for the children, but also for their often unemployed, financially strapped, and emotionally overwhelmed parents.
Omare founded The Action Foundation in 2010 because she was tired of a pervasive narrative that tells children with severe disabilities, “Your hopes are futile, your dreams are impossible, and ultimately, your lives are worthless.” But she was certain she didn’t want to open yet another care home. She abhors the institutionalization of disabled children that excludes them from society and creates an “out of sight, out of mind” mentality in the public consciousness.
Her focus, she decided, should instead be on helping the parents so that they can provide the best care possible for their disabled children in their own homes among their loved ones.
MMaria Omare’s career as an advocate for children living with disabilities started almost by accident. In 2009, during her second year at Kenyatta University in Nairobi, she volunteered with the Special Olympics as a nutritionist, her area of study. Omare says that she didn’t volunteer out of some noble desire to save the world, but that she was, as she puts it, “significantly broke,” and the position came with a stipend. For the first time, Omare met severely disabled fellow Kenyans, individuals living with conditions like down syndrome, cerebral palsy, and hydrocephalus, a build of cerebrospinal fluid in the brain that causes severe physical disabilities.
The following year, Omare started volunteering at a care facility for the disabled. It was an experience that left her feeling despondent about the quality of care and support the children were receiving in that home. She remembers the place as a kind of warehouse. “There was no joy and happiness,” she says. “No one cared to find out the children’s interests, their passions.”
Omare says she and her fellow volunteers would play with the kids, using educational toys or other games. She noticed that the children were not only happier, but they made noticeable gains in their communication and cognitive skills. However, because they were volunteers, sometimes they would go back to school and when they returned, would have to start from scratch. All the gains they made with the children evaporated. “It’s like they would shelve our toys and go back to default mode,” Omare says of the people who ran that care home.
Omare looks back at her volunteer experience as a turning point. She began to see disabled children as more than just a collection of ailments or a burden to be endured. That realization, she says, “redefined her purpose in life.”
So in March 2012, Omare opened The Action Foundation center in Kibera. She chose this particular place because the need was immense. Her friends and family thought she had lost her mind for wanting to work in one of the poorest and most emotionally difficult parts of the country. At times she even thought the idea was crazy. But she still collected funds from family and friends, adding up to a meager $50 (KES 5000), and she put down a rental deposit on a one-room space. With the rest of the money, she bought a padlock and a mat for the floor. Omare remembers sitting in the middle of the room and asking herself, “What in the world have you gotten yourself into?”
It took several years to get the organization off the ground. She first received a fellowship from Akili Dada, an incubator that nurtures young African women leaders. Before the end of that one-year fellowship, she was able to attract more financial support and learn how to fundraise, and other awards started pouring in. She received more fellowships, and soon after, leading Kenyan newspaper Business Daily included Omare in its Top 40 Under 40 Most Influential Women in Kenya.
With this assistance, she started offering regular play dates for disabled children with their parents and siblings. And recently, she recruited the help of the Maasai Mbili Art Collective, a group of young artists in the neighborhood, to come to the center and teach art to the children.
But there were also more serious systemic and societal issues, and for that, Omare began to enlist the help of other NGOs, educational institutions, and hospitals.
For instance, the Action Foundation Hub has education programs to advance the inclusion of children with disabilities into mainstream schools. Their program Somesha supports teachers to provide inclusive learning environments, while Waridi Girls Initiative provides mentorships and teaches disabled girls about their sexuality and reproductive rights.
PPoverty, lack of government resources, and age-old myths about disabled children as “cursed” have all contributed to a cultural ambience in which these children are neglected, abused, and in some extreme cases, especially in rural Kenya, killed by their own parents.
In September 2018, Disability Rights International (DRI) released a shocking report titled, “Infanticide and Abuse: Killing and confinement of children with disabilities in Kenya.” The report paints a grim picture: “DRI found children with disabilities in overcrowded and filthy conditions, children spending lengthy time in restraints and isolation rooms. [Through] neglect and the withholding of medical care…, children with disabilities are intentionally left to die.”
Omare is quick to point out that her center is not an institution like those described in the DRI report, but rather a community hub where parents bring their children for support. In fact, one of the requirements of the center is that parents must be involved in the daily care of their children.
Involving parents isn’t always easy. Many do not acknowledge that their children have severe disabilities and refuse to seek necessary help as early as possible. Omare tells me about some of the children whose lives were improved dramatically through early intervention, like Lester (not his real name), who at the age of 9 was not going to school because his spina bifida made him unable to control his urine or bowel movements.
In 2013 Omare met an Italian doctor who, moved by her work, vowed to perform surgeries pro bono whenever he returned to Kenya. Through him and other medical connections, the Action Foundation has facilitated 20 surgeries since 2014 — including on Lester, who had a corrective surgery to one of his legs.
The foundation was also able to negotiate for Lester to attend a school that provides education to kids with disabilities. And within the first school term, he was at the top of his class. “What a shame it would have been,” Omare says, “if Lester was kept at home because all he needed was support to be in the right environment that can meet his needs.”
Omare tells me the stories of other children whose lives have been made immeasurably better through the center’s early medical intervention and treatment. Since 2012, the foundation has helped almost 240 children with various needs, large and small. She rattles off the names and accomplishments of some of those children with the familiarity and pride of a mother. In fact, she often refers to them as her children.
AAs gratifying as the work is, Omare says it does take a toll. She confesses to a tendency to carry on her shoulders the weight of the parents and children the center serves. But it’s a weight she carries with poise and good humor. Speaking to her, I was struck by her bubbly energy and optimism in the face of so much hardship all around her. That, she says, comes from the “belief that I was placed in this universe for a purpose. I’m Catholic. I go to daily Mass just to balance myself before I start the day.”
As much as Omare loves her work, she wishes her role wasn’t needed. She believes the government should be responsible for these children, but that it has largely left that responsibility to NGOs like hers. “How do we get the government to support organizations such as ours?” she asks herself. “How do we get the government to collaborate with us to provide more support to parents?”
One of the reasons Omare wishes she had more support is that, despite the successes of the past few years, funding remains a near daily battle. “We still worry about paying the bills and sorting out the basic needs of the kids,” she says. To supplement donations from Kenyan citizens and various grants, the center started some income-generating activities of its own, such as making and selling crafts and renting out the hall on the third floor of the building for community events.
However, these funding challenges don’t damper Omare’s enthusiasm for the work. She has big dreams for The Action Foundation. She wants to make the center in Kibera a national incubator for innovations on disability issues.
Helping bring about real transformation in the lives of children and youth with disabilities is, Omare says, what inspires her to keep going even when it is so tempting to give up. Whenever she accepts an award or speaks at a conference, she feels like she is speaking for a whole community of children and their parents. “I don’t speak just for myself,” she says. “Their voices propel me.”
Read more from our series on Equity in International Education.
