Adversity to advocacy: Obama Foundation Leader works toward inclusion for people with disabilities

Susan Sabano’s fight for people living with cerebral palsy (Opens in a new tab) is a personal one. She knows firsthand the societal, educational, and economic disadvantages that people living with the condition face. That’s why she’s dedicated her career to fighting for equity and equality for people with disabilities.

“I am an advocate from Kampala Uganda, living with a disability known as cerebral palsy,” Sabano shared. “Most communities and mainstream sectors don’t understand the disability, so often people with cerebral palsy are discriminated against, stigmatized, kept indoors, denied access to sexual and reproductive health information, and barred from participating in politics because of the negative attitudes towards them.”

Sabano, a 2022 Obama Foundation Africa Leader, is a project officer at the Uganda National Association of Cerebral Palsy (Opens in a new tab) (UNACP), a non-governmental organization founded by a group of people with cerebral palsy, to empower persons with the condition, advocate for their rights, and participate in inclusive and sustainable development initiatives.

Susan Sabano smiles next to a cocktail table and in front of a painting of an African woman with a harp in hand, orange head wrap and a gold and white patterned garb. Sabano has a deep skin tone and is wearing a pink and gray floral patterned dress.

Susan Sabano poses in front of a painting at a disability advocacy conference.

“I work on economic empowerment and advocacy for inclusive employment of people with cerebral palsy. I conduct grassroot training activities with beneficiaries of people with cerebral palsy and their caregivers on income-generating activities like poultry, piggery, and subsistence farming,” Sabano said. “I also work with the Uganda National Association of Deaf, Uganda National Action on Physical Disability, Brain Injury Support Association of Uganda, and the National Union of Disabled Persons of Uganda to advocate for inclusive employment.”

Cerebral palsy is a common childhood condition in Uganda. Sabano says data collected by the UNACP found that in a few sub-counties within the four regions of Uganda, more than 900 cases of cerebral palsy have been registered.

A radio host in a pink hijab smiles, Susan Sabano smiles, and another radio host with neck length individual braids smiles at the camera. All women are of deep skin tones and are sitting in a studio surrounded by microphones and radio production equipment. — Susan Sabano promotes cerebral palsy awareness at a Ugandan radio show.

“People with cerebral palsy are disadvantaged from the start. Many families can’t afford to pay for required treatment, including the cost of transporting the children to health facilities. Many of them require specialist care, usually over a long period of time, which makes it even more expensive,” Sabano said. “Also, access to a quality education is limited because many children living with cerebral palsy lack the resources and support needed to thrive in Ugandan schools’ learning environment. As a result, access to employment is a major challenge.”

“There is social exclusion of persons with cerebral palsy and this affects their inclusion in the mainstream job market. Many of them have multiple disabilities, including language and communication barriers, which requires them to have specialist care and support to be able to manage in the workplace.”

Still, Sabano remains hopeful that her work will change the course of care and consideration for people living with the condition.

“I am passionate about serving and advocating for a meaningful life for persons with disabilities. I understand that this mission is bigger than myself,” Sabano shared.

Susan was one of hundreds of Leaders in our network who attended the Obama Foundation Democracy Forum in New York City on November 17, 2022. Learn more about the event.