Families and individuals living with cerebral palsy in Mukono District, Uganda, are petitioning for greater support from the government and community. They argue that stigma, inaccessible services, and limited opportunities hinder many from living independently and participating fully in society. This appeal comes ahead of World Cerebral Palsy Day, observed annually on October 6.
Community engagements in Katogo have highlighted the concerns of parents, young people, community leaders, and individuals living with cerebral palsy. For years, some families have hidden children with cerebral palsy due to stigma and misconceptions about disability. However, awareness programs are gradually encouraging families to bring children into the community and recognize their abilities. Despite progress, several communities outside the areas reached by disability organizations still isolate children with cerebral palsy at home.
The Umbrella Cerebral Palsy Network Association (UCPNA) has over 600 members, comprising people with cerebral palsy and their families. The organization works through community structures to help families form groups, build advocacy capacity, and engage local governments and potential sources of support. UCPNA focuses on young people, many of whom are out of school due to inaccessible or unaffordable education systems. The organization provides livelihood training and sexual and reproductive health education.
Access to healthcare remains a significant concern for families. Parents cite expensive physiotherapy services concentrated in urban areas, leaving rural families without regular access to specialized care. In response, UCPNA trains parents in basic physiotherapy exercises and activities of daily living to support their children at home. However, people living with cerebral palsy face challenges accessing health services, including healthcare providers' lack of understanding of their specific needs.
Individuals with cerebral palsy also encounter barriers in accessing sexual and reproductive health information and services. Naggawa Christine, a young woman living with cerebral palsy, reports that some health workers question whether women with disabilities should seek family-planning services. She advocates for disability-sensitive health services, emphasizing that women with disabilities have the same rights to reproductive health as anyone else.
Education is another area where gaps are visible. Students with cerebral palsy describe classrooms where teachers fail to provide adequate attention or reasonable accommodation. Inaccessible physical infrastructure, including buildings and toilets, further limits participation. Community leaders are calling for disability inclusion in public infrastructure, education, healthcare, and government programs.
The UCPNA aims to change attitudes and create communities where people with cerebral palsy are recognized as citizens with rights, abilities, and a meaningful contribution to make. As the world marks Cerebral Palsy Day under the theme "Unique and United," the focus is on moving beyond awareness to accessible services, opportunities, and dignity for people living with cerebral palsy. Community leaders are also appealing to fathers to become more involved in raising children with disabilities.
Key points
- The UCPNA has over 600 members and provides livelihood training and sexual and reproductive health education to young people with cerebral palsy.
- Families and individuals with cerebral palsy cite stigma, inaccessible services, and limited opportunities as major concerns.
- Community leaders are calling for disability inclusion in public infrastructure, education, healthcare, and government programs.
