Transforming Pain into Purpose: Margaret’s Path to Supporting Families Impacted by Disability

When Margaret son, Issa, was born with cerebral palsy, she never imagined that his condition would inspire her to help hundreds of families in need. Yet Margaret’s passion for disability advocacy took time. Initially, she was overwhelmed by her son’s condition. Not only did the child lack speech, but he also needed help to walk, bathe, and eat. Margaret provided for his needs but struggled to feel love for him. She believed she had done something wrong to cause his disability or perhaps he had been cursed. Her relatives and neighbors felt the same. They began ignoring her and excluding her from social gatherings. Margaret’s husband also abandoned her, leaving her alone to care for her son and other children.

Fortunately, nine years after Issa’s birth, Margaret was invited to attend one of Kupenda’s Disability Trainings for Parents and Caregivers of Children with Disabilities. During this workshop, she learned about the medical causes of cerebral palsy and other disabilities. She also learned more about the rights of people with disabilities and parents’ responsibility to both care for and love their children with disabilities.

A few months after the workshop, Margaret said:

“Resources such as [Kupenda’s Disability] Law Guide and Disability Guidebookhelped me to understand my child’s disability better and its interventions. That understanding relieved my pain and I started to accept my child.”

Margaret started taking her son for physical therapy at Rabai Hospital, which eventually enabled him to sit and crawl on his own. She was so moved by his change and her own transformation that she began supporting other families impacted by disability in her community. She said,

“As a parent, I have been sharing the [Disability] Guidebook information with other families impacted by disability. I have also sensitized my community about the rights of children with disabilities and the need to include them in our community.”

Margaret’s newfound disability knowledge and passion enabled her to educate her husband and he returned home. Through her advocacy efforts, she also started to form friendships with other parents and caregivers of children with cerebral palsy in her community. She eventually gathered these friends to form a parent support group, which they called “Mahenzo” — the Swahili word for “love.” The Mahenzo Support Group members now meet every week to talk about their successes and challenges and provide emotional support to one another.

This year, Margaret also helped the Mahenzo Support Group earn two grants from Kenya’s National Council for Persons with Disabilities to start a poultry project. This project enables them to earn more income to support their children’s needs.

Margaret is now one of Kupenda’s most effective advocates in Kilifi County. She has attended our Disability Types and Counseling Skills Training and will soon be issued a Disability Advocate Certificate. In a recent interview, Margaret said:

“Thank you [Kupenda] for empowering me. I have become a disability advocate for my child and many others with disabilities in my community.”

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