Mariam Ndegwa is a rainbow baby.
Born after pregnancy loss, Mariam was very wanted. And, even though Mariam’s mother was able to carry to term, she knew there was something different about Mariam before she was born.
“My mom said she was terrified, but she gathered up all her energy because there were already negative vibes from the family about the fact I could have a disability.”
During the birth process Mariam emerged breech (legs first) and briefly suffered lack of oxygen. After she was born, she was immediately taken from her mother and placed in an incubator.
“My mother demanded to see me, but doctors were afraid to tell her I had a disability.”
Due to the stigma around disabilities in Kenya, Mariam’s atypical entrance into the world continued down to the selection of her name. According to Kikuyu tribe tradition, she would be named after her father’s mother. That side of the family, however, rejected Mariam from the moment her disability was realized.
“My disability caused issues with my receiving a name,” Mariam shares. “After my father’s side rejected me, my maternal grandma stepped in and gave me both of her names.”
When it was time to leave the hospital, Mariam’s mother received much unsolicited advice including the repeated admonition Mariam be strangled to prevent additional stigma upon the family.
“Everyone told my mother I did not deserve to be here. They told her I would always be a burden.”
As Mariam describes how her mother refused to listen to the naysayers it becomes clear where her own grit and determination comes from.
“I couldn’t stand and when I went out to play with the other kids so they all crawled on the ground with me! I didn’t feel different, for me in childhood I knew no limitations.”
When Mariam was still unable to stand by age three, her mother took her to see a doctor. 7 months and 6 surgeries later Mariam was able to stand with a walker.
Her mother, cognizant of the challenging life of a Person with a Disability in Kenya, encouraged Mariam to be as independent as possible. Mariam was eight when she stopped using crutches for mobility.
A trailblazer without realizing, Mariam taught the schools in which she was enrolled the importance of understanding accessibility and equity. Whether a student was temporarily disabled by injury or a fellow Student with a Disability, Mariam advocated the importance of inclusion.
Mariam’s life changed for the better when she was referred to SA Joytown Secondary School: a school for Students with Disabilities. At Joytown Mariam received what she now refers to as a dual education. She learned her schoolwork and how to survive life as a Woman with a Disability.
After high school Mariam continued her education, studying counseling psychology. Armed with her degree she was now ready to enter the workforce, but the Kenyan workforce was not ready for her.
“The work world only saw the disability in me not my potential. I could not find a job.”
Three long years later a Joytown classmate reached out to Mariam to share a job opportunity.
“He told me the work was only for Persons with Disabilities and I thought Oh good. Here I will fit in. I had my first paying job. This was my happiest day.”
The opportunity, data entry and training, was connected to the first iteration of what is now Next Step Foundation. It was the first step for Mariam toward consistent and meaningful employment.
“Next Step Foundation and Upili see beyond my disability. I have been given accommodations and the opportunity to do work I would have thought would only be offered to a person without a disability. It is an amazing journey.”
