As she settles on her wheelchair to share her story, Debora Nzisa, 34, looks motivated. She is a lady on a mission. She is a singer and songwriter who has produced several songs.
A resident of Mishomoroni in Mombasa, Nzisa is a community advocate. She is currently running a campaign to advance Sexual Reproductive Health Rights (SRHR) services of Persons Living With Disabilities (PWDs) in Mombasa using her music.
This is because, she says, society tends to think that PWDs should be non-sexual. In many cases, SRHR services are withheld because it’s assumed the person won’t need them.
As she opens up about her experience, it is hard to imagine that Nzisa is undergoing stigma related to sexual and reproductive health due to her condition and social norms that are associated with it.
The birth defect
Nzisa was diagnosed with Spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly at her tender age. She has lived with the condition for the past three decades. She says she endured a lot of stigma when she was in school as a result of her condition.
“I was born with the condition and I underwent an operation, but because my backbone was affected, my legs lost strength and I became disabled,” she narrates, adding that after medication, she was told that her legs lengths caused scoliosis — a condition where the spine twists and curves to the side.
She says after several medications and subsequent operation on her legs at Pandya Memorial Hospital, Mombasa, she was able to walk albeit by the aid of crutches. Unfortunately, shortly afterwards she was diagnosed with scoliosis. Often, it shows up during childhood and teenage years.
The condition had affected Nzisa’s mobility and she now moves around on a wheelchair. “The condition affects the urine bladder, so sometimes urine can just flow, so this situation was a hell for me when I was in high school. Sometimes when I wetted myself I could just stay at home, because children laughed at me, this affected my school performance,” she narrates.
She says her experience as a PWD was horrific while in primary school. “My parents helped me a lot, because they understood me, but in school my classmates were taking it as a weakness to me and always laughed at me when I wetted my pants. They did not treat it as a disability, many laughed at me thus affecting my self-esteem,” she says.
Getting enlightened
Nzisa says it’s after getting training from Dream Achievers Youth Organisation that she leant her SRHR rights. She says with the knowledge, she has become a champion for rights of PWDs. Her mission is to change the social norms that shroud the rights of the vulnerable community from accessing SRHR services in public health facilities through her music.
She is now part of stakeholders pushing for the creation and full implementation of existing disability policies in hospitals. She says there is a need to create a friendly environment for PWDs to access healthcare services.
“We need to have sign language interpreters and health providers to be trained or learn how to attend to all types of disabilities. Some hospitals have steep ramps, becoming too difficult to access. We’re calling for mainstreaming of disability services by ensuring there is proper infrastructure that makes it easy for PWDs when accessing healthcare services,” says Nzisa.
It’s under this backdrop that Nzisa says her music targets to pass a message about Gender-Based Violence (GBV) affecting PWDs.
“What inspired my first song about GBV was a situation my friend was going through, where her husband could take advantage of her situation to cheat on her. I felt touched and decided to write a song,” she tells Spice.
She adds, “I am a songwriter and singer and some of my songs are Linda Jina La Yesu, Linda Kombolewa and Roho Karibu. I am also in the process of making more songs,” Nzisa says, adding that her music will change society.
“I liked singing when I was a little girl, because music with a message sinks well to those who listen to it; music inspires and entertains,” she says adding that she plans to do more music that will enlighten people on matters of sexual reproductive health and GBV. All her music has sign language interpreters or lyrics, so that PWDs could enjoy it too.
