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I never felt alone, as a girl with a hearing disability

26 June 2019
Shakira making a point during a UNFPA organized Generation for Generation Dialogue that took place at Serena Hotel in Kampala in December 2018. PHOTO: UNFPA/Jonathan Amwesiga.

I am Nabakooza Shakira! I was born and raised in the outskirts of Kampala, a slum called Kawempe in Uganda. I grew up in an extended family. According to my parents, I was born just like any other baby, a beautiful little girl, strong and healthy. Four years later, however, I became ill with a terrible fever which got me admitted for a long period of time. When I was discharged from the hospital, I gradually started losing my capability to hear. By my 5th birthday, I couldn’t hear anymore. 

My loss of hearing, according to a medical diagnosis, was associated with the strong medication, such as Quinine, that was administered to me when I was ill. My parents, having no clue of what exactly could have brought about the tragedy, associated my condition with superstitions. To them, the reliable solution would be to seek spiritual intervention; consulting local medicine men, Church leaders and Moslem clerics, but in vain.

Eventually, I had to accept that I was deaf and that it was my new life’s path. My parents enrolled me at the school of the deaf. At the school, I learnt sign language and I also got the chance to meet other deaf children. As a community we had a common language, shared values, norms, and interests, and for once, I never felt alone. 

However, growing up as a person with disability was a hurdle; people called me names like “Kasiru,” meaning a stupid person. Several times, I was denied the opportunity to participate in some activities and to express myself because of being deaf. I also had challenges accessing day to day information, which did not only limit my access to useful knowledge but also affected my performance at school. As time passed, however, I noticed I was not the only person facing these challenges, other girls with disabilities were facing even worse. I came to learn of many girls with disabilities who were sexually abused; denied education; denied basic needs; their rights abused! Some were even associated with curse and bad luck.


Shakira Nabakooza mobilises persons with
disabilities to join the UNFPA Uganda
"Live Your Dream" Campaign. PHOTO:
UNFPA/Prossy Nakanjako.

The onset of puberty came with challenges

When I hit puberty, my friends and I struggled to deal with growth and body changes such as menstruation, breast development, intense emotions, among other issues that adolescents face. The first time I had my periods, I woke up in the morning to a pool of blood on my bed. I got so scared, as I thought that perhaps a demon raped me in the middle of the night. Another close friend of mine who was also deaf got a recurring illness that both of us had no idea what it was. When I advised her to go to the clinic, she accepted and I accompanied her. The health worker available didn’t know sign language but nevertheless, he gave her a prescription. A few days later, she started bleeding terribly with a lot of abdominal pain. When she was checked by the school Nurse, it found that she had had a miscarriage, none of us knew she was pregnant.

Having experienced such horror at a tender age, I pledged not to let any of my friends and I go through such pain again. I then decided to join the Peer Education Club and the Youth Alive Club at school. At the clubs, I learnt a lot about sexual and reproductive health and rights, knowledge that I also shared with my peers who have disabilities and have limited access to such vital information.

After completing my diploma in Kindergarten and Infant Studies, I became an advocate for women with disabilities. My passion is to ensure that women with disabilities access sexual and reproductive health information and services. I would like to see them acquire education, get employment opportunity, get socially and economically empowered in order to have a good life.

Working with UNFPA

My turning point was when UNFPA Uganda identified my contribution towards the sexual reproductive health and rights (SRHR) needs for girls and women with disabilities during a one pre-conference consultation workshop on Primary Health Care in Kampala. Following that workshop, UNFPA supported me to represent the youth and people with disabilities (PWDs) of Uganda at a conference which was held in Astana, Kazakhstan in 2018. I feel empowered and proud that as a young woman and a person with a disability, I am an inspiration and an icon of hope to my peers.

To date, I have been entrusted by UNFPA to take lead in ensuring that issues of people living with disabilities are included within the SRH, GBV and ADH frameworks and interventions. I take every opportunity to talk about gender-based violence and the need for family planning, every time I interact with persons with disabilities. Recently, I mobilized persons with disabilities to join the ‘Live Your Dream’ campaign and the Generation for Generation (G4G) dialogue. For the first time, we registered an overwhelming attendance of persons with disabilities.

I feel blessed working with the team here to support UNFPA’s efforts to improve and support people living with disabilities access to sexual and reproductive health information and services.

Story written by Shakira Nabakooza