TALES OF COURAGE: Why my wings remain unbroken

Wednesday October 25 2017

Ms Khanbhai was born with Spina bifida, a birth

Ms Khanbhai was born with Spina bifida, a birth defect that occurs when a baby's backbone (spine) does not form normally as a result, the spinal cord and the nerves that branch out of it may be damaged. PHOTO| WINNIE ATIENO 

By WINNIE ATIENO
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Nafisa Khanbhai knows rejection all too well. She has endured it for the last 41 years.

But that did not break her, instead she has risen to raise awareness about disability among members of her society.

Ms Khanbhai was born with Spina bifida, a birth defect that occurs when a baby's backbone (spine) does not form normally as a result, the spinal cord and the nerves that branch out of it may be damaged.

“I was born at a private hospital in Mombasa. Technology and medicine was not advanced so my parents went through a lot researching about my condition. Doctors advised my parents that I should undergo surgery.  I used to wear callipers. My family and siblings stood by me throughout my journey.”

Due to inadequate schools for persons living with disabilities she was enrolled at Jaffrey Academy.

She said she used to wear nappies while going to school until she was nine years old.

MOTHER CAME AT BREAKTIME TO CHANGE NAPPIES

“There were only two schools for the disabled in the 1980s. My mother used to come at break time to change my nappies. I had few friends due to my condition. I was isolated and couldn’t participate in outdoor activities.”

In January 1985, she was diagnosed with a kidney problem and in November of the same year, she underwent surgery.

“My whole urinary system was changed. To date, I wear a urine bag.”

She said she has received more hostility from members of her society whom she accused of isolating, sidelining, neglecting and shunning persons living with disabilities.

She has urged the society to change their mindset and embrace people living with disabilities by giving them moral support.

“October is national Spina bifida awareness month.  Challenges we go through as persons living with this condition are numerous. Since Spina bifida leads to disabilities the challenging part is to overcome the disability, to come out and stand out from a society that neglects and avoids people with disabilities is miraculous.”

She said every human being was created in the image of God hence no one should look down upon another person due to their deformities.

She bought a tuktuk and modified it to suit her needs due to challenges facing disabled in the Public Service Vehicles.

“We have to shout with our actions to be recognised. We need to change our mindset and see each other as equals. Stop this attitude of neglecting and sidelining people with disabilities.”

FOUNDED AN ORGANISATION

In August 2006, Ms Khanbhai founded an organisation, Dear Diary Initiative Kenya to sensitise people about disabilities and how to help disabled overcome their challenges.

Dear Diary Initiative Kenya helps people living with disabilities with scholarships, footing their medical expenses and offering devices such as wheelchairs, crutches and callipers.

She emphasises on the importance of respecting the rights of people living with disabilities.

“My society is self-centred. We must change our culture as Asians in Kenya. Employ the disabled, consider them as part of the society, befriend and marry them. In African culture, the disabled marry, get jobs, and express their feelings openly. Most disabled people in Asian communities are lonely, they consider us as a burden.”

She has written a story about her struggles,

She has written a story about her struggles, challenges and journey fighting stigma living with spina bifida. The book is titled Unbroken Wings and will be launched in November 2017. PHOTO| WINNIE ATIENO

Her goal is to sensitise as many people as possible about disability especially members of her society.

“My main battle is to turn the entire environment disability-friendly. There are many buildings and structures that are not disabled friendly. Most government installations have elevators but they are not working.”

The organisation is building an orphanage for 37 children in Kaloleni using plastic bottles.

“We are collecting 1.5 litres of plastic bottles at a cost of Sh2 million. We get plastic bottle donations from hotels and many other organisations.”

She has written a story about her struggles, challenges and journey fighting stigma living with spina bifida. The book is titled Unbroken Wings and will be launched in November 2017.

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