Many discussions about discrimination and abandonment of persons with rare conditions are taking place. I would like to share with you part of my life experience which has just been a series of betrayal, abandonment and discrimination all throughout.
I was born to parents who never understood what albinism was and they were fueled by the traditional myths and misconceptions that came alone with my melanin free skin. I was abandoned at my grandmother’s at that tender young age.
My parental abandonment will not be the last time I am discriminated against because of having albinism. The village began to shun my grandmother and linked her to the different myths and misconceptions surrounding albinism and more so on witchcraft. It was not easy for her to support me, but my grandmother went out of her way to ensure that I got the best in terms of education and social life.
For me, school was hectic and very different from the traditional schooling that others were able to experience. The teachers would not provide reasonable accommodations for my learning despite my numerous complaints, which were always taken as mere excuses for me not liking school or a cover-up for my performance. I would spend much of my school time copying notes from other students and was always last to submit my work. This made many teachers and the other students see me as a failure. Not to mention the numerous cases of ridicule, discrimination and derogatory statements that followed me from home, school and any other public place. I became a loner and distanced myself from people. Amidst sobs, I would question myself as to why I had to endure all this.
My saving grace came only when my grandma was approached by a special school for persons with visual impairment. It was here that I recognized my potential and performed better in my academics. I promised myself to overlook the nay Sayers who thought that I was a failure. True to my determination, I was able to pass secondary education and am currently in University.
After all that I have overcome, I thought “it could only get better”. While in University, I got pregnant by someone who loved me. However, since being pregnant the whispers started. Many people told him that all I would do was get another child with albinism. Some suggested that I look for medication to prevent my unborn child from being born with albinism, despite the fact that there is no preventative medicine for albinism.
The delivery room only heightened the level of abandonment and discrimination that I was to experience. I gave birth to a bouncing baby boy with albinism. The nurses and doctors had zero awareness about albinism and the treatment was so traumatic that I choose not to open up until now. It was perceived as a misfortune or some bad occurrence, which no one had answers to. As soon as the father learned that I had a child with albinism, he abandoned me and has never been concerned with the well-being of the child.
I have raised my child with many struggles since I depended on the well-being of my grandma and other well-wishers to raise that kid to not undergo the challenges I had gone through. To my dismay, the treatment I experienced two decades ago are the same he has to experience. The teachers cannot understand his condition or the reasonable accommodation for him to perform better in class. I have made numerous trips to the school to try to explain, but to no avail. Many have termed him as a failure and his condition can only be better accommodated in a special school. I have been forced to transfer him from several schools and most educators seem not to understand or are purposely ignorant to the situation.
Luckily, I have been able to get him a school where the teachers understand him and he has started showing improvements in his work at elementary school. After transferring him, he is now able to read and write.
I believe that we have a long way to go in sensitizing the service givers on how to treat persons with rare conditions, as well as create awareness in the community to change the perceptions in which they view us. In addition, encourage people with different rare conditions to join self- support groups where they can self- teach themselves, learn more about their conditions, and share their stories, since it is therapeutic. For me, Positive Exposure-Kenya’s origination has taught me a lot on albinism and how to take care of my son and myself. I also want to show appreciation to Boehringer Ingelheim, Making More Health for supporting such a noble idea of having a Rare Disease Day conversation where we can share our stories and learn more about other rare conditions.
How I wish this could be done daily and the series continues to every part of the society so that we can be seen as humans too and not as nothing in the society. I believe that we will soon change the perception and it will start with me.
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