“My life is a life of ups and downs; sometimes more downs than ups,” Toyin says as she describes the challenges a person with disabilities faces in a society as unempathetic towards vulnerable people as Nigeria is.
It was a Friday afternoon when the family of Mr Akinpelu Oludele Adesola; a medical doctor and Mrs Oyebola Olabimpe Adesola; a nurse welcomed their second daughter into the world. She was named Oluwatoyin Ibidunni. Both parents had just returned from Rochester, New York where her father continued his residency in surgery. It was the 1st of September 1965.
Oluwatoyin, fondly called Toyin suspected something was off when she was three years old. As supportive as her family was, she noticed that most of her holidays were neither spent abroad nor in the homes of her grandparents like those of her older sister were but at the hospital instead.
Born with Sickle Cell Disease, she has experienced most of the complications associated with the disease. This has included gall bladder disease, leg ulcers, osteomyelitis of the left tibia and septic arthritis.
Sickle Cell Disease (SCD) is hereditary and affects people the world over but especially those whose ancestors are from sub-Saharan Africa where malaria is common. This gene is passed on to a child if both parents carry the gene. Aptly called sickle cell anemia because of the sickle shaped red blood cells of sufferers, people often experience severe pains especially in their joints, anemia, organ failure as a result of the sickle-shaped cells’ inability to carry enough oxygen to the body.
Recent statistics show that in Nigeria alone, one in every four person is a carrier of the sickle cell trait, an average of a hundred and fifty thousand babies are born annually with this disorder and only 25% of them might make it to their fifth birthday.
As we sat down to talk in her garden, Toyin says although born to parents who are medically inclined, she was not exempted from the pains, depression and short-circuit of information associated with her condition.
Even as a teenager, all she was told was, “You have sickle cell, you will have pains.” She soon realised that SCD was more than just pain. There were times when she was confused and needed answers but could not find any. She recalls attending lectures that were supposed to enlighten persons with SCD. “It was as though the speakers were talking at the persons not with the persons.”
Due to frequent and prolonged hospital stays, she had to quit secondary school. This in no way diminished her desire to acquire a university education.
While convalescing, she learned to make cakes and started her own catering business. This she says gave her a sense of self-reliance and dignity.
“My parents were shocked when I told them I wanted to get a university education. I knew I had to return to school, no matter what it took, no matter how hard it will be. It took a while but they, seeing how determined I was gave me the needed support. I was exhilarated when I gained admission.
I recall my first day in school. I had a class on the fifth floor. I had to take a break on each floor because there were no elevators nor were the stairs designed for persons using crutches. Getting to my classroom, I was disappointed to find all the seats taken; I had to stand for almost an hour as no one volunteered to give me their seat.” Toyin said as she managed a smile.
She finds it especially painful that 27 years after her first day in school, the situation is still the same now as it was then in most universities across Nigeria. “Though Nigeria has policies that are friendly towards disabled people, the reality on ground leaves a lot to be desired. This can be largely attributed to under representation of people with disabilities in the decision making process.” Toyin says.
These issues are some of the reasons why she founded Sickle Cell Advocacy and Management Initiative (SAMI). To address this issue, SAMI collaborates with other NGOs and work with the Nigerian Institute of Architects and Center for Accessible Environment to redesign buildings that are disabled people friendly.
Some of the advocacy tools SAMI employs in promoting understanding of SCD include:
• Project Still Standing, which provides counselling, and support for persons with SCD also provides information for parents, family members and sufferers need at their fingertips.
• Touch a Cell brand promotes advocacy and awareness with music, art, sports, charity events, radio and television talk shows, street tours, online media.
Toyin asserts that two of the major problems persons with disabilities face are: • Employment and • Accessibility. These issues are important and intertwined. Toyin asks, “How can a person reach his or her place of employment without pedestrian bridges, walkways and buses that are not PWD (People with Disability) friendly? You cannot solve one problem without addressing the other.”
48 years after her birth, Toyin is still standing and she wears different caps. She is a graduate of Economics from the Lagos State University, a writer, an entrepreneur who has successfully floated her catering business for well over 10 years and the Executive Director of SAMI. She also sits on the board of NGOs and has recently enrolled at the Pan African University in Lagos where she is studying Social Sector Management.
As I walked out of her garden, I smiled to myself as I recalled the image of this woman who stands taller than everyone else in my mind. I see her as a strong-willed, intelligent, passionate, and determined woman. I find myself remembering the first time I met Toyin when she shared her experience of how web 2.0 has made her advocacy work less costly and more effective at a Women in Media Workshop in Lagos. I feel a profound fondness as I remember this woman I greatly admire.
This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous digital media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.Voices of Our Future 2013 Assignments: Profiles