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Toyin Adeshola “I Am Still Standing!”

“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.

Comments

Aminah's picture

An inspiring personality

Nice choice of profile story.
Empathy is not that easy to gain unless one has gone through the same experience.
It is sad to hear how Tonyo had to stand in a lecture hall for an hour while there were many others in the class who had been luckier than her in terms of physical health.
And yes, pretty much anywhere we would see all sorts of laws and policies in place. It all looks good on paper. But on the ground, things are totally different. It takes someone courageous, with a loud determined & resonating voice to make people take notice and actually follow the laws and regulations and implement the policies.

I share a quote i came across just recently:
"Nobody in the world, nobody in history, has ever gotten their freedom by appealing to the moral sense of the people who were oppressing them." Assata Shakur

Just dialogue alone does not things going. especially things that do not affect the mass. Radical movements are important. It is great to know Tonyo went on and founded SAMI.
I wish her all the best. and all the best to you too dear Vweta.

Salaam
Aminah

Vweta's picture

Dear Aminah, Thank you for

Dear Aminah,

Thank you for taking the time to read about Toyin, a woman i greatly admire.

Please permit me to borrow your quote "Nobody in the world, nobody in history, has ever gotten their freedom by appealing to the moral sense of the people who were oppressing them." Assata Shakur because i share the same sentiments.

We must make the change we hope to see happen!

Salaam.

Our Voices make the WORLD PULSate...
Vweta.

olutosin's picture

Thanks for this piece my dear..

Tpyin is great. thanks for raising the voice of people living with SCA...

Olutosin Oladosu Adebowale
Founder/Project Coordinator
Star of Hope Transformation Centre
512 Road
F Close
Festac Town
Lagos-Nigeria

https:

Vweta's picture

Thank you Olutosin for

Thank you Olutosin for reading this article. It really does inspire me.

Our Voices make the WORLD PULSate...
Vweta.

Celine's picture

Dear Sis, Thanks for

Dear Sis,
Thanks for profiling Toyin-- a member of the group who are often neglected in our societies.

Good work! Will write you now. Sorry for not catching up. Hope you'll understand.

Cheers
Celine.

Vweta's picture

Sweet Celine, I am happy to

Sweet Celine,

I am happy to read your comment. I am grateful you took the time to read this.

Our Voices make the WORLD PULSate...
Vweta.

Precious M's picture

Beautiful

Vweta, this is a beautiful profile.
Thanks for sharing.

Precious

My pen speaks

Vweta's picture

Bless you Precious for

Bless you Precious for reading this! I truly appreciate.

Our Voices make the WORLD PULSate...
Vweta.

Stacey Rozen's picture

You did it!

You so did do it, Vweta! Spot on. Highlighting Toyin's quest to overcome demonstrated that it should not be labeled disability. It is being differently abled. Toyin is a strong example and role model for you too. May she inspire you personally xxx

Creatively,
Stacey

Vweta's picture

Dear Stacey! It is always a

Dear Stacey!

It is always a delight to read from you. Thank you for reading this and for noting that Toyin is differently abled. She really does inspire me in countless ways.

Our Voices make the WORLD PULSate...
Vweta.

valerie.bagley's picture

Very informative!

Thank you, Vweta, for bringing our attention to an issue that not many people are familiar with. Toyin sounds like a strong and inspiring woman indeed. Great job on helping fight the problems surrounding people with disabilities by writing a great article on Toyin and the SCD issue.

Vweta's picture

Thank You Valerie. I truly

Thank You Valerie.

I truly appreciate your comment and the your taking out time to read this piece. Toyin is very strong and she does inspire so many people a great deal.

Thank you again.

Our Voices make the WORLD PULSate...
Vweta.

Leigh Anne Kranz's picture

Inspired and Determined

Dear Vweta,

I was VERY moved by your piece. It broke my heart to read the early-life story of Toyin--spending most of her holidays in hospitals, unable to participate in the traditions and travels that help bond extended families. The story of her first day of university classes brought tears to my eyes as she struggled up five flights of stairs to the classroom, only to find that all seats were taken and no one felt empathy-enough to offer their chair.

BUT-- I was so inspired by her determination. Not only did she overcome physical, emotional, and societal obstacles to achieve her higher education goals, but prior to that success, she developed the skills to launch her own catering business--which thrives today!

She is a model of self-reliance, but her focus extends beyond personal achievements. She became a deep-thinking, multi-faceted activist to help others with SCD achieve their life goals, and to raise the consciousness her own country to be more accessible to all of its citizens.

The statistics make it clear that SCD affects a high number of individuals, as well as, family members and communities--everyone in the country is touched by SCD and its effects. You mentioned that only 25% of babies born with this disorder make it to their 5th birthday. Toyin and others with SCD are SURVIVORS...heroes.

Vweta, thank you for sharing this inspirational story with me, and the world. It was clear in your warm and heartfelt writing that you were equally moved by Toyin. You really brought her to life. You did an excellent job with this assignment. I am so glad that you are a journalist and look forward to what comes next. :)

HUG
Leigh Anne

Y's picture

Thank you Vweta, for sharing

Thank you Vweta, for sharing a story of a true hero in a very insping way.
Blessings.
Yvette

Yvette

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