Everyone has a story and this story guides their views and how they navigate life. I consider myself as having Abraham’s blessings – Mother of a multitude of children. HI am greatly inspired by one of my daughters, Ewokolo Fonkem. She is 22 years old today and has never talked nor walked. Irrespective of her disabilities, she is the happiest and most grateful individuals I have known all my life. She has taught me to appreciate the little things I have always taken for granted and more especially, she has taught me the true meaning of patience, love, and happiness.
She is the reason I am an advocate for individuals with disabilities and most especially an advocate for the underprivileged. Ewokolo just turned one when my family migrated to the USA. She was developing beautifully in most areas but at age one she was still sitting and just beginning to scoot on her butts. Her greatest milestone was holding onto the coffee table trying to stand. She never could stand, never walked nor talked. As a mom, I struggled with the guilt, shame, and frustrations any mother in my situation would have, but was comforted by the hope that modern medicine and my faith in God would alleviate the situation. It did though but not in the way that I envisioned. When she started preschool, I decided to go back to school myself for a second Master’s degree in education. This time my desire was a Master’s in Special Education because I wanted to understand more what Special Education entails and what it means having a child with gross developmental issues. I must say school was very therapeutic for me and helped moderate the guilt and eliminate the shame. Working as a special education teacher in K-12 settings and as a caregiver in a community based residential facility also exposed me to many opportunities to understand the true meaning of human dignity and what true happiness means. The world would be a happier place if everyone, irrespective of abilities and needs, is happy.
I remembered in 1997, at the banks of the River Jordan in Israel, I muttered to myself as I stealthily rubbed the not-so-clear waters of the river on my tummy: “Lord, this is going to be an exceptional baby.” Years after she was born, I have not stopped thinking about this moment and even blaming myself for going abroad to study the teaching of science in Early Childhood at the Golda Meir Center in Haifa, Israel. Yes, my daughter turned out to be exceptional in many ways. She is very gifted. She is the happiest person I have ever known and my whole life revolves around her. She has taught me the true meaning of love, compassion, patience, and forgiveness. Sometimes, I wish she could make her needs known and could go where she wants and whenever instead of having me make those decisions for her. Because of her, I see the world as one big stage where individuals are the main actors, each having a role to play. Her role in my life is beyond measure. I, therefore, believe that the choices we make with the opportunities presented to us influence how we shape and reshape the world. Ewokolo helped me develop my passion for dignifying differences and celebrating the kaleidoscope of the human race.
Growing up, I was not opportune to interact and understand diverse, out-of-the-ordinary, and extraordinary individuals. Looking back, I assume it was not because these individuals were not there, but more, because they were separated from the rest of the community and looked upon as misfits. Further, there were few or no opportunities for them to shine. The education system in which I grew up tracked learners and sifted individuals at every stage of schooling. Only the very gifted and rich ones were blessed with a good secondary/high school education. A child born with a disability was looked at with scorn and blamed for not wanting the mother to progress. Schooling was not even an option. Indeed, they were considered to be responsible for their fate. As I grew older, I started sympathizing with these children. In elementary school, I had a classmate who was crippled on the right leg and by the time we were in secondary school, she had a prosthesis and was able to participate actively in most activities. My poor understanding of biology and the developmental stages of a fetus gave me the false idea that the mothers of such children were probably wearing tight clothes and belts while pregnant and possibly responsible for the deformities of their babies. How I loathed the mothers at that time for doing that to their children!
Then came 1997. I just realized that I was pregnant after I was awarded a full scholarship to study in Haifa, Israel. The course was a rigid one, and the award letter stated that participants would be disqualified if discovered pregnant. One of my confidants advised that I do not throw away the opportunity with the argument that “…no one there would know how you normally look. Go, Auntie (that’s what she called me), you are always very healthy during your pregnancies and by the time you will really show, the semester must have ended … If at all you show while you are there, the worst-case scenario, as stated in the award letter, is that your stay would abruptly end and you will be sent back home … The bottom line, you lose nothing because you could still say you have been to Israel, the ‘Promised Land’. Do not throw the opportunity away, or else you will always see this child as the one who caused it.” That was the smartest idea and one that my significant half also embraced in a land where opportunities were rare and hard to come by.
While at Haifa, my outlook at exceptionalities evolved from sympathy for “victims” and anger against mothers to that of empathy for both the mother and the student. Maybe, in a way, the Almighty Power was preparing me for the task ahead. I visited a self-contained autistic school. The teachers were celebrating a twelve-year-old for uttering her first word. I saw this little six-year-old. She was non-verbal and her gait was a little unsteady. I wanted to take pictures of the students at the institute to bring home, for I had never seen such cases. Tears were streaming down my cheeks as I thought, “How could these mothers smile, get good sleep, or even eat? Why sould the Almighty let this happen? At least, some of the students could have some words if they were struggling to walk or be able to walk if they had no words.”
Today, I am one of those mothers. Surprisingly, I smile, get good sleep, and eat. Having my daughter with the baggage was a mixed blessing to me. As a mother, I weep to see her stuck to a wheelchair, not able to think aloud for herself and make her needs known. At the same time, her condition help me to grow as a person and a professional. I empathize with individuals with exceptionalities because of the firsthand opportunities she happened to have provided for me. I also appreciate all the issues that are taken for granted about giftedness and the need for inclusion. I now understand that because humans possess an essential nature of good and evil, all individuals can be ‘good people’ and are also capable of exhibiting inappropriate behavior. I also understand that all humans are just a few minutes away from being disabled. Therefore, while we are able, we should show love and understand those who are disabled because we may be just be building better services for ourselves.
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