Cerebral Palsy (CP) is a congenital disorder of movement, muscle tone or posture that can’t be cured leaving CP patients with only the options of long-term treatment including physical and other therapies, drugs, and sometimes surgery. In this report, ENE OSHABA focuses on Uchenna Ogochukwu Madueke, a 45-year-old teacher and author living with the CP, as she shares her life’s journey living with the disability.
There is no better way to describe Uchenna Ogochukwu Madueke, a 45-year-old special education teacher and author living with the Cerebral Palsy (CP) than with the title of her book: Miss Courageous.
Indeed, what else could have kept her alive and going if not courage? She has survived the past 45 years of her life with CP, a congenital disorder of movement, muscle tone or posture due to abnormal brain development.
CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood.
The symptoms of CP vary from person to person, just as a person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care, while a person with mild CP might walk a little awkwardly, but might not need any special help.
Our correspondent reports that Uchenna suffers severe CP as she finds it difficult to walk or maintain balance, she also has speaking difficulties. A conversation with her could force tears down your eyes seeing how the words are so difficult to pronounce and the strength she uses to push the words out.
However, amidst these difficulties she has continued to make her mark in a country where even the healthy and able bodied citizens lament over difficult living. Her story is also in synch with the theme of the 2020 World Cerebral Palsy Day: Make Your Mark.
Uchenna was born to the family of Mr. and Mrs. Madueke on September 29, 1975, and has suffered the disorder since birth following prolonged labour her mother had while trying to birth her.
She still expresses gratitude to God and her parents for letting her go to school when most Nigerian parents who have kids with the same disability lock them up and deny them equal opportunities with the normal children.
“My mother had prolonged labour and this led to the use this obstrical foreceps which caused injury to a vital part of my brain responsible for normal coordination of nerves and muscles. Due to this brain injury I now live with a disability called cerebral palsy. I could not walk until I was 10 years old and even then I still needed assistance to move around.
“My mother played a key role in ensuring early intervention through the right physiotherapy at the right time,” she explained.
Uche narrated life in school as a much younger girl, stating her mother made sure she got a good education and also made her attend a regular school which she said has given her the much needed courage and tolerance to cope.
“I went to the University Primary School, Jos, Plateau state, which was in the 80’s. When I was in school, because of my disability my late mother made sure I had right to education.
“I went to regular school and children were afraid of me while some laughed at me but my mom insisted I continued school besides I never knew anything was wrong with me until I asked my mother and she explained to me that I was different from others and that’s why they were laughing.
“Because of my condition I couldn’t walk but my mom employed somebody to assist me, feed me, accompanied me to the toilet and helped me generally.
“In secondary school my mates were friendlier and always willing to help me copy my notes, assist me to toilet and so on. I pushed on until I went to do a Diploma in special education and today I have been working over 18 years as a special education teacher,” she narrated.
She said the fact that she was impacting knowledge and doing her best, in her condition, is her inspiration.
“I wrote a book titled: Miss Courageous to capture this and I’m using the book to create more awareness. In the book, I shared my experience and talked about looking good, why people with disability must dress nicely. I talked about my experience in working and I concluded by giving advice to parents.”
Uche works, who has worked as a special education teacher at Open Doors Special Education for the past 18 years, described herself as “super productive” and never stopped expressing gratitude to proprietor of the school; a white woman married to a Nigerian, Professor Joanne Umolu.
“I owe a lot of my progress to Prof. Joanne Umolu. I have had the opportunity to speak at various events in Nigeria and traveled internationally. My students understand me because I know how to teach them.
“In my school, we take children according to their mental ability and I handle the class with the lowest mental ability.
“I teach my students with music because they enjoy it. The school is owned by a white woman, a professor in special education and learning ability.
“One of my speaking events in Lagos was deemed very impressive by Benola Cerebral Palsy Initiative and this led to them honour me with title of Benola Ambassador.”
Speaking further she said: “I teach children with mental disorder, autism, cerebral palsy and those with multiple handicaps.
“People with cerebral palsy in most cases have normal intelligence because they can understand normally but it is with coordination, movement and speech that they have challenge but they have normal intelligence and can cope in regular school if people understand them.
“Due to the recent Covid-19 pandemic schools have been closed and this had an adverse effect on children with multiple disabilities.
“As part of my contribution to keep these children busy during this period I have initiated a virtual mentoring programme to help parents learn adaptable skills to teach their children at home.”
Poor awareness on CP
She, however, regretted the poor awareness of CP in Nigeria, lamenting that most people including parents, are not aware and so hide kids with the disorder instead of assisting them to achieve something in life.
“They feel that people with CP do not have any potential but they do have potential if given the opportunity,” she said.
The teacher and author used opportunity of the World Cerebral Palsy Day to create awareness using the media as she said it was a day worth celebrating just like other international days.
“We celebrate other international days, it is a day for a country like Nigeria to create awareness by letting people know that cerebral palsy exits and should recognise and people with the disorder should be well integrated into the society.
“It is worth celebrating so as to create awareness because parents with such children lock them up not knowing these children have potential.
“I’m a teacher because I went to school so parents should know they have these children can achieve a lot rather than locking them up.”
Uche, who is frail in looks yet very ambitious, said she wants to do more things for herself but unfortunately people were not willing to help, “I will have somewhere to go but taxi will not pick me and some people also do avoid me and whenever they see me they will take another route but I have come a long way and people have started seeing me as I am now, so I use my condition to create awareness to people.
“When I was a teenager and I saw my mates having boyfriends and I couldn’t because of my condition and the fact I cannot do certain things my mates were doing is something I didn’t enjoy. I have grown through the years with this condition and now I can say I’m enjoying myself and living life to the fullest.”
When asked if she wished to be married, she answered in the affirmative stating that: “Right now, if a man comes I will praise God but if none comes I’m happy. Don’t feel bad anymore over situations I cannot change. Marriage is not a do or die affair, it’s not weighing me down and I thank God.
“My family accepted me since I was a baby by providing equal opportunity for me and my siblings, I love myself for who I am and I am an advocate for cerebral palsy. People accept us as we are and parents should give all children equal opportunities and stop calling those with CP witches, they are human beings with a disability called cerebral calsy,” she urged.
In her desire to ensure better life for people with CP, Uche is speaking with the new Secretary of the Disability Commission to let them understand that there are many other disabilities.
“Government only knows only particular disabilities. So, I want to see how I can educate them on other disabilities. There are people with CP that need to be carried along and their needs catered to so nobody will be left out because we are not benefitting anything from government policies.
“The major need of people with cerebral palsy is physiotherapy and they cannot access it. This should be made available for parents to access at a cheap rate. “Another is speech therapy and there should be a course on this in the regular school. When I was in school, I understood everything but when it comes to test and examinations I have to be at the staff office and I’m interviewed because I cannot write fast so couldn’t cope in that regard.
“If schools can provide some special education needs in regular school people with cerebral palsy disorder can cope very well.
“Government can help in creating awareness like advising parents to stop locking children with cerebral palsy but should rather help them.
“CP is an injury in the brain when there is no enough oxygen in the part of the brain during birth. Meningitis can also cause cerebral palsy, in fact anything that damages the brain causes the disorder and this mostly occur in babies or during delivery. It is lack of oxygen in a part of the brain of a developing child not witchcraft as most people call them.
“I’m proud of Nigeria at 60 but I wish people with disability are given better regard and attention to make them feel welcome in the society like we see in developed countries. Inclusive government is always the best.”
Uche, who likes travelling, dreams of broadening and expanding her work. She also wants to create more awareness using different means so as to ensure a better life for people with cerebral palsy disorder.
“I like traveling, I have been to Dubai for holidays with my family, I have gone to South Africa for a workshop and I want to visit New York my dream place,” she said.