Cerebral palsy, Basirah narrated her ordeal when she was tagged incapacitated

Basirah Balogun

Cerebral palsy, Basirah narrated her ordeal when she was tagged incapacitated by mentor.

A graduate of Ahmadu Bello University and entrepreneur, Basirah Balogun shares her journey of living with cerebral palsy and how she turned her challenges into a source of strength. In this insightful interview with TEMITOPE ADETUNJI, she reveals the pivotal moments that led her to embrace her condition and find purpose in the face of adversity

Were you diagnosed with cerebral palsy at birth, or did it develop later?

I was born with a congenital disorder called cerebral palsy, which primarily affects my leg but also partially impacts my hand and eyes. I have lived with this disability since birth.

How did your parents respond to your diagnosis?

My parents did their very best, but according to them, there wasn’t a diagnosis of cerebral palsy until I was about 18. I remember the doctor telling me, “I think you have cerebral palsy.” The only treatment I received was the usual physiotherapy, with a focus on my leg to help improve my balance and mobility. My mother would travel with me from Abuja to Lagos for therapy at Igbobi. When the National Hospital and the Women and Children Hospital opened in 2000, we continued treatment there. However, it wasn’t until a doctor mentioned that I had a brain condition affecting my leg that we understood the full scope of my situation. I walked late, beginning at the age of six, and I am now 31 years old.

My parents were very supportive. I am the youngest of four children, and my parents never treated me differently from my siblings.

What were the most significant challenges you encountered growing up with cerebral palsy?

One of the most difficult challenges was my education, particularly attending school. My delayed ability to walk meant my parents were hesitant to enroll me in school early on. When I eventually started school, my mother noticed I had difficulty writing. She would come to my class during breaks to copy my notes and then teach me at home. This was before we fully understood what we were dealing with. My mother would hold my hand to help me grip the pencil, while my father encouraged me to scrabble, essentially to write in circular motions, to improve my hand coordination. I practised this for years, and it gradually improved.

Reading was also a challenge for me, but my mother helped by teaching me the Queen’s Primer. To this day, I suspect I have dyslexia, although I have not been formally diagnosed. To cope, I would read my books and then write down what I had learned on A4 paper to ensure my spelling and grammar were correct. I practised this diligently before every exam to improve my coordination and accuracy. Although I still struggle with reading and focus, I have learned to manage it.

Did you face other challenges in school?

The most severe stigma I faced occurred during my senior secondary school years, not as much in university. In senior secondary school, I was in SS1 and had already learned to write, but I was a slow writer. The difficulty wasn’t just in writing slowly; it was also in the coordination required to look at the board, then look down and write. This is a common challenge with cerebral palsy.

One day, a teacher noticed my incomplete notes and publicly berated me, saying, “Basirah, why is your note not complete?” She then raised her voice, calling me a “disabled child” and insinuating that my parents were wasting their money on me. This was a shocking and painful experience, especially since my mother had always made me feel normal. Hearing the word “disabled” from a teacher was a harsh reality check, and it was one of the worst experiences I had. I went home crying to my mother, who tried her best to comfort me. Additionally, I faced stigma for being left-handed.

In university, however, I faced much less stigma, perhaps because I had mature by then. People would occasionally look at me differently, but I developed coping mechanisms. I also performed well academically, graduating with a 2.1 CGPA, which earned me respect from my peers and shielded me from further stigmatisation.

During difficult times, many people grapple with negative thoughts and emotions. Did you ever experience such overwhelming feelings?

Yes, I did. As the youngest child, I often looked at my older siblings and wondered, “Why me, God? Why didn’t you create me like them? Why am I so different?”

I’ll share a particular incident from my life. My mother did an extraordinary job of ensuring I didn’t feel different, to the point that I wasn’t even fully aware of how my legs looked. One day, I walked into the room I shared with my sister and saw a medium-sized mirror on the floor, left there by someone. When I saw my reflection, I was struck by how different and, in my mind, how “ugly” my legs appeared. It was the first time I truly saw how my legs looked. I knew they were different, but I hadn’t realised the extent. I thought, “No wonder people look at me.” I understood then why I struggled with balance and often fell.

It was such a difficult moment that one day, while washing dishes; I was overwhelmed by a thought: no one was around, and I could just end my life to escape the struggles. But I quickly pulled myself together, reminding myself that I couldn’t do it and that God would question me.

I started researching cerebral palsy and learned that it’s a brain condition, not something that could be fixed with surgery. In addition to cerebral palsy, I’ve developed a bone condition called osteoarthritis. I now teach others how to manage cerebral palsy and osteoarthritis, offering DIY methods and guidance, including advice for mothers with children who have cerebral palsy.

What motivated you to share your experiences on social media?

Initially, I was reluctant to share my story. I didn’t come onto social media to talk about my disability; I was simply trying to market my products. I was selling a product for joint pain, which I developed due to my condition. The pain was severe, and I was on the verge of becoming dependent on medication. After researching and finding a solution that worked for me, I received positive feedback from others who tried the product.

People began encouraging me to promote the product publicly, so I turned to social media. Alongside the joint ointment, I started selling body cream, which I also knew how to make. Then, one day, a woman with a young child who had cerebral palsy like me came across my page. She often spoke about her daughter, and I thought she could do so because it wasn’t her personal condition, it was her daughter’s.

My elder sister, who admired what this woman was doing, told her about me, saying, “My sister has cerebral palsy.” The woman was surprised and asked, “Which sister?” When my sister replied, “Basirah, the one who sells cream,” the woman realised that my joint ointment was related to my condition. She reached out to me privately, encouraging me to share my story. Initially, I felt embarrassed and questioned whether I should; fearing people might think I was mad because cerebral palsy is a brain condition. But the woman’s encouragement made me reconsider.

It was World Cerebral Palsy Day that year when I decided to step forward and share my story. I explained to people that I had cerebral palsy and that it’s the reason behind the joint ointment they were buying. That was the turning point for me, giving me the courage to share my journey on social media.

As a graduate, which institution did you attend, and what was your field of study?

Education in Psychology and Counselling at Ahmadu Bello University, Zaria. I graduated in 2021, although I was supposed to graduate in 2020, but due to the Corona outbreak, I graduated in 2021.

How do you navigate transportation with your condition?

The condition has limited a lot of social activities; initially, that was the problem because you cannot just play around like everybody, and the depression and stigmatisation, but going out, you just have to cope with it because, of course, I just know that with the advent of cars that you can easily book a ride with your phone like a bolt, Uber, etc., it has been easier. Another thing that I have been able to do is master the courage to ask people for help. Even if I don’t know you before, I will walk up to an Akara seller and tell the person to help me cross the road. I do that because I have realised that you have to ask for help.

Do you make good profits in your business?

Initially, when I started the business, I can’t say the business was helping me do much but now it is helping me do a whole lot, I don’t ask my parents for a lot of things, of course, I am still under their roof. I support the home with what I can afford and I take care of myself. I started the business before I graduated from school. Even before the cream and ointment business, I was baking cake. I have always done something. I learned how to bake because I didn’t get admission on time; I make natural fruit juices. The reason why I stopped baking was that I couldn’t decorate because of the stress, it was very painful on my joints. I found myself eating too much sugar in the process of making cake and sugar is not good for me, it will lead to joint pain. I realised that what you eat would make joint pain lesser or more, so I stopped making cakes. I have always wanted to be a business person, I also did tech training for like a year immediately after school.

What are some common misconceptions about cerebral palsy?

The common misconception is that people don’t know that cerebral palsy is in stages. I am a cerebral palsy victim of stage two, which is of six stages, so the person in stage six is in a wheelchair. So, if I say I have cerebral palsy, some people look at me in a very funny way, and there are some cerebral palsy victims that cannot talk; it is the part of the brain that is affected. I am fortunate that the part of the brain that is affected is my limbs, my hands, and my legs. For some people, it is so terrible that almost all their body parts are affected, so people tend to use us as general. It is not a disease but a disorder. Parents need to understand the stage a child falls on and learn how to manage it.

Another misconception is that it is not communicable, and it is not hereditary. Some parents didn’t allow their children to sit with me in primary school; they thought it was an infectious disease.

Are you currently in a relationship?

Yes, I am, but not a serious one.

How do you navigate discussions about your condition when dating or forming new relationships?

Even if the intention is to be friends with someone, I will tell the person, most especially someone I meet online. That is why I put it on my social media bio that I am physically challenged. I won’t wait to be in a relationship with someone before I tell them because I feel not telling them is deceit.

Do you believe that relationships involving individuals with disabilities present unique dynamics?

It presents unique dynamics because I tell myself that when it comes to relationships, that is the only aspect of your life that you cannot control. The aspect of having to allow the other person to accept me to start a serious thing is something I cannot control myself because it has to do with the other person; the other person has his own thinking.

When going into a relationship, do not put all your mind. I have had failed relationships. For individuals living with disabilities, look for mature people. It doesn’t matter if the person is older; if you date someone who is not mature, the relationship will not work. You need to date someone who will understand you.

What advice would you offer to young people with disabilities who are aiming to start their own businesses or pursue ambitious goals?

There are networks of people living with disabilities that exist that you can join; you see a lot of opportunities that can boost your business; as a person living with disability, you need to do a lot of research; you can’t just sit somewhere and be crying because you will regret the years you’ve cried; talk to people; mix with people.

Source: Punch

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Ifetayo Adeniyi

Adeniyi Ifetayo Moses is an Entrepreneur, Award winning Celebrity journalist, Luxury and Lifestyle Reporter with Ben tv London and Publisher, Megastar Magazine. He has carved a niche for himself with over 15 years of experience in celebrity Journalism and Media PR.

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