Cerebral Palsy is a group of disorders that affect muscle movement, balance and coordination. It is the major cause of motor disabilities in childhood. In Nigeria, children with Cerebral Palsy are looked down upon and they do not have access to the healthcare they deserve. 

Sharing her challenges in raising a child with a disability while lending a voice as an advocate for people living with disabilities, Miss Temitope speaks about life with her four-year-old son living with Cerebral Palsy.

What does a week in your life look like?

That depends. Most of the time, it mainly involves just being at home, taking care of my child because I am a caregiver. So, I am always home, taking care of him, making sure that everything is alright. From feeding to ensuring that he gets his medication on time and also therapy because therapy is a major part of our lives. We ensure that we do two to three therapies every week to ensure that he continues to grow and achieve a milestone.

What do you two do for fun?

Well, mostly we go outdoors. We don’t go out much because of the situation so once in a while I take him outside. He loves trees. He is really fascinated by them. We go out. He sees a lot of plants, trees. We look around, laugh, have fun and come back home.

Can you tell me about him?

My son is a little over 4 years old. His name is Oluwademilade. He lives with Cerebral Palsy and Autism. He still moves about, he is not walking yet but he is trying to crawl, trying to move around but right now, he is still not talking and still not walking but we are very hopeful that with consistent therapy he will definitely improve.

What question do you get asked the most when you two are together?

People stare. Our society can be unfair at times. I find it puzzling that instead of people to ask questions, they would rather stare and the ones bold enough to talk would often ask, “why are you still carrying a child as big as this? He should be walking now. Let him walk.” 

It is not always that I am able to explain the situation, especially to strangers. However, for the people who ask, that  I am a little close to and are, perhaps, not aware, I tell them “Demilade is not walking yet because he has a disability. We are still working on it with the therapy.” 

But the question I get asked the most is; “why are you still carrying the child? He is big now, let him walk.”

How do you react to these questions?

Most of the time, I educate people. I am expressive because of my personality. So, if my child and I find ourselves in a place I am not really familiar with the people and they don’t really know our story either, I ensure that I tell them Oluwademilade is my son. And before they start asking me questions, I explain the condition he lives with, the limitations and the things I am working on to make things better for him. 

Usually, I hear people say “Ah! really! I didn’t even know.” What I have found is that a lot of people are generally ignorant about disabilities.

What has been your biggest challenge in raising a child with Cerebral Palsy?

There are a lot of challenges involved in raising a child with a disability but I would say my biggest challenge with raising a child with Cerebral Palsy has been adjusting and coping with the physical, emotional and financial demands. Also, accessibility and accommodation for peculiar challenges of people living with disability in public facilities is a big challenge.

How did you overcome them?

There is no overcoming disability. What I do at best is trying to understand. Accepting, seeking information beneficial to my child, searching and looking for information that will be beneficial to his everyday well-being. So, I would not say overcoming per se; I would say that just trying to find the balance, finding a coping mechanism with our new normal. 

Is there anything in place that makes living with a disability convenient in Nigeria?

In Nigeria right now, I wouldn’t say there is anything in place to make life easy for People Living with Disabilities. However, some sort of silver lining is that the Lagos State Government appears to be trying in terms of making their public buses wheelchair-accessible. 

Generally though, there seems to be really nothing in place for people living with disabilities in Nigeria in terms of facilities. In terms of institutions specially created and built for people living with a disability, I wouldn’t say that Nigeria is out there doing a lot either. 

There is still a lot to be done. Healthcare is not very accessible for People Living with Disabilities and that too is a major concern, right now we still have a long way to go in terms of finding convenience for People Living with Disabilities in Nigeria.

What can people do to increase sensitisation and make the society more convenient for people living with disabilities?

Inclusion is a very important aspect. Inclusion, showing kindness and empathy, acceptance, inclusion in the workplace, religious centres, inclusive education, identifying and changing some of the myths surrounding disability. Inclusive society because with inclusion, life is a lot easier for people living with disabilities.

With inclusion in the school, in the society, accessible healthcare, buildings and structure with wheelchair-accessible entrances. You go to some banks or business centres, a person with a wheelchair cannot access it because the building was built without people living with disabilities in mind. So, that is also a very huge aspect.

Society will do a lot better for people living with disabilities by inclusion by ensuring that inclusive education is in place.

What’s that one thing you’d like to say about disability for the whole world to hear?

Hmmm. I would say that, as a mother to a child living with disability in Nigeria, life would be a lot easier if we had access and inclusiveness. 

Access to healthcare. Access to subsidised medication for our children because most of the medications are compulsory but not very affordable. Access to quality and inclusive education. 

It will be a lot better for People Living with Disabilities in Nigeria to have an institution built for them to access all the necessary care that they deserve and need right now.

It is something I always talk about and as a parent to a child living with disability, as a parent advocate, anywhere I go I make sure I lend my voice. I talk, I educate and I leave the place with a little impact with disability information. 

Inclusion in schools, healthcare and all around, showing kindness and empathy and becoming advocates to support People Living with Disabilities. We have so much to do as a society for the lives of people to be easier. 

We all have roles to play!