Ayodeji Ake writes on efforts by a non-governmental organisation, Irede Foundation, to reduce to the barest minimum, stigmatisation and discrimination against persons with disabilities
The joy of motherhood knows no bounds. When a child is born into a family, it’s a symbol of love and divine gift as described by the Holy Books. For the Chigbu family, childbearing was almost not the reflection of joy when little Ireoluwade Beulah Chigbu was born with congenital limb deformity. Mr. and Mrs. Chigbu are career parents who work tirelessly to ensure enough provisions are made for the family, most especially to ensure the best for the children when they arrive. On arrival, Irede’s health condition almost derailed them from their career paths as the parents have to take care of their child and ensure quality healthcare attention especially when they confirmed little Irede’s leg will be amputated.
Recallng the tough times, she said: “In 2009, I gave birth to a daughter with congenital limb deformity so they told us the leg would be amputated. Her right leg was deformed at birth. We were told it would be amputated for her to be able to live. Six days after, we met with a surgeon to confirm if there was any manipulation that could be done with the limb, but we confirmed amputation would be the best way to go. We started going from place to place, traveling from one hospital to another to see if there was another way we could get around it but all proved abortive. Two years and three months after she was born, we did the amputation of the leg. She started using prosthetic leg (an artificial limb that replaces a leg missing above the knee). But the good thing after the surgery was that we started living our life.
“Before the surgery, my husband and I took shifts staying with her and we are both career parents. We go out of our way to manage our child. Before she was 18 months old, we couldn’t drop her for anybody. After 18 months, we had to look for a school for her. The school took the responsibilities of carrying her since she couldn’t stand because of the deformity. She went for the surgery and we were still carrying her because we couldn’t get the artificial leg immediately. About three months after her surgery, she got the first artificial leg and was able to stand and go to school.”
Today, Ireoluwade is 12 years old, and she is one of the bravest. She is a good swimmer even with her one leg, she rides a bicycle, she is doing well academically, and as a matter of fact she is one of the growing models Nigerians should look out for, as she has chosen as a career in modelling.
Also, Seun Ayodeji, who is in her 20s, narrated how she lost her leg in a fatal accident on her way to work. Ayodeji is of average body size, tall, fair and pretty. Everything was working well for her until the accident. She secured a job three months after graduation from the university and lost her leg few weeks after she was employed. That morning before the accident, she saw a disabled person limping but didn’t know she would lose her leg in few minutes. She prayed for death but that didn’t come as it was not her fate.
“I got amputated in February 2017. I was on my way to work on Lagos-Ibadan expressway, on the highway. I sat beside the driver, The driver lost control, but managed to stop the vehicle with the demarcations on the road. Tt affected me because he swiped the vehicle to my side and hit the median. I really couldn’t understand what happened but I discovered I was on the ground. I was still at alert and tried to find an escape route incase the vehicle caught fire. While on the floor I tried to get my balance and at that point I realised I couldn’t find my leg. I felt that was all and was wondering why I didn’t just die, I was pained.
“The good Samaritans helped. Someone stopped by to rush me to the emergency unit and a woman helped with her scarf to at least stop the bleeding because I was really losing blood. I was transferred to Igbobi and they requested for my leg. When they brought the leg, after proper look, they said they couldn’t fix it so opted for surgery and they cut off the destroyed part. At some point, my second leg was affected but it wasn’t necessary to amputate, but was treated.
“Before the accident, I just got a job. So, it was like starting a new life. My life was going smoothly until the accident. The stigma was there. At that point I actually wished I died because I couldn’t imagine living with one leg. Today, I still thank God for everything so far.”
Today, Ayodeji is one of the successful businesswomen Nigeria can boast of.
Interventions through Irede Foundation
With the focus on empowering the African child with limb loss to live his or her life to the fullest: having equal access to life’s opportunities like every other African child, a non-governmental organisation, Irede Foundation named after Ireoluwade Beulah Chigbu, has given out over 186 prosthetic legs and have engaged over 300 families across Nigeria.
According to the Executive Director, The Irede Foundation, Mrs. Crystal Chigbu, the foundation was established when there were lots of questions on disability, especially limb deformity, appealing for answers and solutions.
“But with what happened to me in those few years, I had lots of questions; questions about how other parents were coping, about how to live life, will she be able to survive? And I had a lot of questions. For every time I ask these questions, I tried to ask people or ask Google to check for answers and truly there were no answers. All I wanted to do at the time was to provide answers. Not answers from a medical perspective but on what I have gone through incase someone else needed to search for these answers so they could read through and see how I resolved my problem. I met a woman who had a son, and she came looking for me like someone had told her about my daughter. She has a son who didn’t have a hand and they had left him at home two years plus. The boy wasn’t going to school and she had shutdown her business as a result of his condition. Another thing is, there were a lot of rumours in her family that she used her son for rituals and she was ashamed of herself. I came to a conclusion that, what took me two to three years to overcome, other people’s life is wasting away.
“What I have been doing over the years is that anyone I see that needs an artificial limb, we try to raise funds because I don’t want them to go through what I went through with my daughter. First, I needed information but there was no information and no education. But here in Irede Foundation, we educate people and provide them with necessary information needed. Irede foundation is nine years this year. We started in 2012. The name came from my daughter’s name: Ireoluwade, Irede is a short form of her name. We, as a foundation, educate, engage and influence, and provide empowerment through giving prosthetic limbs so the children can go back to school. More importantly, what we also do is to inspire action.
“So far, we have given over 186 limbs across Nigeria and we have worked with over 300 families. It’s not all of those that knocked on our door that we give limbs. Sometimes it’s a mental health issue with the parents or to the child, the parents or to the child, as a result of the disability of their child. We do psychotherapy ensuring 100 per cent wellness for their amputee at the end of the day. We have done the physical walk and we are doing it virtually now. We have reached out to over 10,000 persons. We educate them about disability and how to manage it. We have also been running a lot of social media campaigns.”
Speaking further, Chigbu explained the ‘Limb To Care’ concept initiated during the COVID-19 pandemic lockdown last year, was designed to engage the amputees on how to practice personal hygiene through frequent handwashing and wearing of their nose masks, most especially children with one hand or without hands.
“There is also an initiative ‘Limb To Care’ that we just kickstarted. Prior to COVID-19, we had a lot of our amputees impacted because we engaged them. We have children with one hand and they need to wash their hands and sanitise regularly and we also have children that don’t have hands and they need to wear their mask. We did some traditional media awareness so that the people that really need us will get to hear about us. We do schools’ awareness programmes. Base on the children that have passed through Irede, we discovered that about 70 per cent of their cases could have been avoided and rather not end up as amputees if they were properly informed,” she said.
Challenges
Chigbu said one of the challenges is funding. She explained that the foundation in its capacity source for funds for the children to get prosthetic legs, which are quite expensive and their families may not be able to afford them. And for those who could afford it, they may not have the financial strength to change the limb(s) as the child grows.
“When you check what causes amputation in general, congenital deformity is about three to four per cent; diabetes is the highest ranking and about 34 per cent. When you look at the cases of amputation in Nigeria, its diabetes is highest by ranking and next is trauma that could have been avoided. When an accident occurs, people believe they can arrange bones and by the time they get to the bone setter, it becomes another story entirely. In respect to funds, the people we give limbs to are people that can’t afford it so we actually source for funds to provide them limbs.
“They can’t afford it because the least they can go for about N1million. Some are more expensive, depending on the amputation. We have limbs we have done for over N2 million, especially for two legs. Yes, sourcing for funds is not something easy but we have partners. We have individuals who are committed to giving and we still encourage more individuals to support this course because getting funds is not easy. We also have corporate partners who are supporting us really big. Truth be told, artificial limbs are usually expensive and it’s something you keep changing as you grow older. Even when some family can afford a prosthetic limb, but changing circle of the limb is quite expensive and so they will need support. NNPC NIPCO is one of our major partners and we are still looking forward to corporate organisation to support us,” she said.
Fighting stigmatisation
She noted that the foundation had in the past eight years committed to fighting stigmatisation by engaging in public enlightenment programmes and increased awareness campaigns on ability in disability.
Chigbu said there were a lot of disability cases but their parents tend to make it private because of fear of how they would be addressed in public.
“There were a lot of stigma and discrimination. Not even for my child but for me. People called me ‘Iya Aro’ (mother of disable) and a lot of unpleasant names. I felt like educating the society would help to change that mindset. I needed a lot of support and I’m privileged that I had it from church, friends and families. I thought about it that like the family I visited in Enugu that didn’t have support. Sometimes, you will realise that the children are adding weight, because if a child is not moving around and is just sitting in one position, they tend to add weight.
“Stigma is one thing we are still fighting and what we have done in the last eight years is public awareness on disability, even when some parents are bold enough and they are not given the opportunity but rather they are discriminated against. What we are doing is creating awareness and sensitising to make them know that disability is not the making of the person with disability. Disability is not a taboo. There are a lot of messages we are putting to the public space to make sure discrimination and stigmatisation can get to the barest minimum.
“The government has made a law for persons with disabilities and we are currently working on that law to help the society understand it. We are organising a programme with the families of the amputees and the caregivers where we will be connecting physically and virtually where they can share their issues. We’re working on it to ensure the ability of the children living with disability is developed,” she said.
Technology Intervention
Founder of Identity Pay, Mr. Lanre Ogungbe, revealed his organisation was working tirelessly to ensure persons with disabilities could enjoy the use of technology for easy payment when they visit stores without their caregivers.
“It is sometimes very hard for them to push the cart themselves, pick their items and still make payments. We believe the processes are too stressful for them. In developing biometric technology, we also put them into consideration, because we know we have different kinds of disabilities, but this is developed for people with limb-loss. They can walk into the stores, pick their items, they will not have to struggle getting their cards. So, we are designing the technology that after shopping, all they will have to do is to smile to the technology to make payments. We will also partner with banks so it will be easier for them to make transactions on Automated Teller Machine (ATM). But with partnership and collaboration with Irede foundation, we will achieve this,” Ogungbe assured.
