For Pelemo Ava Nyajo, living with a disability began at the age of two when her mother noticed an unusual curvature in her leg bones. After several misdiagnoses, doctors eventually identified her condition as polyostotic fibrous dysplasia, a rare and degenerative disease that weakens bones, causing deformity, fractures, and chronic pain. This diagnosis, however, came after years of uncertainty and failed treatments. 

Over the years, she has undergone eight surgeries in an attempt to correct the deformities. Today, her crutches are her most reliable companions, carrying her everywhere. At 22, Pelemo has made her mark in the development, public, and creative sectors. Currently interning with the British Council and working on advocacy with Plan International, she actively challenges the barriers faced by disabled individuals, particularly in spaces that remain inaccessible.

“I support work across Sub-Saharan Africa, learning from diverse experiences. It’s both fulfilling and eye-opening,” Pelemo told HumAngle. “But navigating social spaces remains overwhelming, especially when accessibility is a constant struggle. At my workplace, however, inclusion is encouraged.”

This drive for inclusion led Pelemo to launch ‘Disability with Pel’ in Jan. 2024, an Instagram platform dedicated to mainstreaming disability and normalising conversations around it in Nigeria. With over 400 followers, her growing community engages in advocacy that highlights lived experiences, aiming to shift societal perceptions of disability.

About 29 million Nigerians live with some form of disability, according to the World Health Organization (WHO). Despite this statistic, understanding remains limited. Pelemo is changing that by sharing personal stories and creating art that challenges prevailing misconceptions. “I want to influence people’s perceptions of disability,” she said. “I want disability to be seen as normal, and those like me, recognised for our humanity. Art is my medium for this change, from videos to poetry.”

“We need allies,” Pelemo said. “Able-bodied people are the majority, and we need their understanding and support.” Chinelo, one of the platform’s followers, echoed this sentiment: “I’m so happy for this account… It is educating most of us.”

Why it matters 

Her journey has not been without hardship. Pelemo recounts her experiences with the medical world, where she often felt treated as little more than an experiment, which has led to her deep resentment of hospitals. Many doctors, she explained, are ill-equipped to understand her condition, resulting in frequent medical gaslighting and misinformation.

“Why would a doctor say, ‘Fat girls aren’t beautiful?’” she exclaimed. 

The emotional toll is just as devastating as the physical pain. “It’s so sad that mental health isn’t a very prominent topic for chronically ill or disabled people in Nigeria,” Pelemo told HumAngle. “I wish my doctors also recommended therapy because I was dealing with a lot mentally. After realising I had a chronic illness, I was bullied, discriminated against, isolated, and in a constant state of despair after my surgeries.”

She lacked the resources to cope with the pain of being isolated from her peers due to her appearance, and she acknowledges the difficulty of living in a world steeped in stigma. Recently, Pelemo co-founded Movement Beyond Walls, a campaign to bridge the gap between people with and without disabilities through social inclusion and art.

The law and its gaps

Section 1, Part A of the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018, states that individuals with disabilities should not face discrimination from any institution or individual. Those who violate this law may face imprisonment for up to six months, a fine of ₦100,000, or both. Corporations found in breach may be fined ₦1 million. However, for Pelemo, such legal provisions often remain theoretical, as societal attitudes largely remain unchanged. 

“Sadly, I had to come to terms with the fact that provisions weren’t always made for me,” she told HumAngle. “And perhaps I couldn’t connect with the world as I should have because there was no space for me. There’s a lot of fear even with being brave-like people staring or being the subject of pity or discrimination. Each day, I go out knowing I have to fight this stigma.”

Some of Nigeria’s cultural beliefs fuel their approaches to things like disability and chronic illnesses. Many view these conditions as curses or spiritual afflictions, something that Pelemo strives to address through her platform.

“There are a lot of stereotypes and misconceptions that portray disability as a taboo or a fate worse than death,” she said. “It’s a cause for concern because when your beliefs, learned through socialisation, supersede another person’s humanity, it can fuel discrimination or misunderstanding. People feel entitled to our stories or deem us as less than human; it’s very disturbing, to say the least.” 

Pelemo hopes for a future where disability isn’t just portrayed as ‘cool’ in the media, but where society’s perceptions evolve to reflect the holistic reality of people like her, who live with disabilities and chronic illnesses every day.

More stigma while growing up

In secondary school, Pelemo faced significant discrimination from her peers. Some incidents were so painful that they remain etched in her memory. “Once, I was in a wheelchair, and somebody teased a boy I had a crush on about me being his wife, and he said, ‘God forbid, is that a curse?’ which made me realise how people view me and my disability,” she recounted. 

Such sentiments were echoed frequently, and it was hard for Pelemo to accept that others didn’t see her as someone who could be loved or married because of her condition. Despite this, she met some incredible people who challenged this belief, and she hopes to influence more people to adopt such perspectives through her online communities.

“There were times I was treated more like an illness or prayer point than a person, and sometimes family members would make subtle jokes to my mom about my disability,” she said. Pelemo was 20 years old before the reality of her condition first settled; even though she was aware that her condition had no cure, she never really came to terms with it. “I was living in the illusion that I would one day become like other girls. I even started practising walking around without my crutches,” she told HumAngle.

She remembered the questions people would ask about when she would let go of her crutches and try to move around independently. At the time, this impacted her belief, leading her to think that maybe, if she tried hard enough, she would be able to overcome her disability. 

“Even when I feel more pain, I will tell myself to keep going because pain is part of the healing process,” she said. But after one particular doctor’s appointment where she got a reality check about her condition, she was forced to face the situation. That experience was not a good one for Pelemo; she kept trying to recreate a moment in her life where she could experience the miracle of running without her crutches, but with time, she learnt to accept it all. 

Expensive healthcare 

The financial burden of living with fibrous dysplasia has always been a huge concern for Pelemo. From a young age, she required multiple surgeries and intensive care, which quickly became expensive. The surgeries made her vulnerable to other infections, leading to a constant need for treatment, in addition to regular check-ups and medications. Pelemo needed at least ₦20,000 each month just for her medications. 

Due to the aggressive nature of fibrous dysplasia, Pelemo is also required to take medications every day to stop her bones from fracturing further.

“I stopped taking my medication because I could no longer afford them, and that means that I would have to risk faster deterioration of my health,” she told HumAngle. “Even though I stopped the drugs for a while, I don’t feel much of a difference because my bones have always been weak. There are also a lot of other expenses, such as getting crutches. Last time I bought them, they cost ₦10,000; now they are up to ₦20,000.” she said.

There are also times when she needs expensive adult diapers. According to Clinicaid, disposable adult diapers in Nigeria range from ₦1,500 to ₦7,000 per pack, while reusable diapers can cost  ₦3,000 to ₦10,000 depending on the quality or design. Her condition also requires physiotherapy, but the overwhelming cost led her to find alternative ways to learn some of the exercises she needed. “But exercising at home is discouraging, and I struggle with consistency sometimes,” she said. 

‘It is not easy’

With ‘Disability with Pel’, Pelemo hopes to bridge the representation gap for many others like her who face loneliness and live in isolation. Pushing this advocacy online is not always easy.

“Content creation is not easy,” Pelemo told HumAngle. “And I have a lot going on in other parts of my life. It is hard to balance—everything, especially with my chronic illnesses. There are many days that I just can’t do anything.”

Despite her efforts to communicate her messages clearly and explicitly, many people misinterpret them, often seeing her work through the lens of pity rather than empathy. However, Pelemo believes that some people would still be open to learning and willing to do better. Her work via the online platform has led her to facilitate disability talks with women with disabilities in Nigeria and the United Kingdom.