The price of living with a physical disability in a non-inclusive society

The challenges of living with a physical disability in a society that is not inclusive can be overwhelming.

Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but today I want to focus on the challenges of living with a physical disability in a non-inclusive society like Nigeria, where I live.

I was not born with a physical disability. I acquired mine in my late teens through my 30s because of severe bone complications from sickle cell disease. These include ankylosis, avascular necrosis, osteoporosis, and osteoarthritis. These conditions gradually took away abilities I once took for granted.

My country provides little or no support for people living with disabilities. Nigeria remains a developing nation with almost nothing in place for disabled people. Many Nigerians with disabilities end up begging on the streets because the system does not support their basic needs or welfare.

When I had full mobility, I didn’t completely grasp the struggles people with disabilities faced. That changed the moment I began living with my own disability.

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A lack of accessibility

One of my first significant challenges of having a physical disability was in navigating the hospital during ward rounds. You would expect a hospital to be totally inclusive, but many were not. Only a few areas had ramps for wheelchair users, and even those were not available everywhere.

As a student, I was not yet using a wheelchair. I could walk, but every step was painful and exhausting because of my bone complications. My parents were able to buy me a car, and that, along with my relentlessness, saved my education. Without it, my studies would have come to an end. Many sickle cell warriors with physical disabilities in Nigeria lose their education, jobs, and opportunities because the system simply does not support them.

Government hospitals are among the few buildings that attempt partial inclusivity. Most other buildings remain completely inaccessible. For example, I still cannot enter a bank alone. Many bank buildings do not support wheelchairs or walking aids. Each time I visit one, a family member must go inside to collect forms for me, and a staff member may or may not agree to come out to attend to me. This happens in many offices and organizations across the country.

I became an ambulatory wheelchair user after my internship. When selecting a department for my work, I had to base my choice not on my passion, but on accessibility. I chose the only department that was both accessible to my wheelchair and where I could be efficient without having to walk around. Although my choices were severely limited, I felt grateful that I still had the opportunity to make a choice. Many physically disabled people in Nigeria never even get that chance. They are unable to work, even when capable, due to the country’s lack of inclusivity and scarce opportunities. While some physical disabilities can stop a person from working, many sickle cell patients have lost jobs due to reduced productivity caused by the visible and invisible aspects of their disease.

Stigma and discrimination are universal challenges of having a physical disability. I remember being looked at with pity when I struggled to walk as a student, which I intensely disliked. I can’t appreciate kindness if a look of pity accompanies it. I valued friends who treated me the same regardless of my struggles. Always remember, empathy over sympathy.

A call for attention and action

Visible and invisible complications of sickle cell disease can profoundly impair a patient’s life and severely damage both their mental and physical health. Governments in developing countries like Nigeria must pay more attention to people who live with sickle cell disease, many of whom desperately need help.

These disabilities have stolen the education, jobs, and livelihoods of countless people. Many have become destitute, relying on begging for daily survival. Sickle cell patients with moderate to severe disability deserve disability pay to cope with these immense challenges.

Disabled people are humans, too, and we must remember them when we make laws, policies, and develop infrastructure. Nigeria and every nation must build more accessible public spaces and facilities so that people with disabilities can live with dignity. I hope for a world where everyone is respected and given the same rights and opportunities, regardless of their abilities.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.