Tayo Faloye, 47, Founder/CEO, Disability & Sickle Cell Organization of Nigeria (DISCON), is on a mission to get SCD officially listed as a Disability within the Disability Laws of Nigeria. What will the benefit of this be? Faloye speaks with Tosin Fawemida
SCD Not Strictly a Disability But…
Some individuals living with sickle cell have complications from the disorder that qualify as disabilities.
Avascular Necrosis (AVN), for example, is damage to the shoulder or hip joints, which causes severe pain, stiffness, limited joint function, restricted movement and may even be crippling.
Hearing loss (partial or total deafness) is another complication of SCD. I am a victim myself. This is a hidden disability issuing from SCD.
What we want to see is a broadening of the scope of the Disability Laws in Nigeria to cover people with SCD who may have suffered any form disability as a consequence.
Benefits of Being Declared a Disability
“SCD COMPLICATIONS SHOULD BE RECOGNIZED AS A DISABILITY.”
I think the above will be more befitting as a caption
The benefits for individuals with Sickle Cell under any Disability Laws are enormous. Many countries in Europe and America have social disability laws: individuals with sickle cell disorder living in those countries are entitled to the full benefits under the law.
Lagos State has a department for Disability known as LASODA (Lagos State Office for Disability Affairs). It was inaugurated by outgoing Governor Akinwunmi Ambode and funded with N500 million for persons living with disability (PWD). Assistive devices such as wheelchairs, crutches, eye glasses as well as vocational training, etc are offered PWDs in the state for free. These are some of the benefits arising from the Disability Laws. The benefits are applicable to folks with SCD who may be disabled and reside in Lagos State.
You Don’t Have to look Disabled To Be Disabled
Sickle Cell is not in itself a Disability. We are dealing with Sickle Cell Disorder and disabilities that sometimes arise as a consequence. These are separate but intertwined issues.
People don’t necessarily have to be visibly physically challenged to be disabled and qualify for benefits from disability laws or projects.
Hearing loss isn’t conspicuous to an onlooker.
There are folks with SCD who are affected to the extent that they are regularly pale, perpetually weak and absolutely unfit for any serious physical exertion or stress, let alone work or hold down a regular job.
What’s better defined as a disability than this? It’s high time government recognized SCD as a disability.