From the Editor’s Keyboard

No person with disability left behind

19 November 2019 at 05:10 | 1513 views

By Fayia Sellu, Special Contributor, USA

Sunday April 14th was the Grand Finale of arguably the most popular television show in Sierra Leone, Housemates Salone.

As such gargantuan spotlight beamed on the stage of the Bintumani Conference Hall, no one could miss a starring character, Monica Yeanie Ghaliwa, the visually impaired or blind contestant who made it to the last couple. Of a first 40, then 20 contestants.That the show is professly driven by fandom and their votes on the staged ‘reality’ of ‘housemates,’ is testimony that the ordinary Jo(sephin)e Blow can and does care about the lives of those citizens afflicted with disability. Watching the live streaming on Facebook, I am nearly sure I saw moments pregnant with celebrity wedding possibility, wrapped in sensitivity. What do I mean? Even the First Lady Fatima Bio was careful not to mention anything about Monica’s disability in her talk at the climax of the event so as not to appear prejudiced. The question then buzzing in my head was, what would Monica represent outside those walls when the curtains fall? Now that she has all the visibility that comes with celebrity, what would she do to represent the less-or-non-visible disabled persons languishing where no one looks or cares to?

Some disabilities are more equal than others in Sierra Leone. Some have reached the level of “establishment disabilities,” while others are yet to be understood or categorized a disability, let alone have an infrastructure put in place to alleviate the conditions of persons suffering from such disabilities. We can chalk the odds up to ignorance, sundry backwardness and decadence that make our culture in deficit of the terms of modernity not oblivious of the multifarious conditions which qualify as a disability.

The government of President Maada Bio has centered Human Capital Development at the fulcrum of their governance policies. One thing is clear, insofar as Persons With Disabilities (PWDs) are concerned, there are so many cracks, nay gaping holes, in the system that ensure a colossal waste of their human capital. I’ll try to explain.

Autism is one such disability that has no place in the spectrum of disabilities, affects thousands, and been left at the mercy of superstition and arrant ignorance. Children born with autism and its varied manifestations in Sierra Leone are treated less than human and said to be demon-possessed or retarded (fool-fool). Those with the condition that are epileptic and said to be attacked by “their devils” when they have their seizures; when they are non-verbal they are called (mumu or bobo); when they have an Attention Deficit Disorder (ADD), they are treated as stubborn (Tranga Yase), and the list goes on for ways we have ostracized and dehumanized people with Autism in our culture. And we are not talking about a Stone Age practice. Like yours truly, there sure are many reading this right now who know or grew up with, worse, even clapped and sang, ridiculing someone autistic.

Enter Mariama Korrca Kandeh. She is mother to an adult son with Autism. She raised him in England, where the are obviously better conditions to have and grow up with the condition. Still, it was not a walk in the park. She had to remove her son from school for bad treatment and go the long extra mile to ensure her child has all the opportunities for healthy growth. Kandeh is co-founder of Autism Voice and was in Sierra Leone to promote a chapter. She indicates that the main impetus for founding the group was the treatment her son received from other Sierra Leoneans in the UK. On April 2nd, the day set aside globally to pay attention to the disease by the United Nations and other bodies, Kandeh was on AYV Television with a passionate plea for acceptance, empathy and action for the autistic, as her group busied themselves with outreach to schools and communities around Freetown. Trained in the social aspects of the disease, she tried to explain in lay terms what it meant to be neurotypical and neurodiverse, also explaining that the condition almost always manifests with comorbidity like dyslexia, dyspraxia, ADD or ADHD and other disorders that could be misunderstood for stubbornness or just rank rudeness. And there are the gifts that also come with the condition. A lot of autistic persons seem to thrive in STEM courses. Working in a country where there is zero research, and where people still associate the condition with the demonic, Kandeh asked:

“Everybody knows computers or Microsoft, the guy who gives the mosquito nets; would you call Bill Gates a ‘witch’?” She went further, dropping names like Prof. Stephen Hawkings and Facebook’s Mark Zuckerberg to emphasize the wide spread in functionality, or how (in)visibly the disability could manifest in people living with Autism. Kandeh acknowledged that even in England where she raised up her now adult, fully functioning, autistic son, it is so tough for people born with the condition that they still record among the highest rates of suicides.

“It took a lot of work to get our son who is now into engineering to sit still for a few minutes, until he was able to sit through a 90 minutes class,” she noted, adding that the work of autism awareness is “the beginning of a long journey” of acceptance, love and support for the autistic, especially children. Check this out folks, even the only institution that seems to be dealing with what could be autistic children, with a roll of 74, is called, and I am not kidding, Hossetta Abdullah Center for the Mentally Retarded. A long way to go indeed!

All that is just for Autism. Previously, on AYV TV, I had watched a smart Albino teenager articulating the need to understand Albinism as a condition of disability in Sierra Leone and make the requisite accomodations in especially learning environments. There is mental illness. With over a decade of civil war followed by the Ebola outbreak and the attendant traumas they visited on Sierra Leoneans, one has to only know that there are two psychiatrists in a country of some seven million, to see that the odds are stacked to the sky of many undiagnosed and untreated mental illnesses. One can go on and on, and hear the question, “so what are the authorities doing about PWDs?” As usual, they have passed legislation to deal with it. The Persons with Disabilities Act of 2011 is a good law were it implemented in letter and spirit.The first 13 sections necessitate the forming of a Commission for PWDs. That has been done, even if perfunctorily or to satisfy the requirements of donor/development partners. There are sections of that law that were even timed.
Five years of its coming into effect, 2016, the law sanctioned the provision of disability access to public transportation, premises, employment, basic services and amenities. Yet to be seen! Let alone things like, all television stations have mandatory sign language interpreters or there be disability-compliant telephone services. And what’s up with the mandated National Fund for Disability?

Back to Monica Yeanie Ghaliwa and her newfound celebrity. It is heartening to see outpouring of felicity and support for her. Another thing one must also see is a legible disability which Sierra Leoneans can recognize as capable of reaching heights. They know Professor Eldred Jones. They must have listened to the Voice of the Handicapped, 96.2 FM Mustapha Pabai Attilla or Cullenzo Cullen on air. The former became a Deputy Minister in the previous government and the latter is the head of the Commission for Disability. Ghaliwa lived to 18 before she succumbed to glaucoma, but was already a disability rights activist, feminist and journalist before the Housemates Salone experience. How many times do you think of an amputee, someone with polio without thinking of them as victims, beggars or like we used to call PWDs handicapped? It is difficult to see any disability as an establishment one. For the blind or visually impaired to be seen as capable of achieving many things, Sir Milton Margai literally laid the foundation for a school for the blind on the first anniversary of independence in 1962 at the current location on Wilkinson Road, named after him. With assistance from the UK, the institution has turned out hundreds of blind persons into productive Sierra Leoneans. It is no wonder there is a Sir Milton Cheshire Home also in Bo that has catered to disabled persons. We can go into conjecture about whether the first prime minister of the country was himself partially disabled or that his medical background pulled him strongly toward the disabled; one thing is clear: his legacy is with PWDs is lasting.

We have not seen any leader come along that will equal Sir Milton Margai or at least continue his legacy. The work of awareness, love and empowerment of PWDs does not end at allowing a few capable blind persons in the spotlight now and then. The firmament of disability must be broadened to encompass the illegible forms as we grapple with them in the 21st century. Every effort, disability and minute counts!