In Nigeria, issues about deaf-blindness and persons who combine both vision and hearing loss (dual sensory impairment) were shrouded in mist and mystery, especially in the years before 2019.
Relatively little or absolutely nothing was known about these individuals, and they were hardly ever seen in disability circles, not to talk of in schools, religious centers or anywhere else in the society. Professionals in Special Education were aware that such individuals existed somewhere in the society, but most research efforts were directed at proving that these individuals lacked access to education and that special schools for the Deaf and the Blind were handicapped at the challenge of teaching or communicating with learners who had both vision and hearing impairment.
Despite the fact that the few among these individuals observable in schools or anywhere else in the society were those who with some degrees of residual vision (low vision) and hearing (hard-of-hearing), teachers and others still could not fathom how to interact with them, let alone educate them.
In addition, nothing was known about, and no researcher or disability advocate ever reported encountering any individual who was totally deaf and totally blind or any other category of deaf-blindness aside those with low vision and residual hearing.
When Lionheart Ability Leaders International Foundation staged its first public awareness and community sensitization rally in September 2019 to sensitize members of the general public in Lagos State in particular and Nigeria as a whole about the rare genetic disorder known as Usher Syndrome and the resultant vision and hearing loss, the organization only had two (2) persons with Deaf-blindness who led the rally- Mr. Solomon “Lionheart” Okelola and Mr. Oluseyi “Wonder” Eniyansoro.
That first effort and the follow-up rally which was staged in the Federal Capital Territory, Abuja later that same year in commemoration of the 2019 International Day for Persons with Disabilities, were personally funded by the Founder and a few Trustees of the organization.
Those two activities marked the beginning of a persistent advocacy effort for the recognition of the presence, nature and unique needs of citizens with Deaf-blindness in the Nigerian society and the fact that these individuals were being deprived of their fundamental human rights, locked away in their homes by parents and family members with the notion that it is not possible to make any meaningful contributions to society given the combination of an impairment in the two primary senses of vision and hearing.
Despite the setbacks posed by the aftermath of the COVID-19 pandemic and the global lockdown which followed, the group took to the internet to fuel the flames of the awareness ignited the year before. Their gallant efforts were soon after ignited by a grant from the Disability Rights Fund, with which they commenced full-fledged advocacy activities among government officials, policy makers, civil society organizations, the disability community, Special Education professionals, media houses and the general public alike- teaching about Deaf-blindness, the causes, means of identification of affected individuals as well as their nature and needs.
A major aim of their persistent efforts was also directed at finding individuals with both vision and hearing impairment in Lagos State in particular and the nation as a whole, including those who combine total blindness and deafness. They sought partnerships with other organizations and associations in this quest, and it was a big relief to finally see parents, guardians and family members coming out at last with their Deaf-blind to join the organization in the struggle for recognition and access to the exercise of their fundamental human rights.
The first convening of these families who had Deaf-blind individuals, held in an historic meeting in Ilupeju, Lagos State in January 2024 with support from the Disability Rights Fund, marked a significant day in their lives. For the first time, they came to realize that they were not alone in the extreme circumstances in which they lived and the severe challenges they faced on a daily basis. It was an eye-opening experience for several of the family members, a time to draw strength and build resilience from being together and realizing the need to stand together in the struggle to ensure provision for the unique needs of the Deaf-blind in the Nigerian society.
In the words of Professor Helen Keller, one of the most famous Deaf-blind the world has ever known, “Alone, we can do so little; together, we can achieve so much”.
With that resolve, the small group seem set to unveil the emblems of their new association in what promises to be a groundbreaking launch and maiden national conference scheduled for October 9th to 11th 2024 in Lagos State, Nigeria, under the theme “Out Of The Darkness Of Marginalization: Nothing About Disabilities Or Special Education Any Longer Without Deaf-blindness”; which several prominent personalities of the disability community and Special Education professional has indicated their readiness to be part of. Attendance, however, according to the organizers, is strictly by invitation or registration.
“As we are about to commence the next stage of the journey in the struggle for inclusion”, said Mr. Solomon Okelola, “We ardently look forward to establishing working partnerships with and the active participation of prospective donors, the government, fellow organizations and associations alike; as we forge ahead in the difficult task of finding and ensuringacademic, health, social and all-round inclusion for these unique, marginalized members of the disability community who are being hidden away in their homes by parents and other family members with the false notion that it is not possible to make meaningful contributions to the society in the event of both vision and hearing loss”.
Donations towards the requirements for the maiden national conference of the association, the national search for marginalized and deprived citizens with Deaf-blindness and the other upcoming activities of the new association can be made to the following account:
Account Name: Lionheart Ability Leaders International Foundation
Account Number: 1023022127
Bank: United Bank for Africa
Members of civil society organizations, Special Education professionals, disability advocates, philanthropists, researchers or members of the public who desire more information or wish to register for attendance at the conference can send an email to [email protected], [email protected] or contact the head office on the numbers 08068639028 or 08094299194.
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