By Adewale Adeyanju (INN), Lagos
Lionheart Ability Leaders International Foundation (LALIF), has appealed to stakeholders in disability community, the Lagos State Government and its various MDAs as well as society in general to join in the campaign and advocacy efforts aimed at demystifying Usher syndrome, a major cause of Deaf-Blindness, and bring the hope of a bright future to individuals affected by the condition.
Delivering his welcome address at a roundtable discussion on Deaf-blindness and Usher Syndrome organized in Lagos State tagged “Operation Stop Usher Syndrome: Building A Future For Individuals With Deaf-Blindness In Nigeria”, the Executive Director, LALIF – Solomon Okelola, a person with deaf-blindness, called on all stakeholders including the Government, the civil society organizations and the public at large to join in the quest to create an active network and synergy as they continue awareness and advocacy in the fight against Usher Syndrome because according to the organization, there is a lot the society can achieve when individuals with deaf-blindness are effectively integrated and included in the policies and programmes by Government, Ministries and the Civil Society Organizations”
Giving those in attendance an insight into what Usher Syndrome is, the Executive Director explained how Usher Syndrome afflicts individuals.
“Usher syndrome is a genetic disorder characterized by hearing impairment as well as an eye disease called “Retinitis Pigmentosa” (RP). RP causes night-blindness and a loss of peripheral vision (side vision) through the progressive degeneration of the retina.
“The retina is a light sensitive tissue at the back of the eyes and is crucial for vision. As RP progresses, the field of vision narrows – a condition known as tunnel vision until only central vision (the ability to see straight ahead) remains”. The condition affects 3 major senses in a person’s body- hearing, vision and balance, resulting in severe physical, health, communication, socio-emotional, academic and other challenges which people in the world of the affected individuals do not know how to ameliorate.
“This results in the isolation of the affected individuals and infringement on their fundamental human rights. The high level of ignorance about the condition among medical practitioners and the general populace also poses the possibility of an increase in the condition in the nearest future. According to Mr. Solomon Okelola, “it has the potential to become a pandemic of its own”.
Speaking on “the challenges of Deaf-blindness and its impacts on the affected person”, Dr. Friday Azanor, Lecturer, Department of Special Education, Faculty of Education, Lagos State University, categorized Deaf-blindness as either, totally deaf with some residual vision known as vision-based deaf-blindness; totally blind but with some residual hearing known as hearing based deaf-blindness; hard of hearing but low vision/partial sight known as partially sighted/partially deaf deaf-blindness; totally blind and totally deaf which is known as total deaf-blindness.
He further gave classification of Deaf-blindness as Congenital and Adventitious types. “Congenital are those born with the defects from birth while others may be born deaf or hard-of hearing and become blind later in life. Adventitious are those born with deaf-blindness but lose some or all later in life.”
Continuing, Friday Azanor spoke on the challenges faced by deaf-blind noting that “life is difficult, if not miserable for a deaf-blind person”. He went on to list among others: different view of the world by a deaf-blind person due to lack of sight or hearing, isolation and inaccessibility to the world, challenges of learning language, difficulty in mobility, behavioural and emotional difficulties, mental health problems and educational challenge as some of the challenges facing a deaf-blind person.
The Executive Director, Centre for Citizens with Disabilities (CCD), Mr. David Anyaele, represented by Mrs. Florence Chima Austin in her speech on “Disability Law: Ensuring No One is Left Behind” revealed that “while society viewed disability from the lens of charity and medical standpoints, it is imperative to state that social model of disability is a more progressive way to define and explore the abilities in disabilities.
“The peculiarity of the twin disabilities vis-a-vis the environmental, attitudinal, communication, technological and institutional barriers pose significant difficulties in person with deaf-blindness everyday life. There has been several legislation and legal framework protecting and promoting the rights of PWDs such as The Lagos State Special People’s Law (2011) and The National Disability Law (2019)” she averred.
Austin listed barriers hindering access to PWDs’ participation in programme and activities on equal basis with others to include: attitudinal barrier, institutional barriers, communication barriers and technological barriers while factors increasing vulnerability of PWDs include: lack of participation, inadequate knowledge of disability, inadequate data and statistics, inaccurate concern over cost and societal perception of disability.
To ensure no one is left behind, Austin revealed approaches to addressing disability issues.
According to her, “Leaving no one behind remains steadfast in the achievement of reduced inequality (SDG10). This includes identifying, prioritizing and respecting individual fundamental rights as well as understanding the social model of disability that advocates for removal of barriers to ensure equality, independence and humanity of PWDs. The operationalization and actualization of the concept is hinged on the collective efforts of government, individuals, civil society organizations, and more importantly organizations of PWDs in building a society that is Inclusive of all”.
Responding on behalf of LASG and the MDAs, the General Manager LASODA – Mr. Dare Dairo commended LALIF, urging them and similar organizations to come up with actionable solutions that can mitigate these challenges and help Government look into how it can make life easier for people with deaf-blindness.
“In your communications and demands, focus more on the solution. Stakeholders should also begin to channel their advocacy to be solution-oriented. Talk less of the problem but focus more on the solution. The Lagos State Office for Disability Affairs (LASODA) in partnership with LASG and MDAs are ready to work hand in hand to ensure Lagos State is disability inclusive” he stated.
Towards the end of the program, the LALIF Executive Director, Mr. Solomon Okelola presented a summary of the research works carried out thus far by the organization on the incidence of Deaf-blindness in Lagos State and the health and academic inclusion of persons with Deaf-blindness in the State. He also presented a workplan depicting how the various government agencies, CSOs and organizations of persons with disabilities would work together to actualize academic, health, social and all-round inclusion for persons with Deaf-blindness and other disabilities in Lagos State. He said detailed copies of the action blueprint would be submitted to each govenment agencies in the advocacy visits that would follow the roundtable discussion. Thus everyone would get an idea of the solution which the organization intended to implement in conjunction with the relevant agencies and organizations.
Present at the event were representatives of the Lagos State Government and some MDAs including Lagos State Ministries of Education, Information and Strategy, Health and Ministry of Local Governments,
Also in attendance were Lagos State Universal Basic Education Board (SUBEB), Lagos State Office for Disability Affairs (LASODA); JONAPWD Lagos State Chapter, Desire Health Inclusive Organization, Speaking Fingers Initiative, Down Syndrome Foundation, ASLIN and many others.
The roundabout discussion was organized with support from Disability Rights Funds and well attended by representatives of the Lagos State disability community.