In Commemoration of the International Usher Syndrome Awareness Day 2020, Blessing Oladunjoye had an EXCLUSIVE INTERVEW with Solomon Olakunle Okelola, the Founder, LionHeart Ability Leaders International Foundation, an NGO that promotes interests of Persons with Disabilities.
Question – What is Usher-Syndrome?
Response – Usher-Syndrome also known as Deaf-Blindness is a combination of vision and hearing loss which may range from mild limitations to total blindness and profound Deafness. In other words, individuals with deaf-blindness have varying degrees of both vision and hearing impairment. This makes it very difficult for family members and other people in the world of individuals with deaf-blindness to communicate and socialize with them, as well as to provide for their health, academic and other needs. Thus a large number of these individuals grow up dependent and unable to cater for themselves or make a living.
Question – What are the categories of deaf-blindness?
Response – the categories vary and we have those who are totally deaf but with some residual vision- low vision or partial sightedness (long sightedness, short sightedness). We also have those who are totally blind but with residual hearing: sighted or low vision). There are some who have both residual sight (whether partially sighted or low vision) and residual hearing (hard-of-hearing). Last on the list is those who are totally blind and totally deaf. I’m an individual with deaf-blindness myself. I’m totally blind and hard-of-hearing. I use hearing aids and Sign Language, but my speech is clear and I can communicate orally as well.
Question – what are the causes of Usher-Syndrome?
Response – The causes of deaf-blindness are many but the major causes are Syndromes, Multiple congenital anomalies, Congenital Prenatal Dysfunction, Pheri-Natal Causes and Post-Natal Causes. Without mentioning them according to the categories, I would like to list the causes of deaf-blindness in a broad format and they include; Fetal alcohol syndrome; Hydrocephaly; Maternal drug abuse; Herpes; Rubella disease; Syphilis; Anoexia; Premature delivery; Accidental fall of the baby from the hands of the surgeon or midwife; Wrong use of forceps; prolonged labour; Malpositioning of the foetus in the womb; Asphyxia; Meningitis; Stroke and many others.
Some people are deaf-blind from birth. Others may be born deaf or hard-of-hearing and become blind or visually impaired later in life; or the reverse may be the case. Still others may be adventitiously deaf-blind, that is, born with both sight and hearing but lose some or all of these senses as a result of accident or illness.
Question – How has people with Usher Syndrome been segregated in the society?
Response – Individuals with Usher Syndrome are a relatively small number among individuals with disabilities all over the world, not just in Nigeria or Africa. And like I rightly mentioned, they have 3 main problems: hearing difficulties, visual impairment and balance issues.
As we all know, communication and interaction with people in our world require the use of eyes for contact and ears to hear and respond. But because individuals with deaf-blindness have little or no use of their organs of sight and hearing, they are usually isolated, left on their own and most people in their world are often not ready to make the extra effort necessary to help them interact and live meaningful lives.
As we speak, there are several children with both vision and hearing problems locked away in their homes, just existing, without really living a life, because their family members and others think they cannot do anything except eat, sleep. That is one big misconception with which people in Africa are wasting the lives of children whose talents they do not know how to bring out. Nigeria has a whole lot of work to do for these individuals.
Question – What support can the society provide for people with deaf-blindness?
Response – parents, family members and others in the world of such individuals should realize that these unique individuals have the potentials to succeed despite their impairment. They have twin impairment of sight and hearing loss, but the society in which they live constitutes a disabling condition to their ability to succeed. There are ways you can talk to them such that they can hear, there are ways they can be aided to see, and thus learn to master their environments in the bid to succeed. It is up to people around them to learn these ways.
However, we look forward to the government joining us in the quest to create awareness about the condition among the people, we look forward to the government training medical officials on genetic testing for Usher Syndrome, which is the only way to prevent the condition from spreading, we look forward to the government in joining us to train teachers, parents and others on how to communicate and teach these individuals, so as to give them the chance to live meaningful and productive lives in their societies.
Let’s remember that they are equally citizens of the society despite their impairment, and depriving them of their rights to education, health and all amounts to abuse of their rights. How big is your heart? Show it in how ready you are to surmount the challenges facing you in the bid to ensure no one is left behind.
Question – What measures do you think the government can provide to eradicate some of the barriers they face?
Response – We understand that the government cannot do it alone and as such we are looking forward to running several projects by supporting the government at all levels which the aim of enhancing the lives of these individuals. The fact is that every child can learn, no matter the challenges they face, if the necessary provisions and accommodation measures are made available.
Helen Keller was totally deaf and totally blind, yet she lived to become a Professor. Several other individuals with deaf-blindness such as Dr. Roberts J. Smithdas and Jennylynn Dietrich, all rose to greatness despite their inability to make adequate use of their vision and hearing. Yours truly holds a Master degree from the University of Ibadan, and look forward to commencing my Ph.D program in the coming year.
Indeed, it is not your inability to see or hear which limits you in life. It is not your inability to walk or talk. It is not where you were born or in what circumstances you grew up. It is all about you and what you believe about yourself. It is all about you, your faith in God and what you decide you want your life to be.
Many individuals with disabilities know this fact and are fully ready to prove their abilities to the societies, if only the society and the government would realize that the intrinsic abilities exist despite the physical impairment; Endeavour to make all that is needful available; and Help children with disabilities to grow in the right psychological environment so that they can have the positive self-esteem they need to make every other thing a possibility.
Question – What’s your charge to persons with usher syndrome as we mark this year’s usher syndrome awareness day?
Don’t limit yourselves, and don’t let anyone give you a limit. Hillary Clinton once said, “Nobody can make you feel inferior without your consent”.
Your success, your future and the accomplishment of your potentials all lie in your mind, not in your eyes and not in your ears. Would you rather have eyes that can see, ears that can hear, and a mind that has neither vision nor perception? If your eyes and ears cannot get the world to you, there are other ways you can get the world to yourselves. Never engage in self pity, and never stop believing in God and in yourself. Your inability to see and hear may be barriers to the world, they are no barrier to your dreams, so go on after those dreams with all your heart and mind. Then shall the world see you and testify, “God is Great!