Lionheart Ability Leaders International Foundation Commemorated 2020 International Usher Syndrome Awareness on 20th September, 2020 with a webinar which key stakeholders in disability were in attendance.
International Usher Syndrome Awareness is celebrated every 19 September, 2020.
Solomon Olakunle Okelola, the founder of Lionheart Ability Leaders International Foundation (LALIF) who is also deaf-blind took his time to explain how Usher Syndrome is caused by a gene mutation, and how the fact that carriers of the defective gene do not show any sign of vision or hearing problems make the condition so difficult to detect and prevent. However, if two carriers of the defective gene come together and the offspring inherit the defective gene from both parents, the child develops Usher Syndrome. Thus it is very difficult to prevent because of the extreme lack of genetic testing facilities in Africa as a whole. The fact that many medical practitioners in Nigeria and Africa as a whole are yet to even hear of the condition is a source for concern, as it places the health of generations yet unborn at risk.
He called on government officials and health policy makers to step up and do the needful as regards the issue so as to prevent what could possibly become another pandemic.
He illustrated what individuals with deaf-blindness, especially those who are totally blind and totally deaf are going through every day, simply because people in their world do not know how to communicate and interact with them, or that such individuals can go to school and become self-reliant in future.
He narrated how the only thing their parents know how to do is place a plate of food in their hands once, twice or thrice a day, then leave them by themselves until the next meal. He showed how one is in a world of one’s own when one loses both vision and hearing- the isolation, the depression, the constant heartache at not being able to express oneself or understand one’s world. He also made a clarion call to parents and others to bring out such individuals for education and empowerment, so that they can acquire knowledge and skills for future self-reliance and independence. A couple of the participants were really moved at the illustration and ready to do the right thing.
The webinar also looked into (Educating, Enlightening & Empowering The World For Change & Transformation) with Theme: In The Aftermath of COVID-19, What’s Next For Persons With Disabilities(PWDs) And The World At Large?
Solomon Olakunle Okelola in his paper presentation titled EQUALITY AND EMPHATHY: TOWARDS THE CREATION OF AN INCLUSIVE POST COVID19 WORLD pointed out that bad governance is the major cause of the nation’s inability to attain equality and social inclusion. The extreme circumstances in which the large majority of the masses live have resulted in severe hardships through which they struggle to survive, living from hand-to-mouth each and everyday. For this reason, a large number of the people are too preoccupied with trying to make ends meet and keeping body and soul together, to the extent that they hardly bother about the welfare of the other. Life in Africa generally, has come to be regarded as survival of the fittest, and the generally adopted motto is “Every man for himself and God for all. It negates unity that would foster collaborative efforts for national progress and it impacts negatively on the masses (especially citizens with disabilities) who are always at the receiving end of exploitation. This also lead to marginalization and discrimination against individuals with disabilities by government and the general public, denying persons with disabilities basic rights especially at the time of COVID-19.
He also pointed about the level of neglect about the next persons feeling and welfare going in our society is high, people are more engrossed in looking for what comes to them and most times they pay little or no attention to someone nearby crying for help. He threw more light to this discuss by telling a story of a young lady who committed suicide in Akure during lockdown because she was depressed, calling for help on her Facebook wall but nobody listened eventually she took her life.
The neglect is what persons with disabilities faced especially at the COVID-19 era. A lot of persons with disabilities need people around but the society cared less about them. No information about the virus to some forms of disabilities because their format of accessing formation were not fashioned into plan.
“Individuals with disabilities haven’t fared any better, as most of them (particularly individuals with visual impairment) require a lot of assistance from the people they meet in the course of their daily pursuits while those with hearing impairment, because of their inability to make use of auditory symbols, lack access to adequate information about the virus, the pandemic and the resultant lockdown and survival measures. Polio survivors and individuals with other physical impairments have had to remain indoors with hardly any source of income or anyone to help with their various needs. It’s been an extremely tough time for the whole human race, particularly individuals with disabilities as a large number of them have either been unable to secure employment because of the general negative attitudes and presupposition in the society, or own small-scale businesses which were handicapped or crumbled by the economic challenges presented by the pandemic” he added.
“If you who are able-bodied can say life’s gone from bad to worst with all the difficulties presented by the pandemic, what would you expect an individual with disability to say, what with the limitations posed by the impairment, the negative social attitudes and beliefs? Unfortunately, the aggravated difficulties of the global health crisis have made majority of the people more self-centered, more focused on personal gains and wellbeing than ever. It is this same spirit many are taking into the post COVID-19 world. As a result, there may be no real end to the deepening crisis of economic and social decadence, the poor standards of living and the frequent conflicts of interest resulting in unnecessary loss of lives and properties. Because no one is ready to do the needful” he informed.
He proffered that with unity and unity of purpose, if we stand together, we can together successfully survive the economic hardship that COVID-19 brought while carrying everybody along in the Post-COVID-19 time.
“Can you sweep the floor of your room with only a single stick of broom? Of course not! And so long as you refuse to bind the whole bundle together for the sweeping, the dust and dirt will pile up overtime” he illustrated.
“So is it with the creation of the united, inclusive world we all desire, but which we are preventing ourselves from achieving. Until all the people work together to make the dream a reality, we will each continue to offer futile prayers to the Heavens for aid. Heavens, they say, it is only those who help themselves, receives help from God, why being alone” he added.
Miss Truphosa Fridah Monah, Founder, Women And Realities of Disabilities (WARD) Organization in Kenya in her paper spoke about The Impact Of COVID-19 On PWDs And Other Vulnerable Groups. she spoke the impact on their social lives which has brought about increased isolation and cases of Sexual and Gender Based Violence. Many people with disabilities have been locked up with their abusive partners and this has even increased cases of the already existing cases of intimate partner violence. Another is Economic Impact where many people with disabilities find themselves among the citizens who lost their jobs, those who had businesses had to close down because the client scope went down, Impact On Health: People with psychosocial disabilities and other people with mental illness have been affected a lot. They already are fighting unstable mental health and the pandemic has doubled the anxiety, depression and fear in them and Lack of access to medication, food and other essential things has become and still a challenge to people with disabilities. It is because of a number of reasons; loss of sources of income, inability to go to the stores, pharmacies and other places to get the commodities due to fear of infection and controlled movements.
Speaking further, she proffered how we can achieve post COVID-19 inclusive society,
1. We should commit to strengthen education at all levels and in all forms as a common goal. Education works to eradicate inequality and exclusion.
2. Expand the definition of human rights so that it addresses the importance of human connections and access to resources.
3. Value the power of knowledge and innovation. This can play a big role in coming up with ways to deal with the “new “normal” way of life.
4. Promote equal participation of all people including people with disabilities.
5. Protect the social and virtual spaces to ensure security in all shared spaces e.g cyber security on the internet.
6. We need to consider making technology accessible, available, and affordable or free if possible. There should be open access to virtual and digital resources in formats thatcan be used by people with different types of disabilities.
7. For the sake of understanding our health in basic ways and how to both prevent and manage health conditions, we should ensure basic scientific literacy is available.
8. Flexibility is key, we cannot thrive with a ready-made approach to life. We need to build content from the pedagogical spaces of experience and human relationships.
9. We need to advance global solidarity and embrace the spirit of knee jerk approach as well as systematic approach to problem solving.
Some persons with disabilities shared their experiences during the lockdown.
Chairman of the Board of Trustees, Mr. Kolawole Alex Olugbodi, who is a polio survivor and was also the Chairman of the event, encouraged parents and others to strive to develop a sense of empathy when trying to interact with individuals with disabilities in general, so that they do not constitute disabling factors for these individuals who are striving to succeed despite their disabilities. He also said the general public should know that all children can learn and be successful so long as the necessary support and accommodation are available. He therefore called upon everyone to learn to speak the language of love and empathy in a bid to include individuals with disabilities in society and to create a world that works for all.
