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.
