Disability, not a death sentence’

IBRAHIM Apekhade Yusuf profiles some people with disabilities who have been able to move on with their lives, despite the odds against them. This year’s International Day of Persons with Disabilities on December 3 was a time to salute their irrepressible optimism

Global awareness on disabled persons

Understandably, the theme for this year’s International Day of Persons with Disabilities was ‘Keeping the promise: Mainstreaming disability in the Millennium Development Goals: Towards 2015 and Beyond’, almost a continuation of last year’s theme: ‘Realizing the MDGS for all-Empowerment of Persons with Disabilities and their Communities around the world.’

However, notwithstanding the global concerns on the plight of the disabled, majority of these set of people who have been stereotyped as society rejects and denied equal opportunities like their physically endowed contemporaries, have not only been able to rise above their challenges but seem to have gotten their lives back on an even keel.

At separate interviews with some of them, they not only expressed their zest for life on account of their remarkable, if not outstanding contributions to the society, but would rather there is also a level-playing field for many of their contemporaries out there, who are daily confronted with socio-economic challenges, and equally undermined by the rest of the society as a result of belonging to a disadvanged station in life.



The success stories



If there is an individual who perhaps has lived out the true meaning of the credo: ‘Ability in disability’, that person is probably Ms. Garance Fannie Upham.

Nance, as she is fondly called by her friends, was born like any other normal child to an American father and a French mother. But like many other persons with disabilities, she acquired hers as a result of criminal acts of negligence caused by so-called caregivers.

Specifically, a medical accident she suffered when she was barely nine months old left her paralyzed. But notwithstanding the unpleasant circumstances of her childhood, Nance has grown up to become one woman with a heart of gold, her mantra being "to serve humanity as best she can."

In an exclusive interview with this correspondent from her base in Switzerland, recently, Nance, who is now 61, shared her life’s story.

"I was paralyzed 80 percent [in] all four limbs after an injection in 1950, aged nine months. Thereafter, I was put under experimental therapy: made to exercise-made to move several hours a day throughout childhood", she recalled.

Expatiating, she said: "With some surgery, and even while legs and arms remained very weak with polio, at age 13, I was able to act like "Forrest Gump" in the movie: to drop corset, braces, orthopedic shoes and crutches and to walk long distances with only a small cane. Multiple fractures forced me to get a wheelchair just six years ago at age 54. I’m now re-learning to walk again. I have never stopped training for the Paralympics."

A woman who has probably suffered a lot of privations than she is willing to admit herself, Nance, has a passion to serve humanity and she does that with such zeal as to make even the angels grin with envy!

As a strong voice in patient safety advocacy, she has helped to facilitate different interfaces and brainstorming sessions just as she is involved in a lot of other social welfare-related campaigns across the globe.

Besides, she is a multi-disciplinarian having acquired training in journalism, economics, public health, social work, sports, to mention just a few.

At the last count, she has served as Member, Steering Committee, Patients for Patient Safety, World Alliance for Patient Safety, World Health Organisation, General Secretary, Safe Observer International, Member of the Board, Infection Prevention and Control in Africa Network (IPCAN) and Reseau International Pour La Planification Et L’Amelioration De La Qualite Et De La Securite Des Soins En Afrique (RIPAQS) Chair, Disability and Economics Circle, People’s Health Movement to mention just a few.

It is however not surprising that patient safety is one subject that has remained so dear to her heart, given the circumstances that led to her physical deformity.

In fact, the popular joke often shared among her friends is that telling Nance about patient safety is like teaching a grandmother how to suck eggs!

And to put her friends’ hypothesis to test, this reporter also decided to broach the ubject-matter of patient safety in the course of this interview, and before you say Jack, Nance was literally firing from all cylinders!

Hear her: "Every year in the world, there are 30 billion injections for healthcare, and if we rely on the last study made a few years ago, close to 40 per cent may be unsafe, that means 12 billion ‘dirty’ uses of injections in the world every year.

"To give you an image: 12 billion times a year patients are put at risk of ‘sharing’ each other’s illness. Imagine, you come in for a broken knee and you may come out of the hospital with hepatitis C? You come in for malaria, and you could come out with HIV? We must talk about it."

There are also many likes of Nance within Nigeria and beyond, many of who are not only burning with passion but have also found fulfillment in life despite their incapacitation.

Danlami Basharu, 51, is another case in point. Basharu hails from Taraba, in Bantaje Local Government, Wukari.

Visually impaired, the young Danlami attended both specialized and conventional schools including the Pacelli School for the Blind and Partially Sighted Children, Surulere, Lagos, Kings College, Lagos, University of Wales Aberystwyth, where he earned a Bachelor of Arts degree in Education/History.

His hunger for knowledge saw him bagging an MBA from Durham University Business School; and of course, he capped it with a first and second degree in law from Trinity College, Cambridge University.

His working career spans both the public, civil society, among others. He had a short stint as a Secretarial Clerk, in the then Gongola State, Ministry of Education, Wukari Division, in 1977. He also worked as a Senior Producer at the Nigerian Television Authority (NTA) and also as a Radio presenter on Radio Nigeria 2, Lagos.

Danlami who is well-travelled has been to the different continents of the world, including Us, UK, Germany, Span, Holland, France, among others.

You would expect that his being handicap would have been a minus for him, as far as his social life is concerned, but Danlami has a robust social life which not only compares but even rivals his more fortunate contemporaries.

Apart from been the National President of the Joint National Association of persons with Disabilities (JONAPWD), the umbrella body of people with disabilities which the Federal Government recognizes,he is also involved with different organisations both locally and internationally.

Interestingly too, he has also bagged several awards both locally and internationally, including the Julie Coker award for best broadcaster of the year, 1990 - Radio Nigeria 2 FM, Fellow of Cambridge Commonwealth Trust; November, 1993, Award of Baraden Wukari by His Majesty, the Aku Uka of Wukari, Dr. Shekarau Angyu in November 2003.

Adeboye Abioye, 38, is another individual who epitomizes the spirit of resilience. Fondly called Boye by friends and associates, he was diagnosed of polio at age two, the result of which led to his inability to use his limbs.

However, with the support of his parents, he has been able to get a life for himself. With just a degree in French from the University of Lagos, he has been able to work in different blue-chip companies including Access Bank, Ecobank, and Shell.

But he resigned from Shell few years ago, to pursue what he described as his life-long "calling."

He currently sits atop as the Executive Director of Theseabilities Limited, a company which at best can be described as a disability solutions provider.

Justifying his aim of setting up the company, he said: "There over 20 million people with disabilities country today, if not more because in Nigeria the rate of disability is higher. We have more people with disability as a developing country. I realized that there are lot of people who really needed to get a life, who needed to access education, so as to become contributors to society and not just beneficiaries."

Speaking on the challenges he has faced since he set up shop, he said: "The most daunting challenges that we have had is society’s perception of people with disabilities. I remember a bank I went to discuss disabilities with, one of the top people there, just called me aside and said: "look oga, all these things you are talking about, I don’t believe management would buy into it." He said, the best thing is that I should just write that we want to do some activities, that in that way some money would come out. And I was very pained and sad. I told, him, it’s not about whether money would come out or not, we are trying to open up your services that we can participate.

"So, that’s the average thinking in the society. The editor of a major newspaper we offered to provide a solution at one of his programmes, and he told us it was going to be distracting. When you look at such comments, you now realize how people think of people with disabilities."

He however said the company has recorded a few milestones. "We are gradually breaking into their heart; we pursue our first solution for about two years, writing proposals, sending reminders, until in 2009, when we got the first solutions deployed at UBA Headquarters in Marina. We have deployed the solutions for Lagos state also", he stressed.

On where he hopes to see his company five years from now, he believes things can only get better. "We hope to maintain our leadership position as a pioneer disability solutions company in the country. We are offering up-to-date hi-tech solutions to companies, adding value, bringing benefits to all stakeholders: the companies, disabled persons and every body. We hope to still maintain that. And we hope to deploy more of our solutions", he said matter-of-factly.

Boye, who is currently away in US, where he is on appointment at the White House to see the Special Assistant to President Obama on disabilities, Mr. Kareem Dale, hopes to forge a possible collaboration with the US, at the government level.

Boye’s story also has a verisimilitude with Dr. Adekunle Israel Balogun. Born 35 years ago, in Igede Ekiti, in the present day Ekiti state to Mr. and Mrs. Jacob Adeoye Balogun, he was infected with polio at the age of nine months, and this led to the paralysis of his right leg.

He had an itinerant elementary education from Muslim Community Primary school in Odo-owa, and also at St Paul township primary school, in Jos following the transfer of his dad to Jos. Having completed his primary education, he was asked to go and learn a trade, but fate had better plans for him. With the help of his grandmother, he was able to continue his studies at Babalola Memorial C.A.C Grammar School Odo-owa in 1990 and 1993, where he not only emerged as the overall best student at both junior and senior secondary school level respectively, but also distinguished himself by winning numerous awards and representing the school at various competitions.

He later proceeded to the University of Ilorin to study medicine but was denied the opportunity because of his disability, instead he was given Biochemistry as an alternative course. But given his determination to pursue his life-long ambition, he later left to enroll for A-level at School of Preliminary studies Keffi, where he had his A-level and emerged as the 2nd best student in his combination (Biology, Physics and Chemistry). His sterling performance naturally earned him a place at the prestigious Ahmadu Bello University Zaria, but he was again denied the opportunity of studying medicine despite numerous appeals on the authorities to review their policy on admitting persons with disabilities to study medicine.

He was subsequently admitted to study chemistry. But like a dogged fighter, while in his 3rd year in chemistry, he again re-applied to study medicine at the University of Jos. And as if acting out a script prepared for him by providence, he not only got double admission into 100 and 200 level medicine respectively, but also won a scholarship by Lewis Adebayo, a US-based Nigerian, with which he supported himself through medical school. He successfully graduated in 2007 at the University of Jos as a medical doctor, and subsequently had his internship at the University of Ilorin Teaching Hospital.

He began his working career at the Challenge Your Disability Initiative, a pet project of the First Lady of Bauchi, Hajia Abiodun Yuguda, as a volunteer where he served as the program officer in charge of health, and subsequently got employment as a medical officer at the Bauchi State Hospital Management Board.

To his credit, he pioneered the 1st peer educators training on HIV/AIDS and STI’s for persons with disabilities in the Northeast region. He was also part of the team that was able to sponsor and defend the bill on the rights of PWDs in Bauchi State, among many other projects.

Ms. Oluwakemisola Adegbesan, 30 plus, who hails from Epe, in Lagos, is a disabled athlete. She became disabled after she was struck by a mysterious illness at the age of three. Unlike many of her contemporaries who had the opportunity of acquiring formal education, this is one luxury little Oluwakemisola could ill afford on account of her unstable background, having being raised in a polygamous family, of course, under a very acrimonious and unfriendly environment.

Sola, as she is fondly called by her chums, has two kids out of wedlock, and is the fourth of nine children, with four already dead.

Torn between begging and joining the world’s oldest trade-prostitution, all in desperation to make ends meet, she soon developed interest in disabled sports. Today, she is literally living her dream. Apart from been a power lifter and lawn tennis player, with appearance in several national sporting competitions in Lagos, Imo, Kaduna, among others, and also winning laurels for her stellar performances such as silver and gold medals. She is also an actress, and has earned credits in several Yoruba flicks, including Kura, Osa Eleye, Aragberi, Aselu, to mention just a few.

The above anecdote aptly summarizes the experiences of a good many individuals out there, who in spite of the many odds against them are today living testimonies of the infinite power of determination and endurance.

A clarion call

It is however instructive to note that out there are million of others, who are yet to find their bearing in life. From Lagos, to Sokoto, Cross River to Abia, majority of these less privileged members of the society can be found on the streets, either begging for alms, constituting some form of nuisance, among others.

But rather than give up on such people as many in the society are wont to do, Hajia Abiodun Yuguda, Founder/Chief Executive, Challenge Your Disability Initiative, holds the view and very strongly too that with the support of the society, a lot of these so-called disabled persons who are constituting nuisance out there could be assisted to become not only useful for themselves but to the society at large.

In a recent interview with the wife of Bauchi State granted The Nation, who graced a reception in her honour in Lagos, stressed the need for commitment of all towards addressing the plight of the disabled.

Citing the examples of some of the disabled persons, majority of who have benefitted from her skill acquisition and empowerment scheme, she recalled that "A lot of these disillussioned youths, have not only been able to find fulfillment in life, but are equally serving as a source of inspiration to many out there, at least by giving assurance to their peers that things can still be better no matter the setbacks, no matter the disability."

Disability, she insisted, is not a death sentence. If anything, it should inspire the affected person to find a new direction for his or her life, she said.

While acknowledging the fact that it could be devastating for someone, especially hitherto healthy individuals to come down with disability, she urged a multi-sectoral approach towards addressing the situation, including government, private and individual support.Legislation in support of the disabled

It is also the belief in some quarters that the Persons with Diability bill being sponsored by Senator Bode Olajumoke at the National Assembly, and which has reached its harmonization stage, holds the key to the future of persons disabilities, as a lot is riding on it. But whether these are mere platitudes, or not, time will tell.

However, Bauchi state may have earned itself a deserved place in history as the first state to legislate on the rights of persons with disabilities. According to the bill mandates all Ministries and Departmental Agencies, MDAs, in the state to reserve at least three per cent jobs and appointments for persons with disabilities.

Other states like Delta, Jigawa, Kano, Ekiti, Ondo, Oyo, Ogun, Lagos, among others, investigation has shown are also preparing a legal framework to guide the respective states in better addressing the issues of the PWDs.