Land of Disabilities: Life in Karni Village, where persons with disability are productive and hopeful – part 2
This piece is a continuation of Land of Disabilities: Life in Karni Village, where persons with disability are productive and hopeful – part 1
NGO comes into contact with Karni
In the first quarter of 2016, an NGO, Macedonia Jerusalem mission, a charity arm of the Solution ground of Mount Moriah Church, discovered the Karni community and provided assistance to the scores of physically-challenged persons here by providing gardening equipment, watering cans, rakes, Wellington boots and clothes.
Through an outreach by the NGO that year, they encountered a group of students from the University for Development Studies, who themselves were en route the village for an outreach.
The plight of the inhabitants touched the very core of the NGO’s passion – prompting a decision to mobilize funds and other materials to lend a hand of support to the group.
The NGO, who look to adopt the community in order to mobilise resources from Accra to donate to them to complement their hard work, says it is constrained but will continue the project because it’s a divine calling.
Pastor Peter Afolabi, Executive Director of the NGO, noted his outfit’s vision is premised on three pillars, which it looks to ride on to better the lives of the less-privileged around the country.
“We serve as a voice for the voiceless, serve as a vessel through which resources could be channeled from society to those we deem less-privileged, and also promote entrepreneurial development among these persons.”
“By that, we look to establish vocational training programmes for some of these less-privileged persons, to equip them with some skills, they can leverage on, aside farming and menial jobs, to fend for themselves,” Mr. Afolabi elaborated.
During its first visit to Karni in the first quarter of the year 2016, it distributed used clothing, bicycles, farming equipment among others to the physically-challenged and visually-impaired community in the area.
Macedonai Jerusalem Mission decided to reach out once again to these deprived people here last Christmas by mobilising used clothing, raincoats, gardening equipment from Accra.
One group that doesn’t usually get the credit for donating to charity is the Kantamanto used Cloth sellers association. The group gives out bags of used clothes every quarter to NGOs, Corporate institutions among others to donate to charity.
Members of the association explain they make these donations in return for God’s blessings and improved sales. The compassionate Ghanaian will always want to extend a hand – these used cloth sellers epitomise this.
Auntie Mary as her colleagues call her, packs some clothes into a sack and drags it slowly from side to side, making her way to the pathway in front of her small stall.
The announcement from the Association’s chairman, Evans Ofori-Attah, was loud enough through the speakers to remind the traders of their earlier pledge to support the NGO in their quest to clothe the unfortunate, neglected inhabitants of Karni.
As she hands over the bag of clothes, she tells me, “we have been helping our less privileged brothers and sisters, especially the orphans regularly. During festivities, we organize ourselves and donate some of our wares to corporate groups that come around with the aim of going to donate them finally to the beneficiaries,” she notes.
“It is our small way of giving out to charity, and of course we know God blesses us anytime we do and our sales get better.” Nana Yaw is not different. He admits, the Bible instructs mankind to help the poor and needy, therefore giving out some of his wares to the NGO for onward donation to the community, was a biblical fulfillment!
The smell of dry sweat had filled the clustered Kantamanto market, as some young volunteers of the church helped cart the bags into a track, in preparation for the trip!
Christmas came early
With these donations, 2016 Christmas came early for the physically-challenged community here in Karni. Never mind the long, bumpy trip up the Upper West Region.
At a town hall organised by the group and carried through by the assembly member of the area, scores of residents and their children assembled – some assisted by their spouses and children. After the name-taking was done, each received used clothing and other equipment. The joy on the faces of these poor people was priceless. For those who could see, they simply tossed the clothes on their shoulder and trying them on.
They sang. They danced. Probably their most memorable Christmas! The children were not left out. They jumped from one point to the other, changing over their clothes from the ‘tatters’ into the ones they had just been given. Christmas for them was already here, with these things! They chattered among themselves, while they fitted the clothes on, amid broad pockets of smiles and occasional giggles.
Nnama guesses her way through the small door, with her white cane in her right hand and her goodies in the other. She staggers slowly to avoid a fall – her empty mouth, with only four visible, discoloured teeth looked like she wanted to say something.
She kept smiling and nodding as she waited for her two other neighbours to join her before they steadily made their way onto the dry path that leads to their home. Some carried their gifts in a basin on top of their head, others used that carrier of the bicycle – it worked just fine.
Before I knew it, a man who should be in his forties, sporting a cream – coloured oversized and a torn shirt, emerges from the town hall, crawling on his buttocks.
He crawls slowly until he gets to a motorbike and is lifted by his son onto the back of the bike and ridden away. He had made his way to the town hall, to benefit from the donations from the NGO.
In front of the town hall, about seven children argue over who got a nicer shirt or pair of pants. But there’s a bigger need. Beyond the Christmas celebrations, lies an even bigger nightmare. These children have no uniforms, bags and other learning materials.
As he drools, struggling to string words together, Bayor murmurs…’I am fourteen years old. I’m in class four.”
He probably is a student who requires special attention, but from where?
His right arm appears to have been affected too.
While their friends and counterparts in the cities feast on chicken and rice dishes – maybe snacks, the children here are content with the used clothes they have received. The excitement among the residents spoke volumes. But for these children, the future remains uncertain as their parents continue to battle the experiences of disability with very little help from outside.
Healthcare challenges (Absence of eye center)
An area of urgent help, what the people of Karni require, is, undoubtedly, the establishment of an eye clinic and the improvement of general healthcare here.
Madam Elizabeth is a medical assistant at the health facility in the community. She tells me the facility does not have an eye center to cater for the needs of the over 50 persons here who live with one form of eye defect or another, with some going completely blind, and others visually-impaired.
According to her, even the National Health Insurance Scheme (NHIS) does not cover eye treatment in the area. These persons are, therefore, referred to Jirapa anytime they require optician attention. Some watchers have blamed the absence of an eye clinic in the community for the worsening situation where many more people are getting visually-impaired with each passing month.
But that’s not the only health care challenge here. The facility remains a controversial one, with disagreement over ownership, stifling healthcare delivery.
As medical assistant tells me, the Ghana health service – established facility has been taken over by The Christian Health Association of Ghana (CHAG), who are managing the facility alongside the Ghana Health Service. This leaves the running of the facility in a cloud of uncertainty as the Medical Assistant employed by the GHS finds herself literally battling counter instructions from CHAG’s representative who’s the only midwife here.
While the controversy lingers on, the small facility lacks requisite equipment to run. Madam Elizabeth tells me the small cage-sized detention room has only one bed, while it also conducts family planning counseling in the open.
She however makes an appeal for the facility to be opened up, to create more space for clinical activities.
“We are very constrained here. The closest place we refer severe cases, including eye complications, is Jirapa, which in itself is some miles away,” Madam Elizabeth mentioned.
“We get some of the visually-impaired persons coming here for treatment, but we do not have an eye clinic or center here. It’s worrying, especially considering our situation here where we have all these people suffering from glaucoma, and other eye defects”.
This position is rightly corroborated by Assembly Member Mr. Kabiri, who is of the view that some of the visual impairment could have been avoided with prompt medical attention.
According to him, “during the period when the cattle were brought in for vaccination, the bites from the accompanying black flies, if treated, may just have saved many of these people”.
There is also the group who believe fervently in tradition over medicine. For these people, once they discover discomfort in their sight, they resort to herbs and local remedies.
“Our people are very traditional in their approach to many things, especially when it borders on health matters. Several years ago, when these persons began feeling some discomfort in their eyes, their first point of call was the bush, where they used all sorts of herbs, to treat themselves,” Mr. Kabiri revealed.
As a result,” before they knew it, the condition had worsened. That is just one side of the story. There is also the group who simply had no clue. They attribute the condition to advancing age.”
In terms of facilities, Medical Assistant, Madam Elizabeth revealed “we have one small room, with one bed, which is almost below my sheen level. As you’d imagine, we have to break our backs, to cater for patients.
But that is not all, there’s virtually no space here, for even family-planning counseling – we sit in the open, under the mercy of the harsh weather conditions in this part to do this,” she further noted.
School is on vacation because it’s Christmas holidays. Children are up and about. Some are helping on their parent’s gardens, others herding cattle but head teacher of Karni Basic School, laments dropping education standards and low attendance due to poverty levels here.
Head teacher, Justin Dofobari, explains that out of 27 registered and presented students for the 2015/2016 Basic Education Certificate Examination (BECE), a pass per cent of 17 was recorded district-wide.
Mr. Dofobari admits, the results could have been much better. He attributes the poor performance to a number of factors which include lack of proper teacher-pupil monitoring and supervision.
“The school has a total population of about 360 from the kindergarten to the Junior High School stage. I can tell you, some of the classes have over 70 pupils, making it difficult for teacher supervision,” the head teacher noted.
As if that is not troubling enough, “many of the classrooms lack simple furniture – tables, chairs, cupboards and the like. Even course books are hard to come by.”
He also mentioned that nearly all of the pupils especially those at the kindergarten and primary levels, sometimes report to school without uniforms and shoes.
Uniforms from District Assembly
“The district assembly last year brought some uniforms but we had to distribute them to selected students because they were inadequate. This means the majority of them did not benefit. We have some pupils reporting to school in tatted clothes and others barefooted,” Mr. Dofubari added.
According to the head teacher, despite the crowding in some of the classrooms, many more children do not attend classes – he attributes the situation partly to low levels of education of the parents, many of whom do not find the need to get their wards into school.
Social support & LEAP
The intriguing story about these people here in Karni is one which is laced with a lot of mystery. Government’s Livelihood Empowerment Against Poverty (LEAP) program, according to the assembly member here, is not covering all these persons living with disability.
There have been appeals from various quarters to open up the program to account for all the physically-challenged individuals and their families here, but that remains to be seen.
Concerns however, over the delay and sometimes non release of the disability common fund is also rife. We also gather accessing the disability fund by persons at the Lambuisse-Karni District Assembly has been another challenge they have had to deal with….
As one of the most deprived communities in the Upper west region, getting support from outside has been pretty difficult. Some NGOs and corporate bodies tend to focus on the communities in and around the regional capital, to the detriment of villages like Karni, which is a community desperately in need!
Some opinion leaders believe some of the donations that are brought to the community, get diverted by folks at the district assembly – a claim the assembly denies.
NGOs, Corporate Bodies To Blame
The Lambuisse-Karni District Assembly rather blames NGOs and other corporate bodies for going into the community to give out items, without prior approval and consent of the assembly’s Social Welfare department.
But some of these organized groups argue they want to get the items directly to the impoverished families here without third party intervention.
Some call it a cursed village! Others call it a village of circumstance! For years, there have been efforts to uncover how one community of about six thousand people came to have nearly 400 of them suffering one form of disability or another.
Karni could pass easily for a ghost town – with first-time visitors greeted with hardly anyone on the street. It took us several hours to arrive here from the Upper West Regional capital that Tuesday afternoon.
As we take the dusty road that leads to it, I notice the scant presence of human existence – barely a sight of anyone. The vegetation is completely dried out with large portions of farmlands burnt, leaving patches of black soot in the affected areas.
The air was so dry – you could spot some straying donkeys feasting on the remnants of the harmattan-affected vegetation.
The afternoon sun is unforgiving, in an expanse many, many meters away are dots of mud huts, which we’ll later find out are homes of the many physically-challenged people living here. Karni stands bare and silence prevails all around, except for a group of ‘pito’-drinking young men and women under a street hut, who all turn to catch a glimpse of our vehicle, in the dust cloud.
Just before the turn to our destination, on the left of the stretch, two persons appear in a distance, one leading the other on a footpath – the two were apparently visually-impaired old women, who expectedly were helping themselves towards their homestead, the picture became clearer as we drew closer.
Minutes later, another inhabitant consigned to an old wheelchair, rode past our stop. She was gracious in her warm afternoon regards to us. She’s probably over sixty and again probably got one or maybe two of her limbs amputated.
Chill sweeps over me
A sudden chill sweeps over me – many thoughts running quickly through my head. The eeriness of the place could be frightening, but not as the thought of a cursed village; left us all quite intrigued, I must say.
As we’d later find out, some adjoining villages believe Karni is cursed!
But, assembly member of Karni Central, Mr. Kabiri Luanga, gives some explanations to demystify the curse tag of the Karni community.
According to him, many decades ago when the community used to be the vaccination center for cattle in the upper west region, some cattle brought in to be vaccinated, came along with some disease-carrying black flies which are believed to have transferred various diseases to the people.
“Our village is not cursed, as far as I know. Many years ago, this community used to serve as the central point where cattle from across the region were brought for vaccination. During those times, the livestock that came in came along with black flies which carried disease pathogens,” Mr. Kabiri explained.
He added “many of the villagers who came into direct contact with these flies, contracted diseases through bites – that’s the beginning of our woes.”
“It did not end there, some of the vaccination for the six killer diseases in children was unavailable here, therefore many of the children at the time developed polio, measles and others, according to the records,” he revealed.
“The poor health delivery system here meant that many of our people developed several complications from very simple ailments – which could have been treated.” But there’s also the group who returned to the village after settling several years in other areas and are beloved to have brought some of the diseases along with them.
It appears a mix-bag of possible causes may be responsible for the plight of scores of inhabitants here.
Cursed or not, Karni remains a strange village. Strange in many ways than one.
Medical conditions gone bad?
According to medical experts, visual impairment is a major source of morbidity in the world, with close to 300 million people living with one form or another.
About 80-90% of this number, however, are people living in low-income-earning communities in developing countries.
Resident in Ophthalmology at the Korle-Bu Teaching Hospital, Doctor Vera Beyuo gives an indication of the severity of the matter and how many of us are exposed to some of these, inadvertently.
“Eighty per cent of visual impairment conditions are treatable and preventable. The commonest defect however is cataract – which is associated with clouding of the lens and improper transfer of images,” Doctor Beyuo noted.
“Aside that, there is glaucoma, which is caused also by a number of factors – diabetes, injuries, infections, among others, with immune conditions also causing the whitening of the cornea. It damages the eye’s optic nerve and can result in vision loss and blindness,” she further explained.
However, “with early detection and treatment, an individual can often protect their eyes against serious vision-loss, especially as the condition has no glaring and easily recognizable symptoms”.
According to Doctor Beyuo, many of these visually-impaired persons in Karni may have developed the condition but due to the absence of pain or other manifest symptoms, did not take action till it degenerated into blindness and visual impairment.
Without treatment, people with glaucoma will slowly lose their peripheral (side) vision. As glaucoma remains untreated, people may miss objects to the side and out of the corner of their eye. Over time, straight-ahead (central) vision may decrease until no vision remains, medical experts reckon.
Doctor Beyuo further reveals ‘infectious causes – trachoma, onchocerciasis, despite their reduced incidence across the country, still remains in some communities with Karni, a good case in point, per the account of the community leaders.’
“Uncorrected refractive errors also cause visual impairment and, subsequently, leads to blindness. In many instances, however, it can be corrected with prescribed eye aids.” The causes of increasing cases of visual-impairment and blindness among Karni residents are varied and very remote in some instances.
According to the American Academy of Ophthalmology, “measles is just re-emerging as a threat in developing countries, the disease has long been a leading cause of childhood blindness worldwide”.
One study estimates that measles causes up to 60,000 cases of blindness a year globally, with poor access to measles vaccination and malnutrition often correlating with higher rates of blindness in the most affected countries, including Africa.
It is believed that some of the conditions, among residents, here could have resulted from measles and other chronic diseases, which went unattended. To salvage what is left of the Karni community at this point, Doctor Beyuo prescribes regular medical outreaches.
“Despite Ghana having about hundred ophthalmologists catering for the needs of a population of over twenty six million (out of which number the specialists are not evenly distributed throughout the regions), it is possible to carry out eye-screening outreaches to very deprived communities, such as Karni,” Doctor Beyuo suggested.
This way, many of those whose condition are not ‘hopeless’ as yet, can get their condition properly managed, while others who are just reporting with early symptoms can be identified and given some special attention.
It is the case that many deprived communities in the cities’ outbacks lack eye clinics and specialists to cater for their eye needs – a phenomenon many have attributed to the increasing cases of visual impairment and blindness in these parts.
On the issue of the black flies, ‘apart from the use of drugs on bi-monthly basis, that kills the larvae, there should be intermittent spraying of the kraals, and other areas where cattle are usually kept to prevent the spread of the infection,’ she advised.
While she believes all hope is not lost for some of the affected residents here, the earlier something drastic is done about the plight of the people, the better.
According to her, once the screening is done and the specific causes of the eye defect and impairment are identified, “some measures could be put in place to slow down the pace at which the disease progresses. Giving prescribed eye drops could also lower the pressure and preserve the little function of the eye that is left”.
Sadly, in the case of some of these people, the margins are very tiny and may be just a tad late – but there may be some hope on the horizon.
Doctor Beyuo, however, warmed that not all eye disease are infectious, therefore people should not stigmatize persons suffering some of these conditions.
“Blindness is not spiritual. Visual impairment is not a curse. Don’t self-medicate. However, not every eye problem is a bacterial infection….therefore see a healthcare provider, get assessed and treated appropriately, “she cautioned.
Social welfare dream (Organized model systems)
Over 650 million people are estimated to be living with disabilities globally, of whom more than 500 million are in developing countries. To help protect their rights, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities in December 2006.
The convention and an additional optional protocol are intended to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms for all persons with disabilities – UN.
In some states in America, thousands of citizens with disabilities are employed by facilities known as sheltered workshops where they among others ‘stuff envelopes, package candy or scrub toilets for just scraps of pay, with little hope of building better, more dignified lives.’
Many states, inspired by a new civil rights movement to integrate the disabled into mainstream life, subsidise nearly 300 sheltered workshops and now among the most segregated states in the nation for working people with intellectual disabilities, according to reports.
More than a decade after the U.S. Supreme Court ruled that Americans with disabilities have a right to live in the mainstream, many disabled persons and their families say they still feel forsaken — mired in profoundly isolating and sometimes dangerous environments they didn’t choose and can’t escape, according to an article authored by Chris Serres and Glenn Howatt on nfb.org.
Vermont has abolished sheltered workshops and moved most of their employees into other jobs.
Best Countries for Unemployed or Disabled
In a guardian article published on its website titled: ‘Which Are the Best Countries In the World To Live In If You Are Unemployed or Disabled’ authored by many contributors from countries with specific provisions for disabled persons, the following were pointed out:
In Germany, Disabled children are automatically insured with their parents in the health insurance scheme without having to pay any additional costs. Children and students with disabilities are entitled to various rights, including wheelchair access and a sign language translator in certain circumstances.
Companies receive benefits and tax breaks for employing people with disabilities, while Grants are also available of up to €2,557 per project to adapt the home of a disabled person to their individual needs.
They are also entitled to housing benefit of up to €1,500, depending on the severity of the disability; help towards taxi fares to enable mobility and participation in normal life; and free public transport.
In Ireland, the overarching criteria for disability allowance is that individuals are residents of Ireland and have a disability that is expected to last for at least one year and substantially restricts a person from undertaking work that would otherwise be suitable for them.
“Deciding officers”, appointed under Irish social welfare legislation, determine who is entitled based on the merits of each individual case. Applicants are required to have their doctor complete a medical report which is reviewed by one of the department’s medical assessors.
Payments are means-tested above €50,000 of any capital. The maximum payment for those aged 26 or over is €188 per week for individuals. Those with children receive extra. There are about 2.6 million disabled people living in Italy, 4.8% of the population, who describe themselves as unable to perform essential daily tasks independently.
Benefits for disabled people are recalculated every year based on inflation and the cost of living.
In 2015, disabled Italians between the ages of 18 and 65 were entitled to €279.75 a month. They also receive tax breaks to buy certain goods such as special vehicles and adjustments to the home.
“In Italy generally, disabled people are not necessarily encouraged to work and the funds they are given are not enough to support an autonomous life,” according to the Academic Network of European Disability Experts.
People with physical or learning disabilities, as well as those with mental health conditions, are eligible for government assistance in Japan. According to the Japanese cabinet office, 7.4 million people belong in these three categories.
Adults with Severe Physical and Mental Disabilities
Adults with severe physical and mental disabilities with an income of less than ¥3.4 million yen (£20,000) are eligible for ¥26,800 yen (£153) a month, while families with children under 20 with physical and mental disabilities can receive ¥50,050 or ¥33,330 a month depending on the severity of the disability.
Applicants for disability grant in South Africa are assessed and diagnosed by a doctor who recommends whether their impairment is severe enough to qualify. The South African Social Security Agency makes the final decision.
A disabled person is typically eligible for a grant of R1, 350 (£76) per month – equivalent to 9% of South Africa’s average wage of R14, 731 per month.
How did they do it? Remains the biggest unanswered question, one would ask.
Across Africa many governments cite financial constraints as an impediment to promoting the rights of the disabled and marginalized groups in societies. But taking a leaf off their book may just show the way – while we address our minds to some of the special schools and homes which are failing us.
‘Useless liabilities’ versus Survival of the fittest
In the streets of Accra, hundreds of physically-challenged persons accost moving vehicles, halted by the traffic lights and beg for alms. Most do so in very untidy and unkempt clothes, in wheelchairs, skates, on crutches and some with their white cane, aided by another to navigate the streets, while the less-fortunate drag themselves on their buttocks, hands and knees.
Drive through some of the capitals major roads – and you’re sure to be met by one, two, or more of these persons, begging for a coin.
From where I sit aboard the public transport, the view from outside is wide. Just as the vehicle screeched to a halt before the traffic lights at the intersection around airport junction on the Accra-Madina stretch, a visually-impaired old woman, being held and dragged along by a young man, possibly in his early 20s, approaches the next window and begins to sing.
While at it, she stretches her arms towards the occupant close to the window and recites why she should be helped because of her condition. Magnanimous as the passenger was, he was able to spin a one cedi coin into the hand of the begging woman, before the lights could switch from amber to green. The sight is just too common!
There have been concerns among a section of the public concerning these beggars, whom they describe as nuisance to movement in and around the capital, but when society fails these people, what possibly is the way out?
Karni provides some example – giving up and resorting to street-begging may not end the woes, but engaging in some meaningful work, no matter how small may just be an escape – one which those at Karni are taking advantage of.
Efforts & Appeals
As of 2010, it was estimated that about 1.8 million Ghanaians — about 5 per cent of the total population — were in some fashion disabled, with problems of sight, hearing and speaking in the lead, according to the Africa renewal website.
In 2006 however, Ghana’s law-making body (parliament) passed the National Disability Act, intended to ensure that people living with disabilities enjoy the same rights as their able-bodied counterparts.
The act offers a legal framework to protect the rights of physically and mentally disabled persons in all areas of life, from education, training and employment to physical access and health care.
It also was intended to promote the creation of an environment that will advance the economic well-being of disabled people and enable them to function better.
But the lack of political will by some of the leaders since the passage of the act, leaves much to be desired.
A renewed sense of political will is urgently required, despite the existence of international conventions, the proclamation of an annual International Day of Persons with Disabilities (on 3 December) and other like programmes.
While we await that to be done, people with disabilities still face discrimination and receive little support across much of their families, homes, communities and country.
The needs of the people of Karni are many. Here are a few – clothing, farming implements, crop seedlings, gardening tools, school uniforms. Footwear, classroom furniture, teaching and learning materials, irrigation systems (disability-friendly systems), medical outreach, eye-screening programs and an eye clinic.
These are but a few of the needs of people at Karni, where life is throwing the physically-challenged persons all sorts of lemons.
While the hundreds of physically-challenged persons here continue to strive for themselves and their large families, assistance from outside appears almost nonexistent.
For them, hope remains hope. But for their contact with the Macedonia Jerusalem Mission last year, an already bad condition could have worsened. The NGO is, however, calling for donations from well-meaning Ghanaian citizens and groups to be able to bless the lives of the scores of hard working physically-challenged persons here.
And OH! No matter the type of people we are, in our individual spaces and general life spheres, there are useful lessons to be learned from persons living with disabilities.
There’s no getting around it; having even the slightest form of disability is certainly a truly difficult ride in life, these people have to negotiate – but the life lessons without question makes it a near perfect bargain.