Zahra Mohamed
Inequality through the eyes of an ex-leprosy patient. When patches of discoloration started appearing on Bello Umar’s skin and hands, his parents thought it would get better but it only got worse.
Bello Umar, now 50, was diagnosed with leprosy, a disease that is closely associated with severe morbidity if left untreated at the age. An indigene of Sokoto state, Umar has lived his entire life at the Niger State leprosarium, presently leading the community as its head.
“Most of us are not from here (Niger state). We came here to seek treatment and eventually settled. Today, most of us have families and our children have been getting married to people outside this colony,” he says.
Leprosy
Leprosy is a chronic infectious disease which is caused by a bacteria called Mycobacterium leprae. The disease affects the skin, the peripheral nerves, the mucosa of the upper respiratory tract, and the eyes. Also known as Hansen’s disease (HD), leprosy is an ancient chronic mycobacterial infectious disease that is associated with serious morbidity. The disease is communicable to others through contact. Though curable, it continues to be a disease of public health concern because of the stigma associated with it. Leprosy is curable and treatment in the early stages can prevent disability. Apart from the physical deformity, persons affected by leprosy also face stigmatization and discrimination.
Leper’s experiences in Niger state
According to the Nigeria Centre for Disease Control (NCDC), over 3,500 people are diagnosed with leprosy every year in Nigeria, with 25% of patients ending up with some degree of disability.
The NCDC adds that myths and superstitions associated with fear of the disease lead to widespread stigma and discrimination.
The Niger state leprosarium was built by the Christian Missionaries in 1940. Located on the outskirts of Minna, the Niger state capital, the colony is now home to over 200 persons, consisting of leprosy patients and their families.
Many of the inmates in the leprosarium who have been abandoned by their families have sought solace among their peers, with many like Umar, engaging in farming as the only viable means of survival.
Government intervention had been hard for inmates of the community. It is just recently that the First Lady of the state paid a visit and made donations of N500,000 and foodstuffs to members of this colony
Ignorance is the reason for Stigmatisation and discrimination
Experts believe that the myths around leprosy and fear of rejection by family and friends can prevent people from coming forward for diagnosis and treatment, putting them at a higher risk of nerve damage and disability.
“In some other cases, a combination of superstitions, religious beliefs, attitudes to physical deformity, and discriminatory laws has led to prejudice and mistreatment against anyone affected by it.
Leprosy is curable. Its spread is absence of quality health infrastructure. Leprosy affects people in rural and isolated areas where there is lack healthcare and infrastructure. “Lack of access to quality health makes treatment challenging. Poverty is also a major challenge. Some patients cannot afford the treatment” A spokesperson of Leprosy Mission, Nigeria’s foremost nongovernmental organization fighting the scourge says.
It is not uncommon to find communities ostracizing persons like Umar and his peers out of ignorance. More frequently than usual, we find people ascribing leprosy to curses or punishment for wrongdoing from the gods. As a result, people choose to hide away in shame, jeopardizing their chances of receiving treatment.
Family members are guilty of discrimination too– Expert
A disability inclusion advocate and Executive Director, of Global Promoters for Community Initiative, Kalejaiye Olasukanmi expresses concern that the bulk of discrimination comes from family members.
“While the community discriminates a lot, families are also guilty of the same offense. They don’t want people with disabilities to be seen. They hide them instead of allowing them to be free in society.
Olasukanmi maintains that while the passage of the Discrimination Act by the federal government is a bold step towards addressing the menace, much more still needs to be done.
He suggests that the state government step up its efforts to domesticate the Act in the state in a bid to give more support to persons with disabilities.
“The situation for now is not where we ought to be because PWDs have been marginalized. They have been cut off from the system, and governance and hardly engage welfare packages from the government.
“This new law needs to be domesticated because the Act passed by the state government almost decades ago hardly covers the important needs of persons with disabilities.
“The Act by the federal government covers a wider range of issues and better protects the rights of persons with disabilities,” he opined.
Possibility of reintegration and stigma elimination
While Umar was lucky to get treatment for his ailment, he never really got the reintegration he needed. Currently, he makes ends meet by cultivating a small portion of farmland within the leprosarium. “This is my source of livelihood. I have been able to put two of my children through secondary school with what I get from the farm but I couldn’t support them to go further.”
A paper published by Ebenso B, Ayuba,stated among other factors “ people affected by leprosy are less likely to be stigmatized because of leprosy impairments than for their incapacity to contribute to family/community finances. Therefore. the study proposed, among other measures, the inclusion of people affected by leprosy by protecting them against the loss of social value and increasing their financial capacity capacity.
In doing this, enabling policy is needed. More than anything else government must play active role in reintegrating people who had been healed of this disease back into the society to address all forms of inequalities.
Former President, Muhammadu Buhari in January 2022 assented to the Discrimination Against Persons with Disability (Prohibition) Act 2018, a legislation which among other things, seeks stiff penalties for discrimination against persons with disabilities. But not much has been accomplished with the bill as many states, including Niger state, are yet to domesticate the law.
Umar, who spoke on behalf of other members, pleaded with the Niger state government to come to the aid of the community and provide a permanent settlement for patients and their families.This report, written by Zahra Mohamed is done as part of the requirements for the Disability and Inclusion in the Media Fellowship 2023and is supported by the Africa Foundation for Young Media Professionals
