By Fatima Zahra Muhammad
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 of 16.
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.
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.
Statistics
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 is hard for inmates of the community, a situation in which the community head is optimistic could change with the new government in power.
“For the first time since this colony came to being, the First Lady of the state paid a visit and made donations of N500,000 and foodstuffs to members of this colony.
“We have been around for a while, but this is the first time we have received such a gesture,” Umar said.
Implication of stigma, 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 can also affect people in rural and isolated areas which lack healthcare and infrastructure – the nearest clinic or hospital may be several days’ walk away, making treatment challenging. Poverty is also a major challenge. Some cannot afford to take even a day off work to go to a clinic or to rest and heal when needed,” 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 disabilities to curses or punishment for wrongdoing.
As a result, people choose to hide away in shame, jeopardizing their chances of receiving treatment.
Families guilty of discrimination – 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.
Need for reintegration
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.”
As published by Ebenso B, Ayuba M. ‘Money is the vehicle of interaction’: insight into social integration of people affected by leprosy in northern Nigeria. Lepr Rev. 2010 Jun;81(2):99-110. PMID: 20825114, people affected by leprosy are less likely to be stigmatized because of leprosy impairments than for their incapacity to contribute to family/community finances.
“We also identified micro-credit loans and vocational training as elements of SER for reducing stigma through the mechanism of protecting individuals against the loss of social value, and by facilitating their continued engagement in daily social roles in the family/community.”
The study therefore proposed, among other measures, the inclusion of people affected by leprosy by protecting them against the loss of social value and increasing their contributive capacity.
This suggests a need for the government to reintegrate people living with disabilities back into 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.
The patients in this colony are also faced with a new challenge – The state-owned Ibrahim Badamasi Babangida Specialist Hospital has issued a letter of warning to the colony, claiming ownership of the land.
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.
“Many of us have been receiving treatment here for years. I came here when I was still a child. This is the only place I know. If we are forced to vacate this colony today, we don’t know anywhere else.
“This is why we are pleading with the Niger state government to help us build a place as has been done for persons with visual impairments.”
This report, which is among the requirements for the Disability and Inclusion in the Media Fellowship 2023 is supported by the Africa Foundation for Young Media Professionals.
