8 December 2023

Fighting stigma and discrimination: influencing electoral reform in Nigeria for people with leprosy and disability

The Leprosy Mission Australia

8 November 2023

The recent referendum was a great example of how our electoral system works – even if you didn’t agree with the result. Not only can everyone vote but we are all required to vote. A visitor from Nigeria said to us: “This could never happen in my country. Polling booths are vulnerable and volatile places, but you all just queue up calmly and even have barbecues to celebrate your vote. Here, you are all required to vote but that is not the case in my country; some are even excluded from voting. “

Australian donors and taxpayers are helping restore basic human rights – along with dignity and joy – to some of the most vulnerable people in Nigeria who are affected by the stigma and disability of leprosy.

Many Nigerians affected by leprosy were not only shunned by their community and relegated to a life of poverty and discrimination, they were also excluded from exercising their basic right to vote.

That’s all changing under a partnership between The Leprosy Mission Nigeria (TLM-Nigeria) and The Leprosy Mission Australia, supported from the Australian Department of Foreign Affairs and Trade and the Australian High Commission in Nigeria.

This last month (October 23), Pius Ogbu Sunday, Head of Programmes and Operations with TLM-Nigeria, visited Australia to give thanks for supporting an electoral reform campaign which changed government policy and practice, and delivered stigma-busting training.

“That extension of love (from Australia) has made a meaningful impact,” Mr Sunday said. “It has given people affected by leprosy and disability a sense of dignity and a sense of inclusion in society again.

“This investment has resulted in the outcome we are celebrating: a victory to humanity, that has brought smiles to the faces of persons with disability and persons affected by leprosy.”

Picture: Supplied

As a keynote speaker at the Australian Council for International Development (ACFID) National Conference 2023 in Sydney on 19 October, Mr Sunday shared the life-altering changes being achieved in Nigeria through perseverance and strategic collaboration, particularly with Australia.

While people affected by leprosy (also known as Hansen’s disease) have the same right to vote as any other citizen in Nigeria, they were disenfranchised by inflexible voter registration systems and stigma.

About 3,000 new cases of leprosy are reported each year in Nigeria. Of those, 10 per cent are children and 15 per cent already live with visible disabilities, which is evidence of ongoing transmission and late diagnosis.

Picture: Supplied

For Mr Sunday, the ACFID conference theme ‘Global Development 2.0 – disruptive dynamics, inspired ideas’ resonates with the disruptive change he is helping lead to improve the lives, and protect the rights of people affected by leprosy in Nigeria.

“When you want to register for a voter’s card in Nigeria, the process will require fingerprints to be taken,” Mr Sunday said. “So if you do not have a finger, there is no way you can be registered and people affected by leprosy are largely within this category of people.”

A second group of people with visible deformity to the face and hands caused by untreated leprosy, found themselves blocked from entering voter registration offices because people were afraid to be near someone affected by leprosy.

The Leprosy Mission undertook a multi-layered campaign which involved building the capacity and capability of people affected by leprosy to advocate on their own behalf, addressing stigma and misinformation among electoral commission staff, and building a coalition of funding and support.

When TLM-Nigeria representatives including Mr Sunday met with the Independent National Electoral Commission (INEC) of Nigeria to advocate for change, it became the start of a national process of education and destigmatising leprosy across the electoral system.

“We simply said to them, we demand for a change because there are thousands of people that are being affected. Thousands of people whose rights are being violated,” Mr Sunday said.

“The fact that they’ve lost their fingers should not mean that they cannot have a voice to determine who makes decisions on their behalf, who will look after them, or for them to even vie for positions of authority in the society.

“The electoral officials said, ‘ok, we need to understand the issues of leprosy.’

“In that conversation we realised that wow, they never knew that leprosy is curable. They didn’t know that leprosy is not a highly infectious diseases, that it’s not like COVID or the common flu.”

Together with INEC Nigeria, The Leprosy Mission identified that training for staff across the electoral commission was a necessary first step and funding was secured from Australia, through The Leprosy Mission Australia.

Ongoing advocacy was needed to ensure the commitment to training was followed through with a timetable of dates and locations when electoral commission staff would be released to undertake training.

The Leprosy Mission helped facilitate the introduction of IDEA (International Association for Integration, Dignity and Economic Advancement) to Nigeria as a platform for people affected by leprosy and advocated for IDEA to be included within the umbrella of the Joint National Association of People with Disabilities which previously excluded leprosy.

“This opened up the opportunity to have a relationship with the disability organisation to begin to advocate to address the stigma and discrimination affecting people by leprosy,” Mr Sunday said.

A non-violent protest outside the gates of the electoral commission and The Leprosy Mission engaged the National Human Rights Commission and the Public Complaints Commission in the campaign for electoral reform.

The Australian High Commissioner to Nigeria was invited to the first training and the event was covered by the national media.

The training program was followed by visits to the major leprosy communities in Nigeria to work in collaboration with the local electoral officers and support people affected by leprosy to register to vote.

“At that time, the electoral commission made an adjustment to the policy for registration,” Mr Sunday said.

“We went with them to the field and we were there to witness it firsthand where they now had people affected by leprosy come with no fingers and they were registered with facial recognition. The machines were adjusted to accept facial recognition as well (as fingerprints).

“So this happened across these communities and we had lots of people for the first time in their life, even though they had no fingers, they had their voters card.

“And in the 2023 February election of the Presidential, the House of Representatives and Senate elections, they voted for the first time.” Amina along with tens of thousands of persons with disabilities across the country participated to vote.

“For the first time in my life I felt a sense of dignity and self-worth to know I was part of something very important.” Picture: Supplied

“For the first time in my life I felt a sense of dignity and self-worth to know I was part of something very important.” – Amina

On behalf of those people and The Leprosy Mission Nigeria, Mr Sunday expressed heartfelt thanks.

“Thank you to the people of Australia, to the Government of Australia, who have stood with vulnerable people thousands of kilometres away, who they may never know their name, they may never see them face-to-face, for yet have made a tremendous impact,” Mr Sunday said.

“An impact that has brought change that will resonate not only with those who have benefited directly today, but for many people for years from now who may suffer one form of disability or another that results in the loss of their limbs or hands, yet they will still be able to exercise their rights.”

“The Christian principle of seeking the outcast is a big principle of The Leprosy Mission – no one is outcast in the kingdom of God.” – Greg Clarke

In his new role, CEO Dr Greg Clarke wants to get the story out that Australians can help knock leprosy on the head in places like Nigeria within a generation – zero transmission, zero disability, zero stigma.

Picture: Supplied

“The Christian principle of seeking the outcast is a big principle of The Leprosy Mission – no one is outcast in the kingdom of God. And Leprosy Mission really puts that into action. It’s the expression of that theological principle with its sleeves rolled up: get on and seek and seek the people who are outcast and care for them like Jesus would have cared for them.”

With the worldwide Leprosy Mission turning 150 next year, the Australian branch is looking at ways of raising awareness of the work that still needs to be done.

“We still need to mark what’s been achieved and keep working on the discrimination issues,” says Clarke. “We don’t have many cases of leprosy in Australia. Praise God for that. But our role is to find the right projects to support, to help build the capacity of those projects, offering expertise sometimes, but generally offering monetary support. This mission is a great expression of gospel truths that Jesus came to seek and save the lost, and that’s spiritual and physical. As we care for those who are the most rejected and outcast, we are Christ-like.”

The Strengthening Integrated Neglected Tropical Disease Control in Zamfara project in Nigeria is supported by the Australian Government through the Australian NGO Cooperation Program (ANCP). Thanks to ANCP this project is able to help improve the well-being of people affected by leprosy, other Neglected Tropical Diseases and disability in Nigeria.

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