New cases of leprosy are still being detected, globally – Washington

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Henry Uche

Washington Uba, a documentary photographer and social activist, has concerned himself with issues affecting the lowest end of the Nigerian social fabric. His major concern is for people affected by leprosy. His advocacy to raise awareness for this forgotten lot intensifies as he clicks away with his camera.

In this interview, he tells Daily Sun that not only has the world forgotten about leprosy, but they have also completely forgotten about the people affected by the disease, due to stigma because the effects are exacerbated by prejudice.

Washington Uba’s project in the last seven years has taken him to all the leprosy colonies across Nigeria and in his research he has found that new cases of leprosy are still being detected every day, globally.

His exhibition on the leprosy colonies in Nigeria to mark this year’s World Leprosy Day was held recently in Lagos.

Can you tell us about your experiences in the last seven years of documentation and research on leprosy and people affected by it?

Leprosy has tormented humans throughout recorded history. Throughout its history, leprosy has been feared and misunderstood. For a long time leprosy was thought to be a hereditary disease, a curse, or a punishment from God. Before and even after the discovery of its biological cause, leprosy patients were stigmatized and shunned

Even in modern times, leprosy treatment has often occurred in separate hospitals and live-in colonies called leprosariums because of the stigma of the disease

This disease has been so prevalent in various areas as certain times throughout history that is has inspired art work and influenced other cultural practices.

I went into research in order to understand the cause of this ailment and discovered that it was the oldest ailment in the world with about 250,000 people getting infected each year, globally. Having discovered this, I embarked on a project of seven years, going from one leprosy colony to another across Nigeria. And in going to other states, I found out that among the poor are the most terrible and forgotten and they are those who suffer from leprosy.

The first place I visited was Itu in Akwa-Ibom, the oldest leprosy colony in Nigeria, built in 1928. Then I went to Uzuakoli in Abia State, built in 1934. After going round the colonies for seven years I entitled the project/exhibition, the “Images of God,” and exhibited in commemoration with the 2019 World Leprosy Day.

What do you think that the world can do to help these people?

The earlier the entire mankind begins to understand that these sufferers were once like any other healthy person with ambitions and dreams but were down by no fault of theirs and we extend kindness and help to them, the better we can appreciate their plight. They once walked briskly but lost their limbs. In their eyes, you could see broken dreams and there is no hope for tomorrow.

In the male ward at the Ossiomo leprosarium, in Edo state is cluster of men with grim faces lying on beds. They belong to no one in particular, but are among the millions of people who are affected with leprosy, globally.

They were once active and lived among their kith and kin. They had dreams and aspirations until fate dealt a cruel blow on them. Today, they live in total abandonment, pity and dejection. They depend on handouts from good spirited people

If we continue to play the lukewarm attitude to it the whole world would suffer greatly for it is increasing rapidly. If the disease could be given the same attention which was given to the HIV patients the disease would have decreased by a great fold. Everyone who came for the event was be made to sign on the commitment page and to help us tell a friend about leprosy.

The annual exhibition is my own way of raising awareness to the plight of this forgotten group of people

Can you give us an insight into the exhibition you held recently?

My exhibition was in commemoration of the World Leprosy Day, I chose the title ‘leprosy story board awareness campaign’. It was a full documentation on leprosy, how it came about, the number of people affected.

It was interactive, and medically challenging. There’s no specific date for the day but it is being celebrated globally on the last Sunday of January. It is linked to a French philanthropist in 1956 a Catholic passionate for assisting people with leprosy.

Many people have the notion that leprosy isn’t curable, but it is. That’s where the challenge is.

You say that this disease is curable. I want to ask if they are still new cases of them being detected?

Like I said earlier, it is curable, however, there are number of new cases reported globally to World Health Organisation (WHO) External.

Although there remains some uncertainty about the mode of transmission of leprosy, most researchers agree that it is spread from person to person in respiratory droplets or nasal discharge.

While human-to-human respiratory transmission is thought to be the likely cause of most infections, exposure to insect vectors, infected soil, and animal reservoirs may also be possible modes of transmission.

Most people are immune to leprosy. In endemic areas, subclinical levels of the disease are common, but only in a select few cases will the infection progress to clinical disease levels.

As a matter of fact, in 2016, the new cases of about more than 200,000 were reported and close to 19,000 children were diagnosed with the disease in 2016, more than 50 a day.

Even as we speak now, an estimated 2 to 3 million people are living with leprosy disease-related disabilities globally.

In the same year, the countries with the highest number of new diagnoses were India, Brazil, and Indonesia, followed by some of the nations in Africa and two-thirds of all new cases of the disease are diagnosed in India. Of course, India remains home to a third of the world’s poor, a group disproportionately affected by the disease.

As a long term advocate and campaigner for people suffering from leprosy, what do you think are the key interventions needed to help fight this disease?

In 2016, WHO launched the Global Leprosy Strategy 2016–2020: Accelerating towards a leprosy-free world, which aims to reinvigorate efforts to control leprosy and avert disabilities, especially among children still affected by the disease in endemic countries.

The strategy emphasizes the need to sustain expertise and increase the number of skilled leprosy staff, improve the participation of affected persons in leprosy services and reduce visible deformities as well as stigmatization associated with the disease. It also calls for renewed political commitment and enhanced coordination among partners while highlighting the importance of research and improved data collection and analysis.

The first key point is detecting cases early before visible disabilities occur, with a special focus on children, that way, there will be reduction in disabilities and transmission too;

Another way is targeting detection among higher risk groups through campaigns in highly endemic areas or communities; and improving health care coverage and access for marginalized populations.

Endemic countries need to include other strategic interventions in their national plans to meet the new targets

Aside from the aforementioned, there should be screening all close contacts of persons affected by leprosy. The relevant health agencies should promote a shorter and uniform treatment regimen; as well as make concerted efforts to incorporate specific interventions against stigmatization and discrimination. The effects of leprosy are exacerbated by the prejudice surrounding the disease. I can tell you that the issue today, is not just the disease that is forgotten, but the people too, have completely been forgotten due to stigmatization

You are in the forefront of the global campaign to end stigmatisation of people affected with leprosy. Why is it so important to you?

It is shocking to find out that in 2017, over 210,000 people were diagnosed while millions more go undiagnosed. This is not right

The global campaign to end stigmatization of people affected with leprosy is a call to make us see leprosy sufferers as images of God and to show them love. Sufferers living in leprosy colonies are lacking in social amenities like water and, the hospitals and houses in the colonies are dilapidated.

I am passionate to raise awareness about the disease which many people believed had been eradicated, to call to end stigmatization of the people with leprosy and, to seek redress about their living condition”. He noted that negative social attitudes prevent people with leprosy from seeking medical help and therefore, delay early diagnosis and treatments.

That is why we are calling for an end to the stigma, prejudice and discrimination of people affected by leprosy and their families. We deploy the use of documentary photography through exhibitions to create awareness on the challenges facing people affected with leprosy. The time is now to lend your voice, too

I want the world to know about these people’s plight. A lot needs to be done to alleviate their suffering. Besides the governments, they need the support of people, NGO’s and corporate bodies. I am resolute that with our collective effort, we can help to lessen their burden.”

As an activist who speaks for the voiceless, what exactly is your instrument?

Art is my instrument for social change. I have a strong tool to fight this battle. My tool is photography and through exhibitions, I am determined to continuously create awareness on the plight and pains of these people.

I see it that if I don’t do it I won’t be fulfilled or happy. I have over the years concerned my work with the poor as a documentary photographer. I didn’t start with leprosy, but documenting destitute. Lagos was my first point of call. Being a charity person before my university days, after graduating, I started an NGO called Charity Care Network Initiatives.  In 2005, art came into it through photography when I began the documentation of the extremely poor people’s environment. And having worked for charity for over 15 years, in 2005 and 2006, I went documenting the streets of Lagos and found a particular place in Okobaba, Ebute Metta, where a family support destitute home was built. I realised that this was where I wanted to be. I made friends with them and went there during the monthly festive period to give them handouts and know how they are faring.

Art has played a vital role in this: using photography, I generated funds and handouts with the pictures I had taken. In 2006, I went into exhibiting my work, where I had my first ever exhibition in National Museum. Former Sunday The Guardian newspaper, Arts Editor, Jahmna Anikulapo, gave me the opportunity to exhibit first under the auspices of Committee for Relevant Art (CORA) at Lagos State Book and Art Festival (LABAF). I realised, that I could raise money from this exhibition. So I went about exhibiting from one place to another. I have since exhibited in National Museum and also National Theater several times, until it grew and went to other states.

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