Q&A: Why Treating Leprosy as a Special Disease Violates the Rights of the Person Affected by It

Dr. Arturo Cunanan is the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines and one of the most experienced experts on Hansen’s disease, also known as leprosy, in the world today. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 25 2019 – His multiple awards and degrees aside, Dr. Arturo Cunanan is known as a people’s doctor; one who has profound belief in the human rights of every person affected by Hansen’s disease, commonly known as leprosy.
Considered one of the most experienced experts on the disease in the world today, Cunanan is currently the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines. He is the first director of the hospital who is a direct descendant of people affected by Hansen’s disease who were isolated and segregated in Culion. The island of Culion, where the hospital is based, was originally set up as a leper colony at the turn of the 20th century, with the hospital been founded to solely treat patients with Hansen’s disease. However, from 1994, the Culion Sanitarium and General Hospital began general hospital services.

Currently in the Marshall Islands, in the northern Pacific, to review the national leprosy programme for the atoll nation, Cunanan tells IPS about the importance of viewing leprosy as an ordinary disease and how the failure to do so leads to continuous stigma.

“Integration of leprosy in the mainstream is important and it is also important to see that leprosy is treated as an ordinary disease and not as a special disease. Leprosy then becomes an ordinary disease. But if you treat leprosy as a special disease, then those with leprosy can become more stigmatised. People who have leprosy, can live a normal life. This is the message,” he tells IPS.

Recipient of several national and international awards, including the 2015 Gandhi Peace Prize, Cunanan earned his Masters in Public Health and Hospital Administration at the University of the Philippines and a Doctorate (PhD) in Health Systems and Policy at the National Institute of Health, University of Leeds as an International Ford Foundation Scholar.

He is also a consultant with the World Health Organisation and has provided his leadership in reviewing the National Leprosy programmes across the Micronesia region.

Cunanan is also the implementer of Sasakawa Memorial Health Foundation/Nippon Foundation’s projects in Culion and the Philippines that are related to leprosy and human rights, preservation of leprosy history, and various socio-economic projects that improve quality of life of people affected by leprosy and their families.
Excerpts of the interview follow:

Inter Press Service (IPS): Can you elaborate on how treating leprosy as a special disease leads to more stigmatisation and violates the rights of a person affected by it?

Arturo Cunanan (AC): Leprosy is one of the oldest known diseases in human history. It’s a biblical disease; there are instances of Jesus meeting men suffering from leprosy—men who were described as unclean and who became clean after Jesus touched them. The fear of leprosy and the social reaction to leprosy—both are are old.

In modern times, we have seen governments bring in laws that were built on the rule of detection and segregation. All of this only alienated a leprosy-affected person further.

But the truth of the day is: leprosy is curable. A person with leprosy can live a normal life. He can get treated—free of charge—for his disease. But, if we continue to treat leprosy as a special, extraordinary disease, it will perpetuate the alienation and it will also perpetuate the fear and stigma.

IPS: What happens when a leprosy-affected person faces stigma?

AC: First, they are socially, economically, and culturally isolated. People in their village, neighbourhood, society stop making contact with them and their families. But it ultimately violates their rights to respect and dignity.
Let me give you an example. In Culion, we get visitors. Some of them ask me if they can visit some leprosy-affected people. I tell them, look around you—everyone here has been affected by leprosy. But they look around and they do not want to believe what they see: normal people, with a normal physical appearance.

What these visitors are expecting to see is a person who has severe physical deformity, because in their minds, they [the visitors] have the image of a leprosy-affected person like that—a demonised image.
So, I tell them, these are people, no matter how severely they are affected by the disease—they are people like you and me, they have a right to a life of respect and dignity. How would you feel if someone looked at you in shock and fear, maybe disgust and gasp? This is what stigma and isolation leads to—the total denial of dignity.

IPS: How does this affect the treatment of leprosy?

AC: There are several reasons why a person affected by leprosy doesn’t seek treatment and social stigma is one of them. The person is afraid that once he has been confirmed as a person who has leprosy, the reaction of society will be severe towards him and his family.

They will not be included in any social or cultural events, nobody will visit them at their homes, and nobody will continue social relations with them. This will affect them economically also, they will not be employed like before. All of this discourages the person from going to the health centre and reporting his condition as he wants to avoid this social stigma.

IPS: You often say that Leprosy treatment needs to be integrated into the general health service system. What does that mean?

AC: This means that leprosy treatment can be made available at the local level. At every health centre, someone should be skilled enough to at least raise suspicion—if not fully detect—when he or she notices a possible case of leprosy.

For example, a person visits the health centre with a visible patch on his or her body which maybe numb. If a staff member at the health center can suspect that this could be a leprosy case, he could share this with the person and refer this person to a more skilled health worker to another clinic that specialises on leprosy. This way, a detection, confirmation and treatment could then begin.
But if the staff member is not capable of this, then he could simply give him an ointment for a skin rash and send him back home.

Especially in the islands, where people live a simple life, in close contact with the sun, sand and salt water, small skin marks like a patch would not usually make a person suspicious of his body or make him go to a leprosy clinic straightaway. But if even one person at the health centre can think that this might be leprosy, it could be a big help.

The third point is, even when the treatment begins, the person affected by leprosy may not take his medicines regularly or may not monitor his health conditions such as a sign of reactions etc on a regular basic and this could affect him adversely. But, if the staff at his local health center can communicate with him that he must report back if there is a reaction, he will do so.
So, it is key to have leprosy treatment integrated in the general health service, so there are skilled workers at every level of the health system.

Words Matter: Trump and the Massacres in Christchurch

Credit: David Symonds in The Economist, 24 July 2008

By Jan Lundius
STOCKHOLM / ROME, Mar 25 2019 – These lyrics are from Fire, the only hit by The Crazy World of Arthur Brown, which in 1968 sold over one million singles. Brenton Tarrant played it in his car while he triumphantly left the Al Noor Mosque in Christchurch, New Zealand. He had just gunned down around 100 unarmed worshippers and was on his way to another mosque to continue the slaughter before Friday prayers ended on 15 March. His murderous rampage finished by the Linwood Islamic Centre, where he could not find the entrance. He shut a man and his wife, whom he encountered outside the building and then shattered a window with a hail of bullets, killing five more inside, while he shouted that everyone had to leave the mosque. A courageous shop keeper rushed out and throw a credit card reader at Tarrant, who rushed back to his car followed by the shop keeper, who shattered the windshield with a handgun he had picked up from the ground. Tarrant run away, but was almost immediately restrained by police who had been able to trace him.

Tennant had by then shot and killed 50 individuals, aged between 2 and 71 years. He had used two semi-automatic rifles, two shotguns and a lever-action rifle, all purchased online from a local gun store. Tennant live-streamed the 17 minutes Al Noor Mosque massacre at Facebook Live. Nine minutes before initiating his killing spree he had posted links to a 73-page manifesto, The Great Replacement, on Twitter and 8chan and emailed it to 30 recipients, among them The Prime Minister´s Office and various media outlets.

Contrary to many Islamist terrorists, who are prepared to die for their beliefs, Tennant wanted to be taken alive and use his trial as an opportunity to appear as a martyr for his beliefs and use his deeds as propaganda for them. Exactly like another white supremacist before him, the Norwegian Anders Berling Breivik, who in June 2011 in cold blood slaughtered 77 totally unprotected and surprised individuals, most of them youngsters between 14 and 18 years. Breivik´s statements in court and his 1,500 pages long manifesto served as an inspiration for Tennant.

Condemnations and condolences arrived immediately after the horrific event. Almost every nation leader sent his/her “heart-felt” sympathies to the people of New Zealand and Muslims around the world. Donald Trump twittered: “My warmest sympathy and best wishes goes out to the people of New Zealand after the horrible massacre in the Mosques.” This was normal procedure, though Trump did three days after his first tweet post another one: “The Fake News Media is working overtime to blame me for the horrible attack in New Zealand. They will have to work very hard to prove that one. So Ridiculous!” Trump had before that declared that he did not view white nationalism as a rising threat: “I don’t really. I think it’s a small group of people that have very, very serious problems, I guess.” Perfectly in line with previously expressed views when Trump had assumed that any Muslim lone wolf slayer represented views of all Muslims: “I think Islam hates us”. This while any person who in the name of some whacky right-wing ideology had massacred people, like the Las Vegas shooter who killed 58 people, according to Trump represented no one else but himself. Such people are according to Trump just crazy: “The wires were crossed pretty badly in his brain. Extremely badly in his brain. And it’s a very sad event.” Trump´s line of thinking may thus be connected with the fact that his administration cut funding for the Department of Homeland Security’s Countering Violent Extremism (CVE) programme – except to address Islamic-inspired terrorism.

Trump seems to express inclinations towards extreme narcissism and cynical populism. He has during his presidency revealed a behaviour characterized by exaggerated feelings of self-importance, excessive need for admiration and a lack of empathy. However, there is apparently also a large dose of populism characterizing his way of expressing himself. Particularly in his cynical use of xenophobia. Trump has repeatedly whipped up fear off criminal elements and potential terrorists illegally crossing US borders: “They’re sending us not the right people. The US has become a dumping ground for everyone else’s problems.” Using vulgar expressions Trump has declared that many migrants come from places he defined as “shithole countries”.

Trump behaves like a performer blinded by his own success and like many others who use the Internet as a political platform he indulges in rude attacks on perceived opponents and enemies. He is fond of using offensive dubs and verbal barrage like an “extraordinarily low IQ person”, against people with other views than his own. Simultaneously he showers inflated praise on those who support him. Candace Owens, an Afro-American conservative commentator and political activist, who Tarrant in his manifesto declared to be the one who had “influenced [him] above all” has by Trump been acclaimed as someone who

    is having a big impact on politics in our country. She represents an ever expanding group of very smart ‘thinkers,’ and it is wonderful to watch and hear the dialogue going on … so good for our Country!

Trump had of course been delighted by Owens´s declaration that “the left hates America and Trump loves it!”

It may be claimed that Trump did not create a maniac like Brenton Tarrant, who in his manifesto hailed the US President as “a symbol of renewed white identity and common purpose.” However, opinion makers who use a derogative language, making fun of “political correctness” and subscribe to blatant generalizations, inspire others to do that as well.

An example of this is the Swedish “shock jock” PewDiePie, who due to his more than 89 million YouTube subscribers, in 2016 was listed among Time Magazine´s “100 most influential people”. PewDiePie, whose real name is Felix Kjellberg, makes millions of dollars annually. My high school pupils made me listen to him entertaining and impressing his overwhelmingly young listeners by his ridiculously exaggerated, puerile and fake melodramatic persona, pouring out expletives and pointless jokes, often precariously close to “forbidden” themes like racism and misogyny. An approach called memeing, i.e. expressing inane and dumb assertions while appearing as if you are serious about them. I did not find PewDiePie´s idiotic ramblings funny, only annoying, though Tarrant wrote in his manifesto: “Remember lads, subscribe to PewDiePie.”

By simply clicking “send” we may all reach any madman with our baseless generalizations. By setting up blogs, vlogs, Instagram – and Facebook accounts we may share our opinions and “facts” without realizing that with this power comes responsibility. A world leader like Trump cannot excuse himself from the fact that his statement about certain immigrants, even if they in this case were criminally charged members of the infamous MS 13 gang, might have grave consequences:

    You wouldn’t believe how bad these people are. These aren’t people. These are animals.

Expressions like “we and them”, indicating a right to mistreat others, even innocent children, in the name of our own superiority, may convince ice-cold mass murderers like Anders Breivik and Brenton Tarrant that they have been doing humanity a service by annihilating “enemies to our way of life”.

No – Trump and PewDiePie, you cannot convince me that you are any innocent bystanders. Each and everyone of us is responsible for his/her own discourse and actions. Not any of us is an autonomous being. For better or worse, we are all connected to one another. Accordingly, our words have effects and do not for one second assume that hate speech is beneficial for human co-existence.

Jan Lundius holds a PhD. on History of Religion from Lund University and has served as a development expert, researcher and advisor at SIDA, UNESCO, FAO and other international organisations.