Open Letter to President Emmanuel Macron

Open letter to President Macron of France, organised by an informal, global network of people affected by leprosy.

Dear Mr. President,

As women and men who have experienced Hansen’s disease, more commonly known as leprosy, we were disheartened to read international media reports earlier this month that quote you as calling on Europe to fight nationalist ¨leprosy¨[1]. Other national and international leaders have used similar language in high profile speeches over the past few months.

While it might be good at grabbing headlines, the use of ‘leprosy’ as a negative metaphor has consequences far beyond the political realm, because it perpetuates old and outdated stereotypes and reinforces stigma and discrimination against us, people affected by leprosy.

Leprosy is not a disease of the past. More than 200,000 people are diagnosed each year with leprosy, and there are believed to be more than two million people affected by leprosy who are undiagnosed and untreated. The negative social attitudes towards people with leprosy create a barrier to treatment, and hinder efforts to stop the transmission of the disease globally.

Leprosy is a curable disease. However, women and men affected by this disease are still marginalized and excluded in many places around the globe. We ourselves have experienced being isolated by family and friends, fired from jobs, discriminated and insulted by people and many other violations of our human rights. That’s why we are working hard every day to change this reality in every community.

Women and men affected by leprosy are people with hopes and dreams like everyone else. Most people affected just dream of a normal life: A place to live and work peacefully, surrounded by their family and friends. They do not want to be defined by their disease.

It is fundamental to ensure that the word leprosy is always used without the burden of stigma. Some countries already took the initiative to change the name of the disease. However, while such change does not take place all over the world, public figures and authorities have the duty to be careful with the thousands of persons affected and the millions that had their lives impacted by this disease worldwide.

We therefore respectfully ask you to not use leprosy as a negative metaphor, and to instead support people in France, Europe and around the globe fighting to stop discrimination against people affected by leprosy.

We are nevertheless convinced that this form of discrimination against us was not the objective of your statement. Yet that’s the effect it has had on us. Confident in your good will, a few of us would be very happy and honored to meet you and discuss more

In the name of women, children and men affected by leprosy around the globe,

Organizations and groups of people affected by leprosy:

HANDA (China)

IDEA Nepal

PERMATA (Indonesia)

Sam Utthan Apal Bihar (India)

FELEHANSEN (Colombia)

HEAL Disability Initiative (Nigeria)

IDEA Ghana

Morhan (Brasil)

Purple Hope initiative (Nigeria)

IDEA Nigeria

ENAPAL (Ethiopia)

APAL (India)

Comunidad de Apoyo (Paraguay)

ILEP Panel of Women and Men affected by Leprosy

Global Leprosy Champions

IDEA INTERNATIONAL

 

Women and men affected by leprosy:

Evelyne Leandro

Lilibeth Nwakaego Evarestus

Rachna Kumari

Jayashree P Kunju

L H Subodha Galahitiyawa

Amar Timalsina

José Ramirez

Mathias Duck

Mohan Arikonda

Ganesh Muthusamy

Sathya Arikonda

Linda Lehman

Braj Kishor Prasad

Sanjay Kumar

Anand Raj

Lucrecia Vazquez

Mainas Ayuba

Kofi Nyarko

Paula Brandao

Suresh Dhongde

Yurani Granada Lopez

Sofia Castañeda

Isaias Dussan

Felicita Bogado

Jimoh Hammed

[1] https://www.theguardian.com/world/2018/nov/17/emmanuel-macron-ploughs-lonely-furrow-nationalism-authoritarian-regimes; https://www.nbcnews.com/news/world/macron-warns-nationalist-leprosy-threatens-europe-n931211; https://www.nytimes.com/2018/11/08/world/europe/macron-nationalism-populism-wwi-armistice.html; https://www.thelocal.fr/20181101/frances-macron-warns-europe-of-a-return-to-1930s.

« Flower power » : s’armer de roses contre la stigmatisation

Le docteur Sushil Koirala lutte en faveur des droits humains et de la paix depuis plus de 15 ans. Surnommé « The Rose Doctor », il a fondé la campagne « The Rose Movement », dont l’objectif est d’apporter la paix et le bonheur aux autres.  Un mouvement devenu révolutionnaire dans la lutte contre la stigmatisation. Nous l’avons contacté pour mieux comprendre.

Le docteur Koirala est entré en contact pour la première fois avec la communauté de personnes atteintes de la lèpre alors qu’il rejoignait un centre de prise en charge de la tuberculose et de la lèpre dirigée par une ONG népalaise locale. Au cours de ses rencontres avec les personnes atteintes, il a été exposé à leurs difficultés. Il a alors développé sa célèbre campagne « The Rose Movement ». Le principe ? S’échanger des fleurs comme symbole d’acceptation, de solidarité et de paix.

Pourquoi avoir choisi les roses ? Pour le docteur Koirala, elles représentent notre diversité, notre unité en tant qu’êtres humains. « Peu importe sa couleur, une rose reste une rose. Peu importe notre culture, notre langue, notre couleur de peau, notre appartenance ethnique ou notre religion, nous sommes des êtres humains », explique-t-il. Autre chose : les roses symbolisent pour lui aussi l’épanouissement des enfants. Il veut créer un environnement où les enfants peuvent s’épanouir pleinement, comme les roses en période de floraison. C’est comme cela qu’il compte rendre le monde meilleur.

Ce mouvement est maintenant bien plus qu’un mouvement de paix. Le docteur Koirala a commencé à distribuer des roses à ses patients. Parmi eux, des personnes affectées par la lèpre. Il voyait la stigmatisation et la discrimination les affecter, qu’elles viennent d’elles-mêmes ou des autres. Il voulait un moyen de leur montrer que la société les aimait et les acceptait.

« Pour guérir, le traitement seul ne suffisait pas. »

Le docteur Koirala a rapidement remarqué que la stigmatisation s’étendait des communautés de personnes atteintes aux structures de santé, aux hôpitaux, et aux professionnels de la santé. Et que les personnes impliquées dans la lutte contre la lèpre en subissaient aussi la stigmatisation.

Malgré l’existence de programmes de formation, pourtant bien pensés, sur la stigmatisation autour du traitement du VIH, de telles formations n’existaient pas pour la tuberculose multirésistante et la lèpre au Népal. En réponse à cela, il s’est mis à utiliser ses roses pour inspirer les autres et ouvrir le dialogue sur l’exclusion sociale liée à ces maladies. Lui et d’autres travailleurs de la santé ont donc organisé des « Rose Ceremonies ». Ces cérémonies étaient un moyen de soulever la question de la discrimination dans leurs lieux de travail et dans la société.

« Ce que nous voyons de la lèpre… N’est que la partie visible de l’iceberg. Il s’agit simplement de la stigmatisation, de la discrimination et des préjugés à l’égard de différents états de santé, incluant la santé mentale et le handicap. ». Le docteur Koirala espère que la lutte contre la stigmatisation liée à la santé sera bientôt au cœur du programme international en matière des droits humains.

« Tout comme une grande variété d’antibiotiques, j’utilise des roses pour diverses raisons, occasions et événements. L’objectif principal reste le même : promouvoir la paix, l’harmonie, le bonheur, les droits humains, la dignité humaine, la bonne santé. Nous voulons faire ressortir le meilleur des gens, réduire ou mettre fin à la stigmatisation et la discrimination.  Mais nous acceptons aussi le fait que nous sommes une seule famille humaine. »

Le docteur Koirala est actuellement le représentant d’Action Damien au Népal.

Flower Power: How roses have become a powerful weapon in the battle against stigma

Dr. Sushil Koirala ’The Rose Doctor’ has been a human rights and peace activist for over 15 years, and is the founder of the Rose Movement, a campaign to help bring peace and joy to others. We reached out to him to hear how his movement has become revolutionary in the fight against stigma as well.

Dr. Sushil Koirala first became involved with the leprosy community when he joined a TB and Leprosy Referral Centre run by a local NGO in his home country of Nepal. As he met more patients and was exposed to the difficulties they were facing, Dr. Koirala decided to expand on his famed Rose Movement by promoting the exchange of flowers as a symbol of acceptance and solidarity as well as peace.

Why roses? Dr. Koirala believes they best represent our diversity, yet our oneness, as human beings. ‘While Roses may be of different colours, a Rose is still a Rose…no matter what culture, language, colour, ethnicity, or religion we may come from or represent, we are all human’. Dr. Koirala sees roses in bloom as another symbol, for children growing to their full potential; he wishes to create an environment where they can grow to their full bloom, as he believes this is the best way in which to make the world a better place.

What once was a movement for peace soon grew into something much more. Dr. Koirala began to hand out roses to his patients, including those with leprosy. He could see the stigma and discrimination that they faced, from themselves and others; he wanted a way to show them that they were cared for and accepted in society.

‘They need to be healed; treatment alone was not enough.’

Something that Dr. Koirala soon noticed was that the stigma expanded beyond communities; into healthcare organizations, hospitals, and healthcare providers as well. He even noticed that those who were willing to help leprosy communities were associated with this stigma as well. Despite the well-thought training programs on stigma in HIV treatment, there were no such trainings on Multi-Drug-Resistant TB, or leprosy in Nepal. In response, he began to use his roses as a tool to inspire others and begin the conversation about the social exclusion associated with these diseases. In Nepal, Dr. Sushil along with other healthcare workers have organized Rose Ceremonies as a way to raise the issue of discrimination and stigma in their own workplaces and society.

‘What we see … in leprosy is only the tip of the iceberg, this is just the manifestation of a large scale of stigma, discrimination and prejudice against various diseases, including mental health, disabilities and so on’, says Dr. Koirala, who hopes that tackling health-related stigma will soon be central to the International Human Rights agenda.

‘Just like broad spectrum antibiotics, I use roses for multi-purpose at various occasions and events. The key objective is the same: promoting peace, harmony, happiness, human rights, human dignity, good health, bringing out the best in people, reducing or ending stigma and discrimination. But we are also accepting the fact that we are all one human family.’

Dr. Koirala currently serves as a country representative for Nepal for the Damien Foundation.