Side Event on Leprosy and Disability~Voices of People Affected by Leprosy~ United Nations 8th Conference of States Parties to the Convention on the Rights of People with Disabilities

New York, USA

Today, I am very grateful that we are able to hold the very first event that combines disability and leprosy.

I hope we can all take the time to explore the possibilities of how people with disabilities and people affected by leprosy may collaborate to strengthen the collective voices of both communities.

I met Mr. Javed Abidi, the Global Chair of DPI three years ago. The Nippon Foundation organized a symposium in India on leprosy and human rights and Mr. Abidi was a participant.

As you saw in the video earlier, leprosy has been one of the most misunderstood and stigmatizing diseases known to humankind. At present time, effective treatment is available. But if left untreated, symptoms can progress and lead to deformities and permanent disability on the hands, feet, eyes and face. Due to its disfiguring effects, leprosy was long feared and stigmatized as a curse or punishment from God.

Among those affected by leprosy, there are people who are unable to participate in mainstream society due to severe disability. Many of them cannot get sufficient education. Many others have difficulty finding employment and are forced to resort to begging as a livelihood.

In my capacity as WHO’s Goodwill Ambassador for Leprosy Elimination, and the Japanese Government Goodwill Ambassador for the Human Rights of People Affected by Leprosy, I have been working to end the stigma and discrimination against leprosy and to improve the quality of life of people affected by leprosy.

The conference in India was the first conference on leprosy that Mr. Abidi had attended. At the conference, Mr. Abidi said to me with strong eyes of determination, “regardless of the differences in how we became disabled, we are all a part of the disability group. There must be something that we can do together.” With this, he offered a proposal to explore how we may strengthen ties between people affected by leprosy and people with disabilities.

Mr. Abidi’s offer was very encouraging and it reconfirmed my thoughts that although circumstances we face are different, our goals and visions are very close.

The disability community and the leprosy affected community are both aiming to achieve an inclusive society. And over the years, we have made successful milestones toward that end.

Around the world, the two groups have been advocating for greater say in government policies, as well as reaching out to communities to help improve quality of life.
In terms of our global fight for human rights, people with disabilities won the UN Convention on the Rights of People with Disabilities in year 2006 and the people affected by leprosy won the Resolution to End Discrimination Against People Affected by Leprosy in year 2010.

Since then, we have been seeing gradual improvements such as policy reforms however, when seeing the living conditions of these concerned groups around the world, I think you will all agree that there is still a long road ahead of us until we see a truly inclusive society.

Last year, The Nippon Foundation and DPI started a new project to explore ways to strengthen collaboration between people with disabilities and people affected by leprosy.

Details of these developments will be shared later on, but to give you an example, in the case of India, Mr. Abidi and Dr. Gopal who is the co-founder of the Association of People Affected by Leprosy or APAL are looking into possibilities of collaboration. In the case of Ethiopia, there is already a strong relationship established between the disability group and the group representing people affected by leprosy.

On the other hand, there are many countries where no such organizations currently exist. In these countries, possibilities should be explored on how to get these organizations up and running.

As you can see, circumstances vary in countries and regions. That is why I believe it is best to tailor each case accordingly. Through these efforts, if people with disabilities and people who became disabled from leprosy can come together, cries for human rights can be amplified.

I truly hope that this event will offer new opportunities for people with disabilities and people affected by leprosy to form cooperative relationships and new possibilities where together we may shorten the long road ahead to realizing an inclusive society.

Lastly, I would like to convey my appreciation to the United Nations Secretariat, UNDESA, the representatives of the governments of Ethiopia, Japan and the Philippines for your support, Mr. Abidi and all the people at DPI for providing us with this opportunity, my dear friends Mr. Ramirez and Dr. Gopal for your tremendous input in this event, and all of you in the audience for taking the time out of your busy schedules to attend this event.

Thank you.