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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

GLOBAL APPEAL 2016: Nothing About Us, Without Us

Panelists offer perspectives on discrimination and empowerment.


Viewing a common problem from different standpoints, six panelists discussed the challenges facing those with leprosy and other diseases, disabling conditions and health impairments in “Health and Human Rights — Combating Discrimination,” one of the sessions at this year’s Global Appeal event. (Comments have been summarized.)

 

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Klaus Lachwitz is president of Inclusion International, a global organization representing persons with intellectual disabilities and their families. A lawyer by profession, he described his role as a member of the drafting group for the Convention on the Rights of Persons with Disabilities.

Our official representative at the United Nations was Robert Martin, a person with intellectual disabilities from New Zealand, and I was his legal assistant. He is a so-called self-advocate, which means he wants to speak up himself. He brought the practical examples of discrimination and I tried to transfer that into legal terms. That was a really good thing to do and I think it was very progressive. We have to listen to these people, and we have to serve them.

One of Martin’s key calls in New York was to abolish guardianship laws. Guardianship laws mean that someone else has the right to speak for, take decisions about and exercise control over another person, which is totally against human rights. Human rights mean you have personal dignity, autonomy and the right to speak out.

The convention was not written and negotiated by scientists and diplomats — it was drafted in partnership with disabled people. The main message was: ‘Nothing about us, without us. We are the experts; we know how life is and what our problems in daily life are.’

Intellectual disability is not a disease; it’s an impairment. The impairment itself is not the problem; the problems are the barriers these people meet.

 

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Ikponwosa Ero is the U.N. Human Rights Council’s first ever independent expert on the enjoyment of human rights by persons with albinism.

Albinism is a genetically inherited condition that results in a lack of pigmentation or color in the hair, skin and eyes. Nowadays we prefer the term “person with albinism” to albino, because albino equates the person with the condition, and I’m sure you can appreciate the problem with that.

The frequency of albinism varies by region. In North America and Europe, 1 in 17,000 have the condition; in Africa, it is usually as high as 1 in 1,000. In some aboriginal groups in the South Pacific and South America, levels reach 1 in 70.

In 25 countries we know of, people with albinism are being attacked with knives and machetes for their body parts. There is a belief based in witchcraft that these body parts can bring wealth and good luck when used in potions. As a result, there have been hundreds of attacks, and they are still going on.

Health issues that people with albinism face include low vision, high sensitivity to bright light and skin cancer; skin cancer is the number one killer of people with albinism today.

Stigma is another problem. In Hollywood films, a person with albinism is often depicted as crazy. There is also a problem with name-calling. Devil, freak, ghost, monkey, or ape are actual dictionary names of people with albinism when you translate them from the local language into English. Discrimination can be overwhelming, but I’m finding that leprosy holds lots of lessons for albinism.

 

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Ramvarai Sah is a trustee of India’s Association of People Affected by Leprosy, or APAL.

India achieved the goal of eliminating leprosy as a public health problem in 2005, but changing the mindset of the community toward the disease and clearing up the misconceptions is still a big challenge before all of us. I have a family and my two sons have been educated, but I have undergone the experience of stigma and discrimination and lived an isolated life when I was young.

APAL was formed in 2011 for the socio-economic empowerment of persons affected by leprosy. Discriminatory laws still exist that deny our rights. Old people still have to beg. Civic amenities are not provided to leprosy colonies in the proper way. APAL’s representatives should be involved in the community and we need to contribute to shaping government programs.

 

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Yasuji Hirasawa is on the steering committee of Japan’s National Hansen’s Disease Museum. Diagnosed with leprosy at 14, he has lived in a sanatorium for 74 years.

We became involved in the movement for human rights of all people with disabilities, including leprosy. We learned that by getting together we would be able to achieve things beyond our imagination. But our disease had certain characteristics — the deformity was visible — and we faced many difficulties.

We decided not to get angry but to forgive those who discriminated against us. In my area, I got involved in city planning. Some local people were against the idea of having leprosy-affected persons involved. But since the 1950s we have worked together to think about what we should do.

We deny fundamental human rights when we don’t do things with people, but for people.

We decided to create a forest. We planted trees one by one as a token of gratitude to local people who accepted us. We hope that this human rights forest will be passed on to posterity.

To take things forward in leprosy, we need to trust each other, because in the past patients were isolated in leprosaria. But those days are over and should never be repeated. It’s a negative legacy of humanity but one we have to learn from and turn these experiences into positive ones.

 

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Steven J. Kraus is director of the Regional Support Team for Asia and the Pacific of UNAIDS.

One of the things we use a lot in HIV/AIDS is the principle called GIPA — greater involvement of people living with HIV/AIDS — which is this concept of nothing for us, without us. If I am honest, I think those of us in the U.N. probably have to keep relearning that lesson many times.

All of us have a vested interest in working with the communities. When we don’t do that, we do silly things — preventing people from having a healthy and satisfying sex life, from having their own families. We deny some of the most fundamental rights when we don’t do things with people, we do things for people.

A lot of the stigma experienced by people living with HIV/AIDS is self-stigma and often it’s because of what society puts on them. Individuals feel they are less than perfect, not worthy, that somehow something is wrong with them, when in fact all they are doing is living with a bacteria, with a virus, or with a genetic condition.

It is very important to affirm the love and goodness in the person. That empowers them to address stigma and discrimination, and prevention and treatment.

There need to be partnerships between governments, civil society and people living with the disease — and they have to be genuine partnerships, not token ones. As we move forward, we must do so in partnership with each other.

 

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Akiko Fukuda is secretary general of the World Federation of the Deafblind. A deafblind person, Fukuda also has multiple sclerosis and uses a wheelchair.

Deafblindness is a physical condition and not the name of an illness. We are like a rare species of missing in the world. Maybe you know of Helen Keller. She was one of the most famous deafblind individuals, but not all of us are Helen Kellers.

The needs of the deafblind are different from those with other types of disability, yet Japan has no category for deafblindness in welfare-related legislation. We are very isolated and I would say we are kind of excluded.

There are many people who are deafblind but because we have difficulty in communicating, getting around, and also in getting information, it is very hard to connect with each other, even among ourselves. That’s why I say we are missing people; I actually am missing from the stage.*

To overcome stigma, maybe what we need is a “medicine”. Together I think we can create a new medicine. It could be learning; it could be sharing; it could be an international convention or legal instrument; it could be anything that we work on together.

We should work together and support each other together to move one step forward, or one step higher, to live a life that matters

Photos: leprosy.jp

FOOTNOTE

* Lack of wheelchair access prevented Ms. Fukuda from joining her fellow panelists on the dais.