Statement of U Soe Win at the UN's 13th Conference of the State Parties to the Convention on the Rights of Persons with Disabilities

U Soe Win is the Chairman of the Myanmar Association of Persons Affected by Leprosy 

Mingalar Bar!

My name is Soe Win and I am 67 years old. I live in Pathein in Myanmar and I live with disabilities as a result of leprosy. I am very proud to meet with such distinguished guests and officials at this meeting. Thank you for granting me this opportunity to talk about my experiences and those of other disabled older persons in Myanmar.

There are nearly 6 million persons with disability living in Myanmar and amongst this number there are many who are above 60 years old. Our census data shows us that more than half of persons over 70 years old are persons with disability. Our data also tells us that 1 in 60 disabled persons in Myanmar are disabled because of leprosy.

I am grateful that Myanmar is a signatory of the Convention on the Rights of Persons with Disability. This means that our Government is committed to considering the education, economic, and social needs of persons with disability across all of their work. At the same time, we are fortunate to have active Disabled Persons’ Organisations who support each other and the Government in making the CRPD a reality.

However, not enough is being done to meet the needs of older persons affected by disability and leprosy. Our opportunities to contribute to or engage with our society and communities are frequently limited.

In many respects, I consider myself fortunate. I am an elected member of my local administration with an opportunity to represent my community. I also travel widely throughout the country to raise awareness of leprosy alongside The Leprosy Mission Myanmar and the Myanmar Association of Persons Affected by Leprosy. I am grateful for these opportunities and work hard to live up to the responsibilities bestowed upon me.

However, I spend much of my life navigating discrimination because of the visible disabilities that mark me as a person affected by leprosy. People apply stigma to leprosy, they see it as a curse or believe it to be highly contagious.

Hotels have refused me a room, restaurants have been ashamed to serve me, forcing me to eat quickly, hidden in the corner. When I travelled to Geneva to report to the CRPD Committee, I was forced to change seats on the plane three times because people did not want to sit next to me. There are many other older persons just like me in Myanmar; they are turned away from businesses because their disabilities mark them as being a person affected by leprosy.

Because of leprosy, because of visible disabilities, and because of age, we face intersecting discrimination. Any one of those forms of discrimination has been enough to ignore a person or show them disrespect. Any one of those things could mean a person has their rights taken from them. I am conscious that I must overcome all of this in order to prove my worth and access my rights. 

As I have said, my experience of discrimination as an older person affected by leprosy-related disability is not unique within Myanmar, nor are such attitudes unique to Myanmar. Persons affected by leprosy face this discrimination in every nation affected by leprosy.

The Government of Myanmar must do more to raise awareness of leprosy so that people are not afraid or stigmatise us. I wish to have legal protection if people reject me from their businesses. This way, persons affected by leprosy can enjoy the same rights and access as all other persons. This will be a victory for all persons affected by leprosy, but particularly for older persons affected by leprosy. Older persons are at risk of isolation and we combat this in Myanmar through elderly day care centres. However, older persons affected by leprosy often find it difficult to access these centres because of incorrect fears around leprosy. They are turned away from their community because of leprosy and leprosy-related disability. 

As well as raising awareness of leprosy, our Government should do what they can to demonstrate and publicise the contributions of older persons, and particularly older persons with disability. I want people in my country to know that we have something to offer. I want to be known for my service to my community, not because hotels refuse to give me a room.

All of what I’ve said already gives you an appreciation of the intersecting discrimination that older persons affected by leprosy-related disability can face in Myanmar. However, as well as facing discrimination, older persons are also often isolated from the social and economic hubs of our society.

In many rural communities, walking long distances to access employment is common. This means that many older persons living with disabilities are forced to stay at home; the journey would be too difficult for them to make each day. They find themselves isolated from livelihoods, from income, from community. They find themselves dependent on their families to get by.

And whilst the Government of Myanmar has taken steps in recent years that provide more welfare support to older persons, it does not go far enough. A person over 80 years old may receive $10 a month, but there are no pensions for persons in Myanmar, unless they work for the Government.

This means that a person is forced to save while they are working, or they must continue working into old age, which is not an option for many older persons with disabilities when the locations of jobs are out of reach. Too many older persons with disability are living in poverty because there is not enough support for them.

With an ageing population, the looming crisis of old age poverty is serious in Myanmar, particularly amongst those living with disabilities. Our nation, and many other developing nations across the world, must react to these changing demographics before crisis strikes.

I call on governments to set up support systems for older persons with leprosy and disabilities so that no one is forced to live in poverty because they are not able to access work.

There are many other great things that our Government could do to support older persons living with disability and leprosy, but raising awareness and providing financial support are two great places to start.

Thank you again for giving me your time.

Concluding Remarks:

Thank you, esteemed guests, for listening to my story and for taking time to hear the perspectives of older persons who are affected by leprosy and live with disabilities.

Many people who see me will see a man who is older, who is disabled, who is affected by leprosy, and they will not be interested in what I think, they will not listen to what I have to say, and they will not care how I feel. This opportunity to speak to you today demonstrates that my voice matters and that the voices of older persons with disability and leprosy across Myanmar are valuable.

I hope that my presence here today will help to change perspectives in Myanmar and across the world, so that people will not discriminate against older persons who live with leprosy-related disabilities, and so that civil authorities will hear our needs and respond to them, granting us access to our rights on an equal basis.