Published in Mizzima Weekly on 11 June 2015
Nay Lin Soe is the founder and programme director of the Myanmar Independent Living Initiative (MILI), which is a local NGO that aims to build an inclusive society and enables persons with disabilities to live independently and achieve their potential. Nay Lin Soe talks to Mizzima Weekly’s Jessica Mudditt about why disability-related issues need to become part of the mainstream public discourse.
You founded MILI in May 2011. What were your reasons for doing so?
Most organisations in Myanmar focus on a single disability, such as blindness. I wanted to create an organisation that works for people with any type of disability and introduce the concept of independent living. I believe that people with disabilities can live independently and participate fully in society with the appropriate support. Another reason was that most disability NGOs only operate in Yangon, whereas I wanted to work across the whole country because I know that those who live outside cities have no opportunities or support. Our head office is in Yangon and we have 20 local branches in eight regions and states.
What are MILI’s objectives?
We have two objectives: the first is to empower and support people with disabilities. Our second objective is to promote the rights and inclusion of people with disabilities. This includes working with government officials, NGOs, religious organisations, media and business personnel – we aim to make disability a cross-cutting issue.
How would you describe the general perception of people with disabilities in Myanmar?
Most people view us as a charity case. We are objects not subjects and they think we are incapable of doing anything. So awareness is a large part of what we do. We are introducing the concept that it is not disabled people who need to change, but society. The way we try to counter negative stereotypes is by holding regular workshops on disability. The workshops introduce disability as a cross-cutting issue – it should be part of the mainstream agenda. We also produce weekly educational radio programmes which are broadcast on several stations, such as Cherry FM and Mandalay FM. We have a studio on our first floor and the programmes are created by blind people using tailored software.
As a person with a disability, have you experienced discrimination?
Yes I have, from an early age. When I was five, my mother sent me to the local public school but the principal wouldn’t allow me to enroll. Her reasoning was that the school had a limited number of teachers – there was one teacher to around 55 or 60 children in a classroom. The principal said that if a disabled person such as me was a class member, the teacher wouldn’t have time to concentrate on the other students. My mother tried to explain that I could do everything independently – I could read, write and manage daily habits such as going to the toilet. But the principal didn’t believe us. Teachers in Myanmar tend to have limited knowledge about disability and they don’t know how or what to teach them. The principal also said that even if I did go on to get a university degree, I wouldn’t be given a job because I am disabled. She said it was better for me to stay inside, that I should be home schooled by my grandma because that should be enough for me. So that was that.
Two years later, my mother took me to a new school that had been built close to our home. She negotiated with the principal and I was finally given the chance to start attending school at the age of seven. Normally children begin at five. This is my story, but every disabled person in Myanmar has a story like this.
I would like to say that disabled people are part of the community and part of this country. It’s not just the government that needs to help us make disability issues mainstream issues, but private businesses and civil society. It’s about supporting equality.
Did you pursue higher studies?
I completed high school with three distinctions and wanted to study at the University of Industry because I wanted to be a mechanic. But because of my disability, I couldn’t attend university every day because it was so far away from my home – it was around 80 kilometres. So I went for a distance education degree with a major in geography. I couldn’t choose mechanics as a major because the choice of majors is so limited. After my first year, I went to hospital to have surgery to correct my lower limbs and spent the next two years in rehabilitation programmes. When that was complete, I began working for a small organization and then left for Japan in 2005, where I spent the next year.
What was Japan like?
Japan is a top country in terms of accessibility. I could go anywhere in a city – even the subway. When I came back to Myanmar in 2006 I joined a local NGO which was involved in community based rehabilitation. I worked there for five years as a rehabilitation project manager, before joining a Japanese organisation. I resigned three years later and set up MILI.
How many staff does MILI have and what are the benefits of membership?
MILI currently has 41 paid staff, most of whom have a disability. We hope to prove that people with disabilities aren’t a burden on society but are in fact contributors – not just in management but in all areas of implementing the projects MILI runs.
We also have more than 2,000 members. The basic criteria for membership is having any type of disability. Membership is completely free and it allows members to participate in group activities which aim to build an inclusive society or to help them live independently.
How has MILI grown over the years?
In the beginning we had no budget, no office, no facilities; nothing. We began with disability inclusion training programmes, which we provided for several international and local organizations in Yangon. The money we earned from training fees made it possible to buy computers and then set up an office. But in the beginning it was very hard. We approached organizations to support us, but they didn’t believe in us because we are disabled. Over time they started to see what we were capable and increased their support.
Today our major partners include Japan’s Nippon Foundation, which provides 65 percent of our funding, along with the Myanmar Education Consortium, the International Foundation for Electoral Systems from the United States, as well as a donor from Indonesia. Our donors support different projects: for example, for ActionAid we produce disability related literature.
Although we now have many partners, we have also set up a business programme because we don’t want to rely exclusively on donors: we need our own income. MILI has a printing business and a car rental service – this was made possible when the Nippon Foundation donated six cars.
Are you also lobbying for legal reform?
MILI has been working with members of parliament since 2012 on a new National Disability Rights Law. It’s already been passed by the upper house but the process of actually bringing it into force is taking a long time – but we do hope it will be passed in 2015. The new law would require all public buildings to be accessible for people with disabilities, as well as transport systems.
So few buildings are accessible – even footpaths are not accessible. If this comes into law, there would be so many buildings that could be found to contravene the law. What is the penalty?
The penalties aren’t so big – they include fines while others are one or two months in prison. Another part of it is punishing businesses who fail to adhere to a new quota for disabled members of staff, which will be set at one percent. But yes, we’ll have to watch to see whether the change is real or not. Once the law comes into effect, it will be handed over to the Ministry of Social Welfare for implementation.
We are also lobbying for rights for the disabled to be included in the new education law and the election law. We hope to increase access for voters and we are working with USAID and the Foundation for Electoral Systems on this, as well as the Union Election Commission (UEC). We present the UEC with recommendations from community groups that we meet with. The UEC has the power to create by-laws and we hope that these views can be incorporated – such a proposed by-law to make police stations accessible.
For more information, visit Myanmar Independent Living Initiative’s Facebook page: www.facebook.com/myanmarili2015