An Interview with Seinap Dyikanbaeva — Bishkek, Kyrgyzstan
My name is Seinap and I was born and raised in Bishkek, Kyrgyzstan.
In the Soviet Union, there was a belief that people with disabilities didn’t exist. They kept information about disability hidden, and people with disabilities were purposely isolated and confined to their homes or institutions.
When I was born in post-Soviet Kyrgyzstan, my mom was doing great things with medical and social integration. I grew up watching her help others and I saw children with disabilities as people.
When I was five years old, I said to my mom, “I see many children with disabilities and they are so isolated. There is no joy in their life…they have no access to education and services.”
There was an isolationist attitude toward the world of disability.
I said, “They are constantly neglected by others, and I want to change this!” My mother said, “If my daughter thinks about these options, why am I not doing something more about this?” She then decided to start an organization for people with disabilities.
My mom hoped to start in 1992, but parents weren’t sure about how NGOs could protect the right of children with disabilities. There’s a complex relation between the state bodies and parents who have children with disabilities.
They believed people with disabilities could not solve disability issues.
A few years later in 1995, the organization was founded and registered under The Association of Parents of Disabled Children (APDC). At this time, it was started without financial support and resources. Rehabilitation Center of “Umut — Nadejda” was the other main organization for people with disability, and they had been working for 25 years even during the Soviet period.
I studied at “Umut — Nadejda” provide great support to children with disabilities, especially children with multiple disabilities. I am very thankful to Rehabilitation Center of “Umut – Nadejda” for that time of my life. APDC aimed to take the next step — we had a big wish to improve disability issues and involve families, people, and the state to solve problems. We wanted to do many activities to empower disability voice in the Kyrgyzstan — like the national parental network “Janyryk” which we later created in 2012. There’s now a network of colleagues working on disability issues.
When we first started, it was very difficult because we did not have any information — we had no internet connection and consequently no resources. We started working with parents and supporting them through psychological consultations, even though this was limited as well.
Today there are many organizations using our experience and information to work in this field.
We also organized events, beginning with some flash mobs to raise awareness. The flash mobs went well because we were able to share a lot of information with the public.
Through these flash mobs, people with disabilities became aware of their rights, such as access to disability pensions.
We were able to share the idea that people with disabilities have the same rights as any other citizens.
Now, our organization has many different kinds of projects. For instance, we work to address the issue of migration — from one city to another city, one region to another region in Kyrgyzstan.
The problem with migration is that people don’t have the same access to educational or medical services when they move. Bishkek is our capital city and the health of migrants is a very big issue here.
In August, we did a very big conference about this issue, and we were the first organization to present on issues of migration and disability. We also work on issues of early child development and disabilities.
And now we are working with Article 25. This movement’s goals coincide with our own. We want equal health for all, which includes those with disabilities.
Since our organization started in 1995, the idea that people with disabilities are sick and unable to do much has been hard to change.
People with disabilities are always associated with charity.
But we’ve managed to change this perception in recent years.
Journalists used to only ask us about our problems, but now they ask us about the organization’s successes and the success of individuals within the organization.
It’s been a big success. We have worked very hard to create a positive image of disabilities and we are now seeing real change.
I am now 29 and I graduated in 2012 with a Bachelor’s Degree in Law. Everybody was very nice to me when I was young because they saw I had limited mobility — I can’t move by myself because I have cerebral palsy. But I still felt very abandoned and unhappy.
I never saw another person with a disability in public places when I was a child. I spent a lot of time alone. There was a huge lack of accessibility in the public places. Now the situation is better, but when I was a child, I only ever saw other children with disabilities when I went to the Rehabilitation Center of “Umut – Nadejda”
Today, I see people with disabilities openly and it’s not just because of our organization’s success, but of everyday people who are trying to do something about this issue.
Being the first organization really working on these issues, how would you describe this change in stigma towards people with disabilities?
I believe that the situation is improving. Now everyone says that we all have the same rights. For instance, we had a project on inclusive education where we went to different schools and talked to children. We asked them what their thoughts on people with disabilities were. In the earlier years, we usually had negative responses, but now the children were saying that they wanted to help and support people with disabilities.
The children all said that they thought that their peers with disabilities had the same rights. The children also talked about wanting to have friendships with their peers that had disabilities and that they wanted to know more about the issue itself.
This alone shows me that there have been very big changes in our society.
Inclusive education is accessible education.
Now, when people talk about children with disabilities, it is much more positive. People are more open to supporting our programs as well.
For example, ten years ago truly understanding Down Syndrome seemed nearly impossible. The general public believed that children with Down Syndrome could not be educated. Now, the general public knows that is not the case.
We have a program called the Daily Center, which is a special program designed to help children with Down Syndrome and we have seen huge improvements because of it. For example, we had a ten year old who wasn’t performing well in school and after attending the program he was getting along with classmates, listening to teachers, and became less aversive.
Amidst the problems of economic hardship and political strife in Kyrgyzstan, what is the space for disability activism today?
Our political and economic situation is not perfect. In 2005 and 2010 there were revolutions in the nation and we had to look for outside funding. It’s a very bad situation for people in our country, especially for elderly people, children, and women. But now I see economic growth and social investment. We don’t sit and wait for just government funding — we look in different directions.
Many people are now even starting their own projects. Our organization itself has grown — we used to be based solely in the capital, but now we are focused all over the region and have many international leaders supporting our work.
What are some of the most difficult moments that you faced?
Getting an education was hard. As a child with a disability myself, trying to go to an ordinary school was almost impossible. Along with having a disability, I was older than my classmates. Normally you start at seven and I started at ten, so they wanted to put me in a different program. They said I could only get home education, which was insufficient because my level was much higher than what the teacher was teaching me.
My teacher told me that she would testify for me to get higher education so I could go to high school. I was finally able to get into ordinary school and the first month was very difficult for me, but because my teacher and classmates were so supportive, I was able to catch up quickly.
I faced similar issues within my organization as well. It was very hard to prove that a child with a disability, like cerebral palsy, was ready to go to school. Now it is easier than before — more children are able to get a good education.
What would you say are your most beautiful moments?
I am inspired by people’s success stories. I like being able to talk about more than just the problem — I like talking about the ways to solve the problem.
And when I listen to my friend’s stories about how they got married, especially girls because it is much harder for them to create families, it makes me really happy.
I am also inspired by the success of people’s professional lives — I listen to these stories and then share them with everybody back home! One of the most incredibly inspiring people is Kalle Konkolla, leader of the Abilis Foundation and Kunnus organization in Finland. He was the first person who saw my leadership skills and he is the director of a documentary titled “Seinap’s Songs.”
I am also inspired by the wonderful Susan Sygall and the team of Mobility International USA (MIUSA). After my participation in the Women’s Institute on Leadership and Disability (WILD) in 2003, I started to do work in the global disability field. Susan gave me and all of the WILD Women around the world a marvelous example of leadership and a professional, personal attitude. She is an inspiring person who knows how to protect women’s rights and human rights globally!
Honestly, in my life I have met so many wonderful people with disabilities and unfortunately I can mention only a few of them because the list is too long… Masako Okihura, Shuaib Chalklen and other wonderful people from all over the world. If I did not mention my dear friends, colleagues, I mean no offense. My heart and memory respect and remember each and every one of you.
I am also inspired by God — I am a Christian. The Lord Jesus makes me very happy.
If you could sit down with President Atambayev, what would you tell him?
If I had the chance to meet with the President, I would tell him that our country is very beautiful, but we need a good national strategy that will honor national laws and human rights.
As of now, our President hasn’t tried to do anything to better the situation in regards to people with disabilities. I understand that we have had two revolutions and this is not easy, but we need to start somewhere. If you compare our lives to ten years ago, it is much better.
There is less stigma and more accessible services, but we need more. We need the government to take action and make a plan to fight for our cause.
To learn more about Seinap and APDC click here
To learn more about Article 25, click here