Winds of Change and a Voice

A couple weeks ago at church, a friend introduced us to her friend, who then met Vladik, and this story began.

The friend we met, Vera, is a local activist here in Zhytomyr.  She is involved in some local politics and has a passion for children and adults with special needs. She is particularly passionate about developing inclusive education in our city.

“Inclusive education is based on the simple idea that every child and family is valued equally and deserves the same opportunities and experiences. Inclusive education is about children with disabilities – whether the disability is mild or severe, hidden or obvious – participating in everyday activities, just like they would if their disability were not present. It’s about building friendships, membership and having opportunities just like everyone else…Inclusion is about providing the help children need to learn and participate in meaningful ways.” source

Inclusive education, as a general practice, does not exist in our city, nor throughout the rest of Ukraine. There are places where inclusion is more possible than others, and of course I can’t speak to the whole country or to every school, but in general it is not practiced. Here in Zhytomyr, at this point in time, inclusive education is only available to very few children with disabilities, and generally it is only available to children who’s parents have fought, and continue to fight, a very hard fight to make it possible.

At a press conference about inclusive education

The schools and school system in our city are simply not set up at all for children who need extra help.  We have learned that just from having our own non-native-speaker children in school here! Our kids’ “special need” was that they lacked language, and the schools just were not sure at all what to do with them because they didn’t fit the mold.  It is not the fault of the teachers, or even the schools themselves, it is the fault of a social system that has spent decades hiding those who are different. If children with special needs do not exist in society, then there is no need for society to adapt for them. For many years it was the practice to institutionalize people with disabilities, but that is slowly changing.  More and more Ukrainian families are choosing to keep and raise their children. As more children with special needs are living at home, the need for education and inclusion for them is becoming more and more apparent.

This is not an issue isolated to Ukraine. All developing countries must face this issue at some point. In the US we have come a long way, but we really didn’t start addressing the issue of inclusive education until a few decades ago. So this is not me pointing a finger at Ukraine- as if the Ukrainian people are alone in this injustice; this is me knee-deep in the fight for my son, here in Ukraine.

Now, back to the story. 🙂 Vera, our new friend, had heard about Vladik, about where he came from, and about the fact that he attends school. She was fascinated by it and asked if we would be willing to speak to the local news about our quest for education for Vladik. We agreed to meet, a bit leary in the beginning, but open to a discussion. We want to be very careful with how we expose Vladik to the news. His story is painful and tender and deserves to be shared in its entirety. Vladik is too precious and he has fought too hard to be reduced to a sound bite that induces guilt or pity. In my opinion, he deserves a standing ovation!

We met with Vera and agreed to share Vladik’s education story, but we wanted to make sure the focus was about how he is thriving, and not only about where he came from. She agreed, and two days later our boy was cheesin’ it up for a camera crew, charming them all with his awesomeness.

We thought he would be nervous, but boy were we wrong! He absolutely loved the camera! He proudly showed how he gets ready for school, how he knows which bus to take and where to walk. Most of all, in my very biased opinion, he showed that he is a wonderful boy who is valuable and smart and deserving of an education, just like every other child. Here is the video:

When we decided to adopt Vladik, we felt like the Lord was telling us that Vladik would be a voice for those who have no voice. At that time we thought maybe that meant that someday Vladik would become a speaker who would share his story with others, many years down the road. And maybe that is still going to be true someday, but, wow have we been surprised how God has decided to use Vladik as a voice already!  Here in his own country! Vladik is not necessarily a voice with his words and speech, but with his life, with his joy, with his courage. He is showing his own people what is possible. He is showing how someone who was locked away for all of his childhood is still capable of learning, growing, and changing, if only given the chance. He is a voice of hope for all of the children left behind.

The follow-up to the short news story about Vladik was a live interview on a local evening TV show. Gosh, I wish I had realized it was going to be live before we got there. That was a bit of a shock! Ha! Anyway, we survived. 😉 In the first half of the show Vera interviewed Jed and me, along with one of the teachers from the kids’ school. We got the opportunity to share why it’s important to us that Vladik go to school. In that, we were able to naturally share his value and his worth as a human. It’s important for Vladik to go to school because he is a child and he wants to learn! He wants to be with other children and have experiences and gain independence and learn new things. He was robbed of so much in his life and we, as his parents, are obligated to help him grow to his fullest potential- however that may look like. It is our privilege to fight for him and the ones who will come behind him.

The second half of the show was what rocked my world. Vera interviewed a foster mom (our friend who fosters sweet “Baby A”) and three local mothers of children with special needs. Those moms shared their experiences with fighting for inclusion in schools, and they said so many things that needed to be said- by Ukrainians, not by us foreigners.   They spoke about the first need being an inclusive society. Inclusive education is not possible without an inclusive society. They spoke about the value of their children and their desires for them being the same as every parent’s desire for their children. We were cheering them on (literally clapping and bouncing up and down in our seats) from the green room.

Many parents of children with special needs in our city, and throughout this country keep their children at home almost all the time. They are afraid to take them out because society as a whole does not accept them. Whether that means inaccessible public transportation and buildings, or just basically unaccepting people, the results are the same. It’s easier and less painful to just stay home. We have experienced this feeling many, many days here in Zhytomyr. Sometimes I get a horrible sinking feeling in my gut when I know we are about to go somewhere with Vladik. I know the stares and the finger-pointing and the mocking will come. I know that all my kids, including Vladik, will hear it. I will wonder at his understanding and my heart will break for him. I know I will need to steer clear of groups of kids because that is when the staring is the worst. I know the cruel comments will come and I will wonder how to respond. It has become our reality- and yes, some days it seems like it would be better to just stay home. Vladik is loved at home. He is safe and understood.

BUT change will not come without exposure. People can not learn if they are not given the opportunity. Vladik, with his sparkling personality and loving, cheerful nature is the perfect person to teach others. To know him is to love him. If we keep him at home, hidden away, we are contributing to the problem, not being agents of change, as God has called us to be. Vladik loves to go out! He loves adventure and going on buses and seeing new things, meeting new people. If he is brave enough to face an intolerant world every single day- and do it with joy, then we can do it too.

Our boy is a voice. In his own, unassuming way, he is standing up for all the families and children hiding in the shadows. As one of the local moms in the interview said in encouragement to families watching “Come out! Come out! Don’t hide anymore.”

The winds of change are coming. May God open and change hearts and may He receive all the glory.