Educating Children with Disabilities in Hungary

Having spent over a week now in Hungary discussing the education of children with disabilities, I wanted to put together a few thoughts for interested persons.

As we in the US know, the evolution of inclusive education in public schools has been a very long path. Families live with the immediate problem of developing the skills and inclusion of the child. They also live with the reality of schools that know how to develop a plan, but that often still find ways to be exclusive of the child. There are therapists, school liaisons, psychologists and more. Suburban schools do better in this area than urban or rural schools, but there is at least some sort of functioning network that places kids in inclusive settings where possible, and provides some options when not.

In Hungary, the education of children with disabilities is concerned with a lot of the same basic needs, but the system is incredibly under-resourced. There are literally no real programs for the inclusion of kids with disabilities in mainstream schools. Anett and her group are working on some pilot projects, but part of the legacy of the Hungarian Communist era is an emphasis on standardization for everything, including in the classroom. This gives very little flexibility for inclusion.

Essentially, if you are a kid with a disability in Hungary, either you can handle the regular curriculum, or you are sent to a "special school." If you are a rural kid with a disability, either you get sent away to board at the "special school" (usually in Budapest) or you just stay home and get no education/training. The curriculum at the "special school" does not match that in the regular school for content or maturity level.

There are about ten "special schools" in Budapest, each focusing on a different area of disability need. One school is for kids with autism. Another is for kids who are Deaf or hard of hearing. Yet another is for kids with intellectual disabilities. This morning, Anett took me to visit the school for kids with multiple disabilities who are nonverbal. This is the only school of its kind in Hungary.

An office/therapy room

About twelve children attend this school, and they range in age from 6 to 16. All have severe (and multiple) disabilities and all are nonverbal. The primary goal of this school is therapy that provides ways to communicate, whether that is through pictures, colors, music or other ways. The curriculum is not at all a standard curriculum that includes, for example, math. The main goal of the school is simply to foster the children in learning to communicate.

The school is run by the Bliss Foundation. There is some state funding for program costs like staff salary, but the foundation must raise funds for items like adaptive equipment and therapy items. Referrals to the school are made by specialists.  Parent involvement is often high, but it depends on the family. The director, Paul, and a staffer named Noemi gave me the grand tour of the school.  At the point where I visited, all the students were in music therapy, several accompanied by one-on-one aides.

Anett pointed out that the staff work very hard, the facility is nice, and the staff are committed to supporting the students, but resources and time are limited. Since the school is separate from regular students, I sensed that it would be a huge shift to get people to think in terms of inclusion...when you educate children separately like this, expectations can fall. Paul and Noemi did say there are events where non-disabled kids visit the school or interact with the students, but my personal instincts were that as long as these children are kept apart from their peers, it will be very difficult for them to build relationships towards real adult inclusion.

These issues are why Anett is making the effort to school her son Eric at the new therapy school, Csodacsigahaz.  Eric is ten, has severe CP, and is nonverbal, but he can read and recently he tried out a new communication system that relies on tracking his eyes. He also engages with all the people around him and is clearly a lively kid with lots of potential. Because Anett has a vision for inclusion, her expectations for Eric are high, and the hard work she and Zoli have done to support him really shows.

In the end, inclusion is not just about hard work, but also about an attitude of high expectations. A boy who is ten and has a disability is not a baby or a thing. He is a ten year old boy who is a person, who can grow and learn.  The question of course for all children with disabilities in Hungary is whether they will be able to access the gift of high expectations and inclusion, or continue to be segregated and shut away.

Sunday with the Grandparents in Siófok, Hungary

On Sunday, Anett invited Kristen and I to join in a family trip to Siófok, where her parents-in-law live. Siófok is a town on the banks of Lake Balaton, the largest freshwater lake in Europe. For many years, especially in the 1980s and 1990s, it has been a summer resort town.

In Europe, family vans are much smaller than in the US, and Anett's van is a burgundy Citroen Picasso. Anett's husband Zoli (short for Zoltán) drove with Kristen up front. I sat with Zoe and Eric in the middle, and Anett sat in the back. Zoe is Anett's adult daughter who attends university, and who has been acting as our English translator at several events. Eric is ten years old and has CP---he doesn't talk but he clearly listens and engages with everyone. With Zoe at the center of the car translating, and Kristen side-interpreting to me, we zoomed out of central Budapest to the southwest and soon passed the Buda hills on the highway through farmland.

Anett and Zoli are both very smart, interesting people who I think embody the phrase "inquiring minds." They are also very tenacious, which has been especially important in their lives as parents of a boy with a disability. We discussed next steps for Anett's parent association, and possibilities for further coalition building. Zoli works in finance, and had good insights and questions about the economy and quality of living in Hungary and the US.

Since it is February and Siófok is in the off season, some roads were closed, so Zoli had to figure out how to drive us to the lakefront to see the water. He grew up in this area of Hungary, while Anett grew up in Gyula. Zoli guided us to a park on the lake, where we could look out on the vista. It was a gray day with fog on the horizon obscuring the distant hills on the other side of the lake, but it was still a wonderful sight, and particularly peaceful to hear the waves lapping at the shore.

A panoramic shot of Lake Balaton at the Siofok jetty

After another stop at the port area of Siófok where we walked out on a jetty and saw swans and gulls being fed, we drove to Zoli's parents' home.  His father Zoltán and mother Erzsébet (Elizabeth) greeted us at the doorstep of their burnt-orange painted traditional home, which is over 100 years old. They greeted us all warmly but especially showered affection on Eric, with whom they speak every night on the phone. It had been about two months since they had last all seen each other in person.

We gathered in the dining room, which was heated by a traditional style ceramic fireplace in green.

The ceramic fireplace with dark green tile. Very hot!

The table was laid out for guests with flowers. To the side of the room, Elizabeth had decorated a small tree with Easter eggs in different colors. Through a door, I could see a den with reclining chairs and books; later in the conversation I learned that Elizabeth is a voracious reader and follows global news.

After seating logistics (where to seat me, where to seat Kristen, where to seat Eric so Anett and Zoli could help him eat, etc) and a glass of Hungarian rosé wine, we began lunch, which started with a soup of beef and vegetables in beef broth. We spooned this on top of very thin noodles. We followed this with hand eating of roast beef and mustard, and also bread with bone marrow on it, which Zoli's father spread on bread and gave to us. Marrow is very common in Hungary and Eric loves it.

Elizabeth then brought the main dishes to the table. Stewed cherries and crumple for Eric, and roasted vegetables, beef, and potato dumplings for the adults. A salad of cucumber and sour cream was served on the side. Dessert was a dish called golden galuzka, sweet baked rolls with a sweet and slightly lemon sauce on top.  I know I have many friends curious about food, so here are a few photos.

Hungarian rose wine

The beef soup, with the wine and tubes of mustard. Yes, that is a toy figure of a German man drinking beer. Long story.

Stewed cherries with crumble to the left, and roast vegetables.

My plate. Potato dumplings, braised beef, roast vegetables, and cucumber salad.

Golden galuzka

After lunch, we spent time talking while Zoli did adjustments on Eric's chair. Elizabeth was very curious about the US presidential elections, and Zoli asked about my take on the events in Syria.  Zoe and Zoltan showed us through the family photos on the wall next to the fireplace. The family noted that when they visit, often the big activity is the men work on the cars, while Eric hangs out in his walker outside and spends hours watching the guys fix engines. The house is a peaceful one, though as with any family in Eastern Europe, history hangs heavy in the background.

Eventually we wrapped things up to go. Elizabeth gave Kristen and I each a crocheted Easter egg as a gift. After many farewell kisses for Eric, Zoli backed out of the driveway to head back to Budapest, and we all waved to each other until we were out of sight.

As we drove away, I noted to Anett that both Zoltan and Elizabeth were very loving and supportive of Eric, and I wondered whether this was common with other grandparents. She said it depended---many are very loving but also there are some who do not know what to do with their disabled grandchildren. They don't know how to interact, so they pull back. I am very happy for Anett and Zoli that this is not the case with Zoltan and Elizabeth---I could not see how you could have nicer grandparents for a nonverbal kid with a disability. Life, for kids with disabilities, for all kids really, is far more than a teaching methodology offered by a school---real inclusion matters, in school and out.

Of Haves and Have-Nots

The story of those who have a lot and those who have nothing is a very old story. Somehow, through the ages, people continue to invest a lot of creativity in expanding opportunities for those who have a lot, and denying opportunities for those who have nothing.

Map of Eastern Europe, downloaded from the University of Texas

The World Bank reported that the total national Gross Domestic Product (GDP) of Hungary in 2014 as $138.35 billion US dollars, with a total population of 9.9 million in 2013. Bulgaria's 2014 total GDP was reported as $56.71 billion in US dollars, with a total population of 7.3 million. And the United States total GDP was reported as $17,419 billion in US dollars, with a total population of 318.9 million. As a note of interest, the population of Illinois is 12.9 million, with 9.7 million living in the Chicago region and 2.7 million living in Chicago proper. 

So now that we know the total GDP for each country, the question is: in looking at government debt, what is government debt as a percentage of the total GDP? Interesting answer. For Hungary in 2015, national debt amounted to about 76% of the total GDP amount. For Bulgaria in 2015, national debt amounted to about 26% of the total GDP amount. And for the United States? Our national debt is 103% of the total GDP. (Source: Trading Economics)

So what this means is that even though Bulgaria is the poorest of the three, it actually carries less debt relative to the overall economy than Hungary. Hungary has high debt relative to the overall economy, which raises big questions about how the Hungarian economy is managed. And the US basically has more debt than the overall income of the US economy, which raises massive questions about how the second largest national economy in the world got that way.

Naturally, when the economy is poorly managed, terrible things happen. Like the college students in the US who carry tens of thousands of dollars in student loan debt. Or the Hungarian pensioners who get into debt and lose their homes because they cannot pay off the interest. Or the nonexistent school options in rural Eastern Europe for children with disabilities that force parents to send their children to institutions or "boarding schools," not to mention the general lack of rural economic development.

Who is to blame? Naturally if you ask those who have money or power, it is the fault of the have-nots.  The rich focus on dividing the poor.  And those who are poor and powerless will say it is the fault of the rich and powerful. The most powerful weapon of the powerless is solidarity. Yet I think generalities cannot help either Bulgaria, Hungary or the United States. It's worth taking a look at process, instead.

The other night at dinner in Budapest, a Hungarian activist pointed out that one of the ways that the Hungarian people are denied power is because Parliament has developed a legislative mechanism by which new measures can be introduced and passed without going through the formal review and voting procedure. This, in conjunction with the fact that the Hungarian political system is not a direct representation democracy, means that the people are doubly shut out of the legislative process because they cannot engage with their politicians. To a similar degree this also happens in Bulgaria, and certainly there are mechanisms in the United States that allow the President or state governors to simply issue executive orders.

There is also the question of the degree of control of money that goes to civil society groups/NGOs. As with NGOs in the United States, money that comes from the state or from foundations in Eastern Europe tend to have a lot of strings attached. There can be limits, for example, on whether NGOs can administer grants to smaller groups (this was a concern in Bulgaria for sure). So if you want to do advocacy work in Eastern Europe, there have to be mechanisms for funding that allow people the freedom to innovate, because many reforms are badly needed.

Essentially there are thousands, if not millions, of people in Eastern Europe whose basic needs are not being met. Personal politics aside, if a person does not have clean water, or food, or shelter, or any kind of education, or disability supports, then their basic rights as human beings are being denied and that will cause a tension for whatever system has been put in place for the rich and powerful.

And yet there has been a theme in both Bulgaria and Hungary of whether those whose needs are being denied can be awoken to solidarity. If one's immediate need is what to eat or where to sleep that day, then it can be difficult to begin thinking of the larger picture of social change. And yet I do believe it is the very people whose needs are not being met that actually have the most power to change the system. The role of the community advocates or organizers is to look for the people who can help awaken things, and to build that community so it can do what it needs to do.

What can the people of Eastern Europe do? From what I have seen I think there is a recognition already; there are so many smart and sophisticated people here and they just need that chance.  There is a need for education reform in both urban and rural settings. Those of working age need jobs that pay real money.  There is a need to support the elders who are being forced into homelessness or poverty. There is a need for openness towards Roma and migrants.  There is a need to be kind, to build trust, to break the legacy of fear and suspicion that have built up over hundreds of years. There is a need to recognize when one can help those who are in a worse off place, and to take that action. Even to do something as simple as take your neighbor dinner. That is the start of change.

Of relevant interest, in considering the official version of nationhood, versus the everyday acts of people:
The Hungarian national anthem
The Bulgarian national anthem
The US national anthem

A particular thanks to Anett and Zoli for a conversation that inspired this blog post.