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.

Human Rights Work for Refugees in Hungary

Yesterday, our group of US mentors was gathered by Monika Balint of the Hungarian Anti Poverty Network to go to the Hungary Helsinki Committee (HHC) for a discussion on the situation of refugees in Hungary. We were joined there by Anikó Bakonyi, project manager at HHC; Lilla Zentai, a social worker at Menedék, the Hungarian Association for Migrants; and Aliz Poczuvalski and Basil Hamarach of Mig Sol, a grassroots group of political activists focused on sensitivity and awareness of the refugee situation in Hungary---they also work with an international network of advocates.

A poster for the Hungary Helsinki Committee, featuring a woman with hair holding up two fingers

The Helsinki Accords served as the groundwork for furthering international human rights work. Several countries have Helsinki Committees for investigating human rights issues and furthering solutions.  Bulgaria also has the Bulgaria Helsinki Committee, for example.

Anikó provided us with an overview of the current situation. Prior to 2015, migration/refugees was not a major issue in Hungary. However, in February 2015, refugees became part of the political agenda in a particularly xenophobic way, and it is a topic that generally had been little addressed with the US group until today.

Refugees were spoken of in terms of threats to the Hungarian culture. They were also linked to terrorism. The government ran a very deliberate propaganda campaign against refugees, including posters, radio and such. In response, a group of advocates ran a counter-propaganda campaign with humorous posters.

Hungary does not have a strong tradition of civic engagement. While it is very important to show opposition to harmful ideas, it can be difficult to do this, and the counter-propaganda campaign was a good start.

Numbers tell an interesting story. In 2011, Hungary received about two to three thousand applications for asylum. By 2014, that number ballooned to over 40,000. In 2015, Hungary received 177,000 applications for asylum. However, the interpretation of the numbers is important, because while that is a lot of people, the reality is that many people are not staying to see the asylum process through, and many are not even fully aware they have signed applications for asylum because they cannot read Hungarian.

As the world knows, Hungary is now famous for having erected a fence on its borders to keep refugees out, with only certain zones designated as transit areas through which people can pass.

In the summer of 2015, the Hungarian Parliament passed amendments to its asylum law that made it much more difficult to win asylum. The amendments also had the effect of reducing legal protections for asylum applicants in Hungary. The process does not truly give people a chance because Hungary now only looks at people’s country of origin, rather than why they need asylum. Officials ask what countries the applicants have passed through before, and deny asylum on the basis that people did not previously ask for asylum in another country.

The role of Serbia in the migration problem is very interesting. Hungary claims that Serbia is a safe place for migrants, and does everything it can to transport applicants to Serbia. Hungary’s position is that Serbia has capacity to handle the migrants, but in reality Serbia does not actually have the capacity to do so.

As of September 15, 2015, it is now a crime to pass through the border fence. The rights of migrants were further reduced, with also the risk of expulsion from the entire European Union for 3 to 5 days if caught passing through the border fence. The transit zones do offer a very limited opportunity for passage, but the reality is that most people in migration don’t know that passing through the fence is illegal, and when they are fleeing for their lives, laws mean very little.

If the police catch someone who has gone through the border fence illegally, the person is sent to a trial, ordered to leave Hungary, and interred in a camp to await deportation to Serbia. Naturally the Serbs do not want them and thus people caught in this trap are in limbo. Hungary has actually shipped people to the Serbian border and then provided them with instructions in Hungarian, which they cannot read, to get to the Serbian refugee center.

Hungary does understand that Syrians cannot be sent back to Syria due to the condition of the country. Afghans are the second largest group, and despite the conditions in Afghanistan, Hungary does deport people back to that country. There are some other nationalities that Hungary allows within its borders, but Syrians and Afghans are no longer allowed and the restrictions continue to grow.

Just last weekend in Hungary, the police captured about 500 people. Anikó and the HHC are monitoring this group and reported that conditions are overcrowded in the holding camp, with people and beds everywhere. Many were not detained but again, the situation is disturbing in human terms.

The border fence has proven increasingly problematic and Hungarian politicians are recognizing this. There is now a proposal for a new referendum for “resettlement” for a limited number of people, about 1,200. The problem with the referendum is that it also involves European Union law, and it’s not possible for Hungary to have such a referendum without the support of the whole European Union.

Politically, the issue of refugees is a major distraction. Hungary has plenty of issues it needs to resolve, including for education, the economy and more. The refugee matter has been blown to major proportions, despite the fact that 80% of Hungarians have never met a refugee.

It is currently forbidden in Hungary to show women and children refugees on TV. The public only sees the men, despite the fact that last summer there was a large increase in the number of women and children refugees.

Refugees with disabilities do not have any reasonable accommodations whatsoever. For example, there was a blind man being held in the second floor of a building, and the cafeteria and other key areas were in the ground floor, and unless someone helped him he could not access anything. There have also been people with physical disabilities who need help to eat and toilet, and unless someone helps them that does not happen. The police do not provide any assistance. There is supposed to be a protocol to assist people with disabilities, but the reality is they are not helped.

Anikó pointed out that it is incredibly helpful to have the volunteer networks of Hungarians who have stepped forward to help the refugees. Active solidarity from society makes a big difference for the refugees. She believes it is possible to mobilize people in Hungary, once they see what the problem is. This is difficult when the propaganda machine is in place.

Aliz from Mig Sol discussed her group, which is a group of refugees and allies that have come together in an informal network. They are very politically active, coordinating letters, protests and other tactics in order to increase awareness about the difficulties faced by refugees, and to move people with power to action. They are part of a network with other groups across Europe, and try to share information and encourage NGOs.

She noted that it is really important to provide refugees with paths to actual integration. They need to understand the processes, and have opportunities and programs for housing, jobs, education and more.

Aliz raised the situation of people who had tried to leave Hungary by train over the summer, as this is one of the locations where they have had protests. The conditions for people change weekly, daily, even hourly. The problem with the trains is that people bought train tickets, and then Hungary blocked the train stations. People could not enter to either ride a train or get their money back. They had paid usually about 200-300 Euro for each ticket. When they were blocked, people began camping around the trains in terrible conditions. After a while many began just walking to Austria.

Lilla began talking at this point and said that from her observation as a social worker, the train situations were the most difficult. There were only police, no Red Cross, no supports, no supplies. People were desperate without basic necessities. They also have no information: their location, what to do, who to ask for help. Trust is essential to ensuring that people can begin figuring out their next steps.

At the train stations and other refugee areas, Hungarian officials have gone in and offered people documents to apply for asylum. However, these documents are in Hungarian, and the translation supports are very bad. Often the translator says simply that “if you sign this document, you will be free.” There is no mention of the real system that includes criminal punishment, and no opportunity to explain why someone is a refugee. Sometimes people do get waivers to stay for a limited time, but they are not told of the expiration and are surprised with orders to leave.

Naturally the refugees are blamed for their own situation, and there is no support to learn Hungarian so they can handle the game.

Ronnie Harris from the US group then found the Facebook group Budapest seen, and we looked at the photos on the page. The Hungarian advocates verified that the photos at that page are an accurate reflection of conditions they have seen and monitored.

People from the US reading this blog will of course wonder about the relief and aid groups, such as the Red Cross. Weren’t they doing their job? In Serbia, yes, but in Hungary it has been a different story. The Hungarian advocates told us that the Hungarian aid groups laid low and did not offer help to the refugees, even though they had the resources to do so. In fact, three of the biggest ones, including the International Red Cross, were actually paid $62.5 million Forint (more than $200,000 US) each by the government as a reward for not doing anything.

The advocates were especially bothered by witnessing the Red Cross providing relief to the Hungarian police, and not the refugees. They provided water and support to the police, and even set up misters for the police to cool off on a hot day.

By Christmas of 2015, if you listened to Hungarian radio, there were propaganda pieces against the refugees airing every thirty minutes. If you relied on Hungarian media for your information, you would belief that the country was under serious threat. However, the rate of refugees actually slowed a great deal during December 2015 and January 2016.

In the face of such dreadful circumstances it is important to stay focused on the Hungarian volunteer networks that came forward to help improve the situation. They are a bright light in a very dark night. Even as smuggling of refugees has been big business, the volunteer networks and groups like HHC and Menedek have been accused of smuggling themselves. They face major Facebook troll attacks of hate speech. They call upon the Hungarian and global public to step forward to assist and show solidarity. And yet they push on, to help people with translation, food, documents, and a place to sleep.

***Interestingly, just after the US mentors group left Bulgaria, the word is that Bulgaria has now also closed its borders to migrants as well.

Hungary: Position and Potential

The Hungarian State Opera House at night

Having awoken now on the sixth morning of my stay in Hungary, it is lightly cloudy now after a day of rain, and that mood fits what I want to write.

Those not familiar with Hungary need to know that it is both a place with deep roots and a place over which tides of successive invaders and empires have washed.  The Magyars established the Arpad dynasty in 896 after centuries of rule by a host of other forces, and over 1,000 years their power rose and waned and became involved in some supremely complex politics, including occupation by the Nazis during World War II.  The borders of Hungary have shifted greatly over time, yet modern Hungary still claims as Hungarian citizens those who are Hungarian but live outside its borders.

In today's Hungary, there are Magyar people and there are Roma people. There are many expats.  There are sushi joints in Budapest and tourists with a million cameras buying peasant dolls; there are dirt roads and no electricity in the poorest areas. There is a complex and evolved political system; and yet it is difficult for the public to freely express its opinions.  There are brilliant and sophisticated Hungarians, and yet the options for many are limited because of money or the system.  It is a place in which American community organizers should be mindful that our Hungarian colleagues make only $2.50 US per hour.

Those who organize protests or any kind of resistance here can be subject to very intense government scrutiny. In the US, we take it for granted that we have the right to gather in public and to speak freely about our opinions, including about our government. Here in Hungary those activities have greater risk, and with each passing year this could grow riskier. And yet those who care about the rights of people with disabilities, about Roma, about the homeless, about the poor, about LGBTQIAA people, they are willing to try.

From the disability perspective, I am angered that those people with disabilities who want to live in their own flats in the community, with home services, are prevented from the same range of services we can access in the US.  To only have a personal attendant from 8-4 Monday through Friday, for people with severe disabilities, is not enough. Apparently fewer than five people in the country are able to do this...and yet in Illinois alone we have about 30,000 who do so.

I am angered that Hungarian parents of children with disabilities are prevented from accessing meaningful financial support for their children.  One of Anett's campaigns has been to raise the government stipend for families.  Children with disabilities need every opportunity possible and when the stipend is very little it means that parents will institutionalize the child.

I am angered that the Hungarian school system will not allow, generally, for flexibility in curriculum and physical space to provide for real inclusion in the schools. Hungary is of a size that inclusion could work extremely well.  But the education system holds on to old values of standardization and patriarchy that make inclusion negotiations very difficult. I cannot help but suspect that there are teachers within the system who know what is possible but are barred from doing much.

Last night, Anett, Kristen and I went to see Faust at the Hungarian State Opera.  The building is completely beautiful, a jewel box of an opera house. The performance had supertitles in English and Hungarian so we were all easily able to follow along (the singing is in German). The singers were Hungarian and Ukrainian (Taras Shtonda for the curious minds).

Yet when the curtains opened, there was Faust in his old age...in a wheelchair. The performance made excessive use of up to about eight manual hospital chairs during the performance (there were eight dancers who were supposed to be old people or war vets). It was very odd to us as disability advocates. What is the attitude behind this? Is it creativity or passive bias?

And yet above the wheels, the singers sang soaring arias of pain and love, Faust in an orange and blue golfing outfit, Marguerite in a maid's uniform. And above it all in a soft spotlight above the stage, a large gold replica of the Hungarian royal coat of arms.

Hungary is brilliant. It is also a challenge to itself. All I can really say is that the truth is that the public, the people, are amazing, like lights at twilight, holding strong.