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.

Fostering Collaboration in Hungary

This week, the theme of collaborative work has been a major part of discussions with people working in Hungary. While there are over a thousand civil organizations in Hungary---formal and informal, state funding or private funding, representing a host of interests---the evolution of collaborative work is still in progress.  In the disability sector, collaboration across disability types represents an opportunity to seek social improvements that benefit many more people than one organization can achieve alone.

During her time last fall with Access Living, I know that Anett Csordás began thinking about how the different disability groups might collaborate more. There are common barriers across groups: lack of employment, education problems, support for parents, support for adults with disabilities who want to be independent. Anett's organization is newer than many groups, but they are not alone as other newer disability groups are also emerging.

Yesterday, Anett coordinated a meeting of several national Hungarian disability organizations as well as a few foundations that fund disability projects. The purpose of this meeting was first to have me present on how US disability groups work together, and then also for the groups to spend time together thinking about possibilities for collaboration. To a degree they already engage in collaboration with different groups, and also they incorporate leadership by people with disabilities to varying degrees, but the question is whether Hungary can build a powerful cross-disability movement to build opportunities that provide better inclusion and access for all.

I write on a flipchart while presenting to the Hungarian disability groups.

About twenty people attended the meeting. The organizations represented included:

...SINOSZ, the national organization providing service and advocacy for Deaf and hard of hearing people 
...MEOSZ, the national organization representing people with physical disabilities
...The National Association representing people who are both deaf and blind 
...The Hungarian Environmental Partnership Foundation which is an NGO working on environmental awareness and public education
...The Disabled Persons Equal Opportunities Network which provides a range of programs and advocacy for social inclusion
...The Bliss Foundation, which works on opportunities for children with disabilities
...The Hungarian Rett Syndrome Foundation, which focuses on people with Rett Syndrome
...The Oberon Foundation which serves adults with more complex disabilities including intellectual disabilities
...The Nem Adom Fel foundation, otherwise known as "I Won't Give Up." This organization has people with disabilities employed on staff and has a range of social programs, including a traveling band (US organizations that do disability arts should bring his group over)
...The Civil College, which fosters community organizing in Hungary
...The Angelman's Foundation, serving people with Angelman's syndrome
...The Hand in Hand Foundation, which works to promote opportunities for people with all disabilities but especially mental disabilities and multiple complex disabilities.

My presentation consisted of presenting on Access Living and its work within a variety of coalitions or networks.  For example, we work with the network of Centers for Independent Living, with ADAPT, with the Chicago Housing Initiative, with the Responsible Budget Coalition and more. Our connections provide us with greater access to people, ideas and resources, and give us more capacity to leverage for change.

I discussed the development of the Americans with Disabilities Act, the ABLE Act, and the Workforce Opportunities and Investment Act. For each of these national bills there was a significant level of cooperation and use of multiple strategies.  I shared in particular the story of Justin Dart and the use of multiple advocacy levels to achieve the ADA.

My audience listened generally with careful attention and had several questions. They wanted to know about the structure of early intervention and education in the US, as well as options for housing, especially for people with developmental disabilities. They also wanted to discuss how employment worked, and whether people were in integrated or segregated settings. These matters are both important and complex in Hungary, and in many ways very different structurally from their counterparts in the US.

However, the key component is whether these groups can have a discussion about whether they might form a joint coalition to perhaps focus on one or two key disability areas, such as education, employment or community integration. It is one thing to compare systems, and it is another to change it. Changing systems to improve outcomes and opportunities for people with disabilities can take a lot of time. But collaboration, particularly inclusive collaboration, is the next step. If these organizations could meet again to develop a joint plan for action, that would be another step on the way to progress.  But between yesterday's talk, and a possible coalition, I think more one-on-one meetings need to happen. Anett is committed to this process, and naturally has a personal stake because of her son.

I hope that Hungarians working for disability interests will remember this: each day that passes without improved education opportunities for children with disabilities is a day wasted in the investment of the future of Hungary. I believe that change and collaboration is possible. Yes, we can have those partnerships where everyone feels a real stake in a better future. We cannot afford to live without partnership.

Jaquie Algee talks about coalition building with the Professional Fellows group in Hungary.

In fact, today I am sitting in a room of about twenty Hungarian organizers talking about working together for social programs. The Hungarian Professional Fellows Country Director, Mate Varga, asked the US mentors to provide an advanced training on community organizing. I provided a training on constituency building; Jacquie Algee of SEIU HCIIMK provided a discussion on coalition building, and right at this very moment I am huddled in a corner typing while Branden Snyder of Michigan United presents on campaign planning.  There is hope and energy in the room for Hungary.

Building a Critical Mass for Disability in Budapest

This morning, Kristen and I rode all by ourselves on a streetcar across the river to Buda, where we were met by Anett Csordas' daughter Zoe, who took us to the Csodacsigahaz. This is the therapy school where Anett's organization Lépjünk, hogy léphessenek meets. I will call it LHL for short. The story of LHL, and the stories of the people I met today, are a testament to the power of grassroots organizing and the potential for cross-disability organizing.

Anett's son Eric, who I met at the school, was born with cerebral palsy and is nonverbal. At the time that Eric was born, there was no support for families of children like Eric. Anett managed to work with other parents to create a support group for about 12 to 15 families that met every two weeks. They exchanged information and discussed problems. As their children entered kindergarten, they organized their first campaign, which was to reduce the fees families have to pay for school lunches. They were successful in reducing the fee by half.

By 2011, they had founded LHL, and its goal is to help families of people with disabilities, create supports, and advocate for better community living and education. They are highly interested in creating inclusive school programs and are already at work on an inclusion pilot project. The children include not only those with CP, but also those with autism and multiple disabilities.

The night before, I had spent the evening with Zoe, Kristen, and a mother named Nora Csirok, who is the vice president for the group. Nora has an eight year old son named Oliver who has CP and uses a wheelchair; Oliver's goal is to be the next President of the United States. Nora was very smart and provided a great deal of information about the challenges that parents face in getting a better and more inclusive education for children with disabilities.

For one thing, the school system in Hungary is not a collaborative process. Rather, parents of children with disabilities are told what their child will do. Plus, the entire system is under strain due to an overly rigid education process, against which teachers across the nation recently rebelled in a 2,000 person march in Budapest. A coalition group organized that march and LHL is part of the coalition. Funding and government support are both highly problematic. At first glance, it can appear that there are no opportunities for progress.

However, this morning Anett had gathered a few dedicated mothers as well as two adult advocates with disabilities who live independently. Their goal was to hear from me, but my goal was to see what progressive cross-disability action could look like in Hungary. They are all doing community building work already and are looking to take their efforts to the next level.

Edina has two children, ages 13 and 15. The 13 year old has a disability. Edina formed a listserv for parents to exchange information and support, and today the listserv has about 250-300 subscribers.  This listserv is able to reach parents in rural communities, who have exactly zero support. Gaining access to information is a major issue in Hungary, especially because as it is families have little power to change their lives. Edina talked about the big education protest, and how LHL signed on to a coalition letter supporting reforms in education, but LHL also pressed for an addition to the letter that included demands to improve education for kids with disabilities. Clearly, Edina and the others saw crisis as a possible opportunity for reform.

Anita is from a small town 80 kilometers from Budapest. She has three children, the oldest of whom is 8 and is autistic. He has actually multiple disabilities, including physical. The autism diagnosis really changed her family's life. There are autism-specific groups that provide a lot of support, but Anita is part of another aspect of LHL---its effort to train parent leaders around Hungary to lead groups of their own. Anita's own group is so active it has actually almost completed the process to become its own NGO. Her association started from a blog she keeps as a parent of a child with a disability, and actually it got a major boost from hiking events she coordinates for families, with and without disabled kids.

Csaba is a 37 year old man with CP who is pretty much the only person with his level of need who lives independently in Hungary, as far as people in the group know. Csaba has been highly active with Critical Mass in Hungary, helping to organize a disability specific protest called Rehab Critical Mass. He uses a power chair and has an attendant who works for him 4 hours a day, but his service hours are limited by the government to 8 am-4 pm, Monday through Friday.  Strangely, Csaba's independence means he does not qualify for community supports he would get if he lived with family.

Anett has been working closely with Csaba to organize from a cross-disability standpoint. For the last Rehab Critical Mass (there have been two and there will be a third on May 15), Anett and Csaba co-wrote the main letter of protest with demands. For those who are curious, Csaba reminds me a lot of Chicago's Larry Biondi, with his speech, pointer, and computer.

Monika has four children, the youngest of whom has Asperger's. Monika was also a rock star today because she was the English/Hungarian translator. She is also the treasurer for LHL. Monica's biggest goal is to see her son in an inclusive placement.  I will meet her son on Saturday when LHL throws an open house.

Peter is 47 and has dwarfism and uses a manual chair. Peter has been very active with Rehab Critical Mass and also a group called Living Memory. He is independent (except for mowing the lawn) and currently lives outside Budapest, though he will move back soon. He has applied to the Professional Fellows program and hopefully will be visiting the US sometime in the next year. He said the Rehab Critical Mass in May will be a celebration of the whole movement of all people with disabilities, across all the sectors. He pointed out that there are 450,000 people with disabilities in Hungary.

Clearly, all of these people are active in specific ways to build the capacity of the community. Anett also has the goal to create a resource book on disability education in Hungarian, because there is no such tool in Hungary right now. Her goal has been strategically to educate parents, because most parents of kids with disabilities are vastly under-educated on the possibilities in education. She is also working to help different disability groups see whether there is possibility in working together in coalition.

One of the major things that Anett learned in the US is the value of the disability community uniting at needed moments. It is clear that the different disability sectors in Hungary share some commons concerns. No one is happy with the education options available. No one is happy with the employment options available. And everyone is concerned about resources in the countryside.

As the week progresses, this conversation will continue. Again, sometimes where there is great crisis, there is great opportunity. The parents and disability advocates I have met thus far in Hungary seem ready for this challenge.

Deaf and Hard of Hearing Issues in Hungary: SINOSZ

This morning, Anett Csordas and her daughter Zoe picked Kristen and I up from the Hotel Carat, to go to the offices of SINOSZ.  SINOSZ is the national organization providing services and advocacy for Deaf and hard of hearing people in Hungary.  Their offices are located in an area of Pest that is known for a large number of embassies.

The door to the offices of SINOSZ. The sign is at left.

 We were greeted by Róbert Ormódi and Andrea Jámbor. Robert is the executive director and Andrea is a Deaf advocate. Our goal in meeting was for me and Anett to learn more about SINOSZ and what they do. For me, it was important to understand their efforts from an international Deaf perspective; for Anett, it was important to understand their work in her efforts to coordinate greater cross-disability advocacy in Hungary.

Róbert gave us a summary of SINOSZ and its history.  It is one of the oldest disability groups in Hungary, and its formation stems from the frustration of Hungarian Deaf people against the Treaty of Milan in 1880.  The Treaty was the outcome of an international conference of Deaf educators who wanted to determine the best method of teaching Deaf people to communicate: oral (speaking) or manual (sign).  The oral educators won and from that moment sign language went underground around the world.

In response, Hungarian Deaf people organized to protect themselves, sign language, and to create opportunities for themselves in society. SINOSZ formally started in 1907.  The government had begun setting up institutions for Deaf and hard of hearing programs, but these places have always been oral and sign language has been more underground. In the 1920s, a national organization for hard of hearing people also formed.

SINOSZ has had its current name since the 1980s, and it has combined now both Deaf and hard of hearing interests.  Hungarian Sign Language (HSL) has been formally recognized by the the government since November 2009.  However, education at Deaf schools is still oral, and SINOSZ is lobbying for sign language to be used in a bilingual approach at these programs. If you look at this link, Hungary is supposed to use sign language in those programs starting in 2017, but the question is what the reality is.

 Róbert also told us that SINOSZ really only works with Deaf and hard of hearing people age 14 and up. Through a national network, they provide: access support, sign language education, info referral, news interpreting in HSL, help with finding employment, trainings and awareness sessions, and also help coordinating with the 22 HSL interpreters working in the country right now.

In Hungary, generally when a child is found to be Deaf or hard of hearing, the decision of the parents determines the course of their education. Generally, parents want their children to learn how to talk. There are schools for deaf children specifically, but the quality of the education is lower and generally it is very important to make sure you have extra time to explain things to students. Students who attend a mainstream (regular) school finish primary school at age 14. Student who attend a special school finish at age 16 or 17. More hard of hearing students tend to finish primary school than Deaf students.

For those who graduate primary school, the options are limited. Only one high school in Budapest will accept hard of hearing students. At the age of entry into high school, a survey found that hard of hearing students tend to read at a 4th or 5th grade level, and that Deaf student read at a first or second grade level.

SINOSZ is of the opinion that the problem in education is not necessarily teaching methods, but a problem of curriculum content. Deaf and hard of hearing students are usually taught a different, much lower level, curriculum than the hearing students. Anett asked Róbert whether inclusive education might be useful, and my understanding of the answer is that he said inclusive education could help improve the curriculum for Deaf students. However SINOSZ still supports the special schools.

In regards to assistive technology, Deaf children are increasingly getting cochlear implants (the question as all over the world of course is whether they work). Generally the state pays for hearing aids and cochlear implants for children. Over the age of 18, many adults get a discount on these technologies---the state pays 70%, and the person pays 30%.  This is still a significant cost for many.

Róbert said that in 2011, it was found that there are 60,000 hard of hearing Hungarians, plus 8,000 Deaf Hungarians. SINOSZ has about 15,000 members. Róbert knows of 36 members who definitely are also dealing with other disabilities. SINOSZ's structure is that it has 14 county/province coordinators, who are each responsible for two counties and coordinate programs.

Deaf-blind people are served by a different organization and tend to be supported separately from SINOSZ. Deaf-blind people are able to work, but they work in specific workplaces that are set up specifically for them. In contrast, hard of hearing people hold jobs throughout society, with many being late deafened, but Deaf people experience great difficulty in finding good work.

At this point, Róbert provided us with a quick tour of the offices and went to help work on a conference on systems change being held in one of the rooms. We had the opportunity to talk with Andrea a bit more...I shared the situation for Deaf people in Bulgaria, and she talked about her work, looking to the future to do research in pharmacy. She will be attending an event in Washington, DC this June, so I hope that she will be able to make connections with awesome Deaf people there.

SINOSZ is a strong and vibrant organization, and I was very impressed. There is merit to focusing on a particular sector with all of your time and energy, especially when it is possible to achieve results nationwide. I do think it might be possible, if SINOSZ and other sector groups might spend a little time collaborating, to possible achieve some overall things like improving education and jobs. Who knows? Hungary is a complicated country, and my job right now is to keep learning.

Left-right: Kristen Gaspar, Andrea Jambor, Róbert Ormodi, Anett Csordas

***If any of the above information is incorrect, please contact me and I am happy to update. Given that translation was from spoken Hungarian to spoken English to ASL, we had multiple layers of communication and some points may have been lost.

Update on Deaf Issues in Bulgaria

Some important points concerning the Deaf people of Bulgaria came up as I was leaving for Hungary, and I wanted to share them especially for US readers.

The thing to know about Bulgarian Deaf issues is that nobody really knows for sure exactly what is going on. However, the following items seem consistent:

...Bulgarian sign language is not an official language, and the linguistics work has not yet been done to show that it is, in fact a language. The situation is complicated by the fact that during the Communist era, there was an official book for sign language, but the book was made without the consent/input of the Deaf community, and thus the vast majority of the signs are not actually in use by Deaf people. This contributes to the difficulty of surveying for a national consistency of sign language use.

...Because Bulgarian sign language is not codified or official, this makes it difficult to train and employ sign language interpreters. The Bulgarian Union of the Deaf has trained over 400 people in sign language interpreting, but only about 20 work in a regular capacity as interpreters. Of those, only 2 are very good, in part because they are also linguists. The shortage of qualified interpreters is hugely concerning given the situation Deaf people face that carry great risk: legal matters, doctor visits, school meetings and more.

...Payment for Bulgarian interpreters is very different from the US. Every Deaf person in Bulgaria who qualifies or applies is given 25 Euro per year to pay for interpreting services. Thus, using interpreters is the responsibility of the Deaf person. The 25 Euro is administered by the Bulgarian Union of the Deaf. I do not know what happens if the Deaf person does not use the money for interpreting. ?

...Sometimes interpreters appear on national television, but Deaf people do not know what the interpreters are saying because of the lack of consistency in signing nationwide. This means that Deaf Bulgarians do not have access to information from TV, and rely usually on Facebook, especially Facebook groups.

...As Deaf and hard of hearing people have become increasingly frustrated with the status quo, some of the younger community members are looking for ways to diversify.  One good example is the group called Listen Up, which is run by people who are Deaf and hard of hearing who want to set up and expand video relay services across Bulgaria.  In the US, diversification of community efforts has provided a wealth of choices for Deaf and hard of hearing people, but in Bulgaria this effort is just beginning.

If you go to this link, you can see that Listen Up is beginning the very important work of exploring how to grow capacity for sign language interpreters.  With Eastern Europe's transition to democracy in 1989, in some countries Deaf people have forged ahead to create new opportunities, but it seems that in Bulgaria the Deaf and hard of hearing people have been left out of progress.  However, there is a recognition that formal official development and acceptance of Bulgarian Sign language, as well as capacity building for training intepreters, and reform for paying the interpreters, are keys to fundamental basic access.

Like any oppressed community seeking to surge ahead, progress can be impeded by competition and egos.  I hope, however, that Bulgarian Deaf/hard of hearing advocates will stay focused on collaboration---there is too much to lose. I would urge US ASL experts to take a close look at what is going on in Bulgaria, because there is a real opportunity for transforming the social and economic situation of Deaf Bulgarians.

Organizing for Disability Issues in Bulgaria

Our week in Bulgaria has been just busy, busy, busy and our last full day in Sofia was no exception. Kristen and I met Stoyan, Nersi, other school staff and the yellow resource bus on a corner of boulevard Vitosha, and drove over to the Sofia Center for Inclusive Education, where we would spent the next several hours doing an organizing training for the National Association of Resource Teachers (NARU).

Stoyan is the secretary for NARU, and Peter Lazarov is a board member (Peter is also an occupational therapist). The chair is Kaloyan Damyanov, who is the principal of the Sofia Center for Inclusive Education, and with whom I had had a very nice exchange earlier in the week. Stoyan, Peter, Kaloyan and their colleagues are taking NARU beyond the status of “professional organization” to an organizing effort with some real force.  This was the purpose of the day’s workshop.

Last month, NARU leaders had met to develop a national platform for reforms in educating children with disabilities.  They also elected key leaders from the six regions of Bulgaria to build NARU’s organizing capacity and to raise the visibility of disability education across Bulgaria. These people, and others such as the local union leader, were among the approximately 15 workshop attendees.

Not only is NARU organizing disability educators across Bulgaria, but as Peter explained, the goal is for NARU to form an international organizing coalition with groups in five other Eastern European countries. NARU focuses on educating children with disabilities, but the other represent a range of interests in the region. Together, the idea is to bolster European community organizing in the East.

These are big ideas, but they also come at a time with the Bulgarian government is requiring a shift in special education---teachers will be assigned to specific schools rather than being homed in Centers for Inclusive Education. Special schools are either being dissolved or administratively assigned to regular schools. Institutions for children with disabilities are being phased out and children are being moved to group homes or foster care. By 2025, the Bulgarian government intends to close ALL institutions for children with disabilities. 

The transformation of the educational and living environment for children with disabilities is naturally causing tension for school staff, who must grapple with new requirements and are concerned with possibly losing their jobs. Because of the transition to democracy in 1989 and evolution of the modern Bulgarian school system, the whole sector has evolved and continues to evolve, with all the anxieties that change involves.

NARU’s organizing offers a possibly stabilizing opportunity for teachers and staff interested in children with disabilities.  As we in Chicago have seen with our public schools budget crisis and the rise in the power of the Chicago Teachers’ Union, crisis can offer an opportunity to make previously invisible issues ones of public importance.  This can help protect and defend the sector, and collect public support.

NARU’s core team that planned the day’s workshop has a very good balance of vision and personality. This was very apparent to me as Stoyan led off the workshop by explaining the day’s topic of community organizing, and how his experience at Access Living helped him think about what NARU needed.  When speaking formally, Stoyan is informative and well spoken, but I think people know that he is also funny and warm, and I think people in the room see him as a leader (I am very proud of you Stoyan!).  Peter presented the broader vision of what regional organizing could do, and its relationship to the international coalition---he is very serious and knowledgeable about this and I could hear the quiet in the room as the people listened.

At this point, it was my turn to present, and Mitko Ivanchev stood with me to translate into Bulgarian.  Mitko, by the way, is an exceptional and curious translator, and I hugely enjoyed working with him---he had even been learning some ASL.

I present, with Mitko Ivanchev translating.

 Participants talk to each other one-on-one.

I provided a presentation on the use of multiple strategies in advocacy, explaining what Access Living does and my role. I discussed the “Pitchfork” strategy, which will be familiar to many in ADAPT, as well as more detailed considerations for relationship building, media, teamwork, and planning. Then, I led the group in an exercise called the “Shopping Game,” designed to test a group’s collaboration.

The Shopping Game uncovered a need for one-on-ones, because as it turned out, many attendees did not know each other.  So I then assigned the group to divide into pairs and spend ten minutes talking to each other. At the end of the ten minutes, people reported on what they learned about their partners.  This conversation stimulated a lot of positive connections and I could see the group relaxing. They are, after all, used to listening to children and analyzing possibilities.

We then asked the attendees to stand up and describe their own positive skills and attributes as organizers in their communities. This was a little uncomfortable for some as many people put the interests of others ahead of themselves.  However, the people who talked about themselves did a wonderful job explaining their passions and abilities. For organizers, it is important to own one’s skills and abilities in the face of those who question us.  It is also important to own one’s weaknesses, but for today the focus was on positives.

At this point we also asked the group to spend a few minutes writing down ideas for themselves as NARU organizers for the next six months. As it turned out, many had the same ideas: one-on-ones, connecting NGOs, collecting stories for media, increasing visibility on social media, and more.  Many were very energized and we the NARU leaders and I were excited to see the group develop with new information and challenges.

*Unfortunately Kaloyan Damyanov was unable to attend the workshop, but my meeting with him earlier in the week gave me an impression of a man with great energy and assertiveness---an excellent choice to have as the chair of any effort.

Afterwards, a group of us ate lunch at an Italian place around the corner, which served some really American-tasting pizza. Delicious. Sadly, it was at this point that we had to part with Stoyan, Peter and Mitko. I wish that we had been able to stay together for a longer time, at such an important period for NARU. But I am happy with the work that we did get accomplished, and I am very interested to see what will happen next! This is not goodbye, my friends.

In particular, I would like to say to Stoyan: I am so impressed with the work you are doing in Bulgaria, and your country needs more people like you. It is clear that you have helped many people wake up to their own potential, both children and adults alike. You made both Kristen and I feel at home in Bulgaria, and everyone you asked to help us treated us with warmth and great courtesy. In so many ways you are a great role model and collaborator. I have a lot of hope for you, and I am so honored you took so much time to show me your home town and “the real Bulgaria.” Remember: as an organizer, you can make the dead walk.

After Kristen and I arrived back at the hotel, I met with Antoaneta “Toni” Nenkova, who was another of the Bulgarian Professional Fellows who came to Chicago last fall.  Toni took me to a café called “Confetti” and treated me to ice cream and a cappuccino. She is a journalist and human rights investigator who has been focused on the issue of institutionalized children in Bulgaria for the last 15 years.

 With Toni Nenkova.

I asked Toni what she thought that the deinstitutionalization movement needed from the US. Toni pointed out that the Bulgarian government is making the closure of institutions for children a top priority, and that by 2025 all Bulgarian institutions for children will be closed. But, what is needed right now in Bulgaria is expertise on social inclusion and integration for both children and adults in Bulgaria.  To this end, she had spent the last week in Amsterdam looking at adult day programs in the Netherlands. The US also has a lot to offer in this area.

Once Toni returned me to the hotel, it was time to go out for a final dinner with the US cohort in Bulgaria: Regina, Leah, Joanna,  Mike, Anthony plus Kristen and I. We went to a traditional Bulgarian restaurant called Manastirska Magernitsa and tried different Bulgarian specialties. Everyone was a little tired from doing trainings, seeing sights, and for some, staying up very late at night. Given that we had been spread out across Bulgaria for he last few days, it was good to see each other.

 The menu cover for Manastirska Magernitsa

At the end of dinner, our Bulgaria Country Director Emil Metodiev gave everyone a framed photo of themselves that he had taken. I would really, really like to thank Emil and also CEGA staff Vladi Petkov for their efforts to make a wonderful experience in Bulgaria this week. It has been a completely unforgettable stay in a country that is full of amazing experiences.  Thank you both so much!

And now, on to Hungary….

At the Front Line: Pazardzhik and Koprivshtitsa

Movements to change social situations usually have people who lead the way. Kristen and I were very lucky on Friday to be exposed to two such movements in Bulgaria: the movement to advance education for children with disabilities in Pazardzhik, and the movement to free the Bulgarians from Ottoman rule in 1876, in Koprivshtitsa. For both, there have been those who organize.

Friday morning, Kristen and I had a lovely continental breakfast at the Hotel Primavera in central Pazardzhik, and at 9:45 Stoyan and Nersi picked us up in the resource center bus.  They drove us to the Pazardzhik Center for Inclusive Education, part of the national network of resource centers serving schools nationwide. This particular center was the first in Bulgaria to use goal planning for children with disabilities, similar to that used in the US for IEPs. Its symbol is a curved rainbow with birds. Here is where Stoyan is a supervisor.

This particular center is housed in the same building as a special school for children with mental disabilities (we would say intellectual/developmental disabilities in the US). Over the next year or so, the children in that school will be sent to other programs as Bulgaria undergoes a transformation in its special education structure. The Center for Inclusive Education will take over the rest of the building. At this location, a kindergarten and a secondary school are also within a block, all within walking distance of Stoyan and his colleagues.

We went in the building and were immediately greeted by Gari, who is the principal of the center, as well as the principal of the special school.  Gari made sure that we had coffee as well as cheese pastries for breakfast, which were delicious. I made sure to give Gari and Stoyan materials from the Northwest Down Syndrome Association, which is a parent led disability group in Portland, Oregon. Thank you to Angela Jarvis-Holland, Angela Frome and Abby Braithwaite for their materials.  They have wonderful photo-based items that promote the message of inclusion, and they are one of the best parent groups I know in the US.

The plan for the morning was that the Center would do a ceremonial opening of its newest sensory room, and that I would cut the opening ribbon with Gari, as guest of honor. The trick was that I also had to say "CHES-ti-TAR!" which means something like "best of luck on your efforts." We all went upstairs to the hall outside the new sensory room, where about 20 people gathered with balloons as well as a Bulgarian welcome bread with honey. Kristen and I had a little bread and honey, and then Gari did a speech about the importance of the center and the new sensory integration bread. Together, Gari and I cut the opening ribbon (in green, red and white flag colors) and said, "CHES-ti-TAR!" and everyone cheered. They gave me a piece of ribbon to take home to Access Living.

Then, we went into the sensory room where a Bulgarian TV crew showed up again to film the event. Maria, a new resource teacher, and a fiver year old girl named Pepi with Down syndrome, played on the equipment to demonstrate its purpose.  You can see the news clip at this link. After this, Stoyan introduced me to his colleagues at the beginning of a learning session for the teachers on sensory integration, and we took a tour of the center, the kindergarten and a quick visit to the secondary school across the street.

I would like to highlight the following points, especially for US people reading this blog:

...Just like US special ed teachers, Bulgarian resource teachers and staff are very caring and work very hard to support the growth of the children. They are paid relatively very little (about $350 US per month) compared to US teachers, and work hard with limited resources. Often, the teacher make or build things themselves that the children need, such as the equipment in the new sensory room. Staff built the swings and painted the room themselves, for example. Ready made equipment is not affordable.

...Stoyan's specialty is working with blind children, but here again, resources are greatly lacking even for students with potential.  The school cannot afford a Braille printer and paper, so for example Stoyan made a Braille curriculum for blind children with a manual hole punch. It took him six months to make. Magnifiers, especially digital ones, are extremely expensive also. BrailleNotes are too expensive.  I would very much like to see if there are ways that the US can assist to provide support because there is no reason these children should be left behind.

...Right now, inclusive classrooms mean that for mainstream rooms, only about up to three students are included.  Total class sizes can range from 10 to 35. Like US teachers, Bulgarian teachers have paperwork obligations (and no one really likes paperwork!). But the resource teachers also have to teach regular teachers about inclusion, and some are resistant. Others are already supportive.

...The children, whether Bulgarian, Roma or Turkish, are SO cute. In general the children I saw were well behaved and the teachers had taken steps to work with children who have behavioral issues.  Most children I saw were between the ages of 3 to 7.  Like US children, they like to play, sing songs, learn stories, and volunteer in class.  They take naps in the afternoon on little beds and breakfast and lunch is provided to them so they are fed.

...Bulgarian schools have work to do in terms of physical access. I have seen some ramps, but more schools need to be made accessible so that children with physical disabilities (and parents with physical disabilities) can get in.  In fact, this was one of the requests of the Edelweiss school in Velingrad. They want to include more children with physical disabilities so they need ramps.  However bathrooms also need access improvements, and most doors are what Americans would consider narrow.

...The Bulgarian educators I have met take great pride in their work. They share joy with the children, and I think they hug and pet children more than American educators do. The classrooms are usually decorated with many colorful posters, toys and books, and the sensory rooms are filled with creative touch and visual options. I was very impressed with Stoyan's interactions with the children he works with---you can see the love, patience and encouragement, and the children respond.

To me, with educators like there, the hope for Bulgaria's youngest children seems very bright. And yet over this week I have also heard of the crisis in disconnected young people leaving school, or receiving poor educations for a variety of reasons. I hope that the communities around the schools can maintain this sense of positive hope and joy.  As my friends at NWDSA say, kindergarten is the front line of the disability movement. Here in Bulgaria, in the kindergartens, I see hope. It is written in their eyes, and it is a resistance against everything that keeps Bulgarians oppressed.

As Stoyan took us on our tour, Pepi's teacher Maria joined us because Pepi had gone home. Our plan for the day was next to visit Koprivshtitsa, a mountain village famous for its National Revival architecture. We asked Maria if she would like to join us, and she said yes right away. So Maria joined Stoyan, Kristen, Nersi and me, and away we went in the resource center bus to Koprivshtitsa.

The day was foggy and rainy, and the road through the Sredna Gora mountains was winding and steep.  We made a pit stop in a town with a monumental sculpture featuring one of the Mongolian rulers that ran this area long ago. After some two hours we arrived in Koprivshtitsa, tucked in a mountain valley famous for sheep herding and for its preserved homes, which were saved by wealthier people who paid Turkish invaders not to burn their houses to the ground.

Stoyan and Nersi led us on a walk through this wonderful town, stopping especially to note sites of historical interest from the April Uprising of 1876, which was an effort to push back against the Ottoman empire after 500 years of rule. The April Uprising contributed to the re-establishment of Bulgaria as an independent nation in 1878.

In particular, Koprivshtitsa was the home of Todor Kableshkov, a young man who was a main organizer of Bulgarian resistance against the Turks. He was a clerk and a mailman and this made him wealthy for his day. Yet he also called his fellow Bulgarians to arms, and in April of 1876 a conflict with Turkish soldiers forced the hand of Kableshkov and his fellows. They engaged with the Turkish army on a bridge in Koprivshtitsa.  Because it was unplanned, they were unable to muster reinforcements for the region.  There had actually been planning since the year before for an uprising, but things moved faster than anticipated.  Kableshkov was able to flee and fight broke out across Bulgaria, but he was ultimately captured and committed suicide at the age of 25. He is buried in Koprivshtitsa near his home.

Kableshkov was famous for writing a letter signed with the blood of a Turkish governor.  It called upon the local revolutionary council to take up arms against the Turks. Here is the letter in English:

Brothers!
Yesterday Neceb Aga arrived in our village from Plovdiv, and asked to imprison some people, including me. When I heard about your decision, made at the Council of Oborishte, I called up some brave men and after we got armed, we headed towards the konak and attacked it, killing the müdür and some policemen... Now, as I am writing this letter, the flag is waving before the konak, rifles shoot and the church bells echo simultaneously with them, men are kissing one another on the streets... If you, brothers, happen to be true patriots and apostles of Freedom, then do follow our example in Panagyurishte...
Koprivshtitsa, 20th April (old style) 1876 T. Kableshkov

And so, Todor Kableshkov was one of Bulgari's most important community organizers, helping to lead a wave of change for Bulgaria.  And in this Stoyan and his colleague are similar---not using guns but knowledge and creativity to create a better future for all those in Bulgaria.