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.