Fifty years ago, people with disabilities in the United States had many battles to fight, and were marginalized, isolated, and in many cases institutionalized, because their minds and bodies failed to meet society’s definition of “normal.” Today in Poland, the disabled are facing these same challenges and more. There is a social revolution going on in Poland right now, and its leaders may be small in number, but they are fighting for some very big changes on the disability front. John Tschida, director of Public Policy and Research at Courage Center, recently returned from Poland, where he shared what he knew of changing public policy with some of the first disability revolutionaries in that country.
It all came about through the Minnesota Council of Nonprofits, which runs a program to bring people from developing democracies to the Unites States to see what role nonprofits (called Non-Governmental Organizations, or NGOs, in Europe) have in shaping public policy in this country. Several women fighting for people with disabilities in Poland visited Courage Center last summer to see what they could glean from what the organization has accomplished for people with disabilities since it was founded in 1928. One of those women was Alina Kosinska, executive director of the Center for Educational Initiatives in Poland.
“They came very excited to see how we shape public policy here and to see different organizations with different missions coming together with a united purpose,” said Tschida. He said that during their stay, they learned about coalition building, advocacy, and the power of large numbers of people coming together in politics. The mission of Courage Center is to empower people with disabilities in reaching their fullest potential.
Kosiniska and her colleagues learned about how other organizations here have fought for the rights of people with disabilities and won. One example is the Consortium for Citizens with Disabilities, a conglomerate of more than 50 organizations that came together several years ago to fight Governor Carlson’s threat to cut home care services for children with severe disabilities. Tschida said the Consortium challenged the governor’s policy decision and won. “He [the governor] wasn’t aware of what the consequences would have been, that these kids would have been put in institutions,” said Tschida.
A little history
Communism fell in Poland in 1989, making it a young democracy with a devolution of power from the central government to the states. At the local level, more control over education spending has been placed in the hands of local politicians than ever before. According to Tschida, local governments in Poland are closing schools for the wrong reasons, to use the money that would have been spent on education somewhere else. “Kids with disabilities are largely marginalized and excluded from the education system,” he said. These children go to so-called “special” schools in Poland that are outside the public education system.
Kosiniska wants to save the schools and integrate children with disabilities back into them, but the cultural and religious context in which they live is a major impediment to social change. According to Tschida, widespread religious sentiment in Poland (95 percent of the country is Catholic) dictates that disabilities happen to parents or their children because they did something to deserve it. “Parents hide their kids with disabilities, and there is a resistance among parents of ‘normal’ kids who don’t want disabled kids in the schools with their ‘normal’ children,” said Tschida. “In many cases, the local education officials and the teachers are working very hard to integrate the classrooms, but the parents of the non-disabled kids do everything in their power to prevent it,” he said.
“This is a huge issue in rural areas, where disabled kids are often forced to live as shut-ins,” he said. “I heard some heartbreaking stories from parents of kids with disabilities whose lives or those of their kids were threatened. Why? Because they wanted their kids in the public schools.”
The agenda in Poland
Kosiniska and her colleagues were so impressed by what Courage Center and others in the disability community here have accomplished, that they paid for Tschida to visit Poland to teach their NGOs in person what they needed to know. Tschida left on November 27 for a 12-day stay and visited Warsaw, Gdansk (in the far north on the Baltic Sea), Krakow (the formal capital and what he describes as the architectural jewel of the country), and Lublin, a regional population center of about 400,000 in southeast Poland.
Tschida’s hosts included a number of small nonprofit organizations working on issues facing people with disabilities in Poland. Many of the organizations are operated by people with disabilities, and as is often the case in the United States, many of the leading disability activists in Poland are wheelchair users with spinal cord injuries.
It was a grueling schedule for Tschida, who gave four formal presentations and was at conferences and meetings, or traveling, from 8 a.m. to 6 or 7 p.m. every day. Tschida spoke with members of Parliament, the Education Ministry, and advocates, who included people with disabilities. At one of Tschida’s presentations hosted by Kosiniska at the Parliament Building in Warsaw, more than 300 people attended. Tschida said attendees were awed by his overview of the Individuals with Disabilities in Education Act (IDEA) that was passed in 1975 to give children with all disabilities in the United States the right to a free and public education. He also spoke about the ADA, integrating children with disabilities into classrooms, employment opportunities for people with disabilities in the United States, public policy changes that have encouraged this, and coalition building and advocacy to help change laws at the state and federal levels.
In addition to issues facing children with disabilities in education, accessibility is, in Tschida’s words, “a nightmare” in Poland, owing to the very historic but old infrastructure with lots of stairs and cobblestones. Tschida, who uses a power wheelchair, had to use his manual wheelchair while inside the country with assistants to help him maneuver stairs, curbs, and other areas. Electric and power chairs in Poland are virtually nonexistent, as are wheelchair ramps and curb cuts. There are no personal care attendant programs in Poland, and most people with disabilities live with family or are in nursing homes, said Tschida.
“Stalinist one-room flats are piled five stories high and together make up the ugly, cinderblock Warsaw landscape,” he said. “Ironically, even at some of the nonprofit health care organizations I visited, where they provide physical, occupational, and speech therapy, as well as mental health services for the disabled, there were no elevators. In these often three-story offices, the staff just haul people up and down stairs as a part of their jobs. They do this without complaint and as a matter of routine. It’s just the way it is. However, that doesn’t mean there aren’t a whole lot of committed people working to change things.”
The transportation system in Poland also represents significant accessibility issues for people with disabilities, said Tschida. Ironically, however, Warsaw has more wheelchair accessible taxis than here in the Twin Cities (where there are three, owned by one company, said Tschida).
Due to the accessibility issues, advocates in Poland are focusing on promoting opportunities for people with disabilities to telecommute. Laws in Poland do allow for cheaper Internet access for NGOs, and they allow people with disabilities to apply for funding from the states to get equipment for a home office. A 1991 Polish law also dictates that six percent of an employer’s workforce consist of people with disabilities; if an employer does not meet this standard, they pay a fine of $200 (U.S.) per employee that goes into a state rehabilitation fund. The dollars are then used to subsidize disability organizations, and also for direct assistance to people with disabilities. They can be used, for example, to purchase computers to pay for training for people with disabilities. The down side is that many of these employers would rather pay a fine than hire a person with a disability.
A philosophical shift
While positive things are happening in Poland for people with disabilities, there is still a need for a huge philosophical shift among business leaders, the government, and people with disabilities themselves, said Tschida. “I let them know what was possible,” he said. “While the leaders of these organizations have increased their expectations, there is still a huge amount of education that needs to go on. They need to believe they can actually make a difference.”
Tschida said he had many conversations with Kosiniska while in Poland, about advocacy, letter writing, and media campaigns focusing on the ostracization of children with disabilities in her country. Kosiniska, said Tschida, runs her organization out of her basement, and is working with members of the Education Ministry, Parliament, people at the grassroots level, and parents to try to make a difference. On the wall in her basement is a map of Poland with schools targeted for closing, exactly like a map someone would post during a revolutionary war. It is people like Kosiniska and Tschida who are leading the charge for a revolution that will be difficult, but that will change the lives of millions.
Next week, read about two more heroes Tschida met in Poland who are fighting for and coordinating rehabilitation and employment opportunities for people with disabilities in their country.