Dana Migaliova

Dana Migaliova is ensuring that people with mental and physical disabilities living in the former Soviet states gain full citizenship rights and access to a better life. She is creating viable, sustainable partnerships among families, policy-makers, and citizen organizations with her ultimate goal to completely transform society’s negative perceptions of disabled people.

As the mother of an autistic son, Dana began her fight long ago to protect him from societal discrimination and indifference. Unable to imagine her child locked away in an institution, which has long been the socially-accepted treatment, Dana decided the only hope for disabled people to live a “normal life” was to set up legal and social systems to support them. Joined by other families, she began building coalitions and demanding that people with disabilities be treated as equal members of society with the right to education, medical treatment, occupational opportunities, and a regular home life.
To realize her vision, Dana founded the Lithuanian Welfare Society for Persons with Mental Disability, or Viltis, which means “hope.” She began by focusing on developing the legal and budgetary frameworks necessary to build up essential services—and also set about educating doctors, school teachers, parents, and policymakers about people with disabilities. Sustained, creative action is the central element of her work; having made great progress in Lithuania, Dana is not slowing down. She is now working intensively with partners in eight neighboring countries to find appropriate strategies for them drawing on lessons already learned in Lithuania.

Life in Lithuania has never been easy for people with mental and physical disabilities. Under Communism, there was strong stigma attached to being different, and these individuals were viewed as a drain on society. Rather than incorporating them into communities, they were banished to institutions and remained there for their entire lives. Many were the victims of barbaric treatment: locked in cages and used in clinical trials that dispensed with the idea that they were actually human beings capable of emotions and understanding.
Those parents courageous enough to try to raise a disabled child independently at home were told to keep their child out of the public view. Because no support groups previously existed for these families, one of the biggest challenges is organizing disparate groups to cooperate for the good of people with mental disabilities. Due to years of shame and misconceptions, many families have to first overcome their distrust of health specialists; likewise, institutions must loosen the reigns and accept that families and community are important aspects in the treatment of disabled individuals.
Given the deep-rooted resistance to incorporating disabled people into mainstream society, governments have been slow to initiate change in the form of laws to protect them. Thus, the responsibility for demanding change has fallen to citizen groups, who inevitably prove ineffective when faced with the daunting task of overhauling a long-established system. Any small advances are undermined by the fact that there is so little cohesion among scattered groups—resulting in dramatically unequal access to resources throughout the region. In many areas even basic information is scarce, which makes creating the best framework for sharing services among people with disabilities nearly impossible.
In spite of the obstacles, inevitably a transformation came about in the early 1990s in the former Soviet states when disabled people suddenly “emerged” into society. After Lithuanian independence in 1989, and ten years after Dana formally registered her organization, the situation for disabled Lithuanians and their families is improving. But there is still much work to do; qualified specialists who work with the physically and mentally disabled are scarce. At this point, only one university provides training—but the curriculum is oriented toward helping children with learning difficulties and thus not sufficient for working with the severely disabled people in need of elementary living skills.
In Lithuania’s neighboring former Soviet states, the situation remains particularly dire: laws do not even acknowledge—much less protect—the rights of disabled people, and the social stigma is stronger than ever. The decades-old mentality persists and people considered to be abnormal are hidden away from the public in institutions or homes.

Dana’s dynamic and ambitious project is two fold: In addition to changing societal perceptions regarding physically and mentally disabled individuals, she is creating a legal framework to effectively protect and support individuals with special needs. For both challenges, Dana needs to involve a wide range of families, citizen groups, governmental organizations, and policy makers.
One of Dana’s primary areas of activity is developing a network of community-based services within local municipalities to serve disabled people. Her organization, Viltis, works in partnership with municipalities to establish preschools, schools for children with mental disabilities, integrated classrooms in mainstream schools, work and vocational centers, and group homes for those who cannot live with their families. It is a true partnership; Viltis commits to secure the funding for reconstruction of a building, buying equipment, providing methodological support, and training staff, while the local municipality commits to covering operating expenses. There are more than 100 educational and occupational institutions currently operating—but most of them still lack well-trained staff. To improve this situation, Dana organizes training seminars for teachers who work with mentally disabled children at schools and kindergartens. The best specialists from all over the country give lectures during the seminars, and Dana publishes instructional manuals for specialists that cover important issues: assessment methods, how to work with the mentally disabled, individual planning techniques, and advice.
The result of Dana’s past decade of work in Lithuania, a country of three million, is impressive. Both the society and government have radically changed their attitudes toward people with mental disabilities. There is now a legal framework for the provision of services and a great deal more openness in the society in general about disability, mental and physical. Parents who used to struggle to care for their disabled children alone now have support and the freedom to work—thereby sustaining their families and the government through tax revenue. To further shift the public view of mentally disabled people, Dana invites volunteers from the visual arts and journalism disciplines to take on intensive, short-term apprenticeships with the organization. In the future, these people will be in positions to present positive images of disabled people and help change the way disability is understood and handled in marketing, media, and advertising.
Dana continues to work to improve her organization, Viltis, in terms of its professional status and work quality. She has been very successful; Viltis now has 55 regional branches in Lithuania and a membership of 11,000—including 4,704 disabled people—and is established as a respected entity in Lithuania. The government even entrusts to Viltis a part of its budget for  its own Program of Social Integration of the Disabled. To keep pressure on lawmakers, Dana founded a parents’ organization to lobby for new and amended legislation. Through their work, the laws now provide medical treatment, access to education, vocational opportunities, and a home for people with mental disabilities. In 1991 Lithuania’s Parliament launched the Governmental Program of Social Integration of the Disabled, including thirteen new laws to ensure equal rights for people with disabilities.
Over the past two years, Dana has focused her attention on spreading her vision to neighboring states—and to catching them up to Lithuania’s improved standard. She currently spends a third of her time working directly with citizen groups and municipalities in Moldova, Ukraine, Armenia, Georgia, Kazakhstan, Bulgaria, Kaliningrad, and most recently, Belarus. Within in the next year, she expects to increase this to half-time. Not the type to show up, lecture, and vanish, she makes these trips memorable by taking along a group of friends and colleagues involved in Lithuania’s process. Her teams include doctors, municipal leaders, parents of mentally disabled children, and representatives from citizen groups. Whenever possible, they arrange for the hosting municipality to cover their minimal expenses for travel, accommodation, and meals. In exchange, for a two-week period, Viltis representatives work closely with their counterparts in the hosting municipality for a thorough exchange of information that has a real, sustainable impact.
To financially support her spread to new regions, Dana exchanges information and implements joint training projects with the following organizations: UB (Sweden), Throskahjalp (Iceland), Enable, EEP, UNAPEI (UK), Geneva Initiative on Psychiatry (Holland), Lebenshilfe (Austria), Djerela (Ukraine), BELAPPD (Belarus), Open Society Institute (Hungary) and many other organizations in Western and Eastern Europe, Canada and the United States.

Dana grew up in Lithuania in a family with six children. Her childhood years were tumultuous, marked by political purges and exile; in 1953, her uncle was shot and killed by the Soviets and some of her extended family was moved to Siberia. One day in the family’s attic, Dana came upon an old Lithuanian history book written before Communism. Reading it, she grew curious and began asking older family members what life had been like under a more open system. She realized that things could be different.
Dana had an early experience learning about disabilities; one of her brothers had Down’s Syndrome. Uncommon as it was at that time, their well-educated father patiently taught him to read and write. He encouraged all of his children to include their disabled brother in family activities, rejecting the idea that a disabled child had to live in an institution or be hidden away in the house. Dana looked out for her brother, protecting him from any harm—just as she would do for her disabled son years later. The family was shocked when Dana’s brother died of pneumonia in 1983 because doctors refused to give a disabled man medicine.
Dana was a bright student and planned to be a doctor, but instead got married in her late teens. The couple soon had a healthy first child—but during her second pregnancy Dana took food to a sick neighbor and contracted rubella. As a result, her son Paulius was born autistic and blind. To get the best care for him, Dana went to stay with relatives in Moscow. For five years, she traveled between Vilnius and Moscow, attending classes in metallurgy and learning as much as she could about her son’s condition and treatment options. She was horrified to learn that institutions used disabled patients for clinical research—and vowed this would never happen to her child.
After graduating, Dana returned to Lithuania with Paulius. Her husband expected they would admit the boy to an institution for the disabled, but Dana refused. When he told her to choose between living with him or living with Paulius, she chose her son. As a single parent during the 1980s, Dana got a well-paying job as a metallurgist, taking the night shift so she could stay home with Paulius during the day. In the late 1980s, she began to see all around her a change in the social atmosphere; people began expressing more openness to individual freedoms.
In 1989, a child psychiatrist friend organized a small meeting for parents of disabled children. An incredible 250 parents attended the meeting and a small, motivated group stayed after to continue discussing. After independence, this group took on the task of establishing a child psychiatry center—without knowing what this would entail or who it would serve. But for Dana it was something; finally she could imagine a way to alter how society handled disabled people and she grew empowered by speaking out about her own experiences as a mother. Incredibly, the stigma was still so pronounced that one television journalist suggested she turn her face away from the camera while telling her story so that she would not be recognized after the interview. Viltis’ first few years were a time of rapid change, new political systems, and emerging ideas. In this climate in 1993, Dana took the courageous step to quit her job and turn her full attention to a problem that desperately needed her attention and passion.