FEATURE ARTICLE

Research on International Disability Issues: Disability Activism in Post-Communist Europe

Much can be learned about the experience of disability by studying how people with disabilities are living, organizing, and advocating for their rights across different social and political conditions.

Recent decades have seen the concept of disability move from a biomedical paradigm to biopsychosocial and sociopolitical perspectives. As a result, disability is no longer adequately perceived simply as a trait inherent within the individual, defined according to biomedical conditions alone, and captured solely according to medical diagnostic categories. Rather, disability is now understood as a complex experience, one that is defined and shaped by the social and political contexts within which it occurs. Much can be learned about the experience of disability, therefore, by studying how people with disabilities are living, organizing, and advocating for their rights across different social and political conditions.

One way to conduct such studies on the experience of disability is to become engaged in international research. In 2002, I began to study the experience of disability activists and disability non-governmental organization (NGO) leaders in post-communist Central and Eastern Europe. I focused on post-communist Europe because I was interested gaining a better understanding of the needs and priorities of disability activist groups in a part of the world where civil society was still in its developing stages. I theorized that the methods and goals of disability activists operating within a robust and relatively wealthy civil society, such as in North America, might be quite different from those in an emerging and relatively poor civil society such as that in post-communist Europe. Such differences, if indeed they were found to exist, could be quite relevant when considering how to form international partnerships between disability organizations, or in providing international assistance to disability initiatives in these post-communist countries. I therefore set off in the Spring of 2002 on a Fulbright Fellowship in post-communist Europe to begin exploring the nature of disability activism and NGO development in that part of the world.

I spent a great deal of time traveling to various parts of the region to meet with disability activists and NGO leaders to conduct interviews. I also met with Members of Parliament, U.S. diplomats, and leaders in the medical communities in these post-communist countries to better understand how disability was perceived by different groups and conceptualized from different perspectives. I talked to citizens with disabilities, their families, and their employers in order to gain some sense of the context within which disability was experienced.

One of the issues that became clear very quickly in post-communist Europe was that people with disabilities, particularly severe disabilities and/or mental disabilities, were given few options regarding where to spend their lives. Institutionalization remains common in much of post-communist Europe for a number of reasons. First, during communism, people with disabilities presented an enigma. Disability was perceived as a human “flaw”, and according to the political rhetoric of the time, human flaws were supposed to be transcended by an adherence to communism. People with disabilities then, perceived as flawed, challenged such rhetoric. The less visible such people were, the less challenge they posed, and institutionalization provides a form of invisibility. Secondly, the push for institutionalization was simply in keeping with the centralization of most social services under communism: large institutions of many types were the norm. Large institutions for people with disabilities therefore seemed normal.

It is important to note that institutionalization was of course not unique to communist contexts. Both the United States and Europe maintained massive institutional infrastructures for people with disabilities for many decades. But as these institutional infrastructures began to be dismantled in the West in the 1960s through the 1980s, their counterparts remained ossified under communism, where citizen activism was forbidden and challenges to authority were very dangerous. The result was a still entrenched, if outdated, institutional infrastructure that did not simply dissolve when communism fell in 1989. While many advances were made in democratic freedoms in the post-communist countries in the years following 1989, certain segments of the population were left behind, as if caught in the restrictions of the past. People with disabilities were one such segment of the population.

I quickly learned that the efforts being made by a small community of disability activists and NGO leaders in post-communist Europe were remarkable and unique. The emerging democracies of the post-communist countries provided an excellent laboratory to better understand the importance that civil society has for groups of citizens wanting to address community health, disability rights, and de-institutionalization. I therefore set out to study the phenomenon of disability activism and de-institutionalization in post-communist Europe for the next 7 years. I received another Fulbright in 2004, and was a Research Scholar at the Woodrow Wilson International Center in Washington D.C. in 2005, both of which allowed me to conduct further study of disability policy and disability activism in the region. In 2006, I was given a Mary E. Switzer Distinguished Fellowship by NIDRR in order to return to four post-communist countries and collect a larger sample of interviews from activists and NGO leaders there.

The result of these research efforts has been a much better understanding of the role that civil society organizations play in the promotion of disability rights, community health, and de-institutionalization for people with disabilities, not only in post-communist contexts, but other contexts as well. I also came to better understand the different priorities of disability organizations in post-communist regions, versus those embedded within more robust civil societies like our own. Importantly, I came to understand the potential misunderstandings that might occur if such differences in priorities are not made clear before collaborative international endeavors or relief efforts are undertaken (see Holland, 2008).

In addition to what I learned about the specific focus of my research, however, I also came to realize the critical perspectives that psychologists can bring to international research on disability issues. There are not many psychologists involved in such research. Our training does not typically involve the kinds of research methods or even the emphasis on global perspectives needed to undertake such international projects. But it is my firm belief that psychologists are urgently needed in such international endeavors. If we are to address complex global issues such as disability, public health, and human rights, we must be prepared to employ our knowledge in ways that are not always emphasized in traditional academic programs. Psychologists have perspectives and skills not possessed by many other disciplines that are more engaged in such international efforts. It is only through an increasing international presence that we might bring these unique perspectives and skills to the service of such important issues.

In the end, my experiences in post-communist Europe allowed me to better understand the power and influence of even small groups of committed citizens in addressing problems in living. The disability rights movement in post-communist Europe is growing rapidly, aided by attention from the press, a well educated citizenry, and a readiness for change. There is still a lot of work to be done, however, and there are still many children and adults who must live apart from their communities and their families due to a lack of community-based supports for people with disabilities in the region. Such work could be speeded by well informed international support and well targeted international aid. Indeed, the purpose and scope of my research was to help inform such support and aid. If this research provides even a small glimpse into the needs and priorities of the disability activists I met, one that was not available before, I will have contributed something to an international and global concern that I now know is deserving of a great deal more attention.

References

Holland , D. (2008). The current status of disability activism and NGOs in post-communist Europe: Preliminary findings based on reports from the field. Disability and Society.