Independent Living Rises from Ruins
 by Alan Toy (New Mobility, March 2006)

My driver, Vlada, is taking me through a prosperous Belgrade suburb. Beyond the hedges on our left is what remains of Slobodan Milosevicís house. We are on our way to the Center for Independent Living of Serbia. Weíve already passed several bombed-out government buildings. It is an odd thing to be making new friends in a country so recently bombed by my own. I feel a bit like an imperialist invader, or at the least, someone to be viewed with suspicion. I am feeling anything but peaceful as we drive to the center. But already I have begun to sense a true kinship with my hostess this afternoon, Gordana Rajkov, one of Serbia and Montenegroís most dedicated disability activists, and one of the founders of CIL Serbia.

I am delighted to discover that they have brought three prominent people in to meet me and to participate in the conference -- Milica Mima Ruzicic, from the Living Upright Center in Novi Sad, Serbia; Fikret Zuko, Director of the Association for the Blind in Sarajevo, Bosnia and Herzegovina; and Gordana. The day before we have gotten to know each other a bit and now we are taking a break from the conference to meet with other disability rights activists at the CIL.

I donít know what to expect or how advanced the IL movement will be here in former Yugoslavia, but it isnít long before I find myself sitting with an amazing group of individuals whose knowledge of independent living philosophies is sophisticated and well developed and whose expectations for a better future for people with disabilities in their now separate countries are very high.

The CIL is a small place, crowded with people, various office supplies and orthopedic equipment. Among those at the conference table are Gordana and Fikret, the president of the Centerís board of directors, administrative staff, a lawyer who is writing the first Serbians with Disabilities Act, several consumers and some personal assistance workers. They are all excited to have a visitor from the states and are eager to tell me about their programs, especially the first personal assistance program ever developed in the Balkans. This is the real deal, even if it is in its early development.

There is a lot of ground to cover in eastern European countries before societal access is a given. The older architecture and infrastructure in the built environment is extremely challenging. The history of inclusion is spotty at best and the social services and benefits programs are still inadequate. But there is vision, guided by folks like those around the table with me who want to turn the "disability problem" into opportunities for social change.

Gordana has been an active participant in international IL collaborations since long before the Balkanization of Yugoslavia. She contributes regularly to the Independent Living Institute, a project of the European Network on Independent Living, which grew out of a three-day conference in Strasburg attended by more than 80 people with disabilities gathered to discuss personal assistance and other IL issues. In 1997, Gordana visited Dublin, Ireland to learn more about IL and to share her experiences as an activist with muscular dystrophy from Serbia.

This initial visit has led to a series of exchanges and collaborations between Irish and Balkan activists and their supporters, including the experimental personal assistance services program now in place at CIL Serbia. During these cross-country exchanges, almost a dozen people from Balkan countries have traveled to Ireland to get PAS training and skills.

The majority of people with significant disabilities are cared for by their families, "locked in a permanent child-parent relationship to deal with tradeoffs between love and dependency on 'kin sacrifice'", according to Gordana. She is dedicated to changing that by introducing the concepts of PAS to her fellow countrymen and women. With the end of the internecine wars, the former Yugoslavian countries are poised to make some changes. Membership in the European Union is on everyoneís mind, and treatment of impoverished, disenfranchised minority populations, including people with disabilities, is key to passing muster for eligibility to join the EU.

Mima Ruzicic is another one of those Serbians who knows from personal experience how difficult the road to full participation will be. Born with cerebral palsy, Mima is beautiful, brainy and on a mission. She is one of the most compelling speakers at the conference. When Mima talks, everyone listens. Her journey to IL activism began at age 18 when she left her village to attend high school. Her mother, at great personal cost to her family, traveled with her and then on to college, living with her in the dorm as her personal assistant, to help Mima follow her dreams.

Now a postgraduate student in linguistics, Mima is also determined to establish a PAS program in Serbia and Montenegro. Her mother is aging and can no longer be relied upon for help. Any kind of payment program for PAS services is a leap forward from merely offering free food and lodging to prospective workers. Thus, the pilot Personal Assistance Service Project of the CIL has significant implications for her and others with disabilities throughout the region.

Through her Irish connections, Gordana has gotten funding for the PAS pilot but it is only for a few years. The big question before them is how to keep this going and growing without compromising their IL principles.

"Funding is a major problem, particularly funding for advocacy activities. We need to be clear about what we mean by independent living and argue clearly why this should be enabled through state funding", she argues. It sounds all too familiar to me. I wish them well.

The folks at CIL Serbia relate a parting story to me that is a measure of their success. At a recent conference in Sarajevo, activists from around the Balkans gathered to plan their futures together. Many of them are old friends and colleagues who were temporarily forced to put their relationships on hold until peace was restored in their region. The ministers of social affairs from each of the new countries created out of former Yugoslavia all attended, too. With palpable excitement, these new friends of mine proudly share that this was the first time representatives of all these countries had met for any reason since the warís end.

The implication is clear to me. Not only are these people the new leaders in efforts to promote independent living philosophies in South East Europe, they are also at the forefront of the global peace movement. I leave CIL Serbia that day with a feeling of awe, humility and true hope for their future.

last update: 04-08-06
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