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Bojana Rozman, PhD, speaks about developing community-based support in Croatia and the importance of listening to the people we work for.
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“You have to retain your capacity to be outraged.” – Charlie Lakin
Placing people in an institution is like receiving a jail sentence for no reason. If it were so great then we would all be standing in line in front of institutions, waiting to join in. Our NGO, the Association for Promoting Inclusion, was established as a community-based alternative to institutions with the goal of supporting the process of deinstitutionalization in Croatia. What became our very strong motive was seeing how life in the community affected the people we support. Seeing this change happen very quickly was a huge motivator for us. The first few people who had previously lived in institutions began receiving our services and started advocating for others still in institutions—to get a friend out. Very quickly, it became a movement. What was very important to us was to really listen to the people; to take what they say very seriously; to always be on their side in how we support them; and to ask: Who is the one who makes decisions about their lives? Who do we listen to? Over time, our program changed to reflect the feedback from the people we supported. When they started saying, “I would like to live with my girlfriend by myself and not in an apartment with two more people,” it pushed us to enable them to do this. Once you enable one thing, change begins to stack up, each change building on the last. You address new concepts, like explaining to people that they need to contribute to their cost of living, the meaning and value of money, and why we need to work. We invested the same amount of time developing services as we invested in developing the capacity of our people to actually ask for more: to complain, to demand, and to criticize what we’re doing. From this criticism and these demands, we learn that we can do things differently, better. It was very important to us to be aware of reality, but to challenge it. Many people were either not satisfied or they shouldn’t have been satisfied, but they did not have the context or experience to recognize that they should push for more than the status quo. As soon as we started taking people out of institutions, we started developing a self advocacy platform. With time, the self advocates we worked with formed an independent NGO, separate from our organization. This independence gives them a lot of power, which is quite a rare case in Europe because, usually, the self advocacy groups are part of a parent organization where they have very limited opportunities to influence reform. Self advocates inform our world views and point out things that we should improve, in addition to empowering the people who attend their self advocacy meetings to recognize injustice and act when they see that action must be taken. The majority of the people we support have no friends when we meet them, no known relatives, and absolutely no one who would actually stand up for their interests. By creating capacity within self-advocacy groups, they begin to establish all of these things. Self advocates make sure that we, as a service provider, don’t put the interests of our service before the interests of the people we support. There is a constant danger of things looking right but not being right. There is a danger of sliding back into something, especially since we function within a political system which doesn’t support us working in a person-centered way. When people who have always had the good fortune to live in the community have an opportunity to spend time with the people we support—to grow with them, to develop relationships with them—there will be no more need for institutions because people will not want to give up these valuable relationships. |
