Community Not Confinement

They are locked away for years without having committed any crime.

They cannot choose when to wake up and go to bed, what to eat, and with whom they share their lives. They cannot choose when to visit family and friends, whether to get an education, or to hold a job. Without any power or recourse, they face abuse and neglect.

This is life for more than a million people with disabilities across Europe. They are segregated from their communities and confined to long-stay residential facilities known as institutions. Institutions control all aspects of residents’ daily lives.

They are places of confinement.

The United Nations’ Convention on the Rights of Persons with Disabilities ensures the rights of people with disabilities to live in their communities with choices equal to everyone else, and to receive services according to their needs. When the European Union ratified this convention, it became law.

But some EU states in Central and Eastern Europe are spending hundreds of millions of euros intended for development and investments to make states more equal to each other—called Structural Funds—on building or renovating institutions for people with disabilities. In effect, they are spending public money illegally and violating human rights.

The Open Society Foundations Mental Health Initiative has presented a petition to the European Parliament supported by a range of disability rights and self-advocacy groups. We called on the Petitions Committee to press EU decision makers to correct the Structural Funds process, make it transparent, and ensure public money doesn’t support institutions and deprive people of their basic rights.

During our presentation to the committee on March 20, we showed the above short video, Community not Confinement, by one of our grantees, filmmaker Tomislav Zaja. In this video you will hear directly from people who know all about institutions. Some are former residents themselves. They can tell you better than I what it means to be able to exercise choice in their own lives, and to live freely in their communities. There are community-based services that meet the needs of people with disabilities better than institutions, and they don’t have to cost more.

I can tell you this—in my 18 years with the Open Society Foundations supporting the development and the replication of sustainable alternative community-based models, I have been to these institutions in every country of Central and Eastern Europe. Every time I visit, I am destroyed, watching people’s humanity fade as they languish in these places for decades. They become shadows of themselves. For most residents there is no way out, except death. Many long-stay institutions even have their own graveyards, recognizing the appalling but real fact that many of them will live out the ends of their lives there.

Our presentation produced promising results. The committee recognized that this issue is of such importance that they have kept our petition active. They have requested that the European Commission provide further information how Structural Funds are spent, and they have asked other committees including Budget Control and Regional Development—which control how EU money is invested—to advise them.

As the parliament debates the next round of Structural Funds throughout this year, the EU has an opportunity to change course and ensure everyone’s rights are protected. We hope they will seize it.