It was as if I came from Mars.
Sixteen years ago I visited an institution in Croatia and tried to talk with the management about allowing people with disabilities to live their lives in the community, instead of behind these walls.
They looked at me with bewilderment. The chief nurse pulled me aside in the corridor, asking with a suspicious whisper, “but what do you really want from us? What do you really intend to do here?”
What I wanted then is the same thing I want now: to help liberate people from long-stay institutions and to connect them with decent services in the community. They must be free to live as the equal citizens they are, and to live the lives they want.
Since that day in Croatia, some things have moved forward. Words like ‘deinstitutionalization’ and ‘social inclusion’ have now become part of common parlance almost everywhere, and have changed the social dialogue about disability. Many Governments have acknowledged the fact that it is both a grave human rights abuse and immoral to keep people locked away from the rest of society.
After nearly two decades advocating for a real shift from the institutional system to a community-based one, we can look to some important victories: the government of Moldova has made a serious commitment to this shift, including reallocating the financing for institutions to community-based services; the government of the Federation of Bosnia and Herzegovina intends to develop community services and close its institutions; the government of Indonesia has declared its intent to deinstitutionalize children and is on the way to doing so.
And after sixteen years of advocacy, the Croatian government is listening. It has declared deinstitutionalization a priority in its 2013 budget – no small feat in these times of economic crisis. The Ministry plans to develop community-based services so that it can begin the closure of a large and horrendous institution for people with intellectual disabilities.
One key lesson from this work is that there is a right time for everything.
We build foundations for change, develop best practices, and fight for “lost causes” so that we have a voice when health and social welfare authorities are willing to have a real dialogue. Ultimately, the political will to end institutionalization cannot be imposed from outside; it has to come from within government.
With that understanding, we recognize that much change is needed. But as we honor this year’s Day of People with Disabilities, we also recognize we have come a long way. The most important message is that all people want and must have equal opportunities. As our Croatian partner, the Association for Self Advocacy, so simply and beautifully put it:
I want to get married
I want to live in the community
I want to make decisions for myself
I want to have a job
I want to vote
I want what you want.