It is hard to understand why, in 2012, there is still a debate about whether institutions are good or bad for people with disabilities. Why is it so easy to ignore and dismiss the experiences of the thousands of people who are still locked away in these institutions? Why are people with disabilities invisible to so many governments?

In many institutions in Europe—especially in Central and Eastern Europe—the unwilling residents are dehumanized. This is devastating for any person. Most of us have the freedom to come and go from our homes as we please. In institutions, residents who are considered difficult are tied up. Others are sent to solitary confinement, sometimes for days on end. The desperation and hopelessness faced by these men, women, and children are absolutely mind numbing.

The European Union and its Member States have an obligation to ensure that European taxpayer money is invested in a manner that respects human rights and fundamental freedoms. These are among the basic values upon which the EU was founded.

Structural Funds investments in institutions are particularly disturbing considering that the EU has ratified the United Nations Convention on the Rights of People with Disabilities (CRPD). The CRPD is legally binding on States Parties and applies civil, cultural, economic, political, and social rights to people with disabilities. In particular, Article 19 of the CRPD affirms the right of all people with disabilities to live in the community.

In disbursing Structural Funds, the EU is a donor and thus has a responsibility to prohibit investment in projects that violate its values, not to mention its laws. Member States are re-granters of those funds, and they must also be held accountable for investments in their countries.

Our report, The European Union and Community Living, features legal analysis from Queen’s Counsel Richard Gordon on why the use of Structural Funds to perpetuate institutionalization is contrary to the CRPD, and therefore also contrary to EU law. The CRPD recognizes that it is society that disables people by designing everything, in the broadest sense, to meet the needs of the majority who are not disabled. It acknowledges that society can do a great deal to reduce, and ultimately remove, most if not all disabling barriers, and that doing so is society’s responsibility rather than that of the person with a disability. While people have physical, sensory, intellectual, or psychological differences that may cause functional limitations, these need not lead to disability unless society fails to account for them and does not find ways to include all people, regardless of their individual differences.

The time is now for the European Commission and its Member States to take responsibility for ensuring that Structural Funds investments are no longer used to perpetuate the social exclusion of any European citizen.

Although the original motivation for relegating people with disabilities to institutions may have been altruistic, institutions have become an end in themselves, fiercely protecting their existence and resisting any change. The real evil of institutions is the denial of basic human rights. In the 1970s, Burton Blatt, a renowned advocate for people with intellectual disabilities, said that “if there is hope in what we have learned in our examination of institutionalization, it is not any improvement of institutional life—imprisonment and segregation can be made more comfortable, but they can never be made into freedom and participation.” Denying the average citizen freedom and participation in society would be a scandal of the first degree, but the “us and them” mentality makes it acceptable to do it to people with disabilities.

How does this sound: you get woken up at a certain time every morning, regardless of what day of the week it is, and regardless of how tired or unwell you might be. You get some clothes from a common locker that is always locked except at dressing time; it doesn’t matter if they don’t fit. You get herded to a cafeteria where you get what someone else has decided you’ll have for breakfast. Then you spend the rest of the day sitting around in a day room watching a program on TV that someone else has decided you’ll watch. The monotony might be broken by a shower—but not today, it’s not shower day. Then back to the cafeteria for lunch en masse, followed by a herding back to the day room for an afternoon of more mind numbing nothingness. And if you complain about that schedule, you are likely to be punished—perhaps a hair cut as punishment? Or wearing pajamas all day as punishment? Or getting locked up in solitary confinement? No problem, someone else will decide that. So, how does that sound? Like living hell? I can assure you that it is.

The CRPD is the first international human rights treaty to expressly recognize the right of all people with disabilities to live and participate in the community as equal citizens. By ratifying the CRPD, governments have made a commitment to ensuring that people with disabilities can live, and participate fully, in their communities. Article 19 requires States to take appropriate measures to facilitate “full inclusion and participation in the community” of persons with disabilities. Irrespective of the quality of care in institutions, the practice of isolating and segregating people with disabilities in long-stay institutions is in itself a violation of their human rights under Article 19. The CRPD, and Article 19 in particular, blasts the “us and them” mentality out of existence. There is no “us and them,” there is only “us” and we are all equal.

It is in the spirit of advocating for the implementation of Article 19 that the Open Society Foundations have prepared a guide and a checklist so that advocates everywhere can push for concrete and prompt action to introduce the necessary reforms so that all people can realize their right to live in the community. It does so by providing a detailed analysis of the scope and purpose of Article 19, and by setting out a range of steps governments will need to take in order to comply with the CRPD. We see these materials as working documents and we encourage you to send feedback to MHI@osi.hu. Let’s make ratification into real action!

December 3 is the International Day of Persons with Disabilities–a day that marks the pursuit of full participation and inclusion of persons with disabilities in society. This post is part of a blog series that reflects on our work to advance the rights of persons with disabilities around the world.

It is astounding that in this day and age, families in Hungary still can’t get the support they need to keep their disabled family members at home with them. Families face the Hobson’s choice of institutionalizing their loved ones or poverty—after all, someone needs to stay at home and provide care since there are so few community-based support systems.

In the film, Lazslo Bass, a sociologist at ELTE University in Budapest, talks about asking families of people who have intellectual disabilities about their biggest challenges. He says, “It is shocking that the first on the list is poverty.” Dr. Eszter Markus, a lecturer at the ELTE University, Special Education Department, speaks of the total lack of support and hopelessness families face: “They cannot find day care or kindergarten, later they cannot find schools or any other type of day program. After a while, families are forced to place their children or adult in an institution.”

It is clear that the Hungarian government has no intention of changing the status quo. This fact, while depressing beyond belief, is no longer a surprise.

A former Member of Parliament, who requested anonymity, described the situation in the film:

It is in the interest of the village to have as many state jobs as possible, and large institutions provide employment to many people. It is in the mayor's interest not to mess with these jobs and often these mayors sit in the Parliament...The lobby against deinstitutionalization is very clear in Parliament where any initiative to promote change is dropped before it is ever presented for a vote. Municipal resistance is very real and very strong…In such cases, the Parliament tends to place the subsistence of locals above the interests of the intellectually disabled. There was never a difference of opinion between political parties on this issue, there was always a very real unspoken consensus on the matter.

So the real reason that community-based services are not being developed nationwide and institutions are not being phased out in Hungary is politics as usual. The status quo is so rock solid that it does not even fluctuate with partisan differences; everyone just agrees. That is highly unusual on any issue in government.

The problem with the consensus here is that it has an exorbitant human cost. People who have been institutionalized are very often deeply traumatized by the experience. There is so much evidence that institutionalization kills the hopes and dreams of its survivors. This is very aptly described by former residents with first hand experience. One person in The Invisible describes his experience:

They sedate you, they shove injections in your behind and then you sleep from it. And later you will be angry, you'll beat and hit yourself… Sanyi put me in the cage bed and that's it. Nothing. That's it. He put me in the cage bed, and that's it. And after they beat me. Here, on my forehead and here, and on my nose and everywhere. They hit me in the nose, they hit me everywhere they could. They punched me in the stomach and stuff. And I was very skinny. They didn't give me food.

It is horrifying to realize that in spite of very clear claims of grave physical and emotional abuse and neglect in the institutions—with live survivors able to testify about it—there will be no justice in this case, nor in any of the other thousands of cases. Those who committed the torture will not be punished, the director of the institution will not be held to account. This would never be the case if the survivors were not intellectual disabled. But because they are “the invisible,” it is acceptable for them to be so often the victims of unspeakable, unpunished crimes. As in many countries, in Hungary the label of “intellectual disability” comes complete with a “second class citizen” status.

What would it take to change all of this? As the narration at the end of The Invisible points out, this is not rocket science:

Twenty years after the change of regime, thirteen years after the decision to deinstitutionalize and seven years after joining the European Union, the time has come to provide a new answer to the question of where the place is for people with intellectual disabilities in our society. Today, we see them as helpless children and spend millions to segregate them in an inhumane institutional system. However, if the opportunity presents itself they could be our equals as neighbors and colleagues and they could be free citizens with a voice in decision-making.

It’s as simple as that.

While it’s great that finally the international media is paying some attention to people with mental disabilities, it is a shame that coverage is almost always sensationalistic and further dehumanizes people who are already relegated to the fringes of society.

The stigmatization of people with mental disabilities runs very deep, and it is very difficult for them to shed it. Sensationalist media coverage does everybody a disservice because it reinforces the message that disabled people are hopeless, pathetic burdens to society and that if only they received more charitable assistance, perhaps society could take a breath and forget about them—again—at least until the next scandalous story breaks.

A few years ago in Croatia, a number of people with intellectual disabilities living in an institution died of food poisoning. The media published scandalous stories about the deaths. Though the deaths were never investigated, and no criminal charges were ever brought, the government’s knee jerk reaction to making the scandal disappear was to pour money into renovating the institution’s kitchen. This move set back the progress that had been made to reform the social welfare system and move people out of institutions. Instead of investing in the real solution—community-based housing and social support services—the government chose to continue segregating people with intellectual disabilities in a large institution, but this time with a fancy kitchen and a new paint job.

Similarly, the CNN program devoted significant coverage to Mathari Hospital, Kenya’s only psychiatric facility. CNN filmed people drugged into oblivion, shuffling about the place with nothing to do and no way out. One could not help but notice the absolutely appalling physical conditions and the overwhelming, oppressive atmosphere of hopelessness. An interview with the Minister of Medical Services revealed that “there is no money” to improve the hospital. The message was clear: let’s pour as much cash as possible into renovating and equipping Mathari so that it isn’t so hideously scary looking and sweep the real solution under the carpet.

Investing in Mathari (except in things that are urgently required to prevent injury or loss of life) is the worst possible thing that could happen for people with mental disabilities in Kenya. There is a great advantage in developing community-based services in Kenya: there are no institutions other than Mathari, so there is no system to dismantle. Investment in bricks and mortar to perpetuate the segregation of people in Mathari would be an enormous mistake and a very poor investment. Pouring money into Mathari can, of course, make it more comfortable. But it can never make in into a place of freedom and participation.

Only a fraction of the people in Kenya in need of support services end up in Mathari, thankfully. But most of the rest are isolated at home without the support they need. Given that there is vibrant civil society engagement in the mental health field in Kenya, it is disappointing that CNN’s program focused on touring with one NGO representative, going from village to village, peering into the dark rooms where disabled people spend their lives, then moving onto the next to do the same. Why just the misery and not the real solutions? Would the story be less scintillating if viewers know that there are real solutions? Would it force viewers to think about their own prejudices about people with disabilities? Would it be too boring to find out that there are real solutions being implemented right now in Kenya, and these solutions are actually cost-effective?

A number of organizations are providing support to families in Kenya so that people with mental disabilities can live with dignity in the communities to which they have always belonged—as equal citizens—not “locked up and forgotten.” There are NGOs supporting self advocacy and mental health service user groups to grow into strong advocacy movements, and one organization has obtained access to education and other services for people with autism. There are NGOs helping vulnerable communities to help themselves with poverty alleviation programs.

The real solutions are already happening in Kenya. But the work is far from over. There is an urgent need for real political will to invest in these efforts so that support and services are available to all people who need them. It’s that simple. But we cannot be distracted by the horror stories or be led to believe that renovating buildings and buying equipment are the solutions. The media can play a critical role in helping societies reform the way we see people with mental  disabilities. I hope that they take up this challenge.

This week, a broad group of local and international civil society organizations representing people with disabilities criticized the government for failing to respect the need to have a real debate about the terms for EU Structural Funds tenders. The government planned a meeting to discuss the tenders, but gave groups less than 24 hours notice of the meeting—making it impossible for organizations to prepare for the meeting, never mind to attend it. By curtailing any substantive debate, the government failed to fulfill its obligations to utilize European taxpayer money in the most responsible way (a translated letter from the groups to the Ministry of National Resources and the National Development Agency, which are responsible for managing the expenditure of EU Structural Funds, is available online). The fact that Hungarian law (Act CXXXI of 2010) requires social dialogue during the legislative process did not seem to matter.

The problem here is not only that that the Hungarian government still does not take consultation with civil society seriously—it is also that it intends to spend Structural Funds on the construction of new residential institutions for people with disabilities rather than invest that finding in the development of community-based services. We are talking about enormous amounts of money: Hungary is to spend 13 billion HUF (about 47 million Euros) for this purpose between 2011 and 2013. That kind of money could be used to develop the alternative infrastructure nationwide, finally ending the archaic practice of locking people with disabilities up in large, closed institutions and throwing away they keys.

Given that Hungary was among the first countries in the world to sign and ratify the UN Convention on the Rights of People with Disabilities (CRPD) that clearly sets out the right to live in the community with appropriate support, the government’s plan to build new institutions is baffling at best. At worst, its insistence on maintaining the status quo by bypassing social debate on critical issues will lead to the wrong  decisions, and will end in an enormous waste of resources.

We already know that the Hungarian government spent 1 million Euros on renovating large institutions between 2008 to 2010, and not a single penny on deinstitutionalization. Given that Hungary is in a leading position in the EU for the first half of this year, it should show real leadership. It could do that by elaborating regulations on the use of Structural Funds that respect the fundamental right of people with disabilities to live in the community by investing the resources in alternative services that respect their human rights. The Bulgarian government recently adopted an action plan for deinstitutionalization that uses Structural Funds to develop the alternative infrastructure, showing that the right thing can be done if there is political will.

The bright spot in this story is that civil society groups are standing together on this and will act as the conscience that the Hungarian government seems to lack.

And then something amazing happened. Something so amazing that in the 15 years I have been doing this work, I have never heard of such a thing. The Minister of Labor, Health and Social Affairs, Andrew Urushadze, approached the U.S. Ambassador to Georgia, John Bass, and said “No.”

Urushadze explained that he wanted the $8 million to be redirected to support the development of services in the community for children, with funding for infrastructure to be invested in small group homes. USAID agreed. What could have been an enormous mistake and a terrible use of resources is now a great opportunity to finally end the segregation of children in institutions and reunite them with the communities to which they have always belonged.

The message here is simple but very significant: where there is real political will and commitment to implementing reform, government leaders can talk to donors and donors will listen and respond. Even major bilateral donors like USAID can be persuaded to do the right thing. And this is fundamentally important—the massive amounts of funding that such donors have to invest can have enormous impact on people’s lives. Unfortunately, that impact is often negative, like it would have been if Georgia’s archaic institutional system was renovated.

What happened in Georgia gives me hope that foreign assistance can be responsive to real needs in a country, and that money doesn’t have to go to the wrong projects. The best case scenario would be for USAID and other donors to implement strict policies stating that their funding cannot be used to perpetuate the segregation of people in institutions. If they don’t do this, funding will continue to be invested in an ad hoc manner, with much of it going the wrong way. And then we can only hope that governments have real political will and commitment to do the right thing.  Unfortunately, many do not, and donors must be accountable for the investment of their funds. Once millions of dollars have been invested in the wrong project, it is very difficult to later argue that it needs to be dismantled.

Bravo Minister Urushadze for taking the time to do the right thing for the children of Georgia!

An investigation into institutions in Bulgaria by Matthew Brunwasser for the New York Times has uncovered a horrifying, bone-chilling truth: 238 children with intellectual disabilities have died while in institutions. The vast majority of these deaths are a result of neglect and were completely preventable. How can this be happening in the European Union, which was founded on the fundamental values of respect for human dignity and freedom? Easily. Tragically, but easily.

The public should have gotten the message by now that the institutional “care” system for people with intellectual disabilities and mental health problems is destroying thousands of human lives. The widespread neglect and abuse in these institutions routinely go unpunished. The people we lock away become invisible. And now the dirty secret is out: children are dying because of neglect, and the people responsible are not being punished. Not just in Bulgaria, but all over Central and Eastern Europe. Virtually no one has ever been prosecuted for a crime committed in an institution against disabled children or adults.

But the tide may be changing.

Brunwasser’s article chronicles an innovative strategy: the Bulgarian Helsinki Committee is working with the state prosecutor’s office to investigate deaths inside institutions. The committee’s lawyers are representing children who suffered abuse from their "caregivers," but were lucky enough to survive their institutionalization. It will be interesting to see what happens, whether justice will be served and the perpetrators held accountable. What happens in these cases will send an important message to the world: Does society care about the children it has locked away, or will they continue to be forgotten?

While we wait for the legal system to do its thing, the European Union is providing financing to the Bulgarian government to improve the system and close all of the institutions for children with mental disabilities within three years. There is €20 million to build "facilities" and €23 million to train caregivers.

That is an enormous sum of money. And there is a right way to use it: All of the children who are institutionalized should be placed in the community in families or in family-substitute settings and provided with the support they need—not just to survive if they’re lucky—but to thrive, which is their human right.

Together with the donor, the European Union, we must hold the Bulgarian government accountable for the results. It would be a tragedy if they build a bunch of "facilities" that replicate the big, ugly institutions, just on a smaller scale and in newer buildings. Children need loving caregivers—these aren’t made of bricks and mortar, they are people, just like the 238 children who died. They were people too.

After decades of exposés, it has become rather obvious to most people that warehousing human beings in archaic, decrepit institutions—still prolific across Central and Eastern Europe—is a grave violation of their human rights. So why do government leaders continue to ignore the plight of thousands of children and adults who have intellectual or mental health disabilities? Why do these institutions still exist?

In “Humans Null and Void,” the latest heartwrenching exposé by investigative journalist Yana Buhrer Tavanier, we get a simple, yet bleak, answer: it is because the people wasting away in these institutions don’t really count. They are null and void as far as governments are concerned, and the ugly truth is that they deteriorate in institutions from the mind-numbing boredom, the loneliness, and the lack of love.

As Yana so powerfully illustrates, the Macedonian government is failing its citizens. Hundreds of people are locked away in institutions across the country. Many people spend their entire lives in institutions because Macedonia offers no support to families and communities.

These are places, as Yana writes, “where the holes in the corroded walls are in fact dug by human fingers”; where a resident’s “daily route [is] between the filthy bedroom, the filthy bathroom, the filthy canteen and the filthy, empty day room; the stench being their constant companion, following them everywhere.”

Watch the video. Read the website. But how many more horror stories do we need to hear before governments take action?

It is the small things, the everyday details that most of us take for granted about how we live each day—what we choose to do or not do, what to eat, who to  meet with, what decisions to make. These everyday choices are not available to people who live in institutions, and it is truly life changing to be able to make them—especially when you finally get the opportunity to truly exist as an adult, having spent years, often decades, behind the gates of a total institution.

In the 15 years that I’ve been working to get people out of institutions, or preventing them from ever having to enter them, I’ve become more ambitious. If we can get 10 people out, why not try to close a whole institution and improve hundreds of lives, changing the entire system in the process?

This goal was my motivation for negotiating with the government in Belgrade in 2005, negotiations that led to the signing of a Memorandum of Understanding with the Ministry of Labor, Employment and Social Policy in 2006. It was a grand plan: we were to partner with the Ministry in establishing community-based housing throughout Serbia for people with mental disabilities. The Ministry committed to financing the purchase of 130 homes across the country for this purpose. The Open Society Institute would cover the operating costs until the Ministry developed the financing mechanisms to take over. About 650 people would have been freed and would have gotten the chance to begin new lives.

Two of the four people recently released from an institution in Novi Sad, Serbia. © Mira Lazor

It was a plan that failed. Politics got in the way. There were election campaigns to finance, and the money for the 130 homes disappeared. It was an extraordinary disappointment. We could have changed the landscape in the whole country, but it fell flat. In the light of what we hoped to achieve, getting four people out of an institution seemed to be less important than the dream of freeing hundreds.

I have been reminded, once again, how incredibly important every person is. How everyone is an individual with his or her own hopes and dreams. My partners in Novi Sad wrote to me yesterday announcing: "A lot of great things have been happening here in Novi Sad in the last few days. Dusica, Mirko, Dragica, and Joca left [the institution] and moved into their new home in Novi Sad." There were photos to go along with the email. Photos of four people with new lives. Photos of "minus 4" people in institutions. Now that is truly something to celebrate.

Education mural for people with intellectual disabilities, Kiambu, Kenya. Photo by Judith Klein/Open Society Institute.

As the Open Society Mental Health Initiative expands its work to Kenya this year, I knew I would have  much to learn about context, having spent the last 15 years focused on Central and Eastern Europe and the former Soviet Union (CEE and fSU). But two things really struck me while I was meeting Kenyan organizations recently. The first is that while many things are relative, others seem to be universal. Sadly, prejudice and discrimination against people with mental disabilities is universal. The second thing that struck me is how much advocates in what we at OSI call “the traditional region” (the CEE and fSU countries where Soros foundations first formed) could and should learn from advocates in Africa.

Too often, the “training” and the “teaching” and the “instruction” generally seem to come from Europe or the developed West, directed at Africa.  In terms of real grassroots advocacy, which is essential to producing positive change in my field, I can say that this is a big mistake. Learning should always be a two-way process, and there are many cases in which lessons from Kenya are not only highly relevant, but would be very important for European advocates.

The best example I have of this is the level of parent advocacy and self advocacy for people with intellectual disabilities in Kenya, versus the level of such advocacy in Central and Eastern Europe and the former Soviet Union. For parents’ organizations of people with intellectual disabilities, one of the biggest taboo subjects is sexual education. Throughout CEE and the fSU, many (if not most) parent organizations completely avoid the subject and carry on as if their children (who are adults but commonly called “children” their entire lives) are not sexual beings because they have intellectual disabilities. This is clearly not the case, and avoiding the issue actually puts people with intellectual disabilities at great risk—it is not OK to keep adults in the dark about what is safe and what isn’t, and about what to do if they are being abused.

In Kenya, one parents’ organization has, for the past few years, been doing impressive and excellent work in sexual education and awareness raising for both people with intellectual disabilities and their parents. This is both very brave and highly controversial in Kenya because of the power of religious leaders who uphold the “abstain and be faithful” philosophy. However, the organization proceeds with the work because while clearly sexual education is very important for all self advocates, in Kenya it is critical because of the prevalence of HIV and the vulnerability of people with intellectual disabilities. In addition to organizing numerous training events on this topic, the organization also produced progressive materials on sexual education and trained self advocates on the issues.

When I met with self advocates in Kiambu close to Nairobi, I was really impressed to hear that each person is aware of his/her HIV status and knows what to do and what not to do with regard to sexual matters. These issues were openly discussed, which is key to ensuring that people with intellectual disabilities can be as self determined as they can, and make as many of their own choices as they can—especially such personal choices.

Having been inspired by what I saw in Kenya, I hope to spread that inspiration among parent groups in my “traditional region”—where people have been far too traditional in the way they treat adults with intellectual disabilities—so that advocates can rise to the level of their Kenyan counterparts.