Hungary’s Invisible People

This new documentary, The Invisible, by the Hungarian Civil Liberties Union offers a clear and moving message of why societies should not lock up people with intellectual disabilities. As the film notes, we still have hundreds of institutions in so-called civilized Europe in 2011 because these places are very convenient. Convenient, that is, except for the people who are forced to live in the institutions.

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.

9 Comments

This is indeed a shocking scenario.

With the emergence of nuclear families, the mother or sibling is 'stuck' with care-giving , a crippling condition where no better options exist.

Some have taken this forward by building small service models around this challenge , in the process, addressing their need for income and sharing their skills .Organisations like yours may be the ideal drivers for such change.

Should you wish for some pointers in this direction ,we can chat.

Thank you for your sharing,Judith.

Shammaa

Thank you for this blog, Judy. I was struck by the comment attributed to an anonymous former member of parliament. He or she talks about the interest of the village in state jobs and the role this plays politically in opposition to deinstitutionalization. We have a parallel situation in the U.S. Here, it mainly involves state prisons, which are almost always located in rural areas. They are a major factor in employment in many communities. This makes state legislators from rural areas a strong lobby against reductions in imprisonment. The problem is exacerbated by the fact that the census counts prisoners where they are confined. This adds to state funding for rural communities and, though the prisoners can’t vote, to the apportionment of seats in the state legislature.

Right now, because of the fiscal crisis in the states, there is a serious prospect of reducing incarceration. One of the things standing in the way is the lobby made up of those who benefit from the high rate of imprisonment. State legislators representing rural districts are the most powerful part of that lobby.

The comments by the former member of parliament suggest to me that there are similar issues in a number of places.

Aryeh Neier
President, Open Society Foundations

To Hungary with love... This piece has lit a fire under me and I thank you. Status-quo and politics is no excuse for such a strong people. Out of sight and out of mind...and heart. Except the hearts of those who love these children or of those who see them and think of their own children. So much good work is being done by organizations like MHI and attitudes (manipulated by the political machine or echoes of a superstitious past) undermine those efforts. The progress of Hungary and certainly the humanity of the communities in which these families live depend on social justice and the understanding of interdependence. Not advocating for these children retards the evolution of each and every one of us. Yes. How can we let this continue? To allow this to cycle to persist, to tear apart families, systematically abuse children and stigmatize communities in the eyes of the ever watching world (in your own eyes) is not acceptable. My hope is for the people of Budapest to stand up and say, not this and not here. Be an example to the rest of your country. If you know someone with a child at risk, offer help. Help with chores, food or daycare. Support daycare that includes children with disabilities. Organize a small support group or think tank. Publicly support organizations that want to help you overcome this stigma. Let these children and your community know you have evolved past tolerating this kind of systematic (and archaic) abuse of people.

I support theidea Susan propose since while awaiting for politicians or authorities to act, people could be suffering terrible and not reparable damage.
People´s dignity should be our motor, solidarity among us for the wellbeing of all is needed.
I believe that people could get organised and assit each other or make a neighborhood centre assisted by volunteers, taking shifts, training and giving society and all of its members a friendly, caring hand.

Hi, I´was not able to get the video with subtitles The cc button does not seem to work.

I am very concerned about a person in Budapest, with mental health issues because he is alone and I don´t know who to refer him to. Could you help me?

The documentary provides an excellent contrast between the pro-institution faction (characterised by its suffocating and perpetual hopelessness and its ability to satisfy certain political and economic self-interests) and the more progressive community based approach, in which each individual has a greater opportunity to reach his/her potential and live a meaningful life.

I remember visiting Budapest in the 1970’s and visiting an insitutionalised relative there. Although I was only a teenager at the time, I was terrified. It was much worse than my ‘One Flew Over the Cuckoo’s Nest’ perception of what such an institution might be like. It seems that nothing has changed in more than three decades.

For most families confronted with the reality of a family member with intellectual disability, the choice is between poverty or institutionalization (and the heartbreaking guilt that such an option entails), with no affordable day care or home support available.

In order to elicit change, efforts will have to be made to convince Hungarian society that there are real alternatives and this documentary helps greatly to shed light on those alternatives. Much more ‘light’ needs to be shed of course. Efforts will have to be made, not only to convince politicians that it is in the long term interest of their constituents for them to do so, but that their own personal political interests will benefit as a result, because this ‘light’ is not going to go away.

Daniel Berze

Its great that OSI throws new light upon the situation of people with mental disabilities in Hungary. As a mental health professional working in a recovery-based community service for people with living mental problems, I meet a lot of patients who try to hide themselves from the inhuman institutional care that often provides inhuman control instead of support. We struggle for changes from 1995 in Hungary, but still did not break through. Most of the health and social professionals still have a paternalistic attitude that is trained at the universities as well. Even professionals with great enthausiasm beleive in models that put users in a dependent situation, -dependency upon professionals and institutions. Education of mental health professionals is highly infuenced by the ’BIG PHARMA’ which still works with the medical paradigm and supports medicalization. Marketing is frequent on these trainings and conferences. Professionals choose postgrad. trainings which are paid for them by the companies instead of community psychiatric trainings which costs more for them.
The resistence of Hungary as a country against community based systems is highly based on the ’old, socialist-like’ attitudes of professionals. It is not enought to close the little ’Gulags’, but we have to change our minds also. Education has a key role in these changes, also the better control of the ’BIG PHARMA’ in mental health is urgent and important.

Judit Harangozó

Awakenings Foundation
www.ebredesek.hu

it is an pity the subtitling does not work, it seemed to be some pupils suffers from autism they can helped so much betterive lots of contacts also in romania, they developed an easy concept and cheap for autism

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