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  • Centro de Investigaciones en Derechos Humanos 5:31 pm on June 5, 2011 Permalink | Reply
    Tags: Bulgaria, , , , , , , , , , , , social inclusion, , UK   

    Institutions cannot improve 

    Alphia Abdikeeva, CIDH Pro Igual

    A piece of news caught my attention recently: conditions in Bulgarian institutions for children with disabilities have improved following a damning report on human rights abuses there. Well, it´s good to know. But I cannot shake off a nagging feeling: is it good news or bad news that the institutions have “improved”, if they still exist?

    The institution, by its nature, creates two classes of beings: one in the position of power, and the other powerless. And we all know that power corrupts, especially such absolute and unchecked power that the staff of the residential institution usually have over vulnerable people in their “care.”

    Last year, the report by the Bulgarian Helsinki Committee revealed that hundreds of deaths of children with mental and physical disabilities took place due to appalling lack of care, staff negligence and even physical abuse in the state-run “care homes”. Now, we are told, somebody is actually giving these children food and checks their medications. Deaths in the care homes will now be more thoroughly investigated and surprise official inspections are supposed to prevent abusive practices. So we are told.

    But we have also been told by the Bulgarian government that all residential institutions for people with mental and other disabilities would be closed down by 2014 and replaced by community-based supports. So, why hasn´t the government closed the “care homes” as soon as their horrendous practices came to light? Why (and how) exactly have their conditions improved? Have the authorities put material resources – surely not unlimited – into the institutions to “improve” them? If so, what of the pledge to close down the institutions?

    And just before someone brings up the “our country is poor” argument for not switching to community-based services, it is utterly disingenuous to claim that the level of economic development of a country has anything to do with the treatment in the institution. (Not to mention that community-based services may actually be less costly than institutions.) The most recent undercover media investigation in a UK care home has convincingly demonstrated that even in that prosperous country, with centuries of humanist values, the situation of institutionalized people is not that different from a situation in an impoverished or “transition” country. It is the very nature of the institution that makes abuse not only possible but almost inevitable.

    So, rejoice not that the conditions in the Bulgarian institutions have “improved”, because just about anything would qualify as an “improvement” in a place where children were starved, abused and neglected to death. Rather, keep asking — when will the last institution be closed down, in Bulgaria and elsewhere? Institutions simply cannot “improve”!

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  • Centro de Investigaciones en Derechos Humanos 9:04 am on October 1, 2010 Permalink | Reply
    Tags: , , , , , , , , , , social inclusion,   

    And some more horror stories 

    By Alphia Abdikeeva, CIDH ProIgual

    Upon recently reading the piece How Many More Horror Stories Do We Need to Hear and watching the clip that accompanies it, I felt big, walnut-sized goosebumps on the skin. A good Spanish word “escalofriante” describes well the emotion.

    The article was written by Judith Klein, a long-time colleague and friend of mine. She directs the Mental Health Initiative (MHI) program at Open Society Institute, the program that for years has been advocating for deinstitutionalization of people with mental disabilities and providing community-based services that allow their integration in society.

    I personally learned about the issue of rampant institutionalization and abuse of human rights of people with mental disabilities just a few years ago, when the report on cagebeds by Mental Disability Advocacy Center (MDAC) came out.

    At that time I honestly thought that following the damning MDAC publication things would change immediately, because it was a national embarrassment for each and every country involved. Since it was news to me and that was my human reaction, I really believed that everyone who just learned about the cagebeds for the first time would also react this way. Especially people in power — they tend to be cockiest about their country´s reputation.

    Apparently not. Apparently bureaucrats already know all about it, but continue maintaining and financing establishments where atrocities like cagebeds are possible. And so we continue hearing horror stories of institutional abuse of people with mental disabilities.

    There are many vulnerable groups out there: women; refugees; elderly; prison inmates; marginalized ethnic, religious or sexual minorities. Sometimes, when the proverbial  last straw breaks their back, so-to-say, they at least can collectively protest or riot to get attention to their plight and to negotiate improvements in their condition. But institutional inmates with mental disabilities do not even have this last resort.

    Unfortunately, my guess is there will be many, many more horror stories to come. But I think, no matter how disturbing, they should keep coming to light. Somebody has got to stir up public and bureaucratic feelings. So that if not out of elementary human compassion, then at least out of professional embarrassment — and possible sanctions — people in a position to do something about deinstitutionalization would act.

     
  • Centro de Investigaciones en Derechos Humanos 8:59 pm on July 11, 2010 Permalink | Reply
    Tags: , , , , , , , , , , , , social inclusion,   

    Saving on Roma health rights is bad economy 

    Alphia Abdikeeva, CIDH Pro Igual

    Analysis of various barriers for Roma access to health care in Southeast Europe suggests that money – for better or worse – is now rivaling discrimination, which traditionally was among the major deterrents.

    For better, because at least money is color-blind (or so we believe). This means that a paying person is guaranteed access to the best available health care regardless of his or her background, as long as there is money to pay for it. For worse, because money denotes dehumanization of healthcare: a poor person can be left without vitally important treatments. Incidentally, the majority of Roma may fall into this category.

    But paradoxes arise when some doctors or hospitals try to save money by refusing what seem to be expensive procedures for people who cannot pay, but then end up providing them much more expensive procedures for free, as a matter of emergency, since withholding necessary preventive treatments can and often leads to complications of all sorts.

    A few examples follow.

    • A pregnant Roma woman in Romania was refused a Cesarean in an overdue delivery (Caesareans are evidently expensive). But after her unborn baby died, and a host of complications occurred, her uterus had to be removed (which is a much more expensive procedure than the Cesarean). Given it was an emergency operation, it was free. That, on top of potential charges for doctors/the hospital if the patient decided to sue for negligence and/or malpractice. Where exactly was the saving here is difficult to see.
    • A Roma boy in Macedonia broke his arm but the doctor didn´t do a very good job with the cast. When the boy´s arm swelled and the family brought him back to the hospital, the doctor did not find time (an expensive commodity) for giving it a better look. The arm subsequently developed a gangrenous infection and had to be amputated, with the boy´s life endangered. Obviously, there were no  bills for the boy´s family, and as soon as the court´s decision is out in this highly publicized case, the doctor/hospital might have to loosen their purse strings to compensate the boy for the life-long disability caused. Again, it is hard to see any savings here.
    • In Macedonia, Romania, Serbia, and other countries in the region Roma are routinely denied tests capable to detect health problems early on and to prevent the development of serious illnesses. State-provided mammogram, ultrasound, and other tests and specialists are systematically “overbooked” whenever Roma patients need or request them. (By the way, the same services are available at any time, for a fee, as “private.”) But as a result of withholding preventive treatments, the state often has to provide more expensive emergency and rehabilitation procedures, naturally for free.

    The list can go on indefinitely, but the point is: saving on Roma health and health rights, shows to be bad economy.

     
  • Centro de Investigaciones en Derechos Humanos 9:48 am on June 16, 2010 Permalink | Reply
    Tags: , , , , , , , , , , social inclusion,   

    Cutting some budgets may be a good thing 

    Alphia Abdikeeva, CIDH Pro Igual

    Budget deficit and impending cuts, most commonly in public sector, are on the news every day. There is a lot of uncertainty about who will be affected and to what extent. But usually there is understanding that budget cuts are a bad thing. But I keep thinking about one human rights report I had a chance to edit last year, about the mental health care budget in Romania. That report made me think differently about certain budget cuts.

    The report was written by the Institute for Public Policy (IPP) and among other things it presented some figures about the costs of running institutions versus community-based services for people with disabilities. Contrary to popular beliefs, community-based services are not more expensive than institutions-based services. Actually, community-based services are sometimes several times cheaper (sic!) than institutional ones. And as to the outcomes, one need not be an expert to figure out that life in closed, remote institutions can turn even a healthy person into a wreck.

    Many people in Eastern Europe dread of a possibility to end up in some nursing home when they are old, and certainly would not choose to live there. People in Eastern Europe also often take pity on orphans or abandoned children who end up in institutions, again because people have a pretty good idea of what is happening inside. Life in institutions can be especially devastating for people with disabilities, especially mental or developmental, who do not even have that choice of where to be. The IPP report referred to dozens of unexplained deaths of patients in Romanian institutions.

    But what did strike me most was that  if the data on comparative costs were available to the government (and they surely were in case of Romania), how come the government did not immediately jump at an opportunity to save money by starting to switch to community-based services? Wouldn´t it be a rational thing to do? Even in a healthy economy, there are always areas that badly lack funding. Ways to redistribute funding from wasteful and inefficient projects to cost-efficient and necessary ones, seems to me, should always be on the government radar. Perhaps, there are some other concerns that I do not understand, like public dislike of the idea. But that surely cannot and should not trump rational cost-efficiency (not even mentioning humane) considerations. Or am I still missing something?

    In any event, there are now budget cuts on the agenda in Romania, Bulgaria, Hungary, and other countries badly affected by the current economic crisis. Perhaps, the governments — with a bit of help from NGOs — should seize on it as an opportunity in disguise for deinstitutionalization. Then, if done wisely, the budget cuts can actually turn out to be a good thing leading to the closure of expensive and ineffective institutions for people with disabilities and/or mental health problems and the shift towards community-based services and care.

     
  • Centro de Investigaciones en Derechos Humanos 7:10 pm on June 10, 2010 Permalink | Reply
    Tags: , , , , , , , , social inclusion,   

    Halfway through the Roma Decade: going anywhere? 

    Alphia Abdikeeva, CIDH Pro Igual

    An opinion piece on the debate site Has the Decade of Roma Inclusion made a difference for Roma in the communities? is highly critical of the absence of the tangible progress of the Roma Decade to date.

    To be fair, many Roma and non-Roma civil society organizations work hard on various issues of concern to Roma, and often achieve remarkable results. But as some rightly point out, these organizations worked before the Decade, definitely would have worked without the Decade, and most likely would continue working long after the Decade. Others, however, and specifically some of the big international names that were so enthusiastic prior to the Decade launch, do not seem quite as active as many would have expected. Of course, speeches are still being periodically made, and Roma-related and Decade-related conferences and events are being attended faithfully, but that spark seems to be gone. What is left is more like a lip-service than a heart-felt effort.

    EU is one such example. It seems, after the then Commission´s composition had changed, the Roma Decade lost both its protagonists and its drive. The EU Roma Strategy is still missing, despite persistent calls from a wide range of Roma organizations to adopt one. There are other big players, too, that have not been heard much from since the Decade.

    And it would be entirely inappropriate to try and bring economic crisis as an excuse for diminished activism. First, because it would just stress that Roma issues are so unimportant to them that anything else, by default, acquires higher priority. Second, because, if anything, at times of economic crises — and international organizations can bet their annual budgets on it — Roma are guaranteed to be affected more and more severely than anyone, and therefore there are more, not less, reasons to ensure the Decade´s proper implementation.

    It is no wonder that without continued international support and pressure only limited progress has been reported with the implementation of the Decade´s objectives in the participating countries, half-way through the Decade, as evidenced by the Decade Watch monitoring. And it is no wonder that Roma are becoming somewhat disappointed with the Decade´s achievements.

    Decade partners need to step up their involvement, if the Decade to lead somewhere. Surely, grass-roots NGOs must do their bit — nothing without the Roma. But as mentioned before, they have been doing their job anyway and did not need the Decade for that. But if other partners committed themselves to the Decade, they too should stick to the agreement and do their bit in good faith. Otherwise, why did they even bother getting involved?

     
  • Centro de Investigaciones en Derechos Humanos 6:04 am on May 23, 2010 Permalink | Reply
    Tags: , , , , , , , , , social inclusion,   

    Roma right to health – a distant prospect 

    Alphia Abdikeeva, CIDH Pro Igual

    Roma health status across Europe is consistently worse than that of the majority population or even of most other ethnic groups. There is limited official data on the matter, but even scarce information that is available supports this conclusion. Infant mortality rates for Roma children are up to 4 times higher that the national averages, and Roma life expectancy is up to 10 years less than for the majority. See, for instance, a UNDP vulnerability study, and more recent surveys are also available.

    Against this background it is perplexing why during health surveys so many Roma respondents estimate their health to be ´good´ or at minimum ´tolerable.´ The most logical explanation is that Roma in their majority may be simply not aware that health is more than not being terminally ill and that they have a very real, albeit unfulfilled, right to pretend to the highest attainable standard of health, with all it entails: equitable access to decent health care, including preventive care, and a host of patients´rights.

    But improving Roma health indicators will take more than easing their access to cheaper and more medication, which is one concern that Roma patients most commonly raise. Medication seems like an easy solution, ridding them from the hassle, expense and humiliation of having to see a doctor. Hassle, because many do not have necessary papers or insurance; expense, because with or without insurance there is still something left to pay, if not official participation then a bribe; and humiliation, because many experience hostile attitudes from the medical personnel for a sheer reason of being Roma.

    However, indicators such as high infant mortality and low life expectancy are not just about health, they are also about quality of life. Or, in case of many Roma, absence of any quality. These indicators suggest that prenatal healthcare is not adequate; that women´s health and rights are neglected; that children´s nutrition and safety are lacking. This brings about the whole issue of Roma living conditions: very often in slums, without access to clean water and sanitation, without accessible roads and very far from any health centers.

    Underlying those living conditions is poverty, rooted in centuries of discrimination and exclusion. Tackling Roma health necessarily requires overhauling extremely precarious infrastructure many Roma are living in. Until then, good health for many Roma will remain but a distant prospect.

     
  • Centro de Investigaciones en Derechos Humanos 6:29 am on May 11, 2010 Permalink | Reply
    Tags: , , , data, , , , , , , , , , privacy, , racial profiling, , social inclusion,   

    Eternal dilemmas of data collection 

    Alphia Abdikeeva, CIDH Pro Igual

    That the ethnic data is important has been said and written a lot. But in the end of the day, after another conference is finished, another publication´s ink dried off, and another set of recommendations is passed onto another set of key people, we all go home, and nothing changes. Privacy rights activists continue to call on states not to store our personal information. (Some) minority rights activists continue to appeal to disaggregate the official statistics so vulnerable groups become visible. And states continue to ignore either, still getting our emails, sms, and bank information, blatantly profiling undesirable, and still saying no ethnic data exist. Is there a solution?

    We, the people, we, the society, send conflicting messages to our states. We want this information, but we don´t want it collected. The states, on the other hand, behave very consistently. They collect the data they need, whether or not we like it, and they will always find a legal caveat to do it.

    Let´s face it: the states will never stop collecting our personal information. They need the data to protect us, to fight crime, and what not. But it may be very expensive to ask everyone´s permission. So, they don´t. And since formally the states don´t collect ethnic information, they don´t use it for things that might benefit us, the people, us, the society.

    The states do not use ethnic data to assess the true extent of social exclusion faced by most vulnerable groups of population (and let´s be clear — anyone of us can find oneself vulnerable at some point of life: falling ill, losing a job, or turning old).  And since the states do not base social policies on disaggregated data, even the most advanced policies usually keep the most vulnerable invisible. Logically, the success and impact of social programmes on the most vulnerable cannot be measured, either. Roma policies across Europe present a glaring example of how state policies can fail if they are not based on solid ethnic data.

    But there is another side to this. Information, including ethnic data, is power. As any power, when unchecked, it corrupts. The states´ ability to gather and use unfathomable amounts of personal information, without us even knowing it, can and does lead to excesses. Who at some point has not received communications from businesses offering personalised deals (unsolicited yet rather tailored)? Ever wondered how come they knew so much about you? It is open to speculation whether the states — or companies that help states acquire private data — sell or share our information, or whether they do not keep it secure enough and allow privacy breaches. But it is disconcerting in any scenario.

    Racial profiling is another example. Racial or ethnic profiling is categorising persons according to their perceived ability to commit specific crimes or behave in a particular way. And we are wrong if we believe it will always affect only others. Yesterday it affected Jews, Roma, disabled. Today it affects Muslims, Blacks, migrants. Tomorrow… who knows?

    If the states collect our personal information, no matter what, we might as well try to make them play by the rules, rather than passively waiving our rights. We can insist to access our private data (after all, it is not a state secret we are after). And we can insist that irrelevant data — most of it, for sure — be purged, and we should go to courts with this if necessary. And if enough people do it, it may finally become cheaper for the states to ask everyone´s permission in advance, than pay out afterwards.

    Now, can we do this bit?

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  • Centro de Investigaciones en Derechos Humanos 2:59 pm on April 16, 2010 Permalink | Reply
    Tags: , , , , , , , , , , , , social inclusion   

    What is to be learned from success of right-wing parties across Europe? 

    Alphia Abdikeeva, CIDH ProIgual

    The most recent electoral gains for another ultra-nationalist party, this time in Hungary, where anti-Roma Jobbik shoot from nowhere into the tie for the second largest chunk of seats in the parliament, brought up another round of discussions about the economic crisis´ impact on the voters. Mainstream politicians, especially the left-leaning, are going to get it wrong again. It is not the crisis per se. It is not even deep-seated xenophobia in many European voters. It is simplicity with which right-wing/nationalist leaders explain their message to the voters, something that the more sophisticated politicians do not seem to be capable of, and that keeps costing them votes.

    If we remember the previous elections to the European Parliament in 2004 (not at all a crisis period, on the contrary, a period of economic boom), right-wing parties had made considerable gains there. And elections, for example, in the early noughties in the Netherlands when Pim Fortuyn´s message was so well received, the country was not doing too bad economically, either. So, without discounting an economic crisis as a factor,  let´s admit that on its own it is not a decisive factor for people voting for right-wing parties.

    The message of xenophobic parties is always quickly dismissed by the mainstream and especially left-wing counterparts as not worth talking about. But perhaps this is a mistake? Perhaps, the message, and especially the way it is presented, needs to be dissected, studied and in some ways even used? Just listen to the brilliant simplicity of “2 legs bad, 4 legs good,” or “foreigners steal our  jobs.” Trying to explicate that foreigners actually take jobs that natives do not want and make contributions to economy through paying taxes, work product, etc., somehow muddles up the message.

    Perhaps, some liberals or even centrists are too well-educated and too sophisticated and that becomes a problem? Instead of using simple words, black-and-white images, and clear/memorable slogans they delve into all sorts of shades of grey — and get lost in translation, or even in their own message.

    Of course life, and any public issue, is more complicated than black-and-white. But the European voters have grown accustomed to information presented with a lightening speed, whether it is a toothpaste commercial or presentation of a political platform. To be ahead of the game, mainstream politicians should refine their message — without losing its integrity. And who knows, maybe when pro-diversity, pro-immigration, pro-inclusion politicians learn to present their messages with similar, enviable simplicity of their opponents, the political landscape of many European countries might become quite different.

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  • Centro de Investigaciones en Derechos Humanos 7:43 am on March 7, 2010 Permalink | Reply
    Tags: , , , , , , , , , social inclusion, ,   

    Intelligence is a subjective matter 

    Alphia Abdikeeva, CIDH Pro Igual

    It is interesting to read definitions of intellectual disability. They are vague and conditional.Perhaps, rightly so. Deciding who is intelligent and who is not, who is capable and who is not, is after all a very subjective matter.

    I have met some minority children with Down´s syndrome and other specificities that professionals would define as intellectual disabilities. Being from families where two (or more) languages were routinely spoken at home, these children grew up bilingual. A bilingual person with an intellectual disability defies any definition. How many so-called “normal” people in the US, UK, Spain, or other country with a widely spoken language ever master a second language? So, who is disabled then?

    The other day I had an urgent post delivery. It was brought by a man whom professionals would also define as having an intellectual disability. However, he has a paid job (a postal carrier), he drove a vehicle (which means he had passed a test to get a driving licence, which is more than I managed, with my academic degrees). In short, he is a full member of society, which chose to include him, support him, and which benefits from his social inclusion (in the form of taxes, work product, and non-expenditure on institutional and other costs), as much as he does.

    What a contrast to countries in Eastern Europe where abandoned children are institutionalised and often are neglected to the point that they do not master elementary skills, which puts their development on the level with those who were born with inherent developmental disabilities. Then the states pay for this neglect with life-long disability pensions. And it hurts to think that just a portion of the money some states spend on keeping people with disabilities locked up, where they are invisible, unwanted and abused, could be enough to support them to become rightful, contributing members of society.

     
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