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  • Centro de Investigaciones en Derechos Humanos 5:31 pm on June 5, 2011 Permalink | Reply
    Tags: Bulgaria, , , , , , , , , , people with disabilities, , , , 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: , , , , , , , , people with disabilities, , ,   

    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 9:48 am on June 16, 2010 Permalink | Reply
    Tags: , , , , , , , , people with disabilities, , ,   

    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 3:43 pm on June 6, 2010 Permalink | Reply
    Tags: , , , conflict-of-interest, corruption, , people with disabilities,   

    The World Health Organization that cried “flu pandemic” 

    Alphia Abdikeeva, CIDH Pro Igual

    A recent article in British Medical Journal (BMJ), WHO and the pandemic flu ´conspiracies´, by Deborah Cohen and Philip Carter, reveals that scientists advising the WHO on planning for the flu epidemics were also on payrolls of leading pharmaceutical companies. These companies would benefit, but the WHO never disclosed conflicts of interests. What is more, the WHO vehemently denied and discredited as “conspiracy theories” any attempts at inquiry.

    There are (at least) three issues of concern here. The first is a conflict of interest, which per se is very troubling. It is not pretty to see in a village veterinarian´s clinic, and it gets only uglier when it affects a major international organization funded, ultimately, from our pockets, through the member states´ contributions. Any country where such practices are uncovered would normally be chided by the Transparency International or the like. Yet here we observe a global Banana Republic in action, and no remedies in sight: apparently, despite those revelations, the WHO still has not changed its disclosure rules as of this date.

    The second issue is a potential health hazard for those who were influenced by the WHO into taking shots. The WHO urged vaccination, even though no adequate clinical trials were conducted prior to vaccination, and thus no evidence was available for making an informed choice whether risks posed by the flu outweighed risks posed by the vaccine. This incident brings memories of several major health problems ultimately caused by the greed of pharmaceuticals that in their urge to shovel money skipped an essential trial stage, or were rather creative with the patients´ informed consent. Thalidomide babies can attest to that. And that fuels the feeling of frustration, mixed with fury, because again the most vulnerable groups of population: pregnant women, young children and elderly, were exploited and put at risk. These groups in various countries were practically forced, or threatened into taking flu shots last season.  We can only hope that those flu shots would not scar the lives of “Tamiflu babies” whose moms got vaccinated at own risk, with the WHO blessing.

    Last but not least, there is a shadow of the future. What if tomorrow a real, deadly pandemic occurs? Will people still trust the claims of an organization that had been scattering its prestige on questionable steps before? Or will the WHO advice be ignored as the claims of a proverbial boy who cried wolf one time too many?

     
  • Centro de Investigaciones en Derechos Humanos 4:35 pm on April 7, 2010 Permalink | Reply
    Tags: , , , , , people with disabilities,   

    Priests child abuse scandals: any justice in sight? 

    Alphia Abdikeeva, CIDH ProIgual

    That was some Easter. Plagued by pedophilia  scandals all across the globe, Vatican had to provide some sort of explanation for — by far not an isolated incident of — child abuse by Catholic priests. The Pope´s verdict: society is corrupt, its corruption penetrates even the churches, and in accordance with this logic clergymen must remove themselves even further from society (and its laws?).

    But this reasoning is problematic for at least two reasons. First, there is law, it is (ideally) the same for everyone, and those who break the law should not be permitted to hide behind the Church walls from the responsibility. Second, if the  spiritual leaders are so easily corrupted by society, which they aspire to lead to salvation, then perhaps their leadership role is too big a job for them.

    When an ordinary John Loe or Jane Moe abuses a child, the overwhelming majority of us are indignant and expect that person to get punishment, and with steps to prevent something like this from happening again. How come then, that up to now, couple decades after church child abuse cases started to come up to the surface after being hushed up, still hardly any abusers are behind the bars? Not just bribed their way out of justice through offering monetary settlement to the victims, but truly were tried and sentenced? Or, for starters, stripped of their  church rank, rather than allowed to resign quietly or moved to another location where they continued to abuse other children?

    How come the authorities and the police in places where such abuses occurred hadn´t condemned these acts, and hadn´t pursued the perpetrators with all severity of the law during all this time? Or is the Church above the law? Is it also above the elementary decency and morality, upon which modern laws are ultimately based?

    Some analysts were quick to suggest that celibacy may be responsible for priests´ child abuse. But arguing whether celibacy is good or bad is beside the point. After all — at least based on evidence presently available — only some priests committed abuses. A much bigger issue is at stake: how Vatican deals with those who do commit abuses.

    The Church´s official position is clear: child abuse is wrong (we would not expect them to say otherwise). But why then have the Church authorities (including the then Cardinal Ratzinger, the future Pope Benedict) been for years so vehement to silence victims, shield the perpetrators, and cover up the story? It seems that if they fought child abuse with equal zeal, perhaps the current problem hadn´t snowballed to the same extent. Why didn´t they deal with the abusers?

    Is the Church´s reputation more precious than the wrecked lives and souls of thousands of children, some already with disabilities, who suffered sexual abuse by priests? What happened to the moral values and decency that the Church is supposed to be the guardian of? Have they all been “corrupted” by society? Isn´t Church supposed to be able to withstand “temptation” and “corruption,” by virtue of its self-acclaimed mission on Earth?

    P

     
  • Centro de Investigaciones en Derechos Humanos 7:25 am on March 20, 2010 Permalink | Reply
    Tags: , , class, , , , , , , , people with disabilities, , race, ,   

    It is the race, stupid! 

    Alphia Abdikeeva, CiDH ProIgual

    Academics, policy-makers and rights advocates often ponder which of the identity markers is decisive for measuring social disadvantage of minority groups: class, faith, sex, citizenship/nationality, disability, or race? The simplest thing to do to in order to find out, it appears, is to cross-compare each factor.

    Let´s start with disability and class. Who is more disadvantaged: a poor person with a disability or a rich person with disability? Clearly, money can buy many things. Although it may not be able to buy health, it can certainly buy healthcare. So, class would appear to easily trump disability.

    Now let´s compare religion with a few factors. Who is more disadvantaged: Christians or Muslims in Europe? Many may immediately answer — and there is sufficient research to support it — that Muslims are more disadvantaged. But then who is disadvantaged more: citizen (usually convert) Muslims, let´s say, in France, or immigrant Muslims in the same country? Or, to twist it a bit, who is more disadvantaged, a Muslim woman who is a citizen, or a Muslim woman who is an immigrant? The answer still seems rather obvious: immigrants are more disadvantaged.

    But are all immigrants disadvantaged in the same way? Do immigrants from, let´s say, Eastern Europe, which would be undoubtedly poorer in their majority than West Europeans, find themselves in the same disadvantage as migrants from Africa or Asia? Are immigrants from South America, let´s say in Spain, in the same place as Africans or Asians? For some reason, it seems like a resounding no.

    Now let´s pay a virtual visit to a country of immigrants, the USA. It is a widely held belief that immigrants can make it in America if they work hard. And perhaps more than any other place the USA boasts a number of prominent personalities who were born elsewhere but did very well for themselves in the new home country. So, let´s compare immigrants from Asia or Eastern Europe with citizens … of African-American descent. Who is more disadvantaged in the USA? For some reason, it feels that nationality does not play as decisive a role anymore.

    Now let´s go down the map, to South America. Technically, most countries there are poorer than countries in Europe or North America. They also have their own inequalities, quite possibly class-based. But which groups are still more disadvantaged, let´s say in Brazil: white (Hispanic) or black/mixed? The answer comes out almost automatically: black people. Some Brazilians even comment, informally, that everybody has a place in society strictly in accordance with his or her race. There are exceptions, obviously, like rich football players or movie stars, but they are what they are: exceptions.

    So, it seems rather obvious even to an unarmed (by scientific methodology) eye that race consistently comes first as a decisive factor of social disadvantage in society.

     
  • Centro de Investigaciones en Derechos Humanos 7:43 am on March 7, 2010 Permalink | Reply
    Tags: , , , , , , , people with disabilities, , , ,   

    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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