Updates from June, 2012 Toggle Comment Threads | Keyboard Shortcuts

  • Centro de Investigaciones en Derechos Humanos 9:58 pm on June 3, 2012 Permalink | Reply
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    Did Spain just sentence to death thousands of people living with HIV/AIDS? 

    Alphia Abdikeeva, CIDH Pro Igual

    Spain is passing through tough economic times, and undoubtedly sacrifices need to be made to pull it out of the crisis. But at what cost? At first glance, the state budget 2012 practically puts thousands of people leaving with HIV/AIDS in Spain on a death row: funding for HIV programs has been cut to zero, from c. six million in the previous year.

    Why them, why so drastically? Did people leaving with HIV/AIDS cause the economic crisis rattling Spain and most of Europe? Are there no other, less cruel, budget reductions that could have been made?

    Why was the budget for the royal family only cut by 2% (c. 170,000 euro)? Could not the crown, in spirit of solidarity, let go of some of luxuries, such as hunting elephants or other animals in different parts of the world? The defence has not been particularly squeezed, either — but does Spain really face military threats? And why does the Catholic church continue receiving considerable state subsidies, in addition to enjoying a tax-free status, isn´t Spain constitutionally a secular state?

    One must question the reasoning behind at the same time cutting the education budget by 20% and the health budget by 6% amounting to nearly 10 million euro. Immigrants in irregular situation are among the first on a chopping bloc being from now on denied access to healthcare save for emergency services (and make no mistake: whenever sacrifice of the most vulnerable begins, it never ends there, it goes on to require more and more victims).

    Further to add an insult to injury, the Spanish government announced that it would support a failing bank with billions of euro. Thus banks, chiefly responsible for the current economic crisis, get state handouts taking funds from the innocent, in this case people with HIV/AIDS, as well as immigrants, pensioners, and young people. What´s more, the debt burden for bank bailouts is shifted onto future generations, both directly — through a growing public debt — and indirectly — through cutting educational and professional opportunities for the youth.

    The 2012 budget reductions, while being necessary and perhaps inevitable, show that something is fundamentally wrong with the Spanish state´s priorities and the state has better fix them before more damage is done.

     
  • Centro de Investigaciones en Derechos Humanos 9:04 am on October 1, 2010 Permalink | Reply
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    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
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    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
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    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
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    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 6:04 am on May 23, 2010 Permalink | Reply
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    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 7:25 am on March 20, 2010 Permalink | Reply
    Tags: , , class, , , , , , , , , , 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
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    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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