Updates from May, 2010 Toggle Comment Threads | Keyboard Shortcuts

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

    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, , ,   

    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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