From the New York Times:

Human rights groups report that many people with disabilities are being held against their will in Central and Eastern Europe, stripped of the most basic rights by legal guardianship laws even when they may be capable of looking after themselves.

Advocates say it is fairly easy for relatives to convince a judge to place a person under guardianship simply because they want control over assets.

A study of guardianship in eight former Communist countries completed last year by the Mental Disability Advocacy Center in Budapest found jaillike regimens for patients with a wide range of mental disabilities, with one million adults in the region subject to “significant, arbitrary and automatic” violations of their human rights.

… Often, guardians use their powers to send their wards to large state institutions forever.

“We call it civil death,” said Victoria Lee, a lawyer at the advocacy center. “Once you are under guardianship, that’s it. You basically become a nonperson. These guardianship systems have no safeguards.”

From Minnesota Public Radio, WCCO TV:

A 54-year-old Minnesota man is being subjected to electro-convulsive therapy against his will, and is asking a judge to stop the court-ordered treatment. He’s been getting ECT every week or two since May.

Raymond Sandford says the process is painful and it is causing him to lose his memory. His doctors say the procedure is necessary to combat his periodic psychotic episodes. Sandford has a condition described in court records as schizo-affective disorder with bipolar tendencies. An excerpt:

In cases like Ray Sandford’s, the treatment can be forced upon the patient, if doctors believe it’s the only way to make them well. There are no good numbers on how many people receive forced ECT in the U.S. It’s up to states to track these cases and most, like Minnesota, do not.

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By Jim Flanigan

Executive director of the Renssalaer County, NY, chapter of the Arc

I applaud Sarah Palin for her decision to follow through with her pregnancy after learning her son would be born with Down Syndrome. Her life and the lives of all her family members will be enriched by Trig.

However, I hope self advocates and families and friends of people with disabilities will not vote solely on the basis of Sarah Palin being a parent. There is so much more at stake.

When I first started working in this field 34 years ago, state institutions were the predominant place where government funds were spent. School age children with special needs were often excluded from public instruction. There were no supported employment programs and community residences were in their infancy.

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With no hope for recovery, death is the only way out

Ann Curry, on Dateline NBC, takes a film crew into Serbian institutions that look much the way institutions did in the U.S. a generation ago.

People with intellectual disabilities are shunned and warehoused, imprisoned without supervision under filthy conditions behind crumbling walls and rusted bars. They are given no treatment and meager care that may include being drugged or tied up day after day to control the anxiety and aggression that comes of being locked away. One man has been imprisoned in a crib for all of his 21 years. Among those shown are people with cerebral palsy, Down syndrome and other conditions.

Disability is a source of deep shame in Serbia, and parents are urged to put children with intellectual disabilities away in remote government institutions or risk financial ruin. Some surrender their children without ever glimpsing their faces.

Rasim Ljajic, a government official in charge of the institutions, acknowledged that the conditions are inhumane, but said the government does not have resources to fix the situation.

Said Laurie Ahern, associate director of Mental Disability Rights International:

The idea of being locked away and the idea that somehow these people, that their lives aren’t valuable, that they are less than human, because they were born with a disability. It’s horrendous.  And it’s awful. And it shouldn’t happen.

The video is here.

See earlier post here.

See also:

Reporter’s notebook, by Tim Sandler, NBC News producer

Shunned: Photos from inside Serbia’s mental institutions

Writing in the [UK] Guardian, Peter V. Berns says the portrayal of a person with an intellectual disability in the film “Tropic Thunder” is offensive and shouldn’t be tolerated.

He says the use of the word “retard” and other insulting language in the film could spark abuse, bullying and violence against people with intellectual disabilities. An excerpt:

The oppressive power of these words has deep resonance for individuals with intellectual disabilities and for the disability rights movement. In the lives of people with intellectual disabilities, the use of the R-word in this film represents a serious setback. The portrayal of this character sends a clear message to the audience that the lives of people with intellectual disabilities are worth less and that it is acceptable to degrade and dehumanise them.

The history of people with intellectual disabilities in the U.S. evokes a dark time when these individuals suffered institutionalization, forced sterilization, segregation and other abuses. While the U.S. has made monumental strides toward including people with disabilities in the community, further progress will only be made if we speak out against bigotry, mistreatment and disrespect wherever we see it.

… We invite our colleagues in the disability rights movement, worldwide, to stand together and work to educate, inform and inspire people of conscience. Critics may try to dismiss our criticism as just some kind of politically correct talk, but that rejoinder is far too simplistic in the face of the suffering people with intellectual disabilities have experienced in their lives and throughout history. Individuals with disabilities should enjoy human rights on an equal basis with others without stigmatization, discrimination or prejudice. It is they who define themselves.

Peter V. Berns is the executive director of The Arc of the United States, the world’s largest community-based organization of and for people with intellectual and developmental disabilities.

From [Toronto] Globe and Mail:

Columnist and public health reporter Andre Picard says HIV-AIDS initiatives have sought to identify marginalized groups for treatment and prevention but “the largest of the marginalized groups has been callously ignored: People with disabilities.” An excerpt:

What few studies have been done — and there has been a lot more research done on transgendered people with HIV-AIDS than on disabled people with HIV-AIDS — suggests that the infection rate is significantly higher, probably two to three times more than the able-bodied and sound of mind.

Why?

In most societies, the disabled are shunned, at best hidden away and pitied. They are invariably the poorest of the poor: denied education and employment opportunities; unlikely to access health care services; frequent victims of physical and sexual violence; far more likely to end up in jail, particularly if they have a psychiatric illness.

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By National Review Online editor Kathryn Jean Lopez:

John McCain could reshape the nation’s view of selective abortion and advance the cause of human rights by choosing Sarah Palin as his running mate, Lopez says. He would also save some lives.

Palin is the Republican governor of Alaska who learned of her baby’s Down syndrome diagnosis during pregnancy and gave birth this year. Her website includes a page devoted to her son Trig with hundreds of welcoming comments from Americans across the nation.

Not only are children with Down syndrome people too, they inspire a deep love and enthusiastic appreciation. Especially in the face of a culture that wants to expunge them. According to a study cited in the New York Times last year, “About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.” (Emphasis added by Lopez.) Most American women are given prenatal tests.

At 44, Governor Palin is a bit young and relatively new to the political scene yet. These are no small considerations when electing someone who could assume the role of president (Democrats: Check out your nominee with that reservation . . . ) If the youngest life [Palin] and her husband care for can wake up a nation that’s blind to the eugenics in its midst, a routine part of medicine today, she and John McCain would be offering human rights and dignity a great, honorable service. In contrast to Barack Obama, who would let the survivors of botched abortion attempts be killed, the Palins could serve as a great clarifier for voters this fall – and an education.

See an earlier article by Lopez, Defining life down, that references a column of mine, The abortion debate no one wants to have.

Also, Realclearpolitics.com says the odds against Palin as a vice presidential candidate are 75 to one.

She may be a reformer with fans inside the new righty generation, but no one’s ever heard of her, and as far as we can tell she hasn’t been in the same room with McCain for years. Plus, it’s Alaska, which is probably her biggest drawback.

(United Feature Syndicate photo.)