Two quick articles
Jan. 4th, 2009 12:31 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conulyAdvertise on NYTimes.com
For the Blind, Technology Does What a Guide Dog Can’t
For the Blind, Technology Does What a Guide Dog Can’t
By MIGUEL HELFT
MOUNTAIN VIEW, Calif.
T. V. RAMAN was a bookish child who developed a love of math and puzzles at an early age.
That passion didn’t change after glaucoma took his eyesight at the age of 14. What changed is the role that technology — and his own innovations — played in helping him pursue his interests.
A native of India, Mr. Raman went from relying on volunteers to read him textbooks at a top technical university there to leading a largely autonomous life in Silicon Valley, where he is a highly respected computer scientist and an engineer at Google.
Along the way, Mr. Raman built a series of tools to help him take advantage of objects or technologies that were not designed with blind users in mind. They ranged from a Rubik’s Cube covered in Braille to a software program that can take complex mathematical formulas and read them aloud, which became the subject of his Ph.D. dissertation at Cornell. He also built a version of Google’s search service tailored for blind users.
Mr. Raman, 43, is now working to modify the latest technological gadget that he says could make life easier for blind people: a touch-screen phone.
“What Raman does is amazing,” said Paul Schroeder, vice president for programs and policy at the American Foundation for the Blind, which conducts research on technology that can help visually impaired people. “He is a leading thinker on accessibility issues, and his capacity to design and alter technology to meet his needs is unique.”
Some of Mr. Raman’s innovations may help make electronic gadgets and Web services more user-friendly for everyone. Instead of asking how something should work if a person cannot see, he says he prefers to ask, “How should something work when the user is not looking at the screen?”
Such systems could prove useful for drivers or anyone else who could benefit from eyes-free access to a phone. They could also appeal to aging baby boomers with fading vision who want to keep using technology they’ve come to depend on.
Mr. Raman’s approach reflects a recognition that many innovations designed primarily for people with disabilities have benefited the broader public, said Larry Goldberg, who oversees the National Center for Accessible Media at WGBH, the public broadcasting station in Boston. They include curb cuts for wheelchairs, captions for television broadcasts and optical character-recognition technology, which was fine-tuned to create software that could read printed books aloud and is now used in many computer applications, he said.
With no buttons to guide the fingers on its glassy surface, the touch-screen cellphone may seem a particularly daunting challenge. But Mr. Raman said that with the right tweaks, touch-screen phones — many of which already come equipped with GPS technology and a compass — could help blind people navigate the world.
“How much of a leap of faith does it take for you to realize that your phone could say, ‘Walk straight and within 200 feet you’ll get to the intersection of X and Y,’ ” Mr. Raman said. “This is entirely doable.”
ADVOCATES for the blind have long complained that technology companies have done a generally poor job of making their products accessible. The Web, while opening many opportunities for blind people, is still riddled with obstacles. And sophisticated screen-reader software, which turns documents and Web pages into synthesized speech, can cost more than $1,000. Even with a screen reader, many sites are hard to navigate.
Last year, the National Federation of the Blind reached a settlement of a landmark class-action lawsuit against one company whose site advocates found unusable, Target. In the settlement, the retailer agreed to make its Web site accessible to blind people. The federation assesses the usability of Web sites and currently certifies only a handful as being fully accessible.
One challenge is that technology often evolves much faster than the guidelines that ensure Web sites work well with screen readers. In December, the World Wide Web Consortium, an Internet standards group, released Version 2.0 of its accessibility guidelines for Web sites. The previous version dated back to 1999, when the Web consisted largely of static Web pages rather than interactive applications.
Obstacles on the Web take many forms. A common one is the Captcha, a security feature consisting of a string of distorted letters and numbers that users are supposed to read and retype before they register for a new service or send e-mail. Few Web sites offer audio Captchas.
Some pages are just poorly designed, like e-commerce sites where the “checkout” button is an image that isn’t labeled so screen readers can find it.
“The overwhelming percentage of the industry really hasn’t stepped up to the plate to provide the blindness community with equal access to their products,” said Eric Bridges, director of advocacy and governmental affairs at the American Council of the Blind. Mr. Bridges and other advocates argue that accessibility should be built into new technologies, not added as an afterthought.
People with other disabilities face similar challenges on the Internet. “On the deafness side, the frustration is huge because of all of the video out there without captions,” Mr. Goldberg said.
MR. RAMAN, who before joining Google in 2005 worked at Adobe Systems and as a researcher at I.B.M., is intimately familiar with accessibility problems, both personally and professionally. In 2006, he developed a version of Google’s search engine that gives a slight preference to Web sites that work well with screen readers. The system had to test millions of Web pages.
“You wouldn’t have found a single page that fully complied with the accessibility guidelines,” Mr. Raman said. Still, the system could detect which pages worked reasonably well with screen readers.
The service is not being used as widely as he had hoped. Still, it has had an impact. Several Web site operators whose sites weren’t showing up prominently in Google search results asked Mr. Raman how they could fix their sites so they would rank better.
The service includes a screen magnifier that enlarges individual search results. Mr. Raman says the feature is intended to help low-vision users, but it could also prove useful to a much larger population, especially on cellphones and other devices with small screens.
For his own use, he has built a highly customized system that allows him efficient access to much of what he needs on his PC and on the Web, stripping out anything that could slow him down. For instance, the system goes directly to the article text on the news sites he reads regularly, bypassing navigational links and other features found on most Web pages.
On a recent day, Mr. Raman was working on a research paper about the future structure of the Web. A monitor hung above the desk. It is usually turned off, unless he wants to show a colleague or visitor what he is working on. He typed at his keyboard, his head slightly tilted to one side, listening to his screen reader through a pair of wireless headphones.
The screen reader is calibrated to speak at roughly triple the speed of a normal voice. To the untrained ear, the output is incomprehensible, but it allows Mr. Raman to “read” at roughly the same speed as a sighted person.
Processing information quickly is a skill he has developed over the years: a video on YouTube shows him solving his Braille Rubik’s Cube in 23 seconds. When he is not typing, Mr. Raman, who wears large sunglasses, is often folding and unfolding pieces of paper into tiny, origami-like geometrical shapes at prodigious speed.
He shares a work area at Google with Charles Chen, a 25-year-old engineer, and Hubbell, Mr. Raman’s guide dog. (Hubbell has his own Web site.)
Mr. Chen, who is sighted, developed a free screen reader for Web pages that works with the Firefox browser. Working together, the two recently added keyboard shortcuts that help blind and low-vision users navigate quickly through Google’s search results. They’ve also developed tools to make sophisticated Web applications, like e-mail and blog readers, suitable for screen-reading software.
Now, much of their effort is focused on touch-screen phones.
“The thing I am most interested in is all of the stuff moving to the mobile world, because it is a big life-changer,” Mr. Raman said.
To show their progress, Mr. Raman pulled his T-Mobile G1, a touch-screen phone with Google’s Android software, from a pocket of his jeans. He and Mr. Chen have already outfitted it with software that speaks much like a screen reader on a PC. Now they are working on ways to allow blind people, or anyone who is not looking at the screen, to enter text, numbers and commands.
That development would complement voice-recognition systems, which are not always reliable and don’t work well in noisy environments.
Since he cannot precisely hit a button on a touch screen, Mr. Raman created a dialer that works based on relative positions. It interprets any place where he first touches the screen as a 5, the center of a regular telephone dial pad. To dial any other number, he simply slides his finger in its direction — up and to the left for 1, down and to the right for 9, and so on. If he makes a mistake, he can erase a digit simply by shaking the phone, which can detect motion.
He and Mr. Chen are testing several other input methods. None of these technologies have been rolled out, but Mr. Raman, who is already using the G1 as his primary cellphone, hopes to make them freely available soon.
(Few screen readers are available for smartphones today, and they can often cost as much as a phone itself.)
What may become the most life-changing mobile technology — a phone that can recognize and read signs through its camera — may still be a few years away, Mr. Raman said. Already, some devices can read text this way. But because blind users don’t know where signs are, they can’t point the camera at them or align it properly, Mr. Raman said. Once chips become powerful enough, they will be able to detect a sign’s location and read skewed type, he said.
“Those things will happen,” he said. When they do, sighted users will benefit, too.
“If you have the technology that can recognize a street sign as you drive by it, that is helpful for everyone,” he said. “In a foreign country, it will translate it.”
Mr. Raman’s innovations have already made their way onto millions of PCs. At Adobe in the 1990s, he helped to adapt the PDF format so it could be read by screen readers. That was required for PDF to be used by the federal government, and it eventually led to the technology’s being embraced as a global standard for electronic documents.
“It was incredibly important to us as a business, and to the blind,” said John Warnock, the chairman and founder of Adobe.
Mr. Raman says he thinks he has the largest impact when he can persuade other engineers to make their products accessible — or, better yet, when he can convince them that there are interesting problems to be solved in this area. “If I can get another 10 engineers motivated to work on accessibility,” he said, “it is a huge win.”
In Eastern Europe, Lives Languish in Mental Facilities
In Eastern Europe, Lives Languish in Mental Facilities
By MATTHEW BRUNWASSER
PRAVDA, Bulgaria — The name of this isolated spot in the lush Danube plains means justice or, in Russian, truth.
But little of either seems to have penetrated the home for men with mental disabilities and illnesses here, a bleak establishment reached most easily by a bone-jarring, six-hour ride from Sofia, the capital.
In the Communist era, this is where authorities hid the mentally ill from public view. Today, the Pravda Social Care Home for Men with Mental Disorders, a small complex of scrappy, two-story buildings, is still a favored destination for city folk to send away relatives with a mental illness or disability — and not worry about hearing from them again, employees and residents here say.
Across Central and Eastern Europe, many people with mental illnesses or disabilities are sequestered without rights or recourse under Communist-era rules that put their fates in the hands of legal guardians, often regardless of the severity of their disabilities, according to human rights groups.
In the tumult of the two decades since free markets and imperfect democracy took hold in Eastern Europe, the laws governing guardianship have largely remained intact, stripping hundreds of thousands of people of the authority to make the most basic decisions about their lives, even when they may be capable of looking after themselves, advocates say.
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.
Throughout Eastern Europe, legally appointed guardians decide where their wards live, how to spend their money, how to use their property and sometimes even whom they can befriend or be intimate with. Often, guardians use their powers to send their wards to large state institutions forever.
Beyond that, the laws here in Bulgaria and across the region often fail to ensure any oversight of guardians who assume control of their wards’ property or bank accounts, the center found.
“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.”
Since the law assumes that guardians act in the best interest of their wards, there are no legal mechanisms to prevent guardians from neglecting their responsibilities or seeking financial gain. While the directors of social care institutions are required by Bulgarian law to submit yearly audits of their wards’ finances, the fine for failing to do so is about 14 cents.
Scattered legislation that sometimes contravenes international law, unclear standards for when guardians are warranted and a lack of due process in some countries in Eastern Europe mean that it is fairly easy for a relative to convince a judge that someone with a mental illness or disability should be placed under guardianship — simply because he or she wants control over assets, advocates say.
“It’s not for riches,” said Aneta Genova, a lawyer from the Bulgarian Helsinki Committee, an international human rights group representing several wards at Pravda. “It’s usually for little things, like using a room in an apartment, or renting or selling a property.”
Defenders of guardianship say the legal system is there to protect and care for people with mental disabilities, who may be helpless on their own.
But compared with the protections in most Western countries, guardianship systems in Central and Eastern Europe make few provisions for individual needs. Instead, they offer a black and white approach — full guardianship or nothing at all — to people along a wide spectrum of mental disabilities, advocates say.
Some countries are trying to change the system. In Hungary, Parliament is considering legislation to introduce so-called supporters, who would help mentally ill or disabled adults understand their situation and make their own decisions.
With guardianship, however, “it’s easy to get in, but almost impossible to get out,” said Oliver Lewis, executive director of the Mental Disability Advocacy Center.
Legal appeals to remove guardianship and restore legal capacity can lead to “Kafka-like” situations, Mr. Lewis said, because in many countries in Eastern Europe the procedures require the consent of the guardian. “Often the guardians don’t want the people to appeal, because it is in their financial interest to have the person remain under their guardianship,” Mr. Lewis said.
The director of the Pravda home, Beyti Hussein, testifies to the abandonment and helplessness of the residents.
Mr. Hussein said a typical story was one about identical twin brothers, Kiril and Metodi Mitsev, 46, who have schizophrenia and came to Pravda in 2000. Their brother Julian, appointed their guardian by a court, has never visited. And because his permission is required for the twins to travel, they are not allowed to leave the area except on field trips led by the home.
According to documents kept by the home, the brothers own shares in two buildings and land in Kyustendil, southwest of Sofia, as well as an apartment in Sofia. Yet their only income is about $30 per year from their elderly father’s pension.
“I can’t say why he doesn’t come,” Metodi Mitsev said of Julian. The twins do not even have his phone number.
“These people are resigned to their fate,” said Stoyanka Dimitrova, a social worker at the home. “There is no one to protect them and no one to show them how to claim what is rightfully theirs.”
Metodi Mitsev does the talking for the brothers. His gregariousness balances Kiril’s introversion. “If we were closer to Sofia it would be easier to visit our father, and we could find a lawyer,” Metodi Mitsev said. Their father is too old to make the long trip to Pravda, he said. Changing homes would require the consent of their guardian.
“A lot of years have gone by,” he said, staring off into the plains surrounding the home. “We are far away from the city and miss civilization. We have no girlfriends here. I miss taking getaways.”
For the Blind, Technology Does What a Guide Dog Can’t
For the Blind, Technology Does What a Guide Dog Can’t
By MIGUEL HELFT
MOUNTAIN VIEW, Calif.
T. V. RAMAN was a bookish child who developed a love of math and puzzles at an early age.
That passion didn’t change after glaucoma took his eyesight at the age of 14. What changed is the role that technology — and his own innovations — played in helping him pursue his interests.
A native of India, Mr. Raman went from relying on volunteers to read him textbooks at a top technical university there to leading a largely autonomous life in Silicon Valley, where he is a highly respected computer scientist and an engineer at Google.
Along the way, Mr. Raman built a series of tools to help him take advantage of objects or technologies that were not designed with blind users in mind. They ranged from a Rubik’s Cube covered in Braille to a software program that can take complex mathematical formulas and read them aloud, which became the subject of his Ph.D. dissertation at Cornell. He also built a version of Google’s search service tailored for blind users.
Mr. Raman, 43, is now working to modify the latest technological gadget that he says could make life easier for blind people: a touch-screen phone.
“What Raman does is amazing,” said Paul Schroeder, vice president for programs and policy at the American Foundation for the Blind, which conducts research on technology that can help visually impaired people. “He is a leading thinker on accessibility issues, and his capacity to design and alter technology to meet his needs is unique.”
Some of Mr. Raman’s innovations may help make electronic gadgets and Web services more user-friendly for everyone. Instead of asking how something should work if a person cannot see, he says he prefers to ask, “How should something work when the user is not looking at the screen?”
Such systems could prove useful for drivers or anyone else who could benefit from eyes-free access to a phone. They could also appeal to aging baby boomers with fading vision who want to keep using technology they’ve come to depend on.
Mr. Raman’s approach reflects a recognition that many innovations designed primarily for people with disabilities have benefited the broader public, said Larry Goldberg, who oversees the National Center for Accessible Media at WGBH, the public broadcasting station in Boston. They include curb cuts for wheelchairs, captions for television broadcasts and optical character-recognition technology, which was fine-tuned to create software that could read printed books aloud and is now used in many computer applications, he said.
With no buttons to guide the fingers on its glassy surface, the touch-screen cellphone may seem a particularly daunting challenge. But Mr. Raman said that with the right tweaks, touch-screen phones — many of which already come equipped with GPS technology and a compass — could help blind people navigate the world.
“How much of a leap of faith does it take for you to realize that your phone could say, ‘Walk straight and within 200 feet you’ll get to the intersection of X and Y,’ ” Mr. Raman said. “This is entirely doable.”
ADVOCATES for the blind have long complained that technology companies have done a generally poor job of making their products accessible. The Web, while opening many opportunities for blind people, is still riddled with obstacles. And sophisticated screen-reader software, which turns documents and Web pages into synthesized speech, can cost more than $1,000. Even with a screen reader, many sites are hard to navigate.
Last year, the National Federation of the Blind reached a settlement of a landmark class-action lawsuit against one company whose site advocates found unusable, Target. In the settlement, the retailer agreed to make its Web site accessible to blind people. The federation assesses the usability of Web sites and currently certifies only a handful as being fully accessible.
One challenge is that technology often evolves much faster than the guidelines that ensure Web sites work well with screen readers. In December, the World Wide Web Consortium, an Internet standards group, released Version 2.0 of its accessibility guidelines for Web sites. The previous version dated back to 1999, when the Web consisted largely of static Web pages rather than interactive applications.
Obstacles on the Web take many forms. A common one is the Captcha, a security feature consisting of a string of distorted letters and numbers that users are supposed to read and retype before they register for a new service or send e-mail. Few Web sites offer audio Captchas.
Some pages are just poorly designed, like e-commerce sites where the “checkout” button is an image that isn’t labeled so screen readers can find it.
“The overwhelming percentage of the industry really hasn’t stepped up to the plate to provide the blindness community with equal access to their products,” said Eric Bridges, director of advocacy and governmental affairs at the American Council of the Blind. Mr. Bridges and other advocates argue that accessibility should be built into new technologies, not added as an afterthought.
People with other disabilities face similar challenges on the Internet. “On the deafness side, the frustration is huge because of all of the video out there without captions,” Mr. Goldberg said.
MR. RAMAN, who before joining Google in 2005 worked at Adobe Systems and as a researcher at I.B.M., is intimately familiar with accessibility problems, both personally and professionally. In 2006, he developed a version of Google’s search engine that gives a slight preference to Web sites that work well with screen readers. The system had to test millions of Web pages.
“You wouldn’t have found a single page that fully complied with the accessibility guidelines,” Mr. Raman said. Still, the system could detect which pages worked reasonably well with screen readers.
The service is not being used as widely as he had hoped. Still, it has had an impact. Several Web site operators whose sites weren’t showing up prominently in Google search results asked Mr. Raman how they could fix their sites so they would rank better.
The service includes a screen magnifier that enlarges individual search results. Mr. Raman says the feature is intended to help low-vision users, but it could also prove useful to a much larger population, especially on cellphones and other devices with small screens.
For his own use, he has built a highly customized system that allows him efficient access to much of what he needs on his PC and on the Web, stripping out anything that could slow him down. For instance, the system goes directly to the article text on the news sites he reads regularly, bypassing navigational links and other features found on most Web pages.
On a recent day, Mr. Raman was working on a research paper about the future structure of the Web. A monitor hung above the desk. It is usually turned off, unless he wants to show a colleague or visitor what he is working on. He typed at his keyboard, his head slightly tilted to one side, listening to his screen reader through a pair of wireless headphones.
The screen reader is calibrated to speak at roughly triple the speed of a normal voice. To the untrained ear, the output is incomprehensible, but it allows Mr. Raman to “read” at roughly the same speed as a sighted person.
Processing information quickly is a skill he has developed over the years: a video on YouTube shows him solving his Braille Rubik’s Cube in 23 seconds. When he is not typing, Mr. Raman, who wears large sunglasses, is often folding and unfolding pieces of paper into tiny, origami-like geometrical shapes at prodigious speed.
He shares a work area at Google with Charles Chen, a 25-year-old engineer, and Hubbell, Mr. Raman’s guide dog. (Hubbell has his own Web site.)
Mr. Chen, who is sighted, developed a free screen reader for Web pages that works with the Firefox browser. Working together, the two recently added keyboard shortcuts that help blind and low-vision users navigate quickly through Google’s search results. They’ve also developed tools to make sophisticated Web applications, like e-mail and blog readers, suitable for screen-reading software.
Now, much of their effort is focused on touch-screen phones.
“The thing I am most interested in is all of the stuff moving to the mobile world, because it is a big life-changer,” Mr. Raman said.
To show their progress, Mr. Raman pulled his T-Mobile G1, a touch-screen phone with Google’s Android software, from a pocket of his jeans. He and Mr. Chen have already outfitted it with software that speaks much like a screen reader on a PC. Now they are working on ways to allow blind people, or anyone who is not looking at the screen, to enter text, numbers and commands.
That development would complement voice-recognition systems, which are not always reliable and don’t work well in noisy environments.
Since he cannot precisely hit a button on a touch screen, Mr. Raman created a dialer that works based on relative positions. It interprets any place where he first touches the screen as a 5, the center of a regular telephone dial pad. To dial any other number, he simply slides his finger in its direction — up and to the left for 1, down and to the right for 9, and so on. If he makes a mistake, he can erase a digit simply by shaking the phone, which can detect motion.
He and Mr. Chen are testing several other input methods. None of these technologies have been rolled out, but Mr. Raman, who is already using the G1 as his primary cellphone, hopes to make them freely available soon.
(Few screen readers are available for smartphones today, and they can often cost as much as a phone itself.)
What may become the most life-changing mobile technology — a phone that can recognize and read signs through its camera — may still be a few years away, Mr. Raman said. Already, some devices can read text this way. But because blind users don’t know where signs are, they can’t point the camera at them or align it properly, Mr. Raman said. Once chips become powerful enough, they will be able to detect a sign’s location and read skewed type, he said.
“Those things will happen,” he said. When they do, sighted users will benefit, too.
“If you have the technology that can recognize a street sign as you drive by it, that is helpful for everyone,” he said. “In a foreign country, it will translate it.”
Mr. Raman’s innovations have already made their way onto millions of PCs. At Adobe in the 1990s, he helped to adapt the PDF format so it could be read by screen readers. That was required for PDF to be used by the federal government, and it eventually led to the technology’s being embraced as a global standard for electronic documents.
“It was incredibly important to us as a business, and to the blind,” said John Warnock, the chairman and founder of Adobe.
Mr. Raman says he thinks he has the largest impact when he can persuade other engineers to make their products accessible — or, better yet, when he can convince them that there are interesting problems to be solved in this area. “If I can get another 10 engineers motivated to work on accessibility,” he said, “it is a huge win.”
In Eastern Europe, Lives Languish in Mental Facilities
In Eastern Europe, Lives Languish in Mental Facilities
By MATTHEW BRUNWASSER
PRAVDA, Bulgaria — The name of this isolated spot in the lush Danube plains means justice or, in Russian, truth.
But little of either seems to have penetrated the home for men with mental disabilities and illnesses here, a bleak establishment reached most easily by a bone-jarring, six-hour ride from Sofia, the capital.
In the Communist era, this is where authorities hid the mentally ill from public view. Today, the Pravda Social Care Home for Men with Mental Disorders, a small complex of scrappy, two-story buildings, is still a favored destination for city folk to send away relatives with a mental illness or disability — and not worry about hearing from them again, employees and residents here say.
Across Central and Eastern Europe, many people with mental illnesses or disabilities are sequestered without rights or recourse under Communist-era rules that put their fates in the hands of legal guardians, often regardless of the severity of their disabilities, according to human rights groups.
In the tumult of the two decades since free markets and imperfect democracy took hold in Eastern Europe, the laws governing guardianship have largely remained intact, stripping hundreds of thousands of people of the authority to make the most basic decisions about their lives, even when they may be capable of looking after themselves, advocates say.
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.
Throughout Eastern Europe, legally appointed guardians decide where their wards live, how to spend their money, how to use their property and sometimes even whom they can befriend or be intimate with. Often, guardians use their powers to send their wards to large state institutions forever.
Beyond that, the laws here in Bulgaria and across the region often fail to ensure any oversight of guardians who assume control of their wards’ property or bank accounts, the center found.
“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.”
Since the law assumes that guardians act in the best interest of their wards, there are no legal mechanisms to prevent guardians from neglecting their responsibilities or seeking financial gain. While the directors of social care institutions are required by Bulgarian law to submit yearly audits of their wards’ finances, the fine for failing to do so is about 14 cents.
Scattered legislation that sometimes contravenes international law, unclear standards for when guardians are warranted and a lack of due process in some countries in Eastern Europe mean that it is fairly easy for a relative to convince a judge that someone with a mental illness or disability should be placed under guardianship — simply because he or she wants control over assets, advocates say.
“It’s not for riches,” said Aneta Genova, a lawyer from the Bulgarian Helsinki Committee, an international human rights group representing several wards at Pravda. “It’s usually for little things, like using a room in an apartment, or renting or selling a property.”
Defenders of guardianship say the legal system is there to protect and care for people with mental disabilities, who may be helpless on their own.
But compared with the protections in most Western countries, guardianship systems in Central and Eastern Europe make few provisions for individual needs. Instead, they offer a black and white approach — full guardianship or nothing at all — to people along a wide spectrum of mental disabilities, advocates say.
Some countries are trying to change the system. In Hungary, Parliament is considering legislation to introduce so-called supporters, who would help mentally ill or disabled adults understand their situation and make their own decisions.
With guardianship, however, “it’s easy to get in, but almost impossible to get out,” said Oliver Lewis, executive director of the Mental Disability Advocacy Center.
Legal appeals to remove guardianship and restore legal capacity can lead to “Kafka-like” situations, Mr. Lewis said, because in many countries in Eastern Europe the procedures require the consent of the guardian. “Often the guardians don’t want the people to appeal, because it is in their financial interest to have the person remain under their guardianship,” Mr. Lewis said.
The director of the Pravda home, Beyti Hussein, testifies to the abandonment and helplessness of the residents.
Mr. Hussein said a typical story was one about identical twin brothers, Kiril and Metodi Mitsev, 46, who have schizophrenia and came to Pravda in 2000. Their brother Julian, appointed their guardian by a court, has never visited. And because his permission is required for the twins to travel, they are not allowed to leave the area except on field trips led by the home.
According to documents kept by the home, the brothers own shares in two buildings and land in Kyustendil, southwest of Sofia, as well as an apartment in Sofia. Yet their only income is about $30 per year from their elderly father’s pension.
“I can’t say why he doesn’t come,” Metodi Mitsev said of Julian. The twins do not even have his phone number.
“These people are resigned to their fate,” said Stoyanka Dimitrova, a social worker at the home. “There is no one to protect them and no one to show them how to claim what is rightfully theirs.”
Metodi Mitsev does the talking for the brothers. His gregariousness balances Kiril’s introversion. “If we were closer to Sofia it would be easier to visit our father, and we could find a lawyer,” Metodi Mitsev said. Their father is too old to make the long trip to Pravda, he said. Changing homes would require the consent of their guardian.
“A lot of years have gone by,” he said, staring off into the plains surrounding the home. “We are far away from the city and miss civilization. We have no girlfriends here. I miss taking getaways.”
