1) Proposal to allow fees at ISD, ISVI causing a stir
The State Journal-Register
June 5, 2011

2) Blind, sighted form bike ‘partnerships’
Community Press Cincinnati
June 5, 2011

3) Like a Bat, Blind Man Uses Sound to ‘See’
ABC News/Health
May 26, 2011

4) Blind AIDS survivor discovers vision beyond sight
CNN Health
June 3, 2011

5) Law professor honored for work on human rights
news@Northeastern
June 6, 2011



1) Proposal to allow fees at ISD, ISVI causing a stir

Legislation that could require parents of blind or deaf children to pay additional school fees is causing a stir amongst advocates for those with special needs.

The proposal is contained in Senate Bill 1802, which passed the General Assembly on May 31, the last day of the spring legislative sessin.

If the measure is signed into law by Gov. Pat Quinn, the Illinois School for the Deaf and the Illinois School for the Visually Impaired, both in Jacksonville, could charge fees for things like room and board; books, labs and supplies; field trips; and extracurricular activities.

Supporters say the fees could help keep the schools open in the face of severe state budget cuts.

However, the Illinois Special Education Coalition contends that the provision violates federal laws that require states to pay for public school services required by special needs students.

Both schools are public schools.

"The bill takes a specific group of children and imposes a requirement that is not in place for any other child," coalition chair Bev Johns said.

Johns called the provision "obvious discrimination."

The fees would be charged on a sliding scale based on ability to pay, as determined by proof of income submitted by parents at the start of each school year. Families that receive public assistance would not have to pay the fees.

The coalition says  the measure violates the federal Individuals with Disabilities Education Act, as well as the Rehabilitation Act of 1973, which require state schools to provide free, appropriate public education.

"We have a federal law that says the education of children with disabilities is supposed to be free, and whatever that child needs is what is to be provided," Johns said.

She said she hopes Quinn issues an amendatory veto to erase the provision. A Quinn spokeswoman said the governor will review the proposal when it lands on his desk.

Johns would not comment on whether the coalition would challenge the law in court if it was signed.

The bill’s House sponsor said the fees could be a way to keep the schools open in a climate where the budget for the Department of Human Services faces a $1.1 billion cut.

"None of this is a good situation," Rep. Sara Feigenholtz, D-Chicago, said. "In lieu of shutting down their operation, they were able to come to some agreement on how to keep the doors open and the lights on."
Feigenholtz said parents, administrators and schools tried to work out an agreement that did "the best for the kids."

The parents of public school children already pay fees for extracurricular activities, drivers’ education, field trips and athletics. The schools for the blind and deaf are exempt from those fees. The measure will bring them in line with the rest of public schools, Feigenholtz said.

The fees would be charged at the discretion of the schools’ superintendents. Representatives of the schools could not be reached on Friday.

Rep. Jim Watson, R-Jacksonville, whose district contains ISD and ISVI, said the situation isn’t ideal, but it is more important to keep the schools open.

"When you see what they accomplish, it’s amazing," Watson said.

Watson said Quinn threatened to close the schools when the House cut his proposed budget’s funding for education, the second time in three years the Quinn administration has said it might close the schools.

"Do I wish we didn’t have to do it (impose fees)? Absolutely," Watson said. "To me, it’s more of a reaction to what the administration threatened."

http://www.sj-r.com/state/x907623429/Proposal-to-allow-fees-at-ISD-ISVI-causing-a-stir


2)    Blind, sighted form bike ‘partnerships’

Daniel Kish was 13 months old when he lost his eyes to cancer, but that didn't stop him from getting around. By making a clicking noise with his tongue and listening for the echo, Kish could figure out where things were around him, a skill that baffled his parents.

"I don't know that they really noticed the clicking right away," said Kish, 45. "I think they just noticed that I was able to find my way around."

Kish has since mastered the skill, known as echolocation. Like a bat, he uses sound to see.

"Sound is like light in that they're both waves of energy," Kish said. "These waves of sound bounce off things in the environment, and when they return they actually carry with them an imprint of what they've encountered."

Kish of Long Beach, Calif., said his brain learned to interpret the information contained in the echoes and use it to construct images.

"It's basically a representation of what's taking up space in the environment based on location, dimension and depth of structure," meaning the solidness of objects, Kish said. "The image that you get," which is colorless and has no grayscale, "basically combines those characteristics."

As president of World Access for the Blind, a non-profit organization based in Long Beach, that helps blind people learn to "get around more effectively and lead their lives with greater freedom," Kish teaches other blind people how to echolocate. And to better understand how the technique works, he teamed up with Canadian scientists for a brain imaging study.

"Dan was eager to come up and explore the possibility that there may be some interesting things happening in his brain while he's echolocating," said Mel Goodale, director of the Centre for Brain and Mind at the University of Western Ontario in London, Canada, and senior author of the study published Wednesday in PLoS One.

Using magnetic resonance imaging, Goodale and colleagues studied the pattern of activity in Kish's brain when he was listening to clicks and echoes. Instead of activating his auditory cortex, the area responsible for interpreting sound, the clicks and echoes appeared to activate Kish's visual cortex.

"It was really quite amazing," Goodale said. "It looked like it was recruiting a good chunk of the primary visual cortex in his brain."

Kish said he hopes the study adds credibility to his approach, which could attract the resources needed to deliver it more widely.

"Right now, most of the funding goes toward vision preservation and restoration, which is fine for those individuals for whom it will work, but it won't work for everyone," Kish said. "We can help blind people see their environment now."

Kish showed off his incredible talent on the Discovery Channel show "Is It Possible" by finding a rubber ball in the middle of a field. But while echolocation allows him to detect objects up to 100 yards away, he hasn't ditched his white cane.

"We can kind of think of echolocation as being sort of far vision; it's good for things that are far away and off the ground," he said. "The cane is good for things that are nearer and at ground level."

Kish and Goodale will reconnect for a follow-up study in June aimed at teasing out how the brain system interpreting the echoes is organized.

"Blind people should realize that this is an opportunity; that you can do quite a bit with echolocation," Goodale said "I think it's important to get it out there. It may not be for everyone, but it's worth a try."

http://abcnews.go.com/Health/MindMoodNews/blind-man-echolocation/story?id=13684073


3)    Like a Bat, Blind Man Uses Sound to ‘See’

Daniel Kish was 13 months old when he lost his eyes to cancer, but that didn't stop him from getting around. By making a clicking noise with his tongue and listening for the echo, Kish could figure out where things were around him, a skill that baffled his parents.

"I don't know that they really noticed the clicking right away," said Kish, 45. "I think they just noticed that I was able to find my way around."

Kish has since mastered the skill, known as echolocation. Like a bat, he uses sound to see.

"Sound is like light in that they're both waves of energy," Kish said. "These waves of sound bounce off things in the environment, and when they return they actually carry with them an imprint of what they've encountered."
Kish of Long Beach, Calif., said his brain learned to interpret the information contained in the echoes and use it to construct images.

"It's basically a representation of what's taking up space in the environment based on location, dimension and depth of structure," meaning the solidness of objects, Kish said. "The image that you get," which is colorless and has no grayscale, "basically combines those characteristics."

As president of World Access for the Blind, a non-profit organization based in Long Beach, that helps blind people learn to "get around more effectively and lead their lives with greater freedom," Kish teaches other blind people how to echolocate. And to better understand how the technique works, he teamed up with Canadian scientists for a brain imaging study.

"Dan was eager to come up and explore the possibility that there may be some interesting things happening in his brain while he's echolocating," said Mel Goodale, director of the Centre for Brain and Mind at the University of Western Ontario in London, Canada, and senior author of the study published Wednesday in PLoS One.
Using magnetic resonance imaging, Goodale and colleagues studied the pattern of activity in Kish's brain when he was listening to clicks and echoes. Instead of activating his auditory cortex, the area responsible for interpreting sound, the clicks and echoes appeared to activate Kish's visual cortex.

"It was really quite amazing," Goodale said. "It looked like it was recruiting a good chunk of the primary visual cortex in his brain."

Kish said he hopes the study adds credibility to his approach, which could attract the resources needed to deliver it more widely.

"Right now, most of the funding goes toward vision preservation and restoration, which is fine for those individuals for whom it will work, but it won't work for everyone," Kish said. "We can help blind people see their environment now."

Kish showed off his incredible talent on the Discovery Channel show "Is It Possible" by finding a rubber ball in the middle of a field. But while echolocation allows him to detect objects up to 100 yards away, he hasn't ditched his white cane.

"We can kind of think of echolocation as being sort of far vision; it's good for things that are far away and off the ground," he said. "The cane is good for things that are nearer and at ground level."

Kish and Goodale will reconnect for a follow-up study in June aimed at teasing out how the brain system interpreting the echoes is organized.

"Blind people should realize that this is an opportunity; that you can do quite a bit with echolocation," Goodale said "I think it's important to get it out there. It may not be for everyone, but it's worth a try."

http://abcnews.go.com/Health/MindMoodNews/blind-man-echolocation/story?id=13684073


4)    Blind AIDS survivor discovers vision beyond sight

(CNN) -- Some of Kurt Weston's self-portraits feature shapeless eyes hiding behind amorphous glasses. Others are marred with spidery, distorting streaks.

These otherworldly fragments are his attempt to convey what it's like to lose almost all of your eyesight to complications from HIV and view the world through the peripheral forms that remain.

"I wish I could just turn on the windshield wiper or clean the glass, but it doesn't work that way," the Huntington Beach, California, artist says.

Weston can look back on the past 30 years and see a life profoundly entwined with the history of AIDS. He traces his HIV journey to the months before June 5, 1981, a date recognized by many as the first time a mysterious pattern of illnesses -- later associated with HIV/AIDS -- was identified.

Based on his sexual history, Weston says he believes he contracted HIV in 1980. He suspects that a monthlong flulike illness that year may have been an early symptom of infection with the virus. As the years passed, he heard more and more about HIV during the 1980s. Several gay friends told him they were infected, and he heard stories of people dying of AIDS.

A case of pneumocystis pneumonia, a common infection in AIDS patients, led to his official diagnosis of full-blown AIDS in 1991. His immune system was so damaged by then that doctors told him he likely had had the disease for years.

Cytomegalovirus retinitis, another known complication, began to take away his vision in 1993. Doctors told Weston the damage had probably been slowly progressing for years before symptoms began to appear. Weston recalls one night in particular when he was in a theater and couldn't see the person to his left, but he could see everything else. That's when his vision loss really started to hit him.

Weston experienced other complications that year. A case of Kaposi's sarcoma left visible lesions on his skin, which Weston says made him feel humiliated. Sometimes, he says, people would start whispering about him.
After Weston developed his third case of pneumonia, it became clear that he would not be able to continue working as a commercial fashion photographer. He went on disability in 1993, and has been on it ever since.
"You kind of have to take a warrior mentality," he says. "I'm not going to let these things beat me. I'm not going to let these things cheat me out of the life I want to have."

Becoming a survivor

During the mid-'90s, Weston describes feeling like he was in "survival mode" in which his life revolved around grueling and often experimental HIV/AIDS treatments. One remedy forced him to wear a backpack that would pump chemicals directly into his body through a "PICC line" of tubing inserted through a vein in one of his arms to reach near his heart.

Despite his difficulties, he tried to help others as best as he could. He started a support group called SWAN, or Surviving With AIDS Network. But the virus was relentless. At one point, he watched helplessly as three to four people he knew died per week. Today, he says he believes most of the dozens of support group participants from that time are now dead.

He ran the group from 1993 to 1995, when he moved from Chicago to California to be with his brother. Weston says he thought he was going home to die as doctors said he only had a few months to live.
Although Weston's vision began to degenerate, he says he stayed hopeful and continued to seek medical treatments. In early 1996, doctors surgically inserted therapeutic pellets into his eyes and had him take a special drug. But this new treatment backfired, and the combination of the treatments added to the damage that cytomegalovirus was already doing, leaving Weston's vision almost completely destroyed.

Today, Weston wears a patch over his completely blind left eye and has only peripheral vision in his right eye, which is often marked with streaky "floaters" that "slosh around every time I move my eye," he says. He compares his vision to an "impressionist painting." To prevent further eye damage, he uses special eye drops regularly to this day.

Weston says he got the news later in 1996 that he was a candidate to try a new protease inhibitor more advanced than other HIV treatments available at the time. This new development successfully boosted his T cell counts and brought him hope that he could survive.

But the drug came a few months too late to prevent his failed eye treatment, and Weston's triumph was bittersweet. Still, a growing sense of hope inspired Weston to pick up his camera again. He received training in how to live while visually impaired and discovered he could still take pictures. He started to get involved in art shows.

'Something to focus on'

Finally, Weston decided the time had come to vent his frustration about his vision loss through photography. He produced a body of work called "Blind Vision," using mixed materials such as tinsel and foam over glass to convey interruptions of vision.

"You can see my hand gesturing as if I kind of want to wipe away the obstruction in front of my vision," he said. "That was my way of wanting to illustrate the desire to get rid of that obstruction in my vision."

The eerie photos have drawn a huge amount of attention, spawning articles and art exhibitions.

Alina Oswald, a CNN iReport contributor from Jersey City, New Jersey, wrote a book in 2006 using Weston's story as a lens on the history of AIDS. She titled it "Journeys Through Darkness." Oswald had first discovered Weston while writing for a magazine that covers AIDS-related issues. She says the photography haunted her.

"I was fascinated with his story," she says. "This guy is a fashion photographer; this is his life; this is his passion. Then he became legally blind, and he thought his life is over. He's really a warrior. He went through a lot of things. What impressed me is his willingness to survive this bitter loss and prevail and succeed."

This month, Weston's work is being displayed in Washington's John F. Kennedy Center for the Performing Arts for the fourth time. "Blind Vision" will be part of a broader show called "Shift" looking at artwork created by people with disabilities. Weston turns to digital photography as a way of expressing his visual intelligence.
He's also delving headfirst into a new photographic project inspired by a frightening setback in 2008. Weston was diagnosed with a rare abdominal cancer, and doctors feared the tumor would burst and spread like a dandelion. But miraculously, he says, the fears never materialized, and he remains healthy.

Desperate for answers during this time, Weston's family sought the advice of a medium. The medium said Weston would be OK, but he needed to spend time in nature. Weston obeyed, leading to his current project exploring the healing properties of nature.

The ongoing "Seasons in a Prayer Garden" photo series is an examination of the world through nature. The colorful, peaceful images contrast sharply with his tortured "Blind Vision" photos, displaying evidence of Weston's healing process.

Weston says he believes nature has a restorative power, even if it cannot immediately be perceived. Through the vibrancy of the color images, he says he hopes to represent light frequencies visible to birds and insects but not to the human eye.

"These latent color frequencies have a healing and regenerative effect on our minds and physical bodies," he says.

He's returned to work, having recently taught photography at California State University, Fullerton. His current focus is producing art full time.

Weston gets lots of help from his partner and his guide dog. Extra-large computer monitors and magnifying devices assist his work.

Weston says he hopes his creations could be displayed in clinical settings and doctor's offices, possibly making a difference for those dealing with an HIV diagnosis.

"I know what it's like to have to sit in a doctor's office for a very long time," he says. "It would be nice to have something to focus on or mediate on instead of having to sit and worry about what the diagnosis might be."
Weston says dealing with AIDS has been an "amazing journey" and he's thankful that he's been able to return to the work he loves -- and inspire others in the process. And, he adds, having a positive attitude and being surrounded with people who care for you is important.

"I always say to never think your journey is done, because you never know how much time you have and how much you can contribute along the way."

http://www.cnn.com/2011/HEALTH/06/03/blindphoto.irpt/

5)    Law professor honored for work on human rights

Hope Lewis, a legally blind law professor at Northeastern University, has been named Employee of the Year by the Carroll Center for the Blind and the Massachusetts Commission for the Blind for her work as an international law and human rights teacher and scholar.

The Carroll Center, a non-profit agency based in Newton, Mass., teaches legally blind people how to adapt to living with their disability. The center is named after Reverend Thomas J. Carroll, who pioneered new concepts in rehabilitation training and vocational development for the visually impaired.

"I hope this award raises awareness about disabilities and employment rights," said Lewis, who co-founded the law school's Program on Human Rights and the Global Economy.

In 1995, Lewis was diagnosed with diabetic retinopathy. She reads standard-sized text with corrective magnifying lenses, employs speech software for voluminous journal articles and refers to a super-sized seating chart for classroom teaching.

Her disability, she said, helps shape her push for social and economic justice.

She is currently writing a book on the human rights of immigrants from the English-speaking Caribbean. Labor laws, she said, often do not adequately protect women who are forced to provide for their families by becoming domestic or health care employees in the United States.

"A recently enacted domestic workers’ bill of rights in New York allows employees to take one day off per week, establishes wage protections and addresses other workplace abuses," Lewis said. "It seems like those are intuitive stipulations, but women in particularly low-wage jobs fall through the cracks and their human rights are violated."

Her textbook, "Human Rights and the Global Marketplace: Economic, Social, and Cultural Dimensions," received the 2008 U.S Human Rights Network Notable Contribution to Human Rights Scholarship Award.

The book, she said, is the first of its kind in the United States to focus on food, housing and health care as basic human rights. As Lewis put it, "These issues tend to get second-class treatment."

Lewis has also blogged about the human rights impact of violence, poverty and natural disasters for IntLawGrrls: Voices on International Law, Policy and Practice. She blamed government officials for mishandling the needs of disabled men, women and children who were victims of Hurricane Katrina and the magnitude 7.0 earthquake in Haiti.

"Many disabled people suffered disproportionately or became disabled as a result of these disasters," Lewis said. "Thinking this was a minor issue, government officials missed the boat on reintegrating them into rebuilding efforts and mainstream society."

http://www.northeastern.edu/news/stories/2011/06/hopelewis.html