Thursday, October 2, 2008

Man with Down syndrome earns black belt in karate

From the Post-Bulletin in Rochester, Minn.:

Despite a runny nose and a barking cough, Bruce Stolp (pictured) joined his fellow karate students. The young man's face furrowed in concentration as he balanced on one foot and extended into a side kick.

For 10 years, Stolp has been a regular at Rochester's National Karate, coming three times a week for practice. His goal from the beginning has been simple: To earn his black belt. But in the beginning, the odds seemed stacked against him.

Stolp has Down syndrome, a genetic disorder that can result in intellectual and physical disabilities. When Stolp first told his parents, Neil and Peggy Stolp, that he wanted to earn his black belt, his parents cautioned him not to set his sights too high, worrying he would end up disappointed. But Bruce would not be deterred.

"When he would talk about reaching black belt, he would tell me 'Dad, I'm almost getting there.' He would just never give up," Neil said.

This month, Bruce reached his long-cherished goal. The 31-year-old traveled to the Twin Cities to test for his black belt and proved he was worthy. At that moment, Bruce said he thought, "Man, I did it."

Defying expectations is nothing new for Bruce. When he was born, his parents said doctors told them to not even bring their son home, saying he would never be able to live independently. But the Stolps ignored that advice, making sure to enroll their son in early education. When some questioned whether Bruce would ever be able to hear or speak, his parents remained confident, getting him hearing aids. Today, Bruce works as a janitor at Resurrection Lutheran Church, lives in Rochester and has a girlfriend.

As parents, Peggy Stolp of Oronoco said, "You are proud of all your kids. But (Bruce) has hit so many goals people would say he'd never hit."

National Karate instructor Bruce Nelson said he remembers when Bruce first came to his school 10 years ago, wanting to earn his black belt. He warned him it would be tough work. But Bruce proved up to the challenge, religiously attending classes and practicing.

There were plenty of frustrations along the way. Often, his fellow students would move ahead faster. And on one occasion, Bruce broke his foot while at practice, but Nelson said Bruce's determination never wavered.

"He never quit in 10 years and I respect him immensely for that," Nelson said.

Beyond earning his black belt, Bruce has proved himself to be skilled at karate form -- taking first and second place in national competitions held in the Twin Cities. When the big day arrived for him to test for his black belt, showing off his punches and round-house kicks before a crowd, his parents said their son earned a standing ovation.

But just because Bruce has reached his goal does not mean he is done. When asked whether the newly-minted, first-degree black belt planned to keep going, Bruce's answer was firm -- "Yes, I do."

Seattle woman works to empower Iraqi disabled people

The Seattle Times has a profile of Tiana Tozer who "works in Iraq helping disabled people find dignity, empowerment and maybe wheelchair basketball." Here's the intro to the story:


Tiana Tozer (pictured) lay in intensive care, begging a nurse to unplug her from life support. A drunken driver had taken away her ability to walk and her Peace Corps dream, and she was in agonizing pain.

But a physical therapist entered her hospital room and tried to recruit the tall, lanky blonde for a wheelchair-basketball team.

A year later, the thwack-thwack-thwack of a bouncing basketball ball would be the sound of rebirth for Tozer.

That was 20 years ago.

Tozer, now 40, is hoping the same familiar sound could bring dignity, self-respect and empowerment to disabled people in Iraq.

Tozer, the winner of gold and bronze medals in wheelchair basketball in the Paralympics, is well-known throughout the Northwest as a coach and advocate for teaching wheelchair basketball to disabled students. But in Iraq, where she works for Portland-based Mercy Corps, she is revered for her work helping the disabled fight for recognition, whether it's pushing for a law to set up a ministry for the disabled or starting a youth wheelchair-basketball team.

Tozer has a difficult task ahead of her. She not only has to help disabled Iraqis create a new life, but she also has to dispel the notion that they are less than able-bodied individuals.

While there is no confirmed number of disabled people in Iraq, the number is generally considered between 3 million to 5 million people, said David Holdridge, the Mideast regional director for Mercy Corps.

The high number is caused by a number of factors, including casualties from the Gulf War, the 2003 invasion of Iraq, the eight-year war between Iran and Iraq, atrocities by Saddam Hussein's regime, birth defects, poor health care and lack of any regulations or control on the use of dangerous chemicals, Holdridge said.

"The issue is not the lack of accessibility," Tozer said. "It's the attitude and the general lack of knowledge."

Wednesday, October 1, 2008

PETA's Got Autism? billboard upsets autism groups

From ABC News and PETA now has a Web page about the billboard:

The latest public anti-milk campaign by animal rights group PETA has stirred up controversy between doctors, parents and activists in the autism community.

A new PETA-sponsored "go vegan" campaign billboard in Newark, N.J., includes the phrase "Studies have shown a link between cow's milk and autism."

The animal rights group cites two studies by researchers at the University of Rome as reason for the purported "link," even though the studies themselves do not prove any connection between milk and autism.

Dr. Susan McGrew, associate professor of pediatrics at Vanderbilt University, said the billboard looks more like a scare tactic rather than an evidence-based statement.

"I'm concerned more about the people who don't have autism," McGrew said. "They will be scared that they'll get autism if they drink milk."

McGrew attributed the perceived link between milk and autism to what is called the "leaky gut theory," the idea that poorly digested proteins, including casein in milk, react with the opiate receptors in the brain. Some researchers hypothesize that a "leaky gut" may contribute to symptoms of autism. This has led some parents with autistic children to eliminate gluten, a protein in wheat, and milk products from their children's diet.

"Oftentimes children who have gluten sensitivity feel discomfort or pain, and because of that they become distressed, and when they become distressed often their reaction behavior becomes disconnected," said Dr. Leslie Rubin, director of the autism program at Children's Health Care of Atlanta. When on the gluten-free, casein-free diet, "those reactionary behaviors go away," Rubin said.

Rubin said the change in behavior may cause some parents to believe their child is cured of autism symptoms, when in fact the change in behavior is due to a relief of gastrointestinal discomfort. According to Rubin, there is no data to indicate that individuals with autism have more gluten or casein sensitivities than those who do not have autism.

This billboard is not the first attack on milk by the animal rights group. In previous statements, PETA has linked milk to other diseases, including cancer and diabetes.

However, according to Rubin, there are no studies proving any link between milk and the onset of disease.

PETA chose Newark for the first billboard of its kind because, according to a Centers for Disease Control and Prevention report, the city had one of the largest populations of individuals on the autism spectrum, the blog mentioned. PETA said it planned to place the ad in cities where the prevalence of autism is highest.

"Many people that I see on the diet may relieve some gastrointestinal issues, but I won't see anything different in their autism symptoms," said McGrew. "I have never seen anyone cured by the diet."

Many autism organizations agree with McGrew.

"We think the PETA ad campaign is inappropriate because it gives a misleading impression toward a cause or a treatment for autism," said Marguerite Kirst Colston, spokeswoman for the Autism Society of America.

"This advertisement gives the impression that drinking milk causes autism, and that is not the case," said Doreen Granpeesheh, executive director of Center for Autism and Related Disorders.

Granpeesheh said she understands PETA's intentions of the possible benefits of the casein-free diet and pointing to milk, but she said the presentation is walking the line with how the information is perceived. "I think it's really brave of PETA, but I don't think you could say that there has been a link between cow's milk and autism."

But some parents, including Shelley Reynolds, president of Unlocking Autism, swear by the gluten-free, casein-free diet. Reynolds said she has seen a significant improvement in her child's language and motor skills after removing dairy products from her child's diet.

"Our point with the billboard is to let the parents of autistic children know that they very well may see an improvement in their child's symptoms if they remove dairy," responded Bruce Friedrich, vice president for PETA.

Freidrich claimed the benefits of limiting the consumption of milk for people with autism significantly improves their quality of life.

"It's kind of funny to imagine how anybody in the autistic support community could take issue with a campaign that educates people to help autism," Freidrich said.

Reynolds agreed, saying PETA's billboard is purely an awareness campaign of the stomach pain, diarrhea and behavioral reactions when some children with autism drink milk.

"There are not a lot of things you cannot control in autism, but you can control your child's diet," Reynolds said. "We don't hold parallel views with PETA, but I think that anything that sheds light on the autism crisis is awesome."

Michelle Guppy, who leads Texas Autism Advocacy in Houston, also agreed.

"If [the billboard] alerts parents to potential issues that are valid, then I don't much care who is putting the ad on," Guppy said.

The messenger does matter, Rubin said. He warned against trusting an animal rights group to make a collective recommendation for all individuals, including those without sensitivities to milk.

"I think this has more to do with 'milk is wrong' than getting it right with autism," Rubin said. "This latest billboard is the latest tangential attack, and I'm suspicious about what their ulterior motive is."

Disability awareness month begins today

The Tallahassee, Fla., Democrat writes about employment efforts in that area, and the National Disability Employment Awareness Month poster to the right is available from the U.S. Department of Labor's Office of Disability Employment Policy.


There are numerous reasons why some of Florida's 3.2 million disabled residents experience difficulty finding a job.

Today marks the beginning of Disability Employment Awareness Month, an opportunity to provide insight into the obstacles people who are disabled face when seeking employment. There will be numerous activities, ceremonies and fundraisers to recognize people with disabilities including Disability History and Awareness Weeks, the 12th Annual Ability Awards on Oct. 8 and Disability Mentoring Day a week later.

"One of the biggest obstacles facing persons with disabilities in the Panhandle area is lack of inter-county transportation," said Bryan Vaughan, executive director of the Governor's Commission on Disabilities, and a person with a disability. "The lack of competitive jobs in general in the Panhandle region further complicates the issue."

With Florida's 6.5 percent unemployment rate, it's highest point since 1995, finding employment may be difficult for anyone — let alone a person with a disability. During Florida's '07-'08 fiscal year, 12,458 Floridians found, or kept, jobs through the Florida Division of Vocational Rehabilitation.

The Division of Vocational Rehabilitation is not the only local agency that provides assistance to people with disabilities who are looking for employment. The Able Trust, Ability 1st and Workforce Plus are among agencies that work to connect the disabled community to employers.

"I think we've made headway because there are entities like the Business Leadership Network bringing business leaders together and giving them an opportunity to hire people with disabilities," said Judith Barrett, executive director of Ability 1st. "Those efforts have made a difference. There is a lot more openness to hiring someone with a disability."

Willingness to hire a person with a disability may be there; however, that has not translated into jobs. In 2006 the employment rate for persons with disabilities was 37.7 percent nationally and 39.1 percent in Florida according to an annual disability status report published by Cornell University.

Bruce Weaver helps people within the disability community find jobs as an independent living coordinator for Ability 1st. As someone with a disability who spent four years looking for a job that befits his degree in rehabilitative services, Weaver understands the challenges and frustration.

"If you want to be employed, it may take a while, and you never know," Weaver said. "It took years for me to find this one, and I'm sure there are others who have been looking as long as me."

The primary challenges facing people with disabilities are opportunities for employment, accessibility to transportation and housing concerns.

For Lori Fahey, and parents like her, the problem is knowing where to find employment information for their children. Fahey is the president and chief executive for Tallahassee-based Family Cafe, an organization that provides information to people with disabilities and their families.

"If you know how to find them they could be one of the many resources you can access, the problem is knowing where to go to find them," Fahey said. "There is no phone book, or directory for resources."

Fahey's daughter, Carly, was instrumental in getting the Legislature to pass a bill making the first two weeks in October Disability History and Awareness Weeks. During the two-week event elementary and secondary students will learn about the history of the disability movement and issues that currently face the community.

"The hope is that by educating children as well as adults that some of the misconceptions and stigmas about persons with disabilities will be removed," Vaughn said.

Disability organizations in Hungary ask for ombudsman to monitor disability rights compliance

From Caboodle.hu in Hungary:


Thirteen civic organisations representing persons with disabilities sent an open letter to the cabinet and the prime minister, calling for a parliamentary commissioner to monitor compliance with the rights of the disabled, Oct. 1's nationwide daily Nepszava reported.

The letter noted that although Hungary was the first European nation to ratify the UN Convention on the Rights of Persons with Disabilities back in June 2007, it has done next to nothing to implement those rights.

One group of advocates for persons with disabilities has established a Hungarian Disability Caucus based on the International Disability Caucus, and, wrote Nepszava, was calling on the government to appoint an independent domestic body to be charged with monitoring implementation of the UN convention. It also called for a parliamentary commissioner - ombudsman - for disability issues, suggesting that the office of the civil rights ombudsman increase its disability advocacy in the meantime.

The civic coalition called on the government to present new plans before November 3, the date of a UN meeting in New York, where convention signatories are scheduled to report on implementation, Nepszava wrote.

Scientists say they've discovered dyslexia gene

From Reuters Oct. 1:

LONDON — The common genetic variation linked to dyslexia may also help explain why some people without the learning difficulty are not good readers, researchers said on Oct. 1.

The finding also points to the gene most likely to be involved in dyslexia among a handful of candidates, said Silvia Paracchini of the Wellcome Trust Center for Human Genetics in Oxford, who led the study.

She stressed the variation does not appear to impair cognitive development and is related to reading ability, not intelligence.

"This is the first time this same genetic variant has been shown to be important to dyslexia and to reading ability in general," Paracchini said in a telephone interview. "It looks like this gene is involved in determining whether a person is a good reader or a bad reader."

Dyslexia is a learning difficulty affecting the development of literacy and language-related skills such as reading and spelling. It does not affect intelligence and affects as many as an estimated one in 10 people.

The researchers looked at the gene called KIAA0319 involved in development of the area of the brain responsible for thought processes. Previous research has identified it as a possible genetic link to dyslexia.

They studied more than 6,000 seven- to nine-year-old children and determined through tests that the 15 percent who carried the mutated version of the gene tended to have problems reading, including those who were not dyslexic.

"Even if they were defined as not dyslexic, they still had problems reading," Paracchini said.

Previously the team had shown that the variation acts like a dimmer switch which reduces the gene's power to do its normal job as a fetus grows.

The findings, published in the American Journal of Psychiatry, give researchers a target as they try to understand better why some people develop dyslexia and others are less good at reading than the general population, Paracchini said.

"There are likely to be many other contributing factors, but our research provides some valuable clues," she added in a statement. "We need to carry out studies into the exact role that this gene plays in brain development and how this affects people's reading ability."

Weekly Reader adapted for kids with learning disabilities

A press release from AbleNet on BusinessWire:

ST. PAUL, Minn. -- AbleNet announced the release of the new 'Weekly Reader AbleNet Editions' which is a product that meets the specific educational requirements of each state and offers students content specific to their disability level.

AbleNet also offers a comprehensive set of content and materials that allow students with disabilities to work with standards-based content found in Weekly Reader publications. The company has specially designed and developed both elementary and secondary publications for students with mild, moderate or severe disabilities. The teachers guide offers specialized strategies for differentiated instruction and includes materials for three unique levels of instruction in an effort to meet the needs of students in special education.

"This is an exciting new classroom content offering that delivers fresh, new ways to keep students engaged in learning, while meeting the unique educational standards for each state," states Jen Thalhuber, CEO of AbleNet, Inc. "We are focused on helping school districts protect their valuable federal funds by improving the performance of students with a wide range of disability. This modified publication is a critical link in helping assure that school districts meet the educational requirements of the 'No Child Left Behind' requirements and the Individuals with Disabilities Education Act (IDEA)."

"Because educational standards vary from one state to the next, Weekly Reader and AbleNet set out to the meet the challenge of providing fresh, engaging, and relevant content to this population of students," states Ann Meyer, Director of Research and Development at AbleNet Inc. "Additionally, our curricular team has introduced a new level of content available weekly for students needing 'high interest low vocabulary texts' while taking the guesswork out of meeting Individualized Education Program (IEP) mandates and Adequate Yearly Progress (AYP) requirements in each state."

A full-year subscription to 'Weekly Reader AbleNet Editions' includes 32 standard Weekly Reader Edition, two print publications or 25 WR News Senior Edition publications, plus access to online special education content. The Weekly Reader AbleNet Editions downloadable content includes an adapted Teacher's Guide, student literacy, worksheets, and activities for students at varying levels of abilities (Level 1, Level 2 and Level 3).

Parents of adults with Down syndrome educate the "younger generation" of parents

CNN. com has story about the Wincent family of Illinois, who have helped nurture their son and brother with Down syndrome, Zach, who is 19 and attends community college. Here's part of the story:


Marget Wincent has never met Sarah Palin, but she hopes the Republican vice presidential candidate will respond to her recent e-mail. Wincent said she encouraged Palin, whose son Trig has Down syndrome, to "get that little guy on skates when he's a couple years old, and enjoy those snowmobile rides."

Zach Wincent, now 19, (pictured) works at Target near his family home in St. Charles, Illinois.

"Sometimes you're scared as a parent, and you wonder if your child is going to be able to do this and this and this," Wincent said recently. "And you know what? You just go out and try it, and you live each day at a time, and you celebrate all the great things that happen."

Wincent's own son Zach, now 19, also has Down syndrome. But the genetic disorder, which causes intellectual disabilities and other difficulties, has not prevented "Zach Attack" from enrolling in community college, climbing the Great Wall of China, coaching hockey games or becoming Prom king in high school.

Marget Wincent, a pediatric therapist in St. Charles, Illinois, who has worked with disabled children for 27 years, did not know about her son's condition until after he was born. He had a strong heart, walked at age 2 and signed at 18 months, which told her that he would be able to speak soon afterward.

Growing up, some children were kind to him, but other kids in the neighborhood made fun of her son, Wincent said. She believes that this came from lack of understanding of disabilities. She would tell these children that her son is a person just as they are and would follow up with phone calls to their parents.

Zach's adopted sister Zoe, now 14, stands up for him too, Wincent said.

"That's a really important role that families play in society: helping everybody else understand that everyone has feelings; everyone has a right to belong; everyone has to be accepted. You don't have to be his friend, but he sure deserves respect just like everyone else," Wincent said.

She credits the teachers who were "out-of-the-box thinkers" for helping her son in school.

Sometimes he needed a simple intervention to make school easier for him: For instance, in a middle-school science class, he just needed someone to retype the worksheets in a larger font because he reads slowly and has visual problems,
she said.

To teach him about business, Zach's mother collaborated with him in selling ristbands stamped with positive messages such as "I CAN" and "DREAM BIG" when he was 16. Zach got to put orders together and pack them for shipping. They still have extra, ready for a potential fundraiser in the future, she said.

Entrepreneurship is the newest wave of employment for people with disabilities, Wincent said. When her son is a little older and wants more ownership over his work, she hopes to help him start a small business. Both she and her husband have had their own businesses, she said.

In high school, Zach became good friends with kids on the ice hockey team and became an assistant coach his junior year. He will again coach the alumni game in
December, when college-age graduates return to the school to play against the varsity team.

"I have to get them in shape," he said. "I have a huge, huge hockey family."

These days, Zach attends a special-needs program at Elgin Community College and lives at home. His mother said she hopes that after the two-year program, he will be able to attend another school and live on a college campus.

Wisconsin university redesigns with accessibility in mind

From The Royal Purple student newspaper at the University of Wisconsin-Whitewater:

Universal design, the idea of providing equal access for everyone, is at the heart of new campus construction.

"The concept of universal design is the least amount of effort for the maximum number of people to utilize," said Elizabeth Watson, chair of the universal design committee on campus. "And the rule of thumb is that 95 percent of the general population should be able to use the space, the facility, the product or the policy without an accommodation."

Watson, who also is the director for the Center for Students with Disabilities, said UW-Whitewater made a commitment to apply universal design to every project, including the new college of business and economics building.

"In front of the library, where they're paving now and putting in all new sidewalks, you'll notice there are no stairs, with the exception of Hyer, which will still have stairs because the building is raised so high," she said. "The new COBE building … has no stairs to enter the building. The UC has no stairs to enter, except for one flight. That's part of universal design. In other words, everybody can use every entrance whenever they want to."

Before UW-Whitewater begins any new project, it is reviewed to make sure it is as accessible as possible and goes above and beyond the minimum standards, Watson said.

"A great example of that is the new residence hall," she said. "The Americans with Disabilities Act requires 5 percent of rooms be accessible to students. We're going with 10 percent of the rooms … and all rooms being visitor-friendly to students in wheelchairs."

Jeff Janz, interim dean of Student Life, said because the university has a special mission to students with disabilities, one of the goals was to make it extremely accessible.Janz said other than needing more square footage to accommodate students with disabilities, building the five-story residence hall is not substantially more costly.

"Naturally we always have to be watchful of budget and practical considerations," he said. "Square footage is usually one of the issues when you are looking at universal design. We couldn't make every single room accessible all the time for everyone or we couldn't afford to build anything."

In addition to more accessibility, Watson said the new residence hall will be equipped to help students with low vision or vision impairment, including having high- and low-contrast carpeting.

"So when you walk down the hallway, the carpet's not the same," Watson said. "So someone with low vision can distinguish a doorway versus hallway."

Watson said different floor textures also will be used so visually-impaired students can distinguish where they are in the building.

Of the 109 suites, 19 will be able to accommodate students with disabilities."For the first time, two students in [wheel]chairs will be able to room together in a single suite, and the bathrooms will be equipped with roll-in showers and other accommodations," he said.

The project is expected to be complete in 2010.

Kathi Wolfe: Presidential candidates need to address disability issues

Kathi Wolfe, who is visually impaired, is a freelance writer who often covers disability issues. A Progressive Media Project op-ed in the News & Observer in North Carolina:

Republican vice-presidential nominee Sarah Palin has repeatedly pledged to be an advocate for parents of children with special needs. On the Democratic side, Sen. Joe Biden has voiced his concern for children with disabilities.

Yet neither campaign is addressing the issues - from health care to education to employment to access to technology - that are of vital concern to people with disabilities, like myself. We often have the greatest need for medical care, but the most difficulty obtaining health care coverage.

Frequently, we can't obtain (individual) private health insurance because our disabilities are considered pre-existing conditions. Millions of us depend on Medicare or Medicaid (two troubled, underfunded government programs) for our health care. Others who don't qualify for Medicare or Medicaid end up being uninsured.

Parents struggle daily to obtain health care coverage for their children with special needs. They worry about how their offspring will get the medical care they'll need when they become adults. Yet the candidates aren't talking about what can be done to address the health care struggles of people like us and our families.

Nothing is more important to anyone's development than education. This is especially true for people with disabilities. Many of us would not be part of society or the workplace if we had not had the chance to obtain an education. I wouldn't be a writer today if my mother hadn't fought for my right to an education when I was a child.

Today, years since the Education for All Handicapped Children Act (now known as the Individuals with Disabilities Education Act) was passed in 1975, people with disabilities still face discrimination in schools - from kindergarten to high schools to colleges. To combat this prejudice, the act needs to be fully funded and enforced. But I don't hear the presidential campaigns talking about how to do this.

Though many of us are able and willing to work, the unemployment rate of people with disabilities is 70 percent, according to the U.S. Census Bureau. Frequently, we're unemployed because of prejudice (some employers don't want to hire disabled people) or barriers (such as the lack of wheelchair ramps or other forms of accommodation). Neither Sens. John McCain nor Barack Obama has spoken on the stump about how to remove these barriers.

Internet-based technologies such as social networks are rapidly changing how our culture operates. Yet, because many of these innovations are inaccessible if you're blind or deaf, people like me are often being left behind in this technological revolution. Even the Web sites of the presidential candidates aren't accessible to disabled people, according to the International Center for Disability Resources on the Internet.

There are 51 million Americans with disabilities, according to the U.S. Census Bureau. In this presidential campaign, the candidates have an opportunity to pay more than lip service to our issues. I hope they will seize it.

Kathi Wolfe is a legally blind writer and poet in Falls Church, Va. Readers may write to her at: Progressive Media Project, pmproj@progressive.org.

Adults with autism living life like everybody else give hope to parents

From the intro to a story in the Salt Lake City Tribune:


MURRAY, Utah - Matthew Pond (pictured with his wife) memorized Dr. Seuss' Hop on Pop when he was 2, but as he got older he couldn't name the color of Little Red Riding Hood's cape. He could speak, but he often repeated what he heard others say. He avoided eye contact.

When Pond was diagnosed with autism almost 30 years ago, his mother, Debbie Pond, kept her expectations high: She told a parent support group she wanted him
to attend school, make friends, go on an LDS mission, fall in love and raise a family.

"[The parent leader] slammed his hand down on the desk and said: 'You guys need to get real. Your son will never do these things,' " she remembers.

She explains this while sitting with Pond and his wife, Leann, in the couple's town house. Pond served an LDS mission, works as an armored truck guard, has an associate's degree and plans to get his bachelor's.

His level of success is rare, according to University of Utah researchers who recently tracked down adults who were diagnosed with autism from 1960 to 1984 and had higher scores on intelligence tests as children.

Nevertheless, the researchers and his family say Pond can offer inspiration in a state with a higher-than-average rate of autism, a disorder marked by unusual behaviors and difficulty communicating and interacting.

"We thought that could provide some hope," says William McMahon, chairman
of the U.'s psychiatry department, who is overseeing the study and is director of the Utah Registry of Autism and Developmental Disabilities. "We wanted to find out, at best, what can you tell parents about what their children might become 20 years later."

Massachusetts State House becomes more accessible

From The Boston Globe Sept. 30:


When the man hired to make the State House accessible to disabled citizens began work, his first task was to fix his own office.

Carl Richardson, coordinator of disability access for the Bureau of State Office Buildings, had to install a small plastic ramp over a bump blocking access for wheelchairs into his office when he began working last year.

Governor Deval Patrick, Senate President Therese Murray, and House Speaker Salvatore F. DiMasi gathered advocates for the disabled together in the State House yesterday to highlight a series of improvements, most of them little fixes such as Richardson's office, that they say will make the State House accessible to all Massachusetts citizens.

The tens of thousands of dollars in improvements were spurred by a lawsuit against the state that alleged the State House did not comply with some requirements of the Americans with Disabilities Act. The lawsuit was filed in 2005 by the Disability Policy Consortium on behalf of four handicapped plaintiffs who complained that the State House had no method of ensuring hearing-impaired citizens could participate in legislative proceedings.

Bill Allen, executive director of the consortium, said among the barriers was a meeting on a bill related to hearing aids in which legislative staff did not supply sign-language interpreters. The meeting was postponed after advocates complained.

A budget meeting that dealt with funding for programs for hearing-disabled was also held without interpreters, he said. And in a third case, a door to a room providing access to a handicap-accessible viewing gallery was locked during a hearing.

When efforts to resolve the problems failed in 2005, the consortium decided to file its lawsuit, Allen said. The state settled the suit last year with the hiring of Richardson and other commitments to improve access.

"The Massachusetts State House right now is a model for the rest of the country," Allen said.

Among the improvements made over the course of the past year are new power door lifts, closed-captioning for webcasts of legislative debates, and signlanguage interpreters available when requested for any proceedings. At the press conference, officials demonstrated screens that can be placed in meeting rooms and that can display the text of a speaker's words in real-time.

In addition to Richardson's office, several other offices had thresholds that impeded access for wheelchair-users, which have been outfitted with small ramps. The Bureau of State Office Buildings has installed power assisted doors throughout the State House, has printed training materials and conducted training for legislative staff, and has installed ATMs with Braille.

Richardson said other improvements are being planned, with a $239,000 annual budget the Legislature has put in place for improving accessibility.

"We're looking to make the artwork accessible for the blind, through audio descriptions," said Richardson, who is blind and hard-of-hearing. "The areas we highlighted today were quick fixes we could do right away."

Patrick, DiMasi, and Murray in separate remarks said ensuring full access to the State House for the disabled was an key part of making sure the site lived up to its responsibility to serve as the people's house.

"American democracy only works when all have an opportunity to participate," Patrick said. "And that has to as a practical matter include the ability to get access to this building physically and to the business of this building through communication."

Associated Press coverage of planned "Blindness" protests

From The AP Sept. 30:

BALTIMORE - Blind people quarantined in a mental asylum, attacking each other, soiling themselves, trading sex for food. For Marc Maurer, who's blind, such a scenario — as shown in the movie "Blindness" — is not a clever allegory for a breakdown in society.

Instead, it's an offensive and chilling depiction that Maurer fears could undermine efforts to integrate blind people into the mainstream.

"The movie portrays blind people as monsters, and I believe it to be a lie," said Maurer, president of the Baltimore-based National Federation of the Blind. "Blindness doesn't turn decent people into monsters."

The organization plans to protest the movie, released by Miramax Films, at 75 theaters around the country when it's released Oct. 3. Blind people and their allies will hand out fliers and carry signs. Among the slogans: "I'm not an actor. But I play a blind person in real life."

The movie reinforces inaccurate stereotypes, including that the blind cannot care for themselves and are perpetually disoriented, according to the NFB.

"We face a 70 percent unemployment rate and other social problems because people don't think we can do anything, and this movie is not going to help — at all," said Christopher Danielsen, a spokesman for the organization.

"Blindness" director Fernando Meirelles, an Academy Award nominee for "City of God," was shooting on location Thursday and unavailable for comment, according to Miramax. The studio released a statement that read, in part, "We are saddened to learn that the National Federation of the Blind plans to protest the film `Blindness.'"

The NFB began planning the protests after seven staffers, including Danielsen, attended a screening of the movie in Baltimore last week. The group included three sighted employees. "Everybody was offended," Danielsen said.

Based on the 1995 novel by Nobel Prize winner Jose Saramago, "Blindness" imagines a mysterious epidemic that causes people to see nothing but fuzzy white light — resulting in a collapse of the social order in an unnamed city. Julianne Moore (pictured above) stars as the wife of an eye doctor (Mark Ruffalo) who loses his sight; she feigns blindness to stay with her husband and eventually leads a revolt of the quarantined patients.

The book was praised for its use of blindness as a metaphor for the lack of clear communication and respect for human dignity in modern society.

Miramax said in its statement that Meirelles had "worked diligently to preserve the intent and resonance of the acclaimed book," which it described as "a courageous parable about the triumph of the human spirit when civilization breaks down."

Maurer will have none of it.

"I think that failing to understand each other is a significant problem," he said. "I think that portraying it as associated with blindness is just incorrect."

The protest will include pickets at theaters in at least 21 states, some with dozens of participants, timed to coincide with evening showtimes. Maurer said it would be the largest protest in the 68-year history of the NFB, which has 50,000 members and works to improve blind people's lives through advocacy, education and other ways.

The film was the opening-night entry at the Cannes Film Festival, where many critics were unimpressed.

After Cannes, Meirelles retooled the film, removing a voice-over that some critics felt spelled out its themes too explicitly.

Meirelles told The Associated Press at Cannes that the film draws parallels to such disasters as Hurricane Katrina, the global food shortage and the cyclone in Myanmar.
"There are different kinds of blindness. There's 2 billion people that are starving in the world," Meirelles said. "This is happening. It doesn't need a catastrophe. It's happening, and because there isn't an event like Katrina, we don't see."

NFB condemns the movie "Blindness," protests planned

A press release from the National Federation of the Blind (NFB) on Sept. 30:

National Federation of the Blind Condemns and Deplores the Movie Blindness; Protests Planned Across America on Opening Day

FOR IMMEDIATE RELEASE

Baltimore, Maryland (September 30, 2008): The National Federation of the Blind, the nation’s oldest and largest organization of blind people, today announced its strong objections to the forthcoming Miramax film release Blindness and announced that its members would protest at cinemas across the nation when the movie opens on October 3. The film is based on a novel by Portuguese author José Saramago, in which the inhabitants of an unnamed city suddenly go blind. Fearing that the mysterious blindness is contagious, the government quarantines the blinded citizens in an abandoned asylum, where moral, social, and hygienic standards quickly deteriorate and the blind extort valuables, food, and sex from one another. Only one woman, played in the film by Julianne Moore, remains able to see, feigning blindness to remain with her husband. She is portrayed as physically, mentally, and morally superior to the others because she still has her sight.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The National Federation of the Blind condemns and deplores this film, which will do substantial harm to the blind of America and the world. Blind people in this film are portrayed as incompetent, filthy, vicious, and depraved. They are unable to do even the simplest things like dressing, bathing, and finding the bathroom. The truth is that blind people regularly do all of the same things that sighted people do. Blind people are a cross-section of society, and as such we represent the broad range of human capacities and characteristics. We are not helpless children or immoral, degenerate monsters; we are teachers, lawyers, mechanics, plumbers, computer programmers, and social workers. We go to church, volunteer our time for worthy causes, raise children, operate businesses, and engage in recreational activities, just like everyone else. Portraying the blind on movie screens across America as little better than animals will reinforce the unfounded fears, misconceptions, and stereotypes in the general public about blindness. It will exacerbate the unemployment rate among the blind, which is already higher than 70 percent because of public misconceptions about the capabilities of blind people. It will reinforce false public notions that blind children are ineducable, that blind adults are unemployable, and that all blind people are socially undesirable. Blindness has been played for laughs in the past on the movie screen, but this film does something worse: it makes the blind objects not of mere ridicule but of fear and loathing. For Miramax and its parent company, the Walt Disney Company, to portray the blind in this manner, even as alleged allegory or so-called social commentary, is outrageous and reprehensible–and it is a lie.”
For more information, contact:
Chris Danielsen
Public Relations Specialist
National Federation of the Blind
(410) 659-9314, extension 2330
(410) 262-1281 (Cell)

NFB email campaign against the movie "Blindness"

Reprinted with permission from the National Federation of the Blind (NFB).

A flyer being sent around the country from NFB:

Blindness: A Movie that Harms the Blind

We Condemn and Deplore

The National Federation of the Blind condemns and deplores the negative,
damaging, and distorted description of blindness and blind people in the movie
Blindness, adapted for the screen from the novel of the same name by José Saramago. This outrageous and offensive movie reinforces society's fears and misconceptions about the blind and will lead to lost opportunities for employment and social acceptance. Contrary to the stereotypes and images this movie portrays:

• Blind people travel, work, go to school, raise families, play sports, and
participate in their communities.
• Blindness need not be a tragedy.
• Blind people are confident and competent human beings, with as much
imagination, creativity, and capacity as the average sighted person.

The Truth About Blindness -- Contrary to the assertions about blindness and blind people found in both the film and book, the National Federation of the Blind wants you to know that:

• Blind people are responsible; a sense of responsibility is not in any way related
to visual acuity.
• Blind people can care for themselves both physically and emotionally.
• Blind people are conscious of the importance of hygiene and personal
appearance; they do not live in filth and squalor.
• Blind people can successfully travel; they are not generally disoriented or
wandering without direction.
• Blind people are unique individuals; they are not without identity.
• Blind people are active in society, not isolated from others and the world.
• Blind people can perceive their surroundings and exercise judgment.
• Blind people are as dignified and conscientious as their sighted peers.

This Film Gets It Wrong

The premise in the film Blindness is that everybody but one person becomes
blind. The description of society as an increasing number of its members become
blind is one of filth, greed, perversion, and vice. The film depicts blind people as
incapable of doing everything, including basic tasks like bathing, dressing, and
traveling. Blindness becomes a metaphor for all that is bad in human thought and
action. Blind people in the movie have every negative human trait and few of the
positive ones. The only encouraging element in the release of this film is the almost
universal reaction of the critics that the film is a failure.

Marc Maurer, President of the 50,000-member National Federation of the
Blind, said of the film in his July 2008 banquet address, "The Urgency of Optimism":
“The capabilities of those who become blind remain essentially the same after
they lose vision as they were before they lost it. Although the loss of any major asset
(including vision) will bring a measure of sadness to some and despair to a few, it will
also stimulate others to assert their will. Blindness can be a devastating loss, but it also has the power to galvanize some to action. The reaction to blindness is not the least bit one-dimensional. Therefore the description is false. . . . The charge that loss of vision creates a personality alteration to a sordid and criminal character is in itself sordid and defamatory to an entire class of human beings.”

This film will do incalculable harm to the public image of blind people. Society labors under multiple misconceptions about blindness and blind people, and this film promises only to affirm and strengthen these false impressions. The film Blindness
will diminish opportunities for blind people to find employment, a distressing reality
considering that over 70 percent of blind people are already under-employed or
unemployed. The film will also further lower the general public's expectations about
the ability of blind people to be fully contributing members of society. Both of
these consequences will be devastating to the hopes and aspirations of blind people.
President Maurer concluded his reflections on the film when he said, "The description in Blindness is wrong–completely, unutterably, irretrievably, immeasurably wrong. That such falsity should be regarded as good art is revolting and amazing."


An email being sent nationwide:

Answers to Frequently Asked Questions Regarding the Movie Blindness

Q: What is the premise and plot of the movie Blindness?
A: Blindness is based on a novel of the same name by the Portuguese writer José Saramago. The premise of the movie is that unnamed residents of an unnamed city in an unnamed country suddenly and mysteriously go blind. Those who experience the blindness see only a white glare, so the blindness is sometimes called the “white sickness.” The blindness is contagious and the government immediately quarantines the victims in an abandoned and dilapidated mental asylum, with orders that anyone attempting to leave is to be killed.

The prisoners are given food and supplies, but deliveries are inadequate and become increasingly irregular. The asylum also becomes filthy because the blind inmates, as portrayed in the movie, cannot find their way to the bathroom and simply relieve themselves on the floor or in their own beds. Some of the inmates die from infection, disease, or are shot by guards when they try to escape or simply become lost and wander too close to the fence.

The inmates of ward one, led by an ophthalmologist’s wife who can still see but feigns blindness to remain with her husband, fare slightly better than the rest; the implication is that this is solely because she assists the blind, portrayed as being unable to do anything for themselves. As food supplies dwindle, another group of blind inmates, whose leader has acquired a gun and dubbed himself “the King of Ward Three,” begins to terrorize the others. The armed clique in ward three hoards all the food, extorting money and valuables from the other inmates and eventually demanding sex with the women from other wards in exchange for allowing the rest of the inmates to eat. One of the members of this clique, who was born blind and is not a victim of the white sickness, knows how to read and write Braille and is given the task of taking inventory of the valuables stolen from the other inmates.

When the women from ward one go to ward three to exchange sex for food, one of the women is beaten to death as she is raped. The doctor’s wife later kills the King of Ward Three, but the man who was born blind takes his place as leader of the armed gang and threatens to avenge the “King” by killing the doctor’s wife. Being blind, however, he is unable to shoot her and she escapes unharmed. The rest of the inmates finally decide to do battle with the gang in ward three; just before the showdown, someone sets a pile of bedding alight, starting a fire that soon engulfs the entire asylum. During the ensuing confusion, the man who was born blind shoots himself. When the surviving inmates, including the group led by the doctor’s wife, escape the burning asylum, they discover that no soldiers are standing guard and they are free.

Outside the makeshift prison, everyone has gone blind and the city has descended into total chaos; no government services or businesses are functioning and nomadic groups of mostly naked blind people wander through the streets, squatting in abandoned houses and shops for shelter and taking food where they can find it—including in rubbish heaps. There is no electricity or running water, so the streets and buildings of the city are as filthy as the asylum was. Dogs that people used to keep as pets have gone wild and roam in packs, feeding on refuse and human corpses. The home of the doctor and his wife, however, is intact, and their group sets up residence there. The movie ends just as they regain their sight—as suddenly and mysteriously as they lost it.

Q: Have you seen the film?
A: Yes. Members of the National Federation of the Blind were permitted to screen the film. Many other members of the National Federation of the Blind have read the novel, and according to the filmmakers themselves, the movie is “true to the book.”

Q: How will this film harm blind people?
A: Blind people already suffer from irrational prejudice based on ignorance and misconceptions about our capabilities and characteristics. This prejudice–which is based on ignorance and low expectations but is no less harmful than prejudice based on ethnicity, religion, or sex–-is the cause of the overwhelming majority of problems experienced by blind people, including an unemployment rate that exceeds 70 percent and the lack of proper education for blind children. This movie will further entrench myths and misconceptions about blindness and blind people, thereby contributing to the barriers to equal participation in society that we face.

Q: What is wrong with the way blind people are portrayed in the film?
A: Blindness falsely depicts blind people as incapable of almost everything. Even accepting that most of the characters are newly blind and thus have not learned certain skills needed to function effectively as a blind person, their complete and utter incompetence is simply not credible to anyone who has had even casual contact with actual blind people. The blind people in the film are unable to dress or bathe themselves; they usually go about naked or nearly naked and relieve themselves on the floor or in their own beds. The doctor’s wife is shown helping him dress by holding his pants so that he can step into them, and he comments at one point that she even has to clean him after he has defecated.

In reality, even newly blinded individuals do not experience this level of incapacity; they do not forget how to dress, wash, or use the toilet. The blind people in the movie are portrayed as perpetually disoriented and having no sense of direction or ability to remember the route from one place to another. However, blind people regularly travel independently using white canes or guide dogs. The blind people who are not completely helpless in the novel and movie are depraved monsters, withholding food from the others in exchange for money, jewelry, and sex. One of the worst of these criminals is a man who was born blind and has adapted to his blindness, yet he sides with the criminal gang of ward three, participating in brutal rapes and attempting to kill inmates from the other wards. Thus, all of the blind people in the film are portrayed either as helpless invalids or degenerate criminals. The movie suggests that blindness completely alters the human personality, resulting either in total incapacity or villainous evil.

The movie also makes it clear that blindness is cause for complete and irreversible despair; one blind man comments, “I’d rather die than stay like this.” Blind people, in fact, do live happy lives once they have learned to accept their blindness and adjust to it. The movie also suggests that the blind must always defer to the sighted; when the doctor’s wife leaves him outside a supermarket so she can attempt to find food, he says, “I know my place.” The dignity, worth, and individuality of blind people is constantly denigrated in this way throughout the movie.

The National Federation of the Blind objects to this portrayal of the blind because it simply isn’t accurate. Blind people are a cross-section of society who happen to share the physical characteristic of being unable to see. The blind are employed in almost every profession imaginable, have homes and families, raise children, do volunteer work in their communities, and generally lead normal, productive lives. To the extent this is not the case, the problem is not blindness itself, but rather the misconceptions and stereotypes that society holds about blindness and blind people. This film will further those myths and misconceptions and deepen public prejudice against the blind. Most members of the public do not know a blind person and may therefore assume that this portrayal of blindness is accurate and true. It is not, and the falsehoods in this film will damage the prospects for equal opportunity, productivity, dignity, and happiness for blind people throughout the world.

Q: Isn’t this just a matter of political correctness, or a difference of opinion with the novelist and filmmakers?
A: No. Everyone is entitled to his or her own opinion, but not his or her own facts. If an artist were to create a painting called “Elephant,” but the picture in fact represented a giraffe, a camel, or a creature from the artist’s own imagination, then any art critic–or any layman–would point out that the picture does not, in fact, represent an elephant. The person pointing out the inconsistency would not be accused of “political correctness” or a “difference of opinion” with the artist, but would be recognized as having good common sense. The portrait of blind people in this movie is simply wrong; artistic license does not permit a writer or a filmmaker to make false assertions about an entire group of people. The stereotyping of blind people is just as inappropriate as the stereotyping of African-Americans, women, Hispanics, or any other group of individuals who share common characteristics.

Q: Isn’t blindness being used as a metaphor in the novel and film?
A: Yes, and this is one of the movie’s main problems. Blindness is simply the physical characteristic of being unable to perceive things with the eyes, but the author and filmmakers want it to be a metaphor for everything that is bad about human nature. At the very least, blindness in this movie represents lack of insight or perception; arguably it represents even worse traits, since many of the blind characters engage in rape, murder, and other forms of criminal behavior. Blind people, however, are not inherently obtuse or incapable of discernment. Although we cannot see with our eyes, we are aware of the world around us through our other senses and through the alternative techniques we use to learn about our environment, such as traveling with a white cane, reading and writing Braille, and using technology.

Blindness is no more an appropriate “metaphor” than other physical characteristics, like hair color or ethnicity. Movies in which all of the villains have dark skin or a foreign accent are rightly criticized as employing racial stereotypes. If a movie were to be made in which people’s hair suddenly turned blonde and all of the characters with blonde hair were vapid idiots, then people with blonde hair would rightly be outraged. In today’s society, it should likewise be unacceptable for blindness to be used as a stand-in for depravity, incompetence, and lack of understanding.

Q: Doesn’t your protest violate the First Amendment rights of the filmmakers?
A: No. The First Amendment protects the production and screening of this film, but it also protects our right to protest its production and screening and to tell the public that it portrays blind people in an outrageously false manner.

Q: Have you brought your concerns to the attention of the filmmakers?
A: Yes. We sent letters to officials involved with the production asking to meet and discuss our concerns but they refused to respond.