Sunday, March 30, 2008

My Personal Goals for Justice for All

by Marlene Chait, Ed.D
Marlene Chait is an active disability rights advocate.

I think of myself as one person act believing that the United States of America (USA) needs to throw the baby out with the bath water. The baby I am referring to is the United States’ endless fragmented disability service-delivery system that seems to disable individuals and their loved ones more than the disability, impairment or illness itself.

I’m eager to hear contenders who want to be President of the United States discuss the need to join the international community, embracing the human rights model and who will immediately sign the United Nations Convention on the Rights for Persons with Disabilities (UN CRPD). It is also my belief that it is time for the international community to recognize that just because a person with a disability lives in the USA does not mean they live interdependently in the community of their choice, with various community-based service (CBS) needs met, e.g., personal assistance services (PAS), accessible transportation, employment, and access to accessible housing, assistive technology (tools for independence) such as recreation, leisure and intimacy.

Yes, it is true the USA has done much in the area of disability legislation and giving poor disabled adults and children assistance. Yet, I do not understand why President Bush is not signing for the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). The UN CRPD is based on a Human Rights Model charging the world with total inclusion for all people with disabilities. The Americans with Disabilities Act (ADA) was an effort to “level the playing field” by mandating equal opportunity for those with disabilities in most areas of life (e.g., employment, recreation and access to buildings).

Unfortunately, the ADA fails to address one of the most basic human needs –sexual expression-leaving disabled people and disabled women in particular, with no avenue or guidance for accommodating this aspect of their identity. Countering this omission has required individual courage and political will by disabled women in order for them to speak truthfully of their life experiences. A labyrinth of problems exists that centers on PAS, sexuality education and sexual expression.

Unlike Sweden and other countries, the United States does not have an all-inclusive comprehensive and national community-based PAS. Despite the maze of federal, state, local for private and non-profit agencies, and independent living center organizations that administer a wide array of PAS programs many disabled individuals and older Americans want the freedom and control of living independently in their own communities as well as hiring their own personal assistants (PA). Yet, many physically disabled people are simply not poor enough to qualify for federal government PAS programs or rich enough to afford PAS without government assistance.

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For 115 years, Cotting School has helped disabled children

It's 1901, and an 11-year-old boy, born without hands, is staring into the lens of a camera. Today, looking at the sepia-tone photograph that recorded the moment, it seems the boy's tall wooden chair and dark breeches are primitive and inadequate to the task of preparing him for the 20th century.

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Then one notices the flat board and piece of paper at the boy's feet. He is holding a pencil in his toes. Frank Gardello is writing. The caption reveals more: "I am learning to use the typewriter with my toes," he wrote 107 years ago. "I can play football, play on a little toy piano, and can ride a bicycle."

Readers will be able to learn more about Gardello and hundreds of other disabled children like him next month when Arcadia Publishing, a South Carolina-based firm that sells popular local histories featuring vintage photographs, releases a 128-page volume about the Cotting School in Lexington.

Founded in Boston in 1893, the day school for disabled children is considered the first of its kind in the country. That alone makes it worthy of a book dedicated to its past, said authors David Manzo, the school's president, and Elizabeth Peters, its director of development.

But Manzo and Peters said they collected hundreds of photos, scoured archives in Massachusetts and New Hampshire, and pored over years of annual reports not only to memorialize the school, but also to pay respect to the students and teachers who walked its halls over the past 115 years. A lot of prejudice, doubt, and physical impairment have been overcome in that time, they said.

"We as a school helped change attitudes toward kids with disabilities," said Manzo.

At the same time, in the process of focusing on Cotting, Manzo and Peters realized they were also writing about the history of disability and education in America, as well as the history of philanthropy in Massachusetts.

"There are a lot of subhistories being told here," said Manzo. "For someone who is a physical therapist, this is telling the history of their profession. Someone who is a nurse who works with special needs children can look at this and see the history of nursing with special needs children."

Teachers might be surprised to see photos showing a class held on the school's roof in the winter of 1912, for example. Educators at the time thought children, whether they were disabled or not, should breathe as much fresh air as possible, according to Manzo. The students are sitting at desks with blankets draped over them.

Boston's elite families are also covered. At its inception, seven students received instruction at The Industrial School for Crippled and Deformed Children, as Cotting was originally named, according to a draft copy of the book. Classes were held in the basement of an Episcopal church on Chambers Street in Boston.

By 1903, thanks to a $150,000 fund-raising campaign that involved prominent figures such as Isabella Stewart Gardner, the school built its own state-of-the-art building on St. Botolph Street, the draft says. Trustees including former Raytheon president Charles Adams oversaw the school's move in 1987 to a 14-acre campus on Concord Avenue in Lexington.

"There were these tremendous pillars of society in Boston who cared about people no one cared about," said Manzo. "They were thinking about an endowment when they were just starting."

The school now serves about 130 day students, ages 3 to 22, from Massachusetts and southern New Hampshire on a budget of around $10 million a year, said Manzo. The average annual cost of teaching a child is $53,000, he said. Much of those costs are paid by local school districts that lack proper facilities to educate children with special needs.

The book, titled simply "Cotting School," illustrates the bittersweetness of children with disabilities. Photos depicting students devouring turkey dinners at Thanksgiving in the early 20th century show how the youngsters led normal lives, even with crutches propped up behind their chairs.

Others photos are unsettling. A 1898 image shows a teenager whose back was broken by a horsecar when he was 8. He sits in a long box with wheels, his body severely misshapen.

A central focus of the book is how the Cotting School evolved as society's definitions of disabilities changed. Its first students were mostly children with birth defects or those permanently injured in industrial accidents, Manzo said. They were taught academic lessons and trades like sewing and woodworking.

By the 1950s, polio was by far the most common disability among Cotting students, said Jim Tanner, a 1969 Cotting graduate with cerebral palsy who is now director of the school's vocational programs. After polio vaccinations started in 1955, the school gradually became more of a prep school for children with a range of less complicated disabilities. Many of those students went to college, said Tanner.

Now, as science has cured some diseases, created treatments that allow more disabled students to attend regular schools, and saved the lives of children born with birth defects once considered fatal, Cotting tends to accept children who need significant medical attention and physical therapy for conditions such as muscular dystrophy and Down syndrome.

Many of those children can't walk or communicate without electric wheelchairs or special computers. "Now we're trying to find jobs for kids who are really challenged," said Tanner.

Yet aspects of the school's curriculum haven't changed. Woodworking is still taught. Art classes are still used as a mechanism to develop disabled children's dexterity and understanding of visual imagery. "For math skills, we do lots of things with patterns of shapes," said teacher Rosanne Trolan.

Meg Comeau, a Burlington resident whose 20-year-old daughter has attended Cotting for 12 years, said the school's best asset is that it does not make disabled children feel like outcasts.

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Comeau's daughter has Prader-Willi syndrome, a disorder that can include mental impairment, poor muscle tone, and scoliosis. Her daughter attended a regular school through second grade, she said, until the young girl started feeling excluded from the life of her healthy peers.

"When people started reading, she didn't," said Comeau. "When kids ran to the playground at recess to climb the jungle gym and she couldn't, she knew that. It was very difficult for her. If you could call a second-grader depressed, you could call her that at the time. Now she sort of feels that, at Cotting, she's just one of the gang."

Evelyn, a 19-year-old Cotting student with cerebral palsy, said camaraderie was an essential part of her education. "I like it here because there are a lot of kids with disabilities," she said. "It lets me know I'm not the only one."

School officials asked that Evelyn's last name be kept private.

Arcadia spokeswoman Lynn Ruggieri said the $20 book will be widely available throughout the Boston area in a few months. She said the publisher's histories have gained popularity over the years because they target specific audiences who leap at a chance to purchase an easy-to-read paperback about their town or school that is often written by a local author. "Our markets are very local niche markets," she said.

Massachusetts has one of the highest concentrations of Arcadia local histories in the country, according to the company's website. "The Boston area is a huge market for us," said Ruggieri. "I think the biggest reason is that it's so historically rich. People are very passionate about history there."

Manzo and Peters said they were inspired to organize photos and write the book in part because Arcadia already published a similar history of the Perkins School for the Blind in Watertown, considered the first in the United States when it was founded in 1829. Cotting had its own story, and Manzo and Peters said they were determined to tell it.

"I had seen Arcadia's books," Manzo said. "And I knew Cotting had a treasure trove of photographs. I feel it is our responsibility as the first school in the nation to share what we've learned with others."
Source: The Boston Globe

Surprise fair promotes services available to disabled

Surprise is hosting its first-ever Human Services and Disability Fair to promote all the programs that exist in the area that benefit disabled residents.

There are many programs that residents may be unfamiliar with, and the intent is to bring all of them together in one place, city disability advocate Nanette Bowles said.

"There is more in Surprise now than there ever has been," she said.






The free event will take place from 1 to 4:30 p.m. on April 7 at the Northwest Regional Library, 16089 N. Bullard Ave.

The event will include information about the city's Disability Advisory Commission, a citizen's group appointed by the City Council and tasked with finding ways to make Surprise more accessible for those with disabilities.

City staff also will help residents through the first steps of finding support groups, finding employment or signing up for programs such as Dial-a-Ride or St. Mary's Food Bank.

Other groups on hand will include: American Cancer Society, Area Agency on Aging, Arizona Commission for the Deaf & Hard of Hearing, Arizona Council for the Blind and Visually Impaired, and the Division on Developmental Disabilities.

For more information: 623-222-1651.
Source: Az central

Disabled protest in Paris for increased aid

More than 16,000 disabled people, many in wheelchairs, protested in Paris on Saturday to press for increased government aid.

Up to 100 organizations around France joined together to demand a pension equivalent to the minimum wage, €1,280 (US$2,010). The disabled currently receive less than half that, €628 (US$986).

Protesters came to Paris by train, bus or specially equipped vehicles to march on the city's Right Bank. A delegation later delivered a petition supported by tens of thousands to President Nicolas Sarkozy.

The French "imagine that everything is done in this country for the handicapped, (but) it's not true," said Jean-Marie Barbier, head of the Association of the Paralyzed of France.

A second protest march Saturday of retirees angry over an additional year being added to social security payments, to make it 41 years to receive a full pension, drew less than 5,000 people.

The Associated Press