Tuesday, September 30, 2008

National Federation of the Blind resolution against the movie "Blindness"

From the National Federation of the Blind in 2007:

RESOLUTION 2007-09 Regarding a Screenplay Called Blindness

WHEREAS, the book entitled Blindness, by Jose Saramago, has now been adapted as a screenplay to be directed by Fernando Meirelles, the filming beginning this summer with an anticipated release of next spring; and

WHEREAS, the plot of the book perpetuates society’s fears and misconceptions of blindness in the worst possible manner: the premise of the novel is that an epidemic of blindness is sweeping through a city; the blindness is extremely contagious, though it is unclear exactly how it is transmitted; the people simply, very suddenly, become blind; the blindness is described as a white "sea of milk" known by some as "the white evil" the blind are placed in an abandoned medical facility gated and guarded by armed military personnel to limit their contact with the populace; and

WHEREAS, the book depicts blindness as tragic and hopeless: “If I have to stay like this, I'd rather be dead”; and

WHEREAS, the story involves explicit images of those confined losing all civility—stealing from one another; relieving themselves in hallways and other public areas; using extortion to secure food and sex; committing adultery and murder; and engaging in repeated gang rapes, all of which is graphically detailed; and

WHEREAS, the characters are further dehumanized by not having any names and are repeatedly alluded to as like animals: “It was too funny for words, some of the blind internees advancing on all fours, their faces practically touching the ground as if they were pigs”; and

WHEREAS, Saramago’s book includes countless stereotypes about blindness such as: “They had not been without their sight long enough for their sense of hearing to have become keener than normal”; and

WHEREAS, the only person who does not become blind is the caretaker for a small group of people who are described as better off than the others since they have someone with sight to fend for them; and

WHEREAS, numerous passages discuss the presence and smell of human waste, furthering the degradation of the blind characters—“It was not just the fetid smell that came from the lavatories in gusts that made you want to throw up, it was also the accumulated body odor of two hundred and fifty people whose bodies were steeped in their own sweat, who were neither able nor knew how to wash themselves, who wore clothes that got filthier by the day, who slept in beds where they had frequently defecated”; and

WHEREAS, reviews of the book confirm the destructive consequence of this unfortunate work with comments such as: “The novel Blindness really illustrates the difference between sighted and non-sighted,” and “Hard to know what to make of it. Are we better off learning to live with our blindness or glorying in what little we can see?”; and

WHEREAS, the presumed primacy of sight is further emphasized by comments of reviewers: “The doctor's wife somehow remains sighted, and she is able to give this small group the advantages that allow it to survive when others could not,” and “She alone seems to understand the true scope of what is happening in the story, and she alone sees the full scale of the horror that occurs”: Now, therefore,

BE IT RESOLVED by the National Federation of the Blind in Convention assembled this sixth day of July, 2007, in the city of Atlanta, Georgia, that this organization condemn and deplore the negative, damaging, distorted description of blindness and blind people contained in the novel, Blindness by Jose Saramago, for playing on society’s fears and deepening prejudice against the blind, leading to lost opportunities in employment and social acceptance; and

BE IT FURTHER RESOLVED that this organization urge Fernando Meirelles, director of the screen adaptation of Blindness to abandon filming in order to limit the damage this misguided novel has already caused; and

BE IT FURTHER RESOLVED that this organization use every means at its disposal to bring to the attention of the film’s financial supporters the serious harm that would result from demeaning and degrading blind people in such an irresponsible manner and urge them to withdraw their support of the project.

Will the movie "Blindness" spur protests?

A comment on the blog of Wise Advice says that the National Federation of the Blind in Colorado is going to protest the film, "Blindness," which opens Oct. 3. The film stars Julianne Moore, Mark Ruffalo and Danny Glover (pictured).

The Sundance Channel aired a documentary about the making of "Blindness" called "A Vision of Blindness" Sept. 29. Part of the documentary focused on how they trained all the extras to "act blind." Although I understand that they did need some sighted extras to show their transition to blindness, I think it would have enhanced the film if they had asked blind people to work as some of the 700 extras they needed for the film.

Canadian acting coach Christian Duurvoort, who served as the "blindness coach" on the film, said in the documentary that in training the extras he was "trying to get away from the traumatic idea of being blind because a lot of people who are blind are adapted, are happy. In our movie these people won't be happy with it."

The LA Times blog wrote about the production of the film in January and how they trained all the extras to "play blind."

For the crew and cast, which includes roughly 700 extras, making “Blindness” was alternately frightening, draining and exhilarating. That was especially true of training to act “blind,” says Christian Duurvoort, an actor who coached his colleagues in a series of workshops.

First, Duurvoort says, he did research by interviewing blind people, learning how they use their other senses to orient themselves in space and how they perceive the world around them. He then experimented by blindfolding himself.

“I went to a park, I bumped into trees, I fell into holes, I got very irritated. I learned a lot of things about me I didn’t like,” he says, laughing.

Just as important as understanding the physical mechanics of being blind, Duurvoort says, was helping the actors deal with “the emotional state, the psychological state, being vulnerable.”

Meirelles had emphasized that he wanted the extras to seem like desperate, traumatized human beings, not B-movie zombies.

Practically everyone working on the film donned a blindfold at some point, even the producers and the director. Meirelles says the experience brought him to “a state of peace.” But other crew members panicked.

In one exercise, the main actors were blindfolded and told to follow the sound of a bell. Ruffalo particularly had trouble and kept wandering around getting more and more lost. During shooting, in addition to a thick makeup layer to make him appear older, Ruffalo wore special contact lenses that rendered him blind, though his eyes were open.

“At first it’s terrifying and then it’s frustrating and then it gets quiet,” says Ruffalo during a break from shooting. “We’re tormented by our eyesight. A beautiful girl walks by, cars, clothes, terrible things on television. We’re tormented by our eyes. You don’t know this until you go blind…. As an actor I suddenly felt free.”

Specialty gym for people with disabilties opens in Orange County, Calif.

This was mentioned in a Forbes article on the trend toward "niche" market health clubs and gyms:

At the other end of the spectrum is the groundbreaking new Orange County, Calif.-based Goodwill Fitness Center, a gym designed for people with disabilities and chronic diseases. The $7.5 million, 12,000-square-foot facility, which already has 100 members and aims to serve 500, looks to improve people's health without feeling like a medical environment, says Elizabeth Toumajiian, the facility's manager.

Designed (for free) by architect Michael Garvey, who consulted on plans for the Las Vegas Bellagio Hotel, the gym's disabled-friendly equipment is spaced so people in wheelchairs can maneuver between pieces. Mirrors are scarce, since body image isn't the primary focus, but there are also free weights and a yoga studio.

Members work with physical therapists and certified personal trainers to lose weight for a hip replacement, increase their strength to cope with multiple sclerosis or exercise to get off of their diabetes medications. They also can access a technology resource center located upstairs and--a major plus--don't have to worry about being stared at, says Nancy Quarles, vice president of human services for Goodwill of Orange County.

"People like to look at things that are different," says Quarles, who has been wheelchair bound since injuring her spinal cord 40 years ago. "That can be unfortunate for people who are physically disabled."

U.S. House passes bills about breast cancer, Down syndrome

From Congressional Quarterly as reported in Medical News Today:

The House on Sept. 25 passed two bills that would improve hospital care for breast cancer patients and increase research into the environmental causes of the disease, CQ Today reports. The breast cancer bill (HR 758), which passed 421-2, would prevent both individual and group health insurance plans from limiting hospital stays for women who have undergone mastectomies or lumpectomies to less than 48 hours, or 24 hours for women who have had a lymph node dissection, unless a physician determines a shorter stay is medically appropriate.

Twenty states currently require coverage for minimal hospital stays following a mastectomy. The measure now heads to the Senate, where a companion bill (S 459) has 19 co-sponsors. A Republican aide in the Senate said that the bill was unlikely to clear the chamber this week because some senators want more time to study the issue.

The House on Thursday also passed legislation (HR 1157) by voice vote that would authorize $40 million in additional annual spending through fiscal year 2012 to the NIH for breast cancer research-related activities. Although the bill does not instruct the agency to perform specific research, it aims to encourage studies on the relationship between breast cancer and the environment, which, according to the measure's supporters, is not well understood.

According to CQ Today, the bill also would establish an Interagency Breast Cancer and Environmental Research Coordinating Committee within HHS. The committee would be staffed by breast cancer advocates, as well as members of scientific and medical communities, and would make recommendations and solicit proposals for breast cancer research. A Senate companion bill (S 579) with 70 cosponsors is expected to clear the chamber later this week, CQ Today reports (Demirjian, CQ Today, 9/25).

The House passed a bill (S 1810) by voice vote that would require physicians to provide information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. The bill now heads to President Bush, who is expected to sign the measure (Wayne, CQ Today, 9/25).

Older disabled vets face medical care delays because VA overwhelmed with newly disabled vets

From The Buffalo News in New York Sept. 30:

Delonne J. Scharf (pictured) has lost a lot in his service to the United States.

Now the 64-year-old disabled Vietnam War-era veteran from West Valley may face life-or-death consequences because the Department of Veterans Affairs health care system, he says, is overwhelmed by returning veterans from Iraq and Afghanistan.

“I want other veterans to know what I have gone through. Maybe it will help someone else,” said Scharf, who Thursday finally won a battle to have the VA pay for follow-up cancer surgery and tests at Roswell Park Cancer Institute.

In two weeks, when the procedures are performed, he says, he will know for sure whether his cancer has spread.

Scharf said that Veterans Affairs Medical Center in Buffalo imposed repeated delays in providing him care and that he never once saw a VA cancer specialist after he first complained of a lump below his right ankle in May.

His story of delays is a familiar one, according to the Disabled American Veterans, a Washington, D. C., veterans advocacy group. “It sounds like Mr. Scharf has been caught up in the funding system,” said Thom Wilborn, an official of the group, explaining that toward the end of the federal fiscal year in September, medical procedures and referrals are sometimes delayed.

“Without Congress’ approval of a funding plan, the VA is forced to reduce its health care services,” Wilborn said.

Although Scharf signed and hand-delivered a release authorizing the VA to respond to his complaints, VA spokeswoman Evangeline E. Conley on Friday declined to discuss his situation, explaining that it has been the VA’s long-standing policy to refrain from publicly discussing patient cases.

Scharf said he found himself in unfamiliar territory when the VA began delaying his treatment. For decades since the Air Force veteran lost his right eye and sense of smell in a service-related motorcycle accident in Spain, he said, the VA provided him excellent health care.

“They have great doctors, but they’re overcrowded,” Scharf said of the increased workload the VA faces with newly returning wounded veterans.

According to the military, an estimated 33,000 service members have suffered injuries, and thousands of them have filtered into VA hospitals across the country.

It’s an increase that local VA officials have acknowledged when announcing ways to improve keeping up with the demand for services. For Scharf, the increase hit home when he was told that the soonest he could receive an MRI was in late July.

The scan, he said, determined that surgery was needed. That was scheduled for about two months later. Scharf and his wife, Patricia, began complaining.

“I asked them why they couldn’t get me in sooner, and they said they were filled right up,” Scharf said.

A VA doctor in Buffalo, he said, confided to him that if Scharf were a patient in his private practice, care would be delivered a lot faster.

Scharf’s complaints about delays appear to be confirmed by copies of his medical records he provided to The Buffalo News. A July 31 report from Dr. Bhaskar Bhattacharyya states: “[Scharf] is strongly adamant about having it removed ASAP, however it was explained to the patient that availability is an issue for podiatric surgery. Given that fact, patient will be sent to Dr. [Mark] Finkelstein to see if surgery schedule can be accommodated for patient.”

Patricia Scharf said VA doctors explained to her “that we have some [patients] who are more serious than your husband, and we have to see them first.”

But the complaining cut the wait for surgery. On Aug. 15, a VA surgeon removed a tangerine- size section from Delonne Scharf’s right foot. A body scan was then scheduled for five weeks later to determine whether the cancer had gone into his lymph nodes.

That’s when the husband and wife, frustrated at more waiting, began seeking a VA referral to Roswell Park.

Patricia Scharf said the referral was denied because of the costs.

“I said they have doctors at Roswell and that’s all they do is treat melanoma,” she said. “The VA doctor told me he didn’t think we could get a referral because it would cost the VA thousands of dollars.”

Desperate, they went to Roswell Park anyway, as Delonne Scharf’s health began to slip. He said he lost 30 pounds, was sleeping all the time and was filled with anxiety. His relatives, seeking help, sent out e-mails and posted messages on an Internet site. The Scharfs also kept calling the VA.

Thursday, the pressure paid off. “I’m doing a whole lot better,” Scharf said. “The VA just called and told me they’re giving me the referral.”

Friday, he was at Roswell Park getting preoperative tests.

He says he won’t know for sure whether he is cancer-free until he undergoes the additional surgery in two weeks, but whatever happens, he wants to let the public know how he was treated by the VA.

His hope, he says, is that other veterans with serious illnesses are not forced to accept what he believes is government-rationed health care.

“They can spend the money over in Iraq,” Scharf said, “but they can’t spend the money to help the veterans. My story may help somebody down the line by getting priorities straight.”

Monday, September 29, 2008

Got Autism? New billboard from PETA connects autism, milk

From Newsday Sept. 29. I can't find a picture of the billboard, but the PETA Web site runs a "milk sucks" Web site, from which this picture was taken, and it mentions autism as being linked to milk consumption.
NEWARK, N.J. - The animal-rights group People for the Ethical Treatment of Animals (PETA) has put up a billboard in Newark claiming there is a link between cow's milk and autism.

The group says the billboard shows a bowl of milk and cereal with the tagline "Got Autism?" in imitation of the "Got Milk?" campaign.

The sign also claims that studies have shown a link between cow's milk and autism. The group cites two European studies that link autism to milk consumption and show a link between dairy-free diets and improved autism symptoms.

PETA says it chose to put the billboard by Newark's Prudential Center because a study by the Centers for Disease Control and Prevention says the city's metropolitan area has one of the highest rates of autism in the country.

The CDC says they have not conducted any studies examining autism and milk.

Mass AG, NFB secure agreement from iTunes to become more accessible

From The Boston Globe:

After a gentle nudge from Massachusetts Attorney General Martha Coakley, Apple Inc. is redesigning its popular iTunes music software to make it easier for blind people to use.

"Blind residents seek to live independently and be active members of their communities," said Coakley, "and this agreement will help them do that."

The improved version of iTunes will make it easier for blind users to purchase music and movies online. But these days, iTunes is also a vital educational tool. Its iTunes U feature offers free downloads of lectures by faculty of major universities, including Northeastern University and the Massachusetts Institute of Technology. ITunes U lectures are used by schools and independent scholars around the world.

Officials at the National Federation of the Blind (NFB) worried that blind people were being left out. Blind students use "screen reader" programs that translate on-screen text into spoken words. Screen readers let users control the computer without having to read text or point and click with a mouse. But earlier versions of Apple's iTunes software won't work with screen readers, making it virtually impossible for blind people to use it.

The federation asked Coakley's office to intervene. Coakley said that by failing to make its software more accessible to blind people, Apple was violating the federal Americans with Disabilities Act, as well as the Massachusetts Equal Rights Act. But Coakley said that instead of threatening Apple, she suggested the company address the matter voluntarily. "They agreed to work with us on this," Coakley said. "We felt that this was one where we had a good argument, and Apple frankly agreed with us."

As a result, the newest version of Apple's iTunes software will work with popular screen reader programs. In addition, Apple will make its online iTunes U service fully accessible to blind people by Dec. 31, and its entire iTunes service by June 30. Apple will also donate $250,000 to the Massachusetts Commission for the Blind to buy software for blind citizens to help them better use their computers.

White House releases photos of ADA Amendments Act signing

The White House released this photo of President Bush signing the Americans with Disabilities Amendments Act in the Oval Office Sept. 25.

In the picture with President Bush are, from left: Former President George H.W. Bush, Republican Rep. James Sensenbrenner of Wisconsin and his spouse, Cheryl Sensenbrenner; Democratic Rep. Steny Hoyer of Maryland; Republican Rep. Buck McKeon of California; Democratic Rep. Jerry Nadler of New York; Senator Tom Harkin (D-Iowa); Senator Mike Enzi (R-Wyo.); Democratic Rep. Jim Langevin of Rhode Island, and U.S. Attorney General Michael Mukasey.

"Labeled Disabled" film receives more media coverage

I first wrote about this disability awareness documentary and curriculum by Massachusetts teacher Maggie Doben in May. The Boston Globe covered her work in August and now the Christian Science Monitor writes about her project.

In the picture, her students watch her documentary, "Labeled Disabled."

Doben says of her first grade class who are learning about disability and meeting many different people with disabilities: "Helping to answer their questions really does combat discriminatory behaviors. Children of 6 already have stereotypes ... but [they] are very apt to challenge those stereotypes and be able to turn their thinking around."

Service dogs trained to help disabled vets

From The San Francisco Chronicle:

Abelardo Rosas served two tours in Iraq and one in Afghanistan. He'd been hit by 13 improvised bombs, suffered head trauma and was diagnosed with severe post-traumatic stress disorder.

A couple of months ago, he barely spoke to anyone. He was sullen and surly and not responding to treatment at the PTSD clinic at the Veterans Affairs health center in Menlo Park.

Then he met Vegas (pictured), a sweet, good-natured golden retriever with a shiny coat and sad eyes. Rosas had volunteered to participate in a pilot program - veterans at the clinic would train canines to become assistance dogs to aid disabled veterans, those who had lost limbs or are confined to wheelchairs.

Something about the dog touched Rosas. He'd grown up with dogs; he has seven of his own back in Texas. He's the kind of guy who picks up strays from the side of the road. When he had to take care of Vegas, and learn to train him, his emotions re-emerged.

"He has a constant need for attention," Rosas said of Vegas. "You can't ignore him. All I want to do is hang out with Vegas."

Rosas is one of nine veterans at the clinic who have been learning to train the dogs as part of a program called "Paws for Purple Hearts." The program is the brainchild of Rick Yount, a trainer with the Assistance Dog Institute of Santa Rosa.

Yount has been involved with assistance dog training for years and had recently worked with at-risk youths who were given dogs to train for people with disabilities. He saw stories about veterans with PTSD, and those who have lost limbs. Why not develop a program in which veterans with PTSD would train assistance dogs, he thought? They would benefit from the emotional connection with a kind and loving animal while providing for veterans who need the assistance of a dog.

Yount proposed the idea to the Veterans Affairs department and eventually worked up a program involving veterans at the Menlo Park PTSD clinic. The program started in July, and so far, nine veterans have worked with the three dogs-in-training, Vegas, Venuto and Verde, who are brothers. Yount trains the veterans, using a combination of lectures and hands-on experience. As the dogs complete their training, they will be handed over to disabled veterans. Each dog needs about 1 1/2 years of training.

Yount said handling and training dogs is valuable in the treatment of PTSD because the animals help the veterans connect with their emotions. The dogs counteract feelings of isolation. They have to take the dogs out into the community, he said, and other people inevitably want to pet the dogs and talk to the person handling them.

"The dog also reinforces the need to assist someone else," he said. "This is important for a lot of veterans because most of them joined the military to help people."

Eventually, Yount said, he hopes to expand the program to other VA clinics.

The veterans spend about 12 hours a day taking care of the dogs and training them in a variety of tasks: how to open doors, turn on lights, pull wheelchairs, pick things up off the ground and serve as a brace for those times when the dog's guardian needs help getting up or back into a wheelchair.

Ryan Briones, who served two tours in Iraq in his four years in the Marines, volunteered for the program after he saw other veterans in the clinic working with them. He found the animals calming in ways that no person or therapy could.

"It's hard to explain, but just petting the dog is soothing," he said. "There's no anger there."

Chuck Marino, who served in Iraq with the Nevada National Guard, said training the dogs has taught him patience. Working with Vento, he would bark out orders to "sit" as if speaking to a stubborn private, and the faster he spoke, the more excited and less obedient Vento became. Yount showed him how to slow down, speak clearly to the dog, and be assertive without being aggressive.

"They're like teenagers," Marino said.

Richard Hagan, 57, of Palo Alto knows about the value of a service dog. He's a veteran of the war in Vietnam, having been a machine-gunner with the 101st Airborne Division and wounded twice. Now he uses a wheelchair because of multiple sclerosis.

He got his dog through a different program a couple of years ago. His dog is a sweet-natured black Labrador named Kovin.

Kovin is never far from Hagan's side. He appears to be a pet, but he's also ready for whatever Hagan needs.

He is also the only dog allowed into the traumatic brain injury clinic at the VA, said Hagan, who likes to take the dog there to provide some help to the injured veterans.

The dog represents some kind of normalcy, Hagan said. The veterans will hold pieces of kibble in their fingers, and Kovin will gently lick and nudge their hands until he gets the treat.

"It's that physical touch that means so much," Hagan said. "Kovin is a good dog, but he's more than just a service dog to me. He means so much more."

Social service agencies call for more funds for disabled Texans

From The Houston Chronicle:

AUSTIN — As pressure grows over systems that are failing to protect disabled Texans in institutionalized care and abused children in foster care, agency leaders are calling for a major infusion of new spending.

The social services budgetary requests for the 2010-11 fiscal years include salary increases for state employees in key positions, higher reimbursement rates for nursing homes and medical providers, and expanded mental health and substance abuse programs to divert low-level offenders from county jails.

"We have some critical needs in health and human services," said Albert Hawkins, executive commissioner of the Health and Human Services Commission. "And we're carrying those priorities forward in our legislative appropriations request."

Hawkins wants 10 percent raises for about 40,000 state employees. These workers do a variety of jobs, including caring for persons with mental illness or mental retardation, monitoring children who have been removed from their families because of abuse or neglect, and determining eligibility for safety net programs.

Turnover in many of those jobs ranges from 30 percent to 40 percent.

For example, annual starting salaries for direct care workers at state facilities for persons with mental retardation are between $20,500 and $23,600.

"I think with higher pay we can probably raise the quality of staff we are able to attract in those jobs. That results in better services to our clients and consumers," Hawkins said.

Rep. John Davis, R-Houston, said higher pay may be needed, although he would prefer merit raises to across-the-board pay hikes. He said that reducing turnover can save money in the long run because of the cost of training new workers.

"If we can increase those salaries and keep the higher retention, that's smart money," said Davis, who serves on the budget-writing House Appropriations Committee.

Hawkins also wants to increase rates for a variety of private providers, including doctors, foster parents, nursing homes and community group homes.

Raising state salaries and increasing provider rates will be costly, Hawkins said. His estimates are expected next month.

The needs are real, but with $3 billion in additional Medicaid costs expected over the next two-year budget cycle, it's unclear how many new initiatives will be funded next session.

Although lawmakers are expecting to enter the session next year with a budget surplus, social services — which accounts for about one-third of all state spending — will be competing with public education, higher education, corrections and transportation.

Last week the state Insurance Commission told lawmakers that about $800 million will be needed in the 2010-11 budget to cover losses from the state-backed windstorm insurance pool because of the tremendous damage to coastal property done by Hurricane Ike.

Lawmakers may be persuaded to boost social services spending by federal investigations and reviews.

The focus is on a U.S. Justice Department civil rights investigation into conditions at state facilities serving 4,800 persons with mental retardation. Last month, the 3-year-old federal probe was expanded from two institutions to the entire system of 11 state schools and two smaller state centers.

An earlier Justice Department report on Lubbock State School and newspaper reviews of employee discipline records at other facilities found disturbing patterns of abuse, neglect and exploitation.

Lawmakers have increased funding for community living options during the past two sessions, but waiting lists have remained stubbornly long because of population growth. This year, Hawkins is asking lawmakers to budget $474.4 million to increase capacity of community services.

Another area where the federal government is pressuring Texas to do better involves high caseloads that prevent child welfare workers from making monthly visits with children and parents. Texas paid a $4 million fine for insufficient caseworker visits stemming from a 2002 review, and preliminary results from a second review this year again found the state deficient.

To address the issue, Hawkins is asking for about 240 new caseworkers. He said that would help Texas meet federal standards that call for monthly face-to-face visits of 95 percent of children in custody of Child Protective Services and their parents.

Status of Ghana Disability Council uncertain

From AllAfrica.com:

Uncertainty still hangs over the status of the National Council on Persons with Disability (PWD). The disability community is unclear in their minds whether the purported meetings of the Council could be described as formal or otherwise.

Meeting in Accra on Thursday for the second time this year, members of the Disability Network could not accept that the supposed meetings of the Council were formal since it was yet to be inaugurated.

Even so, Miss Rita Kyeremaa Kusi, Executive Director of the Ghana Federation of the Disabled (GFD), informed the meeting that officials of the Ministry of Manpower, Youth and Employment saw the meetings of the council as formal.

At the previous meeting of the network in April, Ms Kusi was tasked to arrange a meeting between representatives of the network and the sector Minister, Hon. Nana Akomea.

The Persons with Disability Act (Act 715), 2006 required the establishment of the Council to give impetus to the implementation of the Disability Law. Initially, the disability community was concerned with the delayed constitution of the council.

But in June, during the observance of the Second National Day of the Disabled, PWDs learnt albeit with surprise that the Council was already in place and has been holding meetings.

" I am reliably informed that the Council has been formed and has started its operations," said Hon Paul Okoh, Chairman, Parliamentary Select Committee on Employment, Social Welfare and State Enterprises.

He however acknowledged, "Yes! The Council has not been inaugurated. However, due to its important role it has been given the nod to start its operations."

Hon Akosua Frema Osei Opare, Deputy Minister of Manpower, Youth and Employment confirmed that the council was in place and in fact has been organising meetings. She also confirmed that Prof. E. Gyimah Boadi was the Chairman of the Council.

At Thursday's meeting, Hon Yaw Ofori Debra, Vice President in charge of Advocacy, GFD, stirred a debate when he inquired about the status of the meetings of the council; whether formal or informal.

Mr. Alexander Tetteh, Administrator of the Ghana Society for the Physically Disabled (GSPD), said as long as the council was not inaugurated its meetings were unofficial.

Sonia Kwami of the Voluntary Services Overseas agreed with GSPD official. She tied the formalness of the meetings to the inauguration of the council.

Hon Okoh stated previously that the inauguration had not been done "because we want it to be done by the President."

Perhaps, still relevant is Mr. Ofori Debra's onetime observation that "the soul of the Disability Act resides in the Council."

Sunday, September 28, 2008

Wheelchair dancing takes off; "Dancing with the Stars" comes calling

From the intro to a story in The Philadelphia Inquirer Sept. 28:

Like many married couples looking for fun, Melinda and Stuart Kremer took ballroom dance lessons. Eventually their teenage daughter, Jenna, got the dancing bug.

Never mind that she used a wheelchair.

"It was one of the really exciting things she did in her life," said Melinda Kremer, who is as tiny as a young gymnast and lives in Bala Cynwyd. "It was a passion."

Today, Melinda Kremer is just as fervent about teaching others in wheelchairs to samba, cha-cha and hustle. Four years ago, she cofounded American DanceWheels Foundation with Ray Leight, a former dancing-is-for-sissies kind of guy who became paraplegic after a motorcycle accident in 1991. (They are pictured dancing.)

It was Jenna who brought them together about nine years ago. Leight had gone to the Schuylkill to row and saw Jenna with her dad, struggling to use a hand-cranked bicycle. Never shy about saying hello, he offered to help.

He became friends with the family. One day, Stuart Kremer invited him to a dance class. The instructor asked why Leight wasn't dancing.

"I thought she was visually disabled and couldn't see I was in a wheelchair," said Leight, who is funny and ambitious and believes he can do anything that an able-bodied person can do.

After she taught him a few moves, he and Melinda Kremer figured ballroom dancing was easily adaptable to wheelchairs. What they didn't know then was that it was already popular in Europe and Asia - 4,000 wheelchair users competed in the first international championship in Sweden in 1997 - and is now a Paralympic sport.

They came up with their own syllabus and spent hours working out the routines. Ballroom dance is about passion and personality. The duo had enough of both to win the first and only national wheelchair competition in the United States in 2002.

There are others teaching wheelchair ballroom around the country, but none with a written format or who have reached as many people as DanceWheels, according to Kremer. The group gives lessons at Crystal DanceSport in New Castle, Del., the Atrium Dance Studio in Pennsauken, and soon in Manayunk. They also teach at Widener Memorial School for disabled children in Philadelphia and at the University of Delaware, and have trained dance teachers throughout the country.

But their biggest coup came last week when - hold your breath - Dancing With the Stars called to inquire about a wheelchair competition. No one knows what, if anything, will come of it, but Kremer and Leight are keeping their fingers crossed.

Michigan man receives partial settlement from county for harrassment based on disability

From the Grand Rapids, Mich., Herald-Review:

Itasca County employee Mark Danielson will receive $50,000 of the $150,000 he sought in a federal discrimination lawsuit he filed against the county this spring. The settlement was approved by the county board on Sept. 23.
Diagnosed with a mental/learning disability since childhood, Danielson alleged harassment by 11 people, including law enforcement officers and other county employees.

Filing his case under the Americans with Disabilities Act, Danielson claimed the individuals created a hostile and offensive work environment based on his ability and testified that the offensive behavior included disgusting and lewd gestures and remarks as well as false allegations and insinuations about his sexual orientation.

According to Danielson’s complaint, the incidents occurred between June 2004 and March 2006. Several of the allegations included county employees or law enforcement making reference to Danielson as being gay, including sexually explicit actions, questions, and a voice mail message left on Danielson’s home phone.

Teen with Down syndrome elected HS Homecoming King

From the Great Falls Tribune in Montana:

CHOTEAU, Mont. — His fingertips grazing the ground, Jesse Campbell eyed the defensive lineman across from him, ready to pounce.

The 19-year-old senior is a proud Choteau Bulldog — and a huge football fan — but
until Friday night, he had never made it on the field.

Born with Down syndrome, Campbell isn't on the team. However, he had a chance to win a title of his own Friday — homecoming king.

When her son was born, Cathy Campbell cried, both in joy and shock. She and her husband, Joe, had no idea what Jesse's life would be like.

"I thought he'd never have friends. He'll never play football. He'll never go to prom. He's done all that," Cathy Campbell said.

Now in his senior year, Jesse Campbell spends half his day in school and the other half working either by helping clean the school or at Front Range Supply.

He studies math and English with other special-needs students, and is in choir and physical conditioning classes with the rest of his classmates.

Students can't help but see him as he collects attendance sheets and sells cookies and candy between morning classes at a shop he's named Campbell's Crunchies. He's also known for running down the halls to give friends a high five or a bear hug.

"He doesn't have a best friend — he's everybody's best friend," said Lorran Depner, his choir teacher since elementary school.

A few weeks ago, the names of all 22 seniors were placed on a ballot for the entire student body to pick their four favorite girls and boys to vie for homecoming royalty.

Few were surprised when Campbell's name made it to the top.

"He's been such a part of his class," senior class adviser Eva Anseth said. "We would have been disappointed if he wasn't a finalist."

While other students may drag themselves to the senior class meetings, or skip them entirely, Campbell is at every one — often early.

He also attends every home game for every sport, proudly wearing maroon and gold.

During his junior year, Campbell excitedly donned a jersey to pretend to be a football player on the class float.

This year, when others painted signs and stapled fluffy gauze to the winter-themed class float, he was too anxious to concentrate on that task.

Instead, he tossed a football around with the players.

The head football coach gave Campbell a maroon jersey to wear — his was number 59 — just like the other king candidates.

"He gives you high fives when you come off the field," fellow nominee Zach Birnel said. "He gives 110 percent on the sidelines. ... He smiles and he never has a bad attitude."

Birnel, a football and wrestling team captain and student council secretary/treasurer, normally would be a safe bet to be voted king. Maybe not this year.

"My money's on him," king nominee Robert DeBruycker said, nodding toward Campbell, who hung a step back and smiled shyly. "I voted for him."

Fellow nominee Ethan Haug didn't vote for himself either.

"If I won, I'd feel like a jerk because Campbell really deserves it," he said. "Everybody looks up to him. He's just fun to be with. Everybody considers him a friend."

When asked who he voted for, Campbell slyly looked both directions before pointing both thumbs at himself and grinning.

Principal Nate Achenbach said that during his tenure, other students with disabilities have been nominated for homecoming king, but none have won.

Usually, the teachers and staff don't talk too much about the contest, so as not to fuel competition or bad feelings. However, this week, few could stop speculating on who would win or whispering that Campbell was their favorite.

"I think everybody's pulling for him," Depner said. "He is so excited. Just to be out there is so exciting for him."

On Thursday night, Campbell strutted onto the court between volleyball games and received the loudest ovation when he was introduced.

"I never would have dreamed of this 19 years ago," Cathy Campbell said. "I'm one proud mom."

His older sister, Janelle, gave him a haircut and — to Campbell's chagrin — even waxed his eyebrows for the big day Friday, when the winner was announced at halftime of the football game.

After seeing his expectations build, Cathy chatted with her son after the volleyball games and bonfire to explain that he might not win.

"Oh boy," he said, his voice heaving with disappointment. Last spring, Campbell was crushed that he didn't win prom king, even though juniors aren't eligible to be nominated.

Campbell told his mom that if he lost, he would shake the winner's hand. Knowing him, there also would be a congratulatory hug or high five.

After a day of fanfare, including tug-of-war games in a mud pit, a parade and a barbecue, Campbell didn't have any reason to be let down.

He was voted king in a landslide.

"I have a great life," adult with Down syndrome tells doctors

From The Chicago Tribune Sept. 28:

Every few weeks, Angie Picchi, a 28-year-old with Down syndrome, and her mother, Linda, stand up before another group of doctors.

Together, they launch into what they refer to as "The Talk." Part public-relations push, part sensitivity training, the Picchis touch on the stereotypes and low expectations often associated with Down syndrome.

Then they flash pictures on a screen from Angie Picchi's life. Here she is dressed in a sparkling leotard, gliding across the ice at a skating rink. There she is piloting the family boat across a Midwestern lake.

At the end of the presentation, Linda Picchi asks her daughter, "Angie, are you sad you have Down syndrome?"

And Angie Picchi, a chatty young woman who fields questions on such subjects as bullying and boyfriends, replies with a smile: "No, Mom. I have a great life."

Meet Angie Picchi, nicknamed the "Myth Buster," an unofficial spokeswoman for one of the most aggressive campaigns in decades to change the public perception of Down syndrome. The effort, begun locally and nationally last year by advocacy groups, received a boost this month when Alaska Gov. Sarah Palin cradled her son Trig, a 5-month-old with Down syndrome, onstage at the Republican National Convention.

Palin's decision to give birth to a child with the genetic disorder has highlighted the heartbreaking limitations of science. Genetic counseling and screening can help a couple assess the chances they have conceived a child with Down syndrome; tests later in the pregnancy will reveal whether a fetus has the condition. But medicine cannot pinpoint what physical or mental abnormalities the child might have, or how severe the condition might be.

With so many unknowns, families say the decision to have a child with the disorder can feel like a leap of faith. Most women--studies report as many as 70 percent to 90 percent--terminate the pregnancy after learning they are carrying a fetus with the condition.

To be sure, life with Down syndrome can be far from easy. About 40 percent of children with the disorder are born with a heart defect. Many struggle with speech and life skills. Most will require lifelong support, an increasing challenge as parents age.

But many parents and advocacy groups think balance is sometimes lacking in the information couples receive during a diagnosis. Their campaign, they maintain, is not part of a debate about abortion--it is an attempt to tell prospective parents about the potential, not just the problems, of people with Down syndrome.

"None of us have a crystal ball. I can't promise you who your child might become," said Sheila Hebein, director of the National Association for Down Syndrome in Wilmette. Still, she said, "families want people to know that life with a child with Down syndrome is a good life."

Down syndrome is caused by an error in cell division and results in extra genetic material from chromosome 21 in some or all cells. It occurs in about 1 in every 800 live births. Children have a distinctive appearance, including a slightly flattened facial profile and physical and mental disabilities. The condition varies in severity, so developmental problems range from mild to serious.

Advancing maternal age has been identified as a risk factor, and women older than 35 have long been offered screening and diagnostic testing. But last year the American College of Obstetricians and Gynecologists, the national nonprofit medical organization that represents board-certified OBGYNs, recommended that doctors offer screening and--if a higher chance of Down syndrome is found--diagnostic testing to all pregnant women.

After the recommendation, parents and advocacy groups, anticipating an uptick in diagnoses, mobilized. The National Down Syndrome Congress in Atlanta launched a $600,000 awareness campaign. GiGi's Playhouse, a resource center in Hoffman Estates, rolled out a traveling photo exhibit. The National Down Syndrome Society in New York and the National Association for Down Syndrome expanded their programs that send families to talk to doctors.

Last week Congress approved the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which would require medical professionals to provide up-to-date information to parents who receive a diagnosis of Down syndrome or any other condition. President Bush is expected to sign the legislation.

"The push to educate the medical community and prospective parents is at an all-time high," said David Tolleson, director of the National Down Syndrome Congress. "There has never been a better time to be diagnosed with Down syndrome."

He cited increases in life expectancies, opportunities in the workplace and improvements in health care and education.

"But doctors and prospective parents don't always hear the good news," he said.

However, some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is "too rosy."

"Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said.

He says he doesn't tell women what to do, but he stressed that it is a doctor's responsibility to convey the serious health problems that accompany Down syndrome, including higher risks for leukemia, thyroid problems and, later in life, dementia.

"It is extremely difficult to have a baby with Down syndrome," he said.

When Michele Ptaszek, 38, of Naperville gave birth to a baby with Down syndrome six years ago, "the geneticist came into the room and said, 'Your son will never be capable of long division. He'll never drive a car, and he'll never be able to handle abstract thinking,' " Ptaszek recalled.

There were health hurdles, including heart surgery and hypothyroidism. Despite that, Vince Ptaszek, now 6, has entered the 1st grade, where he is in a regular classroom with the help of an aide. When he scores a goal on the soccer field, "he runs to me with the biggest smile and has his arms out wide," Michele Ptaszek said.

Families hope Palin will help raise awareness about the potential of people with Down syndrome.

But Nancy Goodfellow, 34, of Naperville, whose 5-year-old daughter, Lily, has Down syndrome, said, "If education is not done well, it could be harmful."

Goodfellow cringed at media reports that recently called the disorder an "affliction" and the raising of a child an "ordeal."

"I thought, 'Ordeal? My life is not an ordeal,' " she said. "There are more challenges raising a child with Down syndrome, but there are also significant joys."

Parents are writing letters and packing "Celebration" packets--complete with a plush animal--for families who have received recent diagnoses.

Michelle Pusatera of Chicago, who has a 22-month-old with the disorder, summed up the feelings of many: "Sometimes I almost want to scream it. 'These are great kids!' "

Don't dis their art abilities

The Gleaner in Jamaica has a report about a summer art exhibition by artists with intellectual disabilities there. Hosted by the Randolph Lopez School of Hope, which teaches children who are intellectually disabled, aged of six to 20, the art exhibition, "Don't Dis My Ability," showcased artwork by the school's students.

Marcel Goff, art teacher at the school for three years and one of the driving forces behind the art exhibition, explained that he recognised that exposure could open doors for the students.

In May 2007, the works of four students were entered in the annual Child Month Poster Competition. Two tied for third. "This was a great success because it was the first time children with intellectual disabilities were taking part and actually being awarded."

Following on that success, this year the school entered more students and the rewards were even greater. Andre McTyson received a first-place award and Nancy Parkes received another third placing following her similar placing in 2007.

"It was a great achievement in more ways than one, because they were competing with students from high schools, in their age group 15- 18. Andre was given two
semesters at the Edna Manley School for the Visual and Performing Arts, and it certainly helped with their confidence building," Goff explained.

As a result of the exhibition, Goff noted that more recognition was being given to students who engage in art expressions such as tie and dye, batik, papier-maché postcard making, scrap-material art, book-cover designing, painting in acrylic and water as well as clothing construction.

"The response has been overwhelming. People are saying the work is of a high standard ...," he noted.

Parkes said she relishes doing art as it helps free her mind from stress and gives her confidence.

"I didn't think I could do so well, but it's good to know that I can do something. My family is very proud of me."

Gushing with praise for her art teacher, Parkes said, "He taught us to do more than we can expect and not to back down from what we can do," she said.

Principal of the school, Christine Rodriguez, admitted that perhaps enough was not being done to publicise the students' achievements.

Executive director of the Jamaica Association for Mental Retardation, Joyce Duncan, explained that the exhibition was simply an outlet for the expressive talents of the intellectually challenged students. Goff, she said, has been able to hone the skills of the students.

"Regardless of the level of functioning, there are some budding artists that are just waiting for an opportunity to express their creative side," she said.

Miniature Earth drives home points about disability, global poverty

A video from Miniature Earth was selected "Best of YouTube" last week, and one of its first statistics is that 9% of the world is disabled. The concept of the video is to describe the characteristics of the Earth's people if only 100 existed.

Miniature Earth's Web site says: "The idea of reducing the world’s population to a community of only 100 people is very useful and important. It makes us easily understand the differences in the world."

It's a powerful video that succinctly tells all of us how rich and how poor the people of the world are.

First National Veterans Sports Clinic convenes in San Diego

From the San Diego Union-Tribune Sept. 27:

Former Camp Pendleton Marine Andy Robinson (pictured) is one of about 60 wounded combat veterans converging in San Diego County to run, row, bike and sail in the inaugural National Veterans Summer Sports Clinic.

The week-long event started Sept. 28 with the opening ceremony at SeaWorld, and then the athletes will fan out to five sites across the region for their public sessions.

The pilot program is based on research showing that athletics can help patients recover more effectively by encouraging them to socialize with others, work toward clear goals and feel a sense of accomplishment when those targets are met.

About a third of the participating veterans, whose injuries range from paralysis to post-traumatic stress disorder, live in San Diego County.

Robinson, who became paralyzed from the chest down after a roadside bomb in Iraq severed his spinal cord, is interested in the water sports – albeit with some trepidation.

“It's a little bit scary because I haven't been in the water since my injury. But I want to try new things to see what I can do,” said Robinson, 25, who was wounded on June 20, 2006. Three of his combat buddies died in the explosion.

Robinson said he gained inspiration from a patient he met while undergoing treatment at a Veterans Affairs hospital in Tampa, Fla. The man, paralyzed from the neck down, kept using his breath to blow puffs of air.

“I told the nurse, 'It would suck being him because he can't do anything.' She told me the guy sails a boat using little puffs of air,” Robinson said. “That's when I changed my idea about what guys with injuries were capable of doing.”

The Department of Veterans Affairs is spending about $153,000 on the sports clinic.
The organizers want to challenge veterans' bodies and minds to overcome damage caused by combat in Iraq, Afghanistan or elsewhere. They said the injured athletes aren't looking for competition as much as a spark to illuminate a new life.

The VA has sponsored adaptive and therapeutic sports programs since 1981, when it held its first wheelchair games for disabled veterans. The agency launched its winter sports clinic in 1987, but did not create a summertime counterpart until this year.

Today, VA athletic programs give about 1,800 disabled veterans per year the chance to learn or play various sports. These veterans have recently suffered amputations, traumatic brain injuries, serious burns, psychological trauma, visual impairment, spinal cord injuries and other disabilities.

VA officials chose San Diego County for the clinic because of the region's mild weather and array of sports locations. They will use sites such as the Mission Bay Yacht Club in San Diego and the U.S. Olympic Training Center in Chula Vista to offer training in sailing, kayaking, surfing, cycling, and track and field.

Dan Jones, local coordinator of the clinic, said he hopes people will turn out in large numbers to support the veterans.

“They are trying to get back into school and cope with their injuries and illness,” Jones said. “Through sports, they'll gain confidence and skills for success and a better quality of life.”

As a counterintelligence specialist in Iraq, Robinson was gathering information on insurgents who planted roadside bombs when one of those explosives blew up his Humvee.

The attack left him with broken legs and ribs, collapsed lungs and a fractured vertebra. He is paralyzed from the chest down, but can use his arms well enough to power a recumbent bike.

“I'm trying to push my new body to the limit . . . and do more then I ever would have before my injury,” Robinson wrote on his MySpace page. “I do it for the guys that didn't come home.”

Scottsdale school program creates an autism-inclusive recess

The intro to a story from The Arizona Republic Sept. 27:

It was Katy Donmoyer's habit to spend recess alone, circling the perimeter of her Scottsdale elementary playground.

Her sister, Leah, hovered silently near groups of playing children, who ignored her.
Earlier this week, however, the 9-year-old twins were taking turns jumping rope, even doubles, with classmates in the middle of Copper Ridge Elementary School's crowded and chaotic playground.

To behavioral scientists, the change is more evidence that their new strategy to help autistic kids fit into recess is working.

To the twins' mother, it is hope her daughters will have a social life despite a disorder marked by an inability to understand the give and take of conversation, play and making friends.

In January, Copper Ridge's playground became an incubator for a new kind of recess in which kids teach their autistic classmates about the joys of the playground. And autistic kids teach them a little compassion.

In the past nine years, as the number of Arizona schoolkids grew by 25 percent, the number diagnosed with autism grew fivefold. More than 5,000 autistic kids are in Arizona's K-12 schools. More schools across the country are training teachers and adding teaching assistants so more of these children can learn in a regular classroom.

But Copper Ridge is among the first to find ways for these children to successfully fit into the often-intimidating social mix of recess.

The program being refined on its playground will help create a blueprint for schools across the nation.

It has already attracted the attention of Scottsdale parents, who are increasingly seeking to enroll their autistic children in the school.

Parents are eager to make sure their autistic children do not end up like many: isolated by their peers, bullied and, as they get older, depressed.

"You see your child progressing academically," said Karen Donmoyer, the twins' mother. "But, more importantly, you realize: I want my child to be happy. I want my child to have friends. That was the piece that wasn't getting attention."

British mother who drowned her daughter with CP has history of mental illness

From The Guardian in the UK Sept. 27:

Everyone in court agreed that Joanne Hill had suffered from serious mental health problems for almost half her life, even the prosecution, who argued that she had known exactly what she was doing when she drowned four-year-old Naomi (pictured) in the bath last year.

The lawyers conceded Hill had previously suffered significant psychiatric episodes, and struggled to cope with her daughter's cerebral palsy, for which she held herself personally responsible.

At one point during the two-week trial the forensic psychiatrist called by the Crown as an expert witness - who testified that Hill's actions did not suggest a mental disorder at the time of the killing - admitted that she "certainly" seemed to be mentally ill in court, as she sat in the dock flanked by two nurses and a guard.

Every day of the hearing, in fact, she was brought to Chester crown court not from a cell in the local prison but from the Ty Llewellyn medium-secure hospital unit near Bangor, north Wales.

And yet on Tuesday the jury decided that Hill, who had been known to local mental health services in Connah's Quay, Flintshire, since she was 17 and had seen a child psychiatrist, had been in control of herself when she killed Naomi by holding her head under the water of a bubble-filled bath for up to 10 minutes last November. They decided the 32-year-old was not sufficiently mentally ill when she took her daughter's lifeless body from the bath, dried her off, dressed her in dungarees and lay her on the back seat of the car, then drove aimlessly for eight hours, stopping to buy wine and petrol before eventually taking her to the local hospital, long after anything could be done to save her.

Simon Hill, her husband, had testified in court, saying Joanne had had "very dark thoughts". He said she once suggested Naomi should be adopted and thought it was her fault the child had cerebral palsy. Joanne veered between having a good, "overpowering" relationship with Naomi, when she would buy her a lot of toys, and being "not so good" with her, he said. After the trial, he said that what his wife did to their daughter was "evil".

Hill's barrister, Stephen Riordan QC, said his client had an "abnormal, tortured mind". The jury did not agree. Unconvinced that Naomi's death was the consequence of Hill's illness, they rejected her defence of diminished responsibility and found her guilty of murder.

Elgan Edwards, the Recorder of Chester, jailed her for life and ordered that she was not to be released for 15 years. He described the situation as a tragedy for all concerned. He told her: "This has been a very sad case. Sad for you, your family, for your husband and his family, and tragic for the daughter you killed."

During the two-week trial the jury heard that Hill was ashamed of Naomi's condition; the little girl had to use callipers to help her walk.

It is a case which has stirred many emotions. In the Daily Mail Rosa Monckton, whose 13-year-old daughter has Down's syndrome, wrote: "It was unquestionably an evil act and she deserved to be punished but I cannot help feeling sympathy for her." Mary Dejevsky, writing in the Independent, said: "Society's expectations of women, inadequate care services, and an adversarial court system that magnifies vice and virtue could, and should, have been in the dock, too."

Speaking to the Guardian yesterday, a leading psychiatrist who examined Hill for three hours in August said that she had had complex psychological problems that defied easy categorisation.

Aideen O'Halloran, clinical director of the Orchard, a secure unit for women inmates from Broadmoor hospital, had told the court, as a witness for the defence, that Hill as
"suffering an abnormality of mind" when she killed Naomi. Yesterday she said that Hill's mental disorder meant she had not been "able or willing to open up about the extent of her difficulties".

That might be why Hill did not seek the help she needed. The disability charity Scope, which helps people with cerebral palsy, told the Guardian it had no record of Hill contacting it for support.

"Joanne Hill was quite a closed person, who appeared to struggle to access her emotions and consequently may not have made professionals aware of her needs," said the psychiatrist, who had told the court that Hill was in a "trance-like state" for much of their time together.

O'Halloran said the case revealed "the difficulties of trying to present an individual patient, with a serious level of mental disorder, to the courts, who does not fit neatly into a diagnostic category".

She added: "This case highlights the weaknesses of relying on categorical diagnostic systems, which require individuals to fit neatly into category or risk not having the disorder recognised by the court. It highlights the mismatch between the clinical context and judicial context.

"It is difficult to get across complex psychiatric/psychological problems in an adversarial arena, where complex shades of grey do not fit neatly with the black/white answers required."

Hill's legal team criticised much of the media coverage of the trial, which concentrated not on her mental health but on her "shame" over her daughter. Liam Ferris, her solicitor, said: "What was very disappointing to many of those who know the case well was the way in which parts of the media chose almost to ignore the complex and important psychiatric issues involved. This can only have left the public misinformed about its real nature."

Hill first showed signs of mental illness in the 1990s, when she was 17 and saw a child psychiatrist for anxiety. In 2000 she twice attempted suicide and throughout the year was prescribed drugs for anxiety, depression and sleeplessness. In January 2003, shortly before Naomi was born, Hill was diagnosed with chronic anxiety and in April had a "hypermanic" episode.

Naomi was born 10 weeks premature in a "difficult" birth in June. Almost immediately Hill suffered puerperal depression, a severe form of postnatal depression. She was treated by her local community health team; appearing to make a quick recovery, she was recommended for discharge from outpatient care in September. On Boxing Day 2006 she had a severe relapse and left the family home to be cared for by her parents. But she recovered and went back to work part-time in March and then full-time a month later. In June doctors decided there was no need for further involvement by the local mental health team and in August her case was closed, although she remained under the care of her GP and on several types of medication.

In November it was recorded that she was drinking heavily, increasing the risk of depression and the likelihood that she would stop taking her medicine. Later that month she killed Naomi. After the child's death North Wales NHS trust conducted an interim review looking at the care she had, and recommended improvements to policies. A spokesman said yesterday these had been implemented. A full review is being completed under the control of Flintshire local safeguarding children board.

Alice Maynard, chair of Scope, said: "This case raises the wider issue of how many disabled parents still don't get the support they need in bringing up children and how society continues to portray disability in a negative light, creating shame and stigma around impairment. Tragically, in this instance, this combination of factors proved lethal."

Deaf community educates during awareness month

September is Deaf Awareness Month and this article from The Free Press in Jacksonville, N.C., explains one woman's education efforts in Deep Run, N.C.:

DEEP RUN, N.C. - Deep Run's Heather Hardison (pictured) doesn't live in the "hearing world" like most of the people she encounters during her daily routine.

Hardison, 33, has lived in a "deaf world" - as she describes it - since she was born. Growing up, many of her elementary school classmates rejected her because she was different. Hardison has used her success story to educate and raise awareness of deaf issues in her Lenoir County community.

Nationwide, deaf and hard of hearing people still face challenges in their daily lives.
Hardison said she still gets awkward stares from the public when they first learn that she is deaf, but her husband, Cliff, offers support and assistance.

"I taught him how to use sign language," she said. "He helps interpret at our church."
As a Kinston native, Hardison attended a local elementary school in the early 1980s, where her grades were poor and her classmates ridiculed her for being deaf. She was taken out of the school at the age of seven.

Hardison began to excel after enrolling at the School for the Deaf in Wilson. Later she studied business administration at Pitt Community College. Today she resides in Deep Run with her family.

"I made it," Hardison said, regarding the challenges she faced as a deaf child. "I learned to speak with my hands and read lips."

September marks Deaf Awareness Month nationwide. The Wilson Regional Center for the Deaf and the Hard of Hearing hosted an event at East Carolina University on Thursday night. The event featured a Public Broadcasting System documentary "Through Deaf Eyes," which chronicled experiences of being deaf in America.

About 80 people attended the event at ECU, including Wilson Community College student Carolyn Bowens. Bowens is also a volunteer at the Wilson Regional Center and School for the Deaf in Wilson.

"My cousin is deaf," Bowens said. "I decided to enroll in Wilson Community College's interpreter program because I have always wanted to learn how to do sign language."

Today there are several communication aids that provide aid for the deaf population. Hardison uses a video phone to talk with her interpreter.

"It's like a three-way call," she said. "The interpreter asks the store clerk questions or tells them what I want for me when I sign."

Help is also on the way from the State Highway Patrol and from the Department of Social Services for the Deaf and Hard of Hearing, who are developing vehicle visor cards and wallet cards for deaf people.

"Sometimes there is confusion when police officers stop a deaf person and they can't communicate with each other," Hardison said. "The card will notify the officer the person stopped is deaf or hard of hearing."

Hardison plans to provide her sign language interpreting skills to First Baptist Church of Kinston next week. She will help sign for a children's class. However, more sign language interpreters are needed in Lenoir County, she said.

"Deaf awareness month has been very successful," Wilson Regional Center Manager Stephanie Johnson said. "We help people with varying degrees of hearing loss and support others like Heather Hardison who is building awareness."

The Wilson Regional Center provides deaf and hard of hearing people with both tangible and non-tangible services. Recently, the center began providing its customers with weather alert radios that have strobe lights and shake a sleeping person's bed to alert them to hazardous weather conditions.

"They will not sleep through bad weather," Johnson said.

Hiring people with disabilities should be part of business diversity initiatives

From the intro to The Toronto Star story Sept. 27:

The gourmet sandwiches are mounded elegantly, the conversation is low but intense, the dress strictly business. In a classy Bloor Street hotel, some 100 Ontario university students with disabilities are schmoozing with 50 corporate connections to high-power careers in finance, technology and human resources.

This is networking at its best.

As the group drifts into the adjacent room for a short panel discussion, only one person is missing. Rich Donovan (pictured), the 33-year-old Newmarket whiz kid who has taken Manhattan by storm, is stuck in traffic on his way from the airport. He arrives just in time to say a few words and, suddenly, if you ever had any doubts, you know how different this evening is going to be.

Donovan clearly has cerebral palsy. It is also abundantly clear that he couldn't be more comfortable in his own body. Striped shirt open casually at the neck, tailored jacket lying easily across his shoulders, the former Merrill Lynch trader and founder of not-for-profit employment specialist Lime Connect is out to do nothing less than rebrand disability.

The current brand, rooted in medical terms and do-gooder expressions of pity, "is so negative, it's radioactive," he tells his audience. "Nobody wants to come near it." The result is "a mainstream view that people with disabilities are unable to produce and must be cared for."

Lime's approach? "Simple," Donovan says. "Kill the current brand with quality." Get the message out that "people with disabilities can, and will, deliver."

For companies, he has a few added thoughts. Give disability its rightful place when it comes to diversity recruiting. Remember that the world market represented by disabled people is 1.2 billion, roughly the size of China. Hiring employees who represent major markets is good business, particularly when employers are expected to face a shortage of skilled workers by 2020.

"Rich puts everything together," says Tej Singh Hazra, manager of corporate diversity and inclusion at IBM Canada. "He does a great job."

IBM is just one of the heavy hitters at Lime's upscale recruitment evening. PepsiCo, BMO Financial, Scotiabank and TD Bank Financial have all sent teams to talk to the students, who are studying everything from finance and human resources to journalism.

Elizabeth Taylor, now a wheelchair user, honored for her HIV/AIDS charity work

I know the tabloids are writing about Elizabeth Taylor to sensationalize the fact that she now uses a wheelchair, but I think she looks beautiful. It's a wonderful message to the world about disability as "just a part of life" that the legendary star is out and about and living her life now as a wheelchair user.

This picture from The Daily Mail in the UK shows Taylor arriving Sept. 25 to be honored at the Macy's Passport 2008 Gala, which raises funds and awareness for HIV/AIDS organisations. "Celebrities praised the 76-year-old for her legendary career and tireless commitment to the cause," The Daily Mail reported.

"Elizabeth is a hero - she is an iconic artist, designer, and entrepreneur," actress Kathy Ireland told "Entertainment Tonight." "She is a mentor, and she is loved by not only me, but people all over the world."

Lack of schools, day care put poor children along Texas Gulf Coast area at risk for mental health problems

From The Houston Chronicle:

At least 225,000 students remain out of school along the Texas Gulf Coast and 45,000 more preschoolers are still without child care — putting them in tremendous danger of physical and emotional neglect, advocates said Sept. 25.

About half these children already live below the poverty line and rely on school for two meals a day. Many are still living in homes without electricity and may be left unsupervised as their parents are forced to return to work, officials said.

"We're all distressed by the current state of Houston's children," said Bob Sanborn, president of Children at Risk, a nonprofit advocacy and research group. "The hurricane hit them hard, just like it hit everybody else."

Sanborn and others applauded area school districts' efforts to reopen. Allowing children to resume routines is a major step toward healing.

"Children not only need routine, they want routine," Sanborn said. "It's the quickest way to get our kids back to normal."

So far, all but about 10 school districts in the region have reopened.

Classes resumed at about 200 Houston ISD campuses by Sept. 25. While phasing in the reopenings has helped some children, it has left others confused.

At Burbank Elementary, which had its opening delayed, crossing guards showed up to work Thursday morning. Officials said the campus still had a number of issues, including falling ceiling tiles and air quality problems, that kept it from opening as previously announced.

One mother said she's walked her daughter to Burbank every morning since Tuesday.

"They didn't call or anything," said Maria Cruz, who doesn't have electricity and is relying on friends to update her on Burbank's status.

HISD spokesman Norm Uhl said Burbank's circumstances were unusual, in part, because the school's phone system was down and unable to send automated messages to parents..

The district still hopes to open the remaining 70 or so campuses Monday, but Uhl said it could be a last-minute call depending on whether electricity has been restored and repairs are finished.

State officials are expected to announce in the next few days how many of the missed days students will be expected to make up. Depending on that decision, local districts will have to decide whether to extend the school day, cancel holidays or add days at the end of the year.

In addition, at least 15 percent of the region's infants and preschoolers who attend day care are still without service, said Carol Shattuck, president of Collaborative for Children, which has been offering child care referrals for parents in need. About 47 of the area's 4,700 centers were destroyed by Hurricane Ike, and nearly 500 others were seriously damaged.

Officials said they're looking for grants and other resources to help parents, day care workers and centers.

Advocates said employers should be creative and understanding to help parents return to work as soon as possible.

"We've really been encouraging companies to be very family-friendly," Shattuck said.
Jose Rendon, vice president of public policy for the Houston YMCA, said they've tried to expand services in this time of crisis. They'll continue to respond to the needs of Houston-area families, who may now be required to work extra hours to make up wages lost since Ike hit.

"It's not a matter of a week or two weeks," he said. "Lives are going to be disrupted for a long time."

That's especially true for children in Galveston, officials said. The school district there still hasn't announced when it plans to reopen.

Dr. Irwin Redlener, a pediatrician and professor at the Columbia University Mailman School of Public Health and president of the Children's Health Fund, issued strong cautions to parents after surveying the damage in Galveston.

"There are risks — some that are visible, others that are not so visible," Redlener said. "It really does run the gamut from accidents and injuries in areas where there is rubble to infections and other contaminants. The point is to let the experts complete their analysis before bringing children back to the area."

Outside of physical risks, experts warn that children in both Galveston and Houston may experience mental health issues.

Parents and others must watch for any drastic changes in how children behave, including eating and sleeping patterns.

"The bottom line is, don't wait," said Steve Schnee, executive director of Mental Health and Mental Retardation Authority of Harris County. "If you start to see a change in your child, come forward and get assistance."

The ethics of disability disclosure

A disability related question to The Ethicist in The NY Times Sept. 28. The ethicist has the correct answer but it is upsetting that models would behave in such a discriminatory way.

I have a fledgling photography business, mostly shooting aspiring models. I am a full-time wheelchair user. When I mention that in e-mail messages when booking a shoot, I get a lot of cancellations — a model suddenly remembers a prior engagement — or just out-and-out no-shows. Is it ethical not to say up front that I have a disability? — JACK HENIFORD, YORK, S.C.

You have the same ethical duty to alert people that you are a wheelchair user that you have to warn them that you are African-American or gay or a fan of lite jazz: none. (Well, maybe this last, if you intend to play that carbonated treacle during photo sessions.) If people find these things off-putting, that’s their problem, not a prejudice you must cater to. Being a wheelchair user is not germane to the task at hand.

Strictly for your own convenience, without regard to the delicate sensibilities of any aspiring model, you might choose to say something to avoid last-minute walkouts, but that is a practical consideration, not an ethical obligation.

Temple University offers new Disability Studies lecture series this fall

Temple University's Institute on Disabilities has begun a new Disability Studies Lecture Series — "The Geo-Politics of Disability" this fall.

The lecture series will present new work by recognized scholars in the field of Disability Studies. Talks will explore new ways of conceptualizing people with disabilities as social actors on a global scale who resist, revise, and re-imagine contemporary understandings of human differences. Lecturers will draw from examples that are trans-historical and cross-cultural in order to understand possibilities for the creation of new collective efforts to contest the assignment of disability to a stigmatized social status.

Speakers in the Fall 2008 semester:

  • September 17: Robert McRuer, Associate Professor in the Department of English at The George Washington University. "Bad Education: Crip Representation and the Limits of Tolerance"Contemporary crip representations, particularly in film, expose and critique discourses of tolerance. Professor McRuer examines the antisocial thesis that is, at this point, well known in queer theory but has no clear analogue in Disability Studies. What might antisocial theory have to offer Disability Studies and how might crip theory be more central to larger contemporary critiques of identify, neoliberalism, and futurity. Robert McRuer is an associate professor in the Department of English at The George Washington University, where he teaches disability studies, queer theory, and cultural studies. He is the author of Crip Theory: Cultural Signs of Queerness and Disability and co-editor, with Abby L. Wilkerson, of "Desiring Disability: Queer Theory Meets Disability Studies."
  • October 15: Sumi Colligan, Professor of Cultural Anthropology, Massachusetts College of Liberal Arts. "Conceiving Social Justice: Disability Rights Discourse and Practice in an Israeli Setting"An incipient disability rights movement in Israel has articulated ideas about challenges by imagining and implementing narrowly- or broadly-conceived notions of social justice in an Israeli context. Professor Colligan draws from interviews and participant-observation research with activists to examine ways in which national ideology, a climate of militarism, the penetration of neoliberalism, and the global circulation of human rights discourses shape and constrain contemporary conceptions, strategies, and struggles. Sumi Colligan teaches Anthropology and Disability Studies at the Massachusetts College of Liberal Arts. Her current research interests include cultures of resistance and the Middle East. She, along with Liat Ben-Moshe, recently co-edited a special issue of the Disability Studies Quarterly on "The State of Disability in Israel/Palestine."
  • November 19: Nirmala Erevelles, Associate Professor of Social Foundations of Education and Instructional Leadership, University of Alabama. "Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality."The omission of race in Disability Studies and disability from Critical Race Studies has disastrous consequences for disabled people of color caught in the violent interstices of multiple differences. Professor Erevelles draws upon her case study research about a 13 year old African American girl who is functionally illiterate and her mother's combat with an uncaring Special Education bureaucracy that is threatening to expel the girl from middle school. The talk describes how individuals located at the intersections of race, class, gender, AND disability come to be constituted as a non-citizen and a (no)body by the very institution that is designed to protect, nurture, and empower disabled students and their families. Nirmala Erevelles is Associate Professor of Education & Instructional Leadership in Educational Leadership, Policy, and Technology Studies at the University of Alabama. Her teaching and research are in the areas of Disability Studies, Sociology of Education, Multicultural Education, Feminist Theory, Postcolonial Theory, and Qualitative Research Methodologies.

All lectures will begin at noon in the 1810 Liacouras Conference Suite, Liacouras Walk, on the main campus of Temple University.

People First of Montana fights against SSI marriage penalty

A press release from People First of Montana, a disability rights group:

Helena, MT--- In a packed room Sept 26, with U.S. Senate Finance Committee staff linked in by phone, Montana People First members and others offered personal testimony about the pain and suffering caused by the SSI "marriage penalty."

Following the testimony, they presented over 2500 petition signatures they had collected from citizens all over Montana to a local staff member of Sen. Max Baucus, who chairs the Senate Finance Committee.

In addition to the monetary penalty suffered by SSI recipients who marry, those presenting testimony cited additional penalties such as:

  • Not being able to openly celebrate their love and commitment to one another in the company of friends and family

  • Not being able to inherit one another's estates as a spouse

  • Not being able to get information when their partner is in the hospital

  • Not being able to make end of life decisions for their partner when necessary

  • Not being able to make funeral arrangements for their partner

  • Not being able to live openly as husband and wife

Many people with disabilities live on a $637/month federal SSI benefit, an amount that is about 75% of the poverty level. When two unmarried SSI recipients live in the same household and share expenses, each continues to receive a full $637/month SSI benefit. However, when two people with disabilities of the opposite sex marry, and one or both receive SSI, their combined benefit as a couple ($956/month) is reduced to 75% of the total of their two individual benefits($637/mo + $637/mo =

As a result, SSI recipients with disabilities who wish to marry like their typical peers, in accordance with social convention and/or their faith, hesitate to do so, or choose not to marry at all rather than risk the loss of precious dollars needed for basic food and shelter, as well as for disability related expenses.

Seeking to challenge this policy that treats people who share households differently based on their marital status, People First of Montana enlisted the assistance of several other groups to form a Montana Marriage Penalty Task Force. Members of the Task Force come from Disability Rights Montana, Montana People First, the Montana Advocacy Coalition, the State Independent Living Council, the disability rights organization ADAPT, the Rural Institute at the University of Montana, and the general citizenry.

Why is there a marriage penalty? The original reduction in benefits for a married couple, or a couple deemed to be married under Social Security rules, was put into place on the premise that there are "economies of scale" when two or more people live together. This "economies of scale" premise in SSI was patterned on the "economies of scale" present in the TANF program (originally ADC/AFDC) for families. When Congress implemented this "economies of scale" concept for married SSI recipients, they did so with no consideration for the extra costs faced by people with disabilities because of their disabilities.

And since SSI monthly benefit amounts have not kept up with the steadily rising costs of food, shelter and transportation, etc., an SSI dollar buys less and less every
year. "Priced Out in 2006," a national housing study published in 2007, found that the national average rent for a studio/efficiency apartment was less than a full SSI monthly benefit.

A further complication exists for people with disabilities because the definition of "married" under the SSI program is broader than the common definition. The Social Security Administration (SSA) may deem a couple to be "married" for SSI purposes if they "hold themselves out as husband and wife to their community," even though they do not meet the legal definition for marriage in the state in which they live. The expanded definition of marriage applies to situations where either one or both members of a couple are receiving SSI.

Typically when applying for SSI, proof of marital status is not required if the person does not live with an unrelated person of the opposite sex, and claims not to be married. However, if a person lives with an unrelated person of the opposite sex, each must explain their relationship and answer certain questions. Some of these questions include what names the two are known by, whether they introduce themselves as "husband and wife," what names they use on their mail, who owns or rents their home, and if there are any bills, installment contracts, tax returns or other papers that show them as husband and wife.

How people answer those questions, along with other factors, is used by SSA to determine whether two individuals have "held themselves out to the community as married." Therefore, SSA can consider a couple to be married even if the couple has never been legally married.

Too often, people with disabilities who rely on SSI choose to live secretly with a partner to maintain vital benefits at amounts that barely cover basic food and shelter costs.

The U.S. Supreme Court has found that SSA's marriage penalty does not violate the Due Process Clause of the Fifth Amendment, which prevents the government from
depriving citizens of property, without due process. Unless another avenue for legal challenge emerges, Congress is the remedy for any potential "fix" that would change SSA regulations so that each beneficiary is treated as an individual. Montana People First members hope that their efforts will inspire others around the country to join them in asking their Senators and Representatives to take legal action to remove the marriage penalty from the SSI program.

For more information, contact Raylynn Lauderdale, Disability Rights Montana, at (406) 449-2344, E-mail: raylynn@disabilityrightsmt.org.

Disability Rights Montana is the federally mandated civil rights Protection & Advocacy System for Montana. Our mission is to protect and advocate for the human, legal and civil rights of Montanans with disabilities while advancing dignity, equality, and self-determination.