The lawyers are generally not acting on existing complaints from people with disabilities. Instead, they identify local businesses, like bagel shops and delis, that are not in compliance with the law, and then aggressively recruit plaintiffs from advocacy groups for people with disabilities.
The plaintiffs typically collect $500 for each suit, and each plaintiff can be used several times over. The lawyers, meanwhile, make several thousands of dollars, because the civil rights law entitles them to legal fees from the noncompliant businesses.
The practice has set off a debate about whether the lawsuits are a laudable effort, because they force businesses to make physical improvements to comply with the disabilities act, or simply a form of ambulance-chasing, with no one actually having been injured.
The suits may claim a host of problems: at a deli grocery in West Harlem, an overly steep ramp without guardrails, high shelves and a narrowing pathway near the refrigerators; at a yogurt shop in the theater district, no ramp, no bathroom doorknob that can be opened with a closed fist and exposed hot water drains under the bathroom sink; at a flower shop on the Upper East Side, no ramp and shelves that are too high.
All of those suits were filed by Ben-Zion Bradley Weitz, a lawyer based in Florida, who has a regular group of people with disabilities from whom he selects plaintiffs. One of them, Todd Kreisler, a man in a wheelchair who lives on the East Side of Manhattan, sued 19 businesses over 16 months — a Chinese restaurant, a liquor store and a sandwich shop among them.
The results of the suits were almost immediate: workers grabbed their hammers, installing new ramps, lowering counters and shelves and making businesses more accessible to people with disabilities. And as a product of the litigation, the businesses had to pay thousands of dollars in legal fees to Mr. Weitz and his associates.
Mr. Weitz is leading the charge into New York’s courtrooms. Since October 2009, he has sued almost 200 businesses in the state, mostly in Federal District Court in Manhattan. He has eight years of experience filing these suits in Florida, where his practice does not seem to be lagging. Two weeks ago, he brought claims against four Tampa businesses — a strip mall, a convenience store, a bar and a print shop.
Another lawyer with a thriving practice, Martin J. Coleman of Long Island, has filed almost 130 cases in the Eastern District of New York. Mr. Coleman said he was aware the lawsuits had drawn criticism.
“Folks go out there and say, ‘I’m mad at the plaintiffs,’ and ‘I see the same names,’ and ‘Let’s go bash the plaintiffs’ attorneys,’ “ Mr. Coleman said. “I don’t mind that, but the law has been there, don’t kid yourself.”
“As a private attorney, every lawsuit that I file is to make money, because that’s how I make a living,” he added. “And in that regard, I’m no different than any other private attorney.”
Few, if any, cases have gone to trial, according to a review of electronic court records; the defendants usually agree to settle, often in less than six months, closing the cases at a breakneck pace for federal court.
Suit by suit, the lawyers are forcing this tough and intensely pedestrian city, so resistant to change, to meet standards for accessibility that are more than 20 years old. In doing so, they are part of a nationwide trend: In the last year, 3,000 similar suits, including more than 300 in New York, were brought under the Americans With Disabilities Act, more than double the number five years ago. Most of the cases involve claims against businesses filed by nonemployees.
Lawmakers and federal judges have questioned the practice, contending that the lawyers are only interested in generating legal fees; they say the lawyers typically do not give the businesses a chance to remedy the problem before filing suit. Those who defend the lawsuits say the means are justified to bring more businesses into compliance.
Because the settlements are invariably bound by confidentiality agreements, it is impossible to calculate the precise amount lawyers earn in total. One defense lawyer said his client had paid Mr. Weitz and the lawyers who worked with him $6,000 in legal fees. At that rate, Mr. Weitz would take in more than $600,000 for the 106 cases he has closed in New York.
The Americans With Disabilities Act of 1990 prohibits discrimination by private entities that are open to the public. When Congress was considering the law, advocates for people with disabilities wanted to be able to sue for damages. But Congress allowed litigants to sue only for injunctive relief, or court-ordered remedies to the problems that were raised in lawsuits.
As a compromise for disabled plaintiffs, Congress also awarded fees to the lawyers that bring their discrimination cases.
Ruth Colker, a law professor at The Ohio State University, who specializes in disability law, said the lawsuits were an effective enforcement strategy. “It would be really be impossible for people to find a lawyer if there was no way for lawyers to get paid,” she said.
In Florida, editorial boards, lawmakers and federal judges have long argued against the practice. In 2004, Judge Gregory A. Presnell of Federal District Court in Orlando said in a written opinion in favor of a business owner: “Plaintiff’s testimony left the distinct impression that he is merely a professional pawn in an ongoing scheme to bilk attorney’s fees from defendant.”
Former Representative Mark Foley of Florida regularly introduced legislation to amend the Americans With Disabilities Act to require that business owners receive 90 days notice before being sued. Similar legislation is pending now.
Mr. Weitz, described on his firm’s Web site as an “advocate for the disabled community,” filed cases in New York with a local lawyer at first, but then on his own after his admission to the state bar in 2010. He did not return calls seeking comment.
Mr. Weitz’s use of Mr. Kreisler was not unique. Zoltan Hirsch, a double leg amputee, was represented by Mr. Weitz in 143 suits, filing as many as nine suits on a single day. Maryann Santiago filed six suits. Carr Massi, who uses a wheelchair, sued five businesses in Manhattan.
Ms. Massi said she learned about Mr. Weitz’s efforts at a meeting of Disabled in Action, an advocacy group in New York. “He gave a presentation about access and stuff,” she recalled.
“Let’s give it a shot,” she said she thought to herself. “Stop complaining and do something about it.”
Asked if she ever patronized the businesses she sued after they made improvements, Ms. Massi said, “Unfortunately, no.”
While the disabled plaintiffs cannot collect damages under the disabilities act, they are entitled to receive awards as long as they also sue under city or state human rights law.
Local business owners, who say they are often sued without warning, call the suits shakedowns, invariably signing settlement agreements with strict confidentiality requirements.
“All they want is money; they get the money, and they move on to the next target,” said Ming Hai, a Queens lawyer who has defended businesses from the suits. “It has become a profession to go out and look for a little problem here and there.”
Ms. Massi did not agree with critics of the aggressive litigation by Mr. Weitz. “He is fighting for something he believes in, and if he gets a few bucks, why not?” she said. “I feel like whatever he is doing I am benefiting from it and other wheelchair users are benefiting from it.”
Some 150 disabilityadvocates from across the country headed to the White House Friday for a day-long powwow with administration officials and they got a surprise visit — from the president himself.
The group of advocates included individuals with disabilities, their families and professionals affiliated with The Arc who were invited to meet with Obama administration officials.
The event was part of the White House Community Leaders Briefing Series, a weekly initiative designed to establish direct dialogue between local leaders and top federal officials.
President Barack Obama surprised the group by stepping in for a short, late-morning talk in the South Court Auditorium.
“I want you all to know that I’m going to keep fighting everyday for an America which lives up to our most basic values, not just for some, but for us all. But I need your help,” Obama told the group.
The president praised the advocates for speaking up last summer during a series of tough budget talks about the importance of Medicaid and said that continued advocacy of that kind is needed.
“People with disabilities deserve the chance to build a life for themselves in the communities where they choose to live,” Obama said, adding that he supports high education standards and employment opportunities for those with disabilities.
“I’ve got your back and I’m looking forward to working with you for many years to come,” he said.
In addition to Obama, the group also heard from top officials at the Justice Department and the Medicaid program, among others.
Brent Pilgreen, 53, is a quadriplegic. He is a plaintiff in one of the cases against the city of L.A.
Los Angeles may be the land of the freeway, but it is notorious for its bad sidewalks — buckled, cracked and sometimes impassable. By the city's own estimate, 42% of its 10,750 miles of pedestrian paths are in disrepair.
Now a series of civil-rights lawsuits against Los Angeles and other California cities is for the first time focusing attention — and money — on a problem that decades of complaining, heated public hearings and letter-writing campaigns could not.
The lawsuits were filed by disabled people who say broken sidewalks make it impossible for them to get around and seek repairs or improvements. The plaintiffs contend that the conditions violate the federal Americans With Disabilities Act, a tool that has been used across the country to force better access at restaurants, department stores, movie theaters and the like.
The tactics are already paying off. In the biggest sidewalk-related settlement in California, the California Department of Transportation in 2009 agreed to spend $1.1 billion over 30 years to fix state-controlled sidewalks, crosswalks and park-and-ride facilities.
Sacramento settled a similar case by agreeing to allocate 20% of its annual transportation fund over the next 30 years to make repairs and install ramps.
In Los Angeles, the city has settled two cases for about $85 million. That money will be used over the next two decades to build thousands of sidewalk access ramps at curbs.
But there are four other cases pending that could leave the city on the hook for hundreds of millions of dollars.
Fixing all of Los Angeles' sidewalks would be a daunting task: Officials estimate the cost of improving them all would top $1.5 billion. But advocates for the disabled hope they can make a measurable dent in the problem. "The city has never developed a comprehensive plan to address this issue, even when economic times were good," said Surisa Rivers, an attorney with the L.A.-based Disability Rights Legal Center. "Such failure hasn't been a story about the city's inability to finance disability access, but the lack of political will to do so."
The campaign is being led by the disabled but is also winning support from advocates of alternative transportation. They argue the city spends far too much fixing roads and not enough making L.A. a more walkable place.
"We need to think of our streets as a place that we move people not just in their car, but on their feet, on a bike and on a bus," said Deborah Murphy, founder of L.A. Walks. "That's our public space…our streets are where we get together."
There is little dispute that the sidewalks are an embarrassment. But some officials question what the city can do when it already faces a $72-million budget shortfall.
"We got at this point because the city is not invested in its infrastructure," said Councilman Bernard C. Parks, who added that the problem is difficult to solve because "there is no money."
Disabled residents like 53-year-old Brent Pilgreen say bad sidewalks mean they are effectively unable to safely leave the block they live on. Pilgreen, who is quadriplegic and uses a motorized wheelchair,is a plaintiff in one of the cases.
"I can't make it north, south, east or west to any commercial business without having to go through some sort of gantlet or ride in the street and compete with cars," he said.
As a test, Pilgreen recently embarked on an arduous journey to the Denny's a few blocks from his home in Sherman Oaks. Even with a few recent improvements to the sidewalks, he couldn't make it because of a metal sign pole stuck in the middle of the path.
"If I want to go out of my house ... If I want to go up to the corner and buy an ice cream or anything, a soda pop, I can't go there," he said. "I have to have a secondary person with me to spot me and prevent me from falling."
City lawyers believe they can successfully defend against the lawsuits.
While repairing and maintaining roads has long been the duty of City Hall, the responsibility for sidewalks has a more murky history. Decades ago L.A. homeowners had to directly pay for their sidewalks through an assessment process.
That lasted until 1973, when residents complained and the City Council assumed responsibility for needed repairs because of damage from tree roots. Money for that work quickly ran out and officials have tried to reinstate the previous practices with little success, often maintaining that property owners already own the sidewalks and are responsible for repairs.
Nazario Sauceda, head of the Bureau of Street Services, said that for several years his department has received no funding for permanent sidewalk repair, which can cost $250,000 to $300,000 per mile.
Instead, city workers mostly rely on temporary measures: pothole-repair trucks dumping hot asphalt on cracks and breaks in the concrete pavement. But that can be an obstacle in itself because the asphalt creates protruding black bumps that are difficult to navigate in a wheelchair.
The sidewalks in Judy Griffin's West L.A. neighborhood are in such bad shape that she often rides her wheelchair in the street because she refuses to be sequestered in her home.
But it isn't easy. She has tipped over on Westwood Boulevard while trying to get to a physical therapy appointment, was struck by a motorist who didn't see her crossing an intersection, has powered through low-hanging branches and has fought seemingly endless battles with City Hall to improve the sidewalk on her own street.
Griffin said she often feels like a second-class citizen and is frustrated that city officials are not more empathetic to those with disabilities and have bigger projects in mind than fixing sidewalks and curbs.
"They're not sensitive to it and they have other priorities," said Griffin, who is a plaintiff along with Pilgreen in a class-action suit. "It's very easy to go for the big gold, to go for the stadium, rather than patch up the sidewalks for people you don't value."
National disability advocates and district residents who use wheelchairs will join D.C. City Council ChairmanKwame Brown at a press conference to voice support for legislation thatwould pave the way for more wheelchair-accessibletaxicabs using clean-burning, less expensive,domestic natural gas as an alternative fuel.
Washington D.C. is one of a growing number of major cities -- including New York City, Chicago andPhiladelphia -- considering plans to dramatically improve their taxi fleets, making them cleaner andaccessible.
The D.C. City Council’s Committee on Environment,Public Works and Transportation is holding a hearing on the issue on Monday.Attendees and members of the news media will have the opportunity to view and tour the new vehiclesthat are equipped to serve the 14 million Americans for whom existing fleets are inaccessible.
The vehicles will be parked outside of the John A. Wilson Building where the event is occurring.
WHAT: Rally to show support for legislation on new and better taxis for D.C.
WHO:
Kwame Brown, Chairman of the D.C. City Council Mark Perriello, President and CEO, American Association of People with Disabilities Kelly Buckland, Executive Director, National Council on Independent Living James Weisman, General Counsel, United Spinal Association Madonna Long, Consumer Advocate, Pride Mobility Products, Inc. Fred Drasner, Chairman, Vehicle Production Group Mark Riley, Vice President, Clean Energy
WHEN:
Monday, January 30, 2012, 10:00am ET
WHERE:
Corner of Pennsylvania Avenue and 13 ½ Street NW (Outside the John A. Wilson Building) Washington, D.C.
She's known for her zippy one-lines and her unyielding loyalty to Coach Sue Sylvester on “Glee.”
Now actress Lauren Potter, 21, may have another major role.
President Obama announced his intent to appoint Potter and Julie Ann Petty, a project trainer who focuses on educating people with intellectual disabilities, as members of the President's Committee for People with Intellectual Disabilities.
In a press release statement Obama said, “I am grateful that these talented and dedicated individuals have agreed to take on these important roles and devote their talents to serving the American people. I look forward to working with them in the coming months and years.”
This committee consists of 21 citizen members appointed by the president and 13 federal government members who meet periodically over a year and report findings to the president.
Potter, who plays Becky Jackson on “Glee,” said in a statement: “It is important to me that people with intellectual disabilities are represented and treated fairly and are given the same opportunities as every other American.”
“Our challenges are the same as many others, we want to be safe in school—free from bullying and teasing, we hope to be welcomed at parks, recreation centers and other community activities, we worry about jobs and where we will live but mostly we want to be treated how you want to be treated - with respect!”
Potter who has Down syndrome, has routinely spoken about her troubles growing up as a special needs child.
"Like so many other kids with special needs, I have been bullied," Potter told People magazine earlier this year. "Kids in elementary school made me eat sand, and those same boys would walk behind me, teasing me. Finally I had enough, and I told them to 'grow up.' "
“I never thought I could be an actress, but I am. I never thought I would be a presidential appointee and I am!” Potter said in a statement. “The possibilities are endless for anyone and that is what I hope to help bring to this committee - a real life example that with a supportive community and an encouraging country we all can live the American dream!”
For years, New York State has assured its employees who care for the developmentally disabled that there was a way they could confidentially report any concerns they had about the treatment of those in their care.
And for years the state has been routinely breaking its promise.
The Office for People With Developmental Disabilities, the state agency that oversees thousands of group homes, has long employed a small number of ombudsmen around the state who, by law, are instructed to “receive and keep confidential any complaint” from parents, advocates and anyone else, including state employees.
The state advertises to its own employees that they can be assured their reports to ombudsmen are kept confidential. The promises appear in pamphlets, posters and even on refrigerator magnets, like one displayed inside a group home near Albany. A call to one of the ombudsman’s voice mails also promised confidentiality, without exception.
But despite these reassuring messages, agency officials conceded that their internal policy has for years been to encourage ombudsmen to turn over the names of whistle-blower employees to agency officials when they report abuse or neglect. It is the latest example of a system that appears to be set up to discourage and even punish reporting of abuse by state employees.
Advocates for the developmentally disabled expressed shock at the practice, and top agency officials, after initially defending the policy in interviews, have now conceded it was flawed.
A spokesman for the agency, Travis Proulx, said in an interview in August that “there is no confidentiality for any employee who is reporting abuse or neglect, even to the ombudsman.”
But several weeks later, after The New York Times made the agency aware of the state’s numerous promises of confidentiality, the agency’s commissioner, Courtney Burke, issued a statement backing away from her agency’s handling of complaints from employees. She said she also welcomed a new state law transferring the ombudsmen to another agency next month.
“It is my hope that by shifting the ombudsman to an outside entity, in addition to the other steps this administration has taken to ensure accountability throughout our agency, people will feel more comfortable speaking out when they see abuse and confident in the arm’s-length oversight that individuals, families and employees expect from those entrusted to this role,” Ms. Burke said in a statement.
She was appointed in March after Gov. Andrew M. Cuomo forced out her predecessor, amid a Times investigation that revealed that state workers who abused residents were being kept on the job and that the state was retaliating against employees who reported abuse and other concerns.
The Times learned of the ombudsman policy after a state employee, Jane Taylor, approached a reporter and said the ombudsman in the Albany area, Carrie Sonthivongnorath, had given her name to department officials.
Ms. Taylor had reported several alleged episodes. In one, she said, she witnessed a state worker cursing at a resident; in another, she saw a state worker taking sick residents outside to sit in a van on a particularly hot summer day. In another, she was troubled after a state psychologist e-mailed several colleagues, including her, joking that a misbehaving resident was “joining the circus.”
Ms. Taylor, who develops and monitors daytime activities for residents in several group homes, said that not long after she reported the episodes, in summer 2010, Ms. Sonthivongnorath told her that she had revealed her name to a top official in the agency’s Albany region.
Ms. Taylor believes she was then retaliated against over several months. She was required to attend counseling sessions with a supervisor, Cathy Turck; in a memorandum, Ms. Turck criticized Ms. Taylor for the way she reported the three episodes, saying “when reporting an incident, you must utilize your chain of command.” Ms. Taylor said she reported episodes to supervisors but was not taken seriously.
Ms. Taylor was also served with a formal disciplinary charge in March, accusing her of making a false claim that a co-worker swore at her. The disciplinary notice was issued eight months after the alleged episode occurred, and is unresolved.
“You’re supposed to be able to go to the ombudsman and report confidentially, but it didn’t happen that way — she turned me in,” Ms. Taylor said, adding, “The whole thing, in a nutshell, is that I went to the ombudsman, and they didn’t like it.”
A second state employee who also works in the Albany area corroborated key parts of Ms. Taylor’s story. “She is being bullied, threatened, and totally retaliated against in so many different ways,” the employee said, adding that Ms. Taylor was having difficulty even getting time off approved. The employee spoke on the condition of anonymity for fear of retaliation.
Ms. Sonthivongnorath declined to comment, as did Ms. Turck. The Office for People With Developmental Disabilities declined to comment on Ms. Taylor.
Beyond Ms. Taylor’s case, the practice of turning over potential whistle-blowers to management alarmed critics. The State Mental Hygiene Law provides that an ombudsman shall “receive and keep confidential any complaint, information or inquiry from any source.”
To support their position demanding employees’ names , state officials initially cited a 1989 case in which an ombudswoman sued because officials were not letting her keep complaints confidential. But the ombudswoman, Cynthia Ziobrowski, won. A court affirmed the right of the ombudsman’s office to keep the information confidential. State officials had difficulty explaining how the case supported their position and eventually withdrew their argument.
Bridgit M. Burke, the director of the Civil Rights and Disabilities Law Clinic at Albany Law School, which represented Ms. Ziobrowski in 1989, said, “To use that case to say that the ombudsman has to share information with the agency really is in conflict with the whole purpose of the case, which is to give the ombudsman freedom from the agency to pursue a case wherever it takes them.”
Ms. Burke and two Albany Law School students, Nicole Kulik and Stephen Barry, reviewed state law and court rulings and found that while the ombudsman may have some discretion to share information, the state’s practice of promising confidentiality certainly set an expectation of it.
Michael Carey, an advocate for the developmentally disabled, whose son died in state care, said the ombudsman policy was the latest sign that the Cuomo administration had more work to do in its efforts to overhaul the system.
“They keep saying there’s no tolerance of abuse and they’re encouraging people to report,” he said, “but they need to put their money where their mouth is.”
On Dec. 23, the ombudsman program — there are eight ombudsman jobs around the state, though only three are filled — will be transferred to the State Commission on Quality of Care and Advocacy for Persons With Disabilities.
Roger Bearden, the agency’s commissioner, said in an interview this week that the program would change under his watch. “We intend to preserve confidentiality for people who communicate with client advocates or ombudspersons,” he said.
They say prayer is the last refuge of scoundrels, but what if you already pray every day, as the ostentatiously devout Rick Santorum presumably does? Despite practically moving to Iowa to campaign for president, despite having impeccable conservative and personal morality credentials, and despite constant Republican dissatisfaction with their candidates, the former Pennsylvania senator just can’t seem to catch on.
So Santorum has resorted to exploiting his youngest child’s disability for political gain. In a new ad, Santorum holds his young daughter who was born with Trisomy 18, a condition similar to Down Syndrome, as he talks about her health struggles and his love for her.
“Some people describe people like Bella as 'disabled children,” Santorum says. “I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her." I find it offensive that Santorum uses “disabled” as a synonym for small-minded or otherwise flawed. It’s akin to saying “retarded” as a synonym for stupid (e.g. “it’s clear that we are the retarded ones, not her.”) But we know what he means and let’s give him credit for meaning well.
Unfortunately, this sentiment does not in any way relate to Santorum’s policy proposals or platform. And that’s the problem. Disability is a legitimate political issue, but not in the way that Santorum uses it. People with disabilities need real policy commitments, not feel-good commercials. Chiefly, say advocates, those policies are: robust protection from discrimination under the Americans with Disabilities Act (ADA), adequate funding and enforcement of the Individuals with Disabilities in Education Act (IDEA), and sufficient funding with the right priorities for health insurance and long term care. On every single one of these Santorum, like nearly every other Republican, is either silent or in the wrong.
The ADA has been gutted by conservative judges, invariably Republican appointees, who have ruled that requiring state or local governments to make facilities accessible to people with disabilities violates states rights. When he was a senator Santorum routinely voted in favor of George W. Bush’s anti-civil rights judicial nominees, without ever raising the question of how their rulings might impact people with disabilities. Nothing he has said on the campaign trail suggests he would take a different approach as president.
On education, Santorum’s fiscal conservatism is contrary to meeting the needs of students with disabilities. Santorum has pledged to “cut back a lot in the Department of Education.” That’s the Department responsible for overseeing IDEA. Santorum acknowledged there are programs “that may still need to be provided for on the federal level,” but IDEA is not one he mentioned.
As for health care, Santorum has taken advantage of his daughter’s disability to denigrate a proposal that was very much in the interests of people with disabilities, namely health care reform. Speaking in Iowa in April, Santorum claimed that the Affordable Care Act (ACA) will deny coverage to children such as his daughter Bella. ““I look at how society with socialized medicine treats children like Bella, and children like Bella don’t survive, Children like Bella are not given the treatment that other children are given.” This is false. As Think Progress noted: “the law actually prevents insurance carriers from denying coverage to individuals with pre-existing conditions (and disabilities), prohibits health plans from putting a lifetime dollar limit on benefits and offers new options for long-term care. This why groups like the American Association of People with Disabilities, National Organization For Rare Disorders, and The Arc of the United States not only support the law, but have gone filed an amicus brief [sic] in its defense.”
The American Association of People with Disabilities (AAPD’s) board chair responded in a letter at the time, writing, "We find the comments of Sen. Rick Santorum in his recent visit to Iowa regrettable and misleading... AAPD firmly believes that the ACA advances health care coverage broadly for those with all types of disabilities. Most important, the ACA eliminates the use of pre-existing conditions to deny insurance to people with disabilities, like Senator Santorum's daughter Isabella."
So Santorum’s campaign pledge to repeal the ACA is the opposite of support for people with disabilities. “When you talk about valuing people with disabilities, is there a policy behind that?” asks Lara Schwartz, spokesperson for AAPD. “Most people with disabilities don’t have a dad who is a former senator. For them medical care, long term care and education are potentially bank breaking issues. Santorum should make sure everyone has the opportunities his daughter does.”
When John Salmen invited me to see the Takoma Park, Md., house where he and his wife, Ann Scher, “expect to spend the next 50 years,” I wasn’t sure what to expect. As both Salmen and his wife are already more than 50 years old, the house would eventually have to accommodate a person facing the frailties of advancing age.
Would this be the centerpiece of the design? After all, Salmen has spent his architecture career specializing in barrier-free design that accommodates people with disabilities.
The answer was a resounding no.
Salmen has a playful manner, and so does his house. Nothing in it says “a place I can live when I’m frail and 90 years old.” Instead, most visitors will find it to be a delightful renovation of a 1900’s bungalow with a newer addition on the back.
The exterior of the house conforms to Takoma Park’s historic district requirements and looks similar to the other modestly-sized, clapboard-sided, Craftsman-styled bungalows with front porches. The Craftsman-styled interior, however, is unique to the neighborhood. It features acolor palette that is historically authentic but unusual in its hues and strong contrasts — cobalt blue, pumpkin orange and light-cream yellow.
The heart of the 3-bedroom, 2, 000- square-foot house is the eat-in kitchen/family room, which occupies the entire first-floor area of the new addition. In keeping with the Craftsman-styled interiors, the space features abundant amounts of clear-stained cherry trim around doors and windows, an exposed beamed ceiling, strategically placed cherry clad columns that hold it up, and multiple windows on three sides that flood the area with natural light.
Of greater interest to me, however, were the numerous, nearly invisible ways in which Salmen designed the main living area to be flexible, not in the sense of “multipurpose” but in “accommodating disabilities.” Cloaked in a Craftsman aesthetic, almost every detail has been masterfully designed to help this couple navigate the shoals of old age.
Although neither spouse is disabled, Salmen’s years of designing for disabled people have made him acutely aware of how to modify a space so that an older person can comfortably “age in place.”
Many of Salmen’s design subtleties address diminished vision, which begins to affect almost everyone in their 40s and 50s and becomes much more pronounced as we reach our 80s, said Mariana Figueiro, a professor at Rensselaer Polytechnic Institute in Troy, N.Y., and an expert in lighting issues for the elderly.
In choosing the color scheme for his main living area, Salmen went for bold contrast — light yellow walls play off against the rich red oak flooring and the darker cherry trim. Today, this contrast creates a visually lively space, but 30 years from now it can help Salmen and Scher to maintain their balance and prevent falls. When walls and floors are the same color — as is commonly the case in traditional senior housing — an elderly person with poor vision may be unable to distinguish between floor and wall, “lose the horizon” and fall, Salmen said.
Strategically placed lighting can also help a person with diminished vision to navigate through a space. The light source does not need to be a fixture. In this case, ambient light shining through a glass cabinet indicates the direction of the main living area from a central hallway.
The abundance of natural light that streams through the 12 windows in the kitchen/family room area will be increasingly appreciated over time. Compared to a person aged 20, a person aged 70 generally needs about three times as much light for tasks that require more acuity such as reading or peeling and chopping vegetables in the kitchen, Figueiro said. The high clerestory openings above the kitchen and living areas provide indirect lighting that reduces glare, another issue for older people with vision issues, she said.
Other details here will accommodate a person in a wheelchair. For example, recessed into a corner, the generously-sized, quarter-circle-shaped dining table backs up against two built-in benches, which Salmen and Scher currently use for dining. When they have guests, they add chairs to the rounded side, which can easily accommodate two wheelchairs because the table does not have table legs; it has a single pedestal support.
The 18-inch level of the raised hearth makes it easy for a person in a wheelchair to operate the gas fireplace. The two large 36-inch-wide by 42-inch-high cherry panels that conceal Salmen’s enormous flat-screened television and elaborate home entertainment system are so light-weight an individual in a wheelchair can easily move them using only one hand or even only one finger, Salmen said.
The counters in the kitchen are set at varying heights to accommodate children, very short and very tall adults and individuals in wheelchairs. For average-height adults, the different counter heights make some cooking tasks easier. For example, it’s much more comfortable to knead bread and roll out pie crust on a 30-inch counter, six inches lower than the 36-inch standard height for kitchen counters, which are too high for most people, said Jane Langmuir, a Providence, R.I. architectural designer who designed the kitchen.
In this kitchen, the counter heights for the food-preparation areas are 33 and 34 inches. The 1.5-inch diameter grab bar in front of the sink currently functions as a dish-towel rack, but its easily graspable shape is ideal for a person in a wheelchair to hold while reaching down to pick up something dropped on the floor or for opening a drawer or lower cabinet.
The everyday dishes and glassware are kept in open shelves only three inches above the counter instead of the usual 18 inches that separate standard wall-hung cabinets from countertops. The lower shelves are an easy reach for the average adult and a godsend for a child, a short person or person in a wheelchair.
Salmen also added touches of serendipity. In working out the Craftsmen details with designer and builder Alan Abrams of Abrams Design Build in Takoma Park, Salmen decided to expose the two steel I-beams that hold up the second floor. This provided an opportunity to display about 50 model houses that he and his now-grown daughters put together “on the innumerable rainy Saturdays of their childhood,” he said.
At the end of the tour, I asked the obvious: What led Salmen and his wife to embark on such a huge undertaking when they were 30 to 35 years away from needing most of the accommodations that they so seamlessly incorporated into their house? Salmen offered two reasons. The first and most compelling was that when their younger daughter graduated from high school they were ready for a “life change and a nice little house,” Salmen said. They decided to make their new house their last house because he knew it would be much easier to organize the project in middle age than if they waited until they were older and the need became more apparent.
In your 60s and 70s, “It’s still doable but daunting physically and draining emotionally because you have one or two more decade’s worth of associations with the house,” he said. “In your 80s, you will very likely need other people to orchestrate everything, an unacceptable option for most elderly people who want to feel that they still have some control over their personal lives,” he said.
While there are close to 50 million Americans living with disabilities, Lives Worth Living is the first television history of their decades-long struggle for equal rights. Produced and directed by Eric Neudel, Lives Worth Living is a window into a world inhabited by people with an unwavering determination to live their lives like everyone else, and a look back into a past when millions of Americans lived without access to schools, apartment buildings, and public transportation – a way of life unimaginable today. Lives Worth Living premieres on the Emmy® Award-winning PBS series Independent Lens, on Thursday, October 27, 2011 at 10 PM (check local listings).
Dr. William Bronston is greeted by occupants of the women's ward, Willowbrook State Hospital, Staten Island, NY
Lives Worth Living traces the development of the disability rights movement from its beginning following World War II, when thousands of disabled veterans returned home, through its burgeoning in the 1960s and 1970s, when it began to adopt the tactics of other social movements. Told through interviews with the movement’s pioneers, legislators, and others, Lives Worth Living explores how Americans with a wide variety of disabilities — including the blind, deaf, mentally, and physically challenged — banded together to change public perception and policy. Through demonstrations and legislative battles, the disability rights community finally secured equal civil rights with the 1990 passage of the Americans with Disabilities Act, one of the most transformative pieces of civil rights legislation in American history.
Judy Heumann talks to supporters outside the HEW building in San Francisco in early April 1977
leading disability rights activist(Judy Heumann talks to supporters outside the HEW building in San Francisco in early April 1977)
HEW sit-in protestors April 1977
Judi Chamberlin
Mental Patients Liberation Front, a movement for the rights and dignity of people with mental illness (1944-2010)
Dr. William Bronston
former staff physician at the notorious Willowbrook State School who was dismissed after agitating for change
Bob Kafka
Established ADAPT of Texas, a disability rights advocacy organization
Zona Roberts
Counselor, UC Berkeley's Physically Disabled Students’ Program and Center for Independent Living, Berkeley; mother of disability rights pioneer Ed Roberts
Ed Roberts with his son Lee in the early 1980s
Pat Wright
Disability Rights Education and Defense Fund
John Wodatch
Chief, Disability Rights Section, Civil Rights Division, U. S. Department of Justice
Jack Duncan
Former Counsel, U.S. House of Representatives
Mary Jane Owe
disability rights activist, philosopher, policy expert, and writer
Marca Bristo, CEO
Access Living and leader in the disability rights movement
Michael Winter
former director, Berkeley Center for Independent Living
Lex Frieden
former director, National Council on the Handicapped
Dr. I. King Jordan
President Emeritus, Gallaudet University
Jeff Rosen
alumni leader, Gallaudet University
Senator Tom Harkin, (D-Iowa)
Bobby Silverstein
Chief Counsel, Senate Subcommittee on Disability Policy
Richard Thornburgh
US Attorney General, 1988-1991
Tony Coelho
Former Congressman, House Majority Whip, 1986-1989
About the Filmmaker
Eric Neudel (Producer/Director) has produced, directed, and edited numerous award-winning films for public television. His many credits include Eyes on the Prize, AIDS: Chapter One, LBJ Goes to War, Tet 1968, Steps, After the Crash, The Philippines and The US: In Our Image, Body and Soul, and more. He was a visiting senior critic and lecturer in film at Yale University and served as producer, director, and editor for Harvard University’s Derek Bok Center for Teaching and Learning, and Spectrum Media’s program series on the art and craft of teaching. Neudel was also a photographer and video production consultant, teaching video production to a team working for the Compass Project in Malawi. Photographs from his two years in Malawi were exhibited in the Sandra and Phillip Gordon Gallery at The Boston Arts Academy in October 2007. He also served as story consultant for Row Hard No Excuses, an award-winning documentary about two middle aged American men who set out to cross the Atlantic in a rowboat. Most recently he served as a photographer in Rwanda for The Boston Globe, where he directed, produced, and edited a companion documentary about the Maranyundo Middle School, which was built on the site of one of the worst concentration camps and killing fields in Rwanda.
ADAPT Protestors in Washington, D.C.
To learn more about the film, and the issues involved, visit the film’s companion website at www.pbs.org/independentlens/lives-worth-living. Get detailed information on the film, watch preview clips, read an interview with the filmmaker, and explore the subject in depth with links and resources. The site also features a Talkback section, where viewers can share their ideas and opinions.
Spinal cord injuries often have permanent, life-altering consequences. According to the Centers for Disease Control and Prevention, about 200,000 Americans are living with a spinal cord injury. Out of those individuals, 42.5 percent are paraplegic - unable to move or feel the lower body - and 56.4 percent are quadriplegic - unable to move or feel their arms and legs.
Living with paralysis can be emotionally and physically debilitating for the estimated 87.9 percent of people with spinal cord injuries living independently - that's where monkeys come in handy. Helping Hands: Monkey Helpers for the Disabled trains capuchin monkeys to be service animals for people with limited mobility, providing their recipients with lifetime care.
In this picture, a trained service monkey practices flipping a light switch at The Monkey College training facility in Boston, Mass.
Here, a monkey practices placing a CD in the player. Tasks like this take the monkeys some time to learn - requiring patience on the trainer's behalf - but the monkeys are trained gradually, using only positive reinforcement.
A monkey helper practices using an "itch cloth" to gently scratch an itch on her trainer's face. This task comes in handy for people living with paralysis. A majority of monkey helpers are placed with spinal cord injury patients, but there are also recipients who live with mobility limiting diseases like muscular dystrophy and multiple sclerosis.
Mary Kay became paralyzed from the chest down during a car accident many years ago. Once she learned about Helping Hands, she applied and was soon matched with her monkey helper, Amy. The two have formed an incredibly close bond and Mary Kay is grateful for the companionship that Amy provides.
"My favorite thing is when Amy sits real close to me and holds my hand, looks straight into my eyes and smacks her lips, for in monkey language that means 'I love you,'" says Mary Kay.
Michael lives with Duchenne muscular dystrophy, a disease that limits his mobility. He and his monkey helper, Kathy, have been a team for over three years.
"Kathy helps me to live safely and she has given me a greater level of independence," Michael says. "Although I am a college graduate, I had never had the experience of getting a job. Having Kathy's assistance has allowed me to work for the first time. I work from home as a writer for a national publication. Kathy turns on my computer and printer, helps me turn pages of books, etc. - all things I need to do my job."
Here, a monkey learns to place a water bottle in a holder, unscrew the top, and place a straw in it. Since monkey helpers are trained to be in-home helpers only, these are the kinds of tasks they perform best, eliminating the need for a recipient to have a human caretaker. However, all assistance outside of the home must be done by a human.
Living and training at The Monkey College is definitely not all work and no play!
Maryanne and her monkey helper Jessica were the 150th placement in Helping Hands' history. Matched just last year, Jessica has already made a huge impact on Maryanne's life.
"Each morning I open my eyes and see her sweet face, and her sounds are like music to my ears," Maryanne says. "We're a team, she and I...helping each other get through the day. Having Jessica has put me back in a caregiver role again, given me purpose. With that purpose, it distracts me from the pain, loneliness, and isolation I found in the chair."
Glassie was placed with Corinne after her multiple sclerosis began to impact her mobility. "My days now are spent with a new purpose. I wake up to a beautiful, silly, sneaky, smarter-than-me monkey who brings me so much joy," Corinne says. "She also brings me the phone, remote control and anything else my laser points at."
Craig and Minnie have been together for over six years. "Minnie has made my life so much richer and fuller," Craig says. My independence has increased and I have the security of knowing that Minnie can assist with tasks that would be impossible for me without her."
All Helping Hands monkeys were raised in foster homes from infancy. Here, they learn to live in a human home and acquire basic behavioral skills like bathing.
Here, a trainer uses a laser pointer to indicate to the monkey helper that she should throw a water bottle into the trash. Monkey helpers train for three to five years on average, beginning with more simple tasks such as this one, and then working up to more complex commands.
When monkeys are not training, they enjoy downtime in the playroom with their trainer and other monkeys. Capuchin monkeys naturally enjoy manipulating objects and love playing with things like baby toys and bubbles.
Capuchin monkeys are very social animals. This, along with the fact that they are natural tool users, played a big part in why they were selected for Helping Hands.
The Senate may vote on the Budget Resolution tonight.
Please call!
Dial the Capitol Switchboard 1-888-245-0215 [toll-free] or 202-224-3121 and ask for the office of your Senators.
Message to Senators:
Please vote NO on the House-passed Budget Resolution.
People with disabilities disproportionately rely on government services to live, learn and work in their communities. These services assist many people with disabilities to live independently in the community avoiding costly institutional care and increasing the opportunities to work and pay taxes.
This budget proposal would set rigid limits on Medicaid and food stamps/SNAP, resulting in a 35 percent cut for Medicaid by 2022 and an almost 20 percent cut in food stamps.
Starting in the second decade, the House budget would turn Medicare into a voucher program, doubling the burden of payment for its beneficiaries.
Over 10 years, it would slash $4.3 trillion in needed services, about two-thirds of which help low-income people.
What is at stake?
Medicaid -
The proposed plan shifts the cost of Medicaid to low-income consumers, including people with disabilities, and cuts the program by a third over the next 10 years. The proposed plan converts Medicaid to a block grant which will cap funding regardless of health care cost inflation over time.
The proposed plan eliminates the current Medicare structure and transforms the program into a voucher system. It shifts the cost of services to the beneficiaries, almost doubling amount that individuals pay out of pocket for their ongoing health care.
The proposed plan repeals and defunds the Affordable Care Act (ACA) including programs that are vital for people with disabilities. For example, the CLASS Program and and the Community First Choice Option are two ACA provisions targeted at expanding home and community based options for people with disabilities.
Thousands of people with disabilities, their families, caregivers, seniors, wounded veterans and healthcare professionals are expected to attend Abilities Expo on Friday, April 15, through Sunday, April 17, 2010 at the Los Angeles Convention Center. Admission is free and show hours will be Friday 11 am to 5 pm, Saturday 10 am to 5 pm and Sunday 11 am to 4 pm.
Abilities Expo has put together an impressive line-up of exhibits, celebrities, workshops, experts, events and activities to appeal to the full spectrum of people with disabilities, from children to seniors and everyone in between. In addition, there will be free hearing screenings onsite (limited appointments available). Complimentary loaner scooters and wheelchair repair will also be available onsite during show hours.
"It is our privilege to provide this forum for the Community of people with disabilities in Southern California to come together and gain access to life-enhancing technologies, education and resources," said David Korse, president and CEO of Abilities Expo. "Between the adaptive events, the interactive assistive technology pavilion, the dynamic workshops and the thousands of products and services on display…this is a must-attend for everyone in the Community."
The Latest Products and Services
Attendees will experience cutting-edge products and services for people with a wide range of disabilities. They will find mobility products, medical equipment, home accessories, essential services, low-cost daily living aids, products for people with visual and auditory impairments and much more. The Assistive Technology Pavilion will feature the latest AT products for people with wide ranges of physical, sensory and developmental disabilities and is anchored by the Team of Advocates for Special Kids (TASK) AT Showcase. The showcase will not only feature an array of breakthrough assistive technologies, it will allow Expo visitors to experience them hands-on.
A series of compelling workshops which address pressing disability issues will be offered free-of-charge to all attendees. Sessions will focus on travel, healthcare, social interactions, fitness, computer accessibility, finances and that is just for starters.
Abilities Expo does not merely inform, it engages and it entertains. Attendees of all abilities can test their skills on a fun wheelchair obstacle course, enjoy canine assistance demos, play adaptive sports and learn to wheelchair dance ballroom-style. For the kids, there will be adaptive pinball, face painting and visits from Norky the Peneagle and Patches the Balloon-making Clown. To round it out, there will be the coronation of Ms. Wheelchair California and an Artist Market showcasing the works of local artists with disabilities.
Celebrity Encounters
Famed actor, television icon and best-selling author Henry Winkler will share his personal story about his mother's struggle with upper limb spasticity in a compelling workshop entitled Understanding Upper Limb Spasticity on April 16.
Dr. David Kipper, medical expert, radio celebrity and doctor-to-the-stars, will answer your health-related questions in the Q&A workshop Ask The Doctor on April 16.
Angela Madsen, Paralympian and World Record Holder for Rowing, will show off her ocean rowing boat, RowofLife, and introduce attendees to the exciting sport of adaptive rowing.
Give Back to the Community
Abilities Expo participants can bring their old cell phones, iPhones, iPods or iPads to donate to the Gift a Voice Project, a program that refurbishes or recycles this equipment so that they can be used by people with communication disabilities.
A friend of mine posted this today on facebook and it truly touched me that she posted this. My friends a good egg!
Quite a rare material. Helen Keller, the American author, political activist and lecturer, and her instructor and lifelong companion, Anne Sullivan, appears in a Vitaphone newsreel from 1930. In this footage Sullivan shows the way how Helen Keller learned to talk. The final line of this footage, "I Am Not DUMB now!" is somewhat touching.
A dozen protestors from disability rights group ADAPT gathered at Gov. Rick Perry's office this afternoon to block the entrances. Organizers say they wont leave until Perry pledges to oppose cuts to community services.
Josue Rodriguez sat in his motorized wheelchair on the south steps of the Capitol today and urged an audience of hundreds of disability advocates to continue fighting for their freedom. "What we need are vital services that keep us independent," the El Pasoan said.
The group called on lawmakers to use the Rainy Day Fund, to raise new revenue and, above all else, to not cut community-based services for the disabled. Over and over again the crowd chanted, "No cuts! No cuts!"
Lawmakers trying to fill a budget hole estimated between $15 billion and $27 billion are considering a nearly 25-percent reduction to health and human services spending, which would mean major cuts to community-based services that help Texans who are disabled. Gov. Rick Perry and other Republican leaders have promised to deal with the budget shortfall through cuts, without raising taxes and without dipping into the state's emergency savings account, called the Rainy Day Fund.
State Rep. Elliott Naishtat, D-Austin, told the group to remind other lawmakers that cutting services to the disabled that keep them out of hospitals and institutions and in their communities will save more money in the long term. "Cuts to community services are penny-wise and pound-foolish," he said. And cutting those services, he said, hurts not only the disabled consumers but also the family members and other loved ones who provide in-home care.
State Sen. José Rodríguez, D-El Paso, said cutting funds for disabled Texans is a price the state cannot afford to pay. "We are doing harm to one of our most vulnerable sectors of our society," he said.
Jody McIntyre has accused the police of premeditated violence (Photo: Jane Mingay)
My esteemed colleague Toby Young makes a brave attempt to stand up for Ben Brown’s interview of Jody McIntyre on BBC News 24. He really needn’t have bothered. The clip speaks for itself. To be honest, Brown looked like a police stooge when he repeated their claim that prior to the clip on YouTube McIntyre was rolling his wheelchair towards them. “Aw, diddums, did the man with with Cerebral Palsy scare you, and you in your riot gear and all” would have been the right response to whichever Metropolitan Police flak had the chutzpah to offer up that nonsense. But when McIntyre responded:
I can’t physically use my wheelchair myself. My brother was pushing me.
it was game, set and match to him. But the whole government should have shivered when McIntyre asked Brown:
Do you seriously think a person with Cerebral Palsy in a wheelchair can pose a threat to a police officer?
For this is the next wave of protest they face. There are high profile benefit cuts coming for people with disabilities – billions of pounds of cuts to Disability Living Allowance to start with. And, as I always remind Coalition ministers and their advisers, a billion pounds from welfare is £1,000 a year from a million people. But a particularly nasty one was sneaked out yesterday. The Independent Living Fund will be abolished from 2015. This fund of nearly £300m a year pays an average of £300 a week to people to support them staying independently in their own homes. If it didn’t exist, it would be exactly the kind of thing that would be branded as a Big Society welfare reform – it helps individuals, and it saves the state millions since the alternative is expensive residential care. Instead, it’s being cut.
What I don’t think the Government – or the mainstream media – were aware of until Jody McIntyre’s interview is quite how articulate and media-savvy modern disability campaigners are. As the waves of cuts – to benefits, to the ILF, to social care provided by councils – impact on people we are going to see the Coalition with their immovable case that there must be cuts come face to face with people with disabilities and their irresistible case that the most vulnerable should not pay the price for a bankers’ crisis.
While Frank Field was asked to “think the unthinkable”, today Iain Duncan Smith is going one better – he is “doing the unthinkable”. I look forward to many more blogs from Toby Young explaining precisely why the protesting public have got the wrong end of the stick about a change to the system which is really in their own best interests.
Adapt is an national advocacy group that focuses on accessible transportation and integrated support services for Americans with disabilities. It is the theme of a rare photography exhibit that dates back more than 25 years.
Years of protesting against the lack of accessible transportation started in 1985 in L.A. Photographer Tom Olin documented significant moments of the disability rights movement.
"Adapt is a very important organization. We call it the militant arm of the disability rights movement where people with disabilities come together, and we use non-violent civil disobedience to assure that certain demands, to assure that people with disabilities get equal access happens," said Rahnee Patrick, director of independent living at Access Living and a member of Adapt.
"We have been very successful prior to the Americans With Disabilities Act, several cities that had chapters of Adapt were able to get mainline transportation made accessible for people with disabilities without any sort of law that was nationwide due to the protests that people had created in their local communities," Patrick said.
Olin did not have a disability when he started photographing Adapt's protests. Curator Riva Lehrer says Olin's work is rare.
"There's something about the way he sees that he retains the strength in every single person that he depicts that, you know, you see this a lot of vulnerability and a lot of risk in this room, yet everyone sort of has this veracity and dignity. And I think it's because besides just his strength as a photographer, that he's so deeply steeped in what all this means is that there's never a moment where he's coming for the outside and manipulating this for unfortunate reasons," Lehrer said.
Olin's work is not just unique. It's a part of history.
"We really want to get this out to people because people do know about the other civil rights movement and a lot of the photography of other civil rights movements has been really key in being educational tools, rally points resonant images that have changed people's minds, and I think hardly anybody outside of our community and even in our community knows this work," said Lehrer.
Tom Olin will speak at Access Living, where his exhibit is being shown Friday evening. Admission is free.
A national advocacy group for the blind has called for an investigation of alleged "pervasive and ongoing discrimination" at Pennsylvania State University in the availability of technology-based services for blind students and faculty.
"Penn State's persistent failure to abide by the law has resulted in gratuitously denying its blind students and faculty equal access to information and thereby to an equal-education opportunity," the complaint states.
It is the first such comprehensive complaint filed by the federation against a publicly funded university, group spokesman Chris Danielson said.
"Penn State is certainly not out of the ordinary," Danielson said, adding that his group hoped the complaint spurs changes at other schools.
Annemarie Mountz, a Penn State spokeswoman, said the university could not comment on the complaint because officials had not yet reviewed its claims.
"Issues of equity and accessibility are immensely important, and we take them very seriously," Mountz said in an e-mail, adding later: "It is Penn State's policy not to discriminate against qualified persons with disabilities in its admissions policies and procedures or its educational programs, services, and activities."
In the complaint, the federation alleges that the university's online library catalog is not fully accessible for blind students.
University websites, including for the Office of Disability Services, are not fully accessible for the blind, the federation claims.
Course-management software, which allows students and professors to interact online and perform course-related functions, also "is almost completely inaccessible to blind users," the complaint says.
Blind faculty members must rely on the assistance of a sighted person to use "smart" podiums that interface with laptop computers, the complaint says.
There is only one ATM on the main campus with audio output that a blind student could use with their identification cards, which can be used as debit cards through a program with PNC Bank, the federation alleges, adding that the PNC website is "nearly inaccessible" for the blind.
Danielson explained that the blind can access websites through software that reads and describes what is on a Web page. But the websites described in the complaint don't work correctly with the software, he said.
"This technology is not inherently inaccessible," he said. "This isn't something the university can't fix. They've just gone about it incorrectly."
On September 29, 2010, Senator Christopher Dodd (D-CT) and Senator Richard Burr (R-NC) introduced S. 3895 to address abuse through the use of restraints, seclusion and aversive interventions in schools. It is well-documented that the use of restraint and seclusion in schools is neither effective nor therapeutic. Instead, it is mentally and physically abusive. Thousands of cases of restraint and seclusion occur in our nation’s schools annually, often with tragic results, including the death of children.
COPAA is appreciative of Senator Dodd and Senator Burr’s efforts to pass a bill in the Senate that sets forth minimum standards for states to protect children from what has historically been the unacceptable use of these methods and set up a structure to prevent future abuse. However, we have grave concern regarding the provision that allows restraint and seclusion as planned interventions, and believe the current bill language weakens parents’ and children’s existing rights.
1) Contrary to popular belief, inclusion of restraint or seclusion on an IEP, behavior intervention plan, or safety plan will not protect students or make it easier for parents to argue that use of restraint or seclusion is abusive and constitutes a denial of FAPE.
Inclusion of restraint and seclusion in an IEP legitimizes these techniques as educational “methodologies” and makes abuse of them very hard to combat. Inclusion of restraint and seclusion in the IEP may provide eligible students access to remedies under IDEA, but the remedies are limited. Furthermore, the language of this bill will establish the standard of care for any other claim.
2) There is explicit legal danger in failing to prevent restraint and seclusion as planned interventions.
Couture v. Board of Education of Albuquerque Public Schools, 535 F.3d 1243 (10th. Cir. 2008) a and C.N. v. Willmar Public Schools, Independent Sch. Dist. No. 347, 591 F.3d 624(8th Cir. 2010), are two cases that vividly illustrate the legal danger inherent in explicitly failing to prohibit restraint and seclusion as a planned intervention in IEPs or in permitting them as a planned intervention. Once restraint and seclusion are included in an IEP, the practices are given the imprimatur of legitimacy simply because they were on the IEP. Parents who wish to challenge restraint and/or seclusion in an IEP face the hurdles inherent in exercising their due process rights, which include access to experts (whose costs are not reimbursable to parents), access to legal assistance (often beyond many families’ financial means and not always geographically available), and the added deference accorded to educators.
In other words, if a “technique” is in the IEP, even if using that technique worsens the behavior it was supposed to improve, it is up to the person who employed the technique in the first place to decide whether to continue its use. And even if that decision was “pedagogical misjudgment” the parents/children cannot recover for resulting injury.
3) The IDEA requires that to the extent possible, services included on a student’s IEP be based on peer-reviewed research.
Proponents of restraint and seclusion have cited no research, peer-reviewed or otherwise, to establish that restraint and seclusion serve any legitimate educational purpose or that they are even effective. In fact, the only peer-reviewed research of which COPAA is aware demonstrates that restraint and seclusion do not have any treatment or educational value and that no amount or type of staff training can assure their safe use. (Haimowitz, Urff, and Huckshorn, 2006; Harper, 2003; Nunno, Holden, and Tollar 2006).
4) An IEP is supposed to be the prescription for the student’s education — an IEP consists of goals, specially designed instruction, supplementary aids and services and supports for school personnel to assure a student receives educational benefit.
The need for restraint or seclusion is caused by the absence of appropriate educational interventions, or the failure of appropriate educational interventions. In purely practical terms, in a due process hearing, it is much harder to challenge something that doesn’t need to be in the IEP than to advocate for an intervention to be added to the IEP.
5) Planned use of restraint and seclusion as an intervention is inconsistent with preventing and reducing their use.
Including restraint and seclusion in IEPs will increase, rather than decrease their use, thereby undercutting the purpose of the legislation. Including the techniques in an IEP may in fact, not only increase, but mandate their use. Additionally, a comparison of the settings in which children receive services offers persuasive reasons why restraint and seclusion should be prohibited as a planned intervention in schools. Restraint and seclusion cannot be included as planned interventions in treatment plans in children’s mental health and other health care settings; they are harmful and non-therapeutic as planned interventions. Notably, these are settings with clinical staff.
6) In our members experience with mental health, institutions serving individuals with developmental disabilities and in the ICF-MR regulations; trying to allow restricted use, then regulate and oversee, has been a failure and resulted in simply authorizing the use of restraint and seclusion.
Furthermore, restraint and seclusion was always approved as a matter of professional courtesy to the ordering professional even where there was a mandatory system of review and approval. In 15 years of data reviewed its use had never been denied or limited.
Policy Recommendations for S. 3895
1. Language should be clear that the intent of the legislation is to prevent and reduce seclusion and restraint and that an IEP should never include or require the use of such techniques.
For students who have restraint and seclusion imposed upon them for exhibiting behaviors that place selves or others in danger of serious bodily injury – the student support team, or when applicable the IEP team, shall meet to develop a positive behavior intervention plan based upon the results of a comprehensive, data-driven functional behavioral assessment (FBA) by a qualified team of professionals.
The positive behavior intervention plan shall include a clearly defined set of strategies, agreed upon by the team, that:
a) are based upon the conclusions of the FBA
b) address the environmental changes, modifications to instruction, the physical or social environment, or other supports intended to proactively prevent the dangerous behavior,
c) promote pro-social alternative and replacement behaviors,
d) define consequence strategies, including de-escalation techniques to manage and reduce the effectiveness of the problem behavior if it does occur to reduce or prevent the need for restraint or seclusion,
e) considers any medical and/or psychological conditions of the student known by the parents or members of the IEP team that may be contraindications for behavior interventions, and,
f) establish the method for collecting data to evaluate the success of the plan and the date by which the plan’s implementation and effectiveness will be reviewed by the team.
2. The definition of “student” in the private school context should not be a student who is enrolled in a private school and who is “receiving a free appropriate public education at the school…”
Clearly, whether or not a student is receiving FAPE should not be the defining characteristic of whether he or she is a student, since the student could be enrolled and might or might not be appropriately receiving all the special education and related services on his or her IEP.
3. The bill must specify that an FBA be conducted or reviewed within a specific time period following the debriefing session.
Language should require that an effective FBA have been conducted and the resulting BIP implemented with fidelity prior to the beginning of the two year countdown. Otherwise, it is quite possible that the student’s history of dangerous behavior could be the result of inappropriate and/or ineffective educational services and the student have restraint or seclusion added to an IEP because of a documented history of behavior that would not necessarily have occurred had he or she received appropriate services.
4. Finally, it is critical that technical language changes occur to assure that nothing in the Act weakens existing protections and rights under IDEA, Section 504 of the Rehabilitation Act, or any other rights or remedies otherwise available to students or the families of students under Federal or State law (including regulations).
March 2010 – COPAA applauds the House of Representatives for passing H.R. 4247, the Keeping All Students Safe in School Act. This bill will implement minimum standards to protect all schoolchildren from the dangers of restraint, seclusion, and aversives. H.R. 4247 passed by a vote of 262 to 153.
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Paul Miller, a lawyer who was born with achondroplasia — dwarfism — overcame discrimination because of his disability and became a leader in the disability rights movement, died Tuesday at his home on Mercer Island, Wash. He was 49.
The cause was cancer, said his wife, Jennifer.
More than 40 times after graduating from Harvard Law School, Mr. Miller received rejection letters from law firms. One time, he said, he was told the firm feared that clients would see his hiring as a “circus freak show.”
But Mr. Miller went on to become an adviser to two presidents — Bill Clinton and Barack Obama — a law professor and an expert on the intersection of disability law, employment discrimination and genetic science.
Andrew J. Imparato, president of the American Association of People With Disabilities, said of Mr. Miller, “He was the person in the White House who recruited folks with disabilities to take positions all over those administrations — assistant secretaries, deputy assistant secretaries, commissioners.”
Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said.
In recent years, Mr. Miller focused on tensions between disability rights and genetic science. In a paper titled “Avoiding Genetic Genocide,” Mr. Miller criticized scientists for what he saw as their eagerness to use genetics to produce “perfect” humans.
“Good health is not the absence of a disability,” he wrote. “Scientists caught up in the excitement of genetic discovery can forget that life with a disability can still be a rich and fulfilling life.”
Its purpose was “to bring attention to the risk of individuals losing their jobs if information about their future health risks were disclosed,” Dr. Collins said. “And the persistence paid off: after more than a decade of frustration, the Genetic Information Nondiscrimination Act was finally signed into law in 2008. Paul was one of its biggest heroes.”
Paul Steven Miller was born in Flushing, Queens, on May 4, 1961, and grew up in East Northport on Long Island. His father, Stanley, was a textile engineer; his mother, Barbara, a school psychologist.
Mr. Miller graduated summa cum laude from the University of Pennsylvania in 1983 and received his law degree from Harvard three years later. He then began his difficult job search. He was eventually hired by a Los Angeles law firm, Manatt, Phelps & Phillips. By 1990, he was director of litigation for the disability rights law center at Loyola Law School in Los Angeles. That led to his position in the Clinton administration.
In 1997, he married Jennifer Coletti Mechem, who at the time was disability policy coordinator at the Department of Education; Ms. Mechem is hearing impaired.
Besides his wife, Mr. Miller is survived by two daughters, Naomi and Delia; two sisters, Marjorie Piquiera and Nancy Miller; a stepsister, Susan Wolfert, and a stepbrother, Marc Freyberg.
When the University of Washington named Mr. Miller its Henry M. Jackson professor of law in 2008, his colleague Anna Mastroianni spoke at the ceremony. “Paul Miller may have been born a dwarf, but in reality he is a giant,” she said. “We are all better for seeing a little further from the perch of his shoulders.”
Community Living BC, a provincial crown organization, supports innovation that advances citizenship of people with disabilities in B.C. This year, CLBC recognized the innovative work of Barb Goode, one of the earliest community organizers among people with disabilities.
In 1986, Barb’s efforts led to the Supreme Court decision that prevents the sterilization of people with intellectual disabilities for non-medical reasons; in 1992, she became the first Canadian with a disability to speak to the UN General Assembly.
But it is perhaps the less momentous achievements of Barb’s career that will be her most lasting legacy: a profound change in the way our society values and treats people with developmental disabilities. In her travels to places as far-flung as New Zealand, Kenya, Jamaica, Italy and Amsterdam, her messages of self-advocacy and full citizenship for the disabled have reached a global audience.
Barb doesn’t describe herself as an activist, or consider her accomplishments particularly special. “I always just did what I wanted to do,” she says. “I’ve just been trying to get along like anyone else.”
She has been an enthusiastic volunteer since she was 12 years old. During the landmark Rights Now project, her grass-roots community organizing was a powerful force in breaking down stereotypes about people with developmental disabilities.
Throughout her life, she has been inspired and encouraged by her parents, she says. “They always told me, ‘Don’t quit. Just keep going. Believe in yourself.’”
Although “they’re in heaven now,” Barb knows they are proud of her for recently winning a WOW!clbc award to recognize the difference she has made for so many people. “I miss them. But I still hear their voices every day.”
The annual WOW!clbc Recognition Award is awarded by CLBC in recognition of the contributions honourees have made and continue to make towards ensuring community inclusion and full citizenship for people with development disabilities. Every year, the organization honours exemplary individuals in British Columbia who have made significant contributions to “good lives in welcoming communities.”
Today, Barb sits on six different volunteer committees, where her creativity is matched only by her passion to contribute. “I don’t want to be a token member, just being quiet and looking pretty. I want to be involved. I never want to retire.”
One of the causes she is most passionate about today is the adoption of ‘plain language,’ making all forms and documents that people with developmental disabilities must complete or read more accessible. She’s quick to ask, “Can you break that into two sentences?” when a question is unnecessarily complex.
“There are so many forms that people with disabilities are expected to fill out, and when they get something wrong, the forms are sent back,” she says.
Although she’s been recognized by world leaders and compared to heroes such as Terry Fox and Rick Hansen, Barb is very humble about her work.
“I still don’t see it as being that special.” As her parents told her, she says, “You just have to do what you want to do, even when other people think you can’t. You just keep trucking along.”
Inclusive communities benefit all
Community Living BC (CLBC), a provincial crown agency mandated under the Community Living Authority Act, delivers supports and services to adults with developmental disabilities and their families. CLBC is working to create communities where people with developmental disabilities have more choices about how they live, work and contribute.
Inclusiveness and a diverse population can add to the social and economic success of communities and improve the quality of life for all citizens. Inclusion means that all people, including those with disabilities, have a variety of opportunities to contribute to their communities through key roles such as employee, friend, spouse, volunteer and leader.
The result of inclusion is that people with disabilities benefit from society in ways that are equal to others. By being included, individuals with developmental disabilities can also “include” others into their way of seeing and understanding the world, enriching life for all.
**Please spread this post around to employers,friends,family! If your not sure how copy the address in the web browser and paste in and email,IM or where ever! :-)***
DID YOU KNOW? People with disabilities represent the third largest market segment in the U.S., surpassing Hispanics, African Americans and Asian Americans, as well as Generation X and teens. Add in their families, friends and associates, and you get a trillion dollars in purchasing power.
Data on the employment status of people with a disability
In June 2008, questions were added to the Current Population Survey (CPS) to identify persons with a disability in the civilian noninstitutional population age 16 and older. The addition of these questions allowed BLS to begin releasing monthly labor force data from the CPS for persons with a disability. The collection of these data is sponsored by the Department of Labor’s Office of Disability Employment Policy.
Publication of CPS disability data began in February 2009 with the issuance of labor force data for January 2009. Beginning with the release of the January 2010 data on February 5, 2010, information on the employment status of persons by disability status was included as part of the monthly Employment Situation news release in table A-6. Additional information is available in an annual news release focusing on the employment status of persons with a disability.
Explanatory materials are available on the frequently asked questions page. These materials provide information on comparisons with other data sources, variability of the data, and the types of data available. Additionally, links to historical data and alternate formats are located here.
In support of the What Can YOU Do? outreach effort, the Campaign for Disability Employment is pleased to present the Campaign for Disability Employment’s “I Can” public service announcement (PSA). This flagship PSA was produced specifically for the What Can YOU Do?
Campaign!
It features seven real people – not actors – with hidden and obvious disabilities, demonstrating what they “can do” on the job when given the opportunity. Intended for television broadcast, we would like to see this PSA and its inspiring message distributed as widely as possible. We invite you to share it with others so we can all remember that at work, it’s what people can do that matters.
* Nearly 50 million Americans have a disability*
Blake Watson’s "Meet Sue" Wins the What Can YOU Do? Video Contest.
To celebrate the launch of the Campaign for Disability Employment, aspiring filmmakers were challenged to enter the What Can YOU Do? Video Contest and produce their own 60-second video in support of the What Can YOU Do? public education campaign.
The national video competition, which attracted more than 130 videos promoting the talent and skills that people with disabilities bring to America’s workplaces and economy, was held in support of the Campaign for Disability Employment’s national effort to increase the employment of people with disabilities.
The Campaign for Disability Employment congratulates Blake on the achievement of being selected as the overall winner of the What Can YOU Do? Video Contest. Blake’s innovative video, “Meet Sue”, reflects the spirit of the Campaign and showcases Blake’s talents and abilities. Blake reminds everyone that people should be judged only by “the content of their character”, as Martin Luther King, Jr. called for decades ago.
The Campaign for Disability Employment thanks Best Buy for sponsoring the prize for the What Can YOU Do? Video Contest! The success of the What Can YOU Do? Video Contest was due in part to Best Buy, the nation’s largest consumer electronics retailer and an employer that includes and values all employees for their talents, ideas and innovative approaches. Showing their support for the What Can YOU Do? endeavor, Best Buy partnered with the Campaign to sponsor a $1500.00 Best Buy gift card which was awarded to Blake Watson during an in-store award event hosted by the Flowood, MS Best Buy store.
We encourage everyone to forward the “Meet Sue” video to as many people as possible and to share the message that at work, it’s what people can do that matters.
PEOPLE WITH DISABILITIES:
What can YOU do?
Work is fundamental to our lives. It means so much more than a paycheck—it offers purpose and the opportunity to lead an independent, self-directed life for all people, including people with disabilities.
People with disabilities have the skills to pursue meaningful careers and play an important role in America’s educational and economic success. In fact, experience with disability can offer a competitive edge when it comes to work. If you are a person with a disability, only you can define your own limitations. High expectations are essential to success. Organizations exist that can help you seek employment, identify the tools you need to be productive on the job, and understand your right to be evaluated on your ability, not disability. Because after all, at work it’s what people can do that matters.
YOUTH WITH DISABILITIES:
What WILL you do?
Work is an important part of people’s lives. It means more than just getting paid.It means being able to make your own choices about how you want to live your life.
At work, it’s what people can do that matters. If you are a young person with a disability, only you can decide your limits. You can work in a wide variety of jobs and play an important role in America’s economy. In fact, experience with a disability can help in a job or in starting a business. Today more than ever, businesses need people who can think differently about how to solve problems and get the job done. People with disabilities do this in America’s workplaces every day – and so can you.
So set your sights high! Along the way, remember that resources are available to help you seek employment, succeed on the job, and understand your right to be judged on your ability, not disability.
Today 300 ADAPT activists called on Speaker Nancy Pelosi to liberate women with disabilities from institutions by supporting the Community Choice Act. We covered all the entrances at 1st and Constitution NW in DC where Pelosi was receiving the Alice Paul award at a luncheon. Alice Paul was a first wave feminist leader and the annual award is sponsored by the Sewell Belmont House.
68.4 % of all nursing home residents are women. You can bet they would rather be in their own homes with services and supports. Most are seniors and women with disabilities and definitely not rich. These women are not exactly on Speaker Pelosi's high priority list.
Sadly these women are also not high on the priority list of most feminists. All the women in ADAPT and many women with disabilities around the country were stoked about today's action. Most of us are feminists and would love to build links to a women's movement that, for the most part, ignores us.
What's the story here? Women with disabilities are among the most excluded and oppressed in the country. One would think the women's movement would be all over us. Not.
Instead it is often conservatives who attempt to build political alliances with us. The ADA was signed by President Bush 1 and President Bush 2 implemented and funded Money Follows the Person to get people with disabilities out of institutions, receiving services and supports in our own homes.
We still cannot get Speaker Pelosi to support the Community Choice Act and mainstream women's groups keep us off their agendas.
When will the women's and progressive movements welcome all excluded groups?
In the meantime...the women of ADAPT will continue to come out and rock and roll...until we Free Our People from nursing homes and other institutions.
If Alice Paul were still alive, she would have been in the streets with ADAPT.
Chavia Ali, center, shown in her family home in Aleppo, works to improve the lives of the disabled with the support of a trust run by the Syrian president’s wife.
'For five years, Chavia Ali’s attempts to start a disability rights group were thwarted — by prejudice, a lack of money and the Syrian government’s stranglehold on civic life. The government gave her a license, but prevented the group from meeting because of what Ms. Ali believes was a whisper campaign against her, a Kurd with a growing profile.
Then everything changed.
Last year, Ms. Ali was told that a third of her budget would be paid by a group led by Asma al-Assad, the wife of the Syrian president, Bashar al-Assad. Now Ms. Ali, 29, is everywhere, giving television interviews, speaking at ministry conferences and having her picture taken with the first lady.
The reversal of her group’s fortunes is part of an overture that government officials have described as a new embrace of civil society.
But the embrace is complicated. Even as doors have opened for a few people, like Ms. Ali, they have shut with increasing frequency on activists demanding greater political rights, according to human rights lawyers here. While some rights advocates welcome any opening, no matter how small, others say it extends only to groups that pose no challenge to the established order.
“Civil society means free people create free initiatives,” said one Syrian activist, one of many who, fearing government reprisal, requested anonymity. “How can un-free people do that?”
Ms. Ali embodies the conundrum. Her cousin was arrested this summer by the security services during one of their regular sweeps through Kurdish villages, but she refuses to talk about what happened.
“Some ideas you can’t touch,” she said. “I don’t want to go outside of my case. I am working on disabilities.”
It is a quandary faced by activists across the Middle East. In the narrow alleyways of civic life permitted by authoritarian governments in the region, opportunities exist as long as certain limits are observed. While foreign aid groups often cheer the explosive growth of organizations that help women, children or the environment, there are questions about whether the groups can change the political order.
As the world watches Syriaemerge from years of international isolation, Syrians are watching the government play its strengthened hand at home.
“We are seeing changes,” said Bassam Haddad, director of the Middle East studies program at George Mason University. “The number of associations that are emerging is increasing. The number of concerns that are allowed to become public is also increasing. The whole process is blessed by the government. It has good intentions but built-in structural limitations.”
Professor Haddad said that in the 1990s, during a similar embrace of civil society groups, activists knew the changes were cosmetic but assumed that the very existence of new groups might hasten change. Few people have those illusions today, he said.
“I think the first thing that Syrians need to see is an end to arbitrary rulings that put away people based on their viewpoints,” he said. “That is something that stifles any kind of public debate about the important issues.”
Many rights advocates go further, dismissing the talk of civil society by the government as window-dressing while it continues to arrest Islamists, Kurds and other political opponents, along with the lawyers who represent them.
Civil society figures who cross the line, like Muhannad al-Hassani, can end up in jail. Mr. Hassani, a lawyer who used to monitor the trials of dissidents in the Supreme State Security Court, was disbarred for life last year, and in June was sentenced to three years in prison on charges that included “weakening national sentiment.”
Mrs. Assad’s efforts put a softer face on her husband’s policies and, within limits, appear to be doing some good. An organization she directs, the Syria Trust for Development, finances groups that work with women, rural residents, children and entrepreneurs. Its Web site says the trust is “at the forefront of the emerging N.G.O. sector in Syria, at a time when the country is actively pursuing a substantial agenda for change.”
The new groups might represent progress, but they also fill a need, as Syria copes with growing numbers of impoverished citizens. “The cultural reliance on the government for everything is not attuned to modern society,” said Imad Moustapha, Syria’s ambassador to Washington.
For her part, Ms. Ali has seized on the opening to find ways to integrate people with disabilities into society, and to help them become independent in a country that makes that nearly impossible. To spend time with her this month as she traveled around the country was to understand the depth of that challenge. Nearly everyone she met had to ask for help, to reach a second floor, to get more time to take an exam or just to be taken seriously.
Dependent on a wheelchair since contracting polio as a child, Ms. Ali began her journey as a rights activist when a college administrator laughed her out of his office when she asked him to repair an elevator.
He did not fix the elevator. She moved on to other battles.
Chavia Ali has helped Zahra Sheikhi of the village of Ayn al-Arab, who is blind, become more confident. Ms. Sheikhi has learned to play the tanbour and hopes to move away from home
One day this month in the Kurdish village where Ms. Ali was born, she visited a 27-year-old blind woman, Zahra Sheikhi, whose parents kept her and her sister, who is also blind, at home for all of their childhood, out of shame, Ms. Ali said.
With Ms. Ali’s help, Ms. Sheikhi has learned to play a lutelike instrument called the tanbour, occasionally performs in public and is hoping to move away from home. “My family is always around,” she said. “They don’t allow me to live.”
In Aleppo, where Ms. Ali lives with her parents, she visited Saghatel Basil, 33, a university student who lost his sight because of diabetes a few years ago. Mr. Basil said that Syria had recently installed traffic signals for blind people but that many of them did not work.
His disability had prompted Mr. Basil to try his hand at local government. “I am trying to improve the idea of citizenship,” he said. “It is still weak. Maybe because I’m blind, I have a big hope that things will change.”
A conference in Damascus this month, attended by Ms. Ali and the first lady, reflected another type of opening blessed by the government, the spate of recent visits by international groups.
An American nonprofit group, the Open Hands Initiative, brought young Syrians and Americans with disabilities together for what the group’s founder, Jay Snyder, said was an attempt at person-to-person diplomacy. Mr. Snyder said that his group’s trip to Syria was approved quickly and that no one from the government restricted what they could discuss.
“Part of the challenge we face in Syria,” Mrs. Assad said at the gathering, “is how do you take incredible people and incredible ideas and make them an incredible reality?”
A young man in a wheelchair, Abdulrahman Hussein, 20, offered an answer. “We should be doing something in our own countries,” he said. “We should not be sitting in a corner.”
Qamar Khaliq said he tried in vain to persuade the guard to get him a ramp so he could board the train
A train company has apologised after a disabled passenger filmed one of the guards refusing to help him board a carriage.
Father-of-one Qamar Khaliq said the train guard repeatedly refused to respond to his pleas for help at Manchester Piccadilly on Saturday.
The 35-year-old said he was left with no choice but to film the guard's reaction.
Northern Rail has apologised and is investigating the incident.
Mr Khaliq said what should have been a 10-minute journey back home to Guide Bridge in Audenshaw ended up taking him nearly two hours.
"I always arrive at least 10 minutes early to ensure I can get helped on the train without a problem. There were no platform staff around and I could not see a train guard.
"A passenger on the train got up to help me and knocked on the guard's window to say there was a man in a wheelchair who needed help.
'Police threat'
"When I asked for his assistance he made a no sign at me and said 'I can't take you, you will have to get the next one'.
"When I asked him why he refused to answer me and then refused to speak at all and just ignored me."
Mr Khaliq started to film the guard's reaction.
"Another train guard even yelled at me as I left saying the police would be coming and they would take my mobile phone off me for filming it," he added.
In the end, he said he left the station and instead boarded a bus, finally returning home at 2245 BST after initially trying to board the train for a 10-minute journey at 2036 BST that evening.
Pete Myers, head of service quality for Northern Rail, said: "We would help anyone who needs assistance. That's why we put ramps on our trains and why we have assistants too.
"I would like to apologise to Mr Khaliq. Whatever has gone on he could not make his journey without hindrance and that's not right."
ACT NOW! The proposed benefit cuts and the assessments will begin in 2013 for those on the Autistic Spectrum who are in receipt of Disability Living Allowance, Employment Support Allowance and other benefits. In addition the cuts across Local Authorities and the demise of Primary Care Trusts could have a catastrophic effect on the autism community, a group whose vulnerability already creates high levels of stress and anxiety to those involved.
Those who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with whatever ensues as a result of the cuts. We are not opposed to cuts as such and understand that cuts need to be made. However the magnitude of the changes that these cuts will bring about and how they will impact on a community that is already marginalised and discriminated against, must be taken into account.
In 2009 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the National Audit Office survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for the provision that is available in their Local Authorities and Primary Care Trusts we would like to know how much of the money being spent is on crisis management.
The cuts to budgets in Local Authorities and the demise of Primary Care Trusts are going to make it even harder for children and adults to meet the criteria to access the provision that is available. We fear that only the minimum that can be supplied to these children and adults will be what is given. We have grave concerns that there will be no new services that would directly benefit autistic children and adults, commissioned by Local Authorities and GP's, who will from 2013 hold the responsibility for commissioning services.
Where will the demise of PCTs leave the National Autism Strategy?
Who is going to ensure that GPs are suitably trained to understand the needs of autistic people?
The National Audit Office report which was published last year, stated that “eighty per cent of GPs feel they need additional guidance and training to manage patients with autism more effectively”. This refers not only to knowing more about how to communicate with individual patients, but also to having the understanding to tailor treatment programmes or interventions to reflect the needs of patients with autism.
We are calling for urgent talks with Her Majesty's Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives.
Our concerns
The cuts being made to benefits and the proposed assessments that will be carried out on children and adults who are in receipt of Disability Living Allowance (DLA) and Employment Support Allowance (ESA), in addition to the changes that will take place in other benefits, are a huge cause of concern to us. There are many issues that need urgent consideration before changes are made to the benefit system and assessments of those in receipt of benefits.
Families who live with autism often find it difficult to work. This is not because they do not want to work. This is because there is a national shortage of specialist child care providers.
We understand that the Disabled Children’s Access to Childcare (DCATCH) Pilot was extended in January of this year, but as yet we are not aware that any decision has been made by the current Government to either continue with or extend this programme. As it stands at the moment child care for families with autistic children is patchy and difficult to access.
There are also access problems with wrap around care and extended school days. Autistic children are often unable to access breakfast and after school clubs. This can make seeking and maintaining employment difficult for many families.There are significantly higher numbers of one parent families within the autism community. This again decreases the opportunities for the main carer to find and successfully maintain employment.The Autism and Education Trust published a report last year. ‘Educational provision for children and young people on the autism spectrum living in England’
Low income families
‘It is believed that families coping with someone on the autism spectrum face a higher rate of breakdown than other families. This is borne out by the statistic that 26% of lone parent families include a child with a disability (Pannell, 2006). Bromley et al.(2004) found that one out of three children on the autism spectrum were in a lone parent family. Nearly half of these families are below the poverty line and they face a tricky“ benefits trap” when seeking to improve their situation. Lone parents can struggle to attend meetings at school unless child care and sometimes transport is provided. As one parent said: ‘I am stuffed every single time because of having no transport, I just simply cannot get to things.’
‘Lone parents are also less likely to have a built-in support system of other parents to rely on for support and advice (Pannell, 2006). Not only may low-income families have different experiences with education, their children may also encounter different problems. Autism can be a factor in moving families down the income ladder. Having a child on the autism spectrum has been shown to depress the earning potential of families by a significant amount, 14 per cent in one US study (Montes, 2008). According to this research fathers of children on the autism spectrum were less likely to be in full-time employment.’Treehouse report published in 2009
The exclusion rate amongst autistic children is high. 43% of parents surveyed stated that their child had been formally or officially excluded in the previous 12 months. 55% of parents surveyed stated that their child with autism had experienced illegal exclusion.
The National Autistic Society (NAS) report ‘make school make sense’ 2006 stated that 1 in 5 children with autism had been excluded from school, and 67% of these had been excluded more than once.
There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about autism than any other type of SEN.Families who are living with autism often find it difficult to work.
Employment and Adults with Autism - the current picture
Only 15 per cent of adults with autism are in full time paid employment (Reid, B. (2006). Moving on up? Negotiating the transition to adulthood for young people with autism London: NAS) compared to 48 per cent of the whole population of people with disabilities (Labour Force survey, office for national statistics 2008). Adults with autism want to work; this suggests that the low employment figures cannot be attributed to a lack of desire to work. These statistics also clearly demonstrate that it is considerably more difficult for an adult with autism than an adult with another disability to secure full time employment. This is a very important factor which must be taken into consideration.
Autistic adults (adults with autism) want to work and with the correct level of support it has been proven that they can work. Statistics say that it is harder for an autistic adult to find employment than an adult with another disability. This is something that must be taken into account.
There are a number of key challenges that prevent people with autism from accessing work. These range from a lack of appropriate skills due to problems in accessing education and training (including social skills and work skills training) to the failure of employers to understand and make reasonable adjustments (both during the recruitment process and in the workplace) and a lack of appropriate support for people with autism to find and sustain employment.
Disability Living Allowance Assessments
We have serious concerns regarding the assessments that are to be carried out on children and adults who are in receipt of DLA.
Any changes to DLA will not only affect the person in receipt of it. The rate at which DLA is paid also affects Carers Allowance. Any reduction to the rate of DLA will make it harder for Carers to claim Carers Allowance. Carers often provide round the clock care for their autistic children and adults.
Maybe you’ve seen the public service announcements on TV. Actress Glenn
Close, her sister Jessie Close, and her nephew Calen Pick stand in
Grand Central Station wearing white T-shirts. In blue letters, Glenn’s
shirt says “sister,’’ Jessie’s says “bipolar,’’ and Calen’s says
“schizophrenia.’’ People with other diagnoses on their chests enter and
leave the frame, accompanied by their family members.
“Our single goal is to get people
talking openly and without shame about mental illness,’’ Glenn Close
said earlier this month, when she and her family members talked about
their experiences and accepted awards from McLean Hospital in Belmont
for their work reducing the stigma that surrounds psychiatric disorders.
“Say it loud, say it again and again until it has lost its power over
us. Make the unspeakable speakable.’’
The TV ads, from a campaign called
BringChange2Mind, are part of a new emphasis in the mental health
community that sees families as crucial to the success of a patient’s
treatment, and also recognizes that mental illness takes a toll on
parents and siblings. It seeks to educate family members to correct any
misperceptions they may have, and provide them support.
“It’s not just an individual who lives
with and suffers illness but a family that lives with and suffers
illness, whether that illness is breast cancer or diabetes or mental
illness,’’ said Joanne Nicholson, a psychologist at the University of
Massachusetts Medical School who specializes in family mental health.
“Families provide an incredible opportunity to promote recovery and
well-being and functioning. Families who don’t understand about mental
illness, or don’t talk about mental illness, can undermine a person’s
treatment or access to treatment.’’
Karen McGravey-Gajera knows the pain of
seeing her son and family struggle with mental illness. She is now a
family educator and support coordinator for the National Alliance on
Mental Illness of Massachusetts, the local chapter of the advocacy,
education, and support group composed of people affected by mental
illness. But eight years ago she was stunned by the change she saw in
her son. The day he had a psychotic break, running into the house and
talking about the voices he heard, was the worst day of her life. “He
was a regular everyday kid, then he turned into this person I didn’t
know anymore,’’ she said in a recent interview. “It was almost like a
death.’’
She came to NAMI’s
Family-to-Family Education Program just after her son was diagnosed with
schizophrenia. Families learn about symptoms, medications,
communication, and empathy for their loved ones
. That kind of
information is hard to get from doctors and hospitals, McGravey-Gajera
said.She found comfort
being with people who knew what she was going through, whether their
loved one had depression or schizophrenia or bipolar disorder. “For me
it was very new. I did a lot of crying in the class,’’ she said.
“There’s so much guilt. ‘This came from me, it’s my genes, and also the
thought, I can’t go on vacation because my family member is suffering so
much.’’Her son has had a
hard time with medications that never seem to work very well. He doesn’t
go out of the house, communicating with friends via Facebook. Like
other parents, she has had to let many dreams go. “When you have kids,
you think they’re going to grow up, have a job, get married, and you’ll
have grandchildren,’’ she said. “Then you hear that word
‘schizophrenia.’ And when the medications aren’t working, it’s a rough
time.’’
Families with
members who have mental or emotional disorders live on a roller coaster,
she said. On good days, they wait for the other shoe to drop. And she
worries about her other two children. “I have a younger son — he’s 11 —and he was having optical migraines. He was so afraid — he thought that
he was getting schizophrenia. He shouldn’t even know this word, but he’s
worried it might happen to him.’’And stigma of mental illness is still
strong, McGravey-Gajera said. “If somebody gets cancer, people come
over with a casserole. If somebody has a mental illness, nobody shows
up.’’
The anti-stigma
BringChange2Mind initiative was cofounded last year by Glenn Close in
conjunction with several national and international mental health
organizations. Their family’s struggle to understand Jessie’s and
Calen’s illnesses was made more difficult by the lack of understanding
that they, like many other families, had about mental illness — until it
hit home.
“We had to learn
fast if they were to survive and if we were to survive as a family,’’
said Glenn Close in remarks at an awards dinner at McLean. Close, along
with her sister and nephew, is part of a project at McLean investigating
genetic factors that may be involved in mental illness. “Mental illness
is about family,’’ she said.
Jessie
Close was ill both as a child and as a parent. She first tried to kill
herself at 16, then asked to see a psychiatrist. But that just wasn’t
done, she was told by their stiff-upper-lip, pull-your-socks-up,
don’t-talk-about-it Connecticut Yankee family. She used alcohol and
other drugs to blunt the pain of despair that followed her manic highs.
Now 56, she wasn’t diagnosed with bipolar disorder until she came to
McLean in 2004, when she was again contemplating suicide.
Jessie’s son Calen, 28, had already spent
two years at McLean being treated for schizoaffective disorder, which is
a combination of schizophrenia and bipolar disorder (and too much to
fit on a T-shirt in the TV spot, Jessie explained). As a teenager, he
lost touch with reality and his mother lost the boy she knew. “All I
knew was that Calen wasn’t Calen anymore,’’ Jessie said.Calen kept his private thoughts secret,
not telling his mother about his fears that people were plotting to harm
him. “It took a while to open up enough for my family to realize what
exactly was happening, and then I got help,’’ he said.Years of therapy and finding the right
medication helped Calen seize moments of clarity that he could recognize
as reality. He nurtured those moments until they became his enduring
reality.
“He’s got a lot of
guts, this kid,’’ his mother said as Calen talked about his journey.
“I don’t really,’’ he replied. “There’s
no choice.’’
It’s scary
being known as bipolar, Jessie said, but it’s getting easier. After
outing himself in the TV ads, Calen wonders if people will see him for
his illness rather than his good qualities.
Mental illness is “part of the human
condition,’’ former McLean president Dr. Bruce Cohen said during a
combined interview with the Close family. “It’s not going to go away, so
we’ve got to talk about it.’’With
growing evidence that the brain retains the ability to change
throughout life, more mental health specialists are talking about the
hope of recovery for people with serious psychiatric disorders. There
was a time when a schizophrenia diagnosis was considered a slow death
sentence of continuing deterioration, said David Shern, president and
chief executive of the advocacy group Mental Health America. Now earlier
detection is the goal, so people who are on course to develop a
full-blown psychotic illness can receive the support, treatment,
education, and skills needed to manage their serious episodes, which can
cause lasting damage and make recovery slower.
“If you do that, you can really start to
change the trajectory of the disability,’’ he said. “Support from family
members is critical.’’
And
the old we-don’t-talk-about-it Close family has now gone on TV and
online, saying words that used to stick in their throats.
“Family are the people we hide from the
most, the people we share with the most, the people who hide us the
most,’’ Jessie said. “I’ve done both the hiding and the sharing part. I
consider it a compliment that my family has never tried to hide me.’’
I didn't know there was a Independent Film Festival with subjects relating to different develop mental disabilities? Just another bit of info that never has the spotlight in the news or am i just missing the info each year?
(SPROUT)
We invite you to experience film and
video related to the field of developmental disabilities.
People with developmental disabilities as subjects and performers
remain marginalized in the media. The Sprout Film Festival aims to raise
their profile by showcasing works of all genres featuring this
population.
Sprout Film Festival Mission:
By presenting films of artistry and intellect, the
festival hopes to reinforce accurate portrayals of people with
developmental disabilities and expose the general public to important
issues facing this population.
The goal is an enjoyable and enlightening
experience that will help breakdown stereotypes, promoting a greater
acceptance of differences and awareness of similarities.
HISTORY:
The Sprout Film Festival was founded in 2003 and is programmed and
supported by Sprout, a NYC-based
non-profit organization, dedicated to bringing innovative programming to
people with developmental disabilities. Sprout has been making videos
related to the field of developmental disabilities since 1995 and has
witnessed the myriad benefits these videos have for this population and
the general public. In 2006 the Sprout
Touring Film Festival was founded, enabling agencies throughout the
US and Canada to design their own film festival. Sproutflix, a site
offering films from our festival to be purchased was created in 2009.
Sprout
Film Festival April 30 - May 2 in New York City
April 30- Sunday May 2, 2010 at the
Metropolitan Museum of Art, Ruth And Herald D. Uris Center For
Education, 81st St. & 5th Avenue in New York City.
The film
festival focuses on film and video related to the field of developmental
disabilities. Sprout was founded because "people with developmental
disabilities as subjects and performers remain marginalized in the
media. The Sprout Film Festival aims to raise their profile by
showcasing works of all genres featuring this population."
At the
2010 Sprout Film Festival, "Our House," "Billy the Kid," and "The Horse
Boy" are just some of the
films that will be screened. The festival will also screen a number
of short documentaries such as "Dancing with Downs" and "Rudely
Interrupted."
Here are a few clips of the films and the information-
Offense Taken:
In the Spring of 2007, when a Minneapolis Theater company put on a show
titled "Rise of the Celebretards," people with disabilities and their
allies took action. "Offense Taken" documents this community's response
to the public use of the "R" word.
Billy the Kid:
Billy the Kid is an inspiring portrayal
of adolescence, which takes an intimate look at a truly unique
character - 15-year-old 'outsider' Billy, who was diagnosed with
Asperger's Syndromeafter the making of the film.
Billy is a 15-year-old outsider growing
up in small-town Maine. He appears, in many ways, like other teenage
boys-he's into heavy metal and martial arts, is desperate to find a
girlfriend, and aspires to a career as an actor and rock star - yet
something about Billy is odd. Unapologetic about his personality, Billy
refuses to be victimized, creating his own techniques to help him
survive in an environment of conformity and prejudice.
Billy is funny,
sharp, strangely wise for his age, and remarkably candid. After filming
was complete, Billy was diagnosed with Asperger's Syndrome, a kind of
autism, and the film sheds light on this little-understood disability
and challenges viewers to imagine themselves beyond labels.Winner of Jury Prizes at the SXSW, LA, and Edinbugh Film Festivals."Many memorable dramatic films about adolescence have been made over
the decades, but few of them can match the impact of Billy the Kid, a
striking heartfelt documentary" -Stephen Farber, The Hollywood Reporter
This
video contains adult content and strong language.
Our House
Laura, Tim W., and Tim S. were born
with developmental disabilities and are now living outside an
institution for the first time. This documentary verite explores the
intimate and original view of human struggle told through the stories of
these unique individuals.
Filmed over the duration of one year by Sevan
Matossian, who lives and works at their home, the documentary strings
together a mosaic of humor and pain that unfolds under one roof.The house
where Laura, Tim S., and Tim W. live is defined by its supportive
living philosophy. Each resident of the house is under the supervision
of twenty-four hour staff support. The supportive living mantra
encourages the residents to eventually wean away from staff assistance
so they can ultimately live independently. Learning how to live on their
own however, is only one aspect of their struggles, which include
dealing with aggression and self-awareness. There are eight residents
with developmental disabilities living in the house and Our House
focuses on the three highest functioning adults.
Director Sevan Matossian
Sevan has
worked at the house for four years. Having unlimited access and a great
rapport with the residents, Sevan filmed nearly every day for one year
to track the developing story lines. With a budget of $600 for production
expenses, primarily consisting of DV tapes, Our Housewas shot
as a labor of love.
With great dedication Sevan Matossian, Greg Shields
(co-director) and Bessie Morris (producer) devoted over one year and a
half to make this very movingdocumentary. Compiling the 100 hours of
footage into 83 minutes was an editing process that took five months.
The initial inspiration to make the movie came from the intense interest
and emotional responses generated by stories about the house. The goal
of the filmmakers is to raise awareness of the experiences faced by the
developmentally disabled.This
video contains adult content and strong language.
King of Camp
video platformvideo managementvideo solutionsvideo player
A tale about Viru, a self-proclaimed
music buff, and how he survived his first day at summer camp. This video
features acting and musical performances by people with developmental
disabilities
.
This video tells the story of Viru, a
self-proclaimed music buff, and how he survived his first day at summer
camp.
The acting and musical performances feature people with developmental
disabilities. Seven of the performers in this video are from the
Berkshire Hills Music Academy and six of them have Williams Syndrome.
This video was shot during a 5-day Sprout Make-A-Movie trip. The
Make-A-Movie Program gives people with developmental disabilities the
opportunity to perform in a video.
Credits:
cast: Tori Ackley, Seth
Ehrlich, Scott Epps, Murray Greenberg, Matt Meers, Joel Peterson,
Michael Robinson, Gerard Scott, Viru Singh and Lisa Walsh.
written, directed, edited:
Anthony Di Salvo Additional
music:Burt Petrone
FILMS FROM ISRAEL: All the films in this program have English subtitles.
In addition to the annual Sprout
Film Festival in New York City, the SFF has
begun touring
the country, screening an ever-growing selection of films
to areas
around the United States. For information and updates on
periodic
screenings, please call the Sprout office toll-free 888-222-9575
or email: STFF@GoSprout.org.
Send us your email address so you can be notified when the
Sprout
Film Festival comes to a venue near you!
Sadhguru Jaggi Vasudev is a powerful character -- but wholly
unintimidating. He frequently cracks jokes upon meeting a new group of
people and his BlackBerry seems quite anachronistic given his
appearance. To someone who's barely left Los Angeles in several years,
he looks more like a character from an ancient epic film than a
world-renowned speaker and guru.He was at our office in L.A. to talk to me about the Isha Foundation,
his nonprofit that provides free medical care to rural areas in India,
promotes environmental activism, and constructs yoga schools throughout
the world.For today's Volunteer Spotlight (and since Earth Day is just a week
away), we want to recognize the incredible achievement of the Isha
Foundation, who organized over 400,000 volunteers to plant two million
trees on a mountain in India in just 25 days. This group of volunteers
also set the record for most tree seeds (850,000) planted in a single
day (a record they plan to continually break in the years ahead).Sadhguru seemed surprised when I asked him about how to encourage
people to volunteer their time. He replied that people should be even
more selfish than they already are; after all, taking care of our
environment and others helps improve our own lives.
"We're not saving the planet," he told me. "We're saving ourselves."
I
know people who arent blind who will want this (-:
T.O. artist's touchable book adds depth
to sexy subject matter
Lisa J. Murphy doesn't make ordinary books. Most books are meant to
be looked at, read only with your eyes. Hers are meant to be touched.Her book Tactile Mind, which she hand-crafted herself, is
meant to be felt up, to be precise. It is an erotic book for the blind
and visually impaired, though it can be enjoyed by the sighted as well.
A photographer with a certificate in Tactile Graphics from the
Canadian National Institute for the Blind, Murphy learned to create
touchable images of animals for books for visually impaired children.Then she realized that there was a lack of such books for adults
only. "There are no books of tactile pictures of nudes for adults, at
least the last time I looked around," says Murphy. "We're breaking new ground. Playboy has (an edition with)
Braille wording, but there are no pictures."She says that while we live in a culture saturated with sexual
images, the blind have been "left out."There are more than 836,000 Canadians living with significant
vision loss, according to the CNIB. As the population ages over the
coming decade, this number is expected to rise dramatically.
Though porn for the blind sounds like an oxymoron, Murphy assures
that it is not.Tactile Mindis half art object, half artisanal concept
book. It contains explicit softcore images that are raised from its
pages, along with Braille text and photos. The effect of the tactile,
plastic "images" is a bit like that of an ancient Greekbas-relief. Or,
somewhat less precisely, a smutty pop-up book.Creating a tactile book is far from simple, Murphy says. She
recruited some friends and photographed them wearing masks, streamers,
Christmas lights, or nothing at all. That was the easy part.Then she blew up the photos and built on top of them with clay,
being careful to mimic the photo in three (well, two and a half)
dimensions. She baked them until they were hardened, and then covered them
with a layer of special Thermoform plastic that molds to what it touches
when heated up.
A male torso from
Tactile Mind; the Braille message is informational more than lyrical —
he wears a mask, he has a muscular bare chest ...
After being heated in a special machine, the plastic-finished product
is ready to become a plate in the book. The whole process takes Murphy
between 40 and 50 hours. That's for just one image."I was just interested in the challenge," she says. "When you're
dealing with people who can read Braille with their fingertips, they can
feel every error."The book won't fit on just any shelf. It's 13 to 15 centimetres
thick when shut. It displays the visual photos alongside the tactile image based on
them. A Braille description describes what's in the photos, such as
articles of clothing. "It'll say, `He's wearing a mask,' (so readers know) he's not
missing a nose," says Murphy.At $225 per numbered, signed copy, the book is definitely upscale."People love to touch it and look at it," says Jesse Huisken,
co-owner of This Ain't The Rosedale Library. "People think it's
charming; they just can't afford it."The book also retails at fetish store Northbound Leather, where it
is at home among other things tactile. "It is something completely new, something completely different,"
says manager Enza. She says Northbound stocks other erotic toys that emphasize touch
over sight, such as a stimulation device that administers electric
current. It's controlled by manipulating a doll that's attached.The market is growing for erotic toys and pornography made for
people normally left out of the traditional demographic for such
things–that is, white, straight, able-bodied males.The Feminist Porn Awards took place in Toronto on Thursday and
Friday, honouring the kind of dirty movie that "expands the boundaries
of sexual representation on film and challenges stereotypes that are
often found in mainstream porn."Murphy's book lends, uh, depth to her sexy subject matter.Although she lists her CNIB credentials, she says it's unclear if
the advocacy organization would approve of her book. Representatives
were unavailable to comment by press time.
"I think they might be a little conservative," Murphy says.
I think any child being in horrible, intense pain like this, they need
something. And something that I knew that helped me was books.
--Mackenzie
Bearup
Alpharetta, Georgia (CNN) -- A disease that Mackenzie
Bearup compares to a bomb going off in her knee prompted the 16-year-old
to seek escape in the comfort of reading. Now she's helping thousands
of troubled children soothe their own pain -- within the pages of
donated books. "When I read, it's a real escape," Bearup says. "I
try to take myself into the book instead of in the real world where I'm
in so much pain." Her personal discovery that books could be
used to ease discomfort was an idea that Bearup ultimately chose to
share with homeless and abused children throughout the country. Bearup's
journey began six years ago when she was jumping on a bed and dancing
to TV's "American Idol." Suddenly her knee started "hurting
unexplainably, extremely bad," she recalls. The next day, the fifth
grader's knee swelled to the size of a grapefruit. After a week on
crutches, it was even worse. Her knee collapsed when she tried to walk.
After a series of misdiagnoses, doctors later diagnosed Bearup with
Reflex Sympathetic Dystrophy, also called Complex Regional Pain
Syndrome.
The disease causes the nerves and blood vessels in the
affected area to tell the brain "that the injury is still there," says
Dr. James Yost, Bearup's pain-management physician. There is no cure,
Yost said.
From 200,000 to 1.2 million people have RSD,
ranging from mild to severe, according to the Reflex Sympathetic
Dystrophy Syndrome Association Web site."The kind of pain I feel
is very hard to describe," Bearup says. "It will explode at random
times [and] when something touches it, it's like I'm getting stabbed
multiple times." Medications and treatments failed to alleviate
the constant pain in Bearup's knee. At some points, the extreme
discomfort forced her to remain in bed for months, unable to walk. The
only thing that took her mind off the pain, she says, was reading.
So
when her pediatrician told her about kids living in nearby
Murphy-Harpst Children's Center in Cedartown -- a residential treatment
center for Georgia's most severely abused children -- Bearup had an
idea.
"I think any child being in horrible, intense pain like this, they
need something. And something that I knew that helped me was books."
She learned that the center had just built a library, but had no
books to fill it with. "I asked everyone I knew to donate books,
and then I asked them to tell their friends," said Bearup, who spread
the word further by stuffing flyers inside mailboxes, placing ads in
newspapers, and launching a Web site. Bearup's goal was to donate
300 books, but she soon had 3,000
Once the library at Murphy-Harpst reached capacity, Bearup turned her
attention to other places -- providing reading material to youngsters in
homeless anddomestic violence shelters, children's homes and treatment
centers. "Reading isn't just an escape, you can learn a lot, too, and that's
very important for homeless and abused children," said Bearup. "Staying
in high school is one of the things that will help you most in life, to
be able to get a job and be able to support yourself."Since
2007, Bearup has collected and donated more than 38,000 books for
homeless and abused children in six states. With her mother's help, the
teenager launched her official nonprofit -- Sheltering Books
-- in 2009. Although donations are readily accepted, Bearup and
her mom scour garage sales in the suburban Atlanta area to collect
books. With the help of her brothers -- Alex, 14, and Benjamin,
11 -- Bearup sorts the books into categories, such as age, gender and
interest, and delivers them to shelters. She's so far donated
books for libraries and reading rooms in 27 different shelters. "Sometimes
a child will tell me how much they liked a book from a library I've
helped to create and it really makes me happy," says Bearup. "I try to
suggest books that kids will like. And sometimes, when I meet a
10-year-old girl, I'll suggest she check out the books I liked when I
was her age."
To help further encourage reading, Bearup developed
a pamphlet that suggests reading programs for groups, such as crafts
based on books and family bonding through reading. While Bearup still
lives with constant pain, she says she feels better helping others. "If one homeless or abused child finds a love of
reading through books that I've given them, then that will help them in
school and just turn their .
Children without homes
Approximately
330,000 children under age 18 are in emergency shelters or transitional
housing programs over the course of the year.
Source: U.S. Department of Housing and Urban Development
'Robert Gupta, violinist with the LA
Philharmonic, talks about a violin lesson he once gave to a brilliant,
schizophrenic musician -- and what he learned. Called back onstage
later, Gupta plays his own transcription of the prelude from Bach's
Cello Suite No. 1.
Violinist Robert Gupta joined the LA Philharmonic iat the age of
19 -- and maintains a passionate parallel interest in neurobiology and
mental health issues.
Why you should listen to him:
Violinist Robert Vijay Gupta joined the Los Angeles Philharmonic
at the age of 19. He made his solo debut, at age 11, with the Israel
Philharmonic under Zubin Mehta. He's got a master's in music from Yale.
But his undergraduate degree? Pre-med. As an undergrad, Gupta was part
of several research projects in neuro- and neurodegenerative biology.
He held Research Assistant positions at CUNY Hunter College in New
York City, where he worked on spinal cord neuronal regeneration, and
at the Harvard Institutes of Medicine Center for Neurologic Diseases,
where he studied the biochemical pathology of Parkinson's disease.
Gupta is passionate about education and outreach, both as a
musician and as an activist for mental health issues. He has the
privilege of working with Nathaniel Ayers, the brilliant, schizophrenic
musician featured in "The Soloist," as his violin teacher.
The government has proposed 108
amendments to the Persons with Disabilities Act, the overarching
disability legislation in India. Disabled rights groups are demanding a
new law instead that would guarantee civil and political rights to
disabled people and expand the definition of disability
The Ministry of Social Justice and Empowerment of the
Government of India has been holding national consultative meetings
on proposed amendments to the Persons with Disabilities Equal
Opportunities, Protection of Rights and Full Participation Act (PWD
Act). Meetings have been held in Delhi, Guwahati and most recently in
Kolkata on March 13, 2010. The debate centres on whether there should
be amendments to the existing law, or whether there should be a new
law.
The Persons with Disabilities Equal
Opportunities, Protection of Rights and Full Participation Act, (PWD
Act) of 1995 had heralded a new dawn in the lives of disabled people
in India. For the first time in the history of independent India, a
separate law had been formulated which talked about the multiple needs
of disabled people. Very soon, though, activists as well as disabled
people felt that the law had too many loopholes. However, this Act did
help disabled people to come together, forming groups as they started
making demands to implement this law. To the
delight of disability groups, India ratified the UN Convention on the
Rights of Persons with Disabilities (Disability Convention) in October
2007. This Convention marks a formal shift from the archaic medical
model to the social model, and promotes the rights of people living
with disabilities. Article 1 encapsulates the overall objective of the
Convention which is“to promote, protect and ensure the full and
equal enjoyment of all human rights and fundamental freedoms by all
persons with disabilities, and to promote respect for their inherent
dignity.”
The Convention recognises that
persons with disability are right-holders instead of passive
recipients of government schemes. In contrast, the PWD Act has a
different foundation. The PWD Act was enacted in order to implement
the Proclamation on the Full Participation and Equality of People with
Disabilities, an instrument that did not expressly recognise rights,
but laid emphasis on the need to eliminate physical and social barriers
so as to promote the participation of people living with disabilities.
The PWD Act, thus, does not internalise any of the core principles
that form the bedrock of the Disability Convention.
Retain or recast?
There is a definite need to review the existing
legislative framework in India to examine whether it adequately
promotes the rights contained in the Convention. The Disability
Convention imposes two key legislative obligations: (1) to ensure that
the rights contained in the Convention are realised and (2) to ensure
that existing laws and practices that are discriminatory towards
people living with disabilities are repealed or amended to bring them
in line with the Convention. Since its
ratification by India, there has been much discussion of the manner in
which Indian laws must be modified or harmonised to give effect to
the obligations under the Convention. While the Ministry of Social
Justice and Empowerment (MOSJE) has proposed 108 amendments to the PWD
Act including 50 new provisions, the Disabled Rights Group (DRG) led
by Javed Abidi has unequivocally stated that the PWD Act has served
its time and that there is a need for a new law. Consultations on this issue at national and zonal
levels are going on throughout India right now. Advocate Kanchan
Pamnani, who is blind herself, says that the old law will need more
than 300 amendments to make it suitable to our times, and obviously it
is better to frame a new one than make 300 changes in the old one.
Shukla Bhadury, mother of two disabled children agrees. She says it is
ridiculous that government is even considering so many amendments.
“Even in the amendments, punitive actions are not mentioned,” comments
Sritama, a law student and member of Campaigners for Inclusion. “Any
law without punitive action will not work in this country,” she says.
Let’s examine the differences between the
Disability Convention and the present PWD Act to see why such
passionate pleas to repeal this law are coming from all quarters.
Purpose
It is clear from the objectives
of the Convention that civil and political rights and economic, social,
and cultural rights stand on the same footing and that the state must
make efforts to realise both. The PWD Act barely provides for civil
and political rights and the amendments proposed by the MOSJE, too,
neglect these rights.
Construction of disability
The PWD Act adopts a narrow definition of
disability and confines it to “blindness; low vision; leprosy-cured;
hearing impairment; loco-motor disability; mental retardation; and
mental illness”. As opposed to this, the Disability Convention recognizes that “disability is an evolving concept” and avoids listing
specific conditions and severities and broadly casts “persons with
disabilities” to “include those who have long-term physical, mental,
intellectual or sensory impairments which in interaction with various
barriers may hinder their full and effective participation in society
on an equal basis with others.”
Foundational
principles (Article 3)
The core human rights
principles stated in Article 3 of the Disability Convention are
respect for inherent dignity and individual autonomy;
non-discrimination, full and effective participation and inclusion;
respect for difference; equality of opportunity; accessibility, gender
equality; respect for the evolving capacity of children with
disabilities and their right to preserve their identities.” These
general principles have been well etched in several
provisions of the
Convention.
The amendments proposed by the
MOSJE merely replicate Article 3 without incorporating the provisions
which further the principles such as those relating to civil and
political rights, rights of women and girls with disabilities, and
several other rights stated below.
Extent of
application (Article 4(1)(e))
The
Disability Convention requires the state to address discrimination on
the basis of disability even in the private sector. The amendments
proposed to the chapter on discrimination fail to expressly prohibit
discrimination on the basis of disability or spell out the
consequences for the same.
Recognized rights
The Disability Convention
expressly recognises the following rights:
Right to equality and non-discrimination. It also
recognises the need to provide for reasonable accommodation in
order to further the right to equality.
Right
of women and girls with disabilities to full and equal
enjoyment of all human rights and fundamental freedoms.
Right of children with disabilities to full
and equal enjoyment of all human rights and fundamental
freedoms. A child’s right to express views on matters affecting
him/her is also recognised.
Right to access
to the physical environment, to transportation, to information
and communications, including information and communications
technologies and systems, in urban and rural areas.
Right to life.
Right to
protection and safety in situations of risk, armed conflict,
humanitarian emergencies, and natural disasters.
Right to recognition before law. The right to
legal capacity is also included.
Right to
access justice with procedural and age-appropriate
accommodations.
Right to liberty
and security of person.
Right not to be
subjected to cruel, inhuman or degrading treatment or punishment.
Protection from exploitation, violation
and abuse, gender-based and otherwise.
Right
to respect for physical and mental integrity.
Right to freedom of movement and the right to
acquire and change a nationality.
Right to
live in the community and choose place of residence.
Right to freedom of expression.
Right to privacy.
Right to
marry and found a family.
Right to
retain fertility and other reproductive rights.
Right to education.
Right to
the enjoyment of the highest attainable standard of health.
Prohibition on discrimination on the
basis of disability in employment.
Right to
an adequate standard of living including adequate food,
clothing, and housing.
Right to participate
in political and public life including the right to vote and to
be elected.
Right to participate
in cultural life
While most of the
above rights can be gleaned from the Indian Constitution, a glance at
the existing PWD Act shows that it can hardly be termed a rights-based
legislation. It recognizes only the right to education, provides for
reservations in employment and for half-hearted measures to reduce
physical barriers. It also prohibits establishments from
discriminating against an employee because of his/her disability.
These abovementioned rights must be codified in
the form of a statute that is more likely to be invoked by people
living with disabilities and can also be used to ensure that the state
fulfils its obligations towards each of the rights. The amendments
proposed by the MOSJE fail to provide for a majority of civil and
political rights such as the right to recognition before law, right to
privacy, right to marry, right against torture etc. Discrimination
has been addressed only in transport and in-built environment. Clause
46A (2) of the proposed amendments leaves it to the government to frame
‘policies’ to ensure equal access to education, health, employment
and other public services. It fails to expressly prohibit discrimination
on the basis of disability.
Further,
the rights that appear in the PWD Act do not measure up to the standards
set out in the Convention. For instance, Sections 44-46 of the PWD
Act require establishments and the government to take “special
measures” to enable people with disabilities to gain better access to
public transport, buildings, and roads. However, such measures could
be undertaken only if it were “within the limits of their economic
capacity”. A mere deletion of these words without fleshing out how
rights may be realised will be unfruitful.
Without a strong implementation mechanism, the few
rights that have been added on will be deprived of meaning. For
instance, the Act empowers the Disability Commissioner to “recommend”
necessary action to appropriate authorities in order to address
“deprivation of rights”. This recommendation is of no binding value
and the authority can reject it thus rendering the office of the
Commissioner toothless as before.
Conclusion
The PWD Act will require a complete overhaul.
The Act must be recast to comprehensively provide for all the rights
recognised under the Convention. In a letter to the minister of social
justice and empowerment, (http://uncrpdandlaw.nileshsingit.org/blog/letter-to-hon-ble-minister-for-social-justice-and-empowerment)
the Disability Rights Group has said that the amendments proposed by
the ministry do not mirror the rights-based framework of the
Convention. In the past, the Juvenile Justice Act, 1986, was
re-enacted in the form of the Juvenile Justice (Care and Protection of
Children) Act, 2000 to give effect to India’s obligation under the UN
Convention on the Rights of the Child.
Involvement
of stakeholders is inherent in a rights-based approach and their
exclusion will be discordant with the soul and spirit of the
Disability Convention. The form that the harmonisation should take
must be thoroughly discussed and debated in consultation with various
stakeholders and the government cannot afford to take the decision
unilaterally.
With strong voices rising from
within the disability sector, can the state remain inattentive to
this demand? “It’s the decision of our lives, and we will not allow a
few officers in the ministry to force down their opinion on us
anymore, whatever comes,” says Rajarshi Chakrobarti, secretary of
Swabalamban, a West Bengal-based organization with more than 1,500
disabled members.
(With inputs from Shampa
Sengupta)
(Swagata Raha is a lawyer and
volunteers her time with Sruti Disability Rights Centre)
Aimee Mullins was born without fibular bones, and had both of
her legs amputated below the knee when she was an infant. She learned to
walk on prosthetics, then to run -- competing at the national and
international level as a champion sprinter, and setting world records at
the 1996 Paralympics in Atlanta. At Georgetown, where she
double-majored in history and diplomacy, she became the first double
amputee to compete in NCAA Division 1 track and field.
After
school, Mullins did some modeling -- including a legendary runway show
for Alexander McQueen -- and then turned to acting, appearing as the
Leopard Queen in Matthew Barney's Cremaster Cycle. In 2008 she was the official
Ambassador for the Tribeca/ESPN Sports Film Festival.
She's a
passionate advocate for a new kind of thinking about prosthetics, and
recently mentioned to an interviewer that she's been looking closely at
MIT's in-development powered robotic ankle, "which I fully plan on
having."
"the most amazing part [of MIT's h2.0
conference] was a talk by aimee mullins, an athlete, a model and an
actress with both legs amputated below the knees. she compared
prosthetic legs to eyeglasses, and in the same way that we wear designer
eyeglasses she has designer legs (she was wearing her 4-inch heel legs
for the talk). she made it clear that with enough attitude you could
pull off anything as she left the crowd dumbstruck with her presence."
A record-breaker at the Paralympic Games in 1996, Aimee Mullins
has built a career as a model, actor and activist for women, sports and
the next generation of prosthetics.
I like seeing view points from different people on the new Health Care Bill AS LONG AS ITS CIVILIZED! I am part of the Independent women's Forums mailing list. Its good for me to be reminded even though i am a disabled woman and has to visit the dr's on an ungodly basis, i need to be reminded every woman has medical needs and I should be supportive even though my needs are not part of what someone else's needs are! Below you will read on article on which i am speaking of that was written by a writer for the Independent Women's Forum
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``
It's
a sad week for those who love liberty.As you all know,
the House passed the Senate's "health care reform" bill, which radically
transforms our medical system and American society.Americans
will soon see that far from improving our health care system, this
legislation will mean more bureaucracy, higher premiums, higher taxes,
fewer job opportunities, less access to care and a lower quality of
care.http://www.iwf.org/publications/show/22541.html
As
frustrating as these developments are, they cannot be the end of the
story.At IWF, we are committed to educating policymakers
and the public that we need to embrace an entirely different approach to
health care:one that returns power to patients and
relies on market forces to control costs, encourage greater efficiency,
and improve medical treatments.It will be a long road
ahead, but we will continue to fight the battle over the future of our
health care system.
IWF
is also preparing to engage in battles over education, work place
regulation, government spending, and tax policy.The good
news is the public is increasingly open to the message that government
is trying to do too much and encroaching upon individual rights and
liberty.Now it's our job to make that case!With
your tax-deductible contribution, the Independent Women's Forum will
continue to reach out to the public and to policymakers in order to
build a greater appreciation of how limited government and economic
liberty can create a more prosperous country for all of our citizens.
Approximately 4 million Americans have
developmental disabilities. Some children with high needs, and others at
age 21 move into the special needs and adult services category and
should receive services through "Home and Community-based Waivers." In
almost all states waivers are not fully funded. This results in
waitlists and lack of portability of services from one state to another
and one county to another.
The waitlist time periods can be anywhere from five to thirty years long
(or more), depending upon the state and the type of service needed,
such as job services, a community-based program, intensive medical
needs, or a secure home in which to live.
Hundreds of thousands of individuals are on waitlists for Waiver
services. Few families can afford to pay out-of-pocket for these
services (an average of $35,000 - $75,000) per year for host or group
home placements because parents have had to leave careers to care for
their children and pay for large medical bills.
This petition is designed to get the attention and action by National
Leaders and the President to resolve this problem.
Petition:
A Resolution:
Health Care Reform Must Eliminate Waitlists and
Allow for the Continuation/Portability of Services Across State Lines
RECOGNIZE that across the country hundreds of thousands of people with
intellectual and other developmental disabilities languish on “waiting
lists” for services and supports and cannot move freely from state to
state once they acquire services, as they then go to the bottom of the
waiting lists in their new state;
RECOGNIZE that the failure to provide funding for vital and critical
services and supports creates waitlists that require years to climb to
the top of the list;
RECOGNIZE that the failure to provide services and supports can lead to
the loss of skills, unemployment, isolation, and family crises including
serious emotional, physical health problems and premature death;
RECOGNIZE that the failure to allow for the continuation/portability of
services across state lines causes people to lose their supports when
they move to another state because of job relocations, military
transfers, or the need to take care of a vulnerable family member.
AFFIRM through signature of this resolution that our country’s laws must
be changed and federal funds provided to help states eliminate the
waitlists and authorize continuation/portability of services and
supports;
SEEK SOLUTIONS and LEADERSHIP to solve this critical problem;
URGE the President and Congress to work together to eliminate waitlists
and provide continuation/portability to services and supports to this
country’s population with intellectual and other developmental
disabilities inconjunction with health care reform.
To keep informed on this vital issue, email noewait@noewait.net with the
subject, “Keep me informed.” Mail completed petitions to PO Box 411,
Parker, CO 80134, fax to 303 689-9221 or scan and email to
noewait@noewait.net
Gavin Peters is a former skateboarder who has
been diagnosed with Lyme disease. Many Ventura bands will perform at a
benefit concert and art show for Peters tonight at The Lodge to help
raise funds to pay his medical bills.
: A fellow citizen is sick and the medical bills are so far outside
the law of gravity that he needs help, because if you get ill in
America, you might lose everything.
Case in point is Gavin Peters, a former pro skateboarder. He’s now a
30-something wheelchair user due to a bad diagnosis that said he had
multiple sclerosis when he actually has Lyme disease. No free pass for a
bad guess: Peters’ medical bills are substantial and he needs help.
As they often do, local musicians — lots of them — will perform
tonight at a benefit show for all ages at The Lodge in Ventura,
officially titled the Gavin Peters Rock ’n’ Art Benefit.
The solid cross-section of local talent will include Whiskey Chimp,
Ill Repute, Franklin for Short and Heather Rae & Rumbleweed. Plus,
plenty of artists will show their work and plenty of guests will go home
with stuff from numerous prize drawings.
Advance tickets can be purchased at Salzer’s Records and Five Points
Skate Shop — both in Ventura — saving the buyer three George
Washingtons.
One of the many acts demanding a timely arrival is Heather Rae &
Rumbleweed, a country-rockband from Ventura. Rae was a former member of
Lilywater, a past-tense Ventura band that at one time had every female
musician in Ventura as a member.
For a while now Rae has been doing her own twang thang and hating
Robert Frost. Here’s her take on all that:
Photo courtesy Claudia Craig
Singer Heather Rae, a former Lilywater member,
will perform in tonight’s show at The Lodge in Ventura as part of Heather
Rae & Rumbleweed.
Heather McRae & Rumbleweed
The Ventura country-rock band is one of several acts performing
tonight at the Gavin Peters Rock ’n’ Art Benefit, a fundraising concert
and art show at The Lodge for Ventura skateboarder Gavin Peters, who has
Lyme disease. Also playing are Whiskey Chimp, Franklin for Short,
T.F.W., Charman, Ill Repute, Lovebird, Monster Hand, Forgotten Science,
Bad Trips, Running on Wires and others. The show is for all ages; doors
open at 6 p.m. The Lodge is at 11 S. Ash St., Ventura. Tickets cost $15
at the door or $12 in advance at Salzer’s Records or Five Points Skate
Shop. For more information about the benefit, call 320-0811 or visit http://www.myspace.com/helpgavin.
Heather McRae & Rumbleweed also will play with the Swing Cheese
Band at 3:30 p.m. Saturday at Caffrodite, 1876 E. Main St., Ventura; and
at 10 p.m. Mondays each week in May at Billy O’s, 2819 E. Main St.,
Ventura. The band’s Web site is http://www.myspace.com/letvinchick.
So how’s the music biz? Are you a rich rock star yet?
Not quite.
Darn, what with the economy and all, I was hoping you could
lend me a dollar.
Well, I am a waitress, so I have lots of singles.
Is being a waitress — in effect, an underpaid psychiatrist — a
good job to generate new songs?
Yeah, basically. Waitressing? I think it’s just inspiration for
college.
How long has there been musical you?
Well, I started playing music when I was about 19. I’m 24 now. I
started out with Lilywater.
Every musical girl in the 805 was in that band.
Yeah, I started out in Lilywater when Erika (Harding) invited me to
check it out, so that inspired me to start writing songs on my own and
pick up a guitar and learn a couple of chords.
Do you do any Lilywater songs?
I still so some Lilywater songs every now and then. It got me really
into bluegrass. I was raised on a lot of New Wave and Motown because my
dad was a musician. He was in an ’80s band called the Dots.
I wrote a story on the Dots a long time ago. I sort of
remember a band picture — they all have mullets and they’re all snapping
their fingers or something. Which one was your dad?
Tommy Letvinchuck. No way — what a trip.
Didn’t the Dots play a couple of years ago?
Yeah, they’ve had a couple of reunion shows.
Do you remember your first non-Lilywater gig?
My first non-Lilywater gig, I think, was at Zoey’s, opening up for a
friend. I had the stomach flu and couldn’t keep anything down, so I
would play a couple of songs, then go to the bathroom and vomit in
between. I didn’t want to cancel because it was a big deal to me.
That’s a little-known fact that probably no one wants to hear
about.
Probably not, but you know what? I’m dedicated.
Tell me about the band. Tumbleweed, is it?
Well, the boys decided to change themselves to Rumbleweed.
And you have the coolest drummer in the world.
Chuck Herrera? Basically, yeah. Who doesn’t love Chuck?
What does Heather Rae & Rumbleweed sound like?
We’re kind of a mix between I’d say Freakwater and the Old ’97s.
We’re very twangy. I have Tommy Connell playing lead guitar for me and
he’s just an outstanding guitar player, and his son, Johnny Marston,
playing stand-up bass.
Do you guys do any Old ’97s songs?
We haven’t done any covers yet.
How many Heather songs are there so far?
A lot — probably so many that I can’t even count them all. Our set
list is about 12 songs but over the years I’ve written probably over 40
songs.
Do you have a CD or are you going to build one?
It’s in the works and it’s a big surprise.
This year?
Yes — we’re hoping. It’s looking good.
How does an indie girl make it in an indie world?
Oh, God, well, you tell me. I don’t seem to really identify with one
scene — I’m not good with labeling myself. I appreciate all music and I
appreciate all scenes so I don’t know where I fit in. I don’t belong
anywhere. I don’t know what the hell I’m doing. I honestly started
writing country songs after never listening to country in my life. I
didn’t like country music — I hated country music and bluegrass until I
was in Lilywater. I was totally against it. I was a rock ’n’ roll girl.
So Erika’s contagious?
Erika’s contagious, man. Erika and Brent (Harding, Erika’s husband)
were both very influential. They turned me on to a lot of really good
music. I’d say they’re responsible for about 50 percent of my musical
taste.
So what’s your take on the Ventura scene?
I think we have a lot of amazing bands. A lot of bands that are
coming out of Ventura are going to make it everything from Rey Fresco
to Franklin for Short to Lovebird. I think Ventura is becoming a little
bit of a hub for good music. All these people are in different genres
and everyone just seems to come together and make it happen for each
other and I love that.
Does Robert Frost suck or is it just a song?
Yeah, Robert Frost sucks. I was never a Robert Frost fan. I love his
poem “The Outsiders,” but I never got behind Robert Frost in high
school.
This will be a preview for that big, giant gig at the Lodge
in Ventura where every band in Ventura is playing — it’s sort of like
Lilywater exploding.
Yeah, basically.
One more easy one: What’s next?
We have a Monday night residency at Billy O’s in Ventura in May.
That’s a tough gig — Monday nights.
It is, but you know what? Billy O’s is always packed on Monday
nights.
A lot of slackers don’t have jobs.
It appeals to slackers and alcoholics, so people are bound to have a
damn good time.
For CD reviews and more show previews, view Bill Locey’s “I Love
Locey” videos in the Media Player section of The Star’s Web site, http://www.vcstar.com.
Please join Marshall Direct Fund and The Woods Fine Jewelry 4-7pm
March 18th at Distractions 465 E. Hopkins Ave, Aspen CO.The
Woods Fine Jewelry consists of bold pieces juxtaposing natural elements
with exquisite diamonds. Their designs are worn by fashion trendsetters
accross the globe including celebrities such as Kate Hudson, Ashley
Olsen, Charlize Theron, and Paris Hilton. Artist, Evan Hecox has
designed a piece loosely inspired by the MDF logo which Sam and Shawn
have translated into a pendant and charm. The charm can be attached to
various necklaces and bracelets the sisters have within their jewelry
line. 100% of the profit of these pieces will benefit MDF. A portion of
the proceeds on all products at Distractions during the event will
also be donated.
MDF will use money raised to support vocational training for mothers
of children in the schools we operate. By providing mothers skills and
business training in embellished, fabrics, clothing, and accessories,
MDF helps women develop tools necessary to generate income, send their
children to school, and lift their families out of poverty.
Sam Hitchcock Terkun & Shawn Hecox of The Woods, along with Heidi
Semrau of Distractions are role models for female entrepreneurs across
the globe. This event is a fun way for fashionistas on this side of the
world to support our female counterparts in Pakistan who are working
hard to obtain better livelihoods for themselves and their families.
Women everywhere love to feel beautiful and strong. Distractions and
The Woods Fine Jewelry embody this mission. MDF is honored to have such
intelligent and talented women standing by our side!
Champagne, fruit, and cookies will be served. In the spirit of women
helping women, Jennifer Bush of Icebox Bakery in Boulder, is donating
her all natural delicious cookies to the event! We hope to see you
there! If you can’t attend the event or don’t live in the Aspen area MDF
would be happy to send information on how to get in on the action from
wherever you are. Photos of the product cannot be released until the
event launch. Contact
us
do a interview on CNN and imidasntgly I needed to watch the film and Know
as much as I could for Soraya M . A lot has changed in the middle east since
Soraya has passed away although I know throughout the world a lot more still needs to change
for the rights of all human beings throughout the world.This is a movie everyone should see. I assure you we will not forget how lucky we are to have the freedoms that we do have even though sometimes
we are creatures of wanting more of what we don't have. As as woman with
disabilities surrounded by things you cant always have, Soraya M and her Aunts story will remind me
to remember others that are less fortunate then I.Still, I am an activist for disabled/Woman's rights. I watched the film twice,Yes I did, 2x. Once alone and then with a friend of mine. Its depressing how far woman still need to go to be treated with equality and respect.
In the mid-1980s, an Iranian-born, France-based journalist named
Freidoune Sahebjam was traveling in his native land, assessing the
impact of the Iranian Revolution, when he came upon a rural mountain
village and learned of a ghastly crime. It had been committed by an
entire community against a local woman. It was a crime that indicted a
nation, a movement, and a religiously inspired ideology.
The victim was Soraya Manutchehri, a 35-year-old mother of seven
who, in her own prophetic words, had become "an inconvenient wife."
Bartered away in an arranged marriage at 13 to a petty criminal named
Ghorban-Ali, who was 20 years old at the time, Soraya bore nine children
over the next two decades, enduring two stillborn births and regular
beatings from her husband, along with his insults, his consorting with
prostitutes, and his campaign to turn her two oldest sons against her.
On August 15, 1986, with the complicity of a local mullah who
had been imprisoned for child molesting under the Shah, Ghorban-Ali
showed himself to be more than a garden variety sociopath and town
bully; he was a sadistic monster, and Islamic fundamentalism was his
enabler, his aider, his abettor.
In the anarchic days of the Iranian Revolution, Ghorban-Ali had
found work as a prison guard in a neighboring town. There, he met a
14-year-old girl whom he wanted to marry. Polygamy was encouraged in
Ayatollah Khomeini's Iran, but Ghorban-Ali didn't want to support two
families, and did not desire to return his wife's dowry. How to rid
himself of his "old" wife? That was the easy part. Accuse her of
infidelity. No matter that her husband had not actually seen anything
untoward, or that Soraya was completely innocent, or that her husband's
cynical accusations were only backed up by his cousin, who as it turned
out had been coerced into concurring with the vaguest of accusations: a
smile here, a brushed hand there.
What court of law would find someone guilty on such flimsy
evidence? A "sharia" court is the answer. And so Soraya was convicted.
The sentence was death-death by stoning.
That was the story relayed to Freidoune Sahebjam by Soraya's
brave aunt, Zahra Khanum. His riveting and spare account became an
international best-seller. Critics compared "The Stoning of Soraya M."
to Kafka, but actually nothing in the western canon of literature is
comparable to the inadvertent self-parody -- the simple lunacy -- of a
system of law that maintains that if a man is accused of infidelity by
his wife, she must prove his guilt, but if a woman is accused, she must
prove her innocence. Thus, in a single sentence, is a belief system
codified. It is a system that rejects modernity, justice, equality and
rationality -- and treats female sexuality as a vice. Apparently, you
can get away with this kind of madness in much of the world by simply
inciting crowds to chant, "God is Great," while you throw the stones.
It's a fitting image, rock-throwing...fitting for the Stone
Age, that is. Such show trials pay no heed to the natural rights we
presume to be universal in a 21st century society: The right to be
present at your own trial, to testify in your own defense, to
cross-examine the witnesses against you, to be represented by counsel,
to have an impartial arbiter of fact, to appeal the judgment to higher
courts. None of these were present in rural Iran in the drunken days of
"the Islamic Revolution." For women and girls in Iran and in many other
parts of the globe they are not present today.
The verdict against Soraya M., was carried out in a village
called Kupayeh, but it could have been almost anywhere in rural Iran. It
could happen, and does still, in Somalia, Afghanistan, Pakistan,
Nigeria, or anyplace where sharia is the law of the land. More
common, by far, in the Muslim world is the perverse practice of "honor
killings" -- the slaying of a woman or girl by male members of her own
family on the basis of some presumed sexual indiscretion. The barbarity
of this practice is mirrored by its Orwellian description, for it is one
of the most dishonorable practices in the world.
Soraya M's brutal execution occurred more than two decades ago,
but it was only last October that a girl barely into her teens was
stoned to death in a stadium in the Somalian port city of Kismayo.
Initially, her "crime" was said to be adultery, and her age given as 23.
Actually, according to Amnesty International, she was 13 years old, and
she came into the custody of an Islamic militia when she had the
temerity to report to authorities that she had been gang-raped. Her
three attackers were not charged. The girl was publicly murdered before
1,000 cheering spectators. Her name was Aisha Ibrahim Duhulow.
In the religious traditions of the West, free will is offered as an
explanation for such depredations, but that rationale seems grossly
insufficient. When packs of armed men shout "God is Great" while
disfiguring, abasing, or killing women, surely God is weeping.
Cyrus Nowrasteh, a Colorado-born film director of Persian
descent, said, "When I read the book, I thought, if this is really
happening all over the world, someone needs to shine a light on it. The
world has to become more aware of it."
Now he has done that. I watched the movie version of The
Stoning of Soraya M. at a private screening earlier this week, and
have been unable to concentrate on much else since. The film will make
its debut on June 26 in 10 American cities, including Washington, D.C.
I'm sure its backers would like reviews to run closer to the movie's
public premier; I hope they understand: I feel compelled to write about
it now.
The Stoning of Soraya M. opens with a dilapidated car
breaking down on mountainous road, as the radio announcer intones that
everything is so much better in the new Islamic Republic. Meanwhile, an
old woman chases away a dog that is picking at bones beside a stream.
The old woman carefully, lovingly, washes the bones. We, the viewers,
wonder in horror: Can those bones be... human? Who would discard a body
for wild dogs?
The sense of menace begins immediately, when our stranded
motorist -- Freidoune Sahebjam himself, played by James Caviezel --
bumps into Kupayeh's mayor and mullah. Sahebjam, who died last year at
the age of 75, didn't live to see the film, but I imagine would have
been honored by the subtle way he is portrayed by Caviezel, who played
Jesus Christ in Mel Gibson's The Passion of the Christ. This is
perhaps not a coincidence, as the screenplay written by Nowrasteh and
his wife Betsy wound up in the lap of John Shepherd, president of
Mpower Pictures, the outfit founded by Shepherd, Stephen McEveety, and
Todd Burns.
McEveety worked with Gibson on Braveheart and ThePassion of the Christ, both of which were "message" movies
that grossed hundreds of millions of dollars. It's doubtful that TheStoning of Soraya M. can duplicate that kind of box office
success. But I do agree with McEveety, whose reaction upon seeing the
Nowrastehs script was that this story "absolutely had to be told."
Sahebjam's book was banned in Iran, of course, and undoubtedly
this movie will be as well. Will it be vilified by various radical
mullahs around the world, or will it be ignored? That is an interesting
question, although probably not one that will keep these filmmakers up
at night. Nowrasteh was previously the victim of a kind of liberal fatwa,
apparently issued by William Jefferson Clinton, or his supporters:
Nowrasteh's two-part television miniseries ThePath to 9/11
was pointedly critical of the Clinton administration for its tepid
interest in capturing or killing Osama bin Laden. Some 25 million people
watched the mini-series, and although it cost ABC $40 million to make,
the Disney-owned network never released it on DVD. (The explanation
provided by company suits was that they said they didn't think it would
be profitable to re-release it; a more plausible explanation to some
company critics is Disney CEO Robert Iger's support of the Democratic
Party.)
Getting the rights to produce this film was not easy, either.
Freidoune Sahebjam had been approached previously, but the hurdles he
erected were not easily overcome -- until Nowrasteh came along. The
Iranian-American filmmaker never actually met the Iranian-French writer,
although the men did speak on the phone to hash out the details of the
project. Sahebjam wanted the movie to be made in Farsi, the language of
Iran, and with Persian actors. Nowrasteh agreed; that was how he wanted
to shoot the movie, too.
Mozhan Marno, the Iranian-American actress who plays Soraya,
said the subject matter became so real to her that she had nightmares
during the filming of the graphic final scenes; in her dreams, crowds of
angry people were surrounding her menacingly until she could no longer
breathe.
The dialogue in the movie is faithful to that in the book, although
those who have read The Stoning of Soraya M., will notice that
Soraya has four children in the film, instead of seven, for example. In
real life, her sullen oldest sons were 18 and 16, and well on their way
to repeating their father's thuggish ways. On film, they are
considerably younger -- and the younger of the two is deeply troubled by
what is happening, even as he follows his father's lead.
The expressions of hatred on the older son's face are deeply
disturbing; it's alien, this virulent brand of sexism, this genuine
loathing of women. I understand that it is fueled by religion and by
misplaced national pride and by feelings of impotence in a rapidly
changing world. But the sheer unnaturalness of it left me unsettled. We
certainly have remorseless and evil men in our society, who hurt, and
even murder, their wives. But the difference is that we hunt these men
down and imprison them, and we revile their names: Scott Peterson, and
now Drew Peterson. We don't help them kill their spouses.
I do not know, as I told one of this movie's financial backers,
whether Americans will sit through a film this sad and grisly. I only
know that they should. It has been said many times since 9/11 that we
are in a war of ideas -- and a shooting war as well -- with men who are
confident that one day all the world will be governed by this kind of
law. It would not be a world worth inhabiting. I am haunted by Soroya
and her sisters
Actor Sean Penn talks with CBS' Lara Logan about bringing his son and
daughter to Haiti and what valuable lessons they can learn as part of
the relief effort.
Actor Sean Penn tells CBS News' Lara Logan he doesn't spend a lot of
time thinking about his critics but does admit he wouldn't mind if they
"died screaming of rectal cancer."
My little input regarding this story.. When I started as a disabled rightsactivist I went to Michigan to attend a Not Dead Yet action that was in Arbor Michigan in "97" against Dr. Kevorkian. This was my only protest with the group as I didn't really want that to be part of my activism. I was very young as i have said before and I honestly didn't have the right or knowledge to be there. At the time my aunt Elizabeth was alive and we had our differences on the issue. She was pro and I the "rebel activist" was against. Later in life my views would change as I watched her battle the worst case of Rheumatoid Arthritis. If only we could really talk now! How many of my views upon life,death,care have changed to where I am still a strong activist for the disabled or any minority group, I just try and listen less to what i feel should be the outcome and now let the person, the subject help me understand their side of the matter.My father suffered a trumatic stroke a year after my aunt passed away,I struggled a lot what would and may be his out come and just didn't want him to have to live a life where he would be unhappy and unable to do anything. Six years later he is unable to work due to his outcome of his stroke but i am so happy i still have him around. Mind you this story is a bit different then my history regarding assisted suicide or the right to die, i just wanted to share a bit of what I have experienced.
COURTESY OF WENDY JOHN
Bill Morris, who had multiple myeloma, found a
path filled with obstacles as he tried to use thelaw.
Bill Morris wasn't counted.
His case is nowhere to be found in the numbers released Thursday,
tallying those who used Washington's year-old "Death with Dignity" law.
Morris, a 66-year-old remodeling designer and builder who was dying
of multiple myeloma, wanted to be among those 63 terminally ill patients
whose doctors helped them obtain lethal medication.
He was afraid. Not of death, but of ending up like he did: dying in
an emergency room, surrounded by fluorescent lights and strangers,
instead of at home in Wallingford, near the birdhouses he built and the
trees he loved.
"He didn't want to die in a hospital," said his wife, Wendy John. "He
was a free spirit. It made him feel like a cornered animal."
Morris had suffered for three years. "He didn't have a future, and he
knew it," she said. "He told me, 'I'm not afraid of it ... Just let me
go sooner than later.' "
But sooner was not to be. Like other terminally ill people wanting a
say in their own death, he found a path filled with obstacles — from
unrealistic estimates about how much time the patients have left to
vague answers from the doctors they turn to for help, as well as their
own unfamiliarity with the law's steps and conditions.
Compassion & Choices of Washington, which has provided assistance
to the majority of those who successfully obtained lethal medication
through the law, says as many as half of the qualified patients the
group tried to help came to the organization too late.
"They don't realize it's a process," said Gretchen DeRoche, the
group's volunteer coordinator. "The sad thing is, if people wait too
long, they don't have any options.
"HE ROADBLOCKS"
Interviews with advocates and survivors of patients who tried
unsuccessfully to use the law point to a number of common difficulties.
A straight-talk shortage
Under the law, a dying patient needs to find two doctors, one to
write the prescription and the other to consult.
For many doctors, any conversation about death is difficult — even
more so when it's "Death with Dignity."
So those who oppose the law may skirt the topic if a patient brings
it up. And patients may not be eager to put a fine point on it, either.
Conversations related by survivors and advocates often go like this:
Patient:Will you help me when the time comes? Or:
Will you help me if the pain gets too bad?
Doctor: I'll be there for you. Or: I'll make sure you're
not in pain.
Such words can be easily misunderstood — and often are.
Patrick Sullivan
of Sequim was diagnosed last Aug.
28 with a rare inoperable brainstem cancer.
His oncologist called his condition "potentially terminal," and said
he had "a chance." But radiation and chemotherapy didn't help, and by
November, Patrick began talking bluntly about using the law.
Liz and Patrick had moved from Florida to Washington in 2005. They
considered Oregon instead because of its Death with Dignity law, but
chose Sequim to be closer to relatives. In 2008, both voted for
Washington's law even though neither was ill. "This is something we both
felt very strongly about — that people should have the right to die
with dignity," Liz said.
But after Patrick's diagnosis, when he asked his oncologist to help
him use the law, "I don't believe she really gave him an answer," Liz
said. "He thought she would; it was not a flat-out no."
It apparently wasn't a yes, either, so they enlisted their family
doctor in Port Angeles, who agreed, then changed his mind. The search
for another doctor burned up more time. On Dec. 9, Liz found one, and
made an appointment for Dec. 15. By then, Patrick was suffering what Liz
called "indignities."
"He was a very proud person, a very intelligent man. I think it was
just devastating to him that he didn't have control over his body."
On his last day, he was rushed from nursing home to emergency room
and back. Patrick Sullivan, 72, died Dec. 11.
Dr. Tom Preston, a retired cardiologist and volunteer medical
director for Compassion & Choices, says patients should skip the
euphemisms, and — in private — ask their doctor a yes-or-no question
now: "If I become terminally ill, will you prescribe life-ending
medication for me under the Death with Dignity Act?"
Any answer other than "yes" means "no," says Robb Miller, the group's
executive director. "You must know, so you don't waste time. I'm not
saying change physicians; I'm just saying: Know where your physician
stands."
The treat-until-death bias
When surveyed, most cancer doctors admit they don't talk to patients
facing death within four to six months about the most standard
end-of-life issues, such as hospice care, said Dr. Nancy Keating, a
Harvard Medical School researcher. "To me, this suggests that they think
they don't need to."
When doctors do discuss a patient's prognosis, it's to talk about
treatments, not death, she said. "Doctors are typically trained to cure
people, to make people better. I don't think most doctors think helping
people with death falls under that."
Leslie Creed, of Vashon Island, was a free spirit
who seemed to be in good health.
Persistent leg pain sent her to a doctor, who diagnosed lymphoma, a
cancer. Despite aggressive treatment, it advanced quickly.
"Very early on, she'd said she didn't want to be hooked up to a 'drug
machine' — she wanted to gather people together and say goodbye and
take what she called the 'croak cocktail,' " said her son, Daniel Tobin.
But once in the care of specialists in Seattle, it seemed that every
time she brought up using the law, she got stalled. It was always: Let's
wait until after we see your next scan, her son related. "Nobody
wanted to take any steps in that direction until it was known she was
terminal."
Meanwhile, "We're waiting on a CT scan," he said, "and she's getting
really worse" — so quickly that it was too late for her to get help
under the law.
Many surviving families said their own unrealistic hopes and denial
played a part in delays, too.
For one thing, it's often unclear how fast a disease will progress.
Even doctors routinely misjudge that, typically erring on the optimistic
side; many don't refer patients to hospice until very late.
"I was thinking that the (cancer) drugs would work," said Wendy John,
whose husband, Bill Morris, died Aug. 11. "I wasn't thinking he would
be terminal so quickly."
Policies and politics
Many doctors in Eastern Washington refuse to use the law, and in some
communities, no pharmacies stock the drugs. Hospital policies against
participation may extend to their clinics and doctors.
Some hospice organizations, particularly those with Catholic ties,
won't let care providers work with patients in any way to use the law.
Some leave it up to individual hospice workers.
Roberta Turcott of Yakima had long ago selected a
doctor in Yakima with ties to hospice, believing he would help her die
peacefully when the time came.
Turcott, a regular churchgoer, voted for the law. After she was
diagnosed with ovarian cancer last May, she told her doctor she wanted
the drugs in her "toolbox." But his hospice program was through a
hospital that didn't support the law.
"I think hospice is a wonderful program — I could not have survived
without them," said Rhoda Benson, her daughter. But for her mother, the
hospice tie became a barrier. "It didn't help her," she said. "It hurt
her."
Unable to find a local doctor, her family began making plans to fly
one in from Seattle. Finally, they found one in Yakima, but Turcott was
too sick to make her appointment on June 30. Roberta Jean Turcott, 80,
who attended four world's fairs, died later that day, her Bible by her
side.
Unfamiliarity with the law
Many patients and doctors aren't well-versed in the new law's
requirements.
Patients can underestimate the time it will take, including waiting
periods such as the 15-day period between patient requests.
Compassion & Choices' advocates say the process typically takes
four to six weeks, even when a patient has willing doctors, no
mental-health issues, a pharmacy to dispense and means to pay for the
expensive drugs.
There can be hitches at any point, particularly if a patient gets
misleading information.
Leslie Creed, on Vashon, with no local pharmacy that
stocked the medication, had been told — mistakenly — that she had to
personally pick up the drugs. By that time, she was too ill.
Many patients and families don't realize that disease can render a
patient unable to comply with the law, which requires a patient to be
mentally competent and at key times able to speak or write and swallow.
Creed had a doctor who was willing, but when time came for the second
request, she was taking medications for "excruciating pain," her son
said. "The doctor had to go away because she wasn't lucid." Leslie
Creed, sans "croak cocktail," died at home on Dec. 13 at age 68.
Running out of time
Survivors of patients who tried to use the law and
failed are left with mixed emotions, including guilt. "If anything, I
blame myself for not knowing the law," says Wendy John.
She's also angry at her husband's doctors, saying both refused to
help and wouldn't even talk about it.
"It makes me feel very disappointed in them," she said. "I feel
abandoned and sort of betrayed. Like, 'My God, don't you know what's
going on here?' They knew Bill ... Everybody liked Bill. Why would they
not do this for him? It's what he wanted."
Although she gave her permission, the doctors declined to comment.
These and other survivors spoke out because they want to help others
avoid pitfalls. Several said their loved one likely wouldn't have — or
couldn't have — taken a lethal dose, but would have found comfort in
having it — just in case.
"If you've got a diagnosis like this, you don't have the luxury of
waiting," said Liz Sullivan, Patrick Sullivan's widow. "It's not an easy
process, and you've just got to sit down and do it, fill out the
paperwork, get ahold of Compassion & Choices. They'll help you every
step of the way ... "
Rhoda Benson recalls the painful scramble to find participating
doctors for her mother in Yakima. "The message is: People need to start
sooner if they want this as an option," she said. "The reality is,
you've got to get off your behind, make some contacts," and maybe even
change doctors.
"In hindsight, I do get that the law is new," and doctors have fears
about it, she said. "I don't think it's where we'll be in 10 years. But
it's the reality of where we are now."
'Death with Dignity' Act: the first year's
report
63 patients received lethal
medications in 2009.
47 of the patients who got medications later died.
36 patients took the lethal dose.
7 patients died without taking the medication.
* Four others also died, but it is unclear whether they had taken
the medication.
Source: Washington state Department of Health
Requirements of state's 'Death with Dignity'
law
A patient must be at least 18, competent, living
in Washington and able to administer the drug.
Have six months or less to live, as determined by
two doctors.
Make an oral and written request, signed and dated
by the patient and witnessed by two people who are not relatives,
heirs, the attending physician or tied to the patient's health facility.
Make a second oral request to the attending
physician at least 15 days after the first one.
Wait two days after signing the written request
before the prescription is written.
KUNMING, China — Chen Mingjing’s entrepreneurial instincts vaulted him
from a peasant upbringing to undreamed-of wealth, acquired in ventures
ranging from making electric meters to investing in real estate. But
when he was 44, the allure of making money for money’s sake began to
wane. He wanted to run a business that accomplished some goodAnd so last September, Mr. Chen did what any socially aware
entrepreneur might do: He opened a theme park of dwarfs, charging tourists about $9 a
head to watch dozens of dwarfs in pink tutus perform a slapstick
version of “Swan Lake” along with other skits.
Mr. Chen has big plans for his Kingdom of the Little People. Imagine a
$115 million universe in miniature, set amid 13,000 acres of rolling
hills and peaceful lakes in southern China’s Yunnan
Province, with tiny dogs, tiny fruit trees, a 230-foot-high performance
hall that looks like the stump of a prehistoric tree and standard-size
guest cabins.
Also, a black BMW modified to resemble a flying
saucer, from which dwarfs will spill forth to begin their performances.
“It will be like a fairy tale,” Mr. Chen said. “Everything here I have
designed myself.”
The site is far from complete. So far, it mainly consists of the tree,
33 Dr. Seuss-style
cottages with crooked chimneys where kingdom residents pretend to live
and specially equipped dormitories where they actually reside. But it is
already drawing its share of detractors.
Critics say displaying dwarfs is at best misguided and at worst
immoral, a throwback to times when freak shows pandered to people’s
morbid curiosity.
“Are they just going there to look at curious objects?” asked Yu Haibo,
who leads a volunteer organization for the disabled in Jilin Province
in the northeast.
“I think it is horrible,” said Gary Arnold, the spokesman for Little People of America Inc., a dwarfism support group
based in California. “What is the difference between it and a zoo?”
Even the term “dwarf” is offensive to some; his organization prefers
“person of short stature.”
Jean Van Wetter, the China director for Handicap
International, a London-based nonprofit organization that helps the
disabled, argues that integration diminishes prejudice; isolation
reinforces it. “This is the kind of thing you see in China,” he said.
But there is another view, and Mr. Chen and some of his short-statured
workers present it forcefully. One hundred permanently employed dwarfs,
they contend, is better than 100 dwarfs scrounging for odd jobs. They
insist that the audiences who see the dwarfs sing, dance and perform
comic routines leave impressed by their skills and courage.
Many performers said they enjoyed being part of a community where
everyone shares the same challenges, like the height of a sink. “Before,
when we were at home, we didn’t know anyone our size. When we hang out
together with normal-size people, we can not really do the same things,”
said Wu Zhihong, 20. “So I really felt lonely sometimes.”
Mr. Chen asserts he has won support from no less than the United Nations
World Peace Foundation. He displays a certificate designating his
company, Yunnan Jiucai Yundie Biotech Ltd., as the “Charity Base Camp”
for Kunming, the nearest city.
Supporters and critics agree on one point: the fact that the park is
awash in job applications shows the disturbing dearth of opportunities
for the disabled in China. Cao Yu, Mr. Chen’s assistant, says she
receives three or four job inquiries a week.
“Under the current social situation in China, they really will not be
able to find a better employment situation,” she said.
The notion that people with disabilities should be mainstreamed into
education and ordinary jobs is still new in China, which is home to an
estimated 83 million people with disabilities. The disabled seem
strangely absent from the streets of Beijing or Shanghai.
Better than two in five disabled adults in China are illiterate,
according to a 2006 survey by the China Disabled Persons’ Federation, a government
agency. The average salary of a disabled worker is less than half that
of a non-disabled worker. Only one-third of disabled people who need
rehabilitation services have access to them, the survey found.
Professionals trained to aid the disabled are desperately scarce: Europe
has 185 times as many physiotherapists per person as China, according
to a 2008 study by Renmin University in Beijing.
Still, some indicators are improving. The number of disabled people
receiving low-income benefits jumped to more than seven million in 2008
from fewer than four million in 2005.
Nearly three in four children with disabilities attended school in 2008,
compared with about three in five just two years earlier. The number of
disabled students in universities and technical colleges in 2008
increased by 50 percent over 2006. Still, they amounted to a mere
handful, just one out of every 5,000 students.
“There is a clear instruction from the government to do more,” said Mr.
Van Wetter of Handicap International. “The problem is implementation.”
Mr. Chen said his employees had gained self-respect and
self-sufficiency. “It doesn’t really matter to me what other people
say,” he said. “The question is whether meeting me has changed their
lives.”
Ms. Wu said it had. Nicknamed Itty Bitty, she is just 3 feet, 9 inches
tall. Before Mr. Chen hired her, she developed photos and worked as a
telephone operator, jobs she said deliberately kept her out of public
view.
Now, she said, she sometimes see spectators tear up during the
performances. If they laugh, she said, it is because the routine is
funny, not out of ridicule.
One theme of the show is the need to overcome hardships — a lesson Mr.
Chen says he believes is too often forgotten as Chinese families grow
richer. And there is the Swan Lake parody, a crowd pleaser in which male
dwarfs dress up in pink tights and tutus and wiggle their derrières.
“The first time I wore that, I felt really awkward,” said Chen Ruan, 20,
who used to collect refuse with his parents. “But then I got up on
stage and people liked it. People were applauding and I felt proud.”
The park, 40 minutes by car from Kunming, is not yet profitable. One
recent chilly afternoon, only a few dozen spectators showed up.
Performers hope for bigger crowds.
“At first I thought it was surreal,” Zhang Furong, 38, a lead actor.
“But the strongest emotion I felt was here, we are among equals.”
Have you seen the movie Murderball? The Internet
Movie Database calls it, "a film about paraplegics who play
full-contact rugby in Mad Max-style wheelchairs."
While
rugby and extreme sports have little to do with Haiti at the moment,
wheelchairs sure do, especially "Mad Max-style" ones. In a
situation where towns are covered in rubble and many people have severe
injuries from the recent earthquakes, there's a desperate need for
low-cost, durable wheelchairs.
A perfectly-targeted national
government organization is stepping up to fill that need. Whirlwind Wheelchair
International designs and builds heavy-duty wheelchairs for use in
developing countries around the world, and under the present
circumstances, is turning its attention to Haiti, reports PBS
Newshour.
"We're having, so far, 350 chairs made in
Vietnam and Mexico, and all sent to Haiti to be distributed to people
both with spinal cord injuries and with amputations, usually dual
amputations, who absolutely have to get mobility soon, before it's too
late," co-founder Ralf Hotchkiss told Newshour.
Hotchkiss,
who is in a wheelchair himself, started the organization after learning
the hard way that wheelchairs are rarely tough enough to withstand any
kind of adventurous riding.
"My first wheelchair lasted me
half-a-block, and the front wheel was then ripped off by hitting a crack
in the sidewalk," he said. "It was beyond repair."
The chairs he
will provide to disabled people, called the RoughRider, will be head and
shoulders above that unfortunate chair of long ago. He was awarded a MacArthur
Genius grant for innovating this equipment in ways that can help so
many people so fundamentally and for raising awareness about the needs
of disabled people in developing countries.
On January 23, 2010,
15 year-old Matt Brown #3 sustained a spinal cord injury at the C4-C5
vertebra during the Norwood vs. Weymouth High hockey game. Matt was
immediately brought to South Shore Hospital and transferred to the ICU
at Children's Hospital in Boston.
Matt underwent surgery on
January 27th to stabilize his spine. This allows Matt to be in a more
upright position, without the fear of further damaging his neck and to
begin the rehabilitation process.
Matt remains paralyzed from the
chest down, with no movement in his arms, hands, legs or feet. He has,
however, started to experience sensation to touch on both his biceps and
on his left arm. These are small victories but victories his family
welcome...
His breathing has proved to be more of a challenge and
he recently suffered a partially collapsed left lung. They managed to
re-inflate the lung adn while he can breathe on his own for a short
while, he cannot sustain it especially when he dozes off to sleep. As a
result, Matt underwent surgery on February 5th fora tracheotomy.
Matt
moved to Atlanta last Wednesday (2/17/10) to the Shepherd
Rehabilitation Center. The Shepherd Center is regarded as one of the
finest rehabilitation centers in the country and have a tremendous
recovery history for spinal cord patients. In addition they focus on
adolescents and there will be other teenagers who have suffered spinal
cord injuries there, so he will be working along side other kids his
age. They specialize in full rehabilitation, so will work on both his
physical and mental recovery. They also work with the parents to help
them prepare for caring for Matt when he comes home. He was originally
in the ICU at the Shepherd Center, but has since been moved to a
"regular" rehab floor. They have had Matt out of bed for extended
periods of time and he has also spent increasing periods of time off the
respirator.
The
event, An Evening of Faith, Hope, and Inspiration to benefit the Matt Brown Rehab and Recovery Fund, is
scheduled for Friday, April 30, 2010 at the Fidelity East Suites, Gillette Stadium in
Foxboro. We expect this to be a fantastic event in a gorgeous venue, and
it will include food, entertainment, live and silent auctions, raffles,
as well as appearances by some sports celebrities. Tickets are now
available with a suggested donation price of $50. For ticket
information, please contact Laura at, 781-762-2557. We are seeking event sponsors as well as donated items
to be used for auction and raffle purposes.All donations of auction/raffle merchandise will be
credited in the event program. If you would like to be an event sponsor or make a
donation for the auction or raffle or if you have any questions please
contact us as one of the following email addresses:
Since Haiti's earthquake I have been searching for information on the disabled population in Haiti. A friend
of mine told me of a 22 yr old girl named Molly Hightower who was started volenteering in June 2009. She assisted in the
phytsical therapy program, working with the children of Kay St. Germaine
in Tabarre. She had also started treating children at the St. Damien
Pediatric Hospital who were never included in the program before. Molly
had already made drastic headway with little Jolene (pictured on the right), who due to meningitis and tuberculosis infections, is finally
learning to walk at three years of age.
This blog enetery is to raise awareness of the NPH Saint Damien Hospital in haiti.About . NPH is not only for neglected disabled babies and children but other health issues.I found an article The Miami Harold did last August as I was searching for any information regarding the disabled population in Haiti.
PORT-AU-PRINCE, Haiti --
Her frail body lies almost motionless inside a rusted metal crib.
Her diaper is soiled, but she doesn't cry. At 9 months old, she weighs
just five pounds.
The staff inside the Abandoned Baby Unit at
the government-run Hospital of the State University of Haiti call her
Sarafina. She was dumped on the hospital's front steps: No name, no
note.
But doctors know her story all too well -- like the
dozens of other special needs babies crammed inside the unit, she was
tossed out by parents who could not deal with her mental retardation.
``We find them on the streets, in the hospitals, in sewers,''
Dr. Questly Bonne-Anne said amid the wails of bedridden, diaper-clad
children confined two and three to small cribs. ``We guess their age, we
give them their names.''
Sarafina, named after a musical where
students struggle against apartheid, is among the lucky ones.
In this grindingly poor country, disabled children seem to disappear,
hidden away as burdens in a culture where parents count on their
children to someday provide for them. Even the healthiest of kids here
face starvation, violence and child trafficking, but getting anyone to
pay attention to the plight of those who are disabled has been
difficult, say child advocates.
No one knows for certain how
many disabled children are abandoned each year in Haiti, but child
abandonment is a growing problem, says Mariavittoria Ballotta, child
protection officer with UNICEF-Haiti.
With an estimated 50,000
children living in orphanages throughout Haiti, those with disabilities
get lost in the shuffle.
The government's Institute of Social
Welfare and Research (IBESR) -- tasked with ensuring their well-being --
is ill-equipped and under-funded.
And so, many end up at the
public hospital, according to child care advocates.
The
hospital has been plagued by corruption scandals, striking workers and
high turnover of administrators.
``Most of the children in the
Abandoned Baby Unit are handicapped, mentally challenged, past the
legal age of adoption or have terminal illnesses. This makes it nearly
impossible for IBESR to find homes in orphanages for these children,''
said Susie Scott Krabacher, the American philanthropist whose nonprofit
Mercy and Sharing Foundation finances the unit.
Tucked away in
the pediatric ward behind a frosted glass door, the unit is a cramped 30
feet by 15 feet box. Amid a faint ``mama, mama'' and the screams of
malnourished babies with matchstick legs and oversized heads, older
children sit and stare in an almost catatonic state.
Geraldine, 13, dressed in a light pink dress, rocks in her crib.
Suffering from epileptic seizures, she arrived at the unit eight years
ago. Her mother left her at the hospital during a doctor's visit.
Then there is Nena, the oldest. She's either 14 or 16; no one knows
for sure. Unable to walk, she's confined to the crib. She eats her own
feces and bites the nurses who try to clean her. Once a vibrant child,
she's slowly losing her mind.
Frustrated by a decade-and-a-half
long struggle to bring attention to the plight of the children,
Krabacher has started a letter-writing campaign. Among those she's
reached out to: Bill Clinton, former U.S. president and now UN special
envoy to Haiti. She's not seeking money, she says, just for him to push
the Haitian government to make disabled children a priority.
``We are not asking for anything unreasonable, just for us to be able to
use the resources we already have to do something, to make it as normal
as possible for these kids,'' she said. ``I want the government to take
responsibility.''
Jeanne Bernard Pierre, the director of the
IBESR, did not return calls from The Miami Herald seeking comment.
Two years ago, Haitian President René Préval sought to give the
plight of Haiti's disabled greater visibility by creating an office for
the integration of persons with disabilities. He named a longtime
disabilities advocate and university professor to head it.
Michel Péan, who is blind, recently drafted 85 new proposals for
parliament to adopt. All are aimed at social acceptance, and in the
particular case of children, ensuring they have a right to an education
despite their limitations. Parliament is expected to receive the
proposals soon.
In the past few years, an effort also has been
under way to get parents to understand that children with disabilities
can succeed.
Recently, Haitian newspapers heralded the story
of 23 disabled high school students who sat for national exams,
including one girl without arms who uses her toes to write.
``Progress is being made,'' said Péan, who credits nongovernmental
groups and disabilities groups like his Haitian Society for the Blind
with leading the effort through advocacy, protests and participation in
radio programs. ``During the past 10 years we have been able to fight
for the rights of the handicapped. We've done a lot of work. There is
still a long way to go.''
Krabacher first learned that unwanted
children were being left at the public hospital during a visit 16 years
ago. Back then, the unit was a dark, secluded hallway where 17
children, covered in bed sores, slept in cribs with no mattresses.
Eventually, Mercy and Sharing took control of the unit. It expects to
spend $55,000 this year buying diapers, medicine and food. It also pays
the salaries of the nurses and two doctors.
The problem with
unwanted disabled children in Haiti stems from a society that
stigmatizes parents who give birth to imperfectly formed children, in a
place where few women get prenatal care amid an exploding birth rate.
``We have a society that doesn't accept handicapped children,'' said
the Rev. Sadoni Leon, the director of St. Vincent Center for Handicapped
Children, Haiti's best-known school for disabled children.
Leon said while it's hard to understand how a parent can discard their
baby, ``many parents see the children as a burden they cannot bear, and
the only solution is to find a place to abandon them.'' Even at the
school, which has produced some of Haiti's most talented artists, there
are disabled students whose parents disappeared after dropping them off.
``For a child that is 10 years old, it's traumatic to know that their
parents left him here because the parent doesn't want him, can't take
care of him,'' Leon said. ``He feels humiliated because when the others
go home on vacation he has to stay.''
One of the few centers
that cares for and educates handicapped children, St. Vincent was
founded in 1945 by the Boston-based Episcopal Order of the Sisters of
St. Margaret. Today, its health clinic and school are supported mainly
through donations. Parents are asked to pay about $6.25 a month, a fee
that is still out of reach for many of the parents of the 350 students
from throughout Haiti.
Leon, who is struggling to keep St.
Vincent open amid a downturn in donations, says government must step in
financially to support special education ``so that families of
handicapped children can feel at ease, can feel they have some
assistance.''
``As a society,'' he said, ```we need to do our
part to ensure that these children don't feel like outcasts.''
Music for Relief has brought together an incredible album of artists
who have all generously donated original songs to support the Haiti
relief effort. Artists include: ALANIS
MORISSETTE, THE ALL-AMERICAN REJECTS, DAVE MATTHEWS BAND, ENRIQUE
IGLESIAS, HOOBASTANK, KENNA, LINKIN PARK, LUPE FIASCO, PETER GABRIEL
AND SLASH.
Now, we need your help: you can join in support of the immediate relief
and long-term recovery process in Haiti by downloading songs at MUSICFORRELIEF.ORG
and making a donation in any amount. Then, EMBED THE WIDGET on your
Facebook or MySpace page, your blog, or your website…wherever you can
spread the word. Every little bit helps.
100% of funds received will go directly to the Haiti efforts. In
partnership with the UN Foundation’s Central Emergency Response Fund,
Habitat for Humanity, and Dave Matthews BAMA Works Haitian relief
efforts, Music for Relief is working to support immediate relief with
food, water and emergency medical supplies as well as long-term
sustainable housing solutions for the people affected by this
catastrophic natural disaster.
Martin Luther King, Jr., said, "Life's most persistent and urgent
question is: What are you doing for others?" On Monday, in his honor,
we're asked to lift our sights beyond our immediate circle of family
and friends, and help contribute to something larger than our own lives.
Huffington Post Impact has put together a comprehensive list of
links to donate and get involved in relief efforts for victims of
Tuesday's devastating earthquake. You can also go to The Goods: Help Send Relief To Haiti,
an online store by Causecast and HuffPost Impact, where you can
purchase products for organizations that will be directly used on the
ground in Haiti.
The U.S. State Department Operations Center has set up the following
number for Americans seeking information about family members in Haiti:
1-888-407-4747
NOTE: We will continually be updating this page. The best
way for you to help right now is to give through one of the
organizations below.
�The American Red Cross
is pledging an initial $200,000 to assist communities impacted by this
earthquake. They expect to provide immediate needs for food, water,
temporary shelter, medical services and emotional support. They are
accepting donations through their International Response Fund.
�Clinton Bush Haiti Fund
is being run by former Presidents George W. Bush and Bill Clinton and
was created at the behest of President Obama. They oversee the CBHF
through their respective nonprofit organizations, the William J.
Clinton Foundation and Communities Foundation of Texas. One hundred
percent of the donations made to the Clinton Foundation go directly to
relief efforts. Ninety-nine percent of the donations made to the
Communities Foundation of Texas go directly to relief efforts.
�Haitian-born musician Wyclef Jean is raising funds for emergency earthquake relief through his nonprofit organization Yele Haiti. Text YELE to 501501 to give $5 to the fund. Yele Haiti came under scrutiny this week for potential improper allocation of funds. Wyclef Jean responded to these accusations on Saturday.
�UNICEF has
issued a statement that "Children are always the most vulnerable
population in any natural disaster, and UNICEF is there for them."
UNICEF requests donations for relief for children in Haiti via their Haiti Earthquake Fund. You can also call 1-800-4UNICEF.
�Operation USA
is appealing for donations of funds from the public and corporate
donations in bulk of health care materials, water purification supplies
and food supplements which it will ship to the region from its base in
the Port of Los Angeles. Donate online at www.opusa.org, by phone at 1-800-678-7255 or, by check made out to Operation USA, 3617 Hayden Ave, Suite A, Culver City, CA 90232.
�International Medical Corps
is assembling a team of first responders and resources to provide
lifesaving medical care and other emergency services to survivors of
the earthquake. The IMC previously helped recovery efforts after
September 2009's earthquake in Sumatra, Indonesia, and the massive 2005
earthquake in Pakistan. Donate to the International Medical Corps through their 24-hour hotline at 800-481-4462
�Ben Stiller's Stillerstrong campaign will be temporarily diverting all donations to support the Haiti relief effort.
�Partners In Health
reports its Port-au-Prince clinical director , Louise Ivers, has
appealed for assistance: "Port-au-Prince is devastated, lot of deaths.
SOS. SOS... Temporary field hospital by us at UNDP needs supplies, pain
meds, bandages. Please help us." Donate to their Haiti earthquake fund.
�As a UN Special Envoy to Haiti, Bill Clinton appeared on CNN on
Wednesday to ask for further assistance in bringing relief to
populations on the ground. You can donate through the Clinton Foundation or text HAITI to 20222 to donate $10.
�Mercy Corps
is sending a team of emergency responders to assess damage, and seek to
fulfill immediate needs of quake survivors. The agency aided families
after earthquakes in Peru in 2007, China and Pakistan in 2008, and
Indonesia last year. Donate online, call 1-888-256-1900 or send checks to Mercy Corps Haiti Earthquake Fund; Dept NR; PO Box 2669; Portland, OR 97208.
�Doctors Without Borders/Medecins Sans Frontieres is now asking donors to give to their general unrestricted fund,
to ensure that any surplus donations they receive can be put to good
use anywhere in the world. Below is a statement from the organization:
We are incredibly grateful for the generous support from our donors for the emergency in Haiti.
MSF has been working in Haiti for 19 years, most recently operating
three emergency hospitals in Port-au-Prince, and is mobilizing a large
emergency response to this disaster. Our immediate response in the
first hours following the disaster in Haiti was only possible because
of private unrestricted donations from around the world received before
the earthquake struck. We are currently reinforcing our teams on the
ground in order to respond to the immediate medical needs and to assess
the humanitarian needs that MSF will be addressing in the months ahead.
We are now asking our donors to give to our Emergency Relief Fund.
These types of funds ensure that our medical teams can react to the
Haiti emergency and humanitarian crises all over the world,
particularly neglected crises that remain outside the media spotlight.
Your gift via this website will be earmarked for our Emergency Relief
Fund.
�Direct Relief
is committing up to $1 million in aid for the response and is
coordinating with its other in-country partners and colleague
organizations. Their partners in Haiti include Partners in Health, St.
Damien Children's Hospital, and the Visitation Hospital, which are
particularly active in emergency response. Donate to Direct Relief online.
�Oxfam
is rushing in teams from around the region to respond to the situation
to provide clean water, shelter, sanitation and help people recover. Donate to Oxfam America online.
�The UN World Food Programme is gathering all available resources to deliver food to the recently homeless and impoverished in Haiti. Donate now to help bring food to those affected as quickly and efficiently as possible.
�The Baptist Haiti Mission is operating an 82-bed hospital that is "overflowing with injured." Donate online to BHM and 100% of your donation will go to the relief effort.
�International Medical Corps
is assembling a team of first responders and resources to provide
lifesaving medical care and other emergency services to survivors of
the earthquake. Donate online.
�Following the earthquake, Catholic Relief Services
made an immediate commitment of $5 million for emergency supplies. They
are distributing food and relief supplies, and importing plastic
sheeting, mosquito nets and water purification tablets from the
Domincan Republic. Donate to Catholic Relief Services to assist in these efforts.
�CARE is deploying emergency team members to Port-au-Prince to
assist in recovery efforts. They're focusing their efforts on the
health of children, distributing water sanitation tablets, food,
hygiene kits and emergency healthcare. Donate to CARE.
�Make your donation count double through Razoo.com. The online fundraising site has offered to match all donations made to organizations, up to a pre-set, un-posted amount.
�Orphans International America
reports that they have been able to make contact with their program
director in the town of Jacmel, a city about 20 miles southwest of
Port-au-Prince that houses OI's hospitals and schools. Orphans
International America is attempting to gather food, clean water and
emergency medical supplies to Jacmel. You can contribute to them
through PayPal.
�The International Rescue Committee
is deploying an emergency response team to Haiti to deliver urgent
assistance to earthquake survivors and to help overwhelmed local aid
groups struggling to meet the immense emergency needs. They will focus
on critical medical, water and sanitation assistance. Donate to the IRC Haiti Crisis Fund.
�NetHope is
coordinating its response with its NGO member agencies and with the
UN's Emergency Telecom Cluster to establish connectivity in Haiti.
Seventeen of NetHope's members are already providing aid and deploying
resources on the ground. Donate online.
�World Vision has more 370 staff in the country. Staff members from
less-affected regions of Haiti are mobilizing, and World Vision's
global experts are expected to arrive in the disaster zone as soon as
possible. Donate to World Vision.
�Friends of the Orphans
will use donations to meet the needs of first responders such as first
aid supplies, shipping of necessary materials to assist in efforts, and
treating the injured. Those interested in helping the relief effort can
visit www.friendsoftheorphans.org, or call 888-201-8880 to make a donation.
�World Concern's
staff is almost entirely composed of Haitian nationals and will be
tapping into private as well as U.S. government supplies to help in the
relief effort it hopes will soon be supplemented by cargo ships. Donate
to World Concern.
�Merlin USA
is sending an emergency response team out to the region and have
subsequently launched an emergency appeal to bring urgent medical aid
and assistance to those affected. Donate to Merlin USA.
�The Salvation Army
has staff on the ground and already the organization has set aside
$50,000 in direct aid to the country but the organization is in need of
additional donations. Donations can be made online or by calling 1-800-SAL-ARMY.
�AmeriCares
has pledged $5 million in aid in the wake of the catastrophe and is
sending an emergency shipment with $3 million worth of medicines and
supplies for earthquake survivors. Donate online or call 1-800-486-HELP.
�Handicap International
will provide care to those injured by the earthquake and its
aftershocks, including support to hospitals for essential post-surgery
and rehabilitation care, as well as emergency shelter, emergency basic
needs and food distribution for at least 5,000 people initially. Donate online.
�Episcopal Relief & Development has committed to providing Haiti both long and short-term support in the wake of the disaster. Donate to the Haiti Fund or call 1-800-334-7626, ext. 5129. Gifts can be mailed to Episcopal Relief & Development, PO Box 7058, Merrifield, VA 22116-7058.
HuffPost Impact is following relief organizations in Haiti and will be updating with their latest messages from the ground.
A look at what's new in movies, books, music, television, video games and DVDs for the weekend.
MOVIES:
"GRACIE" When her older brother is killed in an accident, a teenager
named Gracie (Carly Schroeder) petitions the school board to allow her
to take his place on the soccer team. Discouraged by her family, Gracie
decides to prove to everyone that she deserves to be on the soccer
field. With Elisabeth Shue, Dermit Mulroney, Andrew Shue and Emma Bell.
Directed by Davis Guggenheim. Released by Picturehouse. Rated PG-13.
Official movie site What the critics say: "just another formulaic, if
well-intentioned, sports movie." -Christy Lemire, The Associated Press
"Gracie strives to be 'G.I. Jane' in shin guards, but it ends up as
'She's the Man' without the comedy." -Phil Villarreal, Arizona Daily
Star
The Associated Press
LOS ANGELES -- MTV Networks is working with George Clooney to stage a telethon for Haitian earthquake relief.
MTV spokesman Mark Jafar said Thursday that details are still being worked out.
There's
no word yet about other stars getting involved. But Clooney
representative Stan Rosenfield said the actor is in the process of
helping organize the telethon, which likely would air Jan. 22 on all
MTV Networks - which include VH1, Comedy Central and CMT - as well as
on ABC, NBC, HBO and CNN.
Thousands are feared dead after the massive earthquake, and the Caribbean island nation desperately needs aid.
"They came in wheelchairs, carried signs and pleaded with state
legislators not to cut the funding that pays for the services they need."
Four-year-old Karson Brewster of Thurmont Maryland suffers from a rare
chromosomal disorder that prevents her from talking, walking or
crawling.
As a result of her condition, life for the Brewster family revolves around Karson.
"Karson's needs affect the whole family," Karson's mom, Michelle said. "Her brother and sister have had to give up many things."
Karson was born with 18q minus syndrome, a rare condition in which a
block of genes is missing from the "q" region of chromosome 18. One of
these genes is vital to the process of brain maturation and critical
thinking.
Michelle Brewster told her story to some 300 people who filled The Arc
of Frederick County headquarters Nov. 4, to discuss their anger toward
$30 million worth of budget cuts in August to services that help people
who have disabilities.
Some came in wheelchairs and carried signs, but all pleaded with state
legislators not to cut the funding that pays for the services they and
their families need.
"I worry one day we'll have to decide what to pay — the electric bill
or medicine for our daughter," Brewster said. "I feel the government
needs to spend some time with our families to see what we go through."
Karson is on a waiting list to receive services and help from the Maryland Developmental Disabilities Administration.
In the meantime, Brewster said she has had to quit her job to take care
of Karson, and the family struggles on just her husband's salary. Last
year, they had out-of-pocket medical bills exceeding $13,000, she said.
With the Maryland Board of Public Works considering another round of
cuts this month, the Brewsters and other families like them came to say
no more.
"I've lost hope and I've lost faith in the system," said Margie Allen,
president of The Arc of Frederick County, an agency that helps people
who have developmental disabilities. "This is neither a Democratic
problem nor a Republican problem. It's a human problem. What are we
really fighting for? It's not money, it's our lives."
In August, Gov. Martin O'Malley ((D)Dannounced, and the Board of Public
Works approved, $454 million in budget cuts to help the state's
lingering financial woes. Of that, there were $30 million in cuts from
the Maryland Developmental Disabilities Administration's budget of
$768.3 million.
This includes cuts to family support services, adult respite care,
group homes and financial assistance. The cuts could mean less money
for in-home care, special diets and a host of other expenses families
face when caring for someone with autism, Down syndrome, cerebral palsy
or other developmental disabilities.
There are 19,016 families on the state administration's waiting list. Of that, 681 are from Frederick County.
Listening to their stories were three members of the Frederick
delegation to the Maryland General Assembly: Del. Paul S. Stull
(R-Dist. 4A) of Walkersville, Del. Richard B. Weldon Jr.
(Unaffiliated-Dist. 3B) of Brunswick, and Del. Joseph R. Bartlett
(R-Dist. 4A) of Middletown.
"I'm absolutely blown away by what I've seen tonight," Bartlett said.
"And this is the type of energy we need when we go back to Annapolis
and lobby for you. And we will walk the walk and take that walk with
you when we head back in January."
But some residents became angry when Weldon suggested that they lobby
O'Malley, since the Maryland Constitution only allows the governor, not
the General Assembly, to add funding to the state budget. The General
Assembly only has the authority to cut money from the budget.
They shouted out, "Why did we elect you?" "Stop bailing out the banks," and "Cut your pay."
Weldon calmly explained the role of the state legislature. "The
Maryland governor is the most powerful governor in the 50 states,"
Weldon said. "According to the Maryland Constitution, we can't add a
penny to the budget."
Catherine Raggio, secretary of the Maryland Department of Disabilities, said she would share concerns with the governor.End The Wait Now Karson Elizabeth Brewster website
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Since Haiti's earthquake I have been searching for information on the disabled population in Haiti. A friend
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