Autism Speaks pulls controversial video; disability groups join to protest Autism Speaks campaign

This just in: According to Disability Scoop, Autism Speaks pulled the controversial "I am Autism" video from its Web site Oct. 1.

From the Autistic Self Advocacy Network (ASAN) and other organizations representing the Cross-Disability Community:

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the minuscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:
The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

Former Paralympian becomes first paraplegic to reach summit of Mt. Kilimanjaro

From Globe and Mail in Toronto. Here's Chris Waddell's blog about his trek.

At 19,340 feet, Mount Kilimanjaro is considered the world's highest “walkable” mountain. But don't tell Chris Waddell.

On Sept. 30, Mr. Waddell became the first paraplegic, on his own power, to reach the summit of Africa's tallest peak. Using his arms, he powered himself up the steep, loose, rocky terrain in a four-wheeled handcycle called the Bomba. Mr. Waddell hopes the journey will inspire other disabled athletes to stretch their own limits.

“If they're easy challenges, they're not memorable. So you push yourself. It's about living life to the fullest,” he told Outside Magazine earlier this year.

Twenty-one years ago, on a different mountain, Mr. Waddell broke his back while skiing. He went on to become one of the most decorated Paralympians ever, winning 12 medals in downhill ski racing over four Paralympic Games. The Utah native was also named one of People Magazine's 50 Most Beautiful People.

Now 40 and retired from competitive skiing, Mr. Waddell is climbing Kilimanjaro “unassisted,” meaning using his own strength. But he's not alone. A team of filmmakers, a doctor and several Tanzanian porters are on the trip, scouting the path ahead and providing moral and technical support. The team has fashioned a winch so that Mr. Waddell can climb on a fixed rope in certain portions without slipping backward. And in rocky areas, porters placed boards on the ground to help his wheels gain traction.

On Wednesday, after six days of climbing, Mr. Waddell was unreachable by satellite phone. But Bob More, a crewmate who headed down the mountain the night before the summit attempt, left a text message on Mr. Waddell's blog saying: “Assume he summited [this morning] and is on his way down. He is unreal.”

Justice Dept. reports first national study on crime against people with disabilities

The U.S. Dept. of Justice release:

WASHINGTON -- The first national study on crime against persons with disabilities was released Oct. 1 by the Justice Department's Bureau of Justice Statistics (BJS), Office of Justice Programs. In 2007 persons age 12 or older with disabilities experienced about 716,000 nonfatal violent crimes, including rape or sexual assault (47,000), robbery (79,000), aggravated assaults (114,000) and simple assaults (476,000). They also experienced about 2.3 million property crimes during the year.

Based on interviews for the National Crime Victimization Survey (NCVS), the study identified six types of disabilities among persons who experienced criminal victimization: sensory, physical, cognitive functioning, self-care, go-outside-the-home and employment. A disability was defined as a long-standing (six months or more) sensory, physical, mental or emotional condition that makes it difficult for a person to perform daily living activities.

To compare victimization of persons with and without disabilities, the study generated age-adjusted rates for persons with disabilities, who typically are older than persons without disabilities. The age-adjusted rate of nonfatal violent crimes against persons with disabilities was 1.5 times higher than the rate for those without disabilities (32 per 1,000 persons age 12 or older compared to 21 per 1,000).

Examining specific age groups, the risk of violence was higher for young and middle-age persons with a disability than those of similar age groups without disabilities. Persons age 12 to 19 and those age 35 to 49 with a disability experienced violence at nearly twice the rate as persons of the same age groups without a disability. The rate of violence did not differ by disability status for persons age 50 or older. Persons age 65 or older, with or without a disability, had the lowest rates of violent crime.

The age-adjusted rate of violent crime against females with a disability (35 per 1,000 persons age 12 or older) was almost twice the rate for females without a disability (19 per 1,000 persons age 12 or older). Males with a disability also experienced higher age-adjusted rates of violence than males without a disability (30 per 1,000 compared to 24 per 1,000).

Sixteen percent of violent crimes against females with a disability were committed by an intimate partner, defined as a current or former spouse, boyfriend or girlfriend. Five percent of violence against males with a disability was committed by an intimate partner. Among persons without disabilities, intimate partners were responsible for 27 percent of nonfatal violence against females and 3 percent of nonfatal violence against males.

More than half of violent crimes against people with disabilities were against those with more than one type of disability. Persons with cognitive disabilities had a rate of nonfatal violent crime higher than the rates for persons with other types of disabilities.

Nearly one in five violent crime victims with a disability believed that they became a victim because of their disability. Victims with disabilities perceived offenders to be under the influence of either alcohol or drugs in about a third of all violent crimes against them. Violent crime victims with or without a disability were equally as likely to face an armed offender, report the crime to the police or suffer an injury during the crime.

The 2.3 million property crimes against households with a disabled person included 527,000 household burglaries, 107,000 motor vehicle thefts and 1.7 million thefts; however, these estimates are believed to be an undercount as information about a disability was obtained only for if the person interviewed reported a disability.

Data in this report represent the first estimates of victimization of people with disabilities produced in response to the Crime Victims with Disabilities Awareness Act. Disability was measured in the NCVS using procedures developed for the U.S. Census Bureau's American Community Survey.

The report, Crime Against People with Disabilities, 2007 (NCJ 227814), was written by BJS statisticians Michael Rand and Erika Harrell. Following publication, the report can be found at http://www.ojp.usdoj.gov/bjs/abstract/capd07.htm.

For additional information about the Bureau of Justice Statistics' statistical reports and programs, please visit the BJS Web site at http://www.ojp.usdoj.gov/bjs.

The Office of Justice Programs (OJP), headed by Acting Assistant Attorney General Mary Lou Leary, provides federal leadership in developing the nation's capacity to prevent and control crime, administer justice, and assist victims. OJP has five component bureaus: the Bureau of Justice Assistance; the Bureau of Justice Statistics; the National Institute of Justice; the Office of Juvenile Justice and Delinquency Prevention; and the Office for Victims of Crime. In addition, OJP has two program offices: the Community Capacity Development Office, which incorporates the Weed and Seed strategy, and the Office of Sex Offender Sentencing, Monitoring, Apprehending, Registering, and Tracking (SMART). More information can be found at http://www.ojp.gov.

National Council on Disability releases study on health care for people with disabilities

From DREDF:

On September 30, 2009, the National Council on Disability (NCD) released a report entitled "The Current State of Health Care for People with Disabilities," calling for immediate health care reform for people with disabilities. DREDF led the team that researched and wrote this landmark report.

According to NCD Chairperson John R. Vaughn, "NCD undertook this study in 2007 to focus the nation's attention on the health care disparities experienced by people with disabilities, and to provide information and recommendations that can help to eliminate health care inequities for people with disabilities."

The report provides a road map for eliminating the pervasive barriers to health care for people with disabilities, highlights the health care disparities experienced by people with disabilities, and makes recommendations to eliminate health care inequities, including:

Amend the Minority Health and Health Disparities Research and Education Act to broaden the definition of "health disparity population."

Establish a technical assistance system through which states, health plans, clinics, hospitals, diagnostic and treatment centers, individual medical practitioners, equipment manufacturers, people with disabilities, and others can easily obtain centralized information on universal standards of care and related practical resources for ensuring full access to culturally competent health care services for people with disabilities.

Step up monitoring and enforcement of the ADA and Section 504 of the 1973 Rehabilitation Act for health care facilities and programs.

Ensure that reform of the health care system in the US responds to the basic needs of people with disabilities by making certain that health care coverage is available and affordable to all people with disabilities without pre-existing condition limitations.

People's Oct. 5 cover features Katherine Heigl's adopted daughter with a disability

By BA Haller
© Media dis&dat

It's wonderful to see such a joyful representation of disability, and to show a couple who actually chooses disability to be a part of their family. Hopefully, Katherine Heigl's growing status as an A-list Hollywood actress will help her become a spokesperson for adoption of children with disabilities. (Her daughter, Naleigh, is described as having special needs but her specific disability hasn't been disclosed.)

The cover of People is a good start in better representation of disability. Katherine Heigl and husband singer Josh Kelley obviously want to celebrate their child, and her disability is incidental.

A NY Daily News article Sept. 22 reports that many couples are choosing to adopt children with disabilities these days. And the People magazine article has a sidebar called "Special Needs Adoptions."

Given the huge circulation of People (3.6 million in 2008), the story can certainly help with positive imagery of the joy of adopting a child with a disability. The Oct. 5 People issue is on newsstands now.

Here's recent gushing by Josh Kelley about his new daughter:

"We adopted a baby from Korea, me and my girl, and she's awesome, dude! This girl is the bomb!" the singer, who's married to Katherine Heigl, gushed at a concert Sept. 18 in Oxford, Ohio.

The couple posted a photo of their adopted daughter from Korea last week. They named her Nancy Leigh – after Heigl's mother Nancy and sister Margaret Leigh – but call her by her nickname Naleigh.

At his show at Miami University, Kelley introduced a song he had just written about Naleigh, singing the lines, "Just to see you in mommy's arms is all I need."

"It's like I have Gerber all over my knee," Kelley told the audience, "and it doesn't even matter, I love it."

ICan House in North Carolina helps kids on the autism spectrum with social skills

From the Winston-Salem Journal in N.C. In the picture, discussing sportsmanship are (from left) director Kim Shufran, Kayla Vickland, instructor Allie Lindborg and Dylan Hayes.

Until Dylan Hayes started going to the ICan House, he rarely started a conversation.

"Not even a greeting," said his father, Kevin Hayes. "The first time he got in the car and asked ‘How are you?' I thought I was going to fall on the floor."

Dylan Hayes has Asperger Syndrome, a neurobiological disorder that makes normal social interactions difficult for him. Like their peers with autism, people with Asperger's find it difficult to read other people or fit in with groups.

He was obsessed with video games and did well in math and technical subjects in school, but he struggled in classes like language arts.

Dylan has been taking part in the ICan house for about a year now, and the results have been startling, his father said.

"The biggest thing was that there really was not anything else like this available in town," Hayes said.

Dylan is now a freshman at Mt. Tabor, and his father said the transition to high school is going surprisingly well.

ICan House founder Kim Shufran, a former health-management consultant, started the program last September after she got frustrated trying to find help for her daughter Erica, 12, who also has Asperger's.

It started as a resource center for parents of children with autism and related disorders, but the emphasis has shifted to social-skills classes in a club-like setting that allows the kids to learn from each other, Shufran said.

"It's about addressing the needs of those with social differences," she said. "To not do something, I thought, was a disservice to the community."

The ICan House now works with more than 60 families and has a projected annual budget of $125,000, supported by membership fees and through grants and donations.

The name comes from an emphasis on ability rather than disability.

"For years they've been told something's wrong with them," Shufran said. "We look at more what they can do than what they can't."

The ICan House is actually an old row house in the 800 block of West Fourth Street. Get-togethers are held on the second floor, overlooking a row of maple trees.

"I wanted to make it home-like, so it didn't feel like a clinic," she said.

There are different programs based on the age and needs of the client. Although many in the programs have been diagnosed with Asperger's or autism, a diagnosis is not required to be enrolled.

The ICan clubs focus on practicing social skills and learning through play in a peer setting. There are three groups, for elementary, early middle- and middle-school students.

Real World Humanities is a 10-session course for young adults, and it stresses developing self-esteem and relationships. And the Meet-n-Eat group is for adults who have difficulty in social situations.

Last week, program director Allie Lindborg led a group of six kids ranging in age from 10 to 12 taking part in an ICan club.

At first they seemed like a typical group of kids as they got caught up in a video game on the Wii.

But their cheerful play masked some serious social problems. The most talkative member of the group has Asperger's and sometimes made comments that didn't fit in with the rest of the conversation. Another refused to join in a group activity, instead spending time by herself, rocking back and forth with her arms wrapped around her knees.

Some are overly sensitive to outside stimulus, including a boy who politely turned down a handout because he doesn't like the texture of paper.

The lesson of the day was sportsmanship. They watched a video on the principles of sportsmanship, and took part in group activities and discussions about playing well with others.

Lindborg led the discussion, but didn't lecture. The kids drive discussions with their own answers or experiences.

"They don't think about the fact that they're learning, but they are," Lindborg said. She said she has seen them make strides.

Hayes said he hopes Dylan will continue with the program as he gets older.

"He likes going there because there are people going there who accept him the way he is," he said.

Chicago suburb plans educational, residential complex for young people with autism

From the Chicago Tribune:

An educational and residential complex for teens and young adults with autism is planned for the south end of Naperville on land that was to have been the site of a 32-unit housing development.

The Naperville City Council earlier this month unanimously gave zoning approval to Turning Pointe Autism Foundation to build an 18,700-square-foot school, which would serve 36 students between middle school and age 21. A 9,455-square-foot recreational facility also was approved.

A 3,000-square-foot residential duplex on the 6.44-acre property will remain as a respite house, and six other duplex buildings eventually will be constructed to provide transitional housing for 36 more young adults to develop life skills.

The project, located on the west side of Plainfield-Naperville Road between Hamlet and Saratoga roads, will effectively wipe out the Tramore subdivision, a 17-lot residential duplex community that the city approved in 2005.

Tramore was to have contained 32 duplex units in 16 buildings, but development stalled amid slow sales, and only one duplex, which was used as a model home, was built.

Founded two years ago, the autism foundation paid $3 million to acquire the site from owner KB Homes in November 2007, according to public records. Now, while the foundation plans to reuse the existing duplex, it eventually will vacate entirely and rip up Tramore Court, the lone, little-used public street now serving the property.

"After about a year of planning and visiting facilities, we decided to build a school that would serve 36 students and have a residential component to serve up to 36 young adults who suffer from autism," said Kevin Gallaher, a lawyer and the foundation's president, at the Sept. 14 City Council meeting.

"I would hope our residential setting will be a bridge for those [suffering from autism] who get kicked out of the [educational] system at age 22," Gallaher said. "We want them to learn how to cook for themselves, to clean for themselves, to be employed."

Councilman Richard Furstenau called the site "a special piece of property," given its location directly across Plainfield-Naperville Road from Naperville's 135-acre wastewater treatment facility.

"I don't know if [the previous development] didn't happen because of the economy or because of where it's sitting, but I do believe this is a real problem property, and I personally wouldn't buy a house across the street from [the sewage plant]," Furstenau said. "I guess there are people who do, but it's a real challenge, and this is a good solution to that."

Amputee takes to the Scottish links for Dunhill Championships

From Sky News in the UK:

Despite the pro' golfers, sports and film stars playing at golf's Dunhill Links Championships this weekend unheralded amateur Manuel De Los Santos (pictured)will attract plenty of attention.

De Los Santos is an amputee who lost his leg in a motorcycle accident seven years ago at the age of 18.

Up until his accident De Los Santos had been a promising baseball player on the verge of joining major league team the Toronto Blue Jays.

He is now playing golf off a handicap of three and is sponsored by Allianz to play on their satellite tour in France.

He moved to Paris from the Dominican Republic after his accident and having been inspired by the Will Smith movie The Legend Of Bagger Vance he went to his local driving range the next day.

Finding he still had an athlete's natural balance he struck the ball well and the managers of the range let him hit as many balls as he wanted to for free. So he did, hitting from morning until night.

De Los Santos is now fulfilling a dream by playing at St Andrews during the Links event which sees amateurs paired with professionals and playing at Kingsbarn and Carnoustie as well as the home of golf: "When I go back, I say to my friends, I play at St Andrews. This is enough for me."

Like all sportsmen De Los Santos is looking to improve and is hoping his week in Scotland will help, but he's not in the UK just to take part: "I come here for play better. To win the tournament, the Pro Am."

The Dominican has a simple approach to the game: "When I here on the golf course I don't think I have a problem. Only I know I have to punch the little ball in the hole."

Famed African author, now disabled, begins writing again

From Reuters:

ANNANDALE-ON-HUDSON, N.Y. - Chinua Achebe (pictured), the grandfather of modern African literature, first began telling stories as a means to reaching the truth. Fiction, he knew, could sometimes strike deeper than real life.

More than 50 years ago Achebe wrote "Things Fall Apart," a novel about an African tribe's fatal brush with British colonialism in the 1800s that told the story of colonialism for the first time from an African perspective.

Written in English, "Things Fall Apart" told a world audience about the upheaval that Africa had endured. It was translated into 50 languages and sold more than 8 million copies worldwide.

"In my mind, fiction has a level of truth which it must meet. This is what I learned in the process of writing," Achebe, 78, said during an interview in his bungalow in the small riverside town of Annandale-on-Hudson, north of New York City. "Sometimes the truth of fiction is more profound than the truth of journalism."

Wheelchair-bound after a 1990 car accident that cost him the use of his legs, Achebe still recognizes the importance of stories, both national and personal.

In October, he will release his first book in more than 20 years, "The Education of a British-Protected Child," a collection of old and recent essays that piece together the arc of his literary life. His story, and that of his native Nigeria, are closely entwined.

He attributes the lack of novels over the past 20 years to style. "You might say why have I not written 50 books," he said. "I write with caution. Less speed and more caution."

RETURN TO CHILDHOOD

"The Education of a British-Protected Child" begins with an essay about Achebe's childhood, growing up under British colonial rule, and moves into the sphere of ideas -- the problem with Nigeria, its lack of leadership, the legacy of colonialism.

"It is an attempt to fill in the details of my life," he said. "It is not to stand up and talk about who I am but tell stories in which I may not even appear but somehow if you read deeply I hope that you will encounter ideas and thoughts that will tell you how life has treated me."

In old age, Achebe is sharp but softly spoken, slowly spoken. He laughs easily.

Annandale-on-Hudson, where he teaches African literature at Bard College, is a long way from home. There are probably few places on Earth less like his native Nigeria, he said, than this leafy, well-kept campus village on the Hudson River.

His bungalow, fit with ramps for his wheelchair, sits at the end of a quiet wooded driveway on the Bard campus.

From his modest, low-lit living room, he makes sense of his life through anecdote. He remembers reading English books as a boy that told tales of Africa from the outside, depicting Africans as savages. In "Things Fall Apart" he sought to redress that imbalance.

"The story of my people was not the story of those African romances, the books written by British adventurers in which the white man was always the winner," he said. "It was going to be a different kind of story."

Achebe, in his new book, as in person, digs a moat around his personal life. Two stories that touch on family -- one about his daughters and another about his father -- are the shortest in his new collection.

The story of the car accident barely gets a mention. "It is better to talk about the things that belong to all of us. One is more comfortable doing that," Achebe said, running his hands down his still legs.

President Obama funds NIH with $5 billion to study autism, cancer, heart disease; largest funding ever for autism research

From Science magazine:

President Barack Obama paid a visit to the National Institutes of Health Sept. 30 to announce that the agency has given out $5 billion in stimulus money for over 12,000 grants. The bolus of money, though only half of the $10.4 billion NIH received to spend over 2 years, is "the single largest boost to biomedical research in history," Obama said.

About 500 NIH institute chiefs, employees, and dignitaries gathered in an auditorium at NIH's clinical center for the announcement, where NIH Director Francis Collins and his boss, Secretary of Health and Human Services Kathleen Sebelius, took the stage. Collins praised his staff's efforts to get the stimulus money out, which he said is "not just about doubling the recipe," but includes "some of the most innovative and creative directions for research that I have ever seen in 16 years at NIH."

He added that "millions of Americans alive today and millions more in future generations will live longer, healthier lives because of the grants we are announcing today."

Collins then introduced "our scientist in chief," President Obama, who had just visited a lab to see how brain cancer looks through a microscope. The $5 billion disbursed in the 2009 fiscal year, which ends today, will create "tens of thousands of jobs" through research staff, facilities construction, and orders for medical equipment, Obama said in a 15-minute speech. It will also help NIH recover from the last few years, when "we've seen our leadership slipping as scientific integrity was at times undermined and research funding failed to keep pace."

Obama highlighted three areas that the $5 billion will fund: an expansion of The Cancer Genome Atlas, which is assembling a catalog of mutations in tumors; studies on the genetics of heart disease; and research on autism treatments and therapies, the "largest-ever infusion of funding" for that area. The cancer atlas receive $275 million over the next 2 years, $175 million of it from stimulus funds.

Wheelchair user in Colorado saves girl from child molester

From Fox News:

Cameron Aulner doesn't think of himself as a hero. The wheelchair-bound Colorado resident says he just did what anyone else would do when he saved a little girl from a child molester right in the Walmart where he works.

Witnesses say a man sexually assaulted a young girl inside a Walmart in Westminster on Sept. 19, picked her up and then tried to flee the store, KDVR FOX 31 TV reported.

Aulner, 22, was working at the Comcast table in the front when he heard the commotion. He tackled the suspect, 34-year-old Kevin Salyers, before he could escape and held him until cops arrived, he said Tuesday in an interview with KDVR.

“It was something that happened so fast, I didn’t even think about it,” Aulner told the station. “I’m not a hero, I just did what you’re supposed to do.”

Salyers was arrested and charged with sexual assault on a child, police told FOXNews.com on Wednesday.

Aulner has been in a wheelchair since he fell from a roof while hanging up Christmas lights, he told the station. He said he might get an award from police for his actions.

Medical marijuana bill gains momentum in New Jersey

From The Star-Ledger in N.J.:

His bedroom bears all the telltale signs: the distinct, lingering odor of marijuana, the rolling papers tossed carelessly on the desk, a pile of lighters stashed in a bedside table. Christiane Oliveri pulls open her son Michael's desk drawer and there it is, plain as day -- nearly half a pound of marijuana.

Michael, 25, who suffered deep depression as a child due to the onset of debilitating muscular dystrophy, recently moved out to California and has come home to Oradell, in northern New Jersey, for his sister's wedding. The drugs, the smoking, the marijuana leaves plastered on the back of his wheelchair -- this is Christiane Oliveri's new reality. And she hopes it stays that way.

As New Jersey lawmakers consider legalizing marijuana for medicinal use, residents like Oliveri, a 54-year-old architect and artist from Egypt who says marijuana use transformed her son from a morose zombie into a self-confident, sky-diving optimist, are championing the cause.

At 5-foot-11, Michael Oliveri (pictured), who has been wheelchair-bound since the age of 18, weighs just 90 pounds -- "Ninety-five since he came home," Christiane Oliveri says proudly. "We're going for 100." His upper body is so skeletal, it seems dwarfed in proportion to his head. His bicep and tricep muscles have died, leaving his upper arms half the size of his forearms and making it impossible to straighten his arms completely.

Years of taking powerful prescription medications to ease pain from crushed discs in Michael's lower back have damaged his stomach to the point that he is permanently nauseous. "I wake up feeling like I'm going to throw up all over the place," he says, lying in bed on a hot August morning while his mother fetches the strain of marijuana that best helps him wake up and settle his stomach -- "Morning Sugar," it's called.

In the complex world of medical marijuana, all weed is not created equal. Michael Oliveri, who made a difficult move away from home for the first time nearly a year ago in order to live in California, where medical marijuana was legalized in 1996, has brought home about 10 types of marijuana. Strains like "Sour Diesel" and "Grape Ape" -- known as "sativas" -- are uppers, or "daytime weed." They are psychoactive, helping with alertness, and give Michael a much-needed appetite.

Strains like "L.A. Confidential" and "Grand Daddy Purple" -- known as "indicas" -- work as a muscle relaxer and offer the best pain relief, Michael says. They help him relax enough to go to sleep at night.

"Everybody thinks, 'oh, it's weed -- you get high,' " Michael Oliveri says. "The good thing about Cali is my choice of functional medication ... I can actually find a way to not get stoned, but be comfy -- be healthy."

This is difficult new ground for the Oliveris. Christiane Oliveri, a suburban mom who set up a local youth center so teenagers wouldn't get involved with drugs and alcohol, admits she "freaked" when Michael started using marijuana. Michael's father, Anthony, cut him off financially when he moved to California for the marijuana, and has only recently started to come around. He still looks on disapprovingly as his wife helps prepare Michael's morning hit of marijuana in a Volcano Vaporizer next to his bed.

"I did the journey of doctors with him," Christiane Oliveri explains -- specialists, deep-tissue massage, excruciating physical therapy, expensive chiropractic treatments. There were 27 epidurals. The medications, including more than two years on a morphine patch, were devastating for Michael. He grew withdrawn and lifeless, his mother says. "There was no Michael in there," Christiane Oliveri says. "Just a body and someone who is surviving. No food whatsoever."

Eventually, Michael ended up hospitalized from fecal poisoning -- a side effect of morphine is severe constipation. The near-death experience was the final straw for Michael. Over a gut-wrenching eight-month period, he weaned himself off morphine, gave up on doctors, and turned to the one thing he found, quite by accident, greatly helped his pain and nausea -- marijuana.

The transformation was stark, Christiane Oliveri says. Michael developed an appetite and started going out with his friends again and playing his bass. "I realized, wait, we have Michael back," she says. "He's actually happy. He's joining the family."

Michael is so thankful for marijuana that he has the THC molecule -- the active ingredient in marijuana -- tattooed on his right forearm, with a heartbeat line morphing into a symbol for infinity. "It's keeping me alive more than anything else," he says. "If I had not seen it with my own eyes, I would not have believed it," Christiane Oliveri told members of the state Assembly Health and Senior Services Committee this summer. "Marijuana is a miracle."

In February, the state Senate passed the New Jersey Compassionate Use Medical Marijuana Act, 22 to 16, with two abstentions. If enacted, the law would decriminalize marijuana use for people suffering from certain debilitating medical conditions such as cancer, AIDS, multiple sclerosis, glaucoma and epilepsy. A modified version cleared the Assembly Health and Senior Services Committee in June and is expected to be up for a vote after the Assembly reconvenes this month.

The New Jersey medical marijuana bill has made strange bedfellows of one of the Assembly's most conservative Republicans -- Michael Patrick Carroll, of Morristown -- and one of its most liberal Democrats -- Reed Gusciora, of Princeton. The two are among the primary sponsors of the Assembly bill. Gov. Jon Corzine has indicated he would sign the bill.

"Legislators really understand suffering. Suffering is universal," says Meagan Johnson, policy coordinator at the Drug Policy Alliance in New Jersey, which has advocated for medical marijuana laws. "We've found that there is bipartisan support for medical marijuana in the state of New Jersey."

Under the proposed law, doctors would be able to recommend marijuana to patients with whom they have an established relationship. Nonprofit groups would be allowed to set up "alternative treatment centers," which would be licensed and regulated by the state Department of Health and Senior Services. The centers would be permitted to grow marijuana and sell it to patients who have been approved by the Department of Health and issue a registry identification card.

The cards would have to be renewed annually. While marijuana remains a Schedule I substance under the federal Controlled Substances Act, the New Jersey bill notes that 99 percent of marijuana arrests are made under state law, according to the U.S. Sentencing Commission and the FBI. In March, Attorney General Eric Holder made clear that federal agents would no longer raid medical marijuana dispensaries that appear to be complying with state laws, a shift from Bush administration policy.

The New Jersey bill cites a report by the National Academy of Sciences' Institute of Medicine commissioned after the passage of medical marijuana voter referenda in California and Arizona. The study, completed in 1999, found cannabinoid drugs -- particularly THC -- have "potential therapeutic value" for pain, anxiety, nausea and vomiting, and appetite stimulation, but warned smoking marijuana was a poor delivery system for THC because of its harmful effects.

Opponents of New Jersey's medical marijuana law point to reports of rampant abuse of the law in California, where patients with questionable conditions can easily access legal marijuana. But sponsors of the New Jersey bill say they crafted the bill to avoid the most dangerous misuses by giving strict, centralized oversight to the Department of Health and limiting the amount of usable marijuana a patient can have to one ounce per month. The Assembly heath committee further tightened the bill by eliminating a provisions that would have allowed patients to grow up to six marijuana plants. The Assembly version also requires patients to pick up the marijuana in person, instead of sending a caregiver.

"There are 13 other states that have these laws. The New Jersey bill is based on the best practices of all those states," Johnson says. "Our law would actually be the most restrictive law in the country."

"I'm not stupid enough to say we're going to craft a perfect bill," says Democratic state Senator Nicholas Scutari, a primary sponsor of the bill and a practicing attorney in Linden. But the state already regulates a number of dangerous substances, Scutari says, including alcohol -- once a federally banned substance -- and tobacco, as well as the distribution of powerful and highly addictive pharmaceutical drugs. "I'm just saying we shouldn't treat it that much differently," Scutari says of medical marijuana.

Nancy Fedder, 62, a former database manager who lives with her daughter and grandchildren in Hillsborough, doesn't want to go to jail.

At home, when the pain resulting from her multiple sclerosis doesn't keep her in bed, she's the fixer-upper, the pet-rabbit feeder, the babysitter. But every now and again, she willfully and purposely breaks the law. She drives into New York City to buy marijuana from an underground cooperative of patients.

"I could probably go to a local high school and get some, unfortunately," Fedder says, but she trusts the co-op. "There's no Ecstasy thrown in there for an extra kick."

One of the downsides of the going to the co-op, however, is the long drive home. "I'm very scared," Fedder says. "I'm crossing state lines. It's in my car. I'm afraid of getting pulled over -- for anything, a busted tail light."

Johnson says people all over New Jersey are living with the same fear. "They don't want to be associated with criminals and feel ashamed that they're accessing their medicine on the black market," she says.

In her white shorts and loose printed blouse, her walker parked nearby, Fedder looks like anyone's grandmother, not a shifty drug user. But there are still whispers among parents at the local bus stop, where her grandchildren are picked up for school. Her open support for a medical marijuana bill has raised a few eyebrows in Fedder's prim, leafy suburb and it upsets her. "It's not an easy decision to make," she says.

Opponents of medical marijuana say people like Fedder are the exception -- extreme cases tricked out by activists to garner sympathy.

The majority of people who will benefit from a medical marijuana law, opponents say, are recreational users.

"The people who want to legalize drugs have financed this whole effort," says David Evans, a Pittstown attorney and executive director of the Drug Free Schools Coalition. "They are basically using sick people to further their agenda."

Numerous testimonies from patients, sincere though they may be, are not enough, Evans says. "We don't make medical decisions in this country by anecdotal stories," Evans says. "Otherwise, we'd just be approving medicine based on the way we did it a hundred years ago." The FDA trial process is not perfect, he says, but it's critical in protecting people from the potentially serious consequences of taking medication. To sidestep that process is simply "reckless public policy," he says.

Ironically, it was Evans who was instrumental in formulating the American Bar Association's position supporting medical marijuana in the late 1980s. "It's a very good argument," Evans says, referring to the testimonies of sick and dying people. As a cancer survivor and EMT, Evans is no stranger to pain and suffering, but he says after doing research into the harmful effects of marijuana, he regrets his initial support.

Evans also takes issue with the widespread belief that marijuana is essentially harmless, pointing to studies like one from Harvard Medical School two years ago that found marijuana, in any form, opens the body to the virus that causes Kaposi's sarcoma, a type of cancer. People with compromised immune systems, such as AIDS patients, would be particularly vulnerable.

As his children play in the backyard, Charles Kwiatkowski reaches behind a spice rack in a kitchen cabinet and pulls out a plastic tub of prescription medicines he keeps hidden from his three daughters. The container is stuffed with prescription bottles, including OxyContin, Neurontin, muscle relaxers and antidepressants. There are small yellow Post-its reminding him which side effects are caused by each drug: "nausea," "hot flashes," "dizziness." Another note says "suicidal thoughts."

Kwiatkowski, 38, who lives near the Jersey Shore in the town of Hazlet, suffers from multiple sclerosis. Complications from the disease have led to nerve damage in his spine and blurred vision. His head will often jerk involuntary. Sometimes the pain is so unbearable that he gets up in the middle of the night, stands in the corner of the living room, leans his forehead against the wall and tries to sleep standing up.

Eight years ago, Kwiatkowski's condition worsened and he no longer could continue his job as a computer programmer at AT&T. His physician prescribed a slew of medicines but the side effects -- severe nausea, weakness, even temporary blindness -- put a strain on his marriage and scared his children.

"I would scream at my children quite often and I didn't know why I was doing that. I'm really a loving dad," says Kwiatkowski, who keeps pictures of his daughters -- Allie, 9, Casey, 7, and Madison, 4 -- in every room of the house.

Kwiatkowski says using marijuana allows him to drastically reduce the prescription swings and go swimming and kick a ball," Kwiatkowski says.

"Without marijuana, I'm stuck in bed having muscle spasms most of the day." The marijuana, which Kwiatkowski inhales using a Volcano Vaporizer kept in a locked box in the basement, also helps clear his multiple sclerosis-related vision impairment, including the persistent "floaters" in his field of vision. "They're black spots just flying everywhere -- which keeps me from seeing my beautiful girls," Kwiatkoswi says. "If there's a medication that fixes your vision enough to see your children, that would be a medicine from God."

Kwiatkowski says a bag of vapor in the morning and in the evening -- his wife, Mary, locks the basement door when he is medicating -- is all he has needed since he started using marijuana several years ago.

"My eyesight gets better, my pain gets less and my balance improves 100 percent," Kwiatkowski says. "I lose the neuralgia feeling, where it kind of feels like someone is pulling the skin off your face."

When Fedder's granddaughter was 11, she started the school's D.A.R.E. program, which teaches children to avoid drugs. Fedder decided to sit her down and discuss her medical marijuana use, which she does out of sight.

"When we first started talking about it, she says, 'Grandma, that's so bad for you. It's addictive and it's illegal,' " Fedder recalled. She made a distinction between abuse of marijuana and the careful use of dangerous drugs -- such as her pills -- to alleviate pain. "She lives with me, she knows what I live with. She was very understanding."

Anti-drug groups have warned legalizing medical marijuana sends the wrong message to children and will increase young people's interest in trying it. Evans points to marijuana food products sold at legal dispensaries in other states that are marketed to imitate popular candy bars, like "Buddafinga," "Pot-tarts" and "Munchy Way."

Steven Demofonte, a 25-year veteran of the Mount Laurel Police Department who retired last year and testified against the medical marijuana bill on behalf of the New Jersey Fraternal Order of Police, expressed similar concerns. "Unfortunately, marijuana has been that gateway drug that so many young people that I've dealt with over the years begin with," he says.

But the bill's supporters openly scoff at this argument.

"How can it be more prevalent than it is today?" Carroll says. "If I want marijuana right now, I can get it in 10 minutes. If it's that easy to get, it's hard to see how anything we're going to do could make it worse."

Scutari pointed to the frequent abuse of prescription medications by teenagers, who raid their parents' medicine cabinets and hold "pill parties," where the medications are dumped into a party bowl and offered around. "These pills are widely available," Scutari says.

"The whole thing about what the children are going to think really comes to good parents versus bad parents," says Charles Kwiatkowski. "That's just a part of life."

There is widespread support for a medical marijuana law in New Jersey. In 2002, Rutgers University's Eagleton Institute of Politics conducted a poll that found 82 percent of residents support the use of marijuana for medicinal purposes if recommended by a doctor; 61 percent says they "strongly support" the idea.

The New Jersey poll reflects national polls on the subject. A Time/CNN poll conducted the same year found the vast majority of respondents -- 80 percent -- think marijuana should be dispensed for medical purposes. A similar poll conducted by the AARP in 2004 found 73 percent of people over 45 agreed.

But Demofonte says his organization is uncomfortable with the bill because law enforcement has reported spikes in crime in states where medical marijuana has been legalized. "People are shot and victimized who work in these facilities," Demofonte says. "There's street corner dealing that goes on around these facilities. It creates an excessive burden on law enforcement wherever these dispensaries have shown up."

The original Senate bill, Demofonte says, was "outrageous" because it loosely defined "chronic pain." He added that the Assembly's version, which removed chronic pain, just gives the illusion that it's more strict. In reality, a catchphrase allows the Department of Health to add conditions at its discretion.

"Can it help some people? There's no doubt in my mind . . . If it was solely for those few individuals who need it, I don't think there's anyone in this state that would say it's not okay for them to do it. I wish someone would come up with a bill that would target simply those people."

But Carroll, the state Assemblyman, sees it another way. Not long ago, he had a relative with ovarian cancer who was hospitalized seven times with severe complications.

"If her doctor had told me at the time that smoking marijuana would have increased her appetite," Carroll says, "I would have personally gone to the Green, called a press conference, found a drug dealer and bought it right there in front of everybody, including the attorney general, and dared them to arrest me."

NYT review of "The Horse Boy"

The review in The NY Times:

What do you do if your autistic son is unresponsive to treatment yet inexplicably soothed by the proximity of horses? If you are Rupert Isaacson and his wife, Kristin Neff, you take him to a country where horses are as essential as water: Mongolia.

“The Horse Boy” is a record of that extraordinary journey, a grueling weekslong trek across the plains of Mongolia in search of shamanic help for Rowan, their 5-year-old son. Plagued by inconsolable tantrums, chronic incontinence and severe dissociation, the boy is no one’s idea of a congenial travel companion; but as his parents endure discomfort, defeat and ritual floggings (“You’re not allowed to scream,” Mr. Isaacson warns his deep-breathing spouse), the director and photographer, Michel Orion Scott, finds a windswept beauty in surroundings so barren that the shores of Lake Sharga appear like a mirage.

Resolutely unvarnished (“I didn’t expect an urban slum,” Mr. Isaacson remarks on arriving in the capital city, Ulan Bator) and astonishingly intimate, “The Horse Boy” chronicles a couple in emotional and physical extremity. Though experts are on hand — including Dr. Simon Baron-Cohen, a Cambridge University psychologist and eerily look-alike cousin of the comedian Sacha — to tell us how little they know about autism, the film is not a primer on this heartbreaking condition. Instead it recounts a deeply personal, highly subjective and inarguably thought-provoking story of one family’s quest for a certain kind of peace.

THE HORSE BOY opens on Wednesday in Manhattan.

Flaws in Florida's screening system puts felons into group homes, assisted living facilities

From The AP:

FORT LAUDERDALE, Fla. - Flaws in Florida's background screening system have put children, seniors and the disabled in the care of felons with records that include rape, child molestation and murder, according to an investigation by the Sun Sentinel.

State law requires employees of day care centers, assisted living facilities and group homes to undergo a background check, but they can begin work before the screening is complete, the paper reported this week.

At least 2,400 day care workers were on the job before their records turned up, including a Tampa man with this note in his screening record: "EVIL DUDE-RAPE+KIDNAP+SEX ASLT," a statewide database of screenings since 1985 shows.

Hundreds of people in Hillsborough County charged with offenses such as theft, prostitution, robbery, arson and other crimes received state exemptions to care for children, elderly and the disabled, according to the newspaper's databases.

More than 2,000 screening records from the Tampa Bay area are listed. Pinellas County tops the local list with 2,240 records of exemptions. Hillsborough has 853. Pasco has 270.

Rehabilitation opens doors

One of the offenders is William Charewicz, accused of beating a 78-year-old man with Alzheimer's at a Pasco County assisted living facility in 2007.

He was convicted of battery on an elderly person and is serving a three-year prison sentence.

Charewicz pleaded no contest to stealing a car three months before he was hired and was on probation.

Even when criminal offenses are discovered, people can work based on little more than a promise not to break the law again.

Through an exemption system created by lawmakers two decades ago, Florida has cleared more than 8,700 people with criminal records to be caregivers. They include 45 murderers, 12 registered sex offenders and 200 people with histories of harming children.

Exemptions are supposed to be granted only with proof of rehabilitation, but about 1,800 of the people approved - 1 in 5 - were arrested again, some within days of the state's determination that they could be trusted to care for vulnerable people.

"It's totally unacceptable. Obviously, this has become a huge loophole that needs to be closed," said Nan Rich, D-Weston, vice chairwoman of the Florida Senate's Children, Families and Elder Affairs committee.

A sex abuse scandal at a Miami day care in the mid- 1980s prompted the first of several state laws requiring background checks for caregivers and allowing for exemptions.

Florida now has a patchwork system with glaring inconsistencies.

Employees at day cares and facilities for the disabled undergo a national criminal check. Caregivers for the elderly are checked only for offenses in Florida, with some exceptions.

Nursing home employees must pass a background check before they can work, but other caregivers can be on the job before the screening results come back, a process that can take months.

"All this time, these people are working," said Sandy Pillar, who tracks screenings at the state Department of Children & Families. "We've had people working in child care who were pedophiles."

In West Palm Beach, an employee worked for two months at a YMCA skate park before a background check revealed he was facing child sex charges in California. In October, a baby was severely burned at a Fort Lauderdale area day care while under the watch of a woman on felony probation who was working without a background check.

"We've got to do a much better job than what we're currently doing," said DCF Secretary George Sheldon. "We have a serious responsibility to protect kids."

Bartending restrictions tougher

Under Florida law, it's more difficult for felons to tend bar than to work in a day care center or nursing home. They must wait five years before they can serve drinks but only three years to get an exemption to work in child and adult care.

Two state agencies, DCF and the Agency for Health Care Administration, approve exemptions for caregivers. Little independent background investigation is done, and serious crimes are missed.

Lucia Rivera had a record for aggravated assault when she won an exemption from AHCA in 2005. She got a job at a Central Florida nursing home and last year was charged with stealing more than $36,000 from patients' accounts.

"Most of those people were bedridden, comatose," said Kathy Foust, a guardian for several victims.

Latoera O'Neal, an admitted cocaine dealer in Ohio, got an exemption from DCF to care for the disabled in 2004. Three years later, while working at a group home in Fort Walton Beach, O'Neal dragged a mentally disabled man out of a van by his feet, slamming his head on the floorboard and the pavement, an arrest report states. She now faces a charge of abusing a disabled person.

State lawmakers are pledging to reform the exemption process. "It sounds like they're being granted all too freely and that the exemption portion of (the law) needs a complete rewrite," said state Rep. Ari Porth, D-Coral Springs.

A blind man in Guyana finds his independence, becomes a leader

From the Stabroek News in Guyana:

Mark Archibald (pictured) became blind while he was working in the army a few years ago, but he plants and rears chickens to make a living.

A very positive person, he told this newspaper in a recent interview, “Not because I lost my sight my life is over. I still have worth and I realized that there were so many things I can accomplish if I believed in myself.”

Achieving his goals, he said is a difficult task but he was happy that he “is able to prove to my children that I can still do things. Even my children are amazed that I still have my skills.”

Mark pointed out proudly that he, with the assistance of his son, recently built a fence in his yard. He also does other chores on his own like cleaning the yard, “feeding the chickens and planting and reaping vegetables from my garden. I am even doing my own plumbing and running my own pipe lines…”

A staunch Christian, he said, “I believe I can get around and do things because of my faith in God. One of the mottos I left the army with has also helped me: ‘Whatever the mind can conceive and believe it can achieve.’”

But as he spoke about the Guyana Defence Force, there was sadness on his face. Mark said he was disappointed that he had not received “any assistance from the army; not even a basket when the Christmas comes or school clothes for my children.”

He said even though he is earning a living it was still a struggle to meet all of the needs of his wife and five children. Two of his children are in high school, one is attending primary school and another one is in the army while another child is looking for a job.

He said that he had to “pinch” the little earnings he has to purchase school items for his children and a combination chair for one of them to start secondary school this year.

He recalled that just after losing his sight he was devastated and spent about three years in distress not knowing how to move on. “It was a very difficult period for me and I saw it as a test from God.”

He pointed out that he was in the process of renovating his house and when he became involved in the accident that resulted in him being blind, and everything was left at a “standstill.” There were no walls and a section of the roof was incomplete.

His wife, Judy Archibald who told this newspaper, “I am his eyes now”, said, “We used to get wet whenever rain fall… things were difficult but I went through it all with my husband and I am still committed to him. We stood up with God’s strength; we don’t have to sit and live in poverty.”

They were both very grateful to President Bharrat Jagdeo whom they described as a very “generous man,” for providing them with zinc sheets to complete the roof. They said the President was on an outreach visit to the area and they explained their dilemma to him and he willingly agreed to assist.

As if life were not bad enough, their water supply had also been disconnected at the time because they could not afford to pay for the service.

And after they explained the situation to the President he gave instructions for it to be reconnected.

Judy recalled that during the three years that her husband did not have a job they resorted to going into the backdam to “pick coconuts and sell…” As she said that, Mark remarked with a smile that he could still climb a coconut tree.

Meanwhile Mark said the President also granted his request for a new nursery school to be built at Seafield Village as the one housed under the primary school was not convenient for the children.

Further, he pointed out that President Jagdeo had asked what project was needed for the area and he mentioned a community centre which has since been built.
Disabled People’s

Mark who is President of the Disabled People’s Network (DPN) in Region Five said the community centre is located in the compound of the cricket ground and that a “blind cricket” match would be held there on Sunday October 4. A fee of $300 for adults and $200 for children would be charged for admission.

Mark played for the Blind Cricket Association when it was established in 2007 and represented Guyana against Trinidad and Barbados. He said that in the cricket match “your ear is your eyes; you have to listen for the ball which has a bell in it.”

He said President Jagdeo would be invited to grace the event and “to bowl the first ball to declare the match open. We also want the President to see the good work we are doing here after he helped us to get the building.”

He pointed out that the building is also being used by members of the DPN for a Skills Training Centre where they develop their skills in craft making.

On the day of the cricket match the group will hold an exhibition and sale of the items they have created including floral arrangements, chair-backs, placemats and kitchen towels. The funds raised would be put towards keeping the centre going. The exhibition would also help to showcase the talents of the members.

The group recently acquired a sewing machine from the Ministry of Human Services and Social Security so members will have an opportunity to learn how to sew.

Mark pointed out that the members are eager to start cooking and cake decorating classes but the building needs to be extended and equipped with kitchen facilities before that can happen.

Members visit the centre on Mondays for the classes and Mark said “we can do a lot more [craft] but we lack the materials. We would be very happy if persons can assist us. We have to purchase the materials on our own.”

Further, he said when persons with disabilities receive assistance “they feel very special to know that others care for them.”

He was pleased to disclose that the Neighbourhood Democratic Council had purchased materials worth $15,000 for the group. Ice-cream sales, he said, were also held in April and July to raise funds.

The purpose of the DPN, he said is to “lift the moral standards of the members and help them to become self-reliant. We also need them to learn a skill to get jobs.” Members are also engaged in making pepper sauce and achar and bottling them to sell.

The organization has to find $3,000 weekly to transport members to the centre for the craft classes as well as an additional sum to provide snacks.

Last December an exhibition and sale was held and most of the craft items were sold.

Mark is urging persons to support the cricket and exhibition on Sunday and is hoping to attract more persons to purchase the craft this time.

According to Mark, “Persons with disabilities have a lot of potential and we do not want to deprive them… If they are given the green light and assistance to develop they would do well.”

Pansy David, vice-chairperson of the DPN who was present during the interview, proudly told this newspaper, “I did not know I had potential until I joined the organization.” She said the organization “helps persons to discover and develop their hidden talents.”

One of the teachers, Brenda Fordyce who is volunteering her services at the centre told this newspaper that she feels “good to share; it’s good when you can share and help somebody. They might be disabled but they can still elevate themselves.”

Further she said she is happy to see them develop their talents and to know that they can be at home and still earn a living.

Mark is hoping that donors and the government can “come forward and assist the organization. We are not only talking, we are working. Disabled persons can be treated better and be more recognized.”

Further he said, “It is my dream for our bill [of rights for the disabled] to become a reality so persons with disability can access school and certain rights like all citizens of Guyana. Some persons with permanent disabilities are still not getting [public] assistance.”

There are also plans for the organization to start, joinery and masonry in January. A letter has been sent to the Ministry of Human Services and Social Security, requesting funds to purchase an electrical saw and other equipment.

Mark said too that as part of their work plan for this year, the organization would be visiting schools to “enlighten the teachers and students to acknowledge persons with disabilities.”

Meanwhile, Mark told this newspaper that the DPN, made up of strictly persons with disability, was a part of the Community-based Rehabilitation (CBR) programme, but had branched out on its own in 1996.

He recalled that after he became blind his world seemed hopeless and he lingered on his misfortune for over three years before finally moving on with his life.
However, he did not do it on his own – actually he was grateful to have met the chairman of the National CBR Committee Gregory Glasgow who introduced him to the CBR in Region Five.

After that, he said, there was no turning back as he too has been able to recognize his true capabilities. “I never realized that as a blind person I would have been able to do work like plumbing and running my own pipeline… no one taught me how to do that but the organization taught me how to use my initiative.”