Maryland artist says autism positively influences her work

From WJZ-TV in Baltimore:

PARKTON, Md. ― Katie Miller is an exceptional artist and award winner who says her autism is a positive influence on her work.

Ron Matz reports the Maryland Institute College of Art graduate is about to head to one of the world's biggest stages.

From the provocative to the innocent to the vulnerable, these are the people and faces of Baltimore artist Katie Miller.

"The majority of my artwork is about the relationship between the mundane and the surreal, and how it relates to changing contemporary notions of childhood," Miller said. "I'm interested in things that look like they may be scenes from every day, but when taken out of context they seem very odd or abnormal."

She is active in the autistic rights movement.

"Most of us are quite happy the way we are. We don't want to be cured. We're offended a lot by a lot of the media portrayals of autism as devastating and tragic and needing to be fixed because we are people the way we are," said Miller.

Katie was just named a winner of the Wynn Newhouse Award for artists with disabilities. Next month her "Child Standing on a Dresser" will be part of the prestigious VSA Armory Show in New York.

In 2006, Katie studied in Italy and then she graduated with honors from the Maryland Institute College of Art.

She's an extraordinary artist who sees her autism as a gift.

"I think of autism as a gift because it gives me an excellent attention to detail. I'm able to stay in my studio for really long periods and not notice anything else. I'm very sensitive to color, to detail, to line and shape and that really helps my art," she said.

The Armory Show in New York will be March 5-8. More than 50,000 people are expected.

Inventor says dyslexia gave him insight for his creations

From the Belleville News-Democrat in Illinois:

Winfield Matsler (pictured) wants to patent something every year until he dies.

The 51-year-old Belleville inventor already is associated with seven patents, including one he owns for an aircraft and another pending for a motorcycle seat cushion.

Not bad for a dyslexic who struggled in high school and delayed going to college, Matsler said. If it weren't for his condition, he said he might have taken a traditional route and become an accountant, doctor or CEO.

He credits the dyslexia for his ability to escape the mainstream.

"With dyslexia, you see things backwards," he said. "Letters get changed around. With 'stop' you see 'spot.' It made me see things that possibly others didn't see, like a problem and a different approach to solving the problem."

To patent something once a year is "not unreasonable, it just takes money," he said. Ideas are cheap, and he said he's got plenty of those.

The key is making the ideas tangible so others can see how an invention could benefit humanity.

Matsler hopes his latest invention -- an ergonomic motorcycle seat cushion that uses polyurethane and air to contour and support the rider's body -- will help fund future inventions.

The patent was pending in January.

A classmate from design school said Matsler excels at addressing "the human interface of mechanical devices."

That's what he is doing with the motorcycle cushion, which uses similar principles that wheelchair cushions use to keep tissue from dying. Matsler's intent is to keep himself and other motorcyclists comfortable.

"When you're on that motorcycle for 100 miles, 200 miles, it hurts," Matsler said. "What my invention does is allow men not to cramp their packages."

His cushion also absorbs vibrations of high frequency produced by the motor and low frequency from road noise.

"Your skeletal system is absorbing these vibrations, and they will make you tired, even fall asleep," he said.

Craig Raymon is the friend from design school and rides a cruiser. He was one of the many friends from whom Matsler sought feedback.

"I get a big grin every time I get a call from him because, even if you're busy, a few minutes later, you want to share in his discovery and his process and see his new prototype," Raymon said. "Winny's always been kind of a quirky, idealistic, eccentric designer guy."

Matsler studied philosophy at Southern Illinois University Carbondale before a friend suggested product design with an emphasis on special populations. He solidified the career switch after a summer college trip to Port Au Prince, Haiti, where he worked with a Catholic church that took care of disabled children.

"We built wheelchair accessible ramps, railing for the bathrooms, a rehabilitation tool that helped underdeveloped children take their first steps and learn to walk with the correct gait," he said.

After graduation, Matsler worked for 13 years as a product designer for The ROHO Group Inc., of Belleville, and nearly six years for Star Cushion Products Inc., of
Freeburg.

Matsler's "smiling attitude" helps him get past negative feedback to make a better product, Raymon said.

"To people who want to be inventors, the obstacles will be other people," Matsler said. "They get excited about that idea, they share that idea and other people criticize it unduly."

Something Matsler learned long ago from his parents, retired educators Franklin and Lois Matsler, helps him cruise pass criticism: "If you make others succeed, that's a measure of success."

That is why whenever a young person shares an idea with Matsler, he tells them to take their passion and run with it. But sometimes it takes a mentor to discern a practical project from an unrealistic one.

Before a friend encouraged Matsler to pursue the more lucrative cushion design, Matsler dabbled with a fond idea -- the patented Rotating Buoyant-Winged Aircraft.

The aircraft -- a garlic-shaped balloon atop a black body that holds the motor and propellor -- is an unmanned aerial vehicles that isn't built for speed, but for economy and endurance.

"It reminds me of a worm that sucks on the floor of a riverbed," Matsler said. "And the funny looking balloon is the best I can do with the money and technology available to me. If I had the money to pursue the project, I'd make it into a butterfly."

The aircraft now hibernates in his basement, where motorcycle cushions eventually will be packaged and shipped to customers. Other evidence of his work reside elsewhere in the house.

A different seat cushion representing one of his designs can be found on each hard chair at the kitchen table. Sketches of prototypes line a dining room wall. Rolls of polyurethane lie near a tool bench and vacuum forming machine in his garage.

Pieces from local artists, and his older brother's original works, adorn Matsler's walls. "Art makes me happy, and I can't invent when I'm unhappy," he said.

Personal experience, like time spent on his Triumph Sprint sport bike, also inspires ideas. Ideas percolate when he's submerged in water or surrounded by people.

"When I swim, my mind's kind of resting," Matsler said. "I'm really people-dependent as far as ideas go. It takes people to define concerns that really need to be addressed."

He structures his time around swimming four miles a week, a Swansea Rotary Club meeting Thursday mornings and daily doses of news between 5:30 and 6 p.m., when he doesn't answer the phone.

The best ideas snatch him from his routine, and when they do, he boils a pot of generic Chinese tea and goes to work.

"When I get on a roll, I roll until it's done," Matsler said. "And sometimes there's a pressure for me to get something done, and pressure evokes ideas out of necessity."

At least for now, he may feel less pressure where he sits.

Gene may link autism, digestive problems

From USA Today:

Researchers are studying a gene that may cause both autism and gastrointestinal disorders, a study in March 2's Pediatrics reports.

More than 30% of people with autism also have some kind of stomach or intestinal problem, compared with fewer than 10% of people who aren't autistic, says study author Daniel Campbell, research assistant professor at Vanderbilt University.

Campbell is focusing on a gene called MET, which is involved in brain development before birth and in connections between brain cells after birth, as well as in the process through which the gastrointestinal system repairs itself. In his study, a variation in this gene was associated with both autism and gastrointestinal problems in 118 of 214 families. But researchers found no link to the genetic variation in autistic patients who didn't have gastrointestinal problems.

That suggests the genetic variation may be responsible for causing autism in this specific group of people, although it may not be related to other cases of autism, Campbell says.

As scientists learn more about the disease, Campbell says, it appears that autism is not a single disease but a spectrum of disorders with common symptoms but different causes.

Campbell's research was financed by the National Institutes of Health, a private group called Cure Autism Now and other sources.

Some researchers say Campbell's findings, although intriguing, are preliminary.

Hakon Hakonarson, an autism researcher and director of Children's Hospital of Philadelphia's Center for Applied Genomics, says it would be surprising for one gene to be responsible for the wide variety of problems included in the study: chronic constipation, chronic diarrhea, reflux, irritable bowel syndrome and ulcers.

Researchers need to try to replicate their findings in a different group of people to prove that the results were not just the result of chance, says Hakonarson, who was not involved in the study.

Campbell says he's working on a more definitive study. In his current paper, he relied on parents to describe their children's gastrointestinal difficulties. In his new project, children will be seen by a gastroenterologist, who will be able to confirm the gastrointestinal problems.

Blind singer Scott MacIntyre is ready for your "American Idol" vote tonight

Best wishes to Scott MacIntyre on tonight's performance and I hope millions of people will call in to support him.

The Arizona Republic has a story about a woman who gave MacIntyre her kidney two years ago, and of course, is rooting for him tonight:

Even before he landed on "American Idol," the Valley's Scott MacIntyre touched a lot of lives through his music. But Patricia Cosand of Tempe has a special bond with the singer.

Two years ago, MacIntyre was diagnosed with a failing kidney. Cosand responded by donating one of hers to the young musician, and saved his life.

"I thought this was something I could probably do," says Cosand, who is a teacher. "He's just a very gifted and skilled young man."

Walter Cosand, Patricia's husband, was MacIntyre's piano teacher during his years at Arizona State University. He, too, noted how exceptional MacIntyre's abilities are.

"He is a remarkable pianist, and always very positive," says Walter Cosand, who began working with him when MacIntyre was 14 years old. "Just everything about him is remarkable."

MacIntyre was diagnosed with kidney disease in 2005. He spend 10 months undergoing dialysis, which severely limited his ability to perform or travel.

"I remember not having enough energy to sit and vocalize at the piano," he recalls. "Singing is a muscle thing and you're pushing out air, and I just couldn't do that for any length of time."

After the MacIntyres began looking for donors, four potential candidates were disqualified before Patricia Cosand was approved. A few days before the surgery, the Cosands spent an evening with the MacIntyres.

"His mother was in tears, telling me how I was such a blessing to their family," Patricia recalls. "We all prayed together that it would go well for both of us."

The surgery was performed at the Mayo Clinic Hospital in Phoenix. It was a success, for both patient and donor.

"She is such an amazing person, and so humble," Scott MacIntyre says. "Sometimes, it literally brings me to tears to think about it. It's just an amazing gift; literally, it was the gift of my life."

"It was neat," Patricia says simply. "It was a huge answered prayer."

It wouldn't be a surprise if there were some divine intervention involved. After all, MacIntyre has racked up a staggering list of accomplishments for someone just 23.

He began training in classical piano at age 5. At 14, he began studying piano performance at Arizona State University; the following year, he debuted with the
Phoenix Symphony as a guest soloist.

He was named a Marshall and Fulbright Scholar and received a master's degree from the Royal College of Music in London in 2006. He graduated from ASU at age 19; by
that time, he had already performed throughout the country with his family and released independent CDs.

In 2008, he appeared with his family at the John F. Kennedy Center for the Performing Arts after being honored by VSA Arts, a non-profit organization based in Washington, D.C.

MacIntyre's achievements are even more impressive when you consider that the musician is legally blind. He was born with Leber's congenital amaurosis, which has impaired his vision since birth. His field of vision is about 2 degrees.

"It's like looking through a straw at the world," MacIntyre told The Arizona Republic last year. "Because of the lack of vision, I tried to fill that space with sound."

Because MacIntyre has received a lot of airtime during this season's early "American Idol" episodes, he has emerged as something of a front-runner. The producers haven't shied away from mentioning MacIntyre's impairment. He even had a little fun with it last week, as he was seen dancing with his red-and-white cane.

"That was my idea," he admits. "I like to break the boundaries that people conceive about me being visually impaired."

On the other hand, he hopes he won't wind up being labeled "the blind guy," though he knows it may be inevitable.

"It's a little funny to think about that," he says. "In the episode this season when that all blew up, it was nice to see (me called) 'Scott MacIntyre' instead of 'the blind guy.' But I know it's a quick way to refer to people, and in the end, if anyone remembers me, I hope they go look up 'the blind guy' and find it's Scott MacIntyre."

Indeed, he has a good sense of humor about the whole thing and is used to joking about it.

"I always kid him that he must be part bat, because you often don't know he can't see," Walter Cosand says. "At the keyboard, he's a very accurate marksman."

The Cosands are having fun watching "American Idol," which is a new experience for them. "I'm a classical nerd," Patricia admits. "I'm really rooting for him."

She was a bit surprised at how easily he handles pop music.

"It wasn't a side of him I was really aware of," she says. "But he's not just someone who thinks he can sing: He's really a fine musician."

She has stayed in touch with MacIntyre since the successful operation two years ago.
"He called me on the anniversary of the surgery, and he says, 'Of course, I was thinking about you today,' " she says. "It's a very unusual connection."

But it means if he goes far on TV, the Cosands can feel as if they played a role in his success.

"I always call him my wife's singing kidney," Walter says, with a laugh.

Music therapy may help kids with autism

From The Washington Post. In the picture, at the Kennedy Krieger School's Montgomery County campus, Austin Hall, above right, plays with music therapist Leanne Belasco, on guitar.

When it's bath time for Janna Simpson, her mother sometimes throws together a tune. "Take a bath, take a bath, take a bath," Judy Simpson might chant, luring her daughter into the water.

Janna isn't a toddler, and her mother isn't simply singing along. Janna is a 15-year-old with autism, a speech impairment and a seizure disorder. Music, Judy Simpson says, has been key to getting her to engage in such everyday activities as taking a bath; it's also an alternative to verbal instructions in helping her overcome social and behavioral problems.

Janna, who never developed normal speech, receives formal music therapy at West Virginia's Hedgesville Middle School, where she is enrolled in a classroom for students with autism. Her mother, a former music therapist who is director of government relations at the American Music Therapy Association, based in Silver Spring, continues with that therapeutic approach at home.

"Latitude, longitude, looking through a microscope: Such skills are not important," Simpson explains. "She needs basic skills to live, such as brushing her teeth, taking a bath, the pragmatics of engaging with people. This is a difficult thing to teach."

Simpson's confidence in music therapy is based on her own experience and that of other parents of children with autism who are eager to find ways to increase their children's ability to function. But exactly how and to what extent music therapy works is not well understood. Just over a year ago, a session titled "The Autism Agenda" at the American Music Therapy Association conference stressed the need for more research and for practice to be based on evidence.

Despite the limited data about its effectiveness, making music has become an integral part of many programs for children with autism. Leanne Belasco, a music therapist at the Kennedy Krieger School's Montgomery County campus in Rockville, says music gives structure and a predictable rhythm to verbal directions. When Belasco strums her autoharp to her students, she sings encouraging, instructive lyrics such as, "I know I have what it takes; I am a good listener" and "Be flexible."

At the school, where all 37 full-time students are enrolled in music therapy, Belasco begins her 30- to 45-minute sessions by singing a refrain: "Hello, everybody, it's time for music today."

She wheels around the group seated in a horseshoe formation, addressing each student in song as she does so. A 16-year-old, who regularly wears headphones in
class because of his auditory sensitivities, responds with apparent enjoyment, as does a younger boy, who strums the autoharp with seeming pleasure as he rocks back and forth in his chair. When Belasco asks her students to shake the blue plastic maracas she has passed out, classroom assistants help. When one student seems pained by the exercise, the assistants physically settle him in his chair.

Despite the benefits associated with music, there are special challenges for children with autism. "Some students are sensitive to sirens and vacuums; some are sensitive to music, to specific instruments or the frequency of the instrument," says Linda Brandenburg, director of school autism services at Kennedy Krieger, which is based in Baltimore. The music therapist gradually eases students with such auditory sensitivities into the group.

For higher-functioning students on the autism spectrum, music can be a creative outlet in addition to helping regulate behavior, therapists say. At Rockville's Frost School, for children with emotional disorders including those on the autism spectrum, ninth-grader Donny Toker has enjoyed music from a young age and now composes jazz and rock pieces, which he has performed at family gatherings and at school. His mother, Nancy Toker, says music helps him focus and relieves anxiety and frustration. "When he is in a musical environment, he is able to interact with his peers, and his conversational skills are appropriate, " Toker says.

Creating studies to assess the benefits of music therapy is a challenge. Petra Kern, a professor of music therapy at the State University of New York at New Paltz and one of the organizers of the Autism Agenda conference, says it is difficult to conduct autism research using randomized controlled trials because autism is a spectrum disorder and individual behavior varies greatly. She advocates learning as much as possible from groups of related individual case studies to understand how and why music therapy works.

Catherine Lord, a professor of psychology at the University of Michigan specializing in autism research, says, "We know that music therapy treatment is associated with improvement, but we don't know what the cause of that improvement is." Studies suggesting positive results for music therapy, she says, typically "don't control for what you need to control to find out what causes the change." Students may improve because of factors such as the therapist's enthusiasm and attention rather than the music itself.

Lord notes that she would support the use of music therapy only if it could be shown that it helped to decrease problem behaviors and also if it was clearly determined that students with autism enjoyed the therapy. Many people with autism lack forms of entertainment and relaxation, so providing effective behavioral treatment that is also pleasurable would be worthwhile, she says.

Mijin Kim, a music therapist at the Beth Abraham Institute in New York, says music may be effective because it complements the cognitive abilities of people with autism, which include a strong inclination for creating patterns.

"Music is inherently structured and patterned," she says. "You can see people with autism who are hypersensitive to sound but respond differently to music because of its structure."

Hawaii tries to stretch general assistance to poor and disabled people by cutting payments in half

From the Honolulu Advertiser:

The state plans to cut monthly general assistance payments to the poor and temporarily disabled by half or else the program may run out of money before the end of the fiscal year in June.

The state Department of Human Services will slice the monthly payments from $469 to $234 per person from April through June. The full payments will be restored when the new fiscal year starts in July, but the Lingle administration, looking to close the state's budget deficit, has called for a lifetime limit of one year.

The general assistance program serves about 5,150 of the poorest and most vulnerable people in the state. The monthly cash payments, which can be used for staples such as food, clothing and housing, are intended for people who have little or no income and are unable to work because of a temporary disability.

"There have been reductions before. This is actually a slighter and shorter duration reduction than what we thought we were going to have to do," said Lillian Koller, the director of the state Department of Human Services.

According to the department, the state Legislature provides about $31 million for both general assistance and aid to the aged, blind and disabled through a block grant. The monthly payments under general assistance were increased in the current two-year budget but the overall block grant did not change. So as the caseload grew because of the falling economy, money in the program evaporated.

Koller said another factor is many people are staying on general assistance longer because of delays in getting federal recognition of a permanent disability to qualify for Social Security benefits.

"We think, from a policy point of view, it's better to have folks receive a reduced amount and have some reasonable amount of money," she said.

One bright spot, Koller said, is that people on both general assistance and the federal food stamp program should expect an increase in food stamp payments in April because of the federal economic stimulus package approved by Congress and President Obama. People on general assistance who are in public housing will also likely see their rent reduced because their income will have declined.

Advocates for the poor, while recognizing the state's budget shortfall, are criticizing the Lingle administration and state lawmakers for the cut.

The Welfare and Employment Rights Coalition plans a news conference tomorrow morning to urge lawmakers to take money from the state's rainy-day fund to maintain general assistance payments during the fiscal year.

In a statement, the coalition said "the governor and Legislature are balancing the state's budget on the backs of those least able to stand up for themselves, including the temporarily disabled."

"It is absolutely impossible for a human being to live in Hawai'i on a cash budget of $234 per month," Joel Fischer, a professor at the University of Hawai'i-Manoa School of Social Work, said in the statement. "Let the governor and the legislators try to live on that amount for even a week to see what really will happen to these thousands of disabled community members."

Lawmakers who oversee human services are sympathetic to the advocates but agree with the state that the cut is the best alternative. Half payments, they argue, are better than no payments. In addition, if there is still money in the program left over at the end of the fiscal year, it would be divided equally among people on general assistance.

"We were faced with cutting it in half — at least they'll have something through June — or keeping it at the $469 per month and then ending it early," said state Sen. Suzanne Chun Oakland, D-13th (Kalihi, Nu'uanu), the chairwoman of the Senate Human Services Committee. "It's a bad situation. We don't want to go this route."

Since general assistance is not an entitlement program where people have a legal right to the payments, the caseload must be contained by the amount of money provided by the Legislature.

The monthly payments are capped at $469 but can be adjusted downward if the caseload grows too large.

The Lingle administration could ask lawmakers for an emergency appropriation, but the state is struggling to close a deficit for this fiscal year and has already tapped much of the rainy-day fund.

"It's a tough pill to swallow during these most difficult times," said state Rep. John Mizuno, D-30th (Kamehameha Heights, Kalihi Valley, Fort Shafter), the chairman of the House Human Services Committee.

Kansas thaws freeze on home health care, new applicants being accepted

From The Wichita Eagle:

A system to provide home- and community-based services to disabled people, frozen since December, thawed some on March 2 when the state announced that it will once more begin accepting applicants into the program.

The Department of Social and Rehabilitation Services lifted the three-month freeze it had placed on the physical disability waiver program.

The Medicaid-funded program provides assistance to disabled people who want to stay in their own homes rather than moving into nursing homes.

The hard freeze will be replaced with a "rolling waiting list," allowing one new person to enter the system for every two who leave it.

"That's good, that helps," said Sen. Dick Kelsey, R-Goddard, who supports home and community services for the disabled. "These people really need that help."

SRS Secretary Don Jordan said he lifted the freeze to comply with the will of the Legislature, which recently added $2 million to the budget to fund a rolling waiting list.

But Jordan also cautioned that the money may not be enough to keep it going.

"Without additional funds, we will have to reinstate a freeze on this program at a later date," Jordan said in a statement. "While we would like to lift this freeze permanently, there simply is not enough money."

SRS is facing about a $4 million shortfall for 2010, the agency reported.

The freeze had been expected to continue for at least another month while the state grapples with a projected deficit of about $800 million for 2010 and awaits details on what relief to expect from the recently approved federal economic stimulus package.

SRS instituted the freeze on Dec. 1 after an unexpected jump in applications raised the program's enrollment from about 6,500 to 7,300.

Getting the freeze lifted had emerged as the No. 1 issue among advocates for the disabled, who hailed Monday's announcement.

David Calvert, a board member of the Wichita-based Independent Living Resource Center of Kansas, called the lifting of the freeze "great news."

"Talk about a win-win situation," he said. "It's great for the people with disabilities who need these services. It's great for the taxpayers, who want to save money."

Under current state and federal law, nursing home care is considered an entitlement, while home- and community-based care is optional.

Advocates for disabled people say that doesn't make much sense because it usually costs less to serve people in their own homes than to pay for them to live in nursing homes.

On Sunday, The Eagle reported on how the state of Vermont has been able to serve more people without busting its budget. Vermont did that by eliminating the bias toward institutional care and giving disabled residents more choice in how they get assistance.

Kelsey said he thinks the Kansas Legislature will take corrective action before the freeze has to be reinstated.

"I'm optimistic we're going to address the whole issue," Kelsey said. "I think basically we're getting the message out that this is an area that needs some attention."

Kansas budget freeze for home health care may force disabled people into nursing homes

From The Wichita Eagle. This story shows the state's misunderstanding of the costs for staying at home. Study after study shows that people with disabilities living at home is cheaper than living in a nursing home. In Wisconsin, the Community Options Program (COP) says care in people’s own homes and other community settings is 29% less than the average public cost of nursing home care ($60.64 vs. $85.85 average daily costs).

As she lay in her hospital bed about a month ago, 28-year-old stroke survivor Nicolette Perez (pictured with her mother) was asked how she felt about the prospect of living in a nursing home. She immediately and emphatically turned her thumb down -- the stroke had taken her ability to speak.

Her parents took her home instead. She's slowly relearning to talk and walk, although her voice is weak, her steps unsteady, and she falls a lot.

The government would pay for Perez to live in a nursing home.

But because of complicated quirks in state and federal law, the government won't pay for her to have an aide come to the house to help with routine daily tasks such as eating and bathing -- even though everyone involved agrees that would be cheaper for the government and better for Perez.

Federal Medicaid law considers nursing-home care an entitlement. Home- and community-based services are an option, subject to available state funding.

And in a tough budget year, with a rising number of people with disabilities to care for, Kansas can't afford to provide home services to newly disabled residents like Perez.

Before she had her stroke Oct. 29, Nicolette worked as a hatter, designing and making hats for a Wichita shop. The job didn't offer health insurance, so she wound up being covered by Medicaid.

The Medicaid- and state-funded program that pays for home and community care has been frozen since Dec. 1.

One possible solution could come from Vermont.

If Nicolette and her family lived there, the state would pay for home care -- with no pressure for her to go to a nursing home.

Vermont rewrote its laws and renegotiated its contracts with the federal government to give disabled people a choice between institutional care and home care.

In doing that, Vermont substantially cut the number of high-cost nursing-home days it pays for, freeing an estimated $80 million a year to expand home- and community-based services.

"It takes away what is called the 'institutional bias,' " said Joan Senecal, commissioner of the Vermont Department of Disability, Aging and Independent Living. "The goal was not to save money, but to serve more people with the same money. It's worked out very well."

When Vermont launched its "Choices for Care" experiment in October 2005, the state served 3,447 people. Today, it serves 5,041.

Assistance has been expanded to people with moderate disabilities who would not have qualified under the previous guidelines, similar to what Kansas has now.

Vermont had 241 "high needs" applicants on a waiting list for service in 2005. Now, it has 56.

A key feature of Vermont's program is that disabled people can choose to spend their aid allowances to pay a family member to stay home and take care of them.

A program like Vermont's would be a godsend for Nicolette and her family, said her mother, Alicia McCurry, who has become her chief caregiver and spokeswoman.

McCurry works as a nurse in a doctor's office. Her husband, Brad, is a rancher.

Each makes $35,000 to $40,000 a year; if one gave up a job to take care of Nicolette during the day, the family income would be sliced in half.

Alicia McCurry's day begins between 4:45 and 5 a.m. She has to get up that early to help Nicolette get ready.

Nicolette has to eat slowly and all her liquids have to be thickened to prevent choking.

Just about everything she does takes twice as long as it would for an able-bodied person. It's a quandary for her mother: The more she helps, the faster it goes -- but the less Nicolette gets the practice she needs.

On her way to work, McCurry drops Nicolette off at the home of her father, Philip Perez. He cares for his daughter during the day and drives her to therapy sessions, although he has also had a stroke and walks with a cane. If Nicolette falls, he needs help to get her back on her feet. McCurry picks up her daughter after she gets off work at 4:30 p.m.

After grocery shopping or other daily errands, it's time for dinner, then Nicolette's bath and bedtime at 9 p.m.

"Your day is basically gone before you know it," McCurry said. "It's very exhausting."

She sleeps lightly, against the worry that Nicolette might need help or fall during the night, which she has done.

Kansas lawmakers who have read a synopsis of Vermont's plan and its results say it might offer a road map.

"That's what happens when you let the free market work," said Rep. Peter DeGraaf, R-Mulvane. "You give people choices and it creates competition and people end up with better services and lower costs."

Sen. Dick Kelsey, R-Goddard, said he thinks the Vermont experiment might offer some help for Kansas.

"I definitely think it has to be looked at," he said. "They obviously have a model that might give us some guidance."

Medicaid spokeswoman Mary Kahn said Kansas could seek to change its service delivery by amending its existing program waiver or changing the overall state care plan.

Either option would require state legislation and would have to be approved by Medicaid, she said.

Kansas Social and Rehabilitation Services Secretary Don Jordan and Secretary on Aging Kathy Greenlee agreed that the key to more efficiency is to reduce nursing care and increase home and community care.

Costs vary, but on average, it costs $38,748 a year to care for someone in an institutional setting in Kansas; it costs $24,031 for home- or community-based care, according to a new joint report on long-term care by the SRS and Department on Aging.

Jordan and Greenlee said they will be looking at Vermont and other states for ideas.

For example, Greenlee said, Washington state has taken a "universal budget" approach, combining services for the physically disabled, the mentally disabled and the frail elderly under a single umbrella.

Kansas has emphasized moving the mentally disabled out of institutional care. Its efforts have earned a top 10 ranking among states, Jordan said.

Until recently, the program for people with physical disabilities has not gotten as much attention. The program for people with mental disabilities perennially has a waiting list for services. The program for people with physical disabilities didn't until last year, when an unexpected jump in enrollment forced the freeze on new participants.

The program grew from a monthly average of 6,500 recipients in 2007 to 7,300 last year. The budget bill that recently passed the Legislature included an additional $2 million for physical disability services.

But Jordan said he plans to keep the freeze in place for at least another month or so, until the state gets a handle on the 2010 budget and figures out the effects of the recently approved federal economic stimulus package.

The state also has signed up for "Money Follows the Person," a new multistate effort to move both physically and mentally disabled people from nursing homes back into the community.

Greenlee said if the bias toward institutional services were removed, she would expect to see more people opt to stay in their homes than seek nursing-home care.

But, she added, she doesn't see a major overhaul in how the state helps physically disabled and frail elderly people coming until the state can eliminate the waiting list for mentally disabled people.

Nicolette and her family are watching to see how it all shakes out.

Despite the difficulties, McCurry said she is committed to keeping her daughter at home.

"She's 28. She doesn't belong in a nursing home," she said. (Bf added by Media dis&dat).

While Nicolette lives at home, Medicaid will pay for access to the aggressive therapy she needs. If she went to a nursing home, it wouldn't.

Nursing homes do provide some therapy, but it's geared mainly toward helping elderly people stay flexible and active, McCurry said.

"What's going to happen if we put her in a nursing home and she loses function?" she said. "They wouldn't even have a remote idea of what to do in a nursing home."

McCurry said she's thankful that she is a nurse. But she worries about others in similar situations who don't have that background.

"If I wasn't a medical person, I'd have been petrified to bring her home," she said.

Until something happens with the funding, about all Nicolette and her family can do is hope.

"We don't know how far Nicolette will go right now," McCurry said. "We keep praying things are going to get better -- and they are."

Recent war amputees say they have no regrets

From AFP:

WASHINGTON — His military career came to a brutal halt when an improvised bomb on an Afghan road tore both of his legs off.

But like other American veterans being treated at Walter Reed Army Medical Center in Washington, Staff Sergeant Michael Downing said he has turned the page and is fiercely dedicated to relearning basic movement.

"I waited until my son was old enough to remember who I was if something really bad happened. He's almost nine years old," the 42-year-old tattooed sergeant told AFP in his small dimly-lit room, recalling how he volunteered to be deployed to Afghanistan's Logar province.

"I knew what I was getting into when I signed up. I did my job, I am done. I have no regret," said Downing, adding that he would probably retire from the army, like 80 percent of Walter Reed amputees.

Downing was wounded in September.

"We got hit by an IED (improvised explosive device).... It went off right underneath me, I was gunning" in an armored Humvee, Downing said, adding that he was thrown from the vehicle and landed 40 feet (12 meters) away.

The Taliban then attacked his detachment. "I did shoot with my pistol to try to make them duck a little bit," he said. "During the fight, a Navy corpsman was working on me the whole time we were getting shot at.... He put a tourniquet on what was left of my left leg and gave me morphine."

Since 2001, the US-led wars in Iraq and Afghanistan have killed nearly 5,000 US soldiers, but also wounded 30,000 others, including nearly 900 amputees, most of whom have been treated at Walter Reed, the country's largest military hospital.

"Everything you take for granted, getting out of bed, going to the bathroom, cooking a meal, they teach you how to do this with your handicap," said Downing, who was awarded a Purple Heart for his combat wounds.

"You have to learn how to walk again. The walking, I am getting there, it takes time," he added, noting his five hours of therapy per day. He also had 16 surgeries after shrapnel fractured his elbow, broke five ribs and cracked his vertebra.

After enlisting in the US Army in 1985, Downing served for several years before taking a 13-year break. He then volunteered again "specifically because of September 11," 2001 attacks on US soil, he said.

But he whispered to a civilian visitor planning to travel to Afghanistan: "You don't want to go, things are getting worse."

New US President Barack Obama has called Afghanistan the central front in the fight against terrorism, rather than Iraq, and has approved the deployment of 17,000 additional troops -- joining 38,000 US troops already there -- to take on Taliban insurgents.

Staff Sergeant Earl Granville, 25, (pictured) will also no longer return to combat. A veteran of Bosnia, Iraq and Afghanistan, he lost his left leg a year ago, close to the Afghanistan-Pakistan border.

In a corner of the large physical therapy center for amputees, between two weight machines, a dozen artificial limbs are lined up, fitted with brand-name sneakers.

Granville joined the army when he was 17 years old. "My motivation, honestly, was free college. Then 9/11 happened, and I really enjoyed the army so I stayed in."

His calf now replaced with a prosthesis, he says he is happy and was lucky.

"I was the team leader, so I sat in the passenger seat of the Humvee. And then, a major wanted my job, so he took my seat and I went for the gunner position. Then we hit an IED. I went unconscious. That major and the driver were killed," Granville explained.

"When it happened to me, I thought it was the end of the world. But when I came here, I saw people like me. It helps," he said, smiling, while a physical therapist was working with a young patient on the neighboring bed.

He went skiing in December.

"We really try to ensure that the latest technology is made available to our soldiers," said Lieutenant Colonel Paul Pasquina, a doctor and the head of Walter Reed's orthopedics and rehabilitation department.

"The guys who have lost their limbs are going to need care for the rest of their life. We need to be committed to provide that care for the rest of their lives."

Teen in Malta fights for disability rights

From The Times of Malta:

An 18-year-old girl is fighting for her right to access clothes shops, restaurants and cinemas with her wheelchair as she is determined to lead the same kind of life as any other teenager.

"Like others, I enjoy shopping and going out with friends. However, most of the time I end up disappointed when I realise I can't enter the premises because the only way in is by going up steps. I feel this lack of access is shameful and erodes my rights," Roberta Magri (pictured) said.

A few days ago she had to give up watching a film at the Eden Century cinemas in Paceville because it was being shown in a theatre that was not suitable for wheelchair users.

The experience was the last straw for the teenager. When she got home, disappointed and angered, she wrote a letter to the Prime Minister expressing her frustration in the name of all wheelchair users.

Ms Magri has had enough of going to stores or cafes and having to turn back or wait outside because there is no ramp or it is too steep. She is also tired of trying to manoeuvre her way through bumpy pavements that force her onto the road, often pitted with potholes.

She is asking the authorities to take the issue of accessibility seriously as it is turning the lives of wheelchair users into a hectic obstacle race.

Speaking at her home in Ibrag, Ms Magri said that before going to the cinema she had phoned and was assured that the film she wanted to watch was accessible to her - only to be disappointed when she turned up. She was told she would have to get up from the wheelchair if she wanted to see the film there and a staff member offered to help her out. When she asked to stay by the door, she was not allowed due to safety regulations.

Nine of Eden's 17 cinemas are not accessible to wheelchair users. The ones that are accessible are located in the new part of the complex, which was built after the Equal Opportunities Act came into force in 2000. But Ms Magri insisted: "Don't I have the right to watch a film in a cinema because I am in a wheelchair? Do I have to be constrained as to which films I choose?"

The young woman stressed she would not allow her disability to take over her
life.

"People often complain and don't do anything about it. I decided to try and do something, so I wrote this letter... I hope that it will not fall on deaf ears."

The chairman of the National Commission for People with a Disability, Joseph Camilleri, said the letter had been forwarded to him by the Prime Minister's office and the commission would be looking into Ms Magri's complaints.

The issue will be discussed during a meeting of the commission's legal unit tomorrow. However, he explained that buildings built before the Act came into force were not bound to ensure wheelchair access.

Mr Camilleri added that, according to an agreement with the Malta Environment and Planning Authority, the commission was to vet buildings "of major use" for accessibility.

However, he said, not all plans were forwarded to the commission for vetting. Also, due to a lack of resources, the commission was not always able to ensure that buildings were built according to the approved plan.

Ms Magri's cry to developers is to keep people like her in mind: "These occurrences can have a negative mental impact on an individual... Without wanting to, you feel different despite the fact that you try to lead a normal life," she said.

Texas mom advocates for accessible playground

From The Daily News in Galveston, Texas:

LEAGUE CITY, Texas — Doctors told her not to have too much hope for her 4-pound baby born with Down syndrome.

They said Christian Bennett would have a low IQ and that he would need “special attention,” his mother, Reneé Bennett-Farrow, said. Teachers tried to put her son in segregated classes, she said.

But when Bennett-Farrow looked at her son, she didn’t see Down syndrome. She saw a compassionate, curious, sometimes mischievous boy who was not getting the respect he deserved. So she vowed to change things.

“I wanted people ... to know him as Christian, not as a child with Down syndrome,” she said.She called the League City Parks Department and told its employees: “I want you to put my son on the cover of the parks directory.”

They did.

She got bolder. She said she pushed the parks department to initiate programs for people with disabilities but was told there was no money.

And then, one night, the idea struck her. As she was lying in bed, she heard a voice from God tell her to research playgrounds for people with disabilities, she said. At 4 a.m., she logged on to the Internet. There it was — the “Boundless Playground” (one is pictured) — a trademarked play area created by Amy Jaffe Barzach, whose son died from a terminal form of spinal muscular atrophy. The playground is modified to accommodate children with physical, developmental, cognitive and sensory disabilities.

There are only two such playgrounds in Texas, both in Dallas.The photos of children of all shapes and sizes playing together were exactly what Bennett-Farrow had been looking for, she said.

She took the idea straight to the head of the city’s parks department.

The parks department staff helped her pitch the idea to charitable organizations.

Then a city council member caught wind of the idea and, by January, council members gave the parks department the green light to develop the playground at League Park off Main Street.

A playground that could accommodate all children — including those in wheelchairs, those with autism and those with Down syndrome — would be a boon for a city home to more than 4,000 special needs children, said James Abbot, a League City pediatrician who treats Christian.

“A society is judged ultimately by how (people) care for their children and old people,” he said. “This (playground) is certainly one way we can assist in the development, growth and happiness of our children.”

When Bennett-Farrow talks about the need for a playground tailored for children with disabilities, she tells a story about one of her son’s classmates.

The story makes her sad every time she tells it, she said.

When Bennett-Farrow visited the school during recesses, she noticed a boy in a wheelchair sitting just outside the play area. The swings, slides and jungle gym couldn’t accommodate his wheelchair, so the boy sat quietly watching the other children play, she said.

Although Christian can play on the swings and the slide, the playground can still be a dangerous place for him. The 15-year-old is fearless and rarely acknowledges his limits, his mother said.

On a recent weekday, Bennett-Farrow turned around to find her son perched near the top of a 10-foot firefighters’ pole.

“Don’t do it, Christian,” his mother said sternly. “It’s dangerous.”“It’s fine — I can do it,” he retorted.

They quibbled, like mothers and teenage boys do, about the dangers of the drop.

“You’ll break your ankle,” Christian’s sister, Mandy Arvidson, tried to tell him. Unconvinced, Christian grasped the top of the pole, thrust his body forward and skidded down the pole. His mother sighed when his feet hit the ground.

That wouldn’t have happened in a playground with special equipment tailored to protect children like Christian who know no boundaries, she said.

Plans are under way to install the new playground in the center of town. Bennett-Farrow and a group of city staffers and other advocates for children with disabilities have formed a task force to find funding for the park.

Bennett-Farrow is brimming with ideas. She wants a play station with music and colors to intrigue children with autism, she said.

She wants ramps and bridges wide enough to accommodate two wheelchairs at once, she said.

And she wants to change the playground’s surface from gravel to a spongy material.

Christian, who has already flipped through stacks of playground equipment catalogs, has picked out what he said must be featured in the new playground. He wants swings — and lots of them — and slides that twist and bend, he said.

He summed up his thoughts to city council members in January when his mother handed him the microphone after she made her pitch.Christian is often unpredictable, his mother said, and she wasn’t sure exactly what he would say to council members.

He pulled the microphone close.

“I believe all children should be included on a playground,” he said. “Will you believe, too?”

New HHS chief faces big job, especially fixing recession-damaged Medicare

From The AP:

WASHINGTON — As President Barack Obama's health secretary, Kathleen Sebelius (pictured) immediately will face a host of difficult policy issues that touch the lives of every family.

Obama planned to introduce Sebelius, the Democrat governor of Kansas, on Monday as his nominee to lead the Health and Human Services Department. The announcement would come before the president this week hosts lawmakers of both parties and representatives of major interest groups, from insurers to drug companies to consumers, at a White House summit on health care reform.

If confirmed by the Senate, Sebelius will play a leading role in Obama's ambitious effort to overhaul the health care system. But critical problems await her at the department, a vast bureaucracy that handles everything from Medicare to cancer research and to food safety.

The recession has taken its toll on Medicare, which provides health care for older people and the disabled. Plunging tax revenues have weakened the program's giant hospital fund, accelerating its projected insolvency to as early as 2016, only five years after the first baby boomers start signing up for services.

The Food and Drug Administration, meantime, is reeling from a seemingly endless series of safety lapses.

Sebelius, 60, is seen as a steady hand, an experienced public official who knows how to work across political lines and is unfazed by the complexities of health care and insurance issues. But she represents Obama's backup plan.

Originally, the president had counted on former Senate Majority Leader Tom Daschle to shepherd his health overhaul agenda through Congress.

Daschle would have worn two hats: health secretary and head of a White House health reform office. He was on a first-name basis with most senators, where health care legislation faces its stiffest test.

Sebelius knows some of the key players, but will have to establish a working relationship with others. Obama plans to name a different person for the White House health care job, raising the prospect of tensions between that office and the health secretary's.

Prospects for Sebelius' confirmation appear to be good, although she faces sharp criticism from abortion opponents who clashed with her in Kansas. Kansas' two senators, both Republicans, offered words of praise.

"Obviously we will have different viewpoints than the administration on many issues including health care reform, especially given the huge price tag," said Sens. Pat Roberts and Sam Brownback. But despite "real concerns" about Obama's direction, they said they looked forward to being able to pick up the phone and talk directly with Sebelius about health care issues.

The health insurance industry and consumer groups have also responded favorably to Sebelius, a former state insurance commissioner.

Obama made his opening move on a health care overhaul last week with his speech to Congress and a budget that set aside $634 billion over 10 years as a down payment on coverage for all — a goal that could ultimately cost $1 trillion or more. Now Congress will have to take the initiative.

Obama outlined some general policies, such as putting the country on a path to cover all its citizens and preserving the employer role in providing health insurance. His budget also showed it will take tough choices on spending cuts and tax increases to pay for health care.

But it will be up to Congress to turn those ideas into workable legislation. Democratic Sens. Max Baucus of Montana, the Finance Committee chairman, and Edward Kennedy of Massachusetts, who leads the Health, Education, Labor and Pensions Committee, say they want to present legislation by the summer.

Before health care legislation gets moving, Sebelius' attention may well be diverted by problems at the department. The administration will have to move quickly to name an FDA commissioner, a decision delayed by the difficulty in filling the health secretary's job. A trustees' report due in the spring is expected to highlight the worsening condition of Medicare's finances.

HHS has some 65,000 employees and a budget of more than $700 billion a year. It oversees Medicare benefits as well as Medicaid, the federal-state program serving the poor. It also is a responsible for the nation's front-line scientific defenses against disease and bioterrorism, as well as for research into causes and cures for cancer and other illnesses.

Medicare is considered a foundation of the nation's $2.4 trillion health care system because many private insurance plans use its policies as a guide. It suffers from runaway costs and questionable quality, problems that plague the rest of the system. Some experts estimate that 30 percent or more of Medicare spending may be for services that provide little or no value to patients.

Obama wants to expand coverage while slowing the rate of increase in costs. Administration officials say they are hoping that in the end that will lead to a more affordable system, without the coverage gaps that leave an estimated 48 million people uninsured.

Club's sign language performances aim to educate audiences about the deaf community

The intro to a feature in the Clarion Ledger in Mississippi:

Even John Lennon may not have imagined this: A concert where no words are spoken, yet the lyrics are delivered with such power and beauty, they produce smiles and tears.

The artists are members of A Show of Hands, a club at the University of Southern Mississippi in which students interpret the words of well-known, recorded music through the use of American Sign Language.
"The first thing people think when they hear about us is that we perform for the deaf or the hearing impaired," says club director Jerry Buisson, an assistant professor in USM's Department of Speech and Hearing in Hattiesburg. "And we do, because they enjoy music, too.

"But our main focus is to build an understanding for hearing people toward deafness and sign language through entertainment and information.

"It's more than people just standing up there signing. It involves dance, in that the body is used to convey words and feelings. We lip sync and have costume changes. We even do audience participation."

And the music consists of everything from '60s classics such as My Girl and Wishin' and Hopin' to soundtrack hits like My Heart Will Go On from the movie Titanic.

Carol Gaines, 52, of Ocean Springs acknowledges she was leery when invited to A Show of Hands concert about a year ago.

"I knew nothing about sign language," she says. "But I absolutely fell in love with the show."

She invited two friends to go with her to the club's annual Christmas show.

"At first, they had the same question as me - what does this show have to do with a person with perfectly good hearing," Gaines says. "But they were amazed. One of them had tears running down her face during one song. She told me later that she had never been able to feel the song's true meaning the way she did that night.

"I know it sounds strange to someone who hasn't been to a show. But when you're watching it, it brings songs home ... it increases the depth of their meaning."

NC man with autism finds his voice through art

From the Shelby Star in N.C.:

Through his artwork, Scott Washington (pictured) has found his voice.

Scott, 21, was diagnosed at age 3 with mild autism, said his parents, Sylvester and Peggy Washington. He didn't talk and make eye contact like other children, and really didn't speak until age 5. Even now he has difficulty carrying on conversations with strangers.

"We really didn't notice that at first," Peggy said. "We just thought he was a really good baby."At the time of his diagnosis, autism was still relatively unheard of.

"Until middle school, he was in mainstream classes. Once he got to sixth grade, he began exceptional children's classes, just because the teachers didn't know what to expect. I think he was the first autistic kid to come through Burns Middle and maybe even the school system," Peggy said.

While social skills don't come easily, Scott's ability to draw and paint comes naturally.

"The first time we noticed it was a drawing of the Berenstein Bears mom," Sylvester said. "It was on thick paper, and at first I thought he'd traced it, until I noticed he couldn't have. I took to Peggy and said ‘Look at this.'

"When I saw the possibilities, I knew God gave him a voice through his paintings."

Scott's love of art is something his parents have tried to help grow. He took art in middle school and high school and is currently studying with Sally Jacobs at Cleveland Community College.

Scott likes to paint people and places, "Anything with shadows and light," Sylvester said. He paints both from photographs and from images in his mind.

Currently Scott's works are on display at Buffalo Creek Gallery in uptown Shelby. The exhibit will remain up through March 12.

"Scott entered Arts on the Square last year and won," said Ginger Spangler, a fellow painter and a member artist with Buffalo Creek. "Dianne Garner wanted him to be one of our visiting artists. I thought ‘I want to meet this
kid.'"

Other artists have taken an interest in Scott as well. Several visited with him at the opening reception for his exhibit.

Scott's artwork gives him a sense of self-sufficiency, his parents said, and raises awareness about autism.

"It will let other people know that children with autism do have a talent hidden inside," Peggy said.

Scott has another exhibit coming up March 14 at the Cleveland County Arts Council. His next project, Peggy said, is painting a portrait of the Obama family.

"We don't know how, but we're going to get it to him," she said.

British comedian, actress explains her CP just part of who she is

Comedian and Extras actress Francesca Martinez (pictured) writes about her CP in The Telegraph in the UK:

Last December, I guested on the topical news Radio 4 show Broadcasting House. One of the stories up for debate was David Cameron's Christmas card, which featured a photo of his family, including his young son Ivan, who had cerebral palsy. There was talk of the Tory leader using Ivan as a political tool to make him seem more caring and sympathetic.

I felt compelled to point out that Ivan was his son and therefore should be in a family photo. I imagined that had Mr Cameron left Ivan out of this family scene, he would have been chastised for keeping him invisible. He couldn't win. I thought the only fair question was whether any of his children should have appeared and if it was right of him to place them in the media spotlight. As usual, someone's disability had made them an issue first and a human being second.

That's the huge secret about disability – anyone with experience of it knows that a disabled person is just a person they love. A disability is like hair colour, eye colour, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.

I was born with mild cerebral palsy: according to my mother, if I was like a newborn foal. I like to think that this charming comparison is because of their wobbly legs and slim frame. I like to call myself… wobbly. I admit that the doctor did not use that word as he informed my parents of my condition when I was a somewhat floppy two-year-old in my mother's arms, but I can't stand those depressing terms that someone deemed appropriate to burden a human being with for the rest of their lives.

No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth.

My parents were young when I wobbled into their world, and full of love for their first child. After hospital negligence during my birth, I did not breathe for seven minutes, resulting in starvation of oxygen to the brain. After I was resuscitated, my mum said that the only sign that "something was up" was the repeated reflex tests that were done on me before I left.

When, aged two, I was finally diagnosed, my parents did not seem fazed by the revelation. Sometimes I've asked them if they were shocked or upset at my diagnosis, but all they say is: "You were Francesca and completely normal to us." This attitude shaped my childhood and allowed me to be happy and confident, totally unaware of difference.

At school, I was popular and naughty, a real tomboy who had her first boyfriend aged five. My brother came along and, to him, I really am normal, and when his friends asked him why his big sister "talked funny", he'd reply with a puzzled: "What do you mean?"

At secondary school I lost all my confidence and, for the first time, became aware of my difference. Getting a main part in the TV show Grange Hill was a dream come true. Yet, despite five happy years on it, I hit 18 feeling isolated and insecure.

Thankfully, my father Alex, who is a playwright and novelist, wrote a film script for me, as I was being offered so few acting parts. I loved it, except for the fact he'd made my character a stand-up comedian, the most terrifying job in the world. I dragged myself to a comedy workshop in the name of research and, 18 months later, was on stage at the Edinburgh Festival winning an award for best new comic.

That moment was 10 years ago. Stand-up comedy has changed my life. Standing on stage and being honest about who I am allowed me to embrace my so-called imperfections and, amazingly, allowed the audience to get past any initial fears or nerves and see me as a person. Humour is a great way to challenge attitudes on difference and normality.

Being a wobbly comedian has meant I've had extra press and attention, but I've also come up against fear and prejudice. In 2002, the Perrier judges were told not to come and see my Edinburgh show because I was just a "novelty act", a BBC TV stand-up show would not book me because they thought I would make the audience "nervous",and I wasn't allowed on a BBC radio show because of my "funny" voice! Luckily I've been supported by other comedians such as Frank Skinner and Ricky Gervais, who have either given me parts or had me on their shows.

The media does not represent society truthfully and keeps "difference" largely invisible, and this means it is not seen as a normal part of life. Anyone can become disabled - the fact is, we will always be people first, with things we can and can't do second. I think everyone in life has their own "disability" - something that challenges them - whether it is visible or not.