Disabled Western Michigan University student DJ's, paints murals, finishes college using mouth stick

From The Kalamazoo Gazette:

KALAMAZOO, Mich. — Rynita McGuire (pictured) puts a new spin on the word “mouthy” as she mixes turntables and paints murals.

The 34-year-old, Kalamazoo-native completed a college degree entirely with her lips and teeth. She will receive her bachelor’s degree in painting from Western Michigan University on Saturday and every piece of art she’s created — whether it be on canvas, in headphones or on a computer screen — was made with her mouth.

McGuire was born with arthrogryposis, a condition that affects the tendons resulting in underdeveloped muscles, and has used a wheelchair for essentially her entire life. She orders straw-like devices called mouth sticks online for about $70 a pop and uses them to DJ and make graphic designs.

“I’m not paralyzed. I can use my hands but I have much more control with my mouth,” she said. “I lived my life like this. It’s not hard. If you push yourself all the time, things become natural.”

She said she has been using her mouth to do most things since she was a kid, so it was a no-brainer for her to grab a wooden spoon the first time she encountered DJ-mixing tables about a decade ago. Six months later, she was invited to perform at the Detroit Electronic Music Festival in 2002 and would continue to tour the country under the name DJ Short-e. She was one of three female artists asked to perform at the electronic music event, which is a male-dominated field, according to McGuire.

McGuire fell in love with art when she picked up a crayon, but didn’t seriously pursue it until college. She attended classes for graphic design and painting on and off at Kalamazoo Valley Community College but she wanted to get her bachelor’s degree. In 2009, she chose to focus on school at WMU because being a student and a traveling DJ was hard to multi-task.

“I think painting with my mouth was harder than learning to DJ,” she said. “Finishing school on my own was really intense. I didn’t think I was going make it a few times. Western can be a big scary place, even for me, and I’m not intimidated by a lot. I’m really proud I made it.”

McGuire’s independence is innate, according to her mother, Elizabeth Schmidt, of Kalamazoo.

“She doesn’t feel like she is handicapped. It’s the people who are doing nothing and have use of their arms who are handicapped,” Schmidt said. “She is able to pick herself up and keep going despite some really hard obstacles and it’s not like anything has been given to her. She’s done it on her own, even school.”

McGuire receives some state funding for her disability and was eligible for student services, but said it was more efficient to do her homework alone. She’s a project manager, has worked for WMU’s RSO Designs throughout college and lives on her own with two dogs.

McGuire suspects being older than her peers and in a wheelchair kept many of her classmates from getting to know her, but the fight to be acknowledged for her talents rather than disabilities is not a new one.

“Getting people to understand that I can do anything they can do and not to treat me like a kid is the challenge,” she said. “A lot of people treated me like I was a project. New people sometimes talk to me with high-pitch, slow voices or they ask my friends questions about me, but I don’t sit around and feel sorry for myself.”

She said she refused to DJ live until she spent thousands of hours practicing.

“I didn’t want people to think I was good for a girl in a wheelchair, I wanted people to think I was good.”

Even though she started drawing pictures and mixing cassettes for friends at 6 years old, she ignored encouragement to pursue art as a career until she attended college.

“I started out as a psychology major at WMU because I wanted people to take me seriously intellectually,” McGuire said. “I was dismissing a talent I had because I wanted to prove something.”

She’s since realized she can be taken seriously as a painter and musician because she is both of those.

After her educational sabbatical, DJ Short-E returned to the stage at Old Dog Tavern last month. It was the first time any of her peers heard her perform. Within minutes, the dance floor was filled as DJ Short-e pumped her neck to spit out beats.

McGuire is working to gather local painters and DJs in February for a graduation thesis paint show and is already booking shows in Michigan.

She hopes to either find a job teaching art or start her own graphic design firm in Kalamazoo.

“She’s inspired a lot of people and she has a long way to go; she’s young,” said Schmidt.

Florida charter schools failing to serve students with disabilities

from StateImpact Florida:

Tres Whitlock (pictured) is stuck in a public school where he feels ignored. He wants out.

The 17-year-old would-be video game designer researched his options online and found his perfect match – Pivot Charter School.

“It’s computer-based and I think I will do better,” he says.

But when Whitlock tried to enroll the school he found a series of barriers in his way.

The reason? He has cerebral palsy, and the Whitlocks say school officials told them they don’t have anyone to take Whitlock to the bathroom.

Whitlock and his parents are convinced their story isn’t unique – and enrollment data backs them.

A StateImpact Florida/Miami Herald investigation shows most charter schools in Florida are failing to serve students with severe disabilities.

Statewide, 86 percent of charter schools do not have any students classified as severely disabled.

That’s despite state and federal laws that require charter schools to give equal access to these students.

Tres Whitlock’s father, Maurice, says the family tried to alleviate Pivot’s concerns. The family even offered to pay for physical and occupational therapy. Maurice Whitlock still feels burned by the experience.

“It’s not negative or rude, but every angle was trying to find a different way to say ‘no’ every single time we were in that office,” he said. “They were politely trying to say they didn’t want him there. Because that’s the easy way.”

Pivot principal Carmela David declined to talk about Tres Whitlock. She says her school has never turned away a student because they’re disabled.

“That has never happened,” she said.

Whitlock is still trying to get into Pivot. In the meantime, he’s been placed in a public school classroom that serves mainly students with mental disabilities.

It’s a doubly-bad situation for Whitlock. He doesn’t feel mentally challenged. But he’s also being ignored because he’s isn’t able to raise his hand quickly enough to be noticed.

Whitlock can’t control his vocal chords, so he communicates by typing his words into the DynaVox tablet that serves as his voice.

When he’s asked about Pivot, his eyes widen and he smiles. With a twisted hand, he painstakingly types out his answer.

The mechanical voice of the DynaVox can’t mask his emotion.

“I have very few friends,” Whitlock said. “I still want to go to Pivot.”
“They Cost Too Much”

Charter schools first developed as an alternative for parents unhappy with their neighborhood school. They are publicly-funded but privately-run. Charter schools are given the flexibility to try new ideas and hire the staff they want.

According to state law, every student is supposed to have an equal shot at enrollment – including students with disabilities. But students with severe disabilities are not appearing in most charter school classrooms.

StateImpact Florida and the Miami Herald gathered and analyzed data on K-12 students with disabilities from 14 school districts representing more than three-quarters of Florida’s total charter enrollment.

The analysis focused on students in the state’s two most severe disability categories, which includes some students with autism, Down syndrome, and cerebral palsy. It shows:

• More than 86 percent of the charter schools do not serve a single child with a severe disability – compared to more than half of district schools which do.

• In Duval County, just one student enrolled in a charter school has a severe disability. Duval district schools educate more than 1,000 severely-disabled students.

• There’s not a single child with a severe disability in charter schools in Pinellas County, the nation’s 24th-largest school district.

• The majority of charter school students with severe disabilities are concentrated in a handful of schools that specialize in those disabilities, often autism.

The Florida Department of Education, citing privacy concerns, declined to provide detailed statewide data of students with severe disabilities. But the agency said their analysis shows 86 percent of charter schools statewide had no students with severe disabilities.

It’s a trend repeated in California, Louisiana, New York and Texas, according to researchers from the Bill and Melinda Gates Foundation.

Harvard University researcher Thomas Hehir calls it a “pattern of exclusion” among charter schools nationally. Hehir was the top special education official during the Clinton Administration and played a leading role in rewriting the Individuals with Disabilities Education Act.

He says it comes down to money.

“That is unfortunately what we find in altogether too many places,” Hehir said. “I think that there is a disincentive to enroll these kids because they cost more money to educate.”

In Miami-Dade schools, for instance, state funding covers only 58 percent of the total cost of educating students with disabilities. The schools have to make up the difference.
The Loophole

This goes to the heart of the debate over charter schools. Opponents, especially teacher unions, argue that charter schools cherry pick students.

That’s something the CEO of one of the nation’s largest for-profit charter school chains flatly denied in a May interview with the St. Petersburg Times.

“We don’t cream kids,” said Jonathan Hage of Charter Schools USA. “It’s just not factually correct to say charter schools cream schools or take the best.”

“By the law we must have an open enrollment process. Anyone can apply. And the process when we have more applicants than seats is a lottery without preferences,” he said.

But for students with disabilities, there’s a loophole. Where special education students attend school is determined by their Individual Education Plan (IEP). That plan is developed by the student, parents and therapists.

The IEP team won’t send that student to a charter school that isn’t set up to serve disabled students.

Tres Whitlock.

It’s a catch-22, according to Paul O’Neill. He’s an expert in special education at Columbia University.

“When (students) get an IEP, it’s now a mandate, it’s a responsibility,” he said. “You’re not allowed to be any place that can’t implement that IEP. That isn’t an appropriate placement.”

Even in the traditional public schools, not every school is expected to provide every service. About half don’t serve a single child with a severe disability. Instead, they’re sent to neighboring schools with specialized programs.

“The reason that there are a larger percentage of charter schools without (severely disabled) students is that charter schools do not have the infrastructure and economies of scale to provide special programs to meet the needs of those children,” said Michael Kooi, director of school choice programs at the Florida Department of Education.

Kooi says school districts are supposed to design an overall plan to educate students with disabilities and avoid duplicating services.

“Charters as individual entities do not have this ability,” Kooi said.

Families of students with disabilities have another option if they are unhappy with public schools: The McKay Scholarship.

The McKay Scholarship provides tuition vouchers for students with disabilities to attend private schools. Students with disabilities who want out of their traditional public school may be opting for private school instead of charters.

About 22,000 students were enrolled in the program last year. McKay scholarships comprised as much as 10 percent of all students with disabilities, in districts which provided the data to StateImpact Florida.
Segregation?

Charter school officials said they recognize the problem and are working to correct it.

Lynn Norman-Teck, spokeswoman for the Florida Consortium of Public Charter Schools, said students with disabilities will become more of a priority as the charter school movement matures.

“I imagine that the children with disabilities will be next,” Norman-Teck said. “Unfortunately, just like they were an afterthought in the traditional public schools – not necessarily and afterthought, but it came with time. I think that will happen in time.

Hage, the charter school CEO, points to one possible solution: entire charter schools that specialize in serving kids with disabilities.

“We’re serving more and more students with special needs,” Hage said. “In fact, you’ll see more charter schools opening up for kids with autism, kids with severe disabilities.”

Orange County has a network of such charter schools. More than twice as many disabled students attend Orange County charters as any other county.

In fact, when you factor out charter schools specializing in students with disabilities, charter schools enroll even fewer students with severe disabilities. These non-specialized charters enroll disabled students at a rate seven times lower than district schools.

Those specialty charter schools are available only in the state’s largest counties. And even if a county does have a charter specializing in disabilities, it may be far away from the student.

Harvard University’s Hehir has another name for this trend: segregation. He says it violates the students’ civil rights.

“If we had similar patterns of exclusion of kids by gender or race, I think there would be much more outrage then there is on the part of government and on the part of people,” he said.
Not an Option

Tres Whitlock’s mother, Tonya Whitlock, says Pivot may be allowed to deny her son entrance. But she says it certainly is not fair.

“If federal funding is going to fund these charter schools then they should be equal,” she said. “They should have equal opportunity for every student to be able to get an education at that school.”

They believe Pivot would be better for Tres Whitlock in a number of ways. Pivot offers half-day classes, which deals with Whitlock’s physical fatigue.

One more example: Whitlock won’t have to raise his hand to get his teacher’s attention. At Pivot, he can just signal his interest through his computer.

When they met with school officials in August, Pivot asked for testing and wanted to discuss Tres’ education plan, Tonya Whitlock said.

The Whitlocks were willing to pay for some services themselves if it meant Tres could attend Pivot.

They tried to schedule a meeting between school officials and Whitlock’s special education team, the group that develops and implements his federally-required Individual Education Plan.

As the start of classes approached, the Whitlocks said Pivot school officials were slow to respond about to their meeting request. They decided to enroll Tres in a district school rather than miss school.

Whitlock was given the option to attend a nearby school with a program for students with physical disabilities.

But his younger brother went to their neighborhood school, Bloomingdale High. So he ended up in Bloomingdale’s program for students with autism.

They’re still aiming to get into Pivot.

Carmela David, Pivot’s principal, declined to discuss Whitlock’s specific case.

She says Pivot must work with Hillsborough County special education experts to determine if the school is the best fit. The decision belongs to the district, she said.

“Sometimes it’s not up to us,” David said. “We don’t always get to say ‘Yes, you can come;’ ‘No, you can’t come.’”

Pivot does not have any students classified in the state’s two most severe disability categories, according to Hillsborough County school records.

Tonya Whitlock feels her son is getting left behind in the meantime.

“They kind of get put in the corner and forgotten about in the public schools,” she said.

The Whitlocks are not happy with their choices.

Charter schools were designed for students seeking innovative methods and materials. They’re supposed to be an option for students and families who feel the traditional schools are not meeting their needs.

But Tonya Whitlock says it may not be an option for them.

“When you have a child with a disability, they tell you where you’re going to go, basically, and that’s it,” Tonya Whitlock said. “They are segregated… and you’re not allowed to go beyond those boundaries. So really we don’t have choices.”

In NY city, accessible cabs for disabled people or Gov. Cuomo says he will veto livery cab bill

From the NY Daily News:

ALBANY, N.Y. — Gov. Cuomo will veto a bill to allow livery cabs to pick up street hails unless it is amended to require that every medallion in a new batch of yellow cabs be specifically for taxis accessible to the disabled, the Daily News has learned.

The bill — passed in June and backed by Mayor Bloomberg — would permit the 30,000 livery cars in the city to pick up passengers on the street, as opposed to just serving customers who call ahead for a ride.

The bill also calls for the Taxi and Limousine Commission to sell up to 1,500 new yellow cab medallions, with 569 of those cabs being accessible to disabled riders.

Cuomo has previously raised concerns about the need for more cabs accessible to the disabled, but the development is the first word that the governor is pushing an all-or-nothing position in talks with lawmakers, sources said.

There are currently 231 city cabs that are equipped to handle disabled passengers. In a civil court filing in October, Manhattan U.S. Attorney Preet Bharara’s office charged that the city is nowhere near complying with the federal Americans With Disabilities Act when it comes to taxis for the disabled.

Cuomo and legislative leaders are still hashing out other changes to the bill, which, if approved, could mean $1 billion in new revenue for the cash-strapped city, the sources said.

A legislative source said there shouldn’t be a problem meeting the governor’s demand. The source said a tentative deal is in place to increase the number of new yellow cab medallions to 2,000, with all of them being for cabs accessible to the disabled.

“I think we’ve gotten to the point where everyone agrees that all new yellow cab medallions be wheelchair accessible,” said Assemblyman Micah Kellner, a Manhattan Democrat who has pushed a bill for widespread accessibility.

There is also talk of significantly scaling back the number of livery cars. One legislative source said that power brokers are currently discussing a proposal to cut the number of livery-car permits to 17,000, with 2,000 of them being accessible to the disabled.

Bloomberg spokesman Mark Botnick wouldn’t discuss specifics of the talks, but said, “We are working collaboratively with the governor and the Legislature to reach a positive resolution.”

Clothing line, Downs Designs, creates T-shirts & jeans to meet needs of people with Down syndrome

From CNN:

Karen Bowersox doesn’t sleep much these days. Launching any self-funded clothing line would be exhausting enough, but Bowersox’s company, Downs Designs, created an entirely different system of sizing.

Its T-shirts and jeans meet the needs of people with Down syndrome.

“If I didn’t feel so sure of where we’re headed, I would never do this and risk what we have,” Bowersox said from a hotel room in Xintang, China, where she had been working with a jeans manufacturer. “I feel like a pit bull, because people better step aside and just let me get this job done.”

Bowersox created her company in 2010 to deal with a mundane yet agonizing problem – off-the-rack clothing would not fit her granddaughter, Maggie, who has Down syndrome.

Down syndrome’s best-known symptoms are those of intellectual impairment and facial differences – eyes that slant upwards, small mouths, and small, flat noses. But individuals with Down syndrome also have physical traits that make it difficult to find clothing that fits appropriately.

The condition is associated with poor muscle tone, which can make some body parts, like bellies, seem droopy. People with Down syndrome also tend to have thicker limbs, a short, thick neck, and short stature. Their knees and elbows are at slightly different points on their legs and arms. An underactive thyroid is common, and that can cause weight gain. Additionally, many children and adults with Down syndrome are sensitive to tight or restrictive clothing, especially around the waist or neckline.

This can make wearing ordinary clothes uncomfortable, and there are safety risks in tripping over pant legs that are too long or that don’t bend properly at the knee.

Bowersox said most people underestimate the effect that having badly-fitting clothes can have on the perception – and self-esteem – of a person with Down syndrome.

“Their entire life, this is one of their biggest challenges, and people do not know that,” Bowersox said. “They are forced to wear ill-fitting clothes that make their difference look even more pronounced. When they put on a shirt that fits, it takes away that difference.”

Julie Cevallos, vice president of marketing at the National Down Syndrome Society, said she’s been following the company’s progress on Facebook. Her 3-year-old daughter has Down syndrome, and her favorite outfits are stretchy leggings and loose tunics forgiving to most body types. But she said she’s glad to see Bowersox’s company taking the initiative.

“It seems like she is really filling a need that I haven’t seen anyone else filling, so I think it’s great,” Cevallos said.

Downs Designs now sells a line of women’s long-sleeved T-shirts and four styles of women’s jeans. Children's jeans and T-shirts are going into production. The company’s designers have drawn up designs for long- and short-sleeved t-shirts, blouses, khakis, jeans and coordinates for toddlers, kids, teens and adults. Bowersox said they hope to have the men’s jeans ready to sell by February, and hopes to introduce other items, especially khakis, in 2012.

The shop is starting to attract devoted customers.

"I've been getting lots of orders for the women's jeans. I just had a woman order her fifth pair. She loves them," Bowersox said. "It brings me to my knees, when someone feels good about how they look."

Bowersox's devotion to that idea is why she keeps going, despite exhaustion, mangled pattern samples, and setback after setback. She's using her house and husband's business as collateral for money that keeps the business running.

“I can’t accomplish this fast enough. I want a complete line in my lifetime. I want suits. I want prom dresses,” Bowersox said. “They just want to look like every other kid.”

Merge Paralympics with Olympics, say 65% of disabled Britons

From The Express in the UK:

Almost two-thirds of disabled people want the Paralympics scrapped and merged with the Olympics, a survey has shown.

Support for such a move is backed by 65% of disabled people and 62% of parents of disabled children, according to a poll for the charity Scope.

More than half of all Britons polled, including those without disabilities, said combining the Olympics and Paralympics would help disabled athletes to be taken more seriously and improve society's views about disabled people.

The poll, carried out by ComRes, also found that 42% of disabled people did not believe the Paralympics had a positive impact on public perceptions of disability.

And 20% believe the Games make disabled people appear second class, while 22% believe the event is patronising towards them.

Although 61% of the 386 disabled people polled think the Paralympics provide an opportunity, just 23% see it as empowering.

Disabled people were also more likely to view the Games as a waste of money, with 9% taking that view as opposed to 5% of the whole population.

The survey also found general apathy about the Games, with just 11% of Britons excited about the Paralympics.

Under a third of disabled people and 18% of the whole population plan to watch all or most of the events.

Alice Maynard, chairwoman of Scope, said: "Changing attitudes is about visibility and increased familiarity in everyday life.

"But if the only disabled people that get any profile out of the Games are Paralympians – and their feats of sporting success – then it is unlikely that the Games will do much to change people's perceptions of ordinary disabled people.

"The challenge for London 2012 is to make sure disabled people are involved not just on track and field but throughout the Games and the celebrations before and afterwards."

Tim Hollingsworth, chief executive officer of the British Paralympic Association, said: "No one disputes that the Paralympic Games has a crucial role to play in changing perceptions of disability.

"However, for Scope to suggest that it would be appropriate to scrap the competition now and combine it with the Olympics fails to appreciate its unique purpose, scale and power.

"The Paralympics is already the second largest sporting event in the world, and London will see it take another huge leap forward in terms of awareness and understanding.

"The brilliant success of ticket sales and the increase in media coverage indicates to me that, contrary to the survey's sample, there is a big public appetite for Paralympic sport."

NY city homeless woman finds refuge in art, creates comic book about her Asperger's

From The NY Times:

Leironica Hawkins recalls always having “social problems, sensory issues and bouts of depression,” while growing up in Crown Heights, Brooklyn, as well as behavioral tics like self-rocking and involuntary hand twitches. Finally, at age 28, she was given a diagnosis: Asperger’s syndrome, a form of autism, for which she has never received treatment.

After many years of family turmoil, short-lived jobs and psychiatric difficulties, Ms. Hawkins was released by a hospital nine months ago to a Lower East Side shelter, where homeless people with handicaps live four to a room.

The yelling, the perfumes and air fresheners, the byzantine regulations: it all led to her feeling trapped and anxious. So she adopted a daily routine of leaving early in the morning and returning for the 10 p.m. curfew. She spends her days walking the cacophonous corridors of Manhattan, and has grown adept at finding its nodes of serenity.

She takes refuge in museums — especially the Metropolitan Museum of Art — libraries, art galleries and “anywhere I can go for free that will calm me down,” she said. She wears ear plugs, avoids rush hours and passes up crowded trains. In recent months, she has used public library computers to research Asperger’s and to browse listings for jobs and rented rooms.

After a systematic search of many New York Public Library branches, she found the Grand Central branch, on 46th Street between Lexington and Third Avenues, to be the quietest. But three months ago, panic set in: She noticed a sign in the library soliciting artwork for display in the library.

Ms. Hawkins had always found escape in drawing comics. And she had talent. An eighth-grade teacher made one of her cartoons into T-shirts for the whole class. She got into Art and Design High School and then briefly attended Pratt Institute. As an adult, she did fewer drawings after she smuggled her portfolio into a comics convention and pushed it into the hands of the legendary Stan Lee. He never called.

But now there was this sign, and opportunity was calling. Several panic attacks later, she resolved to create a comic book about her condition, and to submit it to the library branch.

At night, she took to slipping out of her shelter bed and locking herself in the shower. Sitting on the shower floor, she taped her sketch-paper to the tile walls, put her headphones on, and worked for hours. She ignored the knocks on the door, and sometimes redrew the same picture 10 times — a repetitive behavior typical of Asperger’s.

“I was feeling trapped and the creativity helped bring me a lot of confidence,” Ms. Hawkins said. “It was a way for me to say I’m eligible for something.”

“This wasn’t just a comic — it was a journey,” she said. “It changed me as a person.”

She emerged last month with a 22-page comic book, “Asperger’s Syndrome: An Invisible Disability,” which caught the fancy of the branch manager, Jyna Scheeren. The comic went up on the walls, where it will be on display until Dec. 30.

“It represents what the library is about,” Ms. Scheeren said, “lifelong learning and bringing different people together. I’d love to see it as a book.”

The comedic story line acts as something of a primer on the condition, with three teenage characters with Asperger’s, including the autobiographical Andrea, a klutz who has problems multi-tasking and following the boss’s directions. She cannot hold a job and at one point throws a furious tantrum and punches holes in a door, and then loses her job and her apartment.

Many drawings and story elements are based on Ms. Hawkins’s life, including a scene from a nightmare of a job at a Brooklyn Heights cafe.

For research, she sketched and photographed people and places to use as models for the comic. She forced herself past her panic and approached strangers.

The juggler in Union Square taught her some skills and became the inspiration for the scene in which Andrea is seen juggling impossible tasks at work. The cute clarinetist in the fedora near Union Square became a main character, as did the teenagers in the St. Marks Place pizza shop. A man in an art store gave Ms. Hawkins a discount upon hearing about her project.

“I had to get past my fears of approaching people, but the New Yorkers I met were open and friendly and their energy helped me along,” she said on Wednesday as she walked along rainy, crowded Lexington Avenue. She stepped into a coffee shop but could not decide what to order. Back on the street, she winced as an ambulance screamed by. It was raining hard, but she had seven hours to kill before curfew.

“I guess I’ll go up to the Metropolitan Museum of Art,” she said, and disappeared into the crowd in the rain.

In rural America, suicides follow Medicaid cuts

From The AP. In the picture, an unidentified woman is wheeled out of the emergency tent to be taken to hospital, at the Remote Area Medical (RAM) clinic in Wise, Virginia. Rural families, most with little or no insurance, lined up for hours to receive free health care from hundreds of doctors, nurses, dentists, and other health workers.

Suicide is on the increase in rural America--nowhere so much as in western mountain states like Idaho, Wyoming and New Mexico. Mental health professionals attribute it in part to cutbacks in Medicaid funding, to the recession and to the culture of the rural West.

In Idaho, somebody kills himself every 35 hours, according to a 2009 report to Idaho's governor by the state's Council on Suicide Prevention. Their report calls suicide "a major public health issue" having a "devastating effect" on Idaho's families, churches, businesses and even schools: 65 students aged 10 and 18 killed themselves in a recent five-year period.

Last week a county sheriff in Bonneville told the Idaho Falls Post Register that his department was getting more suicide calls than in 2010—a year in which 290 Idahoans took their own lives. "We're in a spike right now," he says.

Historically the suicide rate in rural states has been higher than in urban ones. According to the most recent national data available, Alaska has the highest rate, at 24.6 suicides per 100,000 people. Next comes Wyoming (23.3), followed by New Mexico (21.1), Montana (21.0) and Nevada (20.2). Idaho ranks 6th, at 16.5. Suicide is the second-leading cause of death for Idahoans aged 15-34. Only accidents rank higher.

Kathie Garrett, co-chairman of the Idaho Council on Suicide Prevention, says the problem has gotten only worse since the recession. "The poor economy and unemployment—those put a lot of stress on people's lives," she explains. To save money, people skip doctor visits and cut back on taking prescribed medications. Cuts in Medicaid have reduced the services available to the mentally ill.

"I personally know people who lost Medicaid who've attempted suicide," says Garrett.

Reductions in funding have led to the closing of mental health offices, she says. Such closings mean more in Idaho than they would, say, in Manhattan, where a therapist can be found on every block. Before the cuts and closings, somebody in Idaho seeking therapy might have had to drive 160 miles to find it.

Kim Kane, executive director of Idaho's Suicide Prevention Action Network in Idaho says other factors explain the high rate of suicide in western mountain states. One is the greater prevalence of guns: In 2010, 63 percent of Idaho suicides involved a firearm, compared with the national average of 50 percent.

She and Garrett also say the West's pride in rugged individualism can prevent people from seeking help. Their feeling, says Kane, is that they ought to be able to pull themselves up by their mental bootstraps. Idaho is the only state not to have a suicide-prevention hotline.

Garret, who has served in the Idaho legislature, complains state policy-makers don't all view mental illness as an illness—one on a par, say, with glaucoma or pancreatitis. Their belief, she says, is that a person suffering depression ought to be able to get help from church or family, rather than from state-provided professionals. "I told them," she says of her fellow legislators, "that when I had cancer, what I needed was a doctor. My family gave me support. My church gave me faith. But I still needed a surgeon."

Dave Strong, an assessment and referral coordinator for the Eastern Idaho Regional Medical Center, says the people now most at risk, ironically, are not the most severely ill. "Schizophrenics, once they've been diagnosed and qualified by Medicaid, don't fall out of treatment," he says." They're always able to get services."

Rather, it's people suffering the first onset of their disease who have the hardest time getting treatment. With services reduced, the mildly depressed now have to wait until their condition has reached a crisis stage to before they can get medical attention.

"We wait too long now to get treatment to them," said Garrett. "It's like telling somebody with diabetes that he'll have to wait until he's in a coma." People with mental illness, she says, can and do recover. "There's a 60 to 80 percent chance they will. But it takes time. The meds are very tricky: it's not a case of one-size-fits-all." Given that seven years can pass between diagnosis and getting a successful treatment going, it's important, she says, to start early.

It's important, too, "to remind the people reading this that there is always hope. All that anybody feeling suicidal has to do to get help is call the national hotline number. Dial 800-273-TALK (8255)."

Blind woman becomes lawyer after winning injunction against Bar Examiners

From WUSA-TV in DC:

WASHINGTON -- A blind woman was sworn in to the DC bar Dec. 5 to become a lawyer, marking the end of an 8-year battle with bar examiners in two states to allow her and other blind candidates to use adaptive software of their choosing to take the test.

Even so, the National Conference of Bar Examiners continues to resist allowing blind candidates to take the bar exam on the terms of the blind individual.

Cathryn Bonnette (pictured) has sued the NCBE in California and in DC during her quest to take the bar exam with the help of adaptive software that is used by hundreds of thousands of blind people nationwide. The software translates text in electronic documents into speech that the blind user can hear and respond to.

Judges in 3 states and the District have issued injunctions in favor of students, but the NCBE argues that the judges have overstepped their authority because the organization offers other accommodations for blind candidates, such as in-person oral and braille exams.

In a court brief, the NCBE cites "legitimate cost, security and other programmatic concerns."

Bonnette says the NCBE should stop resisting. "You graduate law school. You've done well, and all of a sudden to take that licensing exam you can't get the software you need."

After winning an injunction in DC, Bonnette passed the bar exam in July using the translational software she is comfortable with.

After her swearing in as a lawyer, Bonnette said she plans to advocate for other disabled people in battles for access.

Law students in Maryland have so far been unable to force the NCBE to allow the software on that state's bar exam.

"They're forcing us to fight a state-by-state battle Bonnette complained.

13 African countries come together to draft constitution for new organization, African Youth with Disabilities Network

By Kimberly O'Haver for the Open Society Institute blog:

In a lodge outside Nairobi, Kenya, 40 enthusiastic and bright young people with disabilities from 13 African countries came together last week to draft a constitution for a new organization they are forming, called the African Youth with Disabilities Network.

Among wheelchair users, sign language interpreters, and young people using various walking aides and other accommodations was 23-year-old student Seray Bangura from Sierra Leone (pictured), a country rebuilding after a devastating civil war. Seray is a coordinator for a disability advocacy group called Young Voices, a project of the UK-based Leonard Cheshire Disability charity. He is also in his final year of study at the Institute of Public Administration and Management in Freetown.

Seray is a member of the steering committee of the network, which was formed in May 2011 in response to a growing movement of young people with disabilities in Africa. Last week’s gathering kicked off with participants updating the group on progress made and challenges encountered in their home countries since they first met in May.

Seray noted some successes in Sierra Leone over past six months, achieved with the help of Young Voices, including the appointment of a young person with a disability to Sierra Leone’s National Youth Commission; regular radio talk shows focusing on disability issues and the UN Convention on the Rights of Persons with Disabilities; the creation of films about accessibility, education, and nondiscrimination; and the development of a university grant program for all students with disabilities.

Seray also noted, however, that the fight for disability rights in Sierra Leone is far from over. The country is ranked 148 out of 169 countries on the UN Human Development Index, and conservative estimates suggest that disabled people make up at least 10 percent of the population in the post-conflict nation. He lamented the lack of funding for disability issues in his country, and the fact that society still harbors negative perceptions of persons with disabilities. He also noted that implementation of the UNCRPD, which allows people with disabilities to fully realize their rights, is painfully slow.

Young people with disabilities in Africa continue to face enormous challenges. The meetings have allowed young people like Seray to gain new skills and learn about the process of creating a formal secretariat and establishing and managing a new, regionally, youth-focused disabled persons’ organization. Seray, along with others at the meeting, will continue their work to increase empowerment, mobilization, and coordination among disabled youth across Africa.

Both meetings were organized and hosted by the Open Society Initiative for Eastern Africa, the Open Society Disability Rights Initiative, and the Youth Initiative.

Assisted suicide -- Canada revisits an old debate via woman with ALS

From The AP:

VANCOUVER, British Columbia, Canada — Confined to a wheelchair, in constant pain and unable to bathe without help, a 63-year-old grandmother has forced the issue of assisted suicide into Canadian courts for the third time in two decades.

Gloria Taylor (pictured) has Lou Gehrig's disease, a rapidly progressive, invariably fatal neurological affliction.

"It is my life and my body and it should be my choice as to when and how I die," she said before going to the British Columbia Supreme Court last Thursday to challenge Canada's ban on assisted suicide, a crime carrying a sentence of up to 14 years in prison.

It has been nearly 20 years since another Lou Gehrig's disease sufferer, Sue Rodriguez, gripped Canadian hearts with her court battle for the right to assisted suicide. She lost her appeal but took her own life with the help of an anonymous doctor in 1994, aged 44.

In 1993, a Saskatchewan farmer, Robert Latimer, put his quadriplegic daughter Tracey in his pickup truck, attached an exhaust hose and watched her die. He said the 12-year-old functioned at the level of a three-year-old, living in pain, unable to walk, talk or feed herself.

Convicted of second-degree murder and sentenced to life imprisonment, after numerous appeals Latimer's conviction was upheld and he began serving his sentence in 2001. He was paroled a year ago.

In the latest case now unfolding, Taylor's lead lawyer, civil liberties defender Joe Arvay, argued to the court that assisted suicides were taking place despite the ban, a practice he likened to the illegal "back-alley abortions" of the past.

Taylor and her family won't testify, but she sat in the courthouse in her wheelchair. She has told reporters she can't even wash herself unaided or perform basic household chores. She called it "an assault not only on my privacy, but on my dignity and self-esteem."

She frequently uses a respirator. "I fear that I will eventually suffocate and die struggling for air like a fish out of water," she said.

Opponents argue that allowing assisted deaths could lead to abuses of the elderly and infirm. Dr. Will Johnston of the Euthanasia Prevention Coalition of Canada fears people could be pushed toward death when their lives are no longer convenient for others.

Supporters draw support from the Royal Society of Canada, the country's senior scholarly body. Its panel of professors and specialists in medical ethics and health law said in a report issued Nov. 15 that assisted death in Canada should be regulated and monitored rather than criminalized.

"A significant majority of the Canadian population appears to support a more permissive legislative framework for voluntary euthanasia and assisted suicide," the report said.

It said assisted suicide or voluntary euthanasia is legal in the Netherlands, Belgium, Luxembourg, Switzerland, and the U.S. states of Oregon, Washington and Montana, while in England and Wales the policy does not stipulate that every case must be prosecuted.

Johnston called the report "a euthanasia manifesto disguised as an impartial report."

Sheila Tucker, a lawyer with the British Columbia Civil Liberties Association, says the issue is back on the agenda because with the passage of time various jurisdictions have gained working experience with the legalities of assisted dying.

Johnston countered that Canadian political attitudes had not changed — that only last year Parliament voted 228-59 against changing the law to allow doctors to help people die "once the person has expressed his or her free and informed consent to die."

The British Columbia Supreme Court is expected to rule early next year, but Tucker is sure the decision will go to the Canadian Supreme Court, meaning no change in the law can be expected before next winter at the earliest.

By then, she said, Taylor may no longer be alive.

To be genuinely welcoming, church congregations in Canada try to treat people with intellectual disabilities as more than guests

By Chelsea Temple Jones in The United Church Observer in Canada. In the picture, Andreas Prinz and Marianna Adams inside Runnymede United in Toronto.

In the west end of Toronto, the grey sky threatens thunder. The heavy summer air pushes the heads of lilies down toward the sidewalk. Early this morning, there is no traffic flowing along the long vein of Runnymede Avenue, where a couple strolls comfortably, side by side, toward church.

“Today’s my birthday,” announces the man, Andreas Prinz. “I’m going to make a big change to be closer to God in all ways.” Marianna Adams, his partner, rolls her eyes. “I hope it happens.”

The church service at Runnymede United is held in the basement today because it’s so hot. Four fans are wheezing, and only one flickering candle is lit. Colourful tissue-paper art covers the walls, mimicking the intricate stained glass a floor above. A modest congregation of 30 people trickles down the stairs to take their seats. Prinz markets himself wisely, approaching the minister and the guest guitarist to tell them it’s his 37th birthday.

Eight years ago, a friend invited Adams to the church. When a congregation member asked her to join a worship band, she was hooked. Prinz tagged along to be near his girlfriend.

The two wait quietly for the service to begin. They like this basement worship space because it’s smaller and more intimate than the sanctuary. But the chapel upstairs is their favourite place. They go there, separately, to pray or cry.

Sometimes, Prinz is overwhelmed with longing for his mother, who died of cancer seven years ago. “I’m just very emotional,” Prinz says. “I care about people too much.”

“We both do,” Adams says. “People with Down syndrome show a lot of emotions.”

As people with developmental and other neurological disabilities are increasingly deinstitutionalized and integrated into their communities, the role churches play must also change. A common mistake inside church walls is to assume that people with disabilities have a stronger or weaker connection to God, or that their approaches to faith are somehow simpler or less varied than anyone else’s. Their presence in churches demands that we consider our religious interpretations of disability — from sinning and suffering to special and holy — and think about the many ways in which we are called into community. It will take serious attitudinal shifts to make sure people with disabilities don’t feel isolated. For their part, disabled parishioners are shedding the stereotypes and moving forward in their faith by simply being themselves.

“When you set people apart, what you’re really doing is creating another level of difference and another level of segregation. It’s just another way of pushing people to the margins,” says John Swinton, who, as chair of divinity and religious studies at the University of Aberdeen in Scotland, researches the theology of disability. “Disability, in all its forms, is just another way of being human.”

On the corner of a curved residential street in Hamilton is a house with a wider-than-usual front door. Inside, spotless hardwood floors accommodate three residents who use wheelchairs. One is 50-year-old Karen Chong.

Sitting in her rose-pink room, Chong doesn’t speak, though she sometimes moans. A lift hangs from the ceiling like a strappy, electrical anchor, nearly hitting the floor. Jin Lee, the summer student who works with her, announces they’re going for a haircut this afternoon. Chong lets loose a delighted wail. She loves to be pampered, to have her thick black hair done and her nails painted. Chong began attending various churches at age 10, when she moved into a group home for people with cognitive disabilities.

To communicate, Chong lifts her left arm to indicate yes, or her face becomes still for a few seconds before she bursts into a smile. To say no, Chong moves the same hand downward, toward the armrest on her wheelchair. She appears to understand my questions, and yet she has to sum up her answers because her communication options are so limited.

Do you feel like you belong to your church community? “Yes,” she responds.

Do people at your church think of you differently than you think of yourself? “No,” after a small spasm that delays her answer.

Chong says she feels a sense of equality with the people at her church and that she has a large group of friends there. She says she plans to worship at her church for a long time to come.

And finally: Do you think the people at your church have a realistic understanding of disability? “No.”

Weeks later, outside St. Paul’s United in nearby Dundas, Ont., where Chong has worshipped for the past 12 years, a sign on the front lawn features the blue wheelchair emblem and states, “FULLY ACCESSIBLE.” Inside, Chong sits in her purple wheelchair among a row of chairs midway down the aisle of wooden pews. The call to worship is ending, and Chong moans as the congregation responds, “and also with you.”

The congregation is invited to stand during hymns, but Janet Templeton, a friend of Chong’s, opts to sit. She wants to be on the same level as Chong. When the hymn ends, Chong wails, but nobody flinches. “Church is for everybody, not just people who sit quietly,” Templeton says later.

Midway through the second hymn, Templeton bounces out of her seat and wheels Chong out the door. The Disabled & Aged Regional Transit System (DARTS) has arrived to collect Chong and take her home. Transportation is an ongoing struggle. DARTS needs to be scheduled in advance, and the vans arrive in a 15-minute time frame that you don’t want to miss. Sometimes, the DARTS schedule doesn’t correspond to the church’s worship times. Chong missed an entire summer of church because of scheduling barriers she cannot control, leaving her with less power than a non-disabled person to participate in the spiritual community of the congregation. Now it’s autumn, and her first Sunday back at church is cut short.

Historically, several religions have linked disability to pitiful suffering through derogatory language. The Bible describes people with disabilities as “crippled,” “lame” and “disfigured.” Disability has been associated with punishment for sins or interpreted as a trial from God, designed to test the disabled person’s faithfulness.

Modern Christian images of disability are riddled with stereotypes of sufferers waiting to be healed or saved, of people having a special connection to God, and of heroes who overcome daily challenges simply by making it to church on Sunday. Even Christianity’s emphasis on striving toward the Kingdom of God presents us with an image of a world without suffering. Too often, in associating disability with suffering, people with disabilities are excluded from these metaphors.

In secular society, advances for people with disabilities in Canada have happened through litigation and activism. People with disabilities were one of the last groups to have their rights recognized when, in 1981, disability was included in the Charter of Rights and Freedoms. A 2004 study prepared by Environics for the Office for Disability Issues asked Canadians who played the most essential role in helping people with disabilities participate in society. Religious organizations ranked low on the list.

Though accessibility is on its radar, the United Church works largely reactively — particularly in Ontario, where the Ontarians with Disabilities Act recently became law and some churches, as public buildings, are now scrambling to fulfil their accessibility requirements.

While reactive inclusion is better than nothing, an attitude shift is what’s needed. In 2003, researcher Lilith Finkler took a look at three synagogues and found a link between the architecture of a place and the people worshipping within it. Some people with disabilities felt offended, for example, if a ramp was built as a fundraising project rather than funded through the synagogue’s ongoing budget. “People with disabilities need to be considered on an ongoing basis,” she says. “They’re not a special-interest project.”

Perhaps the most successful example of mixing disability and spirituality in Canada comes from the organization L’Arche, founded by Jean Vanier in 1964. L’Arche group homes are the only residences in Canada that mix spirituality, disability and everyday life.

For example, the L’Arche community in Richmond Hill, Ont., called Daybreak, caters to the spirituality of whoever shows up at its door — disabled and non-disabled. The regular programming includes church services, prayer times and meditation, along with friendship-building, woodworking, crafting and other community work.

As L’Arche communities have gradually sprung up throughout Canada, Vanier himself has been critical of other Christians. In 1998, his distinctive, sonorous voice was heard widely across the country when he gave the CBC Massey Lecture on belonging. He spoke about the rejection people with disabilities experience, and how they are institutionalized and excluded from communities without protest from the church. He challenged listeners to recognize and confront their fears about disability. “Fear is the root of all forms of exclusion, just as trust is the root of inclusion,” he said.

Back in Toronto, the sun is beginning to shine through the church basement windows. Adams adjusts herself and glances around the basement. “This is a very blessed day,” she says. “She’s not here.”

Neither Adams nor Prinz will go into detail (gossip doesn’t square with their spiritual values), but not everyone at Runnymede United makes them feel welcome. “I’m wondering if sometimes she and other people don’t like me because I have a disability. It makes me sad,” Adams explains.

People with communication differences or intellectual disabilities often face greater stigma, misunderstanding or exclusion than those with physical disabilities. “We assume that there’s something wrong in the mind,” says Swinton. “We don’t know what anybody’s thinking, never mind how someone who communicates differently is thinking. And the danger is that we make it up, and we make it up the wrong way.”

Some theologians reject the idea that disability is a personal problem, instead defining it as a social problem. They shift disability away from the idea that it ought to be cured or fixed, criticizing the harmful narratives pushed on people who don’t think of themselves as broken. “Sometimes Jesus was a guest; sometimes he was a host. Often people with disabilities are assumed to only be guests,” Swinton says.

So what are people called to do when they encounter disability? Perhaps simply some thinking. Consider that people with disabilities are no different than anyone else — no closer to or farther from God. Mull over the unfair labels cast upon people, and identify the sources of those labels. Face fears and insecurities about disability and perhaps admit how little of the topic we care to understand. “The heart of the Gospel has to do with friendship with God and with one another. And if we miss that, we miss the possible gifts disability brings to us, we miss out on being more faithful people,” says Swinton. While scholars grapple with the subject, people with disabilities remain seated at the metaphorical table, ready to worship. It’s the rest of the flock that needs to catch up.

The church service is over, and Adams bolts toward the entrance. She embraces her friend in a long-lasting hug. Her friend’s cat died last week, and Adams has been wondering about her for days. By theological measurements, Adams could be the initiator of belonging in her church.

Building a sense of belonging and developing a “ministry of noticing,” as Swinton calls it, is something churches can do that rights-based activism cannot. “To belong, you have to be missed,” Swinton says.

The congregation is about to be seated again, to gather their things and follow the minister out of the church basement. Suddenly, from the back of the church, someone pipes up,

“And if I could just announce, it’s Andreas’s birthday today!”

The pianist strikes the D note, and the congregation erupts in song. Prinz beams with pleasure, and Adams pulls him close for a kiss. The congregation’s singing rings through the air more jovially and robustly than any of the morning hymns.

Medicine used for sleep aid shows promise to "wake" people from vegetative state

From The NY Times Magazine:

The moment she saw him, Judy Cox knew her son was dead. It was an October morning in 2008, and she had just stepped out the door to run an errand when she found him lying faceup in the driveway, ghost white, covered in purple splotches. He wasn’t breathing, and when she couldn’t revive him, she ran screaming into the house where her husband, Wayne, was still asleep. “Chris is dead,” she cried. “Call 911!”

Wayne jumped out of bed and raced down to the driveway, where he knelt over his son’s limp frame and tried frantically to elicit a breath or a heartbeat. As he pumped Chris’s chest and scooped out the vomit that had collected in his mouth, Judy ran to the kitchen and steadied herself long enough to call for an ambulance.

Chris was 26. He had not been well. An A.T.V. accident the previous August left him with debilitating back pain that physical therapy did nothing to alleviate. His doctor had recently prescribed Oxycontin. His parents learned later that he had taken too much.

By the time the ambulance arrived, Chris’s heart had been still for at least 15 minutes. It took the paramedics another 15 to get it pumping again; even then, doctors had little hope he would survive. Brain cells begin dying off just five minutes after blood stops delivering oxygen. After 30 minutes, there is likely to be more dead tissue than living.

Nonetheless, the emergency-room staff members at the local hospital did their best. They hooked Chris up to a tangle of tubes and machines and injected him with drugs to stabilize his heart rate. Wayne and Judy watched helplessly from the hallway. After four hours, a doctor finally summoned them to a secluded corridor.

Chris was in a coma, the doctor said, and in all likelihood had suffered severe, irreversible brain damage. He was breathing only with the help of a ventilator and would probably have a series of heart attacks in the night.

“First they asked us to let them pull the plug,” Judy recalled one recent afternoon, as we sat in the living room of the Coxes’ house in a Memphis suburb. “Then they tried getting us to sign a do-not-resuscitate order.” Without one, the doctor explained, hospital staff would be forced to revive Chris each time he started slipping away, which could mean cracking his ribs and shocking him with electricity. Even if they managed to keep his body alive, what was left of his brain would surely die in the days ahead.

Wayne and Judy refused to sign. “This is not some dog we’re talking about putting down,” Wayne shouted. “This is our son.” Chris still lived with his parents. He was a good kid, a joker, but bashful, especially around girls. He liked playing basketball and fishing in the pond near his house. He was planning to take over the family repo business when Wayne retired in a few years. Before the A.T.V. accident, he’d never given them much trouble at all. He deserved every chance the hospital could give him.

The heart attacks never came. Four days later, Chris woke up.

It was not the awakening of Hollywood movies in which the patient comes to, just as he was, speaking full sentences and completely mobile. Three years later, Chris still cannot talk. Although he breathes on his own, his lungs battle a steady barrage of infections; a feeding tube provides all his sustenance, and his muscles have contracted into short, twisted knots. He can move only the slightest bit — his fingers and eyelids twitch, but his arms and legs remain mostly immobile — and his neck is not quite strong enough to hold up his head, which leans against a crescent-shaped support around his wheelchair headrest.

Still, Wayne and Judy say that his cognition is improving. On good days, they say, he can respond to basic commands — blink his eyes for yes, wiggle his finger for no, give a thumbs up when asked. Doctors agree that Chris has progressed beyond a vegetative state, to a hazy realm known as minimal consciousness. What that means — what it says about his experience of the world around him or his prospects for further recovery — is something they are still trying to figure out.

Convinced that the son they know and love is still “in there,” Chris’s parents have spent the past three years searching for a way to bring him back out. So far, their best hope has come from an unlikely source: Ambien. A growing body of case reports suggests that the popular sleep aid can have a profound — and paradoxical — effect on patients like Chris. Rather than put them to sleep, both Ambien and its generic twin, zolpidem, appear to awaken at least some of them. The early reports were so pronounced that until recently, doctors had a hard time believing them. Only now, more than a decade after the initial discovery, are they taking a closer look.

The first report of a zolpidem awakening came from South Africa, in 1999. A patient named Louis Viljoen, who, three years before, was declared vegetative after he was hit by a truck, had taken to clawing at his mattress during the night. Thinking he was suffering from insomnia, his family doctor suggested zolpidem to help him sleep. But 20 minutes after his mother ground the tablet up and fed it to him through a straw, Viljoen began to stir. His eyes, which normally wandered the room, vacant and unfocused, flickered with the light of consciousness. And then he began to talk (his first words were “Hello, Mummy”), and move (he could control his limbs and facial muscles). A few hours later he became unresponsive. But the next day, and for many days after that, zolpidem revived him, a few hours at a time.

Here was a case worthy of Hollywood: three years was well past the point at which doctors would expect any sort of spontaneous recovery. Viljoen awoke with the ability to speak in complete sentences. Not only did he recognize his mother, but he also recognized the voices of people who had spoken to him only when he was apparently vegetative. He remembered nothing of the mysterious realm he kept receding back into. When doctors asked him what it was like to slip away, he said he felt no changes at all. But he could recall conversations from the previous day’s awakening, along with bits and pieces of his former life: his favorite rugby team, specific matches he attended, players that he rooted for and against. As time passed, his cognition improved. He could laugh at jokes, and his awakenings stretched from a few hours to entire days. Eventually, he no longer needed zolpidem.

In the years that followed, a steady trickle of similar reports emerged — some from doctors who tried zolpidem after hearing about the Viljoen case, others from those who discovered its benefits accidentally, as Viljoen’s doctor had. The drug did not work for everyone, and even when it did, its effects typically wore off after an hour or two. But for a lucky few, those effects were profound. People who seemed vegetative for years were waking up.

There are roughly 200,000 patients in the United States trapped in the borderlands between consciousness and oblivion. Until recently, most doctors believed that recovering from this condition was not possible. Vegetative states were considered permanent after three months if the injury was caused by oxygen deprivation, or one year if it was caused by blunt trauma. And since minimally conscious patients did not fare much better than those who were vegetative, most doctors did not bother to draw the distinction.

But in the past decade, a series of developments have coalesced into a far more complicated picture than previously imagined. In 2003, an Arkansas man named Terry Wallis emerged, after 19 years, from a minimally conscious state. Neuroimaging suggested that his brain had essentially reconfigured itself — surviving neurons bypassed dead ones and forged new connections to one another. In a 2007 Nature paper, Nicholas Schiff, a neurologist from Weill Cornell Medical College, and his colleagues showed that deep brain stimulation — surgically implanting a “brain pacemaker” that sends electrical impulses to specific regions of the brain — can help some severely injured patients recover the ability to speak and eat, years after the injury. And just this month, Adrian Owen, a British neuroscientist, reported in the journal The Lancet that the brains of some patients who seemed vegetative responded to basic commands: their bodies didn’t move, but distinct patterns of neuronal firing were detected on EEG scans when these patients were told to make a fist (which triggered one region of the premotor cortex) or wiggle their toes (which triggered another).

This year, scientists at Moss Rehabilitation Research Institute and at the University of Pennsylvania, both in the Philadelphia area, began the first large-scale clinical study of zolpidem as a treatment for disorders of consciousness. (Amantadine, a drug used to treat Parkinson’s disease, and the anti-anxiety medication Ativan also show promise in increasing awareness in minimally conscious patients.) So far, the evidence suggests that less than 10 percent of brain-injured patients will experience the drug’s paradoxical effects, and that among those, only a few will respond as profoundly as Viljoen did. For families like the Coxes, such odds provide a tortured kind of hope. For doctors, they bring questions. Why does a sleeping pill induce awareness in some patients but not others? And what can these bizarre awakenings tell us about the brain’s ability to heal?

Two weeks after Chris first emerged from the coma, he began tracking objects with his eyes. At one month, he could follow simple commands. “His friends would come in the room, and there’d be two or three on each side of the bed,” Judy recalled. “And eventually, when they’d say, ‘Look at Jim,’ or ‘Look at Bob,’ he’d fix his eyes on the right guy.” Wayne and Judy asked for a follow-up M.R.I., but their neurologist said it would be pointless. Chris’s behaviors were entirely reflexive, he said; they were produced by his brainstem, which regulates basic functions like breathing and body temperature, not by his cortex, the region responsible for higher-order thinking. That Chris’s friends and family saw him following commands was proof of their denial, not of Chris’s recovery.

“Every couple days, the doc would stop in the doorway and shout Chris’s name to see if Chris responded,” Judy said. “But he wouldn’t come in the room and look at Chris up close. So one day, I practically grabbed his arm and dragged him into the room, over to Chris’s bed.” She told Chris to blink his eyes. He did. Then she made the doctor walk across the room and told Chris to keep his eyes on the doctor. He did. Finally, with the doctor standing across the room, eyes fixed on Chris, she asked Chris to give her a thumbs up. When he wiggled his thumb, just the tiniest bit, the doctor’s jaw dropped. Chris was not in a vegetative state after all. He was minimally conscious.

Still, there was little that the community hospital could do for him. It had neither the resources nor the expertise to tease out a prognosis or chart a course of therapy. The same was true of local nursing homes, which is where many patients like Chris end up.

So Wayne and Judy took over their son’s care, bringing him first to a premier brain-injury center in Atlanta (where Chris had a device implanted in his spine, which releases drugs to help with spasticity) and then to a clinic in Destin, Fla. (where he tried an experimental treatment known as hyperbaric oxygen therapy). They had just made their way back home to Tennessee when a friend told them about the Ambien paradox and the clinical trial in Philadelphia.

One hallmark of the minimally conscious state is a rapid fluctuation between levels of awareness. Spend 10 or 20 minutes with Chris Cox, and you might conclude that there is nothing going on upstairs. But spend a full hour, and at some point you’ll see his puppy-dog eyes come into focus. They will appear to search for one of his parents, or to settle quizzically on the new person in the room. Ask him to say something, and he’ll smack his lips frantically before leaning forward and tapping his feet in apparent frustration. You’ll swear that he is there with you and that only his physical infirmities (he cannot quite swallow or control his jaw) prevent him from describing the netherworld from which he has just emerged.

And then, a few minutes later, he’ll slip away again.

This fluidity makes diagnosis a challenge. “If a patient follows every command you give them, you know that,” says Dr. John Whyte, director of the Moss Institute and lead investigator on the zolpidem trial. “If a patient has never, ever followed a command, you know that too. But if you tell a patient to wiggle their finger, and they do it occasionally — which is the case for most of these folks — how do you figure out if that ‘occasionally’ means something or not?”

Whyte has spent his entire career trying to answer this question. His first job after his residency was at a facility with a large number of vegetative patients. While working there, he was struck by the amount of contention over diagnoses. For all their experience with this population, clinicians could not seem to agree on whether any given patient was actually conscious. Family members also argued, with one another and with staff, over the meaning of every wince, twitch and eye flutter.

It turned out that a lot of people — staff members included — were drawing their conclusions from pure coincidence. Whyte told me about one mother who insisted that her son would point down toward his feeding tube to indicate that fluid was leaking onto his stomach, causing irritation. “He did it while I was there,” Whyte says. “And she lifted his shirt and said: ‘See, doctor, there’s the liquid. He’s communicating with us.’ And I said: ‘How often do you look under there when he isn’t pointing like this? Never? Not even once?’ ” It was possible that the pointing corresponded to the leak, Whyte explained. But it was also possible that the leaking was constant and the pointing was random. There were countless other examples. “Behaviors would be exceptions if they happened at the wrong time, and evidence if they happened at the right time,” Whyte says.

To help eliminate this bias, Whyte developed what he calls the single-subject assessment, in which doctors design a set of tests specific to each patient’s idiosyncrasies to determine whether the patient is vegetative or minimally conscious. It is painstaking work, but the information it yields is significant. “Patients who achieve minimal consciousness early tend to have a better prognosis,” Whyte says. “And you can at least try to build a communication system with them, because you have a foundation to work from.”

With a reliable assessment method in place, he began searching for ways to build on that foundation. Then the curious Ambien awakenings caught his attention.

It’s not entirely surprising that Ambien would arouse instead of sedate. The pill has long been linked to reports of bizarre sleepwalking behavior (not to mention sleepeating, sleeptalking, even sleepdriving). Some scientists call this phenomenon “paradoxical excitation.” So far, none of the accepted determinants of prognosis — age, overall health, the nature of the initial injury or the extent of brain damage as determined by an M.R.I. — have proved useful in predicting which brain-injured patients will experience it and which won’t. To begin answering that question, Whyte says, you need to study both responders and nonresponders in an unmedicated state.

One morning this past March, I met Chris, Wayne and Judy at the University of Pennsylvania’s main hospital, where they had been flown in from Tennessee, at the study’s expense, so that Chris could be tested in an unmedicated state. From the corner of a small hospital room, we watched as Whyte’s research assistant, Andras Szeles, attached dozens of tiny electrodes to Chris’s face and scalp, then fitted him with a large headset. The electrodes would measure Chris’s brain activity as Szeles administered a series of cognitive tests.

For one test, Szeles placed a rubber glove on Chris’s right hand. A voice coming through the headset told Chris to either “squeeze glove” or “squeeze bare,” several times over. Chris did not seem to be responding at all, but Szeles explained that the electrodes would measure what the naked eye could not. “We’re not so interested in whether or not Chris can squeeze,” he said. “We just want to know if he’s trying to squeeze.” Different neurons fire when you move your left hand versus your right hand. They also fire if you imagine moving it, prepare to move it or start to move it but stop, all of which the electrodes would detect.

“The term ‘consciousness’ can be a real can of worms,” Szeles said. “There are degrees of awareness, and it’s not always clear what the threshold should be. What we’re really looking for here is evidence of comprehension and will.” If Chris understood the words “squeeze” and “glove,” knew that this very specific thing was being asked of him, and possessed, at the most basic level, the will to respond, a distinct pattern of brain waves would show up in the results.

After Whyte and his team have tested 80 patients, they will compare the results of zolpidem responders to those of nonresponders and look for clues that might help explain the difference — maybe a specific brain region that lights up unexpectedly, or a pattern of neuronal firing common to one group but not the other. Any such discovery could light a path not only through the labyrinths of Chris’s fractured mind but to a better understanding of consciousness itself.

Wayne and Judy have a more immediate question: they want to know their son’s long-term prognosis. Has he reached the pinnacle of his cognitive recovery? Or is it a launching pad from which greater heights might be reached?

“Once a patient progresses to minimal consciousness, we can’t predict what’s going to happen,” says Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College and author of a coming book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.” Some patients have recovered full consciousness, but many more remain stuck in limbo. The only way to know the outcome is to give the patient time.

But offering time is a complex proposition. “Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be,” says Dr. Soojin Park, a neurointensivist at the University of Pennsylvania Hospital, and an investigator on the zolpidem trial. “And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.” At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. It’s an instinct reinforced by religious edicts that forbid the withholding of basic sustenance but allow, for example, unplugging artificial respirators.

It is not uncommon for doctors to assume the worst and advise family members to withdraw care early. They do so in part because they see their duty as helping loved ones face reality. But Fins argues that this is a cop-out. “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution,” he says. “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

According to several studies, about 40 percent of patients who have been declared vegetative are actually minimally conscious. Other studies have shown that a surprising number of vegetative and minimally conscious patients made huge strides toward recovery much later than conventional wisdom would predict.

Park says that more doctors are trying drug therapy on vegetative and minimally conscious patients, but for the most part, they are groping in the dark. “We still don’t understand which drugs should work on which patients, or at what dosage, or at what point in their recovery,” she says. “And that makes it tough for families to know when they should fight and when they should give up.”

There is also the matter of cost. Treating and monitoring patients like Chris — designing and performing single-subject assessments that can discern random twitches from deliberate behavior, managing the host of medical complications that can stymie brain recovery and continually evaluating progress — is significantly more expensive than placing them in nursing homes, where they receive basic care but have no access to brain-injury specialists. Proponents argue that the measures will save money in the long run — if the patient is able to go home, for instance. Still, it’s unclear whether even the most aggressive care will make much difference for many patients. “The payers need a better sense of what the likely outcome is for any given patient,” says Tom Smith, program director at Moss, “so that they can say with confidence which patients are likely to benefit from treatment, and how significant that benefit is likely to be. And I hate to sound this way, but then it’s basically: ‘Am I going to invest this amount of money to get this outcome? Is that worth it?’ And that is a tough, tough question to answer.”

When Chris first returned from the hospital, the Coxes’ house was flooded with well-wishers. A former teacher brought a quilt that Chris and his classmates made in grade school. Old girlfriends, acquaintances and childhood pals visited regularly. His high-school friends even held a fund-raiser to help pay for some of his therapy. But as time wore on, and it became clear that he would neither die nor fully recover, the guests dwindled. Besides Chris’s sister, Amber, who visits often, Wayne and Judy are now mostly on their own.

The couple surrendered their bedroom, which is on the ground floor of their split-level house, to Chris. They take turns sleeping there, on a small cot in the corner of the room, surrounded by medical equipment: a hospital bed with a queen-size air mattress that helps prevent bed sores, a special chair called a “sit-stand,” which can be cranked into an upright position and is supposed to help ease muscle contractions. A mechanical lift. A breathing machine.

Judy is especially keen to show me Chris’s latest gadget, a device called an Eyegaze, that looks a bit like an iPad, and which Chris is learning to use to communicate. She mounts it to a handlebar on Chris’s wheelchair. At first, Chris’s eyes move rapidly across several rows of icons — words with pictures, partial sentences like “I want” or “I like,” and cartoon images of friends and family members with their names in bold. Tracking his eyes, the computer reads: “Green. Brit. I want.” And then, “Brit–Brit–Brit–Brit–Brit.” Brit is his cousin. It’s unclear if he’s asking for her, or if his eyes are just not cooperating.

Judy puts the computer away. He still needs practice, she says. When they first tried it, in February, during outpatient rehab, the therapist asked Chris what color went with Valentine’s Day, and he was able to look at the “red” icon. But so far, “I want a drink,” is the only full sentence he has managed.

Each day begins with the same routine: Judy helps Chris up, forcing him to sit on the edge of the bed, without neck or back support, for several minutes. The goal is to strengthen his neck muscles so that one day he can hold his own head up. A nurse helps her bathe him and then lift him into his chair, so that he can be wheeled into the living room or taken outside. Three times a week, a van delivers mother and son to a rehab center, where a therapist works to stretch and stimulate Chris’s contracted muscles. And almost as often, either Wayne or Judy spends several hours on the phone, battling Chris’s insurance company, which they say has covered private nursing and weekly therapy but denied an extended stay at a brain-injury rehab center. The couple arrange their schedules so that their son is never without at least one parent.

The Coxes have surrounded themselves with a new group of friends — other parents with children like Chris. The families in this informal group share strategies and trade information on emerging research and experimental treatments. They also talk of weariness and isolation. “At the end of the day, you feel like you’re a thousand years old,” Judy says. “And you have no idea how you’re going to get up and do it all over again tomorrow.” Both Wayne and Judy admit to being frustrated by the slow pace of Chris’s progress. But he’s come this far; they can’t help hoping that he might come further still. “I know that some people, even people who loved Chris, think maybe he should have just died,” Wayne says. “But he didn’t die. He lived. And as long as he’s still breathing, we have to do the absolute best we can for him.”

The reports on zolpidem are still mixed. Viljoen and a few others have improved steadily over time; some of them are now fully conscious on their own, without medication. (Viljoen is confined to a wheelchair and has cognitive disabilities but has improved over the years.) But such improvement is rare. According to Whyte, most responders fall into one of two categories: those who can take zolpidem daily, with no appreciable loss of efficacy, and those for whom the “awakenings” wane with continued use. The latter type, he says, may be the most common.

With no way of knowing which type of responder Chris might be, the Coxes play it safe. They give Chris Ativan every day; it has a similar though less profound effect on his behavior. But zolpidem they hoard like pixie dust, giving it only on special occasions, when friends and family can be there.

They gave him some when I visited, so I could see how it works.

A few minutes after receiving the zolpidem, Chris opened his eyes and smiled. Judy sat on the bed, facing him. “Hey, buddy!” she said. “Can I have a kiss?” She leaned in, cheekward, but he turned his head up in what looked like a deliberate slight. “Chris!” she admonished, playfully. He smiled and grunted. He was teasing her. Just as she pulled away, he thrust forward and grazed her cheek with puckered lips. Confident that he was there with us, Judy took out a marker and some paper and wrote one command after another, each of which Chris followed: Stick out your tongue, give me five, give me a thumbs up. And then, “Show us your Elvis grin.” Chris curled his upper lip into a sneer. When Judy ran out of commands, Chris began smacking his lips and moving his tongue. “Talk to us, buddy,” Wayne said. “Say, ‘Mom,’ ” Judy said. After several moments, Chris managed a loud, slow “Maaaa.”

One of Top 10 CNN Heroes of 2011: Richard St. Denis and his nonprofit, World Access Project, who have provided hundreds of wheelchairs, mobility aids to people living with disabilities in rural Mexico

From CNN:

Since 2008, Richard St. Denis and his nonprofit, World Access Project, have provided hundreds of wheelchairs and mobility aids to people living with disabilities in rural Mexico.

St. Denis and his group also teach recipients how to use their chairs and maximize their quality of life.

CNN asked St. Denis for his thoughts on being chosen as one of the Top 10 CNN Heroes of 2011.

CNN: Where were you when you got the call that you'd been selected as a Top 10 CNN Hero?

Richard St. Denis: I was at home in Santiago Casandeje, Mexico. I was completely surprised.

I am honored to be one of the Top 10. The door has been opened to show the world the huge need for wheelchairs in Mexico, the plight of those who are stuck in their house because they can't move, and all the lives we are changing.

CNN: What do you hope this recognition will mean to the World Access Project?

St. Denis: I hope that many people and organizations will come alongside of World Access Project to help provide mobility and a better quality of life to the many disabled of Mexico. ... I hope that people will realize that poverty is poverty and (that) those who have so much (should) help those in desperate need, in whatever country.

I hope new volunteers, individuals or organizations -- from schools, churches -- will come to Mexico to give away a wheelchair, to encourage, to inspire and to change a life.

I started this organization because I saw the happiness, joy and ability of Leti, a 17-year-old girl who I gave her first wheelchair. When American volunteers participate in a wheelchair donation, they realize the huge difference they can make in another person's life and the unexplainable feeling of watching someone get up off the floor into their first wheelchair. The one who receives the wheelchair laughs, and the mother cries tears of joy.

I hope that not a single used wheelchair in the U.S. will ever be thrown into a dump and that every wheelchair that is sitting in a garage or basement will now be given to someone who desperately needs it.

I hope this award means we will be able to provide a new life and opportunities to all those in Mexico who deserve to be as independent and successful as people with disabilities in the U.S.

CNN: How will you use the $50,000 award that you receive for being selected as a Top 10 CNN Hero?

St. Denis: Every penny will go to World Access Project to continue the work we're doing.

In the past couple months, our financial levels have been dropping, and I was wondering if we would last another year. We have new cities we want to go to, and there are thousands of people in Mexico who need wheelchairs.

CNN: What do you want people to know most about your work?

St. Denis: In many rural, impoverished, uneducated areas of Mexico, people don't even know what a wheelchair is. They don't know what their disability is or why they can't walk. They have no hope, no expectation for the future, and no resources to change their situation. ...

We host clinics and camps to teach them how to use their wheelchairs so they can get out of their house. We use able and disabled volunteers to encourage them and give them hope. The Mexican government is trying to help, but doesn't have the financial resources or connections in remote areas to contact or help everyone. Many people in tiny pueblos have no electricity, dirt floors and cook using a wood stove. For a person with a disability to have a wheelchair is an unthought-of luxury.

I have seen the lives of many people changed after receiving a wheelchair.

Kike, who fell out of a tree when he was 12, is now an artist and helps support his family. Tomás was in a car accident, is now married, works in Walmart and has been promoted from greeter to the electronics department. Leti is married and has two children.

(With) a wheelchair, some motivation, a new perspective, love -- a new life is created. No degree, no training, no qualification is necessary. Just a willingness to provide mobility, motivate and encourage are all that is needed to help someone get to where they never imagined they could be.