Navigating Love and Autism

GREENFIELD, Mass. — The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.

Autism, Grown Up

Love on the Spectrum

Articles in this series are chronicling the coming of age of a generation of autistic youths. If you are a person with autism or a relative, neighbour, romantic interest or co-worker of someone who is, you can help inform this series. Alex Plank, left, the founder of WrongPlanet.net, for people with Asperger syndrome and other forms of autism, working on an Autism Talk TV segment for the site with Jack and Kirsten.

She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer. To Jack, who has a form of autism called Asperger syndrome, her mind was uncannily like his. She was also, he thought, beautiful.

So far they had only cuddled; Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.

“I don’t really like kissing,” he said.

Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.

On that fall day in 2009, Kirsten did not know that someone as intelligent and articulate as Jack might be unable to read the feelings of others, or gauge the impact of his words. And only later would she recognize that her own lifelong troubles — bullying by students, anger from teachers and emotional meltdowns that she felt unable to control — were clues that she, too, occupied a spot on what is known as the autism spectrum.

But she found comfort in Jack’s forthrightness. If he did not always say what she wanted to hear, she knew that whatever he did say, he meant. As he dropped her off on campus that morning, she replayed in her head the e-mail he had sent the other day, describing their brief courtship with characteristic precision.

“Is this what love is, Kirsten?” he had asked.

Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships. Parents and teachers have focused instead on helping them with school, friendship and, more recently, the workplace.

Yet as they reach adulthood, the overarching quest of many in this first generation to be identified with Asperger syndrome is the same as many of their nonautistic peers: to find someone to love who will love them back.

The recent recognition that their social missteps arise from a neurological condition has lifted their romantic prospects, they say, allowing them to explain behaviour once attributed to rudeness or a failure of character — and to ask for help. So has the recent proliferation of Web sites and forums where self-described “Aspies,” or “Aspergians,” trade dating tips and sometimes find actual dates. Lessons learned with the advent of social skills classes and therapies, typically intended to help them get jobs, are now being applied to the more treacherous work of forging intimacy.

The months that followed Jack and Kirsten’s first night together show how daunting it can be for the mindblind to achieve the kind of mutual understanding that so often eludes even nonautistic couples. But if the tendency to fixate on a narrow area of interest is sometimes considered a drawback, it may also explain one couple’s single-minded determination to keep trying.

A Meeting

Kirsten was first introduced to Jack in the fall of 2008 by her boyfriend at the time, who jumped up from their table at Rao’s Coffee in Amherst, Mass., to greet his friend, who was dressed uncharacteristically in a suit that hung from his lean frame.

Jack, it turned out, was on his way to court. A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion.

By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory. Kirsten’s boyfriend, a popular Amherst High senior, had offered to serve as a character witness for his former classmate, and the three spent much time together that year.

The boyfriend told Kirsten that Jack had Asperger syndrome: his condition may have blinded him to the possibility that the explosions, which he recorded and posted on YouTube, could well be viewed by law enforcement authorities as anything other than the ambitious chemistry experiments he saw them.

But if Kirsten noticed that Jack held himself stiffly, spoke with an unusual formality and rarely made eye contact, she gave little thought to his condition, other than to note that it ran in families: his father, John Elder Robison, is the author of “Look Me in the Eye,” a best-selling 2007 memoir about his own diagnosis of Asperger’s at age 39.

After reading of the intense interests that often come with the condition — the elder Mr. Robison’s passion for Land Rovers, he had written, was the basis for his successful business servicing luxury vehicles — Kirsten and her boyfriend made light: “I have Asperger’s for McDonald’s,” she would joke. But Jack was all too familiar with the book’s more sobering stories, too: about the despair his father felt in his youth as he looked at happy couples around him and his rocky marriage to Jack’s mother, which ended in divorce.

“All these young Aspergians want to know how to succeed at dating,” John Robison told his son after his speaking engagements. And as a high school girlfriend broke up with Jack over the course of that year, Jack began to wonder more urgently about the same question.

Kirsten’s two previous boyfriends had broken up with her, too, and her current boyfriend was an unlikely match — a charismatic extrovert with soulful blue eyes who thrived on meeting new people. But when she admitted at the outset of their senior year in high school that she envied his social ease, he had embraced the role of social coach.

Years of social rejection had made her, in his view, overly eager to please. “People will take advantage of you if you act that way,” he warned. “If you don’t watch out, you’ll be a natural doormat.”

Noting her tendency to speak in a monotone, he urged her to be more expressive. He sought to quiet her hand movements, gave her personal hygiene tips (“You can’t do that,” he told her flatly when she used her fingers to scoop up food she had dropped on a table at Taco Bell and ate it) and pointed out the unspoken social cues she often missed. He elbowed her as she spoke for long minutes to an acquaintance about her interest in animal physiology. “When people look away,” he explained, “it means they’re not interested.”

And sometimes, he was plainly upset by what he perceived as her rudeness. “I can’t believe you did that,” he huffed when his mother asked Kirsten how she was and she did not reciprocate.

Much of the time, Kirsten embraced the tutoring, which he punctuated with unabashed displays of affection. “I love this girl!” the boyfriend once proclaimed, tackling her on his mother’s couch. Diagnosed with attention deficit hyperactivity disorder at age 11, she never heard the word autism. They were convinced that with some effort she could become as socially adept as he was.

But she also chafed at his frequent instructions, which required constant, invisible exertion to obey. And she despaired of ever living up to his most urgent request: that she share her innermost feelings with him.

“Just don’t filter,” he said one night, lying in bed with her.

“It’s like the blue screen of death,” she said, describing her difficulty conveying her emotion with a widely used term for a Windows computer crash. “There are no words there.”

“You’re not a robot,” he insisted, intending to comfort her. “I know you can do this. You’re a human being.”

But not, she thought, the kind he wanted her to be.

In contrast to her boyfriend’s emotional probing, Jack’s enthusiasm for facts — like how far his green laser pointer could reach across the University of Massachusetts campus in Amherst — came as a relief. So, too, did his apparent lack of concern for fitting in. A supporter of President Obama, she found herself admiring Jack’s anti-Obama bumper sticker, which almost invariably elicited angry honks in left-leaning Amherst but once got him out of a ticket.

If Jack had trouble reading Kirsten’s expressions and body language, he also noticed that she had what he considered a perfect smile. On his laptop, he showed her bootleg episodes of his favourite TV show, “Breaking Bad,” about a chemistry teacher turned methamphetamine producer. And on the evenings when he argued libertarian positions with Kirsten’s boyfriend, a liberal Democrat, he often found himself disappointed when she went to bed early.

One afternoon in the fall of 2009 he asked if she was free to meet between classes at UMass, where she was enrolled as a freshman and he was studying chemistry for an associate’s degree. They talked about their childhoods in Amherst, both social outcasts even among their geeky classmates, offspring of academics. Jack’s poor grades reflected the hours he spent reading chemistry Web sites rather than doing homework; one teacher had suggested to Kirsten’s mother, an administrator at UMass, that she would be “a perfect candidate for home-schooling.”

Kirsten told Jack, at some length, of her desire to be a medical examiner. He replied, at even greater length, about chemistry, his interest having shifted from explosives to designing new compounds for medical use. Sometimes, as they circled the campus, she broke in with questions “What’s that?” she wanted to know when his descriptions grew technical, or “Why?” Accustomed to being treated with something more akin to polite fascination when he held forth on his favourite subjects — he often felt, he said, like a zoo animal — he checked to be sure her interest was genuine before providing detailed answers.

Jack, Kirsten noticed, bit his lips, a habit he told her came from not knowing how he was supposed to arrange his face to show his emotions. Kirsten, Jack noticed, cracked her knuckles, which she later told him was her public version of the hand-flapping she reserved for when she was alone, a common autistic behaviour thought to ease stress.

Their difficulty discerning unspoken cues might have made it harder to know if the attraction was mutual. Kirsten stalked Jack on Facebook, she later told him, but he rarely posted. In one phone conversation, Jack wondered, “Is she flirting with me?” But he could not be sure.

But Jack, who had never known how to hide his feelings, wrote Kirsten an e-mail laying them out. And when Kirsten’s boyfriend pleaded with her to tell him what was wrong, she did, sobbing. She could not explain, she said. She knew only that she felt as if she had found her soulmate.

Road Bumps

From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.

Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.

“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.

“Only deep pressure,” she showed him, hugging herself.

He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.

“I’m sorry,” he said helplessly.

They found ways to negotiate sex, none of them perfect. They kept trying.

What mattered more to Kirsten was how comfortable she felt for the first time in a relationship. Even if she did something wrong, she believed, Jack would not leave her. When he remarked on her obliviousness after she chattered on one day about vertebrate anatomy to their neighbour — “Matson was totally bored,” he informed her — there was no judgment, only pride that he had managed to notice. “Is that why he was yawning?” she asked, laughing with him.

She moved out of her dorm and into his apartment that fall. Despite his distaste for her habit of scavenging, he did not complain when she decorated his bare living room with a plastic orange, magnetic trains and a Wolverine action figure rescued from the sidewalk. And when he rejected her suggestion that a cat would make the apartment cozier, she did not push it.

She liked his large hands, with their long, tapered fingers and wide knuckles, and thought he was the most interesting person she had ever met.

“You’re very pretty,” he told her frequently, looking up from his computer on their kitchen table to appreciate her tall, slender frame, her big eyes bright under her dark bangs.

For his part, Jack rejoiced to find that Kirsten did not hold certain social expectations that had caused him anxiety with a high school girlfriend. He apologized, for instance, that he failed to get her a Christmas present because he had not been able to think of what she would like.

“It doesn’t matter,” she said with a shrug. “I can tell you what to get me next time.”

She tolerated his discomfort with public displays of affection, though she pushed for more in private. When he explained that his lack of expression did not mean a lack of warmth for her — he often simply forgot — she devised a straightforward strategy to help him.

“When I put my hand on your leg,” she said, “you put your arm on my back.”

It was the disagreements that spiralled into serious conflicts when they could not understand and, then, find a way to comfort each other that threatened to break them apart. One might start over Kirsten’s request that Jack hug her when she came home from school, or his perception that she was already angry at him when she came through the door.

“The more we argue, the worse it gets,” Jack said once, close to despair.

One night as Kirsten cooked dinner, he peered into the pan where she was sautéing vegetables to comment on the way she had cut the cauliflower.

“It’s too big,” he explained. “It won’t cook through.”

“It’s better when it’s not all mushy,” she insisted.

“No,” he said. “You’re just doing it wrong.”

Eventually, Kirsten, unable to contain her tears, fled to the living room.

“What I want,” she told him when they analysed their clashes in less-fraught moments, “is to be held and rocked and comforted.”

But Jack, believing himself accused of a slight he had not made, could not bring himself to touch her.

He needed to be apart, to cool down.

Once, he had tried to do as she requested, stiffly wrapping his arms around her, against all that seemed natural to him. But when it only seemed to elicit more tears, he did not try again.

Instead, he hovered near her. “Stop crying,” he would say, pacing the perimeter of the small apartment and returning to where she sat.

He could not distract himself at those moments, even with the chemistry entries on Wikipedia, or an old episode of “Breaking Bad.”

The Diagnosis

Looking for clues to fix her new relationship, Kirsten began frequenting autism Web sites like WrongPlanet.net, where hundreds of messages a day are posted. “Eligible Odd-Bods,” read one. Another, “Are relationships harder for Aspies?”

In the library, she paged through autism guidebooks, few of which contained any information about relationships, not to mention sex. But as she read about the manifestations of the condition, she recognized them — and not only in Jack.

A passage about the difficulty that people with autism have reading facial expressions reminded her of being mocked by a friend at age 5 with whom she had agreed to draw “angry ghosts.” The friend’s ghost had zigzag lines for scowling lips and a knitted brow. Kirsten, unsure how to depict anger, had drawn a blank-faced ghost with a dialogue box above its head that read “Grrr.”

In one chapter about the repetitive behaviour and thought-process “ruts” that are common among autistic people, she saw her own difficulty climbing out of her black moods. Many children of her generation who probably had Asperger’s, she read, were misdiagnosed with A.D.H.D. because autism carried more of a stigma. Girls with the condition, one theory went, were overlooked because their shyness was tolerated more and “mother hen” friends might shield them from the worst social isolation, as had happened to Kirsten.

And then there was the characteristic of autism — focusing on a detail rather than the whole — that seemed to define the nit-picky arguments she and Jack had daily, even hourly, it sometimes seemed. There was the one, for example, when they were trying to recount something that had happened at a particular hotel, but could not advance past the semantics of its size.

“The hotel was miles wide,” Kirsten had started. “And — ”

“It was not ‘miles’ wide,” Jack had broken in. “It was maybe an acre, but not a mile wide, I can guarantee it.”

“I don’t think you can guarantee it,” she had retorted — and so on.

These fights, which Jack had dubbed “Aspie arguments,” were not soul-sapping, like the ones where he could not comprehend her need for a certain kind of comfort and she could not abide his inability to give it. But the cumulative effect was exhausting. It had been Jack’s similar escalation of arguments with his father that had prompted John Robison to send him to the therapist who gave him the Asperger’s diagnosis at age 15.

No prescription would come with a diagnosis, Kirsten knew. The only drugs for autism treated side effects, like depression or anxiety; she already had medication for A.D.H.D. It might help her get more time for assignments at school, where the constant effort of social interaction sometimes left her drained and struggling even with tasks that should be easy for her. But mostly, she wanted to know if there was an explanation for the awkwardness that had plagued her for so long.

Her answer came in the fall of 2010, the result of a six-hour battery of questionnaires and puzzles and a visit with a psychologist. “Lack of awareness of self-impact,” the report read. “Diminished expression of ordinary social graces.” She had left, the doctor wrote, “without a parting word.”

Many others with the same diagnosis, she knew, were more impaired than she. In online forums, she encountered sceptics who saw Asperger’s as an excuse for rudeness — or, worse, a means of pathologizing essentially normal behaviour and diverting resources from those who were truly challenged. Her ex-boyfriend, she suspected, felt similarly about her own diagnosis when she reported the news.

But Kirsten took heart in the official acknowledgment and the community it made her a part of. She changed her account setting at WrongPlanet.net from “undiagnosed” to “Asperger syndrome” and persuaded her mother to pay for a therapist who specialized in treating people on the autism spectrum.

And between classes one day in the library that fall, she read the first chapters of “Thinking in Pictures,” the autobiography of Temple Grandin, the autistic animal scientist whose life story was made into an HBO movie. Kirsten, too, had always thought in pictures.

People with autism, Dr. Grandin suggested, can more easily put themselves in the shoes of an animal than in those of another person because of their sensory-oriented and visual thought process. Suddenly, Kirsten yearned for the kind of uncomplicated comfort and affection that came with a small furry animal.

She would talk to Jack again about a cat, she thought, closing the book.

A Meltdown

Kirsten’s diagnosis brought her closer to Jack.

Alex Plank, 25, the founder of the WrongPlanet Web site, also had Asperger’s and had enlisted Jack in the production of Autism Talk TV, featuring video interviews with autism experts.

Kirsten now joined them, and as they travelled to conferences, Alex’s tales of his own romantic ups and downs — echoed by many on his Web site — gave them perspective on their own dramas. “It’s easy for me to get a girl’s number,” he told them. “I can build attraction. But attraction isn’t enough.”

Still, Kirsten’s wish for more physical affection from Jack was proving harder to manage. Once, during a family gathering at his father’s house, she saw Mr. Robison put his arms around the woman he had been dating and would soon marry. That, she thought with a pang, was more than Jack would do unprompted even if there was no one around.

If she didn’t ask him so much, he would do it more, Jack countered. Didn’t she understand how fake it felt when he knew he was “supposed” to do it?

Yet when the opportunity arose to date other people, they did not take it. This past spring, a male student sitting next to Kirsten in anthropology class passed her a tic-tac-toe board he had drawn during a lecture. She played along, but when he asked her, “Do you have a boyfriend?” she replied, “Yes,” and that was the end of it. Nor did Jack, asked to lunch by his female lab partner, show any interest.

But at Fox Lane Middle School in Bedford, N.Y., where Jack and Kirsten, now Internet mini-celebrities, were invited to speak about autism, the staff asked them, “Have you ever thought about dating each other?”

“We’re so platonic,” Kirsten complained to Jack later. “They didn’t even know.”

Nor was she the only one now craving affection. “Why do you pet Tybalt more than me?” he asked after a visit to her mother’s house, referring to the family dog named for the Shakespeare character.

The talk about the cat, when she raised the issue again last spring, was not much of a talk. He was allergic, Jack told her. And the apartment already felt too small. It was obvious to him that it made no sense.

Yet he had grown up with a cat, Kirsten pointed out. His allergies were not so bad. She could keep him supplied with Zyrtec. If he wouldn’t hold her when she was sad, at least she could cuddle a cat.

It was obvious to her, too.

“I don’t want to talk about it anymore,” Jack told her.

They could both see the meltdown coming. This time, as she huddled, sobbing, in a chair in the living room, he stretched out next to her on the couch.

“Go in the other room,” she told him. “You don’t have to be here.”

But he wouldn’t leave.

Exploring Therapies

Jack and Kirsten considered autism a part of who they are, and fundamental to what drew them to each other.

But for a time this past summer, Jack became captivated by the idea of designing an empathy drug. On the nights when he was not manipulating the virtual economy of the computer game Eve Online, which he often played late into the night after Kirsten had gone to bed, he read all he could find on the hormone oxytocin, which has been linked to trust and social interaction.

A small study suggesting that some of the social difficulties associated with Asperger syndrome could be relieved temporarily by inhaling an oxytocin nasal spray had generated media interest the year before.

But to Jack, the more interesting possibility was a drug that worked on the same principle as the popular antidepressants called S.S.R.I.’s, whose effect could last considerably longer than a spray.

“I’m sure people are working on it,” he told Kirsten, showing her an obscure Wikipedia entry he had found on the subject one night. “But no one’s published anything so far as I could tell.”

He explained, in his animated way, why the chemistry should work, and also, why it might not.

Then he paused.

“I wonder if I took it, whether I would be better at being affectionate,” he said.

“I wonder,” she said, “what effect it would have on me.”

They had both undergone a different experimental treatment, for a study at Harvard Medical School. Jack’s father believed that earlier studies with that procedure, which delivered current to areas of the brain, had given him a temporary insight into other people he had not had previously. But they had noticed no such effect on themselves.

And Kirsten had been working hard with her own therapist to develop strategies for soothing herself. When she found herself in a bad-mood rut, she had agreed with her therapist, she would visualize Twilight Sparkle, the nerdy intellectual character in the animated children’s show “My Little Pony” — of which her knowledge bordered on encyclopaedic and whose goofiness made her laugh. She also kept a list of “twisted thoughts” that she sought to resist when they came, like her tendency to presume Jack was angry when he was making a neutral observation.

“I think it’s helping,” he told her.

A cat, she thought, would help more. In recent weeks, she had been showing him irresistibly cute pictures of kittens from a forum on Reddit.com called “aww.” But she did not mention the cat that night. Instead, she asked if he would come to bed with her rather than staying up to play Eve.

“Will you pet me if I come to bed?” he asked.

She agreed.

Giving Ground

Around Thanksgiving, Jack began to think that he should let Kirsten get a cat. Maybe he would keep the idea a secret, he thought, and make it a Christmas gift. He wasn’t sure.

But Kirsten, taking matters into her own hands, stopped by the animal shelter one day to see if it was possible to get a hypoallergenic cat.

There is no such thing, she told him on arriving home, but females, the shelter staff had told her, are less allergenic — so perhaps that was an option.

“Forget it, then,” Jack said absently.

He had not meant it as a final word. But Kirsten, feeling tears welling up, employed one of the new strategies she had discussed in therapy: going out for a drive, rather than wallowing.

Jack called on her cell phone almost as soon as she pulled out of their street.

“What are you doing?” he asked. “Are you — leaving?”

Trying to control her voice, she said nothing. And then, she managed, “No.”

She was driving into Amherst, hoping to see a friend.

In the apartment alone, he paced, the phone to his ear.

“Kirsten,” he said. “Just come back. We’ll get the cat.”

He did have one requirement: it had to be able to chase a laser pointer.

Dating Advisers

On a day early this month, before their planned trip to the animal shelter, Kirsten and Jack stood before a group of young adults with autism at the Kinney Centre for Autism Education and Support in Philadelphia, answering their questions while Jack’s father addressed their parents in a different room. “Did you ever think you would be alone?” one teenager wanted to know.

Kirsten answered first. “I thought I was going to be alone forever,” she said. “Kids who picked on me said I was so ugly I’m going to die alone.”

Her blunt tip on dating success: “A lot of it is how you dress. I found people don’t flirt with me if I wear big man pants and a rainbow sweatshirt.”

Then it was Jack’s turn to answer, in classic Aspie style. “I think I sort of lucked out,” he said. “I have no doubt if I wasn’t dating Kirsten I would have a very hard time acquiring a girlfriend that was worthwhile.”

A mother who had slipped into the room put up her hand.

“Where do you guys see your relationship going in the future?” she asked. “No pressure.”

Kirsten looked at Jack. “You go first,” she said.

“I see it going along the way it is for the foreseeable future,” Jack said.

One of the teenagers hummed the Wedding March.

“So I guess you’re saying, there is hope in the future for longer relationships,” the mother pressed.

Kirsten gazed around the room. A few other adults had crowded in.

“Parents always ask, ‘Who would like to marry my kid? They’re so weird,’ ” she said. “But, like, another weird person, that’s who.”

The Cat

The next morning, Kirsten woke up from a nightmare: they were late to get the cat, and she couldn’t reach Jack. She was riding a motorbike with pedals in weird places, and she couldn’t find the animal shelter.

In fact, they would have just enough time to reach the shelter before it closed after getting breakfast and buying a laser pointer with a lower-intensity red beam than his green one to test the prospective adoptees. In the car, Kirsten noticed a blinking “E” on the gas gauge, and the couple had the following exchange:

Kirsten: Oh, we need to get gas. Do you want to stop at the 7-Eleven?

Jack: No, we’ll stop on the way back.

Kirsten: How can you not get stressed when that thing is blinking?

Jack: I’m not intimidated by liquid crystal displays.

Kirsten: You know what I mean, you get anxious about everything.

Jack: I know we have at least 20 miles of gas.

Kirsten: We have to drive seven miles there, and then seven back.

Jack: No, we have three miles back.

Kirsten: Should we just stop at 7-Eleven?

Both of them breathed a sigh of relief when the only female kitten at the shelter pounced without hesitation on the red laser beam Jack shined into her cage. At home, however, she ran straight under the old-fashioned bathtub.

Jack bent down and scooped up the kitten, holding her up to the mirror above the sink. Kirsten stroked her black fur in his arms, their hands touching briefly across the kitten’s back, and in the reflection.

“Are you looking at yourself in the mirror?” Jack asked the kitten. “Are you smart enough to recognize yourself?”

They stood for a moment together, awaiting the reaction.

Postscript

This article has been revised to reflect the following correction:

Correction: December 30, 2011

An article on Monday about Jack Robison and Kirsten Lindsmith, two college students with Asperger syndrome who are navigating the perils of an intimate relationship, misidentified the character from the animated children’s TV show “My Little Pony” that Ms. Lindsmith said she visualized to cheer herself up. It is Twilight Sparkle, the nerdy intellectual, not Fluttershy, the kind animal lover.

New York Times

Presidential Proclamation–Anniversary of the Americans with Disabilities Act

Generations of Americans with disabilities have improved our country in countless ways. Refusing to accept the world as it was, they have torn down the barriers that prohibited them from fully realizing the American dream. Their tireless efforts led to the enactment of the Americans with Disabilities Act (ADA), one of the most comprehensive pieces of civil rights legislation in our Nation’s history. On this day, we celebrate the 21st anniversary of the ADA and the progress we have made, and we reaffirm our commitment to ensure equal opportunity for all Americans.

Each day, people living with disabilities make immeasurable contributions to the diversity and vitality of our communities. Nearly one in five Americans lives with a disability. They are our family members and friends, neighbours and colleagues, and business and civic leaders. Since the passing of the ADA, persons with disabilities are leading fuller lives in neighbourhoods that are more accessible and have greater access to new technologies. In our classrooms, young people with disabilities now enjoy the same educational opportunities as their peers and are gaining the tools necessary to reach their greatest potential.

Despite these advancements, there is more work to be done, and my Administration remains committed to ending all forms of discrimination and upholding the rights of Americans with disabilities. The Department of Justice continues to strengthen enforcement of the ADA by ensuring that persons with disabilities have access to community-based services that allow them to lead independent lives in the communities of their choosing. Under provisions of the Affordable Care Act, insurers will no longer be able to engage in the discriminatory practice of denying coverage based on pre-existing conditions, and Americans with disabilities will have greater control over their health care choices. And last year, I signed an Executive Order establishing the Federal Government as a model employer for individuals with disabilities, placing a special focus on recruitment and retention of public servants with disabilities across Federal agencies.

Through the ADA, America was the first country in the world to comprehensively declare equality for citizens with disabilities. To continue promoting these principles, we have joined in signing the Convention on the Rights of Persons with Disabilities. At its core, this Convention promotes equality. It seeks to ensure that persons with disabilities enjoy the same rights and opportunities as all people, and are able to lead their lives as do other individuals.

Eventual ratification of this Convention would represent another important step in our forty-plus years of protecting disability rights. It would offer us a platform to encourage other countries to join and implement the Convention. Broad implementation would mean greater protections and benefits abroad for millions of Americans with disabilities, including our veterans, who travel, conduct business, study, reside, or retire overseas. In encouraging other countries to join and implement the Convention, we also could help level the playing field to the benefit of American companies, who already meet high standards under United States domestic law. Improved disabilities standards abroad would also afford American businesses increased opportunities to export innovative products and technologies, stimulating job creation at home.

Equal access, equal opportunity, and the freedom to make of our lives what we will are principles upon which our Nation was founded, and they continue to guide our efforts to perfect our Union. Together, we can ensure our country is not deprived of the full talents and contributions of the approximately 54 million Americans living with disabilities, and we will move forward with the work of providing pathways to opportunity to all of our people.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim Tuesday, July 26, 2011, the Anniversary of the Americans with Disabilities Act. I encourage Americans across our Nation to celebrate the 21st anniversary of this civil rights law and the many contributions of individuals with disabilities.

IN WITNESS WHEREOF, I have hereunto set my hand this twenty-fifth day of July, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

Source: whitehouse.gov

Tests for disabilities in new-borns must : Bombay High Court

 

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HC ORDER State asked to make screening tests mandatory in hospitals across Maharashtra and maintain data related to tests

Hospitals across Maharashtra will have to carry out compulsory screening tests to check disabilities in new-born babies.  The Bombay high court on Friday directed the state government to make it mandatory to conduct tests on babies to check for disabilities and also maintain data of such tests.  A division bench of chief justice Mohit Shah and justice SJ Vazifdar was hearing a clutch of petitions filed by NGOs seeking implementation of the Persons with Disabilities (Equal Opportunity and Protection of Rights and Full Participation Act), 1995, which reserves 3% jobs in government departments for the differently-abled.

Advocate general Ravi Kadam assured the Bombay high court that the state will direct all state government-run hospitals, municipal corporations/councils and zilla parishads, as well as private hospitals to conduct tests and collate data on a quarterly basis. The court has asked the government to issue a notification to this effect by April 30.  The high court has asked the court-appointed committee to identify gadgets/devices/software required for visually impaired employees, within two weeks. Once this process is complete, government officers, including principal secretaries of the social welfare department and finance department, and representatives of blind associations, have been asked to sort out pricing issues.

“Within two months, it should be possible for the state [government] to find requirements of visually impaired and software required by them so as to enable them [government] to finalise budget to procure it [software],“ the high court said. Advocates Uday Warunjikar and Kanchan Pamnani said the government has still not cleared the backlog in appointing visually impaired as required under the Act and no recruitment of the visually impaired had happened in the past three years.  The HC has directed the state to submit the number of vacant posts, which would be available for the differently-abled under the reservation policy after 1996, when the Act came into force.

Let Us ACT Together!

Article on Rights of Persons with Disabilities Act working draft

From its very conception, the Rights of Persons with Disabilities Act has been fraught with controversies; quite a surprising situation given that most factions fighting for disability rights in the nation supposedly desire to present a united front. India, having signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in October 2007 with astounding alacrity, took almost three years to decide to draft a new piece of legislation, instead of bringing about over 100 amendments to the existing The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of 1995, to align laws in the country with international obligations.

The recent past has seen a flurry of activity in the written media about the working draft of the Act that was released on the 20th of November, 2010. As is the situation in case of every decision dealing with a great number of people with divergent ideas, this draft too has come under fire on several grounds and has received bouquets as well. The only crucial factor, however, is that the draft, termed as a working draft seeks not to be a decision, but a deliberative instrument meant to change as substantive suggestions come in.

One of the principal opponents of the law, Mr. Javed Abidi, Convenor of the Disability Rights Group, is of the opinion that the current draft legislation is, in entirety, against the letter and spirit of the UN CRPD. His opinion is based on the belief that the voices of persons with disabilities went unheard in the drafting process and that the Committee set up to draft the law is inept and displays a lack of “brain trust”. He has made it clear that in his belief, the Committee has lost any faith that he had in it and that it, along with the legal consultant, ought to be dismissed. Taking a strongly opposing stance, Mr. Prasanna Pincha, Special Rapporteur at the National Human Rights Commision, in his open letter detailing his opinion of the draft on first reading, states that “the working draft, in a certain sense, is way more radical/progressive than even the UNCRPD.” He goes on to congratulate the Committee and the legal consultant for executing the task of drafting such landmark legislation “with remarkable sensitivity and alacrity”.

Mr. Abidi insists that expert knowledge and the requirements of persons with disabilities have been disregarded time and again by the legal consultant, Dr. Amita Dhanda, and the Committee. On the other hand, the legal consultant informs that sub-groups had their deliberations with the legal consultant after consulting with larger civil society. These opinions were proactively obtained by committee members, for example on women with disabilities, even whilst in consultation with the legal consultant. The duty to seek opinion of civil society was on Committee members’ not the consultant; it was a duty which the members fulfilled in both letter and spirit. Another source who was intrinsically involved in the drafting process and worked on accessibility points out that the civil society has been involved throughout. The one meeting in September where the civil society was invited, “they derailed the entire process”. Also, the chair was always open to suggestions via e-mail. Mr. Mahesh Chandrasekhar, Advocacy Coordinator at CBR Forum opines that the manner in which the draft law has been published without any explicit statement soliciting civil society participation facilitates the creation of a situation where “the few people who have been in someways [sic] connected to the members of the committee are somehow trying to be engaged in this process”

It is, however, interesting to note that the very idea behind having a working draft is to listen to the suggestions of experts and concerned parties and make changes if required. The first explanatory note stating that “this working draft has been put together so that the Committee, the Disability sector, the larger civil society and the duty bearers can through a process of dialogue and deliberation arrive at a draft which can be accepted by all” seems like an explicit enough solicitation of expert opinion and civil society participation. It seems unwise to squander such an opportunity, basing one’s arguments, against the fruit of eight months’ worth of effort of numerous individuals, on grounds such as the fact that the Committee met for short hours with long gaps of forty days in between and that it was “lazy”. While much of the criticism leveled against those involved in drafting the law may be justified, one wonders whether it makes a substantive difference in ensuring there exists robust disability rights legislation within the nation. Given the parallels being drawn between the drafting process of the UN CRPD and that of the draft law under discussion, it would perhaps be pertinent to highlight the united efforts of the disability sector in the case of the former to present constructive criticism. The remarkable contribution of disability rights groups in the framing of the UN CRPD came from a conscientious attempt to criticize effectively and provide feasible alternatives. It certainly would be preferable if those criticizing the current working draft had substantive changes in mind and alternatives to offer, as was the case during the drafting of the UN CRPD. While much has been said about representatives who weren’t allowed a say in the drafting of the law, the fact that deliberations on the working draft are on and this is the ideal time to send in any substantive or structural changes that one would want to see in the draft seems to be ignored.

A question that has gained prominence of late is the suggestion of a Disability Code with dedicated legislation for special situations and for authorities such as the Disability Rights Authority. The suggestion was made for several reasons, such as the requirement of dedicated legislation that details the functioning of important bodies like the DRA and the constraint in space if an all encompassing law was to be drafted. Critics claim that this is against the wishes of the disability sector and is legally not viable while Dr. Dhanda states that it is a mere suggestion that arose out of practical discomfort and that it would effectively deal with issues of reconciling inherent differences and also allow for greater detailing to define the accountability of the DRA or rules governing it, etc. Mr. Pincha also wholly endorsed the concept, affirming that “common law to address commonalities, and specific laws, to address specificities depending on need and necessity” is what is required. A meeting held by CBR Forum in Bangalore on the 20th of December simply concluded that the idea required further discussion on public forums. All that this goes to show is that various shades of opinion exist within the disability sector and constructive suggestions and open discussions alone can hope to solve the deadlock one seems to notice forming. What effort has, thus far, been expended at criticizing issues that can neither be mended nor bear any consequence to the progress of the law, could perhaps now be used constructively to build on the foundation that the working draft sets.

It has been said quite succinctly that “There is no odor so bad as that which arises from goodness tainted.” One cannot help feeling that those advocating unity amongst and justice for the 70 million people with disabilities in India are the very same stalwarts who leave the sector fragmented. It is, perhaps, time for sincere attempts at reconciliation and for real and substantive criticism, if this landmark piece of legislation detailing the rights of the aforementioned 70 million people is to finally materialise.

Anindita Mukherjee

http://news.oneindia.in/feature/2011/01-04-rights-of-person-disability-act-draft-part1.html

http://news.oneindia.in/feature/2011/01-04-rights-of-person-disability-act-draft-part2.html


Why Are We Expected to Be Brave in the Face of Illness?

The headlines read "Oliver Stone Hails Michael Douglas’ Brave Cancer Fight" and "Brave Brett Michaels wins Celebrity Apprentice." Even as Belgian action movie actor Jean-Claude Van Damme recovers this week from his recent heart attack, I’m sure his friends are saying he is being brave about even the admission of this attack, which came just one day after his 50th birthday while filming a kickboxing movie.

Are those who suffer from stage-four cancer, such as actor Michael Douglas, brave? Are those of us who live with the chaos of chronic illness, such as musician Brett Michaels, who is one of 23 million insulin-dependent diabetics, brave? Are these individuals more courageous than actors Patrick Swayze or Farrah Fawcett, who lost their battles to cancer last year?

Does our society create grand expectations that exemplify bravery and courage as the only acceptable response to an illness crisis? Celebrities coping with health crises are just like the rest of us. They get up each morning and put one foot in front of the other, whether that means an unpleasant medical treatment or going to the grocery store — but these actions are typically photographed and labelled as signs of "bravery."

I am sympathetic to the friends of celebrities who appear as a guest on a television shows such as The View and are asked to reveal how their celebrity friend with illness is "really doing." There is no appropriate answer. If someone is truly a friend, as Danny Devito is to Michael Douglas, he is not going to say, "He feels terrible and isn’t looking too hot either." Instead he will comment on how brave his friend is. It’s a considerate response to an awkward question, and it does contain a hint of truth.

Is there an alternative to being brave?

While there are tools online such as an illness symptom checker, there are few ways to understand how one is coping emotionally with a disease. If those of us with illnesses were to sit in bed and sob uncontrollably, how long would it take until our friends stopped calling us brave and said we were a basket case? Can a good cry be a sign of bravery, too? Who among us is not brave while fighting a disease that threatens to take away our quality of life or life itself?

What exactly is bravery?

The definition of the word "brave" includes possessing or displaying courage, being able to face and deal with danger or fear without flinching, and making a fine appearance.

I believe anyone has dealt with the fears of a health crisis certainly has moments of bravery. But let us not forget that emotions are fragile at times; allowing ourselves to be vulnerable and let some emotions through is not only acceptable but a healthy coping tool. Tears do not signify a lack of bravery.

When our loved ones see us look the doctor in the eye and ask, "How long do I have to live?" they are seeing us "make a fine appearance" as the definition of bravery possesses. They may not see the tears that fall uncontrollably in the lonely moments at 3 AM. Brett Michaels’ Rock of Love show may have been a successful indulgence, but when he was fighting for his life, it was his daughter’s fear of growing up without him that "gave me this unsinkable strength," he declared on Oprah on May 19, 2010. "It gave me this amazing courage to want to survive."

How does one show bravery in the midst of illness?

In 2009 I spent eight days in the hospital when I contracted the flesh-eating bacteria in an ankle wound that quickly spread up my leg. To be honest, I felt brave at times. I did not shed a single tear. My husband brought my then-five-year-old son to the hospital to play with the electric bed and eat mac-and-cheese from the hospital cafeteria. I gritted my teeth every couple of hours when another medical professional would visit my room with the intent of causing some kind of pain.

So, within the context of the definition of bravery, I made a fine appearance. I don’t know if I possessed courage, but I tried to display it. When faced with danger (like the daily debriding of the wound) I did my best not to flinch. But what choice did I have? The needles, IVs, MRIs, and pain medication disbursement were not in my control. I tried to be brave, but most of the time I was just choosing to "act" brave, despite my fear of the procedures and pain, frustration of the circumstances, and even panic over the possibility of losing a limb or even my life.

Can faking bravery can be enough to get us through?

In conclusion, let us remember that bravery can be a choice. Even if we do not feel courage, we can still seek to display it, we can attempt to face danger without flinching, and we can make a fine appearance. At the same time, let us not forget that we are human beings who were designed to feel fear, need affirmation and loving support, and shed tears. For myself, this is intertwined with my faith in God and knowing when to surrender to the emotions and when to surrender them over.Finding the right balance between putting on a brave front, and being true to our own emotions is, I believe, one of the best coping tools we can discover for the journey of chronic illness.

Bravery comes in many forms, not all of them gallant or daunting tasks. Michael Douglas’ films list is likely not important to him at the moment. Despite side effects of treatment for stage-four cancer, he recently walked his daughter to school, revelling in the moment that he was able to do so and wanting to treasure the simple moments. His bravery came in venturing out into the public eye, where his appearance and strength could be observed and discussed. Each of us must decide our own definition of bravery, and for those of us who know how much we suffer in silence, it may be as simple as making a fine appearance and then being our true selves around those we love and trust the most.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, the largest Christian organization that specifically serves the chronically ill. Visit IFoundLisaAtHuffPost.com to for the current featured free download that will help you or someone you love cope better with chronic illness.

The Huffing Post

Advocates sue state over mental health cut-off

LOS ANGELES (KABC) — A class action lawsuit has been filed against Gov. Arnold Schwarzenegger and several Los Angeles County agencies because of state budget cuts.  The plaintiffs say cutting a $133 state million mental health program is discriminatory against the more than 20,000 special education students across California.  The 25-year-old program was run through county mental health departments and offered services required by federal law.

A spokesman for the governor said it’s ultimately up to school districts to provide those services and that there was nothing illegal about the governor cutting the program with a line item veto.  Public Counsel, Disability Rights California, Mental Health Advocacy Services and law firm Gibson, Dunn & Crutcher are some of the organizations taking part in the lawsuit.  The lawsuit also names as defendants the state departments of Education and Mental Health, the Los Angeles County Department of Mental Health, the Los Angeles Unified School District and the Los Angeles County Office on Education.

About 8,000 children are affected in Los Angeles County.

The Associated Press contributed to this report. (Copyright ©2010 KABC-TV/DT. All Rights Reserved.)

Reform long overdue in state-run disability care facilities

Sunday’s article by Sam Roe and Jared Hopkins about the deaths at a Chicago nursing facility for children and adults with severe developmental disabilities ("Children with disabilities die on care facility’s watch," Oct. 11) is shocking but all too familiar in the disability rights community. The individuals who have died at this facility–13 during the past decade–are the most vulnerable in society. They are individuals with significant, multiple impairments who depend fully on the skill, attention and goodwill of their caretakers. Look at the photos of the dead children printed alongside the article. Read their names. Notice that their parents are described as indigent, in prison, unable or unavailable to advocate for their children. Then read that the Illinois legislature recently exempted facilities like this one from recent nursing home reforms and, according to the article, there was no lobbying to include these facilities in the reforms.

Unfortunately, Illinois has a long history of institutionalization, exclusion and neglect of people with severe developmental disabilities. Placement of children with significant disabilities in separate facilities and segregated schools occurs in Illinois at a rate greater than the national average. Families with the fewest resources see their children living in facilities like this one, where staff members assume equipment alarms aren’t working without bothering to check them, where working alarms are turned down so low they can’t be heard and where staff are overworked and forced to take shortcuts that compromise safety.

Even children who are not medically fragile face the likelihood that they will be hidden away from other children during much of their school day. Nationally, Illinois consistently ranks near the bottom of all states when it comes to educating students with intellectual disabilities in the same schools and classrooms with other students. When compared to the national average, more special education students in Illinois ages 6 to 21 receive over 60 percent of their services outside the general education classroom.

Roe and Hopkins’ reporting illustrates the complex network of factors contributing to the deaths of these 13 individuals, such as state politics, economic interests, histories of exclusion and the invisibility of poor people of color with significant medical and educational needs.

– Susan L. Gabel, Chicago

Copyright © 2010, Chicago Tribune

Wed a disabled person, get 50,000 from state govt

It’s a bitter pill to swallow, but in India, the physically challenged have not been integrated into mainstream society. And marriage is the one institution where the stigma of being differently-abled is starkly highlighted. Now, the state government has decided to rectify this and is planning to launch a scheme where anyone marrying a disabled person will be awarded Rs 50,000. Social justice minister Shivajirao Moghe said the idea was to encourage marriages between the “disabled and the able-bodied’’.  Any person who marries a person with 40% or above disability—one who is certified as disabled—will be eligible. The government is of the opinion that the reward scheme will promote greater integration of physically challenged people into mainstream society, and will be implemented across Maharashtra. According to the 2001 census, there were 15.69 lakh persons with disabilities (PWDs) in the state. No data was available on unmarried PWDs.

While the plan has been welcomed in some quarters, many NGOs and activists have expressed their doubts over whether a monetary incentive is the way to go. Naysayers include Raju Waghmare, who is employed as a programme officer for handicap rights with the Human Right Law Network. “The scheme will encourage an able-bodied person to marry a financially independent disabled person for monetary gain,’’ he said. ‘We must go out to find partners’ Mrs. Varsha Hooja, trustee, ADAPT, an action group that promotes the cause of the disabled and others working and living together, felt that first priority should be given to creating awareness, promoting a disabled-friendly environment, and sensitizing society towards the abilities of the physically challenged. “Marriage will follow,’’ she said. On the other hand, the Handicap Welfare Association—a non-profit organization for the disabled by the disabled-—has welcomed the move. “If implemented in letter and spirit, the scheme could be a step towards the empowerment of the differently abled,’’ said Ravi Subbaiah, president of the association. To increase the reach of the welfare scheme, he cited the need to set up a disabled-friendly public infrastructure. “The disabled need to go out and interact with people in order to find a partner,’’ he said. Unfortunately, most cities in India do not have this infrastructure.

Maharashtra is not the first Indian state to award reward schemes. Goa and Karnataka governments have already taken steps by providing tax rebates and perks to corporates employing PWDs, a move that Waghmare believes is more effective towards integrating the physically challenged in society. Goa also has a similar marriage reward scheme. To prevent misuse of funds, social welfare officers will be in charge of implementation. The social justice and special assistance departments have a prepared a detailed proposal, which has been forwarded to the planning department for fund allocation.

Pratibha Masand Times of India, 9th October 2010

Killing of Unborn Children with Downs – Genocide

It is the opinion of this Society that the government is guilty of genocide, a crime against humanity which is a violation of the United Nations Convention on the Prevention and Punishment of the Crime of Genocide. New Zealand is a signatory to the Convention that was passed by the General Assembly on 9 December 1948.

Relevant section of the Convention on the Prevention and Punishment of the Crime of Genocide

Article II: In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:

  • Killing members of the group;
  • Causing serious bodily or mental harm to members of the group;
  • Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part;
  • Imposing measures intended to prevent births within the group;
  • Forcibly transferring children of the group to another group.

Our complaint is that in February 2010 the government of New Zealand instituted the “Antenatal Screening for Down Syndrome and other conditions – Quality Improvements” programme. This programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU] without public consultation. Cabinet papers obtained under the Official Information Act state that the outcomes of the programme will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being aborted.  The programme is funded by the state and targets all pregnant women in New Zealand in their first trimester on the basis of providing information to women to make decisions about their pregnancies, including abortion.  People with disabilities are the only group of people in New Zealand targeted for selective abortion. Down syndrome, and other conditions that are targeted, are genetic conditions that have no cure. The basis of first trimester screening is to enable woman to have an abortion within the 20 week timeframe if an abnormality is detected. Other reasons for prenatal diagnosis, such as parent education, hospital selection and delivery management, do not require testing during the first trimester and can be safely left until the later stages of pregnancy.  The preventing of birth of a group of people falls within the definition of genocide under international law.

This Programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU]. Documentation obtained under the Official Information Act from the Ministry of Health included the document Summary of Key Informant Interviews Antenatal Down Syndrome Screening Final Report which states that, “The programme will be cost beneficial for the population and the health system. The scan highlighted literature that supported the premise that the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”

This is eugenics which proclaims that only the perfect have a right to be born. The screening programme is a search and destroy mission and is a further major step on the slippery slope. The government seeks to conceal the true purpose of the programme by calling it a “quality improvement” rather than national screening programme. The government states that it is providing a service to families by giving them a choice whether to terminate the life of the child with Down syndrome or to allow the child to be born. We should be aware that this is part of a strategy of social conditioning. Right to Life contends that the government has decided that children with Down syndrome are not valued or wanted in our community. Its intention then is to encourage families to abort children with Down syndrome. The insidious option to terminate the life of the child will ultimately become a duty to kill the child before birth. With the acceptance of eugenics ultimately it may be expected that with the rationing of diminishing health resources the health care for the disabled will be restricted.

It is the opinion of this Society that the screening programme is in violation of Article II [d] of the Convention, Imposing measures intended to prevent births within the group. People with Down syndrome fall within the definition of “disabled persons” and are recognized under the UN Declaration on the Rights of Disabled Persons as a group which forms part of a nation. Under that Declaration disabled persons “have the same civil and political rights as other human beings” and must be protected, against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.” These rights are further reinforced under Article 10 of the Convention on the Rights of Disabled, which states “State Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

We request that the government cease this screening programme. In the event that the screening programme is not terminated Right to Life New Zealand will lay a formal complaint with the United Nations [The Office of the Special Adviser on the Prevention of Genocide] against the government of New Zealand for genocide by imposing measures to prevent births of children with Down syndrome. The World Health Organisation [WHO], states that the classification for Down syndrome is a “mild to moderate disability.” Most children with Down syndrome participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. Today people with Down syndrome live at home with their families and are active participants in the educational, social and recreational activities of their community. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Women who have an unborn child diagnosed with Down syndrome or any other disability need and deserve the support and compassion of the community to accept their child as a valued and loved member of the family and community.

The government should promote a culture of life by ensuring that families who have unborn children with Down syndrome receive compassion and are given all the encouragement and support needed to bring their child to birth. After the birth of their child they should be provided with the services necessary to assist them in providing for the special needs of their child.

Scoop Politics Independent News

Remarks by the President on 20th Anniversary of the Americans with Disabilities Act

6:26 P.M. EDT

THE PRESIDENT:  Thank you.  Good evening, everybody.  (Applause.)  Thank you so much.  Well, we have a gorgeous day to celebrate an extraordinary event in the life of this nation.  Welcome, all of you, to our White House.  And thank you, Robert, for the wonderful introduction.  It is a pleasure and honor to be with all of you on the 20th anniversary of one of the most comprehensive civil rights bills in the history of this country — the Americans with Disabilities Act.  (Applause.)

I see so many champions of this law here today.  I wish I had time to acknowledge each and every one of you.  I want to thank all of you.  But I also want to thank our Cabinet Secretaries and the members of my administration here today who are working to advance the goals of the ADA so that it is not just the letter of the law, but the spirit of the law, that’s being applied all across this country.  (Applause.)

I want to thank the members of Congress in attendance who fought to make ADA possible and to keep improving it throughout the years.  (Applause.)  I want to acknowledge Dick Thornburgh, who worked hard to make this happen as Attorney General under President George H.W. Bush.  (Applause.)

And by the way, I had a chance to speak to President Bush before I came out here, and he sends heartfelt regards to all of you.  And it’s — he’s extraordinarily proud of the law that was passed.  He was very humble about his own role, but I think it’s worth acknowledging the great work that he did.  (Applause.)

We also remember those we’ve lost who helped make this law possible — like our old friend, Ted Kennedy.  (Applause.)  And I see Patrick here.  And Justin Dart, Jr., a man folks call the father of the ADA — whose wife Yoshiko, is here.  (Applause.)  Yoshiko, so nice to see you.  (Applause.)

I also notice that Elizabeth Dole is here, and I had a chance to speak to Bob Dole, as well, and thank him for the extraordinary role that he played in advancing this legislation.  (Applause.)

Let me also say that Congressman Jim Langevin wanted to be here today, but he’s currently presiding over the House chamber — the first time in our history somebody using a wheelchair has done so.  (Applause.)

Today, as we commemorate what the ADA accomplished, we celebrate who the ADA was all about.  It was about the young girl in Washington State who just wanted to see a movie at her hometown theater, but was turned away because she had cerebral palsy; or the young man in Indiana who showed up at a worksite, able to do the work, excited for the opportunity, but was turned away and called a cripple because of a minor disability he had already trained himself to work with; or the student in California who was eager and able to attend the college of his dreams, and refused to let the iron grip of polio keep him from the classroom — each of whom became integral to this cause.

And it was about all of you.  You understand these stories because you or someone you loved lived them.  And that sparked a movement.  It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.  It grew when you realized you weren’t alone.  It became a massive wave of bottom-up change that swept across the country as you refused to accept the world as it was.  And when you were told, no, don’t try, you can’the — you responded with that age-old American creed:  Yes, we can.  (Applause.)

AUDIENCE MEMBER:  (Inaudible.)

THE PRESIDENT:  Yes, we can!

Sit-ins in San Francisco.  Demonstrations in Denver.  Protests in Washington, D.C., at Gallaudet, and before Congress.  People marched, and organized, and testified.  And laws changed, and minds changed, and progress was won.  (Applause.)

Now, that’s not to say it was easy.  You didn’t always have folks in Washington to fight on your behalf.  And when you did, they weren’t as powerful, as well-connected, as well-funded as the lobbyists who lined up to kill any attempt at change.  And at first, you might have thought, what does anyone in Washington know or care about my battle?  But what you knew from your own experience is that disability touches us all.  If one in six Americans has a disability, then odds are the rest of us love somebody with a disability.

I was telling a story to a group that was in the Oval Office before I came out here about Michelle’s father who had MS.  By the time I met him, he had to use two canes just to walk.  He was stricken with MS when he was 30 years old, but he never missed a day of work; had to wake up an hour early to get dressed –

AUDIENCE MEMBER:  So what.

THE PRESIDENT:  — to get to the job, but that was his attitude — so what.  He could do it.  Didn’t miss a dance recital.  Did not miss a ball game of his son.  Everybody has got a story like that somewhere in their family.

And that’s how you rallied an unlikely assortment of leaders in Congress and in the White House to the cause.  Congressmen like Steny Hoyer, who knew his wife Judy’s battle with epilepsy; and Tony Coehlo, who waged his own; and Jim Sensenbrenner, whose wife, Cheryl, is a tremendous leader and advocate for the community.  And they’re both here today.  (Applause.)

Senators like Tom Harkin, who’s here today, and who signed — (applause) — who signed part of a speech on the ADA so his deaf brother, Frank, would understand.  And Ted Kennedy, whose sister had a severe intellectual disability and whose son lost a leg to cancer.  And Bob Dole, who was wounded serving heroically in World War II.  Senior officials in the White House, and even the President himself.

They understood this injustice from the depths of their own experience.  They also understood that by allowing this injustice to stand, we were depriving of our nation — we were depriving our nation and our economy of the full talents and contributions of tens of millions of Americans with disabilities.

That is how the ADA came to be, when, to his enduring credit, President George H.W. Bush signed it into law, on this lawn, on this day, 20 years ago.  That’s how you changed America.  (Applause.)

Equal access — to the classroom, the workplace, and the transportation required to get there.  Equal opportunity — to live full and independent lives the way we choose.  Not dependence — but independence.  That’s what the ADA was all about.  (Applause.)

But while it was a historic milestone in the journey to equality, it wasn’t the end.  There was, and is, more to do.  And that’s why today I’m announcing one of the most important updates to the ADA since its original enactment in 1991.

Today, the Department of Justice is publishing two new rules protecting disability-based discrimination — or prohibiting disability-based discrimination by more than 80,000 state and local government entities, and 7 million private businesses.  (Applause.)  And beginning 18 months from now, all new buildings must be constructed in a way that’s compliant with the new 2010 standards for the design of doors and windows and elevators and bathrooms — (applause) — buildings like stores and restaurants and schools and stadiums and hospitals and hotels and theaters.  (Applause.)

My predecessor’s administration proposed these rules six years ago.  And in those six years, they’ve been improved upon with more than 4,000 comments from the public.  We’ve heard from all sides.  And that’s allowed us to do this in a way that makes sense economically and allows appropriate flexibility while ensuring Americans with disabilities full participation in our society.

And for the very first time, these rules will cover recreational facilities like amusement parks and marinas and gyms and golf facilities and swimming pools — (applause) — and municipal facilities like courtrooms and prisons.  (Applause.)  From now on, businesses must follow practices that allow individuals with disabilities an equal chance to purchase tickets for accessible seating at sporting events and concerts.  (Applause.)

And our work goes on.  Even as we speak, Attorney General Eric Holder is preparing new rules to ensure accessibility of websites.  (Applause.)

AUDIENCE:  Yes, we can.

THE PRESIDENT:  Yes, we can.

We’re also placing a new focus on hiring Americans with disabilities across the federal government.  (Applause.)  Today, only 5 percent of the federal workforce is made up of Americans with disabilities — far below the proportion of Americans with disabilities in the general population.  In a few moments, I’ll sign an executive order that will establish the federal government as a model employer of individuals with disabilities.  (Applause.)  So we’re going to boost recruitment, we’re going to boost training, we’re going to boost retention.  We’ll better train hiring managers.  Each agency will have a senior official who’s accountable for achieving the goals we’ve set.  And I expect regular reports.  And we’re going to post our progress online so that you can hold us accountable, too.  (Applause.)

And these new steps build on the progress my administration has already made.

To see it that no one who signs up to fight for our country is ever excluded from its promise, we’ve made major investments in improving the care and treatment for our wounded warriors.  (Applause.)  To ensure full access to participation in our democracy and our economy, we’re working to make all government websites accessible to persons with disabilities.  (Applause.)

We’re expanding broadband Internet access to Americans who are deaf and hard of hearing.  We’ve followed through with a promise I made to create three new disability offices at the State Department and Department of Transportation and at FEMA.

And to promote equal rights across the globe, the United States of America joined 140 other nations in signing the U.N.  Convention on the Rights of Persons with Disabilities — the first new human rights convention of the 21st century.  (Applause.)

America was the first nation on Earth to comprehensively declare equality for its citizens with disabilities.  We should join the rest of the world to declare it again — and when I submit our ratification package to Congress, I expect passage to be swift.  (Applause.)

And to advance the right to live independently, I launched the Year of Community Living, on the 10th anniversary of the Olmstead decision — a decision that declared the involuntary institutional isolation of people with disabilities unlawful discrimination under the ADA.  (Applause.)

So HHS Secretary Kathleen Sebelius and HUD Secretary Shaun Donovan have worked together to improve access to affordable housing and community supports and independent living arrangements for people with disabilities.  And we continued a program that successfully helps people with disabilities transition to the community of their choice.  (Applause.)  And I’m proud of the work that the Department of Justice is doing to enforce Olmstead across the country.

And we’ve finally broken down one discriminatory barrier that the ADA left in place.  Because for too long, our health care system denied coverage to tens of millions of Americans with preexisting conditions — including Americans with disabilities.  It was time to change that.  And we did.  Yes, we did.  (Applause.)

So the Affordable Care Act I signed into law four months ago will give every American more control over their health care -– and it will do more to give Americans with disabilities control over their own lives than any legislation since the ADA.  I know many of you know the frustration of fighting with an insurance company.  That’s why this law finally shifts the balance of power from them to you and to other consumers.  (Applause.)

No more denying coverage to children based on a preexisting condition or disability.  No more lifetime limits on coverage.  No more dropping your coverage when you get sick and need it the most because your insurance company found an unintentional error in your paperwork.  (Applause.)  And because Americans with disabilities are living longer and more independently, this law will establish better long-term care choices for Americans with disabilities as a consequence of the CLASS Act, an idea Ted Kennedy championed for years.  (Applause.)

Equal access.  Equal opportunity.  The freedom to make our lives what we will.  These aren’t principles that belong to any one group or any one political party.  They are common principles.  They are American principles.  No matter who we are — young, old, rich, poor, black, white, Latino, Asian, Native American, gay, straight, disabled or not — these are the principles we cherish as citizens of the United States of America.  (Applause.)

They were guaranteed to us in our founding documents.  One of the signers of those documents was a man named Stephen Hopkins.  He was a patriot, a scholar, a nine-time governor of Rhode Island.  It’s also said he had a form of palsy.  And on July 4, 1776, as he grasped his pen to sign his name to the Declaration of Independence, he said, “My hand trembles.  But my heart does not.”  My hand trembles.  But my heart does not.

Life, liberty,  the pursuit of happiness.  Words that began our never-ending journey to form a more perfect union.  To look out for one another.  To advance opportunity and prosperity for all of our people.  To constantly expand the meaning of life, liberty, the pursuit of happiness.  To move America forward.  That’s what we did with the ADA.  That is what we do today.  And that’s what we’re going to do tomorrow — together.

So, thank you.  God bless you.  And God bless the United States of America.  Let me sign this order.  (Applause.)
END                          6:44 P.M. EDT

EU development cooperation; does disability count?

Europe has declared 2010 to be the year against poverty and social exclusion. It is a good occasion to look at the European policy towards a group that knows only too well what poverty and social exclusion mean: people in developing countries living with a disability. Does European development aid reach people like Lila Maya in Nepal, who became blind as a baby and was isolated and mistreated until a local NGO helped her set up her business? Or Ricardo in Mozambique, who never went to school because of his paralyzed legs?

A vicious cycle
Poverty, exclusion and disability are interrelated. Poverty causes disability, because it means that people do not have access to health facilities, information and adequate food that could prevent a simple disease to develop into a disability. With proper treatment, Lila Maya might have not become blind. Disability in its turn causes poverty, because practical problems and social stigma exclude people with a disability from education and work to earn their own living. Ricardo makes a little money by repairing the clothes of his neighbours, but what would his life have looked like, if he had had access to school and a wheel chair?  According to the United Nations 650 million people live with a disability and 80% of those live in developing countries[1]. The European Union is a major player in development cooperation; it provides over half of all official development assistance worldwide[2]. An inclusive development policy of the EU can therefore really make a difference for people with a disability.
Beyond good intentions
In 2009 the EU ratified the United Nations Convention on the Rights of Persons with Disabilities. It is a legally binding convention which stresses the importance of international cooperation and states that countries should ensure that: ‘that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities’[3]. This means that, besides and above the good intentions which the EU expresses by announcing a Year against poverty and social exclusion, it has is a legal obligation to ensure that development cooperation reaches people with a disability. The Convention is an important landmark signalling a change in attitude.  In stead of talking about the handicapped who need to be cared for, people with a disability are now recognized as persons who have the right to participate in all aspects of society. Only countries that have ratified the Convention are bound to it. The EU already took this important step, but a number of European countries such as Norway, the Netherlands, Poland and Italy are still missing on the list.
Towards an inclusive European development policy
Europe has shown its commitment to the rights of the Lila Maya’s and Ricardo’s in the world. But to make sure they can
really benefit from European aid, more steps need to be taken.
  • Ratify: More countries should ratify the UN Convention on the Rights of Persons with Disabilities. This will show their real commitment and helps to make sure that we will come from good intentions to realization of rights. The EU should urge those member states that have not done so yet, to ratify the Convention as soon as possible. Together, the European countries can encourage other countries to ratify and of course to implement the  Convention.
  • Plan: The start of implementation is developing a good plan. A quick scan of relevant EU policy documents on disability and development does not give much hope. The Commission Work Programme 2010 refers to disability only once, in an annex and not in relation to development. The General development framework, makes no mention of disability at all. The Guidance Note on Disability and Development, published in 2004 by the European Commission[4] provides a number of useful principles, but apparently these are not put into practice. A good sign is that the Directorate General Development is considering to add disability to the list of ‘cross cutting’ issues. Recognizing disability as a cross cutting theme will help to ensure that attention will be paid to disability in all development activities: ‘mainstreaming’ disability. Already, the EU requires applicants of development grants to explain how the grant will benefit people with a disability. Besides mainstreaming disability in development activities, the EU will need to facilitate disability-specific services and support for disabled persons to empower themselves and to get access to mainstream services.
  • Learn: Developing such a plan is not easy. Implementing it will be even more challenging. Mainstreaming disability is a new concept and there are no studies yet that prove which strategies are successful. A lot can be learned from the experiences regarding gender and development. It is also important to do research regarding disability and development. Lessons should be drawn from good and bad experiences, to improve future  policies.
  • Measure. To know if efforts are effectively reaching people with a disability, it is important to collect data before, during and after interventions. How many people with a disability are living in the project area? Which disabilities do they have and how does this affect their ability to benefit from development efforts? Targets will need to be set on how many people with a disability will be reached by a certain effort. In most cases, the required data will be unavailable. People with a disability are not counted and therefore cannot be accounted for. Starting to collect these data will make them visible. This will require ‘disaggregation’ of data: asking projects to report on how many of the people they are people with a disability, just as they are often required to do regarding women and youth.
  • Involve. Last but certainly not least,  people with a disability should be involved in all the above. ‘Nothing about us without us’ is the adagio of the disability movement.
[1] UN 2006, Some facts about persons with disabilities, http://www.un.org/disabilities/convention/facts.shtml

Published by: Dutch Coalition on Disability and Development (DCDD) -Saskia Bakker

Disability law: Hunger strike called off

After the Centre partially conceded their demands, a group of disabled people on Wednesday called off their hunger strike held to protest against their poor representation on a committee which is drafting a new law to protect their rights.  Javed Abidi, convenor of the Disabled Rights Group, said the strike had been called off after the Centre’s positive response.

A S Narayanan, secretary of the National Association of the Deaf, told The Indian Express through a translator that Gopal Reddy, personal secretary to Social Justice and Empowerment Minister Mukul Wasnik, had confirmed that six more people would be added to the committee, of whom three were disabled. This would bring the total number of disabled people on the committee to six.  Following pressure from various disabled groups, the Social Justice And Empowerment Ministry had formed a committee in April to draft a new legislation, reflecting the UN Convention on the Rights of Persons with Disabilities, to replace the Disability Act, 1995. The first meeting of the committee will be held on Thursday.

Disability activists are looking for three main changes to the Act.

VINAY SITAPATI
Indian Express

Nasscom to start job portal for aspirants with disabilities

Deepa Kurup


It will issue advisories on working towards accessibility

Nascom

BANGALORE: Soon, the IT sector’s commitment to inclusiveness towards the disability sector will be etched in cyberspace. Industry trade body Nasscom (National Association of Software and Services Companies) will launch a dedicated portal that will facilitate recruitment for persons with disability by creating a repository of applicants, available skill-sets and potential recruiters.  This was one of the key agendas at the first-ever meeting of the newly constituted Nasscom disability advisory group. Disability rights activists, who celebrated the creation of this 12-member group last week, are now ecstatic to see that the group — comprising Nasscom, industry members and civil society groups — means business.

Info kits

Speaking to The Hindu, the group’s chairperson Pradeep Gupta said that the measures would work towards increasing employability for persons with disabilities. Further, the group decided that informative kits, prepared by the National Centre for Promotion of Employment for Disabled People (NCPEDP), would be circulated among Nasscom members to create awareness on existing initiatives. “ICT firms have their heart in the right place. Now, we will work towards getting the brain part right. There is no lack of will, but issues like accessibility (technical and physical) may not have been thought about. Our aim will be to build that awareness,” Mr. Gupta said. The group, with a tenure of two years, decided that Nasscom would issue advisories to its member companies. These advisories would be on physical accessibility (in accordance with guidelines submitted by NCPEDP on facilities such as ramps or lifts) and software or technical accessibility.  It would focus on compliance of websites and electronic products with international standards.  Javed Abidi, director of NCPEDP, believes that the creation of an industry forum can make an impact. Internationally, it is mandated that websites be WCAG. 2.0 Compliant (an international standard that ensures websites are disabled-friendly) and electronic goods are disability-friendly. “What has held us behind?” he asked.

Double standards

Today, a year after the Union Government issued guidelines that all websites be disabled-friendly, only one of the 5,000 sites has complied, he said. “Even private Indian firms that ensure disability-friendliness while creating or servicing goods for the international market have for long practised double standards when it comes to domestic products such as mobile phones, microwaves or even ATMs. If this group can achieve that transition it will be worthwhile.” While this is not a diktat to companies, it will at least create awareness and sensitivity in the private sector. Nasscom president Som Mittal said that the group would work towards leveraging technologies to skill people who are differently-abled, so they could find jobs and employability in various sectors. “Accessibility can be built into the design. But the real challenge will be to work towards building technology that can facilitate better access and inclusivity. Also, several companies already have inclusive programmes, for employment and training, and we hope other companies will benefit from their learning through this forum,” Mr. Mittal said.

The Hindu

Student Forum Reclaims Radical Disability Studies

By Miriam Berger, Assistant Features Editor

At a University where classes such as “Gender in a Transnational Perspective” and “Ethnographic Approaches to Queer Studies” have moved towards the mainstream, Allegra Stout ’12 nevertheless felt that something was missing.  “I’ve been interested in disability studies for a long time,” Stout said. “A lot of classes have disability as a side note, but I wanted a more focused way to look at it.”  Disability studies—an inter-disciplinary field that approaches disability as a key aspect of human experience and identity with important political, social and economic implications—will now be redeemed from its sidebar status in a new student forum led by Stout, as well as Ariel Schwartz ’12, and Meredith Holmes ’10, that meets Thursdays from 1:10 p.m. to 4 p.m.  “We are going to look at disabilities the way that everyone looks at race and gender,” Stout said. “The forum will study people with disabilities as a marginalized oppressed group and seek to create social theories about that experience.”  The Americans with Disabilities Act (ADA) of 1990 defines a disability as a “physical or mental impairment that substantially limits one or more of the major life activities of such individual.”  Under the ADA, Americans with disabilities are afforded similar protections against discrimination as the Civil Rights Acts of 1964.  According to Schwartz, disability studies have developed over the last few decades as a more theoretical approach to embodiment and the experience of having a disability.  “When you volunteer for the special Olympics, it’s not the same as looking at the issue from a social science, oppression based way,” Schwartz said.

The discussion-based forum, which requires about sixty to eighty pages of reading a week, is intentionally flexible to accommodate different learning styles and creative pursuits. Each of the eight participants is required to lead one class, submit several papers, and complete a final project.  One component of the discipline is the social model theory of disability.  “The idea is that instead of the traditional medical view of disability in which there is something internally wrong with a person, the social model locates a person in the interaction between him or herself and a society that isn’t set up for them,” Schwartz said. “It’s not that your leg is broken, but that society is disabling you.”  “Crip theory,” another element of disability studies, was developed in connection with queer theory and addresses the oppressive normalizing forces of society that shape the experience of disabled embodiment.  According to Sheila Mullens, Visiting Instructor in American Sign Language, this forum is part of a wider academic movement.  “There is such a need in advocacy, law, and education for an approach like this,” said Mullens, who incorporates lessons on deaf issues into her second year sign language course. “I think that this is a wonderful beginning. It is an important part of the community.”  Across the country, institutions such as Teachers College of Columbia University, University of California at Berkeley, and Temple University, have all instituted disabilities studies programs on both the undergraduate and graduate level.

Schwartz urged Wesleyan to consider taking a similar path.  “There are a lot of classes that deal with disabilities tangentially,” Schwartz said, noting in particular American Sign Language, Psychotherapy Pathology, Ethics of Embodiment, and the Psychology of Gender. “I easily counted 10 classes that could fit under a disability class course structure.”  Stout has a similar aspiration.  “In the same way that a few decades ago women studies and female, gender, and sexuality studies (FGSS) didn’t exist, disability studies are a new, rapidly growing discipline.” Stout said. “I hope that this student forum will lead to interest in more professors and classes specializing in this field.”  Such was the case for Emily Wenzel ’10, who had no prior exposure to these theories before hearing from Holmes about the forum.  “I think that it’s interesting to look at, or attempt to look at, these experiences through someone else’s perceptive who deals with these considerations everyday,” Wenzel said.  Wenzel, whose brother was disabled in an accident, found the open environment of the forum ideal for discussing topics, such as the appropriate terms to use for identification, often hesitantly approached in other courses. For Crystal Abbott ’10 this forum provided the opportunity to build upon previous activism.

“I’ve been involved in the autistic community for some time,” said Abbott, who is autistic. “Disability activism is something that I intend to be involved with all of my life. I see this forum as a resource for me to get a deeper academic knowledge about disability activism and history.”  Stout originally presented the idea for the forum during a meeting of Wesleyan Students for Disabilities Rights, a group that she founded last fall as a freshman. Stout, Schwartz, and Holmes all attributed their interest in this field to personal influences, such as the experience of a family member with a disability or positive volunteer encounters.  Stout, however, stressed that disability studies is not an all-encompassing term.  “Disability studies does not include everything that deals with disabilities,” Stout said. “It is opposed to some approaches to disabilities, such as organizations, medical practices, and charities that evoke pity.”  She echoed Schwartz’s sentiments that volunteering should not merely be about the volunteer helping the person with disabilities, but rather should accentuate the strengths of both parties in order for each individual to gain from the perspective of the other.

While the forum’s facilitators lauded the University’s attempts to increase the accessibility of campus, such as the recent wheel chair ramp installed at 200 Church, they noted that a wider campus awareness of these issues is still needed.  “Accessibility isn’t just about ramps,” Schwartz said. “It’s about lighting, about the way people teach, and a million other everyday things.”

Wesleyan Students for Disability Rights meets on Mondays at 8:30 p.m. in Usdan 114. Students can contact Allegra Stout (astout@wesleyan.edu) for more information on the forum or about the group’s campus work.

Family deported from Canada because their daughter has cerebral palsy

Rachel Barlagne with cerebral palsy is seen here with her mother, Sophie, and father, David

MONTREAL: A French family who immigrated to Montreal after being wooed by a Canadian embassy official in Paris has now been told they must leave the country because their daughter has cerebral palsy and places an “excessive burden on social services.”   David Barlagne settled in Montreal with his wife and two daughters in the summer of 2005, hoping to start a computer software business. Barlagne said he had forewarned Canadian authorities that his daughter, Rachel, has cerebral palsy, a congenital neurological disorder that causes lifelong unco–ordinated physical movement and posturing.  “I asked whether this would be a problem, and I was told that once my business was established in Canada after a couple of years, I could make a request for permanent residency and that it would simply be a formality,” Barlagne recalled.

Four years later, Barlagne’s business is thriving, and his wife Sophie teaches French to immigrants on a voluntary basis. But Citizenship and Immigration Canada has rejected Barlagne’s request for permanent residency because his seven–year–old daughter Rachel is considered “medically inadmissible.”   In a letter dated March 11, 2009, the government stated that because Rachel suffers from what it described as a “global developmental delay,” she “risks giving rise to an excessive burden on social or health services.” Rachel attends a public special–needs school, Ecole Victor–Dore, but has not required any medical attention. She is in need of some rehabilitation services, since she can’t walk or speak, but Barlagne has said he would be willing to pay out of pocket to help his daughter. “She’s just beginning to speak a few words,” he added.

All applicants seeking permanent residency in Canada must pass a medical exam. Barlagne and his wife passed the medical, as did their other daughter, 10–year–old Lara. But Rachel was rejected even though the immigration official who made the final decision never actually met her.   “It’s very unfair,” Barlagne said. “What I find particularly unjust is that a representative of the government of Canada had told me: ‘Come to Canada, no problem,’ yet after arriving in Quebec and contributing to society here, we can’t stay anymore.   “It’s very stressful,” he added. “Our lives are on standby.”   Barlagne is seeking a judicial review in Federal Court of Immigration Canada’s decision. The hearing is scheduled on Feb. 23.   If they lose, the family would have to leave the country immediately. And if they were to win, the review would mean that another Immigration Canada adjudicator would have to look over their file ? and not necessarily reverse the earlier decision.  Patrice Jourdain, a lawyer who specializes in securities law, has decided to take up Barlagne’s case pro–bono, outraged by what she calls the “cold, heartless” decision by immigration officials.

“There are so many categories of children who come into Canada with learning disabilities that are not identified in the medical exam and who wind up costing the system more,” she said.   “This family has the financial means and the will to provide for their daughter to overcome that presumption that she might be perceived as a burden.”   The government has estimated that Rachel might cost health and social services up to $5,000 a year more than a so–called normal child, but Jourdain pointed out that Barlagne has spent thousands of dollars in taxes and has built a viable business.   Jacqueline Roby, an Immigration Canada spokesperson, declined to comment on Barlagne’s case Tuesday. However, she did say that “such decisions are difficult for our department and are heartbreaking for our staff.”   “In general, Canada is hoping that more skilled workers, investors, entrepreneurs and other individuals will immigrate to Canada,” Roby explained in an e–mail.   “Nonetheless, it is also the goal of Citizenship and Immigration Canada to maintain an appropriate balance between welcoming new members into Canadian society while protecting our publicly funded health and social services, including the potential impact on waiting lists.”

Source: http://www.canada.com

Equal insurance benefits for differently-abled

Ministry of Communication and Information Technology would take a decision shortly with regard to the extra premium paid by the disabled employees

New Delhi: The Central Government Wednesday informed the Delhi High Court that equal benefits for postal life insurance will be provided to the differently-abled government employees with a maximum limit of Rs 5,00,000.  Counsel for the Ministry of Communication and Information Technology informed the court that a decision has already been taken by the Department of Posts to give equal treatment to the differently-abled government employees.  A division bench of Chief Justice Ajit Prakash Shah and Justice Rajiv Sahai Endlaw was hearing a public interest litigation filed by visually impaired Vikas Gupta, a professor, seeking parity with the general employees in terms of benefits.

Gupta alleged discrimination by the government with the disabled employees in terms of conferred benefits. His counsel Pankaj Sinha said the disabled employees were asked to pay extra premium in terms of the policy.  He submitted that according to the insurance policy, employees can avail a maximum of Rs five lakh and minimum of Rs10,000 sum insured, whereas the differently-abled employees were getting merely Rs one lakh.  The government’s counsel said the department would take a decision shortly with regard to the extra premium paid by the disabled employees.  The court then fixed the case for further hearing January 20 and directed the government to file a detailed affidavit. 

Igovernment

“Mental illness is not a disability, it is a disease”: J.P. Gadkari

J Gadkari

As the cry to include mental illness in the National Trust Act gets louder, organizations working with mental retardation, autism and cerebral palsy, etc. are vehemently opposing it. In an interview with Dorodi Sharma of D.N.I.S., J.P. Gadkari, President, Parivaar, the parents’ body for intellectually disabled people, gets candid on why they do not want mental illness in the National Trust Act.

D.N.I.S.: There is a huge debate in the disability sector on whether there should be four different laws on disabilities or one comprehensive law. What are your views on this?

J.P. Gadkari: A few back when a bureaucrat of the Ministry of Social Justice and Empowerment had posed a question to me as to why can’t we have a single comprehensive law dealing with all disabilities, I was somewhat taken aback by this poser. My apprehension was that under one such disability law, the persons with different categories of disabilities will be deprived of various benefits and facilities which they had won after a prolonged struggle. This apprehension was not without basis if you look at the bureaucratic attitudes displayed by those in power and administration from time to time.However, there is a paradigm change in the situation now. U.N.C.R.P.D. has also removed distinction among persons with disabilities by asserting that all persons with disabilities have legal capacity and equal rights like all other citizens. In this changed situation, there should not be any objection to a single comprehensive law with different chapters for all disabilities based on their specific needs and requirements. Also all existing facilities, concessions, etc., should be safeguarded and further improved upon in the light of the provisions of U.N.C.R.P.D.

D.N.I.S.: What do you have to say about the major debate to include mental illness in the National Trust Act?

J.P. Gadkari: We (Parivaar and myself personally) are firmly against the inclusion of mental illness in the National Trust Act. Because we believe that mental illness is NOT a disability, it is an illness or a disease. It can be treated and cured in most of the cases. It was a mistake to include it in the list of disabilities in the Disability Act of 1995. I want to emphasize here that National Trust Act is meant for persons with autism, cerebral palsy, mental retardation and multiple disabilities. These conditions are acquired from birth in most of the cases and are irreversible. It was enacted as a separate legislation for these four disabilities to fulfill their specific needs and requirements and provide permanent residential care, respite care, rehabilitation services and family support programmes. For the mentally ill there is a separate legislation – the Mental Health Act, 1987 which should not be considered as a disability legislation. It should be under the charge of the Health Ministry and the mental illness lobby can ask the Government to provide all facilities, which they require under this Act.

D.N.I.S.: There is a growing demand that people with mental illness and many other severe disabilities should also be covered under the various schemes of National Trust like Gharaunda and Niramaya. What is your take on this?

J.P. Gadkari: The severely disabled are already covered by the National Trust Act under the category of multiple disability. Other disabilities have adequate provisions under the Disability Act. As far as mental illness is concerned, I have already expressed my views.

D.N.I.S.: It is being alleged that organizations working for mental retardation, autism, cerebral palsy, etc. are putting pressure on the National Trust to not include other disabilities in general and mental illness in particular under the National Trust Act. What do you have to say on this?

J.P. Gadkari: It is patently and totally a false allegation that organizations working for mental retardation, autism, cerebral palsy etc., are putting pressure on the National Trust not to include other disabilities, mental illness, etc. under the National Trust Act. Infact, the National Trust through its website is conducting an opinion poll on these questions and everyone has a freedom of opinion to express his or her view.

Moreover, even if someone pressurizes the National Trust, they have no authority to change the law, include or exclude any of the disabilities from under their purview. That can only be done through an amendment to the present legislation by the Parliament.

D.N.I.S.: Recently, after much dithering, the Chandigarh administration has finally agreed to take care of an orphan mentally retarded girl who became pregnant after being raped at a government run shelter home. What are your views on the case?

J.P. Gadkari: It is a great victory for the entire disability sector which stood firmly by the girl. Since the crime was committed at a Government run sheltered home where the girl was staying, it was primarily the responsibility of the Chandigarh administration to take care of the victim and give her shelter, protection and all other facilities to take care of her advancing pregnancy and the forthcoming birth of the child. However, the administration wanted to wash its hands off this responsibility. It was only because of the active intervention on the part of the Disabled Rights Group (D.R.G.) and the National Federation of Parents Associations – Parivaar that the Chandigarh administration was ultimately forced to assume its responsibility.

DNIS

Deciding who lives and who dies

QALY (Quality Adjusted Life Score) is the methodology used by the United Kingdom (UK) to determine whether or not an individual is eligible to receive treatment for an illness.  The formula reduces the decision making to a dollars and cents evaluation.  In short, if it costs too much, the patient is denied care.

Fortunately, we have not yet reached the point where our own health care is decided purely on the basis of cost.  Or have we?

As legislators and the public have debated health care reform, claims and counterclaims by each side that the other is trying to scare the public into supporting their position have only served to confuse the issue.  However, comments made by Robert Reich, former Labor Secretary in the Clinton administration, now an Obama economics advisor, are worth noting. While campaigning for the Democratic presidential nomination at the UC Berkeley campus in 2007, he said:

I’m so glad to see you, and I would like to be president. Let me tell you a few things on healthcare. Look, we are we have the only healthcare system in the world that is designed to avoid sick people. That’s true. And what I’m going to do is I am going to try to reorganize it to be more amenable to treating sick people, but that means you, particularly you young people, particularly you young healthy people, you are going to have to pay more.

And by the way, we are going to have to, if you are very old, we’re not going to give you all that technology and all those drugs for the last couple of years of your life to keep you maybe going for another couple of months. It’s too expensive. So we’re going to let you die.

Also I’m going to use the bargaining leverage of the federal government in terms of Medicare, Medicaid—we already have a lot of bargaining leverage—to force drug companies and insurance companies and medical suppliers to reduce their costs. What that means, less innovation and that means less new products and less new drugs on the market which means you are probably not going to live much longer than your parents. Thank you.

Secretary Reich’s honesty is refreshing.  However, since honesty and transparency are hardly hallmarks of the Obama administration and Congress, we are forced to read between the lines in an effort to determine their true intent for reforming America’s health care system. Is it now the prevailing attitude that the government intends to let old people die because caring for them is too costly? The Brits’ QALY system is used to make life and death decisions about which patients will receive care or medicines.  The decision-making process is reduced to a formula for rationing health care based on age and the estimated costs of providing medical treatment and/or services, including prescription drugs.  (see http://www.york.ac.uk/inst/che/pdf/mathprog.pdf).

David Lee, a GE health economist, explained QALY as “…Quality adjusted life year, a year of life adjusted for its quality or its value.  A year in perfect health is considered equal to 1.0 QALY.  The value of a year in ill health would be discounted.  For example, a year bedridden might have a value equal to 0.5 QALY…We try and evaluate benefits and costs.  The way we measure that is a QALY, quality adjusted life year…We try to figure out what the QALY for certain technologies are. Is the gain in QALYs to the gain in costs worth it? The UK has something like £30,000 per QALY.  If the technology can deliver at less than that they’ll pay for it, it it’s more than that they won’t…What it’s telling technology developers is that if you’ve got a high cost with low medical benefit product your chances of getting into market are lower.  If you’re a cancer patient that stands to benefit from an additional three months of life that will cost the NHS (National Health Service) $70k is it worth it or not?”

This places a monetary value on human life. Decisions are made based on life expectancy.  If a particular treatment isn’t determined to be worth the cost, care is denied.  The rationale is that, while these may be difficult decisions to make, they are necessary. The thinking is that there has to be some way to measure costs in order to keep them from getting completely out of control. On the surface, that may make sense, unless, of course, you’re the one who needs the treatment.

Once again, the admonition, “be careful what you wish for,” applies.

In a society that bases life and death decisions on cost, such as the QALY system in Great Britain, it’s easy to see how it’s possible to deny health care to people who have the potential for great accomplishments.

For example, Helen Keller, who was born blind and deaf, through the patience and perseverance of her nurse and companion, ultimately became a world renown figure for her accomplishments in helping the handicapped.  However, my guess is that if she were born at a time when the health care industry was making cost-based decisions about who should live or die, she would not have been spared.  She has been quoted as saying, “I dreamt of heaven the other night, and the pearly gates swung wide. An angel with halo bright, ushered me inside. And there to my astonishment, stood folks I’d judged and labeled as quite ‘unfit,’ of ‘little worth,’  and ‘spiritually disabled.’ Indignant words rose to my lips, but NEVER were set free, for EVERY face showed stunned surprise, not ONE expected Me!”

Another person who probably would not be with us today when the health care system restricts access on the basis of cost is one of world’s greatest physicists, Stephen Hawking (1942-).  Hawking has suffered for approximately 40 years with ALS (amyotrophic lateral sclerosis), more commonly known as Lou Gehrig’s Disease.  The list of his accomplishments is too long to detail here, but he has authored a number of important contributions to the fields of cosmology and quantum gravity, including “black holes.”  Hawking developed ALS in his youth, while attending Cambridge, and has become increasingly paralyzed over the years, to the point that today he is almost completely immobile and can no longer speak. He has been quoted as saying, “It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly. People won’t have time for you if you are always angry or complaining.”

If the British QALY system for evaluating the worth of individuals had existed at the time Stephen Hawking first became paralyzed, would he have received the care and support that has kept him alive for the past 40 or 50 years, or would the cost of his care resulted in the conclusion that it was simply too expensive?

There is a long list of people who have made significant contributions to society and who might well have been denied health care on the basis of cost under the British QALY system or a similar policy that could potentially become the method for health care decision-making in America under the type of health care reform that the Obama administration has been pushing.  Following are just some examples:

  • Christopher Reeve (1952-2004), actor: Was crippled as a result of a horse-riding injury and dedicated the remaining years of his life attempting to harness the power of medical research to enable people with spinal cord injuries to recover and walk again.
  • Ray Charles (1930-2004), musician: Became blind at age seven, learned to play the piano and went on to be one of America’s greatest entertainers.
  • Jose Feliciano (1950-), Stevie Wonder (1950-) and Ronnie Milsap (1945-), composers and musicians: Were all born blind and overcame their handicaps to become leading song writers and entertainers.
  • Franklin Delano Roosevelt (1882-1945), U.S. President 1933-1945: suffered with Polio, which he contracted in 1921.
  • Louis Braille (1809-1852), inventor of the Braille System of reading and writing.  Became blind at age 3 as a result of an accident.
  • Anne McDonald (1961-), Australian author and activist for the rights of people with communication disability. She developed cerebral palsy as a result of a birth injury. Diagnosed as having severe intellectual disability at the age of three she was placed in an Australian government institution for people with severe disabilities and lived there without education or therapy for eleven years. Anne wrote her story in Annie’s Coming Out, a book she co-authored with Rosemary Crossley in 1980 (the film Annie’s Coming Out based on the book won several Australian Film Institute awards and was released in the U.S. under the title Test of Love).
  • Hubert H. Humphrey (1911-1978), two-term Vice President of the U.S. and U.S. Senator, is credited with saying: “The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled.”

Important words everyone should keep in mind during the current debate about reforming America’s health care system.  If the changes lead to health care rationing and decision making about who lives and who dies based on monetary considerations, we will not have moved forward but backward in our quest for fairness and equity.

Comments and observations about disabilities that provide us with revealing insights:

  • Death is no more than passing from one room into another. But there’s a difference for me, you know. Because in that other room I shall be able to see…No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit…”I also dislike people who try to talk down to my understanding. They are like people who when walking with you try to shorten their steps to suit yours; the hypocrisy in both cases is equally exasperating.” – Helen Keller (1880-1968), born blind and deaf.
  • “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus–the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.” – Helen Keller
  • “Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.” – Helen Keller
  • “Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.” – Lawrence Bixby, author of over 40 books.
  • “We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don’t see a cripple. I haven’t met anyone yet who isn’t handicapped in some way. So what’s the big deal? Don’t hide your deformity. Wear it like a Purple Heart.” – Georgiann Baldino, author, co-founder of cancer support group.
  • “I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a man pretty much at his own rating. If he permits his loss to make him embarrassed and apologetic, he will draw embarrassment from others. But if he gains his own respect, the respect of those around him comes easily.” – Alexander de Seversky (1894-1974), aviation pioneer.
  • “But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?” – Lois McMaster Bujold (1949-), science fiction writer.
    “The healthy and strong individual is the one who asks for help when he needs it. Whether he’s got an abscess on his knee or in his soul.” – Rona Barrett (1936-), Hollywood columnist, author, TV
  • “Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” – Neil Marcus (1954-), poet, playwright, disabled from age eight.
  • “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.” – Susan Wendell, Ph.D., feminist author, suffers with chronic fatigue syndrome.
  • “For me, the wheelchair symbolizes disability in a way a cane does not.” – Annette Funicello (1942-), actress, suffers with multiple sclerosis.
  • “A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.” – William Arthur Ward (1921-1994), author, poet, columnist.
  • “It (hepatitis C) will kill four times as many Americans as AIDS will over the next decade. I feel that whatever kind of disability God has given me, as an entertainer and as a public figure, it is so I can be a representative for others.” – Naomi Judd (1946-), singer, entertainer, mother of actress Ashley Judd and singer Wynonna, suffered with hepatitis C.
  • “Americans believe that people should work hard and get ahead on their own, but when disaster strikes and they need help with retirement or disability, Americans as a whole should come to their aid.” – Jacob Hacker, Ph.D. (1971-), professor of Political Science, UC Berkeley.
  • “Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” – Martina Navratilova (1956-), world champion tennis player.
  • “Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” – William J. Brennan, Jr. (1906-1997), Associate Justice of U.S. Supreme Court.
  • “The only disability in life is a bad attitude.” – Scott Hamilton (1958-), American figure skater, four time Olympic champion.
  • “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.” – Susan Boyle (1961-), Scottish singer.
  • “It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid.” – Susan Hampshire (1937-), English actress, TV star. “It was ability that mattered, not disability, which is a word I’m not crazy about using.” – Marlee Matlin (1965-), American actress, deaf (from 18 months of age)

© 2009 Harris R. Sherline, All Rights Reserved

Read more of Harris Sherline’s commentaries on his blog at “www.opinionfest.com

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