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We’ve Been Trapped Inside a Bad Health Care System So Long, We Don’t Even Know How Much We’re Missing June 26, 2009

Posted by rogerhollander in Canada, Health.
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By Sara Robinson, Campaign for America’s Future. Posted June 26, 2009.

www.alternet.org

Our current system has robbed us of the chance to save, educate ourselves, see the world and live to a robust old age.

Sometimes, when you’re up to your chin in alligators, it’s hard to focus on the fact that there’s a big, broad, alligator-free world waiting somewhere out there, beyond the edge of the swamp.

In this case, it’s hard for most Americans to even imagine that nobody in the rest of the developed world lives this way. We’ve been living inside the restrictions and making the trade-offs required to hang onto our all-important health care coverage for so long that we don’t even realize that we’re cutting those deals, or what we’re giving up, or how thoroughly those choices have come to dominate and limit our lives.

If you’re an American under 40, you can’t remember a time that the health care system didn’t work this way — or that keeping coverage wasn’t a dominant factor in making your life choices. If you’re older than that, the memory of another, happier era beyond the swamp is dim, and fading fast.

This was one of the things that struck me hardest when I arrived in Canada five years ago. The swamp-blindness was so dark and deep that it took a while to adjust to a world without alligators. It’s almost impossible to describe to folks back home how different life is when health insurance simply doesn’t factor at all into how you choose to live your life. There’s almost no language for it. Rather than even attempt it, I sometimes just ask my American friends and relatives to open up their imaginations, and answer the question for themselves:

  • How would your life be different if you never had to worry about getting, keeping, or affording health care again?
  • What other choices might you have made?
  • Where else would you be right now?
  • How would it change your plans for the future?

I’ve seen people reduced to tears of rage and frustration by these questions. When you really stop and think about it — pause for a few minutes to take it all in, past, present, and future — it becomes clear that the full absurdity and the sheer enormity of the sacrifices we have to make for an almighty health care card are the greatest obstacle to life, liberty and the pursuit of happiness that most of us are burdened with today.

Polls say most Americans who have health care are satisfied with it. But nobody ever asks them if they’re satisfied with what they’ve had to do to get it, keep it, or afford it.

What would you do differently? I watch my Canadian neighbors live their lives, and the world beyond the swamp comes into sharp and stunning focus.

My neighbors go to the doctor when they need to — and often, when they don’t. If they’re just feeling funky for a day or two, they go. If the splinter is too big to handle with a needle, they go. Anything goes a little bit sideways — they go.

By American standards, they’re probably overusing the system. (My husband once asked an employee who was nursing a cough, “Have you seen a doctor about that?” The guy just looked at him, confused. Of course he’d seen a doctor. Up here, only an American would ask such a stupid question.)

But the upshot is that the small symptoms of really big things — little lumps, creeping blood pressure, wounds that don’t heal right, coughs that don’t go away — are caught and diagnosed early in a GP’s office, instead of months or years down the road in a full-blown crisis at the ER, which is now the American way. And this is central to cost containment: getting emergent problems calmly headed off right away in a $30 office visit is a lot more cost-effective than having to deal with the full catastrophe later on in a $3,000 emergency-room drama scene. And it allows people to maintain their good health through the years, instead of delaying treatment until it’s too late to recover it and permanent damage is done.

My neighbors heal, recover, and go on with their lives. The U.S. disability rate last year was 19.1 percent, and rising fast. In Canada, it’s 14.3 percent — and Statistics Canada believes that the only reason their stats are creeping up these days is that people who once hid their disabilities are now more willing to admit them.

That disability rate affects the country’s economic competitiveness. Americans just don’t have the time or money to spend on a proper recovery after a major event, or get the full course of treatment that a chronic condition requires to be truly well-managed. Fearing for our income or our jobs, we hurry back to work too soon. Our insurance doesn’t cover necessary follow-up therapies, so things may not heal thoroughly or properly. We can’t afford the drugs, so we cut the pills in half, or stop taking them entirely.

The result is that too many of us end up far more impaired than we need to be — and may, in fact, never be quite right again. Deferred maintenance — which is what this is — takes a ferocious toll on the American workforce, which is now being forced to compete with workers around the world who get better care, make better recoveries, and are able to return to work at full strength.

My neighbors start small businesses. Americans routinely stay chained to jobs they hate because they can’t afford to lose coverage. Canada has an exuberant entrepreneurial culture, fueled by favorable tax structures for small business and a preference for Main Streets over malls. Canadians may bet the house and the kids’ college funds on a new venture; but they never think twice about whether or not they can afford to leave BigCo because they’ll lose their insurance, or what will happen to the new business if they get hit by a delivery truck, or how they’ll afford some kind of minimal coverage for their new employees. Unburdened by health care costs or concerns, their ventures are far more likely to thrive.

My neighbors go back to school. Low-cost government-subsidized universities combined with assured health care make it easy for people to make mid-course career adjustments, pursue their passions, and expand their horizons. The upshot is a better-educated, more capable workforce that’s constantly improving its skills.

My neighbors quit jobs they hate. “Take this job and shove it” is a lot easier — and sweeter — when your boss isn’t holding an almighty health care card over your head. Bosses know this, too, and working conditions are often better as a result.

My neighbors stay home with their kids. They can afford to do that, because they’re not wholly dependent on whichever breadwinner can manage to find a job with a decent health care plan.

My neighbors invest. They’ve got stable household budgets that aren’t being thrown off by surprise health events. Because Canada doesn’t have a mortgage interest deduction, most Canadians reduce interest costs by taking out 10- or 15-year mortgages. The payments really squeeze the family budget for that decade — but by their 40s a lot of them own their homes outright, something most Americans will never achieve. Home ownership, college savings and retirement funds are all big-money investments that you simply can’t commit to if you’re liable to be hit with five-figure medical bills at any moment.

My neighbors travel. Americans don’t get vacation time; and when they do get it, they tend to stay in-country. A lot of Canadians take three weeks off in the winter to go somewhere fabulous and warm (understandable, given the climate). The sheer variety of these escapes boggles me yet: They fly off to build schools in Guatemala, or take holiday jobs in New Zealand, or learn French in Morocco. Even the guy who paints my house can afford to do this, because he’s not spending half his annual income on health care premiums. That $15K-a-year savings will buy a whole lot of margaritas in Cancun.

The result is a population with broad global awareness, and extensive global ties — a necessary thing for a country whose economy depends completely on trade. And it may be an important factor in keeping Canada progressive. According to Diana Kerry, who ran her brother John’s overseas campaign in 2004, Americans who own passports vote Democratic three to one. So travel makes you liberal. Who knew?

My neighbors seldom go bankrupt. The Canadian bankruptcy rate has soared in the past year to 4.3 per thousand. In the U.S., it’s 11.1 per thousand. The entire difference between these two figures is accounted for by the fact that 62 percent of all U.S. bankruptcies were driven at least in part by medical expenses.

But tidy numbers like this elide a harder reality: Bankruptcy doesn’t just cost us financially. It also destroys the foundations of our social capital. When the house, the dreams, and the future are gone, very often the marriage is the next thing that goes, too. Bankruptcy travels in close company with domestic trouble, divorce, drug use, homelessness, and broken families. (After medical-bill refugees, the second most common people in bankruptcy courts are recently divorced women.) If, as conservatives like to remind us, the family is the basic unit of civilization, then our health care system is directly making its profits by pulling down our social foundations — and ultimately undermining our ability to hold our civilization together.

My neighbors have never seen anyone die because they didn’t have health care. With 22,000 Americans dying every year due to a lack of health insurance — that’s one every 24 minutes — there aren’t many of us who don’t know someone who lost a loved one because they couldn’t get the treatment they needed. (For me, it was my father.)

But when I share this factoid with Canadians, they invariably do a long double take. They lean back, squint, stare, and pause to reassess my credibility (if not my sanity). It’s literally unbelievable. They can’t even process it. I must be making it up, or at least exaggerating. It’s just beyond the realm of imagining that a rich nation like America would let that kind of thing happen — let alone let it happen sixty times a day, for years on end.

And yet, they know things are bad down here, because everybody who goes South buys travel insurance before they cross the border. Everybody has heard scary stories about people who got sick or hurt and ended up in an American ER with a five-figure bill to pay. It’s just a stupid risk, and they’re not willing to take it.

What would you have done differently if you’d never had to worry about health insurance? How would life be different now? How would it change your plans for the future?

Go ahead. Think about it. Let yourself get good and angry. The current system has robbed an entire generation of Americans of their full potential. It has made us serfs. It has narrowed our horizons. It has undermined our families and communities. It has deprived us of the chance to save, to own a home, to educate ourselves and our children, to see the world, to retire in comfort, and to live to a healthy and robust old age.

It has left us in this swamp, chin-deep in alligators. And the first step in getting back out is getting very clear in our own minds that there are other places where people don’t live this way — and then angry enough to lean on our leaders, and make it just as clear to them that we don’t intend to live like this any more, either.

Your representatives need to hear from you. Today.

Because your future is still out there — and the most important thing you need to get there is a health care plan nobody can ever take away.

 Sara Robinson is a Fellow at the Campaign for America’s Future, and a consulting partner with the Cognitive Policy Works in Seattle. One of the few trained social futurists in North America, she has blogged on authoritarian and extremist movements at Orcinus since 2006, and is a founding member of Group News Blog.

Bigotry toward LGBT individuals February 22, 2009

Posted by rogerhollander in Art, Literature and Culture, Human Rights.
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http://thetroublewithjerry.net/jerrys-defamatory-remarks/jerry-lgbt-quotes

In October 2008, while speaking with a journalist from Channel Ten News in Australia, Lewis was asked “What do you think of cricket?” His response was, “Oh cricket is a fag’s game! What are you, nuts?” Lewis then proceeded to flounce about, using camp, effeminate gestures, pretending to hold a bat with a limp wrist, squealing in a high pitched voice “Ah! The ball is coming towards me!”

This wasn’t the first time Lewis got into trouble making gay slurs. In 2007, Lewis was goofing around and dodging his cameraman during the 18th hour of the annual Muscular Dystrophy Association telethon, when he went into a ramble about imaginary family members.

“Oh, your family has come to see you,” he said, speaking to the camera and gesturing toward thin air.

“You remember Bart, your older son,” he said, and motioning toward another unseen character, “Jesse, the illiterate fag.

“No,” Lewis said, stopping himself before continuing.

The comment soon drew considerable condemnation a variety of groups including the Gay and Lesbian Alliance Against Defamation (GLAAD).

“Jerry Lewis’ on-air use of this kind of anti-gay slur is simply unacceptable,” GLAAD President Neil Giuliano said in a statement, adding that the comic’s remark “feeds a climate of hatred and intolerance” that could incite anti-gay violence.

GLAAD urged Lewis to apologize for the comment and asked the entertainer to meet with members of the group “to help him understand why these words are so hurtful.”

Under pressure from telethon organizers, Lewis later issued a statement saying he was sorry “to anyone who was offended.”

I guess we needn’t concern ourselves with anyone who wasn’t.

Lewis’ defamatory public statements make it clear that he lacks the kind of character and integrity the Academy is committed to honoring. Recognizing Lewis with this honor is an affront to true humanitarians, to the Academy and to the people Lewis has harmed..   Members of the disability community, and numerous allied individuals and organizations oppose awarding Lewis this honor.

Please join us.

Creature Comforts January 5, 2009

Posted by rogerhollander in Human Rights.
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It’s no longer just guide dogs for blind people. Service animals now include monkeys for quadriplegics, parrots for psychotics and at least one assistance duck. Should the law recognize all of them?
New York Times Magazine, January 4, 2009

ON HALLOWEEN NIGHT IN A SUBURB of Albany, a group of children dressed as vampires and witches ran past a middle-aged woman in plain clothes. She gripped a leather harness — like the kind used for Seeing Eye dogs — which was attached to a small, fuzzy black-and-white horse barely tall enough to reach the woman’s hip.

Dilip Vishwanat/Getty Images, for The New York Times

Sadie talks Jim Eggers down when he’s on the verge of a psychotic episode.

 

Jeff Riedel for The New York Times

Ann Edie and her guide miniature horse, Panda, checking out at Staples.

“Cool costume,” one of the kids said, nodding toward her.

But she wasn’t dressed up. The woman, Ann Edie, was simply blind and out for an evening walk with Panda, her guide miniature horse.

There are no sidewalks in Edie’s neighborhood, so Panda led her along the street’s edge, maneuvering around drainage ditches, mailboxes and bags of raked leaves. At one point, Panda paused, waited for a car to pass, then veered into the road to avoid a group of children running toward them swinging glow sticks. She led Edie onto a lawn so she wouldn’t hit her head on the side mirror of a parked van, then to a traffic pole at a busy intersection, where she stopped and tapped her hoof. “Find the button,” Edie said. Panda raised her head inches from the pole so Edie could run her hand along Panda’s nose to find and press the “walk” signal button.

Edie isn’t the only blind person who uses a guide horse instead of a dog — there’s actually a Guide Horse Foundation that’s been around nearly a decade. The obvious question is, Why? In fact, Edie says, there are many reasons: miniature horses are mild-mannered, trainable and less threatening than large dogs. They’re naturally cautious and have exceptional vision, with eyes set far apart for nearly 360-degree range. Plus, they’re herd animals, so they instinctively synchronize their movements with others. But the biggest reason is age: miniature horses can live and work for more than 30 years. In that time, a blind person typically goes through five to seven guide dogs. That can be draining both emotionally and economically, because each one can cost up to $60,000 to breed, train and place in a home.

“Panda is almost 8 years old,” her trainer, Alexandra Kurland, told me. “If Panda were a dog, Ann would be thinking about retiring her soon and starting over, but their relationship is just getting started. They’re still improving their communication and learning to read each other’s bodies. It’s the difference between dating for a few years and being married so long you can finish each other’s sentences.”

Edie has nothing against service dogs — she has had several. One worked beautifully. Two didn’t — they dragged her across lawns chasing cats and squirrels, even pulled her into the street chasing dogs in passing cars. Edie doesn’t worry about those sorts of things with Panda because miniature horses are less aggressive. Still, she says, “I would never say to a blind person, ‘Run out and get yourself a guide horse,’ because there are definite limitations.” They eat far more often than dogs, and go to the bathroom about every two or three hours. (Yes, Panda is house-trained.) Plus, they can’t curl up in small places, which makes going to the movies or riding in airplanes a challenge. (When miniature horses fly, they stand in first class or bulkhead because they don’t fit in standard coach.)

What’s most striking about Edie and Panda is that after the initial shock of seeing a horse walk into a cafe, or ride in a car, watching them work together makes the idea of guide miniature horses seem utterly logical. Even normal. So normal, in fact, that people often find it hard to believe that the United States government is considering a proposal that would force Edie and many others like her to stop using their service animals. But that’s precisely what’s happening, because a growing number of people believe the world of service animals has gotten out of control: first it was guide dogs for the blind; now it’s monkeys for quadriplegia and agoraphobia, guide miniature horses, a goat for muscular dystrophy, a parrot for psychosis and any number of animals for anxiety, including cats, ferrets, pigs, at least one iguana and a duck. They’re all showing up in stores and in restaurants, which is perfectly legal because the Americans With Disabilities Act (A.D.A.) requires that service animals be allowed wherever their owners want to go.

Some people enjoy running into an occasional primate or farm animal while shopping. Many others don’t. This has resulted in a growing debate over how to handle these animals, as well as widespread suspicion that people are abusing the law to get special privileges for their pets. Increasingly, business owners, landlords and city officials are challenging the legitimacy of noncanine service animals and refusing to accommodate them. Animal owners are responding with lawsuits and complaints to the Department of Justice. This August, the Arizona Game and Fish Department ordered a woman to get rid of her chimpanzee, claiming that she brought it into the state illegally — she disputed this and sued for discrimination, arguing that it was a diabetes-assistance chimp trained to fetch sugar during hypoglycemic episodes.

Cases like this are raising questions about where to draw the lines when it comes to the needs and rights of people who rely on these animals, of businesses obligated by law to accommodate them and of everyday civilians who — because of health and safety concerns or just general discomfort — don’t want monkeys or ducks walking the aisles of their grocery stores.

A few months ago, in a cafe in St. Louis, I met a man named Jim Eggers, who uses an assistance parrot, Sadie, to help control his psychotic tendencies. Eggers looks like a man who has been fighting his whole life. He is muscular, with a buzz cut, several knocked-out teeth and many scars, including one that runs ear-to-chin from surgery to repair a broken jaw. Eggers avoids eye contact in public — he walks fast down streets and through stores staring at the ground, jaw clenched. “I have bipolar disorder with psychotic tendencies,” he told me as he sucked down a green-apple smoothie. “Homicidal feelings too.”

Eggers’s condition has landed him in court several times: a disturbing-the-peace charge for pouring scalding coffee onto a man under his apartment window who annoyed him; one-year probation for threatening to kill the archbishop of St. Louis because of news reports about church money and molestations by priests in other cities (which the archbishop had nothing to do with). In describing his condition, Eggers says it’s like when the Incredible Hulk changes from man to monster. His vision blurs, his body tingles and he can barely hear. According to his friend Larry Gower, who often serves as a public liaison for him, in those moments, Eggers gets extremely loud. They both agree that Sadie is one of the few things keeping Eggers from snapping.

Sadie rides around town on Eggers’s back in a bright purple backpack specially designed to hold her cage. When he gets upset, she talks him down, saying: “It’s O.K., Jim. Calm down, Jim. You’re all right, Jim. I’m here, Jim.” She somehow senses when he is getting agitated before he even knows it’s happening. “I still go off on people sometimes, but she makes sure it never escalates into a big problem,” he told me, grinning bashfully at Sadie. “Now when people make me mad I just give them the bird,” he said, pulling up his sleeve and flexing his biceps, which is covered with a large tattoo of Sadie.

Soon after what he calls “the Archbishop Incident,” Eggers got Sadie from a friend who owned a pet store. She’d been neglected by a previous owner and had torn out all her feathers, so Eggers nursed her back to health. He didn’t initially train her as a service animal, he says; she did that herself. When Eggers had episodes at home, he’d pace, holding his head and yelling: “It’s O.K., Jim! You’re all right, Jim! Calm down, Jim!” One day, Sadie started doing it, too. He soon realized that she calmed him better than he calmed himself. So he started rewarding her each time it happened. And he has had only one incident since: he dented a woman’s car with his fist on a day when he’d left Sadie at home.

 

 

Eggers didn’t think to use any special language to describe Sadie until he tried to take her on a bus and the driver said that only “service animals” were allowed. Eggers went home and looked up “service animal” online. “That’s when it all fell into place,” he told me. He learned that psychiatric service animals help their owners cope with things like medication side effects. Eggers takes heavy doses of antipsychotics that leave him in a fog most of the day. So he trained Sadie to alert him with a loud ringing noise if someone calls, or to yell “WHO’S THERE?” when anyone knocks on the door. If the fire alarm goes off, Sadie goes off. If Eggers leaves the faucet running, Sadie makes sounds like a waterfall until he turns it off.

Eggers got a service-animal bus pass for Sadie and began taking her everywhere. (He has special insulated cage panels to keep her warm in winter.) For years, few people objected. Then, in the spring of 2007, Eggers went to have his teeth cleaned at the St. Louis Community College dental-hygiene school, and officials there told him that Sadie wasn’t allowed inside because she posed a risk to public health and wasn’t really a service animal. “All I can say is, they were lucky I had Sadie with me to keep me calm when they said that,” Eggers told me.

He filed a complaint with the United States Department of Education’s Office of Civil Rights (O.C.R.), which initiated an investigation. Its conclusion: the school wrongfully denied access based on public-health concerns without assessing whether Sadie actually posed a risk. (Several top epidemiologists I interviewed for this article said that, on the whole, birds and miniature horses pose no more risk to human health than service dogs do.)

But Eggers is still fighting that fight. According to the O.C.R., the school “exceeded the boundaries of a permissible inquiry” by questioning Eggers about his disability. But that didn’t change the school’s conclusion: it labeled Sadie a mere “therapy animal.” If that label sticks, it will mean that Sadie isn’t covered by the federal law that protects service animals and guarantees them access to public places.

Stories like Eggers’s involve two questions that are often mistakenly treated as one. The first: What qualifies as a service animal? The second: Can any species be eligible?

There are two categories of animals that help people. “Therapy animals” (also known as “comfort animals”) have been used for decades in hospitals and homes for the elderly or disabled. Their job is essentially to be themselves — to let humans pet and play with them, which calms people, lowers their blood pressure and makes them feel better. There are also therapy horses, which people ride to help with balance and muscle building.

These animals are valuable, but they have no special legal rights because they aren’t considered service animals, the second category, which the A.D.A. defines as “any guide dog, signal dog or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair or fetching dropped items.”

Since the 1920s, when guide dogs first started working with blind World War I veterans, service animals have been trained to do everything from helping people balance on stairs to opening doors to calling 911. In the early ’80s, small capuchin monkeys started helping quadriplegics with basic day-to-day functions like eating and drinking, and there was no question about whether­ they counted as service animals. Things got more complicated in the ’90s, when “psychiatric service animals” started fetching pills and water, alerting owners to panic attacks and helping autistic children socialize.

 

 

The line between therapy animals and psychiatric service animals has always been blurry, because it usually comes down to varying definitions of the words “task” and “work” and whether something like actively soothing a person qualifies. That line got blurrier in 2003, when the Department of Transportation revised its internal policies regarding service animals on airplanes. It issued a statement saying that in recent years, “a wider variety of animals (e.g., cats, monkeys, etc.) have been individually trained to assist people with disabilities. Service animals also perform a much wider variety of functions than ever before.”

To keep up with these changes, the D.O.T.’s new guidelines said, “Animals that assist persons with disabilities by providing emotional support qualify as service animals.” They also said that any species could qualify and that these animals didn’t need special training, aside from basic obedience. The only thing required for a pet to fly with its owner instead of riding as cargo was documentation (like a letter from a doctor) saying the person needed emotional support from an animal. Legally speaking, the D.O.T.’s new policy applied only to airplanes — the A.D.A.’s definition of service animal stayed the same. But for those looking online to find out whether they could take their animals into stores and restaurants, the D.O.T.’s definition looked like official law, and people started acting accordingly.

Soon, a trend emerged: people with no visible disabilities were bringing what a New York Times article called “a veritable Noah’s Ark of support animals” into businesses, claiming that they were service animals. Business owners and their employees often couldn’t distinguish the genuine from the bogus. To protect the disabled from intrusive questions about their medical histories, the A.D.A. makes it illegal to ask what disorder an animal helps with. You also can’t ask for proof that a person is disabled or a demonstration of an animal’s “tasks.” There is no certification process for service animals (though there are Web sites where anyone can buy an official-looking card that says they have a certified service animal, no documentation required). The only questions businesses can ask are “Is that a trained service animal?” and “What task is it trained to do?”

If the person answers yes to the first and claims that the animal is, say, trained to alert him or her to a specific condition (like a seizure), additional questioning could end in a lawsuit. And in many cases, according to Joan Esnayra, founder of the Psychiatric Service Dog Society, the outcome of those lawsuits depends largely on the words people use to describe their animals. “If you say ‘comfort,’ ‘need’ or ‘emotional support,’ you’re out the door,” she says. “If you talk about what your animal does in terms of ‘tasks’ and ‘work,’ then you stand a chance.”

Case in point: When the dental school questioned Eggers about whether­ Sadie was a service animal, he said she kept him “calm.” If he had said that she alerts him to things like attacks and doorbells, his case might have been stronger.

According to Jennifer Mathis, an attorney at the Bazelon Center for Mental Health Law, “A lot of times when people with legitimate service animals lose these cases, it has to do with the fact that they don’t explain their service animals well.”

Rather than risk a lawsuit, many business owners simply allow the animals, even if they doubt their legitimacy. Then they complain to the Department of Justice that the A.D.A. is too broad in its definition of “service animal,” and too restrictive of businesses trying to protect themselves from people who fake it. Which many people do.

In October, a man in Portland, Ore., took his dog on a bus, claiming that it was a service animal. While getting off the bus, the dog killed another dog that was riding as a “comfort animal.” (In Portland, comfort animals are allowed on public transportation.) A few days later, an editorial appeared in The Oregonian with the headline “Take the Menagerie Off the Bus.” It opened with: “No offense, ferret lovers. … Your pet … may offer emotional support. But it shouldn’t be roaming the aisles of a … bus or train.” It argued that the story of the dead comfort dog was proof that people had stretched the legal definition of service animals to include a virtual zoo of animals.

 

 

Lex Frieden, a professor of health-information science at the University of Texas Health Science Center at Houston and a former director of the National Council on Disability, sees the issue differently. “People shouldn’t be able to carry their pets on a plane or into a restaurant claiming they’re service animals when they’re not,” he says. “But that has nothing to do with what species a service animal is.” The appropriate response in those situations isn’t a species ban, he says, but rather strict punishments for people who pose as disabled. “It’s fraud,” he points out, “and it results in increased scrutiny of people with legitimate disabilities.”

In June, in an effort to clarify the confusion surrounding service animals, the Department of Justice proposed new regulations to explicitly include psychiatric service and exclude comfort animals. This was part of a sweeping revision of the A.D.A. intended to increase protection and access for the disabled, which was widely applauded. But tucked into that proposal were a few lines that worry advocates and people with disabilities: the D.O.J. proposed limiting service animals to a “dog or other common domestic animal,” specifically excluding “wild animals (including nonhuman primates born in captivity), reptiles, rabbits, farm animals (including any breed of horse, miniature horse, pony, pig or goat), ferrets, amphibians and rodents.”

This summer, the D.O.J. held a public hearing in Washington and invited anyone who would be affected by the proposed changes to argue for or against them. Many pleaded their cases in person, others by letter. The arguments in favor of species restrictions came primarily from businesses concerned about having to alter facilities, rebuilding seating areas, say, to make room for miniature horses. Several service-animal organizations and people with disabilities argued that banning reptiles and insects was fine but that excluding miniature horses and primates simply went too far. In their defense, they cited things like dog allergies, the long life spans of several species and monkeys’ opposable thumbs. After considering the arguments, last month the D.O.J. submitted a final proposal to the Office of Management and Budget. Until there’s a ruling, neither office will comment on the issue or say whether the species restriction was removed or revised after the public hearings.

Jamie Hais, a spokeswoman for the D.O.J., said she couldn’t comment on why the department suggested the species restriction. But its proposal expressed concerns about public-health risks and said that when the original A.D.A. was written, without specifying species, “few anticipated” the variety of animals people would attempt to use.

“That’s simply not true,” says Frieden, who was an architect of the original A.D.A. While drafting the regulations, he said, Congressional staff members had long discussions about defining “service animal” and whether­ a trained pony could qualify. “There was general consensus that the issue revolved around the question of function, not form,” he says. “So, in fact, if that pony provided assistance to a person with a disability and enabled that person to pursue equal opportunity and nondiscrimination, then that pony could be regarded as a service animal.” They discussed the possibility of birds and snakes for psychiatric disorders, he said, but one of their biggest concerns was that the A.D.A. shouldn’t exclude service monkeys, which were already working with quadriplegics. Since then, however, monkeys have become the most contested assistance-animal species of all.

On a rainy day in November, I walked through a T. J. Maxx store in Springfield, Mo., with Debby Rose and Richard, her 25-pound bonnet macaque monkey — one of the most controversial service animals working today. Rose was wearing brown pants and a brown-and-gold-patterned shirt. Richard was wearing a brown long-sleeved polo over a white T-shirt with jeans and a tan vest that said “Please Don’t Pet Me I’m Working.” Richard stood in the child seat of Rose’s shopping cart, facing forward, bouncing up and down, smacking his lips and grinning as Rose pushed him down the aisles.

Richard is a hands-on shopper. If Rose pointed at a sweater or purse she liked, or a pair of shoes, his hand darted out to touch them. As we passed a pair of tan, fuzzy winter boots that Rose particularly liked, Richard leaned out of the cart and quickly licked one on its toe.

People stared as we walked. “Why do you have him?” they’d ask.

“He’s a service animal trained for my disability, kind of like a seizure-alert dog,” Rose told them, again and again.

“Can I pet him?”

“He doesn’t like to be touched,” she’d say, “but you can give him five.”

People raised their hands, and Richard gave them five.

 

 

That Rose isn’t bothered by people looking and asking questions is impressive, considering that she has agoraphobia and severe anxiety disorder with debilitating panic attacks. Until getting Richard four years ago, she required heavy doses of anti-anxiety drugs just to go out in public. “I couldn’t have come in this store before Richard, let alone handled all these people talking to me,” she said. “Now I like it.”

Rose adopted Richard in 2004; he was badly neglected and near death. She and two of her six children — whom she raised as a single mother — run an exotic-animal shelter. Rose says she believes that Richard was trained as a service animal for his previous owner, an elderly woman whose son gave Richard away when she died. He had been neutered, and his tail had been surgically removed. He’d also had his large and potentially dangerous canine teeth pulled, a procedure commonly done with service monkeys for safety (and often cited as one of several ethical concerns with using wild instead of domesticated species for such jobs).

As Richard returned to health, Rose realized that he had begun to recognize her panic attacks before she did. Her doctor suggested that she train him to help with her disorder, then wrote a letter approving of him as a service animal, saying that Richard was “a constructive way to avoid use of unnecessary medications.” Rose took that letter to the Springfield-Greene County Health Department, got permission for Richard to accompany her in public and has been drug-free ever since. She ordered a service-animal ID certificate online; she even got a restriction on her driver’s license saying that she can’t operate a car without a monkey present. Now he sits in her lap with a hand on the wheel while she drives, and she never leaves home without him.

But the number of places Rose and Richard can go is decreasing. In September 2006, after receiving complaints that Richard was sitting in highchairs in restaurants, touching silverware and going through a buffet line with Rose, the Health Department sent a letter to all local restaurants announcing that Richard was a risk to public health and not a legitimate service animal. It instructed businesses to refuse him access and to call the police if Rose protested. Businesses posted the letter on their doors and in their bathrooms; soon Cox College of Nursing and Health Sciences, where Rose was attending nursing school, refused Richard access, too. Stories­ started appearing about Rose and her monkey in the newspaper and on TV. “Suddenly,” she told me, “everyone knew I had a mental disorder.”

Rose dropped out of school and filed a lawsuit against her local Health Department, the nursing school, Wal-Mart and several other local businesses that had forbidden Richard access, saying that they violated the A.D.A. Kevin Gipson, director of the local Health Department, told me that he had asked Rose to show him what “tasks” Richard performed that would qualify him. “She couldn’t,” he said.

Defining “task” is often a point of contention in these cases, especially with psychiatric service animals, whose work generally can’t be demonstrated on command. Before going to T. J. Maxx, I saw Rose begin to panic while sitting in her lawyer’s office talking about her case. Her face flushed; her voice quivered. Richard, who had been dozing in the chair beside her, leapt onto her arm and began stroking her hair. He hugged her, rubbed her ear and cooed while she talked. She immediately calmed down. “He snaps me out of it before the attacks happen,” she said. “If they start at night, he’ll turn on the light and get me a bottle of water.”

For Gipson, that’s really beside the point. “Even if Richard is a legitimate service animal,” he told me, “if he poses a public-health risk, the A.D.A. says he can be excluded. And we believe primates pose a significant health risk.”

Rose says that Richard is perfectly safe and immaculately clean. She showers and blow-dries him every day and uses hand sanitizer on him regularly, and he always wears diapers. But that doesn’t impress the Health Department. Monkeys can carry viruses, like herpes B, which are essentially harmless to them but usually deadly to humans. Those viruses can be transmitted through saliva and other bodily fluids. In 1998, the Centers for Disease Control and Prevention published a study titled “B-Viruses From Pet Macaque Monkeys: An Emerging Threat in the United States?” saying that 80 to 90 percent of adult macaques like Richard carry herpes B. It’s possible to test them for viruses, which Rose does every year with Richard, but those tests often give false negatives. Plus, Gipson told me, “he could catch it any time from contact with other monkeys, which we know he’s had.” Five days before the Health Department banned Richard, a local newspaper ran pictures of him and several other monkeys hanging out at Rose’s family’s sanctuary.

According to Frederick Murphy, former head of viral pathology for the C.D.C. and co-discoverer of the Ebola virus, the threat that viruses from service monkeys present to humans is essentially unknown. There have been a few cases of primate-lab workers contracting herpes B from macaques — mostly from being bitten — but no cases of people being infected by service monkeys, which are usually capuchins.

The bigger concern, according to several experts, is potential aggression. “People think monkeys are cute and like humans, but they’re not,” says Laura Kahn, a public-health expert at the Woodrow Wilson School of Public and International Affairs at Princeton. “They’re wild animals, and they’re dangerous.”

Critics of noncanine service animals tend to focus on disease perhaps because that’s the only way to legally exclude any service animal under the current A.D.A. But on the whole, Bradford Smith, former director of the University of California Davis Veterinary Medical Teaching Hospital, says, “I would tend to think the disease argument is really a proxy for other concerns, like having to let any person who says their parrot or horse is a service animal enter into public areas.”

Rose’s case is sometimes held up as an example of why the A.D.A. should be rewritten to exclude primates as service animals. But in fact, Frieden says, it’s an example of how the original A.D.A. works well as it was written, since it allows broad use of service animals while still leaving room to protect the public health. “Some situations have to be dealt with on a case-by-base basis,” he says. “You can’t legislate fine lines — that’s just not a functional law.”

Frieden is very clear about his belief that it would be a huge loss if concerns about specific cases jeopardized the use of all noncanine service animals, especially the capuchin monkeys trained to help quadriplegics. The capuchins attend “monkey college” at Helping Hands, a nonprofit organization in Boston, where they fetch remote controls, put food in microwaves, open containers, vacuum floors and flip light switches, all in exchange for treats. Helping Hands capuchins are captive bred, which minimizes the risk of picking up diseases, and they’re provided specifically for in-home use. The proposed species restriction might make it impossible for people to transport capuchins or keep them in their homes because of zoning restrictions. The thought of this makes Helping Hands’s founder, M. J. Willard, shudder. “There ought to be a more nuanced way if somebody just thinks it through,” she says. “Even just minor requirements of verifying the legitimacy of a service animal would solve a lot of the current problem.”

Frieden agrees. He suggests that perhaps a national committee could be appointed to develop certification standards for all service animals as well as a formal process for preventing and punishing service-animal fraud. Doing so might solve part of the controversy, he says. But not all of it. Particularly when it comes to species questions.

“Many people try to make this issue black and white — this service animal is good; that one is bad — but that’s not possible, because disability extends through an enormous realm of human behavior and anatomy and human condition,” Frieden told me. In the end, according to him, the important thing to remember is this: “The public used to be put off by the very sight of a person with a disability. That state of mind delayed productivity and caused irreparable harm to many people for decades. We’ve now said, by law, that regardless of their disability, people must have equal opportunity, and we can’t discriminate. In order to seek the opportunities and benefits they have as citizens, if a person needs a cane, they should be able to use one. If they need a wheelchair, a dog, a miniature horse or any other device or animal, society has to accept that, because those things are, in fact, part of that person.”

Rebecca Skloot teaches nonfiction at the University of Memphis. Her first book, “The Immortal Life of Henrietta Lacks,” will be published by Crown in spring 2010.

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This article has been revised to reflect the following correction:

Correction: January 4, 2009
An article on Page 34 of The Times Magazine this weekend about animals that help disabled people misidentifies the location of the Woodrow Wilson School of Public and International Affairs, one of whose public-health experts commented on the topic. It is at Princeton, not Harvard.

 

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