The problem with the M-word and the media visibility of little people

From Lynn Harris at Salon.com. Pictured are the Roloff family of TLC's "Little People, Big World" and actor Peter Dinklage.

Jimmy and Darlene Korpai of Crawford, N.Y., will always remember the night they fired Donald Trump's "Celebrity Apprentice."

It was this past April, and the contestants' task was to create a viral video promoting All detergent.

"I got a bad feeling as soon as I heard them say 'small and mighty,'" says Jimmy, referring to All's line of highly concentrated soaps.

His instincts were dead on. "What about if we use little people and let them wash themselves in All detergent in the bathtub ... and you hang them out to dry?" suggested superstar running back Herschel Walker. Joan Rivers: "We can hang them out on my terrace."

The resulting video, starring motorcycle maven Jesse James and titled "Jesse James Gets Dirty With Midgets," features three very short actors clad in All-bottle blue, whose yelling and hose-squirting and zippy fast-motion action (including an unexplained mallet to James' gut) leave his T-shirt sparkling clean.

"Imagine if I said what Herschel Walker did about a black person," says Jimmy, 37, a sculptor and designer. But it wasn't that, or the video, or the peppering of the episode with the word "midget," which -- as even some on the show noted -- is considered derogatory by people with dwarfism, that left the Korpais truly aghast. More than anything, it was this assurance, made to the group by James: "[Little people] know that people point and laugh at them and they are comfortable within themselves and they have fun right back."

"Here is a celebrity," Jimmy says, "telling people that it's all right to point and laugh at our daughter."

The Korpais are the parents of Hailey, 3, who has achondroplasia, the most common form of dwarfism. (The standard definition of dwarfism includes anyone 4-foot-10 or smaller whose stature is attributed to one of at least 200 medical conditions that cause dwarfism.)

Like approximately 80 percent of parents of children with dwarfism, Jimmy and Darlene are of average stature. Their efforts to educate -- and reassure -- themselves about Hailey's condition brought them to their local chapter of Little People of America, a 5,000-member organization offering medical information, social support and, increasingly, community outreach and political advocacy for dwarfs and their families. (Past and present agenda items: outlaw "dwarf tossing," lower the height of ATMs, raise awareness about advances in genetics -- or, depending on one's view, eugenics.) The Korpais soon found themselves determined to help alter the culture into which Hailey had been born, which, for all its advances in civility -- when was the last time you heard somebody called "a cripple"? -- still finds "midgets" fair game for ridicule. The two have spearheaded an effort on the part of LPA to file a formal complaint about "Celebrity Apprentice" with the FCC. Says Darlene, 36, who raises Hailey full-time: "In this p.c. world, I don't see why we're the last group it's OK to make fun of."

Which brings us to right now -- and to what dwarfism expert and LPA stalwart Dr. Betty M. Adelson calls a "historic moment" for people with profound short stature. (Note: Adelson is my mother-in-law; my sister-in-law, Anna, 34, has achondroplasia.)

Dwarfs have weathered "Under the Rainbow" and the Oompa Loompas and approximately 158 sightings of "the plane, the plane" -- not to mention Howard Stern's "Eric the Midget" and Pedro Martinez's "lucky" one: roles and gags in which the whole point, and source of matter-of-taste hilarity, is that the guy is, you know, really short. That's not going away soon.

But there's been progress. In "The Station Agent," actor Peter Dinklage played a fully realized leading character who was, you know, also short. LPA considered Fox's "The Littlest Groom" "equal-opportunity embarrassment" for all involved; plus, hey, lots of people loved Charla on "The Amazing Race."

Today, the best-known, most-visible dwarfs on TV are not blue-suited scrubbing bubbles but members of the Roloff family, whose real lives are chronicled -- sensitively and in-depth, by most accounts -- on one of TLC's most popular shows, "Little People, Big World." (There's also "The Little Couple," and the frequently aired one-off "Little Parents, Big Pregnancy," both of which are doing well.)

That's "historic" on its own. But the dwarfism community itself, insofar as it's represented by LPA, has also been transformed. Back in the day, Adelson says, "dwarfs kept very busy trying to show they were like everyone else." Not so with the "new generation": media- and Internet-savvy dwarfs and their parents, like the Korpais, who grew up watching other disability and rights groups form their identities and stake their claims. So now, more than ever before, LPA is coming out swinging.

The group has recently taken two proactive and unprecedented steps: disinviting the Radio City Christmas Spectacular's "elf" recruiters from LPA's annual national conference, held last week in Brooklyn, N.Y. -- and announcing at the conference, officially, and once and for all, that the word "midget" is anathema.

"When referring to people of short stature, Little People of America will use the terms 'dwarf,' 'little person,' 'person with dwarfism,' or 'person of short stature,'" reads the group's statement. "In addition to promoting positive language around people of short stature, Little People of America will ... spread awareness to prevent use of the word 'midget,' considered offensive by Little People of America."

I attended the conference as a reporter. Over and over, the participants I interviewed -- including one black mother of a toddler with achondroplasia -- made the same analogy: The "M-word" should be considered as unacceptable as the "N-word."

Perhaps now you're reminded of the "R-word": that is, last summer's clamorous -- and controversial -- protest of the use of the word "retard" in the movie "Tropic Thunder." Then and now with the LPA, it has been incorrectly reported that advocates have demanded an all-out "ban" on the word in question. (That wouldn't fly with the FCC, anyway, whose policing of content is actually pretty limited, and which doesn't expressly ban words at all -- not even the so-called seven dirty ones.) The stated goal of both campaigns: open eyes, boost sensitivity, get folks to think twice.

But -- snarkosphere notwithstanding -- there's reason to believe that the M-word campaign might be welcomed a bit more graciously outside the disability community than was its predecessor. While many of us embrace and defend "retard" and "retarded" as pungent synonyms for "dumbass," many also use the word "midget" as simple description. "Many people don't realize the word 'midget' is offensive in the first place," says Gary Arnold, 38, vice-president of public relations for LPA (and public relations coordinator for a disability rights and service group in Chicago).

People, that is, like the Gray Lady herself. A March article buried in the Times' business section mentioned, in passing, a famous photo showing "J. P. Morgan Jr. with a midget who had been plopped in his lap by an opportunistic publicist." Outcry from dwarfs and their families -- including detailed historical background provided by Adelson, author of two authoritative books about dwarfism -- had this notable result: a rare addition to the New York Times' style manual. (Changes are made only five or six times a year, according to a spokesperson.) As public editor Clark Hoyt wrote in April, the new entry states that people of unusually (and medically) short stature should be referred to as dwarfs, not "midgets."

Still, LPA's ousting of Radio City and its anti-"midget" campaign are -- like the history and usage of the word itself -- not without complication or controversy.

Etymologically, at least, it's easy to explain the word's offense: It's derived from "midge," a type of tiny fly that may bite or spread disease. But part of the word "midget's" P.R. problem is that the term (like "retarded") was once used comfortably, particularly to distinguish people who were small but proportionate (usually as the result of a growth hormone deficiency) from those who were small but disproportionate (usually due to one of various bone disorders, such as achondroplasia). It was also once the term of choice for dwarfs in the entertainment world. In fact, LPA itself was founded in 1957 by actor Billy Barty and about 20 colleagues as "Midgets of America." The name was changed three years later. Even, or especially, as more diverse (and "respectable") professions have opened up to people with dwarfism, its vestigial freak-show connotation has remained, and has come to rankle.

Would people with dwarfism ever seek to sap the word's power by reclaiming it, as the gay rights movement has done with "fag" and "queer"? Some think it's way too soon; some think it's way too hurtful. Says Adelson: "I don't think they'll ever want it back."

What about the word "dwarf"? Given its association with "gnome," "elf" -- and, you know, Dopey, Grumpy and Sleepy -- it's not everyone's first choice. (Barbara Spiegel, 35, of South Portland, Maine, has achondroplasia and two young daughters, one adopted, with the same diagnosis. Recently the elder, Alexandra, asked how she should describe herself to her new kindergarten classmates this fall. "You can say you're a dwarf," replied Spiegel. Alexandra: "But I'm not make-believe!") Still, since "dwarf" is an accurate term for a medical diagnosis, it's not considered offensive, at least in the United States.

Not everyone is a fan of "little person," either, which to some sounds mythical and munchkin-y. On the upside -- as Billy Barty himself was said to point out -- the term does contain the word "person." According to Adelson, the acronym "LP" (often used by members of LPA in place of "little people") is the neologism of choice in the U.S., precisely because it carries so little historical baggage. ("Most individuals," she adds, "prefer simply to be called by their given names.")

Even if LPs could ban the word "midget" -- or find the perfect term to describe themselves -- neither mockery nor bias nor movies like this one would magically vanish overnight. What would really help stop the laughing and pointing at the "midget" on the street? Advocates within LPA agree: the understanding that people with dwarfism are actual humans, not mythical creatures or comic relief. It's an understanding, they say, that can come in large part from seeing dwarfs portrayed realistically and respectfully in pop culture.

"Whenever we look at the progress we're making, or trying to make, we can assign credit -- or blame -- to images of dwarfs in culture and media," says Gary Arnold.

That's where Santa's dancing elves come in -- and that's where things get complicated again. The decision to uninvite Radio City after nobody-even-knows-how-many years was made by 2009's New York conference organizers alone, not by LPA as a whole. The planners for the 2010 gathering in Nashville fully intend to have Radio City's elf recruiters return.

Ask the first group, and they'll acknowledge that many LPs (often amateurs with unrelated career aspirations) enjoy performing in the show, and stress that those who are interested should by all means seek out the opportunity on their own. But LPA, they say, should not appear to endorse or place its imprimatur on an enterprise that can be seen as perpetuating age-old dwarf stereotypes. (And, as one parent of a dwarf wondered: "How will parents at their first LPA conference feel if it looks like this is the only opportunity that awaits their child?")

Nashville organizers feel otherwise. "My daughter did Radio City and she loved it," says conference organizer Sheryl Hankins, who is of average stature. "She's a pediatric oncology nurse. At no point in her life did she think she had to be an elf to make a living. I think other people realize dwarfs are not just elves, too. I guess I just give everyone more credit than that."

Former "elves" are divided as well. My sister-in-law performed in Radio City's Chicago show one year, and now wishes she hadn't. But for actor Mark Povinelli, 37, who is well under 4 feet tall, it was different (possibly, in part, because he's an actor). "I mean, part of me was like, ugh, I can't believe I'm doing this -- but every actor says that at some point," he says. Plus, he notes, the generous salary is what helped him afford to go on to do Shakespeare and Durang in the months that followed.

Even those opposed to Radio City's presence at the conference -- or, more broadly, who are bothered by the limited roles available to dwarfs -- stop far short of condemning the actors who choose to play those roles.

"When people with dwarfism are portrayed negatively, they are usually portrayed by people with dwarfism," observes Joe Stramondo, 27, chair of LPA's advocacy committee and a doctoral candidate in bioethics at Michigan State University. "This complicates the issue."

Few actors of any height are in the position to cherry-pick plum roles, if you will. Most, in fact, can rarely afford to say no. Given how often roles come along like Dinklage's in "The Station Agent," this leaves many very-short-statured actors to choose, in effect, between supporting their families or playing Jimmy Kimmel's left testicle.

"When I first get a script, I flip through to see where I'm going to bite someone's ankle or punch someone in the nethers or fight the tall guy," says Povinelli. (Povinelli will admit, with a sheepish smile, that early in his career he did in fact play Kimmel's testicle. It should be noted that he went on to play Toulouse-Lautrec -- a role normally performed by an average-statured actor on his knees -- at Lincoln Center and tour many countries as Torvald Helmer of Lee Breuer's "Dollhouse," a modern version of the Ibsen drama.)

That said, there's no simple formula for determining which roles are "negative" in the first place. For one thing, it's not necessarily as simple as highbrow vs. lowbrow. (We're talking to you, Gary Oldman.) Povinelli also says that, perhaps counterintuitively, it's often the "fantasy" roles (leprechauns, goblins, denizens of the HarryPotterverse) that offer more depth than the real-guy ones.

"Some people give LPs a hard time about the costumed fantastical characters they play, but in fact, that's some of the most meaningful, meaty work we have available," he says. Cases in point: On "Charmed," he played a leprechaun warrior with an interesting story line and complex motivations. On "Dharma and Greg," he played Greg's old college roommate, who was ... short. (All the ensuing short jokes made "inadvertently" by a rattled Dharma were supposed to be at her expense. But they were still ... short jokes.)

Povinelli agrees that the word "midget" -- and all it conveys, on-screen and off -- is an issue to be addressed. "But what bothers me most is being invisible," says Povinelli. "People butting in front of me because they think I'm a child, or being hit in the head with carry-on bags. The other day I was at the supermarket, pushing a full cart, the handle way up there, and in front of me there was a woman reaching down to the bottom shelf to get something. I didn't see her, and totally plowed into her, knocked her down. It gave me the weirdest sensation: I loved it. That had happened to me, in some way, so many times, and now I was the asshole doing it. It gave me some sort of sick satisfaction," he says. "You can call me 'midget' -- that's your problem, not mine. But when you ignore me as a human, when you don't give me the courtesy you'd give a person of average height, that's when it really gets me."

Disabled Texan aspires to a chef career

From the El Paso Times:

EL PASO -- Sometimes Colin Lewis feels as if he were on a treadmill.

"My wheels are turning but I'm not going anywhere I need to go," the aspiring chef said from his apartment in the Upper Valley. "I am still trying to push myself into figuring out what needs to be done to get to where I want to be."

Where Lewis aspires to be is behind the line, preparing meals for hundreds of guests.

It's just that if he wants to someday work in a kitchen, he has to wait for a lift. And instead of standing and facing the stove, he sits. He has no choice. Lewis is paralyzed from the waist down.

Experiencing severe back pain on April 19, 2006, Lewis went to an El Paso hospital. The next day he was diagnosed with transverse myelitis -- a neurological disorder caused by inflammation across both sides of the spinal cord -- leaving him a paraplegic at 24.

Although Lewis never cooked in a professional kitchen, his love of cooking developed from a very young age.

"I love to cook -- I always have," he said. "Cooking has always been a big thing in my family. My mom cooked, my dad cooked, my grandmother is Polish, so she can cook, and my grandfather cooks, so it's always been part of my family."

Prior to being diagnosed with transverse myelitis, Lewis was an active husband and father. He was a double major (criminal justice and psychology) before taking a semester off to drive a truck when bills become too much to handle.

Understandably, Lewis became depressed when he was put in a wheelchair.

"We hated seeing him unmotivated and depressed all day long," said his wife, Kate Lewis. "Just seeing him playing video games all day and not being able to get out of the apartment was depressing for us, too."

Being proactive, Kate Lewis went online to find a culinary arts school.

She found the Texas Culinary Academy -- which has a Le Cordon Bleu Program -- in Austin and applied for her husband.

"I give her a lot of credit," said Sherry Lewis, Colin Lewis' mother. "He was very depressed, and she just got tired of him being that way and she knew he had to do something. She is the one who made the inquiries to begin with. When they came back positive, that's when she told Colin about it."

The family packed up and moved to Austin.

"It was amazing how they took him in and how much they helped him," Sherry Lewis said. "They were talking about having a cooking buddy for him who would reach for stuff off the top shelf and help him in whatever he needed. But then they said if he gets into a real kitchen will they assign somebody to do this or does he have to figure out how to work that out himself?"

Lewis adjusted and thrived at the culinary school. He even got a job at the Jester Dining Hall at the University of Texas campus. Then he became sick and had to leave in August 2007.

"I have two classes and my internship to go," he said. "I have my bakery and a restaurant practical to complete. I got so sick, I had to be put on a medical leave of absence but instead they withdrew me from the whole program. And when I was ready to go back, they said I had to pay $10,000 in loans. That is the situation I'm in now."

Lewis said he has been looking for a restaurant job in El Paso, but because of his wheelchair and the limited space in a kitchen, it has been difficult.

"I can't roll into a kitchen and ask them to build me a table before they hire me," he said. "Who is going to do that in the culinary world? There is no room for wheelchairs in the kitchen."

One very basic problem is that all kitchen equipment is standard; nothing is built for a chef in a wheelchair. But Lewis does not mind shouldering up to the counter and cooking at chest level.

There simply is not enough room behind the line for a wheelchair to maneuver, and he fully understands that.

But by no means is Lewis willing to give up. In the kitchen, he continues to chop, dice, sear and saute -- everything from his wheelchair height.

"Everything that I learned in culinary school, I myself had to realize, OK, here is the technique, I can I do it from where I sit," he said. "There's different things that can help, like boards that you can click on to your chair. And there's these counters that you can spend thousands of dollars on so the counters can lower themselves down where you can open a panel to get the wheels of the wheelchair in."

The National Restaurant Association, the National Council on Disability, and The Disabilities Statistics Center in San Francisco -- a company that collects statistics on disabled persons in the work force -- could not identify a single paraplegic chef working in a major restaurant.

But Lewis marches on, not worrying too much about whether a restaurant owner would take a chance on a wheelchair-bound chef working out in the frantic and cramped confines of a fine-dining kitchen.

Instead, Lewis is focusing on the message he is trying to send.

"Just because you become disabled, you still can cook," he said. "You need to get in there and do it. You need to be independent. Plus, there is nothing wrong with asking for help or receiving help when you are in the kitchen. Maybe it requires a little bit more preparation, but it can be done."

Lewis is not setting his sights only in El Paso. He recently applied to be a contestant on the Food Network's "The Next Food Network Star."

"I'm still going to keep on trying," he said. "I don't want to be a TV star and get oodles of money. I want to do it because I want to reach people who become disabled for whatever reason, and say, 'Look, get back in that kitchen and cook.' Just because we're in a wheelchair, we are people too. We need the same respect you give a person whose legs work."

Tennessee teachers learn more about teaching kids with disabilities

From New Channel 9 in Chattanooga, Tenn.:

Teachers from several different schools spent the day today learning how it feels to have a physical handicap or a learning disability.

"When we got on the shuttle, she immediately said, to your right there is a seat. She told me where a seat was. I never thought about how valuable it would be for someone just to tell you where a seat was when you get on the bus," said Kim Fisher, the Principal of Black Fox Elementary School.

Kim spent the day wearing dark glasses to simulate being blind. She carried a walking stick and had a friend by her side to help her navigate the streets of downtown. It's part of the Kids Like you, Kids Like Me program, sponsored by Siskin Children's Institute.

"The idea is that they will see that everyone still likes to do the same things and can do the same things. People just do things differently," said Julie Mickel, the Training and Outreach Specialist for Siskin Children's Institute.

Julie Mickel says this is the sixth year that teachers have been involved in three day workshop. In all, about 40 teachers and administrators are participating this year. Coupled with the Individuals with Disabilities Education Act, the push is to help better educate children with disabilities in the general school curriculum.

The program is meant to help teach educations how to better work with kids with disabilities. So, today every teacher involved has been given a physical, visual, or learning disability and sent out into downtown Chattanooga, to see how they deal with that disability

The teachers were sent out to do every day things like ride the shuttle, order coffee, and cross the streets. But with these added disabilities, even the easiest of tasks were made a bit more difficult. Julie Mickel says its an important tool to help teachers better understand their students.

"It's not only about teaching kids with disabilities. Its also how teach the children about the children with disabilities and how we include them in our schools," said Mickel.

Principal Fisher shared the same sentiment.

"It's so important that you recognize the different disabilities children have. Some of them might not even be identified by special education, but they still have special needs that have to be addressed in a regular education classroom," she said.

The Kids Like you, Kids Like Me program was created 11 years ago and has been helping educate teachers for the last six years. It will also show teachers how to teach children without disabilities how to better interact with kids who are disabled in some way.

British man with Down syndrome turns down offers to take his virginity

From The Telegraph in the UK:

A man with Down's syndrome whose mother launched a campaign to find a woman to take his virginity has decided to remain celibate.

Otto Baxter, 21, made headlines around the world when his mother Lucy, 50, said she was even willing to hire a prostitute to fulfil his wish. (Both are pictured.)

But despite numerous offers – including a chance to sleep with Australian sex worker and campaigner Rachel Wotton – he has told his mum he wants to wait for Miss Right.

When a mother is right to go public Mum Lucy said: "Since Otto was in the news he has literally been flooded with offers from women but even though he has been tempted he has never gone through with it.

"He says to me that he wants to wait for the right girl which I think is fantastic. He has come to a mature decision and I am very proud of him for that.

"Someone claiming to be from Zoo magazine also called up and said they would be willing to put up the money for Otto to lose his virginity. Otto declined."

Mum Lucy, who adopted Otto from birth, said he almost popped his cherry when Rachel Wotton, 32, a prostitute who specialises in providing sex for disabled people, visited their home in Abingdon, Oxon, in May.

She said: "A production company contacted us and said they wanted to talk to us with Rachel about the sex industry and people with disabilities.

"Otto was besotted with Rachel, she was very beautiful and dynamic and he could have easily made arrangements with her to have sex, but he didn't.

"He decided that if he did get a girlfriend and they had done something similar he wouldn't like that at all, so he didn't." Otto will be appearing in Love, Lust and Las Vegas at 9pm on BBC Three on July 21.

NZ bakers say adding folic acid to bread will be too costly

From the New Zealand Press Association:

Bakers mounting a publicity campaign to oppose the folate "fortification" of bread to protect babies against a devastating birth defect claim say adding the diet supplement will cost them millions of dollars.

The Baking Industry Association (BIANZ) is making a last-minute stand against the health move, agreed between Australia and New Zealand, and has asked for implementation of the supplements to be delayed.

BIANZ president Jason Heaven said a review of the supplements will not produce a decision until October - a month after existing regulations say that folic acid must be added to bread.

The folic acid fortification was ordered last year to prevent some devastating neural tube defects in babies, such as spina bifida, giving protection to women unaware they might be pregnant.

But the bakers said any U-turn on the project will mean they are not only faced with the cost of installing equipment to add the folic acid from September, but the cost of taking it out if the rule is axed.

"Bakeries around the country will spend millions of dollars in the process of introducing folic acid to their products," said BIANZ executive officer Belinda Jeursen. "If the law is reversed again a few months after its introduction, you can double that cost".

Folic acid is added to flour at the mills in Australia, but Heaven said bakers here will be adding it at the bakery in its raw form or as part of an improver or premix.

Advertisement
According to figures on the Ministry of Health website, the cost of adding folic acid has been estimated at $1.7m in the first year and $2.3m annually after that. The benefit from reducing birth defects is estimate at $13m a year, with a net benefit over 15 years of $135m.

Critics of the addition of extra folic acid to the national diet, branded as "mass medication", initially raised concerns over the possibility of an increased cancer risk in old people.

But Professor Murray Skeaff, a specialist in human nutrition at Otago University, said on Monday that a big "state of the art" scientific study which has not yet been published, "shows that there is no increase in cancer risk with high-dose folic acid".

Animal studies have shown too much folic acid supplements in pills can spur some cancers. And one study which tracked 640 men found that 10 years later, folic acid users were more likely to have developed prostate cancer.

But Skeaff said that on the basis of the cancer risk, "there is no reason the proposed fortification should not go ahead" "There is no evidence of cancer risk."

At a conference in Prague two weeks ago, a pooled analysis of all the randomised control trials of folic acid were revealed by the clinical trials service unit at Oxford in Britain.

The results from around 35,000 individuals who participated in studies of high dosage folic acid supplementation in countries around the world "showed that there was no significant increase or decrease in the risk of cancer" Skeaff said.

The trials used high dosage folic acid, ranging from 800 micrograms to about 2500 micrograms a day, compared with the proposed addition of 140 micrograms a day to the New Zealand diet.

The studies, mainly done in Europe and North America since the mid-1990s, found that folic acid and B vitamins had no effect on cancer risk in the people taking them.

"The results showed no evidence of increased risk for prostate cancer, and they showed no evidence of increased risk for colorectal cancer, which are the two forms of cancer for which some much smaller studies had previously found some evidence of increased risk," said Skeaff.

Lyall Thurston, speaking for a coalition of parents of children with spina bifida, said the planned supplements would reduce the number of babies born with neural tube defects. He claimed the campaign against them was being funded for commercial reasons.

Smoking may speed the progression of MS

From Reuters Health:

NEW YORK -- Multiple sclerosis (MS) patients who smoke have a speedier progression of the disease, a new study in the Archives of Neurology suggests.

Dr. Alberto Ascherio of the Harvard School of Public Health in Boston and his colleagues also found that smokers with MS were more likely to have the progressive form of the disease, in which symptoms steadily get worse, rather than the relapsing-remitting form, in which a person has MS symptoms intermittently.

"Most of the adverse effects were seen for current smokers, which in some way is good news because it suggests that stopping smoking can help," Ascherio told Reuters Health.

People who smoke are known to be at increased MS risk, but research on whether smoking affects the course of the illness has had conflicting results, he and his colleagues note. They followed 1,465 MS patients, 17.5% of whom were current smokers, for an average of just over three years to investigate.

Of the 891 patients the team followed for that period to determine the rate of progression from one form of disease to the other, 72 saw their MS progress to the worse relapsing-remitting form: 20 of 154 smokers, 20 of 237 ex-smokers, and 32 of 500 never-smokers.

That meant that the smokers were 2.4 times as likely as non-smokers to have primary progressive MS, and those who had relapsing-remitting disease were 2.5 times more likely than never-smokers to develop secondary progressive MS during the follow-up period.

At the study's outset, the smokers had more disability, more severe disease, and more atrophy in their brains. Over time, they also showed a faster increase in the total amount of injured brain tissue and their degree of brain atrophy.

The mechanism through which cigarette smoking could worsen MS isn't clear, Ascherio said. Smoking has been linked to some other autoimmune conditions, such as rheumatoid arthritis, he noted, but not others, so the habit's effects on the immune system could be a factor; another possibility would be that cigarette smoke is toxic to the nervous system.

There are currently no proven risk factors for progression of MS that a patient can do anything about, Ascherio noted.

"Although causality remains to be proved," he and his colleagues write, "these findings suggest that patients with MS who quit smoking may not only reduce their risk of smoking-related diseases but also delay the progression of MS."

Defense says extraditing British hacker with Asperger's would violate human rights

From The AP:

LONDON — Prosecutors failed to consider the human rights argument against forcing an autistic British man accused of hacking into U.S. military computers to stand trial in the United States, a defense lawyer said July 14.

Attorney Edward Fitzgerald told the High Court that extraditing Gary McKinnon (pictured) carried "an avoidable and unnecessary risk of serious psychological suffering."

U.S. prosecutors accuse McKinnon, 43, of breaking into 97 computers belonging to NASA, the U.S. Department of Defense and several branches of the military soon after the Sept. 11, 2001, terrorist attacks. McKinnon says he was looking for evidence of UFOs.

McKinnon has been ordered to stand trial in the U.S., and British courts have rejected several attempts to block his extradition.

His lawyers argue that McKinnon should not be extradited because he has Asperger's syndrome, a form of autism, and could be at risk of psychosis or suicide if he is sent to the U.S.

Earlier this year McKinnon offered to plead guilty to a criminal charge in Britain to avoid facing trial in the United States. But the Crown Prosecution Service ruled that the case was best prosecuted in the U.S.

Fitzgerald said the service and its top official, Keir Starmer, had failed to take account of humanitarian factors when they made the decision.

McKinnon's lawyers have asked the High Court to overturn the prosecutors' decision, as well as the British government's decision to extradite him.

Judges are due to rule on both points later this month.

Psychiatrists work to understand the motivations of people with BIID who want amputations

From Wired:

One day, after years of agony, an Australian man took a large quantity of dry ice and intentionally damaged his left leg, so that a surgeon would have to amputate it.

The action was intentional and the man, Robert Vickers, described the feeling of waking up in the hospital without his leg as “absolute ecstasy.” He’s one of a small number of people who have what psychiatrists have come to call body integrity identity disorder (BIID) in which patients report the desire to have one or more of their limbs amputated because the extremities don’t feel like they “belong” to their bodies.

The disorder is the subject of a debate between psychiatrists and neuroscientists about whether the brain physiology causes the psychiatric condition or whether the causality runs in the other direction. New research by both sides has yielded fresh ammunition for both interpretations, highlighting how difficult it is to separate biological from psychological phenomena.

Columbia University psychiatrist Michael First helped pioneer the identification of the disorder and his latest research suggests it’s just a subset of a larger psychiatric condition in which people become fixated on being disabled.

On the other hand, Paul McGeoch’s recent work at the University of California, San Diego seems to explain the disorder as a purely neurological disease resulting from a malfunctioning right parietal lobule, which appears to maintain the mind’s body map. His lab used fMRI to determine that four self-reported BIID patients’ right parietal lobules didn’t light up when their unwanted limbs were touched. Normal people’s did.

“Oh, this is certainly a breakthrough. We were stunned by the results,” David Brang, a graduate student who co-authored a paper on the study with McGeoch, said recently on the Australian television show on which Vickers told his amazing story. “It’s very clear that this is a neurological phenomenon when it always been thought of as a psychological issue.”

First, though, disagrees. He’s in the midst of a new study about a small group of people who don’t want their limbs amputated, but do want to be disabled in some other way. Some of the 47 people First has interviewed want to be paraplegic, for example, and feel that their healthy bodies are mismatched with their internal representations of themselves.

The study is a follow-up to an similar set of psychiatric evaluations First did on people who wanted their limbs amputated. The new group turns out to have a lot of the same feelings and desires as people with BIID.

“The vast majority of people that I interviewed are very similar to the BIID group,” First said.

Both groups express a lifelong desire to be disabled. They pretend to be disabled. They occasionally injure themselves in an attempt to reach that state, although First said only one person reported an attempt to induce paraplegia by injecting alcohol into the spine.

His findings could indicate there is a deeper psychiatric disorder underlying the neurophysiological observations from UCSD.

“It suggests that the common factor has to do with the desire to be disabled,” First said. “As children, we see disabled people all the time and for whatever reason. For certain children, they see people who are disabled and decide they want to be that way. The nature of the disability is variable, but the desire is common.”

First doesn’t rule out the importance of the fMRI study, but he disputes that the results show the cause of the illness.

“You are seeing a brain manifestation of a psychiatric illness,” he said. “I find their work exciting, but I’m dismayed at how they came to their conclusion.”

One area where the neurological results could be helpful is to change the treatment regimen for BIID patients who want amputations to include remediation exercises to retrain the brain into readopting a limb as its own. How such a treatment could be accomplished for people who want to be paraplegic is unclear.

UAE pushes for more disability rights

From The National in Abu Dabhi, UAE. In the picture, People participate in sports activities at the Kuwaiti Disabled Sports Club.

Legislation that would provide a guaranteed job, more pay, extra financial support and a top-notch education for Kuwaitis with disabilities may sound promising, but Hashem Taqi, the director of the country’s disability society, said the proposed laws do not go far enough to protect the disabled from discrimination.

Five MPs presented a draft bill to parliament this month, and a parliamentary committee is also discussing new legislation. Any amendments to the law for the disabled would be the first since it was passed in 1996.

One of the MPs, Hasan Johar, said the law needed updating in order to “treat the handicapped as regular people and benefit from them as human resources”.

Mr Johar said those with disabilities had missed out on the salary increases other sectors of society had received.

He also wants to provide more benefits to the parents of the disabled, modify their houses at no cost and improve their education to international standards.

Kuwait was the first Gulf country to legislate for the disabled, and the United Nations Development Programme said in a report last year the country “plays a leading role among Arab states” in caring for its 27,000 registered disabled people.

All Kuwaitis receive benefits from the government in the form of generous pensions, marriage bonuses, free health care and education. Disabled citizens get even more, including up to 7,000 Kuwaiti dinars (Dh90,000) every year for private schooling.

Public schools and most private schools provide no facilities for the disabled, forcing many to attend expensive, special-needs schools. There are about 22 primary and secondary schools that provide services for the disabled in Kuwait.

The country’s disabled society, which has 10 per cent of its 1.5 million dinar budget paid for by the government, also provides day-care and residential facilities for about 550 children with disabilities such as cerebral palsy, autism, Down syndrome and severe mental retardation.

Its director, Mr Hashem al Taqi, said some MPs and parents were “very emotional and they go way too far” in trying to get segregated services for the disabled.

He said many MPs have pushed for special schools, clinics and clubs, but “we are not supposed to isolate them”.

“Most of the public don’t understand the philosophy behind care for the disabled,” he said. “We have to be together, because the disabled person has to be a part of society, he’s one of us.”

Although there is a great amount of public support among Kuwaitis for the disabled, they face other barriers to integration, such as accessibility. “Ninety per cent of the entrance ramps are wrong,” Mr al Taqi said, adding that public buildings, cinemas and clubs rarely have Braille or other symbols needed by the blind and deaf.

Mr al Taqi was at the UN’s headquarters in New York when the convention on rights for the disabled was finalised in 2006. Kuwait had been a key part of the discussions and debate and had “worked for so many years to change the law for disabled people around the globe”, he said.



The convention’s purpose was to “promote, protect and ensure the full and equal enjoyment of human rights and fundamental freedoms by all persons with disabilities, and promote respect for their inherent dignity”, the document says.

It obliges countries to modify existing laws that discriminate against the disabled, and to make new laws to implement the convention.

“It was a special occasion for all of us; in fact, it was like a carnival,” Mr al Taqi said.

But their celebrations were short-lived. Instead of putting ink to paper, the government opted out, making Kuwait the only Arab country not to become a signatory.

Mr al Taqi said there had been two parts of the treaty that the government had baulked at.

The convention states that all disabled children must be registered so that they receive citizenship (many families do not do this as they do not think their child will need legal papers for travel, education or military service).

But the Kuwaiti authorities mistakenly thought this meant all disabled children born in Kuwait must get Kuwaiti citizenship, no matter where their parents were from, Mr al Taqi said.

Kuwait, like the other Gulf countries, does not offer citizenship to its large foreign workforce except in exceptional circumstances.

Second, according to Islam and the laws of Kuwait, Muslims cannot give an adopted child their family name. Mr al Taqi said that meant an adopted child could not inherit anything from his or her parents. The UN convention stipulates that an adopted child must take on the name of his or her adopted family.

Mr al Taqi said that even Saudi Arabia had signed the convention. “We are not more Muslim than Saudi. We cooked the UN convention and when it was ready to serve, we didn’t even get the chance to taste it.”

Mr Johar said local laws needed to be a changed so that they could support international obligations.

“If we reach that standard we can go ahead and force the government to sign these kinds of treaties,” he said. “If we signed the treaty when our local laws are not to the international level, it would be a kind of embarrassment.

“Sooner is better but let’s do it with better preparation,” Mr Johar said, adding that there might be more momentum when parliament resumed after its summer break in October.

Whether the treaty makes it back on the government’s agenda or not, the sportsmen at Kuwait Disabled Sports Club are generally happy with the care they receive from the state, although some believe other Gulf countries are offering better health care.



Hazzaa al Enezi, a table tennis coach, said the benefits were so good that citizens tried to get disabled status “even if they get a small portion of their baby finger amputated”.

The sports club has a pool and an athletics track and facilities for disabled games such as wheelchair basketball and goalball, a sport for the blind in which three-man teams throw a ball packed with bells past each other.

The government pays for national teams, which include non-Kuwaitis, to compete around the world.

Mr al Enezi, who has been confined to a wheelchair since contracting polio, said: “Kuwait used to have the best care in the Arab world, but we’re falling behind. Maybe the UAE is better than us now,” he said.

His training partner, Hamed al Enezi, a quadriplegic who is from the same tribe, said: “We are a rich country – the government can do more. If you are married, the government gives you a house, but many disabled people do not marry, so it’s tough for us.

“In the parliament, they always talk about rights, but they don’t improve them,” he said.

Hate crimes bill to protects gays, disabled people reaches U.S. Senate

From The AP:

WASHINGTON — Legislation to extend federal hate crimes protections to gays and the disabled reached the Senate floor July 15 with the best prospects in years to become law.

The measure, which also makes it easier for federal prosecutors to get involved in hate crimes cases, passed the House in a similar version in April and enjoys solid support in the Senate. And for the first time since Sen. Edward M. Kennedy, D-Mass., first introduced the bill in 1997, pro-bill Democrats control both chambers of Congress and the White House.

President Barack Obama, unlike his predecessor, George W. Bush, backs the legislation. Attorney General Eric Holder has urged Congress to act so the government can prosecute cases of violence based on gender and sexual orientation.

"Hate crimes are a sad and tragic reality in America," Senate Democratic Whip Dick Durbin, D-Ill., said in urging approval of the measure.

Passage was not a certainty. The bill was offered as an amendment to a $680 billion bill approving defense programs, a move that Sen. John McCain of Arizona, top Republican on the Armed Services Committee, said was "highly inappropriate."

Senate Majority Leader Harry Reid, D-Nev., has called for a vote, requiring 60 supporters, to move forward on the hate crimes measure. That vote could come as early as Thursday, but timing for a final vote on the amendment was uncertain.

Most Republicans oppose the legislation, saying it infringes on states' rights or could lead to the criminalization of religious expressions of opposition to homosexuality.

Current hate crimes law applies to acts of violence motivated by prejudice against a person's race, color, national origin or religion. That would expand under the legislation to include crimes targeting people because of gender, sexual orientation, gender identity or disability.

Supporters noted that of the nearly 8,000 hate crimes reported to the FBI every year, about 15 percent are linked to sexual orientation, third after those involving race and religion.

Existing federal hate crimes law also applies only to crimes where the victim is engaged in narrowly defined activities such as serving on a jury, attending a public school, participating in a program administered by a state or local government or involving interstate commerce. The proposed legislation would eliminate the "federally protected activities" requirement.

It approves $5 million in federal grants to help states and local authorities investigate and prosecute hate crimes, provides forensic and prosecutorial assistance and promotes programs to combat hate crimes committed by children and teenagers.

The measure permits the federal government to take over a case only when the Justice Department certifies that a state cannot or will not effectively handle it.

Sen. Chuck Schumer, D-N.Y., and other supporters also stressed that religious leaders or others who voice objections to homosexuality could not be held liable. The bill "does not criminalize speech or hateful thoughts," he said. "It seeks only to punish action, violent action, that undermines the core values of our nation."

The bill is named for Matthew Shepard, the Wyoming college student who was targeted because he was gay in a fatal attack in 1998.

Forty-five states have hate crimes laws of various scope, according to the Leadership Conference on Civil Rights.

Nurse at NY nursing home accused of raping a disabled patient

From WHEC-TV:

A nurse at the Shore Winds nursing home in Rochester is accused of raping a "disabled" patient. When News 10NBC broke the story concerning the allegation in December, the nursing home denied it.

Kipper Stevens is charged with one count of second degree rape and one count of endangering the welfare of a disabled person. He plead not guilty in court this morning. His lawyer said he couldn't comment yet.

Stevens is accused of raping one of the patients under his care.

The complaint came into the state health department just before Christmas. It said a nursing home worker had sexual contact with a resident. At the time, the New York State Department of Health said it inspected the nursing home that day and found the claim was serious enough to warrant a full investigation. Today's charges are the result of a Rochester Police Department investigation.

When News 10NBC called Shore Winds back in December to find out what happened, the man who took our call told us quote, "nothing happened." When pressed with more questions, he said he was done and he hung up. According to what was said in court this morning, Stevens has been fired from the nursing home. Lawyers also said he is married with two children.

Here are quotes from Assistant District Attorney Matthew Schwartz:

"He's accused of having sexual intercourse with the victim while in his position as a licensed nurse. The victim is one of the patients at the facility he was working at."

"This was an investigation conducted by the Rochester Police Department. I think they did a very good job. And these charges stem from that investigation."

"I'd like to make it clear that the nursing home has been extremely cooperative throughout the investigation. This appears to be an isolated incident. There was no evidence uncovered during the investigation that would lead us to believe that anybody else associated with the nursing home is responsible or anyway involved in these kinds of actions."

Stevens was sent to jail on $1,500 bail. He is scheduled to be back in court July 21.

Famed visually impaired conductor and his wife with terminal cancer go to Dignitas for assisted suicide

From The AP. In this Dec. 15, 1967 file photo, British conductor Edward Downes and his wife, Joan, are seen with their new baby son.

LONDON — He spent his life conducting world-renowned orchestras, but was almost blind and growing deaf — the music he loved increasingly out of reach. His wife of 54 years had been diagnosed with terminal cancer. So Edward and Joan Downes decided to die together.

Downes — Sir Edward since he was knighted by Queen Elizabeth II in 1991 — and his wife ended their lives last week at a Zurich clinic run by the assisted suicide group Dignitas. They drank a small amount of clear liquid and died hand-in-hand, their two adult children by their side. He was 85 and she was 74.

The deaths were a poignant coda to Edward Downes' illustrious musical career, and have reignited a debate in Britain about whether people should be able to help ailing loved ones end their lives.

The couple's children said Tuesday that they died "peacefully and under circumstances of their own choosing" on Friday.

"After 54 happy years together, they decided to end their own lives rather than continue to struggle with serious health problems," said a statement from the couple's son and daughter, Caractacus and Boudicca.

"They wanted to be next to each other when they died," Caractacus Downes told London's Evening Standard newspaper. "They held hands across the beds.

"It is a very civilized way to be able to end your life," he added.

Downes' manager Jonathan Groves said the couple were inseparable and would have reached the decision together.

"Sir Edward would have survived her death, but he decided he didn't want to. He didn't want to go on living without her," Groves said.

One of Britain's most renowned conductors, Downes had a long and eminent career, which included years as head of the BBC Philharmonic and a five-decade association with the Royal Opera House.

In recent years he had become almost blind and nearly deaf, increasingly relying on his wife for support.

Joan, a former ballet dancer, choreographer and television producer, had devoted years to working as his assistant, but she was recently diagnosed with cancer of the liver and pancreas, and given only weeks to live.

Groves said he was shocked by the couple's deaths but called their decision "typically brave and courageous."

The double suicide is the latest in a series of high-profile cases that have spurred calls for a legal change in Britain, where assisted suicide and euthanasia are banned.

Under British law, assisting a suicide is punishable by up to 14 years in prison. But courts have become reluctant in recent years to convict people. No relative or friend of any of the Britons who have died in Dignitas clinics has been prosecuted.

The Metropolitan Police force said it had been notified of the deaths, and was investigating. Charges are unlikely.

Despite evidence of changing attitudes, parliamentary efforts to change the rules have all been defeated — most recently last week, when Parliament's upper chamber, the House of Lords, voted down an amendment that would have relaxed the prohibition on assisted dying.

Sarah Wootton, chief executive of campaign group Dignity in Dying, said the couple's deaths showed the need to regulate assisted suicide.

"This problem is clearly not going to go away," she said.

"People should be able to make such decisions for themselves, but safeguards are the key," she said.

Peter Saunders, of the anti-euthanasia group Care Not Killing, argued that loosening the law could "put vulnerable people, many of whom already think they are a financial or emotional burden to relatives, carers and the state, under pressure to end their lives through a change in the law."

More than 100 Britons have died in Swiss clinics run by Dignitas since the organization was established in 1998. The organization takes advantage of the country's liberal laws on assisted suicide, which suggest that a person can be prosecuted only if they are acting out of self interest.

Roughly 100 foreigners — most of them terminally ill — come to Switzerland each year to end their lives. Some are healthy except for a disability or severe mental disorder. Typically they go to a room run by Dignitas, which provides them with a lethal drink of barbiturates. In five minutes they fall asleep — and never wake up.

Other countries, including the Netherlands and Belgium, and the states of Oregon and Washington in the United States, allow the incurably sick to obtain help from a doctor to hasten their death.

Only Switzerland, in a law dating back to 1942, permits foreigners to come and kill themselves. Other organizations provide such services for Swiss residents, but Dignitas is the main organization for foreigners.

Critics accuse Dignitas of promoting "suicide tourism."

Dignitas charges 10,000 Swiss francs ($9,200) for its services, which include taking care of legal formalities and arranging consultations with a doctor willing to prescribe the barbiturates.

Edward Downes is one of the most prominent Britons to have traveled to Switzerland because of its open attitude toward the practice.

He was born in 1924 in Birmingham in central England. He studied at Birmingham University, the Royal College of Music and under German conductor Hermann Scherchen.

In 1952, he joined London's Royal Opera House as a junior staffer — his first job was prompting soprano Maria Callas. He made his debut as a conductor with the company the following year and went on to become associate music director. Throughout his life he retained close ties to the Royal Opera, conducting almost 1,000 performances of 49 different operas there over more than 50 years.

He also had a decades-long association with the BBC Philharmonic Orchestra, where he became principal conductor and later conductor emeritus. In the 1970s, he became music director of the Australian Opera, conducting the first performance at the iconic Sydney Opera House in 1973.

Edward and Joan Downes are survived by their children and grandchildren. The family said the couple had no religious beliefs, and there would be no funeral.

Florida grandmother with a disability supports her grandkids by selling water

From the St. Petersburg Times. Janet Santiago sells water with her grandchildren, from left, Melissa Santiago, 13, Jose Romero, 13, and Elizabeth Santiago, 15, at Florida.

TAMPA, Fla. — Janet Santiago owed Tampa Electric $486, city of Tampa water $213, and Bright House $70.

Her checking account was $200 in the red.

The 58-year-old disabled woman has four grandchildren to feed and no job.

She knew what to do. Santiago and three of the kids recently went to the corner of N Dale Mabry Highway and Bearss Avenue with a blue cooler and a cardboard sign.

Grandma

Struggling

Raising 4 teens

Ice cold water $1.00

"They want ice water over there," Santiago yelled in her gravely, Massachusetts accent, as cars honked. "Go, Jose, go!"

Jose Romero, 13, grabbed 20-ounce bottles of Sam's Choice water and sprinted to cars stopped at red lights. He scurried back, then stuffed dollar bills in a bucket once filled with a gallon of Good Day vanilla ice cream.

For the past year, this is how Santiago has paid the bills.

Santiago and her husband retired to Florida in March 1988. "Came here with $119,000 clear," she said. "Bought the house cash."

According to Santiago, her husband blew through the money, didn't pay taxes and took out a mortgage on the house when the IRS caught up with him. "Well," she said, "the both of us." Court records show several domestic violence disputes and divorce proceedings that meandered through the system from 2003 to 2004. Santiago didn't get anything but the house — and the mortgage.

By then, she already was taking care of Joey Santiago, now 17, and Jose Romero. Melissa and Elizabeth Santiago, now 13 and 15, came next.

Department of Children and Families spokesman Terry Field said that the four children have been in the system "for a period of time."

Each child has been shipped to one abusive relative or foster home after another, Santiago said. The state removed Joey from his mother's house because of abuse. Jose's father and his mother, Santiago's daughter, were on drugs. Her youngest son dropped Melissa and Elizabeth at Santiago's house one day in 2004 and kept driving — all the way to Pennsylvania.

It's not that Santiago won't work; she says she is on disability and can't work. She has chronic obstructive pulmonary disease, the result of years of smoking. She hasn't been able to walk the same since suffering an accident while trying to dock a boat in 1991. She gets around by motorized wheelchair.

Her $1,316-a-month mortgage eats up all of her $571 disability check — and then some.

For each girl, Santiago gets $298 a month from the state. For Joey and Jose, she gets more, $430 in disability checks, because both have ADHD.

She also gets $480 worth of food stamps. "Comes out to $96 per person," she said. "How do you bring up teenagers on that? They're older. They need."

With the exception of Joey, who refuses to go to school or work, the grandchildren cut lawns and collect aluminum cans to help their grandmother. The three youngest are students at Memorial Middle. "I'll tell you," Santiago said, "you ain't going to find kids like these."

She said she got the idea to sell water from a woman who was out of work and doing the same thing. She thought it would be an easy way to make ends meet. So she went to the Hillsborough tax collector's office and bought a $15 peddler's license.

She buys two 24-packs of water for $3.98 each and chills the water on ice. She usually parks her wheelchair on the front lawn of the Bay Cities Bank when lunch-hour traffic is thickest.

She said the Lord directs her to various corners. She sells water for two or three hours an afternoon, then goes home and counts the earnings. "We come out when we need," Santiago said. "When we needed electric, we had a sign to say, 'Grandma needed money to help pay the electric.' We don't lie. The Lord knows what we need, and if we're out here lying, we aren't going to get nothing."

She said she makes $100 total during the weeks she sells. Sometimes people give her bags of groceries or large pizzas. One time, Terry Pepin, the ex-wife of beer distributor Tom Pepin, handed over a check for $2,000 — the exact amount that Santiago needed to pay the property tax bill on her W Robson Street home, near Lowry Park Zoo.

"She told me how she takes care of her grandchildren, the problems that her son has and her daughter has," said Pepin, reached later by phone. "I prayed for her and asked God for a number. She said, 'You won't believe it. That's the amount I needed.' "

"That's how big the hearts are out there," Santiago said. "I just dropped my head and cried."

She admits hawking water won't help her in the long term. But she said she can't worry about tomorrow when there are needs that have to be met today.

"The bills are paid by the skin of our teeth," Santiago said. "We just thank the Lord for what we have, what he's given us."

Disabled people in Pakistan want rights, not charity

From Dawn.com:

Last week the deputy attorney general told the Lahore High Court that the federal government had appointed 1,386 people with disabilities to various posts against the two per cent quota for them provided by the law.

Another 800 are to be recruited shortly in the same category. This move was widely lauded and rightly so. But the fact is that the rights of the disabled are not simply limited to job and education quotas as is generally made out to be the case.

In the absence of public awareness of the rights (endorsed by the UN) of this considerable segment — said to number 16 million — of the population of the country, the government has shown limited interest in the welfare of the disabled. Society has been equally indifferent and insensitive.


One just has to look around to understand how difficult it is for a person with a disability to lead a productive life in Pakistan. Only one law has been adopted to facilitate the disabled in the country so far and that too has not been observed faithfully by all. The Disabled Persons (Employment and Rehabilitation) Ordinance was enacted in 1981 making it compulsory for every organisation with a minimum of 100 employees to reserve at least one per cent of its jobs for people with disabilities or pay a fine to the Disabled Persons Fund.

In 1998 this quota was enhanced to two per cent. Even the initial move was not born out of any recognition of the legal responsibility of the state. It was on the personal initiative of Gen Ziaul Haq whose daughter was a ‘special’ child. It is widely acknowledged that the military dictator took a number of measures for people in a similar situation, such as increasing the budget of institutions working for the disabled. But lacking an understanding of the governance process he acted in an ad hoc manner without creating an institutional framework to provide comprehensive social security for the disabled. Strangely, human rights activists have not addressed this issue either. Even jobs and admission to educational institutions can be rendered meaningless if various challenges the disabled face in their day-to-day life are not met. For instance, how can a student on a wheelchair cope with life at a university where there are no ramps and other similar facilities?

Our universities do not even have disability units to facilitate the studies of those with hearing or visual impairments. Were universities to set up such units, they could arrange for the audio recording of books or scan literature to be read on computers with the help of programmes activated with sound.

In fact cases have been reported where people who suffer loss of vision have not been allowed the facility of an amanuensis because the examination authorities had not thought it fit to provide one. Whatever little bit is being done to facilitate people with disabilities is not institutionalised and one has to be grateful to NGOs which have taken it upon themselves to provide badly needed services. But these are limited.

While we have lagged behind, the world has addressed disability issues by formulating a legal framework to make every sector of life inclusive for the disabled. The UN adopted the Convention on the Rights of Persons with Disabilities in 2006.

After much pressure from disability rights advocates, the government proceeded to sign the UN convention in September 2008 but has yet to ratify it. The proof of the pudding is in the eating — in other words in the implementation of the convention. This may be a challenge for a society that is now driven more and more by greed, ambition and ruthlessness.

The convention was found to be necessary notwithstanding pre-existing human rights instruments because persons with disabilities were being marginalised. It lays down eight guiding principles. It is a different matter that all states refuse to be guided by them and society’s behaviour towards all its members is not ideal.


Given the present state of affairs that places even people who have no disability at a disadvantage because they are not on the right side of the social fence, should one find it strange that the disabled are neglected?

These guiding principles call for respecting the inherent dignity of the disabled including their right to make choices, non-discrimination, full participation and inclusion in society, equality of opportunity, accessibility, gender equality and respect for the evolving capacities of children with disabilities and their right to preserve their identities.

One may even feel that these demands are no extraordinary ones. That is true but when it comes to actually providing facilities to enable the disabled to use their full potential, it is so easy to sideline them. There is also the need for an attitudinal change which is not easy to bring about in a society that is hidebound in its perceptions. As the convention says, persons with disabilities must not be viewed as ‘objects’ of charity or medical treatment. They must be recognised as subjects with rights who are capable of making decisions and participating as full members of society.

One positive development to have taken place is that persons with disabilities, at least those with education and awareness, are asserting themselves. The convention itself is proof of this. What is needed is a paradigm shift vis-à-vis disability. The preamble puts it succinctly when it states that disability results from interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.

The disability rights movement has also picked up as technology has been put to good use by people with impairments to make a remarkable contribution in their area of work. As has been scientifically proved, the loss of a facility is invariably compensated for by the extraordinary development of other facilities. History abounds with examples of people who made it to the top in spite of their impairments. Remember Milton and Beethoven?

ACLU sues Santa Monica for harrassment of homeless people with mental and physical disabilities

From KABC-TV:

SANTA MONICA, Calif. -- Santa Monica has become the third coastal city to be accused of trying to run the homeless population out of town. The American Civil Liberties Union has sued the city, alleging police have been harassing homeless people with mental and physical disabilities.

"Johnnie" has been living on the streets of Santa Monica for 10 years. He spends most nights sleeping on a bench. He says the police don't usually bother him.

"Sometimes they do, sometimes they don't. I'm OK now. They left me alone, they kept on going," said Johnnie.

But according to the ACLU, there are several homeless people in Santa Monica that are being harassed and arrested by police.

"To be poor and homeless, and mentally disabled in America is not a crime. But in Santa Monica, police routinely site, arrest, handcuff and jail the poor, the homeless and the mentally disabled," said Mark Rosenbaum, ACLU.

The ACLU filed a federal lawsuit on Tuesday against the city of Santa Monica, demanding more housing.

"The 38-year-old gentleman ... was literally a serious crack addict who was in the recovery process ... was literally sleeping two feet outside the door of the shelter because he could not get in," said Rosenbaum.

"We're perplexed and surprised, because we know that in Santa Monica our track record of really addressing this very complex and difficult issue has been strong and consistent for many decades," said Julie Rusk, who is the Human Services Manager for the city of Santa Monica.

Rusk says there are over 400 shelter beds in the community. The city also opened a 40-unit building to permanently house the mentally disabled.

"We spend many millions of dollars a year to address housing for people," said Rusk. "Because housing is what ultimately ends people's homelessness."

The ACLU says what Santa Monica is doing isn't enough to house the more than 900 homeless people in the city. The group wants the city to spend their money building shelters rather than prosecuting the homeless.

"If the city were to adopt the programs that other communities have done, the cost of housing and to service a homeless person is $33 or less," said Rosenbaum.

The ACLU hopes to solve the issue outside of court. They reached a similar out-of-court settlement with Laguna Beach in June.