A prenatal screening story with a difference

Click here to see a thoughtful, nuanced piece about prenatal screening by reporter Amelia Santaniello of CBS affiliate WCCO in Minneapolis. It avoids the old stereotypes and buzzwords, talks about what people with Down syndrome can achieve, and encourages expectant parents to learn more about the lives of people with DS and their families.

Epilepsy zeitgeist

The number of Google hits for the search "Roberts, epilepsy" as of 7:45 a.m. Eastern: 1,733.

Some examples:

• Roberts facing medical option on 2nd seizure:

  "... he and his doctors will have to decide whether he should take medications to prevent further seizures ... the drugs can have troubling side effects, including drowsiness or insomnia, weight loss or weight gain, skin rashes, irritability, mental slowing and forgetfulness. "

• Experts split on whether Chief Justice Roberts has epilepsy:

  Doctors "were divided on whether the seizure -- the second one the 52-year-old jurist has suffered in 14 years -- is a sign that Roberts has epilepsy, a neurological condition that could require him to take anti-seizure medication to control the disorder."

• Does Justice Roberts have epilepsy?

  "When Chief Justice John Roberts experienced the second seizure of his life on Monday, he may have become, in medical terms, an epileptic ... The diagnosis of epilepsy, say experts, may not necessarily mean that Roberts will have to take anti-seizure medication, which can control the electrical activity of the brain, or have to be concerned that future events will impair his ability to function on the Supreme Court."

From the in-box

John and Jane Roberts at his swearing-in ceremony in 2005 (AP Photo)

-- Doctors have started using the word "epilepsy" in connection with Chief Justice John G. Roberts Jr. , who stayed overnight in a hospital in Maine after experiencing a seizure on Monday. The seizure was similar to one he experienced 14 years ago, according to a court press release.

-- Parents of children with disabilities send a few choice words in response to a recent Wall Street Journal story on special ed -- words like "union thugs" and "overpaid fat-cat administrators."

-- Researchers find a link between pesticide exposure and autism, but caution that it's too early to draw conclusions.

-- Reviewing the new reality series "Flipping Out," Ginia Bellafonte says the show at last sets the record straight on obsessive compulsive disorder.

"For years now, the comic detective series “Monk” has equated O.C.D. with intuitive brilliance. We’ve long required a corrective interpretation, and “Flipping Out” is it. Mr. Lewis isn’t a genius of anything. He’s just a delusional jerk."

-- A growing number of professionals are prescribing a new treatment to patients with depression and anxiety. They call it "bibliotherapy." In lay language, that means: read a self-help book.

"Acting normal in a world that thinks you're not" -- on NPR

This American Life rebroadcasts an hour show called "Special Ed," featuring segments on people "who were told that they're different. Some of them were comfortable with it. Some didn't understand it. And some understood, but didn't like it." You can listen to the program or download the podcast here.

From the promo:

"Ira Glass talks with a bunch of special ed students. By and large, they thought of themselves as regular kids—until each experienced a shocking moment of revelation when they discovered that they were not the same as other kids, and that the other kids already knew that...and had known for a long time."

From one of the interviews:

“You kind of think of yourself as regular until these teachers and people in high authority are telling you you’re not the same as everybody else. So you have to figure out – so okay – why am I different?”

Disability = Taboo

TV personality Al Roker recently got in trouble for making jokes about people with epilepsy. Mark Aranoff, writing in the Chronicle of Higher Education, uses the incident to examine why, in his view, disability is the most taboo subject in American culture. Here's his conclusion:

"Taboos reflect the preoccupations of the societies in which they are embedded. Disability will be verbally charged as long as we are preoccupied with the physical and emotional perfection that few of us can aspire to. We will either get over it and accept ourselves, as the Dove soap campaign for real beauty exhorts us to, or, in a future more reminiscent of another Woody Allen movie, Sleeper, we will have plastic surgery and Prozac for all, greeting more-serious disabilities with an exceedingly awkward silence."

Mark Aronoff is a professor of linguistics and associate provost at the State University of New York at Stony Brook.

In China, children with disabilities are sold into slavery

A reporter explores the sale of children, often disabled, to work as beggars on the streets in China. The news follows stories earlier this summer about slave laborers, again often people with disabilities, who are forced to work in Chinese brick factories. How will these people be affected next year when Beijing hosts both the Olympics and Paralympics? From the (UK) Observer.

To headline writers: Two thumbs down

Nominations for least favorite headlines:

Doomed from birth to death. From the (Toronto, Canada) Globe and Mail. On a story about the link between Down syndrome and Alzheimer's disease. See it here.

While it is indeed tragic that individuals with Down syndrome have a greater chance of getting Alzheimer's than the general population, it seems highly insensitive and unnecessary for the headline writers to refer to them as "doomed." Many, many people with Down syndrome are happy and productive community members; others are trying to make the most of their situations. One wonders: would a story about Elizabeth Edwards, who is living with incurable cancer, have carried a headline referring to her as "doomed"?

When an extra chromosome is one too many: Corruption to genes passed down to the baby from his parents can cause a myriad of problems. From the (Malaysia) New Straits Times. Link here.

As if babies didn't have enough problems -- now they have to deal with corruption. And very long headlines.

Unkind words wound people with disabilities and their caregivers

Hello, all. I'm back after a brief vacation.

Check out this morning's USA Today for responses to its recent column about the widespread use of the word 'retard' as an insult. The columnist, USA Today reporter Theresa Howard, made the point that the use of this common slur diminishes the dignity of the estimated 7.5 million Americans who have intellectual disabilities as well as their families.

From today's letters:

"I just don't understand why many people avoid using racial slurs but somehow think it is OK to use 'retarded.' I know that in the vast majority of situations, people are not trying to be mean; they're just oblivious. Hopefully, commentaries such as Howard's will raise awareness of just how inappropriate it is to use degrading, insensitive terms in casual conversation. Perhaps people will begin to understand that they are being disrespectful to those who have developmental disorders and to the families who love them."

Couldn't have said it better myself. The letters can be found here.

Sadly and predictably, there are also many foolish and insensitive comments now attached to the original column, including some from writers advocating for their right to free speech -- an odd and paranoid twist, considering that Howard was arguing for civility, not censorship. (Navigate back to it here.)

Prenatal screening tied to MD concerns over lawsuits: Economist

In a report from the Economist, ACOG's prenatal testing and screening guidelines are attributed at least in part to physician worries over wrongful birth litigation. See the story here:

Wanted: Perfection. Doctors try not to be sued over Down syndrome babies

Key quote:

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. 'If more tests reduce our risks, then so be it.' (emphasis mine)

What's remarkable to me is that more media attention hasn't been paid to the connection between wrongful birth lawsuits, lack of tort reform and the broadening of prenatal testing. Although ACOG has presented the guidelines as a response to requests from women, the Economist makes the point that the guidelines often are not well implemented, and many women are feeling ill-served.

From the story:

Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

The economic subtext becomes more clear when you read the most recent ACOG report on litigation here. Among the key findings from the 2006 ACOG survey on professional liability:

-- Almost 70% of ob-gyn survey respondents have made changes to their practice as a result of the affordability and/or availability of professional liability insurance, and 65% have made one or more changes to their practice as a result of the risk or fear of professional liability claims or litigation.

-- A total of 89% of respondents indicated they had at least one professional liability claim filed against them during their professional careers, or an average of 2.6 claims per ob-gyn.

-- Top lawsuit allegation made against gynecologists: delay-in or failure-to-diagnose.

In other news:

From USA Today:
A mother's view of a word that wounds: 'Retard'

From the Independent (UK):
Screening IVF embryos 'can damage birth chances'
(See the original report in the NEJM here.)
Childhood asthma gene identified by scientists

From the Guardian (UK):
Benoit son's disability questioned

From WPVI-TV in Philadelphia:
Gifts for every parent

A Tale of Two Daniels

How the WWE tried to protect its image by exploiting our prejudices

In the era of celebrity-driven philanthropy, it just might have been a non-profit’s worst nightmare. A celebrity does something ghastly, and surprise! Somebody blames the people you’re trying to help.

That’s what happened in the world of Fragile X last week when World Wrestling Entertainment tried to deflect blame for the apparent murder/suicide of wrestler Chris Benoit and his family.

Brushing aside questions about illegal steroid use, the WWE put out the word that Benoit’s 7-year-old son Daniel had Fragile X syndrome – an account that family members now dispute -- and that his disability was a constant source of tension for Benoit and his wife.

Faster than you can say eugenics, speculation about Benoit’s anguish over the boy’s “suffering” swept the airwaves and the internet, eliciting sympathy and temporarily blotting out the “roid rage” theories. Who among us can judge, wrestling fans asked one other. Perhaps dealing with a chromosomal anomaly was just too much stress. Perhaps Daniel was a “burden;” perhaps he was hopeless.

Let me add my own theories to the mounting pile. Perhaps the publicly-traded WWE was engaging in damage control. Reasoning that fans would be repelled by the specter of a celebrity turned murderer, perhaps they were banking on the hope that many might perceive a utilitarian logic in ending the life of a child with a disability. Judging by the number of Google hits that now connect Benoit’s name with the term “mercy killing,” the WWE may not have underestimated the public sense of justice.

Whether Daniel Benoit did or didn’t have Fragile X is not our business – or the WWE’s. What we should be concerned about instead is the WWE’s cynical effort to shift blame to an innocent and voiceless young boy, in effect victimizing him a second time.

In so doing, the WWE also sent hurtful messages about the many thousands of people who are living productive, satisfying and dignified lives with Fragile X syndrome, and about their families. To suggest that their lives are fraught with despair is both inaccurate and demeaning, and fuels public stigma against them.

Far from being a rare medical condition as it was described in media reports, Fragile X syndrome is shared by between 70,000 and 100,000 people in the U.S. according to the National Fragile X Foundation. If all the people who are carriers are included in that estimate – an estimated 1 in 130 women and 1 in 700 men -- the number rises to more than a million. The disorder gets its name from the long tail of the X chromosome.

While Fragile X syndrome is the most common inherited cause of mental impairment, better education and early intervention services have greatly improved prospects from what they were a generation ago. Experts say many young adults with Fragile X are now holding jobs and living independently or semi-independently, and that the trend will continue to grow.

We may not be aware of it, but it’s very likely that some of these people are among our neighbors and friends. If we are really worried about alleviating their “suffering,” then perhaps we should turn our attention to broadening the availability of accurate diagnosis and intervention services, and stepping up research into treatments.

I’ve often wondered why the public is so quick to swallow unproven assertions that families of people with disabilities are dysfunctional, and that disability in a family causes it to become violent.

Perhaps it’s a failure of imagination. If we haven’t lived with a person with a disability, we don’t know what to expect. As with raising any child, raising a child with a disability brings many aggravations as well as joys.

Studies have shown that families with disabled children report they fare no better or worse than others, and often rate themselves higher in personal satisfaction than other families. Many of them say what’s stressful is less their child’s diagnosis than the public stigma attached to disability.

Our family cherishes the friendship of a young man, also named Daniel, who has Fragile X syndrome. We greatly value his kindness, charm, sense of humor and taste in television shows (which runs heavily to reruns of “West Wing”). Supervisors in the gourmet shop where he has been working are much impressed by his enthusiasm and easy way of relating with the customers. Our Daniel has friends, a supportive family and a very active social calendar. He enjoys his life.

I only wish that Daniel Benoit might have been so lucky.

For more information, visit the National Fragile X Foundation or the Fragile X Research Foundation.

A calm, rational discussion of special education ….

…. is not happening at the Wall Street Journal.

Nobody ever said that covering education is easy, and the job only gets tougher when reporters are called upon to spin compelling yarns while evaluating complex educational trends. Factor in the limitations posed by production and deadlines, and the results sometimes aren't pretty.

Unfortunately, that's what happened on the front page of the Wall Street Journal this week when John Hechinger's story on inclusion ended up sounding more like a rant against educating children with disabilities in the general education classroom.

The story sported the inflammatory subhead “Disabled children join peers, strain teachers.” It stirred up a lot of fear but didn't provide much insight, and didn’t even begin to discuss the benefits for all students that have been documented in well-run inclusion programs. Instead, the reader was served a stew of anxiety in which programs were evaluated not for their effects on students but on teachers, and the main concern seemed to be whether the presence of children with disabilities is damaging to teacher morale.

The less-than-balanced account relies heavily on the viewpoint of a disgruntled teacher in Scranton, PA, who announces that one particular 8-year-old student has driven her to early retirement. Clearly, this woman has axes to grind. The story appears to quote from a diary she kept of the student’s actions throughout the year, but if the reporter was present to witness any of the events described he gives no indication of it.

The end result is a quick-and-dirty account of a complex subject that deserves far more thoughtful consideration and a lot less finger-pointing – particularly against children. It’s worth a moment here to remember the origins of the federal law guaranteeing children with disabilities a right to education in the least restrictive environment: thousands of children with disabilities in 1975 were not getting any education at all.

It’s also worth remembering that the law provides no requirement that all students with disabilities get the same or similar placement. Classroom placements are determined individually, which gives administrators and teachers the flexibility to serve each student’s needs.

Implementation of special education mandates since the passage of the 1975 law has been disappointing, with students ill-served as states, localities and the federal government have wasted precious time assigning blame over funding and other issues. Inclusion has worked well for both students and teachers in settings in which training and support have been provided, and in which communication has been a priority. Sadly, those situations have been the exception.

The U.S. Department of Education reported last week that after 30 years, only 9 states have met acceptable standards. That's the real story. We've thrown away time in the lives of children that can never be reclaimed. The Journal ought to be asking why school administrators still can't get it right.

POSTSCRIPT: Did anyone else cringe over the publication of the 8-year-old student’s name and likeness? That she is a vulnerable child with a disability is obvious. That she is not capable of giving informed consent to being publicly pilloried as special education’s Public Enemy Number One seems equally obvious. Regardless of what her parents may or may not have said, this assault on her dignity should not have been permitted.

AND ANOTHER POSTSCRIPT: We wonder why the Journal is suddenly worried that inclusive practices are driving good teachers out of teaching. If you read the fine print, you learn that complaints on this score don’t even make it into the top ten sources of dissatisfaction by reporting teachers. (Not surprisingly, the top gripes circle around such evergreen topics as inadequate planning time, poor salary and heavy teaching loads.) “Mainstreaming special students” comes in twelfth – not enough to keep us up nights.

Click here for letters to the Journal.

Prenatal screening panic

Dear Pat,

A dear friend's niece is facing a crisis. She is pregnant at 35 with one little daughter, and the prenatal screening tests are showing but not yet conclusively the possibility of Down Syndrome in this pregnancy. She is understandably overwhelmed. She won't have a complete report for another 10 days. Do you know what resources are available for counseling and helping a woman at this point in her life? I am sure there are many and some will presumably come from the OB-GYN, but if you have any suggestions, they would be welcome.

I have always told my daughters that in any critical situation there is time, as strange as that may sound, to still examine things and think them through. This definitely feels like one of those moments. This woman is utterly overwhelmed and I have tried to offer my friend encouragement to help her slow down, gather information, think carefully and proceed with care. The stakes on either side of her choice are very high.

What can we tell her?

Claudia
______

Yes, you're right: there is time to gather information and think it through. Unfortunately there’s a lot of confusion out there, and it seems that we’ve been much more successful in developing tests than in helping people interpret the results.

First, there’s the confusion about the tests themselves. Your friend should be aware that the prenatal screens used in the first trimester produce data in what is called a "probabilistic" format. In other words, they are not definite; they say that you may have one chance in X number of a particular result.

It's important to know that what the woman receives are odds (sort of like Saturday night in Las Vegas), and that the screens are designed in such a way that they deliver many false positives as well as false negatives. I've had email from women who have been told they had a high probability of a child with DS only to have a child without it, and women who were told their child would likely not have DS and then did have it. In all likelihood, her doctor will recommend followup testing of amnio or CVS, which will offer more definitive (although not infallible) information.

Then there’s the confusion about what a diagnosis of Down syndrome could mean. Everyone is unique, and there’s no way to predict what a person will be able to do by looking at their chromosomes. Recent advances in education and healthcare have brought about marked improvements in outcomes for people with DS these days, according to parent reports. (See "Prenatal tests put Down syndrome in hard focus" in the New York Times.) But national outcomes data is not kept, so it's understandable that medical professionals who have minimal contact with people with DS may well be unaware of progress that parents are seeing.

In a recent survey of mothers of children with DS published in the American Journal of Obstetrics and Gynecology, Dr. Brian Skotko found that parents feel obstetricians and genetic counselors fall short when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. (You can access the study here.) Mothers who received a prenatal diagnosis of DS reported that doctors did not give them a balanced view of the possibilities and realities of life with Down syndrome, and did not provide up-to-date information.

With that in mind, your friend might want to contact her local Down syndrome organization. In my experience, predictions by doctors and lists of symptoms in medical textbooks can be very limiting. It’s not until you meet other families and get current information that you begin to see the possibilities. The National Down Syndrome Congress and the National Down Syndrome Society, available on the internet here and here, may be able to help you find a local affiliate.

And if that’s not enough to think about, you should also be aware that OB/GYNs are feeling the bite of rising medical liability insurance costs as courts in some states have been awarding damages in what are being called "wrongful birth" lawsuits. With that kind of backdrop, it's understandable that many doctors are insisting that women get prenatal screening (or sign a waiver declining it) as a way of warding off potential lawsuits. Sadly, this only adds to the level of anxiety that surrounds the topic of prenatal screening.

As I'm typing this, my daughter Margaret is busily reading "Julia and Jacques Cooking at Home" by Julia Child and Jacques Pepin, looking for recipes for tonight's dinner. She has completed high school and a post-secondary culinary arts program, and is excited that she will be moving into her own apartment with a couple of girlfriends (with some help from mom and dad) later this summer.

I guess I'd want to tell your friend that in the final analysis, being a parent to any child is both work and a gift. Like many things in life, it mostly requires that we keep smiling and keep showing up. Having a few good friends also makes a world of difference.

P.S. Here's a link to a story from the Sacramento Bee the other day about a "precocious" third-grader who's performing in her local junior production of "The Music Man." Her name is Katina and she's got DS. The photos are adorable.

Note to the media: We can do better

Kudos to Susan M LoTempio for her essay "How the News Media Handicap Those with Disabilities." Writing for the Poynter Institute, a school for journalists, LoTempio rightly skewers "feel good" stories about overcoming disabilities and takes writers to task for using language that reduces people to pitiable stereotypes. She targets a recent NPR report using the phrase "confined to a wheelchair" as inaccurate and disrespectful. Also receiving a dart was a story in Editor & Publisher bearing the headline: "Deaf Photog and Blind Editor Overcome the Odds Together."

Writes LoTempio:

"Overcoming the odds" is one of several troubling formulas that journalists choose when writing about people with disabilities. The others are, sadly, making people into heroes, objects of pity or sources of inspiration. None of those formulas will ever give a full and accurate portrait of a person with a disability because it crams the individual into some preconceived notion of what his or her life is like (but rarely is).

LoTempio also offers laurels to a New York Times story about an amputee sprinter who wants to compete in the Olympics. He uses carbon blades instead of feet. (See my earlier post here.)

A comprehensive discussion of troubling stereotypes in the media would take more time than we've got, but here's a recent nominee of mine:

USA Today's story "Despite Down Syndrome, sons compete -- and win," in which the writer profiles a single woman with multiple sclerosis who adopted four children with Down syndrome. The usual upbeat quotes about "doing your best" and winning medals in the Special Olympics are highlighted. It's hard to imagine the writer finding a less typical, and more stereotypical, subject for a story. If the writer has ever encountered a person with a disability before, or has any concept of what their lives may be like, it's not apparent here. My favorite quote: "Not surprisingly, Teri, a single parent, is considered a minority, if not an exception, for doing what she does." No, do you think?

Susan's earlier essays can be found here.

Still more on the "pillow angel" saga

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her "more dignity and integrity than a fully grown female body." In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as "Pillow Angel."

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children's Hospital in Seattle admitted that the hysterectomy was illegal. See link.

McDonald's column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley's abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.

Her words:

"My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

"The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

"No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

"Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own."

PWD* reacts to prenatal screening

The Washington Post runs letters in response to "Haunting Echoes of Eugenics." Bridget Brown, a woman with Down syndrome, compares widespread prenatal screening and termination with genocide directed toward people with disabilities. Her words:

I have a full and wonderful life, and the world needs to know that I do not "suffer" from Down syndrome. Most people I know with disabilities have full and productive lives. My heart breaks when I think that I might be part of the last generation of people with Down syndrome. The world will never again benefit from our gifts. But I will continue to hold hope for people with disabilities. And I will pray for all the people who think we don't have the right to live.

Ms. Brown's letter goes to the heart of the ethical conundrum surrounding universal prenatal screening, which Michael Sandel powerfully explores in "The Case against Perfection: Ethics in the Age of Genetic Engineering" (just out on Harvard University Press). Is total reproductive choice completely beneficial to society? Ms. Brown's experience doesn't lead her to that conclusion. As a person with a disability* (PWD), she encounters daily the uninformed and negative preconceptions people have about her and the quality and value of her life.

Sandel explores the issues around reproductive choice and views it as a mixed blessing. He worries that individuals who are granted this kind of control over their children will come to be held accountable for their children's perceived flaws. The implication: that those who screen and terminate will come to be seen as "responsible" parents, thus justifying a society that lacks empathy and compassion for the lives of those who differ from accepted norms.

Taken together, the aggregation of our private, individual decisions seems to reflects a deep and undiscussed discomfort with those who are different. The implicit message we seem to be sending is that while ethnic diversity is valued and supported in our society, genetic diversity is not. How comfortable would any of us be explaining that paradox to Ms. Brown?

Further reading on this topic: "Confessions of a 'Genetic Outlaw'", by Elizabeth R. Schlitz, in Business Week, July 20, 2006.
____

It's worth noting: this is not a discussion about Roe v. Wade. It is a discussion about the paucity of informed consent in prenatal screening, and the collective social effects of individual decision-making.

Reporting on Disability with Nuance

Here's a pleasant surprise -- a story from the New York Times about disability that tells the tale with the nuance it deserves. No heroes, no victims, no crocodile tears. It's the story of South Africa's Oscar Pistorius, a paralympics athlete who wants to compete in the Olympics. He's an amputee, and uses carbon fiber blades instead of feet to tear up the track.

A quote:

" ... Pistorius is also a searing talent who has begun erasing the lines between abled and disabled, raising philosophical questions: What should an athlete look like? Where should limits be placed on technology to balance fair play with the right to compete? Would the nature of sport be altered if athletes using artificial limbs could run faster or jump higher than the best athletes using their natural limbs?"

The story uses the lens of disability to broaden the discussion about the perpetual pursuit of athletic advantage. Performance enhancing drugs, adaptive devices, and even self-mutilation get consideration here. The headline sums up the conundrum: "An Amputee Sprinter: Is He Disabled or Too-Abled?"

What's So Funny About Disability? Well . . .

By PATRICIA E. BAUER

December 11, 2005
The New York Times

SANTA MONICA, Calif. -- WHEN Edward Barbanell was growing up in Florida, he didn't have a quick retort for the kids who would bully him and call him names on the playground. "I just learned to walk away from it," said Mr. Barbanell, an actor who has Down syndrome. "They can call me what they want, but I am not a 'tard."

Now, he knows exactly what he would tell those kids: go see his performance in "The Ringer," a PG-13 comedy directed by Barry Blaustein and produced by the Farrelly brothers' Conundrum Entertainment with the active endorsement of Special Olympics. "This movie will touch people's hearts and give them a sense of hope about what people with intellectual disabilities can do," he said.

For Mr. Barbanell, the Dec. 23 opening of "The Ringer" would seem to represent an important moment in movie history. This film, as no major Hollywood film before, features a substantial number of actors who have intellectual disabilities. They are portraying reasonably competent, genuine characters - not the stereotypical victims, villains and heroes who have most often defined the disability experience in studio movies. And in a particularly striking turnabout, these actors with disabilities are playing comedy, inviting the audience to laugh with them, not at them.

Anxiety persists among some in the disability world that the filmmakers may have something other than their best interests at heart. They worry that the Farrellys' signature bawdy humor, as seen in their blockbuster hits "Dumb and Dumber" and "There's Something About Mary," could exploit and demean people who are already stigmatized, making them again the butt of the joke.

"They're sensitive, but they want to have it both ways, and that's what frustrates me about them," said Kathleen LeBesco, chairwoman of the department of communication arts at Marymount Manhattan College. She recently published a paper on the Farrellys' "contradictions of freakery" in Disability Studies Quarterly.

But Peter Farrelly argues that America needs to understand the inherent humanity of people with intellectual disabilities, and that includes seeing them make jokes, engage in hijinks and dance close to "Full Monty"-style in the shower. "My whole point in making this movie is to make people with mental disabilities accessible, make people know who they are and feel comfortable with them," he said during a recent interview in the brothers' office here.

"If you don't know someone who's mentally challenged, and you meet them, you're afraid of them because you don't know what to expect," he said. "It's not bad. It's just normal. But if you do know them, you're very comfortable."

This is obviously uncharted territory. Nobody really knows how audiences will react to seeing people with intellectual disabilities in a big-screen comedy - this is a considerable step beyond "Life Goes On," the last decade's Down syndrome-centered television dramedy - or whether they will show up in the first place.

Years of conditioning have taught Americans that it's not appropriate to stare at people with intellectual disabilities, much less to laugh at them. But what if a movie goes over adults' heads and appeals directly to teenagers?

And is it even remotely possible for these actors to pry open doors in the entertainment world so that others in their cohort may follow, as Bill (Bojangles) Robinson and Hattie McDaniel did for African-American performers in the 1930's?

These are the kinds of questions that have been floating around ever since Peter Farrelly and his brother, Bobby, received a pitch from Ricky Blitt, a writer from television's iconoclastic "Family Guy." His script idea had a simple, if explosive, premise: a guy fakes a mental disability in an effort to rig the Special Olympics.

More than five years ago, 20th Century Fox agreed to bankroll the $15 million project, but only if the brothers could secure the unqualified endorsement of Special Olympics. It was not an easy process. After an initial positive response from the Special Olympics president (and now chairman), Timothy P. Shriver, the Farrellys spent a couple of years in negotiation. They pared out some situations (a strip club) and some language (that can't be printed here). Dialogue was scrubbed. ("Mentally challenged" and "intellectual disabilities" were in. "Mentally retarded" was out, except in special circumstances.) There were arguments. During production, a Special Olympics representative stayed on the set to make sure nothing untoward slipped in.

The resulting film stars Johnny Knoxville, best known as the star of MTV's gross and dangerous stunt series, "Jackass," as the anti-hero. It would not be giving away too much of the plot to reveal that he is befriended by disabled athletes whom he comes to admire, and that he sternly admonishes another character who labels his new friends " 'tards," a variant on the widely used playground insult "retard."

The hope is that Mr. Knoxville's high-octane persona will draw in the adolescent boys whom Mr. Shriver sees as susceptible to an attitude transformation. "We're taking a risk with humor that might be edgy, and language like 'retard' that might be offensive," said Mr. Shriver, who is executive producer of "The Ringer." "I think it's time to zing it and zap it and make it go away."

Supporting Mr. Knoxville are five actors with intellectual disabilities in speaking roles, including Mr. Barbanell as Mr. Knoxville's wisecracking roommate, and Leonard Flowers, a hunky Special Olympics athlete who has earned two gold medals in worldwide tennis competition and was immortalized on a Wheaties box. An additional 150 Special Olympics athletes are featured as extras, and the film includes scenes in which an out-of-shape Mr. Knoxville struggles to keep pace with them.

The soundtrack also includes some tracks from the Kids of Widney High, a band composed of students from a special education school in Los Angeles. Their big number? What else: "Respect."

Attitude research recently conducted by the Center for Social Development and Education at the University of Massachusetts Boston underscores the band members' implicit message: they could definitely use a little respect. A national survey of 6,000 middle school students found that young people consistently underestimate the abilities of peers who have intellectual disabilities. In addition, the survey found that 67 percent of young people surveyed would not spend time with a student with an intellectual disability if given a choice, and almost 50 percent would not sit next to one on a school bus.

These findings come 30 years after landmark federal legislation opened the schoolhouse doors to students with disabilities, granting them the right to a public education alongside their peers. Although these students have now been educated in public schools for more than a generation, are performing at higher levels than ever before and are increasingly graduating from high school, they still face substantial stigmas.

Research financed by Special Olympics suggests that negative stereotypes in movies, television and newspapers are a big part of the problem. Another recent study, financed by the Screen Actors Guild and performed by the National Arts and Disability Center at the University of California, Los Angeles, reported that people with disabilities remain "virtually invisible" in American film and television.

That is certainly not the case in the world of the Farrellys, whose comedies use disability as a paradigm to explore life's quirkiness. Actors with real-life disabilities appear in virtually every film, both in featured and incidental roles, to the extent that it is often difficult to tell exactly who is disabled and who isn't.

"We have used a lot of disabled people in our movies, and I'm not exactly sure why," Peter Farrelly said. "I know one reason is I happen to know a lot of disabled people. I am amazed more people don't."

Among those he knows best is his childhood friend Danny Murphy. One summer day in 1974, when the two young men sailed with friends to a familiar spot in Oak Bluffs Harbor on Martha's Vineyard, Mr. Farrelly climbed onto a piling and prepared to dive into the water. Mr. Murphy waved him off, took his place and dove in himself. He struck a hidden silt mound and broke his neck. The injury left him a quadriplegic.

YEARS later, when the first Farrelly film came out, Mr. Murphy asked sharply why it didn't include anyone in a wheelchair. "I'll never forget Pete's face," Mr. Murphy said. "It was as if I had just told him that his parents had died."

WHEN the next movie came around, Mr. Farrelly invited Mr. Murphy to appear. In "Kingpin," he played the bad guy who flipped the switch to chop the bowler's hand off, and he has appeared in virtually every Farrelly film since.

Another recognizable Farrelly star is Rene Kirby, an actor with spina bifida whose self-deprecating and humorous performance provides much of the heart of "Shallow Hal." "When I meet a guy like that, I feel so blessed to come across such a spirit," said Mr. Farrelly, who grew up in a Roman Catholic household. "It makes you feel small. It just makes me want to put him in the movie. And it's not just any exploitative thing. It's not like, you know, this will be odd. It's just that I'm impressed with a guy like that, and I want to put that spirit on-screen."

Then there's Ray (Rocket) Valliere in "Stuck on You," the intellectually disabled waiter who works in the twins' hamburger joint and provides a comic foil for the film's stars. Scores of other people with disabilities turn up in Farrelly films where you don't expect them, or may not even know they are there - an amputee and a woman with a mobility impairment who play casting agents in "Stuck on You," for instance.

Of course, it is true that Farrelly films have won many laughs at the expense of high-priced actors in disability drag. In addition to "Dumb and Dumber," think of Woody Harrelson as "Kingpin's" handless bowler, and Jim Carrey as a man with a split personality in "Me, Myself and Irene," a film that the National Alliance on Mental Illness accused of stigmatizing schizophrenia.

(In the Farrellys' office, a California Media Access award recognizing the brothers' "lifetime commitment to the advancement and inclusion of people with disabilities in the media industry" is displayed. The office, which is wheelchair accessible, also contains two life-size sculptures of the human buttocks and vestigial tail that were a key plot point in "Shallow Hal.")

Still, Farrelly films have consistently tried to portray disabilities in a normalized and sympathetic fashion, free of inflated admiration, condescension and crocodile tears.

The conjoined twins in "Stuck on You" are a couple of sensitive, regular guys whose disability proves to be both a hindrance and a help. The main character in "Hal" learns that his true love's disability, morbid obesity, should not keep him from appreciating her beautiful inner self. And in "Mary," the audience is cued to assess the fundamental goodness of characters by judging how they relate to Mary's disabled brother.

This time around, the Special Olympics' Mr. Shriver is hoping the conundrum posed by the Farrellys' comic touch is irreverent enough to appeal to the target teenage demographic but not so blatant as to alienate the general public or the organization's traditional supporters. It's a delicate balance, and the stress occasionally shows. "I haven't gotten a lot of hate mail in this job," he joked. "That may change."