ABILITY Magazine Herschel Walker by ABILITY Magazine

VOLUME 2008 HERSCHEL WALKER

JUNE/JULY

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2008 Herschel Walker June/July MAGAZINE

ABILITY

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING E DITOR Pamela K. Johnson

M ANAGING H EALTH E DITOR E. Thomas Chappell, MD

H EALTH E DITORS

Gillian Friedman, MD Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)

E DITORS

HUMOR — Man’s New Best Friend

GREEN PAGES — An Old Fashion Clothesline; Faucet Aerators

DRLC — A Place Called Home

DOCUMENTARY — Including Samuel

COVINGTON — Nobody Walks In Texas

PATE — Winter Sports Clinic Highlights

OUCH! — Relief for Fibromyalgia

ABILITY ON ASSIGNMENT — Qatar, Shafallah Forum

GAIT RESEARCH — Using Chaos For Good in the Middle East

HERSCHEL WALKER — On Getting Help and Getting Better

INCLUSION — Making Strides at the Boys & Girls Club

BEST PRACTICES — Sprint Has Your Number

UCP — A Ride to Raise Funds and Awareness

CROSSWORD PUZZLE — Guess Your Best

ESSAY — Spread Respect

EVENTS & CONFERENCES

Walker Bounces Back p.42

A Return to Qatar p.32

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G RAPHIC A RT / I LLUSTRATION

Scott Johnson Paul Kim Melissa Murphy - Medical Illustration Man’s Old Best Friend p.8

P HOTOGRAPHY

Danny Tunner (Walker cover) Chris Apedaile

T RANSCRIPTIONIST Sandy Adler

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg Who You Gon Call? p.56

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

EDITORIAL

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HEADLINES — Splel Chceker, Drum Therapy, HBO Film

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NON-PROFITS Samuel p.14

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HEALTHY ENTERTAINMENT

he movie Michael Clayton received the “Bipolar Disorder Depiction Award,” while Georgia Rule and TV’s The Simpsons were also honored for providing information about health and social issues at the recent12th Annual PRISM Awards. Music, comic books and interactive entertainment were also recognized for their commitment to accurately depicting addiction and health issues by the Entertainment Industries Council, Inc. (EIC), the Substance Abuse and Mental Health Services Administration (SAMHSA) and the FX Network. “Today, accurate media portrayals of recovery among those suffering from addiction and mental illness offer realistic hope to people with these illnesses as well as to their friends and loved ones,” said Terry Cline, Ph.D., a SAMSHA administrator. “With over 440 entries, this years PRISM Awards is a significant statement from the entertainment industry,” said EIC president and CEO Brian Dyak. “Not only is our industry working to put forth accurate messages through creative stories, but we are also providing powerful messengers through the actors’ characterizations.” ABC’s Grey’s Anatomy, One Life to Live and The View took home trophies. NBC’s ER, a CBS public service announcement and HBO’s Sopranos, which won or its depiction of mental health, were also recognized. Winners also included: James Denton of ABC’s Desperate Housewives, Casey Affleck, who wrote and directed Gone Baby Gone, and Sally Field and Dave Annable for Network’s Brothers and Sisters. “By spreading the truth about recovery and the benefits it holds for all members of our society,” Cline added, “the entertainment industry has been an effective force for positive change.” www.prismawards.com

SCORE ONE FOR HEALTH ED

llergan, Inc. recently teamed up with the National Hockey League’s (NHL) Rem Murray to launch the BOTOX Dreams campaign, which recognizes people living with the challenges of cervical dystonia (CD).

The condition is a chronic, painful neurological disorder that is characterized by involuntary spasms of the neck muscles that cause twisting, repetitive movements or abnormal postures of the head, and affects about 125,000 Americans. It is the third most common movement disorder after Parkinson’s disease and tremor. Murray was forced into early retirement from the NHL due to the debilitating effects of CD. Fortunately, following physical therapy and treatment with BOTOX (Botulinum Toxin Type A), he was able to return the Edmonton Oilers and played an important role in the drive to the Stanley Cup Finals in 2006. “I was 31 years old and living my childhood dream of playing professional hockey when I was diagnosed,” said Murray, who set an NHL record for most regularseason games played in one season. “I thought my career was over. I joined this campaign because I’m committed to raising awareness of CD. I want to help and give hope to others who are living with this disease and suffering in silence.” As part of the campaign, Allergan will provide grants of $10,000 each to fulfill the philanthropic “wish” of four CD patients. The “wish” is to provide a service and/or additional resources to a philanthropic and communityfocused program of their choice, such as community libraries, senior centers, police and fire departments and/or charitable organizations. Entries must be received by July 21, 2008. www.botoxmedical.com

MEDICATION MISUSE

quarter of American seniors who are disabled reported using at least one prescription drug that was inappropriate for their age, according to a recent report by the Agency for Healthcare Research and Quality (AHRQ). Thirty drugs, which included Xanax, Demerol, Darvon and Procardia, proved ineffective or posed a high risk of side effects for that particular population. Only about half as many (13 percent) elderly people without disabilities reported inappropriate medication use, according to 2004 data. AHRQ, a Federal agency charged with improving the quality, safety and effectiveness of American health care, found that misuse of prescription drugs was more common among people with complex disabilities (27 percent) than those with basic disabilities (23 percent). www.ahrq.gov

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DRUM THERAPY

he world’s largest manufacturer of high quality drumsticks and drum accessories has joined forces with DAD (Drums and Disabilities) to launch a Global special education curriculum called the Vater Percussion/DAD Program Drum Therapy Initiative. The campaign helps children with Autism, Dyslexia, ADD, ADHD, Tourettes Syndrome, ODD, Aspberger’s and other disabilities develop and enhance retention, coordination, self-esteem and physical and cognitive functioning through drumming. “Statistics indicate the percentage of disabilities present in children has increased over 47.9 percent over the past 10 years,” said Pat Gesualdo, Vater Percussion Special Education Program Director, and DAD Program President/CEO. “The significant growth of the disability population signals an opportunity to meet the needs of these youth.” As a result, psychologists, occupational therapists, physical therapists, music therapists, special education teachers and drum instructors throughout the world are using drum therapy to help their special needs students and patients develop physical and cognitive functioning. Vater Percussion will help promote this global education initiative with an exclusive: www.vater.com www.myspace.com/patgesualdo www.myspace.com/dadprogram www.myspace.com/vaterpercussion

YOU’RE HIRED!

ontage Resort and Spa in Laguna Beach, CA, was honored recently for its role in providing employment for men and women with developmental disabilities. The resort received the Employer Award from the California Department of Rehabilitation. Montage partnered with Vocational Visions, a Mission Viejo, CA-based nonprofit that provides a range of supportive services to Orange County men and women with developmental disabilities. Vocational Visions helped the resort train the workers. “The entire Montage staff is inspired by the hard work and dedication of our Vocational Visions associates,” said Carol Reynolds, director of Human Resources for Montage Laguna Beach. Founded in 1974, Vocational Visions daily serves over 400 adults with a wide range of disabilities. www.montagelagunabeach.com www.vocationalvisions.org

A SPCEIAL SPLEL CHCEKER

hotit offers unique writing and reading online services for people who suffer from dyslexia, dysgraphia or people who are not native-English speakers. Ghotit’s first service is an online context sensitive spell checker. Standard computer spelling and grammar checkers are designed for the needs of the general population who demonstrate average spelling abilities, and whose spelling mistakes closely resemble the requested word. Unfortunately, conventional spell checkers don’t work for everybody. The Ghotit team has developed unique spellchecking and spell-correcting algorithms designed for the dyslectic community. Testing of the spelling assistance program has resulted in 90 percent success. www.ghotit.com

FROM SILENCE TO SOUND

ear and Now, currently showing on HBO, chronicles a couple’s decision to undergo risky cochlear implant surgery. Irene Taylor Brodsky’s personal film memoir won an audience award at Sundance, and chronicles her parents, Paul and Sally Taylor’s journey from a comfortable marriage of silence into a new, complex and challenging world of sound. Both 65 and deaf since birth, they were pioneers in the deaf community. Sally worked as a teacher and college secretary, and lent her expert lip-reading skills to law enforcement investigations, while Paul, an engineer and retired professor, helped develop TTY, a widely-used telecommunication device for the hearing-impaired. The film is a love story about two people who found one another and grew together, their bond strengthened by the challenges they faced and overcame as a couple. The story also recounts their childhood years spent learning to communicate in a special school, experiencing the stigma around deafness, and overcoming the challenges of being deaf parents of hearing children. Hear and Now also explores the psychological dimensions of adapting to the challenges of hearing for the first time. “It’s like a hammer in my head—bang, bang, bang!” Paul says of a flock of geese flying by. Sally, enchanted by her lakefront surroundings in upstate New York, delights in the sound of water flowing gently over rocks. www.hbo.com/docs/programs/hearandnow/index.html

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HUMOR THERAPY

hat in the world would we do without computers? I could see not having a phone. Who likes to make small talk with bill collectors anyway? I could even see not having a television. Believe me, I can make it in this world without Project Runway. But I can’t live without my computer. I don’t know how I got into such a symbiotic relationship with this technological beast, and yet she’s become my best friend in the whole, wide world. I haven’t forgotten the old days when I used a typewriter, and spent half my time correcting every mistake with Whiteout or correction tape. It would take me an hour to write a paper and three days to fix the misspelled words. I so remember having to look up information in a, uh, book. (Those things with pages between the covers.) How the encyclopedia sales people must despise Google. Those were horrible times, when you actually had to know the alphabet by heart. Computers are simply amazing. You can further your knowledge of any subject in a matter of minutes. Last week I found out that the Queen of England was actually a real woman. Very different from the queens of America. I also read that you can clear up acne by drinking bleach. (I’ll just soldier on with my zits.) You can even find out within seconds when Britney Spears went to the bathroom. How cool is that? My computer knows me better than anyone. It has me by the Internet cable. If it wanted to blackmail me, there’d be nothing I could do. It knows where the bones are buried. My computer even knows that I listen to The Carpenters and Celine Dion. Definitely, not secrets I want out in the open. It knows what I’ve plugged into my search engine. In my defense, I was just curious about erectile dysfunction. As for the pornography, I needed to make sure that my bank-teller sister wasn’t moonlighting again.

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Okay, we finally hit the hot-button subject. It’s hard to ignore porno sites when you’re constantly bombarded by skimpy pictures of chicks in lacy undies, or such subject lines in your mailbox as “busts loose and panties free.” This stuff can pop up anywhere. (The porno sites, I mean.) For instance, if you put “refinancing my home” into Google, one or two of the searches will say “refinancing girls in thongs.” You try, but you can’t fight this stuff. We’re also harassed with ads: Crap that pops up when you’re in the middle of researching something really important, like “untraceable poisons.” These ads— everything from Viagra to mutual funds—are annoying. I wish that pop-up Scottrade helicopter would crash. Obviously, these ads are intended to get you to purchase things. You don’t even have to leave your home to shop. That’s right ladies, you can do damage right on the computer. No more having to drag a kicking and screaming man to the mall with you. All the clothes you need are right there on the Internet. Just put your guy’s credit card number on the shopping site, and 48 hours later you’re wearing that new blouse. I know it’s not as much fun as putting your fella through the hell of watching you try on things at the mall, but then again you don’t have to put yourself through the hell of filling up your tank with $4 dollar a gallon gas. Everything we own is now on our computers. Our documents, movies, songs, pictures, financial statements. We pay bills on line because check writing is exhausting, and because one click of the button and you’re done. It leaves you little time to contemplate how you’re actually going to cover the funds. We even put our home movies on the computer for the world to see, as if the world isn’t bored enough. I can’t describe what it’s like to watch my three-year-old daughter dance in the kitchen while the dog runs around her. Wait, yes I can, it’s stupid!

On the other hand, I don’t really mind the videos of teenage clowns skateboarding off rooftops. (They probably won’t be with us too much longer, anyway.) Why make a fool of yourself in private, when you can go public and show the world what a jackass you are? YouTube has every video clip that you can think of, and two or three of them are actually good. Which brings up another topic: Every time you turn around, your computer proves to you that it can do something totally new and amazing. At first you could just type documents and print them out. Now you can steal music, edit video, play games, “fly” over someone’s house and even find out what it’s worth. You can research medical cures, too. Just don’t expect a moneyback guarantee. You’re on your own there, Pal. How can anyone doubt Darwinism? Computers are clear evidence of evolution. My biggest fear is that one morning my computer will blurt out, “Hello Hal, what’s on the agenda for today?” The downside of these machines are the technical problems. You’re in the midst of doing something—usually extremely urgent—and the damn thing freezes up. Your heart begins to race. You frantically strike the keys. You swear. You pray to God. You swear again. You slap your computer. Finally, you use all your technical knowledge and, as a last ditch measure, you unplug the thing, and then plug it back in. It’s just got to work! Nope. Now your life is on hold until your 10-year-old neighbor gets home from school, and comes over to do whatever he does while you sit there and say, “Yeah, I was gonna try that.” If you are diagnosed with cancer, Lupus or syphilis that’s bad, but not as bad as when your computer gets a virus. Everything could be destroyed or stolen. It’s weird though;, thieves always steal funds out of your account, but never take your debt. How I wish they would break into my bank account and pay off my credit cards. We need more modern-day Robin Hoods online. OMG, the email thing is fantastic. What a great way to piss away the day. Nothing like sitting at work and being paid to read jokes or look at pictures of naked people on mo-peds. Email is also good for keeping in touch with that old friend, so you don’t have to visit. You even have time to think up a fool-proof excuse. “Oh, I’d love to see you, but that weekend I’m cleaning the cat box.” These are the peeps that you like to have as back up in case you visit your hometown and need a place to stay, but don’t have money to shell out for a hotel room. The other great thing about emailing is that you no longer need to make that dreadful phone call face-toface. You can simply fire off a text message saying you still don’t have the money quite yet, or let the boss know that you won’t make it into work because you have a scratchy throat aka a helluva hangover.

Email allows you to laugh at jokes that you can no longer laugh at in public. There’s always that friend who must forward you everything that comes their way. It might be a prayer that could change your stinking life and make you a millionaire—if you forward it to 10 people. It could also be a sappy story about other people who have more of a stinker life than you do. Don’t you just love those? Sometimes you get something that has a moral to it and is supposed to make you ponder. Can you say trash bin? We can’t forget what the computer has done to bring people together. I’m talking about dating sites. You know, where people put up pictures when they were 20 years younger and weighed 60 pounds less, claiming how much they value honesty in a relationship. Everybody’s profile is of the perfect human being. He or she describes how much they like to exercise, read books, avoid fast food and spend time with that special someone with whom they can “just be themselves.” (Hey, being themselves is what got them kicked out of their last relationship.) Once you’ve found the picture of your dream lover, you trade a few emails to begin a new relationship. If you’re a girl, you’re hoping to meet a man with money. If you’re a man, well, you’re just hoping she’s not into that long-term thing. Soon you take it to the next level— Instant Messaging. Whoo-hooo. The best thing about IM’ing is that you’re completely hidden from that person, and so you have ample time to think up a good lie. BABYLUV: “Why did it take you so long to answer iftell me you were married?” TOTALDAWG: “I had to go in the other room and vacuum the rug. When you say married, how do you mean that?” In the old days when you talked to a potential date on the phone, every “um” and “ah” gave away your deceptive replies. With IM’ing, the skies the limit. It’s addictive. You rush home from work, exited and horny, hoping to spend your evening IM’ing this new Internet love. The steam builds and, finally, the only way to cool your jets is to actually meet this person face to face. That’s when the fairy tale begins to unravel. Still, we’ve got no choice but to surrender to our computers. We can go days without our car or our spouse, but we can no longer live without our laptops and desktops, nor our access to the all-knowing, all-seeing, omnipotent Internet. Could you imagine a world without the computer? It’s simply unfathomable. What would the human race do? Spend more time with family? Perform the jobs they were actually hired to do? Read ABILITY Magazine? I shudder at the thought. “Ham on a Roll”

by Jeff Charlebois ABILITY 9

MIX IT UP

ink faucets can gush several gallons of water per minute, especially when little ones splash around instead of wash their hands, which you sent them in to do 20 minutes earlier. To stem such a wasteful tide, consider installing aerators in your faucets. These devices mix air with water as it leaves the spout, reducing flow rate and increasing wetting efficiency. Aerators have flow rates that range from .5 to 2.75 gallons per minute (gpm). Even the latter can reduce water waste significantly. Of course, you want some water pressure, right? So 1 gpm is probably the lowest acceptable flow rate for bathroom sink use, and a flow rate of 2.5 gpm will work best for the kitchen. With a price tag of $3 to $10 each and potential savings of 100 gallons of water per year, per faucet, why aren’t you on your way to the hardware store to stock up now?

DEEP SLEEP I think most of us believe that our screensavers conserve energy, as well as prevent monitor wear and tear. Not so fast. A screensaver that displays moving images consumes just as much electricity as when your screen is in the active mode, and a blank screensaver is only slightly better. Dang! The best screensaver also happens to be the biggest energy saver. It involves turning off your monitor when you’re not using it. Your next best option is to use your computer’s power management feature to automatically shut the monitor down when it is not in use. Speaking of which, how often to you walk away from your computer for hours at a time? I know I do. During those periods, your desktop or laptop continues to chug away, eating up oodles of energy. This is where a quick trip to your Control Panel comes in handy. For PC users, go to your Power Options dialog box and choose the lowest Monitor, Hard Disk and System Standby settings that you can live with. The Environmental Protection Agency estimates that using a computer’s “sleep mode” reduces its energy consumption by 60 percent to 70 percent. For Mac users, hold down the Apple icon, scroll down and select the Sleep option. Also, despite what you may have heard, leaving your computer on overnight is far less efficient than shutting it down and booting it up the next day. When you turn off your system and, even better, cut off the power source via your power strip, you lower energy usage, reduce mechanical stress and prolong the computer’s life.

HANG OUT Sometimes to move forward, you must look back. In this case, it’s to the age-old practice of hanging your laundry out to dry. It was an idea that I tossed around for a while, and finally acted on. Besides being kinder to the Earth and saving oodles of energy, over a six-month period line drying can prevent 700 pounds of carbon dioxide from escaping into the environment. Clothes dried on lines also last longer and smell better, too! Bonus feature: Kids dig hanging laundry. A couple of tips regarding clotheslines: Plastic rope won’t sag over time the way regular cotton rope will, and plastic clothespins last much longer than their wooden counterparts. Also, tossing your towels in the dryer for a few minutes after taking them down from the line will help make them softer and less stiff. I invested in an umbrella-style clothesline, and I love it! If you don’t have much room, there are smaller, more compact versions. On a warm day, I can get an entire 10

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load up, dry it, take it down and put it away in about the same time it would take to dry the clothes in the dryer. Besides, there’s something wonderfully peaceful about spending a few minutes out in the sunshine, listening to the birds sing and hanging laundry. Granted, you may feel like your grandmother, but at least your skirt won’t be pulled up under your armpits—unless you go in for that look.

TOILETRY BAG CHECK Ever wonder what, exactly, is in your fave shampoo, antiperspirant or lotion? Ever wonder if there’s something in there that might (gasp!) not be in your best interest? While you may not be shocked by the presence of petroleum, what about lead? Mercury? Cow parts? Or human placenta? To find out, visit Skin Deep, the Environmental Working Group’s database of cosmetic safety. Skin Deep allows you to search by company and product type and/or name. It gives you a 0-10 score, with 0 being best and a 10 meaning you might as well be washing your face with nuclear plant run-off water. Website topics include information on packaging, ingredients, disease and toxicity levels. One of the best features is the “What not to buy” section, which you can find in the website’s research area. If nothing else, steer clear of these nasties. Some are just flippin’ scary. Even more important to parents is the Children’s Products Guide—a link in the upper right hand area of the homepage. “Due to gaping loopholes in federal law, companies can put virtually any ingredient into personal care products,” the website states. “Even worse, the government does not require pre-market safety tests for any of them.” Take note: Just because a product is organic or natural doesn’t mean it’s completely safe. Believe me, I have a few beloved cosmetics that have made a quick exit from my daily routine. by Kristen McCarthy Thomas To access Skin Deep and info on cosmetics: www.cosmeticdatabase.com The Environmental Working Group www.ewg.org Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern California. She leads her company’s Environmental and Sustainability Task Forces, helps its 70-plus associates “green up” and writes a related blog at www.just2hands.blogspot.com ABILITY 11

A PLACE CALLED HOME

e all need homes that we—and those who visit us—can get around with ease. This is important for families as well as communities. The disability rights movement has always been a champion of accessible housing and independent living. Too often, however, society has assumed that people with disabilities would simply live in nursing homes or rehabilitation centers. One important way that homes often fail to meet our needs is that we are unable to use walkers, wheelchairs or scooters to enter the home, go to bathroom or maneuver around the kitchen. Stairs, which are still built into many homes, can pose additional barriers. They not only block the path of persons who use wheelchairs and walkers, but also many seniors who can no longer continue to live in or enjoy their homes or to visit friends, relatives and neighbors. Stairs present a problem for mothers with infants in strollers, and for students who use rolling bag to carry books. Unless society makes changes now, people with disabilities will continue to be non-integrated members of society. States and local communities must enforce current laws and enact new ordinances to ensure that accessible homes are built and readily available. Only by working together can we encourage changes that ultimately benefit us all. An accessible home is one that is designed with such special permanent features as grab bars in the bathrooms, which allow people with some disabilities to live there. An adaptable home allows an owner to adjust a unit to suit the access needs of the resident. For example, an adaptable home would have reinforced walls around the toilet so that grab bars could be installed. Accessibility and adaptability features are inexpensive to build into newly constructed dwellings, and there are an increasing number of products that are beautiful, architectural and functional. A terrific example of incorporating attractive accessible element is the Louvre Museum in Paris, which made a wheelchair lift a centerpiece in the middle of the iconic landmark. The lift’s round, steel and glass design operates through the middle of the site’s spiral staircase. Though not a housing example, the lift represents how accessible elements, and even those that stand out, can be incorporated into structures with style. If accessible, yet elegant design elements are incorporated from the beginning, consumers may begin not only to accept, but seek out these features in their homes. Some federal laws require these elements be installed in newly constructed apartments and condominiums. For example, the Federal Fair Housing Act applies the concepts of adaptability and accessibility to seven key areas: • Accessible building entrances on an accessible route • Accessible public and common-use areas • Usable doors • Accessible routes into and through the unit • Light switches, outlets, thermostats and other environmental controls in accessible locations • Reinforced walls in bathrooms for later installation of grab bars • Usable kitchens and bathrooms The Department of Housing and Urban Development (HUD) has devised a useful and informative design guide that explains the requirements for construction of multi-family residences, including apartment buildings and condos built after 1991. While the Fair Housing Act will improve the situation in certain circumstances, we will need a much broader application of disability access standards as the population grows. Some states and localities are thinking ahead. For example, California state law requires that developers of new housing provide to buyers a list of universal accessibility features that would make the home entrance, interior routes of travel, kitchen and bathrooms fully accessible. Additional features include visual doorbells, accessible levered door handles, lowered closet rods and shelf, sink and countertop workspaces that can be repositioned or enhanced by a contrasting-edge color. On the floor level, contrasting designs can mark accessible routes and work areas. Anti-scald devices in plumbing 12

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fixtures and under-cabinet lighting in bathroom and kitchen areas, for instance, can prove important safety features. If California can respond to consumers’ requests and require a developer to provide elements beyond those outlined by the Fair Housing Act, other states could as well. These benefits may also add value to a home and enhance sale and resale prices. This may be especially attractive to Baby Boomers who are growing older, and often caring for aging parents. Some cities are responding to this need by requiring that new developments include a minimum percentage of accessible or adaptable housing. Murietta, CA, for instance, enacted a landmark ordinance that requires developers to make 15 percent of new homes and rental units accessible to people with disabilities. These dwellings include level thresholds so wheelchairs and walkers can pass easily, walk-in showers on the ground floor, wide doorways and hallways, and reinforced walls for grab bars. These requirements, which are relatively inexpensive, can be incorporated stylishly and prevent the need for more costly adjustments later; they also fall roughly within the guidelines for “visitable” housing standards. As was mentioned earlier, the goal in that instance is to provide features that allow guests with disabilities to come a-calling, while allowing the resident to remain in the housing over time as his or her physical needs change. In general, visitable homes comply with basic access requirements and include at least one entrance with no steps, 32-inch clearance through all interior doors (including bathrooms), and at least a half bath on the main floor, according to the National Organization on Disability. The intention is that a person with a disability can visit without having to be lifted up stairs, can enjoy a meal and be able to use a first floor restroom. To ensure a continuous supply of accessible housing, advocates must continue to monitor and enforce the Fair Housing Act and other laws of its kind. Now the pressure must be brought to bear on more single-family residences. Several ordinances require visitability features in housing that receives local public funding. The first ordinance of this kind was passed in Atlanta in 1992, and requires certain visitability criteria for new single-family dwellings, duplexes and triplexes that receive city assistance. By 2002, more than 600 homes had been built in Atlanta under this ordinance. Naperville, IL, and Pima County, AZ, are also among the few localities that require visitability features in new singlefamily homes. Widespread availability of accessible housing can mean the difference between a population that is an integrated, vibrant component of society, and one that is segregated from family and friends and dependent on others or the government. Progress doesn’t happen by chance. It takes a concerted, sustained effort. The good news is that best practices exist and we can and should learn from them. From the accessible homes of small town Murietta, CA, to the accessible taxis of a great London metropolis, we have glimpsed what is possible. by Eve L. Hill and & Shawna L. Parks Eve L. Hill is the former executive director of the Disability Rights Legal Center, and Shawna L. Parks is director of DRLC’s Civil Rights Litigation Project. www.disabilityrightslegalcenter.org

The Mission of the Disability Rights Legal Center, formerly the Western Law Center for Disability Rights, is to promote the rights of people with disabilities and the public interest in and awareness of those rights by providing legal and related services. We are located on the campus of Loyola Law School in Downtown Los Angeles and work with Loyola Law students in all of our programs. ABILITY 13

Isaiah Habib (then 7), right, comforts his brother, Samuel Habib (then 4), in the intensive care unit of Mary Hitchcock Memorial Hospital. Samuel had recently come out of a medically induced coma. Photo(s) Dan Habib, from his documentary film Including Samuel

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our years ago, one of my sons lay in a medically induced coma. Samuel was four years old and had developed pneumonia from complications following a tonsillectomy. As I waited by his bedside, one of his doctors, Dr. James Filiano, encouraged me to photograph the experience, perhaps as a way of managing my fear. That was the moment I began to move towards documentary filmmaking, which was a new direction for me professionally and personally.

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Samuel Habib sits on the lap of his father behind the steering wheel of his grandfather's sea plane as they prepare for flight.

Photo by Sage Wheeler

L to R: Isaiah Habib (now 11), Betsy McNamara, Dan Habib and Samuel Habib (now 8)

Soon after, I began working on Including Samuel, a 58minute documentary that was released last year. As a father and as a director, my experience with the project helped to calm my fears, while pushing me to examine my biases. The film became my outlet for processing a new reality in our lives: We had a child with a disability. When Samuel was about one, we found out that he had cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair, and it’s difficult for him to talk. My wife Betsy and I would stay up nights, comparing notes: What did Samuel do better that day? What did he do worse? We weren’t new parents; we had an older 16

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Samuel high-fives Senator Barack Obama.

son, Isaiah, who was then four. But our youngest child’s disability tested us in new ways. “How can he get a full education and go to college when he can’t hold a pencil?” Betsy wondered aloud. Maybe Samuel’s inability to hold a pencil wouldn’t be such a big deal. What if his condition were simply considered another version of “normal”? What if he participated in everything that everybody else did? I made Including Samuel to chronicle our family’s efforts to mainstream our son into our neighborhood school, into social activities intrinsic to our community and into the daily routines of our family—every aspect of life. This central thread runs through the film. I wanted audiences to get to know Samuel, who wrestles with his brother, loves t-ball and wants to be an astro-

naut when he grows up. Yet he is only eight, and relies on others to continue to include him. This will likely become more and more challenging as he gets older. I also made the film to learn from the choices other people with disabilities and their parents have made. I wanted to see how these choices have shaped their lives. So Including Samuel also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana and Emily Huff, along with their families, educators and their communities as a whole. This tale began 20 years ago when, as a newbie staff photographer for the Concord (NH) Monitor, I photographed

a story at one of the first local elementary schools to include kids with disabilities in mainstream classes. I cared about the topic, but it didn’t have much relevance to me at the time. Today, Samuel is in second grade at this school, Beaver Meadow, and I think about inclusion every day. As Samuel’s dad, I am forced to look at my own prejudices. In years past, when I saw people who couldn’t walk or talk, I often assumed that they weren’t as smart, as capable or as worthy of getting to know as others who did not have these disabilities. Now I wonder Is that how the world sees my Samuel? Recently, Betsy and I decided to attend the Disability Leadership Series at the University of New Hampshire

Photo Lori Duff/Concord Monitor

During a t-ball game, Samuel uses a “Bronco” all-terrain walker to hit and get around the bases.

Samuel, at 3 years old, sits in his supportive corner chair and smiles at a school friend.

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Emily Huff of Concord, NH, looks in the mirror wearing a cape she created. Huff has schizophrenia. “It gives me courage,” she said of the cape.

Keith P. Jones turns on a boom-box with his foot while teaching teenagers in a Boston music and theater workshop. Jones, who has cerebral palsy, is a leading disability rights activist and hip-hop artist.

Alana Malfy walks down the hall at Pembroke (NH) Academy, a public high school. She is part of a joint program between the school and the University of New Hampshire’s Institute on Disablity that works to fully include students with the most significant disabilities into regular classrooms.

Nathaniel Orellana, a firstgrader who has autism, does a greeting exercise at the Haggerty School in Cambridge, Mass. The school has been recognized as a model for inclusion of children with disabilities.

Institute to learn how we could be more effective advocates for Samuel. We heard from disability rights leaders such as Norman Kunc, who spoke about his “right to be disabled.” He told us that if he were offered a pill to cure his cerebral palsy, he wouldn’t take it. “I would have to create my identity all over again,” he said. “I like who I am, I like the work I do.” The Leadership Series helped us to see Samuel’s disability as an intrinsic part of who he is. My hope is that my film will inspire the public—especially anyone connected to education—to talk about inclusion in a more informed and innovative way. I also hope they will get to know my son at the same time. Making this film helped me envision the life we want and expect for Samuel. We have a supportive network of teachers, therapists, relatives and friends who help us work towards that goal every day. And there is Samuel himself whose smile and persistence make clear his own vision of happiness. 18

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Samuel brought the disability rights movement into our home. It came with lots of questions: Will his middle and high schools continue to fully include him? What about the times when illness forces Samuel to miss weeks or months of school? As an adult, will he find a mate? Will he get a job that fulfills him? Only time will reveal the answers. But for now, I know that Samuel loves life, he loves to laugh and he loves the Red Sox. Ultimately, I am certain that my son will teach a lot of people, which is a good thing because the world has a lot to learn. by Dan Habib Dan Habib directed, produced and shot the award-winning Including Samuel. He is the filmmaker in residence at the Institute on Disability at the University of New Hampshire. In 2006, he was named national Photography Editor of the Year for papers with circulations of 100,000 or less. Until recently, he was photography editor of the Concord Monitor. His work has appeared in Time, Newsweek and the New York Times. Habib and his family live in Concord, NH. For a film trailer and more info, visit: www.includingsamuel.com

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est Texas is the size of New England, with enough room to tuck in a few small states such as Rhode Island and Delaware, and yet there are only two doors: That would be the front door and the truck door. The only time a West Texas man would ever consider walking is when he’s carrying a high-powered rifle, a beer cooler and a license to take out Bambi. Occasionally, you will find him hunting birds, but Bambi feeds more people. Besides, a real man would never mount a bird’s head in his den. I was born legally blind, so I’ve always been a walker. Luckily I enjoy it. Before I moved to the Lone Star State, I lived for 20 years in Washington DC and New York City. During my time on the East Coast, I became accustomed to passing hundreds of people on my daily strolls. But the first six months I lived in Alpine, TX, I could walk a mile and back to the city post office without passing a single pedestrian. When I wrote to my friends in the East, I reported that I had become Alpine’s best-known streetwalker. I quickly discovered that in this neck of the woods, a vehicle is treated with the respect accorded the flag. When there’s a Yield sign, people take it to mean, “I’ll yield if you’re bigger than I am,” while Stop stands for “Spin tires on pavement.” This made me wonder if pedestrians might get more respect if they had Ford, Dodge or Chevy stitched across their pants’ seat? Even if I could see well enough to drive, I’d be no match for the locals. Here, in the High Chihuahua Desert, the measure of a man is the size of his pick-up’s engine. The terrain is rugged and you need a tough vehicle. We have real cowboys herding real cows. However, it’s not unusual to see a guy get out of a pick-up truck wearing spurs, when there’s not a horse within 10 miles. Big matters.

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If your chin doesn’t touch your knee as you enter the cab, your truck is a 98-pound weakling. The truck’s bed size is important as well, because it’s directly proportional to the number of dogs you can carry in the back. I am particularly attuned to the “doggie equation” because I discovered that there is something about my white cane and hounds in the back of a pick-up that don’t mix. I’ve never had a truck with a dog pass me that did not act as though I had just insulted its mother. At first I thought all ranch dogs hated people who walked. Yet, I have never had one of these dogs bark at me when it was on the ground. I asked a local why, and he said, “When they’re in the truck, they think they’re bigger than you. But when they’re on the ground you’re bigger and you have the stick.” Good point. The link between manhood and automotive infatuation begins early in the West. One day I was told by a 16 year-old that he skipped school because his truck had broken down, and he would be “humiliated” if he had to walk eight whole blocks to school. Does anybody really wonder why we have a petroleum problem? I have decided that the only way to solve my loneliness as I stroll from to place to place is to start my own cult. I will point out to the young of the High Chihuahua that Jesus walked his entire life, as did his parents. Abraham, the father of Judaism, Christianity and Islam never bumped down the back roads in a pick-up, either. And it has been independently verified that while he was shooting the film, The Alamo, John Wayne walked all over the set. Take that you truckers! And to my fellow pedestrians, I implore you to hold your heads high. by George Covington

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onathan Lujan was already nervous when he got off the bus in Snowmass Village, CO. But as he stood on the snowy mountaintop looking way, way down, his fears multiplied.

In some ways, it didn’t make sense. Growing up in Littleton, three hours away, he had been skiing since he was five years old. As an adult he’d shown great courage by serving twice in the Marine Corps, and had been to hell and back (a k a Iraq). So what was so scary about skiing downhill, which he’d done at least 1,000 times before? “My stamina wasn’t as good as it once was,” said Lujan, who also lacks control in his legs. Although nervous, he was eager to participate in the 22nd annual National Disabled Veterans Winter Sports Clinic, his first opportunity to hit the slopes since his injury. In March 2003 Lujan’s convoy took fire in Iraq, causing his vehicle to swerve off the road and land in a ditch. He suffered a compressed spinal injury, but his stubbornness kept him from seeking treatment right away. 22

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Three weeks later, unable to endure the pain any longer, he went to a doctor. When the doctors advised him to consider surgery, he was shipped back to the United States via Kuwait and Germany. Even then, however, Lujan wanted to get back to his team in Iraq. “I asked my doctor what it would take to get me out of there. He said I had to bend over and touch my toes, so I did it. I ended up getting back with my unit in Iraq.” Two years later, Lujan decided to have the operation to alleviate the discomfort from his injury. “When I woke up from the surgery,” he recalled, “I was paralyzed from the waist down.” Now Lujan has regained feeling up to his knees. He walks with ankle-foot orthoses, braces that are worn on the ankle, to keep feet in the correct walking position. “One thing that really affected me after my injury was not being able to run because running was a good outlet for me to relieve stress,” he said. “So when I skied again, it felt kind of like I was running. It was pretty amazing.”

Afghanistan. The Department of Veterans Affairs (VA) and Disabled American Veterans (DAV) sponsor the event, which gets additional generous corporate support. Recreational therapist Sandy Trombetta founded the clinic in 1986 when he took one veteran on a ski outing. The clinic mushroomed from there. But it isn’t just about skiing, or teaching winter sports, or even partying for a week—although everyone does have a good time. “When you get out here, you’re surrounded by that brotherhood and sisterhood of other veterans who are disabled,” said Robert Reynolds, National Commander of the Disabled American Veterans. “I think that aids in the rehabilitation as well.” Lujan agreed. “I can sit and talk to my counselor or my therapist, but they don’t know what it was like, he explained. “It’s good to talk to people who have been there and done that.” Someone like Robert Reynolds.

Again. That’s a word a lot of people use when referring to the Winter Sports Clinic, a haven for veterans with disabilities who learn or relearn skiing, sled hockey, scuba diving and even shooting. This year’s event hosted 471 veterans from 44 states who are disabled and who served from World War II up to the current wars in Iraq and

Reynolds injured his spine in an Army parachute accident in 1987, and spent almost two years in and out of the hospital before being discharged in 1990. Shortly thereafter, he came to the Winter Sports Clinic. “Anyone who becomes disabled or undergoes a catastrophic change in life goes through not only physical ABILITY 23

changes, but emotional and spiritual changes as well,” Reynolds said. “How do you help them regain a productive life?”

“You can track individuals and see how their confidence builds as the week goes along. They leave here really uplifted and want to come back regularly.”

The Winter Sports Clinic is one answer for many, including Reynolds. Over the last 15 years, he has been a participant, volunteer, instructor and now is a supervisor at the Winter Sports Clinic. “I started at my lowest point, when I was at that crossroads of not knowing what I was going to do or where I was going to go,” he said. “It was actually the clinic that rehabilitated me both physically and emotionally.”

Dennis Best, a Marine Corps veteran and double-above knee amputee, is back for his 12th year of skiing. “Skiing is my big thing,” Best said. “I’m a mono-skier. The rest of the stuff is nice, but I usually try to stick to the mountain as much as I can while I’m here.”

Now Reynolds shows the veterans of all ages how they can live a quality life. He pushes them to gain the confidence they need to realize their true potential.

As a 19 year-old during the Vietnam War, Best walked into a booby trap of artillery rounds. Many of his fellow Marines died in the attack. Although he completed his rehabilitation at Philadelphia Naval Hospital, he touts the intrinsic importance of continuing rehabilitation programs such as the Winter Sports Clinic.

Actress Bo Derek, honorary chairperson of the VA’s National Rehabilitation Special Events, is an enthusiastic supporter of the full range of rehabilitation programs provided by the Winter Sports Clinic. “Physical therapy is wonderful, the machines are wonderful, the medicine is fantastic and I know they’re making progress and achieving miracles all the time,” she said. “But there’s nothing like this mountain and all the competitive sports and athletics. It’s so much more than just basic medical care.”

He brings his 12-year-old daughter, Annie, with him to the clinic where she participates in a weeklong ski program.

For many vets, the mental hurdle of simply navigating an airport and flying for the first time after an injury is a journey in and of itself. Indeed, the mental rehabilitation provided by the clinic, according to Dr. Michael Kussman, Under Secretary of Health for the Veterans Health Administration, is equally important.

In addition to helping to educate their children, most of the older vets also do their share of mentoring. “I had World War II and Korean vets to look up to. The Iraq veterans look up to us,” Best explained. “I think it’s important for us older guys to show up at the clinic for the younger ones. They’ve got a lot to go through. They’ll get there.”

“Not only do you want people to do as much as they can physically, but also psychologically. Thinking positively frees them up to do more and more,” Kussman said.

“I think her education out here for a week far exceeds what she could have learned in school,” Best said. “She gets to see other kids whose dads and moms are disabled veterans. It’s important that she knows I’m not the only one.”

Reynolds encourages this type of support, which fosters a sense of belonging at one of the most difficult times in a person’s life. With a clinic that is 400-persons strong, people feel as if they’re “just part of one big family.” “You really compete and push yourself to your limit, and you realize your abilities as opposed to just disabilities,” he adds. “We call it ‘Miracles on a Mountainside.’ The concept being, if I can do this, I can do anything.” The mountain helps the veterans do just that, Lujan said. He plans to go back to Littleton and seek out more skiing opportunities once the snow returns later in the year. In the meantime, he plans to go hunting with a new friend he met at the sports clinic. He may even take dance lessons. “This week has been awesome,” Lujan said. “I don’t want it to end. It brought a lot of healing.” by Josh Pate 2008 National Veterans Winter Sports Clinic www1.va.gov/vetevent/wsc/2008/default.cfm Disabled American Veterans www.dav.org

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U.S. Department of Veterans Affairs www.va.gov

uring Larry Barnett’s 30-plus-year career in Major League Baseball, he served as an umpire for four World Series, four All-Star games and seven American League Championship Series. If you ask him what his greatest life accomplishment has been, however, he’ll tell you it’s his association with the Disabled American Veterans (DAV) and those it serves. “I started volunteering at Veterans Administration hospitals in 1976, and I still visit five of them a month,” he said. Barnett also gives his time to the National Disabled Veterans Winter Sports Clinic, where he’s a sponsor. The Clinic promotes rehabilitation by instructing veterans with disabilities in adaptive Alpine and Nordic skiing, and introducing them to a number of other adaptive recreational activities and sports. Barnett has been involved with the clinic since its inception 22 years ago, and attended the most recent one last year in Snowmass Village, CO, where he showed participants his baseball cards and his photos from his years in the game.

Rich Tucker has served as a volunteer and a sponsor for 18 years. He first came to see the program as a guest and then took word of it back to his company, Baxter Healthcare. “We’ve been a sponsor ever since,” Tucker said. “There’s only so much an individual can do in life. You can’t be all things to all people. So you have to choose something. I chose this because it’s probably the most gratifying thing I could ever do.” “And believe me,” his volunteer buddy Barnett added, “if you can’t get excited about being around these young and old heroes, then you can’t get excited period. I had a great career in baseball—37-and-a-half years. I have a great family. My association with the Disabled American Veterans is probably the most important thing I have done in my life.” According to Tucker, the Winter Sports Clinic experience begins from the moment the vets get off the bus and turn their eyes to the snow-covered mountain, laced with instructors and loaded with challenges.

Many of the people he visits there recognize him from TV. “I went into a patient’s room. He was like 77 years old,” Barnett said of a man in an Alabama VA hospital. “He found out who I was and said, ‘Would you just please sit and talk to me? I’ve enjoyed baseball more than anything in my life. Now that I’ve met you, I’m ready to go to my maker.’ Talk about powerful stuff!” Barnett hears these kinds of stories all the time. He is the only person who has been to all 172 VA hospitals in the country, according to a spokesman for the Winter Sports Clinic. Barnett estimates he has tallied more than 3,000 visits.

“By Friday, those new participants are either in a sit-ski, standing on skis or assisted if they’re blind,” Tucker said. “They have grins on their faces as they come down the mountain that you can’t imagine.” Each year, after a week at the Winter Sports Clinic, Tucker returns to work at Baxter to questions from his work mates: Where’s the DVD? Did you bring the DVD today?

“I was at the first one down at Grand Junction, and I think we had two or three sponsors at the time,” Barnett said of the inception of the Winter Sports Clinic. “Now we have 77 sponsors along with the DAV and the Veterans Administration. They change these people’s lives, and it makes an impact on our lives. For 11 months, I visit 55 hospitals and then I’m out here for a week.”

The Disabled American Veterans produces a promotional DVD that features highlights of the Winter Sports Clinic. The disc shows participants in each of the clinic activities, from rock climbing classes and self-defense courses to snowmobiling and, of course, skiing.

A week that’s difficult for him to describe.

That DVD is a hot little item, and Tucker carries it with him everywhere he goes. by Josh Pate

“You’ve got to come out here and see this. It’s contagious, believe me,” Barnett said of his experience watching veterans learn how to overcome physical challenges, many for the first time since their injuries. 26

They step outside, look up and shake their heads at the intimidating slopes. Fortunately, previous clinic participants help to ease the fears by telling the newbies: ‘Before the week is over, you’re going to be skiing down that mountain.’

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Josh Pate works for Turner Sports. He’s covered NASCAR and collegiate athletics, and has written features on sport and disability, the Paralympic Games and veteran rehabilitation. He lives in Atlanta with his wife and son.

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or decades, few physicians acknowledged fibromyalgia as a bona fide disease. Though the term was first used 20 years ago, it is still a condition about which relatively little is known and for which there is imperfect scientific support. The history of fibromyalgia dates back to around 1900, when a British physician named Sir William Gowers used the term “fibrositis” to describe a condition whose symptoms he believed were due to inflammation within the muscle fibers. While further study did not support Gowers’s theory, in 1976 Dr. Philip Hench coined what is considered to be a more appropriate term: fibromyalgia, which means pain in the muscles. Generally speaking, pain is the body’s most common and effective way of communicating that something may be wrong, or that we are being injured by some external entity, as when you touch a hot stove. Pain is also our most frequent complaint to health care providers, yet we still have a lot to learn about it.

As a pain syndrome, fibromyalgia is one of the newest to be studied. The FDA has recently allowed Pfizer pharmaceuticals to claim in a television ad that their novel antidepressant drug, Lyrica (pregabalin), is a suitable treatment for it. Since approval of such drug labeling requires scientific study on human subjects, this lends credence to the condition as a real, diagnostic entity. Things have

come a long way for patients with fibromyalgia. There is even a Fibromyalgia for Dummies primer. Dr. Thomas H. Brannagan III, MD, associate professor of Clinical Neurology at Cornell University in Ithaca, NY, recently outlined the current understanding of fibromyalgia and its treatment in the publication Applied Neurology. Using defined diagnostic criteria, the disease is found mostly to affect women beginning somewhere between 25 and 40 years old. There may be a genetic predisposition to develop fibromyalgia—along with major mood disorders—among family members. Specific gene defects have been associated with a reduced tolerance to painful stimuli, which is a key aspect of fibromyalgia. Some of the most important data on the condition comes from functional magnetic resonance imaging (fMRI), which uses magnetic fields to “map” the brain. These diagrams show areas that “light up” when an individual is either performing a task or is subjected to an external stimulus, and indicate increased brain activity. One study involved pressure applied to the thumbnail of 16 patients with fibromyalgia at the same time that they were undergoing an fMRI of their brain. The same was done to a control group of 16 persons who did not have fibromyalgia. Distinct brain activity in the region that

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detects pain was noted in the fibromyalgia patients, but not in the control group. Depression, fatigue, irritable bowel syndrome, headaches and insomnia are also commonly associated with fibromyalgia. It is widely accepted that psychosocial factors, such as physical and emotional stress, can add to an individual’s experience of discomfort. Though some might discount the feelings of one with fibromyalgia and dismiss the pain as being “all in one’s head,” the truth is that all pain is in our heads because our brains are where we register the sensation of pain. The first step toward effective treatment of any illness is an accurate diagnosis. But pinpointing this condition can be difficult because the disease is unfamiliar or unacknowledged by many health care providers. That’s because symptoms are vague and vary greatly from one individual to the next. Moreover, the pattern of pain does not fit our highly advanced understanding of human anatomy or physiology. In truth, vague symptoms are a defining criteria of fibromyalgia. The pain is diffuse and often involves the neck, shoulders, back, hands, knees and hips, or several of these areas at once. To be diagnosed with fibromyalgia, according to the American College of Rheumatology, which studies inflammatory disorders, a patient must be experiencing pain on both sides of the body, above and below the waist. The pain must be chronic and/or ongoing for more than three months. A knowledgeable examiner should be able to identify at least 11 of 18 established “tender points” on various areas of the body. There is also the challenge of cyclical reasoning: Do the symptoms define the disease or does the disease define the symptoms? Either way, avoid diagnosing yourself and seek out a practitioner who is familiar with current medical literature on the topic and is knowledgeable about the disorder, as there are no definitive diagnostic tests. Even if one doctor has given you a positive diagnosis, get a second opinion, since fibromyalgia mimics rheumatoid arthritis, polymyalgia rheumatica, Lyme disease, systemic lupus erythematosis, inflammatory myopathy, polyneuropathy, hypothyroidism, degenerative arthritis and irritable bowel syndrome. Highly-effective treatment for fibromyalgia remains elusive. Cognitive-behavior therapy may help, as may physician-supervised courses of anti-depressant medications. Selective serotonin re-uptake inhibitors (SSRIs) have gained greatly in popularity in recent years. They seem to be more effective for most patients and have few bothersome side effects. The granddaddy of these is Prozac (fluoxetine), which has been proven effective in the treatment of fibromyalgia. The combination of a common tricyclic antidepressant, Amytriptyline, used in combination with Prozac, may even be better than each drug taken separately. 30

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Another new category of anti-depressants proven effective in this regard is the serotonin-norepinephrine re-uptake inhibitors (SNRI’s). The flagship of these is Cymbalta (duloxetine), a medication approved for treating major depression—or neuropathic pain—associated with diabetic neuropathy and generalized anxiety disorder. Cymbalta was found to improve the symptoms of fibromyalgia in a large, controlled study. While about a third of the subjects also suffered from major depression, the positive effect of the drug also occurred in a majority of subjects without major depression. Lastly, Lyrica, the only medication approved by the FDA for the treatment of fibromyalgia, has apparently performed well in large, human trials. This does not necessarily mean that it is better than other medications, only that it is better than a placebo, as it was not compared to other drugs. If one medication or a combination of them seems ineffective after a period of time, another medication or combination should be considered. This requires careful attention and supervision from a physician knowledgeable in managing the pain associated with fibromyalgia. Some therapies are best avoided because of potential negative side effects. These may include narcotic analgesics and anti-inflammatory steroids. If a potent pain reliever seems vital to a fibromyalgia patient’s treatment, Ultram (tramadol) may prove helpful. Alternative therapies are worth a try as well. These may include acupuncture or acupressure. Herbal remedies without some scientific support or a reliable track record should be suspect until proven otherwise. If you do choose to use herbs, make sure you are not taking dangerous quantities of potentially harmful substances. One treatment that has been commonly used, but remains scientifically unproven is trigger-point injections. A physician who offers these can be assumed to have as good an understanding of fibromyalgia as anyone. An aerobic exercise regimen is also recommended. The good news is that fibromyalgia does not typically progress. In fact, a significant number of patients actually get better after a couple of years. In our next installment of this series, we will discuss neuropathic pain, which refers to the chronic, atypical variety—in other words pain that is not directly correlated to broken bone, burn or other obvious stimulus. Until next time, keep well. by Thomas Chappell, MD Fellow of the American College of Surgeons FACS; Certified American Board of Neurological Surgery; Dr. Chappell specializes in minimally invasive neurosurgery, spine and cranial surgery

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Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned; Aqua therapy—healthy fun in the Safallah Center; Chairman Hassan Ali Bin Ali;

ven as I sat buckled in and prepared to take off for Qatar, my itinerary remained up in the air. I was headed for this year’s international conference sponsored by the Shafallah Center for Children with Special Needs. I figured while I was in the neighborhood, I’d see a bit more of the Middle East as well. More on that later… Her Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned created the Shafallah Center. The nonprofit, private facility offers diagnosis, evaluation, training and developmental services to youth from 3 to 21 by a highly trained team of specialists. They have expertise in rehabilitation, child and adolescent psychiatry, music therapy and so much more. The topic of the center’s Third Annual International Forum was Sport and Ability, which included discussions and demonstrations of how sport, recreation and cultural activities promote global unity. A few notable attendees were Sir Philip Craven, president of the international Paralympic Committee; Ade Adepitian, Paralymic athlete and BBC broadcaster; Jill Van den Brule, UNESCO; Vivian Fernandez de Torrijos, First Lady of Panama; Dr. Liri Berisha, wife of the Prime Minister of Bularia; Victor Pineda, filmmaker and advocate; Alice Elliott, filmmaker; Sarah Reinertsen, athlete and spokesperson for Nike, Challenged Athletes and Ossur; Marcie Roth, executive director of the National Spinal Cord Injury Association; Anthony Kennedy-Shriver, founder Best Buddies; Greg Smith, speaker and coach; Soula Antoniou, executive director of VSA arts; and Dr. Rosemary Kayess, Australian delegate. Suzanne Wright, co-founder of Autism Speaks, and her husband, Bob Wright, chairman of NBC Universal, also participated, unveiling a new partnership between their

organization and Shafallah Center. The shared goal is to foster global awareness of autism and speed the pace of research on the condition. I got a chance to trade a few words with Cherie Blair, Britain’s former first lady. As co-chair of the Shafallah forum, she was excited about her nonprofit sports program called Scope. Their new project is Time To Get Equal; its aim is to involve one million British people with disabilities in sports. It was clear that she was deeply committed and highly passionate about the new undertaking. “Shafallah” is the Arabic name for the flower of the caper plant, which is native to the Mediterranean and Qatar. Capers are pink and white flowers with immature, unopened buds. As with its namesake flower, the center attempts to cultivate the beauty of its children and encourage their growth and development. Capital city Doha is in the running for the 2016 Olympic games and boasts a sparkling jewel in its Aspire Stadium. I got an impressive tour by the general manager. The facility is the largest multipurpose indoor sports dome in the world. Designed by the famous French architect Roger Taillibert, it opened in 2005. Part of Sport City, Aspire houses an indoor athletic stadium, a 6,000-seat football arena, Olympic-sized swimming and diving pools, and seven multipurpose sports halls. Aspire hosted the 2006 Asian Games. This year, I was able to get back to the Al Jazeera Film Festival, where most of the movies dealt with the complexities of life in the Middle East. I also enjoyed a tour of the bay in a dhow (wooden boat), and went shopping at the local souqs (sprawling outdoor markets). While the international buffet was spectacular and plentiful again this year, it was the Middle Eastern dishes that

Bob and Suzanne Wright of Autism Speaks; It’s up, up, up with the building in Doha; A Shafallah student enjoy’s play therapy;

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Doha Corniche; “Democracy in the Middle East” conference with Dr. Khalid Bin Jabor Al-Thani; The Pearl; Less stress and a little rest at Shafallah

won me over: the hummus, the fresh salads, grains and warm breads.

email, and I had plans to interview them about a project they were doing called Step of Mind (See page 34).

As the conference ended, my travel plans firmed up: I would head on to Amman, Jordan en route to Tel Aviv, Israel. One of the many fascinating people that I met during the event was Hussein Abu al-Ruz, PhD. He’s secretary general of the ministry of social development in Jordan.

One thing I noticed right away on the streets of Tel Aviv were collage-age kids walking around with automatic weapons. In Israel, every young person must serve in the army, which is what they were doing. Yet it didn’t feel like a military zone.

It turned out that we were leaving Qatar airport on the same plane to Amman. When I mentioned that I had a 12-hour layover, he told me to meet him at baggage claim. There his car and driver threw my luggage in the boot a k a trunk, and we rode to his house. Once there, he got out and instructed his driver to take me around and show me some of the highlights of Jordan. After that, he was to bring me back so I could meet the secretary general’s family. Though the driver spoke no English, somehow we communicated. He took me to Roman ruins, through little towns and villages and on to a lookout point over a valley with a view of a body of water. Since I speak no Arabic, there wasn’t any point in asking him which body of water it was, rather we silently enjoyed the vista. Back at the house, the secretary general’s 8- and 12year-old sons were excited to speak with a person from the United States. They chattered happily about different American movies and music they liked. Apparently American culture is very prominent there. Later, on the way to the airport, the boys hopped in the backseat behind me and the driver. The 12 year old wanted to be an actor and was interested in the fact that I’m with a magazine that features celebrities. I think he was trying to make sure that if he ever came to America, in pursuit of the big screen, he would have a place to stay. (Mi Casa Su Casa) In Tel Aviv, Simona Bar-Haim and Jacob Witkowski met me at the airport. We had been communicating via

I did visited touristy places: the spot where it’s believed that Christ was laid to rest, the Wailing Wall and the Dead Sea, which is the lowest place on the planet. Near the sea is a source of a black, healing mud that people from all over the world come to get so they can smear it on their bodies. I couldn’t figure out people were getting it, so I just starting digging. That’s when a guy saw me and pointed to a hole in the side of a cliff. I stuck my arm inside and scraped the interior wall; it had an unusual clayish, soft and moist texture, even though the area around it was dry, dry, dry, not to mention hot. For thousands of years people presumably have been scraping at these same cave walls, and yet there was still plenty of mud. In Jerusalem, people from the Princess Basma Centre for Disabled Children gave me a tour of their facilities. In a surprisingly close relationship between Israelis and Palestinians, their joint findings are benefiting the parents and children from both sides. As I prepared to head home, I had a chance encounter at the Tel Aviv airport, with Natalie Wooller of Mercy Corps. I’d been trying to arrange to meet with someone in her Iraq office as part of my trip. Recently, Mercy Corps helped create the Iraqi Alliance of Disability Organizations (IADO). For weeks I’m emailing them and not quite connecting, and serendipitously, at the next airport in Amman, I run into Sarah Ferris, Mercy Corps’s region director for the Arab States. What are the chances? by Chet Cooper

Award winning Qatar Airways; A young Shafallah student learns with recreation technics; Getting to know you, camels connect.

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hile random, chaotic acts of violence in the Middle East often trigger fear, some scientists, healthcare advocates and businesses in that region are teaming up to actually embrace chaos and randomness in a clinical setting. Their work may aid those with cerebral palsy, brain damage, the aftereffects of stroke, as well as the elderly whose loss of balance can lead to injurious falls. The Israeli firm, Step of Mind, is one such company with plans to develop a line of products for improving motor behaviors based on the implementation of chaos theory.

ABILITY editor-in-chief Chet Cooper recently visited the organization in their Tel Aviv offices, meeting up with Dr. Simona Bar-Haim, the scientific director, and Jacob Witkowski, the Chief Executive Officer. They talked about their work and the healing products they seek to bring to market. Together, the three made a trip to Jerusalem’s Princess Basma Centre, which serves the Palestinian population, to speak with Bar-Haim’s peer researchers and see their work first hand. Chet Cooper: How did you come up with the idea of using chaos theory? Bar-Haim: It started as part of my master’s degree project, when I met a scientist from one of the cosmonaut programs in Russia. He was a new immigrant in Israel. By the beginning of the ‘90s, when the communist regime was finished, many new Jews who came here from Russia were scientists. I was studying walk physiology, when I learned that he worked with the idea of chaos theory as well. My master’s topic was the rehabilitation of movement disorders. The ex-cosmonaut scientist and I started to talk and he became my mentor. I studied physics and specifically chaos theory as it affected systems in nature, including thermodynamics, river turbulence and acclimation. Cooper: Acclimation? Bar-Haim: These are examples in nature where systems work in a chaotic way or in a non-deterministic chaos. As I continued my research, more and more institutes and scientists found that chaos theory exists in some systems in the human body, such as heart rate variability or non-linear brain functioning. The first step was to determine how to measure this. These days it’s recognized all over the world that you can measure functions of the heart and brain in a non-linear way and find characteristics, data and important clues that you cannot find with conventional analysis.

L to R: Step of Mind’s Mark Belokopytov, PhD, Jacob Witkowski, and Simona Bar-Haim, PhD

and entropy, which can show if your heart or your brain is working in a chaotic or variable way or is working in a deterministic way. This is the opposite of what is widely believed today in conventional medicine: That order is healthy and disorder is pathology. Today we know that there are disorders, which you can measure with fractal analysis, that will show that your heart is working in a variable way, and yet is still healthy. Cooper: So you’re saying that the heart should be working in a variable way? Bar-Haim: If you are healthy and young, your heart is variable. There are heart rate monitor watches that are best for measuring heart rate when you are walking or participating in various sports. These are special devices that can measure your heart beat by beat. The mean average may be 80 beats per minute, but if you are measuring bit by bit, and you are healthy and young, it may be 79, 78, 77. It will vary. Cooper: But within a parameter of order? Bar-Haim: If suddenly it fell from 80 to 60, that would be dangerous. But this small variability– Cooper: I guess I’m having a problem with the word “disorder,” in that we consider disorder being ill. Bar-Haim: Pathology. Cooper: But you’re actually saying that, to a degree, disorder is perfectly healthy? Bar-Haim: Right. This degree has two characteristics: One is very delicate changes, not drastic ones, which are dangerous. Delicate changes mean your heart has degrees of freedom to adapt to the environment. This adaptation can be to temperature, to climate, to your emotions, physical activity, etc. As you age or face illness, then this variability, this delicate variability is reduced, and if it’s reduced you can’t adapt as well.

Cooper: How do you measure these functions? Bar-Haim: You need to use non-linear or non-deterministic equations, such as fractal analysis, approximation

It’s the same story, almost, with the way our brains function. They also operate in a chaotic and variable way, meaning they have degrees of freedom. One example is ABILITY 35

the way you reach for a cup of coffee; there are 20 ways to do it. You could drink it like this or like that. Take it up with your left hand or your right. Basically, your motor functions have freedom in the way they perform tasks. If this cup suddenly became very heavy, I could choose another strategy for how I would pick it up. So chaotic is not the chaos of the Bible; it’s something you can measure by equations that are acceptable and known. If you have brain damage, you may lose this adaptability, this variability, this chaotic way of functioning, and can pick up a cup in only one way. For example, someone with hemiplegia will do it only one way. Maybe he will succeed in some way to drink his coffee, but if the shape of the cup changes, or the distance between him and the cup grows or is shortened, he will not be able adapt. Cooper: Was this information that came out of your research? Bar-Haim: Actually this information has been known for about 30 years. What’s novel is the way Step of Mind is using it. We think we can apply this knowledge to develop training and systems to help persons with movement disorders when there’s brain damage. We say, if the brain is working in a chaotic way when a person is healthy, then you should challenge him in a chaotic way in training to bring him back to this healthy chaotic brain. And it’s again very opposite to conventional therapy, which tries to “correct.” If you are doing an abnormal movement, and you know how the normal movement is done, therapists will try to make it as normal as possible. But when the brain finds its own solutions, the restored function is optimal. Cooper: Why do physical therapists go for what could be called a more robotic approach? Bar-Haim: In the therapeutic environment, a person working with disabilities, especially with motor disabilities, tries to make them look and function like us, because our eyes are used to seeing typical motions, movements and reactions that we perceive to be aesthetic. But this doesn’t mean that it’s optimal for that person. Their brain may find ways to function in the environment that will be better and efficient for them, but not aesthetically pleasing to our eyes. They may not move as they used to and that’s okay for them. If the brain finds its own ways to function in a clinic, then these skills can be transferred to the supermarket, the garden, the home and the broader community. But if a person with brain damage is just trained to do what looks normal in the clinic, we know he or she will have a more difficult time transferring these achievements into everyday life. For example, if you are retraining someone how to sit and stand from a special bench in the clinic, it doesn’t 36

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mean that they will come to a chair in a bar or a restaurant and know how to sit in that chair. Cooper: That’s why they need to bring the bench with them. Bar-Haim: (laughs) That’s one way to do it. Cooper: In the case of a person who’s had a stroke, what benefits does your approach offer? Dr. Simona Bar-Haim: There are situations where spasticity and brain damage lead to severe contraction of the hand, for instance. You can’t get effective movement out of it, meaning the muscles, ligaments and fascia are so contracted that the only solution is to operate, and we can’t help this person. But if you have a movement disorder of the upper extremity, and you have some passive range of motion, it is called a dynamic contracture. This may be a situation where you can increase the function by applying variability of training on this upper extremity. The three situations are stiff contracture, where the only solution before training is an operation; dynamic contracture, where it is only spasticity and you can help through activity and training; and a mean position between the two, where there is a dynamic contracture, but it’s already going into a stiff contracture. In the latter case, you have to apply some other kinds of treatment, such as passive movement and stretching. Cooper: So what results might you see in someone whose fingers are curled, will the fingers be flexible? Bar-Haim: It’s not only assisting with that. It’s bigger than that. You have a major study being conducted in the U.S., and now branching out to the rest of the world. It’s called constrained induced therapy, meaning that for a period of some weeks you constrain the function of your healthy hand, and thereby force the brain to use the parts that have been affected by a stroke. We’ve seen some very good results with this. Our goals with this are transfer and retention. We intend to transfer the training from the clinic to the outside world, into a real environment. With retention, you keep the results for a longer time period, even when the training has stopped. Cooper: When I was in the lab, you had equipment with variable engines for use on the arms and legs. Was that what was used in the trial you’re talking about? Bar-Haim: Yes. We are calling it proof of concept, as we are proving the theory. The first stage was my Ph.D. This was done on the cycling station that you tried in my laboratory. Meaning children with cerebral palsy sat there for 10 minutes, and their lower and upper extremities, legs and hands, were moved in a passive, unpredictable, random way. They didn’t know where it would go by

Cooper: You just mentioned brain damage. Bar-Haim: Children with cerebral palsy also have brain damage. But head trauma will be in the next trial, where we are going to Basma Centre in Jerusalem to conduct another study with children and adults. [The Princess Basma Centre provides educational and rehabilitation services to children with disabilities] We will include participants with brain trauma, hemiplegia and cerebral palsy. Cooper: How many people will the first study include? Bar-Haim: Between 15 and 20 who have movement disorders, and 10 with typical development. When you are introducing new technology, you have to first try it on typically developed individuals with no movement disorders, and then try it on the other population. The program we have in Europe, funded by the European Union, will be 80 elderly “fallers” in four countries: Switzerland, Slovakia, Italy and Israel. This will be a special system adapted to a population that either has a fear of falling or has a problem with it. We’ll complete this study in 2009. Dr. Simona Bar-Haim and the “cycling station”

direction, speed or frequency, which relaxed their motor control abilities. I disconnected their motor controller from their use in the pathology of predicted walking. The second proof of concept was done in a Middle East research cooperation study funded by the United States Agency for International Development (USAID), in cooperation with the United Cerebral Palsy Research and Educational Foundation. In this study, I instructed physiotherapists on how to use these methods. Once again, it was training that involved chaos and randomness: The child didn’t know how his training program would start or end. We used all kinds of strategies and we proved that with this kind of training, achievements last for a longer period, for more than half a year outside the clinic, in the community and in outdoor activities. Later, parents in Amman, Jordan, or in Palestinian villages reported that their children could function outside their home and schools. They went on to play football with friends outside. Cooper: They actually started playing football? Bar-Haim: Yes. Not all of them; it depended on their starting point in terms of brain damage. If it was greater, your chances were less and, of course, vice versa.

Cooper: How do you recruit “fallers”? Bar-Haim: There are inclusion and exclusion criteria when you are planning a study. The inclusion will be persons who are 65 years old and above, with no brain damage, and a history of two falls within the last six months. We’ll have other criteria, like we won’t take persons with Alzheimer’s. Cooper: How did you connect with the Palestinians? Bar-Haim: This is a very nice story. It started with the peace process with Jordan in 1997. I was asked by our State Department, because I’m quite known in Israel’s research circles, if I would go to Jordan to teach physiotherapists. I immediately said yes, because it is in keeping with my hope for the peace process in the Middle East. So I went to Amman to teach and study data analysis. This project was funded by Princess Raad Majda, cousin of King Hussein (the father). She’s a wonderful lady, and she’s the patron of all the rehabilitation centers for children and adults with movement disorders. The American State Department is also funding studies between Israel and Arab countries. It was an agreement done at Camp David between Israel’s late President Yitzhak Rabin and one of your presidents. Cooper: That far back?

Cooper: The clinical trial involved children with head trauma? Bar-Haim: Cerebral palsy.

Bar-Haim: Most of the money for these U.S.-funded studies is earmarked for agriculture and water preservation. We were the first, to my knowledge, to apply for funding in rehabilitation. So I was calling Princess Raad ABILITY 37

Majda to ask her if she could find somebody to cooperate with me in Amman, and she found me a physiotherapist. The two of us decided to develop a consortium, including Palestine, Jordan, and Israel, and then we applied for this fund and received almost $500,000. We conducted a study in the Middle East and received scientific advice from the United Cerebral Palsy Research Foundation. The best persons in the U.S. in this area are serving as our advisory board. Now I’m asked to go all over Palestine to teach. We have a good relationship.

Our final clinical studies which begin in June will take three months, and then we’ll have nine months to vet the product, package it, get all the licenses, Food and Drug Administration approval, etc. We intend to go first to the American market and then to Europe. It’s interesting, we’ve already started to line up distributors in Europe, and we are in the beginning of a negotiation with one supplier who is in charge of the Scandinavian market. Cooper: What study did you say you were going to do in June?

Cooper: When did you meet that particular group? Bar-Haim: When I taught at the Princess Basma Centre. It serves the Palestinian population, although it’s located in Israel. By definition now, East Jerusalem is Jerusalem, so what is good about this group is that they cooperate with the Israeli government and the Jerusalem municipality, but they also serve the children in Palestine. Cooper: Tell me how Step of Mind started and your vision for the future? Jacob Witkowski: I met Simona through a friend who is the manager of a hospital. He came to me and said that there are two scientists with an excellent idea, and they need somebody to help them implement it in the real world. One of the scientists was Simona. After I met with her and Mark Belokopytov, our third partner, two or three times, I was impressed and knew we needed seed money. So I partnered with them to establish a company called Step of Mind, and I contributed seed money, because I believed that this project would be good for humanity.

Bar-Haim: We’re conducting a disability study on special shoes we created. The sensors in them give us a lot of data on kinematics, which means velocity, symmetry of walking and the variability of walking. The other thing is that we’re using conventional tests which are varied and reliable, and other tests that are known and valid. Cooper: Where do you perceive this being manufactured? Witkowski: We don’t know as yet. We are open to suggestions. It depends on demand. The other thing is financial leverage. Cooper: There may be money available from USAID. In Palestine, for example, they need work.

When you retire—as I have from accounting—you change your outlook and want to do something to help the community, while expressing your personal vision. It’s the third phase of life. Today, I work harder than I used to in my professional capacity. When we started out, I wanted to make sure the idea was patent protected, so we applied for five patents in the U.S. and in Europe. We believe our company can serve all kinds of segments of the population, not only ill people or those with walking (or gait) disorders, but also healthy populations. This is our vision. We are simultaneously developing four products that will be useful to everyone. What you heard today from Simona is about one product—our most advanced one. We believe that the products used in this system will be available within one year. 38

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A special shoe with censors provides helpful data on speed, symmetry and variability in walking.

Witkowski: Very good idea. We would love to work with them. Bar-Haim: That’s exactly right. There are industrial areas where we can give work to Jordanians and Palestinians. My hope is that we will make our products in the Middle East. Cooper: Now is the time to do it. Witkowski: Yes. So that is the first segment. Our second is elderly fallers. We are working on this project with a European consortium. We believe that this product line will be available within two-and-a-half years, maybe three. We’re also working on two other segments of the population, one dealing with pain in the neck. Cooper: Tell me about it! Witkowski: (laughs) Bar-Haim: We are thinking of a computer-like gadget that a consumer could put on himself. It should be sexy and look like a gadget, because it’s for a young population that is sitting many hours in the front of a computer and starting to have neck pain because of it. Cooper: Bad posture. Bar-Haim: Yes. By the same concept, we know that the muscles are working in—I’m not saying a chaotic way, but there is one feature of muscle activation that is called stochatic resonance, meaning that they are working in a non-ordered way. It’s a bit the same as our chaos theory. It means that if you have activated muscle fibers, there are some features that are random.

When you are hunched in front of your computer, the neck pain is called the Cinderella effect, meaning that muscle fibers that are recruited first are working all the time and don’t get an opportunity to relax. We would like to develop a gadget that a person will put on himself, similar to an iPod or telephone, that will work in a random, “sub-threshold” way, meaning the person will not feel that something is being done to them, but the device will relax the muscles. We have another idea centered around sports. All our ideas are based on the same theory of inducing stress to the brain, inducing motor learning, targeting the brain for problem-solving and coordination. Witkowski: We believe that within a period of four to five years, Step of Mind is going to achieve the vision of applying chaos theory to all kinds of products for all segments of the population. We believe that the market is enormous, but we are cautious. Our first goal is to try to change the attitude in the professional world so that they understand that our system is not half-baked, and will be valuable to patients. We speak at a lot of professional conferences to clinicians all over the world. We are certain that once our products are tried by leading professionals and our work is published, then we’ll increase awareness of what we do and expand the reach of the population we can serve. Another important factor, commercially, is that our products be affordable. Today, most of the treatment done in clinics consumes a great deal of time and money, the latter because the equipment is expensive. We are not going to omit clinicians. They will likely always be needed. But we are going to save patients time spent in the clinics by having them use our equipment. Families in the Princess Basma Centre

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Cooper: It’s great to see that this is an instance where Israelis and Palestinians are working together.

worked there and focused only on Palestinian children, I would have a full-time job.

Bar-Haim: There’s a bit of chaos theory involved in the background of this as well. I think that Maha [Yasmineh, executive director of the Basma Centre] put it best: She said that clinicians in the Middle East are wise enough to use the conflict in the situation to upgrade their professional community, meaning instead of fighting and saying, I’m not cooperating with Israel because they conquered my land. They said, Okay, this is the reality. Why shouldn’t we learn, upgrade and staff from Israel and from Palestine bringing on whomever is available to help?

Cooper: Do you know if there are statistics that indicate that there might be more children with disabilities in the Palestinian population?

The Israelis definitely want to help, and there are those of us who are willing to cooperate. That has helped Basma Centre, which is in East Jerusalem become a center of instructing professional staff. On another level, they are disseminating knowledge to adult populations of professionals in the Palestinian villages, outside Jerusalem, far away from the Centre, and all of them are learning from this situation. They are smart women. Cooper: Do you have any anecdotes from the mothers who get to stay in the facilities with the child. Have you been able to get any stories of how their lives have changed, any understanding that there’s this connection with Israel at the same time? Bar-Haim: My staff and I went to Basma Centre to check the children before the study started. I know that these mothers were saying, Whatever will help my child. I don’t care what Hamas is thinking. I don’t care what others are thinking. If the know-how is in Israel, then I’m going for it. I hear that from many, many mothers. They are translating it to me from Arabic. They are asking me to come and see their children. If I

Bar-Haim: Many have married amongst themselves, like cousins, so you’ll find some genetic diseases that are more in Palestine, but not cerebral palsy. We don’t know why. It’s not a genetic disease, but there are some that are genetic, like mental retardation, because of marriage within tribes. We have the same stories here in our religious population because very religious orthodox Jews are not allowed by their rabbis to conduct amniocentesis. Cooper: Maha described how Palestinians were quick to learn. For me, the concept of chaos theory came up again as soon as she said that, because they have been going through so many variables, with things changing constantly, they don’t know what’s next… Bar-Haim: It’s true that their lives are difficult and they have to adapt to changing circumstances quickly. There are problems and conflict, but there are good things there. Cooper: Israel is actually like your machine in the lab. Witkowski: (laughs) My strong impression from Maha is that she’s taking the best of two worlds. She found a bridge between Israeli know-how, working with the Israeli official offices… and the Palestinian world. Up until a few years ago, the latter didn’t get as much care as its Israeli counterpart did. Moving forward in this realm is, in my mind, the biggest achievement.

At Jerusalem’s Princess Basma Centre for Disabled Children (l to r): Maha Yasmineh, deputy director; Ibtisam Namura, chief of physiotherapy department; and Simona Bar-Haim toast to healing.

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www.stepofmind.com

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f you asked 100 American football fans to name the most impressive ever to play the game, most would put Herschel Walker on the short list. A humble young man from Wrightsville, GA, he exploded onto the scene in 1980, leading the University of Georgia to the national championship and setting a National Collegiate Athletic Association (NCAA) freshman record for rushing. The recipient of All-American honors during each of his college years, he set 41 school records, 16 Southeastern Conference records and 11 NCAA records. In his junior year, 1982, he won the prestigious Heisman Trophy. During his professional career, Walker emerged as a dominant talent, earning Most Valuable Player honors while setting the single-season pro football rushing record (2,411 yards) with the New Jersey Generals of the short-lived United States Football League. As a member of the Dallas Cowboys in 1987, he led the NFL in all purpose yards (rushing and receiving), earning All-Pro Honors. He went on to play for the ABILITY 43

Minnesota Vikings, the Philadelphia Eagles and again for the Cowboys before retiring in 1997. In 1999, he was inducted into the Collegiate Football Hall of Fame, where he was singled out as the second greatest player, after Red Grange, in college football history. Despite decades of adulation, this consummate athlete has found it difficult to savor his success. In his new book Breaking Free: My Life with Dissociative Identity Disorder, Walker recently revealed that he has the mental condition also known as multiple personality disorder. Recently, he spoke about his challenges with Gillian Friedman, MD, a psychiatrist and one of ABILITY Magazine’s health editors. Friedman: As a public person, it takes a certain bravery to tell such a personal story. What feedback have you received so far? Walker: The majority of it has been positive. The point of the book was to help people realize that whether you have DID (Dissociative Identity Disorder) or any other type of problem, it’s okay to go out and get help. That’s the first thing in recovery, to admit you have a problem and seek help. I’m a Christian. I love my Lord Jesus, but at the same time, I don’t think God really cares about my football exploits. What I do think He cares about is what I can do for someone else. By getting help and showing others that it’s okay to take care of myself, I’m helping others. Friedman: Was there a turning point for you where you felt strongly: I’ve got to share my story? Walker: Do you remember that horrible incident on the news, where some girls filmed themselves fighting another girl, and people just stood around watching? When I saw that, I thought: If I’ve got a way to help someone and I don’t do it, I’m as guilty as those people standing around watching. It’s funny, this book was originally just writing that I did as therapy for myself. I’d written hundreds of pages as a part of my recovery process. A friend happened to read some of them and said, “Wow, why don’t you make this into a book?” I didn’t hesitate because I thought Maybe I can reach someone. I know that a lot of players’ wives struggle to figure out what’s going on with their husbands, and I thought maybe this could also help them encourage their husbands to seek therapy—not necessarily for DID, but for whatever is going on with them. There are a lot of people struggling with all sorts of problems—depression, abuse, drugs and alcohol—and they don’t know where to turn. My feeling is, Let’s not hide, people. Let’s come out and get help. Friedman: One of the things you say frequently in the book is that you have DID, but DID doesn’t define you. It’s only a part of who you are. So frequently in our culture, when we talk about people with mental conditions, 44

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we talk about them as if they are their condition. We’ll say, “He’s a schizophrenic,” but we don’t say of somebody who has high blood pressure, “He’s a hypertensive.” We don’t turn it into a label. Walker: I believe the human mind is so powerful that if you tell a kid that he’s bad all the time, he becomes bad. If somebody says, “You’re DID, you’re DID, you’re DID,” I become that and I think there’s no way out, no possibility of getting better. I now feel that I’ve been blessed with DID, because I can see the advantages it’s given me at certain points in my life. At this point, I’ve got an opportunity to do something good with it by sharing my story with others. Everyone who thinks DID is bad thinks it because that’s all they see—on television, in movies. They haven’t had the chance to see the positive aspects of it. Friedman: Let’s define dissociation and the specific type of dissociation called DID. I think your book gives some of the best layman’s descriptions of these phenomena that I’ve seen. So if you were to explain it to someone, what would you say? Walker: I would say that we wear different hats in different situations. You have a white hat for your home life. You have a red hat for work. You have a blue hat for hanging out with your friends. As an athlete, you’ve got a green hat for competition. But with DID, your hats get all mixed up, meaning that your hat for competition has now become your home hat, your home hat has become your work hat, your work hat has become some other hat and so on. So now you’re in trouble, because your family can’t relate to your competition hat, for example. Plus, you’re feeling out of control and have no idea what’s going on. What you have to do is get someone to help you to get those hats straightened out again. DID is a coping mechanism to help you overcome something. But you don’t want it to take over your life. Meaning if you’ve been abused, you don’t want to become the abuser now; you want to use your strength for good. Friedman: It sounds as if you’re saying that there are defenses that you developed unconsciously to help you get through certain situations, like your game hat: This is how I deal with what’s going on with me on the playing field or This is how I deal with what’s going on with me at school. And you didn’t even realize this was going on … Walker: Right. Friedman: Yes, and because it’s unconscious, you’re not aware of what triggers that mode. Walker: That’s true.

Photo by Richard Fowlkes

Leaping over a defender for a touchdown in a game at Georgia.

Friedman: So sometimes you’re triggered at an inappropriate place. You’re no longer on the football field, you’re at home with your family, and that warrior side of your personality takes over, which is not what your family needs right then. Walker: Right. On the other hand, you may be at home with your child, feeling loving, giving him a kiss, maybe a little emotional... But you don’t want to be soft out there on the football field. People would think you’d totally lost your mind! (laughter) Friedman: I can imagine. So with dissociation, you’re cut off in some ways from what’s happening in the here and now. Parts of your mind remain cut off from other parts. Walker: Yes. Friedman: It’s a more extreme version of compartmentalization, which people do all the time. For example, if I have a really bad day where I fight with the husband, the kids act up and I get a flat tire, I can’t take that negativity in with me when I see patients. So I have to tuck those feelings away somewhere. In dissociation, one may not just set the emotion aside, he or she may set the whole experience aside, and the conscious, thinking memory may not always have access to the details of what happened.

Walker: You remove yourself totally from it. Friedman: I’ve noticed that people tend to start dissociating when they’re very young, and they do it because there’s something going on that is so difficult that they need something protective to allow them to go about the business of growing and developing and working on themselves, even while this horrible thing is going on. Walker: Right. Friedman: In your book, you mention that for some people the trauma occurs in the home at the hands of the very family that’s supposed to be looking out for the child. Fortunately, you had a loving, supportive family, but you had a lot of things going on outside that were unusually difficult. Walker: Yes. I was extremely overweight as a kid, and I had a very bad stuttering problem. I really had no friends, and I got beaten up a lot. Friedman: It really struck me when you wrote about being so lonely for connection with other kids, that you would approach them on the playground and give them the few coins you’d been able to scrape up, just to talk to you for a few minutes. A lot of people underestimate the seriousness and longstanding effects of bullying at school. They think kids are just being kids. But there are studies that show bullying can be as traumatic as any other form of abuse. ABILITY 45

Walker: That’s the reason I tell people that sometimes God’s guardian angel is taking care of you, because otherwise you would go crazy or do something horrible to yourself. Friedman: So when it develops, dissociation is a good thing that allows children to cope. But as the saying goes, once you’ve got a hammer, everything’s a nail. It’s such an effective coping mechanism that over time you tend to apply it even though you don’t know you’re doing it. When you become an adult, it’s usually no longer the most effective coping skill for the particular situation you’re in. Walker: That’s true.

Photo by Tim Gentry

Friedman: You write about the fact that dissociative identity disorder is a special type of dissociation, when certain sides of your personality step in consistently when you’re under stress to handle things for you. All of us have different sides to us—a meek side, an angry side, a peacemaking side, a vengeful side. For people with DID, when the core personality gets in trouble, these other sides step in to protect the person. Walker: Right, your substitute comes in and takes over when you can’t handle the situation. Friedman: You described one incident that was particularly disturbing to you, where you couldn’t understand what you were doing. You became so angry at someone whom you felt was messing with you during a business deal, that you were on your way to do physical harm to this person. You wrote that there were two voices arguing inside your head—one saying to kill the guy, the other trying to talk you out of it. When you finally stopped yourself, you realized: OK, there’s something going on here that I don’t understand. This is too extreme a reaction. As is the case with most people, it took something severe to finally propel you towards therapy. Top: Accepting a trophy at a track meet Bottom: Running track for Georgia

And anyone who goes through abuse on a chronic basis needs some method of coping. Adults can get up and move somewhere else or switch jobs. But kids can’t do that. They have to keep going back into the same situation again and again, no matter how bad it is. For you, dissociation allowed you to continue to achieve without being so weighed down by all those traumatic experiences, which might have held you back if you’d had to endure their full impact. 46

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For someone who has always characterized himself as a very self-reliant person, what was it like to seek professional help? Walker: When I first went, it was very difficult. I didn’t really believe in dissociation. I thought everybody did the things that I did. Yet I had to admit to myself that the situation that you referred to was so trivial compared to the anger that I experienced. I had to come to the realization that there was this thing, and that it was affecting me. That was key. Friedman: How far were you into your treatment before the idea of dissociation came up? Walker: A couple of months. My therapist mentioned it, but didn’t say much more about it. I laughed. But one thing struck me as unusual: The therapist asked me to

look at some of my writing from the year before, compare it to my writing from a couple of years earlier, and then compare that to my most recent writing. Now I love to write, and I write a great deal. So examining my writing, I could plainly see that in many places the content and style was totally different. Friedman: Some people discover that when they dissociate they begin to notice other things, like they’ve purchased things that they don’t remember buying. Or other people will describe to them things they’ve done that they don’t remember. They become aware that there are periods of time that are missing for them. Walker: I had a lot of experiences where I didn’t remember going certain places. If it weren’t for my exwife telling me about a number of things that I wasn’t aware of, I probably would have never gotten help. From my perspective, everything that went wrong was someone else’s fault. If someone was mad at me, or I was mad at him, it was his issue. But I trusted and loved my ex, and she helped me see that I needed help. Friedman: You wouldn’t remember parts of an evening, for instance, and then in looking back, you’d draw a different conclusion about what happened? Walker: Yeah. When there were blank areas, I just thought: I can’t remember that because I’ve got a terrible memory. Friedman: When you talk about your therapy with Dr. Mungadze, you talk about some underlying rules for DID therapy. One of the first is that you are responsible for everything that you do at all times, whether you are aware of it or not. I think this gets at one of the biggest misunderstandings the public has about DID. Some people think, This is just an excuse for getting away with things. But you make it clear that therapy for DID indicates exactly the opposite. Walker: Right. That’s what I call integration. I’m the captain of the ship. So all the responsibility, all my men—whatever hat they happen to wear at any given time—I’m responsible for their behavior. I appreciate all of them; they’ve done a lot for me. I feel like dissociation helped me be a good football player, helped me go to the limit. If I welcomed that, then I have to welcome the bad as well. That’s the reason I say I’m responsible for it all. Friedman: That makes sense, given that all the sides of you share the same person, share the same body, what affects one affects all. But how do you deal with the responsibility of knowing that you’re accountable for what you do, even when you lose time? Walker: By knowing that I’m human and not a god. I make mistakes, and I can ask for forgiveness. The good thing is that once you integrate, the loss of time is not as

great, and sooner or later you stop losing time. Friedman: Tell me about the integration process. Walker: It’s about bringing the different personalities together. Before integration, you have fragments of your personality that are loose and disconnected. So now you take those fragments and put them together and you become whole and stronger. Instead of being the $6 million dollar man, you become the $60 million dollar man. Friedman: It would seem that integration gives you more flexibility, too. Dissociation can be an important coping mechanism early on, but as an adult, DID limits your flexibility. It can be like handling things on autopilot rather than having a range of choices in how you respond to a situation. Walker: That’s right. Friedman: You’ve done individual therapy for a long time with Dr. Mungadze, and you’ve also gone through intensive treatment in such well-respected programs as the one at Del Amo Hospital in Torrance, CA. What are some of the most helpful things you’ve learned in therapy that allow you to work with your DID? Walker: Group therapy was the most helpful. Seeing that I share the same experiences with other people helps me feel that I’m not alone, and that this condition is for real. It’s something that many of us are dealing with. Friedman: Interesting that you point to that sense of shared experience because one of the themes of your book is that you’ve consistently felt like an outsider. Walker: Most people would say that I’m a loner; I do a lot of things by myself. Friedman: Before you started therapy, did you have a sense of how frequently you would switch from one part of your personality to another? Did it happen several times a day? Walker: Back then, I probably did it a lot. Friedman: Do you think it’s lessened? Walker: Quite a bit. For example, I used to be afraid to speak in front of a group of people. Though I did it, I was detached; whereas now, that speaker is part of me. I enjoy where I’m at now. Recently someone asked me if I was worried how the football world would view me now that everyone knows “big, strong Herschel Walker” has DID. I said, “It doesn’t matter, because in many ways I’m better and stronger today than I was back then.” ABILITY 47

Friedman: Let me switch gears and ask about “big, strong Herschel Walker” the football player. In the book, you give a detailed history of your football career, and what you were thinking as you went along. You talk about how you got into athletics as a kid, your victory season at the Sugar Bowl, your trade from Dallas to Minnesota and your frustration that you did not quite get to do what you wanted once you were there. I’m going to start with the big one—the move from Dallas to Minnesota. If someone in Minnesota says “the trade,” everyone immediately knows that refers to the Vikings’ decision to exchange five players and six draft picks to get you. But then, once you got there, it seemed you weren’t going to be allowed to make good on the deal: You just didn’t get the time on the field that you needed. That must have been an extremely frustrating situation for you. Walker: I could have gone against “the trade,” but I knew Jerry Jones, the owner of the Cowboys, was a very good businessperson. I think I was thrown into a situation where I never could have known the outcome. But the people of Minnesota loved me no matter what. They accepted me. When I was leaving the game, I made a statement that I would go back and play in Minnesota if only to give the people an opportunity to see what I could really do, because I think they deserved that. The people make NFL football. So I felt I owed them something. It had nothing to do with the team itself, because the team got what they wanted from me. Whatever the coaches asked me to do, I did. But the fans in Minnesota deserved more. Friedman: You write about not ever really being able to understand why, after they traded so much for you, they didn’t use you more. Walker: Before I even got there, management and the coaches were at war. So now management makes another huge, huge trade that the coaches are not aware of, and I got caught in the middle. The coaches didn’t like Herschel and another “34”— Walter Payton of the Chicago Bears

it, so they weren’t gonna let me play. Friedman: So you were a pawn in a war where people did a lot of cut-off-your-nose-to-spite-your-face kind of maneuvers. Walker: Yes, and that’s not the kind of person I am. I was raised to stick to a bargain. I was a player. I was paid very, very well to do as I was told. I would love to have done even more. Friedman: When you look back on your career, every step of the way you have a lot to be proud of, but what are some of the highlights? Walker: Football-wise, the best part was winning the national championship when I was at the University of Georgia that first year. The team stayed together, fought together, believed in each other. It taught me that if you’re unified, you can accomplish great things. Years later, I grew a great deal playing under Coach Tom Landry because he built men, not just football players. Friedman: Do you still maintain relationships with some of the people that you got to know throughout your career? Walker: I do. During my freshman year of college, Frank Ros was a senior and took me on as his “little brother.” I write about him in the book. He and I talk almost every week. A lot of the time, I’m with his family or he’s with mine. Friedman: You wrote that part of the time you were with the New Jersey Generals, Donald Trump owned the team. Walker: Yes, he owned it the second year that I was there. Friedman: You said that you learned a lot from him. What kinds of things? Walker: His work ethic, his confidence, getting things done, believing in yourself. I tell people all the time: “You have to believe in yourself, not to the point that you’re arrogant or cocky, but you’ve got to believe when no one else does.” Friedman: Sometimes it’s important, particularly early on in your professional career, to have a mentor who teaches you not to sell yourself short. Walker: Right. I had some very honest conversations with Mr. Trump, and he gave me good advice. I’m really glad he became our owner. Friedman: It seems that you had an effective routine for yourself during your football years. Did some of your DID issues begin to surface after you retired?

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Walker: Yes, I was out of football for about four or five years, when the anger, the loss of time, and other concerns began to come up. Looking back, I guess that the regimented football schedule kept me preoccupied, so I didn’t notice those other things as much while I was playing. Friedman: Retirement can be a big identity crisis for anybody. All of us deal with the issues of who we are and what we’re going to do with ourselves when we leave something that’s been a big part of our lives. When you have multiple shades of your personality that have been in equilibrium because there’s been a common goal, so to speak, they can go out of whack when there’s no longer a common objective. Walker: I was fortunate that I had already started a couple of businesses and they were doing well. My biggest goal in life was not to play football, it was to give a man a job. I thought if you put a man to work, you give him self-worth, and that’s what I was more proud of than anything. The purpose of one of the first companies that I created was not really to make money, but to employ people. It paid for itself, and I didn’t have to put any money in it.

can prepare chicken. Our plants are in Arkansas, but we have brokers all over the U.S. Friedman: Did you start with food services and then branch out to other areas, such as medical services? Walker: No, I started other companies that I had someone else run, and then I started the food service to give my family members and other people from my hometown better jobs, so they could stay closer to the community and take care of their families. Helping others is not just giving people things, it’s giving them opportunities. Friedman: What about Herschel’s Famous 34? Is that another company? Walker: (laughs) That’s a brand name on some of the products that we do. Friedman: Some of the products you make through Renaissance Man Foods? Walker: Yes, we have Mama’s Cookin’, Herschel’s Famous 34, Mama’s Bakin’, among other brand names.

Friedman: That was Renaissance Man Food Services? Tell me more about that.

Friedman: How much of your time is devoted to your enterprises? It sounds like you enjoy keeping busy.

Walker: I had Renaissance Man Food Services, Renaissance Man Hospitality and Renaissance Man Medical. It was a name that someone once called me because I have so many different interests. The business has grown. I am probably the largest, minority-owned poultry supplier in the U.S. We’ve serviced Sysco, one of the largest distributors of foods for commercial use. We sell to all the U.S. and Canada, and we’ve sold in Europe and to the military.

Walker: (laughs) I do. Now the company’s grown to a point that I’ve had to hire someone to run it for me. I still do appearances and speak a great deal. Currently, I’m talking to Mark Burnett, the guru behind reality TV. I have an idea for a show that he and I are discussing, so you may see that in the future. Friedman: You really are a Renaissance Man! Walker: (laughs)

Friedman: So it’s a company that processes poultry? Walker: Yes, we precook, we fry—any way that you

Friedman: I really enjoyed what you wrote about defying the “dumb jock” stereotype, because you’ve always

Herschel with family at older brother Willis’s wedding in 1985

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been “booky”—obsessed with reading and learning. I also loved the story of how, when you first got to college, you walked around looking at the architecture. When you saw Demosthenian Hall, you knew Demosthenes was a famous Athenian orator who led a rebellion against the Macedonians and was crushed by one

of your childhood heroes, Alexander the Great. Walker: Aside from Greek mythology, I used to read about Roman athletes and how they worked out in Rome. From those stories I created my own workout. It’s funny, though: People still tend to believe that jocks are dumb. I have gone to meetings at my own company, and people would talk to me about football, and then turn to an employee of mine to talk about business, assuming that I’m just a figurehead. I created the business. I can talk about it as well as anybody. I’m not that unusual; many athletes are well-read. Friedman: Your son is around nine or so now? Walker: He’ll be nine in September. I spend a lot of time with him. A couple of years ago, I invented a toy for him. Late at night, I think of different things I might do or create. My son stays with my ex-wife when I’m out on the road. I’m still traveling a great deal, because we have offices all over the country. I get invitations to speak all over the country as well, so I have an opportunity to meet a lot of people. Friedman: You’re getting a lot of publicity around the book. Have you spoken with your son about it? Walker: He knows that his father is a public figure, and I tell him: “Your dad is strong, he can do amazing things, but sometimes he’s weak and needs to ask for help. A strong man is someone who admits when he’s wrong, and then stands up and does what’s right. So if you’re getting knocked down, get back up and keep going. Don’t let anyone stop you.” That’s why I know this book is going to help him; he will be able to understand that his father had a problem and faced it head-on. Friedman: That is one aspect that makes your story so important: You’ve never been a defeatist. Psychologists call that trait self-efficacy. It’s a feeling that you have the capability to come up with a solution. That trait is perhaps the single most-important predictor of who will eventually find a good outcome.

Herschel running for the University of Georgia as a freshman, 1980

Walker: Yes. Friedman: It seems that’s been a constant for you throughout your life, that is, you’ve always responded to whatever is going on around you with the question: “What can I do about this?” Walker: When I was being bullied and picked on and laughed at and all that, I got to a point where

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I said, “Enough is enough. There will be no more.” I’ve certainly known fear. I mentioned that my dissociation may have started when I was a very young child, and I was unusually afraid of the dark. But I know that we all have strength; we’re all blessed by our Lord Jesus. I also know that because of Satan having my playbook, he’s always going to try to fool me. A lot of major decisions in life I made by the flip of a coin, because I knew my heart was pure and my mind was pure, so no matter what decision I made, it was going to turn out all right. For someone out there who is struggling, I say, “We’re all blessed, so let’s not run away from our illness. Let’s take it on with a positive outlook. Let’s flip the switch on it and see what happens.” Friedman: You had a lot of support from your family, which is different from the background of many people who have dissociative problems. Support from your family makes it a lot easier to grow up with the feeling that you can handle whatever life throws your way. Do you think that was part of your family’s ethic? Walker: Yes. I have seven siblings, and my family’s my foundation. Some people don’t have the opportunity to build a foundation. A lot of people are not raised with two parents, for instance. I always say everybody falls back on their foundation, and for me that foundation was built at home. So when I went outside of my home, at first I felt like people had shattered that foundation. It took me a while to get it solid again. But once I did, people outside my family couldn’t touch me anymore. Friedman: You write about a lot of prejudice you faced in school because you stuttered so severely and you had the weight problem. People made assumptions that you were not going to amount to much; there was this pervasive “poor downtrodden Herschel” perception. If you’d had to experience that at school, and then hadn’t had a supportive family to go back to, it could have been a very different situation. Walker: It would have been totally different for me, and that’s the reason why I’m trying to encourage people who might be in that situation to realize that they are worthy, and that they should never let anyone convince them differently. Friedman: Coming back more to the present, the process of figuring out what was going on with your dissociation, starting your food service business, and retiring from your football career was stressful to your marriage. There’s a point in your book where you describe that even though you and your ex-wife really tried to work together, you admit, “There were parts of me that were still so broken, I couldn’t do what was really needed to help her heal the wounds I’d inflicted on her.” What do you think it was that she needed that you

couldn’t offer at that point? Walker: She felt that she needed me to be totally there. She needed me to share what was happening with me, because that’s the way it had been since we’d met, and I couldn’t do it. Meanwhile, I felt that I had lost my friend, because I couldn’t relate to where she was coming from. Friedman: About some of those differences of opinion, you wrote: “I was doing my businesses and she wanted to relax, and I couldn’t understand that. She would go off to play tennis with her friends, and I felt she was abandoning me, but she was just living her life.” Walker: Yeah, she was doing what she always was doing. It was nothing different. But I had more time on my hands, and for me it was like, It’s Herschel, Herschel, Herschel. And I felt like, Why aren’t you here with me? Friedman: These are typical couple issues when people make a big change. I’m wondering if maybe the silver lining of having something going on—like DID—which moves you into therapy, also gives you an opportunity to reflect and understand other things about your life. Walker: It does. It gives you an opportunity to stop for a moment and reflect on the truth. If I had not gotten help, I would have always thought it wasn’t my fault, it’s the other guy’s fault. He’s the bad guy. He just wasted my time. He didn’t deliver, so he deserved to be hurt. Friedman: It’s kind of like somebody who develops a rigorous physical regimen because he finds out he’s had a minor heart attack. Then he changes his lifestyle and becomes healthier than before he got sick. Helping others improve their health seems important to you. In the 1990s, you were involved with Health South’s “Go for It” Roadshow. Are you still doing that? Walker: I did that for about seven years, but it’s not around anymore. We went to different cities and talked to kids about staying off drugs, getting an education and so on. We spoke to more than five million kids. Friedman: What other activities in your life are really important to you right now? Walker: I give a lot of scholarships to kids around the country. Fifteen percent of all my company profits go to charity. As a person who was blessed, I think it’s my responsibility to share the blessing with others. www.herschelsfamous34.com www.nami.org

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t the impressionable age of eight, Marvin Laster became a member of the Boys & Girls Club in his hometown, Albany, GA. The popular neighborhood hangout gave him a safe haven from the lures of the streets. With some 4,300 Clubs worldwide, Boys & Girls Clubs of America (BGCA) makes sure that children who might otherwise be at home after school with no supervision, have a place to go and something productive to do. Academy-Award-winning actor Denzel Washington has often given credit to the club in his old Mount Vernon, NY, neighborhood for keeping him on the straight and narrow during his youth. “Much of the success that I have achieved I attribute to lessons learned within the club,” says Laster, who’s also enjoyed a life-long relationship with Atlanta-based BGCA. Though he learned a great deal from the older staff back in the day, he received perhaps his most valuable ‘take-away’ from a friend named Shawn Luke, who had a disability. As the two boys played pool and other games at the club, their differences disappeared. “He taught me acceptance,” Laster says. Now, as director of diversity for BGCA, he helps to make sure that message is imparted not only throughout the organization, but also beyond. To institute its diversity and inclusion program, BGCA used a “top down/bottom up” approach. From the bottom up, it created a pilot program by identifying five clubs that had marked success serving youths with disabilities. These clubs were teamed with local Easter Seals affiliates, school systems, agencies and community organizations, so that BGCA staff could

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get additional training or have a place to refer kids in need. The program also tracked progress and captured “best practices.” The pilot sites provided the organization with several unique programming activities for youth with disabilities as well. From the top down, BGCA took a step back and reviewed its mission statement and policies to help determine how the national office could be more supportive of initiatives to include young people with disabilities. To that end, Laster encouraged local clubs to sign BGCA’s Diversity Pledge. He wrote articles on the subject and also encouraged all Clubs to celebrate National Disability Awareness Month (October). Laster then sought out alliances with Easter Seals and several like-minded foundations such as Mitsubishi Electric America Foundation (MEAF), based in Arlington, VA, to expand the resources and reach of BGCA’s national-level initiatives. MEAF provides national grants to projects and organizations that are focused on the full inclusion of young people with disabilities. It was serendipitous that they were also looking to team up with a “mainstream” organization. “The partnership with BGCA represented the perfect intersection of mission, need and opportunity,” says Rayna Aylward, executive director of MEAF. “The right people at the right time are facing in the right direction.” Previously, BGCA had formally partnered with Kids Included Together (KIT), which had an existing relationship with MEAF. KIT is a San Diego, CA, nonprofit that provides training for after-school organizations

Shawn and Marvin (light blue vest), who played together as children, still find time to get in their usual game of pool when Marvin visits his hometown Boys & Girls Club in Albany, GA.

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Clockwise from left: Many lifelong friendships begin “at the club”; The Boys & Girls Club of Carlsbad, CA, was recently honored for furthering the goals of the Americans with Disabilities Act. Marvin Laster receives the first Inclusion Champion Award from Rayna Aylward of Mitsubishi Electric America Foundation. Julius Lott, BGCA vice president of diversity, attended the San Diego event to help cheer Laster on.

committed to servicing children with disabilities. Working together, BGCA and KIT developed Embracing Inclusion: It’s About All of Us, a programming manual that offers tips, activities and events that clubs can easily implement.

Similar to Laster’s experience with his childhood friend Shawn, PALS pairs a child who has a disability with a typically-developing kid at the club to cultivate a rewarding learning experience and a climate of understanding and acceptance.

“This initiative has led to significant outcomes in the advancement of the Boys & Girls Club mission,” says Julius Lott, BGCA’s vice president of diversity.

Making it all work takes money. Mitsubishi Electric America Foundation has invested $2 million, while its nonprofit partners have leveraged an additional $4 million towards promoting inclusion. MEAF is now helping to involve other grant makers through the Disability Funders Network. The presence and reach of such support has allowed KIT and other organizations to broaden their scope.

Though the formal agreements have expired, BGCA, MEAF and KIT continue to work together and remain committed to the vision. Their partnership with other organizations and agencies has been instrumental in developing Paths to Inclusion, a resource guide for fully including youths of all abilities into community life. This sense of mission is shared by the Boys & Girls Clubs of Carlsbad, CA, which recently was presented with an award for furthering the goals of the Americans with Disabilities Act. The club’s Physical and Learning Support (PALS) program earned them a $2,000 cash award and acknowledgment for their contributions from Prudential Financial as well as from the National Organization on Disability.

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“It gives KIT so much validity to be working with an organization that truly affects so many lives across the country,” says Jan Giacinti the CEO of KIT. “This relationship has put us in a different place.” These accomplishments would not have been possible without key individual leadership. To recognize the work of those who have made a measurable and sustainable impact in promoting the inclusion of youth with disabilities, MEAF created the Inclusion Champion Award. Earlier this year in San Diego, CA,

The ABILITY House program, working with Habitat for Humanity, ABILITY Awareness and ABILITY Magazine, reaches out to volunteers with disabilities to help build accessible homes for low-income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries. Please contact us for more information. info@abilityawareness.org www.abilityawareness.org

Laster was named its first recipient. Years ago, when he was just starting out, Laster stayed in his hometown after high school to work as a juvenile justice coordinator. He was responsible for implementing Boys & Girls Clubs of Albany’s delinquency prevention and intervention programs. His talents were recognized early on by East Albany unit director Michael “Skip” Nelson. “The program Marvin put together [for delinquency prevention] is the one that we still use today,” Nelson says. Laster eventually left his hometown Boys & Girls Club to pursue other opportunities at the organization’s national headquarters, as well as within the Georgia Department of Human Resources. After completing his undergraduate degree in political science at Albany State University, he continued to work on campus to create youth development and violence prevention programs. But all roads lead home, as they say, and eventually he ended up at BGCA’s national headquarters where, in 2004, he was hired as the assistant director of Health and Life Skills.

Laster reflects. “But in a way, it is. We are in a race to speed up that day when all people, regardless of their abilities, are fully included in America.” by Lauren A. Hoffman Lauren A. Hoffman is a writer and editor for BGCA. Boys & Girls Clubs of America: www.bgca.org Mitsubishi Electric America Foundation: www.meaf.org Kids Included Together: www.kitonline.org Paths to Inclusion and other resources can be downloaded from www.includingallkids.org

“I’m reluctant to call this inclusion movement a race,” ABILITY 55

he telecommunications industry has come a long way. Prior to 1990, when the Americans with Disabilities Act was passed, people with hearing and speech disabilities faced challenges trying to communicate via telephone. But the ADA paved the way for the Telecommunications Relay Service (TRS), which got everybody talking. In recent years Sprint Nextel has emerged as an industry leader in expanding TRS to include a vast range of products and services. ABILITY editor-in-chief Chet Cooper spoke recently with Mike Ligas, director of Sprint Relay, and Tammy Edwards, director of Inclusion and Diversity, about the company’s continuing innovations as well as its commitment to diversity and accessibility in the workplace. Chet Cooper: First off Tammy, what initiatives do you have internally for hiring people with disabilities, accessibility issues within the organization, community outreach... Tammy Edwards: Let me give you some background. We’ve had our formal diversity and inclusion organization in place since 2003. With our employee resource groups, our community relations department and our external diversity initiatives, we have a united front on how we approach the community in regards to sponsorships, as well as to our volunteer programs. In those areas we marshal large employee populations to work on the needs expressed in certain communities where our employees live and work. So our community outreach takes the form of utilizing what I call the three T’s: the talents of our employees, the treasures from the Sprint foundation and our community relations budgets, as well as the time that our employees spend volunteering to help a variety of organizations around the country.

Cooper: Let’s talk a bit about some of the relay services you provide. Ligas: Since shortly after the Americans with Disabilities Act of 1990, we have been providing services for people who are deaf and hard of hearing and/or speech disabled. We have contracts with 32 state governments, the federal government as well as the U.S. territory of Puerto Rico and New Zealand. We’ve broadened our service offerings over the years, and now provide video relay and Internet relay. We’re the largest provider of a service called CapTel, or Captioned Telephone, which is designed for people who are hard of hearing. Cooper: How does CapTel work? There are two versions of our Captioned Telephone service. We launched the original in 2002 and have been providing that service to a growing number of people who are hard of hearing. Sometimes we get email about it. A person might write and tell us that they hadn’t been able to talk to their grandchildren in years, and now they use the telephone like they used to. I love that. The newest Captioned Telephone service, Web CapTel, was launched this year. With this version, captions appear on your computer screen. You have to be a little more computer-savvy to use it, as opposed to the original version. But this one allows you to make the font size bigger and/or a different color. It provides a much more adaptable transcription of the text. You can essentially enhance it so that it is readable for you. You can use Web CapTel anywhere you can access a computer. Cooper: Can it be used for international calls? Ligas: It’s not eligible for international calls. Cooper: Do you have it in other languages?

Cooper: Do you work with any specific groups? Edwards: When I was involved in our relay products like 100 years ago, I know we had programs with Gallaudet University. We not only provided them funding from the foundation, but we also volunteered there. That was at the national level. Locally, here in Kansas where I’m based, we worked with the Kansas School for the Deaf, and two years ago we partnered with the Kaboom! Organization to build a playground at the school for the deaf. Mike, want to jump in with some recent initiatives? Mike Ligas: We participate with the National Technical Institute for the Deaf in Rochester, NY, and also with California State University at Northridge, where there’s a large deaf program. We’re involved with the National Association of the Deaf, Telecommunications for the Deaf, Association of Late-Deafened Adults and AARP. We’re involved with so many of these organizations, it would probably take an hour to list them all.

Ligas: It’s also in Spanish. You know, there was another point I wanted to make about CapTel: There’s an operator involved, just as with any other relay service, The difference is that the operator is completely invisible to the two parties on the call, meaning that you cannot interact with the operator the way you can if you’re doing, say, Internet relay or video relay. The operator for CapTel uses specialized speech-to-textrecognition software. If you and I were having this call and I was using Captioned Telephone, and you were a normal hearing person on the other end, you would hear everything I said, and your end of the call would be perfectly typical. Everything you said, I would hear, but it would also be cycled through the call center that our vendor provides us, and an agent would also hear what you said and revoice your words into a computer specially trained to understand that operator’s voice. Cooper: Oh, I get it now. ABILITY 57

Ligas: Speech-to-text-recognition technology works for what we call speaker-dependent speech to text. So the agent trains the computer to recognize his or her voice, which it does with a high degree of accuracy. Of course, agents have their own log on, and go through extensive training to match their voice profile with their computer. One of the things that’s a bit different than a normal call is that you’re getting two inputs. In the scenario that I talked about earlier, where you and I are having a conversation and I’m the hard-of-hearing person, I hear your voice, and then I see your text come across my screen about three seconds later. I don’t know if you’ve ever watched a taped program, but say it’s a live event and you turn both the volume and the captioning on your TV at the same time, you will notice that the speech comes across immediately, but the text comes across after about a two- or three-second delay. That delay is the processing time that the agent takes to revoice your words, as well as for the computer to turn them into text and spit them out on the screen. It takes a bit of getting used to, but it’s not hard. You kind of slow down a bit. You hear the words, you look at the screen, and you can verify that what you heard was correct, because you can now read. Say, for example, I missed 50 percent of what I heard, I would be able to fill in the blanks with the text that comes across my screen. Cooper: Is that text later email-able? Ligas: On the Web CapTel system, yes. You can save the conversation, print it, and, I believe, email it. Cooper: Is the service free? Ligas: Yes. There are surcharges of a couple of pennies on everyone’s phone bill in the U.S., which covers the cost of service for people who have hearing difficulties. The only charge to the end user is the price of the call. Cooper: So you’ll get the same cell phone charge, or land line rate, if that’s what you’re using. Ligas: That’s correct. You can use a cell phone with Web CapTel as one of the devices on each end of the call, but you’re not going to see the captions on a wireless device. You can see the captions only on your computer screen. Cooper: So at this point, this is all web-based. It’s not like text messaging? Ligas: Correct. It’s definitely not text messaging. Quite frankly, there are some people who are not comfortable with computers, and that’s where the traditional CapTel service is a great support mechanism for their communication needs. Almost every state in the country has a contract for CapTel. 58

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Cooper: Tell me about your video relay system? Ligas: It’s a wonderful product for people who use sign language, and has been a tremendous equalizer and communication opportunity. Sprint was the innovator, along with one of our subcontractors, CSD. In 2002 we launched the nationwide service for video relay, and the market has subsequently exploded. Cooper: Do you have any other services or products? Ligas: There are a couple of different things. First of all, we have a wonderful line-up of wireless devices for people who are hard of hearing. We have been the innovator of wireless plans for the deaf that are data only, and don’t include any voice minutes. The second service I’d like to talk about is Relay Conference Captioning. We may be the only provider in the whole country that offers it. We sell this service to a couple of state governments, the federal government, and to a couple of very progressive, disability-friendly companies such as Hewlett Packard, ESPN and IBM. It’s a conferencing capability so that people who have hearing difficulties can participate on conference calls where it is primarily a one-direction type of service. For example, our CEO does a quarterly webcast, where all 55,000 to 60,000 employees dial into a conference call—or webcast—and view the call. On my team, we subscribe to the Relay Conference Captioning service for the people who are primarily deaf or hard of hearing. They’re able to see the entire transcript of the call come on their computer screen in real time. So if they have difficulty getting an interpreter or using one of the other services, they can still participate. It’s primarily receive mode. They do have the ability to ask a question or interact with the speaker in a limited form, but it’s mainly information going out from a central source. Cooper: On the CapTel that we talked about, you have to log in to do the one on one? You both are logged in? Ligas: On the Web CapTel, only one person has to log in—the initiator of the call. It’s a really cool service and easy to sign up for. It takes about five minutes or less. At the end, you get an access code. Edwards: With our all-employee webcasts, we make closed captioning available for everyone. So when an employee signs up to “attend” one, such as the webcast from our CEO, there’s an option for that employee— whether he or she is deaf, hard of hearing, or speaks English as a second language—to get the feature. Cooper: It seems that other companies should follow your lead. Edwards: Well, we work very hard to create an inclusive culture for all of our employees. We want them to feel

valued and be able to do their best work every day. Cooper: Do you do any specific outreach to hire people with disabilities? Edwards: Yes, through selected websites. Ligas: Tammy, let me jump in here. I have about 50 people on my team. About 80 percent of them are deaf and hard of hearing, and whenever we need to hire a new person, we typically recruit through a professional network, friends of friends, the National Technical Institute for the Deaf (NTID) or Gallaudet University. Probably 30 percent of my people have graduated from NTID, another 30 or so percent from Gallaudet, and about 10 percent from California State University at Northridge. So we do focus on recruiting people who really use our products every day and have a keen insight into the needs of the community. We also have a deaf-blind service with a couple of operators who are blind in our TRS call centers; we have people specially trained to understand those with speaking disabilities who handle our speech-to-speech services. Edwards: In addition to the people who are deaf and hard of hearing, we also want to make sure that people with other disabilities, such as the mobility impaired, for instance, also feel Sprint is a great place to work. So with our employment materials, our employment website, as well as our on campus and conference recruiting, we always make sure that we’re seen as inclusive. Cooper: Good. Now do the phone systems that you sell all have accessibility features? Ligas: I’m not an expert on every device that we sell, but I believe that we’re certainly within the FCC mandates for our T ratings and M ratings. I think 50 percent of our phones need to be T rated or M rated. [The higher the T and M ratings the less likely the hearing aid user will experience interference while using a cell phone.] We have a very extensive line-up. It goes from flip phones to full data PDAs that meet those standards. Cooper: Any other subjects that you’d like to talk about? Ligas: Yes. The new FCC mandate. It essentially requires providers of Internet and video relay services to offer a full 911 or an E-911 capability. In the past, pinpointing an Internet user’s exact location for emergency reasons was difficult. In response to the mandate, we’ve modified our system. It requires users to provide location information when they use a relay service for the purposes of dialing 911, if ever needed. So we now can provide equivalent 911 access to the best of our technical capability. However, you’re probably not going to

Using Web CapTel, a hard-of-hearing person will see the callers speech-to-text come across his screen about three seconds later

hear any stories about ‘the dog logged on and saved the woman’s life’… Cooper: Because it’ll take the dog a lot longer? Ligas: (laughter) And he’ll need to hit the keys just right... The other thing to note is that there is a lot of discussion amongst leaders in the deaf and hard of hearing community, with support from providers including Sprint, to have a 10-digit numbering system for Internet calls and video calls that is similar to the 10-digit phone system that hearing people have. Because in the past, you might need to know someone’s IP address to be able to connect to them through either Internet relay or video relay. So we’re all working toward a solution that makes it easier for people to connect, whether you’re deaf-to-deaf or deaf-to-hearing, by using a 10-digit numbering system instead of an IP address. Cooper: Tammy, would you talk a bit more about dealing with disabilities internally? Edwards: We have an executive inclusion council chaired by our CEO, Dan Hesse. It’s made up of senior leaders from each of our business units. It’s a very inclusive group in just about every way. The obvious being gender and ethnic diversity; we also have an employee who has a disability. In this case it happens to be someone who is mobility impaired and who sits on the executive inclusion council to provide insight for members of our Sprint population who are disabled. Mike has been working with Peter to give us some insight on how we can perfect captioning for our employees. Peter works with our real estate organization on ways that we can improve accessibility within our stores and offices. So he has been, as well as the other members of our inclusion council, a great resource for updating our senior leaders on projects and initiatives that need attention. www.SprintRelay.com www.SprintRelayStore.com ABILITY 59

aking up at 5AM to run five miles is tough, but getting up at the crack of dawn to train for a 200-mile charity bike tour is: Bizarre? Ambitious? Exhausting? Try all of the above.

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“It is easier for me to ride 100 miles than it is for Max to walk 100 inches. Until we live in a society where he and every child with a disability gets the treatment they need and are not bullied on playgrounds... I will ride.”

But I was motivated by the knowledge that I was helping to transform the lives of children and adults with disabilities across America. The two-day, 200-mile bike ride took place in four cities in three states: San Diego, CA; Raleigh and Charlotte, NC; and Tampa Bay, FL. United Cerebral Palsy (UCP), which serves 176,000 children and adults with all types of disabilities, launched this first-ever Ride Without Limits. As with any charity event, the organization faced challenges, including breaking into new markets and seeking to recruit riders with limited affinity for the cause. While some cyclists, sponsors and volunteers initially knew little about UCP, after the ride they seemed to form a lasting connection. With the help of traditional media advertising and word of mouth, cyclists and their teams, along with family and friends, joined together to raise nearly $500,000. Seventy percent of the money collected will directly support services and programs provided by UCP affiliates in the markets where the rides were held.

Clay Gandy, 30, wanted to be an inspiration to other people with disabilities: “Last year, I learned to ride a bike. This year, I’m striving to push my limits, go the distance and make a difference for someone else with CP. Riding has given me the satisfaction of accomplishing that. Until last year, I thought it was impossible. Somewhere out there is another child, young person or adult like me who thinks the possible is impossible. I will try to make a difference for that special person.” New to riding, Patricia Blackman became an avid supporter. Her team raised nearly $18,000 for the North Carolina UCP. As Patricia points out on her Ride Without Limits webpage, “[being a] case manager helping others, I have seen how tough it is for individuals to get the help they need.” Being a part of the event was her chance to make access to essential services easier for those in need. In 2008, UCP’s Ride Without Limits will again be held in North Carolina and Florida, with new markets projected for the 2009 line-up. Start Training Now. by Elizabeth Reitz Elizabeth Reitz is the communications specialist of UCP National. For more information visit:

Steve Madden, editor-in-chief of Bicycling Magazine, featured the story in a recent issue. Madden participated in the Tampa Bay ride, and called it “the best-run, most rider-friendly charity event I’ve ever participated in.”

www.ridewithoutlimits.org or call (919) 865-8640 for the North Carolina ride or (813) 239-1179 x219 for the Tampa Bay ride

Karen Ryals, CEO of Tampa Bay UCP, was amazed at the outpouring of support for the event: “Though [our] community has always believed in us and our mission, it was truly touching to see individuals who had no prior association with UCP come out and give their all to help fund our programs and services. I am forever humbled by the selflessness and graciousness of our community.” For UCP and its affiliates, nothing was more satisfying than hearing riders’ personal stories of why they chose to ride: Kathy Zonana did it for her three-year-old son, Max, who has cerebral palsy, and for other children like him. “I am probably the last person who would train for an endurance event, especially while holding down a fulltime job and raising two small children. But when UCP announced the Ride Without Limits, I knew I had to try. ABILITY 61

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ACROSS 1. “Disability hero” Pres. according to Bob Dole 3. “The Police Academy” actor Art, who overcame a severe spinal cord injury 8. “___ Robinson”—Song from “The Graduate” 11. Brew 12. Relaxation noise 13. “The Cryptogram” actor who is a champion of the environment (2 words) 15. Actress Holly who formed the HollyRod Foundation to help fight Parkinson’s disease 17. Sally Ride, the first woman in space, was born here 18. Good 20. Actress Fran who successfully battled cancer 25. Getting out and about 26. 70’s rock group, abbr. 27. Legal eagle org. 30. Laura who plays Dr Kerry Weaver on “ER” 32. Gladiator locale 34. Start! 35. Black ___ event 36. ____ behind the ears 37. “Dynasty” actress, Carroll, who became a spokesperson for breast cancer awareness 39. “East of Eden” actress and major charity supporter, Seymour 40. Halt 42. “___ Hard” Willis film 43. Singer who became a spokesman for Easter Seals, ___ Boone 44. “7th Heaven” star and hunger campaigner 45. Boring routine 48. Amy Winehouse hit song 52. Jamie Foxx role 54. Joyous 57. Hospital show 58. Acting part 59. Alien fly-bys 61. Quebecois gold 62. Women’s Hearts supporter, ____ Bush 63. The March of ____ 64. Second in a movie series

DOWN 1. “Rally with Sally for Bone Health” actress 2. ___ Roy: Scottish hero 3. 3 across’s specialty 4. Plumbing joint 5. Masters starting location 6. Radio wave 7. “We shall ___” moving gospel song 8. “West Wing” pollster who is a strong advocate for the deaf community, Marlee 9. “Another rainy day” singer from the UK 10. Quiet! 14. Be bold 15. Power of attorney, abbr. 16. Devour 19. Dedicated supporter 21. Actress, Taylor, who has campaigned to raise funds to fight AIDS 22. Father’s pride 23. Taking life as it comes (2 words) 24. Priest Holmes’ position 28. The Met contents 29. Came to the help of 31. Civil rights organization 33. Olive or castor 34. Information 36. Disability rights leader and TV personality, Bree 38. Close 41. Ipods, for example 46. Teacher’s assistant, for short 47. Rookie 48. Relative, for short 49. Historic time 50. Airport abbreviation 51. It loves to hug! 53. Meal description 55. Lexus __ 56. Get your ducks all in a ___! 60. Santa ___? answers on page 65 ABILITY 63

SPREAD RESPECT

f all the deplorable tactics used by terrorists around the world, the murderous attack on busy Baghdad markets last February, in which two women with mental disabilities were strapped with explosives and then blown up by remote control, shocked the world. While the specific disabilities of the women remain unknown—one was described as “crazy” and the other may have had Down syndrome—the moral floor has fallen out of the insurgents’ claims to represent a mass movement, and the Iraqi government has rightly pounced on the attacks for their anti-alQaida propaganda value. But a deeper question, about the value or the disposability of persons with disabilities, must be addressed. The Baghdad attacks weren’t the first time persons with disabilities have been exploited and killed for malevolent political ends, and they likely won’t be last. Between 1939 and 1941, the Action T4 program in Nazi Germany systematically killed between 200,000 to 250,000 people with intellectual or physical disabilities, mass murder in the name of “racial hygiene.” Sadly, the hideous exploitation of the women in Iraq doesn’t appear to be an anomaly in modern Middle Eastern terrorism. Afghan security officials have reported that apprehended Taliban bombers with psychiatric disabilities have been seduced, bribed, tricked, manipulated or coerced into blowing themselves up as “weapons of God.” At the end of February, a man killed three Iraqi police officers using a bomb hidden under the seat of his wheelchair. Is this a sign that the number of willing suicide bombers is shrinking? More likely, it’s another example of the desperate turning against one of society’s most castigated and marginalized groups. On this point, there’s much the world community can do. Wide-spread condemnation helps. Al-Qaida has shown itself responsive to public opinion: When al-Qaida leader Ayman Al Zawahiri said the release in Iraq of videos showing beheadings had hurt their cause, the number of these acts fell dramatically. The international community has increasingly recognized the rights of persons with disabilities. Recently the UN Convention on the Rights of Persons with Disabilities entered into force. It aims to ensure that persons with disabilities enjoy human rights on an equal basis with others, and it actively involved persons with disabilities in the negotiation process. The convention specifically indicates that no one shall be subject to torture or to cruel, degrading treatment, and that legislation and policies should be instituted to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted. The convention has been ratified by 26 countries and signed by 129 around the world, many in the Middle East. In the heart of that region, Her Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned of Qatar has pioneered efforts for the education of children with disabilities and the

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inclusion of persons with disabilities in society. Qatar’s Shafallah Center provides comprehensive services and care to individuals with developmental learning challenges, their families and the community. It also recently sponsored a human rights education manual, Human Rights. YES!, which promotes action and advocacy based on the UN Convention on the Rights of Persons with Disabilities. Terrorists adopt—and abandon—their tactics strategically. One would hope the horrors in Baghdad are the death rattle of a bankrupt movement out of options. But as long as there’s a sense that the persons with disabilities are less than human, and that the horror inflicted at their expense can be justified politically, such attacks will continue. Efforts to raise the acceptance of persons with disabilities as full and equal citizens are essential not only for a fair and just world, but for removing the rationale for evil acts perpetrated for a perverse cause.

by Valerie Karr Valerie Karr is a PhD candidate at Columbia University’s Teachers College in New York City, where she studies international perspectives on the rights of persons with disabilities.

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