$4.99 $4.99 Volume 2008 Herschel Walker June/July Walker Herschel 2008 Volume

MAGAZINE VOLUME 2008 HERSCHEL WALKER JUNE/JULY THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY 3 ABILITY ABILITY 3 EDITOR-IN-CHIEF Chet Cooper

MANAGING EDITOR Pamela K. Johnson

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

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

CONTRIBUTING SENATOR U.S. Sen. Tom Harkin (D-IA)

EDITORS Dahvi Fischer Qatar Fortress Renne Gardner Sonnie Gutierrez Eve Hill, JD 6 HEADLINES — Splel Chceker, Drum Therapy, HBO Film Glenn Lockhart Josh Pate Denise Riccobon, RN 8 HUMOR — Man’s New Best Friend Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff 10 GREEN PAGES — An Old Fashion Clothesline; Faucet Aerators CONTRIBUTING WRITERS Linda Boone Hunt 12 DRLC — A Place Called Home Gale Kamen, PhD Valerie Karr

Extremity Games Walker Bounces Back p.42 Laurance Johnston, PhD 14 DOCUMENTARY — Including Samuel Andrea Kardonsky Deborah Max OVINGTON Nobody Walks In Texas Myles Mellor - Crossword Puzzle 20 C — Paula Pearlman, JD Richard Pimentel PATE — Winter Sports Clinic Highlights Allen Rucker 22 Kristen McCarthy Thomas Betsy Valnes

28 OUCH! — Relief for Fibromyalgia HUMOR WRITERS George Covington, JD Jeff Charlebois BILITY ON SSIGNMENT Qatar, Shafallah Forum A Return to Qatar p.32 32 A A — Paralympic Games Beijing Gene Feldman, JD

WEB EDITOR 34 GAIT RESEARCH — Using Chaos For Good in the Middle East Joy Cortes

GRAPHIC ART/ 42 HERSCHEL WALKER — On Getting Help and Getting Better ILLUSTRATION Scott Johnson Paul Kim 52 INCLUSION — Making Strides at the Boys & Girls Club Melissa Murphy - Medical Illustration PHOTOGRAPHY Man’s Old Best Friend p.8 56 BEST PRACTICES — Sprint Has Your Number Music Within Danny Tunner (Walker cover) Chris Apedaile A Ride to Raise Funds and Awareness TRANSCRIPTIONIST 60 UCP — Sandy Adler

CROSSWORD PUZZLE — Guess Your Best DIRECTOR OF BUSINESS AFFAIRS 62 John Noble, JD

MARKETING/PROMOTIONS 64 ESSAY — Spread Respect Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg 66 EVENTS & CONFERENCES Who You Gon Call? p.56 UBLIC ELATIONS ABILITY’s Crossword Puzzle ABILITY’s P R

CONTENTS JSPR 74 SUBSCRIBE TO ABILITY MAGAZINE NEWSSTAND CIRCULATION John Cappello WWW.ABILITYMAGAZINE.COM EDITORIAL [email protected] ADVERTISING DISTRIBUTION CORPORATE SHIPPING For advertising Warner Publishing Services 8941 Atlanta Ave. NON-PROFITS information e mail A Time-Warner Company Huntington Beach, CA 92627 [email protected] Faxon - RoweCom Library Tel 949.854.8700 ABILITY Awareness or call Services TTY 949.548.5157 Habitat for Humanity International 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Samuel p.14 Swets Blackwell PUBLISHER C.R. Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may not be those of ABILITY Magazine POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2008 Herschel Walker June/July Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2008 ABILITY Magazine ABILITY 5 The condition is a chronic, painful neurological disorder HEALTHY ENTERTAINMENT that is characterized by involuntary spasms of the neck muscles that cause twisting, repetitive movements or he movie Michael Clayton received the “Bipolar abnormal postures of the head, and affects about Disorder Depiction Award,” while Georgia Rule 125,000 Americans. It is the third most common move- T and TV’s The Simpsons were also honored for ment disorder after Parkinson’s disease and tremor. providing information about health and social issues at the recent12th Annual PRISM Awards. Murray was forced into early retirement from the NHL due to the debilitating effects of CD. Fortunately, fol- Music, comic books and interactive entertainment were lowing physical therapy and treatment with BOTOX also recognized for their commitment to accurately (Botulinum Toxin Type A), he was able to return the depicting addiction and health issues by the Entertain- Edmonton Oilers and played an important role in the ment Industries Council, Inc. (EIC), the Substance drive to the Stanley Cup Finals in 2006. Abuse and Mental Health Services Administration (SAMHSA) and the FX Network. “I was 31 years old and living my childhood dream of playing professional hockey when I was diagnosed,” “Today, accurate media portrayals of recovery among said Murray, who set an NHL record for most regular- those suffering from addiction and mental illness offer season games played in one season. “I thought my realistic hope to people with these illnesses as well as to career was over. I joined this campaign because I’m their friends and loved ones,” said Terry Cline, Ph.D., a committed to raising awareness of CD. I want to help SAMSHA administrator. and give hope to others who are living with this disease and suffering in silence.” “With over 440 entries, this years PRISM Awards is a significant statement from the entertainment industry,” As part of the campaign, Allergan will provide grants of said EIC president and CEO Brian Dyak. “Not only is $10,000 each to fulfill the philanthropic “wish” of four our industry working to put forth accurate messages CD patients. The “wish” is to provide a service and/or through creative stories, but we are also providing pow- additional resources to a philanthropic and community- erful messengers through the actors’ characterizations.” focused program of their choice, such as community ABC’s Grey’s Anatomy, One Life to Live and The View libraries, senior centers, police and fire departments took home trophies. NBC’s ER, a CBS public service and/or charitable organizations. Entries must be announcement and HBO’s Sopranos, which won or its received by July 21, 2008. depiction of mental health, were also recognized. Win- www.botoxmedical.com ners 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 MEDICATION MISUSE Network’s Brothers and Sisters. quarter of American seniors who are disabled “By spreading the truth about recovery and the benefits reported using at least one prescription drug that it holds for all members of our society,” Cline added, A was inappropriate for their age, according to a “the entertainment industry has been an effective force recent report by the Agency for Healthcare for positive change.” Research and Quality (AHRQ). Thirty drugs, which included Xanax, Demerol, Darvon and Procardia, www.prismawards.com proved ineffective or posed a high risk of side effects for that particular population. Only about half as many (13 SCORE ONE FOR HEALTH ED percent) elderly people without disabilities reported inappropriate medication use, according to 2004 data. llergan, Inc. recently teamed up with the National AHRQ, a Federal agency charged with improving the Hockey League’s (NHL) Rem Murray to launch quality, safety and effectiveness of American health the BOTOX Dreams campaign, which recognizes A care, found that misuse of prescription drugs was more people living with the challenges of cervical common among people with complex disabilities (27 dystonia (CD). percent) than those with basic disabilities (23 percent).

www.ahrq.gov

6 ABILITY DRUM THERAPY A SPCEIAL SPLEL CHCEKER

he world’s largest manufacturer of high quality hotit offers unique writing and reading online drumsticks and drum accessories has joined services for people who suffer from dyslexia, T forces with DAD (Drums and Disabilities) to G dysgraphia or people who are not native-English launch a Global special education curriculum speakers. Ghotit’s first service is an online con- called the Vater Percussion/DAD Program Drum Thera- text sensitive spell checker. py Initiative. The campaign helps children with Autism, Dyslexia, ADD, ADHD, Tourettes Syndrome, ODD, Standard computer spelling and grammar checkers are Aspberger’s and other disabilities develop and enhance designed for the needs of the general population who retention, coordination, self-esteem and physical and demonstrate average spelling abilities, and whose cognitive functioning through drumming. spelling mistakes closely resemble the requested word. Unfortunately, conventional spell checkers don’t work “Statistics indicate the percentage of disabilities present for everybody. in children has increased over 47.9 percent over the past 10 years,” said Pat Gesualdo, Vater Percussion Special The Ghotit team has developed unique spellchecking Education Program Director, and DAD Program Presi- and spell-correcting algorithms designed for the dyslec- dent/CEO. “The significant growth of the disability pop- tic community. Testing of the spelling assistance pro- ulation signals an opportunity to meet the needs of these gram has resulted in 90 percent success. youth.” www.ghotit.com As a result, psychologists, occupational therapists, physical therapists, music therapists, special education teachers and drum instructors throughout the world are using FROM SILENCE TO SOUND drum therapy to help their special needs students and patients develop physical and cognitive functioning. ear and Now, currently showing on HBO, chroni- Vater Percussion will help promote this global cles a couple’s decision to undergo risky cochlear H implant surgery. Irene Taylor Brodsky’s personal education initiative with an exclusive: www.vater.com film memoir won an audience award at Sun- www.myspace.com/patgesualdo dance, and chronicles her parents, Paul and Sally Tay- www.myspace.com/dadprogram lor’s journey from a comfortable marriage of silence www.myspace.com/vaterpercussion into a new, complex and challenging world of sound.

Both 65 and deaf since birth, they were pioneers in the YOU’RE HIRED! deaf community. Sally worked as a teacher and college secretary, and lent her expert lip-reading skills to law ontage Resort and Spa in Laguna Beach, CA, was enforcement investigations, while Paul, an engineer and honored recently for its role in providing employ- retired professor, helped develop TTY, a widely-used M ment for men and women with developmental dis- telecommunication device for the hearing-impaired. abilities. The resort received the Employer Award from the California Department of Rehabilitation. The film is a love story about two people who found one another and grew together, their bond strengthened Montage partnered with Vocational Visions, a Mission by the challenges they faced and overcame as a couple. Viejo, CA-based nonprofit that provides a range of sup- The story also recounts their childhood years spent portive services to Orange County men and women with learning to communicate in a special school, experienc- developmental disabilities. Vocational Visions helped ing the stigma around deafness, and overcoming the the resort train the workers. challenges of being deaf parents of hearing children.

“The entire Montage staff is inspired by the hard work Hear and Now also explores the psychological dimen- and dedication of our Vocational Visions associates,” sions of adapting to the challenges of hearing for the said Carol Reynolds, director of Human Resources for first time. “It’s like a hammer in my head—bang, bang, Montage Laguna Beach. bang!” Paul says of a flock of geese flying by. Sally, enchanted by her lakefront surroundings in upstate Founded in 1974, Vocational Visions daily serves over New York, delights in the sound of water flowing gen- 400 adults with a wide range of disabilities. tly over rocks.

www.montagelagunabeach.com www.hbo.com/docs/programs/hearandnow/index.html www.vocationalvisions.org

ABILITY 7 HUMOR THERAPY

hat in the world would we do without comput- Okay, we finally hit the hot-button subject. It’s hard to ers? I could see not having a phone. Who ignore porno sites when you’re constantly bombarded by Wlikes to make small talk with bill collectors skimpy pictures of chicks in lacy undies, or such subject anyway? I could even see not having a television. lines in your mailbox as “busts loose and panties free.” Believe me, I can make it in this world without Project This stuff can pop up anywhere. (The porno sites, I mean.) Runway. But I can’t live without my computer. For instance, if you put “refinancing my home” into Google, one or two of the searches will say “refinancing I don’t know how I got into such a symbiotic relation- girls in thongs.” You try, but you can’t fight this stuff. ship with this technological beast, and yet she’s become my best friend in the whole, wide world. I haven’t for- We’re also harassed with ads: Crap that pops up when gotten the old days when I used a typewriter, and spent you’re in the middle of researching something really half my time correcting every mistake with Whiteout or important, like “untraceable poisons.” These ads— correction tape. It would take me an hour to write a everything from Viagra to mutual funds—are annoying. paper and three days to fix the misspelled words. I so I wish that pop-up Scottrade helicopter would crash. remember having to look up information in a, uh, book. (Those things with pages between the covers.) How the Obviously, these ads are intended to get you to purchase encyclopedia sales people must despise Google. Those things. You don’t even have to leave your home to shop. were horrible times, when you actually had to know the That’s right ladies, you can do damage right on the com- alphabet by heart. puter. No more having to drag a kicking and screaming man to the mall with you. All the clothes you need are Computers are simply amazing. You can further your right there on the Internet. Just put your guy’s credit knowledge of any subject in a matter of minutes. Last card number on the shopping site, and 48 hours later week I found out that the Queen of England was actual- you’re wearing that new blouse. I know it’s not as much ly a real woman. Very different from the queens of fun as putting your fella through the hell of watching America. I also read that you can clear up acne by you try on things at the mall, but then again you don’t drinking bleach. (I’ll just soldier on with my zits.) You have to put yourself through the hell of filling up your can even find out within seconds when Britney Spears tank with $4 dollar a gallon gas. went to the bathroom. How cool is that? Everything we own is now on our computers. Our docu- My computer knows me better than anyone. It has me ments, movies, songs, pictures, financial statements. We by the Internet cable. If it wanted to blackmail me, pay bills on line because check writing is exhausting, there’d be nothing I could do. It knows where the bones and because one click of the button and you’re done. It are buried. My computer even knows that I listen to The leaves you little time to contemplate how you’re actual- Carpenters and Celine Dion. Definitely, not secrets I ly going to cover the funds. want out in the open. It knows what I’ve plugged into my search engine. In my defense, I was just curious We even put our home movies on the computer for the about erectile dysfunction. As for the pornography, I world to see, as if the world isn’t bored enough. I can’t needed to make sure that my bank-teller sister wasn’t describe what it’s like to watch my three-year-old moonlighting again. daughter dance in the kitchen while the dog runs around her. Wait, yes I can, it’s stupid!

8 ABILITY On the other hand, I don’t really mind the videos of Email allows you to laugh at jokes that you can no teenage clowns skateboarding off rooftops. (They longer laugh at in public. There’s always that friend who probably won’t be with us too much longer, anyway.) must forward you everything that comes their way. It Why make a fool of yourself in private, when you can might be a prayer that could change your stinking life go public and show the world what a jackass you are? and make you a millionaire—if you forward it to 10 YouTube has every video clip that you can think of, people. It could also be a sappy story about other people and two or three of them are actually good. who have more of a stinker life than you do. Don’t you just love those? Sometimes you get something that has a Which brings up another topic: Every time you turn moral to it and is supposed to make you ponder. Can around, your computer proves to you that it can do you say trash bin? something totally new and amazing. At first you could just type documents and print them out. Now you can We can’t forget what the computer has done to bring steal music, edit video, play games, “fly” over some- people together. I’m talking about dating sites. You one’s house and even find out what it’s worth. You can know, where people put up pictures when they were 20 research medical cures, too. Just don’t expect a money- years younger and weighed 60 pounds less, claiming back guarantee. You’re on your own there, Pal. how much they value honesty in a relationship. Every- body’s profile is of the perfect human being. He or she How can anyone doubt Darwinism? Computers are describes how much they like to exercise, read books, clear evidence of evolution. My biggest fear is that one avoid fast food and spend time with that special some- morning my computer will blurt out, “Hello Hal, what’s one with whom they can “just be themselves.” (Hey, on the agenda for today?” being themselves is what got them kicked out of their last relationship.) The downside of these machines are the technical problems. You’re in the midst of doing something—usually Once you’ve found the picture of your dream lover, you extremely urgent—and the damn thing freezes up. Your trade a few emails to begin a new relationship. If you’re heart begins to race. You frantically strike the keys. You a girl, you’re hoping to meet a man with money. If swear. You pray to God. You swear again. You slap your you’re a man, well, you’re just hoping she’s not into that computer. Finally, you use all your technical knowledge long-term thing. Soon you take it to the next level— and, as a last ditch measure, you unplug the thing, and Instant Messaging. Whoo-hooo. The best thing about then plug it back in. It’s just got to work! Nope. Now IM’ing is that you’re completely hidden from that per- your life is on hold until your 10-year-old neighbor gets son, and so you have ample time to think up a good lie. home from school, and comes over to do whatever he does while you sit there and say, “Yeah, I was gonna try BABYLUV: “Why did it take you so long to answer that.” iftell me you were married?”

If you are diagnosed with cancer, Lupus or syphilis that’s TOTALDAWG: “I had to go in the other room and vac- bad, but not as bad as when your computer gets a virus. uum the rug. When you say married, how do you mean Everything could be destroyed or stolen. It’s weird that?” though;, thieves always steal funds out of your account, but never take your debt. How I wish they would break In the old days when you talked to a potential date on into my bank account and pay off my credit cards. We the phone, every “um” and “ah” gave away your decep- need more modern-day Robin Hoods online. tive replies. With IM’ing, the skies the limit. It’s addic- tive. You rush home from work, exited and horny, hop- OMG, the email thing is fantastic. What a great way to ing to spend your evening IM’ing this new Internet love. piss away the day. Nothing like sitting at work and being The steam builds and, finally, the only way to cool your paid to read jokes or look at pictures of naked people on jets is to actually meet this person face to face. That’s mo-peds. Email is also good for keeping in touch with when the fairy tale begins to unravel. 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 Still, we’ve got no choice but to surrender to our com- you, but that weekend I’m cleaning the cat box.” These puters. We can go days without our car or our spouse, are the peeps that you like to have as back up in case you but we can no longer live without our laptops and desk- visit your hometown and need a place to stay, but don’t tops, nor our access to the all-knowing, all-seeing, have money to shell out for a hotel room. omnipotent Internet. Could you imagine a world without the computer? It’s simply unfathomable. What would The other great thing about emailing is that you no the human race do? Spend more time with family? Per- longer need to make that dreadful phone call face-to- form the jobs they were actually hired to do? Read face. You can simply fire off a text message saying you ABILITY Magazine? I shudder at the thought. still don’t have the money quite yet, or let the boss know that you won’t make it into work because you “Ham on have a scratchy throat aka a helluva hangover. 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 Ssuch 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 prac- tice 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 ABILITY 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 Work- ing 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 top- ics include information on packaging, ingredients, disease and toxicity levels.

One of the best features is the “What not to buy” sec- tion, 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 Walways 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 build- ings 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 ABILITY 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 styl- ishly 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, duplex- es 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 single- family 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 Down- town 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 Hitch- cock Memorial Hospital. Samuel had recently come out of a medically induced coma.

Photo(s) Dan Habib, from his documentary film Including Samuel

14 ABILITY our years ago, one of my sons lay in a medically induced coma. Samuel was four years old and had developed pneu- Fmonia 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.

ABILITY 15 Samuel Habib sits on the lap of his father behind the steering wheel of his grandfather's sea plane as they prepare for flight.

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

Samuel high-fives Senator Barack Obama.

son, Isaiah, who was then four. But our youngest child’s disability tested us in new ways. Photo by Sage Wheeler “How can he get a full education and go to college Soon after, I began working on Including Samuel, a 58- when he can’t hold a pencil?” Betsy wondered aloud. minute documentary that was released last year. As a father and as a director, my experience with the project Maybe Samuel’s inability to hold a pencil wouldn’t be helped to calm my fears, while pushing me to examine such a big deal. What if his condition were simply con- my biases. The film became my outlet for processing a sidered another version of “normal”? What if he partici- new reality in our lives: We had a child with a disability. pated in everything that everybody else did?

When Samuel was about one, we found out that he had I made Including Samuel to chronicle our family’s cerebral palsy, which means his brain has trouble con- efforts to mainstream our son into our neighborhood trolling his muscles. He uses a wheelchair, and it’s diffi- school, into social activities intrinsic to our community cult for him to talk. and into the daily routines of our family—every aspect of life. This central thread runs through the film. My wife Betsy and I would stay up nights, comparing notes: What did Samuel do better that day? What did he I wanted audiences to get to know Samuel, who wrestles do worse? We weren’t new parents; we had an older with his brother, loves t-ball and wants to be an astro-

16 ABILITY naut when he grows up. Yet he is only eight, and relies on a story at one of the first local elementary schools to others to continue to include him. This will likely become include kids with disabilities in mainstream classes. I more and more challenging as he gets older. cared about the topic, but it didn’t have much relevance to me at the time. Today, Samuel is in second grade at I also made the film to learn from the choices other peo- this school, Beaver Meadow, and I think about inclusion ple with disabilities and their parents have made. I want- every day. ed to see how these choices have shaped their lives. So Including Samuel also documents the experiences of As Samuel’s dad, I am forced to look at my own preju- Keith Jones, Alana Malfy, Nathaniel Orellana and dices. In years past, when I saw people who couldn’t Emily Huff, along with their families, educators and walk or talk, I often assumed that they weren’t as smart, their communities as a whole. as capable or as worthy of getting to know as others who did not have these disabilities. Now I wonder Is This tale began 20 years ago when, as a newbie staff pho- that how the world sees my Samuel? tographer for the Concord (NH) Monitor, I photographed Recently, Betsy and I decided to attend the Disability During a t-ball game, Leadership Series at the University of New Hampshire Samuel uses a “Bronco” all-terrain walker to hit and get around the bases. Photo Lori Duff/Concord Monitor Photo Lori Duff/Concord

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

ABILITY 17 Emily Huff of Concord, NH, looks in the mirror wearing a cape she created. Huff has Keith P. Jones turns on a boom-box with his foot while teaching schizophrenia. “It gives teenagers in a Boston music and theater workshop. Jones, who has me courage,” she said cerebral palsy, is a leading disability rights activist and hip-hop artist. of the cape.

Alana Malfy walks down the hall at Pem- broke (NH) Academy, a public high school. She is part of a joint program between the Nathaniel Orellana, a first- school and the Univer- grader who has autism, does sity of New Hamp- a greeting exercise at the shire’s Institute on Dis- Haggerty School in Cam- ablity that works to fully bridge, Mass. The school has include students with been recognized as a model the most significant dis- for inclusion of children with abilities into regular disabilities. classrooms.

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 Institute to learn how we could be more effective advo- about the times when illness forces Samuel to miss cates for Samuel. We heard from disability rights lead- weeks or months of school? As an adult, will he find a ers such as Norman Kunc, who spoke about his “right to mate? Will he get a job that fulfills him? Only time will be disabled.” He told us that if he were offered a pill to reveal the answers. But for now, I know that Samuel cure his cerebral palsy, he wouldn’t take it. “I would loves life, he loves to laugh and he loves the Red Sox. have to create my identity all over again,” he said. “I like who I am, I like the work I do.” The Leadership Ultimately, I am certain that my son will teach a lot of Series helped us to see Samuel’s disability as an intrin- people, which is a good thing because the world has a sic part of who he is. lot to learn. by Dan Habib My hope is that my film will inspire the public—especially anyone connected to education—to talk about Dan Habib directed, produced and shot the award-winning Including inclusion in a more informed and innovative way. I also Samuel. He is the filmmaker in residence at the Institute on Disability at the University of New Hampshire. In 2006, he was named national hope they will get to know my son at the same time. Photography Editor of the Year for papers with circulations of 100,000 or less. Until recently, he was photography editor of the Concord Monitor. Making this film helped me envision the life we want His work has appeared in Time, Newsweek and the New York Times. and expect for Samuel. We have a supportive network Habib and his family live in Concord, NH. of teachers, therapists, relatives and friends who help us work towards that goal every day. And there is Samuel For a film trailer and more info, visit: himself whose smile and persistence make clear his own www.includingsamuel.com vision of happiness.

18 ABILITY ABILITY 19 est Texas is the size of New England, with If your chin doesn’t touch your knee as you enter the enough room to tuck in a few small states cab, your truck is a 98-pound weakling. The truck’s bed Wsuch as Rhode Island and Delaware, and yet size is important as well, because it’s directly propor- there are only two doors: That would be the front door tional to the number of dogs you can carry in the back. I and the truck door. am particularly attuned to the “doggie equation” because I discovered that there is something about my The only time a West Texas man would ever consider white cane and hounds in the back of a pick-up that walking is when he’s carrying a high-powered rifle, a don’t mix. I’ve never had a truck with a dog pass me beer cooler and a license to take out Bambi. Occasional- that did not act as though I had just insulted its mother. ly, you will find him hunting birds, but Bambi feeds more people. Besides, a real man would never mount a At first I thought all ranch dogs hated people who bird’s head in his den. 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 I was born legally blind, so I’ve always been a walker. he said, “When they’re in the truck, they think they’re Luckily I enjoy it. Before I moved to the Lone Star bigger than you. But when they’re on the ground you’re State, I lived for 20 years in Washington DC and New bigger and you have the stick.” Good point. York City. During my time on the East Coast, I became accustomed to passing hundreds of people on my daily The link between manhood and automotive infatuation strolls. But the first six months I lived in Alpine, TX, I begins early in the West. One day I was told by a 16 could walk a mile and back to the city post office with- year-old that he skipped school because his truck had out passing a single pedestrian. When I wrote to my broken down, and he would be “humiliated” if he had to friends in the East, I reported that I had become walk eight whole blocks to school. Does anybody really Alpine’s best-known streetwalker. wonder why we have a petroleum problem?

I quickly discovered that in this neck of the woods, a I have decided that the only way to solve my loneliness vehicle is treated with the respect accorded the flag. as I stroll from to place to place is to start my own cult. When there’s a Yield sign, people take it to mean, “I’ll I will point out to the young of the High Chihuahua that yield if you’re bigger than I am,” while Stop stands for Jesus walked his entire life, as did his parents. Abraham, “Spin tires on pavement.” This made me wonder if the father of Judaism, Christianity and Islam never pedestrians might get more respect if they had Ford, bumped down the back roads in a pick-up, either. And it Dodge or Chevy stitched across their pants’ seat? has been independently verified that while he was shooting the film, The Alamo, John Wayne walked all Even if I could see well enough to drive, I’d be no over the set. match for the locals. Here, in the High Chihuahua Desert, the measure of a man is the size of his pick-up’s Take that you truckers! And to my fellow pedestrians, I engine. The terrain is rugged and you need a tough vehi- implore you to hold your heads high. cle. 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. by George Covington

Big matters.

20 ABILITY ABILITY 21 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 Jmultiplied. 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 ABILITY Three weeks later, unable to endure the pain any longer, Afghanistan. he went to a doctor. When the doctors advised him to consider surgery, he was shipped back to the United The Department of Veterans Affairs (VA) and Disabled States via Kuwait and Germany. Even then, however, American Veterans (DAV) sponsor the event, which gets Lujan wanted to get back to his team in Iraq. “I asked additional generous corporate support. 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 Recreational therapist Sandy Trombetta founded the ended up getting back with my unit in Iraq.” clinic in 1986 when he took one veteran on a ski outing. The clinic mushroomed from there. But it isn’t just Two years later, Lujan decided to have the operation to about skiing, or teaching winter sports, or even partying alleviate the discomfort from his injury. “When I woke for a week—although everyone does have a good time. up from the surgery,” he recalled, “I was paralyzed from the waist down.” “When you get out here, you’re surrounded by that brotherhood and sisterhood of other veterans who are Now Lujan has regained feeling up to his knees. He disabled,” said Robert Reynolds, National Commander walks with ankle-foot orthoses, braces that are worn on of the Disabled American Veterans. “I think that aids in the ankle, to keep feet in the correct walking position. the rehabilitation as well.”

“One thing that really affected me after my injury was Lujan agreed. “I can sit and talk to my counselor or my not being able to run because running was a good outlet therapist, but they don’t know what it was like, he for me to relieve stress,” he said. “So when I skied explained. “It’s good to talk to people who have been again, it felt kind of like I was running. It was pretty there and done that.” amazing.” Someone like Robert Reynolds. Again. Reynolds injured his spine in an Army parachute acci- That’s a word a lot of people use when referring to the dent in 1987, and spent almost two years in and out of Winter Sports Clinic, a haven for veterans with disabili- the hospital before being discharged in 1990. Shortly ties who learn or relearn skiing, sled hockey, scuba div- thereafter, he came to the Winter Sports Clinic. ing and even shooting. This year’s event hosted 471 veterans from 44 states who are disabled and who served “Anyone who becomes disabled or undergoes a from World War II up to the current wars in Iraq and catastrophic change in life goes through not only physical

ABILITY 23 changes, but emotional and spiritual changes as well,” “You can track individuals and see how their confidence Reynolds said. “How do you help them regain a produc- builds as the week goes along. They leave here really tive life?” uplifted and want to come back regularly.”

The Winter Sports Clinic is one answer for many, Dennis Best, a Marine Corps veteran and double-above including Reynolds. Over the last 15 years, he has been knee amputee, is back for his 12th year of skiing. “Ski- a participant, volunteer, instructor and now is a supervi- ing is my big thing,” Best said. “I’m a mono-skier. The sor at the Winter Sports Clinic. “I started at my lowest rest of the stuff is nice, but I usually try to stick to the point, when I was at that crossroads of not knowing mountain as much as I can while I’m here.” what I was going to do or where I was going to go,” he said. “It was actually the clinic that rehabilitated me As a 19 year-old during the Vietnam War, Best walked both physically and emotionally.” into a booby trap of artillery rounds. Many of his fellow Marines died in the attack. Although he completed his Now Reynolds shows the veterans of all ages how they rehabilitation at Philadelphia Naval Hospital, he touts can live a quality life. He pushes them to gain the confi- the intrinsic importance of continuing rehabilitation pro- dence they need to realize their true potential. grams such as the Winter Sports Clinic.

Actress Bo Derek, honorary chairperson of the VA’s He brings his 12-year-old daughter, Annie, with him National Rehabilitation Special Events, is an enthusiastic to the clinic where she participates in a weeklong ski supporter of the full range of rehabilitation programs pro- program. vided by the Winter Sports Clinic. “Physical therapy is wonderful, the machines are wonderful, the medicine is “I think her education out here for a week far exceeds fantastic and I know they’re making progress and achiev- what she could have learned in school,” Best said. “She ing miracles all the time,” she said. “But there’s nothing gets to see other kids whose dads and moms are dis- like this mountain and all the competitive sports and ath- abled veterans. It’s important that she knows I’m not the letics. It’s so much more than just basic medical care.” only one.”

For many vets, the mental hurdle of simply navigating In addition to helping to educate their children, most of an airport and flying for the first time after an injury is a the older vets also do their share of mentoring. “I had journey in and of itself. Indeed, the mental rehabilitation World War II and Korean vets to look up to. The Iraq provided by the clinic, according to Dr. Michael Kuss- veterans look up to us,” Best explained. “I think it’s man, Under Secretary of Health for the Veterans Health important for us older guys to show up at the clinic for Administration, is equally important. 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 Reynolds encourages this type of support, which fosters frees them up to do more and more,” Kussman said. 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 U.S. Department of Veterans Affairs 24 ABILITY www.va.gov

uring Larry Barnett’s 30-plus-year career in Rich Tucker has served as a volunteer and a sponsor for Major League Baseball, he served as an umpire 18 years. He first came to see the program as a guest Dfor four World Series, four All-Star games and and then took word of it back to his company, Baxter seven American League Championship Series. If you Healthcare. “We’ve been a sponsor ever since,” Tucker ask him what his greatest life accomplishment has been, said. “There’s only so much an individual can do in life. however, he’ll tell you it’s his association with the Dis- You can’t be all things to all people. So you have to abled American Veterans (DAV) and those it serves. choose something. I chose this because it’s probably the most gratifying thing I could ever do.” “I started volunteering at Veterans Administration hospitals in 1976, and I still visit five of them a month,” he “And believe me,” his volunteer buddy Barnett added, said. Barnett also gives his time to the National Dis- “if you can’t get excited about being around these abled Veterans Winter Sports Clinic, where he’s a spon- young and old heroes, then you can’t get excited period. sor. The Clinic promotes rehabilitation by instructing I had a great career in baseball—37-and-a-half years. I veterans with disabilities in adaptive Alpine and Nordic have a great family. My association with the Disabled skiing, and introducing them to a number of other adap- American Veterans is probably the most important thing tive recreational activities and sports. Barnett has been I have done in my life.” involved with the clinic since its inception 22 years ago, and attended the most recent one last year in Snowmass According to Tucker, the Winter Sports Clinic experi- Village, CO, where he showed participants his baseball ence begins from the moment the vets get off the bus cards and his photos from his years in the game. 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. They step outside, look up and shake their heads at the “I went into a patient’s room. He was like 77 years old,” intimidating slopes. Fortunately, previous clinic partici- Barnett said of a man in an Alabama VA hospital. “He pants help to ease the fears by telling the newbies: found out who I was and said, ‘Would you just please sit ‘Before the week is over, you’re going to be skiing and talk to me? I’ve enjoyed baseball more than any- down that mountain.’ thing in my life. Now that I’ve met you, I’m ready to go to my maker.’ Talk about powerful stuff!” “By Friday, those new participants are either in a sit-ski, standing on skis or assisted if they’re blind,” Tucker Barnett hears these kinds of stories all the time. He is said. “They have grins on their faces as they come down the only person who has been to all 172 VA hospitals in the mountain that you can’t imagine.” the country, according to a spokesman for the Winter Sports Clinic. Barnett estimates he has tallied more than Each year, after a week at the Winter Sports Clinic, Tuck- 3,000 visits. er 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 The Disabled American Veterans produces a promotion- said of the inception of the Winter Sports Clinic. “Now al DVD that features highlights of the Winter Sports we have 77 sponsors along with the DAV and the Veter- Clinic. The disc shows participants in each of the clinic ans Administration. They change these people’s lives, activities, from rock climbing classes and self-defense and it makes an impact on our lives. For 11 months, I courses to snowmobiling and, of course, skiing. visit 55 hospitals and then I’m out here for a week.” That DVD is a hot little item, and Tucker carries it with A week that’s difficult for him to describe. him everywhere he goes. by Josh Pate “You’ve got to come out here and see this. It’s conta- gious, believe me,” Barnett said of his experience Josh Pate works for Turner Sports. He’s covered NASCAR and colle- watching veterans learn how to overcome physical chal- giate athletics, and has written features on sport and disability, the Para- lympic Games and veteran rehabilitation. He lives in Atlanta with his wife lenges, many for the first time since their injuries. and son.

26 ABILITY ABILITY 27 28 ABILITY or decades, few physicians acknowledged come a long way for patients with fibromyalgia. There is fibromyalgia as a bona fide disease. Though the even a Fibromyalgia for Dummies primer. F term was first used 20 years ago, it is still a condition about which relatively little is known and for which Dr. Thomas H. Brannagan III, MD, associate professor there is imperfect scientific support. of Clinical Neurology at Cornell University in Ithaca, NY, recently outlined the current understanding of The history of fibromyalgia dates back to around 1900, fibromyalgia and its treatment in the publication when a British physician named Sir William Gowers Applied Neurology. used the term “fibrositis” to describe a condition whose symptoms he believed were due to inflammation within Using defined diagnostic criteria, the disease is found the muscle fibers. While further study did not support mostly to affect women beginning somewhere between Gowers’s theory, in 1976 Dr. Philip Hench coined what 25 and 40 years old. There may be a genetic predisposi- is considered to be a more appropriate term: fibromyal- tion to develop fibromyalgia—along with major mood gia, which means pain in the muscles. disorders—among family members. Specific gene defects have been associated with a reduced tolerance to Generally speaking, pain is the body’s most common painful stimuli, which is a key aspect of fibromyalgia. and effective way of communicating that something may be wrong, or that we are being injured by some Some of the most important data on the condition comes external entity, as when you touch a hot stove. Pain is from functional magnetic resonance imaging (fMRI), also our most frequent complaint to health care which uses magnetic fields to “map” the brain. These providers, yet we still have a lot to learn about it. diagrams show areas that “light up” when an individual is either performing a task or is subjected to an external As a pain syndrome, fibromyalgia is one of the newest to stimulus, and indicate increased brain activity. be studied. The FDA has recently allowed Pfizer pharma- ceuticals to claim in a television ad that their novel anti- One study involved pressure applied to the thumbnail of depressant drug, Lyrica (pregabalin), is a suitable treat- 16 patients with fibromyalgia at the same time that they ment for it. Since approval of such drug labeling requires were undergoing an fMRI of their brain. The same was scientific study on human subjects, this lends credence to done to a control group of 16 persons who did not have the condition as a real, diagnostic entity. Things have fibromyalgia. Distinct brain activity in the region that

ABILITY 29 detects pain was noted in the fibromyalgia patients, but Another new category of anti-depressants proven not in the control group. effective in this regard is the serotonin-norepinephrine re-uptake inhibitors (SNRI’s). The flagship of these is Depression, fatigue, irritable bowel syndrome, Cymbalta (duloxetine), a medication approved for headaches and insomnia are also commonly associated treating major depression—or neuropathic pain—asso- with fibromyalgia. It is widely accepted that psychoso- ciated with diabetic neuropathy and generalized anxi- cial factors, such as physical and emotional stress, can ety disorder. add to an individual’s experience of discomfort. Cymbalta was found to improve the symptoms of Though some might discount the feelings of one with fibromyalgia in a large, controlled study. While about a fibromyalgia and dismiss the pain as being “all in one’s third of the subjects also suffered from major depres- head,” the truth is that all pain is in our heads because sion, the positive effect of the drug also occurred in a our brains are where we register the sensation of pain. majority of subjects without major depression.

The first step toward effective treatment of any illness is Lastly, Lyrica, the only medication approved by the an accurate diagnosis. But pinpointing this condition FDA for the treatment of fibromyalgia, has apparently can be difficult because the disease is unfamiliar or performed well in large, human trials. This does not unacknowledged by many health care providers. That’s necessarily mean that it is better than other medications, because symptoms are vague and vary greatly from one only that it is better than a placebo, as it was not com- individual to the next. Moreover, the pattern of pain pared to other drugs. does not fit our highly advanced understanding of human anatomy or physiology. If one medication or a combination of them seems ineffective after a period of time, another medication or In truth, vague symptoms are a defining criteria of combination should be considered. This requires careful fibromyalgia. The pain is diffuse and often involves the attention and supervision from a physician knowledge- neck, shoulders, back, hands, knees and hips, or several able in managing the pain associated with fibromyalgia. of these areas at once. To be diagnosed with fibromyalgia, according to the American College of Rheumatology, Some therapies are best avoided because of potential which studies inflammatory disorders, a patient must be negative side effects. These may include narcotic anal- experiencing pain on both sides of the body, above and gesics and anti-inflammatory steroids. If a potent pain below the waist. The pain must be chronic and/or ongo- reliever seems vital to a fibromyalgia patient’s treating for more than three months. A knowledgeable exam- ment, Ultram (tramadol) may prove helpful. iner should be able to identify at least 11 of 18 established “tender points” on various areas of the body. Alternative therapies are worth a try as well. These may include acupuncture or acupressure. Herbal remedies There is also the challenge of cyclical reasoning: Do the without some scientific support or a reliable track record symptoms define the disease or does the disease define the should be suspect until proven otherwise. If you do symptoms? Either way, avoid diagnosing yourself and choose to use herbs, make sure you are not taking dan- seek out a practitioner who is familiar with current med- gerous quantities of potentially harmful substances. ical literature on the topic and is knowledgeable about the disorder, as there are no definitive diagnostic tests. One treatment that has been commonly used, but remains scientifically unproven is trigger-point injec- Even if one doctor has given you a positive diagnosis, tions. A physician who offers these can be assumed to get a second opinion, since fibromyalgia mimics have as good an understanding of fibromyalgia as any- rheumatoid arthritis, polymyalgia rheumatica, Lyme dis- one. An aerobic exercise regimen is also recommended. ease, systemic lupus erythematosis, inflammatory myopathy, polyneuropathy, hypothyroidism, degenera- The good news is that fibromyalgia does not typically tive arthritis and irritable bowel syndrome. progress. In fact, a significant number of patients actually get better after a couple of years. Highly-effective treatment for fibromyalgia remains elu- sive. Cognitive-behavior therapy may help, as may In our next installment of this series, we will discuss physician-supervised courses of anti-depressant medica- neuropathic pain, which refers to the chronic, atypical tions. Selective serotonin re-uptake inhibitors (SSRIs) variety—in other words pain that is not directly correlat- have gained greatly in popularity in recent years. They ed to broken bone, burn or other obvious stimulus. seem to be more effective for most patients and have few bothersome side effects. The granddaddy of these is Until next time, keep well. Prozac (fluoxetine), which has been proven effective in the treatment of fibromyalgia. The combination of a by Thomas Chappell, MD common tricyclic antidepressant, Amytriptyline, used in combination with Prozac, may even be better than each Fellow of the American College of Surgeons FACS; Certified American drug taken separately. Board of Neurological Surgery; Dr. Chappell specializes in minimally invasive neurosurgery, spine and cranial surgery 30 ABILITY ABILITY 31 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 organization and Shafallah Center. The shared goal is to for Qatar, my itinerary remained up in the air. I foster global awareness of autism and speed the pace of Ewas headed for this year’s international confer- research on the condition. ence sponsored by the Shafallah Center for Children with Special Needs. I figured while I was in the neigh- I got a chance to trade a few words with Cherie Blair, borhood, I’d see a bit more of the Middle East as well. Britain’s former first lady. As co-chair of the Shafallah More on that later… forum, she was excited about her nonprofit sports program called Scope. Their new project is Time To Get Her Highness Sheikha Mozah Bint Nasser Bin Abdullah Equal; its aim is to involve one million British people Al-Missned created the Shafallah Center. The nonprofit, with disabilities in sports. It was clear that she was private facility offers diagnosis, evaluation, training and deeply committed and highly passionate about the new developmental services to youth from 3 to 21 by a high- undertaking. ly trained team of specialists. They have expertise in rehabilitation, child and adolescent psychiatry, music “Shafallah” is the Arabic name for the flower of the therapy and so much more. caper plant, which is native to the Mediterranean and Qatar. Capers are pink and white flowers with imma- The topic of the center’s Third Annual International ture, unopened buds. As with its namesake flower, the Forum was Sport and Ability, which included discus- center attempts to cultivate the beauty of its children sions and demonstrations of how sport, recreation and and encourage their growth and development. cultural activities promote global unity. Capital city Doha is in the running for the 2016 A few notable attendees were Sir Philip Craven, president Olympic games and boasts a sparkling jewel in its of the international Paralympic Committee; Ade Adepit- Aspire Stadium. I got an impressive tour by the general ian, Paralymic athlete and BBC broadcaster; Jill Van den manager. The facility is the largest multipurpose indoor Brule, UNESCO; Vivian Fernandez de Torrijos, First sports dome in the world. Designed by the famous Lady of Panama; Dr. Liri Berisha, wife of the Prime Min- French architect Roger Taillibert, it opened in 2005. Part ister of Bularia; Victor Pineda, filmmaker and advocate; of Sport City, Aspire houses an indoor athletic stadium, Alice Elliott, filmmaker; Sarah Reinertsen, athlete and a 6,000-seat football arena, Olympic-sized swimming spokesperson for Nike, Challenged Athletes and Ossur; and diving pools, and seven multipurpose sports halls. Marcie Roth, executive director of the National Spinal Aspire hosted the 2006 Asian Games. Cord Injury Association; Anthony Kennedy-Shriver, founder Best Buddies; Greg Smith, speaker and coach; This year, I was able to get back to the Al Jazeera Film Soula Antoniou, executive director of VSA arts; and Dr. Festival, where most of the movies dealt with the com- Rosemary Kayess, Australian delegate. plexities of life in the Middle East. I also enjoyed a tour of the bay in a dhow (wooden boat), and went shopping Suzanne Wright, co-founder of Autism Speaks, and her at the local souqs (sprawling outdoor markets). While husband, Bob Wright, chairman of NBC Universal, also the international buffet was spectacular and plentiful participated, unveiling a new partnership between their 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;

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

As the conference ended, my travel plans firmed up: I One thing I noticed right away on the streets of Tel Aviv would head on to Amman, Jordan en route to Tel Aviv, were collage-age kids walking around with automatic Israel. One of the many fascinating people that I met weapons. In Israel, every young person must serve in during the event was Hussein Abu al-Ruz, PhD. He’s the army, which is what they were doing. Yet it didn’t secretary general of the ministry of social development feel like a military zone. in Jordan. I did visited touristy places: the spot where it’s believed It turned out that we were leaving Qatar airport on the that Christ was laid to rest, the Wailing Wall and the same plane to Amman. When I mentioned that I had a Dead Sea, which is the lowest place on the planet. Near 12-hour layover, he told me to meet him at baggage the sea is a source of a black, healing mud that people claim. There his car and driver threw my luggage in the from all over the world come to get so they can smear it boot a k a trunk, and we rode to his house. Once there, on their bodies. he got out and instructed his driver to take me around and show me some of the highlights of Jordan. After I couldn’t figure out people were getting it, so I just that, he was to bring me back so I could meet the secre- starting digging. That’s when a guy saw me and pointed tary general’s family. 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 Though the driver spoke no English, somehow we com- and moist texture, even though the area around it was municated. He took me to Roman ruins, through little dry, dry, dry, not to mention hot. For thousands of years towns and villages and on to a lookout point over a val- people presumably have been scraping at these same ley with a view of a body of water. Since I speak no Ara- cave walls, and yet there was still plenty of mud. bic, there wasn’t any point in asking him which body of water it was, rather we silently enjoyed the vista. In Jerusalem, people from the Princess Basma Centre for Disabled Children gave me a tour of their facilities. Back at the house, the secretary general’s 8- and 12- In a surprisingly close relationship between Israelis and year-old sons were excited to speak with a person from Palestinians, their joint findings are benefiting the par- the United States. They chattered happily about differ- ents and children from both sides. ent American movies and music they liked. Apparently American culture is very prominent there. Later, on the As I prepared to head home, I had a chance encounter at way to the airport, the boys hopped in the backseat the Tel Aviv airport, with Natalie Wooller of Mercy behind me and the driver. The 12 year old wanted to be Corps. I’d been trying to arrange to meet with someone an actor and was interested in the fact that I’m with a in her Iraq office as part of my trip. Recently, Mercy magazine that features celebrities. I think he was trying Corps helped create the Iraqi Alliance of Disability to make sure that if he ever came to America, in pursuit Organizations (IADO). For weeks I’m emailing them of the big screen, he would have a place to stay. (Mi and not quite connecting, and serendipitously, at the Casa Su Casa) next airport in Amman, I run into Sarah Ferris, Mercy Corps’s region director for the Arab States. What are the In Tel Aviv, Simona Bar-Haim and Jacob Witkowski chances? by Chet Cooper met me at the airport. We had been communicating via

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

ABILITY 33 34 ABILITY hile random, chaotic acts of violence in the Middle East often trigger fear, some scientists, Whealthcare 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. L to R: Step of Mind’s Mark Belokopytov, PhD, ABILITY editor-in-chief Chet Cooper recently visited Jacob Witkowski, and Simona Bar-Haim, PhD the organization in their Tel Aviv offices, meeting up with Dr. Simona Bar-Haim, the scientific director, and and entropy, which can show if your heart or your brain Jacob Witkowski, the Chief Executive Officer. They is working in a chaotic or variable way or is working in talked about their work and the healing products they a deterministic way. This is the opposite of what is seek to bring to market. Together, the three made a trip widely believed today in conventional medicine: That to Jerusalem’s Princess Basma Centre, which serves the order is healthy and disorder is pathology. Today we Palestinian population, to speak with Bar-Haim’s peer know that there are disorders, which you can measure researchers and see their work first hand. with fractal analysis, that will show that your heart is working in a variable way, and yet is still healthy. Chet Cooper: How did you come up with the idea of using chaos theory? Cooper: So you’re saying that the heart should be working in a variable way? Bar-Haim: It started as part of my master’s degree project, when I met a scientist from one of the cosmonaut Bar-Haim: If you are healthy and young, your heart is programs in Russia. He was a new immigrant in Israel. variable. There are heart rate monitor watches that are By the beginning of the ‘90s, when the communist best for measuring heart rate when you are walking or regime was finished, many new Jews who came here participating in various sports. These are special devices from Russia were scientists. I was studying walk physi- that can measure your heart beat by beat. The mean ology, when I learned that he worked with the idea of average may be 80 beats per minute, but if you are mea- chaos theory as well. suring bit by bit, and you are healthy and young, it may be 79, 78, 77. It will vary. My master’s topic was the rehabilitation of movement disorders. The ex-cosmonaut scientist and I started to Cooper: But within a parameter of order? talk and he became my mentor. I studied physics and specifically chaos theory as it affected systems in Bar-Haim: If suddenly it fell from 80 to 60, that would nature, including thermodynamics, river turbulence and be dangerous. But this small variability– acclimation. Cooper: I guess I’m having a problem with the word Cooper: Acclimation? “disorder,” in that we consider disorder being ill.

Bar-Haim: These are examples in nature where systems Bar-Haim: Pathology. work in a chaotic way or in a non-deterministic chaos. As I continued my research, more and more institutes Cooper: But you’re actually saying that, to a degree, and scientists found that chaos theory exists in some sys- disorder is perfectly healthy? tems in the human body, such as heart rate variability or non-linear brain functioning. The first step was to deter- Bar-Haim: Right. This degree has two characteristics: mine how to measure this. One is very delicate changes, not drastic ones, which are dangerous. Delicate changes mean your heart has These days it’s recognized all over the world that you degrees of freedom to adapt to the environment. This can measure functions of the heart and brain in a non-lin- adaptation can be to temperature, to climate, to your ear way and find characteristics, data and important emotions, physical activity, etc. As you age or face ill- clues that you cannot find with conventional analysis. ness, 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? It’s the same story, almost, with the way our brains func- Bar-Haim: You need to use non-linear or non-determin- tion. They also operate in a chaotic and variable way, istic equations, such as fractal analysis, approximation meaning they have degrees of freedom. One example is

ABILITY 35 the way you reach for a cup of coffee; there are 20 ways mean that they will come to a chair in a bar or a restau- to do it. You could drink it like this or like that. Take it rant and know how to sit in that chair. up with your left hand or your right. Basically, your motor functions have freedom in the way they perform Cooper: That’s why they need to bring the bench with tasks. If this cup suddenly became very heavy, I could them. choose another strategy for how I would pick it up. So chaotic is not the chaos of the Bible; it’s something you Bar-Haim: (laughs) That’s one way to do it. can measure by equations that are acceptable and known. Cooper: In the case of a person who’s had a stroke, If you have brain damage, you may lose this adaptability, what benefits does your approach offer? this variability, this chaotic way of functioning, and can pick up a cup in only one way. For example, someone Dr. Simona Bar-Haim: There are situations where spas- with hemiplegia will do it only one way. Maybe he will ticity and brain damage lead to severe contraction of the succeed in some way to drink his coffee, but if the shape hand, for instance. You can’t get effective movement of the cup changes, or the distance between him and the out of it, meaning the muscles, ligaments and fascia are cup grows or is shortened, he will not be able adapt. so contracted that the only solution is to operate, and we can’t help this person. But if you have a movement dis- Cooper: Was this information that came out of your order of the upper extremity, and you have some passive research? range of motion, it is called a dynamic contracture. This may be a situation where you can increase the function by Bar-Haim: Actually this information has been known applying variability of training on this upper extremity. for about 30 years. What’s novel is the way Step of Mind is using it. We think we can apply this knowledge The three situations are stiff contracture, where the only to develop training and systems to help persons with solution before training is an operation; dynamic con- movement disorders when there’s brain damage. tracture, where it is only spasticity and you can help through activity and training; and a mean position We say, if the brain is working in a chaotic way when a between the two, where there is a dynamic contracture, person is healthy, then you should challenge him in a but it’s already going into a stiff contracture. In the lat- chaotic way in training to bring him back to this healthy ter case, you have to apply some other kinds of treat- chaotic brain. And it’s again very opposite to conven- ment, such as passive movement and stretching. tional therapy, which tries to “correct.” If you are doing an abnormal movement, and you know how the normal Cooper: So what results might you see in someone movement is done, therapists will try to make it as nor- whose fingers are curled, will the fingers be flexible? mal as possible. But when the brain finds its own solu- tions, the restored function is optimal. Bar-Haim: It’s not only assisting with that. It’s bigger than that. You have a major study being conducted in Cooper: Why do physical therapists go for what could the U.S., and now branching out to the rest of the world. be called a more robotic approach? It’s called constrained induced therapy, meaning that for a period of some weeks you constrain the function of Bar-Haim: In the therapeutic environment, a person your healthy hand, and thereby force the brain to use the working with disabilities, especially with motor disabili- parts that have been affected by a stroke. We’ve seen ties, tries to make them look and function like us, some very good results with this. because our eyes are used to seeing typical motions, movements and reactions that we perceive to be aesthet- Our goals with this are transfer and retention. We ic. But this doesn’t mean that it’s optimal for that person. intend to transfer the training from the clinic to the Their brain may find ways to function in the environ- outside world, into a real environment. With retention, ment that will be better and efficient for them, but not you keep the results for a longer time period, even aesthetically pleasing to our eyes. They may not move as when the training has stopped. they used to and that’s okay for them. Cooper: When I was in the lab, you had equipment with If the brain finds its own ways to function in a clinic, variable engines for use on the arms and legs. Was that then these skills can be transferred to the supermarket, what was used in the trial you’re talking about? the garden, the home and the broader community. But if a person with brain damage is just trained to do what Bar-Haim: Yes. We are calling it proof of concept, as we looks normal in the clinic, we know he or she will have are proving the theory. The first stage was my Ph.D. This a more difficult time transferring these achievements was done on the cycling station that you tried in my lab- into everyday life. oratory. Meaning children with cerebral palsy sat there for 10 minutes, and their lower and upper extremities, For example, if you are retraining someone how to sit legs and hands, were moved in a passive, unpredictable, and stand from a special bench in the clinic, it doesn’t random way. They didn’t know where it would go by

36 ABILITY 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.

Cooper: How do you recruit “fallers”? Dr. Simona Bar-Haim and the “cycling station” Bar-Haim: There are inclusion and exclusion criteria direction, speed or frequency, which relaxed their motor when you are planning a study. The inclusion will be control abilities. I disconnected their motor controller persons who are 65 years old and above, with no brain from their use in the pathology of predicted walking. damage, and a history of two falls within the last six months. We’ll have other criteria, like we won’t take The second proof of concept was done in a Middle East persons with Alzheimer’s. research cooperation study funded by the United States Agency for International Development (USAID), in Cooper: How did you connect with the Palestinians? cooperation with the United Cerebral Palsy Research and Educational Foundation. In this study, I instructed Bar-Haim: This is a very nice story. It started with the physiotherapists on how to use these methods. Once peace process with Jordan in 1997. I was asked by our again, it was training that involved chaos and random- State Department, because I’m quite known in Israel’s ness: The child didn’t know how his training program research circles, if I would go to Jordan to teach physio- would start or end. We used all kinds of strategies and therapists. I immediately said yes, because it is in keeping we proved that with this kind of training, achievements with my hope for the peace process in the Middle East. last for a longer period, for more than half a year outside the clinic, in the community and in outdoor activities. So I went to Amman to teach and study data analysis. Later, parents in Amman, Jordan, or in Palestinian vil- This project was funded by Princess Raad Majda, lages reported that their children could function outside cousin of King Hussein (the father). She’s a wonderful their home and schools. They went on to play football lady, and she’s the patron of all the rehabilitation centers with friends outside. for children and adults with movement disorders.

Cooper: They actually started playing football? The American State Department is also funding studies between Israel and Arab countries. It was an agreement Bar-Haim: Yes. Not all of them; it depended on their done at Camp David between Israel’s late President starting point in terms of brain damage. If it was greater, Yitzhak Rabin and one of your presidents. your chances were less and, of course, vice versa. Cooper: That far back? Cooper: The clinical trial involved children with head trauma? Bar-Haim: Most of the money for these U.S.-funded studies is earmarked for agriculture and water preserva- Bar-Haim: Cerebral palsy. tion. 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 cooper- Our final clinical studies which begin in June will take ate with me in Amman, and she found me a physiother- three months, and then we’ll have nine months to vet apist. The two of us decided to develop a consortium, the product, package it, get all the licenses, Food and including Palestine, Jordan, and Israel, and then we Drug Administration approval, etc. applied for this fund and received almost $500,000. We intend to go first to the American market and then to We conducted a study in the Middle East and received Europe. It’s interesting, we’ve already started to line up scientific advice from the United Cerebral Palsy distributors in Europe, and we are in the beginning of a Research Foundation. The best persons in the U.S. in negotiation with one supplier who is in charge of the this area are serving as our advisory board. Now I’m Scandinavian market. asked to go all over Palestine to teach. We have a good relationship. Cooper: What study did you say you were going to do in June? Cooper: When did you meet that particular group? Bar-Haim: We’re con- Bar-Haim: When I taught at the Princess Basma Centre. ducting a disability It serves the Palestinian population, although it’s located study on special shoes in Israel. By definition now, East Jerusalem is Jerusalem, we created. The sensors so what is good about this group is that they cooperate in them give us a lot of with the Israeli government and the Jerusalem munici- data on kinematics, pality, but they also serve the children in Palestine. which means velocity, symmetry of walking Cooper: Tell me how Step of Mind started and your and the variability of vision for the future? walking. The other thing is that we’re using Jacob Witkowski: I met Simona through a friend who is conventional tests the manager of a hospital. He came to me and said that which are varied and reliable, and other tests that are there are two scientists with an excellent idea, and they known and valid. need somebody to help them implement it in the real world. One of the scientists was Simona. After I met Cooper: Where do you perceive this being manufactured? with her and Mark Belokopytov, our third partner, two or three times, I was impressed and knew we needed Witkowski: We don’t know as yet. We are open to sug- seed money. So I partnered with them to establish a gestions. It depends on demand. The other thing is company called Step of Mind, and I contributed seed financial leverage. money, because I believed that this project would be good for humanity. 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. A special shoe with censors provides helpful data on speed, symmetry and variability in walking. 38 ABILITY Witkowski: Very good idea. We would love to work When you are hunched in front of your computer, the with them. neck pain is called the Cinderella effect, meaning that muscle fibers that are recruited first are working all the Bar-Haim: That’s exactly right. There are industrial time and don’t get an opportunity to relax. We would areas where we can give work to Jordanians and Pales- like to develop a gadget that a person will put on him- tinians. My hope is that we will make our products in self, similar to an iPod or telephone, that will work in a the Middle East. random, “sub-threshold” way, meaning the person will not feel that something is being done to them, but the Cooper: Now is the time to do it. device will relax the muscles.

Witkowski: Yes. So that is the first segment. Our second We have another idea centered around sports. All our is elderly fallers. We are working on this project with a ideas are based on the same theory of inducing stress to European consortium. We believe that this product line the brain, inducing motor learning, targeting the brain will be available within two-and-a-half years, maybe for problem-solving and coordination. three. We’re also working on two other segments of the population, one dealing with pain in the neck. Witkowski: We believe that within a period of four to five years, Step of Mind is going to achieve the vision Cooper: Tell me about it! of applying chaos theory to all kinds of products for all segments of the population. We believe that the market Witkowski: (laughs) is enormous, but we are cautious. Our first goal is to try to change the attitude in the professional world so that Bar-Haim: We are thinking of a computer-like gadget they understand that our system is not half-baked, and that a consumer could put on himself. It should be sexy will be valuable to patients. and look like a gadget, because it’s for a young population that is sitting many hours in the front of a computer We speak at a lot of professional conferences to clini- and starting to have neck pain because of it. cians all over the world. We are certain that once our products are tried by leading professionals and our work Cooper: Bad posture. is published, then we’ll increase awareness of what we do and expand the reach of the population we can serve. Bar-Haim: Yes. By the same concept, we know that the muscles are working in—I’m not saying a chaotic way, Another important factor, commercially, is that our prod- but there is one feature of muscle activation that is ucts be affordable. Today, most of the treatment done in called stochatic resonance, meaning that they are work- clinics consumes a great deal of time and money, the lat- ing in a non-ordered way. It’s a bit the same as our ter because the equipment is expensive. We are not going chaos theory. It means that if you have activated muscle to omit clinicians. They will likely always be needed. fibers, there are some features that are random. But we are going to save patients time spent in the clinics by having them use our equipment.

Families in the Princess Basma Centre

ABILITY 39 Cooper: It’s great to see that this is an instance where worked there and focused only on Palestinian children, Israelis and Palestinians are working together. I would have a full-time job.

Bar-Haim: There’s a bit of chaos theory involved in the Cooper: Do you know if there are statistics that indicate background of this as well. I think that Maha [Yas- that there might be more children with disabilities in the mineh, executive director of the Basma Centre] put it Palestinian population? best: She said that clinicians in the Middle East are wise enough to use the conflict in the situation to upgrade Bar-Haim: Many have married amongst themselves, like their professional community, meaning instead of fight- cousins, so you’ll find some genetic diseases that are ing and saying, I’m not cooperating with Israel because more in Palestine, but not cerebral palsy. We don’t know they conquered my land. They said, Okay, this is the why. It’s not a genetic disease, but there are some that reality. Why shouldn’t we learn, upgrade and staff from are genetic, like mental retardation, because of marriage Israel and from Palestine bringing on whomever is within tribes. We have the same stories here in our reli- available to help? gious population because very religious orthodox Jews are not allowed by their rabbis to conduct amniocentesis. The Israelis definitely want to help, and there are those of us who are willing to cooperate. That has helped Cooper: Maha described how Palestinians were quick Basma Centre, which is in East Jerusalem become a to learn. For me, the concept of chaos theory came up center of instructing professional staff. On another level, again as soon as she said that, because they have been they are disseminating knowledge to adult populations going through so many variables, with things changing of professionals in the Palestinian villages, outside constantly, they don’t know what’s next… Jerusalem, far away from the Centre, and all of them are learning from this situation. They are smart women. Bar-Haim: It’s true that their lives are difficult and they have to adapt to changing circumstances quickly. There Cooper: Do you have any anecdotes from the mothers are problems and conflict, but there are good things there. who get to stay in the facilities with the child. Have you been able to get any stories of how their lives have Cooper: Israel is actually like your machine in the lab. changed, any understanding that there’s this connection with Israel at the same time? Witkowski: (laughs) My strong impression from Maha is that she’s taking the best of two worlds. She found a Bar-Haim: My staff and I went to Basma Centre to bridge between Israeli know-how, working with the check the children before the study started. I know that Israeli official offices… and the Palestinian world. Up these mothers were saying, Whatever will help my until a few years ago, the latter didn’t get as much care child. I don’t care what Hamas is thinking. I don’t care as its Israeli counterpart did. Moving forward in this what others are thinking. If the know-how is in Israel, realm is, in my mind, the biggest achievement. then I’m going for it. I hear that from many, many mothers. They are translating it to me from Arabic. www.stepofmind.com They are asking me to come and see their children. If I

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.

40 ABILITY ABILITY 41 42 ABILITY 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 Ithe 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 we talk about them as if they are their condition. We’ll for the Cowboys before retiring in 1997. In 1999, he say, “He’s a schizophrenic,” but we don’t say of some- was inducted into the Collegiate Football Hall of Fame, body who has high blood pressure, “He’s a hyperten- where he was singled out as the second greatest player, sive.” We don’t turn it into a label. after Red Grange, in college football history. Walker: I believe the human mind is so powerful that if Despite decades of adulation, this consummate athlete you tell a kid that he’s bad all the time, he becomes bad. has found it difficult to savor his success. In his new If somebody says, “You’re DID, you’re DID, you’re book Breaking Free: My Life with Dissociative Identity DID,” I become that and I think there’s no way out, no Disorder, Walker recently revealed that he has the men- possibility of getting better. tal condition also known as multiple personality disorder. Recently, he spoke about his challenges with Gillian I now feel that I’ve been blessed with DID, because I Friedman, MD, a psychiatrist and one of ABILITY can see the advantages it’s given me at certain points in Magazine’s health editors. my life. At this point, I’ve got an opportunity to do something good with it by sharing my story with others. Friedman: As a public person, it takes a certain bravery Everyone who thinks DID is bad thinks it because that’s to tell such a personal story. What feedback have you all they see—on television, in movies. They haven’t had received so far? the chance to see the positive aspects of it.

Walker: The majority of it has been positive. The point Friedman: Let’s define dissociation and the specific type of the book was to help people realize that whether you of dissociation called DID. I think your book gives some have DID (Dissociative Identity Disorder) or any other of the best layman’s descriptions of these phenomena type of problem, it’s okay to go out and get help. That’s that I’ve seen. So if you were to explain it to someone, the first thing in recovery, to admit you have a problem what would you say? 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 Walker: I would say that we wear different hats in dif- my football exploits. What I do think He cares about is ferent situations. You have a white hat for your home what I can do for someone else. By getting help and life. You have a red hat for work. You have a blue hat showing others that it’s okay to take care of myself, I’m for hanging out with your friends. As an athlete, you’ve helping others. got a green hat for competition. But with DID, your hats get all mixed up, meaning that your hat for competition Friedman: Was there a turning point for you where you has now become your home hat, your home hat has felt strongly: I’ve got to share my story? become your work hat, your work hat has become some other hat and so on. So now you’re in trouble, because Walker: Do you remember that horrible incident on the your family can’t relate to your competition hat, for news, where some girls filmed themselves fighting example. Plus, you’re feeling out of control and have no another girl, and people just stood around watching? idea what’s going on. 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 What you have to do is get someone to help you to get standing around watching. those hats straightened out again. DID is a coping mechanism to help you overcome something. But you don’t It’s funny, this book was originally just writing that I did want it to take over your life. Meaning if you’ve been as therapy for myself. I’d written hundreds of pages as a abused, you don’t want to become the abuser now; you part of my recovery process. A friend happened to read want to use your strength for good. some of them and said, “Wow, why don’t you make this into a book?” I didn’t hesitate because I thought Maybe Friedman: It sounds as if you’re saying that there are I can reach someone. I know that a lot of players’ wives defenses that you developed unconsciously to help you struggle to figure out what’s going on with their hus- get through certain situations, like your game hat: This bands, and I thought maybe this could also help them is how I deal with what’s going on with me on the play- encourage their husbands to seek therapy—not neces- ing field or This is how I deal with what’s going on with sarily for DID, but for whatever is going on with them. me at school. And you didn’t even realize this was going There are a lot of people struggling with all sorts of on … problems—depression, abuse, drugs and alcohol—and they don’t know where to turn. My feeling is, Let’s not Walker: Right. hide, people. Let’s come out and get help. Friedman: Yes, and because it’s unconscious, you’re not Friedman: One of the things you say frequently in the aware of what triggers that mode. 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 cul- Walker: That’s true. ture, when we talk about people with mental conditions,

44 ABILITY Leaping over a defender for a touchdown in a game at Georgia. Photo by Richard Fowlkes

Friedman: So sometimes you’re triggered at an inap- Walker: You remove yourself totally from it. propriate place. You’re no longer on the football field, you’re at home with your family, and that warrior side Friedman: I’ve noticed that people tend to start dissoci- of your personality takes over, which is not what your ating when they’re very young, and they do it because family needs right then. there’s something going on that is so difficult that they need something protective to allow them to go about the Walker: Right. On the other hand, you may be at home business of growing and developing and working on with your child, feeling loving, giving him a kiss, themselves, even while this horrible thing is going on. maybe a little emotional... But you don’t want to be soft out there on the football field. People would think you’d Walker: Right. totally lost your mind! Friedman: In your book, you mention that for some peo- (laughter) ple the trauma occurs in the home at the hands of the very family that’s supposed to be looking out for the Friedman: I can imagine. So with dissociation, you’re child. Fortunately, you had a loving, supportive family, cut off in some ways from what’s happening in the here but you had a lot of things going on outside that were and now. Parts of your mind remain cut off from other unusually difficult. parts. Walker: Yes. I was extremely overweight as a kid, and I Walker: Yes. had a very bad stuttering problem. I really had no friends, and I got beaten up a lot. Friedman: It’s a more extreme version of compartmen- talization, which people do all the time. For example, if Friedman: It really struck me when you wrote about I have a really bad day where I fight with the husband, being so lonely for connection with other kids, that you the kids act up and I get a flat tire, I can’t take that neg- would approach them on the playground and give them ativity in with me when I see patients. So I have to tuck the few coins you’d been able to scrape up, just to talk those feelings away somewhere. In dissociation, one to you for a few minutes. may not just set the emotion aside, he or she may set the whole experience aside, and the conscious, thinking A lot of people underestimate the seriousness and long- memory may not always have access to the details of standing effects of bullying at school. They think kids what happened. 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.

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. Photo by Tim Gentry Photo by Tim 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.

For someone who has always characterized himself as a Top: Accepting a very self-reliant person, what was it like to seek profes- trophy at a track meet sional help? Bottom: Running track for Georgia 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 And anyone who goes through abuse on a chronic basis realization that there was this thing, and that it was needs some method of coping. Adults can get up and affecting me. That was key. move somewhere else or switch jobs. But kids can’t do that. They have to keep going back into the same situa- Friedman: How far were you into your treatment before tion again and again, no matter how bad it is. For you, the idea of dissociation came up? dissociation allowed you to continue to achieve without being so weighed down by all those traumatic experi- Walker: A couple of months. My therapist mentioned it, ences, which might have held you back if you’d had to but didn’t say much more about it. I laughed. But one endure their full impact. thing struck me as unusual: The therapist asked me to

46 ABILITY look at some of my writing from the year before, com- great, and sooner or later you stop losing time. pare it to my writing from a couple of years earlier, and then compare that to my most recent writing. Now I Friedman: Tell me about the integration process. love to write, and I write a great deal. So examining my writing, I could plainly see that in many places the con- Walker: It’s about bringing the different personalities tent and style was totally different. together. Before integration, you have fragments of your personality that are loose and disconnected. So now you Friedman: Some people discover that when they disso- take those fragments and put them together and you ciate they begin to notice other things, like they’ve pur- become whole and stronger. Instead of being the $6 mil- chased things that they don’t remember buying. Or other lion dollar man, you become the $60 million dollar man. people will describe to them things they’ve done that they don’t remember. They become aware that there are Friedman: It would seem that integration gives you periods of time that are missing for them. more flexibility, too. Dissociation can be an important coping mechanism early on, but as an adult, DID limits Walker: I had a lot of experiences where I didn’t your flexibility. It can be like handling things on autopi- remember going certain places. If it weren’t for my ex- lot rather than having a range of choices in how you wife telling me about a number of things that I wasn’t respond to a situation. aware of, I probably would have never gotten help. From my perspective, everything that went wrong was Walker: That’s right. 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 Friedman: You’ve done individual therapy for a long my ex, and she helped me see that I needed help. time with Dr. Mungadze, and you’ve also gone through intensive treatment in such well-respected programs as Friedman: You wouldn’t remember parts of an evening, the one at Del Amo Hospital in Torrance, CA. What are for instance, and then in looking back, you’d draw a dif- some of the most helpful things you’ve learned in thera- ferent conclusion about what happened? py that allow you to work with your DID?

Walker: Yeah. When there were blank areas, I just Walker: Group therapy was the most helpful. Seeing thought: I can’t remember that because I’ve got a terri- that I share the same experiences with other people ble memory. helps me feel that I’m not alone, and that this condition is for real. It’s something that many of us are deal- Friedman: When you talk about your therapy with Dr. ing with. Mungadze, you talk about some underlying rules for DID therapy. One of the first is that you are responsible Friedman: Interesting that you point to that sense of for everything that you do at all times, whether you are shared experience because one of the themes of your aware of it or not. I think this gets at one of the biggest book is that you’ve consistently felt like an outsider. misunderstandings the public has about DID. Some people think, This is just an excuse for getting away with Walker: Most people would say that I’m a loner; I do a things. But you make it clear that therapy for DID indi- lot of things by myself. cates exactly the opposite. Friedman: Before you started therapy, did you have a Walker: Right. That’s what I call integration. I’m the sense of how frequently you would switch from one part captain of the ship. So all the responsibility, all my of your personality to another? Did it happen several men—whatever hat they happen to wear at any given times a day? time—I’m responsible for their behavior. I appreciate all of them; they’ve done a lot for me. I feel like dissocia- Walker: Back then, I probably did it a lot. tion helped me be a good football player, helped me go to the limit. If I welcomed that, then I have to welcome Friedman: Do you think it’s lessened? the bad as well. That’s the reason I say I’m responsible for it all. 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 Friedman: That makes sense, given that all the sides of was detached; whereas now, that speaker is part of me. you share the same person, share the same body, what affects one affects all. But how do you deal with the I enjoy where I’m at now. Recently someone asked me responsibility of knowing that you’re accountable for if I was worried how the football world would view me what you do, even when you lose time? now that everyone knows “big, strong Herschel Walker” has DID. I said, “It doesn’t matter, because in many Walker: By knowing that I’m human and not a god. I ways I’m better and stronger today than I was back make mistakes, and I can ask for forgiveness. The good then.” thing is that once you integrate, the loss of time is not as

ABILITY 47 Friedman: Let me switch gears and ask about “big, it, so they weren’t gonna let me play. strong Herschel Walker” the football player. In the book, you give a detailed history of your football career, Friedman: So you were a pawn in a war where people and what you were thinking as you went along. You talk did a lot of cut-off-your-nose-to-spite-your-face kind of about how you got into athletics as a kid, your victory maneuvers. season at the Sugar Bowl, your trade from Dallas to Minnesota and your frustration that you did not quite Walker: Yes, and that’s not the kind of person I am. I get to do what you wanted once you were there. 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 I’m going to start with the big one—the move from Dal- have done even more. las to Minnesota. If someone in Minnesota says “the trade,” everyone immediately knows that refers to the Friedman: When you look back on your career, every Vikings’ decision to exchange five players and six draft step of the way you have a lot to be proud of, but what picks to get you. But then, once you got there, it seemed are some of the highlights? 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 Walker: Football-wise, the best part was winning the needed. That must have been an extremely frustrating national championship when I was at the University of situation for you. Georgia that first year. The team stayed together, fought together, believed in each other. It taught me that if Walker: I could have gone against “the trade,” but I you’re unified, you can accomplish great things. Years knew Jerry Jones, the owner of the Cowboys, was a later, I grew a great deal playing under Coach Tom very good businessperson. I think I was thrown into a Landry because he built men, not just football players. situation where I never could have known the outcome. But the people of Minnesota loved me no matter what. Friedman: Do you still maintain relationships with They accepted me. When I was leaving the game, I some of the people that you got to know throughout your made a statement that I would go back and play in Min- career? nesota if only to give the people an opportunity to see what I could really do, because I think they deserved Walker: I do. During my freshman year of college, that. The people make NFL football. So I felt I owed Frank Ros was a senior and took me on as his “little them something. It had nothing to do with the team brother.” I write about him in the book. He and I talk itself, because the team got what they wanted from me. almost every week. A lot of the time, I’m with his fami- Whatever the coaches asked me to do, I did. But the ly or he’s with mine. fans in Minnesota deserved more. Friedman: You wrote that part of the time you were with Friedman: You write about not ever really being able to the New Jersey Generals, Donald Trump owned the understand why, after they traded so much for you, they team. didn’t use you more. Walker: Yes, he owned it the second year that I was Walker: Before I even got there, management and the there. coaches were at war. So now management makes another huge, huge trade that the coaches are not aware of, Friedman: You said that you learned a lot from him. and I got caught in the middle. The coaches didn’t like What kinds of things?

Herschel and Walker: His work ethic, his confidence, getting things another “34”— done, believing in yourself. I tell people all the time: Walter Payton of “You have to believe in yourself, not to the point that the Chicago Bears 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?

48 ABILITY Walker: Yes, I was out of football for about four or five can prepare chicken. Our plants are in Arkansas, but we years, when the anger, the loss of time, and other con- have brokers all over the U.S. cerns began to come up. Looking back, I guess that the regimented football schedule kept me preoccupied, so I Friedman: Did you start with food services and then didn’t notice those other things as much while I was branch out to other areas, such as medical services? playing. Walker: No, I started other companies that I had Friedman: Retirement can be a big identity crisis for someone else run, and then I started the food service anybody. All of us deal with the issues of who we are to give my family members and other people from my and what we’re going to do with ourselves when we hometown better jobs, so they could stay closer to the leave something that’s been a big part of our lives. community and take care of their families. Helping When you have multiple shades of your personality that others is not just giving people things, it’s giving them have been in equilibrium because there’s been a com- opportunities. mon goal, so to speak, they can go out of whack when there’s no longer a common objective. Friedman: What about Herschel’s Famous 34? Is that another company? Walker: I was fortunate that I had already started a couple of businesses and they were doing well. My biggest Walker: (laughs) That’s a brand name on some of the goal in life was not to play football, it was to give a man products that we do. 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 Friedman: Some of the products you make through anything. The purpose of one of the first companies that Renaissance Man Foods? I created was not really to make money, but to employ people. It paid for itself, and I didn’t have to put any Walker: Yes, we have Mama’s Cookin’, Herschel’s money in it. Famous 34, Mama’s Bakin’, among other brand names.

Friedman: That was Renaissance Man Food Services? Friedman: How much of your time is devoted to your Tell me more about that. enterprises? It sounds like you enjoy keeping busy.

Walker: I had Renaissance Man Food Services, Renais- Walker: (laughs) I do. Now the company’s grown to a sance Man Hospitality and Renaissance Man Medical. It point that I’ve had to hire someone to run it for me. I was a name that someone once called me because I have still do appearances and speak a great deal. Currently, so many different interests. The business has grown. I I’m talking to Mark Burnett, the guru behind reality TV. am probably the largest, minority-owned poultry suppli- I have an idea for a show that he and I are discussing, so er in the U.S. We’ve serviced Sysco, one of the largest you may see that in the future. distributors of foods for commercial use. We sell to all the U.S. and Canada, and we’ve sold in Europe and to Friedman: You really are a Renaissance Man! the military. Walker: (laughs) Friedman: So it’s a company that processes poultry? Friedman: I really enjoyed what you wrote about defy- Walker: Yes, we precook, we fry—any way that you ing the “dumb jock” stereotype, because you’ve always

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

ABILITY 49 been “booky”—obsessed with reading and learning. I of your childhood heroes, Alexander the Great. also loved the story of how, when you first got to college, you walked around looking at the architecture. Walker: Aside from Greek mythology, I used to read When you saw Demosthenian Hall, you knew Demos- about Roman athletes and how they worked out in thenes was a famous Athenian orator who led a rebel- Rome. From those stories I created my own workout. lion against the Macedonians and was crushed by one 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 invent- ed 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 invita- tions 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 Walker: Yes. for the University of Georgia as a Friedman: It seems that’s been a constant for you freshman, 1980 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

50 ABILITY I said, “Enough is enough. There will be no more.” I’ve couldn’t offer at that point? certainly known fear. I mentioned that my dissociation may have started when I was a very young child, and I Walker: She felt that she needed me to be totally there. was unusually afraid of the dark. But I know that we She needed me to share what was happening with me, all have strength; we’re all blessed by our Lord Jesus. because that’s the way it had been since we’d met, and I I also know that because of Satan having my play- couldn’t do it. Meanwhile, I felt that I had lost my book, he’s always going to try to fool me. friend, because I couldn’t relate to where she was coming from. 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 Friedman: About some of those differences of opinion, was pure, so no matter what decision I made, it was you wrote: “I was doing my businesses and she wanted going to turn out all right. For someone out there who to relax, and I couldn’t understand that. She would go is struggling, I say, “We’re all blessed, so let’s not run off to play tennis with her friends, and I felt she was away from our illness. Let’s take it on with a positive abandoning me, but she was just living her life.” outlook. Let’s flip the switch on it and see what happens.” Walker: Yeah, she was doing what she always was doing. It was nothing different. But I had more time on Friedman: You had a lot of support from your family, my hands, and for me it was like, It’s Herschel, Her- which is different from the background of many people schel, Herschel. And I felt like, Why aren’t you here who have dissociative problems. Support from your fam- with me? ily makes it a lot easier to grow up with the feeling that you can handle whatever life throws your way. Do you Friedman: These are typical couple issues when people think that was part of your family’s ethic? make a big change. I’m wondering if maybe the silver lining of having something going on—like DID—which Walker: Yes. I have seven siblings, and my family’s moves you into therapy, also gives you an opportunity to my foundation. Some people don’t have the opportuni- reflect and understand other things about your life. ty to build a foundation. A lot of people are not raised with two parents, for instance. I always say everybody Walker: It does. It gives you an opportunity to stop for a falls back on their foundation, and for me that founda- moment and reflect on the truth. If I had not gotten help, tion was built at home. So when I went outside of my I would have always thought it wasn’t my fault, it’s the home, at first I felt like people had shattered that foun- other guy’s fault. He’s the bad guy. He just wasted my dation. It took me a while to get it solid again. But time. He didn’t deliver, so he deserved to be hurt. once I did, people outside my family couldn’t touch me anymore. Friedman: It’s kind of like somebody who develops a rigorous physical regimen because he finds out he’s had Friedman: You write about a lot of prejudice you faced a minor heart attack. Then he changes his lifestyle and in school because you stuttered so severely and you had becomes healthier than before he got sick. the weight problem. People made assumptions that you were not going to amount to much; there was this perva- Helping others improve their health seems important to sive “poor downtrodden Herschel” perception. If you’d you. In the 1990s, you were involved with Health had to experience that at school, and then hadn’t had a South’s “Go for It” Roadshow. Are you still doing that? supportive family to go back to, it could have been a very different situation. Walker: I did that for about seven years, but it’s not around anymore. We went to different cities and talked Walker: It would have been totally different for me, and to kids about staying off drugs, getting an education and that’s the reason why I’m trying to encourage people so on. We spoke to more than five million kids. who might be in that situation to realize that they are worthy, and that they should never let anyone convince Friedman: What other activities in your life are really them differently. important to you right now?

Friedman: Coming back more to the present, the Walker: I give a lot of scholarships to kids around the process of figuring out what was going on with your dis- country. Fifteen percent of all my company profits go to sociation, starting your food service business, and retir- charity. As a person who was blessed, I think it’s my ing from your football career was stressful to your mar- responsibility to share the blessing with others. riage. There’s a point in your book where you describe that even though you and your ex-wife really tried to www.herschelsfamous34.com work together, you admit, “There were parts of me that www.nami.org 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

ABILITY 51 t the impressionable age of eight, Marvin Laster get additional training or have a place to refer kids in became a member of the Boys & Girls Club in need. The program also tracked progress and captured Ahis hometown, Albany, GA. The popular neigh- “best practices.” The pilot sites provided the organiza- borhood hangout gave him a safe haven from the lures tion with several unique programming activities for of the streets. With some 4,300 Clubs worldwide, Boys youth with disabilities as well. & Girls Clubs of America (BGCA) makes sure that children who might otherwise be at home after school with From the top down, BGCA took a step back and no supervision, have a place to go and something pro- reviewed its mission statement and policies to help ductive to do. Academy-Award-winning actor Denzel determine how the national office could be more sup- Washington has often given credit to the club in his old portive of initiatives to include young people with dis- Mount Vernon, NY, neighborhood for keeping him on abilities. To that end, Laster encouraged local clubs to the straight and narrow during his youth. sign BGCA’s Diversity Pledge. He wrote articles on the subject and also encouraged all Clubs to celebrate “Much of the success that I have achieved I attribute to National Disability Awareness Month (October). lessons learned within the club,” says Laster, who’s also enjoyed a life-long relationship with Atlanta-based Laster then sought out alliances with Easter Seals and BGCA. Though he learned a great deal from the older several like-minded foundations such as Mitsubishi staff back in the day, he received perhaps his most valu- Electric America Foundation (MEAF), based in Arling- able ‘take-away’ from a friend named Shawn Luke, who ton, VA, to expand the resources and reach of BGCA’s had a disability. As the two boys played pool and other national-level initiatives. MEAF provides national games at the club, their differences disappeared. grants to projects and organizations that are focused on the full inclusion of young people with disabilities. It “He taught me acceptance,” Laster says. Now, as direc- was serendipitous that they were also looking to team tor of diversity for BGCA, he helps to make sure that up with a “mainstream” organization. message is imparted not only throughout the organization, but also beyond. “The partnership with BGCA represented the perfect intersection of mission, need and opportunity,” says To institute its diversity and inclusion program, Rayna Aylward, executive director of MEAF. “The right BGCA used a “top down/bottom up” approach. From people at the right time are facing in the right direction.” the bottom up, it created a pilot program by identify- ing five clubs that had marked success serving youths Previously, BGCA had formally partnered with Kids with disabilities. These clubs were teamed with local Included Together (KIT), which had an existing rela- Easter Seals affiliates, school systems, agencies and tionship with MEAF. KIT is a San Diego, CA, nonprofit community organizations, so that BGCA staff could that provides training for after-school organizations

52 ABILITY 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.

ABILITY 53 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. Work- Similar to Laster’s experience with his childhood friend ing together, BGCA and KIT developed Embracing Shawn, PALS pairs a child who has a disability with a Inclusion: It’s About All of Us, a programming manual typically-developing kid at the club to cultivate a that offers tips, activities and events that clubs can easi- rewarding learning experience and a climate of under- ly implement. standing and acceptance.

“This initiative has led to significant outcomes in the Making it all work takes money. Mitsubishi Electric advancement of the Boys & Girls Club mission,” says America Foundation has invested $2 million, while its Julius Lott, BGCA’s vice president of diversity. nonprofit partners have leveraged an additional $4 million towards promoting inclusion. MEAF is now help- Though the formal agreements have expired, BGCA, ing to involve other grant makers through the Disability MEAF and KIT continue to work together and remain Funders Network. The presence and reach of such sup- committed to the vision. Their partnership with other port has allowed KIT and other organizations to broaden organizations and agencies has been instrumental in their scope. developing Paths to Inclusion, a resource guide for fully including youths of all abilities into community life. “It gives KIT so much validity to be working with an organization that truly affects so many lives across the This sense of mission is shared by the Boys & Girls country,” says Jan Giacinti the CEO of KIT. “This rela- Clubs of Carlsbad, CA, which recently was presented tionship has put us in a different place.” with an award for furthering the goals of the Americans with Disabilities Act. The club’s Physical and Learning These accomplishments would not have been possible Support (PALS) program earned them a $2,000 cash without key individual leadership. To recognize the award and acknowledgment for their contributions from work of those who have made a measurable and sus- Prudential Financial as well as from the National Orga- tainable impact in promoting the inclusion of youth nization on Disability. with disabilities, MEAF created the Inclusion Champi- on Award. Earlier this year in San Diego, CA,

54 ABILITY 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. [email protected] www.abilityawareness.org

Laster was named its first recipient. Laster reflects. “But in a way, it is. We are in a race to speed up that day when all people, regardless of their Years ago, when he was just starting out, Laster stayed abilities, are fully included in America.” in his hometown after high school to work as a juvenile justice coordinator. He was responsible for implement- by Lauren A. Hoffman ing Boys & Girls Clubs of Albany’s delinquency prevention and intervention programs. His talents were rec- Lauren A. Hoffman is a writer and editor for BGCA. ognized early on by East Albany unit director Michael Boys & Girls Clubs of America: “Skip” Nelson. www.bgca.org

“The program Marvin put together [for delinquency pre- Mitsubishi Electric America Foundation: vention] is the one that we still use today,” Nelson says. www.meaf.org Kids Included Together: Laster eventually left his hometown Boys & Girls Club www.kitonline.org to pursue other opportunities at the organization’s national headquarters, as well as within the Georgia Paths to Inclusion and other resources can be downloaded from Department of Human Resources. After completing his www.includingallkids.org 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.

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

ABILITY 55

he telecommunications industry has come a long Cooper: Let’s talk a bit about some of the relay services way. Prior to 1990, when the Americans with Dis- you provide. Tabilities Act was passed, people with hearing and speech disabilities faced challenges trying to communi- Ligas: Since shortly after the Americans with Disabili- cate via telephone. But the ADA paved the way for the ties Act of 1990, we have been providing services for Telecommunications Relay Service (TRS), which got people who are deaf and hard of hearing and/or speech everybody talking. In recent years Sprint Nextel has disabled. We have contracts with 32 state governments, emerged as an industry leader in expanding TRS to the federal government as well as the U.S. territory of include a vast range of products and services. Puerto Rico and New Zealand. We’ve broadened our service offerings over the years, and now provide video ABILITY editor-in-chief Chet Cooper spoke recently relay and Internet relay. We’re the largest provider of a with Mike Ligas, director of Sprint Relay, and Tammy service called CapTel, or Captioned Telephone, which is Edwards, director of Inclusion and Diversity, about the designed for people who are hard of hearing. company’s continuing innovations as well as its commitment to diversity and accessibility in the workplace. Cooper: How does CapTel work?

Chet Cooper: First off Tammy, what initiatives do you There are two versions of our Captioned Telephone ser- have internally for hiring people with disabilities, vice. We launched the original in 2002 and have been accessibility issues within the organization, community providing that service to a growing number of people outreach... who are hard of hearing. Sometimes we get email about it. A person might write and tell us that they hadn’t been Tammy Edwards: Let me give you some background. able to talk to their grandchildren in years, and now they We’ve had our formal diversity and inclusion organiza- use the telephone like they used to. I love that. tion in place since 2003. With our employee resource groups, our community relations department and our The newest Captioned Telephone service, Web CapTel, external diversity initiatives, we have a united front on was launched this year. With this version, captions how we approach the community in regards to sponsor- appear on your computer screen. You have to be a little ships, as well as to our volunteer programs. In those more computer-savvy to use it, as opposed to the origi- areas we marshal large employee populations to work nal version. But this one allows you to make the font on the needs expressed in certain communities where size bigger and/or a different color. It provides a much our employees live and work. more adaptable transcription of the text. You can essentially enhance it so that it is readable for you. You can So our community outreach takes the form of utilizing use Web CapTel anywhere you can access a computer. what I call the three T’s: the talents of our employees, the treasures from the Sprint foundation and our com- Cooper: Can it be used for international calls? munity relations budgets, as well as the time that our employees spend volunteering to help a variety of orga- Ligas: It’s not eligible for international calls. nizations around the country. Cooper: Do you have it in other languages? Cooper: Do you work with any specific groups? Ligas: It’s also in Spanish. You know, there was another Edwards: When I was involved in our relay products point I wanted to make about CapTel: There’s an opera- like 100 years ago, I know we had programs with Gal- tor involved, just as with any other relay service, The laudet University. We not only provided them funding difference is that the operator is completely invisible to from the foundation, but we also volunteered there. the two parties on the call, meaning that you cannot That was at the national level. Locally, here in Kansas interact with the operator the way you can if you’re where I’m based, we worked with the Kansas School doing, say, Internet relay or video relay. for the Deaf, and two years ago we partnered with the Kaboom! Organization to build a playground at the The operator for CapTel uses specialized speech-to-text- school for the deaf. Mike, want to jump in with some recognition software. If you and I were having this call recent initiatives? and I was using Captioned Telephone, and you were a normal hearing person on the other end, you would hear Mike Ligas: We participate with the National Technical everything I said, and your end of the call would be per- Institute for the Deaf in Rochester, NY, and also with fectly typical. Everything you said, I would hear, but it California State University at Northridge, where there’s would also be cycled through the call center that our a large deaf program. We’re involved with the National vendor provides us, and an agent would also hear what Association of the Deaf, Telecommunications for the you said and revoice your words into a computer spe- Deaf, Association of Late-Deafened Adults and AARP. cially trained to understand that operator’s voice. We’re involved with so many of these organizations, it would probably take an hour to list them all. Cooper: Oh, I get it now.

ABILITY 57 Ligas: Speech-to-text-recognition technology works for Cooper: Tell me about your video relay system? what we call speaker-dependent speech to text. So the agent trains the computer to recognize his or her voice, Ligas: It’s a wonderful product for people who use sign which it does with a high degree of accuracy. Of course, language, and has been a tremendous equalizer and agents have their own log on, and go through extensive communication opportunity. Sprint was the innovator, training to match their voice profile with their computer. along with one of our subcontractors, CSD. In 2002 we launched the nationwide service for video relay, and the One of the things that’s a bit different than a normal call market has subsequently exploded. is that you’re getting two inputs. In the scenario that I talked about earlier, where you and I are having a con- Cooper: Do you have any other services or products? versation and I’m the hard-of-hearing person, I hear your voice, and then I see your text come across my Ligas: There are a couple of different things. First of all, screen about three seconds later. I don’t know if you’ve we have a wonderful line-up of wireless devices for ever watched a taped program, but say it’s a live event people who are hard of hearing. We have been the inno- and you turn both the volume and the captioning on vator of wireless plans for the deaf that are data only, your TV at the same time, you will notice that the and don’t include any voice minutes. speech comes across immediately, but the text comes across after about a two- or three-second delay. The second service I’d like to talk about is Relay Con- ference Captioning. We may be the only provider in the That delay is the processing time that the agent takes to whole country that offers it. We sell this service to a revoice your words, as well as for the computer to turn couple of state governments, the federal government, them into text and spit them out on the screen. It takes a and to a couple of very progressive, disability-friendly bit of getting used to, but it’s not hard. You kind of slow companies such as Hewlett Packard, ESPN and IBM. down a bit. You hear the words, you look at the screen, It’s a conferencing capability so that people who have and you can verify that what you heard was correct, hearing difficulties can participate on conference calls because you can now read. Say, for example, I missed where it is primarily a one-direction type of service. 50 percent of what I heard, I would be able to fill in the blanks with the text that comes across my screen. For example, our CEO does a quarterly webcast, where all 55,000 to 60,000 employees dial into a conference Cooper: Is that text later email-able? call—or webcast—and view the call. On my team, we subscribe to the Relay Conference Captioning service Ligas: On the Web CapTel system, yes. You can save for the people who are primarily deaf or hard of hearing. the conversation, print it, and, I believe, email it. They’re able to see the entire transcript of the call come on their computer screen in real time. So if they have Cooper: Is the service free? difficulty getting an interpreter or using one of the other services, they can still participate. It’s primarily receive Ligas: Yes. There are surcharges of a couple of pennies mode. They do have the ability to ask a question or on everyone’s phone bill in the U.S., which covers the interact with the speaker in a limited form, but it’s main- cost of service for people who have hearing difficulties. ly information going out from a central source. The only charge to the end user is the price of the call. Cooper: On the CapTel that we talked about, you have Cooper: So you’ll get the same cell phone charge, or to log in to do the one on one? You both are logged in? land line rate, if that’s what you’re using. Ligas: On the Web CapTel, only one person has to log Ligas: That’s correct. You can use a cell phone with in—the initiator of the call. It’s a really cool service and Web CapTel as one of the devices on each end of the easy to sign up for. It takes about five minutes or less. call, but you’re not going to see the captions on a wire- At the end, you get an access code. less device. You can see the captions only on your computer screen. Edwards: With our all-employee webcasts, we make closed captioning available for everyone. So when an Cooper: So at this point, this is all web-based. It’s not employee signs up to “attend” one, such as the webcast like text messaging? from our CEO, there’s an option for that employee— whether he or she is deaf, hard of hearing, or speaks Ligas: Correct. It’s definitely not text messaging. Quite English as a second language—to get the feature. frankly, there are some people who are not comfortable with computers, and that’s where the traditional CapTel Cooper: It seems that other companies should follow service is a great support mechanism for their communi- your lead. cation needs. Almost every state in the country has a contract for CapTel. Edwards: Well, we work very hard to create an inclusive culture for all of our employees. We want them to feel

58 ABILITY 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 Insti- tute for the Deaf (NTID) or Gallaudet University. Using Web CapTel, a hard-of-hearing person will see the callers speech-to-text Probably 30 percent of my people have graduated from come across his screen about three sec- NTID, another 30 or so percent from Gallaudet, and onds later 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 hear any stories about ‘the dog logged on and saved the insight into the needs of the community. woman’s life’…

We also have a deaf-blind service with a couple of Cooper: Because it’ll take the dog a lot longer? operators who are blind in our TRS call centers; we have people specially trained to understand those with Ligas: (laughter) And he’ll need to hit the keys just speaking disabilities who handle our speech-to-speech right... The other thing to note is that there is a lot of services. discussion amongst leaders in the deaf and hard of hearing community, with support from providers including Edwards: In addition to the people who are deaf and Sprint, to have a 10-digit numbering system for Internet hard of hearing, we also want to make sure that people calls and video calls that is similar to the 10-digit phone with other disabilities, such as the mobility impaired, for system that hearing people have. Because in the past, instance, also feel Sprint is a great place to work. So you might need to know someone’s IP address to be with our employment materials, our employment web- able to connect to them through either Internet relay or site, as well as our on campus and conference recruiting, video relay. So we’re all working toward a solution that we always make sure that we’re seen as inclusive. makes it easier for people to connect, whether you’re deaf-to-deaf or deaf-to-hearing, by using a 10-digit Cooper: Good. Now do the phone systems that you sell numbering system instead of an IP address. all have accessibility features? Cooper: Tammy, would you talk a bit more about dealing with disabilities internally? Ligas: I’m not an expert on every device that we sell, but I believe that we’re certainly within the FCC man- Edwards: We have an executive inclusion council dates for our T ratings and M ratings. I think 50 percent chaired by our CEO, Dan Hesse. It’s made up of senior of our phones need to be T rated or M rated. [The higher leaders from each of our business units. It’s a very the T and M ratings the less likely the hearing aid user inclusive group in just about every way. The obvious will experience interference while using a cell phone.] being gender and ethnic diversity; we also have an We have a very extensive line-up. It goes from flip employee who has a disability. In this case it happens to phones to full data PDAs that meet those standards. be someone who is mobility impaired and who sits on the executive inclusion council to provide insight for Cooper: Any other subjects that you’d like to talk members of our Sprint population who are disabled. about? Mike has been working with Peter to give us some Ligas: Yes. The new FCC mandate. It essentially insight on how we can perfect captioning for our requires providers of Internet and video relay services to employees. Peter works with our real estate organization offer a full 911 or an E-911 capability. In the past, pin- on ways that we can improve accessibility within our pointing an Internet user’s exact location for emergency stores and offices. So he has been, as well as the other reasons was difficult. In response to the mandate, we’ve members of our inclusion council, a great resource for modified our system. It requires users to provide loca- updating our senior leaders on projects and initiatives tion information when they use a relay service for the that need attention. purposes of dialing 911, if ever needed. So we now can provide equivalent 911 access to the best of our techni- www.SprintRelay.com cal capability. However, you’re probably not going to 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 Wfor a 200-mile charity bike tour is: Bizarre?

Ambitious?

Exhausting?

Try all of the above.

60 ABILITY “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.”

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 accom- But I was motivated by the knowledge that I was help- plishing that. Until last year, I thought it was impossi- ing to transform the lives of children and adults with ble. Somewhere out there is another child, young per- disabilities across America. son or adult like me who thinks the possible is impos- sible. I will try to make a difference for that special The two-day, 200-mile bike ride took place in four cities person.” in three states: San Diego, CA; Raleigh and Charlotte, NC; and Tampa Bay, FL. United Cerebral Palsy (UCP), New to riding, Patricia Blackman became an avid sup- which serves 176,000 children and adults with all types porter. Her team raised nearly $18,000 for the North of disabilities, launched this first-ever Ride Without Carolina UCP. As Patricia points out on her Ride With- Limits. out Limits webpage, “[being a] case manager helping others, I have seen how tough it is for individuals to get As with any charity event, the organization faced chal- the help they need.” Being a part of the event was her lenges, including breaking into new markets and seek- chance to make access to essential services easier for ing to recruit riders with limited affinity for the cause. those in need. While some cyclists, sponsors and volunteers initially knew little about UCP, after the ride they seemed to In 2008, UCP’s Ride Without Limits will again be held form a lasting connection. in North Carolina and Florida, with new markets pro- jected for the 2009 line-up. With the help of traditional media advertising and word of mouth, cyclists and their teams, along with family Start Training Now. and friends, joined together to raise nearly $500,000. by Elizabeth Reitz Seventy percent of the money collected will directly support services and programs provided by UCP affili- Elizabeth Reitz is the communications specialist of UCP National. ates in the markets where the rides were held. For more information visit: Steve Madden, editor-in-chief of Bicycling Magazine, featured the story in a recent issue. Madden participated www.ridewithoutlimits.org in the Tampa Bay ride, and called it “the best-run, most or call (919) 865-8640 for the North Carolina ride or (813) 239-1179 x219 for the Tampa Bay ride rider-friendly charity event I’ve ever participated in.”

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 full- time job and raising two small children. But when UCP announced the Ride Without Limits, I knew I had to try.

ABILITY 61 62 ABILITY ACROSS DOWN 1. “Disability hero” Pres. according to Bob Dole 1. “Rally with Sally for Bone Health” actress 3. “The Police Academy” actor Art, who overcame a 2. ___ Roy: Scottish hero severe spinal cord injury 3. 3 across’s specialty 8. “___ Robinson”—Song from “The Graduate” 4. Plumbing joint 11. Brew 5. Masters starting location 12. Relaxation noise 6. Radio wave 13. “The Cryptogram” actor who is a champion of the 7. “We shall ___” moving gospel song environment (2 words) 8. “West Wing” pollster who is a strong advocate for the 15. Actress Holly who formed the HollyRod Foundation deaf community, Marlee to help fight Parkinson’s disease 9. “Another rainy day” singer from the UK 17. Sally Ride, the first woman in space, was born here 10. Quiet! 18. Good 14. Be bold 20. Actress Fran who successfully battled cancer 15. Power of attorney, abbr. 25. Getting out and about 16. Devour 26. 70’s rock group, abbr. 19. Dedicated supporter 27. Legal eagle org. 21. Actress, Taylor, who has campaigned to raise funds 30. Laura who plays Dr Kerry Weaver on “ER” to fight AIDS 32. Gladiator locale 22. Father’s pride 34. Start! 23. Taking life as it comes (2 words) 35. Black ___ event 24. Priest Holmes’ position 36. ____ behind the ears 28. The Met contents 37. “Dynasty” actress, Carroll, who became a 29. Came to the help of spokesperson for breast cancer awareness 31. Civil rights organization 39. “East of Eden” actress and major charity supporter, 33. Olive or castor Seymour 34. Information 40. Halt 36. Disability rights leader and TV personality, Bree 42. “___ Hard” Willis film 38. Close 43. Singer who became a spokesman for Easter Seals, 41. Ipods, for example ___ Boone 46. Teacher’s assistant, for short 44. “7th Heaven” star and hunger campaigner 47. Rookie 45. Boring routine 48. Relative, for short 48. Amy Winehouse hit song 49. Historic time 52. Jamie Foxx role 50. Airport abbreviation 54. Joyous 51. It loves to hug! 57. Hospital show 53. Meal description 58. Acting part 55. Lexus __ 59. Alien fly-bys 56. Get your ducks all in a ___! 61. Quebecois gold 60. Santa ___? 62. Women’s Hearts supporter, ____ Bush 63. The March of ____ answers on page 65 64. Second in a movie series ABILITY 63 SPREAD RESPECT f all the deplorable tactics used by terrorists around the world, the mur- derous attack on busy Baghdad markets last February, in which two Owomen 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-al- Qaida propaganda value. But a deeper question, about the value or the dis- posability 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 offi- cials 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 marginal- ized 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 behead- ings had hurt their cause, the number of these acts fell dra- matically.

The international community has increasingly recognized the rights of persons with disabilities. Recently the UN Conven- tion 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

64 ABILITY 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 advo- cacy based on the UN Convention on the Rights of Per- sons with Disabilities.

Terrorists adopt—and abandon—their tactics strategi- cally. 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 ANSWERS

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

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