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Volume 2007 Special Holly Robinson Peete

4/6/07

US $4.95 Canada $5.95

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

M ANAGING E DITORS Pamela Johnson Jane Wollman Rusoff

H EALTH E DITORS

E. Thomas Chappell, MD Larry Goldstein, MD Karl Gross, MD

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

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SENATOR HARKIN’S LETTER — Community-Based Services

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HEADLINES — Segway Suit, Woodruff, Accessible Taxcabs, Etc.

Flash web games

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C ONTRIBUTING W RITERS

HUMOR THERAPY — Days Gone Bye-Bye

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GEORGE COVINGTON — Sorry Tail

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ALLEN RUCKER — The New: Recycled

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REMEMBERING STEPHEN — A Tribute

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BABY BOOMERS & HEARING LOSS — Book Excerpt

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BEYOND SPECIAL ED — Disability Legal Rights Center

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CONFERENCE IN QATAR — Shafallah Center for Children

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CHRIS BURKE — After Life Goes On

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AN OPERATION FOR ALZHEIMER’S — Omentum Transfers

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WIDENING MEMORY LANE — Dr. Gary Small Interview

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BOB WOODRUFF — Back From Iraq

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HOLLY ROBINSON PEETE — From Acting to Giving

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TROUBLES AT WALTER REED — A Disturbing Report

DIRECTOR OF BUSINESS AFFAIRS

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SELMA’S HOME — North Carolina’s First ABILITY House

MARKETING/PROMOTIONS

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FLASH GAMES — Accessible Fun For Kids

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WINDMILLS — Leveling The Employment Playing Field

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ABILITY CROSSWORD PUZZLE

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EVENTS AND CONFERENCES

Chris Burke loves to sing

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Jim Baker Michael Bartley Harriet Cabelly George Covington Anne Finger Courtney Gale Linda Boone Hunt Deborah Max Myles Mellor - Crossword Puzzle Allen Rucker Betsy Valnes Jacob J. Wascalus

H UMOR E DITORS Jeff Charlebois Gene Feldman, JD

W EB E DITOR Joy Cortes

G RAPHIC A RT / I LLUSTRATION Bob Woodruff in Iraq

Joy Cortes Leah Demeter Scott Johnson

P HOTOGRAPHY

ABC Lee Woodruff Rick Stevens

T RANSCRIPTIONIST Sandy Adler

John Noble, JD

Lisa Palmer Andrew Spielberg Holly Robinson Peete

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Her Highness Sheikha Mozah speaking to child at the Shafallah Center for Children with Special Needs in Qatar

Jacqueline Bowler Dahvi Fischer Kanani Fong Eve Hill, JD Noelle Kelly Glenn Lockhart Josh Pate Maya Sabatello, PhD, JD Romney Snyder

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

EDITORIAL

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ABILITY Magazine is published bimonthly by C.R. Cooper, 1001 W. 17th St. Costa Mesa, CA 92627 (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. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, 1001 W. 17th St. Dept F, Costa Mesa, CA 92627; Volume 2007 Holly Robinson Peete Printed in U.S.A.

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C.R. Cooper WWW. ABILITYMAGAZINE . COM The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2007 ABILITY Magazine


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EXPANDING ACCESS TO COMMUNITY-BASED SERVICES Dear ABILITY Readers, As many of you know, one of my key priorities in the Senate has been to give older Americans and people with disabilities greater choices by expanding access to community-based services. I want to share with you a recent victory on that front. I was pleased to learn that Iowa will be the first state to receive approval from the U.S. Department of Health and Human Services (HHS) to add home and community-based services as a permanent feature of its Medicaid plan. This means my home state will no longer need to reapply each year for waivers in order to provide cost-effective services to Medicaid recipients. In the official announcement, HHS Secretary Mike Leavitt said, “Stopping the burdensome cycle of continually having to request federal government permission to offer a benefit that is good for people and programs will be a huge relief for states and beneficiaries.” Previously, such waivers were limited to three or five years, requiring states to ask for renewals. The waiver process can take months to complete. HHS expects other states to follow Iowa’s lead in taking advantage of the new provision, which grants new freedom to state Medicaid programs and the people who depend on them. This announcement is a huge step in the right direction, 6

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and I am proud that Iowa will become a model for the nation in providing equal opportunity, full participation, independent living and economic self-sufficiency for all individuals. Since the day we passed the Americans with Disabilities Act (ADA), I have worked to correct the institutional bias in our Medicaid program and to put an end to needless institutionalization. It is difficult for Medicaid recipients to participate fully in our society, and be economically self-sufficient, when their only choice is to live in a nursing home or institution. Giving states the flexibility to allow people with disabilities and older Americans to make their own choices among service options promotes independence. It is also cost effective and consistent with the Supreme Court’s 1999 decision in Olmstead, which affirmed the right of individuals with disabilities to live within their community rather than be forced into institutions. While we can put a dollar figure on the cost savings, more is at stake here: The cost in lost opportunities and lost dreams. When we passed the ADA, Congress created a vision of opportunity, equality and independence. I am happy to report that current Medicaid policy is falling in step with that vision, and making it a reality for millions of older Americans and people with disabilities. Sincerely, Senator Tom Harkin www.harkin.senate.gov


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*HeadlinesPeete0405

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Mall Barrs Motorized Transportation

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man who uses a self-balancing, two-wheeled Segway instead of a wheelchair, recently filed a lawsuit against the corporation that manages a Las Cruces, NM mall for prohibiting him from entering an area of that shopping center. John Funk, who brought the suit, had attended a movie at the mall with his twin daughters, when he attempted to enter the food-court area and was turned away. Funk has severe scoliosis and spinal stenosis and relies on his Segway as his principal assistive-transportation device. Security asked him to leave because it deemed use of that vehicle unsafe in the mall. In a statement, the mall’s management company responded that it is “committed to being an open and accessible mall to all patrons.” But that “safety is also a top priority.” As a result, it has a policy that prohibits” unauthorized motorized vehicles.” “To assist all of our disabled shoppers, the mall is happy to provide wheelchairs, which was offered in this situation.” The American Civil Liberties Union maintains that that was not adequate in this case. “Mr. Funk prefers to use a Segway over a wheelchair, because it allows him to stay at eye level with other people,” said the ACLU’s executive director Peter Simonson. “The mall is penalizing him for trying to overcome the effects of his disability in this way. Too often, people with disabilities are treated as secondclass citizens, shunned and segregated by physical barriers and social stereotypes.” The case seeks unspecified financial compensation, as well as an injunction to allow Funk to continue to use his Segway in the mall. A district judge will hear the case. www.msfocus.org www.aclu.org

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Brain Assoc. Partners with Bob Woodruff

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he Brain Injury Association of America (BIAA) will work with ABC Anchor Bob Woodruff and his family to bring awareness to brain injuries. BIAA will also administer the newly created Bob Woodruff Family Fund for Traumatic Brain Injury (TBI) to assist servicemen and women and their families affected by the war in Iraq and Afghanistan. Woodruff sustained a serious brain injury in January 2006, when an improvised explosive device blew up near a vehicle in which he was traveling. At the time, Woodruff was on assignment for ABC News in Iraq. Although he received superior care, Bob, his wife, Lee, and their extended family recognize that many individuals with brain injuries do not receive the services and support needed to regain their independence. They also understand the lack of funding in the public, private and military sectors. In an effort to give back to the people who saved his life, Woodruff and his family have established the Bob Woodruff Family Fund for TBI. Through various events, it will raise money to fund grants for nonprofit organizations that serve members of the military with brain injuries. In some circumstances, the money may be used to provide direct financial assistance to military personnel and their families, and/or grants for medical research, public education, awareness and prevention of TBI. Recently, Woodruff filed a series of reports for ABC’s World News, Good Morning America and Nightline. His stories covered various aspects of brain injury and included some of the individuals featured in BIAA’s Brain Injury Awareness Month campaign, “Living with Brain Injury: As Diverse as We Are.” When time permits, Woodruff and his family members will serve as honorary spokespersons for BIAA by testifying before Congress and recording public service announcements. www.biausa.org


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Taxi... Taxi

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eneral Motors is celebrating 100 years of cabbing it around New York by rolling into the city’s taxi fleet the only vans approved to transport individuals with mobility-restricting disabilities or spinal cord injuries. “General Motors is dedicated to making automotive transportation easier and more accessible for the millions of persons with disabilities,” said John Gaydash, marketing director of the GM fleet as well as commercial operations. “With the debut of our new, lowered-floor van for taxicabs, we are giving New Yorkers with disabilities mobility—a key element in maintaining independence.” The taxi van uses a Chevrolet Uplander TC (taxi cab) that is modified by GM’s approved upfitter, El Dorado National. A stainless steel floor that is 12 inches lower than the standard floor offers a full 58 inches of interior height without a raised roof. “By lowering the floor instead of raising the roof, we increase accessibility and keep the center of gravity low, which improves the safety of the vehicle,” said Gaydash. “This creates nearly five feet of height in the rearpassenger compartment, allowing all passengers to enter and exit with ease.” Besides public taxi service in New York and elsewhere, the lowered-floor Uplander is designed for airport-shuttle services, rehabilitation and extended-care facilities and private livery companies that serve individuals with mobility issues. www.gmmobility.com

Still Waiting for a Cab

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his one is designed by seasoned automotive engineers with extensive input from the taxicab industry and meets a major need for a cost-efficient taxi that addresses drivers’ concerns as well as those of the public. Groundbreaking features such as interchangeable door panels, fenders and bumpers make it a unique, purpose-

built taxicab which even has a powertrain calibrated for taxi-duty driving cycles to improve fuel economy and emissions. With a focus on safety, the Standard Taxi is designed with anti-lock brakes, a strong frame and body structure, and energy-absorbing bumpers. With a focus on accessibility for all, the new cab provides seating for four in the rear compartment, and additional space for a common wheelchair or scooter. Passengers can get in easily by either stepping inside the vehicle or using a standard recessed access ramp. In addition, the trunk can carry four, hard-case golf bags and a full-size spare tire. Based in Troy, Michigan, The Vehicle Production Group LLC is an original equipment manufacturer of the Standard Taxi, which has been designed and engineered for dual purpose use in taxicab and paratransit fleets. www.standardtaxi.com

BMW Lifts Limits for Buyers with Disabilities

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he BMW Group recently announced that it will lift the reimbursement ceiling for those disabled buyers of BMW and MINI vehicles who wish to make one-time vehicle modifications that make their vehicles more user-friendly. Previously, BMW Group limited the amount it reimbursed buyers. “We are committed to meeting the unique needs of our customers,” said Tom Purves, chairman and CEO of BMW (US) Holding Corp. BMW Group will reimburse buyers of new and certified pre-owned BMW and MINI vehicles for one-time driver modifications, provided certain requirements are met. The vehicles must be purchased or leased from an authorized BMW or MINI dealer, with a receipt that can be verified. Applicants must be able to prove ownership with a valid driver’s license and registration, and then must submit a service invoice outlining all modification costs. Modifications that alter the original engineering and/or operating specifications may impact the New Vehicle Limited Warranty. www.nmeda.org

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Days Gone Bye 10

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want to be young again.

Adulthood has stolen my health. Parenting has imbedded psychological scars. Monthly bills now seem to come weekly. And work has cut into my playtime, big time. I often reflect on my youth while staring at a clump of my fallen hair that is clogging the shower drain. Where did it all go? One day I was driving to the beach with rowdy friends, listening to Stevie Ray Vaughan, and the next day I was driving to Home Depot to get a toilet plunger, listening to Steve Lawrence and Eydie Gorme. Somewhere along the way, I swapped the Doobie Brothers for the Mills Brothers. My father used to make this annoyed look of pain when he came in my room and heard my music. Now my kids see that same face. At some point, I went from cartoons to nightly news. It’s strange. When did an earthquake in Indonesia become more important than the adventures of Huckleberry Hound? As a boy, my only cares were cleaning my room once a month, finding someone’s homework to copy and avoiding the schoolyard bully (she was a monster). Now I worry about interest rates, North Korean missiles, the stock market, acid reflux and whether my 15-year-old daughter will surprise me on Thanksgiving by announcing that she’s pregnant. It was never like this when I was a kid. Back then, I would get up, wolf down a bowl of Captain Crunch, dart outside and ride my bike around until something distracted me. It might be a neighborhood football game, the chance to build a fort or the whim to crawl down into a sewer. I never missed an opportunity to dive into pure mischief. So never, in my wildest dreams, did I think I’d be the man standing on someone’s front porch, holding a child by the collar, telling some parent his kid just hit my car with a snowball. Somehow I’ve gone from Dennis The Menace to Mr. Wilson. That’s another thing: My ears hurt when I hear someone call me “Mister.” I want to yell: “Hey punk, I was you 10

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once. I had those muscles, too—and that… that… hair on your head!” I know I’m old, but why rub BenGay into my wounds by calling me “Mister”? Believe me, I would challenge any kid to a push-up contest—as long as there are emergency technicians standing by with a working defibrillator. I want to spend one day, just one day, making prank phone calls. I want to sit in the sun and burn bugs with a magnifying glass. I want to stay out until four in the morning and sleep until noon, and then have my mom make me a peanut butter-and-jelly sandwich. Speaking of food, I start a diet next week. (I actually started last week, but eating has a crazy way of throwing me off track). When I was a kid my diet was Pop Tarts, cheeseburgers and bubble gum. Incidentally, there’s nothing like a root-canal bill to get you off sweets. As a child, I grew out of clothes by getting taller. Now I grow out of clothes by getting wider. When I sit around the house, I get yelled at by my wife to fix the screen door or by my daughter to drop her off at the mall. I long for those days when only my mom would yell at me. Every time I look in the mirror, I see sad, beaten eyes. This wrinkle wasn’t present last year—I wonder which of my kids chiseled that on my forehead. The latest one appeared after Billy totaled the car. Tell me, why does it seem the majority of my days are spent turning off lights in vacant rooms, adjusting the thermostat and screaming at the kids, “Turn that racket off! Go outside and play!”? (Or the infamous, “Clean up that mess!”) Wow, that marriage-and-family brochure sure looked good before the wedding. Everyone was smiling and there was even a cute yellow Lab in the picture. I don’t want to accept old age. After all, The Rolling Stones don’t—even though they should. It’s sad to watch “Brown Sugar” being performed by a group of senior citizens. Their creaking bones sound better than they do. Instead of “Under My Thumb,” maybe the lyrics should be changed to “Over The Hill.” Rolling


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Stones? I’m facing kidney stones. But I digress. Where was I? I forget, which is a sign of… um… something. I used to pop a few pills in college. Now it’s no longer for fun—I really need them. While kids are smoking weed, I’m busy in the front yard pulling some. What I wouldn’t give to go to a frat party again, but I don’t think I could stay awake for the tapping of the keg. They’d have to pledge-paddle me to wake up. Tap a keg? More like tap a pacemaker. I used to be able to drink all night and then work a full day on an hour of sleep. Now I no longer have it in me. After one drink, stick a fork in me because I’m throwing up. I feel more at home with the bathroom grab bar than the neighborhood bar. Instead of light beer, I’m into that no-calorie, eight-glasses-a-day water routine. It would be so nice to get carded again—the only places that look at my license now are the stores where I’m using my credit card to dig deeper into debt. I look at my statement every month and notice I’ve purchased a lot of things, but none of them seem to be for me (except maybe my regular Brazilian bikini wax). With age, sleeping has passed sex on my priority list. This must be one of God’s jokes, after he made fooling around such a driving force in my twenties. Back then I was willing to get fired from my job if I had the slightest chance of getting laid. (No, I never got fired.) I don’t know how sleep moved to the top of the list. Maybe one night I was making love to my wife and fell asleep. I think the turning point was that it didn’t bother either of us. Who wants sleep over sex? Me and my pot-bellied body, that’s who. At my age, I’m glad I’m married, because if I weren’t and I saw a woman I wanted to sleep with, I’m afraid I would really just want to sleep with her. My grandmother used to say, “Life goes by so fast,” but I never believed her. (She lost credibility with me when she told me the moon landing was actually staged by Elvis.) All I know is, I no longer have milkshakes, pop pimples on my face or go to Grateful Dead concerts. Now my mornings begin with a healthy broccoli-andegg shake, then I spend hours looking in the mirror and praying a zit will replace a deep facial line, grateful I’m not dead. When the highlight of your week is an evening walk around the neighborhood, you’ve got problems. When you can’t wait to dive into that book at night, you’re knocking on death’s door, Baby. I swore I’d never get old, but now I can’t even swear, because I’m a responsible, tired, boring adult who envies and despises the youth of today. Maybe things will be better when I hit 40. by Jeff Charlebois “Ham on a Roll” ABILITY 11


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uring the reign of George Bush the First, I worked as a White House staffer. I reported directly to the vice president, serving as the first and last special assistant for disability policy from 1989 to 1993. Now that the statute of limitations on my silence has run out, I can safely disclose certain well-kept, White House secrets, formerly known by only the most insider of the insiders. No longer being part of the Washington scene, I feel that it is time for the truth to be told: Millie was a bitch. That mutt was one of God’s ugliest creations. It was so ugly that only a kindly soul like George Bush would shower with it. As a White House employee, I was prepared to believe all those long, glowing articles on this sweet, wonderful and beloved first pet of the land. But after 20 years in Washington, I can assure you that you can’t believe the media! Thinking back, I’m reminded of a day when I went to get a cup of coffee in the cafeteria of the old executive office building, and ran across this waddling, toddling, power pup. To begin with, this animal’s legs were too short, probably because the hound was too fat and its legs had actually compressed. Its head was too big, its ears were too long and it had a stupid expression, which probably hid a brain the size of a gnat. I leaned over to let the dog sniff my hand, so it would know I was a friend. Millie sniffed, snorted, turned and waddled off. I had to control the impulse to shout: “If I ever decide to get a seeing-eye dog, don’t bother to audition!” I was willing to accept this as a chance first encounter.

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Maybe Millie simply didn’t warm up to strangers very easily. But in the back of my mind I wondered: Does this mutt treat the secretary of state with such disdain? What about the other cabinet members, the press secretary or my boss, the vice president? Several months later, I was coming from a Rose Garden event as Mrs. Bush was leaving the White House to walk Millie. I decided to give the beast another chance. This time I had my camera with me to document the event. I said, “Here, Millie, Millie, Millie,” in my most condescending, patronizing and loving tone. Again the beast waddled over. She sniffed my shoe, snorted again, turned abruptly and waddled off toward the bushes to do her deeds. I felt like screaming, “What did you expect, Gucci?” I had been snubbed. In hindsight, I realize this cretin was simply hung up on her own publicity. But I’ve checked into those stories about Millie writing books. I now have it on good authority that those books were actually ghost written by one of the Secret Service bomb-sniffing dogs. Looking over the chasm of time, I now wonder, did Millie’s snub result from her smelling the fact that I had been a registered Democrat for 20 years, and had served on the staff of Jim Wright, Democratic Speaker of the U.S. House of Representatives, less than a year before? I’ll never know, because recently a journalist friend told me that Millie had died. My reply: “ I have an alibi!” by George Covington


Rucker Column Peete0403

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misguided analogy between Biloxi and Las Vegas, it is mostly a relabeling that excludes a vast majority of people from the new label. It is snob talk. Take “50 is the new 40.” Who really thinks being 50 today is just like being 40 was a generation ago? Do you think any of the 50-year-old women who punch in every day at the Wal-Mart Superstore in Marietta, Georgia feel 40? What about the paunchy, 50-year-old Xerox salesman huffing and puffing his way around Northern Ohio trying to make his sales quota for the month? Think he’s waking up, saying, “Man, 500 sit-ups and I’m out of here!” Actually, for most people, the calculation runs the other way. Fifty is the new 60, not the new 40. They’re tired. They’re under constant stress from an economy that demands that most middle-class people work 50 to 60 hours a week just to get by. By the age of 50, the world has pretty much beaten these people into an age-specific stupor.

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Of course, if you have plenty of money, work out everyday, stick closely to the South Beach Diet, maybe splurge for a little nip/tuck and are always ready with the right pill for the right moment, you probably do look and feel younger than your mom or dad did in the ‘50s or ‘60s. But by and large, that’s the stuff of ads, whether they are ads for celebrities, called Access Hollywood and People magazine, or ads for youth-enhancing products, called ads. By this point in American consumer culture, if you’re 50 and don’t feel 40, you’re a loser. The worst thing that could happen to a post-menopausal Boomer is to announce your age—“I’m 53”—and have someone reply, “You know, you look exactly 53.”

Which brings me to the subject at hand: the faddish phrase, “(Blank) is the new (Blank).” It’s all the rage as in“50 is the new 40”—popular among aging Hollywood sexpots. Or “Biloxi is the new Vegas”—currently in style among degenerate Southern gamblers who can’t afford the bus fare to Nevada. “The new” or “Is the new” is a shibboleth of our times, maybe the shibboleth of our times, if you discount, of course, the dozens of mind-numbing banalities that ooze out of Washington daily to gum up the public dialogue. “Is the new” can’t really compete with “They hate freedom,” “It’s your money, not the government’s,” or one of my favorites, “Just a few rotten apples.” Abu Ghraib was just a few rotten apples. Corporate fraud and thievery was just a few rotten apples. Hell, the entire Iraq insurgency is, yip, just a few Christian-hating, freedom-hating, deathloving rotten apples.

The most egregious use of the “is the new” cliché was an article in the LA Times about the insanely inflated housing prices in Southern California. The headline was Ten Million Is The New Million. Meaning the milliondollar house, a far-flung fantasy for virtually everyone alive in Southern California, not to mention the whole world, will now cost you 10 million dollars. Who did they write this article for? The four people in the market for a $10 million fixer-upper? Or the eight million salaried breadwinners who know that if they scrimp and save for decades and maybe, just maybe, become the millionaire next door, they’ll still be nine million short.

very funny episode of HBO’s Curb Your Enthusiasm—one of many—had hangdog comedian Richard Lewis complaining bitterly about not getting creative credit for the ubiquitous phrase, “The (Blank) From Hell.” He thought he should get a royalty check, or at least a “as Richard Lewis once famously said...,” every time some barfly in Cleveland announced that he had the wife or the propane tank or the pit bull “from hell.” This would be like copyrighting “Have a good one,”“Been there, done that,” “Forgetaboutit,” or “Duh.” Not that anyone would ever claim authorship of these grating clichés.

A famous commercial-maker once defined “pure advertising” as simply renaming or “repurposing” something to attract a different audience. For instance, if you took Johnson’s Baby Shampoo—which is, duh, shampoo for babies—and repitched it as a gentle shampoo that adults can use everyday, you might hook in adults obsessed about clean hair. And it worked. That’s what “is the new” is all about: relabeling. And except for the occasional

What about a new “is the new” adage, one that demeans status, privilege, and money? “Modesty is the new vanity.” Forgetaboutit. by Allen Rucker Allen Rucker is a best-selling author, public speaker and writes regularly for this magazine. ABILITY 13


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ABILITY Magazine Loses One of Its Own

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rom one office to another I ventured, poking my head through doorways and introducing myself to the people I would spend the next six years working alongside at ABILITY Magazine. With the introductory knowledge that more than 90 percent of the staff possessed a disability of one type or another, I was a little surprised at how typical everyone looked. While I certainly didn’t expect people to be wearing name tags that read “bipolar disorder” or “diabetes,” with the exception of a writer who was deaf and another who had Cerebral Palsy there was little to suggest that disabilities were represented within the office. Regardless, we were a staff dedicated to enhancing the quality of life for people with all types of physical, intellectual or mental health conditions. One way we approached this topic in each issue was through the positive portrayals of people achieving extraordinary, and even ordinary accomplishments despite their disability. Knowing most of us encountered disability on a daily basis—whether through interactions with other staff or our own experiences—one might assume that we maintained the nearly saint-like attitude that all people can do anything as long as they put their minds to it, right? Well, I will only speak for myself when I say: I tried. In reality, I succeeded frequently, but also failed often. Everyday, I found my perceptions were challenged. In many cases, they were perceptions I didn’t even know I had. This was especially true when I met a young man

named Steve Mikailoglu, who applied for the position of graphic-design intern. For some reason, finding an intern for that job always proved more difficult than one might expect. The right applicant had to demonstrate a natural talent for design, a gift for creating original art, and a knack for working dependably within the tight deadlines synonymous with publishing. Candidates possessing all those qualities were rare, to say the least. In was in August of 2002 that Steve, a recent graduate of Platt College in San Diego, California, applied for an internship. He arrived for his interview right on time, his portfolio and his mother in tow. Only now will I admit that as Steve entered the building, belted snugly into his wheelchair, his head resting in a slightly tilted position, I immediately questioned his capabilities. As I watched his mom fill out the application for him, I wondered: How could a man who has quadriplegia, unable to complete his own forms, meet the exhausting demands of a graphic-design internship? Fortunately for Steve, it was ABILITY Magazine and we were all eager to identify his skills and levels of ability. Fortunately for me, it was ABILITY Magazine and I had an opportunity to have my own horizons expanded and paradigms shattered. Steve not only went on to prove himself one of the best interns our publication has ever had, but at the end of his term, he secured one of the few, coveted graphic-design posts. His Godgiven talent, keen eye for design and professionalism had set him apart. Left: Steve, our friend and colleage Top and bottom of pages: Some of Steve’s designs

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Steve’s sister, Selin Martin, remembers one evening she tried to coax her brother away from an article he had taken home to illustrate.

supremely generous soul. He was also a beloved son to Jirayr and Irma Mikailoglu, brother to Selin Martin and her husband Jeff, and very proud uncle to his brand-new nephew, Jacob Steve Martin.

“Is it due tomorrow,” she asked? “No,” he responded. “It isn’t due for more than a week.” Creating art was not only Steve’s way of paying the bills, it was also his passion. I never stopped being impressed by his talents and perseverance. In fact, it sometimes became easy to forget the obstacles he faced in accomplishing the simple tasks that many of us take for granted. Steve had become just one of the team. More than a year after we met, he and I found ourselves in the midst of the tedious stop-and-go traffic Los Angeles is so notorious for. After we’d exchanged the standard pleasantries, and I’d comically tried one too many times to pronounce his last name correctly—Don’t even try it, you’re already wrong!—I finally inquired as to what had caused his quadriplegia. Until that moment it was a question that I “politically correctly” avoided. Steve shared with me his diagnosis of Muscular Dystrophy at the age of seven, and the subsequent progression of his illness; he said it without a hint of self-pity. His family recently shared that it was his fervent faith in God that gave him such profound peace. On March 3, 2007, Steve passed away at the young age of 27, and the only suffering that lingers is in the hearts of those of us he left behind. For Steve was so much more than an example of what a person with a severe disability can accomplish. Deeply loved and a cherished friend to many, including the staff of this magazine and the nonprofit ABILITY Awareness, he was a witty comedian, patient teacher, trustworthy confidant and

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Before he passed away, ABILITY Awareness was nearing the completion of an ABILITY House for Selma Smith, a woman who has severe quadriplegia. Steve volunteered many hours on her project, and eagerly anticipated the day her fully accessible, barrier-free home would be dedicated, knowing it represented the beginning of a new life rich in possibility. For those at ABILITY Magazine and ABILITY Awareness, there is a perfect irony that our colleague and friend left this world on the very day that Selma received the keys to her brand new home. Though Steve’s life may be over, his legacy is very much alive. We miss you Steve, enjoy the chocolate. by Romney Snyder former Sr. Production Editor ABILITY Magazine ABILITY Magazine will create the Steve Mikailoglu Graphic Design Internship Award to be given to qualifying graphic art students in honor of Steve. More information will be posted at ABILITY Magazine's website. Also a new fund has been created in his honor by ABILITY Awareness to further its mission to build a world of inclusion for individuals with disabilities. Donations in Steve's memory can be made on-line at www.abilityawareness.org or by sending a check payable to: The Steve Mikailoglu Memorial Fund ABILITY Awareness 1440 East First Street, Suite 110 Santa Ana, CA 92701


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he new book, Baby Boomers and Hearing Loss: A Guide to Prevention and Care, explores what happens to the rock-n-roll generation after the party’s over. In this excerpt, author John M. Burkey, director of audiology at the Lippy Group for Ear, Nose & Throat in Warren, Ohio, asserts that this aging group—born between 1946 and 1964—is not only living longer than previous generations, but also will need to rely on its hearing more. Since the industrial revolution, people have coped with hearing loss resulting from noise exposure. Loud sounds can damage the effectiveness of our ears. Knowing this, we might conclude that the many governmental regulations aimed at protecting us from industrial and other noise would give baby boomers a hearing advantage over previous generations. This does not take into account boomers’ love of rock and roll, blues and other amplified music. Many in this group have spent a lifetime of being exposed to potentially damaging levels of music. Research clearly shows that the risk to hearing can be significant if the music is loud enough. One group of researchers ultimately concluded that the individuals at risk of hearing loss have “maladapted listening patterns,” such as the habit of listening to extremely loud music for long periods. Although this would not put all baby boomers in jeopardy, it would definitely increase the likelihood of hearing loss for some. boomers who frequent nightclubs or aerobics classes, in which the music is often played at damaging levels, may also suffer hearing loss at higher rates. How many loud places do you routinely frequent after which you experience ear pain, ringing, a plugged sensation or decreased hearing?

Regardless of how we choose to look at this issue of noise-induced hearing loss—industrial, music or other—the picture is not promising for baby boomers. An age-adjusted study conducted in Alameda, California, found that the prevalence of hearing loss nearly doubled between 1965 and 1994. This trend is not something this group should take lightly. In addition to listening habits, baby boomers must factor in the inevitable decline of hearing in old age. The youngest members of this generation are now entering middle age. The oldest members of this generation are entering their sixth decade of life. Although they may all still count themselves as members of the young generation, the math belies this. baby boomers as a group are approaching old age, and the maladies that accompany it. The incidence and severity of hearing loss increase with age. Just how many people become affected is debatable, depending on how we choose to define hearing loss. The percentage is lowest if we only include those individuals with a more noticeable or handicapping hearing loss. In this case, one-third of the people 70 years of age or older are affected. If we use this same age group and also include those with a slight but measurable hearing loss, the percentage jumps to 60. Bridging the gap between these extremes is a study in which 46 percent of the older adults of Beaver Dam, Wisconsin, were found to suffer hearing loss. The average age of the residents was 65.8 years. These statistics will likely parallel what baby boomers are set to experience. Not only does this group face the increas prospect of hearing loss as it ages, but it will likely live longer with ABILITY 17


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the disability than have previous generations. The average baby boomer has a life expectancy at birth of nearly 70 years, which is four to eight years more than that of the previous generation. In fact, the expected longevity for boomers who are alive today is higher than these statistics suggest, because fatalities such as childhood maladies, accidents and other mishaps have already taken their toll. Statisticians have estimated that men who live to 65 years of age can expect to live 16 years longer, and women who live to 65 can expect to live 19 years longer, which represents a lot of years to deal with the prospect of hearing loss. The hordes of baby boomers who are now approaching retirement age are poised to disrupt many long-held plans, promises, assumptions and expectations about retirement. Two of the biggest issues are whether members of this generation will be able to retire and, if so, when. If they must continue to work, then their hearing must be sharper than if they were playing golf with friends in Florida.

requirements could increase to as high as 16 percent to 29 percent per year. Taking this variability into account, one study concludes that one third of baby boomers were accumulating sufficient wealth for retirement under any reasonable set of assumptions. The remaining third may or may not have sufficient wealth for retirement. It all depends on how things actually work out. Government programs that retirees have traditionally relied on such as Social Security and Medicare are likely to be overwhelmed by the number of baby boomers. By 2020, one in six Americans will be 65 years of age or over—20 million more people than were in that age category in 2002. At the same time, the ratio of workers paying taxes into Social Security and Medicare, compared with retirees drawing benefits will be at an all-time low. Even with the former increasing the eligibility age to 67, the cost of this entitlement is expected to rise. It is difficult to envision a scenario in which these realities will not place limitations on baby boomer benefits.

Baby boomers typically see themselves as too young to suffer hearing loss. So when they do, it may Although some would If we start by considerlook to the stock market be seen as a failure of the med- as the answer, this is not ing how well the average baby boomer has without its own probical and scientific advances been saving for retirelems. First, there are obviment, things look pretty ous risks such as the Enron good. The Congressional fiasco or the downturn at the that they have come end of the 1990’s. The biggest Budget Office (CBO) reports that the typical boomer earns a problem arises from the devaluahigher income and has accumulated tion of assets that will occur when to expect. more wealth than his or her parents had at a baby boomers sell their stocks to finance

“”

similar age. The American Association of Retired Persons (AARP) projects that this group will generally earn more in retirement than current retirees. If we look beyond these averages, however, not everyone does so well. The CBO also reports that a quarter of boomers have failed to accumulate significant savings and are likely to depend entirely on government programs for retirement. Another quarter will need to reduce its standard of living. The AARP notes a gradually widening gap between the best-off and worst-off households. In addition, it reports that the lowest-earning 20 percent of baby boomers will receive 80 percent of its income from Social Security.

A number of assumptions go into projecting financial preparedness for retirement. The projections may vary greatly, depending on the specific assumptions and their accuracy. Demographers made this point by noting that, with favorable assumptions, a household could be expected to accumulate sufficient wealth for retirement by saving 3 percent to 9 percent of its income per year. With different assumptions such as a poor return on investments or longer life expectancy, these savings 18

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their retirement. It is difficult to make a profit from selling when everyone is trying to sell. Looking at all of the information that is available to him today, Harry Dent, the financial guru who predicted the stock market boom of the 1990s, forecasts a bear market through the majority of the baby boomer retirement years. He warns that although he expects stocks to do well from 2005 to 2009, the market will most likely lose value after 2010. Family has traditionally formed at least part of the safety net for many people in their retirement years. Children may help with financial support, a place to live or as unpaid caregivers. This support will be less available for many boomers because they had fewer children. By 2020, the number of retirees living alone and without family support is expected to be double what it was in 1990. As a result, this generation may need to be increasingly self-reliant. Perhaps it is not surprising that many baby boomers plan to continue working after retirement. The AARP reported that about 80 percent of this group plans to


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work in some capacity during its retirement years. A growing percentage is planning to work out of financial necessity rather than for enjoyment. A 2000 Texas Department on Aging survey of that state’s boomers found that 68 percent plan to continue to work after retirement. Currently just 12 percent of the older population is employed in the Texas workforce. Hearing loss may also be problematic for many baby boomers because they have high expectations for their lifestyle. They have lived during a very affluent time and would never have become known as the “me” generation without an underlying affluence to support their self-indulgence. A “me” generation would not have arisen during the Great Depression. Poverty and financial hardship have existed during the Baby Boom years, but not with the same incidence found in previous generations. The level of financial hardship known by boomers has more often meant buying fewer record albums or an economy car rather than an inexpensive import. This generation has also lived during a time of seemingly unlimited possibilities. They experienced the startling feats of Sputnik circling the earth in 1957, and a man walking on the moon in 1969. The transistor was invented in 1948 and was followed a decade later by the integrated circuit. This made possible the computer- and information- technology revolutions. Medical advances were made in diagnostics, imaging, surgery, microsurgery, cosmetic surgery, transplants, pharmaceuticals and the like. Regardless of the field, progress seemed to be moving at an ever-increasing pace. Although some people may have felt overwhelmed by these advances, baby boomers were much better prepared to cope and even thrive. They had attained a higher level of education than any previous generation. Nearly 90 percent completed high school, and almost 30 percent completed a bachelor’s degree or higher, according to the 2000 U.S. Census Bureau. This education gave boomers the tools to better understand and benefit from the progress being made. But this progressive atmosphere has not prepared them to graciously accept limits. Baby boomers typically see themselves as too young to suffer hearing loss. So when they do, it may be seen as a failure of the medical and scientific advances that they have come to expect. Hearing loss represents unforeseen disability and hardship. It means one may have to do less or settle for less. Although some boomers may wish to follow the lead of previous generations and try to ignore hearing loss as a problem, this strategy is impractical and almost guarantees a negative outcome. Reduced quality of life becomes a concern. The good news is that baby boomers who suffer hearing loss have medical, surgical and technological solutions that were unavailable to previous generations. They are also more likely to have the education to be able to evaluate these options. Even better, the majority of this generation still have time before hearing loss is likely to be a problem. That is, it is possible to act now to minimize the risk of developing hearing loss. There is also the chance that new treatments will become available between now and the time they’ll be needed. What’s more, we have the option to support research or other hearing-related programs from which we might ultimately benefit. So baby boomers have the chance to take control of—rather than be controlled by—the future quality of their hearing. This excerpt was adapted from Baby Boomers and Hearing Loss: A Guide to Prevention and Care, by John M. Burkey, © 2007 and published by Rutgers University Press ABILITY 19


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ttorney, Teacher, Police officer, Electrician—For too long these dream careers of students with disabilities had remained just a dream. But recently, five teenagers from California stepped forward to file a lawsuit on behalf of over 100,000 students with disabilities, to help them fulfill their vocational goals. For more than 30 years, the federal Individuals with Disabilities Education Act (IDEA) has required public schools to provide special-education services for students, as needed, to help them benefit from public education. These include one-to-one instruction, small-classroom settings, speech therapy or adapted physical education. However, one IDEA requirement that is frequently overlooked by parents, school administrators and even education advocates, are “transition services” to help students with disabilities create a bridge from the schoolyard to the workplace and on to other aspects of adult life. These services are to begin by the time a child is 16, and are to be individually tailored. Traditionally, society has had low expectations for students with disabilities. This has led some schools, parents and policymakers to assume that these children’s adult lives will entail staying home, collecting government benefits or going into institutional settings. These reduced expectations have been largely self-fulfilling: If you don’t prepare a student for employment and independence, she probably won’t get there. As a result, the employment levels of people with disabilities are far below the rest of the population. Only about 35 percent of working-age people with disabilities are employed, compared to more than about 75 percent of those without disabilities, according to a 2004 NOD/Harris Survey. Further, the poll showed that people with disabilities are nearly three times as likely to be poor as people without disabilities. Transition services have the power to brighten what otherwise might have been a bleak future. Some families already think ahead to the day when a loved one will graduate from high school. They seek answers to such questions as Where will my child go to college? Where will she live? But in addition to the plans made at home, federal and state laws also have an obligation to help students with disabilities prepare for success. These services should be flexible and individual, and may include college and vocational counseling, Advanced Placement classes, independent-living skills, as well as internships or job-placement training. All of these services must focus on the particular strengths of the student: What are her interests, skills and abilities? What are his goals? What services will lead to economic and social independence? The school must support the student by bringing the right team to the table, such as representatives from the Regional Center, Department of Rehabilitation, Independent Living Centers and college and university programs. Organizations that provide job preparation or assistive-technology instruction should also be onboard. In December 2005, when attorneys at the Disability Rights Legal Center (DRLC) noticed that several of their teenaged clients did not have transition services in place, they organized a parent meeting. That’s when they discovered the problem was more wide-ranging than they’d initially thought. Worse, the California Department of Education was not providing oversight to ensure that school districts were complying with the law. So in December 2006, the DRLC, Legal Aid Society of San Francisco, Learning Rights Law Center and Latham & Watkins, LLP steped up t to file the lawsuit B.L. v. California Department of Education (CV 06-07630). The goal is to improve school-to-adult transition services for students with disabilities. Time really is of the essence since, as success demands both planning and hard work. These students are willing to do the work, now schools must develop the plan. by Maronel Barajas, Paula Pearlman and Eve Hill, Disability Rights Legal Center www.drlc.org

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s we prepared to close this issue, ABILITY Magazine was packing its bags and heading to Qatar for the Second Annual International Forum on Children with Special Needs. The conference brings together policymakers, educators, persons with disabilities and leaders from around the world to raise awareness about the rights and needs of children with disabilities. The Shafallah Center for Children with Special Needs in the capital city of Doha was again set to host, with the patronage of Her Highness Sheika Mozah Bint Nasser Al-Missned and the support of Honorary Co-Chair Cherie Booth, QC, of the United Kingdom. This conference provides a venue for raising public awareness, expanding on the momentum from the recent signing of the UN Convention on the Rights of Persons with Disabilities. This year’s International Forum on Children with Special Needs is doing this via different media channels, including Sesame Workshop, which presents a compilation of clips and Sesame Street sketches that directly attend to disability issues. Anthony Kennedy Shriver’s Best Buddies program, working in tandem with the Shafallah Center for Children, is launching an initiative to encourage and support meaningful friendships between persons with disabilities and their typically developing peers. The conference has rallied leaders in the media and disability world for a networking exposition of magazines,

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radio shows, books, PSAs and documentaries that offer a glimpse into the lives of persons with disabilities. Through these pioneering media representations, the International Forum highlights media as a positive change agent in the transformation of disability, creating a truly inclusive society.

THE SHAFALLAH CENTER Since its inception in 1998, the recently expanded center provides educational and related services to children from ages 3 to 21, addressing intellectual and developmental disabilities, accompanying physical disabilities and autism spectrum disorders. The school curricula are designed to best meet the needs of students. Children, adolescents and young adults with Down Syndrome, cerebral palsy accompanied by intellectual or developmental disabilities, and autism spectrum disorders make up the majority of the student population. The teachers-to-student ratio is 1:3 in all school programs except the Autism Unit, where the ratio is 1:2. The Early Intervention Unit, for children three to five years old, includes a preschool/kindergarten and emphasizes educational and therapeutic services according to the strengths and needs of each child. At age six, students are transferred to other units or other school programs, according to the type and severity of their disabilities.


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Her Highness Sheikha Mozah Bint Nasser Al-Missned, the Consort of His Highness the Emir of Qatar, Sheikh Hamad Bin Khalifa Al-Thani with her son Sheikh Joaan Bin Hamed Al Thani, the 15th Asian Games Doha 2006 Torch Relay Ambassador at the Qatar Foundation

School Unit One cares for students aged 6 to 14 years with mild to moderate learning challenges, and includes special-education coursework in pre-academic, academic and pre-vocational areas. The curriculum highlights social and daily-life skills. School Unit Two caters to students aged 6 to 21 who have moderate to severe intellectual or developmental disabilities. The majority have multiple disabilities, often with a combination of intellectual and physical disabilities. Individualized teaching combined with assistive technology helps students learn daily living skills and achieve a measure of independence. At the same time, socialization and leisure education are emphasized to increase quality of life.

SPOTLIGHT ON QATAR Qatar is located along the Arabian Peninsula. After

centuries of being ruled by others, it became an independent state in 1971. Under the current Emir, Hamad bin Khalifa Al-Thani, who has ruled since 1995, Qatar has been credited with considerable sociopolitical liberalization, including the empowerment of women, a new constitution, and the launch of a free press. Qatar ranks as one of the richest countries in the world, with an economy buoyed by its oil and natural gas resources. In 2006, Qatar hosted the Asia Games. Also, Qatar is known for it education centers, including the Shafallah Center for Children with Special Needs, as well as Education City, a 2,500-acre campus that hosts branches of world-leading universities such as Georgetown University, Weill Medical College of Cornell, Virginia Commonwealth, Texas A&M and Carnegie Mellon University. www.shafallah.org.qa ABILITY 23


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n the summer of 1989, when I was a LIFE magazine reporter, I heard that a young man with Down syndrome would be starring in a new TV series called Life Goes On. Intrigued, I sent a note to my editor in New York. He was less interested. “We’ll just do a photo and a caption,” he said. To me, the story was huge. Since childhood, I’d been casual friends with Carmen, a bright, charming young woman with Down syndrome. Her parents had mainstreamed her into our small-town Alabama church and community. She’d graduated high school with me, going on to work in a plant nursery. My connection to Carmen made me curious to see how well television would depict a person with Down syndrome. By many accounts, ABC did a commendable job. Life Goes On ran on the network from September 1989 to May 1993, winning a number of awards. The drama centered around the Thatcher family, who’d also wanted to mainstream their son, Charles "Corky" Thatcher, played by Chris Burke, after he’d spent years in specialed classes. Their daughter Becca, played by Kellie Martin, was gifted but socially awkward. Theater actress Patti LuPone played the mother and Bill Smitrovich the father. (Two different actresses played the part of an older sister, who remained on the fringes of the story.) When I first made my inquiries, the show’s initial airing was still months away, and my New York editor was still none too encouraging. I went to Warner Brothers Studios in Burbank to meet Chris Burke anyway.

CHRIS ON CORKY I spent the day with the actor, who was 23 at the time, and his father, along with the cast and crew of the series. I liked Chris immediately. From the first few minutes, he had me laughing—or groaning—with his puns and awful jokes. He remembered that day, too, when I spoke with him

again recently. Today, at 42, he still gives his old show high marks for covering uncharted territory: “Back in those days, a parent looked at the disability and didn’t see the ability,” he recalls. “Life Goes On showed that people with a disability can be included. Just give them a chance and let them learn. That’s what the show was trying to teach.” By the end of the series, Corky had a job as an usher at a local movie theater, and found a girlfriend, who also had Down syndrome, whom he married. During production, the series’ writers often looked to Chris and his family for situations they could dramatize. “I think it was a good picture of what it is like to have Down syndrome, and what it’s like for a parent who has a child with Down syndrome or a disability,” he says. The overall character of Corky had many qualities Chris is famous for within his circle of family and friends. The actor notes, “Corky is the one who never gives up. I never gave up. He faces obstacles and he couldn’t always reach his goals. But he tries to reach his dreams. Corky is an ordinary person who does extraordinary things. He is a true inspiration, but he doesn’t know that he’s an inspiration.”

FROM A CAPTION TO A BOOK When I filed that initial report to my editor at LIFE in the summer of ’89, it was a rough collection of notes and quotes from Chris. But I had so much good material, I had no idea how my editor would reduce it all to a two-sentence photo caption. It turned out that he couldn’t. The next morning, my phone rang early. It was my editor. He had read my notes and could not believe that the quotes were from a person with Down syndrome. He sent me back to the set for another day. And another. For the next several weeks, I hung out with Chris and his father in their temporary Burbank home—they’re die-hard New Yorkers—and at the studio. ABILITY 25


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It was fascinating to watch hardened show business veterans adapt the show to accommodate Chris’ needs. People with Down syndrome have some diminished intellectual capacity, although early education and stimulation have gone a good distance towards closing that gap. Still, they shortened Chris’ hours as well as his dialogue, and allowed for the fact that there were tasks he couldn’t do, such as tie a slip knot, because of reduced motor skills. The crew improvised by shooting close-ups of someone else’s hands tying a slip knot—and life went on. People with Down syndrome, like Chris, may have weakened immune systems and heart abnormalities. Once shunned and denied medical care and even vaccinations, they used to have vastly diminished longevity. But today most people with Down syndrome are expected to live out full, active lives. With his persistence and unwavering determination, it’s no fluke that Chris became the first actor with his condition to play a regular role in a prime-time series. On camera, he sparkled. Like a pro, he was able to act out the sometimes wrenching emotions demanded of his character. More than once I heard, “He’s magical. There is something in his eyes that draws you in and makes you care.” Audiences seemed to agree: The pilot episode was a hit, rated in the top 10 that week. Life Goes On became especially beloved by families and rocketed to No. 1 among pre-teens and children. Overall, it drew greater audiences than any show ABC had put in the Sundaynight slot for years. That November, what started as a photo caption evolved into an eightpage LIFE magazine story—with Chris beaming out from the cover, wrapped in a hug with co-star Patti LuPone. About a year later, Doubleday hired me to expand that story into a nonfiction book titled A Special Kind of Hero. It landed on a few bestseller lists and was selected as a top book of the 1991 by Library Journal. It is still available on bn.com, Barnes and Noble’s website. Chris tells his story within five chapters spread throughout the book. For the other 11 chapters, I interviewed more than 200 people, including friends, family, cast, crew and writers from the show. I also talked with experts on genetics, education, job training and other issues important to those with Down syndrome.

SEEING BEYOND OBSTACLES So much has changed since 1965, when Chris’ mother Marian was advised by her doctor to put her infant into an institution. That same year, a renowned minister wrote in The Atlantic Monthly that all infants born with what was then called “mongolism” should be immediately euthanized. He argued that “these people” would have no quality of life, and were only a burden to their families. How wrong Chris and others have proven him. When he determined he wanted to become an actor, Chris took lessons at every opportunity, and did what he could to learn about Top down: Audiences are like fishes: Chris learns how to reel ‘em in; bringing the noise, bringing the funk; rocking out with Joe and John DeMasi in the Chris Burke Band; on the Life Goes On set; putting up his dukes with former heavyweight champion and grillionaire George Foreman. 26

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his profession. His attitude is summed up in one of his favorite sayings: “Obstacles are what you see when you take your eyes off the goal.” Chris is the son of Frank, a retired police officer, and Marian, a retired executive. Before he was born, older siblings Ellen, Anne and J.R., had modeled and acted in minor roles. From the start, Chris’ parents and siblings encouraged him in all his goals except one—acting. The TV business, they knew, could be harsh and disappointing, even for the most talented and qualified actors. During Chris’s childhood, his family was far more concerned about his basic education. From an early age, he enjoyed pre-school at New York’s Kennedy Child Study Center. But as he got older, his family—not unlike the one on the show—was dismayed at the poor quality of the “special” education their local school system offered. They opted out and chose instead private, Catholic-run boarding schools, which were also on the East Coast. Chris’ teachers from those years remember the way he talked of his dream to become an actor. He wanted to make an impact, he told them repeatedly. He wanted to show the world what someone with Down syndrome could do. At 14, he asked a teacher to help him with a movie script he was writing. As a young adult, he took more acting classes, as well as courses in filmmaking and comedy improvisation at the Young Adult Institute, two bus rides from his New York home. He spent his allowance on head shots, which he sent to producers and agents.

BREAKING IN Chris had an encyclopedic knowledge of movies and television shows, and he could recollect names of actors with only minor roles in his favorite shows. He’d mail admiring notes to them. Then one day, his world changed when he tuned in to The Fall Guy, a prime-time TV series starring Lee Majors. There, on screen, was a boy with Down syndrome—Jason Kingsley, the 10-year-old son of Emily Perl Kingsley, an award-wininng writer for Sesame Street. Jason was a regular character on Sesame Street in his childhood years and also played himself on the NBC drama This is My Son. Chris wrote Emily a note, telling her that he, like her son, had Down syndrome, and that he enjoyed watching Jason on the The Fall Guy. Emily was moved and wrote back, in what went on to become a friendly correspondence. It was a difficult time for the Burke family, who worried about their loved one’s future. Even in the vast metropolis of New York City, it was difficult for Chris to find even a part-time job. He volunteered at a school

for children with disabilities where his niece went. In time, he became the elevator operator there. The Burkes were thrilled that he had a salary and benefits, working in a loving environment in which his abilities—not his disability—were noticed and appreciated. Then Emily Perl Kingsley recommended Chris for a role in a TV pilot titled Desperate. Chris won the part, and he and his father spent weeks in Key West, where the pilot was filmed. After it was over, Chris returned to his day job running the school elevator. Though Desperate was not picked up for a series, ABC executives loved the way Chris lit up the screen. They immediately hired the pilot’s writer, Michael Braverman, to create a family drama that would surround Chris with a talented ensemble.

BREAKING OUT During his four years on Life Goes On, Chris was nominated for a Golden Globe for best supporting actor, and won other awards as well. He remains an active member of the Screen Actors Guild, yet these days does not do much acting. During and after the series’ run, he appeared in guest roles on television shows including ER, Touched by an Angel and The Promised Land, as well as in the TV movie Jonathan: The Boy Nobody Wanted. His most recent role was in 2003, when he played a janitor in the Julia Roberts’ film Mona Lisa Smile. Today, Chris still keeps in touch with his favorite cast and crew members, including Life costar Kellie Martin. In the future, Chris is determined to work behind the camera. “I’d like to be a project consultant, to continue to promote awareness of Down syndrome in television shows. I’d like to work with producers and writers and give them script ideas.” When Life Goes On ended its run, Chris joked with typical aplomb: “Life Goes Off.” Frank and Marian thought it might be the end of Chris’ performing career. To their surprise, he moved on to a new passion—music. In 1993, their youngest recorded his first album with childhood friends and camp counselors Joe and John DeMasi, who are twins. Three more albums followed, all available through Chris’s website. Their schedule can be jam-packed. This March, for example, the trio traveled from Ohio to Idaho, and from Georgia to New York for eight performances. They often play at schools, outdoor festivals and meetings for Down syndrome-related conferences. Though Chris is not a trained singer, the songs often have him singing, rap-style, to a catchy beat.

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“We’ll perform,” says Chris, “then we teach about goals and how to reach for your dreams. We get the audience involved. We try to teach them what to do in the future. We try to encourage them.”

FAMILY MATTERS “I like being on the road with Joe and John,” Chris says. “But I am so anxious to get back home. It’s not easy being on the road. I like to entertain, but I’m really close to my parents and I miss them.” He also stays close to his three older siblings and his 10 nieces and nephews, including Dewey Burke, who played college basketball this year at the University of North Carolina. Marian says she and Chris’s father, now both in their 80s, often talk about the future “after the two of us take off for the big beyond.” “It is a concern for us,” she says. “We come up with different solutions every week. We try to discuss it with Chris, and he finds it so hard.” “It is naturally the biggest concern of the parent of any young person with a disability: What happens after we’re gone? We do have a wealth of options. His two sisters and his brother, his nieces and nephews—they all love him dearly. We know he’ll never be left on his own.” Not by a long shot. Where Chris goes, a crowd seems to follow. When he’s not on the road performing for fans, he spends several days a week at the National Down Syndrome Society in New York City, where he is a spokesperson. “It keeps me occupied,” he says. “I’ll help send mail, answer the door for the UPS men. Whatever they need.” He spends almost as much time roaming around Manhattan, taking buses or walking to Blockbuster, Best Buy and other stores, where he keeps up with the latest music and movies. Chris laughs and admits his collection has grown quite large. Recently, he was waiting to nab a new favorite movie, Dreamgirls, on DVD so he could watch it again. Chris himself is out on DVD: In 2006, his series Life Goes On was released, making four great years of life with Chris now available to a whole new generation of fans. by JoBeth McDaniel National Down Syndrome Society www.ndss.com Buddy Walk www.buddywalk.org Chris Burke’s Official website www.chrisburke.org

Top down: Chris with his mom and dad, Marian and Frank Burke; with actor Gary Sinise (left) and director Ron Howard; with Senator Bob Dole; with Eunice Kennedy Shriver; and with Tracy Ullman on the Panasonic jumbotron in Times Square, New York City, . 28

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Omentum Transfer e OPERATION C

atherine Cain watched her grandmother die from Alzheimer’s disease. “Her death was awful, pitiful and terrible,” she recalls.

When her mother, Ruby Palmer, began to show early signs of dementia: becoming confused, repeating herself and getting lost, Catherine and her father were determined to be proactive about treatment. They got her the latest medication, a drug called Aricept (Eisai/Pfizer). “For three months that helped,” says Catherine, “then she started to go downhill.” That’s when she went online to search for innovative procedures, which turned up an operation that she’d never heard of called “omentum transfer.” According to the information she found, a doctor named Harry Goldsmith often performed it. He’s a professor of surgery at the Nevada University School of Medicine. Goldsmith had spent years researching the omentum, a protective tissue that hangs like an apron over the intestines and lower abdominal area. Rich in blood vessels, it also stimulates the growth of new blood vessels, when grafted onto an area such as the brain or spinal cord. It’s due to a severe lack of blood flow that a critical mass of cells die in the areas of Alzheimer’s patients’ brains that deal with cognition and memory. With an omentum transfer to that part of the body, blood flow can not only improve, but also provide vital oxygen and nutrients to nerve cells. Still, any surgery has its risks, and Catherine worried how her mother would fare. “It was scary, deciding on an omentum transfer,” she recalls. “But we felt it was our only hope. Professor Goldsmith told us he had operated on 23 people with Alzheimer’s, 17 of whom had shown improvement, and the rest of whom had shown significant reversal of their symptoms. My mother was still in the early stages, so we felt she had a chance.” The operation requires both a general surgeon and a neurosurgeon. Goldsmith prepares the omentum for transer, but relies on a neurosurgeon, such as Dr. Siegfried Vogel 30

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of St. Gertrude’s Hospital in West Berlin, to attach it to a particular area of the brain or spinal cord. During surgery, Goldsmith partially separates the omentum from the intestines, leaving the main blood supply intact. That tissue is then surgically tailored and stretched into a long pedicle, and brought subcutaneously up under the chest wall and neck to the brain. That’s when Vogel removes the flap of omentum tissue and stitches an artery and vein from the omentum to the temple artery and vein in the brain. He describes the operation, with disarming understatement, as “not too easy.” Vogel first introduced Goldsmith to the procedure in 1986 at a conference in Cuba. Omentum transfer to the brain was first done on chronic, post-stroke patients 25 years ago. The results were generally favorable, and specialized brain scans demonstrated that omental blood vessels grew and penetrated deeply into the underlying brain tissue. Omentum transfers to the spinal cord soon followed, in an attempt to restore function to those who are paralyzed. Goldsmith had some success in this area, and published MRI scans demonstrating nerve growth after surgery. But an unfavorable study written in 1996 made the operation controversial. As a result, it’s performed less frequently in America. “One of the problems,” Goldsmith says, “is that for surgery on chronic spinal-cord injury to be effective, it must be followed by aggressive and prolonged physiotherapy.” As it is used for different neurological conditions, surgeons are learning more about the properties of the omentum. A five-year, follow-up study on those who had undergone its transfer to the brain, showed that it continued to deliver an increasingly large volume of blood, despite the aging process. The omentum also contains plentiful neurotransmitters such as acetylcholine, which are often at dangerously low levels in Alzheimer’s patients. Vogel describes omentum transfer as a “general help.” Unlike stem-cell transplants, which are particularized for a certain disease, omentum transfer may be “a presentday treatment until future pharmaceutical or genetic forms of treatment are developed,” says Goldsmith. Anecdotal evidence shows this procedure improves neurological condition, sometimes dramatically, when all other means have been exhausted. “The first time I performed this operation was in 1980 on a six-year-old child with epilepsy,” Vogel recalls. Each day she had 10 or 12 seizures and was unable to walk or speak. We discovered that the whole left side of her brain had disturbances to the blood supply. We could think of nothing but this omentum transfer to improve it. After the operation, we waited three weeks, and each day she had fewer seizures, until she was able to stand and walk. Within the year she could speak. With continued medication she had no seizures and was able to attend school normally.” Three months after her own mother’s operation, Catherine reports “small differences.” “She has started to read again, and when I take her shopping, she can get out her credit card, swipe it in the machine and sign it. She could not do that prior to surgery. She no longer asks the same question over and over, and she remembers small things, like my son going back to college. She is not taking any medication and is stable, allowing her more time with my Dad.” Dr. Siegfried Vogel ABILITY 31


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C

an’t remember what you ate for breakfast this morning, or where you put your car keys? Often blank on your mother-in-law’s name? Not to worry. These are probably not signs of Alzheimer’s disease. Yet aging Baby Boomers—those born between 1946 and 1964—do face a future in which they will experience a natural deterioration in their ability to recollect the past. But the game’s not over yet. Researchers such as Dr. Gary Small at the University of California at Los Angeles (UCLA) have evidence that a few simple life changes may help. ABILITY Magazine’s editor-in-chief Chet Cooper and ABILITY’s health editor E. Thomas Chappell, MD, met with Dr. Small recently. As they entered his waiting room on UCLA’s medical campus, they spied his hot-selling memory enhancer Brain Games, now widely available in stores, on a table. On the drive over the two interviewers had passed the time through LA traffic listening to Dr. Small’s The Healthy Brain Kit audio CD, made in collaboration with noted natural health guru Andrew Weil, MD. On the CD, Dr. Small demonstrates the memory trick for name and face association with the following example: listeners could remember his name by associating Gary with the city of Gary, Indiana, and then Small with a mental image of that state shrinking. So Cooper and Chappell jokingly asked for “Dr. Indiana Shrinking,” and then settled in for a conversation about aging and memory. Chet Cooper: What can one do to improve memory? Dr. Gary Small: Preliminary research suggests that rather simple lifestyle changes, such as eating five small meals a day to maintain levels of blood sugar, as well as regularly using relaxation techniques, may enhance memory.

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Dr. Tom Chappell: What are some ways you’ve been able to show this scientifically? Small: Well, one way is to look for improvement on a memory-skills test, for example. We test people before they make a lifestyle change and then test them again several weeks after. Cooper: We noticed your office is next to an imaging center. What types of imaging are you using? Small: Imaging refers to various diagnostic scans of the brain. These scans might be performed with a PET (Positron Emission Tomography) scanner or a special MRI (Magnetic Resonance Imaging) scanner. Cooper: What role does this technology play in your research? Small: These special types of brain scans show increases and decreases in activity in different areas of the brain. After just weeks of certain lifestyle changes, our research indicates improved efficiency in those areas of the brain known to control memory. Chappell: What else can you do for patients using this type of imaging? Small: We just published a paper in the New England Journal of Medicine on a brain-scan technology we invented that helps us see changes in the brains of patients with Alzheimer’s. Chappell: If there is currently no cure for Alzheimer’s, why is it important to be able to show it on a diagnostic image? Small: Research on Alzheimer’s has come a long way in recent years. It’s not hard to imagine potential cures on the horizon. The way we’ve diagnosed the disease up to now has been by noting characteristic symptoms in a patient, such as atypical behavior and memory loss. One might imagine that this is not a highly reliable way to be certain of the diagnosis. But now we can we add to that an imaging technology—in this case a brain scan—which can give us more reliable information if a large group of patients diagnosed with Alzheimer’s are also found to have decreased function in a certain area of the brain. We could also use this technology to scan new patients, and if they’re found to have decreased function in this same brain area, it would more strongly suggest that they truly do have Alzheimer’s, making it easier to confirm a diagnosis. Similarly, brain imaging can help us navigate the challenges of understanding brain function as it relates to memory. For example, if a new drug is being tested on Alzheimer’s patients and their symptoms improve, it would also be helpful to see signs of improved function on their brain scans.

Gary and Gigi Small recommend several little meals daily to help promote healthy memory.

Chappell: One of the interesting things about your research is that you often look at memory in people who have not yet developed what doctors would consider diagnosable memory problems. What else can you tell us about the research you recently published in The New England Journal of Medicine? Small: We did a study where we gave people memory tasks while they were having their brain scans. These were people who are aging Baby Boomers with normal memory performance. We found that if they carried a gene called APOE-4—which is associated with increased risk for Alzheimer’s—their brains had to work harder to do the same memory task compared to a similar person without the gene. Not only that, but the people whose brains worked harder had more memory problems a few years later, even if they did not develop Alzheimer’s. It’s really cutting-edge, high-tech research... So, that’s my day job. (laughs) Cooper: And what can you tell us about your moonlighting gigs, like your work on The Healthy Brain Kit and Brain Games? Small: I think those projects get me more involved in reaching out to a larger audience, trying to translate science into a language that is more understandable to everybody. It’s also somewhat of a family affair—my wife has been very helpful with her ability as a professional writer. I think I’m a better writer for having worked with her, and she’s a better scientist. ABILITY 33


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helps memory, then physical conditioning and stress reduction may improve memory by enhancing the immune system. Cooper: Do you have a private practice in psychiatry as well? Small: I’m full-time faculty here at UCLA, so I do see some patients. But most of my time is devoted to research, teaching and administration. Chappell: Do you have several grants to support your research? Small: Lots of grants. We have a lot of support from the National Center on Aging, and we have foundations that support us, as well as private donors. We also do fundraising to make it all happen. Chappell: What’s your hottest research right now?

Stimulating your memory can actually be fun with Brain Games and other playful products

Chappell: So how do you turn a scientific theory into a product that will be as catchy and marketable as Brain Games? Small: Brain Games was actually someone else’s idea based on our work. They wanted to create a hand-held game that not only helps people improve their memories, but is also fun to play. You can build up your memory skills and train without straining your brain, and you can set the level of difficulty where you want it. Cooper: How are the sales going? Small: Pretty well. The game just came out last month, and people like it. It’s supposed to be for Baby Boomers, but I can’t get it away from my 12-year-old son. Brain Games II is under development now, and I’m excited about that because it’s not only going to have the mental aerobics of Brain Games, but also tips about stress reduction and diet. It should help people with the 14-day program, so that they can really jump-start their longevity and brain health. Chappell: Brain exercise, physical exercise, diet, stress reduction—it seems that improving one’s memory is multi-faceted. What other factors might affect memory? Small: We just submitted a grant application to the NIH (National Institutes of Health) to study whether memory training plus Tai Chi has a better impact on memory scores and brain function than just memory training alone. We’re also interested in how inflammation and immune function relate to memory. We know that cardiovascular conditioning and stress reduction will boost the immune system. If boosting the immune system also 34

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Small: Currently our brain-scan technology is extremely hot. It’s got worldwide recognition because ours is the only technology like it in the world. As a matter of fact, I was recently invited to go to Congress to talk with staffers and legislators about our research. They occasionally bring in scientists to brief them on important topics. Cooper: Is that important for getting research funding from the government? Small: There’s a lot of work that goes into educating policymakers and lawmakers. The NIH is very interested in influencing public policy to improve funding of scientific research. So my efforts are just part of that endeavor to educate. The NIH is happy when an article, such as our recent one, appears in a high-profile publication like The New England Journal of Medicine. Stories in there often get picked up by mainstream media, and senators and congressmen read them in USA Today and The Wall Street Journal, which gets their attention. Cooper: Dr. Chappell, how does this special brain scan for Alzheimer’s affect your work as a neurosurgeon? Chappell: Well, it lets us neurosurgeons off the hook. For many years the medical community talked about actually performing biopsies of patients’ brains to find out if they had Alzheimer’s. Most of us are adamantly against that. The procedure has risks and there is no cure for the disease. Why risk getting a biopsy diagnosis for something you can’t reverse anyway? But the landscape is now changing—the diagnosis can be made without invasive techniques, a brain scan will confirm it, and soon there may be treatment! Small: If we can push this forward, what will happen ultimately is you will deal with your brain the way you deal with your cholesterol: You will get a brain check-up. If


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Brain scans are helping researches learn more about memory

you have the disease or the possibility of developing it, you will get your vaccine or your medicine to stave off the problem. Pharmaceutical and biotech companies currently are testing new drugs and vaccines that can prevent or remove the abnormal proteins that cause Alzheimer’s. We can diagnose these same proteins with our special brain scans, so they would provide a logical means for monitoring.

time somebody has Alzheimer’s, they’re too far down the road. We may have to start the treatment in people who are just beginning to show signs of the disease. I think it’s easier to protect a healthy brain than to repair a sick one.

Chappell: Do you have some federally funded grants for your imaging work, too?

Small: We found in that study that we could see the abnormal protein plaques in people’s brains before they got full-blown Alzheimer’s. These were patients with mild forms of impairment, and you could see an obvious signal on their brain scans if they were going to go on to develop Alzheimer’s disease. So I have tremendous optimism that we have the technology, if we can focus our efforts and get enough funding. We’ve already got the talent and the ideas.

Small: Yes. Last year we got a Program Project Grant from the NIH, so we have several projects going. We are doing experiments in which we use a small PET scanner made for experimental animals like rats. The experiments involve giving the Alzheimer’s gene to them, which gives them the disease. We can then use our chemical marker for Alzheimer’s that shows up on the brain scans, and follow up by giving the rats test drugs that we hope will treat the disease. This way we can see if there are changes in the rats’ brains by using the scanner instead of killing the rats and then looking at their brains under a microscope. Chappell: So this technique may also make research on humans safer and easier as well? Small: Yes. In fact we are not just studying experimental drugs. We can study drugs that have been on the market for years—drugs used for other physical illnesses, such as anti-inflammatory drugs, that may protect the brain as well. We did some studies where we put the abnormal protein plaques that cause Alzheimer’s in a test tube. Then we added drugs like naproxen (Aleve) and ibuprofen (Motrin), and they actually dissolved the plaques in the test tube. So we’re looking at these drugs as potential treatments for Alzheimer’s. So far the studies have been negative, but that might be because of the way the studies are designed. It may also be that by the

Chappell: Is this the type of approach your study in the New England Journal of Medicine suggests?

Chappell: Lots of interesting research is now being done with a relatively new kind of MRI called functional MRI (fMRI); unlike regular MRI scans that only show brain structure, fMRIs, somewhat similar to PET scans, show brain activity, capturing even moment-to-moment changes. Are you using fMRI in your studies of Alzheimer’s? Small: We do functional MRI (fMRI), the new kind of PET scan and the traditional PET. We do multiple scans on people, multiple tests, including genetic tests, so we can get a comprehensive profile. With fMRI, it’s exciting. We’re developing new kinds of ways of stressing the brain, or activating the different brain circuits. That’s really fun. Imagine the paradigms you can come up with... for example, we did a study where we found that people who had more educational achievement had a different profile on their PET scan than those with less achievement. So using a scan, we could estimate the number of years of college they’d had. Just think—in the future, we may be able to do a scan and say, “Hey, ABILITY 35


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people in reasoning skills, and you can show that if they continue to use those skills, they’ll do better at them. But they won’t necessarily do better with other mental skills you haven’t trained, like verbal memory or visualspatial memory. So there tends to be some specificity. What I like to do with The Healthy Brain Kit and my other materials is to give people strategies so they can generalize the mental skills they develop. For example, they might ask, “So what if I can learn a list of 10 unrelated words? How’s that going to help me?” In my trainings, I’ll explain, “Well, here’s how you can apply that to those five errands you have to do today that you don’t have time to write down.” Or, “Here’s how you can use that for remembering names and faces, so you don’t have to get embarrassed when you see your mother-inlaw and can’t remember her name.” “Dr. Indiana Shrinking” (above) often teams up with Dr. Andrew Weil to promote health

you didn’t really get the A in that course that you claimed you got!”

Chappell: I actually didn’t know until listening to your CD that people with higher education were at reduced risk for Alzheimer’s, or at least have a lower incidence of the disease.

The thing about memory techniques, like the name-andface association technique we discussed earlier, is that the memory cues that will work for any given individual are very personal. Most people don’t get this immediately. So when I teach them these techniques, I tell them, “Just use the first thing that comes to mind. If there is something meaningful in your life that helps you remember a name, a person or a word, that’s great. Other people don’t have to remember it that way.”

Small: We don’t know the explanation for that. It could be the Brain Games idea—you’re exercising your brain, and that’s protecting it. Or it could be that people who have good brain genes get on the college track.

Cooper: When you’re writing books or developing products for the general public, what helps you determine how to best get your message across to the average person?

Cooper: Did you have people actually doing the Brain Games during the PET scan?

Small: I think, “How do I present this? What would be a snappy way to say it?” The techniques I’m talking about have been discussed in many different forums. I think we have an edge in presenting them because we simplify the ideas and make them easy for people to understand and use.

(laughter)

Small: That’s a good question. That’s actually a study I was thinking of doing, but we haven’t gotten around to it. It’s a little tricky to do those studies in the MRI machine, because when people are in there they can’t really see the game, and you also don’t want them to be moving a lot. As a result, we have to create certain devices to simplify the movement and then present them to the subject with a computer screen that simulates the cognitive activity. So we’re not doing that game per se, but the next best thing. The study we could more easily do with that game—and really we sort of already did the study to some extent— is to tell people, “Play Brain Games for an hour a day for a couple of weeks, and we’ll do scans before and after to see how it changes your brain.” And that study would probably show something. Cooper: You mentioned something in your CD about brain effects for chess players and chess games? Small: Yes, we know from many studies that you can train the brain for specific cognitive tasks. You can train 36

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I first started thinking about this in medical school when I was trying to remember a lot of material myself. I read a memory book with all these techniques, and I thought, “If I could really learn these, maybe I could get medical school down to one word!” Of course, I’d probably forget that word and have to start over again. (laughs) But all memory techniques are just a process for organizing ideas. That’s really what we’re talking about—simplifying the information, creating a mental template so it works for you, and putting it into some context so it makes sense. Cooper: Were you expecting all the popular recognition you’ve received? For instance, what was your thought when you first saw Brain Games in the store? Small: (laughs) I was amused... it tickled me.


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The ABILITY House program, in partnership with Habitat for Humanity and ABILITY Magazine, outreaches to volunteers with disabilities to help build accessible homes for low income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries, please contact us for more information. info@abilityawareness.org www.abilityawareness.org Cooper: How many of the games are you directly responsible for? Or did the game company produce them by extrapolating from your principles? Small: The process involves talking with a company that’s interested in what we do. Then we negotiate the contract of what the game should contain, and next meet with the programmers. The Dallas-based company we worked with, Radica Games, is very clever. I told them, “Look, here are the issues, here are my three books, here’s what I think ought to be in these games, and here’s what I’d like you to do.” There were a lot of things I wanted in the product, but they wanted to get something out quickly, so there were inevitable compromises. For the first game out of the box, I think they did a pretty good job. It’s a lot of fun, and I think the next one is going to be even better. Chappell: So they have gamers write the games? Small: Oh, yeah. When we did it, I went to a large techgame convention called the E3 to get a sense of the industry, and it was a hoot. That’s a whole world that I was unfamiliar with. Chappell: Your kids don’t play electronic games? Small: Well, that’s interesting question, because the book that my wife Gigi and I are working on right now is about how digital technology affects the brain and behavior. We actually monitor and try to limit the amount of time our kids use computers and games.

My son is way into this virtual gaming thing. He’s got some World of Warcraft game that he loves. My daughter—forget it! For her, it’s MySpace. So we try to monitor these types of activities and set reasonable boundaries. It’s a big problem, because a lot of our kids’ social activities now are being transferred to this electronic digital technology. The perplexity lies in the fact that our brains are malleable, and they’re constantly responding to stimuli. The way the brain does this is by growth of dendrites [small extensions of brain cells to other brain cells], sprouting of neurons [brain cells], changes in neurotransmitters [the chemicals that brain cells use to communicate] and alterations in synapses [the actual connections between brain cells]… So the brain is continually re-shaping itself, and the neural circuitry is sort of a moving target. We see it in our PET-scan studies. You can train the brain and strengthen the circuits, but for every circuit you strengthen, you weaken others. So the concern I have is that too much virtual technology, Internet and email and too little face-to-face interaction is not good for our brains. There have been studies showing that increased hours of TV time raise the risk for Attention Deficit Hyperactivity Disorder (ADHD) in kids at young ages. So there’s lots of evidence, especially for children, whose brains are still being shaped, that what they are exposed to in their day-to-day environment is critical. We’ve got to teach them face-to-face skills, how to have empathy. That’s really what we’re writing about.

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would have been rude, we thought, to have canceled on this last leg. That morning the military wanted to take us to an Iraqi water-treatment plant, which provided fresh water for the town. Insurgents had attacked the facility while it was under U.S. protection and now it was in the hands of the Iraqi soldiers, who were doing a good job of securing it. A huge hole had been blasted through the center of the plant by a rocket-propelled grenade and the station grounds were muddy. “Man, I hate driving over this sh#*. You never know what’s underneath there,” the driver of our Humvee muttered under his breath. We knew he meant improvised explosive devices or IEDs. The insurgents had been clever about placing these bombs, and the number of IED blasts had ratcheted up in the past few months. The men had good reason to be jittery. I was too. All told, we had traveled only three miles or so when there was a giant explosion, a deafening, horrific blast that rocked the tank. Hidden behind some trees, a band of Iraqi insurgents had detonated a crude roadside bomb with a remote-controlled device. The IED was a 155millimeter shell, one of the biggest artillery shells available. This was a well-planned complex attack. The bomb was set off to the left of the roadway, about three to five yards from the tank. Hundreds of rocks and stones, which had been packed around the shell in the dirt to magnify the damage, shot upward with the force of bullets. The explosion blew up and under the tank, powerfully showering the side of the vehicle, the angle of the blast effectively saving our lives as most of the shrapnel flew over our heads. I took a direct hit to the left side of my head and upper body. More than a hundred little rocks and countless fragments of black dirt were blasted into my face, peppered around my eyes, tattooed onto the bridge of my nose and ear, and shot into my jaw and under the helmet. One marble-sized rock sheared off the bottom of my jawbone, cracked two teeth, and entered the soft flesh of my neck. A second marble-sized rock ripped into my cheek and up into my sinus, coming to rest up against the eggshell-thin bone of the eye socket. Another rock tore into the chin strap of my helmet, blowing it off my head and into the sand several yards away. The force of the blast was so strong that it crushed my skull bone over the left temporal lobe of my brain. Small shards of my cranium were driven into the outer surface of my brain, and the force was so great that my left eyeball was slightly displaced in the socket. Three large rocks and dozens of smaller ones shot under my flak jacket in the back by the armhole, slicing into the flesh and cartilage of my scapula like tiny, dulled knives, coming to rest just a millimeter from my chest wall, heart, and lungs.

Doug was still filming as his skull absorbed the concussive blast from the front, but his helmet stayed on. The force of a giant rock slamming into his helmet shattered his skull. Only a few rocks hit Doug, though, as the force of the blast slammed him onto the top of the tank on his back. In shock from the concussion, he could not move and lay staring up at the blue cloudless sky. The Iraqi soldier riding at the front of the tank had one of his hands blown off. Below the hatch, Magnus had been holding Doug’s legs as he filmed. The blast caused Magnus to fall back and lose his grip. Vinnie and Magnus looked at each other for a split second and screamed. Doug’s camera fell down into the hatch and instantly Vinnie looked up and saw my body sway and crumple down into the tank in a kind of macabre slow motion, blood streaming down my face. As I fell into the vehicle, my helmetless head and the back of my neck ricocheted off the hard metal on the sides of the hatch like a child’s rubber ball. For more than a month I would be completely unaware of anything that was happening around me. My mind would journey to a place that to this day I cannot describe or even remember. LEE WESTCHESTER COUNTY, NEW YORK, JANUARY 23, 2006 What would you do if someone told you that the next moment would be the last time you would hold or hug or converse with your husband for over a month, that he would lie for five weeks in a comatose state, clinging to life? How would you act if you knew your husband would spend the next year and beyond recovering from a traumatic brain injury, dealt by a roadside bomb powerful enough to blow open his skull? What would I have changed about that moment, that morning, if I had known my family would be torched by a wartime explosion? LEE BETHESDA NAVAL HOSPITAL, MARCH 9, 2006 Driving to the hospital on the morning of the third day after Bob’s awakening, my cell phone rang. It was an unfamiliar area code, and out of curiosity and given the early hour, I answered it. “Hi, there,” said a man’s voice. “Hi,” I said, tentatively. My new life had made me wary of almost everyone. “Who is this?” “It’s Bob.” He sounded ticked off that I hadn’t recognized his voice. “Oh, sweetie!” I said, with a mix of incredulity and relief. “I—uh, I just didn’t expect you to call me. It’s been so long since I picked up the phone and it was you.” “Well, I hope I’m not bothering you,” he said, annoyed, completely missing the importance of the moment. ABILITY 39


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The best therapy in-between surgeries

“Let’s take it in the bedroom,” I joked to our makeshift audience. With every brain injury there is always payback for the great days and the surges of energy where the patient pushes it. Especially early on, one day of feeling great and the resulting frenetic activity means the next day will probably feel like a setback. So it was for Bob the following morning. He was tired and nauseated, but miraculously his speech continued to return.

“Where are you? When are you coming?” “I’m on my way,” I told him. “I’ll be there in four minutes.” “Well, I was just looking for the...well, I’m trying to cut . . .” and then he trailed off, unable to think of the word. The amazing thing was that I knew he was looking for nail clippers. I could understand how his mind was working as he sputtered out words that sounded roughly like toe, walk, and foot. “Are you looking for the nail clippers?” I asked patiently, in a shockingly mommy-ish voice. I could see this new job was going to require a different kind of patience, as had pushing Nora’s hearing aids back in her ears, over and over again, when she was first diagnosed with hearing loss. His need was sobering. “Yes,” he said, relieved. “Nob... shooters. Where are they?” When I walked into the hospital a few minutes later, the doctors told me Bob was running laps around the hall. “What?” I said. I looked up and there was Bob, in his goofy white plastic climbing helmet and with a nurse by his side, slowly jogging and simulating lacrosse moves, unaided, down the long corridor. When he finally saw me, he immediately stopped and stood, showing off and put one foot on the inside of his other leg with his palms touching in front of his face, balancing in a yoga-tree pose. “Hey,” I said slowly, already hating the white plastic helmet that we would be living with, possibly for months, until they replaced the skull bone. “Sweetie!” he said, and he put his arms out and began to run toward me in his too-short T-shirt and cutoff hospital pants like a man with a new lease on life in one of those horrible erectile dysfunction ads. The entire nursing floor and the doctors doing rounds all laughed as we hugged in an over-exaggerated, B-movie clinch. 40

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During one of his first cognitive tests, the reality of what Bob had lost was driven home to me. The neurologist held up cards with pictures of objects, and as I watched I realized that Bob could not come up with the words for bird or tree. For broom, for example, he would say, “It sweeps stuff on the floor.” But despite the elementary nature of the tests, the neurologist, Dr. Degraba, was obviously pleased. He asked Bob to copy two intersecting pentagons, and Bob did this almost perfectly. Then he scribbled something inside each of the pentagons. One held the word love, and in the other pentagon he’d written tempest. Dr. Degraba studied Bob’s scribble for a bit and seemed to dismiss it. “I’m not sure what this is all about,” he said, showing me the words when he reviewed Bob’s results. I knew instantly. Those pentagons represented the two halves of his brain. One contained the love he felt for his family and the gratitude he had for being alive; the other side was the tempest, the horrible raging fear and disorientation that lived in his brain right now, as he tried to make sense of his new world. “It would have been better for you if I had died,” he said to me, later that day. “I am so sorry.” I tried hard to buoy his spirits. Bob was keenly aware of his deficits, an uncommon quality in most newly brain-injured patients. Like so many things about Bob, his self-awareness was remarkably intact. Most of the time his sense of humor was in evidence, but I knew he was using it like a mask. When that mask slipped, on those rare occasions where he was sad or just plain exhausted, he would allow himself to feel the fear and terror of what had happened to him and what he did not remember. LEE WESTCHESTER COUNTY, NEW YORK, MARCH 19, 2006 Bob was in capable new hands at the rehab facility in New York City, and he was now only a 40-minute car ride from our home. We had made the transition. Another change, one of so many. Dr. Costantino and Dr. Sen came by to see Bob in his new hospital room at Columbia-Presbyterian the next morning. They began to talk to us about the next surgery, the big one. This would be the cranioplasty operation to replace Bob’s skull, and they had decided on May 19. Bob’s spirits fell. Another nine weeks of


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living with the hated helmet and with pain and disorientation. But they had to be sure Bob was well past the risk of any infection from the pieces of dirt and rock shrapnel that had been embedded in his scalp.

even though he hadn’t been wearing blast glasses. Later, Bob would joke that he had his deep-set eyes to thank; they receded so far in his head, the eyeball had been spared.

At that time the surgeons would do some more work on smoothing the jagged scars on Bob’s face. They would try to make his tracheotomy scar look better and remove the many dozens of tiny rocks that still peppered the left side of his face. Although the surgery would take place in New York, Dr. Rocco Armonda from Bethesda Naval would be there as well. Once again, it would be the dream team in the operating room. The presence of these men would make me feel calm and in capable hands.

Now that Bob was awake we could also deal with the issue of his hearing. The audiologist found, amazingly, that he had lost only about twenty decibels. “Most of his hearing is there,” the doctor told me. The IED had exploded just feet from Bob in a flash of white light with what must have been the sound of an apocalypse. I remembered first seeing his ear, bloody and mangled, like a piece of pink cauliflower oozing fluid; surely, I’d thought, Bob would be deaf in his left ear at least. The doctor explained that there was a hole in the tympanic membrane; if it did not heal on its own, he would sew it up during the cranioplasty.

The army’s Walter Reed Hospital had already created a state-of-the-art model of Bob’s new acrylic skull plate from high-tech 3-D CT scans. A specially created bone epoxy, developed by Dr. Costantino, would fill in the seams where remaining skull met acrylic. The combination of these two procedures was brandnew. After Bob’s “joint venture” surgery, future military cranioplasties at Bethesda Naval Hospital would use this method. The ophthalmologist in Bethesda, and later in New York, was amazed at how Bob’s left eye had been spared. It was another miracle. Small rocks were scattered all around the eye socket and in the upper and lower eyelids, but nothing had hit the eyeball itself,

After just three weeks, Bob had cycled through the inpatient phase of his recovery and was ready to come home. I was terrified. The medications, the constant fear he might fall and hit his head—these concerns had all been in the hands of nurses until this moment. Now Bob was going to be my responsibility. It felt like carrying an egg on a spoon. BOB COLUMBIA-PRESBYTERIAN MEDICAL CENTER, NEW YORK, MARCH 2006 Although I was still in pain and would often have to lean against walls and door frames for balance, there ABILITY 41


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Bob and Lee share a private moment

was a definite shift in my abilities. The biggest difference was that the constant pain was receding. In the beginning, at Bethesda, I had been able to sleep for only an hour or two at a time. Part of that was the initial excitement of being alive. I was thinking about so many things. But much of my discomfort was due to the ongoing pain in my head and back. It was hard to focus. Although I was often hard on myself and on the slow pace of my progress, I could see small changes. More words were coming, though I tired so easily it felt like failure sometimes. I had occupational, physical, speech and recreational therapy almost every day, and by dinner I found myself exhausted. Often I would have to nap to get through the day. Initially, Lee had accompanied me to some of my sessions, but increasingly I didn’t want her to see the plain truth of how little I could do. I was missing so many words. While I was learning to get around this in conversation, or rely on others to fill in the blanks, there was no going around things in therapy. As much as I loved and respected my therapists, they were not there to give me a break. It was their job to help me put it all 42

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back together, to teach me coping skills for my deficits. In the early days, the grueling nature of these sessions was like a cold shower. The therapists kept telling me that all the words were in my head somewhere; it was a matter of building the new neural connections that led to them. Much of it was time. The brain takes longer to heal than any other organ. I watched Lee’s face once while I was fumbling for the word lettuce in the therapy room. She looked scared and very small. She was exhausted and she had lost too much weight. Her broad swimmer’s shoulders hunched forward. I remember feeling how much I wanted to make this all right with her. Just then, I wanted so badly to come up with the word lettuce and I couldn’t. I was using every bit of energy I had to get through my own days. Just one day on the rehab floor in the hospital felt like a whole week in what had been my former life. LEE ST. LUKE’S-ROOSEVELT HOSPITAL CENTER, NEW YORK, MAY 19, 2006 After so many agonizing days, hour after hour of waiting and worrying, of watching Bob weak and in pain, the date for the cranioplasty surgery had finally arrived.


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Bob was nervous. This was the first surgery that he would be aware of after his injuries, and the thought of someone carving his head like a pumpkin made him incredibly anxious. More than four hours later, the surgery was a success. Dr. Costantino and Dr. Armonda had shaved the acrylic skull plate a little to make it more symmetrical and then molded the soft hydroxyapatite cement into the edges. It would fuse to the bone like real bone, filling in the ridges around the skull plate. It had taken a few tries to render it the way they wanted, but like a pair of Renaissance sculptors they were pleased with the symmetry that resulted. In the recovery room, Bob’s head was covered in bandages with a drain coming out, to collect the liquid draining off his scalp. After almost four months, Bob finally had a rounded head again. There would be one more operation later to fill in the left temple where the muscle was shattered and then reattached, but the doctors needed to wait to make sure he was past the risk of infection. Some of the black spots we had thought were rock turned out to be dirt, blasted into the skin around his cheek, nose, and eyes. It would be impossible to take these spots out surgically and they might never rise to the surface to expel themselves. This was of no concern to Bob. He refused any future surgeries just for aesthetics. “I’ve earned these scars,” he would joke. BOB WESTCHESTER COUNTY, NEW YORK, MAY 27, 2006 It was the heart of Memorial Day weekend, and the drain and tight bandages had just come off. I’d had a rough recovery from the surgery and there was a great deal of fluid building up under my scalp, which was uncomfortable and scared me. I hated the dreaded bandages; it took all the self-restraint that I had not to claw them off at night. Dr. Costantino explained that they were wound so tightly around my head to counter the fluid build up from the operation. But it felt like a cruel turban, and I was tired of the pain. Day by day, week by week, I crawled out of this phase of recovery and began to feel better. With my new head and no more helmet, I felt like a man let out of prison. I’d had daydreams of crushing the helmet with my car or smashing it with a hammer, but once the surgery was over I didn’t feel any anger or need for release. The helmet ended up in the basement as what I hoped would be a relic of this time in our lives. BOB DECEMBER 2006 With the help of intense cognitive rehabilitation, the healing powers of the human body, and the profound support of friends and family, I have come closer to my old self, little by little. But I will never be the same. No one can undergo a life-changing event and be the exact person they were before it happened. I am a more grateful

person now, on so many levels. I truly appreciate the depth of friendships and I’m thankful to have had this time to be more of a presence in my children’s lives. I’ve also had to relearn how to do certain things I once took for granted. A big part of recovering from a brain injury is to adopt different ways of doing the same thing—“coping strategies” to attack the same problem in a new way. I write down far more things than I used to, I’m better at keeping a schedule, and I’m learning my limits when it comes to fatigue. After I woke up from my comalike state, I would search for a word or memory, and it would evaporate before me. When I tried to read, I could barely keep a sentence in my head. By the time I got to the fifth word, I couldn’t remember the first three. Now I am able to read faster, write better, remember and process information more quickly than I could have imagined in March. As I began to think more clearly, I understood that my brain worked in slightly different ways. The only way I can describe this process is like seeing the top of a mountain from a path but without the ability to find the way up. I can still see the top, but I’ve forgotten the exact way. I may not always remember precisely where the path is but by taking one step at a time, little by little, I realize I can still get there, even if I sometimes take a slightly different route. I find the word, locate the answer, and formulate the question as my brain heals, rewires and reconnects. My vision and hearing were affected in the blast. It’s much harder for me to hear conversations when there is background noise—at a restaurant, for example, or in a crowded room. And the blast, or the fall afterward, damaged a nerve that has left me with a black pie-shaped wedge in my field of vision. I can no longer see objects in the upper right quadrant of my sight. So again, I’ve learned to compensate. I move my eyes and head around more to see. I turn the newspaper at an angle to view it all. But I am no longer very effective at the net in tennis and basketball is out. I have no problem driving, but I miss weekend soccer with the old-guy league in my town. Those sports run the risk of potential damage that a person with a head injury cannot afford. On June 13, 2006, I returned to the ABC newsroom for the first time since my injury, accompanied by Lee, David Westin, and Charlie Gibson. It was just a month after the surgeons had given me a new skull. My hair was still shaved close to my head, my scars visible. I was tentative at first and then I felt the wave of love and good wishes of my colleagues. I was overwhelmed. There were tears and hugs and stories shared of the places we’d been together, the hours logged in the edit room, the time spent gathering news. I’d missed all of these people and it was clear they’d missed me too. It felt like coming home. This excerpt was adapted from In An Instant by Bob and Lee Woodruff, © 2007 and published by Random House ABILITY 43


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HOLLY IN BLOOM A Popular Actress Springs Into Philanthropy

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s a budding star, Holly Robinson Peete was eager to play opposite her dad, Matt Robinson, the lovable Gordon on Sesame Street, but she flubbed her line. That turned out to be only a speedbump on the road to success. She went on to work consistently in television on such shows as 21 Jump Street, and Hangin’ with Mr. Cooper, as well as the upcoming ABC pilot Football Wives, with her mother Delores behind the scenes as her manager. Getting a gig on Wives is ironic because for more than a decade, the actress has been married to Rodney Peete, who played in the NFL for many years. After Holly’s dad was diagnosed with Parkinson’s, the husband-and-wife team created the HollyRod Foundation. Though too late to help Holly’s dad, who died of his disease a few years ago, the couple is determined to help find a cure for Parkinson’s and to assist those living with the condition. As parents of four: twins Ryan & RJ, as well as Robinson and Roman, they were also inspired to start HollyRod4Kids, to advocate for those too young to fight for themselves. Chet Cooper: Why did you start the HollyRod Foundation? Holly Robinson Peete: Rodney and I created it over 10 years ago because my father had Parkinson’s for many years, and we had to support him. We were so thankful that Rodney had a job in the NFL and I had TV work in order to support him. But my father was an amazing writer. He originated the part of Gordon on Sesame Street, and went on to write and produce The Cosby Show for the whole run of the show. He had such an amazing career, and Parkinson’s disease got him at 46, very young. It was during a time when I was in college and it just wiped him out ABILITY 45


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on so many levels. And as it progressed, and he got more and more debilitated, it became really difficult for him to do pretty much anything. So he lived with it for 20-some years, and passed away four years ago. But about 10 years ago, I was moaning and groaning about, “Why me? Why my dad?” My husband came to me and said, “You know what? The worst-case scenario would be if we weren’t able to take care of him—then what?” We all know the health-care situation in this country. That’s when we started to go on television programs and talk about what my dad was going through. Afterwards, we started getting a lot of letters. People were saying, “I live in Harlem. My uncle has Parkinson’s. We’re all each other has, and he’s in a corner in a ball, and he can’t get out of that ball because he can’t afford to medicate.” Then we said, “We need to expand this and help other people with their quality of life.” That’s where the HollyRod Foundation came in. It’s grown. We do events around Super Bowl time in the Los Angeles area. We’ve expanded our mission a little bit with the kids’ arm, HollyRod4Kids, to help and support children’s causes. So it’s really been an amazing blessing. Whenever you have something tragic happen, it really is true that when you focus on helping other people, you don’t forget the pain, but you’re somehow a little more OK with the thing that’s a bummer in your life. We firmly believe that you’ve got to balance out the earth by giving back to it in some way. It’s kind of like our family credo. So HollyRod has been such a blessing. So many amazing things have happened to me as a result of really trying to hone the philanthropic arm of my life. I’m really glad that we started it, and I think my dad would be proud of it. CC: While your father was alive, was he able to be treated with any of the newer medications for Parkinson’s? HRP: He came down with it around the time when the

Internet was just getting started. Information wasn’t as readily available as it is now. There were some breakthroughs. I’d have to say that if we’d had a different administration during most of the time that he was sick, I really feel we would be closer to a total cure for Parkinson’s now. But with all the ethical issues with the stem cells—that field of research was probably the most promising thing from which he might have benefited. He did have some stem cells implanted in his brain and they really did help alleviate some of his symptoms, but he was too far into the disease, too debilitated to really benefit from some of the treatments. That was one of the reasons we wanted to do HollyRod as well, because we really felt as though, for a while there, a cure was coming on a fast track. But so much government bureaucracy has blocked a lot of the progress. There are a lot of people for whom a cure is going to be way too late. So we wanted to really focus on those people, or on those who won’t be able to afford the cure. My father wasn’t really the beneficiary of a lot of things, but there were some new medications. There’s a lot more available now, and sadly he’s not here to reap the benefits. CC: Are you allied with any of the companies working in this area? HRP: We have worked in the past with Novartis, as well as some other companies. We’re actively seeking another corporate partnership with a pharmaceutical company. We’re in talks right now to align HollyRod with some pharmaceutical companies that we can brand with. For a while there, the pharmaceutical companies had stopped supporting foundations. There was some kind of corporate policy where they all stopped doing it. But now they’re back on board with foundations, helping and giving in-kind products. We have a compassionate care center down at the University of Southern California, where we give out medications and samples and physical and occupational therapy just to help people get through this disease. So we reach out to many pharmaceutical companies for in-kind donations, such as samples of Sinemet, which is the most widely used drug for Parkinson’s. We’re really trying to line ourselves up to get more involved with pharmaceuticals. CC: What about medical technology companies like Medtronic? HRP: There are other companies that we’re reaching out to as well. We have really great corporate sponsorships that have nothing to do with Parkinson’s disease, such as our alliances with Anheuser Busch and Outback Steakhouse, which have been supporting us all these years. We do have a relationship with Teva Neuroscience, which helps us a lot. But the kind of underwriting we’re looking for has a few more zeros to it. CC: Do you know Medtronic and what they do? HRP: I’ve heard of them.

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Holly's father, Matthew T. Robinson, Jr. on the set of Sesame Street


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CC: They are a leader in the area of neuromodulation. I interviewed Earl Bakken, the founder. He is the father of the wearable pacemaker. HRP: I’ve seen something on him recently. CC: Neuromodulation uses electrical stimulation in a medical procedure to alter nervous system functioning. Neurostimulator probes are put into the brain creating a programmable therapy that manages how neurons fire in specific mapped areas. This therapy is used with people whose drugs are ineffective for controlling their tremors due to Parkinson’s disease. They have a foundation—you might find it interesting to talk with them. HRP: I’ll definitely look more into that, because that’s exactly what we’re doing now. We hired a new executive director and we’re really working hard to get more done. We’ve been very event-driven, celebrity-driven, begging our celebrity friends to come and show their faces and raise some money. But we haven’t been as involved in the scientific area as we want, even though we do have scientists to whom we funnel money at USC, who are in the trenches and who inform us about what’s going on. But they’re scientists, not fundraisers. So we are working to make more connections. CC: Your experience with your father led you to create this foundation, and earlier you mentioned doing something for children. Can you tell me more about that? HRP: I had a brand of maternity clothes, and part of the

deal with the line, which I did with Mervyn’s department store for about three years, was there had to be a philanthropic aspect to it. In other words, they had to donate to HollyRod. But the Parkinson’s cause really wasn’t on their radar as far as their corporate mission. When they brought me onboard, one of the things that we did was a children’s carnival. We’d just invite our friends and their kids and it turned out to be this really wonderful event. We raised a lot of money. At the end, I basically farmed out $100,000 or so to several children’s charities that I researched and liked. We did that a few years ago. But we recently came back from this trip to South Africa where we were invited to go with Oprah Winfrey and her delegation to open her school there, and I had a sense that it was time to rethink the HollyRod4Kids mission. CC: So that trip had an impact on you. HRP: It was unbelievable. We took our children. It was an insane trip, but boy, was it worth it. Our kids visited homes run by 11-year-olds, because the parents had been decimated by HIV-AIDS. It’s one thing to tell kids about the starving children in Africa, but when they sit down and connect with them, that was just—you can’t even describe what that’s like. They really came back changed and generally respectful about everything. They’re nine, nine, four and two, and it impacted them at different levels. We connected with several organizations over there that really support these households that are run by these kids. So we really felt that we wanted to expand our mission to the quality of life for children. ABILITY 47


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It’s very broad, but probably specializing and focusing on children in southern Africa, as well as in New Orleans. We went and made several visits to New Orleans post-Katrina, and the children have just been completely forgotten down there. Schools haven’t been opened yet. There’s no money allocated for them. The red tape is crazy. If you’re looking from the children’s perspective, it can feel like a hopeless scenario. So we went down there several times and talked with them. I had a really great moment recently, because I went to a Hillary Clinton fundraiser, and I got a chance to ask her about it in front of a lot of people. My knees were knocking. My husband was like, “What are you about to do? You’ve got the microphone in your hand.” I asked her very straightforward questions, because they were talking about 9/11 widows and how they came to Washington and they wouldn’t be denied. I said, “With all due respect to them, where is the money for the people in New Orleans? I know that the 9/11 widows lost their loved ones, but these people lost their entire infrastructure, their homes, their jobs, their livelihood, their schools—everything. Where is that money?” So she thought it was a very good question and said during the time of 9/11, there was a Democratic Congress. She gave a very partisan sort of answer. But the bottom line was, what she said to me really kind of made me think that there was no face for these children. There was no face for them. The 9/11 widows, they didn’t need celebrities. They didn’t need anybody. They just rolled up and they were determined women and you couldn’t say no to them on Capitol Hill. And I realized that she’s right. There really is no person who’s spearheading the children’s causes and getting it on the docket of some of these congressmen and senators. So then I was sort of inspired and I thought about seeing if I could get some of these families to come with me to

Capitol Hill to lobby for these children, because the children are just suffering so badly. So I think HollyRod4Kids is sort of still finding its mission. We’ve allocated quite a bit of money in South Africa, where we visited, as well as in the Ninth Ward area of New Orleans. I’m thinking that it’s really more of a qualityof-life issue for children, who are really facing some unbelievable uphill circumstances. Now we’re putting together our current carnival. I just went to New York and met with more corporations about reinventing the carnival with a slightly different mission, and doling the monies out to organizations like the Children’s Defense Fund and people who are really focused on these tangible missions. CC: I would love to introduce you to a woman, Valerie Sobel. I don’t know if you’ve heard her name recently— she was in People magazine under a “Heroes” section. You mentioned red tape, which is so frustrating sometimes, and that problem also motivated her to set up her own philanthropy. She created a foundation after losing her child, and then almost immediately afterward her husband died. So she’s there looking at her life, just as you looked at your life and your family, saying, “The one thing I know I like is giving back, doing good work and feeling good about it.” Valerie found herself wondering how she could help other women faced with the same tragedy. She said,“I had money. I had the ability to do what I needed. What if I was a working mother and needed to go and sit by my son as he was dying? How do women do that? How are single parents capable of dealing with children who are sick?” So she put up $4 million of her own money to start the Andre Sobel River of Life Foundation (named after her son). She has set up alliances with the social workers at major children’s cancer hospitals across the country, and as soon as somebody says, “I can’t pay my rent because I have to go to the hospital and be with my child,” or “I’m caring for a child at home and I’m going to lose my job,” the social workers know they can call her foundation if other resources have been exhausted. Like you, Valerie is concerned with the red tape that can prevent people from getting the services they need, so her foundation does its best to make the money available immediately—sometimes the very same day—for families in dire straits. She started off with a focus on single mothers, but she’s expanded beyond that. It’s about the gaps that exist in our system. There are funds in place most of the time, but to get through the paperwork and figure out how to access them—who has the ability to do all that most of the time? It’s daunting. HRP: I swear, if I had more time in my life... there’s this part of me that sometimes wants to just forget the acting and do this full time. I don’t want to put down anybody else as far as celebrity organizations, but a lot of people

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are in it for the wrong reasons, or they don’t devote the time and energy. I have been so touched over the years by philanthropy, and the first few years that we started the foundation, I let somebody else do everything and I just showed up. It just wasn’t enough. So I’m listening. I’m constantly trying to network and meet new people who might bring any kind of different angle or sway to HollyRod. I’d love to meet her. We’re working with two big yearly events right now—we have our annual summer event, and we’re also trying to get the go on the carnival, which will probably be in October. So we’re right in the throes of both HollyRod4Kids and HollyRod, just trying to bring as many people on board as possible. CC: I got so far into the philanthropy line of thinking, I forgot to ask you about your new TV project. HRP: I have a new pilot. I don’t usually like to talk about pilots, because it could jinx them. But this one certainly has a lot of heat to it, and there is a certain ironic twist about the subject matter, because it’s called Football Wives. I’ve been married to Rodney going on 12 years, though he’s actually retired now. He played 16 years in the NFL, with an even longer career if you include all his college and high school football years. And I wrote a book about football for women, called Get Your Own Damn Beer, I’m Watching the Game: A Woman’s Guide to Football. It was just ironic; when I saw the part, I thought, “Might get a little too on the nose—but I certainly know about it.” CC: So it’s just coincidental that you also wrote a book about football wives—you weren’t involved in writing this pilot? Is any of it taken from your book? HRP: No, my book is really more of an instructional guide, with funny and sometimes sad and scary stories about my life as a wife. It’s really more about chronicling my life, but also helping women learn about the game in a non-condescending way. And I did, ironically, pitch a sitcom based on my book to CBS a couple of years ago, but that show didn’t quite get past the script form. And then along came this show, which is based on the BBC show Footballers’ Wives, which has a little bit of a following and is very popular in other parts of the world. So another irony is that I don’t even play a wife—I play a football mom, which is a little bit humbling. I play this young, hot mom, if you will, of a wide receiver, and the corresponding character in the BBC show is quite the promiscuous nymphet. CC: And that’s why they called you? HRP: (laughs) Well, I’m not really sure why, but I have a feeling. The character is supposed to be 44; I’ll be 43 in a few months. I think they were looking for an actress who was in her forties but kind of looked a little younger. That was flattering to me. I have to say, it’s the first time I ever auditioned for a job where I brought my birth certificate along to prove to them I was actually approaching my mid-forties—because that’s how the character was written. It’s next to impossible to find a part on a major television series for a black actress who’s over 40. Especially a role that’s kind of sexy. That’s a hard gig to locate. CC: I guess the Yellow Pages wouldn’t help. So do you remember us hanging out. HRP: (laughs) What? CC: Don’t leave me Hanging...


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HRP: Oh. (laughs) I actually loved that show, and I just got a chance to see Mark Curry from the show about a week and a half ago. He had a terrible accident where he got burned. His water heater exploded.

and then they said, “Let’s do it again.” I remember having this little attitude like, “What are you talking about? We got it. What are we doing it again for?” CC: “I did that one great! It was perfect!”

CC: Is he okay? HRP: He was severely burned on about 20 percent of his body. But he’s better now. He’s on the road, making fun of himself. When I saw him, I joked, “I know you admired Richard Pryor, but this is ridiculous!” He’s gotten past it, but it was a rough ride, he was in a coma for a while. Fortunately, I got a great chance to reconnect with him in Richmond, Virginia. We both happened to be in town doing separate appearances. We talked about the old Cooper days.

HRP: (laughs) Yeah! “It was perfect, what are you talking about?” And they were saying, “No, we just need to do...” and they made up some little thing. I’m like, “All right.” So then we did it again, and the doorbell rang, and I thought, “Who is that?” and in comes Rodney with his little white suit on, looking like Mr. Rourke from Fantasy Island. And he just came in and got on one knee, and the rest is history. CC: That’s funny. HRP: The cool thing is, that’s on video and we have it for eternity. It’s a really nice memory.

CC: It’s apparent that a large part of your life has been in TV studios, but even your marriage proposal was filmed on set...

CC: I heard something about Oprah chronicling your marriage.

HRP: (laughs) Well, Rodney is a very resourceful guy. I was in the middle of shooting a show. Rodney was playing for the Dallas Cowboys at the time. We shot on Friday nights, and technically that was two nights before a game, when you’re supposed to be getting ready for it. But Rodney asked his coach if he could take off and miss practice on Friday to fly to L.A., propose, and then get on the plane to Dallas late Friday night to get back Saturday. And he did, and he called the executive producers and organized it with the studio and said, “I really want to do this. Will you guys help me?” They were like, “Yeah.” So they kept the cameras rolling and in he came. We were shooting a scene. They got the scene

HRP: We’ve been making appearances on The Oprah Winfrey Show over the years. They’ve sort of had us as their resident couple, whom they’ve followed. They saw the video of the proposal and they wanted to air it. Also, they do a Valentine special—or “I Love You Day”—so we came and we talked about that. And then we did something else called Celebrity-Spouse Challenge, where we switched roles for a day. Oh, then we started having kids, and I was pregnant. So every little milestone, they were there and chronicled it. We were just on a couple of months ago. We’re friends, and Oprah’s been really, really nice to our family. CC: I actually caught part of a late night Oprah rerun, and I saw you and Rod. HRP: We shot that in December and they aired it in late January, and then they just re-aired it. It was really nice that we got a chance to see it all put together. You can go through shooting footage and film, but to have Harpo Productions cut it all together, that’s kind of tight. I took that, burned a copy of the show and put it in each one of the kids’ little memory boxes. It was like bada-bing, you know? So that’s kind of cool. We’ve been very fortunate to have made friends with Oprah. What she did in South Africa just made me feel like I was—on the philanthropic scale—like a negative 10. I felt like, Wait, man, I’m not even a real philanthropist. I’ve gotta get a move on! I was so blown away. That was the mother of all philanthropic acts. Just her attention to the detail in that school she built—in every little corner there was art. It was the culmination of her life’s work. She said it was the reason why she didn’t have kids, and the reason why she made all this money. It was really, really amazing. From a philanthropic standpoint it inspired me tremendously.

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CC: I think she sets an example that encourages other people to further what they’re doing.

CC: You started off wanting to be an actress or a singer?

HRP: Yes, it does. We spent five days with her, we partied and did New Year’s Eve with her, and then went to her school. It was just really quite an uplifting and amazing trip. We were having a good old time, and then we got a chance to see these really amazing things. It was such an interesting five days. The last message that she gave us as we were getting ready to all go our separate ways was, “I hope God’s inspired you to do something like this.” We all looked at her like, “You’re right. If only we had $40 million.” She replied, “No, it’s not about money. It’s about just volunteering, spreading the word, whatever you can do.” So all of us walked away extremely inspired. I’m telling you, philanthropy is like a little bit of a drug. I have to say, it’s intoxicating.

HRP: I wanted to be a singer, actually. I saw a Broadway musical called Pearlie years ago. My dad’s friend starred in it at the time, and I got to see it at six or seven years old, and I was like, “Ooh, yeah, I’ve got to be on stage! I’ve got to sing!” Then my dad threatened me to within an inch of my life that I could never go into show business until I got my college degree, and I’m glad he did that, because getting an education was really worth it. I did that, got 21 Jump Street and got solid with television, which was a blessing. I enjoy TV, but never quite got to do the singing thing. I did sing the theme song to 21 Jump Street and Hangin’ with Mr. Cooper.

CC: I think you’re right—it is.

HRP: Yeah, I got to do some fun closet-singing stuff, but never really realized that dream. Seriously, I really feel like, after 40-plus years, what I want people to remember me by is how I gave back. I mean, I don’t want an Academy Award or a Grammy; I want someone to say, “She made a difference in the world where it really counted.” Not that the arts don’t count. The arts are great. But I would way rather win a Nobel Peace Prize than win an Academy Award. Everyone’s got her dreams, and that’s really what the culmination of this half of my life has meant to me. The philanthropic edge is what I’d like to sharpen more than anything. I love to act and I’ve got to work—I’ve got four kids and I have to keep them all in school. But if I didn’t have to work and could focus on HollyRod all day? I would do it.

HRP: I wasn’t born with a trust fund or anything. I don’t have $900 million to give out like a lot of people. There are some people in this world who do. I didn’t have money handed to me, so it’s a little hard for me, because I have to raise the money and then give it out. But to be able to raise that money and then write those checks and finally see things come together—to me, there’s no better feeling. You can go buy all the Bentleys you want, buy all the Louis Vuitton bags, buy homes around the world, but when you give to someone else and you make their life livable, or you help them get up every day so they can go to work, there’s nothing more invigorating. Oh, I just can’t tell you! It just makes you feel like you’re on top of the world. It makes you float. There are certain people who just don’t get that. They don’t get the power of giving. They’re so into taking and taking and saving their money. I’m like, “What are you saving it for? Give it! Donate it back! Make it do something that’s going to affect this world.”

CC: Oh, did you?

www.hollyrod.org

If I didn’t have four kids and have to work and do the things I have to do, if someone said to me, “Here’s a bunch of money,” I’d have such a great time running around trying to figure out what to support. I just think that that is the biggest blessing to be able to do that, and I’m wholly inspired by philanthropists who do it. Wallis Annenberg from the Annenberg Foundation is probably one of our biggest underwriters and supporters. She’s one who is sitting on an endowment, and she’s got to write checks. People think that it’s easy, too, but you have to weigh out things and decide and really stick to your mission. You’ve also got to focus on what it is that you’re doing and make sure everything you support is going to support your mission. I’m inspired by Wallis and Oprah. They’re who I one day want to be. As a child I didn’t. I wanted to be like Diana Ross, you know? But I’ve grown up and traveled through the world and seen things. Now I just really want to give back, give back and give back. The Peete’s renewed vows on their 10th anniversary ABILITY 51


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B uilding 18: It’s a structure where holes and peeling wallpaper are normal, where mold infests the air and where roaches go to die. It’s a brick wall away from drug deals, and only five miles from the White House. It’s an outpatient holding facility of Walter Reed Army Medical Center. Nobody guaranteed the Ritz, mind you, but soldiers who come here to rehabilitate—upwards of 700 injured while fighting in Iraq and Afghanistan—might have expected something a bit more upscale. Some vets have even found that after completing treatment, they’re still not free to go. Their biggest problem, according to reports, isn’t their sub-par living quarters, to which many have been assigned, but the sluggish paperpushing that prevents them from getting out and on with their lives. In a series of articles, The Washington Post has chronicled Walter Reed’s pitfalls. The paper’s ongoing coverage of the dilapidated outpost station a k a Building 18, and other holding areas for recovering and rehabilitating patients, relied on interviews of soldiers, their families and even staff members to give their accounts of how checking into the facility was a well-oiled process but that checking out was—and continues to be—a nightmare. On the way in, injured soldiers pass through a process that can take them from the Iraqi desert to a medical center in Germany and on to Walter Reed in Washington DC in as few as 48 hours. But many soldiers and their families told the Post that getting out can take as many as 16 months as they were forced to trudge through paperwork, miscommunication and misinformation. “I was sick from the standpoint of feeling badly that we were not providing to our wounded troops the end-toend care that they deserve,” said Chairman of Joint Chiefs of Staff Peter Pace at a recent news conference. He added that he had routinely asked vets and their families how they were doing, and felt assured by them that they were receiving the very best care possible. But the issue with Walter Reed isn’t from patients, it’s from outpatients—soldiers who have received care, and haven’t yet been released. Patients and their families report of how leaving the facility required that they complete a series of 22 documents, 52

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which hopelessly bogged down the process. They told of how databases failed to work with each other, often convoluted records or even lose track of soldiers who have spent, in many cases, the last year fighting for their country. These kinds of delays have kept them in living quarters such as Building 18, isolated from progress and rehabilitation, and as the Post reported, keeping many soldiers from speaking to case managers for weeks. Some vets would be sick, and yet put in charge of others who were also sick, and would become so frustrated that they would pack their bags and leave without telling anyone. During a news conference in late February, the Army’s former Surgeon General Kevin C. Kiley questioned Walter Reed’s harsh portrayal saying, “I’m not sure it was an accurate representation.” The Army, however, has not denied any of the report’s allegations. In fact, officials have confirmed the problems and pledged change in the future. “I think I did something unheard of in this town. I actually thanked the reporters for bringing it to our attention,” Secretary of Defense Robert M. Gates said last March on CBS’s Face the Nation, acknowledging that he now receives updates every two weeks on the progress of corrective action. “Frankly, like everybody else I was both angered and offended by the fact that we had allowed a situation to develop that made the hospital administration... an adversary rather than an ally,” Gates continued, noting that he still considers the medical staff and care at the beleaguered facility first-class. “The doctors and nurses and staff at Walter Reed are the best in the world. They’re immensely dedicated, they’re immensely talented and we owe a lot to them.” During congressional hearings, many soldiers, families and current and former staff members staunchly supported Walter Reed’s medical services for saving the lives of veteran soldiers. Walter Reed employs approximately 600 full-time physicians, 600 military and civilian registered nurses and 550 licensed practical nurses and para-professionals. “But in several areas relating to service, members recuperating from injury or seeking to move forward with their lives, we have fallen short,” Dr. David S.C. Chu wrote in a late March response in USA Today. Chu, who is undersecretary of defense for personnel and readiness,


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went on to say: “To those adversely affected, and to the American public, I apologize. We are identifying and correcting the shortcomings.” Identification may be the easy part. The Post reports have certainly done that through first-hand accounts of individuals who had to live with those shortcomings, work in those environments and struggled to find hope for future. “There will be no excuses, only action,” Vice President Cheney told a veterans group shortly after the reports became breaking news. “We’re going to fix the problems at Walter Reed, period.” President Bush concurred, adding, “Some of our troops at Walter Reed have experienced bureaucratic delays and living conditions that are less than they deserve.” In that same speech to an American Legion meeting in Washington, he added, “It’s unacceptable to me, it is unacceptable to you, it’s unacceptable to our country, and it’s not going to continue.” Though corrective action has already begun, the trouble spots continue to fall under a microscope. “There are a number of metrics that can and will be used to measure the success of our efforts. At the top of the list will be customer satisfaction,” said Dr. William Winkenwerder Jr., assistant secretary of defense for health affairs. “Our wounded men and women deserve only the best medicine, treatment and care, and it is the position of Department of Defense that we will do everything in our power to ensure that for them.” Defense Secretary Gates formed a Pentagon review board of eight members in early March, and scheduled hearings to determine what exactly went wrong in the communication breakdown at Walter Reed, not to mention the environment of Building 18. “Several task forces are assessing the entire spectrum of support to our service members,” Winkenwerder said. “They have short timelines to report findings, and we will have short timelines to implement their recommendations.” Both the Army and the Department of Defense have stuck to their word that they would act swiftly, setting off the following flood of activity: March 2, 2007: Army Secretary Francis Harvey was forced out as the head of Walter Reed Medical Center. March 9: Army Gen. Richard Cody, the vice chief of staff, announced leadership changes to Walter Reed’s medical hold units. Among the changes were the appointment of Army Brig. Gen. Michael S. Tucker as deputy commanding general of Walter Reed, a new position at the medical center, which deals strictly with the administrative process. “He’s going to be the guy that we look to to be the soldiers’ and families’ advocate as they

go through inpatient and outpatient, but he’s going to be the ‘bureaucratic buster’... and take on this bureaucracy that at times frustrates our soldiers,” Cody told The American Forces Press Service. March 11: Lt. Gen. Kevin C. Kiley, the Army’s former surgeon general, who headed Walter Reed from 20022004 and again earlier this year, requested retirement. —Maj. Gen. Gale S. Pollock was immediately promoted to the surgeon general position, the first non-physician to hold the post. March 14: Maj. Gen. George W. Weightman was relieved of his command at Walter Reed. —The first of two public hearings were held where soldiers detailed their treatment at Walter Reed for three hours before the Pentagon review board. March 19: Army officials launched a “Wounded Soldier and Family Hotline” to help get information or assistance to those with medical issues. “Recent events made it clear the Army needs to revise how it meets the needs of our wounded and injured soldiers and their families,” Army officials said in a statement coinciding with the hotline’s launch. “In certain cases, the soldiers’ chain of command could have done a better job in helping resolve medically related issues. “The Army’s intent is to ensure wounded and injured soldiers and their families that they receive the best medical care possible. The Army chain of command will ensure every soldier is assisted in navigating the military health-care system.” Secretary Gates acknowledged that the health-care hotline has begun to receive calls, and he noted that having the care of soldiers scrutinized is a positive action in the larger scene. “We learn from our mistakes,” Winkenwerder said. “In the Department, we have a track record for recognizing how and why things have gone wrong, and then fixing them.” Vice Chief of Staff Cody took it a step further: “This national dialogue we’re having right now, I think, is very helpful,” he said. “It’s a national dialogue as to what this country owes to these servicemen and women who have raised their right hand during war and enlisted, or raised their right hand again during war and re-enlisted, and said, ‘America, in your time of need, I will go forward and defend you.’ “What does this country owe them when they do get wounded? Certainly not a bureaucratic system that makes them have to argue or stay longer so they get the right benefits and the right security for the sacrifice that they have given.” by Josh Pate ABILITY 53


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he picture is stark: A woman sits in her wheelchair in a small trailer. Only three concrete steps lie between the trailer’s threshold and the ground below, but they prevent her from venturing outside. Narrow doorways make it impossible for her to move from one room to another. Curtains cover the small living room window where she spends most of her days, isolated from the outside world. A car accident in 1999 left Selma Smith with severe quadriplegia. Then, “friends” who stepped in to oversee her finances left her in near financial ruin, and a frightening nursing home experience led her to conclude she was actually safer living in near isolation than in a total-care facility. As Americans, we understand that such situations occur every day in developing countries. We expect systems to break down in countries with fewer resources. But sometimes we look, yet don’t see, when things go horribly wrong right around us. Living in the small town of Benson, North Carolina, Selma is only one of many thousands of individuals in this country whose circumstances dictate a life of confinement. Whether due to acquired disabilities or age-related mobility issues, increasing numbers of Americans are finding themselves in homes that don’t accommodate their changing needs. Unfortunately, many of these individuals lack the means necessary to incorporate even simple accessibility features into their homes. Fortunately, there are programs, both government and nonprofit, that provide assistance to people like Selma. Bright and educated, she never resigned herself to a shut-in’s life, and through tenacity she eventually became connected with Johnston County Habitat for Humanity and the nonprofit organization ABILITY Awareness, which hosts the award-winning ABILITY House program. Through the program, ABILITY Awareness partners with local Habitat for Humanity affiliates to construct accessible, low-income homes for people with disabilities, while also inviting volunteers with disabilities to help build the homes. It wasn’t by accident or coincidence that ABILITY Awareness and Johnston County Habitat for Humanity began to discuss building a home in this small town about an hour and a half from Raleigh. Debbie Privet, a staffer in Congressman Bob Etheridge’s district office, saw an ad in ABILITY Magazine for the ABILITY House program and recognize the benefit this type of build could bring to the community. A telephone call later and the wheels were set in motion. Initially, Judi Pennella, the new executive director of ABILITY Awareness, expressed concern about the prospective location: “In the past, our organization has built ABILITY Houses in metropolitan areas with large, fully staffed Habitat for Humanity affiliates,” she said. “So coming to a mostly volunteer-run affiliate like Johnston County Habitat for Humanity and building in a small town at first made me a little anxious. We knew we’d have some new challenges. But we soon realized there was no reason to worry. This small, Southern community adopted the project wholeheartedly, and this ABILITY House will be a model for future homes.” The town of Benson is also credited for rallying behind the project and providing vital support from start to finish, an attitude that can make all the difference in the success of such an endeavor.

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Ned Walsh, executive director of Johnston County Habitat for Humanity, had his own initial reservations: “We really didn’t know what we were getting ourselves into with building an ABILITY House. I was concerned about working with volunteers with disabilities and partnering with another organization. I admit I believed they were going to hold us back... but I was wrong. Working with ABILITY Awareness and their staff has been a catalyst for us, and it’s opened my eyes to why building accessible housing is so important for our future.” Nine months after the ground-breaking ceremony for North Carolina’s first ABILITY House—a ceremony that Selma ironically missed as she was unable to leave her trailer—Selma moved into her beautiful new home. As is protocol for every ABILITY House, volunteers with all types of health conditions and disabilities had pitched in to help build her a place that would return her to independence and freedom. “This home means everything to me. A home is the foundation of a family,” Selma said as she looked over her new home, tears welling in her eyes. Her ABILITY House includes many standard universal design features such as doorways and hallways that are at least 36 inches wide, no-step entrances and an accessible restroom. In addition to features that will make the home more accessible and convenient for all people, Selma’s home also takes into account her more specific needs and boasts a state-of-the-art lift system donated by SureHands Lift & Care Systems. This fully supported system will take her from her bed or wheelchair into the restroom, allowing Selma the option of a full shower for the first time in eight years. “We are proud to play a small but very important part in this mission,” said Thomas Herceg, SureHands’ president. “Our goal is to enable Selma and her family to overcome the obstacles in performing basic activities for daily living. Ease with those tasks can leave her with more time and energy for more rewarding activities.”

While the foremost goal of every party involved has been to move Selma from the confinement of her trailer to an accessible home, many have observed that the ABILITY House program has a more far-reaching effect on the community as well. As a result of typical Habitat volunteers working alongside volunteers with disabilities, participants begin to recognize and work with the skills and talents each person brings, as opposed to focusing on what are assumed to be limitations. “North Carolina’s first ABILITY House showcased how easily many different organizations and groups can come together with some planning and project management,” said Jerry Hill who acted as project coordinator for WellsFargo Home Mortgage, a sponsor of the home along with Genworth Financial. Congressman Etheridge volunteered as honorary project chairman, with additional support for the ABILITY House program from ABILITY Magazine. Said Hill, “It can be tough working with so many different groups because everyone has a slightly different agenda and their own way to proceed, but keeping the goal of building this home upfront makes it a lot easier to compromise.” And with a goal of building more homes in North Carolina and across the country, many more will someday get to experience the same life-transforming freedoms that an ABILITY House can offer. www.abilityawareness.org www.habitat.org ABILITY House is a groundbreaking program of the nonprofit ABILITY Awareness, whose mission is to build a world of inclusion for people with disabilities through employment, education, media and volunteer opportunities. ABILITY Awareness actively seeks to partner with organizations to build affordable, accessible homes for people with disabilities. The ABILITY House program is supported in part by a federal grant from the Corporation for National and Community Service, and assistance from founding and continuing sponsor ABILITY Magazine.

One such activity on Selma’s to-do list? Grocery shopping! Just a block from the nearest grocery store, Selma doesn’t hide her excitement about being able to roam the aisles and select her own groceries for a change. The only person more excited than Selma is probably her son. Having served as one of his mother’s primary caretakers for many years, he chuckles as he talks about always picking out the wrong groceries and agrees that this will be a simple freedom his mother will relish. Above: SureHands lift system, installed by GSTS Designs, allows Selma to have more independence and gives added support to her caregiver, Right: Selma’s new address

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hea Eaton is an Adobe Certified Flash Designer who founded Snert Studios , a Flash studio that focuses on accessible, educational entertainment for children. Her mission is to prove that Flash activities can be made fun, interactive and accessible at the same time. ABILITY Magazine: Why ‘Snert’ Studios? Thea Eaton: I am originally from Holland, and ‘Snert’ is a Dutch word for a type of pea soup. Since all the work we do is for children, we wanted to represent ourselves with a short and funny word that kids would like. AM: What does Snert Studios do? TE: We work on Flash edutainment and animations for Pre-K–12. We specialize in building full kids’ sites and animated Flash games that have an instructionally sound design. Educational Flash content usually gets put in a separate text file for accessibility, but this takes away from the learning experience and does not provide true equal access. In our mission to change this, we have come up with new ways to make Flash activities accessible that were usually written off as ‘inaccessible,’ such as jigsaw puzzles and coloring pages. AM: How can you make Flash accessible? TE: You can program Flash to become accessible to screen readers, just like HTML content. Text in dynamic text boxes is read by a screen reader and you can program Alt text for images and movie clips in Flash. The problem is that the screen reader often ‘refreshes’ when Flash content changes. This makes programming Flash

that is interactive very difficult. Whenever the screen refreshes, the screen reader re-starts from the beginning and the user loses his or her place in the game. Screen readers also come with a learning curve, so younger users with low vision may not know how to use one yet. This is often overlooked. For these reasons, we have started to make Flash activities self-voicing. Flash has always had a bad reputation in the accessibility world, when in fact, with a little understanding and insight, it can produce some of the most accessible content out there. AM: How does self-voicing work? TE: An application is self-voicing when it relies on system-level voices, rather than an external tool—like a screen reader—to read the content. This is done by adding pre-recorded audio for visual descriptions and button rollovers. Because screen readers only work when the Flash content is within a browser, self-voicing is a great solution for stand-alone Flash executables, like CD-ROM content and kiosk applications. Most Flash games for younger kids already come with a lot of audio, and are usually made up of a few game screens, so there is little to add to make these activities self-voicing. Younger children also prefer hearing the voice of actors instead of the mechanical screen reader voice. Voice actors give a game that extra dimension where images can’t for some users. An example of this is one of our Egyptian history games about Tutankhamen, or King ‘Tut.’ For the self-voicing audio, we chose a voice that sounded like a British explorer. The explorer’s voice made the self-voicing audio part of the experience. AM: Could you give an example of a self-voicing activity? TE: An example of an accessible game is our popular Whack-a-vole game. Like the traditional Whack-a-mole, you try to hit with the mouse as many voles that pop out of their holes as possible. This is a challenging game to make accessible because it requires the use of a mouse and the ability to visually see where the voles are pop-

Whack-a-vole is accessible for mobility and for users with low vision. Users can tab through the holes and press Enter to whack the voles. Auditory cues help users with low vision locate the voles.

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ping up. Since users with disabilities affecting either mobility or vision might not be able to use the mouse, we have made the activity accessible by using the keyboard. The user can also use the Tab key to tab from hole to hole, and press Enter to ‘whack’ a vole. For users with low vision, we have added audio cues that say ‘hole’ when there is no vole visible, and ‘vole!’ when one has popped up. The challenge is trying to hit the voles by tabbing through the holes. When the user tabs, the time between the voles popping up slows down, which gives the user enough time to find the voles and hit them. Since the word ‘hole’ and ‘vole’ sound alike, it is more fun and challenging to find the ‘vole’. It’s almost more fun than playing it with the mouse!

TE: If you would ask a client, “Do you think these games should be usable?” they will most always say “Of course!” But when you ask them, “Should we make these games accessible?” the answer is likely to be either “No” or “How much does that cost?” We are templating our accessible activities as much as possible to make the solutions more affordable. We want accessibility to be taken as an “Of course!” instead of a “How much?” We are user-testing new templates to ensure that they are fun and usable for the target age groups. Now that we have templates in place, we can already limit the price of accessibility to only the extra audio needed. In the future, we hope to offer the accessible version for the same price. AM: What kind of projects are you currently working on? TE: We are working on an accessible Flash kids’ site for the U.S. Census Bureau with Mindshare Interactive Campaigns. This site will have accessible coloring pages and word-find games. We are also working on new templates for accessible action games. In these games we are experimenting with sound as spatial indicators of where items are in an action game. The Texas Department of Transportation and its agency, EnviroMedia, have selected Go9Media and Snert to revamp the site for Don’t Mess with Texas. We will be working on a new microsite, targeting 6-9 year olds with their litter-prevention message. It will include Flash action games that will be fully accessible. Hopefully this site will set a great example and show that Flash can be interactive, fun and accessible at the same time!

Snert Studios' website supports keyboard shortcuts and a magnifying glass.

The puzzle “Life Cycle of a Frog” is accessible for users with either mobility or vision disabilities. Illustration: Cedric Hohnstadt (vole design) and Thea Eaton

AM: How much does it cost to make an activity selfvoicing?

Camouflage Colors is an accessible online coloring page for users with mobility or vision disabilities. Users can tab to a color, press Enter to select it on their brush, then tab to a coloring area and press Enter to color it in. The colors are described for users with low vision, such as ‘leafy green,’ ‘sky blue’ and ‘coral red.’

www.snertstudios.com www.enviromedia.com www.go9media.com

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ince the signing of the Americans with Disabilities Act in 1990, many employers have struggled with what is sometimes a difficult balancing act: incorporating people with disabilities into their staff while managing very real stigmas, myths and stereotypes. With more than 50 million Americans having some type of disability, this community represents a very talented pool of potential employees. Yet no matter how well intentioned an employer may be, if he or she doesn’t address intrinsic beliefs, qualified employees may be inadvertently overlooked.

one of the most sought-after trainers, and believes the program “serves as a powerful tool delivering fresh insights,” which allow those without a disability to see the world from the perspective of those who have one.

So how can this be changed? How does a human resources manager overcome her perceptions? How does a department director encourage his employees to look past a co-worker’s disability and regard her as a typical employee?

Cathy Cole, an employee with Portland General Electric became familiar with Windmills during an event partially sponsored by her employer. She points out that the program has been successful for many reasons, including the fact that it can be easily implemented in pieces. “Everyone enjoys the experience and the implementation of the module is quite simple,” notes Cole. Another popular component to the training is that the concepts are not limited to disabilities and are written in such a way that other areas of diversity can be addressed as well.

These are the kinds of questions the California Governor’s Committee on the Employment of People with Disabilities explored as they sought to help companies by creating Windmills. An upbeat training program now used by more than half of the Fortune 500 companies, Windmills is aimed at raising awareness of the limitations often imposed on people with disabilities due to a lack of knowledge or low expectations. Through exercises led by a professional trainer who has a disability and is well-schooled in the program’s concepts, participants are able to identify emotions, stereotypes and attitudinal barriers which may cause them to be less effective managers. Through group discussions, the participants examine unfair attitudes and learn methods and techniques that assist them in becoming more effective. Finally, employers are seeing what a person with a disability can do, instead of perceiving what he or she can’t. A leading force behind this program, which has revolutionized both individuals and workplaces, is trainer Alex Valdez. He’s built a reputation as the first comedian with a disability to break into the national stand-up arena, and has been a Windmills trainer for 15 years. More passionate about his now than ever. He remains 60

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The Windmills curriculum is comprised of 11 training modules, with each taking about one hour to complete. Because the program is easily modified to focus on one particular module or a combination of many, it can be tailored to meet the needs of the smallest or largest companies.

Joyce Phelps of the Oregon Department of Human Services recently employed the program’s training sessions in a project advocating for people with disabilities and found: “Windmills spurs participants to recognize their own perceptions of people with disabilities, the origin of those feelings and how they affect their own behavior in the workplace,” says Phelps. “It really prompts participants to self-evaluate.” Many would argue that Windmills is the most powerfully effective tools in leveling the employment playing field for people with disabilities, and Valdez would agree: That’s no joke. by Lynda Jean Groh and Marc Goldman Damon Brooks Associates is the exclusive representative of Windmills Disability Awareness Training seller of the Windmills program, as well as the Disability and Return to Work program, the Disability for Students program and the Diversity and Aging/Mentoring program. For more information call (805) 604-9017 www.DamonBrooks.com


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These are the 11 Windmill modules used for training. EMPATHY - Establishes group and individual identity. Provides an opportunity for participants to better understand their own feelings and the feelings that an employee with a disability may experience in a firstencounter situation. THE STORY - A warm-up experience that allows participants to share experiences they have had with disabilities or with persons of diverse backgrounds. RUMOR GAME - Rumors can be fixtures in the work place. This exercise demonstrates how and why rumors quickly become distorted, and how they can have a negative impact on the job environment. PROFILE - This role-model exercise demonstrates how stereotypes can predetermine ability, placement and advancement. This may be attributed to an employer's lack of experience or limited exposure to the wide range of disabilities. Job matches on a case-by-case basis are explored. DISABILITY: FACT OR FICTION - After completing a short questionnaire, this module teaches participants to anticipate situations that might occur in a workplace employing people with disabilities. It will also present an awareness of etiquette, language and basic employment law. PICK A DISABILITY - Allows individual fears and stereotypes about disabilities to surface. It brings out participants' fears about disability and demonstrates how easily emotional reactions to diversity can be transferred. ASK IT BASKET - Provides a safe environment for participants to ask questions about disabilities by giving them the opportunity to do so anonymously. The answers come from the group. ENCOUNTER - Includes a discussion with a panel of individuals with disabilities in a noncompetitive, relaxed and information-sharing atmosphere. WHOSE FAULT - Demonstrates how prejudices and negative experiences cause us to limit the employment of persons with disabilities. This module looks at how the experience of one disability affects the awareness of others. REASONABLE ACCOMMODATION - Looks at potential needs of workers with disabilities and possible solutions. Includes a review of an Americans with Disabilities Act (ADA) questions/answer sheet on the more frequently asked questions about ADA requirements

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ACROSS 1. Inventor of a machine for the blind which recognizes printed words and reads them aloud 6. Nazi program to get rid of all the weak, disabled and "inferior races" in the 1940's (2 words) 10. "You ___ the apple of my eye" Stevie Wonder 12. Reason to be found 13. Hitler's "answer" for his "eugenics" and "euthanasia" strategies (2 words) 15. Barbie's partner 17. Ghostly looking (4 words) 22. Present 23. Goes with a suit 25. Prejudiced 27. Long for 29. Internet intro question (age, sex location?) 31. Canadian's favorite question? 33. Started on the golf course (2 words) 34. Exceptionally happy 37. "__, myself and I" De La Soul 38. __ and behold! 39. Perhaps the best therapy comes from this (3 words) 44. __ luck (fortunate) 45. Doctors 48. Major environmental problem for the earth (goes with 54 across) 51. Educational certificate 53. Fitness center 54. See 48 across 55. Oakland baseball team

DOWN 1. "Metamorphosis" author 2. He bent spoons telepathically - ridiculed for it/first name 3. Solar, wind, and water power are examples (2 words) 4. Soldiers that need medical help (2 words) 5. A hole __ __! (golfer's dream) 6. Needing a drink.... 7. Control 8. Questioning expression 9. Type of bread 11. Someone who often does not understand 14. Fix 16. Inheritor 18. Can be a point of discrimination 19. Audio frequency, for short 20. Approximate arrival time 21. Principle 24. Swallow 26. Arguments 28. Record company 30. Circle or precious stone? 32. Baked or hearted? 35. Mode or carte (2 words) 36. Neither's partner 39. Show affection for 40. Relative 41. Board or target? 42. 70's rock group, abbr. 43. Poker giveaways 46. Precious stone 47. Actress Long 49. Network type 50. "The right way to __ is to __" Anon 52. Dawn time ABILITY 63


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ABILITY Magazine Holly Robinson Pete