AN /J EC D OORE M HEMAR Volume 2009/10 S Volume $4.99

MAGAZINE VOLUME 2009/10 SHEMARMOORE DEC/JAN THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY ABILITY 3 MANAGING EDITOR Gillian Friedman, MD

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

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

HUMOR WRITERS Jeff Charlebois George Covington, JD Gene Feldman, JD

EDITORS Liz Angeles Diane Chappell Dahvi Fischer Renne Gardner Sonnie Gutierrez Quads ride in South Africa p. 38 Josh Pate David Radcliff 6 HUMOR — A Toast to Santa Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD 11 ASHLEY’S COLUMN — Abroad with Down Time Romney Snyder

HEALTH EDITORS 12 BOOK EXCERPT — Get Off Your Knees Larry Goldstein, MD Natalia Ryndin, MD Extremity Games 16 POWER SOCCER — More Than a Goal Shemar Moore p. 44 CONTRIBUTING WRITERS Gale Kamen, PhD Laurance Johnston, PhD 18 ALIA MALEK — Amreeka the Beautiful Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle 22 BOOK’S COVER — Judging Between the Lines Dana Nelson Paula Pearlman, JD Richard Pimentel 24 HOLLYWOOD FORUM — IAMPWD, Disability and Actors Allen Rucker Kristen McCarthy Thomas Betsy Valnes 28 MULTIPLE SCLEROSIS — MS v SCI David Lander p. 30 Paralympic Games Beijing WEB EDITOR Joy Cortes THE SQUIGMAN — Squeaks by with Craftily Acting Saucy 30 GRAPHIC ART/ ILLUSTRATION LIFE ROLLS ON — More Fun Than a Barrel of Jesse’s Scott Johnson 34 Guy Uesugi

PHOTOGRAPHY 38 QUADS 4 QUADS — Riding Four Ways From Sunday Nancy Villere— CrushPhotoStudios.com Actors event p. 24 ABC Studios 40 BAD BOYS — EEOC Tackles Job Discrimination Music Within Michael Darter

TRANSCRIPTIONIST 42 DREAM WRITER — How to Write Right in the Light Sandy Grabowski

44 MOORE CARE FOR A CAUSE — Hollywood’s Hunky Helper DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

OUSE Building Dreams MARKETING/PROMOTIONS 54 ABILITY H — Liz Angeles Andrew Spielberg

56 INNOVATIONS FOR ACCESSIBILITY — Wired for Better Health Alia Malek p. 18 PUBLIC RELATIONS

ABILITY’s Crossword Puzzle ABILITY’s JSPR

61 CROSSWORD PUZZLE — Oops, Last Issue’s Correction NEWSSTAND CIRCULATION

CONTENTS John Cappello

WWW.ABILITYMAGAZINE.COM EDITORIAL [email protected] ADVERTISING DISTRIBUTION CORPORATE SHIPPING For advertising Warner Publishing Services 8941 Atlanta Ave. NON-PROFITS information e mail A Time-Warner Company Huntington Beach, CA 92627 ABILITY Awareness/Fuller Center [email protected] Faxon - RoweCom Library Tel 949.854.8700 or call Services TTY 949.548.5157 Habitat for Humanity 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Ashley Fiolek p. 11 Swets Blackwell PUBLISHER Chet Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may not be those of ABILITY Magazine POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2009/10 Shemar Moore Dec/Jan Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2009-10 ABILITY Magazine The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corpora- tions, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved.

abilitybuild.org [email protected] abilityawareness.org a toastto Santa

t was colder this year at the North Pole. The summer “Oh, don’t start!” Santa yelled. “Do not start with the had brought about a record snowfall, and the drifts kids! I work my tail off all year for ‘the kids’ and whatta Iwere higher than Robert Downey, Jr. The wind chill I get? Milk and cookies! Go get me a beer.” In a huff, had dipped lower than the OJ Simpson dream team, and Mrs. Claus walked away. apathy had settled in like a flea on the back of a slobber- ing Saint Bernard. Santa had grown old and tired. He was no longer inter- ested in bringing joy to millions of children. He just Santa sat in his Lazy Boy with his pants unsnapped, wanted to retire, sell Toyland, and move to Miami to watching a college football game. Notre Dame was tak- golf and count ballots. He had put in his time: 623 ing on Southern Cal in the Toilet Bowl, and Claus was a years, to be exact. Jolly Old Saint Nick had become bit- big USC fan. (Whenever the announcer would mention ter and antsy. To stifle the lingering discontent, he had “Trojans” it always made Santa giggle.) started drinking, gambling, smoking cigars, and eating Prozac like it was gingerbread. He had gained 265 “Throw the damn ball! You run like a snowman in a tar pounds and was constantly wheezing. His ear and nose pit!” Santa yelled. Mrs. Claus entered the room, carry- hairs were almost as long as his yellow, tainted beard. ing a plate of sugar cookies. As if that weren’t enough, his fingernails were the length of candy canes, and he refused to leave the house “Santa, it’s just a game,” she said as she sat the snacks for fear of germs. on his beefy lap. The toy factory, too, was in disarray. The elves were no “I’ve got 500 beans riding on this, and I’m giving away longer being drug-tested. They were sleeping in after seven and a half points,” Santa snapped. all-night parties, and sexual harassment complaints were on the rise. The reindeer farm was in shambles. The “You promised you weren’t going to gamble anymore barn was in dire need of four walls and a roof. Piles of after the bookie took the sled,” said Mrs. Claus. dung littered the snow, resembling a carton of Ben & Jerry’s Chunky Monkey ice cream. The animals hadn’t “ESPN said it was a lock. Rip up Berman’s list. He gets eaten for weeks and were almost as thin as Calista coal this year,” Santa grumbled. Flockhart. The only way they could fly was on a 767.

“Well, it doesn’t look like anyone’s getting anything this To her credit, Mrs. Claus had tried her best to motivate year. I’m sure the kids—” her husband. She made his favorite dishes, massaged his

6 ABILITY flabby love handles, and even dressed up in a tight East- asked. The man shrugged and grumbled, “Who knew?” er Bunny outfit to see if that would get his eggnog pumping. But it was to no avail. The jolly man wasn’t In his previous life, the Ghost of Christmas Past had looking for jollies anymore. His life had lost its zest— been a Catskill’s comic known for his reliance on one- and we’re not talking soap. Meaning had hopped a bus liner jokes. His material was so bad that audiences to Chicago. Purpose had taken a train to Denver. Ambi- would bombard him with whatever food they had in tion? Well, let’s just say that was on a slow boat to front of them. One night, during the second set, an China, looking to link up with a fluffy, unattached under-ripe squash made contact with his skull. It put the Panda Bear named Ding-a-ling. hack in a coma from which he never recovered. Ironi- cally, the vegetable had rendered the man a vegetable. Christmas was just around the corner and down 34th But just before the comedian had died, the hospital nurse Street. Things did not look good. Santa was now up to swears she heard him mumble, “Take my life... please.” three fifths of Smirnoff a day and his nose was so red that if he did venture out on Christmas Eve, he could likely The ghostly, funny man took a long puff of his cigar and guide his own sleigh. The alcohol had made him irritable. then exhaled a roomful of smoke. When the second- At the drop of a mistletoe leaf, he would fly into a rage. hand smog had cleared, Santa and the comic found Elves would tease him by sticking “kick me” signs on his themselves standing at the foot of a rickety bed. A frail, back, putting mascara on his face when he passed out, dying woman resembling a young Phyllis Diller lay and hiding wet, sticky gumdrops in his beard. The rein- covered by a green and red Afghan. Her wrinkly head deer had all kept their distance ever since the night that was propped upon a goose-feather pillow, and a small Santa, in a drunken stupor, had staggered into the barn boy stood next to her, feeding the withering hag some and jumped on Blitzen’s back, yelling, “Yee haw! Get cocktail peanuts. along little dogie!” When the frightened animal tried to buck the heavy oaf off, the intoxicated slob vomited on “Great balls of popcorn! That’s my, my mother!” Santa its head and fell to the ground laughing. The members of exclaimed. “Momma, Momma! It’s me, Nicholas!” the traumatized sled team all huddled in a corner, quiver- Santa called out. ing and fighting to hide behind one another. “Hey, no heckling. She can’t hear you,” the ghost said. One snowy night, Santa passed out on the floor near the couch. (One drink fewer and there’s a good possibility “Who’s that small boy?” asked Santa he may have made it to the sofa, but that’s pure specula- tion.) Next to him, a roaring fire crackled. Luckily, it “Listen to you,” the comic quipped. “When they passed was in the fireplace. As the lumpy lush lay on the floor, out brains you must’ve thought they said trains and snoring through his crusty whiskers, a bright light illu- taken one to Albany. That’s you, ya little brat.” minated him. “But my hair was red, not black,” Claus said. He struggled to open his eyes, grumbling, “You damn elves leave me the hell—” “Yea, well, color flashbacks ain’t cheap, and ‘dis comes out of my pocket, tubby,” the comic responded. But a vision halted his sentence. Santa’s blood-shot pupils focused on what appeared to be a short, old bald “I’m sorry they were out of cashews, Momma,” the man dressed in a cheap suit and smoking a cigar. young boy said, placing a beer nut on his mother’s dry “Where did you come from?” Santa slurred. tongue.

“I just flew in from Purgatory, and boy do my arms feel “That’s all right, Nicky,” the woman gasped. “Just guilty,” the ghost joked. promise me you’ll make toys and deliver them to poor, unfortunate children all around the world.” “Just who in the blazes are you?” Santa asked him. “But, I thought you wanted me to be a lawyer, “I’m da Ghost of Christmas Past. And speaking of Momma,” said the young Claus. Christmas, last year my wife put a bow in her hair and wanted me to unwrap her. I exchanged her for a tie.” A “No, oh no, you’ll never get to Heaven that way,” his quick drumroll and a cymbal crash came from some- mother coughed as she patted his tiny head. “Go with where above. Santa just stared at the man. the toys, my boy. Go with the toys.”

“Oy vey, tough crowd,” the ghost snapped. Shaking it “I promise, Momma. I promise,” the tyke answered. off, he grabbed Santa’s arm and said “Let’s go Slim, we At the foot of the bed, Santa mumbled, “The toys...” as gotta look back on your life.” he looked at the comic.

“Ho, ho, hold on a second. Aren’t you Jewish?” Santa The ghost smiled and said, “Two toys walk into a bar...”

ABILITY 7 Morning had arrived and Santa’s eyes slowly opened, his “Didn’t I put some golf clubs under your tree one year?” tattered head resting on an empty bottle of Wild Turkey. Santa recalled. Sitting up, he grabbed his throbbing skull and groaned in pain. “Ho, ho, holy snowballs, I should’ve put more ice in “1938, and a fine set they were. Dunlop XL’s, I ba, ba, the glass.” A loud noise startled him as Mrs. Claus believe” the man smiled as he stood up. “Well, come on pushed a reverberating vacuum cleaner into the room. ba, ba, big boy, we got places to ba, be.” And with that, Santa pulled himself onto the couch. Huffing, he leaned he exhaled a puff of pipe vapors, and the pair vanished over and bellowed, “Turn that thing off!” into thin, cloudy air.

After several overt strokes of the Red Devil, she clicked The twosome found themselves in the toy factory. The off the machine. “Did you enjoy yourself last night?” place was a mess. Littering the floors were dolls without she coldly inquired. heads, wagons without wheels, stuffing seeping from fuzzy animals and toy soldiers missing uniforms. In “Don’t start on me. Do not start,” Santa said in his best fact, there wasn’t one completed toy. “Holy night! Ralph Kramden tone. What’s happened to the toys?” Santa gasped.

“Is there or isn’t there going to be a Christmas this “Looks to me like your workers went on holiday for the year?” asked his wife. “Because I need to know. If not, holidays,” the crooner quipped. From the back room, I’ll just throw the sugar plums out. There’s no use in the sounds of rap music shook the walls. keeping—” “What in the Charles Dickens is that noise?” asked “Enough, woman!” Santa yelled, as he made his way Santa. over to the dry bar. Trembling, he began to mix a Bloody Mary as Mrs. Claus started the vacuum again. “Must be ba, ba, buffalo mating,” the smoking ghost Santa took a sip of his drink, made a sour expression, said. “It sure ain’t music, ba ba ba boo.” then added some Tabasco sauce. He looked in the mir- ror. His face resembled the surface of Mars, with craters Suddenly, Santa found himself in the midst of a wild and deep canals burrowing from the chin to the fore- party. Liquor flowed like latte at a corner Starbucks. head. “The toys...” his mother’s raspy voice whispered, Drunk reindeer flew recklessly into walls. Elves danced, as Santa remembered his dream. Mrs. Claus finally bumped and ground, half-naked, on the work benches. turned off the vacuum and started to walk out. “Quite a show you’re running here, Saint Nick,” the “Did you see an old Jewish man here last night?” Santa ghost exclaimed. “Reminds me a little of the Play, ba, asked her. “He told jokes and, and...carried a violin.” ba, boy Mansion. I thought your racket was making toys for little girls and ba, ba, boys.” Mrs. Claus just glared at him. “You’d better get some help, fat man,” she snorted as she stormed out. “Yeah, well, I’m tired of the toy business. Let the Japan- ese have the market. I’ve had my fill,” Santa belched. By 7:00 that evening, Santa was half-in-the-bag, literal- ly. He had climbed into one of his burlap sacks that typi- “Sounds like you’re in a ba, ba bit of a pickle,” replied cally hold presents and had fallen face-down on the the ghost, pretending to swing a four-iron. newly-swept carpet. All day he had polluted his body with a mixture of tequila, Bacardi rum, and a splash of “I’d like to be pickled,” Santa huffed. “Can we get outta eggnog. It wasn’t a pretty sight. Disgusted, Mrs. Claus here?” had gone into town to shop for some scented candles and a brick of cinnamon botanical potpourri. As a result “You know, you remind me of a chubby little sidekick I of his afternoon binge, the chubby man drifted off to used to work with,” laughed the ghost. “Always wanted Tipsy Town. the funny lines. Never wanted to give. Poor fella got the laughs. Me, well, I just wound up with the ba, ba, beau- Santa was awakened by a crooning version of “White tiful girl.” Christmas.” In the corner of the room sat a man with droopy cheeks, casually smoking a pipe. “Hey ba, ba, “You stuttering idiot,” Santa sneered. “Is that why you boy,” his low, bass voice rumbled. “Looks to me like brought me here? To tell me some nonsensical ho, ho, you been dipping in the sauce a little too much.” horrifically lame story?”

Santa sat up and rubbed his eyes. “Who are you?” The ghost shook his head. “You just don’t get it ba, ba, boy. Don’t you see? It’s when we give that we receive, a “Oh, I’m the Ghost of Christmas Present,” the man said pah-rum-pa-pum-pum.” as he puffed away. “I was just on the road to Heaven, thought I’d swing ba, ba, by and pick up my wings.” “I need a drink,” Claus mumbled.

8 ABILITY He awoke bright and early the next afternoon to find his Santa shook his head in disgust. “That father’s a selfish wife standing over him. “You know,” she said, “if we louse,” he mumbled. had toys this year we could fill the bags under your eyes.” Santa merely grunted. “You smell like a The couple continued to battle as the young boy Whoville brewery,” Mrs. Claus cracked. snatched his Snoopy blanket and ran out the door. Santa tried to grab him but the little guy just passed right Santa managed to stumble over to the sink. His hands through his body. “Where’s he going?” Santa asked the shook as he filled a glass of water, placed six aspirins on ghost. “It’s snowing and freezing out there!” his discolored tongue and washed them down. “And another thing—” his wife began. “Tha, tha, that it is. But it’s warmer out there than it is in here,” the ghost replied. “Woman, you’re gonna be the death of me!” Santa burped, his balance uncertain. “You hear me? The death “What happens to him?” Santa questioned. of me!” “Oh, the, the, they find the kid tomorrow morning, Enraged, Mrs. Claus threw one of her fuzzy boots at frozen, on the side of the road. In the snow he wrote him, barely missing his head. “Ho, ho, ho,” he snickered. ‘God Bless Everyo’.”

“That does it, you abdominal snowman,” snapped Mrs. Santa’s heart stopped as he struggled to breathe. “Who Claus. “I’m going to Mother’s.” would let this happen?” he choked out.

Mrs. Claus stormed out of the room in tears. Santa The bickering spouses emerged from the back room. The kicked the Christmas tree and ornaments and bulbs shat- man smoked a Marlboro Light and scratched his full, tered on the floor. With craziness in his eyes he slurred, white beard. He held a bottle of Boone’s Farm wine, wore “I don’t need anybody.” But Santa was wrong. That boxer shorts, and sported a tank-top T-shirt that read night, the irate alcoholic invited Johnny Walker and “Bite Me!” under a small Budweiser logo. Jack Daniels over for a party in his belly. Recognizing himself, Santa wavered in shock as the As usual, the hefty, alcoholic sponge fell into an intoxi- ghost attempted to steady him. His face went sick and cated slumber. And, as usual, a ghost woke him up. “Ra, pale. ra, ra , ra, rise and sha, sha, shine, Harvey, I mean Santa,” the tall, skinny apparition stuttered. “I’m the ga, “Wha, wha, well, what did you expect? A wonderful ga, ga, ghost of Christmas Future.” life?” the ghost said.

“Can’t you ghosts just give me one silent night?” Santa Morning had arrived at its designated time as snow gen- tly floated past the window. The house was quiet except whined. for a mouse stirring...his coffee. And Santa was down for the count again, curled up under a sheet of wrapping “Wa, wa, wa, well, we, we could, but wa, wa, well, it paper. It looked like Christmas was going to take a wouldn’t be ra, ra, right, by golly,” the ghost replied. “time out” this year. “Alright, let’s get this crap over with,” moaned Santa, Suddenly, oh what a sight, Saint Nick sprang in the air reluctantly. like a Laker guard. He bulled his way through the furni- ture, and oh what a clatter! He ran to the window and “Le, le, le, let me see if I remember how to do this li, li, opened it wide. He called down to an elf who was carry- little effect,” the spirit said. The ghost held a cigarette ing a keg. “What day is it, my fine, short-statured up to his mouth and lit it. He began coughing out friend?” smoke. “Ga, ga, good stuff!” he wheezed, as the room became hazy. “Why it’s Christmas day, sir,” the elf answered. Santa’s lips quivered as tears flooded his eyes. The elf looked The two time travelers found themselves standing in a up and smiled. “I’m just yanking your chain, run-down trailer. Dirty dishes and a Confederate flag tubbo. It’s only Thanksgiving.” decorated the room. A small boy sat in the corner, weeping. “That poor little fella. Why’s he crying?” Santa “D’oh! Santa said, gritting his teeth. asked the ghost. “Why you little—”

But before the ghost could respond, voices from the “Hey,” the elf continued, “Why back room grew louder. “Whatta ya mean you spent don’t you grab a couple of your paycheck at the bar?” a woman screamed. “You bottles and come over to were supposed to buy Tiny Tom a Razor Scooter! That’s the factory. We’re having all he wanted for Christmas!”

ABILITY 9 a Macy’s Day Parade and we need a float.” “Well then, what’s everyone standing around for?” Santa yelled. “We’ve got toys to make!” Sobriety Santa slammed the window shut. “As God is my wit- instantly filled the air, sending the workers scurrying to ness, there will be a Christmas this year!” he vowed. their stations.

Santa tore open his closet doors. He ripped his red outfit The elves worked around the clock, cranking out toys off the hanger. With the strength of six Grinches, plus by the minute. Reindeers practiced take-offs, rooftop two, he sucked in his beer gut. He wiggled then jiggled landings, and built up their stamina for the arduous jour- ’til he could wiggle no more. He was getting in those ney. In his shed, Santa busily constructed a sleigh. Mrs. pants, that was for sure. Claus returned to gather some knickknacks she had left behind. (Like any woman, she had a fondness for knick- He waddled over to the bathroom sink, trimmed his knacks.) beard and cut his nails. (That’s right, Claus clipped his claws). Now it was time for business. He gathered every Unbeknownst to Santa, she was also carrying divorce ounce of liquor in the house and, sweating, flushed it all papers. When Santa saw his wife, he swept her up in her down the toilet. It felt good—then bad—then good arms and said “I love you, Mrs. Claus!” again. Some say Santa’s liver shrank ten sizes that day. She looked at his glowing puffy face and knew he was The reindeer and elves were partying and living la vida sober and that he meant every word. She smiled and loca when the door to the factory crashed inward. An said, “I love you, Santa Claus.” The jolly man twirled axe-wielding Santa announced in an eerie Nicholson her around and around until she threw up on his hat. voice, “Heeeere’s Kringle!” It was Christmas Eve and the elves had just finished “Look!” cried a drunk elf, “It’s the bearded drunk!” The packing up the sleigh and harnessing the reindeer. workers burst into laughter. Dressed in his gleaming red suit, Santa sat at the wheel. Mrs. Claus ran out of the house holding a tin of cookies “Ho, ho, hold it down my ‘faithful’ workers,” Santa and a fruitcake. “Wait!” she yelled. Santa climbed down calmly said. off the sleigh. “The doctor just called,” Mrs. Claus said.

“You’re the one who can hold it down!” Rudolph yelled. “Oh, no, no, no. Is my cholesterol count too high to fly?” Santa asked sadly. “Yeah, a whole gallon!” Herbie, the elf, added. “Your cholesterol level is fine and your blood pressure is Santa smiled and casually walked among the pint-size normal,” she beamed. “I’m pregnant!” party rebels. “It appears what we have here is a failure to communicate,” Claus remarked. “We’ve got some “Ho, ho, ho! It’s a Christmas miracle!” Santa exclaimed. toys to make. Now, we can do it the hard way or the He picked his wife up—but decided not to twirl her easy way. So, what’s it gonna be, ba, ba, boys?” around this time—and kissed her.

Squatty, the biggest of the elves (who towered at three- “Now you get going,” Mrs. Claus said as she handed feet-eight-inches), boldly stood up. “We don’t take him some treats. “Here’s some snicksnacks for your orders from drunks,” he snickered. ride.”

“Is that right?” Santa asked as he looked around the fac- Santa climbed back onto the sleigh and fastened his seat tory. Cocky, the elves and reindeer nodded in unison. belt. He lifted a Walkie-talkie to his mouth.” Flight four, six, niner, prepared for take off.” “Well, in that case, I think I’ll help myself to a frosty mug,” Santa said, seeming to surrender. An elf in the tower responded, “You have clearance, Claus.” Everyone raised their cups and cheered. The stout man leaned over the beer barrel, but instead of pouring him- With a tug of the reigns, the jolly man yelled, “On Dash- self a draft, Santa picked up the keg and crashed it over er, on Dancer, on....on...ah, you know your names.” the head of Squatty. The eyes of the big (tiny) elf rolled back in his head and he collapsed into a crate of Rudy Then up to the sky Toot Toots. the sleigh started to cruise. There would be a Christmas! A pine needle could be heard hitting the floor. “Anyone Now that St. Nick’s off booze. else?” Santa asked. “Ham on by Jeff Charlebois With eyes agape, everyone shook their heads in fright. a Roll”

10 ABILITY e’re in the middle of what is called “down During my non-racing season, I often do some auto- time” in women’s motocross. This means graph signings for some of my sponsors. T-Mobile, one Wwe’re done with our racing season and that I of my sponsors, recently sent me out to a communica- won’t start back up again until April, when I head on tions expo in Ontario, CA. It was pretty cool. Honda over to Europe to race in the women’s FIM racing brought my championship bike to set up and I got to series. As you might remember, I broke my collar bone sign autographs and meet new people. I have a few at the end of my season this year (and had to have friends out in Cali, so when I was done with the expo, I surgery) so this has also been my healing up time. got to hang out with some of them. We all went to Pole Position (which has really fast go-karts) and went While in Europe last season, I became very close with my through a few races. In a couple of weeks, I’ll be going mechanic and his family. My mechanic has two daughters to Washington, DC to sign some autographs at the open- who are both close to my age and we all became very ing of a new T-Mobile store. Red Bull will also be on good friends. We often talk on webcam and keep in touch hand there to pass out some free drinks. Pretty sweet! through emails and text messages. This week, I fly back out to California for the 2010 At the beginning of last year’s season, I told myself that Honda photo shoot. This is where we take all of our if I won the WMX championship, I would take a trip to media photos for the upcoming year and where photog- Belgium. Fortunately, I won the championship, so I raphers take the pictures they’ll use for the posters we booked my ticket and headed over to Belgium for 10 sign at all of the races. I’ll also be doing some interviews days! I happened to be there during Belguim’s “holi- out there and will get to meet up with my team again. day,” so every day we did something fun and exciting. I got to meet new people and try new foods and had some In other news, I went to the doctor last Monday and was great experiences. Everyone thought I was nuts to visit a finally cleared to start riding again because my collar different country even though I am deaf. But by the end bone has healed. Yeah! I rode once last week and will of my trip, I was speaking Dutch (the language of Bel- also get to ride while out in California at the photo gium) and my friends and their family members were all shoot. Then, once I get back home, it’ll be time to start signing! riding and training for my 2010 season.

Traveling overseas is pretty exciting and I didn’t have So, even though this is my “down time,” you can see any problems. In fact, the most stressful thing was there is still plenty going on. It may seem pretty crazy exchanging my American money for Euros. Belgium and hectic, but I wouldn’t trade my life or my career for also has the best chocolate ever! It’s so good, I brought anything. a ton of it back to America.

Next weekend, I plan to go skydiving for the first time! It is something I have always wanted to do and my friend Travis Pastrana (an extreme kind of guy) happens to be coming down here to Florida to get some skydiv- ing hours. Fortunately, he said I could come along, so I will be jumping tandem with a professional skydiver. Ashley (in hat), with Belgium friends, stands in I’m hoping I can also squeeze a few snowboarding trips front of her lucky number, 67. in between training, riding and skydiving. ashleyfiolek.com

ABILITY 11 an excerpt from

School of Public Communications at Syracuse University, Robinson has two decades of sales experience in media and has won numerous acco- lades as a top-billing account execu- tive. Married with three children, he enjoys being an “arms-on” dad, vol- unteering at his daughter’s school and coaching his younger son’s soccer team.

In his new memoir, Get Off Your Knees: A Story of Faith, Courage, and Determination, Robinson talks in a straightforward, personal voice about growing up with his disability. He shares the intimate details of his life and philosophy, including an early discovery that the best solutions of doctors and other experts often aren’t that helpful, and the awareness that his best resource is frequently his own ingenuity.

Recounting the humorous and the painful, the upbeat and the madden- ing, Robinson explores a common dialectic experienced by people living with a disability: the experience of being just like everybody else, but also not like anybody else, at the same time. FIRST IMPRESSIONS

here are a few things I’ve come to Taccept regarding my physical dis- ability: (1) I’m never again going to ride a roller coaster (once is enough), (2) I’ll never be taller than my children again, and (3) I’m going to make quite a first impression on people. In the latter case, I will do everything in my power to make you forget this initial impression. s the summer after high school graduation fades, You see, the most important skill I’ve acquired as a person incoming freshmen await the start of college with a disability is that I am keenly aware of my first Awith some universal questions: Am I choosing impression and how it might affect others. the right major? Can I handle the workload? Will I get along with my roommate? But for John Robinson, Generally, that first impression of me causes shock, determined to succeed in his first taste of living away awe, or surprise, and that’s not what I want people to from home, there was an important additional hurdle: remember. I want them to remember me for the person I can I learn to fasten my pants on my own before classes am on the inside, not just what they see on the outside. start in the fall? Fortunately, Robinson was able to solve It’s not easy to do, especially in the sales world, where first impressions are everything. But if I can get a poten- the dilemma with the help of a seamstress friend and tial client to put aside what I look like and at least think some variations on Velcro® fasteners. about who I am on the inside (educated, responsible, hardworking, funny, very knowledgeable about the TV Robinson was born a congenital amputee. His arms end industry), it’s ultimately to his benefit. at his elbows, without hands. His lower legs are attached to his hips, without knees, and he stands three- I have spent a lifetime trying to overcome and block out foot-nine as an adult. A graduate of the S.I. Newhouse

12 ABILITY people’s first impressions of me, but there have been away if he is a sports fan and get his take on the some memorable failures. In 1998 I flew to Norfolk, Oranges’ new football coach or their most recent bas- Virginia, to interview for a sales job with an NBC affili- ketball game. Maybe she has a Cleveland Browns ban- ate. The sales manager was to pick me up at the airport, ner on her wall, in which case I’ll make sure to poke fun but had no idea what I looked like, other than that I at her for my Pittsburgh Steelers’ most recent demoli- would be wearing a shirt and tie. I chose not to reveal tion of her team. What you can’t do is have a negative my physical disability to him beforehand because I did- reaction or no reaction at all, because it will just make n’t think I had to; after all, would someone who is the person feel even more uncomfortable. In the sales African-American be expected to tell a potential world, you have to put the client at ease, and humor is employer she is black? one way to break the ice and get the client to engage you in conversation. Usually, people are so surprised by When I arrived at the airport, the guy walked right past how I look that they immediately let their guards down me. I knew it was him, and I was certain he knew who I and become more curious about me. Once I get them was because we were the only two people at the airport interested in me, then I have the opening I need to start dressed for business. I chased him down and said, “Are talking about them and what their needs are. you looking for John Robinson? I’m John.” He immedi- ately did a double take. There was an uncomfortable There are two kinds of reactions I see when people silence, and I could see that he was embarrassed. The first get a look at me: either they’re surprised and embar- interview might as well have ended right there, because rassed and just want to get on with business, or they I could tell by his reaction he was uncomfortable with smile right through, at which point we both can laugh a me, and I didn’t want to work with someone who was little bit. I have to read people and see how uncomfort- more concerned with how I looked than whether I was a able they are through their initial reactions toward me. good salesperson. I did learn a few valuable lessons One thing that has helped is my interaction with kids. from this experience, however. From that point on, I When kids meet me, they have the most unfi ltered reac- made sure to tell people in advance about my outward tions: “Why do you look so funny?” “Why are you so appearance, even though I didn’t think it was necessary short?” Where are your hands?” Kids will say anything, or appropriate. The experience taught me that I should whereas their parents will bite their tongues. Parents be comfortable enough to say, “Hey, I have a physical might think these questions privately, but they’ve been disability, and you should know it.” Invariably, what taught not to speak them. Some kids addressing me have happens is the potential employer or client says it does- embarrassed their parents to the point that they are n’t matter, but whether it does or it does not, at least he pulled away from me or, even worse, screamed at! I knows. It shouldn’t be important, but to an older genera- immediately tell the parents that questions are okay. Kids tion that may be less accepting or educated about these see eye to eye with me, so they can’t understand why physical differences, it might be. their parents would get angry at them. Their reactions are normal and honest, and they probably reflect the same That point brings me to the second lesson: it is my response adults have toward me. Let’s face it, when a responsibility to come prepared for whatever reaction child sees me in the grocery store and says, “See, that people have toward me. If I can sense someone is guy has no hands,” she is right. uneasy, I’ve got to do my best in those first few minutes to make him feel more comfortable. The unfortunate Learning how to deal with children has helped me better part about the Norfolk experience was that I wasn’t con- manage my first impressions with adults. I answer the cerned at all about first impressions or what I’d say dur- kids’ questions, make light of the fact that I am differ- ing the interview process. I was supremely confident I ent, and try to be as positive as possible. It’s the same could do the job. I was more worried about getting on thing I do with adults. That doesn’t mean I’m and off the plane, how I was going to carry my bag, and always perfect. My wife, Andrea, likes to remind me whether I could find a suitable bathroom to use at the that in one very angry moment I said to an especially airport. It never crossed my mind that the sales manager obnoxious child, “It’s because I didn’t eat my vegeta- might have a problem with my appearance. I wasn’t bles.” That one had the child’s parents laughing while ready for that kind of response, nor was I capable of he cringed. It was one of my better jokes, but it’s one defusing the situation. that I try to keep under wraps now.

It’s not easy to make people forget their first impres- Once I get beyond the initial first impression, I still sions of you when you stand less than four feet tall and have to make a sale. I have to sell my abilities to the when they can’t see you when you’re standing on the potential employer or client and convince him that I do other side of their desks. To overcome that obstacle, I have something to offer his business. Before I got my fi try to get them to talk about themselves as quickly as rst sales job with WSTM-NBC3 in Syracuse in 1994, I possible, which shifts the attention away from me. I interviewed with about twenty other stations. I had the might try to interject a little humor or find some com- degree and the know-how to get any one of those jobs, mon ground with that person. For example, if I see that but I didn’t have enough job experience for it to be the he has a Syracuse diploma on his wall, I’ll find out right tipping point. They could all cite my lack of experience

ABILITY 13 for not hiring me, although I’m sure if I were able-bod- Of course, if you are a person with a disability, the first ied I would have landed one of them. impression can work either for or against you. I said earlier that one advantage to being as short and funny- Eventually, what it came down to at WSTM is that I real- looking as I am is that I am memorable. People are ly wanted to sell for them and I found somebody I could always going to remember me for how I look. And in connect with, someone who looked beyond my appear- my business, where first impressions are critical, that ance and bought into the fact that I was a viable candi- fact is a huge plus. There’s a reason pharmaceutical date. Still, even after I told the sales manager I’d work companies hire young, attractive people (mostly for the station at 100 percent commission, he had to con- women) in sales: they want you to remember who’s vince his boss that I was someone worthy of hiring. doing the selling. If a TV station has a sales staff of eight people, you can bet at least two of them will turn a His boss’s chief concern was, “How do we fire this guy if few heads. It’s part of the world we live in. it doesn’t work out?” Fortunately, they gambled on me. Look at some of the advertisements you see on televi- I had all of the things they needed in a salesperson: sion. You’ve got these local car dealerships screaming I was eager to work, I was willing to make sales calls, I into your sets, trying to set themselves apart from their was memorable (more on that subject later), and I could competition with the loudest, most outrageous promo- talk about television as a product. During the interview, tion they can come up with. Why? Because it’s memo- the sales manager who hired me, Bob Eckel, said, “Sell rable! Readers in the New York metropolitan area prob- me this coffee mug.” Instead of saying, “Here’s a ably remember those Crazy Eddie electronic-store ads mug—it’s white and it’s durable,” I said, “Here’s some- from the 1970s and ‘80s with the frenetic lead character thing that will get your morning off to a great start.” It screaming, “His prices are insane!” Those ads were was exactly what he wanted to hear because he didn’t widely popular and helped the chain earn more than 300 want me selling the mug; he wanted me selling the cof- million dollars in sales. fee that was in the mug. That’s what all owners want. They advertise with you because they want more The television industry is no different from the real patrons to walk into their stores or places of business. world: we’re all trying to stand out and be noticed. If They don’t care as much about the actual advertisement you’re dating someone new, what do you do? You wear as they do about the number of people who see it. your best clothes, look nice, and try to smell good. It’s your way of marketing your best qualities by highlight- I was willing to accept WSTM’s offer of a 100 percent ing your differences. In the sales world, my physical commission job with no existing accounts because I disability is what allows me to set myself apart from my believed in myself enough that if someone were willing peers. My disability is louder than any commercial or to take a chance on me, I’d take a chance on him. Some- gimmick. But once I have the recognition, I still must times you have to make some concessions in order to provide substance. Just like the attractive salesperson get what you want; the payoff will come later. It’s all with the million-dollar smile, I’ve got to be able to back about looking at obstacles as opportunities. Put yourself it up. I can’t just go in there looking the way I do and in the shoes of the employer and ask yourself, “Why do say, “Listen to me.” I have to say, “I’m John Robinson. I take a chance on you?” In today’s economic climate, I’m here to talk to you about something specific to your there are a lot of people looking for work and not a lot business, and here’s why you need to listen to me. I can of jobs to be had. The demand far outweighs the supply. help grow your business. I can drive traffic to your If you have a physical disability, the odds are stacked store. I can enhance your image in the community.” even more heavily against you. Seventy percent of all people with disabilities are unemployed! I have to produce that much more, because as the earlier example from Norfolk shows, being memorable isn’t If you are among that 70 percent, or if you’re part of the always a one-way ticket to the promised land. Whether growing national unemployment rate, keep plugging you’re a person with a disability like me or a war veter- away. If you get an interview, make the best first impres- an, burn victim, or short in stature, that first impression sion possible under the circumstances. Don’t walk in there is something you have to nail. It can be an opportunity with a defeatist attitude or a “the world owes you” attitude. for you, but only if you’re keenly aware of how that first Tell the employer what you have to offer and why you can encounter may affect other people. You must be pre- make a difference for him. If you’re a wounded veteran pared to show them that you’re much more than just coming back from Iraq without an arm or leg, you need to what they see on the outside, or on a piece of paper. think about what you have to offer society, not what you Find out what it is you have to offer, whether it’s a job can’t do. You have the kind of technical training and dis- you’re seeking or a relationship you’re trying to further cipline that few other people have; you matter to some along and, like the maniac in the Crazy Eddie commer- employer. Conveying that idea to the person sitting across cials, be passionate. the table or desk from you is all that really matters. It’s how you get someone to forget that awkward first syracuseuniversitypress.syr.edu impression.

14 ABILITY ABILITY 15 akotah Smith had heard the traditional cries of to be able to be a role model for other kids who may be doubt. “You can’t play. You’re a girl. Girls don’t facing similar challenges in their lives. Dplay sports like soccer.” “I want them to understand that having a disability But those archaic statements never shook Smith’s deter- doesn’t have to hold you back from anything,” Smith mination—she had already faced more difficult doubts. said. “You only let it hold you back as much as you Her desire to compete, to win, and to be part of a team want it to. You can do anything that you want to do.” trumped all the questions anybody ever had. So she went out for a soccer team, and she made it. But Smith says she didn’t really set out to find power soccer. It found her. “One of the boys on my team, Tiawan, we grew up at a summer camp together,” Smith said. “When I used to Smith started using a wheelchair at age five, often when want to play sports with the boys, I always heard, ‘But she was tired or was traveling long distances. By age 11, you’re a girl’. Playing on a team with Tiawan, we’re so she had moved to full-time use, and today she uses a competitive at such a high level that my role has power wheelchair. While attending a yearly summer changed from the nice, feminine, girly type who didn’t camp for young adults with muscular dystrophy, Smith want to get hit. Now I can be the most aggressive one met and befriended Tiawan Britto. on the team.” During the summer of 2002, some special guests came Smith, who has muscular distrophy, believes it wasn’t to speak at Smith and Britto’s camp. The guests, who until she started playing power soccer that she discov- were representatives from Atlanta’s Shepherd Center ered she had a strong desire for competition. “That defi- rehabilitation hospital, told the camp’s students about nitely came from soccer,” she said. “When I was a kid, power soccer and mentioned that the Shepherd Center’s there wasn’t anything for me to be competitive with. soccer team (the Shepherd Strikers) were in search of But when I would see able-bodied kids playing soccer, people to join and play. To gear up interest, an exhibi- it made me jealous that I couldn’t play. Finding this was tion was held in which campers were invited to learn the really cool.” game. Smith, despite some hesitation, hit the court.

Today Smith plays for the Atlanta Synergy power soc- “One of my childhood friends kind of forced me to try cer team, competing in tournaments across the country it,” Smith said. “I didn’t really want to. I had never seen and proving wrong those who thought a girl in a wheel- a sport specifically for people with disabilities, so I was chair couldn’t play soccer. She says she feels privileged like, ah, that’s probably not that cool. But I tried it, and I

16 ABILITY loved it. I went out for the team right after that and I’ve “We had like five or six training camps for the year and been playing ever since.” a half leading up to the World Cup,” Smith said. “We got to go to Minnesota, Las Vegas, San Francisco and According to the United States Power Soccer Associa- all these places to train. Going to Japan was amazing. tion, power soccer combines the skill of the wheelchair The level of competition there was unreal.” user with the speed and power of the chair itself to gen- erate a game similar to soccer. The sport is played in a In a tense shootout, Team USA beat Japan for the Cup. gym on a regulation basketball court and features two With her Atlanta teammates, Smith also took a trip to teams of four players each. Players must attack, defend the sport’s homeland of France to pick up some new and spin-kick a 13-inch soccer ball to score goals. The competition wheelchairs. While there, she played a players’ wheelchairs are equipped with guards in front few exhibition games against some of the local teams. of the players’ feet, which are used to direct the ball during play—and to protect players when the intensity “Our style mimics how they play,” said Smith, who was of the game increases. recently moved into a striker position for her team in order to be more aggressive on the court. “Everybody “I think as soon as someone puts that guard on the plays how the French play, with the passing and how front of their chair, it changes everything,” Smith said. fast the game is. We learned a lot from them.” “As soon as you realize that you’re doing something completely independently, it changes your perception, It seems teams in North America have also learned a and you start to understand that this isn’t just a sport lot from Atlanta. The Synergy has transformed into that you just play around with. For me, the change was one of the premier power soccer teams this side of the almost instantaneous.” ocean, proving its worth when it played in the inau- gural Americas Champions Cup in October in Suwa- Power soccer (which is referred to internationally as nee, GA. Smith and her teammates claimed the title “power football”) began in France in the 1970s and with a 4-0 victory over the Circle City Rollers, the moved into the United States during the 1980s. As more team to whom they lost in July in the United States countries began to play the sport, rules and strategies Power Soccer Association National Championship began to vary. In 2005, six national organizations met in Tournament finals. Paris and agreed to form the Federation International de Powerchair Football Association (FIPFA) as the interna- The America’s Champions Cup was organized by tional governing body of the sport. FIPFA and teams from the U.S. Power Soccer Associa- tion and Powerchair Football Canada. It offered eight By then, Smith’s skill had increased and her team had sep- teams a chance to gain international playing experience, arated from the Shepherd Center to compete—and to providing them with solid preparation for the 2011 Pow- raise money—independently. They became the Atlanta erchair Football World Cup, which is still up for bid Synergy, and have since traveled to Arizona, Indiana, between potential host nations United States and France. and across the South to compete in tournaments. The wide spread of the sport’s tournament sites is a clear Whether the World Cup is to be in the U.S. or in the indicator of its increasing popularity across the country. sport’s homeland, Smith hopes to be in attendance as a representative for her country. And if she’s not, she “We have received inquiries from several states interest- knows that others can carry the torch for her. Whether ed in starting a program,” said Dominic Russo, presi- a girl happens to be carrying that torch or not makes dent of the U.S. Power Soccer Association, in a letter on no difference to Smith. the organization’s website. “We are reaching not only our target goal of growing within the U.S. but also “I see younger kids who have never been a part of throughout our continent.” something like this and haven’t actively participated in things,” Smith said. “I love to show kids that this is In a recent survey by FIPFA of ten national organiza- something you can do without anybody’s help. Nobody tions across the globe, it was revealed that more than can hold you back. Nobody can tell you that you can’t 3,500 people play power soccer, with 600 of those ath- do it.” letes participating in the United States. France leads all countries in adoption of the sport with 1,100 players. by Josh Pate

In 2007, Smith and her teammate Eddie McGuire were FIPFA selected to compete for Team USA in the first World fipfa.org Cup for power soccer in Japan. Jerome Durand, also a United States Power Soccer Association Synergy player, represented France. Smith notes that, powersoccerusa.net even in her role as a team alternate, the experience was unforgettable. Atlanta Synergy atlantasynergy.com

ABILITY 17 Photos by: Nancy Villere - CrushPhotoStudios.com Photos by: Nancy Villere

hile driving home from a long day at the where I worked as an attorney. The ADA is a civil rights office, ABILITY Magazine’s Chet Cooper hap- movement, so I do feel a connection. Wpened upon a National Public Radio (NPR) interview with a woman named Alia Malek, author of A I think it’s really all about paradigm shifting, really. Country Called Amreeka. In her interview, Malek What you guys are doing with your magazine is what I described her book as featuring a cross-section of Arab- tried to do with my book. I don’t want to hear about Americans in an effort to challenge stereotype, foster Arab-Americans every time, only in reaction to when cross-cultural understanding and respect, and to provide situations happen. I’m really more interested in writing insight into what it means to be an Arab-American today. about American society as a whole. If American histo- ry is truly a mosaic, then there are still many tiles that The NPR interview ended with a mention that Malek are missing. We don’t fully understand the experiences would be visiting Southern California the following or the history of other people who are as American as week, prompting Cooper to wonder if Malek’s interest we are. And that’s why we don’t have a fully clear pic- in civil rights would translate into a compelling inter- ture of who we are as a country. That’s why you have view for ABILITY Magazine. people saying stuff like, “What happened to our coun- try? How could this happen in our country? Where is It did. Malek and Cooper chatted over malts at the the America I know?” Some are still trying to under- scenic Shake Shack along the Pacific Coast Highway stand how we can have a black President. It’s only near Newport Beach, discussing the past, present and because many people have no idea who Americans future of civil right movements in America. really are.

Chet Cooper: Obviously your work has a lot to do with Cooper: How did you tackle this sort of thing in your stereotypes and with cultural awareness. Do you see a book? connection with the American with Disabilities Act (ADA) and any of the work you’ve done? Malek: My book actually starts with the events in Birm- ingham, Alabama, in ’63. The bombing of the 16th Alia Malek: I do. The ADA is enforced by the civil Street Baptist Church is what triggered the passage of rights division of the Department of Justice, which is the civil rights law, the Voting Rights Act of 1965. So

18 ABILITY the book opens with a prologue that tries to make tangible how differ- ent America and Amreeka were before these legislative shifts really changed America forever.

These changes aren’t oriented to disability rights, specifically, but the civil rights struggle was certainly a starting point in many ways. Barack Hussein Obama would not have been elected if we had not had the Civil Rights Act of ’64, the Voting Rights Act of ’65, and the Immigration Act of ’65. These are what truly reshaped both American dynamics and American power. The Supreme Court decided in favor of Brown in the Brown vs. Board of Education case of 1954 and that’s when segregation was finally held to be unconstitutional. But in 1963 segregation was alive and well and Martin Luther King was trying to get President Kennedy to pass a real federal civil rights law and to put some federal power behind immigration.

The first wave of Arab immigration to the US, from the late 1800s to 1924, was primarily Christian. After 1965, however, once immigration to the US started up again, most of it was Muslim. Today the majority of Americans of Arab descent are Christian.

Cooper: Did you interview any people for your book who have disabilities?

Malek: It’s funny, but Maysoon Zayid was almost a character in my book. Maysoon is a comedienne and actress who was in the movie You Don’t Mess with the Zohan. She founded a home and a rehab center for kids with different disabilities and uses humor as a form of therapy.

Cooper: And that rehab center is in Palestine?

Malek: Yes, it’s on the West Bank.

Cooper: Do you know what part Maysoon played in the Zohan movie?

Malek: I didn’t see the movie, but I think it was a small part. Hers is a pretty cool personal story.

There’s also a guy with obsessive-compulsive disorder (OCD) in my book. He’s in the Oklahoma City chapter, which is called “Coming Out.” It’s about a man coming out as both gay and Arab, just across the border from Oklahoma City in Kansas.

Cooper: And his concern is the backlash?

Malek: Yes. In the chapter, he’s trying to become an American in the early ’90s, when homosexuality was still seen as being like a disease. That kind of fed into his OCD, because he was obsessed that the gov- ernment was going to find out he was gay. So he wouldn’t stay in hotels with other men, he would only meet them in bars. And he wouldn’t even go out in the city he lived in—he would drive, like, eight hours to go somewhere else. It all kind of fed into his paranoia.

But today the civil rights statutes have expanded and, even though they’re sort of born out of the African-American experience, they’ve since broadened to include new groups. Disability constituencies are among the newer groups to come under the purview of civil rights groups, and eventually gay people will be also, whether society is ready for it or not. Cooper: How many times have you been to the West Bank? You’re human just like anyone else, and you can have mental health problems just like anyone else can. But Malek: I’ve lived and worked there three times, and I that message isn’t exactly getting out there. went one other time just for fun. Malek: One of my friends is a correspondent for the Cooper: For fun? Military Times and is an expert on a lot of health issues. I went on her Facebook page after the Fort Hood situa- Malek: (laughs) Well, no, I guess not just for fun. I took tion, because she’s friends with a ton of soldiers, and I a bunch of Student Nonviolent Coordinating Committee was going to see what people had written and if there members with me. They’re like Freedom Riders. was a lot of racism being thrown around. Instead, there were just a lot of people saying, “We come back from Cooper: In your travels between Palestine and the United the service and we don’t get any kind of real mental States, do you see any differences between the societal health help.” I think people who are familiar with that and governmental treatment of people with disabilities? kind of situation recognized this whole Fort Hood inci- dent was a mental health issue. Malek: Yeah, I mean, the acceptance of mental health issues and of people who have disabilities is never really I can think of, within the last two years, two other ser- the first thing that a society does in its evolution. In these vice people who have gone on shooting rampages. marginalized and disempowered societies there are so Something had cracked within them. And we didn’t sit many people suffering, particularly from mental health there and wonder if this had anything to do with Chris- problems and disabilities. A lot of people have been shot tianity or with being white. So, at the core of this, we’re or injured somehow. So yes, you see that in Palestine and really diluting a conversation that does need to happen. you see that in Lebanon. Attitudes about disability and Why are our service people not getting what they need? mental health issues need to evolve in any society, just as they need to evolve in Arab-American communities. Cooper: I know a public relations person out of Camp Pendleton who is actually working on a program to fur- Sometimes if a community isn’t politically mobilized ther the awareness of the need for peer-to-peer counsel- to get a president elected or to get a foreign policy ing, focusing on what’s happening with suicides among changed, it’s going to put a lot of these issues on the these soldiers. The numbers are really staggering. back burner, particularly in respect to mental health and disability rights. But I just met a woman yesterday Malek: They are staggering. And publicly we don’t who is getting her degree in marriage therapy with an know enough about that. interest in treating mental health in the Arab-American community. Cooper: We looked recently at whether there is a rela- tionship between motorcycle accidents and post-trau- matic stress disorder. A lot of people who serve in the Cooper: And her thought is that, because of accultura- military come back, buy a bike, and crash before they tion, there’s a difference between— even get home. These military servicemen and service- women are coming out of conflict, looking to recapture Malek: Well, there’s still a stigma associated with hav- some adrenaline, they get up to this high speed on their ing mental health issues and getting treatment, particu- bikes, and then they crash and die. They’re not trying to larly. That attitude prevents a lot of people from getting commit suicide, but they’re also not really aware of the help that they need. what they’re doing.

Cooper: What are your thoughts about the shooting in Malek: Wow. You know, the last story in my book is Fort Hood, with respect to mental illness? about a soldier. We go out to war alongside a Yemeni- American Marine, and we live it very viscerally with Malek: I think it’s clearly a mental health issue, no mat- him. But the whole point of the book, and of these con- ter what anyone else has wrapped it up in. If this guy versations, is that we’ve got to normalize and make has wrapped it up in religious extremism or whatever, familiar these largely unfamiliar people and experi- fundamentally, it remains a mental health issue. It’s not ences. It’s about making visible the stories, the lives, a cultural or religious determination. But that’s not how and the history of a people that are invisible. they’re talking about it on the news. It’s pathetic.

Cooper: A psychiatrist who works with our magazine said that when you become a psychiatrist, they don’t give you a vaccination for your own mental health.

Malek: You’re supposed to be in therapy yourself, though.

Cooper: Continually, sure, but there’s no vaccination. acountrycalledamreeka.com 20 ABILITY ABILITY 21 Learning disabilities are tragic in children, especial- ly when they go undetected. They are no less trag- ic in organizations, where they also go largely undetected. The first step in curing them is to begin to identify the seven learning disabilities.

My hopefulness was shot. The book’s relation between an organization and a learning disabil- ity had nothing to do with finding new ways to make businesses work more efficiently. It had nothing to do with adapting workplace strate- gies—instead, it merely embraced a disparag- ing view of disability.

The book continually referred to errors and wrong-doings and detriments in an organiza- tion: the “learning disabilities” of a business. And though much of the book’s content may have been useful, innovative and thought-pro- voking, the fact that derogatory references were made about our community tainted my perception of the author’s methodologies. Senge had demonstrated a lack of respect—a lack of awareness of disability and disability culture—through his choice to assume negative value of people with learning disabilities.

As might have been expected, my workshop assignment was to write a paper addressing topics covered in the course. But I could not bring myself to use a reference like organiza- tional “learning disabilities.” Instead, I includ- ed the following footnote in my report:

As a disability rights activist, I advocate on a daily basis for the reference of disability not to be used in the context selected by Peter M. Senge. He specifi- cally notes, for example, that: “Learning disabilities are tragic in children. They are no less tragic in recently participated in a workshop about organiza- organizations. The first step in curing them is to begin to iden- tional development. Everything about the learning tify the seven learning disabilities.” These “seven learning dis- Ienvironment seemed perfect: the class was small, the abilities” are obviously labeled as such because they are seen agenda looked interesting, and the presenter was engag- as significant infringements on the productivity of an organiza- ing. I was ready to learn. tion. However, linking a lack of productivity or a professional error to the term “disability” in a demoralizing fashion such as We were asked to purchase two books for the course. this is something that I cannot support, based on my personal One was titled, The Fifth Discipline: The Art and Prac- moral code and professional obligation. Therefore, Senge’s tice of the Learning Organization, by Peter M. Senge. seven “learning disabilities” will be referred to in this review as At a glance, it seemed informative. “methods of error.” For reference to, and justification for, this standing, please refer to Respectful Disability Language, But remember what your grandpa always taught you: www.nyln.org/Clearinghouse/Documents/Language%20Doc.pdf. Don’t judge a book by its cover. Though I had simply included this footnote in my paper This particular book’s second chapter was titled: for my own moral well-being, I found that something “Does Your Organization Have A Learning Disabili- amazing happened as a result of my decision. After ty?” The words made me cringe. Still, I was a little exchanging essays with a classmate for proofreading, I intrigued. How would this chapter play out? How was found the following footnote in my classmate’s work: the author going to link learning disabilities to the state of an organization? I decided to read on. After a conversation with our colleague Betsy Valnes, and after examination of her organization’s esteemed work, I feel

22 ABILITY strongly that Peter M. Senge’s use of the term “learning dis- those wonderful “Ah-ha” moments, recognizing the ability” to describe organizational weakness is inappropriate error of his decision to publish something repulsive? and harmful and, as such, I will refrain from using it in this paper. In its stead I will use the term “methods of error,” for I hope so. Because these instances of prejudice are which I would like to credit Betsy Valnes. unfortunately not uncommon. Numerous skilled profes- sionals and public experts know little to nothing about I had not expected this. I had not expected others to get disability culture and disability pride. They remain fool- on board with the choice I had made. I had merely ish, uninformed and unchallenged, using disparaging included the notation in my paper to ease my own con- language about disability without a second thought. science—and yet, somehow, one little footnote had pro- moted a stand to be taken by a fellow professional, We as a community still have a lot of work to do. We someone who had embraced the importance of universal must strengthen the unity of our disability family, respect, even though she doesn’t work directly in or embracing our allies who may not themselves have dis- with the disability movement. My classmate had written abilities, but who still stand beside us in what we aim to those words simply because she knew them to be right. achieve. We must maintain a sharp awareness of how She had stood beside me and, as an ally, she had we are perceived around the world and always remem- embraced a piece of disability culture and had provided ber that bringing us all together is what creates “the real evidence that the roles of allies in our movement are reality.” Today’s reality only confirms that our work is essential. far from over.

I decided to write the author and publisher of The Fifth by Betsy Valnes Discipline, sharing my frustrations and noting what a pity it was that such a useful book had made such an Betsy Valnes is an active member of the disability movement in the US offensive comparison. I noted that such decisions can and abroad. She serves as executive director of the National Youth Leadership Network, a non-profit organization run by and for young peo- alienate an entire class of readership. I also included a ple with disabilities. An adaptation of this article was published in the fall copy of the Disability Respectability Language docu- newsletter of the National Youth Leadership Network. ment and asked for consideration to be demonstrated in future publications of Senge’s book. Will it happen? nyln.org Who knows. Will the writer or publisher have one of

ABILITY 23 24 ABILITY Photos by: Nancy Villere - CrushPhotoStudios.com Photos by: Nancy Villere

ike a lot of children of the ‘80s and ‘90s, I spent a lot of time in front of a television in my formative years. Somewhere in my mother’s house are stacks of videotapes of Looney Tunes, Seinfeld and Quantum Leap Lepisodes that I watched again and again until their images started to fade. And I’m pretty sure I was the only ten-year-old on my block to dress as Lieutenant Columbo for Halloween.

But in all of my boob-tube-watching childhood, I rarely, if ever, saw anyone like me on television: someone with a physical disability. While I may have subconsciously measured my young self-image against the Kevin Arnolds and the Theo Huxtables (and yes, even the Steve Urkels) that I saw on screen, I knew intuitively that those guys weren’t exactly living life quite the way I was living it. They stressed about acne and homework, sure, but they didn’t have the unique concerns or self-doubts of an adolescent with a noticeable physical limitation. They didn’t use crutches or a wheelchair every day.

Thankfully, visibility for most minority groups has dramatically elevated since the early years of my childhood. Entire networks are now ostensibly constructed around advancement of minority images in television. Celebrities like Bernie Mac, Ellen DeGeneres, George Lopez and others have brought their unique voices and perspectives—and, by extension, more diverse audiences—to the television marketplace. And yet, it’s still a very rare occasion when I see someone like myself in narrative media. Try to name five characters or personalities with a disability on television today and you’ll recognize we remain the minority that even most diversity-oriented programming tends to overlook.

ABILITY 25 perception of the new generation of children with dis- abilities—children who, just as I did, continue to search for genuine reflections of themselves in a media that still doesn’t truly see them.

The forum, moderated by author Allen Rucker, boasted an impressive panel of industry talent including David Milch (creator of Deadwood and NYPD Blue), Daryll “Chill” Mitchell (star of FOX’s Brothers), and Margaret Nagle (writer of HBO’s Warm Springs), among others. Discussion topics ranged from the nature of the creative process to the numerous challenges of breaking into the film and television industry with a physical disability.

Actor Robert David Hall, best known for his recurring role on CSI: Crime Scene Investigation, served as mas- ter of ceremonies for the event, emphasizing inclusion, accuracy, and access for characters and performers with disabilities. “We’re looking for our opportunities to be seen and heard,” Hall said. “To be cut out of mainstream TV, movies and advertising stinks, and we’re trying to change that.” Hall, who serves as the national chair of the Performers with Disabilities Tri- Union committee, walks on two prosthetic limbs as the result of a car accident in 1978. “It’s crucial for all of us—actors, writers, directors, producers, casting associates—to come together to create solutions. They won’t happen without us.”

But arriving at solutions is difficult when the nature of a problem is still not fully understood or acknowl- edged. Even as an avid television viewer with cerebral palsy, I was surprised to learn that although 20 percent of people in America have a disability, only one-half of one percent of words spoken on television are spo- Actors Michael D’Amore (left) ken by a person with a disability. According to the and Robert David Hall chat forum’s keynote speaker Peter Farrelly, this imbalance between workshops between representation and reality is self-sustaining, as the lack of people with disabilities in our omnipresent So it was with something of a personal curiosity and media culture keeps that demographic “pretty much excitement that I attended the 2009 Hollywood Disabili- invisible” to storytellers, casting directors, and other ties Forum, held in October at the UCLA School of industry professionals. Theater, Film and Television. As a graduate of the UCLA screenwriting program, and as a writer with a “Unless a role is designated as being somebody with a physical disability, I am aware that events like this one disability, the truth is, casting is just not seeing you,” will prove vital not only in respect to my own career, Farrelly said. “No screenplay says ‘Amanda, the girl- but also in helping to shape the self-image and social friend, walks in the room and has perfect hearing,’

26 ABILITY but that’s who they’re thinking of when they’re brothel, countered Hirsch’s stance by questioning its putting the movie together because that’s what they’ve exclusivity. “I’m not interested in blackballing actors,” seen before.” Milch said. “It’s a dangerous position to take. I’m not going to hire to meet a quota. Let’s focus on making Farrelly—who, with his brother Bobby, created hit more opportunities, not fewer, here.” comedies There’s Something About Mary, Shallow Hal and Stuck on You—has included people with disabilities The collision of these two perspectives sparked in the majority of his films, in hopes of changing what thoughtful debate at the forum, drawing feedback from has become normalized in global media. “It’s going to audience members and panelists alike. One actress in be a gradual change,” Farrelly said, likening the social attendance expressed that film and television “didn’t bias against people with disabilities to that against need any more Daniel Day-Lewises,” referencing the women in traditionally male professions. “My mother actor’s Oscar-winning turn as Christy Brown in My Left was a great nurse who should’ve been a doctor. Today Foot. Actor RJ Mitte, who holds a supporting role on she’d be a doctor. Progress happens.” the popular series Breaking Bad, found a measured middle ground, offering that “the perfect role is out But some members of the panel expressed concern that there for everybody, it’s just important to be ready the very progress they’re hungry for is too often imped- when it comes.” ed by the casting of able-bodied actors to play charac- ters with disabilities. Television writer-producer Janis Though debates like these provide no easy answers, Hirsch, who works closely with Mitchell on Brothers, simply attending this event proved to be an eye-opener argued that roles for characters with disabilities should for me. I left the forum infused with hope and a new be played by actors with disabilities because there is no sense of perspective, recognizing that perhaps elevating shortage of available talent in the audition pool. Hirsch representation of characters with disabilities truly is a cited a recent episode of Curb Your Enthusiasm as rep- social cause akin to those of so many other minority resentative of what is often a hurdle for the advance- groups of previous years. As a writer, media junkie, and ment of actors with disabilities. hopeful participant in the future of the film and televi- sion, I was gratified to witness so many people of intel- “The episode had two characters in wheelchairs, played lect and passion discussing something I had grown up by women without disabilities,” Hirsch said. “I’m sure only subconsciously recognizing: if we don’t work to they’re lovely women, but they’re dead to me. It’s not get ourselves reflected in the media, who will? like there weren’t other talented options out there.” by David Radcliff Milch, whose HBO series Deadwood featured a woman with cerebral palsy in a 19th-century South Dakota iampwd.org

ABILITY 27 ultiple sclerosis (MS) is one of more than 80 Fortunately, new medications are available for treatment diseases known as autoimmune disorders. of MS. Some feature exciting characteristics, like capac- MOther notable autoimmune disorders include ity for oral administration and a profound impact on the Systemic Lupus Erythematosis (“lupus” or “SLE”) and symptoms of the disease. Copaxone®, or glatiramer Rheumatoid Arthritis (RA). These diseases operate by acetate, is one such medication. It has even been specu- “confusing” a person’s immune system and attacking lated that these drugs may prove beneficial in treatment healthy cells within the body. of other conditions that affect myelin-producing cells, such as spinal cord injury. Much of the destruction of Treatment of autoimmune disorders is tricky, particular- myelin-producing cells after a spinal cord injury is due ly since the human immune system is among the least to inflammation (an immune system response) common- understood of all systems in the body. Aiding a patient ly associated with traumatic injury. with an autoimmune disorder requires suppressing his immune system to diminish attacks against his body’s It is not too surprising, then, that scientists have cells. Too much suppression of the immune system, hypothesized that drugs like Copaxone could be useful however, can allow other diseases to flourish. A wide for spinal cord injury patients—a theory they have variety of medications, new and old, are used to treat tested by introducing the drug to mice. With a team of autoimmune diseases, and are often administered in colleagues, V. Wee Yong, MD, Professor in the Depart- combination with one another. All of these medications ments of Clinical Neurosciences and Oncology at The suppress some aspect of a patient’s immunity. University of Calgary, published results of just such experimentation in The Proceedings of the National The ideal medication option for treatment of autoim- Academy of Sciences. In their study, Yong and his mune disorder would suppress only that part of the team of researchers found that the myelin cells that are patient’s immune system that is attacking the particular attacked in cases of MS grew better in injured mice cell type in question. Unfortunately, no such treatment is that were treated with Copaxone than they did in a presently available to the population at large. New drugs control group of injured mice that did not receive such tend to be either experimental or expensive, making treatment. these sorts of treatment options difficult to access. Young’s research illustrates that Capaxone demonstrates In cases of MS, the immune system attacks cells that an ability to temper damage to myelin cells caused by produce myelin, a fatty substance that wraps around inflammation, a medical discovery which could prove nerves in the brain and spinal cord. Myelin functions beneficial to a wide spread of patients confronted with similarly to insulation on an electrical wire—when it is spinal cord injury and MS. Such discoveries are the tiny destroyed, nerves are seriously affected. (Don’t try to “steps for man” (or mouse) that slowly lead to “giant investigate this comparison by stripping the insulation leaps for mankind.” Though most of these tiny steps are on the wires in your house!) rarely reported on by news media, they occur in scientif- ic study all of the time. MS attacks come and go, but in general, the disease is a progressive one. Full recovery from an attack is rare and Though such developments in science may seem severity of attacks is variable from instance to instance promising, it remains very important to keep these and from patient to patient, as different areas of the advancements in perspective. Medications such as brain and spinal cord are affected during each attack. Capaxone have not placed us on the verge of miracles. Medical students learning about MS are taught to look For example, it remains unrealistic to assume that for lesions separated in time and space, the latter being Capaxone and similar treatments will allow persons defined as space within the central nervous system with spinal cord injuries to walk. Nevertheless, this (CNS, i.e., the brain and spinal cord) and the former scientific development does indicate some small mea- referring to the time between manifestation of lesions. sure of progress. And we all have to crawl before we Lesions produced by MS occur in different locations can run. during each episode, resulting in a variety of symptoms.

28 ABILITY CURRENT TREATMENT OF MULTIPLE combinations of drugs for MS are referred to as Disease SCLEROSIS Modifying Treatments (DMTs). DMT’s are intended to halt the long-term progression of the disease. ew drugs have been developed and approved to Fcombat the effects of a malfunctioning immune sys- A popular combination of drugs that make up one DMT tem on normal or transplanted organs. Use of medica- is referred to as “ABC.” In this acronym, the “A” stands tions for treatment of autoimmune disorders is a delicate for Avonex (Interferon Beta-1a), which is given by balancing act, since such medications function by sup- injection into a muscle once a week, typically for sever- pressing the immune system and make the patient’s al weeks. The “B” stands for Betaseron (Inteferon Beta- body vulnerable to infections. 1b). It is given by injection under the skin every other day in escalating doses over a span of six weeks. Final- An old standby for the treatment of MS is the introduc- ly, the “C” denotes a newer drug called Copaxone, tion of potent anti-inflammatory steroids into a patient’s which is glatiramer acetate. It is injected under the skin system, although this method has a lengthy list of dan- every day for a duration determined by a doctor on a gerous and unpleasant side effects if the steroids are case-by-case basis. used for a prolonged period. In addition to DMTs, other medications exist to address Newer medications fall under the categories of immune specific symptoms of the disease. For example, painful system suppressors or immune system modulators. tightness in muscles (resulting from nerve damage asso- Recent experience suggests that combinations of these ciated with MS) can be alleviated by utilization of a drugs on various dose and time schedules may provide type of Botox, though this Botox is not the same as that better results than previous available options. Typically which is used to smooth wrinkles. Botox treatment for an MS attack is best treated first with an immunopres- MS can be given in a single maximum dose that is sant agent—such as steroids or another, more recently rationed among the affected muscles every few months. developed, anti-inflammatory medication.

Once the acute inflammatory phase of the MS attack has subsided, drugs that modify or modulate specific activi- by Thomas Chappell, MD ties of the immune system can come into play. These

ABILITY 29 et’s begin with a little TV history: back in the mooners sat quietly until Ralph Kramden’s sewer-work- 1970s and early ’80s, there weren’t dozens of er friend, Norton (Art Carney), walked in and hollered, L cable networks doing original programming, or “Ralphie Boy!”, many fans of Laverne & Shirley loved YouTube, or Facebook, or iPods, or a thousand other to see Lennie and Squiggy stumble into a scene, dazed means of mass distraction. There were three TV net- and confused, and always with Squiggy yelling, in a works, a nascent PBS, and radio. Back then, prime- voice that sounded like Ethel Merman in labor, “Hello!” time network television was watched by everyone, Long before there were Wayne and Garth or Beavis and and everybody knew their favorite theme songs and Butthead or Dumb and Dumber, there were Lenny and characters. Squiggy. As David L. Lander, the actor who played Squiggy, described the characters, “Squiggy is the dumb In 1978 and ’79, the number one rated show in America guy who sees himself as a genius; Lenny is the dumb was a slapstick working-class sitcom called Laverne & guy who thinks Squiggy is a genius.” Shirley. Created by Gary Marshall, it ran on Tuesday nights at 8:30 and an average of 23 million viewers Laverne and Shirley ran for eight seasons and 178 tuned in every week. (The Office, by comparison, cur- episodes, finally ending in 1983. It went into world- rently pulls in eight million a week; 30 Rock, six mil- wide syndication and is probably still playing in Zim- lion, including those who record their programming on babwe. The show spawned Lenny and Squiggy dolls, TiVo). Laverne & Shirley featured four main characters: lunchboxes, and even a record album titled “Lenny and Milwaukee brewery workers and roommates Laverne The Squigtones.” When it was all over, Lenny (Michael and Shirley, and two addled-brained, greasy-haired hose McKean) went on to become David St. Hubbins in the heads from upstairs, Lenny Kosnowski and Andrew immortal faux-rock group Spinal Tap, and played many “Squiggy” Squigman. memorable roles in films by Christopher Guest and oth- ers. Today he stars on Broadway in the Tracy Letts Lots of people loved Laverne & Shirley because of play, Superior Donuts. comic sparkplugs Penny Marshall and Cindy Williams, who played the odd-couple, dreamy-headed leads. Some Squiggy, played by David L. Lander, got multiple scle- of us, however, were more intrigued by their knuckle- rosis (MS). headed sidekicks. Just as many viewers of The Honey-

30 ABILITY Photos by: Nancy Villere - CrushPhotoStudios.com Photos by: Nancy Villere

That’s where this story begins. For 15 years, from 1984, some exceptions to the rule—Marlee Matlin, Robert when he was first diagnosed with MS, until 1999, when David Hall, the coroner on CSI—the odds of having a he finally “came out” via a headline story in People disability and working steadily in Hollywood are not magazine, David Lander kept his MS a secret. His wife favorable, especially for actors. It is particularly hard to and daughter knew of his condition, as did a couple of stroll onto a stage or in front of a camera and hide a close friends, but that was about it. David didn’t even physical disability, especially one that often gets worse tell his father-in-law, a very famous Hollywood agent. in strange and unpredictable ways. The only way to survive Hollywood in the dark ages of the ’80s and ’90s, David figured, was to hide his condi- But David, seeing no other sane option, essentially lied tion at all times. Although Squiggy had proven to be a his way through the process of finding work in Holly- great role, walking around with MS and acting like he wood. He lied on every perfunctory physical checkup didn’t have a care in the world presented Lander with an before every movie and TV show he did. “Me? No, I’m even bigger challenge. It proved to be a 15-year, Emmy- fit as a fiddle. No MS over here.” He lied to his friends worthy performance. if they spotted him stumbling over a curb or suddenly grabbing a hold of a railing. He lied when a casting Throughout this period, David continued to work as an director asked him, as David tipped a little to the right actor, playing a minor-league baseball announcer in the while entering a room, “Did you have an accident?” Tom Hanks movie A League of Their Own and earning guest spots on hit shows like Married…With Children, Actress Teri Garr, also living with MS, had a pat answer Twin Peaks, Happy Days, and Mad About You. He even for questions like these:“Yes, in fact, I had a skiing acci- reprised Squiggy in a classic episode of The Simpsons. dent. Thank God nothing was broken.” David performed in plays, supplied lots of voiceover work for cartoons and commercials, and did all the other David once recalled the famous acting coach Stella things that working actors do. He just did it with MS. Adler having said, “Every actor playing a character should know a secret that his character has. If the writer A disability is not a good thing to have in Hollywood. doesn’t provide it, you should invent a secret only your Health, youth, boundless energy, newness, and the abili- character knows.” David decided that each of his char- ty to walk straight are smiled upon. Though there are acters would be privately dealing with MS. “But it’s

ABILITY 31 It was in the lobby of a casting office where David experienced an epiphany about how the “industry” gen- erally feels about actors with MS. David was up for the part of a landlord in a youth-oriented sitcom when the receptionist,within hearing distance of David, answered the phone and told the other party,“Oh, I’m sorry, but we’ve already cast the landlord.” When David told the receptionist he was there for the part of the landlord, she responded with, “Don’t worry, we just say that to some people. That was Richard Pryor’s agent who thought he’d be perfect for the role. But how could he do it? He has MS!”

Few people in show business, and probably anywhere else, have any real idea what having MS actually means. “All they know are symptoms, David said. “Symptoms not everyone will get at the same time, with the same intensity, or may not get at all. They hear MS and think, ‘Uh-oh, he’s going to have movement problems, coordi- nation problems, cognitive problems. What’s that? Memory? Oh, that’s no good. Okay, do we want a clum- sy guy who won’t remember his lines, who’ll maybe wake up blind tomorrow, not to mention possibly slur- ring his words? Or do we want another guy with brown hair? Okay, we’ll go with the brown-haired guy.”

If David Lander is any indication, MS has no apprecia- ble effect on someone’s wit. Asked if people like him and Teri Garr have a secret MS handshake, he David Lander played answered, “Yes, but we can never complete it. The Andrew “Squiggy” hand, the thumb…” Squigman in the TV show Laverne & Shirley The coup de grâce for David came with an ill-fated role in a play in Chicago called The Nerd. One of the pro- their secret,” he said, “and they’re not telling anybody.” ducers cast David, sight unseen, mistaking David for his Laverne & Shirley co-star Michael McKean. “She was This approach aimed David for tricky territory. For a so disappointed when I showed up,” David said. With film David once did with the great comic actor Harvey no rehearsal time, and with a load of props to manipu- Korman, the script called for a pivotal two-person scene late on stage, David found himself forced to hide his to take place in a bar. “Perfect,” David thought, “I can MS in a very physical performance. This experience, sit the whole time.” plus being dragged out to drink every night by the show’s producer, created problems for David. He was But the director called the night before filming and said, let go from the production with the excuse that his “David, the scene is boring. I want to make it more “drinking problem” disqualified him from performing. interesting, more filmic, so I’ve moved the whole thing to the jogging track at UCLA. You and Harvey will jog David didn’t argue. Rather than fessing up to the MS, a and talk.” David protested, but to no avail. He would disease he knew they wouldn’t understand anyway, he have to jog for no doubt multiple takes, catching his copped to a disease they did understand but which he breath long enough to reveal “the real murderer” to Har- didn’t have: alcoholism. vey Korman. Show business forgives alcoholics all the time. Ask all The next morning, full of trepidation that on the 20th those stars whose embarrassing mug shots permanently take his legs would collapse and his secret would be reside on YouTube. But it doesn’t forgive MS. shamefully revealed, David showed up at UCLA to discover that Harvey’s wardrobe crinkled like alu- After a decade and a half of hiding behind couches, try- minum foil after every three feet of jogging. The ing to conceal his dragging leg, telling gullible directors whole scene would have to be shot with frequent that he was limping because he thought it was good if breaks from the jog-a-thon. David was saved by a his character had had polio as a kid, and faking it in a wardrobe malfunction. hundred other ways, David finally decided to come out of the MS closet. The impetus was a call from his old

32 ABILITY friend, Penny Marshall. She asked him outright: “Is there something wrong with you?” “No,” David said, “why do you ask?” Marshall went on to explain that the daughter of a powerful man in Hollywood, Tom Sherak, had MS, and that Sherak held an annual fundraiser at which attendees honored someone with MS who they felt was handling the disease in a sterling fash- ion. “They’ll honor you if you have MS,” Marshall had said, “and if you don’t, the ticket is $200 and you sit in the back.”

“So,” David recalled, “I had a choice. I could keep up the lie, or I could win an award for having a disease for 15 years and doing a good job of lying about it. I went with the award.” David finally announced to the world that he had MS at that Dinner of Champions fund-raiser on 9-9-99.

People magazine had already negotiated the exclusive print rights to David’s life of deception, and was set to run it as a cover story when two kids decided to shoot up Columbine High School. As David recalls, “Suddenly I wasn’t going to be on the cover anymore unless I got a gun, and I wasn’t that desper- ate.” His article ran in a later issue and, along with all the press interest in the MS Dinner of Champions, David suddenly went from “comic actor” to “comic actor with MS” or worse, “comic actor tragically, cruelly afflicted with the deadly scourge of MS.”

Still looking for a stage on which to perform, David quickly turned his lemon of a disability into lemonade. After telling People that he was taking the MS drug Avonex, he was contacted by a woman at the company that produces the medication. “She was in her dentist’s office reading a one-month-old copy of People,” David said, “and she said to herself, ‘What? Who? Where? He has? David Lander? He’s a celebrity. He actually has MS. And he’s taking Avonex! Avonex is ours! He could be a spokesman for our company! Wow!’”

For the next ten years, with the help and guidance of the National MS Society, David hit the road doing public presentations about living with MS. The MS Society stipulated that David had to mention all current MS drugs, not just Avonex, because the drugs all worked differently for differ- ent people. David traveled city after city, essentially doing a one-man stand-up routine about how he came to deal with a life altered by MS. This new speaking role “helped restore my confidence in performing,” he now says, after the multiple rejections he had to endure during his years of lying in Hollywood.

David’s speaking career has been put on hold recently because of a change in corporate management (“They actually pay me for not going on the road,” he joked) so while he invents his next comic foray, he pursues his lifelong inter- est in baseball, fools with the array of mobility devices crowding his living room, and thinks about what MS has taught him.

“It’s basically dress rehearsal for old age,” he said. “You really start seeing things. I have to slow down, whether I like it or not. Sometimes I think I’m turning into another person, another character. I see myself in the mirror and I go, ‘Holy shit! What a character! What’s my secret?’”

David L. Lander’s secret is an absurdist outlook far more powerful than his old secret of MS. But don’t tell anybody.

by Allen Rucker

nationalmssociety.org

ABILITY 33 34 ABILITY t just 17 years old, Jesse Billauer was left para- lyzed after a surfing accident broke his neck Aand severed his spinal cord. Despite his doctors’ prediction that he would never surf again, Billauer took back to the waves and immersed himself in the Life Rolls On non-profit foundation, using adaptive equip- ment to return to the sport that he loves, and helping other surfers with disabilities do the same. Today, he is taking a leading role in activism for those with spinal cord injuries, and his documentary Jesse’s Story is rid- ing a wave of film festivals throughout the country.

ABILITY Magazine’s Chet Cooper and Liz Angeles caught up with Billauer to discuss his film, his founda- tion, and his future.

Chet Cooper: I got a press release this morning about the merger between your organization and Christopher Reeve’s.

Jesse Billauer: Yeah, it’s good stuff! Exciting.

Cooper: How did that come together? Did you go to them? Did they come to you?

Billauer: We’ve been working with those guys for many, many years. We donate a lot of the money from our events to the Christopher Reeve Foundation. They’ve admired all the work that we do with youth. We’re really big on the West Coast and they’re really big on the East Coast, so we just put our heads together, thought about how we could be a lot stronger and a lot better together, and we found we had a nice fit.

Cooper: Did you meet with Christopher Reeve?

Billauer: Yeah, I met him a few times. I have a docu- mentary movie of my life, called Jesse’s Story, and Christopher Reeve is featured in there. We did an interview with the two of us together.

Liz Angeles: Jesse, I know you did the Malibu Film Festival, and you’re going to do another festival in San Diego, is that right?

Billauer: The San Diego festival is tonight, actually.

Angeles: That’s tonight? So you have to fly back from New Jersey today?

Billauer: No, I won’t be there, but my whole family will attend it. I have to give some speeches over here at some high schools, and then we’ve got a Life Rolls On golf tournament in Cape May tomorrow, and then a surfing program over here on Sunday. So I came out

ABILITY 35 here while the movie’s playing in San Diego. safer, because a lot of people hit the coral, and you’re probably going to be avoiding that issue with the Cooper: And your foundation has a gala in Hollywood. buoyancy that your suit provides. Is that your largest fundraiser of the year? Billauer: Yeah, in a way. But I get pounded, too. Billauer: Well, that’s our annual big event, yeah. It’s called “Night by the Ocean.” Cooper: That can’t be good.

Angeles: Why is it called “Night by the Ocean” if it’s in Billauer: (laughs) For sure. I get pushed under the Hollywood? water, but I just pop back up.

Billauer: You get to be by the beach! We bring the Cooper: Have you ever thought you should be wearing beach to Hollywood. a helmet? In those situations when you’re in that low, shallow break? Cooper: Speaking of which, when you take these people with disabilities out surfing, the boards are modified? Billauer: I wear a helmet all the time, surfing. I almost got killed in Malibu by a longboarder. A guy’s board Billauer: Yeah, they’re modified. I lie on my stomach almost hit me in my head, and ever since then, I wear a and prop myself up on my elbows. There are also these helmet. I used to not wear a helmet or a life jacket, foot straps that we use for tow-in surfing, and straps years ago. that are mounted by the rails so you can just wedge yourself in. If you have the ability to grip, you can Cooper: So we all get to mature a little bit as we get hold onto them. But mostly we’re just lying older. on the board. Billauer: Yup. Angeles: In your documentary, when you go to Fiji and you have the jetski towing you, it’s mentioned that Angeles: So Jesse’s Story won two awards at the Malibu you’re not able to surf as you normally do because the Film Festival, right? waves are so big in Fiji. Why did you need that? Billauer: Yeah, it won both Jury Selection and Audience Billauer: Out there, the waves comes in at a faster Selection for the Best Documentary. We worked on that speed. If you get into the surf a lot earlier, they’re a lot film for about six or seven years, and have been editing faster, so if someone’s just pushing you, you might not it for the last three, so it feels good to have it out there. have enough speed to really be where you need to be on waves. So we kind of came up with this adaptive jetski Angeles: We met with Scott Caan for our previous issue, idea, in which I would be towed behind it. It was cool. who works with an organization called Surfer’s Healing. And we asked him what the difference was between Cooper: I’ve seen some of that, but I was wondering Surfer’s Healing and what your organization is doing, how you are able to catch a wave and not purl, because and he said that theirs is more for kids who are autistic body position is typically so important. and yours is more for people—

Billauer: If you feel like you’re going to purl, then you Billauer: Yeah, theirs is more for people with autism just scoot back on the board a little bit. and ours is more the spinal cord injury set. And the majority of our participants have never surfed. Cooper: Are you able to position your body when you’re on the board? Cooper: Can you briefly describe, for people who aren’t aware, what you actually do when you have a Billauer: Oh, yeah. I can turn. I turn by leaning my surfing event? shoulders. Billauer: Well, we have about 200 volunteers and Cooper: Are you capable of getting off the board if you maybe 40 different surfers with disabilities at a given want to bail out? event, and everyone is divided into four teams. So for each surfer, there are maybe 10 or 12 volunteers per Billauer: Yup. And I’ve got a life jacket that’s custom- person, and everyone gets an opportunity to surf. It’s built, Velcro-ed® to my wetsuit. If I fall, I pop right up. very safe. If someone is a surfer who’s more well- I can hold my breath. I can swim. But yeah, I’ve fallen versed with the ocean and who wants to venture farther inside the barrel of an eight-foot wave in Fiji, and I just out where there are bigger waves, it’s all about his or popped right up. her comfort level. You can be close in and catch little waves, or you can go out and catch bigger waves. It’s Cooper: So in a sense, what you have is maybe even really up to you. We choose locations that we know

36 ABILITY aren’t going to be too dangerous. Cooper: You feel like you’re making an impact in that way? Angeles: What would you say is the most fun thing that you’re up to these days? Billauer: Yeah, I do. I’ve had kids come up to me and tell me that they were thinking about committing suicide Billauer: Fishing and surfing, mostly. Diving with until they heard me speak, because their lives were that sharks was beautiful. I’d love to do that again. But right bad. But after talking to me and seeing me, they realized now I’m pretty interested in international efforts. things weren’t that bad after all. A girl came up to me who was a high school senior and she saw my speech By the way, does every celebrity on the cover of and said something clicked. She said, “I was just about ABILITY Magazine have some sort of connection to a to walk out of school and quit school today. I’m going disability? to stay in school now. I’ll graduate, just because of hear- ing what you had to say.” Cooper: If they don’t, then we take a bat to one of their limbs. [laughter] Actually, the celebrities either have a Cooper: You’re lucky you made the plane on time! disability or a strong connection to a health condition or disability. The celebrities choose to speak with us, to Billauer: (laughs) Right! So it’s all good, you know? If I help bring awareness, educate and change attitudes. reach one, I’ve done my job. When you’re talking to lit- tle kids, and they’re asking questions, they sometimes Billauer: That’s really cool. tell you a story about themselves. It’s really cute.

Angeles: So, now that you’re merging with the Christo- Cooper: Can you remember one? pher Reeve Foundation organization, I guess that makes you The Man now, right? Billauer: Usually a kid will just be like, “Hey, I broke my leg,” and instead of asking me a question about Billauer: Yeah, right. (laughs) But there’s also The something, he’ll just say, “I broke my leg,” or “I broke Buoniconti Fund and The Miami Project. Mark Buoni- my arm. It was a mess.” Some kids come up to me and conti has a lot of celebrity friends in sports, and they say, “What happened to your legs? Did you break them? raise millions and millions of dollars every year. I’m Are they gonna heal?” There are so many different just little old Jesse, man. No pressure. questions that I get. But it’s cool. Everyone has his own thoughts, and kids don’t hold back. They’re not worried. But I do a lot of motivational speaking now. That’s what That’s the way to be. I do around the country, and that’s how I make a living. I don’t make a living from Life Rolls On, I make a liv- For more information on surfing ing from my motivational speaking career. I speak to with Jesse Billauer, visit: companies, schools, various organizations. There’s liferollson.org/TWSA information about that at jessebillauer.com.

Cooper: How many speaking gigs do you typically do a year?

Billauer: I used to do 50 or 60, but I don’t anymore. I’d like to be doing about 120 a year.

Cooper: Did you ever think you’d be involved in any- thing like this? Had you thought of disability at all prior to your accident?

Billauer: Never. So, in a way, I don’t blame people for not doing anything to help people with dis- abilities. Most people just aren’t thinking of it. I tell people, “I didn’t know anything. Don’t blame yourself for not knowing anything. Just have an open mind and learn.” It’s not their fault. There’s no handbook that they’re sup- posed to read. It’s all life experiences, man. I’m just trying to teach people before they have to go through any of those tough experiences.

ABILITY 37 38 ABILITY he dust is sometimes too much for Ari Seirlis. It Witnessing the success of the first ride inspired Seirlis swirls around him, chunks of soil pelting his face, to transition from recipient to participant. “I wanted to Tdry air burning in his nostrils. The sun is scalding, get back into a hobby and sporting activity and join my and so is the engine on his four-wheeler. And Seirlis is in friends on their bikes,” Seirlis said. “It was important to love. give it my best shot to try and adapt a four-wheeler.”

September marks an annual trek for Seirlis: the Quads 4 For Seirlis, four-wheeling proved to be the very defini- Quads off-road ride in South Africa. This four-day tion of an adaptive sport. Though he has weakness in his excurion sets quadriplegic and paraplegic four-wheeler hands, Seirlis developed ways to exert pressure on the fanatics on a 1,000-kilometer trip from Carnival City to steering handlebars and to adapt the brake and accelera- Ballito, through a variety of terrain and sweltering con- tor. After some adaptive engineering, nothing could ditions. Sure, it’s a physical test. But for folks like keep Seirlis from the trail. Seirlis, it’s also a pure adrenaline rush. Since its inception, Quads 4 Quads has grown to as “The heat is a big challenge for me, Seirlis said. “The many as 700 participants and has conducted round-trips dust also creates some safety issues, and sitting on the from Johannesburg to Durban. This year’s event boasted bike for a long time puts a lot of strain on me. I don’t 400 participants, though the tour was scaled back to a have a very secure grip on the handlebars, so some of one-way trip to cut expenses. Along its impressive the technical sections are really challenging.” routes, Quads 4 Quads has continued to hand out a vari- ety of items to needy communities—everything from But none of that stops Seirlis from this test of soccer balls and stationery to wheelchairs and pressure endurance, as he treks alongside friends new and old. care mattresses. “One of the most amazing things about this trip is the camaraderie and the support that I get,” Seirlis said. “It’s important to give back,” Foley said. “South Africa has some very poor communities and they need to see Quads 4 Quads is the 2002 brainchild of Corinne some value, so we target schools, clinics and communi- Andrews and Glenn Foley, both of Family Adventures, ty centers.” Foley estimates the group has distributed a recreational adventure company based in South more than 100 wheelchairs to communities along its Africa. Andrews and Foley had been in business route. “I think that the fact that you can still ride your together as hosts of off-road rides since 1999, before dirtbike for 950 kilometers from a point to another point deciding to aim their venture at changing people’s lives without using any paved roads has caught people’s through volunteerism and donation. imaginations. Add to this the charity aspect and you have an event that really appeals.” “We decided that we were going to do something that nobody had tried before: a trip all the way from Johan- A portion of each rider’s entry fee goes to the Quad- nesburg to Durban on off-road bikes,” Foley said. Para Association of South Africa (QASA), and several “There was much debate about this because I was con- corporate sponsors have provided donations of cash vinced that it was virtually impossible. Then Corinne and goods to help offset the expenses of each year’s threw a real curveball and told me that we were going to trip. Profits go toward QASA’s mission of providing a ride for a cause and give our money away.” high quality of life for people with disabilities, with Seirlis himself serving as a high-spirited, four-wheeling The cause selected to benefit from Foley and Andrews’ example. endeavor would be Seirlis and his QuadPara Associa- tion of South Africa. Andrews and Foley took eight “All of the entrants in the last few years now have a months to plan their trip, and drew 200 riders to the good idea of what QASA does as an organization, and event. Seirlis himself did not participate in the first tour, they’ve all been very generous to us,” Seirlis said. “The instead meeting the Quads 4 Quads group at its destina- fact that I’ve managed to complete this event three tion for ceremonial purposes. times has inspired many other quadriplegics and para- plegics to participate.” “It was a roaring success,” Foley said. “When we got to Carnival City in Brakpan and handed Ari a check for by Josh Pate around $200,000, the reality set in, and one of the most positive initiatives in the motorcycle industry was Quads 4 Quads on Facebook born.” facebook.com/event.php?eid=77790467027 QASA The $200,000 Seirlis was given stemmed from a variety of qasa.co.za sponsors who had signed up for the trip, as well as from Family Adventures donations and entry fees from the trek’s participants. The familyadventures.co.za/quads4quads.asp Quads 4 Quads group also made multiple stops along its route to distribute goods to needy communities.

ABILITY 39 he Equal Employment Opportunity Commission company from engaging in disability discrimination. (EEOC) enforces federal laws prohibiting dis- The EEOC also asks the court to order that the company Tcrimination in employment. The following are institute and carry out policies and practices that eradi- recent cases brought about from the EEOC. cate and prevent disability discrimination in the work- place. CLAYTON GROCERY SUED FOR LEARNING DISABILITY DISCRIMINATION D.R. HORTON SUED FOR DISABILITY DISCRIMINATION IN FIRING EMPLOYEE WITH SEVERE PREGNANCY Clayton Ranch Market, a grocery store in Clayton, COMPLICATIONS NM, violated the Americans with Disabilities Act (ADA) by refusing to hire a qualified applicant because A Fortune 500 home builder and land developer which he had a disability, the US Equal Employment Opportu- identifies itself as the nation’s largest home builder nity Commission (EEOC) charged in a lawsuit. The refused to accommodate an employee’s pregnancy-relat- ed disability and unlawfully fired her, the EEOC In its suit, the EEOC stated that since at least April charged in a lawsuit. 2008, Clayton Ranch Market violated the ADA by fail- ing to hire Robert Harris because of his learning disabil- The EEOC’s suit charged that D.R. Horton refused to ity. The EEOC filed suit in US District Court for the accommodate a project manager for Horton in Kirkland, District of New Mexico (EEOC v. Moore and Moore, WA, when it denied her additional unpaid leave time Inc. and Clayton Ranch Market Inc.) after first attempt- after her doctor had placed her on bedrest for over seven ing to reach a voluntary settlement. months as a result of pregnancy-related complications. Although the company initially provided some leave “The EEOC’s investigation revealed that Clayton Ranch time to the employee, it stated that any additional leave Market hired people with the same or similar qualifica- time was against company policy, even if that period of tions as Mr. Harris, yet Mr. Harris, who sought employ- time was unpaid. The employee was later fired as a ment with the store, was neither hired or contacted result of this circumstance. about a job,” said EEOC Phoenix Acting District Direc- tor Rayford Irvin. “Employers cannot deny employment The ADA requires that employers engage in an interac- to qualified applicants because of disability.” tive process with employees in good faith, exploring possible accommodations for an employee’s disability. Regional Attorney Mary Jo O’Neill of the EEOC’s The EEOC filed suit in US District Court for the West- Phoenix District Office, added, “Employment decisions ern District of Washington after first attempting to reach made solely on a person’s disability are illegal,” added a voluntary settlement. On behalf of the employee, the Mary Jo O’Neill, regional attorney of the EEOC’s EEOC seeks monetary damages, focusing its case on Phoenix District Office. “Employment opportunities anti-discrimination laws, changes in policies on accom- should be made available to anyone who wants to work modating employees with disabilities, posting of notices and who is capable of doing the job, regardless of dis- at the work site, and other injunctive relief. abilities.” “It is shocking that a company of this size would have a The lawsuit asks that the court order Clayton Ranch policy that is so rigid,” said EEOC San Francisco Market to provide Harris with appropriate relief (includ- Regional Attorney William R. Tamayo. “It fails to con- ing back wages, compensatory and punitive damages), sider its obligation under the law to discuss potential and to grant a permanent injunction enjoining the accommodations for an employee’s disability.”

40 ABILITY “Companies that fail to engage in discussion with their “St. John should have done more for Ms. Reherman employees about reasonable ways to accommodate their than tell her to locate a vacant position within the hos- disabilities will lose valuable members of their work pital system,” said Melvin Kennedy, EEOC Senior force and invite litigation,” added San Francisco District Trial Attorney. “It is encouraging that this lawsuit set- Director Michael Baldonado. “A company that bills tled so quickly and that St. John agreed to reporting itself as ‘America’s Builder’ can surely do better to provisions in the consent decree that will allow the ensure equal opportunity for all its workers, including EEOC to monitor its future responses to reasonable those with disabilities.” accommodation requests.”

According to the company website, www.drhorton.com, MEDICAL TRANSCRIPTION COMPANY DENIED JOB D.R. Horton is the largest home builder in the United BASED ON STEREOTYPES OF PEOPLE WITH MULTI- States and a Fortune 500 company with operations in 28 PLE SCLEROSIS states and headquarters in Fort Worth, Texas. A medical transcription company in Rockville, MD, ST. JOHN HEALTH SYSTEM SETTLES EEOC DISABILI- violated federal law when it refused to hire a medical TY DISCRIMINATION LAWSUIT transcriptionist to a full-time job because of her multi- ple sclerosis, the EEOC charged in a lawsuit it St. John Health System, Inc., of Tulsa, OK, will pay announced today. $100,000 and furnish other relief to settle a disability discrimination lawsuit filed by the EEOC. The EEOC In its suit, the EEOC said that since at least May 2006 had charged that the company violated the ADA by and continuing into the present, Oracle Transcription, failing to reasonably accommodate a hearing-impaired Inc. denied Mary Bobik a position as a full-time med- operating room scrub technician. ical transcription editor. Oracle’s supervisor told Bobik that they didn’t want to “stress her out” with the According to the EEOC’s suit, LaQuita Reherman had responsibilities of a full-time position, even though she been employed by St. John for approximately six years had worked at Oracle Transcription for several years before she was removed from her scrub technician and was regularly assigned to work more than 60 hours position in March 2006 after several physicians a week as a part-time editor. Bobik, who has nearly 20 complained about her being hard of hearing. The years of experience as a medical transcriptionist and EEOC noted that, although Reherman wears hearing editor, was physically capable and willing to perform aids in both ears, she would have been able to hear the duties, the EEOC said. Instead, Oracle Transcrip- doctors’ instructions if not for their practice of playing tion ignored Bobik’s requests for a full-time job and loud music in the operating room. hired other persons with less experience.

Reherman made it known to St. John that she needed The Americans With Disabilities Act (ADA) makes it unlawful to discriminate against a qualified individual assistance in finding another position, but the hospital because of a disability. The EEOC filed suit in US Dis- made no effort to assist her. Instead, Reherman’s supe- trict Court for the District of Maryland, Southern Dis- riors simply put her, temporarily, into another position trict, after first attempting to reach a voluntary settle- and told her to find a new job within the hospital sys- ment. The complaint seeks monetary and injunctive tem, the EEOC said. St. John terminated Reherman in relief, including back wages, compensatory and puni- June 2006 after she proved unable to find a vacant tive damages and changes in employment policies to position. provide equal employment opportunities for qualified individuals with disabilities. Disability discrimination violates the ADA, a law which requires employers to make reasonable accom- “Many people, including Mary Bobik, have demonstrat- modations for employees’ disabilities as long as such ed their ability to perform their jobs just fine regardless accommodation do not pose an undue hardship on the of MS,” said EEOC Acting Regional Attorney Debra M. business. The EEOC filed suit after first attempting to Lawrence. “She worked many long hours for Oracle and reach a pre-litigation settlement. was able and willing to continue to do so.”

Under the terms of the consent decree, filed today for According to its Web site, Oracle Transcription pro- approval in the US District Court for the Northern Dis- vides medical transcription services to hospitals and trict of Oklahoma (EEOC and Reherman v. St. John medical facilities in Washington DC and throughout Health System, Inc.), St. John agreed to pay LaQuita the country. Reherman $100,000 in damages. The company also agreed to provide disability discrimination training to all management and supervisory employees and to In fiscal year 2008, disability-based charges rose to a record report all requests for reasonable accommodation to the 19,543, up 10.2 percent from the prior year and the highest level EEOC for the next three years. since 1995. eeoc.gov

ABILITY 41 Notice how commas, periods, capitalization, and quota- tions are used in the right places in this dialogue, allow- ing the reader to focus on the story. The reader might now ask himself, “why is Prachi tired and annoyed by a phone call? What has she been doing? Who is she talk- ing to?”

eople always advise me that I can do anything I As a writer, you should also be asking yourself these want, in spite of my disability. But my disability, questions—they automatically give you more material stage-four Friedreich’s Ataxia, is a very complicat- to write! If you are able to answer the questions appro- P priately and write their answers convincingly, the ed one. So I guess I cannot realistically be an astronaut. process of creation will be a smoother and more fun But I can be an astronaut on paper. experience. But don’t write only speeches in your story or it will become a screenplay! It is human nature to have dreams. Within our dreams, plot, setting, and characters (the essentials of any tale!) Don’t be too concerned about the length of your story, emerge. As long as we have our dreams, we don’t even but do watch out for repetitive use of a word, or use of have to have a vivid imagination. Write our dreams on too many words that have the same meaning. The flaw paper (using proper grammatical skills, of course!) and of using one word over and over again is called “wordi- bingo, we’re well on our way to a notable story. ness.” For example:

But what is a story? Stories can be defined in a number “That word obviously has the exact, precise meaning of ways. They can be factual or fictional—although but obviously I can’t use it.” most often, a story is regarded as a false account rather than as a truthful report. The key rule for writing a good Doesn’t that line seem a little stupid? As you can see, story, however, is simplicity. the word “obviously” only needs to be used once in this example. And since the words “precise” and “exact” While reading your story, a reader must be invited to have the same meanings, repetitiveness decreases the believe in it (“Yes, this could happen,” he or she might power of the story’s tone, making the narrative boring. say, nodding.) Although there are many ways for writers to simulate reality in a story, utilization of dreams Try to match the tone of the story with your own writing allows them to do so in the most effortless way, essen- style. For example, if you don’t feel comfortable writing tially writing the story as if they were living it. with big words, don’t use them! It’s more important to make sure your writing is coherent than to show off. It’s If you are attempting to generate ideas for a plot of a also important to have a sense of character and place. story, consider drawing from events that you want to (You can’t have a surfer saying, “Dude, I totally don’t happen in your own life. For example, if you want to be get that,” at Oxford University in England!). a figure skater, write about practices, competitions, or personal rivalries with other skaters. Don’t be afraid to explore during the writing process. Your rough draft shouldn’t be your final draft, it should The setting should also match your plot—you can’t have just include vague ideas of your story. It’s also helpful an ice skating exhibition in Afghanistan where there are to try to think of a conclusion before you write down the no ice rinks! Besides, I’m sure only few people would plot—your starting and ending points should be clear in dream about going to Afghanistan. There are plenty of your mind, even if the in-between scenarios might be fascinating places in the world that do have ice rinks! unclear.

It is also helpful to put your persona, goals, and desire A good story has the power to make your out-of-reach into each character of your story. Spread your traits into life come alive. Even if a story seems absurd (maybe all of your characters. If you are confident and ambitious, yours is about flying humans because you want to fly!), you might give these traits to your protagonist, pitting her you should write it in a way that makes it believable. JK against an antagonist who will do anything to stop her. Rowling’s Harry Potter books might be fantasy, but her writing style makes the world of the story seem con- Make sure to use prim and clear grammatical tech- vincing (I actually believe that Hogwarts exists!). niques. Not only do these elements make your story appealing, they help you develop an attractive voice, With the proper composition, you can do anything you tone, and style in your work. want on paper. But don’t just create an exciting life, live it! Focus on what you can do instead of what you can’t, Dialogue in your story should demonstrate strong voice because that is the best way to learn and the best way to and should raise suspense: “Come on,” Prachi said, live! exasperated. “Get off the phone!” by Pinal “Pinky” Patel pinkdreams_1.tripod.com 42 ABILITY ABILITY 43 44 ABILITY Photos by: Nancy Villere - CrushPhotoStudios.com Photos by: Nancy Villere

ctor Shemar Moore had an eight-year run as Malcolm Winters on the popular daytime soap opera The Young and the Restless, as well as a supporting role in the feature film ADiary of a Mad Black Woman. Today he stars on the CBS drama Criminal Minds as FBI Special Agent Derek Morgan. When he’s not enforcing the law on the small screen, Moore bikes to raise awareness of multiple sclerosis, a disease that hits him close to home.

ABILITY Magazine’s Chet Cooper sat down with Moore for a chat in his Los Angeles home.

Chet Cooper: I understand you enjoy doing a little boxing.

Shemar Moore: Yeah. I haven’t done it lately, but I did it off and on for quite awhile. I love it. I can hit the stuffing out of the bags, because they don’t hit back, you know? It was just a cool way to handle cardio. But now I’ve gotten more into cycling, because I ride for my mother, who has MS. So I’ve done a hundred-mile fundraising bike ride with a bunch of guys I work with at Criminal Minds.

ABILITY 45 6ABILITY 46 L toR:MooreandactorJasonAlexander onthesetof Criminal Minds oR JoeMantegna,AJCookand Moore L toR:

©Photographer/ABC Studios Cooper: So you stay pretty active, then. Athletics has been a way of life for me. Working out in a gym gets old after while, so you’ve got to mix it up. I Moore: Sure. The only sport I’m not all that good at, go and I do the sand dunes, I do the Santa Monica stairs, which shouldn’t admit, is basketball. I guess I’ve got I ride my bike, I box— white man’s disease because I’m half white. Cooper: The sand dunes? Does that mean you run the Cooper: You can’t jump? sand dunes?

Moore: Oh, I can jump, I just don’t have much of a left Moore: Yeah. It’s like 100 yards straight up. A lot of the hand. I can play a mean game of horse, though. But no, football players train out there, some of the basketball I’ve done every kind of sport. I love that stuff. Before players. I think Kobe Bryant gets out there with his Hollywood, I thought I was going to be a baseball player. trainer and does it. But yeah, I just love the hot weather and I love exercise, so I keep it together. A good black Then I got into cycling, just because I was doing moun- don’t crack. But I’m getting older, so it’s not as easy tain bike stuff, and I met some guys at the show and anymore. Running takes its toll. they told me I had a sissy bike. So now I’ve got a new bike and the whole kit. You’ve got to look fancy, right? Cooper: Tell me about your experience with your As long as you’re connected to your bike, you look real- mother’s diagnosis of MS. How did that come about? ly cool, but if you’re not connected to your bike, you just look like a man in tights, which is not very cool. Moore: My mother’s been diagnosed for about 12 years now, and it’s been tough. It was tough on her physically Cooper: I was just in Ireland, where Lance Armstrong and it was tough on both of us emotionally. I think both was doing the Tour de Ireland. of us were in denial in the beginning, so it took some time to kind of get out of the gate and really embrace Moore: Oh yeah? I guess the guys I work with are like a that she had it. Then we could focus on what it was and level below Lance Armstrong. They do semi-pro racing how to combat it. I’m an only child raised by a single and all that. Me, I’ve just got the fancy tights, I’ve got mom, and I really tip my cap to her, because all my life the fancy all-carbon-fiber bike. I look the part, but I’m she was my mentor and my hero. We tell each other that just an actor riding a bike. So I act like I can ride. we were at the front of the line when they were handing out mothers and sons. She always was trying to save the But, yeah, I guess I really try to do a little of everything. world. She was trying to save the neighborhood. She

ABILITY 47 was the neighborhood mom. educated. She taught mathematics and English overseas. So she was able to get us opportunity and she was able Cooper: Where was this? Where did you grow up? to get me out of that kind of racial unrest.

Moore: Oh, I grew up in so many different places, but I’m grateful for that time of my life, though. I’m grate- for the most part in high school I was up in Palo Alto. ful for the travels and all of it, because I think it all For the first six years of my life I lived out of the coun- instilled values and a sense of broad thinking. The way I try. I was born in Oakland, California, here in the States, approach my life, I don’t see color, I don’t get caught up and then I didn’t live in the States again until I was in all that stuff that a lot of Americans get caught up in. almost seven. I lived in Denmark for the first three years I kind of have a European mindset. I feel more comfort- of my life. able when I travel with people. Here in America there is still a very serious class system. We have a black Presi- Cooper: You’ve got a really thick accent. dent, but racism is far from over.

Moore: (laughs) Yeah, right, maybe a little bit. My But I’m blessed, and I’m beating it. I’m living a dream mother has the real strong accent. My mother’s from life. I’m doing things that people wish they could do. I Boston, so it’s, “Shemah, pahk the cah, Hahrvahrd take none of it for granted. I don’t have a family. I don’t Yahrd,” and all that. If I’m around people with whatever have a wife and kids yet. I’m turning 40 this year, so accents, I can usually pick them up. Danish was my first that’s hopefully around the corner. language, but I only really knew enough to say, “My dia- per’s dirty and I’m hungry.” Cooper: How did you get this connection between your mother getting MS and then making a decision to come And then I went to Bahrain and lived there for three out and start supporting the MS Society? years. So Denmark and Bahrain were our two mainstays as I was growing up. Moore: Well, my mother is a woman who’s pretty inde- structible. She is so smart, so charismatic and ambitious, Cooper: Did you learn any Arabic? and she’s always thought outside of the box. In the late ’60s, to marry a black man and then to raise a biracial Moore: I didn’t. My mother put me in a British private child on her own, all over the world, she really had to school so I could learn English because she knew she have a strong mindset. And so when her MS kicked in, I was going to bring me back to the States eventually. I was seeing this superwoman, so to speak, kind of find was born in the ’70s. Civil rights were a big thing and her Kryptonite and deteriorate. It was shocking. It was Martin Luther King had just been killed in ’68. There humbling. It was scary. She’s all I’ve got. I don’t have was a lot of unrest. any brothers or sisters.

It was a trendy time for interracial relationships, but So in the beginning, it was just about figuring out what they were not very accepted. My mother didn’t want to her symptoms were, figuring out what medicines were raise me in a racist environment any more than she had available. We were shooting in the dark. She was to. It was tough. But my mother was very smart, highly guessing and just taking the word of doctors. And then

48 ABILITY I got on Criminal Minds, and I started riding with some of the guys there. I was spending my weekends going out with these guys and we’d ride 50 miles, 75 miles. In conversation, I brought up my mother’s MS, and my buddies told me that there are MS events around the country, including bike rides.

So basically, I found out that I could take a hobby that was just fun for me to do and I could use it to raise awareness. I could raise money, and I could meet peo- ple in the world of MS. Then I could meet doctors and others with MS and pick their brains and find out what they’re doing to combat it. One thing led to another, and the next thing you know, I was riding 100 miles with a group of guys at work. We’ve been doing that for four years now. We have more than 50 riders, and we have folks who drive the vans, and then we just have people who come out and cheer us on. The other actors on the show come out in support of us at the finish line.

Cooper: That must be encouraging.

Moore: The first year we did it, Mandy Patinkin, who was the star of our show for the first two years, rode just because he had a soft spot for how much I cared about my mom and for what I was doing. He wanted to show his support. Once he signed on, then Thomas Gibson signed on, who’s on our show now. All of a sudden, we had evolved into this support group of Criminal Minds crew who wanted to sup- port MS and to support me in my fight for Mom. It And when something hits you close to home, you know inspired my mother. It humbled her. It made her cry. you’ll do whatever you can to help give that person you care about a better quality of life. So I go to different Often people who are afflicted by various diseases, MS events with her, and I ride the bike for her. And whether the disease is MS or anything else, feel alone today she’s coping with her MS, and she’s walking and and feel misunderstood. They have no voice. We now singing and dancing, living her life. She has her good have a better, more well-rounded knowledge of the dis- days and her bad days. She loves yoga and swimming ease and we’re much more specific about the type of and visiting with friends. meds that my mother has to take and how we can fight. Cooper: There’s an organization called YogAbility, Cooper: What’s she taking? specifically geared towards people with MS who are Moore: She’s on interferons. Four years ago she was interested in learning yoga. taking an injection every day, but now she does injec- tions once a week, which is more manageable. Just hav- Moore: Yeah, yoga’s amazing. It’s hard for me, person- ing to stick a needle in her every day was tough, and she ally, because I don’t have the patience for it. And I’m was having problems with her hip. She thought it was pretty in shape and athletic and all that, but yoga is not the MS, but it was something altogether unrelated. She easy. People think it’s like meditation or just sitting was doing Botox injections for a while. around. With all of the stretching and the positions, you have to be flexible, and strong emotionally. Four years ago we really thought my mother was on the verge of not being able to walk, and that scared me Cooper: But that’s what yoga is for, right? Making you because I wasn’t used to seeing my mother like that, but more flexible and stronger emotionally. also because her will to live and just to enjoy her daily routine was dissipating. And now, four years later, she’s Moore: Oh, yeah. My mother used to go to a retreat dancing in her kitchen and going to ball games and she called Kripalu, up in Lennox, Massachusetts. I think swims. She’s able to travel again. She just got back from John Travolta and Woody Harrelson have been known to a three-week trip to Denmark, actually. So she’s got her go there, where you spend a week, a month doing yoga. zest and her spunk back, and that’s great. My mother actually got her yoga teaching instructor’s license, so she’s fully committed and she loves it. But

ABILITY 49 Photos by: Nancy Villere - CrushPhotoStudios.com Photos by: Nancy Villere

50 ABILITY physically, there are certain things she can and can’t do. my world of Hollywood that I think she would enjoy, I Yoga really is a life-saver for her, though. It’s her medita- include her, whether it’s just so she can walk the red tion. It’s her therapy. She’s got her mat at the house, and carpet and feel fabulous or just come support me in she sits with herself for an hour or two. Between that and something I’m doing. swimming and being with her friends, that’s pretty much her routine. She’s good. Cooper: We saw your picture on the red carpet where you were showing off your six-pack. Cooper: You know, the American Medical Association has now reversed its opinion on marijuana as a medica- Moore: That must have been a picture from 10 years tion option. I know a lot of people with MS and— ago. I don’t do shirtless pictures today. (laughs)

Moore: Yeah, she has a prescription. My mother is a Cooper: Well, competitive biking is a pretty intense hippie, and now she’s got permission by the government exercise. to get high. She’s doing just fine. (laughs) I was born April 20, and 4/20 is, like, the weed national holiday. Moore: Yeah, every time. You can get out there and race and get your ego all in there, or it can just be a personal Cooper: I didn’t know that. challenge. That’s what I love about the MS ride. You’re raising money for MS, but also you can get out there Moore: But I know that when I smoke I’m a miserable and be competitive or challenge yourself. And you get mess. My body doesn’t line up with it. One hit, I’m to see parts of the world on your bicycle that you would okay. I giggle, I talk a lot. Two hits, it’s a wrap. I’m never see from your car. paranoid, I’m hiding in my closet. It’s a wrap. I’m done. So I can’t touch it. That’s not my vice. It’s tough on your body, sure, and you’ve got to go through the soreness and all that. But once you get used Cooper: Does your mom’s house have a pretty accessi- to it, and once your muscles get conditioned for it, then ble layout? I see your place has a lot of stairs. you can just enjoy the ride. I had a friend who did the San Francisco to DC ride, raising money for cancer. It Moore: Yeah, this house isn’t set up for it, but my took him two and a half weeks. He would sleep in vans mom’s place is completely set up for a wheelchair, on the side of the road at night and get on his bike and walker, scooter, the whole bit. What’s great is that, in ride throughout the day. the last three years, she doesn’t need any of those devices. She really is much more mobile than she used Cooper: Two weeks. That’s a good clip. to be, even on her bad days. She was on a walker all the time in her house, and now I don’t even think she has Moore: Well, he’s a serious cyclist. This isn’t just my the walker anymore. Now she’s really able to get friend next door. He rides 60 miles a day before work, around. and then on the weekends he’ll go do 200, 300 miles.

Sometimes she gets overheated, though, which is one of Cooper: Do you think you’ll ever get to a point where the symptoms of her condition. And for a while she was you’re doing long-distance rides like that? falling a lot, because of her bad hip. So that was just scary and dangerous. But those days seem to be over. Moore: I don’t really have the ambition to be Lance She’s 66 now, but three years ago she was moving Armstrong. I’ve got plenty of ambition in other areas of around like she was 85. Now she’s moving around like my life. I just enjoy the sport. I like getting myself into she’s her age or younger, and her personality and her shape so I can do 100 miles on the weekend. For about spirit is back to that of a twenty-year-old. She’s four months, I was riding to work on my bike and leav- excitable and fun and wants to do stuff. It’s really, really ing the car at home. nice to see. It’s really a relief. Cooper: And you mentioned you’re turning 40 this year? Cooper: That’s impressive, that her spirit is so high. Did you know that over 50% of people with MS actually suf- Moore: That’s right. And good black don’t crack. It’s all fer from clinical depression? about how you feel. So I’m excited for 40.

Moore: Really? Well, listen, my mom has her moments. Cooper: Are you going to do anything special for your But she’s got great friends, a great support group, and birthday? she’s never alone, which makes me happy. I’m down here in LA, and my schedule’s so crazy with work that I Moore: Well, for my 39th birthday, I had an all-white don’t get to see her as much as I’d like to. It’s not so party right here in the house, in the backyard. There easy to just get up there. I mean, San Francisco is not were 340 people here. that far away, but I probably get up there four or five times a year. Any time there’s something going on in Cooper: No black friends?

ABILITY 51 Moore let the dogs out... (Sugar and Moe) Moore: (laughs) Everybody wore all white. It’s a theme. It’s cool. Women look really good in white, and when men get dressed in white, there’s a whole different eti- quette, a whole different swag. You just see a sea of white: white bikinis, white suits, white sun- dresses. There’s just white. It was very cool. This year, though, I think it’s gonna be much more intimate and low-key, with just the people that matter. I don’t know.

Cooper: Plaid?

Moore: (laughs) You know, some- times I think maybe the 40th birth- day party is going to be an all- black party, with headstones in the grass that say “Death of a Player.” Because my mother’s been beg- ging for grandkids. She’s just got the dogs right now.

Cooper: You don’t have anybody that could—

Moore: Nobody I can bring home to Mom yet. She said, “I don’t want to meet any of them unless they’re gonna give me some grandbabies and they have a col- lege education.” My mom’s real specific about who she thinks I should have in my life. But, no. I have rings, but none of them repre- sent marriage. I haven’t met her yet. My grandmother always told me, “Don’t go looking for her. When she’s right, she’s just gonna show up out of the blue and bite you on the tush.” So I’m waiting to be bitten on the tush. (laughs) made me feel like an idiot, but I was okay with it. Life Honestly, I think there are lots of beautiful women in is good, you know? LA, and this is where I spend most of my time, so I date from the pool of people that I meet here. But I have a nationalmssociety.org feeling—and I don’t know why I feel this way—but I abc.com/primetime/criminal_minds am a sucker for an accent. So I have a feeling that who- ever I do marry is going to be from another country. I dated a woman from Panama once, and all I wanted her to do was keep talking. She kept calling me “Papi,” say- ing a bunch of things I didn’t know, but it was sexy.

Cooper: I met someone from Costa Rica who kept call- photo by: michael darter ing me “Papi.” I thought it meant “idiot.”

Moore: (laughs) Hey, I’ll be her idiot any day. Trust me, you’d be her idiot, too. I’ve dated a few women who Moore with his mother Marilyn

ABILITY 53 etworking. I used to think of it as an awful, dirty word and an even sneakier and sly practice. NFrom passing around cards to shaking hands, everything seemed fake and manufactured and disingen- uous. Yet people applauded it, spoke so highly of the benefits and importance of this practice, this networking business. What was I missing? from the hot, August sun all morning were darkening. This past August I witnessed a kind of networking that Within the hour, rain would begin to fall. completely changed my mind about what it is and why it’s really important. But the enthusiasm of the ABILITY Corps never wavered. Some volunteers suggested coming out again It was a humid, overcast day in Ocala, Florida, and we on Friday, and, when they were told that Habitat would were building a home for Cynthia and William King. A not be building that day, they returned with a follow-up couple of weeks earlier, I had started working with offer to come back on Saturday. Even some of the shyer ABILITY Awareness as a new AmeriCorps volunteer, volunteers, who had expressed hesitation at coming out and I was excited to witness the ABILITY Build pro- that day, now confidently asked when they could help gram for the first time. In addition to Habitat for out again. Meanwhile, I watched the trainers and care- Humanity site supervisors and construction managers, givers exchange information with workers from the my coworker Laura Evans and veteran ABILITY Build Habitat affiliate so that future builds could be arranged. volunteer John Siciliano, we worked among a team of fresh ABILITY Corps volunteers from United Cerebral At the ABILITY Build I was able to observe the value Palsy of East Central Florida and Developmental Ser- of networking, particularly for people with disabilities. vice Trainers, Inc., an organization which helps people All too often, businesses, nonprofits, and volunteer with developmental disabilities learn job skills to organizations underestimate the capability of people become more employable. with disabilities. This perception has led to a nearly 70 percent unemployment rate for working-age adults with Although most of the volunteers had never been on a disabilities, and has limited volunteer opportunities for build before, Durren Omens immediately started rein- all people with disabilities. Through the ABILITY Build forcing the frames around the doors and windows with program, ABILITY Awareness is not only breaking bar- thin metal braces, each about two feet long. After a few riers to entry by changing perceptions about what peo- heavy hits of the hammer, the nails were in. Durren ple with disabilities can do, but is also creating valuable explained that his uncle worked in the construction networking opportunities where workers can meet peo- trade, so he’d learned a lot from him. ple who might connect them to places where their skills are needed. While about half of the team sweated in the morning heat, struggling to align two-by-fours to build the inter- My first impression of networking was that it was sim- nal frame walls, Durren made his way around the whole ply a cheap way to weasel my way into a job by meeting house with ease, eagerly asking what to do next when important people rather than by demonstrating my skills he’d finished a task. Half of our volunteers went to and abilities. But since my experience in Ocala, I’ve another nearly-completed Habitat house just behind the come to see networking opportunities in a much differ- King’s house to help level the dirt in the yard with shov- ent light. Networking serve as both a means to demon- els and rakes. strate ability and to build bridges between people and companies for many to cross—not just people seeking By two in the afternoon, the construction workers were help or employment. ready to start packing up. The clouds that had shaded us At the Ocala build, we helped connect the Habitat effort to a new resource of volunteers, proved that volunteers with disabilities could a boon to the organization, and made it possible for a disability training program to find a new way of teaching basic working skills. As a result of the relationships that were formed in that experience, hundreds of people now have increased access to oppor- tunities. And I can’t find anything sneaky, sly, or dirty about that at all! by Dana Nelson abilityawareness.org

54 ABILITY ABILITY 55 people with and without intellectual disabilities toward the following goals: •Promotion of self-determination in health care •Reduction of persistent health and mental health dis- parities and inequalities •Removal of barriers to successful adoption of known models of effective chronic disease care and enhancement of primary care access •Creation of functional approaches to health literacy

Although the health and mental health problems that need to be addressed for people with intellectual dis- abilities present their own health care challenges, the potential solutions have broad implications for the general delivery of health care. For example, psychi- atric disorders and other specialized health problems are common among adults with intellectual disabili- ties, and the profile of psychiatric disorders differs from that found in general psychiatry. Over 30% of people with intellectual disabilities also experience chronic mental health problems, almost 20% will have serious behavior disorders, and 9% will have diag- noses along the autism spectrum. Epilepsy is also a frequent co-diagnosis for those receiving specialized psychiatric services.

HEALTH DISPARITIES FOR PEOPLE WITH MENTAL HEALTH DISEASE VS. PEOPLE WITH INTELLECTUAL round the globe, health and mental health services DISABILITIES grapple with two concerns that have reduced the effectiveness and increased the costs of health A Research done at WIHD illustrates that people with care: low levels of worldwide health literacy and a lack of chronic mental health problems and people with intel- effective support for self-care of chronic health problems. lectual disabilities share many of the same health dispar- Recently, however, studies at the Westchester Institute for ities and health outcomes. Available data also shows Human Development (WIHD) are finding that innovative that people diagnosed with mental illnesses often die use of personal computers and communications technolo- prematurely from a variety of causes. People with psy- gies can help change this troubling status quo, beginning chiatric disabilities experience heart disease, diabetes, with a capacity for providing improved support for peo- obesity, high blood pressure, and other severe medical ple with intellectual disabilities. problems in disproportionate numbers compared to the general population. More specifically, people with men- A regional organization in New York, WIHD is part of a tal illnesses who are served by our public health systems national network of university-affiliated centers dedicat- die an average of 25 years younger than the general ed to improving the lives of people with disabilities population, and people with intellectual disabilities through education, service, and research. Services pro- carry an increased risk for secondary health conditions, vided by the organization, which often follow a child including cardiovascular disease, diabetes, high blood throughout his or her lifespan, include comprehensive pressure, obesity, and osteoporosis. This demographic medical and dental care programs, as well as education- of people is also less likely to routinely exercise, result- based support and guidance into the working world. ing in generally poor health outcomes and reduced life “Whatever need we had for my daughter, WIHD has expectancy. had the service to address it,” said Barbara Stein, the mother of a 19-year-old with Down syndrome who has Health care systems usually try to maximize the use of been utilizing WIHD services for 17 years. generic health and mental health services for people with intellectual disabilities, a strategy which often NEW TECHNOLOGY AT WIHD: includes active policies and recommended practices HEALTH CARE CHALLENGES & designed to facilitate access to general health and psy- chiatric services. This sort of care includes calls for SOLUTIONS close collaboration between general and specialist ser- vice providers, with clear pathways for the transfer of New technologies at WIHD have been developed to aid

56 ABILITY people with intellectual disabilities and mental health care coordination among the medical care team, the ben- problems between specialist and generic mental health efits of remote care management, and the advantage of services, as well as plans for joint care where necessary. close communication between patients and their health care team. In many ways, the coordination of health care delivery and access between generic and specialist service THE NEW CENTER ON DISABILITY, providers is the same across all patient groups, however, HEALTH AND TECHNOLOGY AT WIHD: the often extensive health co-morbidities among persons with intellectual disabilities present their own chal- ADDRESSING HEALTH CARE NEEDS lenges. Additionally, many health care systems find FOR PEOPLE WITH DISABILITIES that effective care of people with chronic health prob- lems requires very targeted interventions and closely Today, self-management health education and health coordinated generic and specialist care—something promotion programs are not targeted or adapted for peo- which these systems often have difficulty providing. ple with intellectual disabilities. As such, they do not Because of these limitations, much has been made of the address difficulties in developing an understanding of the promise of electronic health records and the possibilities effects of the behavior of people with disabilities on the of telehealth strategies for achieving more coordinated health of the individual. Additionally, few of these pro- and better care, as well as improved health outcomes. grams include attempts to educate health care profes- However, to date these innovations have not become sionals in working collaboratively with people with fully integrated into mainstream health care delivery. intellectual disabilities and with their caregivers in com- munity-based health programs. WIHD’s goals for innovative health and mental health services are built upon the use of accessible information The work of WIHD’s new Center on Disability, Health and communication technologies, exploring the possi- and Technology is designed to address all of these impor- bility of truly integrated health care delivery models tant issues. Its mandate for the promotion of health and with technologies that are designed to ensure that they well-being among people with intellectual disabilities always promote self-determination in health care for includes the development of effective health promotion people with intellectual disabilities. These exciting tech- interventions, the examination of risk factors and mea- nologies can also remove barriers to the use of effective sures of health, functioning, and disability, and the evalu- health care models through improved health literacy and ation of the potential for existing and emerging informa- health promotion strategies. tion, communication, assistive and smart technologies to enhance the health of people with disabilities. This powerful shift in focus toward innovation in the This organizational mandate builds on three areas of tech- promotion of self-determination in health care builds nological innovation to create accessible health care sup- on the voices and experiences of those who are directly port. The first such innovation is the development of an involved and affected. Among the critical elements in online health education training curriculum designed to this approach are the creation of individualized health be fully accessible by people with different cognitive and care plans and the use of self-management education communication abilities. programs—an endeavor which stresses the importance of use of an electronic health record to promote effective This curriculum, “My Health, My Choice, My

ABILITY 57 Responsibility” can be accessed using the touch-screen potential of many current personal computer technolo- gies from full-size desktops to small ultramobile com- puters and cellular phones. The program is incorporated into a customized patient-provider portal called “Desk- top Discovery,” which is developed by the WIHD acces- sible information and communication technology partner AbleLink Technologies. The image in Figure 1 [left] shows the icon for this curriculum on the touch screen of an ultramobile personal computer. Touching the image produces a verbal description of what the icon repre- FIGURE 1 sents, with the instruction to touch the image again to run the application. Additional images represent other elements of a custom interface, each specific to an indi- vidual patient.

“My Health, My Choice, My Responsibility” [Figure 2] covers a range of topics over an eight-session program. It can be used in small groups, facilitated by health edu- cation and self-advocate trainers, or as an independent online resource. Session topics include such areas as:

•Maintaining a healthy lifestyle •Setting goals, getting support, and developing a health plan •Knowing your health history FIGURE 2 •Understanding your own health and wellness needs •Preparing for medical appointments Figure 2: The screen display for the online curriculum, “My Health, My •Speaking up for good health Choice, My Responsibility”, software designed to integrate with the elec- Online resources also include tools for developing a per- tronic health record system used by WIHD and provided by its EHR record provider CureMD. sonal health care self-management plan and for collect- ing health and health management information.

Accessing the Home Care icon in Figure 1 leads to a customized set of self-management or home care tasks

FIGURE 5

FIGURE 3

FIGURE 4

Figure 5: The screen display for Nutranet, a self-directed picture-based meal planning program to facilitate independent living and nutrition education.

Figure 6: The display screen for Health Quest, an accessible survey with tools to enable individuals with intellectual disabilities to become active participants in their own health and wellness.

58 ABILITY patient self-reports on symptoms and care compliance in an online survey called “Health Quest” [Figure 6].

All of these accessible technologies can easily be customized using built-in software applica- tions located on an individual computer, and can be “pushed” out to a patient using the resources built into WIHD’s Electronic Health Record (EHR). This application, produced by WIHD’s EHR technology partner CureMD, contains the full complement of EHR resources as well as a custom patient/caregiv- er/health care provider portal. Full customiza- tion allows for the easy generation of targeted health records and health information, which can be accessed electronically or printed.

THE FUTURE OF ELECTRONIC HEALTH TECHNOLOGY AT WIHD

Under the Care Efficiency and Affordability that can be customized to meet the health care needs of Law, a two-year grant has been awarded to the individual. In the example shown in Figure 3, an WIHD from the New York State Department of Health. individual with a disability can use the display to access The aim of the grant is to demonstrate how the use of links to video clips which show personal care assistants Telemedicine strategies can enhance primary care the appropriate ways to help with mobility or personal access for individuals with intellectual disabilities, care issues. reduce the inappropriate use of emergency rooms, and improve care for those suffering with chronic diseases. For someone who does not have a disability, the personal computer display might change during the day to provide WIHD has also received a five-year grant from the prompting and coaching through a critical health care Administration on Developmental Disabilities, as part task [Figure 4]. This technology has been used on indi- of a consortium of University Centers for Excellence in vidual smart phones to coach dental patients with very Developmental Disabilities to develop and demonstrate poor oral hygiene practices through an effective oral model curricula for the enhancement of self-determina- tion in health.

By enhancing its organizational practice of making advancements for people with intellectual disabilities, WIHD furthers the goal of empowering people with dis- abilities to take charge of their own health care. John Maltby, whose son Andrew has been receiving services at WIHD for the past 16 years for a seizure disorder, says that Andrew now has no fear or concern about vis- iting WIHD doctors and feels completely involved in his own health care. “Every program at WIHD is infused with the principles of respect for the role of the family,” Maltby said, “as well as for self determination FIGURE 6 for the individual, and a continual striving for best prac- tice in the field.” Armed with its new initiatives, WIHD continues to work to reduce the often critical health dis- hygiene program. “Janice,” the application might say, parities among people with intellectual disabilities, and “after you eat every meal, you need to go get your brush to address problems that currently disadvantage today’s and your toothpaste and brush your teeth.” health care delivery. by David O’Hara, PhD Limitless aspects of additional self-management support Chief Operating Officer, can be made available to an individual through cus- Westchester Institute for Human Development tomized information, or through the use of tools for nutrition management [Figure 5], as well as through wihd.org

ABILITY 59 60 ABILITY ACROSS 1. Winner 4. Ocean’s Eleven actor whose volunteer work helps autistic children to “catch a wave”. Scott ___ 7. The first person without arms to receive a black belt from the Tae Kwon Do Association in America. DOWN Jessica ___ 1. Offer free service to the community 9. __ Mans car race 2. Trophy 10. Race unit 3. Retreat 11. Illinois representative who introduced the Inclusive 4. South African leader in disability rights who has been Home Design Act to increase the number of homes built named the Special Rapporteur of the Commission for with federal money that are accessible for people with Social Development for 2009-2011. Shuaib ______disabilities. Jan ______5. Soothing juice 14. Strong and healthy 6. Fresh 15. Science fiction writer, __ Doc Smith 7. Wedding reception centerpiece 17. Jottings 8. Windows system 19. Another name intro 12. New Haven locale 20. Dover locale 13. Go out with 21. “The right way to __ is to __.” (Anon) 14. Salad cheese 22. Football occurence when scores are tied (abbr.) 16. Former wife of a Beatle, who competed on Dancing 24. Entrepreneur's degree, for short with the Stars on her prosthetic leg (first name) 25. Champion for children's health and protection of 18. Bathroom dryer people from tobacco products through legislation (2 20. Actress who had 50 first dates words) 21. Gun or King? 28. Be indebted to 23. Strange 29. The English Patient actor whose character suffers 24. “I did it __ way” from burns and disfigurement (first name) 26. Oui's opposite 33. Much used two-letter Scrabble word 27. “The” in German 34. Chris Pendergast's famous journey, “____ for Life” 30. Over 36. Business promotion 31. Type of TV 38. Alternative maker 32. Overcome, despite obstacles 39. Chooses 33. They speak louder than words 42. Great composer who only “heard” his music in his 35. Cooked sufficiently mind 37. Paraplegic character and writer of Born on the 43. Simpsons' character Fourth of July, played by Tom Cruise in the film. 44. Canadian's favorite question? Ron ____ 46. Speech-impaired main character of The Piano 39. President who declared a federally-recognized 47. 1991 Danielle Steele novel and TV series about a National Day of Service and Remembrance photographer who is paralyzed by a horse riding 40. Protection accident. 41. Teach 51. A ___ do attitude 45. Get better 52. DiCaprio character in What's Eating Gilbert Grape 48. Catch in the act who has learning difficulties 49. The loneliest number 53. Santa checks it twice 50. __ , the people 54. Famous inventor whose wife could not hear; while trying to help her, he discovered the telephone

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