ABILITY Magazine - Shemar Moore Issue

MAGAZINE

VOLUME 2009/10

SHEMAR MOORE

DEC/JAN

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2009/10 SHEMAR MOORE DEC/JAN

2

ABILITY

ABILITY 3

M ANAGING E DITOR Gillian Friedman, MD

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

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

C

6

Quads ride in South Africa p. 38

HUMOR — A Toast to Santa

Liz Angeles Diane Chappell Dahvi Fischer Renne Gardner Sonnie Gutierrez Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

ASHLEY’S COLUMN — Abroad with Down Time

12

BOOK EXCERPT — Get Off Your Knees

16

POWER SOCCER — More Than a Goal

18

ALIA MALEK — Amreeka the Beautiful

22

BOOK’S COVER — Judging Between the Lines

24

HOLLYWOOD FORUM — IAMPWD, Disability and Actors

28

MULTIPLE SCLEROSIS — MS v SCI

30

THE SQUIGMAN — Squeaks by with Craftily Acting Saucy

34

LIFE ROLLS ON — More Fun Than a Barrel of Jesse’s

Scott Johnson Guy Uesugi

38

QUADS 4 QUADS — Riding Four Ways From Sunday

P HOTOGRAPHY

40

BAD BOYS — EEOC Tackles Job Discrimination

42

DREAM WRITER — How to Write Right in the Light

44

MOORE CARE FOR A CAUSE — Hollywood’s Hunky Helper

54

ABILITY HOUSE — Building Dreams

56

INNOVATIONS FOR ACCESSIBILITY — Wired for Better Health

61

CROSSWORD PUZZLE — Oops, Last Issue’s Correction

Extremity Games

11

H EALTH E DITORS

Larry Goldstein, MD Natalia Ryndin, MD

Paralympic Games Beijing

Shemar Moore p. 44

C ONTRIBUTING W RITERS

Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Dana Nelson Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes David Lander p. 30

W EB E DITOR Joy Cortes

Music Within

G RAPHIC A RT / I LLUSTRATION

Actors event p. 24

Nancy Villere— CrushPhotoStudios.com ABC Studios Michael Darter

T RANSCRIPTIONIST Sandy Grabowski ABILITY’s Crossword Puzzle

O

N

T

E

N

T

S

E DITORS

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Liz Angeles Andrew Spielberg Alia Malek p. 18

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

WWW.ABILITYMAGAZINE.COM

EDITORIAL

editorial@abilitymagazine.com

ADVERTISING

For advertising information e mail advertising@abilitymagazine.com or call 949.854-8700 ext 306

DISTRIBUTION

Warner Publishing Services A Time-Warner Company Faxon - RoweCom Library Services Ebsco - Library Services Swets Blackwell

CORPORATE SHIPPING 8941 Atlanta Ave. Huntington Beach, CA 92627 Tel 949.854.8700 TTY 949.548.5157 Fax 949.548.5966

NON-PROFITS Ashley Fiolek p. 11

ABILITY Awareness/Fuller Center Habitat for Humanity

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.

POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2009/10 Shemar Moore Dec/Jan Printed in U.S.A.

The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © 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 corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilitybuild.org info@abilityawareness.org abilityawareness.org

toast to Santa

a

I

t was colder this year at the North Pole. The summer had brought about a record snowfall, and the drifts were higher than Robert Downey, Jr. The wind chill had dipped lower than the OJ Simpson dream team, and apathy had settled in like a flea on the back of a slobbering Saint Bernard.

Santa sat in his Lazy Boy with his pants unsnapped, watching a college football game. Notre Dame was taking on Southern Cal in the Toilet Bowl, and Claus was a big USC fan. (Whenever the announcer would mention “Trojans” it always made Santa giggle.)

“Throw the damn ball! You run like a snowman in a tar pit!” Santa yelled. Mrs. Claus entered the room, carrying a plate of sugar cookies.

“Santa, it’s just a game,” she said as she sat the snacks on his beefy lap.

Santa had grown old and tired. He was no longer interested in bringing joy to millions of children. He just wanted to retire, sell Toyland, and move to Miami to golf and count ballots. He had put in his time: 623 years, to be exact. Jolly Old Saint Nick had become bitter and antsy. To stifle the lingering discontent, he had started drinking, gambling, smoking cigars, and eating Prozac like it was gingerbread. He had gained 265 pounds and was constantly wheezing. His ear and nose hairs were almost as long as his yellow, tainted beard.

As if that weren’t enough, his fingernails were the length of candy canes, and he refused to leave the house for fear of germs.

“ESPN said it was a lock. Rip up Berman’s list. He gets coal this year,” Santa grumbled.

The toy factory, too, was in disarray. The elves were no longer being drug-tested. They were sleeping in after all-night parties, and sexual harassment complaints were on the rise. The reindeer farm was in shambles. The barn was in dire need of four walls and a roof. Piles of dung littered the snow, resembling a carton of Ben & Jerry’s Chunky Monkey ice cream. The animals hadn’t eaten for weeks and were almost as thin as Calista Flockhart. The only way they could fly was on a 767.

“Well, it doesn’t look like anyone’s getting anything this year. I’m sure the kids—”

To her credit, Mrs. Claus had tried her best to motivate her husband. She made his favorite dishes, massaged his

“I’ve got 500 beans riding on this, and I’m giving away seven and a half points,” Santa snapped.

“You promised you weren’t going to gamble anymore after the bookie took the sled,” said Mrs. Claus.

6

“Oh, don’t start!” Santa yelled. “Do not start with the kids! I work my tail off all year for ‘the kids’ and whatta I get? Milk and cookies! Go get me a beer.” In a huff, Mrs. Claus walked away.

ABILITY

flabby love handles, and even dressed up in a tight Easter Bunny outfit to see if that would get his eggnog pumping. But it was to no avail. The jolly man wasn’t looking for jollies anymore. His life had lost its zest— and we’re not talking soap. Meaning had hopped a bus to Chicago. Purpose had taken a train to Denver. Ambition? Well, let’s just say that was on a slow boat to China, looking to link up with a fluffy, unattached Panda Bear named Ding-a-ling.

Christmas was just around the corner and down 34th Street. Things did not look good. Santa was now up to three fifths of Smirnoff a day and his nose was so red that if he did venture out on Christmas Eve, he could likely guide his own sleigh. The alcohol had made him irritable.

At the drop of a mistletoe leaf, he would fly into a rage.

Elves would tease him by sticking “kick me” signs on his back, putting mascara on his face when he passed out, and hiding wet, sticky gumdrops in his beard. The reindeer had all kept their distance ever since the night that Santa, in a drunken stupor, had staggered into the barn and jumped on Blitzen’s back, yelling, “Yee haw! Get along little dogie!” When the frightened animal tried to buck the heavy oaf off, the intoxicated slob vomited on its head and fell to the ground laughing. The members of the traumatized sled team all huddled in a corner, quivering and fighting to hide behind one another.

asked. The man shrugged and grumbled, “Who knew?”

In his previous life, the Ghost of Christmas Past had been a Catskill’s comic known for his reliance on oneliner jokes. His material was so bad that audiences would bombard him with whatever food they had in front of them. One night, during the second set, an under-ripe squash made contact with his skull. It put the hack in a coma from which he never recovered. Ironically, the vegetable had rendered the man a vegetable.

But just before the comedian had died, the hospital nurse swears she heard him mumble, “Take my life... please.”

The ghostly, funny man took a long puff of his cigar and then exhaled a roomful of smoke. When the secondhand smog had cleared, Santa and the comic found themselves standing at the foot of a rickety bed. A frail, dying woman resembling a young Phyllis Diller lay covered by a green and red Afghan. Her wrinkly head was propped upon a goose-feather pillow, and a small boy stood next to her, feeding the withering hag some cocktail peanuts.

“Great balls of popcorn! That’s my, my mother!” Santa exclaimed. “Momma, Momma! It’s me, Nicholas!”

Santa called out.

“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 he may have made it to the sofa, but that’s pure speculation.) Next to him, a roaring fire crackled. Luckily, it was in the fireplace. As the lumpy lush lay on the floor, snoring through his crusty whiskers, a bright light illuminated him.

“Who’s that small boy?” asked Santa “Listen to you,” the comic quipped. “When they passed out brains you must’ve thought they said trains and taken one to Albany. That’s you, ya little brat.”

“But my hair was red, not black,” Claus said.

He struggled to open his eyes, grumbling, “You damn elves leave me the hell—” But a vision halted his sentence. Santa’s blood-shot pupils focused on what appeared to be a short, old bald man dressed in a cheap suit and smoking a cigar.

“Where did you come from?” Santa slurred.

“I just flew in from Purgatory, and boy do my arms feel guilty,” the ghost joked.

“Yea, well, color flashbacks ain’t cheap, and ‘dis comes out of my pocket, tubby,” the comic responded.

“I’m sorry they were out of cashews, Momma,” the young boy said, placing a beer nut on his mother’s dry tongue.

“That’s all right, Nicky,” the woman gasped. “Just 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.

“I’m da Ghost of Christmas Past. And speaking of Christmas, last year my wife put a bow in her hair and wanted me to unwrap her. I exchanged her for a tie.” A quick drumroll and a cymbal crash came from somewhere above. Santa just stared at the man.

“But, I thought you wanted me to be a lawyer, Momma,” said the young Claus.

“No, oh no, you’ll never get to Heaven that way,” his mother coughed as she patted his tiny head. “Go with the toys, my boy. Go with the toys.”

“Oy vey, tough crowd,” the ghost snapped. Shaking it off, he grabbed Santa’s arm and said “Let’s go Slim, we gotta look back on your life.”

“I promise, Momma. I promise,” the tyke answered.

At the foot of the bed, Santa mumbled, “The toys...” as 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 tattered head resting on an empty bottle of Wild Turkey.

Sitting up, he grabbed his throbbing skull and groaned in pain. “Ho, ho, holy snowballs, I should’ve put more ice in the glass.” A loud noise startled him as Mrs. Claus pushed a reverberating vacuum cleaner into the room.

Santa pulled himself onto the couch. Huffing, he leaned over and bellowed, “Turn that thing off!”

“Didn’t I put some golf clubs under your tree one year?”

Santa recalled.

After several overt strokes of the Red Devil, she clicked off the machine. “Did you enjoy yourself last night?” she coldly inquired.

The twosome found themselves in the toy factory. The place was a mess. Littering the floors were dolls without heads, wagons without wheels, stuffing seeping from fuzzy animals and toy soldiers missing uniforms. In fact, there wasn’t one completed toy. “Holy night!

What’s happened to the toys?” Santa gasped.

“Don’t start on me. Do not start,” Santa said in his best Ralph Kramden tone.

“Is there or isn’t there going to be a Christmas this year?” asked his wife. “Because I need to know. If not, I’ll just throw the sugar plums out. There’s no use in keeping—” “Enough, woman!” Santa yelled, as he made his way over to the dry bar. Trembling, he began to mix a Bloody Mary as Mrs. Claus started the vacuum again.

Santa took a sip of his drink, made a sour expression, then added some Tabasco sauce. He looked in the mirror. His face resembled the surface of Mars, with craters and deep canals burrowing from the chin to the forehead. “The toys...” his mother’s raspy voice whispered, as Santa remembered his dream. Mrs. Claus finally turned off the vacuum and started to walk out.

“Did you see an old Jewish man here last night?” Santa asked her. “He told jokes and, and...carried a violin.”

Mrs. Claus just glared at him. “You’d better get some help, fat man,” she snorted as she stormed out.

By 7:00 that evening, Santa was half-in-the-bag, literally. He had climbed into one of his burlap sacks that typically hold presents and had fallen face-down on the newly-swept carpet. All day he had polluted his body with a mixture of tequila, Bacardi rum, and a splash of eggnog. It wasn’t a pretty sight. Disgusted, Mrs. Claus had gone into town to shop for some scented candles and a brick of cinnamon botanical potpourri. As a result of his afternoon binge, the chubby man drifted off to Tipsy Town.

Santa was awakened by a crooning version of “White Christmas.” In the corner of the room sat a man with droopy cheeks, casually smoking a pipe. “Hey ba, ba, boy,” his low, bass voice rumbled. “Looks to me like you been dipping in the sauce a little too much.”

Santa sat up and rubbed his eyes. “Who are you?”

“Oh, I’m the Ghost of Christmas Present,” the man said as he puffed away. “I was just on the road to Heaven, thought I’d swing ba, ba, by and pick up my wings.”

8

ABILITY

“1938, and a fine set they were. Dunlop XL’s, I ba, ba, believe” the man smiled as he stood up. “Well, come on ba, ba, big boy, we got places to ba, be.” And with that, he exhaled a puff of pipe vapors, and the pair vanished into thin, cloudy air.

“Looks to me like your workers went on holiday for the holidays,” the crooner quipped. From the back room, the sounds of rap music shook the walls.

“What in the Charles Dickens is that noise?” asked Santa.

“Must be ba, ba, buffalo mating,” the smoking ghost said. “It sure ain’t music, ba ba ba boo.”

Suddenly, Santa found himself in the midst of a wild party. Liquor flowed like latte at a corner Starbucks.

Drunk reindeer flew recklessly into walls. Elves danced, bumped and ground, half-naked, on the work benches.

“Quite a show you’re running here, Saint Nick,” the ghost exclaimed. “Reminds me a little of the Play, ba, ba, boy Mansion. I thought your racket was making toys for little girls and ba, ba, boys.”

“Yeah, well, I’m tired of the toy business. Let the Japanese have the market. I’ve had my fill,” Santa belched.

“Sounds like you’re in a ba, ba bit of a pickle,” replied the ghost, pretending to swing a four-iron.

“I’d like to be pickled,” Santa huffed. “Can we get outta here?”

“You know, you remind me of a chubby little sidekick I used to work with,” laughed the ghost. “Always wanted the funny lines. Never wanted to give. Poor fella got the laughs. Me, well, I just wound up with the ba, ba, beautiful girl.”

“You stuttering idiot,” Santa sneered. “Is that why you brought me here? To tell me some nonsensical ho, ho, horrifically lame story?”

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 pah-rum-pa-pum-pum.”

“I need a drink,” Claus mumbled.

He awoke bright and early the next afternoon to find his wife standing over him. “You know,” she said, “if we had toys this year we could fill the bags under your eyes.” Santa merely grunted. “You smell like a Whoville brewery,” Mrs. Claus cracked.

Santa managed to stumble over to the sink. His hands shook as he filled a glass of water, placed six aspirins on his discolored tongue and washed them down. “And another thing—” his wife began.

“Woman, you’re gonna be the death of me!” Santa burped, his balance uncertain. “You hear me? The death of me!”

Santa shook his head in disgust. “That father’s a selfish louse,” he mumbled.

The couple continued to battle as the young boy snatched his Snoopy blanket and ran out the door. Santa tried to grab him but the little guy just passed right through his body. “Where’s he going?” Santa asked the ghost. “It’s snowing and freezing out there!”

“Tha, tha, that it is. But it’s warmer out there than it is in here,” the ghost replied.

“What happens to him?” Santa questioned.

Enraged, Mrs. Claus threw one of her fuzzy boots at him, barely missing his head. “Ho, ho, ho,” he snickered.

“Oh, the, the, they find the kid tomorrow morning, frozen, on the side of the road. In the snow he wrote ‘God Bless Everyo’.”

“That does it, you abdominal snowman,” snapped Mrs. Claus. “I’m going to Mother’s.”

Santa’s heart stopped as he struggled to breathe. “Who would let this happen?” he choked out.

Mrs. Claus stormed out of the room in tears. Santa kicked the Christmas tree and ornaments and bulbs shattered on the floor. With craziness in his eyes he slurred, “I don’t need anybody.” But Santa was wrong. That night, the irate alcoholic invited Johnny Walker and Jack Daniels over for a party in his belly.

The bickering spouses emerged from the back room. The man smoked a Marlboro Light and scratched his full, white beard. He held a bottle of Boone’s Farm wine, wore boxer shorts, and sported a tank-top T-shirt that read “Bite Me!” under a small Budweiser logo.

As usual, the hefty, alcoholic sponge fell into an intoxicated slumber. And, as usual, a ghost woke him up. “Ra, ra, ra , ra, rise and sha, sha, shine, Harvey, I mean Santa,” the tall, skinny apparition stuttered. “I’m the ga, ga, ga, ghost of Christmas Future.”

“Can’t you ghosts just give me one silent night?” Santa whined.

“Wa, wa, wa, well, we, we could, but wa, wa, well, it wouldn’t be ra, ra, right, by golly,” the ghost replied.

“Alright, let’s get this crap over with,” moaned Santa, reluctantly.

“Le, le, le, let me see if I remember how to do this li, li, little effect,” the spirit said. The ghost held a cigarette up to his mouth and lit it. He began coughing out smoke. “Ga, ga, good stuff!” he wheezed, as the room became hazy.

The two time travelers found themselves standing in a run-down trailer. Dirty dishes and a Confederate flag decorated the room. A small boy sat in the corner, weeping. “That poor little fella. Why’s he crying?” Santa asked the ghost.

But before the ghost could respond, voices from the back room grew louder. “Whatta ya mean you spent your paycheck at the bar?” a woman screamed. “You were supposed to buy Tiny Tom a Razor Scooter! That’s all he wanted for Christmas!”

Recognizing himself, Santa wavered in shock as the ghost attempted to steady him. His face went sick and pale.

“Wha, wha, well, what did you expect? A wonderful life?” the ghost said.

Morning had arrived at its designated time as snow gently floated past the window. The house was quiet except for a mouse stirring...his coffee. And Santa was down for the count again, curled up under a sheet of wrapping paper. It looked like Christmas was going to take a “time out” this year.

Suddenly, oh what a sight, Saint Nick sprang in the air like a Laker guard. He bulled his way through the furniture, and oh what a clatter! He ran to the window and opened it wide. He called down to an elf who was carrying a keg. “What day is it, my fine, short-statured friend?”

“Why it’s Christmas day, sir,” the elf answered. Santa’s lips quivered as tears flooded his eyes. The elf looked up and smiled. “I’m just yanking your chain, tubbo. It’s only Thanksgiving.”

“D’oh! Santa said, gritting his teeth.

“Why you little—” “Hey,” the elf continued, “Why don’t you grab a couple of bottles and come over to the factory. We’re having ABILITY 9

a Macy’s Day Parade and we need a float.”

Santa slammed the window shut. “As God is my witness, there will be a Christmas this year!” he vowed.

Santa tore open his closet doors. He ripped his red outfit off the hanger. With the strength of six Grinches, plus two, he sucked in his beer gut. He wiggled then jiggled ’til he could wiggle no more. He was getting in those pants, that was for sure.

He waddled over to the bathroom sink, trimmed his beard and cut his nails. (That’s right, Claus clipped his claws). Now it was time for business. He gathered every ounce of liquor in the house and, sweating, flushed it all down the toilet. It felt good—then bad—then good again. Some say Santa’s liver shrank ten sizes that day.

The reindeer and elves were partying and living la vida loca when the door to the factory crashed inward. An axe-wielding Santa announced in an eerie Nicholson voice, “Heeeere’s Kringle!”

“Look!” cried a drunk elf, “It’s the bearded drunk!” The workers burst into laughter.

“Ho, ho, hold it down my ‘faithful’ workers,” Santa calmly said.

“You’re the one who can hold it down!” Rudolph yelled.

“Well then, what’s everyone standing around for?”

Santa yelled. “We’ve got toys to make!” Sobriety instantly filled the air, sending the workers scurrying to their stations.

The elves worked around the clock, cranking out toys by the minute. Reindeers practiced take-offs, rooftop landings, and built up their stamina for the arduous journey. In his shed, Santa busily constructed a sleigh. Mrs. Claus returned to gather some knickknacks she had left behind. (Like any woman, she had a fondness for knickknacks.)

Unbeknownst to Santa, she was also carrying divorce papers. When Santa saw his wife, he swept her up in her arms and said “I love you, Mrs. Claus!”

She looked at his glowing puffy face and knew he was sober and that he meant every word. She smiled and said, “I love you, Santa Claus.” The jolly man twirled her around and around until she threw up on his hat.

It was Christmas Eve and the elves had just finished packing up the sleigh and harnessing the reindeer.

Dressed in his gleaming red suit, Santa sat at the wheel.

Mrs. Claus ran out of the house holding a tin of cookies and a fruitcake. “Wait!” she yelled. Santa climbed down off the sleigh. “The doctor just called,” Mrs. Claus said.

“Oh, no, no, no. Is my cholesterol count too high to fly?” Santa asked sadly.

“Yeah, a whole gallon!” Herbie, the elf, added.

Santa smiled and casually walked among the pint-size party rebels. “It appears what we have here is a failure to communicate,” Claus remarked. “We’ve got some toys to make. Now, we can do it the hard way or the easy way. So, what’s it gonna be, ba, ba, boys?”

“Ho, ho, ho! It’s a Christmas miracle!” Santa exclaimed.

He picked his wife up—but decided not to twirl her around this time—and kissed her.

Squatty, the biggest of the elves (who towered at threefeet-eight-inches), boldly stood up. “We don’t take orders from drunks,” he snickered.

“Now you get going,” Mrs. Claus said as she handed him some treats. “Here’s some snicksnacks for your ride.”

“Is that right?” Santa asked as he looked around the factory. Cocky, the elves and reindeer nodded in unison.

Santa climbed back onto the sleigh and fastened his seat 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.

Everyone raised their cups and cheered. The stout man leaned over the beer barrel, but instead of pouring himself a draft, Santa picked up the keg and crashed it over the head of Squatty. The eyes of the big (tiny) elf rolled back in his head and he collapsed into a crate of Rudy Toot Toots.

A pine needle could be heard hitting the floor. “Anyone else?” Santa asked.

With eyes agape, everyone shook their heads in fright.

10

“Your cholesterol level is fine and your blood pressure is normal,” she beamed. “I’m pregnant!”

ABILITY

An elf in the tower responded, “You have clearance, Claus.”

With a tug of the reigns, the jolly man yelled, “On Dasher, on Dancer, on....on...ah, you know your names.”

Then up to the sky the sleigh started to cruise.

There would be a Christmas!

Now that St. Nick’s off booze.

“Ham on a Roll”

by Jeff Charlebois

W

e’re in the middle of what is called “down time” in women’s motocross. This means we’re done with our racing season and that I won’t start back up again until April, when I head on over to Europe to race in the women’s FIM racing series. As you might remember, I broke my collar bone at the end of my season this year (and had to have surgery) so this has also been my healing up time.

While in Europe last season, I became very close with my mechanic and his family. My mechanic has two daughters who are both close to my age and we all became very good friends. We often talk on webcam and keep in touch through emails and text messages.

At the beginning of last year’s season, I told myself that if I won the WMX championship, I would take a trip to Belgium. Fortunately, I won the championship, so I booked my ticket and headed over to Belgium for 10 days! I happened to be there during Belguim’s “holiday,” so every day we did something fun and exciting. I got to meet new people and try new foods and had some great experiences. Everyone thought I was nuts to visit a different country even though I am deaf. But by the end of my trip, I was speaking Dutch (the language of Belgium) and my friends and their family members were all signing!

Traveling overseas is pretty exciting and I didn’t have any problems. In fact, the most stressful thing was exchanging my American money for Euros. Belgium also has the best chocolate ever! It’s so good, I brought 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 skydiving hours. Fortunately, he said I could come along, so I will be jumping tandem with a professional skydiver.

I’m hoping I can also squeeze a few snowboarding trips in between training, riding and skydiving.

During my non-racing season, I often do some autograph signings for some of my sponsors. T-Mobile, one of my sponsors, recently sent me out to a communications expo in Ontario, CA. It was pretty cool. Honda brought my championship bike to set up and I got to sign autographs and meet new people. I have a few friends out in Cali, so when I was done with the expo, I got to hang out with some of them. We all went to Pole Position (which has really fast go-karts) and went through a few races. In a couple of weeks, I’ll be going to Washington, DC to sign some autographs at the opening of a new T-Mobile store. Red Bull will also be on hand there to pass out some free drinks. Pretty sweet!

This week, I fly back out to California for the 2010 Honda photo shoot. This is where we take all of our media photos for the upcoming year and where photographers take the pictures they’ll use for the posters we sign at all of the races. I’ll also be doing some interviews out there and will get to meet up with my team again.

In other news, I went to the doctor last Monday and was finally cleared to start riding again because my collar bone has healed. Yeah! I rode once last week and will also get to ride while out in California at the photo shoot. Then, once I get back home, it’ll be time to start riding and training for my 2010 season.

So, even though this is my “down time,” you can see there is still plenty going on. It may seem pretty crazy and hectic, but I wouldn’t trade my life or my career for anything.

Ashley (in hat), with Belgium friends, stands in front of her lucky number, 67. 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 accolades as a top-billing account executive. Married with three children, he enjoys being an “arms-on” dad, volunteering 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 maddening, 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

T

A

s the summer after high school graduation fades, incoming freshmen await the start of college with some universal questions: Am I choosing the right major? Can I handle the workload? Will I get along with my roommate? But for John Robinson, determined to succeed in his first taste of living away from home, there was an important additional hurdle: can I learn to fasten my pants on my own before classes start in the fall? Fortunately, Robinson was able to solve the dilemma with the help of a seamstress friend and some variations on Velcro® fasteners.

Robinson was born a congenital amputee. His arms end at his elbows, without hands. His lower legs are attached to his hips, without knees, and he stands threefoot-nine as an adult. A graduate of the S.I. Newhouse

12

ABILITY

here are a few things I’ve come to accept regarding my physical disability: (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.

You see, the most important skill I’ve acquired as a person with a disability is that I am keenly aware of my first impression and how it might affect others.

Generally, that first impression of me causes shock, awe, or surprise, and that’s not what I want people to remember. I want them to remember me for the person I am on the inside, not just what they see on the outside.

It’s not easy to do, especially in the sales world, where first impressions are everything. But if I can get a potential client to put aside what I look like and at least think about who I am on the inside (educated, responsible, hardworking, funny, very knowledgeable about the TV industry), it’s ultimately to his benefit.

I have spent a lifetime trying to overcome and block out

people’s first impressions of me, but there have been some memorable failures. In 1998 I flew to Norfolk, Virginia, to interview for a sales job with an NBC affiliate. The sales manager was to pick me up at the airport, but had no idea what I looked like, other than that I would be wearing a shirt and tie. I chose not to reveal my physical disability to him beforehand because I didn’t think I had to; after all, would someone who is African-American be expected to tell a potential employer she is black?

When I arrived at the airport, the guy walked right past me. I knew it was him, and I was certain he knew who I was because we were the only two people at the airport dressed for business. I chased him down and said, “Are you looking for John Robinson? I’m John.” He immediately did a double take. There was an uncomfortable silence, and I could see that he was embarrassed. The interview might as well have ended right there, because I could tell by his reaction he was uncomfortable with me, and I didn’t want to work with someone who was more concerned with how I looked than whether I was a good salesperson. I did learn a few valuable lessons from this experience, however. From that point on, I made sure to tell people in advance about my outward appearance, even though I didn’t think it was necessary or appropriate. The experience taught me that I should be comfortable enough to say, “Hey, I have a physical disability, and you should know it.” Invariably, what happens is the potential employer or client says it doesn’t matter, but whether it does or it does not, at least he knows. It shouldn’t be important, but to an older generation that may be less accepting or educated about these physical differences, it might be.

That point brings me to the second lesson: it is my responsibility to come prepared for whatever reaction people have toward me. If I can sense someone is uneasy, I’ve got to do my best in those first few minutes to make him feel more comfortable. The unfortunate part about the Norfolk experience was that I wasn’t concerned at all about first impressions or what I’d say during the interview process. I was supremely confident I could do the job. I was more worried about getting on and off the plane, how I was going to carry my bag, and whether I could find a suitable bathroom to use at the airport. It never crossed my mind that the sales manager might have a problem with my appearance. I wasn’t ready for that kind of response, nor was I capable of defusing the situation.

It’s not easy to make people forget their first impressions of you when you stand less than four feet tall and when they can’t see you when you’re standing on the other side of their desks. To overcome that obstacle, I try to get them to talk about themselves as quickly as possible, which shifts the attention away from me. I might try to interject a little humor or find some common ground with that person. For example, if I see that he has a Syracuse diploma on his wall, I’ll find out right

away if he is a sports fan and get his take on the Oranges’ new football coach or their most recent basketball game. Maybe she has a Cleveland Browns banner on her wall, in which case I’ll make sure to poke fun at her for my Pittsburgh Steelers’ most recent demolition of her team. What you can’t do is have a negative reaction or no reaction at all, because it will just make the person feel even more uncomfortable. In the sales world, you have to put the client at ease, and humor is one way to break the ice and get the client to engage you in conversation. Usually, people are so surprised by how I look that they immediately let their guards down and become more curious about me. Once I get them interested in me, then I have the opening I need to start talking about them and what their needs are.

There are two kinds of reactions I see when people first get a look at me: either they’re surprised and embarrassed and just want to get on with business, or they smile right through, at which point we both can laugh a little bit. I have to read people and see how uncomfortable they are through their initial reactions toward me.

One thing that has helped is my interaction with kids.

When kids meet me, they have the most unfi ltered reactions: “Why do you look so funny?” “Why are you so short?” Where are your hands?” Kids will say anything, whereas their parents will bite their tongues. Parents might think these questions privately, but they’ve been taught not to speak them. Some kids addressing me have embarrassed their parents to the point that they are pulled away from me or, even worse, screamed at! I immediately tell the parents that questions are okay. Kids see eye to eye with me, so they can’t understand why their parents would get angry at them. Their reactions are normal and honest, and they probably reflect the same response adults have toward me. Let’s face it, when a child sees me in the grocery store and says, “See, that guy has no hands,” she is right.

Learning how to deal with children has helped me better manage my first impressions with adults. I answer the kids’ questions, make light of the fact that I am different, and try to be as positive as possible. It’s the same thing I do with adults. That doesn’t mean I’m always perfect. My wife, Andrea, likes to remind me that in one very angry moment I said to an especially obnoxious child, “It’s because I didn’t eat my vegetables.” That one had the child’s parents laughing while he cringed. It was one of my better jokes, but it’s one that I try to keep under wraps now.

Once I get beyond the initial first impression, I still have to make a sale. I have to sell my abilities to the potential employer or client and convince him that I do have something to offer his business. Before I got my fi rst sales job with WSTM-NBC3 in Syracuse in 1994, I interviewed with about twenty other stations. I had the degree and the know-how to get any one of those jobs, but I didn’t have enough job experience for it to be the tipping point. They could all cite my lack of experience ABILITY 13

for not hiring me, although I’m sure if I were able-bodied I would have landed one of them.

Eventually, what it came down to at WSTM is that I really wanted to sell for them and I found somebody I could connect with, someone who looked beyond my appearance and bought into the fact that I was a viable candidate. Still, even after I told the sales manager I’d work for the station at 100 percent commission, he had to convince his boss that I was someone worthy of hiring.

His boss’s chief concern was, “How do we fire this guy if it doesn’t work out?” Fortunately, they gambled on me.

I had all of the things they needed in a salesperson: I was eager to work, I was willing to make sales calls, I was memorable (more on that subject later), and I could talk about television as a product. During the interview, the sales manager who hired me, Bob Eckel, said, “Sell me this coffee mug.” Instead of saying, “Here’s a mug—it’s white and it’s durable,” I said, “Here’s something that will get your morning off to a great start.” It was exactly what he wanted to hear because he didn’t want me selling the mug; he wanted me selling the coffee that was in the mug. That’s what all owners want.

They advertise with you because they want more patrons to walk into their stores or places of business.

They don’t care as much about the actual advertisement as they do about the number of people who see it.

I was willing to accept WSTM’s offer of a 100 percent commission job with no existing accounts because I believed in myself enough that if someone were willing to take a chance on me, I’d take a chance on him. Sometimes you have to make some concessions in order to get what you want; the payoff will come later. It’s all about looking at obstacles as opportunities. Put yourself in the shoes of the employer and ask yourself, “Why do I take a chance on you?” In today’s economic climate, there are a lot of people looking for work and not a lot of jobs to be had. The demand far outweighs the supply.

If you have a physical disability, the odds are stacked even more heavily against you. Seventy percent of all people with disabilities are unemployed!

If you are among that 70 percent, or if you’re part of the growing national unemployment rate, keep plugging away. If you get an interview, make the best first impression possible under the circumstances. Don’t walk in there with a defeatist attitude or a “the world owes you” attitude.

Tell the employer what you have to offer and why you can make a difference for him. If you’re a wounded veteran coming back from Iraq without an arm or leg, you need to think about what you have to offer society, not what you can’t do. You have the kind of technical training and discipline that few other people have; you matter to some employer. Conveying that idea to the person sitting across the table or desk from you is all that really matters. It’s how you get someone to forget that awkward first impression.

14

ABILITY

Of course, if you are a person with a disability, the first impression can work either for or against you. I said earlier that one advantage to being as short and funnylooking as I am is that I am memorable. People are always going to remember me for how I look. And in my business, where first impressions are critical, that fact is a huge plus. There’s a reason pharmaceutical companies hire young, attractive people (mostly women) in sales: they want you to remember who’s 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 few heads. It’s part of the world we live in.

Look at some of the advertisements you see on television. You’ve got these local car dealerships screaming into your sets, trying to set themselves apart from their competition with the loudest, most outrageous promotion they can come up with. Why? Because it’s memorable! Readers in the New York metropolitan area probably remember those Crazy Eddie electronic-store ads from the 1970s and ‘80s with the frenetic lead character screaming, “His prices are insane!” Those ads were widely popular and helped the chain earn more than 300 million dollars in sales.

The television industry is no different from the real world: we’re all trying to stand out and be noticed. If you’re dating someone new, what do you do? You wear your best clothes, look nice, and try to smell good. It’s your way of marketing your best qualities by highlighting your differences. In the sales world, my physical disability is what allows me to set myself apart from my peers. My disability is louder than any commercial or gimmick. But once I have the recognition, I still must provide substance. Just like the attractive salesperson with the million-dollar smile, I’ve got to be able to back it up. I can’t just go in there looking the way I do and say, “Listen to me.” I have to say, “I’m John Robinson.

I’m here to talk to you about something specific to your business, and here’s why you need to listen to me. I can help grow your business. I can drive traffic to your store. I can enhance your image in the community.”

I have to produce that much more, because as the earlier example from Norfolk shows, being memorable isn’t always a one-way ticket to the promised land. Whether you’re a person with a disability like me or a war veteran, burn victim, or short in stature, that first impression is something you have to nail. It can be an opportunity for you, but only if you’re keenly aware of how that first encounter may affect other people. You must be prepared to show them that you’re much more than just what they see on the outside, or on a piece of paper.

Find out what it is you have to offer, whether it’s a job you’re seeking or a relationship you’re trying to further along and, like the maniac in the Crazy Eddie commercials, be passionate. syracuseuniversitypress.syr.edu

ABILITY 15

D

akotah Smith had heard the traditional cries of doubt. “You can’t play. You’re a girl. Girls don’t play sports like soccer.”

But those archaic statements never shook Smith’s determination—she had already faced more difficult doubts.

Her desire to compete, to win, and to be part of a team trumped all the questions anybody ever had. So she went out for a soccer team, and she made it.

“One of the boys on my team, Tiawan, we grew up at a summer camp together,” Smith said. “When I used to want to play sports with the boys, I always heard, ‘But you’re a girl’. Playing on a team with Tiawan, we’re so competitive at such a high level that my role has changed from the nice, feminine, girly type who didn’t want to get hit. Now I can be the most aggressive one on the team.”

16

to be able to be a role model for other kids who may be facing similar challenges in their lives.

“I want them to understand that having a disability doesn’t have to hold you back from anything,” Smith said. “You only let it hold you back as much as you want it to. You can do anything that you want to do.”

But Smith says she didn’t really set out to find power soccer. It found her.

Smith started using a wheelchair at age five, often when she was tired or was traveling long distances. By age 11, she had moved to full-time use, and today she uses a power wheelchair. While attending a yearly summer camp for young adults with muscular dystrophy, Smith met and befriended Tiawan Britto.

Smith, who has muscular distrophy, believes it wasn’t until she started playing power soccer that she discovered she had a strong desire for competition. “That definitely came from soccer,” she said. “When I was a kid, there wasn’t anything for me to be competitive with.

But when I would see able-bodied kids playing soccer, it made me jealous that I couldn’t play. Finding this was really cool.”

During the summer of 2002, some special guests came to speak at Smith and Britto’s camp. The guests, who were representatives from Atlanta’s Shepherd Center rehabilitation hospital, told the camp’s students about power soccer and mentioned that the Shepherd Center’s soccer team (the Shepherd Strikers) were in search of people to join and play. To gear up interest, an exhibition was held in which campers were invited to learn the game. Smith, despite some hesitation, hit the court.

Today Smith plays for the Atlanta Synergy power soccer team, competing in tournaments across the country and proving wrong those who thought a girl in a wheelchair couldn’t play soccer. She says she feels privileged

“One of my childhood friends kind of forced me to try it,” Smith said. “I didn’t really want to. I had never seen a sport specifically for people with disabilities, so I was like, ah, that’s probably not that cool. But I tried it, and I

ABILITY

loved it. I went out for the team right after that and I’ve been playing ever since.”

According to the United States Power Soccer Association, power soccer combines the skill of the wheelchair user with the speed and power of the chair itself to generate a game similar to soccer. The sport is played in a gym on a regulation basketball court and features two teams of four players each. Players must attack, defend and spin-kick a 13-inch soccer ball to score goals. The players’ wheelchairs are equipped with guards in front of the players’ feet, which are used to direct the ball during play—and to protect players when the intensity of the game increases.

“I think as soon as someone puts that guard on the front of their chair, it changes everything,” Smith said.

“As soon as you realize that you’re doing something completely independently, it changes your perception, and you start to understand that this isn’t just a sport that you just play around with. For me, the change was almost instantaneous.”

Power soccer (which is referred to internationally as “power football”) began in France in the 1970s and moved into the United States during the 1980s. As more countries began to play the sport, rules and strategies began to vary. In 2005, six national organizations met in Paris and agreed to form the Federation International de Powerchair Football Association (FIPFA) as the international governing body of the sport.

By then, Smith’s skill had increased and her team had separated from the Shepherd Center to compete—and to raise money—independently. They became the Atlanta Synergy, and have since traveled to Arizona, Indiana, and across the South to compete in tournaments. The wide spread of the sport’s tournament sites is a clear indicator of its increasing popularity across the country.

“We have received inquiries from several states interested in starting a program,” said Dominic Russo, president of the U.S. Power Soccer Association, in a letter on the organization’s website. “We are reaching not only our target goal of growing within the U.S. but also throughout our continent.”

In a recent survey by FIPFA of ten national organizations across the globe, it was revealed that more than 3,500 people play power soccer, with 600 of those athletes participating in the United States. France leads all countries in adoption of the sport with 1,100 players.

In 2007, Smith and her teammate Eddie McGuire were selected to compete for Team USA in the first World Cup for power soccer in Japan. Jerome Durand, also a Synergy player, represented France. Smith notes that, even in her role as a team alternate, the experience was unforgettable.

“We had like five or six training camps for the year and a half leading up to the World Cup,” Smith said. “We got to go to Minnesota, Las Vegas, San Francisco and all these places to train. Going to Japan was amazing.

The level of competition there was unreal.”

In a tense shootout, Team USA beat Japan for the Cup. With her Atlanta teammates, Smith also took a trip to the sport’s homeland of France to pick up some new competition wheelchairs. While there, she played a few exhibition games against some of the local teams.

“Our style mimics how they play,” said Smith, who was recently moved into a striker position for her team in order to be more aggressive on the court. “Everybody plays how the French play, with the passing and how fast the game is. We learned a lot from them.”

It seems teams in North America have also learned a lot from Atlanta. The Synergy has transformed into one of the premier power soccer teams this side of the ocean, proving its worth when it played in the inaugural Americas Champions Cup in October in Suwanee, GA. Smith and her teammates claimed the title with a 4-0 victory over the Circle City Rollers, the team to whom they lost in July in the United States Power Soccer Association National Championship Tournament finals.

The America’s Champions Cup was organized by FIPFA and teams from the U.S. Power Soccer Association and Powerchair Football Canada. It offered eight teams a chance to gain international playing experience, providing them with solid preparation for the 2011 Powerchair Football World Cup, which is still up for bid between potential host nations United States and France.

Whether the World Cup is to be in the U.S. or in the sport’s homeland, Smith hopes to be in attendance as a representative for her country. And if she’s not, she knows that others can carry the torch for her. Whether a girl happens to be carrying that torch or not makes no difference to Smith.

“I see younger kids who have never been a part of something like this and haven’t actively participated in things,” Smith said. “I love to show kids that this is something you can do without anybody’s help. Nobody can hold you back. Nobody can tell you that you can’t do it.”

by Josh Pate FIPFA fipfa.org United States Power Soccer Association powersoccerusa.net Atlanta Synergy atlantasynergy.com ABILITY 17

Photos by: Nancy Villere - CrushPhotoStudios.com

W

hile driving home from a long day at the office, ABILITY Magazine’s Chet Cooper happened upon a National Public Radio (NPR) interview with a woman named Alia Malek, author of A Country Called Amreeka. In her interview, Malek described her book as featuring a cross-section of ArabAmericans in an effort to challenge stereotype, foster cross-cultural understanding and respect, and to provide insight into what it means to be an Arab-American today.

The NPR interview ended with a mention that Malek would be visiting Southern California the following week, prompting Cooper to wonder if Malek’s interest in civil rights would translate into a compelling interview for ABILITY Magazine.

It did. Malek and Cooper chatted over malts at the scenic Shake Shack along the Pacific Coast Highway near Newport Beach, discussing the past, present and future of civil right movements in America.

Chet Cooper: Obviously your work has a lot to do with stereotypes and with cultural awareness. Do you see a connection with the American with Disabilities Act (ADA) and any of the work you’ve done?

Alia Malek: I do. The ADA is enforced by the civil rights division of the Department of Justice, which is

18

ABILITY

where I worked as an attorney. The ADA is a civil rights movement, so I do feel a connection.

I think it’s really all about paradigm shifting, really.

What you guys are doing with your magazine is what I tried to do with my book. I don’t want to hear about Arab-Americans every time, only in reaction to when situations happen. I’m really more interested in writing about American society as a whole. If American history is truly a mosaic, then there are still many tiles that are missing. We don’t fully understand the experiences or the history of other people who are as American as we are. And that’s why we don’t have a fully clear picture of who we are as a country. That’s why you have people saying stuff like, “What happened to our country? How could this happen in our country? Where is the America I know?” Some are still trying to understand how we can have a black President. It’s only because many people have no idea who Americans really are.

Cooper: How did you tackle this sort of thing in your book?

Malek: My book actually starts with the events in Birmingham, Alabama, in ’63. The bombing of the 16th Street Baptist Church is what triggered the passage of the civil rights law, the Voting Rights Act of 1965. So

the book opens with a prologue that tries to make tangible how different 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 government 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?

Malek: I’ve lived and worked there three times, and I went one other time just for fun.

Cooper: For fun?

Malek: (laughs) Well, no, I guess not just for fun. I took a bunch of Student Nonviolent Coordinating Committee members with me. They’re like Freedom Riders.

Cooper: In your travels between Palestine and the United States, do you see any differences between the societal and governmental treatment of people with disabilities?

Malek: Yeah, I mean, the acceptance of mental health issues and of people who have disabilities is never really the first thing that a society does in its evolution. In these marginalized and disempowered societies there are so many people suffering, particularly from mental health problems and disabilities. A lot of people have been shot or injured somehow. So yes, you see that in Palestine and you see that in Lebanon. Attitudes about disability and mental health issues need to evolve in any society, just as they need to evolve in Arab-American communities.

Sometimes if a community isn’t politically mobilized to get a president elected or to get a foreign policy changed, it’s going to put a lot of these issues on the back burner, particularly in respect to mental health and disability rights. But I just met a woman yesterday who is getting her degree in marriage therapy with an interest in treating mental health in the Arab-American community.

Cooper: And her thought is that, because of acculturation, there’s a difference between— Malek: Well, there’s still a stigma associated with having mental health issues and getting treatment, particularly. That attitude prevents a lot of people from getting the help that they need.

Cooper: What are your thoughts about the shooting in Fort Hood, with respect to mental illness?

Malek: I think it’s clearly a mental health issue, no matter what anyone else has wrapped it up in. If this guy has wrapped it up in religious extremism or whatever, fundamentally, it remains a mental health issue. It’s not a cultural or religious determination. But that’s not how they’re talking about it on the news. It’s pathetic.

You’re human just like anyone else, and you can have mental health problems just like anyone else can. But that message isn’t exactly getting out there.

Malek: One of my friends is a correspondent for the Military Times and is an expert on a lot of health issues.

I went on her Facebook page after the Fort Hood situation, because she’s friends with a ton of soldiers, and I was going to see what people had written and if there was a lot of racism being thrown around. Instead, there were just a lot of people saying, “We come back from the service and we don’t get any kind of real mental health help.” I think people who are familiar with that kind of situation recognized this whole Fort Hood incident was a mental health issue.

I can think of, within the last two years, two other service people who have gone on shooting rampages.

Something had cracked within them. And we didn’t sit there and wonder if this had anything to do with Christianity or with being white. So, at the core of this, we’re really diluting a conversation that does need to happen.

Why are our service people not getting what they need?

Cooper: I know a public relations person out of Camp Pendleton who is actually working on a program to further the awareness of the need for peer-to-peer counseling, focusing on what’s happening with suicides among these soldiers. The numbers are really staggering.

Malek: They are staggering. And publicly we don’t know enough about that.

Cooper: We looked recently at whether there is a relationship between motorcycle accidents and post-traumatic stress disorder. A lot of people who serve in the military come back, buy a bike, and crash before they even get home. These military servicemen and servicewomen are coming out of conflict, looking to recapture some adrenaline, they get up to this high speed on their bikes, and then they crash and die. They’re not trying to commit suicide, but they’re also not really aware of what they’re doing.

Malek: Wow. You know, the last story in my book is about a soldier. We go out to war alongside a YemeniAmerican Marine, and we live it very viscerally with him. But the whole point of the book, and of these conversations, is that we’ve got to normalize and make familiar these largely unfamiliar people and experiences. It’s about making visible the stories, the lives, and the history of a people that are invisible.

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, especially when they go undetected. They are no less tragic 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 disability had nothing to do with finding new ways to make businesses work more efficiently. It had nothing to do with adapting workplace strategies—instead, it merely embraced a disparaging view of disability.

The book continually referred to errors and wrong-doings and detriments in an organization: the “learning disabilities” of a business.

And though much of the book’s content may have been useful, innovative and thought-provoking, 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 organizational “learning disabilities.” Instead, I included the following footnote in my report:

I

recently participated in a workshop about organizational development. Everything about the learning environment seemed perfect: the class was small, the agenda looked interesting, and the presenter was engaging. I was ready to learn.

We were asked to purchase two books for the course.

One was titled, The Fifth Discipline: The Art and Practice of the Learning Organization, by Peter M. Senge.

At a glance, it seemed informative.

But remember what your grandpa always taught you: Don’t judge a book by its cover.

This particular book’s second chapter was titled: “Does Your Organization Have A Learning Disability?” The words made me cringe. Still, I was a little intrigued. How would this chapter play out? How was the author going to link learning disabilities to the state of an organization? I decided to read on.

22

ABILITY

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 specifically notes, for example, that: “Learning disabilities are tragic in children. They are no less tragic in organizations. The first step in curing them is to begin to identify the seven learning disabilities.” These “seven learning disabilities” are obviously labeled as such because they are seen as significant infringements on the productivity of an organization. However, linking a lack of productivity or a professional error to the term “disability” in a demoralizing fashion such as this is something that I cannot support, based on my personal moral code and professional obligation. Therefore, Senge’s seven “learning disabilities” will be referred to in this review as “methods of error.” For reference to, and justification for, this standing, please refer to Respectful Disability Language, www.nyln.org/Clearinghouse/Documents/Language%20Doc.pdf.

Though I had simply included this footnote in my paper for my own moral well-being, I found that something amazing happened as a result of my decision. After exchanging essays with a classmate for proofreading, I found the following footnote in my classmate’s work: After a conversation with our colleague Betsy Valnes, and after examination of her organization’s esteemed work, I feel

strongly that Peter M. Senge’s use of the term “learning disability” to describe organizational weakness is inappropriate 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 which I would like to credit Betsy Valnes.

I had not expected this. I had not expected others to get on board with the choice I had made. I had merely included the notation in my paper to ease my own conscience—and yet, somehow, one little footnote had promoted a stand to be taken by a fellow professional, someone who had embraced the importance of universal respect, even though she doesn’t work directly in or with the disability movement. My classmate had written those words simply because she knew them to be right.

She had stood beside me and, as an ally, she had embraced a piece of disability culture and had provided evidence that the roles of allies in our movement are essential.

I decided to write the author and publisher of The Fifth Discipline, sharing my frustrations and noting what a pity it was that such a useful book had made such an offensive comparison. I noted that such decisions can alienate an entire class of readership. I also included a copy of the Disability Respectability Language document and asked for consideration to be demonstrated in future publications of Senge’s book. Will it happen?

Who knows. Will the writer or publisher have one of

those wonderful “Ah-ha” moments, recognizing the error of his decision to publish something repulsive?

I hope so. Because these instances of prejudice are unfortunately not uncommon. Numerous skilled professionals and public experts know little to nothing about disability culture and disability pride. They remain foolish, uninformed and unchallenged, using disparaging language about disability without a second thought.

We as a community still have a lot of work to do. We must strengthen the unity of our disability family, embracing our allies who may not themselves have disabilities, but who still stand beside us in what we aim to achieve. We must maintain a sharp awareness of how we are perceived around the world and always remember that bringing us all together is what creates “the real reality.” Today’s reality only confirms that our work is far from over.

by Betsy Valnes Betsy Valnes is an active member of the disability movement in the US and abroad. She serves as executive director of the National Youth Leadership Network, a non-profit organization run by and for young people with disabilities. An adaptation of this article was published in the fall newsletter of the National Youth Leadership Network. nyln.org

ABILITY 23

24

ABILITY

Photos by: Nancy Villere - CrushPhotoStudios.com

L

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 episodes 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 disabilities—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 master 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 TriUnion 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.”

Actors Michael D’Amore (left) and Robert David Hall chat between workshops

So it was with something of a personal curiosity and excitement that I attended the 2009 Hollywood Disabilities Forum, held in October at the UCLA School of Theater, Film and Television. As a graduate of the UCLA screenwriting program, and as a writer with a physical disability, I am aware that events like this one will prove vital not only in respect to my own career, but also in helping to shape the self-image and social 26

ABILITY

But arriving at solutions is difficult when the nature of a problem is still not fully understood or acknowledged. 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 spoken by a person with a disability. According to the forum’s keynote speaker Peter Farrelly, this imbalance between representation and reality is self-sustaining, as the lack of people with disabilities in our omnipresent media culture keeps that demographic “pretty much invisible” to storytellers, casting directors, and other industry professionals.

“Unless a role is designated as being somebody with a disability, the truth is, casting is just not seeing you,” Farrelly said. “No screenplay says ‘Amanda, the girlfriend, walks in the room and has perfect hearing,’

but that’s who they’re thinking of when they’re putting the movie together because that’s what they’ve seen before.”

Farrelly—who, with his brother Bobby, created hit comedies There’s Something About Mary, Shallow Hal and Stuck on You—has included people with disabilities in the majority of his films, in hopes of changing what has become normalized in global media. “It’s going to be a gradual change,” Farrelly said, likening the social bias against people with disabilities to that against women in traditionally male professions. “My mother was a great nurse who should’ve been a doctor. Today she’d be a doctor. Progress happens.”

But some members of the panel expressed concern that the very progress they’re hungry for is too often impeded by the casting of able-bodied actors to play characters with disabilities. Television writer-producer Janis Hirsch, who works closely with Mitchell on Brothers, argued that roles for characters with disabilities should be played by actors with disabilities because there is no shortage of available talent in the audition pool. Hirsch cited a recent episode of Curb Your Enthusiasm as representative of what is often a hurdle for the advancement of actors with disabilities.

“The episode had two characters in wheelchairs, played by women without disabilities,” Hirsch said. “I’m sure they’re lovely women, but they’re dead to me. It’s not like there weren’t other talented options out there.”

brothel, countered Hirsch’s stance by questioning its exclusivity. “I’m not interested in blackballing actors,” Milch said. “It’s a dangerous position to take. I’m not going to hire to meet a quota. Let’s focus on making more opportunities, not fewer, here.”

The collision of these two perspectives sparked thoughtful debate at the forum, drawing feedback from audience members and panelists alike. One actress in attendance expressed that film and television “didn’t need any more Daniel Day-Lewises,” referencing the actor’s Oscar-winning turn as Christy Brown in My Left Foot. Actor RJ Mitte, who holds a supporting role on the popular series Breaking Bad, found a measured middle ground, offering that “the perfect role is out there for everybody, it’s just important to be ready when it comes.”

Though debates like these provide no easy answers, simply attending this event proved to be an eye-opener for me. I left the forum infused with hope and a new sense of perspective, recognizing that perhaps elevating representation of characters with disabilities truly is a social cause akin to those of so many other minority groups of previous years. As a writer, media junkie, and hopeful participant in the future of the film and television, I was gratified to witness so many people of intellect and passion discussing something I had grown up only subconsciously recognizing: if we don’t work to get ourselves reflected in the media, who will?

by David Radcliff

Milch, whose HBO series Deadwood featured a woman with cerebral palsy in a 19th-century South Dakota

iampwd.org ABILITY 27

M

ultiple sclerosis (MS) is one of more than 80 diseases known as autoimmune disorders.

Other notable autoimmune disorders include Systemic Lupus Erythematosis (“lupus” or “SLE”) and Rheumatoid Arthritis (RA). These diseases operate by “confusing” a person’s immune system and attacking healthy cells within the body.

Treatment of autoimmune disorders is tricky, particularly since the human immune system is among the least understood of all systems in the body. Aiding a patient with an autoimmune disorder requires suppressing his immune system to diminish attacks against his body’s cells. Too much suppression of the immune system, however, can allow other diseases to flourish. A wide variety of medications, new and old, are used to treat autoimmune diseases, and are often administered in combination with one another. All of these medications suppress some aspect of a patient’s immunity.

The ideal medication option for treatment of autoimmune disorder would suppress only that part of the patient’s immune system that is attacking the particular cell type in question. Unfortunately, no such treatment is presently available to the population at large. New drugs tend to be either experimental or expensive, making these sorts of treatment options difficult to access.

28

Fortunately, new medications are available for treatment of MS. Some feature exciting characteristics, like capacity for oral administration and a profound impact on the symptoms of the disease. Copaxone®, or glatiramer acetate, is one such medication. It has even been speculated that these drugs may prove beneficial in treatment of other conditions that affect myelin-producing cells, such as spinal cord injury. Much of the destruction of myelin-producing cells after a spinal cord injury is due to inflammation (an immune system response) commonly associated with traumatic injury.

It is not too surprising, then, that scientists have hypothesized that drugs like Copaxone could be useful for spinal cord injury patients—a theory they have tested by introducing the drug to mice. With a team of colleagues, V. Wee Yong, MD, Professor in the Departments of Clinical Neurosciences and Oncology at The University of Calgary, published results of just such experimentation in The Proceedings of the National Academy of Sciences. In their study, Yong and his team of researchers found that the myelin cells that are attacked in cases of MS grew better in injured mice that were treated with Copaxone than they did in a control group of injured mice that did not receive such treatment.

In cases of MS, the immune system attacks cells that produce myelin, a fatty substance that wraps around nerves in the brain and spinal cord. Myelin functions similarly to insulation on an electrical wire—when it is destroyed, nerves are seriously affected. (Don’t try to investigate this comparison by stripping the insulation on the wires in your house!)

Young’s research illustrates that Capaxone demonstrates an ability to temper damage to myelin cells caused by inflammation, a medical discovery which could prove beneficial to a wide spread of patients confronted with spinal cord injury and MS. Such discoveries are the tiny “steps for man” (or mouse) that slowly lead to “giant leaps for mankind.” Though most of these tiny steps are rarely reported on by news media, they occur in scientific 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 severity of attacks is variable from instance to instance and from patient to patient, as different areas of the brain and spinal cord are affected during each attack.

Medical students learning about MS are taught to look for lesions separated in time and space, the latter being defined as space within the central nervous system (CNS, i.e., the brain and spinal cord) and the former referring to the time between manifestation of lesions.

Lesions produced by MS occur in different locations during each episode, resulting in a variety of symptoms.

Though such developments in science may seem promising, it remains very important to keep these advancements in perspective. Medications such as Capaxone have not placed us on the verge of miracles.

For example, it remains unrealistic to assume that Capaxone and similar treatments will allow persons with spinal cord injuries to walk. Nevertheless, this scientific development does indicate some small measure of progress. And we all have to crawl before we can run.

ABILITY

CURRENT TREATMENT OF MULTIPLE SCLEROSIS

F

ew drugs have been developed and approved to combat the effects of a malfunctioning immune system on normal or transplanted organs. Use of medications for treatment of autoimmune disorders is a delicate balancing act, since such medications function by suppressing the immune system and make the patient’s body vulnerable to infections.

An old standby for the treatment of MS is the introduction of potent anti-inflammatory steroids into a patient’s system, although this method has a lengthy list of dangerous and unpleasant side effects if the steroids are used for a prolonged period.

Newer medications fall under the categories of immune system suppressors or immune system modulators.

Recent experience suggests that combinations of these drugs on various dose and time schedules may provide better results than previous available options. Typically an MS attack is best treated first with an immunopressant agent—such as steroids or another, more recently developed, anti-inflammatory medication.

Once the acute inflammatory phase of the MS attack has subsided, drugs that modify or modulate specific activities of the immune system can come into play. These

combinations of drugs for MS are referred to as Disease Modifying Treatments (DMTs). DMT’s are intended to halt the long-term progression of the disease.

A popular combination of drugs that make up one DMT is referred to as “ABC.” In this acronym, the “A” stands for Avonex (Interferon Beta-1a), which is given by injection into a muscle once a week, typically for several weeks. The “B” stands for Betaseron (Inteferon Beta1b). It is given by injection under the skin every other day in escalating doses over a span of six weeks. Finally, the “C” denotes a newer drug called Copaxone, which is glatiramer acetate. It is injected under the skin every day for a duration determined by a doctor on a case-by-case basis.

In addition to DMTs, other medications exist to address specific symptoms of the disease. For example, painful tightness in muscles (resulting from nerve damage associated with MS) can be alleviated by utilization of a type of Botox, though this Botox is not the same as that which is used to smooth wrinkles. Botox treatment for MS can be given in a single maximum dose that is rationed among the affected muscles every few months.

by Thomas Chappell, MD

ABILITY 29

L

et’s begin with a little TV history: back in the 1970s and early ’80s, there weren’t dozens of cable networks doing original programming, or YouTube, or Facebook, or iPods, or a thousand other means of mass distraction. There were three TV networks, a nascent PBS, and radio. Back then, primetime network television was watched by everyone, and everybody knew their favorite theme songs and characters.

In 1978 and ’79, the number one rated show in America was a slapstick working-class sitcom called Laverne & Shirley. Created by Gary Marshall, it ran on Tuesday nights at 8:30 and an average of 23 million viewers tuned in every week. (The Office, by comparison, currently pulls in eight million a week; 30 Rock, six million, including those who record their programming on TiVo). Laverne & Shirley featured four main characters: Milwaukee brewery workers and roommates Laverne and Shirley, and two addled-brained, greasy-haired hose heads from upstairs, Lenny Kosnowski and Andrew “Squiggy” Squigman.

Lots of people loved Laverne & Shirley because of comic sparkplugs Penny Marshall and Cindy Williams, who played the odd-couple, dreamy-headed leads. Some of us, however, were more intrigued by their knuckleheaded sidekicks. Just as many viewers of The Honey30

ABILITY

mooners sat quietly until Ralph Kramden’s sewer-worker friend, Norton (Art Carney), walked in and hollered, “Ralphie Boy!”, many fans of Laverne & Shirley loved to see Lennie and Squiggy stumble into a scene, dazed and confused, and always with Squiggy yelling, in a voice that sounded like Ethel Merman in labor, “Hello!”

Long before there were Wayne and Garth or Beavis and Butthead or Dumb and Dumber, there were Lenny and Squiggy. As David L. Lander, the actor who played Squiggy, described the characters, “Squiggy is the dumb guy who sees himself as a genius; Lenny is the dumb guy who thinks Squiggy is a genius.”

Laverne and Shirley ran for eight seasons and 178 episodes, finally ending in 1983. It went into worldwide syndication and is probably still playing in Zimbabwe. The show spawned Lenny and Squiggy dolls, lunchboxes, and even a record album titled “Lenny and The Squigtones.” When it was all over, Lenny (Michael McKean) went on to become David St. Hubbins in the immortal faux-rock group Spinal Tap, and played many memorable roles in films by Christopher Guest and others. Today he stars on Broadway in the Tracy Letts play, Superior Donuts.

Squiggy, played by David L. Lander, got multiple sclerosis (MS).

Photos by: Nancy Villere - CrushPhotoStudios.com

That’s where this story begins. For 15 years, from 1984, when he was first diagnosed with MS, until 1999, when he finally “came out” via a headline story in People magazine, David Lander kept his MS a secret. His wife and daughter knew of his condition, as did a couple of close friends, but that was about it. David didn’t even tell his father-in-law, a very famous Hollywood agent.

The only way to survive Hollywood in the dark ages of the ’80s and ’90s, David figured, was to hide his condition at all times. Although Squiggy had proven to be a great role, walking around with MS and acting like he didn’t have a care in the world presented Lander with an even bigger challenge. It proved to be a 15-year, Emmyworthy performance.

Throughout this period, David continued to work as an actor, playing a minor-league baseball announcer in the Tom Hanks movie A League of Their Own and earning guest spots on hit shows like Married…With Children, Twin Peaks, Happy Days, and Mad About You. He even reprised Squiggy in a classic episode of The Simpsons.

David performed in plays, supplied lots of voiceover work for cartoons and commercials, and did all the other things that working actors do. He just did it with MS. A disability is not a good thing to have in Hollywood.

Health, youth, boundless energy, newness, and the ability to walk straight are smiled upon. Though there are

some exceptions to the rule—Marlee Matlin, Robert David Hall, the coroner on CSI—the odds of having a disability and working steadily in Hollywood are not favorable, especially for actors. It is particularly hard to stroll onto a stage or in front of a camera and hide a physical disability, especially one that often gets worse in strange and unpredictable ways.

But David, seeing no other sane option, essentially lied his way through the process of finding work in Hollywood. He lied on every perfunctory physical checkup before every movie and TV show he did. “Me? No, I’m fit as a fiddle. No MS over here.” He lied to his friends if they spotted him stumbling over a curb or suddenly grabbing a hold of a railing. He lied when a casting director asked him, as David tipped a little to the right while entering a room, “Did you have an accident?”

Actress Teri Garr, also living with MS, had a pat answer for questions like these:“Yes, in fact, I had a skiing accident. Thank God nothing was broken.”

David once recalled the famous acting coach Stella Adler having said, “Every actor playing a character should know a secret that his character has. If the writer doesn’t provide it, you should invent a secret only your character knows.” David decided that each of his characters 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” generally 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, coordination problems, cognitive problems. What’s that?

Memory? Oh, that’s no good. Okay, do we want a clumsy guy who won’t remember his lines, who’ll maybe wake up blind tomorrow, not to mention possibly slurring his words? Or do we want another guy with brown hair? Okay, we’ll go with the brown-haired guy.”

David Lander played Andrew “Squiggy” Squigman in the TV show Laverne & Shirley

their secret,” he said, “and they’re not telling anybody.”

This approach aimed David for tricky territory. For a film David once did with the great comic actor Harvey Korman, the script called for a pivotal two-person scene to take place in a bar. “Perfect,” David thought, “I can sit the whole time.”

But the director called the night before filming and said, “David, the scene is boring. I want to make it more interesting, more filmic, so I’ve moved the whole thing to the jogging track at UCLA. You and Harvey will jog and talk.” David protested, but to no avail. He would have to jog for no doubt multiple takes, catching his breath long enough to reveal “the real murderer” to Harvey Korman.

The next morning, full of trepidation that on the 20th take his legs would collapse and his secret would be shamefully revealed, David showed up at UCLA to discover that Harvey’s wardrobe crinkled like aluminum foil after every three feet of jogging. The whole scene would have to be shot with frequent breaks from the jog-a-thon. David was saved by a wardrobe malfunction.

32

ABILITY

If David Lander is any indication, MS has no appreciable effect on someone’s wit. Asked if people like him and Teri Garr have a secret MS handshake, he answered, “Yes, but we can never complete it. The hand, the thumb…”

The coup de grâce for David came with an ill-fated role in a play in Chicago called The Nerd. One of the producers cast David, sight unseen, mistaking David for his Laverne & Shirley co-star Michael McKean. “She was so disappointed when I showed up,” David said. With no rehearsal time, and with a load of props to manipulate on stage, David found himself forced to hide his MS in a very physical performance. This experience, plus being dragged out to drink every night by the show’s producer, created problems for David. He was let go from the production with the excuse that his “drinking problem” disqualified him from performing.

David didn’t argue. Rather than fessing up to the MS, a disease he knew they wouldn’t understand anyway, he copped to a disease they did understand but which he didn’t have: alcoholism.

Show business forgives alcoholics all the time. Ask all those stars whose embarrassing mug shots permanently reside on YouTube. But it doesn’t forgive MS. After a decade and a half of hiding behind couches, trying to conceal his dragging leg, telling gullible directors that he was limping because he thought it was good if his character had had polio as a kid, and faking it in a hundred other ways, David finally decided to come out of the MS closet. The impetus was a call from his old

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 fashion. “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 desperate.” 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 different 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 interest 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

A

t just 17 years old, Jesse Billauer was left paralyzed after a surfing accident broke his neck and 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 equipment 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 riding 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 foundation, 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 documentary 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.

Cooper: And your foundation has a gala in Hollywood.

Is that your largest fundraiser of the year?

safer, because a lot of people hit the coral, and you’re probably going to be avoiding that issue with the buoyancy that your suit provides.

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 Hollywood?

Billauer: (laughs) For sure. I get pushed under the water, but I just pop back up.

Billauer: You get to be by the beach! We bring the beach to Hollywood.

Cooper: Have you ever thought you should be wearing 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: Yeah, they’re modified. I lie on my stomach and prop myself up on my elbows. There are also these foot straps that we use for tow-in surfing, and straps that are mounted by the rails so you can just wedge yourself in. If you have the ability to grip, you can hold onto them. But mostly we’re just lying on the board.

Billauer: I wear a helmet all the time, surfing. I almost got killed in Malibu by a longboarder. A guy’s board almost hit me in my head, and ever since then, I wear a helmet. I used to not wear a helmet or a life jacket, years ago.

Cooper: So we all get to mature a little bit as we get older.

Billauer: Yup.

Angeles: In your documentary, when you go to Fiji and you have the jetski towing you, it’s mentioned that you’re not able to surf as you normally do because the waves are so big in Fiji. Why did you need that?

Billauer: Out there, the waves comes in at a faster speed. If you get into the surf a lot earlier, they’re a lot faster, so if someone’s just pushing you, you might not have enough speed to really be where you need to be on waves. So we kind of came up with this adaptive jetski idea, in which I would be towed behind it. It was cool.

Cooper: I’ve seen some of that, but I was wondering how you are able to catch a wave and not purl, because body position is typically so important.

Billauer: If you feel like you’re going to purl, then you just scoot back on the board a little bit.

Cooper: Are you able to position your body when you’re on the board?

Billauer: Oh, yeah. I can turn. I turn by leaning my shoulders.

Cooper: Are you capable of getting off the board if you want to bail out?

Billauer: Yup. And I’ve got a life jacket that’s custombuilt, Velcro-ed® to my wetsuit. If I fall, I pop right up.

I can hold my breath. I can swim. But yeah, I’ve fallen inside the barrel of an eight-foot wave in Fiji, and I just popped right up.

Cooper: So in a sense, what you have is maybe even 36

ABILITY

Angeles: So Jesse’s Story won two awards at the Malibu Film Festival, right?

Billauer: Yeah, it won both Jury Selection and Audience Selection for the Best Documentary. We worked on that film for about six or seven years, and have been editing it for the last three, so it feels good to have it out there.

Angeles: We met with Scott Caan for our previous issue, who works with an organization called Surfer’s Healing.

And we asked him what the difference was between Surfer’s Healing and what your organization is doing, and he said that theirs is more for kids who are autistic and yours is more for people— Billauer: Yeah, theirs is more for people with autism and ours is more the spinal cord injury set. And the majority of our participants have never surfed.

Cooper: Can you briefly describe, for people who aren’t aware, what you actually do when you have a surfing event?

Billauer: Well, we have about 200 volunteers and maybe 40 different surfers with disabilities at a given event, and everyone is divided into four teams. So for each surfer, there are maybe 10 or 12 volunteers per person, and everyone gets an opportunity to surf. It’s very safe. If someone is a surfer who’s more wellversed with the ocean and who wants to venture farther out where there are bigger waves, it’s all about his or her comfort level. You can be close in and catch little waves, or you can go out and catch bigger waves. It’s really up to you. We choose locations that we know

aren’t going to be too dangerous.

Angeles: What would you say is the most fun thing that you’re up to these days?

Billauer: Fishing and surfing, mostly. Diving with sharks was beautiful. I’d love to do that again. But right now I’m pretty interested in international efforts.

By the way, does every celebrity on the cover of ABILITY Magazine have some sort of connection to a disability?

Cooper: If they don’t, then we take a bat to one of their limbs. [laughter] Actually, the celebrities either have a disability or a strong connection to a health condition or disability. The celebrities choose to speak with us, to help bring awareness, educate and change attitudes.

Billauer: That’s really cool.

Angeles: So, now that you’re merging with the Christopher Reeve Foundation organization, I guess that makes you The Man now, right?

Billauer: Yeah, right. (laughs) But there’s also The Buoniconti Fund and The Miami Project. Mark Buoniconti has a lot of celebrity friends in sports, and they raise millions and millions of dollars every year. I’m just little old Jesse, man. No pressure.

But I do a lot of motivational speaking now. That’s what 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 living from my motivational speaking career. I speak to companies, schools, various organizations. There’s information about that at jessebillauer.com.

Cooper: You feel like you’re making an impact in that way?

Billauer: Yeah, I do. I’ve had kids come up to me and tell me that they were thinking about committing suicide until they heard me speak, because their lives were that bad. But after talking to me and seeing me, they realized things weren’t that bad after all. A girl came up to me who was a high school senior and she saw my speech and said something clicked. She said, “I was just about to walk out of school and quit school today. I’m going to stay in school now. I’ll graduate, just because of hearing what you had to say.”

Cooper: You’re lucky you made the plane on time!

Billauer: (laughs) Right! So it’s all good, you know? If I reach one, I’ve done my job. When you’re talking to little kids, and they’re asking questions, they sometimes tell you a story about themselves. It’s really cute.

Cooper: Can you remember one?

Billauer: Usually a kid will just be like, “Hey, I broke my leg,” and instead of asking me a question about something, he’ll just say, “I broke my leg,” or “I broke my arm. It was a mess.” Some kids come up to me and say, “What happened to your legs? Did you break them?

Are they gonna heal?” There are so many different questions that I get. But it’s cool. Everyone has his own thoughts, and kids don’t hold back. They’re not worried.

That’s the way to be.

For more information on surfing with Jesse Billauer, visit: liferollson.org/TWSA

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 anything 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 disabilities. 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 supposed 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 swirls around him, chunks of soil pelting his face, dry air burning in his nostrils. The sun is scalding, and so is the engine on his four-wheeler. And Seirlis is in love.

T

Witnessing the success of the first ride inspired Seirlis to transition from recipient to participant. “I wanted to get back into a hobby and sporting activity and join my friends on their bikes,” Seirlis said. “It was important to give it my best shot to try and adapt a four-wheeler.”

September marks an annual trek for Seirlis: the Quads 4 Quads off-road ride in South Africa. This four-day excurion sets quadriplegic and paraplegic four-wheeler fanatics on a 1,000-kilometer trip from Carnival City to Ballito, through a variety of terrain and sweltering conditions. Sure, it’s a physical test. But for folks like Seirlis, it’s also a pure adrenaline rush.

For Seirlis, four-wheeling proved to be the very definition of an adaptive sport. Though he has weakness in his hands, Seirlis developed ways to exert pressure on the steering handlebars and to adapt the brake and accelerator. After some adaptive engineering, nothing could keep Seirlis from the trail.

“The heat is a big challenge for me, Seirlis said. “The dust also creates some safety issues, and sitting on the bike for a long time puts a lot of strain on me. I don’t have a very secure grip on the handlebars, so some of the technical sections are really challenging.”

But none of that stops Seirlis from this test of endurance, as he treks alongside friends new and old.

“One of the most amazing things about this trip is the camaraderie and the support that I get,” Seirlis said.

Quads 4 Quads is the 2002 brainchild of Corinne Andrews and Glenn Foley, both of Family Adventures, a recreational adventure company based in South Africa. Andrews and Foley had been in business together as hosts of off-road rides since 1999, before deciding to aim their venture at changing people’s lives through volunteerism and donation.

“We decided that we were going to do something that nobody had tried before: a trip all the way from Johannesburg to Durban on off-road bikes,” Foley said.

“There was much debate about this because I was convinced that it was virtually impossible. Then Corinne threw a real curveball and told me that we were going to ride for a cause and give our money away.”

The cause selected to benefit from Foley and Andrews’ endeavor would be Seirlis and his QuadPara Association of South Africa. Andrews and Foley took eight months to plan their trip, and drew 200 riders to the event. Seirlis himself did not participate in the first tour, instead meeting the Quads 4 Quads group at its destination for ceremonial purposes.

“It was a roaring success,” Foley said. “When we got to Carnival City in Brakpan and handed Ari a check for around $200,000, the reality set in, and one of the most positive initiatives in the motorcycle industry was born.”

The $200,000 Seirlis was given stemmed from a variety of sponsors who had signed up for the trip, as well as from donations and entry fees from the trek’s participants. The Quads 4 Quads group also made multiple stops along its route to distribute goods to needy communities.

Since its inception, Quads 4 Quads has grown to as many as 700 participants and has conducted round-trips from Johannesburg to Durban. This year’s event boasted 400 participants, though the tour was scaled back to a one-way trip to cut expenses. Along its impressive routes, Quads 4 Quads has continued to hand out a variety of items to needy communities—everything from soccer balls and stationery to wheelchairs and pressure care mattresses.

“It’s important to give back,” Foley said. “South Africa has some very poor communities and they need to see some value, so we target schools, clinics and community centers.” Foley estimates the group has distributed more than 100 wheelchairs to communities along its route. “I think that the fact that you can still ride your dirtbike for 950 kilometers from a point to another point without using any paved roads has caught people’s imaginations. Add to this the charity aspect and you have an event that really appeals.”

A portion of each rider’s entry fee goes to the QuadPara Association of South Africa (QASA), and several corporate sponsors have provided donations of cash and goods to help offset the expenses of each year’s trip. Profits go toward QASA’s mission of providing a high quality of life for people with disabilities, with Seirlis himself serving as a high-spirited, four-wheeling example.

“All of the entrants in the last few years now have a good idea of what QASA does as an organization, and they’ve all been very generous to us,” Seirlis said. “The fact that I’ve managed to complete this event three times has inspired many other quadriplegics and paraplegics to participate.”

by Josh Pate

Quads 4 Quads on Facebook facebook.com/event.php?eid=77790467027 QASA qasa.co.za Family Adventures familyadventures.co.za/quads4quads.asp

ABILITY 39

T

he Equal Employment Opportunity Commission (EEOC) enforces federal laws prohibiting discrimination in employment. The following are recent cases brought about from the EEOC.

CLAYTON GROCERY SUED FOR LEARNING DISABILITY DISCRIMINATION Clayton Ranch Market, a grocery store in Clayton, NM, violated the Americans with Disabilities Act (ADA) by refusing to hire a qualified applicant because he had a disability, the US Equal Employment Opportunity Commission (EEOC) charged in a lawsuit. The In its suit, the EEOC stated that since at least April 2008, Clayton Ranch Market violated the ADA by failing to hire Robert Harris because of his learning disability. The EEOC filed suit in US District Court for the District of New Mexico (EEOC v. Moore and Moore, Inc. and Clayton Ranch Market Inc.) after first attempting to reach a voluntary settlement.

“The EEOC’s investigation revealed that Clayton Ranch Market hired people with the same or similar qualifications as Mr. Harris, yet Mr. Harris, who sought employment with the store, was neither hired or contacted about a job,” said EEOC Phoenix Acting District Director Rayford Irvin. “Employers cannot deny employment to qualified applicants because of disability.”

Regional Attorney Mary Jo O’Neill of the EEOC’s Phoenix District Office, added, “Employment decisions made solely on a person’s disability are illegal,” added Mary Jo O’Neill, regional attorney of the EEOC’s Phoenix District Office. “Employment opportunities should be made available to anyone who wants to work and who is capable of doing the job, regardless of disabilities.”

The lawsuit asks that the court order Clayton Ranch Market to provide Harris with appropriate relief (including back wages, compensatory and punitive damages), and to grant a permanent injunction enjoining the 40

ABILITY

company from engaging in disability discrimination.

The EEOC also asks the court to order that the company institute and carry out policies and practices that eradicate and prevent disability discrimination in the workplace.

D.R. HORTON SUED FOR DISABILITY DISCRIMINATION IN FIRING EMPLOYEE WITH SEVERE PREGNANCY COMPLICATIONS A Fortune 500 home builder and land developer which identifies itself as the nation’s largest home builder refused to accommodate an employee’s pregnancy-related disability and unlawfully fired her, the EEOC charged in a lawsuit.

The EEOC’s suit charged that D.R. Horton refused to accommodate a project manager for Horton in Kirkland, WA, when it denied her additional unpaid leave time after her doctor had placed her on bedrest for over seven months as a result of pregnancy-related complications.

Although the company initially provided some leave time to the employee, it stated that any additional leave time was against company policy, even if that period of time was unpaid. The employee was later fired as a result of this circumstance.

The ADA requires that employers engage in an interactive process with employees in good faith, exploring possible accommodations for an employee’s disability.

The EEOC filed suit in US District Court for the Western District of Washington after first attempting to reach a voluntary settlement. On behalf of the employee, the EEOC seeks monetary damages, focusing its case on anti-discrimination laws, changes in policies on accommodating employees with disabilities, posting of notices at the work site, and other injunctive relief.

“It is shocking that a company of this size would have a policy that is so rigid,” said EEOC San Francisco Regional Attorney William R. Tamayo. “It fails to consider its obligation under the law to discuss potential accommodations for an employee’s disability.”

“Companies that fail to engage in discussion with their employees about reasonable ways to accommodate their disabilities will lose valuable members of their work force and invite litigation,” added San Francisco District Director Michael Baldonado. “A company that bills itself as ‘America’s Builder’ can surely do better to ensure equal opportunity for all its workers, including those with disabilities.”

“St. John should have done more for Ms. Reherman than tell her to locate a vacant position within the hospital system,” said Melvin Kennedy, EEOC Senior Trial Attorney. “It is encouraging that this lawsuit settled so quickly and that St. John agreed to reporting provisions in the consent decree that will allow the EEOC to monitor its future responses to reasonable accommodation requests.”

According to the company website, www.drhorton.com, D.R. Horton is the largest home builder in the United States and a Fortune 500 company with operations in 28 states and headquarters in Fort Worth, Texas.

MEDICAL TRANSCRIPTION COMPANY DENIED JOB BASED ON STEREOTYPES OF PEOPLE WITH MULTIPLE SCLEROSIS

ST. JOHN HEALTH SYSTEM SETTLES EEOC DISABILITY DISCRIMINATION LAWSUIT St. John Health System, Inc., of Tulsa, OK, will pay $100,000 and furnish other relief to settle a disability discrimination lawsuit filed by the EEOC. The EEOC had charged that the company violated the ADA by failing to reasonably accommodate a hearing-impaired operating room scrub technician.

According to the EEOC’s suit, LaQuita Reherman had been employed by St. John for approximately six years before she was removed from her scrub technician position in March 2006 after several physicians complained about her being hard of hearing. The EEOC noted that, although Reherman wears hearing aids in both ears, she would have been able to hear doctors’ instructions if not for their practice of playing loud music in the operating room.

Reherman made it known to St. John that she needed assistance in finding another position, but the hospital made no effort to assist her. Instead, Reherman’s superiors simply put her, temporarily, into another position and told her to find a new job within the hospital system, the EEOC said. St. John terminated Reherman in June 2006 after she proved unable to find a vacant position.

Disability discrimination violates the ADA, a law which requires employers to make reasonable accommodations for employees’ disabilities as long as such accommodation do not pose an undue hardship on the business. The EEOC filed suit after first attempting to reach a pre-litigation settlement.

Under the terms of the consent decree, filed today for approval in the US District Court for the Northern District of Oklahoma (EEOC and Reherman v. St. John Health System, Inc.), St. John agreed to pay LaQuita Reherman $100,000 in damages. The company also agreed to provide disability discrimination training to all management and supervisory employees and to report all requests for reasonable accommodation to the EEOC for the next three years.

A medical transcription company in Rockville, MD, violated federal law when it refused to hire a medical transcriptionist to a full-time job because of her multiple sclerosis, the EEOC charged in a lawsuit it announced today.

In its suit, the EEOC said that since at least May 2006 and continuing into the present, Oracle Transcription, Inc. denied Mary Bobik a position as a full-time medical transcription editor. Oracle’s supervisor told Bobik that they didn’t want to “stress her out” with the responsibilities of a full-time position, even though she had worked at Oracle Transcription for several years and was regularly assigned to work more than 60 hours a week as a part-time editor. Bobik, who has nearly 20 years of experience as a medical transcriptionist and editor, was physically capable and willing to perform the duties, the EEOC said. Instead, Oracle Transcription ignored Bobik’s requests for a full-time job and hired other persons with less experience.

The Americans With Disabilities Act (ADA) makes it unlawful to discriminate against a qualified individual because of a disability. The EEOC filed suit in US District Court for the District of Maryland, Southern District, after first attempting to reach a voluntary settlement. The complaint seeks monetary and injunctive relief, including back wages, compensatory and punitive damages and changes in employment policies to provide equal employment opportunities for qualified individuals with disabilities.

“Many people, including Mary Bobik, have demonstrated their ability to perform their jobs just fine regardless of MS,” said EEOC Acting Regional Attorney Debra M. Lawrence. “She worked many long hours for Oracle and was able and willing to continue to do so.”

According to its Web site, Oracle Transcription provides medical transcription services to hospitals and medical facilities in Washington DC and throughout the country.

In fiscal year 2008, disability-based charges rose to a record 19,543, up 10.2 percent from the prior year and the highest level since 1995. eeoc.gov ABILITY 41

Notice how commas, periods, capitalization, and quotations are used in the right places in this dialogue, allowing 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 talking to?”

P

eople always advise me that I can do anything I want, in spite of my disability. But my disability, stage-four Friedreich’s Ataxia, is a very complicated one. So I guess I cannot realistically be an astronaut.

But I can be an astronaut on paper.

It is human nature to have dreams. Within our dreams, plot, setting, and characters (the essentials of any tale!) emerge. As long as we have our dreams, we don’t even have to have a vivid imagination. Write our dreams on paper (using proper grammatical skills, of course!) and bingo, we’re well on our way to a notable story.

But what is a story? Stories can be defined in a number of ways. They can be factual or fictional—although most often, a story is regarded as a false account rather than as a truthful report. The key rule for writing a good story, however, is simplicity.

While reading your story, a reader must be invited to believe in it (“Yes, this could happen,” he or she might say, nodding.) Although there are many ways for writers to simulate reality in a story, utilization of dreams allows them to do so in the most effortless way, essentially writing the story as if they were living it.

If you are attempting to generate ideas for a plot of a story, consider drawing from events that you want to happen in your own life. For example, if you want to be a figure skater, write about practices, competitions, or personal rivalries with other skaters.

The setting should also match your plot—you can’t have an ice skating exhibition in Afghanistan where there are no ice rinks! Besides, I’m sure only few people would dream about going to Afghanistan. There are plenty of fascinating places in the world that do have ice rinks!

It is also helpful to put your persona, goals, and desire into each character of your story. Spread your traits into all of your characters. If you are confident and ambitious, you might give these traits to your protagonist, pitting her against an antagonist who will do anything to stop her.

Make sure to use prim and clear grammatical techniques. Not only do these elements make your story appealing, they help you develop an attractive voice, tone, and style in your work.

Dialogue in your story should demonstrate strong voice and should raise suspense: “Come on,” Prachi said, exasperated. “Get off the phone!”

As a writer, you should also be asking yourself these questions—they automatically give you more material to write! If you are able to answer the questions appropriately and write their answers convincingly, the process of creation will be a smoother and more fun experience. But don’t write only speeches in your story or it will become a screenplay!

Don’t be too concerned about the length of your story, but do watch out for repetitive use of a word, or use of too many words that have the same meaning. The flaw of using one word over and over again is called “wordiness.” For example: “That word obviously has the exact, precise meaning but obviously I can’t use it.”

Doesn’t that line seem a little stupid? As you can see, the word “obviously” only needs to be used once in this example. And since the words “precise” and “exact” have the same meanings, repetitiveness decreases the power of the story’s tone, making the narrative boring.

Try to match the tone of the story with your own writing style. For example, if you don’t feel comfortable writing with big words, don’t use them! It’s more important to make sure your writing is coherent than to show off. It’s also important to have a sense of character and place.

(You can’t have a surfer saying, “Dude, I totally don’t get that,” at Oxford University in England!).

Don’t be afraid to explore during the writing process.

Your rough draft shouldn’t be your final draft, it should just include vague ideas of your story. It’s also helpful to try to think of a conclusion before you write down the plot—your starting and ending points should be clear in your mind, even if the in-between scenarios might be unclear.

A good story has the power to make your out-of-reach life come alive. Even if a story seems absurd (maybe yours is about flying humans because you want to fly!), you should write it in a way that makes it believable. JK Rowling’s Harry Potter books might be fantasy, but her writing style makes the world of the story seem convincing (I actually believe that Hogwarts exists!).

With the proper composition, you can do anything you 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, because that is the best way to learn and the best way to live!

by Pinal “Pinky” Patel pinkdreams_1.tripod.com

42

ABILITY

ABILITY 43

44

ABILITY

Photos by: Nancy Villere - CrushPhotoStudios.com

A

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 Diary 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

ŠPhotographer/ABC Studios

L to R: Moore and actor Jason Alexander on the set of Criminal Minds 46

ABILITY

L to R: Joe Mantegna, AJ Cook and Moore

Cooper: So you stay pretty active, then.

Moore: Sure. The only sport I’m not all that good at, which shouldn’t admit, is basketball. I guess I’ve got white man’s disease because I’m half white.

Cooper: You can’t jump?

Moore: Oh, I can jump, I just don’t have much of a left hand. I can play a mean game of horse, though. But no, I’ve done every kind of sport. I love that stuff. Before Hollywood, I thought I was going to be a baseball player.

Then I got into cycling, just because I was doing mountain bike stuff, and I met some guys at the show and 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?

As long as you’re connected to your bike, you look really cool, but if you’re not connected to your bike, you just look like a man in tights, which is not very cool.

Cooper: I was just in Ireland, where Lance Armstrong was doing the Tour de Ireland.

Moore: Oh yeah? I guess the guys I work with are like a level below Lance Armstrong. They do semi-pro racing and all that. Me, I’ve just got the fancy tights, I’ve got the fancy all-carbon-fiber bike. I look the part, but I’m just an actor riding a bike. So I act like I can ride.

But, yeah, I guess I really try to do a little of everything.

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 go and I do the sand dunes, I do the Santa Monica stairs, I ride my bike, I box— Cooper: The sand dunes? Does that mean you run the sand dunes?

Moore: Yeah. It’s like 100 yards straight up. A lot of the football players train out there, some of the basketball players. I think Kobe Bryant gets out there with his trainer and does it. But yeah, I just love the hot weather and I love exercise, so I keep it together. A good black don’t crack. But I’m getting older, so it’s not as easy anymore. Running takes its toll.

Cooper: Tell me about your experience with your mother’s diagnosis of MS. How did that come about?

Moore: My mother’s been diagnosed for about 12 years now, and it’s been tough. It was tough on her physically and it was tough on both of us emotionally. I think both of us were in denial in the beginning, so it took some time to kind of get out of the gate and really embrace that she had it. Then we could focus on what it was and how to combat it. I’m an only child raised by a single mom, and I really tip my cap to her, because all my life she was my mentor and my hero. We tell each other that we were at the front of the line when they were handing out mothers and sons. She always was trying to save the world. She was trying to save the neighborhood. She ABILITY 47

was the neighborhood mom.

Cooper: Where was this? Where did you grow up?

Moore: Oh, I grew up in so many different places, but for the most part in high school I was up in Palo Alto.

For the first six years of my life I lived out of the country. I was born in Oakland, California, here in the States, and then I didn’t live in the States again until I was almost seven. I lived in Denmark for the first three years of my life.

Cooper: You’ve got a really thick accent.

Moore: (laughs) Yeah, right, maybe a little bit. My mother has the real strong accent. My mother’s from Boston, so it’s, “Shemah, pahk the cah, Hahrvahrd Yahrd,” and all that. If I’m around people with whatever accents, I can usually pick them up. Danish was my first language, but I only really knew enough to say, “My diaper’s dirty and I’m hungry.”

And then I went to Bahrain and lived there for three years. So Denmark and Bahrain were our two mainstays as I was growing up.

I’m grateful for that time of my life, though. I’m grateful for the travels and all of it, because I think it all instilled values and a sense of broad thinking. The way I approach my life, I don’t see color, I don’t get caught up in all that stuff that a lot of Americans get caught up in.

I kind of have a European mindset. I feel more comfortable when I travel with people. Here in America there is still a very serious class system. We have a black President, but racism is far from over.

But I’m blessed, and I’m beating it. I’m living a dream life. I’m doing things that people wish they could do. I take none of it for granted. I don’t have a family. I don’t have a wife and kids yet. I’m turning 40 this year, so that’s hopefully around the corner.

Cooper: How did you get this connection between your mother getting MS and then making a decision to come out and start supporting the MS Society?

Moore: I didn’t. My mother put me in a British private school so I could learn English because she knew she was going to bring me back to the States eventually. I was born in the ’70s. Civil rights were a big thing and Martin Luther King had just been killed in ’68. There was a lot of unrest.

Moore: Well, my mother is a woman who’s pretty indestructible. She is so smart, so charismatic and ambitious, and she’s always thought outside of the box. In the late ’60s, to marry a black man and then to raise a biracial child on her own, all over the world, she really had to have a strong mindset. And so when her MS kicked in, I was seeing this superwoman, so to speak, kind of find her Kryptonite and deteriorate. It was shocking. It was humbling. It was scary. She’s all I’ve got. I don’t have any brothers or sisters.

It was a trendy time for interracial relationships, but they were not very accepted. My mother didn’t want to raise me in a racist environment any more than she had to. It was tough. But my mother was very smart, highly

So in the beginning, it was just about figuring out what her symptoms were, figuring out what medicines were available. We were shooting in the dark. She was guessing and just taking the word of doctors. And then

Cooper: Did you learn any Arabic?

48

educated. She taught mathematics and English overseas.

So she was able to get us opportunity and she was able to get me out of that kind of racial unrest.

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 people 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 support MS and to support me in my fight for Mom. It inspired my mother. It humbled her. It made her cry.

Often people who are afflicted by various diseases, whether the disease is MS or anything else, feel alone and feel misunderstood. They have no voice. We now have a better, more well-rounded knowledge of the disease and we’re much more specific about the type of meds that my mother has to take and how we can fight.

Cooper: What’s she taking?

Moore: She’s on interferons. Four years ago she was taking an injection every day, but now she does injections once a week, which is more manageable. Just having to stick a needle in her every day was tough, and she was having problems with her hip. She thought it was the MS, but it was something altogether unrelated. She was doing Botox injections for a while.

Four years ago we really thought my mother was on the verge of not being able to walk, and that scared me because I wasn’t used to seeing my mother like that, but also because her will to live and just to enjoy her daily routine was dissipating. And now, four years later, she’s dancing in her kitchen and going to ball games and she swims. She’s able to travel again. She just got back from a three-week trip to Denmark, actually. So she’s got her zest and her spunk back, and that’s great.

And when something hits you close to home, you know you’ll do whatever you can to help give that person you care about a better quality of life. So I go to different MS events with her, and I ride the bike for her. And today she’s coping with her MS, and she’s walking and singing and dancing, living her life. She has her good days and her bad days. She loves yoga and swimming and visiting with friends.

Cooper: There’s an organization called YogAbility, specifically geared towards people with MS who are interested in learning yoga.

Moore: Yeah, yoga’s amazing. It’s hard for me, personally, because I don’t have the patience for it. And I’m pretty in shape and athletic and all that, but yoga is not easy. People think it’s like meditation or just sitting around. With all of the stretching and the positions, you have to be flexible, and strong emotionally.

Cooper: But that’s what yoga is for, right? Making you more flexible and stronger emotionally.

Moore: Oh, yeah. My mother used to go to a retreat called Kripalu, up in Lennox, Massachusetts. I think John Travolta and Woody Harrelson have been known to go there, where you spend a week, a month doing yoga.

My mother actually got her yoga teaching instructor’s license, so she’s fully committed and she loves it. But ABILITY 49

50

ABILITY Photos by: Nancy Villere - CrushPhotoStudios.com

physically, there are certain things she can and can’t do.

Yoga really is a life-saver for her, though. It’s her meditation. It’s her therapy. She’s got her mat at the house, and she sits with herself for an hour or two. Between that and swimming and being with her friends, that’s pretty much her routine. She’s good.

Cooper: You know, the American Medical Association has now reversed its opinion on marijuana as a medication option. I know a lot of people with MS and— Moore: Yeah, she has a prescription. My mother is a hippie, and now she’s got permission by the government to get high. She’s doing just fine. (laughs) I was born April 20, and 4/20 is, like, the weed national holiday.

Cooper: I didn’t know that.

Moore: But I know that when I smoke I’m a miserable mess. My body doesn’t line up with it. One hit, I’m okay. I giggle, I talk a lot. Two hits, it’s a wrap. I’m 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.

Cooper: Does your mom’s house have a pretty accessible layout? I see your place has a lot of stairs.

Moore: Yeah, this house isn’t set up for it, but my mom’s place is completely set up for a wheelchair, walker, scooter, the whole bit. What’s great is that, in the last three years, she doesn’t need any of those devices. She really is much more mobile than she used 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 the walker anymore. Now she’s really able to get around.

Sometimes she gets overheated, though, which is one of the symptoms of her condition. And for a while she was falling a lot, because of her bad hip. So that was just scary and dangerous. But those days seem to be over.

She’s 66 now, but three years ago she was moving around like she was 85. Now she’s moving around like she’s her age or younger, and her personality and her spirit is back to that of a twenty-year-old. She’s excitable and fun and wants to do stuff. It’s really, really nice to see. It’s really a relief.

my world of Hollywood that I think she would enjoy, I include her, whether it’s just so she can walk the red carpet and feel fabulous or just come support me in something I’m doing.

Cooper: We saw your picture on the red carpet where you were showing off your six-pack.

Moore: That must have been a picture from 10 years ago. I don’t do shirtless pictures today. (laughs) Cooper: Well, competitive biking is a pretty intense exercise.

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 challenge. That’s what I love about the MS ride. You’re raising money for MS, but also you can get out there and be competitive or challenge yourself. And you get to see parts of the world on your bicycle that you would never see from your car.

It’s tough on your body, sure, and you’ve got to go through the soreness and all that. But once you get used to it, and once your muscles get conditioned for it, then you can just enjoy the ride. I had a friend who did the San Francisco to DC ride, raising money for cancer. It took him two and a half weeks. He would sleep in vans on the side of the road at night and get on his bike and ride throughout the day.

Cooper: Two weeks. That’s a good clip.

Moore: Well, he’s a serious cyclist. This isn’t just my friend next door. He rides 60 miles a day before work, and then on the weekends he’ll go do 200, 300 miles.

Cooper: Do you think you’ll ever get to a point where you’re doing long-distance rides like that?

Moore: I don’t really have the ambition to be Lance Armstrong. I’ve got plenty of ambition in other areas of my life. I just enjoy the sport. I like getting myself into shape so I can do 100 miles on the weekend. For about four months, I was riding to work on my bike and leaving the car at home.

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 suffer from clinical depression?

Moore: Really? Well, listen, my mom has her moments.

But she’s got great friends, a great support group, and she’s never alone, which makes me happy. I’m down here in LA, and my schedule’s so crazy with work that I don’t get to see her as much as I’d like to. It’s not so easy to just get up there. I mean, San Francisco is not that far away, but I probably get up there four or five times a year. Any time there’s something going on in

Moore: That’s right. And good black don’t crack. It’s all about how you feel. So I’m excited for 40.

Cooper: Are you going to do anything special for your birthday?

Moore: Well, for my 39th birthday, I had an all-white party right here in the house, in the backyard. There were 340 people here.

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 etiquette, a whole different swag.

You just see a sea of white: white bikinis, white suits, white sundresses. 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, sometimes I think maybe the 40th birthday party is going to be an allblack party, with headstones in the grass that say “Death of a Player.”

Because my mother’s been begging 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 college 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 represent 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 is good, you know? nationalmssociety.org abc.com/primetime/criminal_minds photo by: michael darter

Honestly, I think there are lots of beautiful women in 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 feeling—and I don’t know why I feel this way—but I am a sucker for an accent. So I have a feeling that whoever 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,” saying a bunch of things I didn’t know, but it was sexy.

Cooper: I met someone from Costa Rica who kept calling 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

N

etworking. I used to think of it as an awful, dirty word and an even sneakier and sly practice.

From passing around cards to shaking hands, everything seemed fake and manufactured and disingenuous. Yet people applauded it, spoke so highly of the benefits and importance of this practice, this networking business. What was I missing?

This past August I witnessed a kind of networking that completely changed my mind about what it is and why it’s really important.

It was a humid, overcast day in Ocala, Florida, and we were building a home for Cynthia and William King. A couple of weeks earlier, I had started working with ABILITY Awareness as a new AmeriCorps volunteer, and I was excited to witness the ABILITY Build program for the first time. In addition to Habitat for Humanity site supervisors and construction managers, my coworker Laura Evans and veteran ABILITY Build volunteer John Siciliano, we worked among a team of fresh ABILITY Corps volunteers from United Cerebral Palsy of East Central Florida and Developmental Service Trainers, Inc., an organization which helps people with developmental disabilities learn job skills to become more employable.

Although most of the volunteers had never been on a build before, Durren Omens immediately started reinforcing the frames around the doors and windows with thin metal braces, each about two feet long. After a few heavy hits of the hammer, the nails were in. Durren explained that his uncle worked in the construction trade, so he’d learned a lot from him.

While about half of the team sweated in the morning heat, struggling to align two-by-fours to build the internal frame walls, Durren made his way around the whole house with ease, eagerly asking what to do next when he’d finished a task. Half of our volunteers went to another nearly-completed Habitat house just behind the King’s house to help level the dirt in the yard with shovels and rakes.

By two in the afternoon, the construction workers were ready to start packing up. The clouds that had shaded us

from the hot, August sun all morning were darkening.

Within the hour, rain would begin to fall.

But the enthusiasm of the ABILITY Corps never wavered. Some volunteers suggested coming out again on Friday, and, when they were told that Habitat would not be building that day, they returned with a follow-up offer to come back on Saturday. Even some of the shyer volunteers, who had expressed hesitation at coming out that day, now confidently asked when they could help out again. Meanwhile, I watched the trainers and caregivers exchange information with workers from the Habitat affiliate so that future builds could be arranged.

At the ABILITY Build I was able to observe the value of networking, particularly for people with disabilities.

All too often, businesses, nonprofits, and volunteer organizations underestimate the capability of people with disabilities. This perception has led to a nearly 70 percent unemployment rate for working-age adults with disabilities, and has limited volunteer opportunities for all people with disabilities. Through the ABILITY Build program, ABILITY Awareness is not only breaking barriers to entry by changing perceptions about what people with disabilities can do, but is also creating valuable networking opportunities where workers can meet people who might connect them to places where their skills are needed.

My first impression of networking was that it was simply a cheap way to weasel my way into a job by meeting important people rather than by demonstrating my skills and abilities. But since my experience in Ocala, I’ve come to see networking opportunities in a much different light. Networking serve as both a means to demonstrate ability and to build bridges between people and companies for many to cross—not just people seeking help or employment.

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 opportunities. 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 disparities 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 disabilities present their own health care challenges, the potential solutions have broad implications for the general delivery of health care. For example, psychiatric disorders and other specialized health problems are common among adults with intellectual disabilities, 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 diagnoses along the autism spectrum. Epilepsy is also a frequent co-diagnosis for those receiving specialized psychiatric services.

A

round the globe, health and mental health services grapple with two concerns that have reduced the effectiveness and increased the costs of health care: low levels of worldwide health literacy and a lack of effective support for self-care of chronic health problems.

Recently, however, studies at the Westchester Institute for Human Development (WIHD) are finding that innovative use of personal computers and communications technologies can help change this troubling status quo, beginning with a capacity for providing improved support for people with intellectual disabilities.

A regional organization in New York, WIHD is part of a national network of university-affiliated centers dedicated to improving the lives of people with disabilities through education, service, and research. Services provided by the organization, which often follow a child throughout his or her lifespan, include comprehensive medical and dental care programs, as well as educationbased support and guidance into the working world.

“Whatever need we had for my daughter, WIHD has had the service to address it,” said Barbara Stein, the mother of a 19-year-old with Down syndrome who has been utilizing WIHD services for 17 years.

NEW TECHNOLOGY AT WIHD: HEALTH CARE CHALLENGES & SOLUTIONS New technologies at WIHD have been developed to aid 56

ABILITY

HEALTH DISPARITIES FOR PEOPLE WITH MENTAL HEALTH DISEASE VS. PEOPLE WITH INTELLECTUAL DISABILITIES Research done at WIHD illustrates that people with chronic mental health problems and people with intellectual disabilities share many of the same health disparities and health outcomes. Available data also shows that people diagnosed with mental illnesses often die prematurely from a variety of causes. People with psychiatric disabilities experience heart disease, diabetes, obesity, high blood pressure, and other severe medical problems in disproportionate numbers compared to the general population. More specifically, people with mental illnesses who are served by our public health systems die an average of 25 years younger than the general population, and people with intellectual disabilities carry an increased risk for secondary health conditions, including cardiovascular disease, diabetes, high blood pressure, obesity, and osteoporosis. This demographic of people is also less likely to routinely exercise, resulting in generally poor health outcomes and reduced life expectancy.

Health care systems usually try to maximize the use of generic health and mental health services for people with intellectual disabilities, a strategy which often includes active policies and recommended practices designed to facilitate access to general health and psychiatric services. This sort of care includes calls for close collaboration between general and specialist service providers, with clear pathways for the transfer of

people with intellectual disabilities and mental health problems between specialist and generic mental health services, as well as plans for joint care where necessary.

In many ways, the coordination of health care delivery and access between generic and specialist service providers is the same across all patient groups, however, the often extensive health co-morbidities among persons with intellectual disabilities present their own challenges. Additionally, many health care systems find that effective care of people with chronic health problems requires very targeted interventions and closely coordinated generic and specialist care—something which these systems often have difficulty providing.

Because of these limitations, much has been made of the promise of electronic health records and the possibilities of telehealth strategies for achieving more coordinated and better care, as well as improved health outcomes.

However, to date these innovations have not become fully integrated into mainstream health care delivery.

WIHD’s goals for innovative health and mental health services are built upon the use of accessible information and communication technologies, exploring the possibility of truly integrated health care delivery models with technologies that are designed to ensure that they always promote self-determination in health care for people with intellectual disabilities. These exciting technologies can also remove barriers to the use of effective health care models through improved health literacy and health promotion strategies.

This powerful shift in focus toward innovation in the promotion of self-determination in health care builds on the voices and experiences of those who are directly involved and affected. Among the critical elements in this approach are the creation of individualized health care plans and the use of self-management education programs—an endeavor which stresses the importance of use of an electronic health record to promote effective

care coordination among the medical care team, the benefits of remote care management, and the advantage of close communication between patients and their health care team.

THE NEW CENTER ON DISABILITY, HEALTH AND TECHNOLOGY AT WIHD: ADDRESSING HEALTH CARE NEEDS FOR PEOPLE WITH DISABILITIES Today, self-management health education and health promotion programs are not targeted or adapted for people with intellectual disabilities. As such, they do not address difficulties in developing an understanding of the effects of the behavior of people with disabilities on the health of the individual. Additionally, few of these programs include attempts to educate health care professionals in working collaboratively with people with intellectual disabilities and with their caregivers in community-based health programs.

The work of WIHD’s new Center on Disability, Health and Technology is designed to address all of these important issues. Its mandate for the promotion of health and well-being among people with intellectual disabilities includes the development of effective health promotion interventions, the examination of risk factors and measures of health, functioning, and disability, and the evaluation of the potential for existing and emerging information, communication, assistive and smart technologies to enhance the health of people with disabilities.

This organizational mandate builds on three areas of technological innovation to create accessible health care support. The first such innovation is the development of an online health education training curriculum designed to be fully accessible by people with different cognitive and communication abilities.

This curriculum, “My Health, My Choice, My ABILITY 57

FIGURE 1

Responsibility” can be accessed using the touch-screen potential of many current personal computer technologies from full-size desktops to small ultramobile computers and cellular phones. The program is incorporated into a customized patient-provider portal called “Desktop Discovery,” which is developed by the WIHD accessible 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 represents, 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 individual 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 education and self-advocate trainers, or as an independent online resource. Session topics include such areas as:

FIGURE 2

Figure 2: The screen display for the online curriculum, “My Health, My Choice, My Responsibility”, software designed to integrate with the electronic health record system used by WIHD and provided by its EHR record provider CureMD.

• Maintaining a healthy lifestyle • Setting goals, getting support, and developing a health plan • Knowing your health history • Understanding your own health and wellness needs • Preparing for medical appointments • Speaking up for good health Online resources also include tools for developing a personal health care self-management plan and for collecting 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 applications 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/caregiver/health care provider portal. Full customization 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 that can be customized to meet the health care needs of the individual. In the example shown in Figure 3, an individual with a disability can use the display to access links to video clips which show personal care assistants the appropriate ways to help with mobility or personal care issues.

For someone who does not have a disability, the personal computer display might change during the day to provide prompting and coaching through a critical health care task [Figure 4]. This technology has been used on individual smart phones to coach dental patients with very poor oral hygiene practices through an effective oral

FIGURE 6

hygiene program. “Janice,” the application might say, “after you eat every meal, you need to go get your brush and your toothpaste and brush your teeth.”

Limitless aspects of additional self-management support can be made available to an individual through customized information, or through the use of tools for nutrition management [Figure 5], as well as through

Under the Care Efficiency and Affordability Law, a two-year grant has been awarded to WIHD from the New York State Department of Health.

The aim of the grant is to demonstrate how the use of Telemedicine strategies can enhance primary care access for individuals with intellectual disabilities, reduce the inappropriate use of emergency rooms, and improve care for those suffering with chronic diseases.

WIHD has also received a five-year grant from the Administration on Developmental Disabilities, as part of a consortium of University Centers for Excellence in Developmental Disabilities to develop and demonstrate model curricula for the enhancement of self-determination in health.

By enhancing its organizational practice of making advancements for people with intellectual disabilities, WIHD furthers the goal of empowering people with disabilities 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 visiting 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 for the individual, and a continual striving for best practice in the field.” Armed with its new initiatives, WIHD continues to work to reduce the often critical health disparities among people with intellectual disabilities, and to address problems that currently disadvantage today’s health care delivery.

by David O’Hara, PhD Chief Operating Officer, Westchester Institute for Human Development 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.

Jessica ___ 9. __ Mans car race 10. Race unit 11. Illinois representative who introduced the Inclusive Home Design Act to increase the number of homes built with federal money that are accessible for people with disabilities. Jan ______ 14. Strong and healthy 15. Science fiction writer, __ Doc Smith 17. Jottings 19. Another name intro 20. Dover locale 21. “The right way to __ is to __.” (Anon) 22. Football occurence when scores are tied (abbr.)

24. Entrepreneur's degree, for short 25. Champion for children's health and protection of people from tobacco products through legislation (2 words) 28. Be indebted to 29. The English Patient actor whose character suffers from burns and disfigurement (first name) 33. Much used two-letter Scrabble word 34. Chris Pendergast's famous journey, “____ for Life” 36. Business promotion 38. Alternative maker 39. Chooses 42. Great composer who only “heard” his music in his mind 43. Simpsons' character 44. Canadian's favorite question?

46. Speech-impaired main character of The Piano 47. 1991 Danielle Steele novel and TV series about a photographer who is paralyzed by a horse riding accident.

51. A ___ do attitude 52. DiCaprio character in What's Eating Gilbert Grape who has learning difficulties 53. Santa checks it twice 54. Famous inventor whose wife could not hear; while trying to help her, he discovered the telephone

DOWN 1. Offer free service to the community 2. Trophy 3. Retreat 4. South African leader in disability rights who has been named the Special Rapporteur of the Commission for Social Development for 2009-2011. Shuaib ______ 5. Soothing juice 6. Fresh 7. Wedding reception centerpiece 8. Windows system 12. New Haven locale 13. Go out with 14. Salad cheese 16. Former wife of a Beatle, who competed on Dancing with the Stars on her prosthetic leg (first name) 18. Bathroom dryer 20. Actress who had 50 first dates 21. Gun or King?

23. Strange 24. “I did it __ way” 26. Oui's opposite 27. “The” in German 30. Over 31. Type of TV 32. Overcome, despite obstacles 33. They speak louder than words 35. Cooked sufficiently 37. Paraplegic character and writer of Born on the Fourth of July, played by Tom Cruise in the film.

Ron ____ 39. President who declared a federally-recognized National Day of Service and Remembrance 40. Protection 41. Teach 45. Get better 48. Catch in the act 49. The loneliest number 50. __ , the people

answers on page 62 ABILITY 61

CORRECTION - It wasn’t you! Below are the correct ANSWERS for the Oct/Nov Scott Caan issue. We apologize for your agony and pain.

N

S

W

E

R

S ABILITY

A

62

ABILITY 63

64

ABILITY

66

ABILITY

E v e n t s

&

C o n f e r e n c e s

ABILITY 67

68

ABILITY

ABILITY 69

74

ABILITY

75

ABILITY

ABILITY 75

76

ABILITY