ABILITY Magazine

MAGAZINE

VOLUME 2011

HOWIE MANDEL

JUN/JUL

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 HOWIE MANDEL JUN/JUL 2011

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70989 35509

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$4.99 ISSUE 06-11

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M ANAGING E DITOR Gillian Friedman, MD

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

E DITORIAL D EVELOPMENT D IR .

Pamela K. Johnson

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

E DITORS

Dahvi Fischer Renne Gardner Regina Hall Molly Mackin Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

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WIN WIN — Tickets to Ride

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ASHLEY’S COLUMN — Let the Racing Begin!

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SENATOR HARKIN — Where Are the Jobs?

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DRLC — Rescue 411

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BAD BOYS — United Airlines, H&R Block

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HAMILL — Bodyslamming a Theater Near You

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FRANKENTONGUE — How I Licked Tongue Cancer

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PARALYMPICS — A Leg Up on the Competition

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UNITED CEREBRAL PALSY — The Power of Play

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ZAMBIA — Advocates for African Children’s Rights

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RECIPES — Tasty, Cancer-Fighting Dishes

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HOWIE MANDEL — Showered with Riches

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DYSLEXIA — Tangled Up in Blues

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Paralympic Games Beijing

HUMOR THERAPY — Jockey: A Horse Tale (Pt. 1)

Music Within

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H EALTH E DITORS

Moses deGraft-Johnson, MD Larry Goldstein, MD

C ONTRIBUTING W RITERS Hamill p. 18

Recipes p. 38

Ashley Fiolek Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Allen Rucker Kristen McCarthy Thomas Betsy Valnes

W EB E DITORS

Stan Hoskins Mary Shafizadeh

G RAPHIC A RT / I LLUSTRATION ABILITY’s Crossword Puzzle

C O N T E N T S

Howie Mandel interview p. 40

Scott Johnson Melissa Murphy - Medical Illustration Anna Blagovidova

P HOTOGRAPHY

Nancy Villere— CrushPhotoStudios.com Zambia p. 35

T RANSCRIPTIONIST Sandy Grabowski

DIRECTOR OF BUSINESS AFFAIRS Ryan Brown, JD

MARKETING/PROMOTIONS Kayla Cherry Stan Hoskins Andrew Spielberg

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EDITORIAL

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The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2011 ABILITY Magazine

the father got the child hooked on cigarettes at the ripe age of three, in hopes of stunting his growth. By eight, the boy was up to three packs a day, and had stopped growing completely, which pleased his father to no end.

“You done good, mijo,” he’d say. And Felipe would just smile, flashing his yellow-stained teeth, trying to suppress an emphysemic cough.

Over time, it was obvious that the boy’s destiny was to become a jockey. Each night, he would watch television from the back of the couch, his butt reared in the air. Every so often he’d slap the cushion and yell, “Hi-ya! Home stretch!” His favorite show, of course, was Mister Ed, starring a palomino horse who could talk; and, it wasn’t unusual to find the boy posing on the front yard, with a lantern in his hand, his jockey underwear giving him a bit of a wedgie. elipe grew up around stables, where his father trained horses for more than 25 years. But Felipe’s dad was never considered a success, perhaps because of the names he chose for his thoroughbreds. (“Laggin’ Behind,” “Trottin Too Much,” and “Too Lazy To Run” were just a few of his brainchildren.) Even though the horses more than lived up to their names, the stables were not well-known, and the elder Felipe yearned to be taken seriously in the racing world. He longed to be a somebody who merits mint julips at the happy-hour price, any time, day or night.

His son would be his ticket to fame, he believed. He would be groomed to be a jockey. A great. Big. Little.

Jockey.

The elder Felipe had a special relationship with his son, because he had raised the boy all alone after his wife was killed in a freak incident years earlier. The wife had walked in on her husband as he was lip-locked with one of his prized fillies. According to the elder Felipe, this was all a misunderstanding. Man and beast were simply sharing a carrot—getting their antioxidants in, if you will. But when the wife confronted the filly, an argument ensued. The mamacita fired off a tamale missile at the home-wrecking horse, which struck the animal in the nose. Ultimately, the filly got the last whinny, however, as the woman was later found in a heap, with a huge hoof mark stamped on her forehead. The horse was put out to pasture, while the wife was buried in a pasture, after a brief eulogy by the local pastor.

Little Felipe’s love for horses developed early. As soon as the boy could walk, his father crafted a wooden horse’s head and stuck it on a broomstick. Both he and the child would run around the barn with the contraption between their legs, each making galloping noises.

Afraid that his boy would grow too tall to be a jockey, 6

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On his tenth birthday, the boy’s father took the little munchkin out to the barn for a surprise. Standing in front of a new colt, his father said: “Happy birthday, son.”

“A brand new horse!” Felipe exclaimed.

“No, the horse is mine. But this whip is for you,” Felipe’s father said, handing the whipping stick to the child.

The whip was not actually new. Felipe had kept it from his early S&M club days, always vowing to get back into that hobby when time permitted.

The boy loved the riding crop, even though the colt did not. From morning ‘til dusk, Felipe rode the colt through the meadows, racing the wind until the wind lost. Sometimes he would gallop so fast that he would literally break wind. Later, he would find a quiet place to lie down, stare at the clouds and daydream about winning the Triple Crown.

As the boy grew older, he began to feel inferior about his size. Kids at school teased him, calling him nasty names like Short Bread or Minnie Meat. Some even taunted him by leapfrogging over his head. It wasn’t long before the youngster developed a Napoleonic complex, attempting to lord over others to compensate for his small stature. He became a ruthless tiger, attacking anyone who mocked his size. One day, his English teacher asked: “Do you know what a tall tale is?”

“It’s a story,” was Felipe’s reluctant reply.

“That’s the short answer, but I’m looking for a little more,” the teacher said.

Felipe sat quietly as his insecurity mounted. Was this old bag pushing him?

“What’s a tall tale? It isn’t a short story?

You’re a tiny bit off,” the teacher said.

“Come on now. No more small talk.”

Felipe jumped up and charged across the older woman’s desk, plowing her frail body into the chalkboard. Eventually, the alcoholic wood shop teacher came to her rescue, and peeled the boy off the battered, shell-shocked woman. Staggering a bit, the teacher carried the pint-size punk out of the classroom, holding him by the seat of his pants, the child’s legs flailing as he yelled, “I’m a big boy!”

Soon after that incident, young Felipe dropped out of school to concentrate on his goal of becoming a jockey. As a jockey, he would not be judged, he believed.

Size mattered, of course, only not in the way it usually does.

Every morning the budding jockey raced around the track, beating his time from the previous day. Finally, after a year, his father said, “Your times are fantastic, now let’s try them on a horse.” Felipe cheered, because his feet were killing him—he was tired of husking his own corns.

When he turned 16, Felipe received a racehorse from his dad, who spent his life’s savings on the purchase. As his father picked glue out of the horse’s mane, the boy asked where his father had scored the prized animal. “Walmart,” his father said, patting the boy on the head.

He didn’t have the guts to tell his son that the equine was an old Amish get-about, used to transport peanut-butter pies to roadside stands.

From the beginning, the fledgling jockey and the half-ass thoroughbred were incompatible. Felipe would feed him sugar cubes only to have them spit back in his face.

“You wanna piece of me?” the jockey would sneer as he got near the horse’s snout.

The ornery animal would rock up on his hind legs, releasing a disgruntled “neigh.” And every time Felipe climbed up on the horse’s back to ride him, the animal would toss him to the ground, ABILITY 7

and then stand on the little jockey’s backside as if to say, “I’m king of the mountain now.”

One day, the pair embarked on a trot through the country, and the jockey attempted to get the horse to gallop. Unfortunately the ratty animal wasn’t going for it. The horse felt it was a lazy Sunday.

(Except it was actually a Tuesday.) Felipe kicked the horse. Nothing. He whipped the horse. Still nothing. Finally, he leaned over and whispered to the creature that there was a bumblebee on his ass.

The horse darted off like a spooked cat. The jockey had never felt such exhilaration. The wind whipped through his hair as if Felipe had just eaten a York Peppermint Patty. Suddenly, the horse stopped on a dime, causing the tiny young man to fly off its back and land face first in a steamy mound of manure.

In a fit of rage, the jockey leaped to his feet, squaring off with the cantankerous animal. “What’s up with that?” the boy asked.

The horse rocked his head back and snickered as it flashed its big pearly teeth, which really set the little guy off. Felipe felt he was being dissed by the horse, so he slapped the bit out the beast’s mouth. The two were now nose to nose, staring one another down.

“Pig,” the jockey snapped, just before the horse snorted and then pushed the jockey back with his muzzle, knocking him on his itty-bitty keister.

Felipe stood up, his tiny chest heaving. He grabbed the hairy monster by the ears, wrapping his little legs around its neck. The horse didn’t appreciate the intimacy. In fact, a feeling of claustrophobia washed over him, and he darted off, sporting a jockey necktie.

The bumpy ride caused the jockey to lose his grip on the horse’s ears, but luckily his ankles were locked around the animal’s nape. The only hitch was that now his head was dragging against the ground.

“Whoa, boy!” the little guy screamed as grass clumped in his hair. The frazzled horse continued to rip through the forest, dash over the rocks, leap over the logs and splash through the muddy stream, as the boy’s head—ba-dump, ba-dump-dump— took quite a battering. The rampage finally ended at a stream, where the horse stopped for a little liquid refreshment. Felipe fell into the river and was swiftly carried downstream, tossed wildly, to and fro, through the rushing rapids.

Find out what happened to Felipe and the ratty horse in Part II of “The Jockey”

by Jeff Charlebois “Ham on a Roll” 8

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in for Our Vets Recently, ABILITY Magazine joined forces with Window World, the nation’s largest replacement-window company, to sponsor the “Win-Win” Competition. The month-long promotion attracted more than 4,700 entrants, from which six lucky semifinalists were chosen to attend the 100th anniversary of the legendary Indianapolis 500.

As in years past, winners were selected by region—Northeast, Southeast, West, Central, and Great Plains—but this year’s competition added a new category: one specifically for Wounded Warriors, active or retired military veterans.

Nearly 1,000 active duty or US military veterans threw their dog tags into the ring, a point of pride for ABILITY Magazine’s Editorial Development Director, Pamela K. Johnson.

“Veterans have sacrificed so much for this country,” Johnson said. “We at ABILITY Magazine are proud to have lobbied for a sixth category in this contest, one that allows a veteran to enjoy the race and be a part of a great Memorial Day celebration. It seems a fitting tribute to their service.”

This year’s Win-Win semifinalists were veteran Gary Boltenhouse of Chillicothe, OH; Kathryn Geiger of Temperanceville, VA (Northeast); Carlos Hayes of Hueytown, AL (Southeast); Kristi Fisher of Thornton, CO (West); Geralyn Enriquez of Houston, TX (Central); and Sue Drake of Olathe, KS (Great Plains).

Each semifinalist and a companion received complimentary travel, accommodations and tickets to the Indianapolis 500 in Indianapolis, IN, along with VIP access to other Memorial Day weekend festivities. If the Window Worldsponsored car, driven by John Andretti, had finished in first place, one lucky semifinalist would have gone home with $1 million. But for all involved, the opportunity to attend the race proved its own reward.

“As Window World, ABILITY and Andretti Autosport celebrated the 100th anniversary of the Indy 500, we were thrilled to have six very special VIP fans with us to share in the excitement,” said Dana Deem, president of Window World.

“ABILITY, the world’s leading magazine for health, disability and human potential, will continue to seek out partnerships that support our community, as well as spread our larger message of inclusion,” said Johnson. windowworld.com

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y racing season has officially started, so all of my practice and training is behind me, for now.

My only focus is on my racing!

The time has really flown since I started practicing for this year. I was involved with the Red Bull commercial, I did a short video skit with Drama (from the MTV show Fantasy Factory), and I’ve done quite a few interviews for different magazines—including the Red Bulletin, which is a Red Bull magazine from Europe that is now being published here in the United States!

to Colorado! As if that weren’t enough, the X-Games are right in the middle of everything! I’m really looking forward to those.

Hope to see you all at the races!

Since my last column, I’ve also done a crazy photo shoot for one of my new sponsors, Cycle Nano. Participating in that shoot was wild and a lot of fun! The owner of Cycle Nano, a guy named Ron, is really great and makes some fantastic cleaning stuff!

In South Carolina, I stayed at a place called ClubMX. It’s a great track, owned by Zach Osbourne, a professional motocross racer, and Brandon Hass. They are great people and so welcoming and fun to be around.

My dad has worked things out so I really don’t have to travel as much this year as I usually do. During my training, I tried to avoid lots of running around and flying so I could focus on being ready for the start of the season. I have changed some of my training programs (it’s a good idea to change some things, every now and again!), and am having fun riding and training again.

I’ve realized how important it is to keep having fun but to work hard, too. My dad always tells me, “Work hard now and play later!” Since my season has already begun, I am trying to keep doing the same things I’ve been doing for the past three months. In other words, I am trying my best—that’s all I can do!

This year’s racing season started off in California. Now we are headed to Texas. After a short break, I’ll be off 10

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ashleyfiolek.com

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One Christmas, when I was on leave from the Navy, I went with Frank to visit the Delavan plant. I was told the company would be hosting a Christmas dinner. I didn’t expect anything special. As it turned out, the company honored Frank that night: during his 10 years at Delavan, he had not missed a single day of work, and hadn’t been late once.

My brother’s commitment to his career is characteristic of how hard-working and dedicated people with disabilities are when given a fair chance. Frank worked at the Delavan plant for 23 years, missing only three work days, due to a blizzard.

He was a loyal employee who never took his job for granted.

WE MUST IMPROVE OPPORTUNITIES FOR PEOPLE WITH DISABILITIES

In crafting the ADA, our goal as public servants was to create more opportunities for people like my brother—and for all people with disabilities—to demonstrate what they could do. Too many Americans with disabilities remain held back by public or private fears, myths and stereotypes associated with their differences.

Dear ABILITY readers, Recently, I gave the keynote address at the US Chamber of Commerce’s Corporate Disability Employment Summit in Washington, DC. During my talk, I sounded the alarm on a disturbing trend: more than two thirds of Americans with disabilities are without a job, and adults with disabilities are leaving the labor force at more than 10 times the rate of adults without disabilities during this recession. This is unconscionable.

I asked the CEOs in attendance to help fulfill the promise of equality made by the Americans With Disabilities Act (ADA), by raising the number of workers with disabilities in the workforce to six million by the year 2015. Having grown up with a deaf older brother, Frank, I am particularly proud to have played a leadership role in crafting the ADA. My involvement in that endeavor has been a highlight of my career.

Like a lot of people with disabilities of his generation, my brother experienced discrimination and faced low expectations. It took a long time for him to find a job best suited to his abilities. Eventually, he landed a job at a manufacturing plant in Des Moines, working for Delavan Corporation. Mr. Delavan had decided he wanted to hire people with disabilities, and my brother was eager to work for him.

Frank became a drill press operator, making nozzles for jet engines. It was a great job, and there was never any doubt Frank took enormous pride in his work.

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I remain committed to doing everything in my power to advance the four important goals set forth by Congress with the establishment of the ADA: equality of opportunity, full participation, independent living, and economic self-sufficiency.

My central priority, as we enter the third decade since implementation of the ADA, is to improve employment opportunities and outcomes for people with disabilities.

Thanks in large part to the ADA and this country’s special education laws, we are now producing the best-educated people with disabilities in the history of the United States. And yet, while the majority of Americans with disabilities would like to be working, more than two thirds are not.

In the last two years alone, unemployment has proven disproportionately higher for workers with disabilities than for workers who don’t have them. The size of the disability workforce has shrunk from 5.3 million in March 2009 to about 4.9 million workers this year, according to data from the Bureau of Labor Statistics (BLS). Compared to broader labor-force trends, this drop illustrates that more than one in three American adults who have left the labor force in the last two years have been people with disabilities.

Although this disturbing trend has not received much attention from policymakers or from the public, it carries with it a momentous budgetary and social cost. As more Americans with disabilities leave the workforce,

Since 1995

the number of applications for Social Security Disability Insurance benefits increases, growing from an average of 200,000 new applications per month at the beginning of 2008, to roughly 250,000 per month by the end of 2010.

If we work together, I believe we can increase the number of adults with disabilities participating in the labor force to six million over the next four years. An expansion of the disability workforce by more than 1,000,000 workers in the next few years is achievable if we are willing to get serious about making it happen.

When I spoke to CEOs at last month's US Chamber’s Disability Summit, I asked for ideas and collaboration so that our policies might produce real results on the ground—results that mean jobs for people with disabilities and a strong, talented and loyal workforce for

businesses. If federal policies stand in the way of these efforts, I want to hear about them. Making a measurable impact on disability employment numbers is one of my top priorities, and will remain so as long as I am in the Senate.

Sincerely,

Senator Tom Harkin Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee harkin.senate.gov

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failing to incorporate the needs of people with disabilities into the city’s disaster preparedness planning. The Disability Rights Legal Center (DRLC) represented the plaintiff during the legal process.

“The city’s practice of failing to address the needs of individuals with disabilities discriminates against such individuals by denying them meaningful access to the city’s emergency preparedness program,” Judge Consuelo B. Marshall determined in her ruling. “Because of the city’s failure to address its citizens’ unique needs, individuals with disabilities are disproportionately vulnerable to harm in the event of an emergency or disaster.”

s recent events have demonstrated, natural disasters can have a particularly devastating—and, in many cases, lethal—impact on the disability community. Despite the best efforts of the US Civil Rights Divisons, this country is arguably no more prepared to meet the needs of residents with disabilities during a disaster than it was during Hurricane Katrina nearly six years ago.

In the aftermath of Katrina, Benilda Caixeta, a quadriplegic resident of New Orleans, tried for two days to seek refuge at the local Superdome. Despite repeated phone calls to authorities, she was found dead in her apartment, floating next to her wheelchair. No one had come to her aid.

Though a definitive number of people with disabilities killed by Hurricane Katrina remains unknown, a 2006 White House report revealed that 71 percent of the storm’s 1,330 victims were more than 60 years of age. This data suggests people who needed special care suffered disproportionately in a time of crisis.

In February 2011, a Los Angeles federal court reached a landmark decision that carried national implications: the City of Los Angeles was found to have violated federal law, including the Americans with Disabilities Act (ADA), by failing to meet the needs of residents with disabilities in planning for natural and other disasters.

This recent ruling is the first such decision in the United States.

The lawsuit—Communities Actively Living Independent and Free and Audrey Harthorn vs. the City Of Los Angeles and the County Of Los Angeles—determined the city violated the rights of people with disabilities, provided under the ADA and other federal and state laws, by 14

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Although Los Angeles has been no stranger to serious natural disasters—including a major earthquake in 1994, and wildfires in 2008 and 2009—the city still lacks adequate disaster planning for people with disabilities. Accessible emergency shelters, plans for providing services and medication at shelters, accessible transportation and evacuation assistance, as well as communication services that are available and accessible to people with a wide range of disabilities are minimal or entirely absent.

A recent series of disasters, including a tsunami in Japan and tornados and flooding across the Midwestern and Southern United States, underscores the need for better emergency preparation. During Hurricanes Katrina and Rita, many people with disabilities, including a number of seriously ill seniors, were left to die because of a lack of planning for their emergency care.

These and other such tragedies prompted the February lawsuit, a legal effort to make future natural disasters less hazardous for people with disabilities. Marcie Roth, executive director of the National Spinal Cord Injury Association, hopes that February’s federal ruling prompts other cities, counties and states to examine their own levels of emergency preparedness and avoid or mitigate loss of life among their populations.

“Benilda need not have drowned,” Roth told the US House of Representatives Bipartisan Disabilities Caucus in 2005, after she had personally placed calls to prompt the New Orleans woman’s evacuation during Katrina.

“People with disabilities are not in good hands.”

by Paula Pearlman Paula Pearlman is the executive director of the Disability Rights Legal Center, and a visiting associate professor of law at Loyola Law School in Los Angeles. disabilityrightslegalcenter.org

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T

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

WELCOME MAT FOR MADISON An Oregon school district has been ordered to allow Jordan “Scooter” Givens to bring his trained autism service dog, Madison, to school with him.

For nearly three years, Scooter’s parents’ efforts to get permission for Madison to accompany Scooter to class in the Hillsboro School District had been fruitless. But after US Attorney Dwight Holton and a senior attorney from the Civil Rights Division met with the district’s superintendent, the school agreed to allow Scooter to be accompanied by the service dog for a trial period. A highly trained animal, Madison provides important assistance to Scooter, recognizing when the student is about to behave in a manner that might endanger him, and then distracting him to prevent the behavior.

“Service animals assist students with disabilities across the United States every day of the school year without incident,” said Thomas E. Perez, an attorney for the Civil Rights Division. “Fears, generalizations and stereotypes are simply insufficient to deny access to a student’s service dog, and the department will continue to provide school districts with technical assistance to make sure they comply with the Americans with Disabilities Act (ADA).”

“Kids with autism deserve the same opportunity as the rest of us to grow and learn,” said Holton. “Scooter’s service dog will help him grow up to meet his full 16

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potential, which is something we should all expect and hope for our children.”

The ADA requires schools and other public entities and businesses to allow individuals with disabilities to be accompanied by service animals. Service animals cannot be denied access except in rare instances in which their actual behavior poses a direct threat to the safety of others or results in a fundamental alteration of the nature of a program. ada.gov nh.gov/disability/information/index.htm hsd.k12.or.us

UNITED AIRLINES DIPS WINGS United Airlines will pay $600,000 to a group of reservation agents with disabilities to settle a federal lawsuit.

The complaint arose from employees who charged that the carrier violated the ADA by refusing workers with disabilities reduced hourly schedules as a reasonable accommodation, according to the EEOC. The deal also entails that United end its blanket policy against reduced hourly schedules, while providing training to staffers who administer the company’s reasonable accommodation process, according to the terms of a three-year consent decree approved by the court.

Prior to 2003, United permitted reservations sales and service representatives to work reduced schedules to accommodate employees’ various disabilities, including multiple sclerosis, carpal tunnel and myasthenia gravis. By suddenly abolishing their long-standing practice and policy, United required all reservation sales and service representatives who could not work

full-time either to retire or to go on extended leave.

Once the leave expired, the employees were terminated, a practice that violated the ADA, the EEOC noted.

“A sweeping policy that disregards individual circumstances doesn’t give someone like me a chance to do my job,” said one employee who maintained a reduced-hour schedule for 23 years prior to the policy change. “I took my case to the EEOC, and I’m glad to know that United is going to stop its blanket policy on work hours.”

Michael Baldonado, an EEOC representative, agreed that decisions about disability accommodation must be made on a case by case basis. “A blanket policy that takes options off the table by setting minimum work hours not only violates the ADA,” Baldonado said, “it also may have a negative impact on the company’s morale, productivity and bottom line.”

With 52,000 employees worldwide and nearly 3,000 flights a day, United Airlines is one of the largest international carriers in the United States. united.com eeoc.gov

H&R BLOCK HAS TO PAY H&R Block Tax Services and its parent companies must pay $25,000 in damages and penalties because they failed to offer equal access to services for individuals who are deaf or hard of hearing at more than 11,000 owned-and-franchised offices nationwide, according to the US Justice Department.

The settlement resolves an ADA complaint filed by an individual who is deaf. It requires H&R Block to furnish appropriate auxiliary aids and services as necessary to afford a person who is deaf or hard of hearing equal access to the goods, services and accommodations made available to others who patronize the company.

“By signing this agreement, H&R Block has affirmed its commitment to providing effective communication with people who are deaf and hard of hearing not only at their tax-preparation offices in San Antonio, where the complaint originated, but at their locations across the country,” said Thomas E. Perez, an attorney for the Civil Rights Division. “The agreement will ensure that individuals who are deaf or hard of hearing have equal access to tax-preparation services.”

The settlement requires that H&R Block provide such auxiliary aids and services as qualified signlanguage interpreters when needed to ensure effective communication.

The company must also adopt and enforce a policy on effective communication with individuals who are deaf

or hard of hearing for all H&R Block offices nationwide, post the policy on the company website and in employee manuals, and distribute the policy to current and new employees and contractors.

H&R Block will pay $5,000 in damages to the individual who filed the ADA complaint, as well as a $20,000 civil penalty.

The ADA prohibits discrimination against customers with disabilities by businesses that serve the public.

These entities must provide equal access to customers who are deaf or hard of hearing, as well as to individuals who are blind or have low vision. hrblock.com usdoj.gov

SCHOOLS LEARN LESSON Nobel Learning Communities (NLC), which operates a nationwide network of more than 180 schools, has agreed to pay $215,000 to settle a discrimination lawsuit brought by the Justice Department. The complaint alleged that NLC violated the ADA by excluding children with disabilities from its programs. The children in question had autism spectrum disorder, Down syndrome, Attention Deficit Hyperactivity Disorder, and global developmental delays. NLC denied the allegations.

“It is illegal, under the ADA, to discriminate against children with disabilities,” said Thomas E. Perez, an attorney for the Civil Rights Divison. “Just like public schools, private schools must make reasonable modifications of policies to permit children with disabilities to participate fully in the programs they offer. This agreement ensures that children will not be denied quality preschool and other educational opportunities based upon their disabilities.”

NLC has adopted and will implement a formal policy to ensure it will operate its programs, facilities, and services in a non-discriminatory manner and in compliance with Title III of the ADA. The company will also publicize its disability non-discrimination policy to its principals, teachers, and other staff at all facilities within its network. Finally, it will post this information on its main website, as well as on its member schools’ websites.

The company operates under a variety of names, including Chesterbrook Academy, Merryhill School and Evergreen Academy. Its campuses, which range from preschool to high school, can be found in more than a dozen states around the country. nobellearning.com ada.gov

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director yells “Cut!” as his deaf actor continues to run up the street, the actor unaware the scene is over. This is a common occurrence on the set of of Hamill, a film for which members of the hearing and deaf worlds collaborated to create a project celebrating both.

“We wanted to make sure deaf culture was portrayed properly,” said Eben Kostbar, a writer and producer on the film he describes as “a classic sports underdog story, in which the lead character overcomes many challenges to reach his ultimate goal.”

After wrapping production shortly before last fall’s AFI Festival—where it won a $5,000 award—Hamill has picked up accolades at the Philly Cinefest, as well as at the Cleveland, Miami and Florida Film Festivals. At each screening, the film’s creators seek to keep the buzz revved up, as they close in on a coveted theatrical distri18

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bution deal that could give their film maximum exposure. Through it all, the filmmakers remain optimistic about Hamill ability to connect with viewers.

“The next several months should solidify it,” Kostbar said. “We want to make sure our efforts are done properly, not in a rush. We want to partner with a distribution company and see what this film can do for audiences at large: for deaf people, for hearing people, and for deaf education.”

The project is based on the life of Matt Hamill, a star wrestler for the Ultimate Fighting Championship (UFC) who grew up deaf in the 1970s, before deaf education was a well-established known. Raised, in part, by a grandfather who wanted him to be mainstreamed, Hamill hung with a hearing crowd, and learned to read lips. But when he attended college at Purdue University, the unfamiliar environment proved a poor fit for him socially.

Theodore Conley plays a young Matt Hamill in the biopic Hamill.

It was not until Hamill transferred to Rochester Institute of Technology (RIT), and made his way solidly into the deaf community, that he became more comfortable with himself and with getting involved in student activities.

His newfound willingness to participate—as well as a stint as a bouncer—prompted Hamill to try out for the wrestling team, where he emerged as a real contender.

“He was the first deaf person to actually win an NCAA wrestling championship, three years, back to back,” said Kostbar, who was drawn to the story after watching Hamill on The Ultimate Fighter, a reality TV show.

Though he trumpets the uniqueness of his project, Kostbar knows that deafness is not foreign to the feature film marketplace. Citing multiple influential films about the deaf community that have come before his own, Kostbar points to 1986’s Children of a Lesser God, for which deaf actress, Marlee Matlin, won an Academy Award. But Kostbar says that movie remains controversial in the deaf community because Matlin voiced everything she said, instead of using American Sign Language (ASL). Hamill, Kostbar points out, features a great deal of signing and is also captioned, allowing hearing and deaf audiences to enjoy the film together.

While researching Hamill, Kostbar attended one of the wrestler’s many speaking engagements. During one such event in Fremont, CA, Kostbar and co-writer Joe McKelheer stayed for the whole weekend, where the experience proved eye-opening.

“Before that, I had had very little exposure to deaf people and culture,” Kostbar said. We were at a K-12

school, and most of the faculty was deaf, all of the students were deaf, and we were encouraged to ‘turn off our voices, and try to sign for the weekend.’”

Their immersion in life without sound not only helped Kostbar and McKelheer better understand the world about which they were writing, it also helped them build trust with Hamill. Though Kostbar admits he’d originally thought, “here’s an opportunity to write and produce a vehicle for myself,” he soon realized his plan to play the role of Hamill didn’t feel quite right.

“As I went further along, and consulted with deaf people, I realized that [playing Matt] was not the way to go,” Kostbar said. “Deaf actors are not really given that many opportunities. I wanted this project to reach people, to inspire people, and so I realized I needed to step away from this role.”

Kostbar ultimately decided to take a lesser part in the film—that of Hamill’s assistant coach at RIT—so he could create an opportunity for a deaf actor to take the lead. Kostbar hired a deaf co-producer and set about coming up with fallback plans for circumstances in which walkie-talkies and yelling “Cut!”—standard operating procedures on a typical shoot—would fail to bring the desired results.

For much of the production, Kostbar avoided entering into a formal contract with Hamill, because he didn’t want the star athlete commited to the project until he was sure Hamill would be comfortable with the results. The men settled, instead, on a handshake agreement. Shortly thereafter, Kostbar and McKelheer set to work revising ABILITY 19

A rushing tide metaphorically captures Hamill’s feeling of confusion and isolation in Hamill.

the script, seeking to capture what Kostbar calls “the heart of the story” while showing passages to Hamill as they felt each was ready to be read.

Throughout the creative process, Kostbar and McKelheer traded responsibilities, back and forth: one writing new material, and the other trying to match it in tone and quality. The script went through 75 rewrites before its collaborators were satisfied. Finally, they held their collective breath as Hamill read the finished product.

Hamill, his friends, and his family were all pleased.

With the script complete, the team turned its focus to budgeting. They set the cost of making the film at somewhere south of $5 million, which left them with the unenviable task of searching for investments during a recession—a particularly challenging undertaking, as the project boasted no stars.

The film’s subject matter was also of little help: the premise of a deaf wrestler who learns to accept himself didn’t scream summer blockbuster. But the team remained resolute and hopeful, as Hamill’s star continued to rise in the UFC. Though, for three years, several prospective investors failed to back the project, Kostbar and McKelheer finally knocked on the right doors: those of the famed Farrelly Brothers (whose films There’s Something About Mary and Stuck on You have been praised and criticized for their humorous portrayals of disability), and of former football giant Jim Kelly of the Buffalo Bills. Investments from such high-profile names helped to make the bumpy road of filmmaking a little smoother.

Hamill even invested in the project himself, which came as little surprise to his collaborators. “He wanted to see the film get made,” Kostbar said. “He’s a humble, easygoing person. When he goes to signing events, and commits to be there a certain amount of time, he always stays longer.”

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On set, director Oren Kaplan faced an unusual set of challenges in bringing the film to life. Deaf actor Russell Harvard, who was cast in the role of Hamill, had never before wrestled, and needed to be taught the ins and outs of life in the ring. Multiple highly physical takes, along with the effort required to communicate with a hearing director, sometimes proved exhausting for the young lead.

Today, as they seek a theatrical release, the team behind Hamill has secured deals for video-on-demand, as well as DVD distribution. The filmmakers plan to tour their movie throughout deaf residential schools, (two of which are located in every state of the union) as well as on deaf cruises and at deaf expos. Hamill himself plans to attend many of these events, lending his star power to the marquee.

Though having begun his career as an actor, Kostbar continues to evolve as a writer-producer. Film Harvest, his production partnership with McKelheer, produced 2009’s Godspeed, which was awarded the jury prize at CineVegas Film Festival and is currently available on DVD and iTunes. The company is producing other films, as well, including Free Samples (a dramedy featuring Jesse Eisenberg of The Social Network) and The Thompsons, a vampire thriller.

In the process of pulling together Hamill, the filmmakers learned a film is not unlike a wrestler—sometimes it flipped them or pinned them to the mat. But by crafting the right script, getting a great cast, and reining in the actor who’s about to blitz into the next zip code, it ultimately proved possible to put the film in check.

by Pamela K. Johnson hamillthemovie.com

ABILITY 21

My discovery that drinking is el numero dos cause of oral cancer comes as beyond a shock. Why are bottles not covered in Surgeon General warnings? Okay, they are, but those warnings are usually about the dangers of drinking while pregnant. If a bottle of Captain Meyers had the warning, Drinking rum on a frequent basis can lead to having half your tongue removed and replaced with skin and fat from your wrist, believe me, I would have been all ears.

FIRST THINGS FIRST I meet with my surgeon, Dr Oh, who tells me my operation will take approximately 10 hours, including five hours to remove what I’ve got, and five hours to install what I’m getting. I will be sedated for some time, I’m told.

n the final days of 2010, Ran Michels, a retail store manager in Southern California, had half of his tongue removed. It was then reconstructed using skin and flesh from other parts of his body. The following is Michel’s journal of his battle against cancer and his experience with treatment.

A CRASH COURSE IN CANCER Like starting a new job, being diagnosed with cancer entails having to learn the lay of the land. It’s only been a couple of weeks since my diagnosis, so I’m no expert.

I do, however, gather more information every day. If you or someone you know was recently diagnosed with cancer, please feel free to benefit from my knowledge.

(Spoiler alert: if you drink alcohol, you might not like one of the lessons I had to learn).

Day one. Doctors grill me: “How did you get this growth?”, they ask me over and over again, trying to trick me into different answers. This question-andanswer process is not unlike those “surveys” you’re given when applying for a retail job—the surveys that peck away with such ridiculous questions as, “if your grandmother was shopping at an art store and put a tube of paint into her purse, would you say anything?”

When you have cancer of the tongue, doctors ask a bunch of different questions to find out how much you really smoke and/or drink, since alcohol is the number two cause of oral cancers. I don’t drink all that much, even though I make amazing booze balls! (I rarely eat them, though. I didn’t drop almost 90 pounds by scarfing down plates of pastries filled with tequila and cognac!)

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There is an old joke about the reason patients are called patients. I don’t remember the whole thing, but the point is that you must be patient while waiting for your doctor to get anything done. Or maybe the joke was about how long you had to wait for your doctor to even see you. Who among us hasn’t had the irritation of making a 9:30 doctor’s appointment, only to sit in the waiting room for 45 minutes to an hour?

On a typical doctor’s visit, a nurse moves me to the examination room, and on the way down the hall I notice three or four other patients, waiting. I briefly make eye contact with them, and they roll their eyes as if to warn me that I’ve now entered the real waiting room.

Another 45 minutes pass, and the nurse pops in to apologize and let me know the doctor will be with me “shortly.” I begin to wonder if the doctor is even in the building. I become irritable, and consider calling my job to let them know that I’ve been kidnapped by the medical profession. I expect that sort of call will be met with sympathy, because everyone in the world, including bosses, has been there and completely understands.

Finally there is a quiet rap on the exam room door, and my doctor appears, all cheery as if I haven’t been waiting more than two or three minutes. He asks why I’m there, listens to my lungs, and runs from the room with instructions to pick up a prescription from the nurse.

Time spent waiting: all morning. Time spent with doctor: five minutes.

But this is no typical doctor’s visit. If your five-minute encounter with the doctor reveals something “troublesome,” you won’t be waiting around doctor’s offices

anymore. You’ll be ushered right past the other jealous patients, who would in no way trade places with you if they knew the real reason for your VIP treatment. The doctor keeps his appointment times and spends as much time with you as needed, answering all of your questions. You suddenly find yourself longing for the days of sitting around the waiting room, bored and flipping through a mangled copy of Better Homes and Gardens.

I know time is of the essence when dealing with cancer, but it would be nice to have just a moment to take a breath and think. Now I don’t have the patience I developed over the years, waiting on doctors. Now I’m just a patient.

“THE BEST LAID PLANS...”

We all know this saying, and yet we go on, day-by-day, continuing to plan. My plan was called “Sexy by 50.” It started out based on something that my dear friend, Cynthia, once said: don’t allow yourself to turn 40 and not be sexy. Well 40 had come and gone, and I hadn’t heeded her advice. I found myself almost 45 years old, and 90 pounds overweight. I made a promise to myself that I would not turn the big 4-5 weighing the big 2-0-0.

Weight Watchers helped me shed the weight. Still, sexy managed to elude me. Sure, I was in the best shape of my life, but I just couldn’t manage to see myself as sexy. Being diagnosed with cancer didn’t help. There is nothing sexy about that! Having cancer and being sexy at the same time is just not doable.

The light at the end of the tunnel for me is this: I’m not yet 50, so I’m sticking to my plan to be cancer-free and sexy for my big day. Yes, I’ll have a couple of new scars, but scars can be sexy: just look at Joaquin Phoenix! For those with truly diverse tastes, I’ll have a cute, two-tone tongue. Hey, I’m going to make this work!

The reality is, sexy is a state of mind. I’m not there yet, but I get glimpses. I saw myself in a mirror at the theater last month and realized I looked damn good. I’d call that a step in the right direction. Years ago, while taking to my dad, I’d informed him that I had discovered I was masculine. “How’d you discover that?” he asked.

“I changed my definition of the word,” I had said. I was smart enough in my 20s to realize there were different types of masculinity, and now, in my late 40s, I realize there are different types of sexy. I’m going with it.

On Monday, when they remove the tumor—and the half of my tongue in which it’s embedded—I will no longer have cancer! Now that’s sexy! And survive cancer I will. So, in a couple of years, when you see this handsome guy with green eyes, spiky grey hair and a slim physique, you just might say: Damn, he’s sexy!

COLD FEET It’s just 18 hours until my surgery and, like many people facing a life-changing moment, I have cold feet. Actually,

I’m having a full-blown anxiety attack. Talk yourself off the ledge, I keep telling myself—and, little by little, it’s working. I have a wonderful care team. My partner, Ken, is amazing. I have a great surgeon, whom I’d Googled to check out. My friends and family are standing by, to provide whatever I need, whenever I need it.

So, really, what is the problem here?

It’s sort of like that nagging feeling you get when you’re driving to work and you begin to wonder if you’ve left the stove on—times 1,000!

This is my life we are talking about here, and I am facing a 10-hour surgery, during which half of my tongue will be removed and replaced with a flap of skin and fat from my wrist. Oddly enough, I’m not afraid of the surgery. I’m afraid of the anesthesia.

The symbolic “stove” I have left on represents the loose threads of my life. The possibility I could die tomorrow afternoon because some careless anesthesiologist is daydreaming about his date from last weekend freaks me out about all of the things I might have left unsaid.

I love to talk. If my mouth were a car, I would have a pile of tickets for cutting people off, driving over the speed limit, and running red lights. But I am faced now with the truth that there were many times when, instead of listening to what someone was saying to me, I concocted what I was going to say next to him. When I cut Ken off, which happens pretty much daily, he gets pissed and stops talking to me. But for some reason, that hasn’t really corrected my behavior.

If I consider my condition from a metaphysical standpoint, I think I have cancer of the “talking too much and listening too little” variety. What better way for the universe to force me to listen than to still my tongue for a while? Listening is a skill I plan to learn over the next several months, because not learning it could have serious consequences!

Every major event, no matter how difficult, has the potential to make you a better person. A cancer diagnosis is no different. I choose to keep my eyes and ears open, in the hope that I’ll learn whatever lessons are in store for me. I intend to use that information for its highest good and be transformed into my new, higher self.

Looking back, it is clear to me now that just calling to say “hi” to loved ones trumps all the calls I made to tell them I got a raise at work, or that I just bought a new car. The list of people I want to phone and tell how I feel about them grows and grows and grows, but my time to talk to them has run out. How will Ken ever know I have cherished every single second of our relationship, even when I wanted to kill him? How will Steve and Ruthie, Ken’s mom and dad, know they have become my parents too? How will my friends know how cool they all are? And how will my dad know I could have not asked for a better father?

ABILITY 23

WHAT THEY SAY, WHOEVER THEY ARE It’s post-surgery, and I’m typing this with a splint on one arm, since my arm is where doctors got the raw materials for my new tongue.

People refer to cancer as the “C” word. We say cancer is frightening. We drive past hospitals, only knowing what we’ve seen on Grey’s Anatomy. We live our lives in fear, not speaking the “C” word, lest we bring a pox upon our house. We give to cancer charities, we do walk-athons— and for what?

I hate to admit this, but I always thought about breast cancer as a little “lump” that you could just cut out.

What’s the big deal, right? Now I feel as if I have paid the high price for both my lack of compassion and my ignorance.

When the doctor first told me what I was facing, I wanted to say, “Get it out. Move.” That’s how I went into the treatment process: eager. Eager for the whole thing to be over. Today, I probably would have lingered, gone to a beach and cleansed myself in the Pacific. Gone to New Orleans for a quick beignet and a soothing stroll along the Mississippi River. There are about a thousand things I should have done, because in my ignorance I didn’t know the truth of what was about to happen. Here’s the real deal:

though I’ve come to understand that this is a luxury.

None of them spoke English as their first language, and all had heavy accents. (And there I was, with no tongue, unable to speak at all). By day two, I was allowed to sleep for two hours at a time, still plugging away at the morphine drip. After my dear friend Theresa paid a visit and turned into a black foam demon, I decided to get off the drugs. But now the pain is freaking me out.

TOUGH LOVE I stopped pushing the little button and requested to be taken off all morphine, altogether. The light started to shine through the corners of my drug haze. Nurses, who had hovered around me during my first 48 hours, were nowhere to be found once they’d removed the catheter. Regular suctioning of the tracheotomy that had been installed in my throat drummed up images I had vowed to forget during my mother’s last hours.

I couldn’t help but remember my mother’s helplessness, and the weakness and fear she had felt, when she was not able to breathe for even a couple of seconds. Finally, Lew, one of my nurses, informed me that I needed to get up and walk. My road to recovery was going to be walked by me alone. Lew let me know she was busy, and that I, too, needed to get busy healing myself. She also mentioned that when she had undergone a serious surgery, she had not taken painkillers but instead kept walking the halls until her release. This woman knows something about getting better!

When my partner, Ken, walked into the room, my first words of the day—all written down—were that I needed a walk. I was helped up, walked around a short while, and when I returned to the bed, I felt better than I had in days.

Walking therapy works! I vowed to myself to keep at it. I bugged all my friends who came to visit to walk me, as I had to be assisted. Yes, there was discomfort, but amazingly, no actual pain.

Doctors removed half of my tongue and replaced it with a graft, which is basically a tongue created out of other body parts. After surgery, I had two IVs. I remember the pain of coming back to consciousness. Hey, you’re hurting me. Why are you hurting me? I remember my bed being rolled around a maze of walls and into an elevator. The volume of the ride was cranked up by the hallucinogenic effects of the morphine. (They need to come up with some pain medications that don’t have that effect.) This was a doubly bad trip.

Each new corner was a new entity, and sometimes a demonic one. Finally, in my room, there was no sleep to be had. People prodded me constantly, checking various items on their hourly schedules. I was given a morphine pump that my nurse called “my new best friend.” I was told I could push the button every ten minutes for liquid relief. I watched the clock, which seemed frozen in time. Though I pressed the pump, relief never arrived.

For the first two days, the nurses were completely mine, 24

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On my fourth night in the hospital, I was placed in my own room, just down the hall from the intensive care unit.

The nurses in my new room ran the gamut from sweet to simply a warm body in a uniform. I actually preferred the “bare minimum” nurses: they ignored the order for assisted walks and let me walk on my own. I figured that there were wheelchairs just around each corner, and that I could always have a seat if I ran out of breath.

My rude awakening came when I failed to remember that I was on a liquid diet—nutrients were provided through a feeding tube in my nose—and during one of the walks, started to feel warm drops down the backs of my legs. I sheepishly wound my way back to my room, hoping I wasn’t leaving a trail, and called for the nurse, who was none too pleased. I remember that sponge bath particularly well.

The next day came as a shock: I felt like crap. What?

How was this possible? I’d been walking! On the road

to recovery, some potholes suddenly appeared, and I was in the dumps.

Maybe it was a result of staff morale, or the fact that I’d just finished the best book that I’d read in years, The Coffee Shop Chronicles of New Orleans, by David Lummis, and was suffering from post-goodbook depression. (You know that final page is coming soon, and then BAM! it’s over.) Ken had come by and had already left, and I was suddenly realizing just how long the road back to health might take to travel. This recovery wasn’t going to be a matter of days, but months, and I felt drained. Then Dr. Oh came in. “You’re doing well,” he told me. “I’m going to release you tomorrow!”

What? I still felt like such crap! Still, I was happy to be heading home.

This is going to be the best year of your life so far, I thought. As you heal, you’ll really get to see what you’re made of.

I already knew I was being challenged in a way I had never been before. By necessity, I would now begin walking a very different path. I could choose to become more healthy than I’d ever been before, and to learn to love like never before. I witnessed the light in the eyes of the friends and family who were brave enough to take this journey with me, and I felt blessed.

GOOD JEANS AND GREAT GENES

want to look your best. I spent years rejecting jeans, but just last year I bought a pair I love and rarely take them off. They have a sleek, dark wash that you can dress up or down. The denim market has exploded over the past 20 years. My favorite jeans do not have a fancy pedigree. They only cost $35, and are your basic Levi’s, the American classic.

First, an update: I saw the doctor yesterday and found out the surgeons removed all the cancer from my tongue!

Unfortunately, on a microscopic level, it has spread to my lymph nodes on the right side of my neck. In a few weeks, I will need to undergo radiation and, most likely, chemotherapy. I am disappointed, of course, but know I have the strength to get through this. I didn’t feel this strong when I first heard my diagnosis in the doctor’s office, but after not being able to sleep for hours, I remembered the truth about myself: I am tough!

Good jeans don’t become a part of you—they are you. So you try to choose well. Good genes (or, what you hope are good genes) are handed down to you. You don’t get to choose them. Some people are sleek, some are tall. Some people are a bit big-busted, some get a big tush. Some people’s genes have a lineage of cancer. My genes, much like the denim I wear, seem to be of a simple lot. German farmer stock, Irish and Cherokee Indian, all of which make me the unique expression that I am.

My healing is happening at an amazing pace, which has surprised even my doctor. My breathing tube was removed today, as was my feeding tube. I even got to take a shower, after some creative plastic wrapping was done for the casts on my arm and leg.

I don’t know why, but today I am thankful for jeans.

There’s nothing like a good pair. The best jeans become a part of you and define you. You drag them out whenever you’re down, or whenever you’re up, because you

Like most of the men in my family, and like my favorite jeans, I have become better over time. My weight has bounced around, all of my life, but seems to have found a nice range. My face has mellowed and has actually become handsome over the years. My brown hair now has a touch of gray that gives me, if not a wiser look, then a slightly more mature one, and God only knows, I could use the maturity. Also, like my favorite jeans, I am durable! Made to survive all the wear and tear the universe can dish out.

ABILITY 25

MY PILLARS Today I wandered onto the Oral Cancer Foundations website. A lot of great info is available there, until you read the mortality rates: 27,000 people are diagnosed with some sort of oral cancer each year, and only half of those are alive at the end of five years (the most important milestone for cancer survivors). Those are pretty heavy odds, you might be thinking. The numbers made me mad. Screw you, I thought.

But then I wondered, is this a form of denial? Faith? Am I crazy? It’s at times like these that I am truly grateful to be the poster child for attention deficit disorder (ADD).

In a day or so, I won’t really remember the statistics and will again be focused on my recovery. I prefer to focus on the personal pillars of my health. These include: Faith: Get those prayers going. Faith makes us healthy even before any of us can see the physical proof and is one of the strongest medicines in the universe. Faith is our connection to God. It allows us to see the world removed from its physical bonds. It tells us that we are one with God. Yes, I know all of the arguments against it: Faith is for the weak. Prayer doesn’t work. I pray to win the lottery every week, and I’m still working at a 95 job, blah, blah, blah. I think of wishes as prayers, and over the years, lots of mine have been answered—especially when I backed them with action.

Fantasy: Fantasy is my ability to envision a future. Fantasy works hand in hand with faith. It helps me imagine better tomorrows: a world without cancer, a life filled with happiness. Fantasizing helps me pass time I could have spent worrying in a more pleasurable, uplifting way. I can’t tell you how many times I’ve been interviewed by Oprah or Ellen on my way to work! Thank God for hands-free phones, because people no longer freak out when they see someone talking to himself in the car anymore.

Attention Deficit Disorder: My ADD helps me quickly dust my hands of any negative information I’ve been given. It allows me to let faith and fantasy take their rightful place, so I can put my energy into my healing.

Maybe my outlook is simplistic and I’m failing to take statistics into account, but I say there’s no way I won’t be here in five years. I have faith in the future, and you’d better believe I’ll be around to live it out!

“IF IT’S NOT ONE THING, IT’S ANOTHER” I love that line. It never fails to make me think of Gildna Radner and one of my favorite Saturday Night Live characters, Rosanne Rosanna Danna. Roseanne’s words are appropriate for my cancer battle: when you’re in the process of healing, it’s never just “one thing!”

At the start of this journey, the tumor on my tongue was the cause of my pain. Then, my big concern was the fact I had to take time off from work. Then, my focus was on trying to figure out who I was when I wasn’t working, 26

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since work was always a big part of my identity. Then, my focus switched to my surgery and preparations for that. By the time I was in pre-op, I’d forgotten all about the tumor, because I was about to have my neck sliced open wide enough for someone’s hands to reach into my mouth!

Post-surgery, I began waking up to morphine-induced hallucinations. These took up a lot of time of their own.

The feeding tube was a beast, right from the start. It was sewn into my nose, causing me nightmares of being dragged along by a huge hook. Then, my concern switched to my trachea tube, which always needed suction as my immune system worked to get it out of my body. Then, there was the war of the nurses: the hovering nurses who would not let me sleep, and the nurses who wouldn’t come even when I called them.

Once my trach and feeding tube were finally removed, my focus turned to my cast. Today that’s the thing that’s bugging me, along with residue from the trachea tube removal. It turns out that doctors don’t bother to stitch up the incision, they just let the skin grow back together on its own, somewhere down the road. Until it does, I guess I have a “blow hole.”

I have to admit that my “If it’s not one thing, it’s another” philosophy started long before the cancer. Always restless, never satisfied, I was one of those people who believed they appreciated beauty, while, in fact, I was missing it all around me. How amazing the sun feels on the back of my neck after I’ve being cooped up for so long. How cute my dogs are, curled up on my legs while I type. Before my diagnosis, I scarcely noticed the dappled light of the huge tree in our front yard. I failed to recognize how amazing the body is.

From here on out, it’s up to me not only to seek out beauty in the moment, but to rejoice in that moment. And though I love to bitch and complain at the end of a long day, it recently hit me: how amazing would it be if I felt peaceful at the end of a long day, instead?

“MAMA SAID THAT THERE’D BE DAYS LIKE THIS...”

One of the risks of undegoing my surgery was the possibility that a nerve controlling muscle movement in my face may be severed. It could distort your smile, my doctor warned.

So after my surgery, I checked to see how my lip was moving, and decided that all was fine. However, in the weeks that followed, I came to realize I had no feeling from approximately the bottom of my ear to just before the right side of my chin. My doctors say this could be:

a. permanent b. temporary swelling that blocked the nerve, subsiding over time c. unlikely to heal for years, as the nerves work to rewire themselves and restore feeling to my face This morning, while brushing my teeth, I realized that even though my lower lip has most of its mobility, I can no longer form an “O” with my mouth. My lower lip will go up but not down. Great. I’m going to have a lopsided smile. Ran, calm down, I told myself. Think about the people who have it so much worse than you. Think about the guy you always see when you go to the radiologist who had both legs amputated. I bet he would be more than happy to trade places with you.

My shallow side has got me wondering: would other people, faced with adversity, willingly change places with someone else if it meant giving up what they had learned? Would Steven Hawking trade places with a hot guy who has a 75 IQ, just to get laid? And is it shallow of me to want the smile I was born with?

WHEN THE FEAR CREEPS IN Those of us intent on surviving cancer often put a brave face forward. For some, this is a “ fake it till you make it” strategy. For others, they know that’ll be okay eventually. Survivors know that their hope and faith keep them alive. Cancer treatment can be brutal, but you must walk forward to your treatment room as if it’s nothing important. Killing cells. Fusing tissue. It’s nothing. We can handle it. We are survivors—until the fear creeps in.

There is virtually no human body made to withstand the effects of radiation. Treatments such as acupuncture can help alleviate the side effects, but my acupuncturist has told me she’s never seen anyone go through radiation without some ill effects.

I have another 18 days of treatments yet to undergo, with another round of chemo scheduled to boost the radiation. Fear has crept in. I know I will survive this— but do I really want to?

My answer is yes. Pain is a small price to pay for love and for life. In a year I will remember the treatments and the blisters, but I will not remember the level of pain I experience now. I will remember the people who stood by me, each sending me energy to get through this. Friends who force me to eat, even when the experience hurts so much I want to throw the bowl of soup across the room.

Love is what I will remember and take from this experience. The pain will be a distant memory. Of course that is then, and this is now. Right now I am in the worst pain of this entire process. Yet I still have to eat, exercise and meditate to keep my strength up, even though I don’t feel like it. And I need to talk. The part of our minds that tells us that we will be okay, that we will survive this is the same part of our mind that allows us to rise above

the pain. In spite of my pain, I continue to be grateful. I am surviving. In less than four weeks, the treatments will come to an end.

OH, THE PAIN OF IT ALL! Just three more sessions to go. I’m so burnt I can barely move my head. My tongue is so swollen that I can hardly speak. Sores in my mouth prevent me from drinking water without a great deal of prep. I haven’t taken a painkiller during this entire experience and now I find myself wanting something strong! I feel pitiful and weak and it sucks.

Today, I understand why doctors don’t tell you everything the treatment process entails. Who in their right mind would allow themselves to be tormented? If I could do this all over again, there is no way I would agree to radiation. I would rather follow a careful diet and work for the best result possible. But ask me again, in five years—when I am cancer free—if this was worth it, and I may sing a different song.

LET THE LIGHT IN Two weeks ago, I finished my chemotherapy and radiation, and announced to the world that I was cancer free, and ready to start healing. Afterwards, I slept for almost three days. Ken woke me up for meals, and then let me go back to sleep. I felt as if someone had siphoned my tank in the middle of the night and left me with nothing.

I continue to heal more every day. I’ve watched every day as the skin on my donor tongue sheds and reveals new skin, and swelling reduced. By Friday of last week I was starting to speak without pain, although there is much speech therapy in my future.

When God closes a door he opens a window, but lately I’ve kept my drapes drawn. I feel stuck. I want to make changes to my life in order to live happily, but feel pressure to rejoin the world. I look forward to going back to work, but will never seek my identity through my occupation again. A job is merely a means to make a living. I want to start a more disciplined spiritual practice.

Recently, while sitting in my support group, I realized that I’m not special because I got cancer. I’m just one of millions who’ve had to face it. So here I am—grateful that I don’t have to do this on my own. I have so many amazing people around me to cheer me on. Some are survivors and some are just amazing people who inspire me every day. I am also grateful for Ken and for all of my family, who have made this journey as easy as it could possibly be. Now on to my first prescription for healing myself: open the drapes, and let the light in!

Ran Michels oralcancerfoundation.org ABILITY 27

t also became clear several of the US sprinters had been doing some hard work. This was most evident in the cases of Tatyana McFadden and Jerome Singleton. McFadden dominated the running events, winning four gold medals and a bronze, while Singleton came back to the United States as the fastest amputee in his class after upending “Blade Runner” Oscar Pistorius for the 100-meter (100m) title. Now the focus shifts to London, site of the 2012 Paralympic Games. The fact that the games are more than a year away has done nothing to slow the training of these world-class athletes.

THE FASTEST MAN Jerome Singleton doesn't have to wear long tights any more, or pants to cover up his legs. Why should he? It would only slow his time.

Singleton became the fastest amputee sprinter in the world when he beat Oscar Pistorius in the 100m (T44) at the IPC Athletics World Championships, back in January. Singleton and Pistorius have been rivals since 2008, when they began competing against each other on the track. Pistorius had always gotten the better of 28

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Singleton, and with that success came Pistorius’s fame.

It was Pistorius who was dubbed “Blade Runner,” due to his cheetah-running style, which is commonplace among sprinters.

Pistorius also gained fame when he fought for the right to compete in the 2008 Olympic Games, but failed to qualify for South Africa's Olympic team. As Pistorius faced these struggles, Singleton kept getting better, losing to Pistorius by just .03 seconds in the 100m at the 2008 Beijing Paralympics.

Finally, in January, Singleton edged out his archrival to win the 100m and claim the gold. Singleton got out to the better start, but Pistorius secured a comeback, drawing even with Singleton as the two speedsters came to the line at identical times of 11.34. Singleton's lean forward was enough for victory as he went tumbling onto the track's surface, sending Pistorius home defeated for the first time since the 2004 Athens Paralympic Games.

“It finally solidified the rivalry,” Singleton said. “Oscar and I have been calling it a rivalry since 2008, but I've never won. So you can't call it a rivalry until you beat the other person.”

Though claiming the title of “fastest man” is quite an accomplishment, Singleton—who has only been competing internationally at this level since 2006—maintains a drive to keep winning.

accomplishments had been on a walking-prosthetic leg.

It wasn't until 2006 that Singleton discovered adaptive sports. Almost instantly, he knew he wanted to be a part of that experience.

Singleton, who has competed in sports all of his life, was born without a fibula in his right leg and became an amputee at 18 months old. Nevertheless, he followed his older sister's footsteps on the track, running high hurdles in middle school and high school. He also played basketball and football, and was one of South Carolina's top 100 senior football prospects during his senior season. Most of his competition didn't know he was missing a leg.

Singleton began competing on the track, though his priorities remained academic. He graduated from Morehouse and attended graduate school at the University of Michigan, where he studied industrial engineering while training with the track and field team.

There he discovered that balancing athletic competition with schoolwork was difficult but manageable.

“I was a little self-conscious before I met everyone else with physical disabilities,” Singleton said. “When I tried out for the basketball team, I wore sweatpants. Whenever I went to a track meet, I wore long tights. People didn't know I had an artificial limb, the majority of the time.”

Singleton’s physical differences didn't seem to matter.

As a young man, he found success not only on the track, but also on the football field. After making a switch from runningback to strong safety, he went on to play college football at Morehouse, thanks in part to a full-academic scholarship. While there, he double majored in mathematics and applied physics.

Singleton’s interest in the physics lab, as well as his personal accomplishments, led him to researching prosthetic running legs. Up until that point, all of his athletic

“With athletics, anything can happen,” Singleton said.

“I might wake up one day and not be able to compete anymore, but my mind is still there. I'm not going to defeat myself. I'm going to work. I've been given these opportunities because of athletics, but the first time I left the country was because of academics, with an internship in Geneva, Switzerland.”

True to his interest in scholarship, Singleton completed his graduate degree before training his focus solely on the track. After graduation, Singleton competed in January's IPC Athletics World Championships, where he stunned the sprinting world with his victory.

“It's a great feeling to know I'm the fastest amputee in the world,” Singleton said. “But I also recognize that for an amputee or any person with a disability to come out and compete and push himself to go further is monumental, in itself. I'm thankful.”

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Singleton is still pushing. He won silver at the IPC event, in the 200m, and has his eyes on the world record time in that event. He and three other US members won bronze in the 4x100m relay. The January event was outside of the prime time for achieving the fastest time during outdoor season—so Singleton’s goal now is simply to get faster. He has his eye on US sprinter Marlon Shirley’s world record in the 100m for Paralympic sprinting: 10.97.

McFadden said. “It's a different type of mental strategy.

It helps me keep up my endurance, as well.”

“When I come into London, I want to do so well that there's a void between me and the next person and you can't compare us,” Singleton said. “That's what I want in track and field.”

McFadden then was placed in an orphanage that could not afford the wheelchair needed to improve her mobility. Until the age of six, she transported herself by “scooting,” or using her hands as her legs.

That's just like Singleton, striving for more.

At age six, McFadden was brought to the United States and had to learn not only English, but also new ways to manage the sudden accessibility of resources like physical therapy and a wheelchair. McFadden's “ya sama” catchphrase—which means “I myself” in Russian— became a mantra that drove her to independence and success.

PRACTICE MAKES PERFECT Tatyana McFadden describes the IPC Athletics World Championships as “like another practice.” If that's the case, her competition mode must be surreal.

McFadden came away from the World Championships with four gold medals in the 200m, 400m, 800m and 1500m, and won a bronze in the 100m to go five for five in her trip to Christchurch, New Zealand. Not bad for a “practice.”

“World was a great, great championship for me,” McFadden said. “It’s a huge event, but it helped me relax more. It helped me figure out what I needed to do for London.”

Reaching the goal of competing in London has demanded some unique training from McFadden. When she entered college at the University of Illinois and began competing on the university's adapted varsity athletics track team, marathon competition was mandatory for all track athletes. A marathon? For a sprinter?

“I thought, you've got to be kidding me,” McFadden said. “I’m a sprinter and I can't do this. I don't know how I'm going to prepare for this.”

She figured it out.

First up was the 2009 Chicago Marathon’s wheelchair division. Here McFadden focused on building endurance for her middle-distance events. She ended up winning the marathon.

During the training season prior to this year's World Championships, McFadden again competed in the Chicago Marathon again and finished third. Then, a month later, she won the New York City Marathon’s wheelchair division. Now the notion of a sprinter running marathons seems a little less crazy.

“I thank my coach for steering me in that direction,” 30

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McFadden is known in the racing world for her upperbody strength, something which has taken both diligence and time to develop. Born in Russia with spina bifida, McFadden needed a crucial surgery that was held up for 21 days. It was a surgery she wasn’t expected to survive.

“Something about sports just gave me that competitive drive,” McFadden said. “I just want to be the best.

Looking into my past, things were very difficult. I know that things I face now are probably not as difficult as things I faced before. So I think competition only makes me stronger.”

McFadden's strength continues to grow, as evidenced by her progression in the lead up to London. At the 2004 Paralympic Games, when she was just 15 years old, McFadden won the silver medal in the 100m (T54) and bronze in the 200m. Four years later, in Beijing, she won three silver medals (200m, 400m, 800m) and a bronze (4x100m relay). Then came her marathon victories, followed by her five medals at the World Championships. With this string of successes, McFadden simultaneously scored a victory for the rights of people with disabilities, and has successfully lobbied for Maryland public schools to allow students with disabilities to participate in sports.

The medals McFadden wins—and the message she sends—has her marching toward London 2012, carrying the US flag. But she knows it won't be a smooth road.

When McFadden took to the blocks in the 100m at the World Championships as a heavy underdog, she saw some familiar faces mixed in with the new ones. This, she understood, was a sign that practice won't stop between now and next summer.

“I know I have to work even harder every day because each day I train I'm going to get better, but each day they train they're going to get better,” McFadden said.

“Now I'm working toward London. Everything I do— World Championships, marathons and sprinting—it all helps me prepare for London.”

by Josh Pate paralympic.org

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On Christmas Eve of 2007, I arrived in Los Angeles with my husband and our baby son. We had come from Sydney, Australia, with plans to spend six months in the United States. On behalf of St. Lucy’s School in Sydney, I was to spend my maternity leave researching schools and programs that served individuals with disabilities in the United States.

a studio adapted to meet the sensory preferences of students with autism spectrum disorder (ASD). Dr. Ron Cohen, the president and chief executive officer of UCPLA, invited me learn more about the organization’s programs for children. After having worked with children in Australia for 10 years, I was excited to see the work being done by others.

I could never have imagined how this undertaking would change our lives. I could never have known that it would lead me to my dream job: designing a program that would reflect everything I believe to be true about the best way to educate young children. Let me tell you how this came to be.

I had begun my career as an actress, primarily working in children’s theatre. I’ve always felt that the imagination and creativity of a child are wonderful things to share. I enjoy enchanted worlds and find it easy to inhabit them. Eventually I was drawn into theatre education and was amazed by the effect of theatre on all children. I was intrigued, in particular, by the responsiveness of children with disabilities. The purity and depth of their reactions were fascinating to me.

One of the first places I contacted after arriving in Los Angeles was United Cerebral Palsy (UCP). Earlier in the year, the UCP branch in New York City had arranged for me to teach dance and theatre workshops for adults with cerebral palsy. I loved the experience of working with adults—the group of students was fantastic and everyone was open, responsive to music, and willing to play within different theatre forms. I was hoping to work with adults again.

UCP of Los Angeles (UCPLA) offered a number of programs for adults and children, including ballet classes in 32

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Eager to understand more about the influence of theatre on children with disabilities, I began to work in special day classes in Australia as a drama teacher, studied for my master’s degree, and ended up an artist-inresidence at a private school for children with special needs. Immersion in the creative arts played a central role in this school’s curriculum and in the foundation of its educational philosophy. I founded the school’s children’s theatre group and even secured it a venue at

Artistic instructor Olivia Karaolis engages young students at a UCPlay session.

the Ensemble Theatre, one of Sydney’s major theatre companies.

But imagine my surprise when I discovered that in Los Angeles, the home of Hollywood, many children with ASD and other developmental disabilities have limited (if any) access to an in-depth arts education. To their credit, educators in the States seemed beautifully versed in structured teaching strategies and in applied behavior analysis. Individual Educational Plans (IEP) are clearly used more effectively in this country than I had ever observed in Australia. But where was the time to play, to make things and to have fun?

UCP offered me an opportunity to address this problem by allowing me to pilot a program that would give children in special day classes the same in-depth arts education as was received by their peers. My official involvement in this effort began in 2008, as I started to design the program. My approach was based on the conviction that true learning can only happen through experience.

That is, to truly experience something you need to be exposed to it in a multitude of ways.

The creative arts offer endless learning experiences and opportunities for individuals to make connections. The

curriculum I engineered met the California State Board of Education content standards for theatre and, in addition, used the arts to target development of social, behavioral and communication skills. In essence, it drew on individual strengths and placed each person at the center of his or her own learning. The curriculum was given the name “UCPlay”.

UCPlay was piloted at Walgrove Elementary School in Los Angeles. The selection of this school was done in collaboration with the autism support unit at Los Angeles Unified School District. The district representatives were supportive and enthusiastic and the teachers were interested and excited. We were off to a good start.

After eight weeks using drama and puppetry to teach the students about friendship, the class’s teacher began to notice many students generalizing these skills on the playground. The children spoke more and engaged more in drama than in any other group activity. As the UCPlay program’s first students, the children at Walgrove Elementary held a special place in our hearts. We decided to celebrate their engagement in our program by having them create the UCPlay logo.

It didn’t take long before word of UCPlay spread ABILITY 33

Karaolis leads students in an expressive group activity.

throughout the city. In no time at all we found ourselves in a number of urban schools, including Wilton Place Elementary in Koreatown. At this school I met an extraordinary young man with autism whose most powerful method of communication is illustration. We helped him to use this gift as a tool for learning across all subject areas.

Tom Whaley, Head of Theatre and Performing Arts for the Santa Monica-Malibu Unified School District, brought UCPlay to the students of his district and provided them with evidence that the creative arts can give people a voice, an opportunity for collaborative learning, and a place to enjoy interaction with others. For many special needs students, schooling is dictated by following the student’s IEP, as guided by a therapist.

But UCPlay is unique in that it allows a new approach to learning. As one student shared, “UCPlay is the first drama program that takes my needs into consideration without talking down to me. I am always a teenage boy, not a baby, to them.”

Testimonials like this speak of the importance of the arts in any student’s ability to learn. Time and again, kids greet each session with excitement. The classroom teacher feels encouraged by the sound of an entire class’s laughter, as well as by the decision of students who typically withdraw from social contact to engage.

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UCPlay means the world to me, largely because of the students and wonderful people who have helped UCPLA not only continue the program, but—even in the middle of huge funding cuts—expand it! Several teachers have made large personal donations to help fuel our efforts. Parents, with the help of organizations like The Santa Monica Education Foundation and the Malibu Special Education Foundation, have raised thousands of dollars to help UCP fund the UCPlay program for their kids.

Even the clothing outlet Anthroplogie donated ornaments to be used in puppetry (after carefully removing any glass from every item). Students from the community have selflessly volunteered their their time and their talents to support the program and, in the process, have learned about the experiences of individuals who perceive the world differently than themselves.

Through UCPlay, we have come together to give students a place to be heard. We continue to play an active role in student education and to help reveal, to themselves and to others, who these students can be. Being in their presence in one of my greatest joys. ucpla.org

by Olivia Karaolis

“

ction breeds knowledge,” said Paul Mumba, an inclusive education consultant specializing in the policy regimen of Zambia. Last fall, his signature declaration served as the nucleus for Building Capacity for Inclusion in Africa, a 15-day expedition spearheaded by Mobility International USA (MIUSA).

According to Mumba, many parents and educators throughout Zambia believe children with disabilities have neither the ability nor the right to receive a public education. This social stigma perpetuates barriers throughout the region—barriers that are particularly damaging to the nation’s youth.

While a number of activists are leading the charge for grassroots social change in Zambia, no legislation is being enacted to curb discrimination against this disenfranchised group, and most Zambians remain unfamiliar with the severity of the problem.

To tear down barriers for Zambians with disabilities, members of the National Youth Leadership Network joined forces with the Children in Need Network (CHIN), which served as our host organization in the region. Our group included Lou Enge, MIUSA Project Specialist for International Development and Disability, Linda Shepard, CEO of Parents Educating Parents and Professionals, and myself.

Composed of a range of non-governmental, communitybased, and faith-based organizatons, CHIN provides a variety of services, from educational to nutritional program support, to child-abuse prevention services, to skills training. As part of our collaboration, CHIN

sought technical assistance and information on how to make its facilities, programs, and services more accessible to the public. Staff members requested education and training to correct the misconception that a medical background is necessary to respond to needs of people with disabilities. They were also given models of programs and services that include and empower people with disabilities.

Additionally, parents were provided the supports and resources necessary to convene as an emerging social body, and young people with and without disabilities were brought together as an inclusive social force.

Finally, professionals and allies assembled to draft policy-change recommendations for CHIN, and for cadres of the Zambian Ministry of Education.

The primary intention of our efforts was to support a quest for social change on policy and organizational levels throughout Zambia. But as a biproduct of this process, we found we were also directly impacting individual lives. The following are some highlights from our itinerary:

DAY ONE: We explore the concept of inclusive education in Zambia. To date, children with disabilities are virtually excluded from classrooms. Mumba, our co-facilitator from Zambia, shares his belief that all children are entitled to an equal education:”We call our children disabled without taking the time to understand what they need in order to learn,” he says.

“We are the ones who need to learn so we can really serve the child. The children bear the brunt of the feeling of failure when, in reality, the children don’t fail—the teachers fail.”

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DAY ELEVEN: We assist children in undergoing evaluation for disability supports and assistive devices.

Resources for such devices are different from those to which we are accustomed in the United States: supportive equipment is made with basic wood and cardboard materials, and some wheelchairs are made with recycled bike tires. It is wonderful to watch children be fitted for such supports for the first time. They visibly transform in a matter of moments, each suddenly experiencing the feeling of full independence.

DAY THREE: We continue visiting schools in very small sub-communities outside of Lusaka, Zambia’s capital. We learn that, only months ago, the headmaster of a school stoned a mother because she sought enrollment for her son with albinism. The headmaster said he was offended the woman would even make such a request. In the end, the mother, who by this point was experiencing seizures and intense headaches, was charged with a social offense, while the headmaster received no charge against him. It was the woman’s sixth attempt to find a school for her son.

DAY SIX: We bring parents—some of whom lead non-profit organizations, and some of whom are interacting with each other for the first time—together with other parents of children with disabilities. Topics include the availability of public resources, as well as efforts to break stereotypes. Mothers speak of how some children with disabilities spend their lives living in the corners of rooms, seldom if ever going out into the community, because of the risk to the child and the family.

DAY SEVEN: We visit a Zambian school at which a community event is held. Organizational leaders and political representatives unite to exchange information and learn about new concepts of disability that are rooted in personal pride, rather than in medical reference. While formal communications are rewarding, hugs and handshakes at the end of the day exemplify real progress. A passion for change is powerfully present among these individuals. It is as though we have rewound the clocks to the years preceding the disability rights movement in the States. Change has not yet arrived, but the ideas and the motivation are plentiful.

DAYS EIGHT AND NINE: A two-day policy development venture breeds success. Representatives of various venues draft CHIN’s first policy on inclusion. In a total of eight hours, approximately 30 people devise a policy proposal to implement full inclusion within the organization. The group plans to propose this policy addition to other organizations and to representatives of Zambian ministries.

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DAY THIRTEEN: Youth power! Teenagers with and without disabilities come together to talk about a world of inclusion for young people. Conversations focus on radio shows and peer support at school, and anti-bullying skits and songs about pride express the priorities of the youth. These young leaders are evidently visionary thinkers who speak of ways to break down social exclusion, not merely by theory, but by practice.

DAY SIXTEEN: A day centered on the importance of community. In such a short period, we’ve come to establish alliances with individuals who experience struggles similar to those of us on the other side of the world. The feelings of partnership and connection are strong. It is an amazing confirmation that individuals are at the heart of social change and community building. Individuals who, only 10 days ago, heard about disability pride for the first time, are now practicing it. Those who understand the concept of social struggle can collaborate to create positive power.

DAY NINETEEN: Our final day of meetings is accompanied by the stinging sense of separation at this visit’s conclusion. My “home country” gives me so many rights and so many opportunities that my new brothers and sisters of Zambia also deserve. Why is it that I should be so lucky while they still battle oppression? I pause for a moment to capture the image of the local school in which I stand, when a mother puts her hand on my shoulder. “Thank you,” she whispers. Our eyes meet and we look at one another with a calm silence. “Thank you,” I reply. We smile, and she walks away.

As Mumba taught us at the beginning of this experience, “Action breeds knowledge.” The actions exhibited throughout this journey are symbolic, preliminary steps to many more that need to take place if a fully inclusive international community is to be created.

THE TEAM DR. SICHAMBA CHARLES, NATIONAL BOARD SECRETARY, CHILDREN IN NEED NETWORK (CHIN): “We have contributed to policy making in this country with great strides. CHIN has a position in our government to contribute to policy change, and we have been challenged with policy development. But the efforts through this program will allow for the creation of a policy that will surely be adopted

Betsy and Paul Mumba

Yvonne Zimba

Biswell Mwenya

Dr. Sichamba Charles

Linda and Lou

Pastor Stephen C. Bwalya

Astrida Mwila Kumda

with no objection. I envision that, one year from now, this policy will be circulated within the Zambian Ministry of Education with particular attention given to children with disabilities. It will serve as a way for all people to see the importance of such inclusive measures.”

PASTOR STEPHEN C. BWALYA, DIR., WONS MINISTRIES INTERNATIONAL: “So many people [with disabilities] are relying on individuals from many social realms to come together on their behalf. This is important because, while I appreciate the efforts of these professionals, many of the people with disabilities in our country have been left out. Now we are coming together—people with disabilities and people without— to equally represent our community. So many people will benefit from these humbling efforts.”

REV. AARON J. CHILUNJIKA, DIR., CHISOMO DROP-IN CENTER, FULL PROOF MISSION: “There is growing knowledge in our community around disability needs, and we have a growing understanding of what services we need to best support all youth in our community. We have lots of work before us, but I have a vision that these efforts will move from paper to community reality. It will take commitment, unity and financial resources. All of these things are available. We just need to use our experiences to bring them together.”

PAUL MUMBA, SCHOOL IN-SERVICE COORDINATOR, INDEPENDENT INTERNATIONAL EDUCATION CONSULTANT: “Working with these individuals has added value to the whole concept of inclusive education in [Zambia]. Whether the results will be seen in rural schools or national government, it is invigorating to see how truly inclusive community services could work. Looking forward, I see this to be an example of real progress.

ROSEMARY M. MWEWA, EXECUTIVE DIRECTOR, CEREBRAL PALSY ASSOCIATION OF ZAMBIA: “One of our biggest challenges is the incapacitation of people with disabilities brought about by the general society, not by people with disabilities themselves. We need additional resources for community involvement, family support, respite care, and transportation. People must accept that disability comes into anyone’s life at any time. Disability associates itself with any family of any economic status.”

Reverend Aaron J. Chilunjika

Rosemary M. Mwewa

ASTRIDA MWILA KUMDA, PROJECT COORDINATOR, ZAMBIA ASSOCIATION OF PARENTS FOR CHILDREN WITH DISABILITIES: “As a mother of a child with disabilities, my aim is to change the way community thinks about disability. My child has the same rights of any other child; my 11-year-old son deserves the same respect. Children may not always be able to speak for themselves, in the traditional sense, but that is when it becomes our responsibility to speak on their behalf, and I am doing that for my child and for other children of Zambia.”

BISWELL MWENYA, STAFF OFFICER, ZAMBIA MINISTRY OF HEALTH: “Too often people with disabilities are forbidden from participating in society. We may say that policies are essential, but they are no good without actions. We must work together to achieve this greater end. For anything to be implemented, there must be hard work, and we are ready to do that for ourselves and for those less represented.”

MUTEMA RICHARD, HEAD MASTER, JATISHA SCHOOL FOR ORPHANS AND VULNERABLE CHILDREN: “It is time for us to begin changing the way people have been thinking for centuries. Children with disabilities are valuable to our schools. They need education, but they provide education as well. If we are seeking ways for our communities to be more self-sufficient, we must allow all people the ability to contribute to this cause, including those with disabilities.”

YVONNE ZIMBA, YOUTH EMPOWERMENT SPECIALIST, CHILDREN IN NEED NETWORK (CHIN): “We are working to create a new environment within CHIN as well as within Zambia. People with disabilities were cast aside for many years. We are now banding together to create a new, and strong, and powerful community. Our allies—countries like the United States—have done the same thing before us. That is why we turn to such allies for direction and support. We have faith that we will be able to create an equal society in our country, as well.”

by Betsy Valnes

Executive Director of the National Youth Leadership Network Mobility International USA miusa.org Children In Need Network of Zambia chin.org.zm ABILITY 37

TUSCAN WHITE BEAN SALAD ON CROSTINI This elegant appetizer or flavorful side dish features healthy beans. Begin tossing ingredients together about 45 minutes before serving, so the salad can chill in the refrigerator for 30 minutes. Aside from its star, the white bean, the tomatoes, onions, and parsley in this recipe are also rich in cancer-fighting nutrients, while the calorie count is on the skinny side.

Ingredients: SALAD DRESSING: • 2 teaspoons olive oil, divided • 1 garlic clove, minced • 1 teaspoon dried oregano • 1/4 cup cider vinegar

BEAN SALAD: • 2 16-ounce cans cannelloni beans or other white beans, rinsed and drained • 1-1/2 cups diced plum tomato • 1/2 cup chopped Vidalia or other sweet onion • 1/2 cup (2 ounces) crumbled blue cheese • 1/3 cup chopped fresh parsley • 1/2 teaspoon salt • 1/2 teaspoon ground pepper Two loaves deli-style bread for the crostini. (French, Italian, or whole-wheat, for example.)

Directions: To prepare dressing: In a nonstick skillet, heat 1 teaspoon of olive oil over medium-high heat. Add the garlic and oregano; sauté for 30 seconds. Remove from heat and stir in vinegar.

To prepare the salad: In a large bowl, combine remaining teaspoon of olive oil and the next seven ingredients: beans through pepper. Add the dressing to the bean salad; toss lightly. Cover and chill for 30 minutes before serving.

To prepare crostini: Slice bread thinly. Toast under a broiler or in the toaster. Top with bean salad. Serves 8.

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Approximate per serving: 289 calories, 6 grams of fat.

Note: Cannelloni beans are large, white Italian kidney beans. Great Northern beans, which look like white lima beans, can be used as a substitute.

CRISPY SHRIMP SENSATIONS If you love shrimp, here’s a crunchy new way to eat them.

Ingredients: • 1 pound medium shrimp, peeled and de-veined (about 24 shrimp) • 1/4 cup cornstarch • 1 tablespoon water • 2 large egg whites • 1- 1/2 cups finely crushed, reduced-fat buttery crackers (about 35 crackers), such as Ritz • 1 teaspoon paprika • 1/4 teaspoon salt • 1/4 teaspoon pepper • cooking spray • 1 12-ounce bottle cocktail sauce • lemon wedges Directions: Preheat broiler. Place shrimp and cornstarch in resealable plastic bag. Close bag and shake to coat. In a small bowl, combine water and egg whites; beat until foamy.

In second small bowl, combine cracker crumbs, paprika, salt, and pepper. Dip shrimp in egg white mixture, then coat with crumb mixture.

Place on a baking sheet coated with cooking spray.

Spray shrimp with a light coat of cooking spray. Broil 5 minutes or until the shrimp are done, turning once.

Serve with cocktail sauce and lemon wedges. Serves 8.

Approximate per serving: 310 calories; 4.5 grams of fat.

MINTED MELON BALLS Lime juice, mint, and a spoonful of sugar add an upscale twist to this simple fruit salad recipe, and one cup provides one of the five servings of fruits and

vegetables needed each day to help ward off cancer.

Most people consider melons to be a fruit, but they are really vegetables related to the cucumber and the gourd.

Ingredients: • 2 cups watermelon, seedless or seeds removed • 2 cups cantaloupe • 2 cups honeydew melon • 1/4 cup water • 2 tablespoons sugar • 2 teaspoons lime juice • 3 tablespoons fresh mint, chopped finely Directions: Scoop out watermelon, cantaloupe and honeydew melon meat with a melon baller. In a small saucepan over medium heat, bring water, sugar, and lime juice to a boil. Boil 2 minutes and remove from heat.

Cool completely. Toss sugar mixture together with melon and mint. Chill well. Serves 8. Approximate per serving: 60 calories; 0 grams of fat

WARM CHICKEN SALAD & WALNUT SHERRY VINAIGRETTE Ingredients: • 4 chicken breasts, skinless, poached • 3 tablespoons canola oil • 4 ounces walnuts • 2 scallions, sliced • 1 clove garlic, minced • 1/2 cup sherry • 1/4 cup white wine vinegar • salt and pepper • salad greens • chives, chopped, for garnish Directions: To poach chicken breasts, bring a pot of salted water, enough to cover the chicken, to a boil. Add the chicken.

Return to a boil, then reduce the heat to a simmer and cook 10 minutes, or until the meat is white in the center.

Remove chicken from the water. Salt and pepper the meat and keep warm.

In a sauté pan, heat 1 tablespoon of the oil and add the walnuts. Saute for 1-2 minutes, giving the nuts a touch of toasting. Remove from pan. Add scallions and garlic.

Saute 1 minute. Add sherry and simmer until reduced.

Meanwhile, slice the chicken crosswise in strips. Add the vinegar and 2 remaining tablespoons of canola oil to the sauté pan. Heat through. Add the chicken and walnuts to the pan. Toss with the vinaigrette.

Serve the chicken over a bed of salad greens. Use all the vinaigrette in the pan to drizzle over the chicken. Sprinkle with chives to garnish. Serves 8. Approximate per serving: 306 calories; 14.9 grams total fat; 46.1% calories from fat. cancer.org

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ABILITY Photos by Nancy Villere - CrushPhotoStudios.com

Chet Cooper: You’re a pretty busy guy these days. How did you first make your way onto the stand-up scene?

Howie Mandel: In the mid-1970s, there was this huge boom of stand-up comedy throughout North America. I went to see a show at a club called Yuk-Yuks, in Toronto, and I was just fascinated. I ended up coming back for amateur hour on a Monday at midnight, and got up there without any thought as to what might come of it.

It was a cool feeling to garner that laughter, you know? I’d found a new passion in life, and a lot of people of like mind: outcasts who were getting up there and trying to make people laugh.

Cooper: What could be better?

Mandel: A few months later, I was in California on vacation and came across the Comedy Store on Sunset Boulevard. I decided I’d do something there. If I made a fool of myself it was okay ABILITY 41

Photos by Nancy Villere - CrushPhotoStudios.com

HOWIE AT HOME: After battling social isolation as a teenager, Mandel found success as a stand-up comedian, as host of NBC’s Deal or No Deal, and as a guest judge on America’s Got Talent.

because I was 3,000 miles from home. In that audience, there was a producer from Make Me Laugh, an old comedy game show. He hired me, which gave me a great story to tell about my vacation.

year, and I don’t want every one of them to be the same.

If I get in trouble on stage, or if I go blank, it makes for great moments of entertainment. That approach has worked for me in the past, and I hope it continues.

So I went back to my regular job, at a carpet place, and after that Make Me Laugh episode aired, I started getting calls from Merv Griffin and Mike Douglas to come out and do shows. Diana Ross saw me on Merv Griffin and hired me to be her opening act. I thought, “I love doing this. Why not do it full-time?” So I took the plunge.

Cooper: I talked to Jay Leno, years ago, about ad-libbing, and he said, “Nobody ad-libs.” And I said, “What about Robin Williams?” And he said that Williams is the best at having a big bag of tricks he can pull from, material that he’s thought of and rehearsed on his own time.

Cooper: You left a good job in carpeting?

Mandel: Yes, and then one thing led to another, and now I’m in ABILITY Magazine! (laughs) I was always scared to death on stage, though. I didn’t really understand what I was doing, or why the audience was responding, so I would say,”What? What?” and somehow that became a catchphrase.

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Mandel: Well, I’m not saying nothing is repeated.

There is a bag of tricks that, after 30 years, you know you can pull from. I have tried and proven pieces that I know will always elicit a laugh. People are paying money to see me, and they want to hear me do these cartoon voices, and some of the pieces I’m known for.

But my favorite moments are those that have never happened before. Like this interview. It was not prewritten, by the way.

Cooper: That line wasn’t rehearsed?

Cooper: Oh, it was rehearsed. I can tell this was all rehearsed.

Mandel: No. I don’t rehearse. I’m more comfortable in my discomfort.

Mandel: No! In fact, as you read this, you’ll see this is the first time I’ve ever said this stuff.

Cooper: You just go up there with some ideas, and then ad-lib the rest?

Cooper: Would you like to speak directly to the ABILITY reader?

Mandel: I hope to. Fear is my fuel. A lot of what I do is ad-libbed and improvisational. I do 200 live dates a

Mandel: I don’t know. Can we break that fourth wall in print?

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Cooper: Click here.

Mandel: This is online too?

Cooper: It’s both in print and online, but I’ve often thought about incorporating a hotlink on our printed page that takes the reader into a web-based hologram.

Mandel: I don’t believe anybody’s actually reading this magazine online. If they’re online, they’re looking at porn. [laughter]

One night, when they were watching Candid Camera, I finally understood what comedy was all about. I heard the laughter on television, I turned around and saw my parents laughing, and that’s when I thought: “This is great. This is what I can do. I’m gonna prank somebody.”

Cooper: What grade were you in when you made that discovery?

Mandel: Second. [laughter] No. Twelfth.

Cooper: You were a senior?

ABILITY is what they click to when their wife comes into the room:“What are you doing?” “Reading that article from ABILITY, honey.”

Mandel: No. In Canada we had 13th grade.

Cooper: We call that college.

Cooper: When you’re on stage, do you interact with your audiences? I haven’t seen your live show.

Mandel: It’s phenomenal. I’m a huge fan of mine. I go to just about every show I do.

Cooper: (laughs) That’s dedication! Did you joke a lot when you were in school?

Mandel: Yes, but nobody thought I was that funny. I was kind of a misfit, actually. When you’re young, you want to be like everybody else, and I was like nobody else. I couldn’t sit still. I was impulsive. I still am. What is now called a “talent” did not serve me well as a child. I didn’t have friends. I was really an outcast.

Cooper: Why? Mandel: For one thing, this was in the mid-1950s. At that time, Attention Deficit Hyperactivity Disorder (ADHD) was not an issue in school. Or at least, nobody talked about it or labeled it. Today ADHD is very prevalent, but I would imagine there were just as many kids who had it back then as have it now.

Mandel: I didn’t finish high school! Can I still be in ABILITY? Cooper: We’ll have to think about it. So, were you ever officially diagnosed with ADHD? Mandel: I’ve been diagnosed with ADHD and OCD. Cooper: Watching you on television, I always wondered, who is the person who’s behind all of the nervous hand movement?

Mandel: It was me. Just not as medicated as I am now.

Cooper: When did you first start to feel you may have some kind of condition?

Mandel: I don’t remember a time when I didn’t feel there was an issue. But I wasn’t diagnosed until adulthood. I’ve always felt a little bit different, and I always knew I wasn’t as comfortable with life as everybody else seemed to be. But I didn’t know what I could do about it.

When I was a kid, I was considered troubled. I wasn’t just the class clown who lobbed a funny quip from the back of the class. I was outrageous.

When I was a kid, I didn’t know anybody who went to a psychiatrist. There was always a stigma attached to mental health issues. I think there still is. But now I’m taking care of myself.

Cooper: How so?

Cooper: When did you make the decision to get help?

Mandel: I once called construction companies to bid on an addition to the school library, so that there would suddenly be people outside, measuring the building.

Mandel: Not until I was in my forties. There wasn’t some lightbulb that went off in my head. It was just becoming harder and harder for me to function.

“Who authorized this?” the principal would ask. The answer: “Howie Mandel.”

One issue that I talk about freely is my germophobia.

I’m in public life, obviously, and yet I’m somebody who really is not comfortable out in the world. So that became an issue for me. I found it becoming harder and harder for me to get along, and I was spending longer and longer in the shower. I wanted to spend a moment outside. I needed help. So I got help. And once someone put a name to this thing, it all became easier.

Cooper: (laughs) Teachers must’ve loved you.

Mandel: I thought that was funny, but nobody else did. I was mostly entertaining myself, though. My parents both had a great sense of humor, and always laughed a lot.

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Photos by Nancy Villere - CrushPhotoStudios.com

Cooper: You’re taking medications now?

Mandel: Yeah. And I’m getting therapy. I’ve done everything. I’ve been doing this process for years and years and years. I’ll do whatever it takes to function and cope.

Cooper: That seems reasonable.

Mandel: Everybody in life needs coping skills. We all have stress in our lives. We all have neuroses, relationship problems, whatever. Yet very few people seek help.

We take care of our dental health, but we don’t take care of our mental health.

Cooper: That rhymes.

Mandel: That’s why I say it. I used to say, “people should take care of their ankle health, and not their mental health”, but that never caught on.

Cooper: (laughs) Do you have children?

Mandel: Three. My daughter is 26, and is a teacher in East Los Angeles. My son is an actor on Scare Tactics, which is a show on SyFy, and just finished a movie. And my youngest is 18. She’s studying sociology in college.

Cooper: And your wife?

Mandel: She’s not in school anymore. (laughs) We just celebrated our 31st anniversary. She used to be in retail, but she sold that business and now does real estate.

Cooper: A lot of people in your life today have been there from the beginning.

Mandel: Everybody I work with has been with me for a long time. I’ve known my manager since I was 14, and my wife’s known him since they were in preschool. My manager and I are best friends. I like stability around me. There’s no stability in this business, so I like my world to be as stable as possible.

Cooper: When you were first getting to know your wife, how did you tell her about your germophobia, so that she could understand it?

Mandel: I don’t know that she understands it, even today, but she always knew about it. I would leave often to go home and shower.

NEVER LET THEM SEE YOU SWEAT: As a teen growing up in Canada, Mandel competed on the wrestling team, and secretly took lots of showers to cleanse himself of his germy opponents.

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I think she thought I was odd, but very clean. I took four or five showers a day. I didn’t want to touch things. I masked my germophobia for many, many, many years. I hid a lot of it. She was not in the bathroom with me while I was scalding my hands, so I didn’t really let her in on that, but she knew that I was obsessed with washing my hands.

Cooper: She didn’t suspect anything?

Mandel: I could sometimes cover my condition with logic: “Let’s make a path in this hotel room with towels, because you don’t know what was dripped all over this carpet.” So she would walk along my path. “Let’s take the comforter off the bed with the salad tongs, because we don’t know what’s on it.”

I think the blacklight bothered her, though. I’d turn off the light, she’d think I was being romantic, and then I’d click on the blacklight to look for stains. That really ruins the romance.

Cooper: Sure. I think that would freak anybody out.

Mandel: She liked the kookiness in me. I’ve been living CSI: Crime Scene Investigation my entire life.

When I was a kid, my parents bought me Green Ghost.

Remember that game?

I have been persistent in this business. I would imagine she saw the charm in my persistence. Maybe. I don’t know what it was.

Cooper: I know you do some advocacy work in the field of mental wellness. Have you been doing any of that recently?

Mandel: Yes. I spoke on Capitol Hill for National Children’s Mental Health Day. I’m mostly trying to help remove the stigma that surrounds mental conditions and mental health professionals, because I don’t think there’s anybody alive who couldn’t benefit from a mental health professional being a part of his or her life.

Take a look at all the bullying and the shootings that happen in schools. Often the perpetrators have been identified as “problem children” long before any incidents happen, yet there’s nothing in the curriculum to deal with those kinds of problems. Our kids are spending eight hours a day in school, and a lot of their issues are easily identifiable, even to the untrained eye. Imagine how these kids might benefit from just having access to someone who’s trained to identify a situation and fix it.

Cooper: Were you bullied as a kid?

Cooper: I’m not sure.

Mandel: It was a blacklight game. Anyway, I had that game, and I looked at my blacklight poster on the wall and I thought, “What is all this other crap that’s being illuminated?” [laughter] It freaked me out. I went into a room to play a game, I turned on the blacklight, and I screamed, “Am I going to die? What are all these blotches!”

A lot of kids were afraid of ghosts and goblins. I was afraid of stains.

Mandel: No. People would just stay away from me. I was not invited to be a part of anything. Plus, I was always the smallest kid in school. I wanted to meet people, but everything I’ve ever joined was the worst possible scenario for whatever my issues were. The only team I could get on in high school was wrestling. I was 90 pounds, and I looked like a girl.

Cooper: I’m not going to laugh.

Mandel: And I wanted to meet girls.

Cooper: By wrestling them?

Cooper: What would have happened if you didn’t have that blacklight?

Mandel: I would have sat on some s--t I didn’t want to.

Cooper: Maybe it’s better not to know what germs we’re touching. Maybe ignorance is bliss.

Mandel: I wish I were ignorant. I didn’t get my General Educational Diploma (GED), but that doesn’t seem to have helped me.

Cooper: Your wife must have found your qualities endearing. That’s what matters...

Mandel: You know, she wasn’t all that attracted to me.

It took me the longest time to get her. There was nothing attractive about me, and I had a reputation for being outrageous. But I was persistent in pursuing her, just as

Mandel: (laughs) No. I didn’t wrestle girls. I didn’t want to touch anybody, and yet there I was, rolling on the floor, sweating with strangers, looking like a girl.

Cooper: Why’d you join the team?

Mandel: I thought I was going to meet people. I thought I was going to be part of a team, and that girls were going to like me because I wore a uniform. I didn’t realize the uniform was a ‘onesy.’

A lot of people thought I was a girl at that time, because I had long hair. So I figured out that the only way I could talk to girls was to go into the girls’ restroom, brush my hair in the mirror, and talk to the ones who came in.

Cooper: You really did that?

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Photos by Nancy Villere - CrushPhotoStudios.com

Mandel: Yeah. That’s where my wife met me, actually: in the girls’ restroom. I could hear girls talking in there, so I went in, stood at the mirror, brushing my hair, and girls would come in, and we’d talk. They didn’t know I was a boy.

Cooper: I can’t tell if you’re joking or not.

Mandel: I’m not. I weighed 89 pounds, I didn’t shave, and my voice was high. Plus, I had long, beautiful, flowing hair.

I remember I had a job once, selling egg-salad sandwiches at bingo. My mom drove me to work and, while we were in the car, guys would honk and whistle, trying to pick me up. That was my world in the ‘80s.

Cooper: You’ve come a long way.

Mandel: I was defintiely a late bloomer. I even tried to talk with my voice lower for a while. My mom kept hearing “How old is your daughter?” wherever we went.

Cooper: How did your book come about? I like the title: Here’s the Deal: Don’t Touch Me. Mandel: I wrote the book to collect a lot of really funny stories about my experiences in this business. It was put 48

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together in partnership with a guy who could help me organize my thoughts, because organization is not my strong point. We’d hang out for hours and hours, every day, for a couple of months. He’d ask questions and I’d answer them. When we finally printed out the transcripts of everything I’d said on tape, it was something like 900 pages.

Cooper: Wow. Mandel: My original intent had been to write something less personal. I didn’t want to talk about my issues—not because I was hiding them, but because I didn’t think that’s what the book should be about. So I was a little taken aback by how much of the book really turned out to be about the trials and tribulations of being me. And I was embarrassed and afraid when it got published. But as it turned out, that book has prompted a lot of people to come up and say, “Me, too.” And that experience has helped me become more comfortable with my mental health issues. Enough people related to my experiences that revealing those experiences didn’t turn out to be as embarrassing as I’d thought it would.

Cooper: You’ve got nothing to be embarrassed about.

You’ve built quite a successful life.

Mandel: It’s a constant journey.

[MANDEL’S WIFE, TERRY, ENTERS THE ROOM.]

Mandel: (to Terry) Did you think I was nuts?

Mandel: There she is. (to Terry) The first time we met, was I in the girls’ bathroom brushing my hair?

Terry Mandel: You know what? Because I didn’t live with you, I really didn’t know how much you used to shower. But I know you used to go home a lot. “Where are you going?” “I’ve got to go home and shower.”

Terry Mandel: [laughter] Yes. I knew you were a guy, even if nobody else did. You had a reputation.

Mandel: What was my reputation?

Cooper: (to Terry) If you were going give some advice to someone who’s dating someone with OCD—

Terry Mandel: Crazy and wild.

Mandel: “Run!” [laughter]

Mandel: Not good, right?

Cooper: —would you think that maybe for a period of time it’s actually a good thing to hide some of those differences and just let the love occur? Or should it all be out there in front?

Terry Mandel: No. Cooper: You liked him because he was crazy and wild?

Terry Mandel: Not at first. At first, I said, “No way.” He had this horrible reputation.

As a matter of fact, we once got in a car accident while he was driving. It was so bad we flew over to the parking lot and spun out.

I turned to him afterwards, as everybody was screaming, and I said,”Very funny!” Because I thought he had done it as a joke.

Cooper: And it was not a joke?

Terry Mandel: I don’t think Howie knew that he had OCD, especially back then. I think he just did these rituals and had these thoughts, and he didn’t share them until later.

But I didn’t think it was weird. There were certain things I thought were weird about Howie, but I didn’t live with him then, so I didn’t really know all of his stuff. Nobody really thought about those things then.

Now people are much more aware of these things.

Everything’s out in the open. People are talking about their differences. It’s good. It helps Howie to talk.

Mandel: And I seem to be much better.

Terry Mandel: No. He just looked at me like I was nuts.

And then we fell in love.

Cooper: Did you see a transition?

Cooper: Howie told me that, when you first talked to him, he was very upset with you because your hair was better than his hair.

Terry Mandel: I’ve seen ups and downs, depending on Howie’s stress levels. He’ll be better sometimes, sometimes worse. He fought against taking medication for a long time, and then he started taking it.

Terry Mandel: (laughs) His hair was a mess. He had really long hair.

Mandel: Hair today, gone tomorrow.

Cooper: If you knew Howie had this bad reputation, why did you talk to him?

Terry Mandel: He was cute.

Mandel: And little.

Terry Mandel: He was adorable. He was shorter than me.

Mandel: All right. [laughter]

Cooper: I think there’s a tendency to fight taking medications, because they think their creativity might diminish if you’re taking them...

Terry Mandel: He thought it would change his whole personality. It really didn’t. It just helped his thoughts, I guess. Even with medication he has the same thoughts, but now they don’t give him anxiety attacks or affect how he functions.

Mandel: I also spend less time in the hospital.

Terry Mandel: (to Howie) You weren’t there that much.

I think you’re better now, don’t you?

Cooper: Terry, when you first started dating Howie— when you noticed he washed his hands a lot, showered a lot—what were you thinking, other than that he was cute?

Mandel: Yeah. I’m fine.

Terry Mandel: He was the cleanest guy I had ever seen.

Cooper: It’s about coping skills.

Terry Mandel: Your head’s better. Therapy has helped.

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Terry Mandel: He’s a good coper. He’s better than I am at coping. I can fall apart over any little thing, but Howie will just help himself and get through it. He’s even better today than he ever was.

Cooper: Through a flash mob?

Mandel: Right. What if we took the recipient of the message to a public area and had a thousand people relay this message in a giant musical?

Mandel: I’ve gotten a lot of help.

Cooper: (laughs) I like it.

Cooper: Do either of you have any words of wisdom for relationships that might have these kinds of challenges?

Mandel: I’m on the road a lot. That works for us.

Terry Mandel: [laughter] Communication is so important. A lot of people give up so easily. You just have to care enough, believe enough.

Mandel: She’s pretty smart, my wife. Those are great words of wisdom from Mrs. Mandel.

Mandel: So we’re doing it. The first show aired a couple of months back, right after American Idol, on Fox. We have a production company. We’re shooting a lot of stuff right now.

Cooper: Good luck with it.

Mandel: So now that I’ve told you my life story, can I still be in ABILITY? Cooper: I’ll let you know.

Terry Mandel: (to Howie) I’ll let you go back to talking about your abilities. Can you talk about Mobbed?

Mandel: Yes. Mobbed is a flash-mob television show.(to Chet) Do you know the phenomenon of flash mob?

Cooper: We just had one outside your house.

Mandel: If you’re alone, it’s just flashing. There’s got to be a bunch of you for it to be a mob.

Cooper: 4 folks, 2 squirrels and a dog.

Mandel: It’s become this viral phenomenon that I thought would be great to capture for television. In some sense, television has tried to do this before, but it has never really worked. There’s never been a hook, you know? A story to tell.

Cooper: Do tell.

Mandel: I thought, what if somebody has a message they want to relay to someone else? A very private, intimate message. Like, maybe they want to tell their boss to take this job and shove it, or they want to come out of the closet to their family, or they want to ask somebody to marry them.

howiemandel.com

OBSESSIVE-COMPULSIVE DISORDER is an anxiety disorder characterized by recurrent unwanted thoughts (obsessions) and/or repetivitive behaviors (compulsions) such as handwashing, counting, checking or cleaning. These so-called “rituals” are often performed with the hope of preventing obsessive thoughts or making them go away. Though rituals provide only temporary relief, not performing them markedly increases anxiety.

People with OCD may be plagued by persistent, unwelcome thoughts or images, or by an urgent need to engage in certain rituals. They may be obsessed with germs or dirt, and wash their hands over and over. They may be filled with doubt and feel the need to check things repeatedly. Effective treatments for obsessive-compulsive disorder are available. New, improved therapies can help most people with OCD and other anxiety disorders lead productive, fulfilling lives. For more information, locate mental health services in your area, affordable healthcare, NIMH clinical trials, and listings of professionals and organizations.

National Institute of Mental Health

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Photos by Nancy Villere - CrushPhotoStudios.com

L to R: Chet Cooper and Mandel listen to wife Terry Mandel (off camera) talk about the pranks she endured while she and Howie were first dating.

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achievement. On gray, dreary days, she often called me to the front of the classroom and said, “Nelson, how about perking things up? Sing a song or tell us a story.”

“Sure, Mrs. Parsons!” I’d say, brimming with enthusiasm to entertain the class. Under Mrs. Parsons’ tutelage, I began to read one-syllable words. See Spot run. Go, Dick, go. Look, Jane, look!

One day, Mrs. Parsons pulled me aside as I was coming in from recess and asked,“Nelson, where does your mother take you for speaking and voice lessons?” I told her I didn’t understand the question. “Oh,” she said, realizing that whatever it was she saw in me somehow came naturally.

With the guidance and encouragement of Mrs. Parsons, I made up my mind about a future career. Every person in Juniata County listened to WJUN 1220 AM’s Ralph Parker, the station’s owner, who had a wonderful voice.

Mrs. Parsons would compare my voice to his and say, “Oh, Nelson, with that voice of yours, I can just hear you on WJUN when you grow up.” I took note of that.

When I entered Mrs. Williams’s second grade class, I was eager to recapture the same sort of success I had enjoyed in first grade. Mrs. Williams was a nice lady, and all the older kids I knew said she was friendly. Soon after the year began, however, something went wrong.

All the other kids seemed to be doing fine, but I was struggling. The words in my readings had multiple syllables and were harder to read. Trying to put them together into a sentence was difficult. And more difficult than second-grade reading was second-grade writing. I just need to practice more, I thought, so I took my books and papers home each night, hiding in my room as I tried to make sense of them all.

rowing up, I thought I was the only kid like me in the world. Many years later, I came to understand that my story is the story of millions of Americans who struggle with literacy. We all have some obstacle with which we’ve had to wrestle. What I finally figured out was that I was the only person in my life who could do anything about what was holding me back. That realization was a quantum leap.

In the early 1960s, McAlisterville, PA, population 800, was a bustling Rockwellian village an hour northwest of Harrisburg, the state capital. I was in first grade, and I don’t think any kid in the history of the world ever loved school more than I did. My teacher, Mrs. Parsons, was a petite lady in her early forties with a pleasant smile and a passionate dedication to each student’s 52

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One day in class, to my horror, Mrs. Williams called on me to read out loud. I stammered and stuttered and mispronounced almost every word. The other kids read well, but I couldn’t get through a sentence. A few kids snickered, and soon most of the class was laughing. Mrs. Williams quieted the class and called on someone else to read out loud. I was so humiliated, I wanted to cry. But crying was not an option.

As the school year marched on, I watched my classmates grow while I shrank. There was so much confusing information that I was overwhelmed. I couldn’t take it all in.

But I tried and struggled to do my best for Mrs. Williams.

Though I was having a hard time, I didn’t feel dumb.

Outside of school, everything made sense. When I looked at my dad’s oil truck, I knew exactly how it worked and the mechanics of how the fuel went through the hose and into the tanks. But I doubted myself because I couldn’t read. Fortunately, somehow, I passed second grade, more determined than ever that third grade would be a fresh start.

Unfortunately, a month and a half into third grade, I was barely treading water. In class, I felt more and more like an outsider. I couldn’t keep up, and my boredom was maddening. At the same time, I was constantly on the edge of my seat, hoping I wouldn’t get called upon and be embarrassed in front of the class. My classmates had mastered printing their names in second grade—a task with which I still struggled. If someone asked me to spell my first name out loud, I could rattle off N-E-L-SO-N. But getting that from my head and down onto paper was a struggle.

That was the year we moved on to cursive, which to me looked like scribble. Mrs. Clark handed out worksheets every morning with the usual directive: “Write your name in cursive on the top of your paper.” I really tried, but every day my name came out as a jumble of illegible chicken scratch.

Mrs. Clark came up with a plan she felt would encourage me to try harder. One morning, we were busy hanging up our hats, gloves and coats, when she wrote something big across the blackboard. We took our seats and looked at the curious etchings on the board.

That’s when Mrs. Clark tapped her pointer on her desk several times to get everyone’s attention.

“Class, class,” she said. “Does anyone know what I have written on the chalkboard?” Nobody seemed to know. “This is how Nelson Charles Lauver lazily scribbled his name on his paper yesterday.”

The room erupted in laughter and chanted, “Nezon Chass Liver! Nezon Chass Liver! Nezon Chass Liver!”

“This is what you are to call Nelson for the rest of the day,” Mrs. Clark instructed the class, “until tomorrow when I’m sure his name will be something different.” I laughed along with them to seem unaffected, but on the inside, I was thinking: I hate you, I hate you for this.

Why are you doing this to me?

Lazy? I wasn’t lazy. At that moment, instead of being thought of as the lazy kid, or the dumb kid, I chose to be known as the “bad kid.” I knew there would be ramifications, but in keeping with my new “bad kid” persona, I pushed Mrs. Clark’s crazy-button at every opportune moment. Making a face at her, making an inappropriate remark, acting indifferent, or just ignoring her helped prevent her from calling on me, for the sake of her personal sanity.

Mrs. Clark often sent me to the hallway with my desk and chair so I would not disrupt class. This was embarrassing because anyone who entered the school for any reason could see me sitting there, alone. But that could never compare with the embarrassment I felt at being the “dumb kid.”

If, on occasion, Mrs. Clark did call on me, I’d often 54

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throw something—a book, a pencil, a tablet. I got in trouble routinely, and was frequently sent to see the senior teacher and disciplinarian, Miss Marybeth. She was a solid woman with a sturdy center of gravity, strapping arms and shoulders, and not a touch of makeup. Her thick, blonde hair was neatly wrapped up in a bun, atop which sat her ever-present prayer covering.

She was a pious woman who could recite the Bible cover to cover.

Miss Marybeth’s disciplinary “office” was a desk inside the janitorial storage room. Beside her desk was a chair where she counseled children, right before she paddled them. The construction of the paddle was well thought out, and bore all the efficiency that could be crafted in a Pennsylvania Dutchman’s woodworking shop.

Miss Marybeth’s paddle followed the age-old standard design. The handle accommodated a double-fisted swing. A dozen or so three-quarter-inch holes had been drilled through the paddle to ensure it whistled through the air with maximum velocity. The whistling sound served another purpose, too: it struck terror into the heart of the child who was about to be anointed with the sting of hellfire.

I was sent to see Miss Marybeth for my first counseling session after hurling a book at Mrs. Clark. I devised a plan as I sat in the chair of counsel, waiting for Miss Marybeth to arrive and warm my ass with religion. It was a brilliant plan, I might add, and one of which I’m still secretly proud. I decided to place the onus of my bad behavior on someone else.

Finally, Miss Marybeth presented herself to deal with my book-hurling infraction. She took the paddle down from its hook on the wall and laid it on the desk as she prepared to counsel me. I handed her a note from Mrs. Clark. She examined it, refolded it, and laid it on top of the paddle.

“Nelson,” she said in her thick Pennsylvania Dutch accent,“what do you have to say for yourself?”

I looked down at my shoes and quietly said, “I didn’t do it.”

“Then do tell, Nelson. Who was it?”

I swallowed hard for effect, kept my eyes focused on my shoes, and then softly uttered: “It was Satan.”

Miss Marybeth gasped and pushed back in her chair, hurriedly reciting a passage to ward off the dark angel.

“Satan said he wants you to paddle my backside until it turns purple,” I said.

Miss Marybeth sprang to her feet in defiance, uttering a passage that included something about “the protective blood of Jesus.” She hung the paddle back on the

wall and boldly proclaimed, “I will not!” But the school’s male teachers were not so easily manipulated. As my antics got me thrown out of class again and again, I received regular paddlings.

One day, a teacher hit me at the wrong angle, and with such force that the blow broke my arm. On other occasions, after being sent to the principal’s office, I received “in-school suspension,” which meant being thrown into a tiny vault with a heavy-duty steel door. The vault’s original purpose was to store cafeteria money, locker keys, and anything else worthy of security.

But now, in the hands of the principal, it was a jail cell for incorrigible youth. Locked in the dark for full school days, I breathed shallowly so I didn’t use up all the oxygen. Inside that cell, I couldn’t tell whether five minutes or two hours had passed, and I was always afraid I would die in there.

In late summer 1974, I was less than five years away from being able to officially drop out of school at sixteen. At the same time, I felt a nagging concern about what my future would hold. I kept telling myself everything would be okay. I’d be able to make a go of it as a businessman or farmer. I just needed to do the rest of my “time” first.

I actually hated the idea of becoming a drop-out because it meant everyone who had ever said I was lazy and didn’t apply myself would now have irrefutable evidence to back up their claim. Mom and Dad wanted each of their three kids to have a diploma, and I knew they were going to be heartsick if I didn’t earn mine. But from my perspective, more years of sitting in school and not participating seemed like a waste of time. I was 90 percent sure that if I stayed, the principal would eventually provide me with a diploma, just to get me out of his sight.

One day, as I earned money painting lines for parking spaces, a guy pulled up beside me to ask for directions. I rattled off the directions as only a local could, and then pulled the start cord on my paint sprayer to get back to work.

The man went back to his car only to return several minutes later with a tablet and pen, asking me to write down the directions. I told them to him again, as he tried to force the tablet and pen upon me.

My struggle was painfully apparent to both of us. Finally, he took the pen and the tablet back and asked, “You can’t read or write, can you?”

I paused for a moment, taking a deep breath. “You are correct, sir. I am functionally illiterate.”

“Have you ever heard of dyslexia?” he asked.

“Sir, I’ve never heard the term you just spit out,” I replied, “but my father had me evaluated by some of the best medical minds, and I’m doubtful that, at this point in my life, anyone can help me.”

“I disagree,” the man said. “If you are indeed dyslexic, as I suspect you may be, there is great hope for you. Let’s sit down over here on the tailgate of your truck and talk.”

We talked for an hour and a half, and I opened up to this stranger who had a comfortable grandfatherly quality. I told him all about my school years, when my reading and writing difficulties began, how I covered them up, and the unfortunate results. I told him about my fears of being the dumb kid when I just wanted to be normal.

The man went on to tell me that dyslexia has nothing to do with one’s level of intelligence, and rattled off a list of people throughout history who were thought ABILITY 55

to have dyslexia: Nelson Rockefeller, Franklin Delano Roosevelt, Albert Einstein, and others.

“Dyslexia is simply a disconnect, a processing issue inside the brain, which makes reading and writing difficult,” the man said. “It has absolutely nothing to do with your intelligence.”

Having a name for my challenge made me feel hopeful, but at the same time, I was overwhelmed. If this was my problem, how could I possibly get a handle on it? But cautious optimism grew inside me. The man suggested I start by contacting the Pennsylvania State Office of Vocational Rehabilitation (OVR) to get an expert evaluation.

By spring 1994, I was 30 and no longer functionally illiterate. My reading had improved dramatically, but not without 18 months of determined practice. The goal of my rehabilitation was to help me reach my full potential in a career for which I was well suited.

That evening I called my mom and told her I’d met a gentleman who thought I might have something called dyslexia. She said that, just a few days earlier, she had caught a news snippet about dyslexia, and encouraged me to find out more.

As I weighed the options in my mind, my childhood dream of expressing my thoughts and ideas over the airwaves as a broadcaster appealed to me more and more. “I’d like to be a broadcaster,” I told my caseworker.

My initial meeting with OVR took place at the Office of Employment Security in Lewistown, PA. My caseworker secured me an appointment for an evaluation with a doctor in State College, who indeed diagnosed me with dyslexia. Although the doctor determined my above-average strength in auditory processing (listening skills) would be helpful in my rehabilitation, her official report noted great weakness in visual memory and stated, “because of his age and the severity of the involvement, extensive intervention will be needed.”

“Wow, we’ve never had anyone make that request. I’m not sure where to begin.”

The bottom line: professionals believed it would be nearly impossible for me to make significant progress in learning to read and write on my own. My best bet, they said, would be to hire a tutor and work one on one. I returned home that evening to a message on my answering machine from one of State College’s graduate students, Cheryl. She offered her services as my private tutor, at no charge, for as long as I needed. She said she was willing to put in the time if I was serious about learning. I immediately took her up on her offer.

I began 90-minute tutoring sessions, two to three evenings a week, with Cheryl. She was amazingly dedicated and arrived each night with a fresh lesson plan.

Contrary to popular belief, the experience of dyslexia is not akin to seeing words and letters backwards or upside down. In my case, at least, it is more of a confused mass of letters and words on a page—as if someone has placed a piece of window screen over the text and moves it around while I try to read through it. With Cheryl’s help, I soon discovered that larger, double-spaced print made a tremendous difference for me.

Cheryl also suggested we try placing various colored sheets of cellophane over the text. Her plan worked! Yellow cellophane filters helped calm the chaos and anxiety in my brain.

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Another helpful tool came in the form of an inexpensive set of phonetic audio teaching tapes I bought at a yard sale for five dollars. The tapes sounded as if they had been recorded around a kitchen table by a husband and wife with a guitar, but they worked. After working with Cheryl for six weeks, I found I’d made great progress. I could read multisyllable words and could sometimes read all the way to the end of a sentence. I was motivated to keep going.

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I had been kicking the idea of becoming a broadcaster around in my head for a while. I thought the best way to start would be to visit a professional recording studio and make an audition tape. My caseworker agreed and, within a couple of weeks, I recorded my first voice audition tape at a studio in Lancaster, PA. On my tape, I told a story about my Uncle Roy who, during World War II, had been forced to parachute out of his aircraft after it had been hit by enemy fire. Not only did he survive the incident but, with the help of the French underground, Roy spent 90 days on the run, disguised as a peasant woman riding a bicycle. He eluded German troops and triumphantly made his way back into Allied territory.

The studio owner thought it was rather odd to place a story like this on a demo and tried to talk me out of it.

But being different was exactly what I intended. I wanted to be noticed.

I decided to throw myself completely into my new career. I sold all of my line-painting equipment, except for my pickup truck, and traveled around town, shaking hands, smiling, and talking with everyone from ad agencies looking for voices for radio and TV commercials to documentary filmmakers who hired narrators. Slowly, I developed a studio schedule as a freelance voice-over artist. As it turned out, the story on my demo tape became the hook that made people sit up, pay attention,

and ultimately hire me. Producers loved the fact that I was just a real guy who could tell a good story.

Narration work wasn’t that hard to come by, and later I heard that Accu-Weather—one of the world’s largest privately owned weather forecasting services—was hiring. Emboldened by my recent successes, I decided to cold call Accu-Weather.

Though Accu-Weather’s director of broadcasting seemed reluctant to take me seriously because of my lack of “newsroom experience,” I finally convinced him to take a listen to my audition tape. By the time I left his office, I had a part-time job. Accu-Weather produced and sold local weather reports to hundreds of radio and TV newsrooms throughout the United States and Canada. Here I was, the kid who had been petrified to read in front of 25 of my fellow students, now reading the weather broadcast to millions of listeners.

Occasionally, however, I was haunted by my school years. I couldn’t go back and change anything, but I wondered about all of the kids who might have been, at that very moment, going through what I’d been through.

East Juniata still had the same principal, and most of the same teachers were still there—even the bad ones.

In my mind, while I had accepted culpability for my role in receiving a botched education, the principal and the others weren’t off the hook if they were still using the same teaching methods of my youth. I tossed and turned in bed at night as I thought about the kid who might now be locked up in the principal’s vault. I thought about the kids who were now dealing with the teachers who had paddled me and who had broken my arm. Could I truly be considered rehabilitated if I simply went on with my life with no thought for those who might still be struggling?

The debate went on in my head for months. I finally came to the conclusion that, at the very least, I needed to approach the superintendent of schools and ask a few questions regarding the current policies for identifying students with learning disabilities, punishment practices, and, most of all, use of the vault.

challenges. I inquired about current forms of punishment and, more specifically, asked if students were still being confined in the school vault.

I wrote the school superintendent. When he didn’t answer my letter, I wrote to him again. Even after I’d placed several calls to his office, I was politely told by his secretary, “The doctor is unavailable to speak at this time.”

After a few more restless nights, I sat on the sofa in my living room and stared at a list of phone numbers. Finally, I mustered some courage, picked up the phone, and called various local and regional news organizations. I told them my personal story and expressed my concern that there were still students in Juniata County with special learning needs who were not receiving help. I also condemned heavy-handed punishment and the use of the vault.

All hell broke loose. Members of the press showed up in Juniata County with pens and pads, microphones, news vans, satellite dishes and TV cameras. Within an hour of the first news van rolling up to the school, a knock came at my door. A private courier stood before me with a sealed envelope that carried my name. Inside the envelope, on Juniata County School District stationery, was a personal letter from the superintendent, requesting a meeting to discuss my concerns at a time and place of my choosing. I met with the superintendent and my old school principal, two days later, in the district’s administration building. Both men were furious that I’d had the audacity to contact the press.

I told the superintendent I simply wanted answers to some of my questions: what steps are you taking to identify students with special learning needs? Do you still use the vault to lock up kids? Are students still pounded into submission? Are children with learning problems still paddled as “remediation” for their learning difficulties? What steps are you taking to become compliant with the special education laws? But these men only seemed to be interested in having me call off the press. When I said I had no button to magically stop the media from looking into the problem, the superintendent warned me: “This will not go well for you, Lauver.”

I contacted various special education advocacy groups throughout the state to inquire how the Juniata County School District measured up against other schools, in respect to providing services to children with learning disabilities. I wasn’t surprised when I learned the school district was seriously deficient and out of compliance with state law. The Commonwealth of Pennsylvania Department of Education was sadly understaffed in the area of enforcement. It was a watchdog without teeth.

I wrote briefly of my own story and detailed the punishments I had received while attending East Juniata. I expressed my concern for current students who might be in need of special services to help them with learning

“I’m not afraid,” I told him. “I can’t imagine that, even with all your power, there is anything you can do to me that’s worse than what I’ve already survived.”

I left the two men in the superintendent’s office, both of them frantically wondering how they could dodge the media. I received letters, phone calls, and voicemails from angry citizens who felt I had no right to “meddle” in these matters. At the same time, my phone rang off the hook with calls from parents who were concerned about the overzealous punishments their children had received at school. My fears were confirmed over and over by parents who spoke of the lack of help for their ABILITY 57

children with learning problems. Few parents were willing to stand up and fight, however, for fear of retaliation.

Reporters eventually lost interest in my concerns and moved on to the next story, but a small group of parents and community leaders started to organize and question the practices of the Juniata County School District. For the most part, their questions were ignored. Then Juniata County changed forever.

In a relatively short period of time, four separate suicides of teenage boys from East Juniata High School rocked our community to the core. Each of the boys had been having trouble at school. Finally, the good and decent people of Juniata County found their voices, stood up, and started asking questions about the state of education in the county.

This time, there were too many voices to be ignored.

The family of one of the boys who’d committed suicide filed suit against the school district in the United States District Court for the Middle District of Pennsylvania.

The lawsuit stated the young man frequently visited the principal’s office, routinely pleading for academic and emotional help. The suit asserted that the 16-year-old boy had clearly been denied the services guaranteed to him under state and federal law. After his concerns were routinely ignored, the young man had finally reached his breaking point. Feeling there was no hope for him, he used a gun to take his own life, in the living room of his family’s home. Attorneys for the school district bristled as they vowed to fight the “baseless lawsuit.”

It was obvious—after countless legal depositions from many faculty, administrators and former students, such as myself—that East Juniata High School had long been an unpleasant and often brutal place for children with learning problems. The depositions made it clear that, if you were a kid in need of special help, Juniata County, PA, was the last place you wanted to be.

Under oath, the school’s principal admitted he had, over the years, used the school’s fireproof vault as an isolation chamber to punish students. Shortly after this admission, the case was settled out of court for an undisclosed sum, and the principal left East Juniata High School after having served 30 years as principal.

The newly empowered people of Juniata County voted in a new board of education, which worked diligently to bring our schools into compliance with state and federal laws regarding special education.

One day, out of the blue, I received a call from a woman in Kansas, with a request that would take me as far out of my comfort zone as I had ever gone. She was the sales manager for a large insurance agency.

“I’m in charge of a group of insurance salespeople who are having a lousy year,” she told me, “and they need some motivation. If you come to Kansas and tell the story of how your life started, the challenges you 58

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faced, and where you are today, I think my people will be inspired. I’m looking for a real person with a real story of determination and grit, and I know you’re the person for the job. I’ll pay you $3,500, plus expenses.”

A month later, I appeared before this woman’s team. I was nervous, at first, but as time went on, I loosened up and began to enjoy myself. At the end of the talk, the group gave me a standing ovation. I flew out of Wichita, KS, that night, feeling confident and thinking I just might want to pursue a career in public speaking.

After a bit of research, I learned about a gentleman who ran a speakers bureau in Hollywood that specialized in speakers with disabilities. I called him and, about six weeks later, he called me back. He wanted to send me to Minnesota to speak at a community college. This college didn’t have a very big budget, and I don’t think he had anyone else on his roster who would go for the small amount of money offered, so he decided to take a chance on me.

It proved to be a solid engagement, and the audience liked me. Soon, the speakers’ bureau began sending me out more often. I told my personal story to live audiences all over the country. Just a few, at first, and then more and more, as time went on. I spoke at corporate conventions, colleges, universities, governmental agencies and teacher conferences. I even gave a keynote address at NASA’s Kennedy Space Center.

But of the 1,000-plus speaking engagements I’ve had since that very first one in Kansas, the one that stands out as the most personally rewarding was on in October 2003, when I was invited to my old high school to give a talk to a small class of about 20 students who had learning disabilities.

I greeted the class of ninth- and tenth-graders and began to share my story. I didn’t sugarcoat it. I gave them all the details. I told them what it was like for me, 20-some years ago, sitting in their same seats. I talked to them about their futures and the fact that, if they have a dream, they should never allow anyone to take it away.

Driving home, I knew I had helped to bring about the change I had witnessed. But most of all, I realized the time I put in as a student at East Juniata had not been in vain. It had made me resilient and helped me find my voice. theamericanstoryteller.com

Nelson Lauver

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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

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