06 2011 UL 5 /J UN J ANDEL M OWIE H 70989 35509 $4.99 ISSUE 06-11 0 $4.99

MAGAZINE VOLUME 2011 HOWIEMANDEL JUN/JUL THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY ABILITY 3 MANAGING EDITOR Gillian Friedman, MD

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

EDITORIAL DEVELOPMENT DIR. Pamela K. Johnson

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

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

EDITORS Dahvi Fischer Renne Gardner Regina Hall Molly Mackin Howie Mandel interview p. 40 Josh Pate David Radcliff Denise Riccobon, RN 6 HUMOR THERAPY — Jockey: A Horse Tale (Pt. 1) Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder 8 WIN WIN — Tickets to Ride HEALTH EDITORS Moses deGraft-Johnson, MD 10 ASHLEY’S COLUMN — Let the Racing Begin! Larry Goldstein, MD CONTRIBUTING WRITERS ENATOR ARKIN Hamill p. 18 Ashley Fiolek 12 S H — Where Are the Jobs? Paralympic Games Beijing Gale Kamen, PhD Laurance Johnston, PhD 14 DRLC — Rescue 411 Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle 16 BAD BOYS — United Airlines, H&R Block Paula Pearlman, JD Allen Rucker Kristen McCarthy Thomas 18 HAMILL — Bodyslamming a Theater Near You Betsy Valnes WEB EDITORS Recipes p. 38 FRANKENTONGUE — How I Licked Tongue Cancer Music Within Stan Hoskins 22 Mary Shafizadeh

GRAPHIC ART/ 28 PARALYMPICS — A Leg Up on the Competition ILLUSTRATION Scott Johnson Melissa Murphy - Medical Illustration 32 UNITED CEREBRAL PALSY — The Power of Play Anna Blagovidova

PHOTOGRAPHY 35 ZAMBIA — Advocates for African Children’s Rights Nancy Villere— CrushPhotoStudios.com

38 RECIPES — Tasty, Cancer-Fighting Dishes Zambia p. 35 TRANSCRIPTIONIST

ABILITY’s Crossword Puzzle ABILITY’s Sandy Grabowski 40 HOWIE MANDEL — Showered with Riches DIRECTOR OF BUSINESS AFFAIRS Ryan Brown, JD

52 DYSLEXIA — Tangled Up in Blues MARKETING/PROMOTIONS Kayla Cherry Stan Hoskins 6O CROSSWORD,EVENTS & CONFERENCES Andrew Spielberg CONTENTS

Ashley Fiolek p. 10 ABILITYJOBS.COM ABILITYMAGAZINE.COM Casey Mims

ADVERTISING DISTRIBUTION CORPORATE SHIPPING EDITORIAL For advertising Warner Publishing Services 8941 Atlanta Ave. [email protected] information e mail A Time-Warner Company Huntington Beach, CA 92627 [email protected] Faxon - RoweCom Library Tel 949.854.8700 or call Services TTY 949.548.5157 NON-PROFITS 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 ABILITY Awareness Swets Blackwell PUBLISHER/EDITOR-IN-CHIEF Chet Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, not be those of ABILITY Magazine PO Box 10878, Costa Mesa, CA 92627; Howie Mandel - Jun/Jul - 2011 Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © 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 Mis- ter Ed, starring a palomino horse who could talk; and, it wasn’t unusual to find the boy pos- ing 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 On his tenth birthday, the boy’s father took the horses for more than 25 years. But Felipe’s dad was little munchkin out to the barn for a surprise. Standing never considered a success, perhaps because of the in front of a new colt, his father said: names he chose for his thoroughbreds. (“Laggin’ Behind,” “Trottin Too Much,” and “Too Lazy To Run” “Happy birthday, son.” were just a few of his brainchildren.) Even though the horses more than lived up to their names, the stables “A brand new horse!” Felipe exclaimed. were not well-known, and the elder Felipe yearned to be taken seriously in the racing world. He longed to be a “No, the horse is mine. But this whip is for you,” Felipe’s somebody who merits mint julips at the happy-hour father said, handing the whipping stick to the child. price, any time, day or night. The whip was not actually new. Felipe had kept it from His son would be his ticket to fame, he believed. He his early S&M club days, always vowing to get back would be groomed to be a jockey. A great. Big. Little. into that hobby when time permitted. Jockey. The boy loved the riding crop, even though the colt did The elder Felipe had a special relationship with his son, not. From morning ‘til dusk, Felipe rode the colt because he had raised the boy all alone after his wife through the meadows, racing the wind until the wind was killed in a freak incident years earlier. The wife had lost. Sometimes he would gallop so fast that he would walked in on her husband as he was lip-locked with one literally break wind. Later, he would find a quiet place of his prized fillies. According to the elder Felipe, this to lie down, stare at the clouds and daydream about win- was all a misunderstanding. Man and beast were simply ning the Triple Crown. sharing a carrot—getting their antioxidants in, if you will. But when the wife confronted the filly, an argu- As the boy grew older, he began to feel inferior about his ment ensued. The mamacita fired off a tamale missile at size. Kids at school teased him, calling him nasty names the home-wrecking horse, which struck the animal in like Short Bread or Minnie Meat. Some even taunted him the nose. Ultimately, the filly got the last whinny, how- by leapfrogging over his head. It wasn’t long before the ever, as the woman was later found in a heap, with a youngster developed a Napoleonic complex, attempting huge hoof mark stamped on her forehead. The horse to lord over others to compensate for his small stature. He was put out to pasture, while the wife was buried in a became a ruthless tiger, attacking anyone who mocked pasture, after a brief eulogy by the local pastor. his size. One day, his English teacher asked:

Little Felipe’s love for horses developed early. As soon “Do you know what a tall tale is?” as the boy could walk, his father crafted a wooden horse’s head and stuck it on a broomstick. Both he and “It’s a story,” was Felipe’s reluctant reply. the child would run around the barn with the contraption between their legs, each making galloping noises. “That’s the short answer, but I’m looking for a little Afraid that his boy would grow too tall to be a jockey, more,” the teacher said.

6 ABILITY Felipe sat quietly as his insecurity mount- ed. 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 bat- tered, 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 jock- ey, 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. in for Our Vets The horse darted off like a spooked cat. The jockey had never felt such exhilaration. The wind whipped Recently, ABILITY Magazine joined forces with Window through his hair as if Felipe had just eaten a York World, the nation’s largest replacement-window company, Peppermint Patty. Suddenly, the horse stopped on a to sponsor the “Win-Win” Competition. The month-long dime, causing the tiny young man to fly off its back promotion attracted more than 4,700 entrants, from which and land face first in a steamy mound of manure. six lucky semifinalists were chosen to attend the 100th anniversary of the legendary Indianapolis 500. In a fit of rage, the jockey leaped to his feet, squar- ing off with the cantankerous animal. “What’s up As in years past, winners were selected by region—North- with that?” the boy asked. east, Southeast, West, Central, and Great Plains—but this year’s competition added a new category: one specifically The horse rocked his head back and snickered as it for Wounded Warriors, active or retired military veterans. flashed its big pearly teeth, which really set the little Nearly 1,000 active duty or US military veterans threw guy off. Felipe felt he was being dissed by the horse, their dog tags into the ring, a point of pride for ABILITY so he slapped the bit out the beast’s mouth. The two Magazine’s Editorial Development Director, Pamela K. were now nose to nose, staring one another down. Johnson.

“Pig,” the jockey snapped, just before the horse “Veterans have sacrificed so much for this country,” John- snorted and then pushed the jockey back with his son said. “We at ABILITY Magazine are proud to have lob- muzzle, knocking him on his itty-bitty keister. bied for a sixth category in this contest, one that allows a Felipe stood up, his tiny chest heaving. He grabbed veteran to enjoy the race and be a part of a great Memorial the hairy monster by the ears, wrapping his little Day celebration. It seems a fitting tribute to their service.” legs around its neck. The horse didn’t appreciate the intimacy. In fact, a feeling of claustrophobia This year’s Win-Win semifinalists were veteran Gary washed over him, and he darted off, sporting a Boltenhouse of Chillicothe, OH; Kathryn Geiger of Tem- jockey necktie. peranceville, VA (Northeast); Carlos Hayes of Hueytown, AL (Southeast); Kristi Fisher of Thornton, CO (West); The bumpy ride caused the jockey to lose his grip Geralyn Enriquez of Houston, TX (Central); and Sue on the horse’s ears, but luckily his ankles were Drake of Olathe, KS (Great Plains). locked around the animal’s nape. The only hitch was that now his head was dragging against the Each semifinalist and a companion received complimenta- ground. ry travel, accommodations and tickets to the Indianapolis 500 in Indianapolis, IN, along with VIP access to other “Whoa, boy!” the little guy screamed as grass Memorial Day weekend festivities. If the Window World- clumped in his hair. The frazzled horse continued sponsored car, driven by John Andretti, had finished in to rip through the forest, dash over the rocks, leap first place, one lucky semifinalist would have gone home over the logs and splash through the muddy stream, with $1 million. But for all involved, the opportunity to as the boy’s head—ba-dump, ba-dump-dump— attend the race proved its own reward. took quite a battering. The rampage finally ended at a stream, where the horse stopped for a little liq- “As Window World, ABILITY and Andretti Autosport cele- uid refreshment. Felipe fell into the river and was brated the 100th anniversary of the Indy 500, we were thrilled swiftly carried downstream, tossed wildly, to and to have six very special VIP fans with us to share in the fro, through the rushing rapids. excitement,” said Dana Deem, president of Window World.

Find out what happened to Felipe and the ratty “ABILITY, the world’s leading magazine for health, dis- horse in Part II of “The Jockey” ability and human potential, will continue to seek out part- by Jeff Charlebois nerships that support our community, as well as spread our “Ham on larger message of inclusion,” said Johnson. a Roll” windowworld.com

8 ABILITY ABILITY 9 y racing season has officially started, so all of to Colorado! As if that weren’t enough, the X-Games my practice and training is behind me, for now. are right in the middle of everything! I’m really looking My only focus is on my racing! forward to those.

The time has really flown since I started practicing for Hope to see you all at the races! 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 inter- views for different magazines—including the Red Bul- letin, which is a Red Bull magazine from Europe that is now being published here in the United States!

Since my last column, I’ve also done a crazy photo shoot for one of my new sponsors, Cycle Nano. Partici- pating 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 profes- sional 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 fly- ing 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 ashleyfiolek.com

10 ABILITY ABILITY 11 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.

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 WE MUST IMPROVE OPPORTUNITIES what they could do. Too many Americans with disabili- FOR PEOPLE WITH DISABILITIES ties remain held back by public or private fears, myths and stereotypes associated with their differences. Dear ABILITY readers, I remain committed to doing everything in my power to Recently, I gave the keynote address at the US Chamber advance the four important goals set forth by Congress of Commerce’s Corporate Disability Employment Sum- with the establishment of the ADA: equality of opportu- mit in Washington, DC. During my talk, I sounded the nity, full participation, independent living, and econom- alarm on a disturbing trend: more than two thirds of ic self-sufficiency. Americans with disabilities are without a job, and adults with disabilities are leaving the labor force at more than My central priority, as we enter the third decade since 10 times the rate of adults without disabilities during implementation of the ADA, is to improve employment this recession. This is unconscionable. opportunities and outcomes for people with disabilities. Thanks in large part to the ADA and this country’s spe- I asked the CEOs in attendance to help fulfill the cial education laws, we are now producing the best-edu- promise of equality made by the Americans With Dis- cated people with disabilities in the history of the Unit- abilities Act (ADA), by raising the number of workers ed States. And yet, while the majority of Americans with disabilities in the workforce to six million by the with disabilities would like to be working, more than year 2015. Having grown up with a deaf older brother, two thirds are not. Frank, I am particularly proud to have played a leader- ship role in crafting the ADA. My involvement in that In the last two years alone, unemployment has proven endeavor has been a highlight of my career. disproportionately higher for workers with disabilities than for workers who don’t have them. The size of the Like a lot of people with disabilities of his generation, disability workforce has shrunk from 5.3 million in my brother experienced discrimination and faced low March 2009 to about 4.9 million workers this year, expectations. It took a long time for him to find a job according to data from the Bureau of Labor Statistics best suited to his abilities. Eventually, he landed a job at (BLS). Compared to broader labor-force trends, this a manufacturing plant in Des Moines, working for Dela- drop illustrates that more than one in three American van Corporation. Mr. Delavan had decided he wanted to adults who have left the labor force in the last two years hire people with disabilities, and my brother was eager have been people with disabilities. to work for him. Although this disturbing trend has not received much Frank became a drill press operator, making nozzles for attention from policymakers or from the public, it car- jet engines. It was a great job, and there was never any ries with it a momentous budgetary and social cost. As doubt Frank took enormous pride in his work. more Americans with disabilities leave the workforce,

12 ABILITY Since 1995 the number of applications for Social Security Disabil- businesses. If federal policies stand in the way of these ity Insurance benefits increases, growing from an aver- efforts, I want to hear about them. Making a measur- age of 200,000 new applications per month at the able impact on disability employment numbers is one beginning of 2008, to roughly 250,000 per month by of my top priorities, and will remain so as long as I am the end of 2010. in the Senate.

If we work together, I believe we can increase the num- ber of adults with disabilities participating in the labor Sincerely, force to six million over the next four years. An expan- sion 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. Senator Tom Harkin

When I spoke to CEOs at last month's US Chamber’s Senator Tom Harkin (D-IA) is Chairman of the Disability Summit, I asked for ideas and collaboration Senate Health, Education, Labor and Pensions Committee so that our policies might produce real results on the ground—results that mean jobs for people with disabil- harkin.senate.gov ities and a strong, talented and loyal workforce for

ABILITY 13 failing to incorporate the needs of people with disabili- ties 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, indi- viduals with disabilities are disproportionately vulnerable to harm in the event of an emergency or disaster.”

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 disabil- ities. Accessible emergency shelters, plans for providing services and medication at shelters, accessible trans- portation and evacuation assistance, as well as commu- nication services that are available and accessible to people with a wide range of disabilities are minimal or s recent events have demonstrated, natural dis- entirely absent. asters can have a particularly devastating—and, in many cases, lethal—impact on the disability com- A recent series of disasters, including a tsunami in Japan munity. Despite the best efforts of the US Civil Rights and tornados and flooding across the Midwestern and Divisons, this country is arguably no more prepared to Southern United States, underscores the need for better meet the needs of residents with disabilities during a emergency preparation. During Hurricanes Katrina and disaster than it was during Hurricane Katrina nearly Rita, many people with disabilities, including a number six years ago. of seriously ill seniors, were left to die because of a lack of planning for their emergency care. In the aftermath of Katrina, Benilda Caixeta, a quadri- plegic resident of New Orleans, tried for two days to These and other such tragedies prompted the February seek refuge at the local Superdome. Despite repeated lawsuit, a legal effort to make future natural disasters phone calls to authorities, she was found dead in her less hazardous for people with disabilities. Marcie Roth, apartment, floating next to her wheelchair. No one had executive director of the National Spinal Cord Injury come to her aid. Association, hopes that February’s federal ruling prompts other cities, counties and states to examine their own lev- Though a definitive number of people with disabilities els of emergency preparedness and avoid or mitigate loss killed by Hurricane Katrina remains unknown, a 2006 of life among their populations. White House report revealed that 71 percent of the stor- m’s 1,330 victims were more than 60 years of age. This “Benilda need not have drowned,” Roth told the US data suggests people who needed special care suffered House of Representatives Bipartisan Disabilities Caucus disproportionately in a time of crisis. in 2005, after she had personally placed calls to prompt the New Orleans woman’s evacuation during Katrina. In February 2011, a Los Angeles federal court reached a “People with disabilities are not in good hands.” landmark decision that carried national implications: the City of Los Angeles was found to have violated federal by Paula Pearlman law, including the Americans with Disabilities Act (ADA), by failing to meet the needs of residents with Paula Pearlman is the executive director of the Disability Rights disabilities in planning for natural and other disasters. Legal Center, and a visiting associate professor of law at This recent ruling is the first such decision in the United Loyola Law School in Los Angeles. States. disabilityrightslegalcenter.org The lawsuit—Communities Actively Living Indepen- dent 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, pro- vided under the ADA and other federal and state laws, by

14 ABILITY ABILITY 15 he Equal Employment Opportunity Commission potential, which is something we should all expect and (EEOC) enforces federal laws prohibiting dis- hope for our children.” crimination in employment. The following are Trecent cases brought about from the EEOC. The ADA requires schools and other public entities and businesses to allow individuals with disabilities to be WELCOME MAT FOR MADISON accompanied by service animals. Service animals can- not be denied access except in rare instances in which An Oregon school district has been ordered to allow their actual behavior poses a direct threat to the safety of Jordan “Scooter” Givens to bring his trained autism others or results in a fundamental alteration of the service dog, Madison, to school with him. nature of a program.

For nearly three years, Scooter’s parents’ efforts to get ada.gov nh.gov/disability/information/index.htm permission for Madison to accompany Scooter to hsd.k12.or.us class in the Hillsboro School District had been fruit- less. But after US Attorney Dwight Holton and a UNITED AIRLINES DIPS WINGS senior attorney from the Civil Rights Division met with the district’s superintendent, the school agreed to United Airlines will pay $600,000 to a group of reserva- allow Scooter to be accompanied by the service dog tion agents with disabilities to settle a federal lawsuit. for a trial period. A highly trained animal, Madison The complaint arose from employees who charged that provides important assistance to Scooter, recognizing the carrier violated the ADA by refusing workers with when the student is about to behave in a manner that disabilities reduced hourly schedules as a reasonable might endanger him, and then distracting him to pre- accommodation, according to the EEOC. vent the behavior. The deal also entails that United end its blanket policy “Service animals assist students with disabilities across against reduced hourly schedules, while providing the United States every day of the school year without training to staffers who administer the company’s rea- incident,” said Thomas E. Perez, an attorney for the sonable accommodation process, according to the Civil Rights Division. “Fears, generalizations and terms of a three-year consent decree approved by the stereotypes are simply insufficient to deny access to a court. student’s service dog, and the department will continue to provide school districts with technical assistance to Prior to 2003, United permitted reservations sales and make sure they comply with the Americans with Dis- service representatives to work reduced schedules to abilities Act (ADA).” accommodate employees’ various disabilities, includ- ing multiple sclerosis, carpal tunnel and myasthenia “Kids with autism deserve the same opportunity as the gravis. By suddenly abolishing their long-standing rest of us to grow and learn,” said Holton. “Scooter’s practice and policy, United required all reservation service dog will help him grow up to meet his full sales and service representatives who could not work

16 ABILITY full-time either to retire or to go on extended leave. or hard of hearing for all H&R Block offices nation- Once the leave expired, the employees were terminat- wide, post the policy on the company website and in ed, a practice that violated the ADA, the EEOC noted. employee manuals, and distribute the policy to current and new employees and contractors. “A sweeping policy that disregards individual circum- stances doesn’t give someone like me a chance to do H&R Block will pay $5,000 in damages to the individ- my job,” said one employee who maintained a ual who filed the ADA complaint, as well as a $20,000 reduced-hour schedule for 23 years prior to the policy civil penalty. change. “I took my case to the EEOC, and I’m glad to know that United is going to stop its blanket policy on The ADA prohibits discrimination against customers work hours.” with disabilities by businesses that serve the public. These entities must provide equal access to customers Michael Baldonado, an EEOC representative, agreed who are deaf or hard of hearing, as well as to individu- that decisions about disability accommodation must be als who are blind or have low vision. made on a case by case basis. “A blanket policy that takes options off the table by setting minimum work hrblock.com hours not only violates the ADA,” Baldonado said, “it usdoj.gov also may have a negative impact on the company’s morale, productivity and bottom line.” SCHOOLS LEARN LESSON

With 52,000 employees worldwide and nearly 3,000 Nobel Learning Communities (NLC), which operates flights a day, United Airlines is one of the largest inter- a nationwide network of more than 180 schools, has national carriers in the United States. agreed to pay $215,000 to settle a discrimination lawsuit brought by the Justice Department. The com- united.com plaint alleged that NLC violated the ADA by exclud- eeoc.gov ing children with disabilities from its programs. The children in question had autism spectrum disorder, H&R BLOCK HAS TO PAY Down syndrome, Attention Deficit Hyperactivity Dis- order, and global developmental delays. NLC denied H&R Block Tax Services and its parent companies must the allegations. pay $25,000 in damages and penalties because they failed to offer equal access to services for individuals “It is illegal, under the ADA, to discriminate against who are deaf or hard of hearing at more than 11,000 children with disabilities,” said Thomas E. Perez, an owned-and-franchised offices nationwide, according to attorney for the Civil Rights Divison. “Just like public the US Justice Department. schools, private schools must make reasonable modifi- cations of policies to permit children with disabilities to The settlement resolves an ADA complaint filed by an participate fully in the programs they offer. This agree- individual who is deaf. It requires H&R Block to furnish ment ensures that children will not be denied quality appropriate auxiliary aids and services as necessary to preschool and other educational opportunities based afford a person who is deaf or hard of hearing equal upon their disabilities.” access to the goods, services and accommodations made available to others who patronize the company. NLC has adopted and will implement a formal policy to ensure it will operate its programs, facilities, and ser- “By signing this agreement, H&R Block has affirmed vices in a non-discriminatory manner and in compli- its commitment to providing effective communication ance with Title III of the ADA. The company will also with people who are deaf and hard of hearing not only publicize its disability non-discrimination policy to its at their tax-preparation offices in San Antonio, where principals, teachers, and other staff at all facilities with- the complaint originated, but at their locations across in its network. Finally, it will post this information on the country,” said Thomas E. Perez, an attorney for the its main website, as well as on its member schools’ Civil Rights Division. “The agreement will ensure that websites. individuals who are deaf or hard of hearing have equal access to tax-preparation services.” The company operates under a variety of names, includ- ing Chesterbrook Academy, Merryhill School and Ever- The settlement requires that H&R Block provide green Academy. Its campuses, which range from such auxiliary aids and services as qualified sign- preschool to high school, can be found in more than a language interpreters when needed to ensure effec- dozen states around the country. tive communication. nobellearning.com The company must also adopt and enforce a policy on ada.gov effective communication with individuals who are deaf

ABILITY 17 director yells “Cut!” as his deaf actor continues to bution deal that could give their film maximum expo- run up the street, the actor unaware the scene is sure. Through it all, the filmmakers remain optimistic over. This is a common occurrence on the set of about Hamill ability to connect with viewers. of Hamill, a film for which members of the hear- ing and deaf worlds collaborated to create a pro- “The next several months should solidify it,” Kostbar ject celebrating both. said. “We want to make sure our efforts are done proper- ly, not in a rush. We want to partner with a distribution “We wanted to make sure deaf culture was portrayed company and see what this film can do for audiences at properly,” said Eben Kostbar, a writer and producer on large: for deaf people, for hearing people, and for deaf the film he describes as “a classic sports underdog story, education.” in which the lead character overcomes many challenges to reach his ultimate goal.” The project is based on the life of Matt Hamill, a star wrestler for the Ultimate Fighting Championship (UFC) After wrapping production shortly before last fall’s AFI who grew up deaf in the 1970s, before deaf education Festival—where it won a $5,000 award—Hamill has was a well-established known. Raised, in part, by a picked up accolades at the Philly Cinefest, as well as at grandfather who wanted him to be mainstreamed, Hamill the Cleveland, Miami and Florida Film Festivals. At hung with a hearing crowd, and learned to read lips. But each screening, the film’s creators seek to keep the buzz when he attended college at Purdue University, the unfa- revved up, as they close in on a coveted theatrical distri- miliar environment proved a poor fit for him socially.

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

It was not until Hamill transferred to Rochester Institute school, and most of the faculty was deaf, all of the stu- of Technology (RIT), and made his way solidly into the dents were deaf, and we were encouraged to ‘turn off our deaf community, that he became more comfortable with voices, and try to sign for the weekend.’” himself and with getting involved in student activities. His newfound willingness to participate—as well as a Their immersion in life without sound not only helped stint as a bouncer—prompted Hamill to try out for the Kostbar and McKelheer better understand the world wrestling team, where he emerged as a real contender. about which they were writing, it also helped them build trust with Hamill. Though Kostbar admits he’d original- “He was the first deaf person to actually win an NCAA ly thought, “here’s an opportunity to write and produce wrestling championship, three years, back to back,” said a vehicle for myself,” he soon realized his plan to play Kostbar, who was drawn to the story after watching the role of Hamill didn’t feel quite right. Hamill on The Ultimate Fighter, a reality TV show. “As I went further along, and consulted with deaf people, Though he trumpets the uniqueness of his project, Kost- I realized that [playing Matt] was not the way to go,” bar knows that deafness is not foreign to the feature film Kostbar said. “Deaf actors are not really given that many marketplace. Citing multiple influential films about the opportunities. I wanted this project to reach people, to deaf community that have come before his own, Kostbar inspire people, and so I realized I needed to step away points to 1986’s Children of a Lesser God, for which deaf from this role.” actress, Marlee Matlin, won an Academy Award. But Kostbar says that movie remains controversial in the deaf Kostbar ultimately decided to take a lesser part in the community because Matlin voiced everything she said, film—that of Hamill’s assistant coach at RIT—so he instead of using American Sign Language (ASL). Hamill, could create an opportunity for a deaf actor to take the Kostbar points out, features a great deal of signing and is lead. Kostbar hired a deaf co-producer and set about also captioned, allowing hearing and deaf audiences to coming up with fallback plans for circumstances in enjoy the film together. which walkie-talkies and yelling “Cut!”—standard operating procedures on a typical shoot—would fail to While researching Hamill, Kostbar attended one of the bring the desired results. wrestler’s many speaking engagements. During one such event in Fremont, CA, Kostbar and co-writer Joe McK- For much of the production, Kostbar avoided entering elheer stayed for the whole weekend, where the experi- into a formal contract with Hamill, because he didn’t ence proved eye-opening. want the star athlete commited to the project until he was sure Hamill would be comfortable with the results. The “Before that, I had had very little exposure to deaf peo- men settled, instead, on a handshake agreement. Shortly ple and culture,” Kostbar said. We were at a K-12 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 On set, director Oren Kaplan faced an unusual set of heart of the story” while showing passages to Hamill as challenges in bringing the film to life. Deaf actor Rus- they felt each was ready to be read. sell Harvard, who was cast in the role of Hamill, had never before wrestled, and needed to be taught the ins Throughout the creative process, Kostbar and McKel- and outs of life in the ring. Multiple highly physical heer traded responsibilities, back and forth: one writing takes, along with the effort required to communicate new material, and the other trying to match it in tone with a hearing director, sometimes proved exhausting and quality. The script went through 75 rewrites before for the young lead. its collaborators were satisfied. Finally, they held their collective breath as Hamill read the finished product. Today, as they seek a theatrical release, the team behind Hamill, his friends, and his family were all pleased. Hamill has secured deals for video-on-demand, as well as DVD distribution. The filmmakers plan to tour their With the script complete, the team turned its focus to movie throughout deaf residential schools, (two of budgeting. They set the cost of making the film at some- which are located in every state of the union) as well as where south of $5 million, which left them with the unen- on deaf cruises and at deaf expos. Hamill himself plans viable task of searching for investments during a reces- to attend many of these events, lending his star power to sion—a particularly challenging undertaking, as the pro- the marquee. ject boasted no stars. Though having begun his career as an actor, Kostbar The film’s subject matter was also of little help: the continues to evolve as a writer-producer. Film Harvest, premise of a deaf wrestler who learns to accept himself his production partnership with McKelheer, produced didn’t scream summer blockbuster. But the team 2009’s Godspeed, which was awarded the jury prize at CineVegas Film Festival and is currently available on remained resolute and hopeful, as Hamill’s star contin- DVD and iTunes. The company is producing other ued to rise in the UFC. Though, for three years, several films, as well, including Free Samples (a dramedy fea- prospective investors failed to back the project, Kostbar turing Jesse Eisenberg of The Social Network) and The and McKelheer finally knocked on the right doors: those Thompsons, a vampire thriller. of the famed Farrelly Brothers (whose films There’s Something About Mary and Stuck on You have been In the process of pulling together Hamill, the film- praised and criticized for their humorous portrayals of makers learned a film is not unlike a wrestler—some- disability), and of former football giant Jim Kelly of the times it flipped them or pinned them to the mat. But Buffalo Bills. Investments from such high-profile names by crafting the right script, getting a great cast, and helped to make the bumpy road of filmmaking a little reining in the actor who’s about to blitz into the next smoother. zip code, it ultimately proved possible to put the film in check. Hamill even invested in the project himself, which came by Pamela K. Johnson as little surprise to his collaborators. “He wanted to see the film get made,” Kostbar said. “He’s a humble, easy- hamillthemovie.com going person. When he goes to signing events, and com- mits to be there a certain amount of time, he always stays longer.”

20 ABILITY 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 Gener- al warnings? Okay, they are, but those warnings are usually about the dan- gers 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 get- ting. I will be sedated for some time, I’m told.

There is an old joke about the reason n the final days of 2010, Ran Michels, a retail store patients are called patients. I don’t manager in Southern California, had half of his remember the whole thing, but the point is that you tongue removed. It was then reconstructed using must be patient while waiting for your doctor to get any- skin and flesh from other parts of his body. The thing done. Or maybe the joke was about how long you following is Michel’s journal of his battle against had to wait for your doctor to even see you. Who among cancer and his experience with treatment. us hasn’t had the irritation of making a 9:30 doctor’s appointment, only to sit in the waiting room for 45 min- utes to an hour? A CRASH COURSE IN CANCER Like starting a new job, being diagnosed with cancer On a typical doctor’s visit, a nurse moves me to the entails having to learn the lay of the land. It’s only been examination room, and on the way down the hall I notice a couple of weeks since my diagnosis, so I’m no expert. three or four other patients, waiting. I briefly make eye I do, however, gather more information every day. If contact with them, and they roll their eyes as if to warn you or someone you know was recently diagnosed with me that I’ve now entered the real waiting room. cancer, please feel free to benefit from my knowledge. (Spoiler alert: if you drink alcohol, you might not like Another 45 minutes pass, and the nurse pops in to apol- one of the lessons I had to learn). ogize and let me know the doctor will be with me “shortly.” I begin to wonder if the doctor is even in the Day one. Doctors grill me: “How did you get this building. I become irritable, and consider calling my job growth?”, they ask me over and over again, trying to to let them know that I’ve been kidnapped by the med- trick me into different answers. This question-and- ical profession. I expect that sort of call will be met with answer process is not unlike those “surveys” you’re sympathy, because everyone in the world, including given when applying for a retail job—the surveys that bosses, has been there and completely understands. peck away with such ridiculous questions as, “if your grandmother was shopping at an art store and put a tube Finally there is a quiet rap on the exam room door, and of paint into her purse, would you say anything?” my doctor appears, all cheery as if I haven’t been wait- ing more than two or three minutes. He asks why I’m When you have cancer of the tongue, doctors ask a bunch there, listens to my lungs, and runs from the room with of different questions to find out how much you really instructions to pick up a prescription from the nurse. smoke and/or drink, since alcohol is the number two Time spent waiting: all morning. Time spent with doc- cause of oral cancers. I don’t drink all that much, even tor: five minutes. though I make amazing booze balls! (I rarely eat them, though. I didn’t drop almost 90 pounds by scarfing down But this is no typical doctor’s visit. If your five-minute plates of pastries filled with tequila and cognac!) encounter with the doctor reveals something “trouble- some,” you won’t be waiting around doctor’s offices

22 ABILITY anymore. You’ll be ushered right past the other jealous I’m having a full-blown anxiety attack. Talk yourself off patients, who would in no way trade places with you if the ledge, I keep telling myself—and, little by little, it’s they knew the real reason for your VIP treatment. The working. I have a wonderful care team. My partner, doctor keeps his appointment times and spends as much Ken, is amazing. I have a great surgeon, whom I’d time with you as needed, answering all of your ques- Googled to check out. My friends and family are stand- tions. You suddenly find yourself longing for the days ing by, to provide whatever I need, whenever I need it. of sitting around the waiting room, bored and flipping So, really, what is the problem here? through a mangled copy of Better Homes and Gardens. It’s sort of like that nagging feeling you get when you’re I know time is of the essence when dealing with cancer, driving to work and you begin to wonder if you’ve left but it would be nice to have just a moment to take a breath the stove on—times 1,000! and think. Now I don’t have the patience I developed over the years, waiting on doctors. Now I’m just a patient. This is my life we are talking about here, and I am fac- ing a 10-hour surgery, during which half of my tongue “THE BEST LAID PLANS...” will be removed and replaced with a flap of skin and fat We all know this saying, and yet we go on, day-by-day, from my wrist. Oddly enough, I’m not afraid of the continuing to plan. My plan was called “Sexy by 50.” It surgery. I’m afraid of the anesthesia. started out based on something that my dear friend, Cynthia, once said: don’t allow yourself to turn 40 and The symbolic “stove” I have left on represents the loose not be sexy. Well 40 had come and gone, and I hadn’t threads of my life. The possibility I could die tomorrow heeded her advice. I found myself almost 45 years old, afternoon because some careless anesthesiologist is day- and 90 pounds overweight. I made a promise to myself dreaming about his date from last weekend freaks me that I would not turn the big 4-5 weighing the big 2-0-0. out about all of the things I might have left unsaid.

Weight Watchers helped me shed the weight. Still, sexy I love to talk. If my mouth were a car, I would have a managed to elude me. Sure, I was in the best shape of pile of tickets for cutting people off, driving over the my life, but I just couldn’t manage to see myself as speed limit, and running red lights. But I am faced now sexy. Being diagnosed with cancer didn’t help. There is with the truth that there were many times when, instead nothing sexy about that! Having cancer and being sexy of listening to what someone was saying to me, I con- at the same time is just not doable. cocted what I was going to say next to him. When I cut Ken off, which happens pretty much daily, he gets The light at the end of the tunnel for me is this: I’m not pissed and stops talking to me. But for some reason, yet 50, so I’m sticking to my plan to be cancer-free and that hasn’t really corrected my behavior. 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 If I consider my condition from a metaphysical standpoint, I those with truly diverse tastes, I’ll have a cute, two-tone think I have cancer of the “talking too much and listening tongue. Hey, I’m going to make this work! too little” variety. What better way for the universe to force me to listen than to still my tongue for a while? Listening is The reality is, sexy is a state of mind. I’m not there yet, a skill I plan to learn over the next several months, because but I get glimpses. I saw myself in a mirror at the theater not learning it could have serious consequences! last month and realized I looked damn good. I’d call that a step in the right direction. Years ago, while taking to my Every major event, no matter how difficult, has the dad, I’d informed him that I had discovered I was mascu- potential to make you a better person. A cancer diagnosis line. “How’d you discover that?” he asked. is no different. I choose to keep my eyes and ears open, in the hope that I’ll learn whatever lessons are in store “I changed my definition of the word,” I had said. I was for me. I intend to use that information for its highest smart enough in my 20s to realize there were different good and be transformed into my new, higher self. types of masculinity, and now, in my late 40s, I realize there are different types of sexy. I’m going with it. 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 On Monday, when they remove the tumor—and the half them I got a raise at work, or that I just bought a new of my tongue in which it’s embedded—I will no longer car. The list of people I want to phone and tell how I have cancer! Now that’s sexy! And survive cancer I feel about them grows and grows and grows, but my will. So, in a couple of years, when you see this hand- time to talk to them has run out. How will Ken ever some guy with green eyes, spiky grey hair and a slim know I have cherished every single second of our rela- physique, you just might say: Damn, he’s sexy! tionship, even when I wanted to kill him? How will Steve and Ruthie, Ken’s mom and dad, know they have COLD FEET become my parents too? How will my friends know It’s just 18 hours until my surgery and, like many people how cool they all are? And how will my dad know I facing a life-changing moment, I have cold feet. Actually, could have not asked for a better father?

ABILITY 23 WHAT THEY SAY, WHOEVER THEY ARE though I’ve come to understand that this is a luxury. It’s post-surgery, and I’m typing this with a splint on None of them spoke English as their first language, and one arm, since my arm is where doctors got the raw all had heavy accents. (And there I was, with no tongue, materials for my new 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 People refer to cancer as the “C” word. We say cancer is morphine drip. After my dear friend Theresa paid a visit frightening. We drive past hospitals, only knowing what and turned into a black foam demon, I decided to get off we’ve seen on Grey’s Anatomy. We live our lives in fear, the drugs. But now the pain is freaking me out. not speaking the “C” word, lest we bring a pox upon our house. We give to cancer charities, we do walk-athons— TOUGH LOVE and for what? I stopped pushing the little button and requested to be taken off all morphine, altogether. The light started to I hate to admit this, but I always thought about breast shine through the corners of my drug haze. Nurses, cancer as a little “lump” that you could just cut out. who had hovered around me during my first 48 hours, What’s the big deal, right? Now I feel as if I have paid were nowhere to be found once they’d removed the the high price for both my lack of compassion and my catheter. Regular suctioning of the tracheotomy that ignorance. had been installed in my throat drummed up images I had vowed to forget during my mother’s last hours. When the doctor first told me what I was facing, I want- ed to say, “Get it out. Move.” That’s how I went into the I couldn’t help but remember my mother’s helplessness, treatment process: eager. Eager for the whole thing to be and the weakness and fear she had felt, when she was over. Today, I probably would have lingered, gone to a not able to breathe for even a couple of seconds. Finally, beach and cleansed myself in the Pacific. Gone to New Lew, one of my nurses, informed me that I needed to get Orleans for a quick beignet and a soothing stroll along up and walk. My road to recovery was going to be the Mississippi River. There are about a thousand things walked by me alone. Lew let me know she was busy, I should have done, because in my ignorance I didn’t and that I, too, needed to get busy healing myself. She know the truth of what was about to happen. Here’s the also mentioned that when she had undergone a serious real deal: 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 amaz- ingly, no actual pain. Doctors removed half of my tongue and replaced it with a graft, which is basically a tongue created out of other On my fourth night in the hospital, I was placed in my body parts. After surgery, I had two IVs. I remember the own room, just down the hall from the intensive care unit. pain of coming back to consciousness. Hey, you’re hurt- The nurses in my new room ran the gamut from sweet to ing me. Why are you hurting me? I remember my bed simply a warm body in a uniform. I actually preferred the being rolled around a maze of walls and into an eleva- “bare minimum” nurses: they ignored the order for assist- tor. The volume of the ride was cranked up by the hallu- ed walks and let me walk on my own. I figured that there cinogenic effects of the morphine. (They need to come were wheelchairs just around each corner, and that I up with some pain medications that don’t have that could always have a seat if I ran out of breath. effect.) This was a doubly bad trip. My rude awakening came when I failed to remember Each new corner was a new entity, and sometimes a that I was on a liquid diet—nutrients were provided demonic one. Finally, in my room, there was no sleep to through a feeding tube in my nose—and during one of be had. People prodded me constantly, checking various the walks, started to feel warm drops down the backs of items on their hourly schedules. I was given a morphine my legs. I sheepishly wound my way back to my room, pump that my nurse called “my new best friend.” I was hoping I wasn’t leaving a trail, and called for the nurse, told I could push the button every ten minutes for liquid who was none too pleased. I remember that sponge bath relief. I watched the clock, which seemed frozen in particularly well. time. Though I pressed the pump, relief never arrived. The next day came as a shock: I felt like crap. What? For the first two days, the nurses were completely mine, How was this possible? I’d been walking! On the road

24 ABILITY 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 fin- ished the best book that I’d read in years, The Coffee Shop Chronicles of New Orleans, by David Lummis, and was suffering from post-good- book 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 sud- denly 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 chal- lenged in a way I had never been before. By necessity, I would now begin walking a very different path. I want to look your best. I spent years rejecting jeans, but could choose to become more healthy than I’d ever been just last year I bought a pair I love and rarely take them before, and to learn to love like never before. I wit- off. They have a sleek, dark wash that you can dress up nessed the light in the eyes of the friends and family or down. The denim market has exploded over the past who were brave enough to take this journey with me, 20 years. My favorite jeans do not have a fancy pedi- and I felt blessed. gree. They only cost $35, and are your basic Levi’s, the GOOD JEANS AND GREAT GENES American classic. First, an update: I saw the doctor yesterday and found out the surgeons removed all the cancer from my tongue! Good jeans don’t become a part of you—they are you. So Unfortunately, on a microscopic level, it has spread to you try to choose well. Good genes (or, what you hope my lymph nodes on the right side of my neck. In a few are good genes) are handed down to you. You don’t get to weeks, I will need to undergo radiation and, most likely, choose them. Some people are sleek, some are tall. Some chemotherapy. I am disappointed, of course, but know I people are a bit big-busted, some get a big tush. Some have the strength to get through this. I didn’t feel this people’s genes have a lineage of cancer. My genes, much strong when I first heard my diagnosis in the doctor’s like the denim I wear, seem to be of a simple lot. German office, but after not being able to sleep for hours, I farmer stock, Irish and Cherokee Indian, all of which remembered the truth about myself: I am tough! make me the unique expression that I am.

My healing is happening at an amazing pace, which has Like most of the men in my family, and like my favorite surprised even my doctor. My breathing tube was jeans, I have become better over time. My weight has removed today, as was my feeding tube. I even got to bounced around, all of my life, but seems to have found take a shower, after some creative plastic wrapping was a nice range. My face has mellowed and has actually done for the casts on my arm and leg. become handsome over the years. My brown hair now has a touch of gray that gives me, if not a wiser look, I don’t know why, but today I am thankful for jeans. then a slightly more mature one, and God only knows, I There’s nothing like a good pair. The best jeans become could use the maturity. Also, like my favorite jeans, I a part of you and define you. You drag them out when- am durable! Made to survive all the wear and tear the ever you’re down, or whenever you’re up, because you universe can dish out.

ABILITY 25 MY PILLARS since work was always a big part of my identity. Then, my Today I wandered onto the Oral Cancer Foundations focus switched to my surgery and preparations for that. By website. A lot of great info is available there, until you the time I was in pre-op, I’d forgotten all about the tumor, read the mortality rates: 27,000 people are diagnosed because I was about to have my neck sliced open wide with some sort of oral cancer each year, and only half of enough for someone’s hands to reach into my mouth! those are alive at the end of five years (the most impor- tant 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). Post-surgery, I began waking up to morphine-induced In a day or so, I won’t really remember the statistics and hallucinations. These took up a lot of time of their own. will again be focused on my recovery. I prefer to focus The feeding tube was a beast, right from the start. It was on the personal pillars of my health. These include: sewn into my nose, causing me nightmares of being dragged along by a huge hook. Then, my concern Faith: Get those prayers going. Faith makes us healthy switched to my trachea tube, which always needed suc- even before any of us can see the physical proof and is tion as my immune system worked to get it out of my one of the strongest medicines in the universe. Faith is body. Then, there was the war of the nurses: the hover- our connection to God. It allows us to see the world ing nurses who would not let me sleep, and the nurses removed from its physical bonds. It tells us that we are who wouldn’t come even when I called them. one with God. Yes, I know all of the arguments against it: Faith is for the weak. Prayer doesn’t work. I pray to Once my trach and feeding tube were finally removed, win the lottery every week, and I’m still working at a 9- my focus turned to my cast. Today that’s the thing that’s 5 job, blah, blah, blah. I think of wishes as prayers, and bugging me, along with residue from the trachea tube over the years, lots of mine have been answered—espe- removal. It turns out that doctors don’t bother to stitch cially when I backed them with action. up the incision, they just let the skin grow back together on its own, somewhere down the road. Until it does, I Fantasy: Fantasy is my ability to envision a future. Fan- guess I have a “blow hole.” tasy works hand in hand with faith. It helps me imagine better tomorrows: a world without cancer, a life filled I have to admit that my “If it’s not one thing, it’s another” with happiness. Fantasizing helps me pass time I could philosophy started long before the cancer. Always rest- have spent worrying in a more pleasurable, uplifting less, never satisfied, I was one of those people who way. I can’t tell you how many times I’ve been inter- believed they appreciated beauty, while, in fact, I was viewed by Oprah or Ellen on my way to work! Thank missing it all around me. How amazing the sun feels on God for hands-free phones, because people no longer the back of my neck after I’ve being cooped up for so freak out when they see someone talking to himself in long. How cute my dogs are, curled up on my legs while I the car anymore. type. Before my diagnosis, I scarcely noticed the dappled light of the huge tree in our front yard. I failed to recog- Attention Deficit Disorder: My ADD helps me quickly nize how amazing the body is. dust my hands of any negative information I’ve been given. It allows me to let faith and fantasy take their From here on out, it’s up to me not only to seek out beau- rightful place, so I can put my energy into my healing. ty in the moment, but to rejoice in that moment. And Maybe my outlook is simplistic and I’m failing to take though I love to bitch and complain at the end of a long statistics into account, but I say there’s no way I won’t day, it recently hit me: how amazing would it be if I felt be here in five years. I have faith in the future, and peaceful at the end of a long day, instead? you’d better believe I’ll be around to live it out! “MAMA SAID THAT THERE’D BE DAYS “IF IT’S NOT ONE THING, IT’S ANOTHER” LIKE THIS...” I love that line. It never fails to make me think of Gildna One of the risks of undegoing my surgery was the possi- Radner and one of my favorite Saturday Night Live bility that a nerve controlling muscle movement in my characters, Rosanne Rosanna Danna. Roseanne’s words face may be severed. It could distort your smile, my are appropriate for my cancer battle: when you’re in the doctor warned. process of healing, it’s never just “one thing!” So after my surgery, I checked to see how my lip was At the start of this journey, the tumor on my tongue was moving, and decided that all was fine. However, in the the cause of my pain. Then, my big concern was the fact I weeks that followed, I came to realize I had no feeling had to take time off from work. Then, my focus was on from approximately the bottom of my ear to just before trying to figure out who I was when I wasn’t working, the right side of my chin. My doctors say this could be:

26 ABILITY a. permanent the pain. In spite of my pain, I continue to be grateful. I b. temporary swelling that blocked the nerve, subsiding am surviving. In less than four weeks, the treatments over time will come to an end. c. unlikely to heal for years, as the nerves work to rewire themselves and restore feeling to my face OH, THE PAIN OF IT ALL! Just three more sessions to go. I’m so burnt I can barely This morning, while brushing my teeth, I realized that move my head. My tongue is so swollen that I can hardly even though my lower lip has most of its mobility, I can speak. Sores in my mouth prevent me from drinking water no longer form an “O” with my mouth. My lower lip without a great deal of prep. I haven’t taken a painkiller will go up but not down. Great. I’m going to have a lop- during this entire experience and now I find myself wanti- sided smile. Ran, calm down, I told myself. Think about ng something strong! I feel pitiful and weak and it sucks. the people who have it so much worse than you. Think about the guy you always see when you go to the radiol- Today, I understand why doctors don’t tell you every- ogist who had both legs amputated. I bet he would be thing the treatment process entails. Who in their right more than happy to trade places with you. mind would allow themselves to be tormented? If I could do this all over again, there is no way I would My shallow side has got me wondering: would other agree to radiation. I would rather follow a careful diet people, faced with adversity, willingly change places and work for the best result possible. But ask me again, with someone else if it meant giving up what they had in five years—when I am cancer free—if this was worth learned? Would Steven Hawking trade places with a hot it, and I may sing a different song. guy who has a 75 IQ, just to get laid? And is it shallow of me to want the smile I was born with? LET THE LIGHT IN Two weeks ago, I finished my chemotherapy and radia- WHEN THE FEAR CREEPS IN tion, and announced to the world that I was cancer free, Those of us intent on surviving cancer often put a brave and ready to start healing. Afterwards, I slept for almost face forward. For some, this is a “ fake it till you make three days. Ken woke me up for meals, and then let me it” strategy. For others, they know that’ll be okay even- go back to sleep. I felt as if someone had siphoned my tually. Survivors know that their hope and faith keep tank in the middle of the night and left me with nothing. them alive. Cancer treatment can be brutal, but you must walk forward to your treatment room as if it’s nothing I continue to heal more every day. I’ve watched every important. Killing cells. Fusing tissue. It’s nothing. We day as the skin on my donor tongue sheds and reveals can handle it. We are survivors—until the fear creeps in. new skin, and swelling reduced. By Friday of last week I was starting to speak without pain, although there is There is virtually no human body made to withstand the much speech therapy in my future. effects of radiation. Treatments such as acupuncture can help alleviate the side effects, but my acupuncturist has When God closes a door he opens a window, but lately told me she’s never seen anyone go through radiation I’ve kept my drapes drawn. I feel stuck. I want to make without some ill effects. changes to my life in order to live happily, but feel pres- sure to rejoin the world. I look forward to going back to I have another 18 days of treatments yet to undergo, work, but will never seek my identity through my occu- with another round of chemo scheduled to boost the pation again. A job is merely a means to make a living. I radiation. Fear has crept in. I know I will survive this— want to start a more disciplined spiritual practice. but do I really want to? Recently, while sitting in my support group, I realized My answer is yes. Pain is a small price to pay for love that I’m not special because I got cancer. I’m just one of and for life. In a year I will remember the treatments and millions who’ve had to face it. So here I am—grateful the blisters, but I will not remember the level of pain I that I don’t have to do this on my own. I have so many experience now. I will remember the people who stood by amazing people around me to cheer me on. Some are me, each sending me energy to get through this. Friends survivors and some are just amazing people who inspire who force me to eat, even when the experience hurts so me every day. I am also grateful for Ken and for all of much I want to throw the bowl of soup across the room. my family, who have made this journey as easy as it could possibly be. Now on to my first prescription for Love is what I will remember and take from this experi- healing myself: open the drapes, and let the light in! ence. 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 Ran Michels the same part of our mind that allows us to rise above oralcancerfoundation.org

ABILITY 27 t also became clear several of the US sprinters had Singleton, and with that success came Pistorius’s fame. been doing some hard work. This was most evident It was Pistorius who was dubbed “Blade Runner,” due in the cases of Tatyana McFadden and Jerome Sin- to his cheetah-running style, which is commonplace gleton. McFadden dominated the running events, among sprinters. winning four gold medals and a bronze, while Sin- gleton came back to the United States as the fastest Pistorius also gained fame when he fought for the right amputee in his class after upending “Blade Runner” to compete in the 2008 Olympic Games, but failed to Oscar Pistorius for the 100-meter (100m) title. Now qualify for South Africa's Olympic team. As Pistorius the focus shifts to London, site of the 2012 Para- faced these struggles, Singleton kept getting better, los- lympic Games. The fact that the games are more than a ing to Pistorius by just .03 seconds in the 100m at the year away has done nothing to slow the training of these 2008 Beijing Paralympics. world-class athletes. Finally, in January, Singleton edged out his archrival to THE FASTEST MAN win the 100m and claim the gold. Singleton got out to the better start, but Pistorius secured a comeback, draw- Jerome Singleton doesn't have to wear long tights any ing even with Singleton as the two speedsters came to more, or pants to cover up his legs. Why should he? It the line at identical times of 11.34. Singleton's lean for- would only slow his time. ward was enough for victory as he went tumbling onto the track's surface, sending Pistorius home defeated for Singleton became the fastest amputee sprinter in the the first time since the 2004 Athens Paralympic Games. world when he beat Oscar Pistorius in the 100m (T44) at the IPC Athletics World Championships, back in Jan- “It finally solidified the rivalry,” Singleton said. “Oscar uary. Singleton and Pistorius have been rivals since and I have been calling it a rivalry since 2008, but I've 2008, when they began competing against each other never won. So you can't call it a rivalry until you beat on the track. Pistorius had always gotten the better of the other person.”

28 ABILITY Though claiming the title of “fastest man” is quite an accomplishments had been on a walking-prosthetic leg. accomplishment, Singleton—who has only been com- It wasn't until 2006 that Singleton discovered adaptive peting internationally at this level since 2006—main- sports. Almost instantly, he knew he wanted to be a part tains a drive to keep winning. of that experience.

Singleton, who has competed in sports all of his life, Singleton began competing on the track, though his was born without a fibula in his right leg and became an priorities remained academic. He graduated from amputee at 18 months old. Nevertheless, he followed his Morehouse and attended graduate school at the Uni- older sister's footsteps on the track, running high hurdles versity of Michigan, where he studied industrial engi- in middle school and high school. He also played bas- neering while training with the track and field team. ketball and football, and was one of South Carolina's There he discovered that balancing athletic competi- top 100 senior football prospects during his senior sea- tion with schoolwork was difficult but manageable. son. Most of his competition didn't know he was miss- ing a leg. “With athletics, anything can happen,” Singleton said. “I might wake up one day and not be able to compete “I was a little self-conscious before I met everyone else anymore, but my mind is still there. I'm not going to with physical disabilities,” Singleton said. “When I tried defeat myself. I'm going to work. I've been given these out for the basketball team, I wore sweatpants. Whenev- opportunities because of athletics, but the first time I er I went to a track meet, I wore long tights. People did- left the country was because of academics, with an n't know I had an artificial limb, the majority of the time.” internship in Geneva, Switzerland.”

Singleton’s physical differences didn't seem to matter. True to his interest in scholarship, Singleton completed As a young man, he found success not only on the his graduate degree before training his focus solely on track, but also on the football field. After making a the track. After graduation, Singleton competed in Janu- switch from runningback to strong safety, he went on to ary's IPC Athletics World Championships, where he play college football at Morehouse, thanks in part to a stunned the sprinting world with his victory. full-academic scholarship. While there, he double majored in mathematics and applied physics. “It's a great feeling to know I'm the fastest amputee in the world,” Singleton said. “But I also recognize that for Singleton’s interest in the physics lab, as well as his per- an amputee or any person with a disability to come out sonal accomplishments, led him to researching prosthet- and compete and push himself to go further is monu- ic running legs. Up until that point, all of his athletic mental, in itself. I'm thankful.”

ABILITY 29 Singleton is still pushing. He won silver at the IPC McFadden said. “It's a different type of mental strategy. event, in the 200m, and has his eyes on the world record It helps me keep up my endurance, as well.” time in that event. He and three other US members won bronze in the 4x100m relay. The January event was out- McFadden is known in the racing world for her upper- side of the prime time for achieving the fastest time dur- body strength, something which has taken both dili- ing outdoor season—so Singleton’s goal now is simply gence and time to develop. Born in Russia with spina to get faster. He has his eye on US sprinter Marlon bifida, McFadden needed a crucial surgery that was held Shirley’s world record in the 100m for Paralympic up for 21 days. It was a surgery she wasn’t expected to sprinting: 10.97. survive.

“When I come into London, I want to do so well that McFadden then was placed in an orphanage that could there's a void between me and the next person and you not afford the wheelchair needed to improve her mobil- can't compare us,” Singleton said. “That's what I want in ity. Until the age of six, she transported herself by track and field.” “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 PRACTICE MAKES PERFECT manage the sudden accessibility of resources like physi- cal therapy and a wheelchair. McFadden's “ya sama” Tatyana McFadden describes the IPC Athletics World catchphrase—which means “I myself” in Russian— Championships as “like another practice.” If that's the became a mantra that drove her to independence and case, her competition mode must be surreal. success.

McFadden came away from the World Championships “Something about sports just gave me that competitive with four gold medals in the 200m, 400m, 800m and drive,” McFadden said. “I just want to be the best. 1500m, and won a bronze in the 100m to go five for Looking into my past, things were very difficult. I know five in her trip to Christchurch, New Zealand. Not bad that things I face now are probably not as difficult as for a “practice.” things I faced before. So I think competition only makes me stronger.” “World was a great, great championship for me,” McFadden said. “It’s a huge event, but it helped me McFadden's strength continues to grow, as evidenced by relax more. It helped me figure out what I needed to do her progression in the lead up to London. At the 2004 for London.” Paralympic Games, when she was just 15 years old, McFadden won the silver medal in the 100m (T54) and Reaching the goal of competing in London has demand- bronze in the 200m. Four years later, in Beijing, she won three silver medals (200m, 400m, 800m) and a ed some unique training from McFadden. When she bronze (4x100m relay). Then came her marathon victo- entered college at the University of Illinois and began ries, followed by her five medals at the World Champi- competing on the university's adapted varsity athletics onships. With this string of successes, McFadden simul- track team, marathon competition was mandatory for all taneously scored a victory for the rights of people with track athletes. A marathon? For a sprinter? disabilities, and has successfully lobbied for Maryland public schools to allow students with disabilities to par- “I thought, you've got to be kidding me,” McFadden ticipate in sports. said. “I’m a sprinter and I can't do this. I don't know how I'm going to prepare for this.” The medals McFadden wins—and the message she sends—has her marching toward London 2012, carrying She figured it out. the US flag. But she knows it won't be a smooth road. When McFadden took to the blocks in the 100m at the First up was the 2009 Chicago Marathon’s wheelchair World Championships as a heavy underdog, she saw division. Here McFadden focused on building some familiar faces mixed in with the new ones. This, endurance for her middle-distance events. She ended up she understood, was a sign that practice won't stop winning the marathon. between now and next summer.

During the training season prior to this year's World “I know I have to work even harder every day because Championships, McFadden again competed in the each day I train I'm going to get better, but each day Chicago Marathon again and finished third. Then, a they train they're going to get better,” McFadden said. month later, she won the New York City Marathon’s “Now I'm working toward London. Everything I do— wheelchair division. Now the notion of a sprinter run- World Championships, marathons and sprinting—it all ning marathons seems a little less crazy. helps me prepare for London.” by Josh Pate “I thank my coach for steering me in that direction,” paralympic.org

30 ABILITY ABILITY 31 On Christmas Eve of 2007, I arrived in Los Angeles a studio adapted to meet the sensory preferences of stu- with my husband and our baby son. We had come from dents with autism spectrum disorder (ASD). Dr. Ron Sydney, Australia, with plans to spend six months in the Cohen, the president and chief executive officer of United States. On behalf of St. Lucy’s School in Syd- UCPLA, invited me learn more about the organization’s ney, I was to spend my maternity leave researching programs for children. After having worked with chil- schools and programs that served individuals with dis- dren in Australia for 10 years, I was excited to see the abilities in the United States. work being done by others.

I could never have imagined how this undertaking I had begun my career as an actress, primarily work- would change our lives. I could never have known that ing in children’s theatre. I’ve always felt that the it would lead me to my dream job: designing a program imagination and creativity of a child are wonderful that would reflect everything I believe to be true about things to share. I enjoy enchanted worlds and find it the best way to educate young children. Let me tell you easy to inhabit them. Eventually I was drawn into the- how this came to be. atre education and was amazed by the effect of theatre on all children. I was intrigued, in particular, by the One of the first places I contacted after arriving in Los responsiveness of children with disabilities. The puri- Angeles was United Cerebral Palsy (UCP). Earlier in ty and depth of their reactions were fascinating to me. the year, the UCP branch in New York City had arranged for me to teach dance and theatre workshops Eager to understand more about the influence of theatre for adults with cerebral palsy. I loved the experience of on children with disabilities, I began to work in spe- working with adults—the group of students was fantas- cial day classes in Australia as a drama teacher, stud- tic and everyone was open, responsive to music, and ied for my master’s degree, and ended up an artist-in- willing to play within different theatre forms. I was hop- residence at a private school for children with special ing to work with adults again. needs. Immersion in the creative arts played a central role in this school’s curriculum and in the foundation UCP of Los Angeles (UCPLA) offered a number of pro- of its educational philosophy. I founded the school’s grams for adults and children, including ballet classes in children’s theatre group and even secured it a venue at

32 ABILITY Artistic instructor Olivia Karaolis engages young students at a UCPlay session. the Ensemble Theatre, one of Sydney’s major theatre curriculum I engineered met the California State Board companies. of Education content standards for theatre and, in addi- tion, used the arts to target development of social, But imagine my surprise when I discovered that in Los behavioral and communication skills. In essence, it Angeles, the home of Hollywood, many children with drew on individual strengths and placed each person at ASD and other developmental disabilities have limited the center of his or her own learning. The curriculum (if any) access to an in-depth arts education. To their was given the name “UCPlay”. credit, educators in the States seemed beautifully versed in structured teaching strategies and in applied behavior UCPlay was piloted at Walgrove Elementary School in analysis. Individual Educational Plans (IEP) are clearly Los Angeles. The selection of this school was done in used more effectively in this country than I had ever collaboration with the autism support unit at Los Ange- observed in Australia. But where was the time to play, les Unified School District. The district representatives to make things and to have fun? were supportive and enthusiastic and the teachers were interested and excited. We were off to a good start. UCP offered me an opportunity to address this problem by allowing me to pilot a program that would give chil- After eight weeks using drama and puppetry to teach the dren in special day classes the same in-depth arts educa- students about friendship, the class’s teacher began to tion as was received by their peers. My official involve- notice many students generalizing these skills on the ment in this effort began in 2008, as I started to design playground. The children spoke more and engaged more the program. My approach was based on the conviction in drama than in any other group activity. As the that true learning can only happen through experience. UCPlay program’s first students, the children at Wal- That is, to truly experience something you need to be grove Elementary held a special place in our hearts. We exposed to it in a multitude of ways. decided to celebrate their engagement in our program by having them create the UCPlay logo. The creative arts offer endless learning experiences and opportunities for individuals to make connections. The 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 UCPlay means the world to me, largely because of the number of urban schools, including Wilton Place Elemen- students and wonderful people who have helped tary in Koreatown. At this school I met an extraordinary UCPLA not only continue the program, but—even in young man with autism whose most powerful method of the middle of huge funding cuts—expand it! Several communication is illustration. We helped him to use this teachers have made large personal donations to help fuel gift as a tool for learning across all subject areas. our efforts. Parents, with the help of organizations like The Santa Monica Education Foundation and the Mal- Tom Whaley, Head of Theatre and Performing Arts for ibu Special Education Foundation, have raised thou- the Santa Monica-Malibu Unified School District, sands of dollars to help UCP fund the UCPlay program brought UCPlay to the students of his district and pro- for their kids. vided them with evidence that the creative arts can give people a voice, an opportunity for collaborative learn- Even the clothing outlet Anthroplogie donated ornaments ing, and a place to enjoy interaction with others. For to be used in puppetry (after carefully removing any many special needs students, schooling is dictated by glass from every item). Students from the community following the student’s IEP, as guided by a therapist. have selflessly volunteered their their time and their tal- But UCPlay is unique in that it allows a new approach ents to support the program and, in the process, have to learning. As one student shared, “UCPlay is the first learned about the experiences of individuals who per- drama program that takes my needs into consideration ceive the world differently than themselves. without talking down to me. I am always a teenage boy, not a baby, to them.” Through UCPlay, we have come together to give stu- dents a place to be heard. We continue to play an active Testimonials like this speak of the importance of the arts role in student education and to help reveal, to them- in any student’s ability to learn. Time and again, kids selves and to others, who these students can be. Being in greet each session with excitement. The classroom their presence in one of my greatest joys. teacher feels encouraged by the sound of an entire class’s laughter, as well as by the decision of students by Olivia Karaolis who typically withdraw from social contact to engage. ucpla.org

34 ABILITY ction breeds knowledge,” said Paul sought technical assistance and information on how to Mumba, an inclusive education consultant make its facilities, programs, and services more accessi- specializing in the policy regimen of ble to the public. Staff members requested education Zambia. Last fall, his signature declara- and training to correct the misconception that a medical “ tion served as the nucleus for Building background is necessary to respond to needs of people Capacity for Inclusion in Africa, a 15-day expedition with disabilities. They were also given models of pro- spearheaded by Mobility International USA (MIUSA). grams and services that include and empower people with disabilities. According to Mumba, many parents and educators throughout Zambia believe children with disabilities Additionally, parents were provided the supports and have neither the ability nor the right to receive a public resources necessary to convene as an emerging social education. This social stigma perpetuates barriers body, and young people with and without disabilities throughout the region—barriers that are particularly were brought together as an inclusive social force. damaging to the nation’s youth. Finally, professionals and allies assembled to draft poli- cy-change recommendations for CHIN, and for cadres While a number of activists are leading the charge for of the Zambian Ministry of Education. grassroots social change in Zambia, no legislation is being enacted to curb discrimination against this disen- The primary intention of our efforts was to support a franchised group, and most Zambians remain unfamiliar quest for social change on policy and organizational lev- with the severity of the problem. els throughout Zambia. But as a biproduct of this process, we found we were also directly impacting indi- To tear down barriers for Zambians with disabilities, vidual lives. The following are some highlights from members of the National Youth Leadership Network our itinerary: joined forces with the Children in Need Network (CHIN), which served as our host organization in the DAY ONE: We explore the concept of inclusive region. Our group included Lou Enge, MIUSA Project education in Zambia. To date, children with disabili- Specialist for International Development and Disability, ties are virtually excluded from classrooms. Mumba, Linda Shepard, CEO of Parents Educating Parents and our co-facilitator from Zambia, shares his belief that Professionals, and myself. all children are entitled to an equal education:”We call our children disabled without taking the time to Composed of a range of non-governmental, community- understand what they need in order to learn,” he says. based, and faith-based organizatons, CHIN provides a “We are the ones who need to learn so we can really variety of services, from educational to nutritional pro- serve the child. The children bear the brunt of the gram support, to child-abuse prevention services, to feeling of failure when, in reality, the children don’t skills training. As part of our collaboration, CHIN fail—the teachers fail.”

ABILITY 35 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 mate- rials, 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 feel- ing of full independence.

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 DAY THREE: We continue visiting schools in very youth. These young leaders are evidently visionary small sub-communities outside of Lusaka, Zambia’s thinkers who speak of ways to break down social exclu- capital. We learn that, only months ago, the headmaster sion, not merely by theory, but by practice. of a school stoned a mother because she sought enroll- ment for her son with albinism. The headmaster said he DAY SIXTEEN: A day centered on the importance of was offended the woman would even make such a community. In such a short period, we’ve come to estab- request. In the end, the mother, who by this point was lish alliances with individuals who experience struggles experiencing seizures and intense headaches, was similar to those of us on the other side of the world. The charged with a social offense, while the headmaster feelings of partnership and connection are strong. It is an received no charge against him. It was the woman’s amazing confirmation that individuals are at the heart of sixth attempt to find a school for her son. social change and community building. Individuals who, only 10 days ago, heard about disability pride for the DAY SIX: We bring parents—some of whom lead first time, are now practicing it. Those who understand non-profit organizations, and some of whom are inter- the concept of social struggle can collaborate to create acting with each other for the first time—together with positive power. other parents of children with disabilities. Topics include the availability of public resources, as well as DAY NINETEEN: Our final day of meetings is efforts to break stereotypes. Mothers speak of how some accompanied by the stinging sense of separation at this children with disabilities spend their lives living in the visit’s conclusion. My “home country” gives me so many corners of rooms, seldom if ever going out into the com- rights and so many opportunities that my new brothers munity, because of the risk to the child and the family. and sisters of Zambia also deserve. Why is it that I should be so lucky while they still battle oppression? I pause for DAY SEVEN: We visit a Zambian school at which a a moment to capture the image of the local school in community event is held. Organizational leaders and which I stand, when a mother puts her hand on my shoul- political representatives unite to exchange information der. “Thank you,” she whispers. Our eyes meet and we and learn about new concepts of disability that are rooted look at one another with a calm silence. “Thank you,” I in personal pride, rather than in medical reference. While reply. We smile, and she walks away. formal communications are rewarding, hugs and hand- shakes at the end of the day exemplify real progress. A As Mumba taught us at the beginning of this experience, passion for change is powerfully present among these “Action breeds knowledge.” The actions exhibited individuals. It is as though we have rewound the clocks throughout this journey are symbolic, preliminary steps to the years preceding the disability rights movement in to many more that need to take place if a fully inclusive the States. Change has not yet arrived, but the ideas and international community is to be created. the motivation are plentiful. THE TEAM DAYS EIGHT AND NINE: A two-day policy development venture breeds success. Representatives DR. SICHAMBA CHARLES, NATIONAL of various venues draft CHIN’s first policy on inclu- BOARD SECRETARY, CHILDREN IN NEED sion. In a total of eight hours, approximately 30 people NETWORK (CHIN): “We have contributed to policy devise a policy proposal to implement full inclusion making in this country with great strides. CHIN has a within the organization. The group plans to propose position in our government to contribute to policy this policy addition to other organizations and to repre- change, and we have been challenged with policy devel- sentatives of Zambian ministries. opment. But the efforts through this program will allow for the creation of a policy that will surely be adopted

36 ABILITY Betsy and Paul Mumba Biswell Mwenya Pastor Stephen C. Bwalya Linda and Lou

Yvonne Zimba Dr. Sichamba Charles Astrida Mwila Kumda Reverend Aaron J. Chilunjika Rosemary M. Mwewa with no objection. I envision that, one year from now, ASTRIDA MWILA KUMDA, PROJECT COORDI- this policy will be circulated within the Zambian Min- NATOR, ZAMBIA ASSOCIATION OF PARENTS istry of Education with particular attention given to chil- FOR CHILDREN WITH DISABILITIES: “As a moth- dren with disabilities. It will serve as a way for all people er of a child with disabilities, my aim is to change the way to see the importance of such inclusive measures.” community thinks about disability. My child has the same rights of any other child; my 11-year-old son deserves the PASTOR STEPHEN C. BWALYA, DIR., WONS same respect. Children may not always be able to speak for MINISTRIES INTERNATIONAL: “So many people themselves, in the traditional sense, but that is when it [with disabilities] are relying on individuals from many becomes our responsibility to speak on their behalf, and I am social realms to come together on their behalf. This is doing that for my child and for other children of Zambia.” important because, while I appreciate the efforts of these professionals, many of the people with disabilities in BISWELL MWENYA, STAFF OFFICER, ZAM- our country have been left out. Now we are coming BIA MINISTRY OF HEALTH: “Too often people together—people with disabilities and people without— with disabilities are forbidden from participating in to equally represent our community. So many people society. We may say that policies are essential, but they will benefit from these humbling efforts.” are no good without actions. We must work together to achieve this greater end. For anything to be implement- REV. AARON J. CHILUNJIKA, DIR., CHISOMO ed, there must be hard work, and we are ready to do that DROP-IN CENTER, FULL PROOF MISSION: for ourselves and for those less represented.” “There is growing knowledge in our community around disability needs, and we have a growing understanding MUTEMA RICHARD, HEAD MASTER, JATISHA of what services we need to best support all youth in our SCHOOL FOR ORPHANS AND VULNERABLE community. We have lots of work before us, but I have a CHILDREN: “It is time for us to begin changing the vision that these efforts will move from paper to com- way people have been thinking for centuries. Children munity reality. It will take commitment, unity and finan- with disabilities are valuable to our schools. They need cial resources. All of these things are available. We just education, but they provide education as well. If we are need to use our experiences to bring them together.” seeking ways for our communities to be more self-suffi- cient, we must allow all people the ability to contribute PAUL MUMBA, SCHOOL IN-SERVICE COOR- to this cause, including those with disabilities.” DINATOR, INDEPENDENT INTERNATIONAL EDUCATION CONSULTANT: “Working with these YVONNE ZIMBA, YOUTH EMPOWERMENT individuals has added value to the whole concept of SPECIALIST, CHILDREN IN NEED NETWORK inclusive education in [Zambia]. Whether the results (CHIN): “We are working to create a new environment will be seen in rural schools or national government, it within CHIN as well as within Zambia. People with dis- is invigorating to see how truly inclusive community abilities were cast aside for many years. We are now services could work. Looking forward, I see this to be banding together to create a new, and strong, and power- an example of real progress. ful community. Our allies—countries like the United States—have done the same thing before us. That is why ROSEMARY M. MWEWA, EXECUTIVE we turn to such allies for direction and support. We have DIRECTOR, CEREBRAL PALSY ASSOCIA- faith that we will be able to create an equal society in TION OF ZAMBIA: “One of our biggest challenges is our country, as well.” the incapacitation of people with disabilities brought by Betsy Valnes about by the general society, not by people with disabili- Executive Director of the ties themselves. We need additional resources for com- National Youth Leadership Network munity involvement, family support, respite care, and Mobility International USA transportation. People must accept that disability comes miusa.org into anyone’s life at any time. Disability associates itself Children In Need Network of Zambia with any family of any economic status.” chin.org.zm

ABILITY 37 TUSCAN WHITE BEAN SALAD ON CROSTINI Approximate per serving: 289 calories, 6 grams of fat. This elegant appetizer or flavorful side dish features Note: Cannelloni beans are large, white Italian kidney healthy beans. Begin tossing ingredients together about beans. Great Northern beans, which look like white lima 45 minutes before serving, so the salad can chill in the beans, can be used as a substitute. refrigerator for 30 minutes. Aside from its star, the white bean, the tomatoes, onions, and parsley in this CRISPY SHRIMP SENSATIONS recipe are also rich in cancer-fighting nutrients, while If you love shrimp, here’s a crunchy new way to eat them. the calorie count is on the skinny side. Ingredients: Ingredients: • 1 pound medium shrimp, peeled and de-veined SALAD DRESSING: (about 24 shrimp) • 2 teaspoons olive oil, divided • 1/4 cup cornstarch • 1 garlic clove, minced • 1 tablespoon water • 1 teaspoon dried oregano • 2 large egg whites • 1/4 cup cider vinegar • 1- 1/2 cups finely crushed, reduced-fat buttery crackers (about 35 crackers), such as Ritz BEAN SALAD: • 1 teaspoon paprika • 2 16-ounce cans cannelloni beans or other white • 1/4 teaspoon salt beans, rinsed and drained • 1/4 teaspoon pepper • 1-1/2 cups diced plum tomato • cooking spray • 1/2 cup chopped Vidalia or other sweet onion • 1 12-ounce bottle cocktail sauce • 1/2 cup (2 ounces) crumbled blue cheese • lemon wedges • 1/3 cup chopped fresh parsley • 1/2 teaspoon salt Directions: • 1/2 teaspoon ground pepper Preheat broiler. Place shrimp and cornstarch in reseal- Two loaves deli-style bread for the crostini. (French, able plastic bag. Close bag and shake to coat. In a small Italian, or whole-wheat, for example.) bowl, combine water and egg whites; beat until foamy. In second small bowl, combine cracker crumbs, paprika, Directions: salt, and pepper. Dip shrimp in egg white mixture, then To prepare dressing: In a nonstick skillet, heat 1 tea- coat with crumb mixture. spoon of olive oil over medium-high heat. Add the gar- lic and oregano; sauté for 30 seconds. Remove from Place on a baking sheet coated with cooking spray. heat and stir in vinegar. Spray shrimp with a light coat of cooking spray. Broil 5 minutes or until the shrimp are done, turning once. To prepare the salad: In a large bowl, combine remain- ing teaspoon of olive oil and the next seven ingredients: Serve with cocktail sauce and lemon wedges. Serves 8. beans through pepper. Add the dressing to the bean Approximate per serving: 310 calories; 4.5 grams of fat. salad; toss lightly. Cover and chill for 30 minutes before serving. MINTED MELON BALLS Lime juice, mint, and a spoonful of sugar add an To prepare crostini: Slice bread thinly. Toast under a upscale twist to this simple fruit salad recipe, and one broiler or in the toaster. Top with bean salad. Serves 8. cup provides one of the five servings of fruits and

38 ABILITY 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 medi- um 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 serv- ing: 306 calories; 14.9 grams total fat; 46.1% calories from fat. cancer.org

ABILITY 39 Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere

40 ABILITY 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 fasci- nated. I ended up coming back for amateur hour on a Monday at midnight, and got up there with- out 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 Photos by Nancy Villere

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, year, and I don’t want every one of them to be the same. there was a producer from Make Me Laugh, an old com- If I get in trouble on stage, or if I go blank, it makes for edy game show. He hired me, which gave me a great great moments of entertainment. That approach has story to tell about my vacation. worked for me in the past, and I hope it continues.

So I went back to my regular job, at a carpet place, and Cooper: I talked to Jay Leno, years ago, about ad-lib- after that Make Me Laugh episode aired, I started get- bing, and he said, “Nobody ad-libs.” And I said, “What ting calls from Merv Griffin and Mike Douglas to about Robin Williams?” And he said that Williams is the come out and do shows. Diana Ross saw me on Merv best at having a big bag of tricks he can pull from, mater- Griffin and hired me to be her opening act. I thought, ial that he’s thought of and rehearsed on his own time. “I love doing this. Why not do it full-time?” So I took the plunge. Mandel: Well, I’m not saying nothing is repeated. There is a bag of tricks that, after 30 years, you know Cooper: You left a good job in carpeting? you can pull from. I have tried and proven pieces that I know will always elicit a laugh. People are paying Mandel: Yes, and then one thing led to another, and now money to see me, and they want to hear me do these I’m in ABILITY Magazine! (laughs) I was always scared cartoon voices, and some of the pieces I’m known for. to death on stage, though. I didn’t really understand But my favorite moments are those that have never what I was doing, or why the audience was responding, happened before. Like this interview. It was not pre- so I would say,”What? What?” and somehow that written, by the way. became a catchphrase. Cooper: Oh, it was rehearsed. I can tell this was all Cooper: That line wasn’t rehearsed? rehearsed.

Mandel: No. I don’t rehearse. I’m more comfortable in Mandel: No! In fact, as you read this, you’ll see this is my discomfort. the first time I’ve ever said this stuff.

Cooper: You just go up there with some ideas, and then Cooper: Would you like to speak directly to the ABILITY ad-lib the rest? reader?

Mandel: I hope to. Fear is my fuel. A lot of what I do is Mandel: I don’t know. Can we break that fourth wall in ad-libbed and improvisational. I do 200 live dates a print?

42 ABILITY Cooper: Click here. One night, when they were watching Candid Camera, I finally understood what comedy was all about. I heard Mandel: This is online too? the laughter on television, I turned around and saw my parents laughing, and that’s when I thought: “This is Cooper: It’s both in print and online, but I’ve often great. This is what I can do. I’m gonna prank somebody.” thought about incorporating a hotlink on our printed page that takes the reader into a web-based hologram. Cooper: What grade were you in when you made that discovery? Mandel: I don’t believe anybody’s actually reading this magazine online. If they’re online, they’re looking at Mandel: Second. [laughter] No. Twelfth. porn. [laughter] Cooper: You were a senior? ABILITY is what they click to when their wife comes into the room:“What are you doing?” “Reading that arti- Mandel: No. In Canada we had 13th grade. cle from ABILITY, honey.” 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: I didn’t finish high school! Can I still be in ABILITY? Mandel: It’s phenomenal. I’m a huge fan of mine. I go to just about every show I do. Cooper: We’ll have to think about it. So, were you ever officially diagnosed with ADHD? Cooper: (laughs) That’s dedication! Did you joke a lot when you were in school? Mandel: I’ve been diagnosed with ADHD and OCD.

Mandel: Yes, but nobody thought I was that funny. I was Cooper: Watching you on television, I always wondered, kind of a misfit, actually. When you’re young, you want who is the person who’s behind all of the nervous hand to be like everybody else, and I was like nobody else. I movement? 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 Mandel: It was me. Just not as medicated as I am now. didn’t have friends. I was really an outcast. Cooper: When did you first start to feel you may have some Cooper: Why? kind of condition?

Mandel: For one thing, this was in the mid-1950s. At Mandel: I don’t remember a time when I didn’t feel there that time, Attention Deficit Hyperactivity Disorder was an issue. But I wasn’t diagnosed until adulthood. I’ve (ADHD) was not an issue in school. Or at least, nobody always felt a little bit different, and I always knew I was- talked about it or labeled it. Today ADHD is very preva- n’t as comfortable with life as everybody else seemed to lent, but I would imagine there were just as many kids be. But I didn’t know what I could do about it. who had it back then as have it now. When I was a kid, I didn’t know anybody who went to a When I was a kid, I was considered troubled. I wasn’t psychiatrist. There was always a stigma attached to just the class clown who lobbed a funny quip from the mental health issues. I think there still is. But now I’m back of the class. I was outrageous. 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 Mandel: Not until I was in my forties. There wasn’t an addition to the school library, so that there would some lightbulb that went off in my head. It was just suddenly be people outside, measuring the building. becoming harder and harder for me to function.

“Who authorized this?” the principal would ask. The One issue that I talk about freely is my germophobia. answer: “Howie Mandel.” I’m in public life, obviously, and yet I’m somebody who really is not comfortable out in the world. So that Cooper: (laughs) Teachers must’ve loved you. became an issue for me. I found it becoming harder and harder for me to get along, and I was spending longer Mandel: I thought that was funny, but nobody else and longer in the shower. I wanted to spend a moment did. I was mostly entertaining myself, though. My outside. I needed help. So I got help. And once someone parents both had a great sense of humor, and always put a name to this thing, it all became easier. laughed a lot.

ABILITY 43 Cooper: You’re taking medications now?

Mandel: Yeah. And I’m getting therapy. I’ve done every- thing. 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, relation- ship 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. Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere 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 men- tal 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.

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 wash- NEVER LET THEM SEE YOU SWEAT: As a teen growing up in ing my hands. Canada, Mandel competed on the wrestling team, and secretly took lots of showers to cleanse himself of his germy opponents. Cooper: She didn’t suspect anything?

44 ABILITY

Mandel: I could sometimes cover my condition with I have been persistent in this business. I would imagine logic: “Let’s make a path in this hotel room with towels, she saw the charm in my persistence. Maybe. I don’t because you don’t know what was dripped all over this know what it was. carpet.” So she would walk along my path. “Let’s take the comforter off the bed with the salad tongs, because Cooper: I know you do some advocacy work in the we don’t know what’s on it.” field of mental wellness. Have you been doing any of that recently? I think the blacklight bothered her, though. I’d turn off the light, she’d think I was being romantic, and then I’d Mandel: Yes. I spoke on Capitol Hill for National Chil- click on the blacklight to look for stains. That really dren’s Mental Health Day. I’m mostly trying to help ruins the romance. remove the stigma that surrounds mental conditions and mental health professionals, because I don’t think Cooper: Sure. I think that would freak anybody out. there’s anybody alive who couldn’t benefit from a men- tal health professional being a part of his or her life. Mandel: She liked the kookiness in me. I’ve been liv- ing CSI: Crime Scene Investigation my entire life. Take a look at all the bullying and the shootings that When I was a kid, my parents bought me Green Ghost. happen in schools. Often the perpetrators have been Remember that game? identified as “problem children” long before any inci- dents happen, yet there’s nothing in the curriculum to deal with those kinds of problems. Our kids are spend- ing eight hours a day in school, and a lot of their issues are easily identifiable, even to the untrained eye. Imag- ine 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: No. People would just stay away from me. I Mandel: It was a blacklight game. Anyway, I had that was not invited to be a part of anything. Plus, I was game, and I looked at my blacklight poster on the wall always the smallest kid in school. I wanted to meet peo- and I thought, “What is all this other crap that’s being ple, but everything I’ve ever joined was the worst possi- illuminated?” [laughter] ble scenario for whatever my issues were. The only team I could get on in high school was wrestling. I was It freaked me out. I went into a room to play a game, I 90 pounds, and I looked like a girl. turned on the blacklight, and I screamed, “Am I going to die? What are all these blotches!” Cooper: I’m not going to laugh.

A lot of kids were afraid of ghosts and goblins. I was Mandel: And I wanted to meet girls. afraid of stains. Cooper: By wrestling them? Cooper: What would have happened if you didn’t have that blacklight? Mandel: (laughs) No. I didn’t wrestle girls. I didn’t want to touch anybody, and yet there I was, rolling on Mandel: I would have sat on some s--t I didn’t want to. the floor, sweating with strangers, looking like a girl.

Cooper: Maybe it’s better not to know what germs we’re Cooper: Why’d you join the team? touching. Maybe ignorance is bliss. Mandel: I thought I was going to meet people. I thought Mandel: I wish I were ignorant. I didn’t get my General I was going to be part of a team, and that girls were Educational Diploma (GED), but that doesn’t seem to going to like me because I wore a uniform. I didn’t real- have helped me. ize the uniform was a ‘onesy.’

Cooper: Your wife must have found your qualities A lot of people thought I was a girl at that time, because endearing. That’s what matters... I had long hair. So I figured out that the only way I could talk to girls was to go into the girls’ restroom, Mandel: You know, she wasn’t all that attracted to me. brush my hair in the mirror, and talk to the ones who It took me the longest time to get her. There was noth- came in. ing attractive about me, and I had a reputation for being outrageous. But I was persistent in pursuing her, just as Cooper: You really did that?

ABILITY 47 Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere

Mandel: Yeah. That’s where my wife met me, actually: together in partnership with a guy who could help me in the girls’ restroom. I could hear girls talking in there, organize my thoughts, because organization is not my so I went in, stood at the mirror, brushing my hair, and strong point. We’d hang out for hours and hours, every girls would come in, and we’d talk. They didn’t know I day, for a couple of months. He’d ask questions and I’d was a boy. answer them. When we finally printed out the tran- scripts of everything I’d said on tape, it was something Cooper: I can’t tell if you’re joking or not. like 900 pages.

Mandel: I’m not. I weighed 89 pounds, I didn’t shave, Cooper: Wow. and my voice was high. Plus, I had long, beautiful, flowing hair. Mandel: My original intent had been to write something less personal. I didn’t want to talk about my issues—not I remember I had a job once, selling egg-salad sand- because I was hiding them, but because I didn’t think wiches at bingo. My mom drove me to work and, while that’s what the book should be about. So I was a little we were in the car, guys would honk and whistle, trying taken aback by how much of the book really turned out to pick me up. That was my world in the ‘80s. to be about the trials and tribulations of being me. And I was embarrassed and afraid when it got published. But Cooper: You’ve come a long way. as it turned out, that book has prompted a lot of people to come up and say, “Me, too.” And that experience has Mandel: I was defintiely a late bloomer. I even tried to helped me become more comfortable with my mental talk with my voice lower for a while. My mom kept health issues. Enough people related to my experiences hearing “How old is your daughter?” wherever we went. that revealing those experiences didn’t turn out to be as embarrassing as I’d thought it would. Cooper: How did your book come about? I like the title: Here’s the Deal: Don’t Touch Me. Cooper: You’ve got nothing to be embarrassed about. You’ve built quite a successful life. Mandel: I wrote the book to collect a lot of really funny stories about my experiences in this business. It was put Mandel: It’s a constant journey.

48 ABILITY [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, Terry Mandel: You know what? Because I didn’t live was I in the girls’ bathroom brushing my hair? with you, I really didn’t know how much you used to shower. But I know you used to go home a lot. “Where Terry Mandel: [laughter] Yes. I knew you were a guy, are you going?” “I’ve got to go home and shower.” even if nobody else did. You had a reputation. Cooper: (to Terry) If you were going give some advice Mandel: What was my reputation? 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 dif- Terry Mandel: No. ferences and just let the love occur? Or should it all be out there in front? Cooper: You liked him because he was crazy and wild? Terry Mandel: I don’t think Howie knew that he had Terry Mandel: Not at first. At first, I said, “No way.” He OCD, especially back then. I think he just did these ritu- had this horrible reputation. als and had these thoughts, and he didn’t share them until later. 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 park- But I didn’t think it was weird. There were certain ing lot and spun out. things I thought were weird about Howie, but I didn’t live with him then, so I didn’t really know all of his I turned to him afterwards, as everybody was screaming, stuff. Nobody really thought about those things then. and I said,”Very funny!” Because I thought he had done Now people are much more aware of these things. it as a joke. Everything’s out in the open. People are talking about their differences. It’s good. It helps Howie to talk. Cooper: And it was not a joke? 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 Terry Mandel: I’ve seen ups and downs, depending on him, he was very upset with you because your hair was Howie’s stress levels. He’ll be better sometimes, better than his hair. 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. Cooper: I think there’s a tendency to fight taking med- ications, because they think their creativity might dimin- Mandel: Hair today, gone tomorrow. ish if you’re taking them...

Cooper: If you knew Howie had this bad reputation, Terry Mandel: He thought it would change his whole why did you talk to him? personality. It really didn’t. It just helped his thoughts, I guess. Even with medication he has the same thoughts, Terry Mandel: He was cute. but now they don’t give him anxiety attacks or affect how he functions. Mandel: And little. Mandel: I also spend less time in the hospital. Terry Mandel: He was adorable. He was shorter than me. Terry Mandel: (to Howie) You weren’t there that much. Mandel: All right. [laughter] I think you’re better now, don’t you?

Cooper: Terry, when you first started dating Howie— Mandel: Yeah. I’m fine. when you noticed he washed his hands a lot, showered a lot—what were you thinking, other than that he was cute? Terry Mandel: Your head’s better. Therapy has helped.

Terry Mandel: He was the cleanest guy I had ever seen. Cooper: It’s about coping skills.

ABILITY 49 L to R: Chet Cooper and Mandel listen to wife Terry Mandel (off camera) talk - CrushPhotoStudios.com Photos by Nancy Villere about the pranks she endured while she and Howie were first dating.

Terry Mandel: He’s a good coper. He’s better than I am Cooper: Through a flash mob? at coping. I can fall apart over any little thing, but Howie will just help himself and get through it. He’s Mandel: Right. What if we took the recipient of the mes- even better today than he ever was. sage 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: So we’re doing it. The first show aired a couple of months back, right after American Idol, on Fox. We Mandel: I’m on the road a lot. That works for us. have a production company. We’re shooting a lot of stuff right now. Terry Mandel: [laughter] Communication is so impor- tant. A lot of people give up so easily. You just have Cooper: Good luck with it. to care enough, believe enough. Mandel: So now that I’ve told you my life story, can I Mandel: She’s pretty smart, my wife. Those are great still be in ABILITY? words of wisdom from Mrs. Mandel. 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? howiemandel.com

Mandel: Yes. Mobbed is a flash-mob television show.(to OBSESSIVE-COMPULSIVE DISORDER is an anxiety Chet) Do you know the phenomenon of flash mob? disorder characterized by recurrent unwanted thoughts (obsessions) and/or repetivitive behaviors (compul- Cooper: We just had one outside your house. sions) such as handwashing, counting, checking or cleaning. These so-called “rituals” are often performed Mandel: If you’re alone, it’s just flashing. There’s got to with the hope of preventing obsessive thoughts or be a bunch of you for it to be a mob. making them go away. Though rituals provide only temporary relief, not performing them markedly Cooper: 4 folks, 2 squirrels and a dog. increases anxiety.

Mandel: It’s become this viral phenomenon that I People with OCD may be plagued by persistent, thought would be great to capture for television. In some unwelcome thoughts or images, or by an urgent need sense, television has tried to do this before, but it has to engage in certain rituals. They may be obsessed never really worked. There’s never been a hook, you with germs or dirt, and wash their hands over and know? A story to tell. over. They may be filled with doubt and feel the need to check things repeatedly. Effective treatments for Cooper: Do tell. obsessive-compulsive disorder are available. New, improved therapies can help most people with OCD Mandel: I thought, what if somebody has a message they and other anxiety disorders lead productive, fulfilling want to relay to someone else? A very private, intimate lives. For more information, locate mental health ser- message. Like, maybe they want to tell their boss to take vices in your area, affordable healthcare, NIMH clinical this job and shove it, or they want to come out of the trials, and listings of professionals and organizations. closet to their family, or they want to ask somebody to National Institute of Mental Health marry them. nimh.gov

50 ABILITY ABILITY 51 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 enthusi- asm 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, real- izing 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 sylla- bles 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.

One day in class, to my horror, Mrs. Williams called on me to read out loud. I stammered and stuttered and mis- pronounced 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. rowing up, I thought I was the only kid like Williams quieted the class and called on someone else to me in the world. Many years later, I came to read out loud. I was so humiliated, I wanted to cry. But understand that my story is the story of mil- crying was not an option. lions of Americans who struggle with litera- cy. We all have some obstacle with which As the school year marched on, I watched my classmates we’ve had to wrestle. What I finally figured out was that I grow while I shrank. There was so much confusing infor- was the only person in my life who could do anything mation that I was overwhelmed. I couldn’t take it all in. about what was holding me back. That realization was a But I tried and struggled to do my best for Mrs. Williams. quantum leap. Though I was having a hard time, I didn’t feel dumb. In the early 1960s, McAlisterville, PA, population 800, Outside of school, everything made sense. When I was a bustling Rockwellian village an hour northwest looked at my dad’s oil truck, I knew exactly how it of Harrisburg, the state capital. I was in first grade, and worked and the mechanics of how the fuel went through I don’t think any kid in the history of the world ever the hose and into the tanks. But I doubted myself loved school more than I did. My teacher, Mrs. Par- because I couldn’t read. Fortunately, somehow, I passed sons, was a petite lady in her early forties with a pleas- second grade, more determined than ever that third grade ant smile and a passionate dedication to each student’s would be a fresh start.

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Unfortunately, a month and a half into third grade, I was throw something—a book, a pencil, a tablet. I got in barely treading water. In class, I felt more and more like trouble routinely, and was frequently sent to see the an outsider. I couldn’t keep up, and my boredom was senior teacher and disciplinarian, Miss Marybeth. She maddening. At the same time, I was constantly on the was a solid woman with a sturdy center of gravity, edge of my seat, hoping I wouldn’t get called upon and strapping arms and shoulders, and not a touch of make- be embarrassed in front of the class. My classmates had up. Her thick, blonde hair was neatly wrapped up in a mastered printing their names in second grade—a task bun, atop which sat her ever-present prayer covering. with which I still struggled. If someone asked me to She was a pious woman who could recite the Bible spell my first name out loud, I could rattle off N-E-L-S- cover to cover. O-N. But getting that from my head and down onto paper was a struggle. Miss Marybeth’s disciplinary “office” was a desk inside the janitorial storage room. Beside her desk was a chair That was the year we moved on to cursive, which to me where she counseled children, right before she paddled looked like scribble. Mrs. Clark handed out worksheets them. The construction of the paddle was well thought every morning with the usual directive: “Write your out, and bore all the efficiency that could be crafted in a name in cursive on the top of your paper.” I really tried, Pennsylvania Dutchman’s woodworking shop. but every day my name came out as a jumble of illegi- ble chicken scratch. Miss Marybeth’s paddle followed the age-old standard design. The handle accommodated a double-fisted Mrs. Clark came up with a plan she felt would encour- swing. A dozen or so three-quarter-inch holes had been age me to try harder. One morning, we were busy hang- drilled through the paddle to ensure it whistled through ing up our hats, gloves and coats, when she wrote the air with maximum velocity. The whistling sound something big across the blackboard. We took our served another purpose, too: it struck terror into the heart seats and looked at the curious etchings on the board. of the child who was about to be anointed with the sting That’s when Mrs. Clark tapped her pointer on her desk of hellfire. several times to get everyone’s attention. I was sent to see Miss Marybeth for my first counseling “Class, class,” she said. “Does anyone know what I session after hurling a book at Mrs. Clark. I devised a have written on the chalkboard?” Nobody seemed to plan as I sat in the chair of counsel, waiting for Miss know. “This is how Nelson Charles Lauver lazily scrib- Marybeth to arrive and warm my ass with religion. It bled his name on his paper yesterday.” was a brilliant plan, I might add, and one of which I’m still secretly proud. I decided to place the onus of my The room erupted in laughter and chanted, “Nezon bad behavior on someone else. Chass Liver! Nezon Chass Liver! Nezon Chass Liver!” Finally, Miss Marybeth presented herself to deal with my “This is what you are to call Nelson for the rest of the book-hurling infraction. She took the paddle down from day,” Mrs. Clark instructed the class, “until tomorrow its hook on the wall and laid it on the desk as she prepared when I’m sure his name will be something different.” I to counsel me. I handed her a note from Mrs. Clark. She laughed along with them to seem unaffected, but on the examined it, refolded it, and laid it on top of the paddle. inside, I was thinking: I hate you, I hate you for this. Why are you doing this to me? “Nelson,” she said in her thick Pennsylvania Dutch accent,“what do you have to say for yourself?” Lazy? I wasn’t lazy. At that moment, instead of being thought of as the lazy kid, or the dumb kid, I chose to I looked down at my shoes and quietly said, “I didn’t be known as the “bad kid.” I knew there would be do it.” ramifications, but in keeping with my new “bad kid” persona, I pushed Mrs. Clark’s crazy-button at every “Then do tell, Nelson. Who was it?” opportune moment. Making a face at her, making an inappropriate remark, acting indifferent, or just ignoring I swallowed hard for effect, kept my eyes focused on her helped prevent her from calling on me, for the sake my shoes, and then softly uttered: “It was Satan.” of her personal sanity. Miss Marybeth gasped and pushed back in her chair, Mrs. Clark often sent me to the hallway with my desk hurriedly reciting a passage to ward off the dark angel. and chair so I would not disrupt class. This was embar- rassing because anyone who entered the school for any “Satan said he wants you to paddle my backside until it reason could see me sitting there, alone. But that could turns purple,” I said. never compare with the embarrassment I felt at being the “dumb kid.” Miss Marybeth sprang to her feet in defiance, uttering a passage that included something about “the protec- If, on occasion, Mrs. Clark did call on me, I’d often tive blood of Jesus.” She hung the paddle back on the

54 ABILITY 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 offi- cially 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 partici- pating seemed like a waste of time. I was 90 percent sure that if I stayed, the prin- cipal 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 func- tionally 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 Another helpful tool came in the form of an inexpensive Roosevelt, Albert Einstein, and others. set of phonetic audio teaching tapes I bought at a yard sale for five dollars. The tapes sounded as if they had “Dyslexia is simply a disconnect, a processing issue inside been recorded around a kitchen table by a husband and the brain, which makes reading and writing difficult,” wife with a guitar, but they worked. After working with the man said. “It has absolutely nothing to do with your Cheryl for six weeks, I found I’d made great progress. I intelligence.” could read multisyllable words and could sometimes read all the way to the end of a sentence. I was motivat- Having a name for my challenge made me feel hopeful, ed to keep going. but at the same time, I was overwhelmed. If this was my problem, how could I possibly get a handle on it? But By spring 1994, I was 30 and no longer functionally cautious optimism grew inside me. The man suggested I illiterate. My reading had improved dramatically, but start by contacting the Pennsylvania State Office of Voca- not without 18 months of determined practice. The goal tional Rehabilitation (OVR) to get an expert evaluation. of my rehabilitation was to help me reach my full poten- tial 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 As I weighed the options in my mind, my childhood dream dyslexia. She said that, just a few days earlier, she had of expressing my thoughts and ideas over the airwaves caught a news snippet about dyslexia, and encouraged as a broadcaster appealed to me more and more. “I’d like me to find out more. 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 case- worker 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 (listen- ing 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 “Wow, we’ve never had anyone make that request. I’m involvement, extensive intervention will be needed.” not sure where to begin.”

The bottom line: professionals believed it would be I had been kicking the idea of becoming a broadcaster nearly impossible for me to make significant progress in around in my head for a while. I thought the best way learning to read and write on my own. My best bet, they to start would be to visit a professional recording studio said, would be to hire a tutor and work one on one. I and make an audition tape. My caseworker agreed and, returned home that evening to a message on my answer- within a couple of weeks, I recorded my first voice audi- ing machine from one of State College’s graduate stu- tion tape at a studio in Lancaster, PA. On my tape, I told dents, Cheryl. She offered her services as my private a story about my Uncle Roy who, during World War II, tutor, at no charge, for as long as I needed. She said she had been forced to parachute out of his aircraft after it was willing to put in the time if I was serious about had been hit by enemy fire. Not only did he survive the learning. I immediately took her up on her offer. incident but, with the help of the French underground, Roy spent 90 days on the run, disguised as a peasant I began 90-minute tutoring sessions, two to three woman riding a bicycle. He eluded German troops and evenings a week, with Cheryl. She was amazingly dedi- triumphantly made his way back into Allied territory. cated and arrived each night with a fresh lesson plan. Contrary to popular belief, the experience of dyslexia is The studio owner thought it was rather odd to place a not akin to seeing words and letters backwards or upside story like this on a demo and tried to talk me out of it. down. In my case, at least, it is more of a confused mass But being different was exactly what I intended. I want- of letters and words on a page—as if someone has placed ed to be noticed. a piece of window screen over the text and moves it around while I try to read through it. With Cheryl’s help, I decided to throw myself completely into my new I soon discovered that larger, double-spaced print made a career. I sold all of my line-painting equipment, except tremendous difference for me. for my pickup truck, and traveled around town, shaking hands, smiling, and talking with everyone from ad agen- Cheryl also suggested we try placing various colored cies looking for voices for radio and TV commercials to sheets of cellophane over the text. Her plan worked! Yel- documentary filmmakers who hired narrators. Slowly, I low cellophane filters helped calm the chaos and anxiety developed a studio schedule as a freelance voice-over in my brain. artist. As it turned out, the story on my demo tape became the hook that made people sit up, pay attention,

56 ABILITY and ultimately hire me. Producers loved the fact that I challenges. I inquired about current forms of punish- was just a real guy who could tell a good story. ment and, more specifically, asked if students were still being confined in the school vault. Narration work wasn’t that hard to come by, and later I heard that Accu-Weather—one of the world’s largest I wrote the school superintendent. When he didn’t answer privately owned weather forecasting services—was hir- my letter, I wrote to him again. Even after I’d placed ing. Emboldened by my recent successes, I decided to several calls to his office, I was politely told by his sec- cold call Accu-Weather. retary, “The doctor is unavailable to speak at this time.”

Though Accu-Weather’s director of broadcasting seemed After a few more restless nights, I sat on the sofa in my reluctant to take me seriously because of my lack of living room and stared at a list of phone numbers. Finally, “newsroom experience,” I finally convinced him to take I mustered some courage, picked up the phone, and called a listen to my audition tape. By the time I left his office, various local and regional news organizations. I told them I had a part-time job. Accu-Weather produced and sold my personal story and expressed my concern that there local weather reports to hundreds of radio and TV news- were still students in Juniata County with special learning rooms throughout the United States and Canada. Here I needs who were not receiving help. I also condemned was, the kid who had been petrified to read in front of heavy-handed punishment and the use of the vault. 25 of my fellow students, now reading the weather broadcast to millions of listeners. All hell broke loose. Members of the press showed up in Juniata County with pens and pads, microphones, news Occasionally, however, I was haunted by my school vans, satellite dishes and TV cameras. Within an hour of years. I couldn’t go back and change anything, but I the first news van rolling up to the school, a knock came wondered about all of the kids who might have been, at at my door. A private courier stood before me with a that very moment, going through what I’d been through. sealed envelope that carried my name. Inside the enve- East Juniata still had the same principal, and most of the lope, on Juniata County School District stationery, was a same teachers were still there—even the bad ones. personal letter from the superintendent, requesting a meeting to discuss my concerns at a time and place of In my mind, while I had accepted culpability for my my choosing. I met with the superintendent and my old role in receiving a botched education, the principal and school principal, two days later, in the district’s admin- the others weren’t off the hook if they were still using istration building. Both men were furious that I’d had the same teaching methods of my youth. I tossed and the audacity to contact the press. turned in bed at night as I thought about the kid who might now be locked up in the principal’s vault. I I told the superintendent I simply wanted answers to thought about the kids who were now dealing with the some of my questions: what steps are you taking to teachers who had paddled me and who had broken my identify students with special learning needs? Do you arm. Could I truly be considered rehabilitated if I simply still use the vault to lock up kids? Are students still went on with my life with no thought for those who pounded into submission? Are children with learning might still be struggling? problems still paddled as “remediation” for their learn- ing difficulties? What steps are you taking to become The debate went on in my head for months. I finally compliant with the special education laws? But these came to the conclusion that, at the very least, I needed men only seemed to be interested in having me call off to approach the superintendent of schools and ask a few the press. When I said I had no button to magically stop questions regarding the current policies for identifying the media from looking into the problem, the superin- students with learning disabilities, punishment practices, tendent warned me: and, most of all, use of the vault. “This will not go well for you, Lauver.” I contacted various special education advocacy groups throughout the state to inquire how the Juniata County “I’m not afraid,” I told him. “I can’t imagine that, even School District measured up against other schools, in with all your power, there is anything you can do to me respect to providing services to children with learning that’s worse than what I’ve already survived.” disabilities. I wasn’t surprised when I learned the school district was seriously deficient and out of compliance I left the two men in the superintendent’s office, both of with state law. The Commonwealth of Pennsylvania them frantically wondering how they could dodge the Department of Education was sadly understaffed in the media. I received letters, phone calls, and voicemails area of enforcement. It was a watchdog without teeth. from angry citizens who felt I had no right to “meddle” in these matters. At the same time, my phone rang off I wrote briefly of my own story and detailed the punish- the hook with calls from parents who were concerned ments I had received while attending East Juniata. I about the overzealous punishments their children had expressed my concern for current students who might be received at school. My fears were confirmed over and in need of special services to help them with learning over by parents who spoke of the lack of help for their

ABILITY 57 children with learning problems. Few parents were will- faced, and where you are today, I think my people will ing to stand up and fight, however, for fear of retaliation. be inspired. I’m looking for a real person with a real Reporters eventually lost interest in my concerns and story of determination and grit, and I know you’re the moved on to the next story, but a small group of parents person for the job. I’ll pay you $3,500, plus expenses.” and community leaders started to organize and question the practices of the Juniata County School District. For A month later, I appeared before this woman’s team. I the most part, their questions were ignored. Then Junia- was nervous, at first, but as time went on, I loosened up ta County changed forever. and began to enjoy myself. At the end of the talk, the group gave me a standing ovation. I flew out of Wichita, In a relatively short period of time, four separate suicides KS, that night, feeling confident and thinking I just of teenage boys from East Juniata High School rocked might want to pursue a career in public speaking. our community to the core. Each of the boys had been having trouble at school. Finally, the good and decent After a bit of research, I learned about a gentleman who people of Juniata County found their voices, stood up, ran a speakers bureau in Hollywood that specialized in and started asking questions about the state of education speakers with disabilities. I called him and, about six in the county. weeks later, he called me back. He wanted to send me to Minnesota to speak at a community college. This college This time, there were too many voices to be ignored. 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 The family of one of the boys who’d committed suicide amount of money offered, so he decided to take a chance filed suit against the school district in the United States on me. District Court for the Middle District of Pennsylvania. The lawsuit stated the young man frequently visited the It proved to be a solid engagement, and the audience principal’s office, routinely pleading for academic and liked me. Soon, the speakers’ bureau began sending emotional help. The suit asserted that the 16-year-old me out more often. I told my personal story to live boy had clearly been denied the services guaranteed to audiences all over the country. Just a few, at first, and him under state and federal law. After his concerns were then more and more, as time went on. I spoke at corpo- routinely ignored, the young man had finally reached rate conventions, colleges, universities, governmental his breaking point. Feeling there was no hope for him, agencies and teacher conferences. I even gave a he used a gun to take his own life, in the living room of keynote address at NASA’s Kennedy Space Center. his family’s home. Attorneys for the school district bris- tled as they vowed to fight the “baseless lawsuit.” But of the 1,000-plus speaking engagements I’ve had since that very first one in Kansas, the one that stands It was obvious—after countless legal depositions from out as the most personally rewarding was on in October many faculty, administrators and former students, such 2003, when I was invited to my old high school to give a talk to a small class of about 20 students who had as myself—that East Juniata High School had long been learning disabilities. an unpleasant and often brutal place for children with learning problems. The depositions made it clear that, if I greeted the class of ninth- and tenth-graders and began you were a kid in need of special help, Juniata County, to share my story. I didn’t sugarcoat it. I gave them all PA, was the last place you wanted to be. the details. I told them what it was like for me, 20-some years ago, sitting in their same seats. I talked to them Under oath, the school’s principal admitted he had, over about their futures and the fact that, if they have a the years, used the school’s fireproof vault as an isola- dream, they should never allow anyone to take it away. tion chamber to punish students. Shortly after this admission, the case was settled out of court for an Driving home, I knew I had helped to bring about the undisclosed sum, and the principal left East Juniata change I had witnessed. But most of all, I realized the time High School after having served 30 years as principal. I put in as a student at East Juniata had not been in vain. It The newly empowered people of Juniata County voted had made me resilient and helped me find my voice. in a new board of education, which worked diligently to bring our schools into compliance with state and federal theamericanstoryteller.com 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 Nelson Lauver

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1 Entrepreneur who set up a company which advocates for 1 Star in “The King’s Speech," Colin _____ and empowers deaf and hard of hearing clients, Moon 2 Boring routine ____ 3 Manhattan neighborhood 4 Foundation that brings strength and joy to children with 4 Satirical magazine life-threatening medical conditions (3 words) 5 R and B singer Green 9 Congress testimony type 6 Won his own show on Oprah’s network, Zach _____ 11 Infamous nurse in “One Flew Over the Cuckoo’s Nest” 7 Problem 12 People to keep up with, supposedly 8 Letterman or Leno 13 “Man __ Fire” Denzel Washington thriller 10 Nevada city 14 It’s what motivates all survivors 12 Famous shark film 16 Small heroes in “The Lord of the Rings” 15 “The _____ “ drama film about a mute pianist and 20 It’s found between vertebrae her daughter 21 Santa sound 16 Put down, slangily 23 Medical problem faced by one of the main characters 17 Temperature controller in “Steel Magnolias” 18 “Thar ___ blows!" 25 Aragorn’s love in “The Lord of the Rings” 19 Road turn 28 Immediately 20 Drops on blades 30 Actress Vardalos of “My Big Fat Greek Wedding” 22 Unwelcome obligations 31 Blind man in “Star Trek, The Next Generation” 23 Guide ___ 34 Well-liked 24 Hard work 35 Founder of Arts and Services for the Disabled, Helen 25 US tennis star, first name _____ 26 Girl from Ipanema came from here 36 Old vinyl record 27 Company that introduced a program to hire more 38 Now displaced by the DVD player people with diabilities and the branches where they 40 American Expressionist painter introduced the program became the highest performing 43 Gala honoring high achieving deaf women (2 words) 29 Innovator 46 Near, abbr. 32 Long and slippery sea creature 47 Interview 33 Campaigned 48 Motocross champ, Ashley 37 After-school social 49 Friendly alien who was persecuted when he came to 39 Life saving technique earth 40 Civil rights pioneer for the disabled, Bob ____ 50 2004 indie film about a high school girl who cannot 41 “Ebony and ___," Stevie Wonder song talk after a traumatic incident 42 Charity affair 52 In times past 44 Anaconda kin 53 The end is not __ 45 Green area 54 After his sister died, he built or supported schools for 49 “I’m a bigshot” quality girls in Pakistan and Afghanistan, Greg ______50 Figure out 51 Jeopardy winner, Jennings 52 Dawn time answers on page 62 ABILITY 61

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EVENTS AND CONFERENCES

74 ABILITY The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corpora- tions, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved.

abilitybuild.org [email protected] abilityawareness.org

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