Howie Mandel Issue

MAGAZINE
VOLUME 2011
HOWIE MANDEL
JUN/JUL
THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 HOWIE MANDEL JUN/JUL 2011
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ABILITY
ABILITY 3
M ANAGING E DITOR
Gillian Friedman, MD
M ANAGING H EALTH E DITOR
E. Thomas Chappell, MD
E DITORIAL D EVELOPMENT D IR .
Pamela K. Johnson
C ONTRIBUTING S ENATOR
U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois
George Covington, JD
Gene Feldman, JD
E DITORS
Dahvi Fischer
Renne Gardner
Regina Hall
Molly Mackin
Josh Pate
David Radcliff
Denise Riccobon, RN
Jane Wollman Rusoff
Maya Sabatello, PhD, JD
Romney Snyder
8
WIN WIN — Tickets to Ride
10
ASHLEY’S COLUMN — Let the Racing Begin!
12
SENATOR HARKIN — Where Are the Jobs?
14
DRLC — Rescue 411
16
BAD BOYS — United Airlines, H&R Block
18
HAMILL — Bodyslamming a Theater Near You
22
FRANKENTONGUE — How I Licked Tongue Cancer
28
PARALYMPICS — A Leg Up on the Competition
32
UNITED CEREBRAL PALSY — The Power of Play
35
ZAMBIA — Advocates for African Children’s Rights
38
RECIPES — Tasty, Cancer-Fighting Dishes
40
HOWIE MANDEL — Showered with Riches
52
DYSLEXIA — Tangled Up in Blues
6O
Paralympic Games Beijing
HUMOR THERAPY — Jockey: A Horse Tale (Pt. 1)
Music Within
6
H EALTH E DITORS
Moses deGraft-Johnson, MD
Larry Goldstein, MD
C ONTRIBUTING W RITERS
Hamill p. 18
Recipes p. 38
Ashley Fiolek
Gale Kamen, PhD
Laurance Johnston, PhD
Andrea Kardonsky
Deborah Max
Myles Mellor - Crossword Puzzle
Paula Pearlman, JD
Allen Rucker
Kristen McCarthy Thomas
Betsy Valnes
W EB E DITORS
Stan Hoskins
Mary Shafizadeh
G RAPHIC A RT /
I LLUSTRATION
ABILITY’s Crossword Puzzle
C O N T E N T S
Howie Mandel interview p. 40
Scott Johnson
Melissa Murphy - Medical Illustration
Anna Blagovidova
P HOTOGRAPHY
Nancy Villere—
CrushPhotoStudios.com
Zambia p. 35
T RANSCRIPTIONIST
Sandy Grabowski
DIRECTOR OF BUSINESS AFFAIRS
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MARKETING/PROMOTIONS
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© Copyright 2011 ABILITY Magazine
the father got the child hooked on cigarettes at
the ripe age of three, in hopes of stunting his
growth. By eight, the boy was up to three packs
a day, and had stopped growing completely,
which pleased his father to no end.
“You done good, mijo,” he’d say. And Felipe
would just smile, flashing his yellow-stained
teeth, trying to suppress an emphysemic cough.
Over time, it was obvious that the boy’s destiny
was to become a jockey. Each night, he would
watch television from the back of the couch,
his butt reared in the air. Every so often he’d
slap the cushion and yell, “Hi-ya! Home
stretch!” His favorite show, of course, was Mister Ed, starring a palomino horse who could
talk; and, it wasn’t unusual to find the boy posing on the front yard, with a lantern in his hand,
his jockey underwear giving him a bit of a
wedgie.
elipe grew up around stables, where his father trained
horses for more than 25 years. But Felipe’s dad was
never considered a success, perhaps because of the
names he chose for his thoroughbreds. (“Laggin’
Behind,” “Trottin Too Much,” and “Too Lazy To Run”
were just a few of his brainchildren.) Even though the
horses more than lived up to their names, the stables
were not well-known, and the elder Felipe yearned to be
taken seriously in the racing world. He longed to be a
somebody who merits mint julips at the happy-hour
price, any time, day or night.
His son would be his ticket to fame, he believed. He
would be groomed to be a jockey. A great. Big. Little.
Jockey.
The elder Felipe had a special relationship with his son,
because he had raised the boy all alone after his wife
was killed in a freak incident years earlier. The wife had
walked in on her husband as he was lip-locked with one
of his prized fillies. According to the elder Felipe, this
was all a misunderstanding. Man and beast were simply
sharing a carrot—getting their antioxidants in, if you
will. But when the wife confronted the filly, an argument ensued. The mamacita fired off a tamale missile at
the home-wrecking horse, which struck the animal in
the nose. Ultimately, the filly got the last whinny, however, as the woman was later found in a heap, with a
huge hoof mark stamped on her forehead. The horse
was put out to pasture, while the wife was buried in a
pasture, after a brief eulogy by the local pastor.
Little Felipe’s love for horses developed early. As soon
as the boy could walk, his father crafted a wooden
horse’s head and stuck it on a broomstick. Both he and
the child would run around the barn with the contraption
between their legs, each making galloping noises.
Afraid that his boy would grow too tall to be a jockey,
6
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On his tenth birthday, the boy’s father took the
little munchkin out to the barn for a surprise. Standing
in front of a new colt, his father said:
“Happy birthday, son.”
“A brand new horse!” Felipe exclaimed.
“No, the horse is mine. But this whip is for you,” Felipe’s
father said, handing the whipping stick to the child.
The whip was not actually new. Felipe had kept it from
his early S&M club days, always vowing to get back
into that hobby when time permitted.
The boy loved the riding crop, even though the colt did
not. From morning ‘til dusk, Felipe rode the colt
through the meadows, racing the wind until the wind
lost. Sometimes he would gallop so fast that he would
literally break wind. Later, he would find a quiet place
to lie down, stare at the clouds and daydream about winning the Triple Crown.
As the boy grew older, he began to feel inferior about his
size. Kids at school teased him, calling him nasty names
like Short Bread or Minnie Meat. Some even taunted him
by leapfrogging over his head. It wasn’t long before the
youngster developed a Napoleonic complex, attempting
to lord over others to compensate for his small stature. He
became a ruthless tiger, attacking anyone who mocked
his size. One day, his English teacher asked:
“Do you know what a tall tale is?”
“It’s a story,” was Felipe’s reluctant reply.
“That’s the short answer, but I’m looking for a little
more,” the teacher said.
Felipe sat quietly as his insecurity mounted. Was this old bag pushing him?
“What’s a tall tale? It isn’t a short story?
You’re a tiny bit off,” the teacher said.
“Come on now. No more small talk.”
Felipe jumped up and charged across the
older woman’s desk, plowing her frail
body into the chalkboard. Eventually, the
alcoholic wood shop teacher came to her
rescue, and peeled the boy off the battered, shell-shocked woman. Staggering a
bit, the teacher carried the pint-size punk
out of the classroom, holding him by the
seat of his pants, the child’s legs flailing
as he yelled, “I’m a big boy!”
Soon after that incident, young Felipe
dropped out of school to concentrate on
his goal of becoming a jockey. As a jockey, he would not be judged, he believed.
Size mattered, of course, only not in the
way it usually does.
Every morning the budding jockey raced
around the track, beating his time from
the previous day. Finally, after a year, his
father said, “Your times are fantastic, now
let’s try them on a horse.” Felipe cheered,
because his feet were killing him—he was
tired of husking his own corns.
When he turned 16, Felipe received a
racehorse from his dad, who spent his
life’s savings on the purchase. As his
father picked glue out of the horse’s
mane, the boy asked where his father had
scored the prized animal. “Walmart,” his
father said, patting the boy on the head.
He didn’t have the guts to tell his son that
the equine was an old Amish get-about,
used to transport peanut-butter pies to
roadside stands.
From the beginning, the fledgling jockey
and the half-ass thoroughbred were
incompatible. Felipe would feed him
sugar cubes only to have them spit back
in his face.
“You wanna piece of me?” the jockey
would sneer as he got near the horse’s
snout.
The ornery animal would rock up on his
hind legs, releasing a disgruntled
“neigh.” And every time Felipe climbed
up on the horse’s back to ride him, the
animal would toss him to the ground,
ABILITY 7
and then stand on the little jockey’s backside as if
to say, “I’m king of the mountain now.”
One day, the pair embarked on a trot through the
country, and the jockey attempted to get the horse
to gallop. Unfortunately the ratty animal wasn’t
going for it. The horse felt it was a lazy Sunday.
(Except it was actually a Tuesday.) Felipe kicked
the horse. Nothing. He whipped the horse. Still
nothing. Finally, he leaned over and whispered to
the creature that there was a bumblebee on his ass.
The horse darted off like a spooked cat. The jockey
had never felt such exhilaration. The wind whipped
through his hair as if Felipe had just eaten a York
Peppermint Patty. Suddenly, the horse stopped on a
dime, causing the tiny young man to fly off its back
and land face first in a steamy mound of manure.
In a fit of rage, the jockey leaped to his feet, squaring off with the cantankerous animal. “What’s up
with that?” the boy asked.
The horse rocked his head back and snickered as it
flashed its big pearly teeth, which really set the little
guy off. Felipe felt he was being dissed by the horse,
so he slapped the bit out the beast’s mouth. The two
were now nose to nose, staring one another down.
“Pig,” the jockey snapped, just before the horse
snorted and then pushed the jockey back with his
muzzle, knocking him on his itty-bitty keister.
Felipe stood up, his tiny chest heaving. He grabbed
the hairy monster by the ears, wrapping his little
legs around its neck. The horse didn’t appreciate
the intimacy. In fact, a feeling of claustrophobia
washed over him, and he darted off, sporting a
jockey necktie.
The bumpy ride caused the jockey to lose his grip
on the horse’s ears, but luckily his ankles were
locked around the animal’s nape. The only hitch
was that now his head was dragging against the
ground.
“Whoa, boy!” the little guy screamed as grass
clumped in his hair. The frazzled horse continued
to rip through the forest, dash over the rocks, leap
over the logs and splash through the muddy stream,
as the boy’s head—ba-dump, ba-dump-dump—
took quite a battering. The rampage finally ended
at a stream, where the horse stopped for a little liquid refreshment. Felipe fell into the river and was
swiftly carried downstream, tossed wildly, to and
fro, through the rushing rapids.
Find out what happened to Felipe and the ratty
horse in Part II of “The Jockey”
by Jeff Charlebois
“Ham on
a Roll”
8
ABILITY
in for Our Vets
Recently, ABILITY Magazine joined forces with Window
World, the nation’s largest replacement-window company,
to sponsor the “Win-Win” Competition. The month-long
promotion attracted more than 4,700 entrants, from which
six lucky semifinalists were chosen to attend the 100th
anniversary of the legendary Indianapolis 500.
As in years past, winners were selected by region—Northeast, Southeast, West, Central, and Great Plains—but this
year’s competition added a new category: one specifically
for Wounded Warriors, active or retired military veterans.
Nearly 1,000 active duty or US military veterans threw
their dog tags into the ring, a point of pride for ABILITY
Magazine’s Editorial Development Director, Pamela K.
Johnson.
“Veterans have sacrificed so much for this country,” Johnson said. “We at ABILITY Magazine are proud to have lobbied for a sixth category in this contest, one that allows a
veteran to enjoy the race and be a part of a great Memorial
Day celebration. It seems a fitting tribute to their service.”
This year’s Win-Win semifinalists were veteran Gary
Boltenhouse of Chillicothe, OH; Kathryn Geiger of Temperanceville, VA (Northeast); Carlos Hayes of Hueytown,
AL (Southeast); Kristi Fisher of Thornton, CO (West);
Geralyn Enriquez of Houston, TX (Central); and Sue
Drake of Olathe, KS (Great Plains).
Each semifinalist and a companion received complimentary travel, accommodations and tickets to the Indianapolis
500 in Indianapolis, IN, along with VIP access to other
Memorial Day weekend festivities. If the Window Worldsponsored car, driven by John Andretti, had finished in
first place, one lucky semifinalist would have gone home
with $1 million. But for all involved, the opportunity to
attend the race proved its own reward.
“As Window World, ABILITY and Andretti Autosport celebrated the 100th anniversary of the Indy 500, we were thrilled
to have six very special VIP fans with us to share in the
excitement,” said Dana Deem, president of Window World.
“ABILITY, the world’s leading magazine for health, disability and human potential, will continue to seek out partnerships that support our community, as well as spread our
larger message of inclusion,” said Johnson.
windowworld.com
ABILITY 9
y racing season has officially started, so all of
my practice and training is behind me, for now.
My only focus is on my racing!
The time has really flown since I started practicing for
this year. I was involved with the Red Bull commercial,
I did a short video skit with Drama (from the MTV
show Fantasy Factory), and I’ve done quite a few interviews for different magazines—including the Red Bulletin, which is a Red Bull magazine from Europe that is
now being published here in the United States!
to Colorado! As if that weren’t enough, the X-Games
are right in the middle of everything! I’m really looking
forward to those.
Hope to see you all at the races!
Since my last column, I’ve also done a crazy photo
shoot for one of my new sponsors, Cycle Nano. Participating in that shoot was wild and a lot of fun! The
owner of Cycle Nano, a guy named Ron, is really great
and makes some fantastic cleaning stuff!
In South Carolina, I stayed at a place called ClubMX.
It’s a great track, owned by Zach Osbourne, a professional motocross racer, and Brandon Hass. They are
great people and so welcoming and fun to be around.
My dad has worked things out so I really don’t have to
travel as much this year as I usually do. During my
training, I tried to avoid lots of running around and flying so I could focus on being ready for the start of the
season. I have changed some of my training programs
(it’s a good idea to change some things, every now and
again!), and am having fun riding and training again.
I’ve realized how important it is to keep having fun but
to work hard, too. My dad always tells me, “Work hard
now and play later!” Since my season has already
begun, I am trying to keep doing the same things I’ve
been doing for the past three months. In other words, I
am trying my best—that’s all I can do!
This year’s racing season started off in California. Now
we are headed to Texas. After a short break, I’ll be off
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ashleyfiolek.com
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.
WE MUST IMPROVE OPPORTUNITIES
FOR PEOPLE WITH DISABILITIES
In crafting the ADA, our goal as public
servants was to create more opportunities
for people like my brother—and for all
people with disabilities—to demonstrate
what they could do. Too many Americans with disabilities remain held back by public or private fears, myths
and stereotypes associated with their differences.
Dear ABILITY readers,
Recently, I gave the keynote address at the US Chamber
of Commerce’s Corporate Disability Employment Summit in Washington, DC. During my talk, I sounded the
alarm on a disturbing trend: more than two thirds of
Americans with disabilities are without a job, and adults
with disabilities are leaving the labor force at more than
10 times the rate of adults without disabilities during
this recession. This is unconscionable.
I asked the CEOs in attendance to help fulfill the
promise of equality made by the Americans With Disabilities Act (ADA), by raising the number of workers
with disabilities in the workforce to six million by the
year 2015. Having grown up with a deaf older brother,
Frank, I am particularly proud to have played a leadership role in crafting the ADA. My involvement in that
endeavor has been a highlight of my career.
Like a lot of people with disabilities of his generation,
my brother experienced discrimination and faced low
expectations. It took a long time for him to find a job
best suited to his abilities. Eventually, he landed a job at
a manufacturing plant in Des Moines, working for Delavan Corporation. Mr. Delavan had decided he wanted to
hire people with disabilities, and my brother was eager
to work for him.
Frank became a drill press operator, making nozzles for
jet engines. It was a great job, and there was never any
doubt Frank took enormous pride in his work.
12
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I remain committed to doing everything in my power to
advance the four important goals set forth by Congress
with the establishment of the ADA: equality of opportunity, full participation, independent living, and economic self-sufficiency.
My central priority, as we enter the third decade since
implementation of the ADA, is to improve employment
opportunities and outcomes for people with disabilities.
Thanks in large part to the ADA and this country’s special education laws, we are now producing the best-educated people with disabilities in the history of the United States. And yet, while the majority of Americans
with disabilities would like to be working, more than
two thirds are not.
In the last two years alone, unemployment has proven
disproportionately higher for workers with disabilities
than for workers who don’t have them. The size of the
disability workforce has shrunk from 5.3 million in
March 2009 to about 4.9 million workers this year,
according to data from the Bureau of Labor Statistics
(BLS). Compared to broader labor-force trends, this
drop illustrates that more than one in three American
adults who have left the labor force in the last two years
have been people with disabilities.
Although this disturbing trend has not received much
attention from policymakers or from the public, it carries with it a momentous budgetary and social cost. As
more Americans with disabilities leave the workforce,
Since 1995
the number of applications for Social Security Disability Insurance benefits increases, growing from an average of 200,000 new applications per month at the
beginning of 2008, to roughly 250,000 per month by
the end of 2010.
If we work together, I believe we can increase the number of adults with disabilities participating in the labor
force to six million over the next four years. An expansion of the disability workforce by more than 1,000,000
workers in the next few years is achievable if we are
willing to get serious about making it happen.
When I spoke to CEOs at last month's US Chamber’s
Disability Summit, I asked for ideas and collaboration
so that our policies might produce real results on the
ground—results that mean jobs for people with disabilities and a strong, talented and loyal workforce for
businesses. If federal policies stand in the way of these
efforts, I want to hear about them. Making a measurable impact on disability employment numbers is one
of my top priorities, and will remain so as long as I am
in the Senate.
Sincerely,
Senator Tom Harkin
Senator Tom Harkin (D-IA) is Chairman of the
Senate Health, Education, Labor and Pensions Committee
harkin.senate.gov
ABILITY 13
failing to incorporate the needs of people with disabilities into the city’s disaster preparedness planning. The
Disability Rights Legal Center (DRLC) represented the
plaintiff during the legal process.
“The city’s practice of failing to address the needs of
individuals with disabilities discriminates against such
individuals by denying them meaningful access to the
city’s emergency preparedness program,” Judge Consuelo
B. Marshall determined in her ruling. “Because of the
city’s failure to address its citizens’ unique needs, individuals with disabilities are disproportionately vulnerable
to harm in the event of an emergency or disaster.”
s recent events have demonstrated, natural disasters can have a particularly devastating—and,
in many cases, lethal—impact on the disability community. Despite the best efforts of the US Civil Rights
Divisons, this country is arguably no more prepared to
meet the needs of residents with disabilities during a
disaster than it was during Hurricane Katrina nearly
six years ago.
In the aftermath of Katrina, Benilda Caixeta, a quadriplegic resident of New Orleans, tried for two days to
seek refuge at the local Superdome. Despite repeated
phone calls to authorities, she was found dead in her
apartment, floating next to her wheelchair. No one had
come to her aid.
Though a definitive number of people with disabilities
killed by Hurricane Katrina remains unknown, a 2006
White House report revealed that 71 percent of the storm’s 1,330 victims were more than 60 years of age. This
data suggests people who needed special care suffered
disproportionately in a time of crisis.
In February 2011, a Los Angeles federal court reached a
landmark decision that carried national implications: the
City of Los Angeles was found to have violated federal
law, including the Americans with Disabilities Act
(ADA), by failing to meet the needs of residents with
disabilities in planning for natural and other disasters.
This recent ruling is the first such decision in the United
States.
The lawsuit—Communities Actively Living Independent and Free and Audrey Harthorn vs. the City Of Los
Angeles and the County Of Los Angeles—determined
the city violated the rights of people with disabilities, provided under the ADA and other federal and state laws, by
14
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Although Los Angeles has been no stranger to serious
natural disasters—including a major earthquake in
1994, and wildfires in 2008 and 2009—the city still
lacks adequate disaster planning for people with disabilities. Accessible emergency shelters, plans for providing
services and medication at shelters, accessible transportation and evacuation assistance, as well as communication services that are available and accessible to
people with a wide range of disabilities are minimal or
entirely absent.
A recent series of disasters, including a tsunami in Japan
and tornados and flooding across the Midwestern and
Southern United States, underscores the need for better
emergency preparation. During Hurricanes Katrina and
Rita, many people with disabilities, including a number
of seriously ill seniors, were left to die because of a lack
of planning for their emergency care.
These and other such tragedies prompted the February
lawsuit, a legal effort to make future natural disasters
less hazardous for people with disabilities. Marcie Roth,
executive director of the National Spinal Cord Injury
Association, hopes that February’s federal ruling prompts
other cities, counties and states to examine their own levels of emergency preparedness and avoid or mitigate loss
of life among their populations.
“Benilda need not have drowned,” Roth told the US
House of Representatives Bipartisan Disabilities Caucus
in 2005, after she had personally placed calls to prompt
the New Orleans woman’s evacuation during Katrina.
“People with disabilities are not in good hands.”
by Paula Pearlman
Paula Pearlman is the executive director of the Disability Rights
Legal Center, and a visiting associate professor of law at
Loyola Law School in Los Angeles.
disabilityrightslegalcenter.org
ABILITY 15
T
he Equal Employment Opportunity Commission
(EEOC) enforces federal laws prohibiting discrimination in employment. The following are
recent cases brought about from the EEOC.
WELCOME MAT FOR MADISON
An Oregon school district has been ordered to allow
Jordan “Scooter” Givens to bring his trained autism
service dog, Madison, to school with him.
For nearly three years, Scooter’s parents’ efforts to get
permission for Madison to accompany Scooter to
class in the Hillsboro School District had been fruitless. But after US Attorney Dwight Holton and a
senior attorney from the Civil Rights Division met
with the district’s superintendent, the school agreed to
allow Scooter to be accompanied by the service dog
for a trial period. A highly trained animal, Madison
provides important assistance to Scooter, recognizing
when the student is about to behave in a manner that
might endanger him, and then distracting him to prevent the behavior.
“Service animals assist students with disabilities across
the United States every day of the school year without
incident,” said Thomas E. Perez, an attorney for the
Civil Rights Division. “Fears, generalizations and
stereotypes are simply insufficient to deny access to a
student’s service dog, and the department will continue
to provide school districts with technical assistance to
make sure they comply with the Americans with Disabilities Act (ADA).”
“Kids with autism deserve the same opportunity as the
rest of us to grow and learn,” said Holton. “Scooter’s
service dog will help him grow up to meet his full
16
ABILITY
potential, which is something we should all expect and
hope for our children.”
The ADA requires schools and other public entities and
businesses to allow individuals with disabilities to be
accompanied by service animals. Service animals cannot be denied access except in rare instances in which
their actual behavior poses a direct threat to the safety of
others or results in a fundamental alteration of the
nature of a program.
ada.gov
nh.gov/disability/information/index.htm
hsd.k12.or.us
UNITED AIRLINES DIPS WINGS United Airlines will pay $600,000 to a group of reservation agents with disabilities to settle a federal lawsuit.
The complaint arose from employees who charged that
the carrier violated the ADA by refusing workers with
disabilities reduced hourly schedules as a reasonable
accommodation, according to the EEOC.
The deal also entails that United end its blanket policy
against reduced hourly schedules, while providing
training to staffers who administer the company’s reasonable accommodation process, according to the
terms of a three-year consent decree approved by the
court.
Prior to 2003, United permitted reservations sales and
service representatives to work reduced schedules to
accommodate employees’ various disabilities, including multiple sclerosis, carpal tunnel and myasthenia
gravis. By suddenly abolishing their long-standing
practice and policy, United required all reservation
sales and service representatives who could not work
full-time either to retire or to go on extended leave.
Once the leave expired, the employees were terminated, a practice that violated the ADA, the EEOC noted.
“A sweeping policy that disregards individual circumstances doesn’t give someone like me a chance to do
my job,” said one employee who maintained a
reduced-hour schedule for 23 years prior to the policy
change. “I took my case to the EEOC, and I’m glad to
know that United is going to stop its blanket policy on
work hours.”
Michael Baldonado, an EEOC representative, agreed
that decisions about disability accommodation must be
made on a case by case basis. “A blanket policy that
takes options off the table by setting minimum work
hours not only violates the ADA,” Baldonado said, “it
also may have a negative impact on the company’s
morale, productivity and bottom line.”
With 52,000 employees worldwide and nearly 3,000
flights a day, United Airlines is one of the largest international carriers in the United States.
united.com
eeoc.gov
H&R BLOCK HAS TO PAY
H&R Block Tax Services and its parent companies must
pay $25,000 in damages and penalties because they
failed to offer equal access to services for individuals
who are deaf or hard of hearing at more than 11,000
owned-and-franchised offices nationwide, according to
the US Justice Department.
The settlement resolves an ADA complaint filed by an
individual who is deaf. It requires H&R Block to furnish
appropriate auxiliary aids and services as necessary to
afford a person who is deaf or hard of hearing equal
access to the goods, services and accommodations made
available to others who patronize the company.
“By signing this agreement, H&R Block has affirmed
its commitment to providing effective communication
with people who are deaf and hard of hearing not only
at their tax-preparation offices in San Antonio, where
the complaint originated, but at their locations across
the country,” said Thomas E. Perez, an attorney for the
Civil Rights Division. “The agreement will ensure that
individuals who are deaf or hard of hearing have equal
access to tax-preparation services.”
The settlement requires that H&R Block provide
such auxiliary aids and services as qualified signlanguage interpreters when needed to ensure effective communication.
The company must also adopt and enforce a policy on
effective communication with individuals who are deaf
or hard of hearing for all H&R Block offices nationwide, post the policy on the company website and in
employee manuals, and distribute the policy to current
and new employees and contractors.
H&R Block will pay $5,000 in damages to the individual who filed the ADA complaint, as well as a $20,000
civil penalty.
The ADA prohibits discrimination against customers
with disabilities by businesses that serve the public.
These entities must provide equal access to customers
who are deaf or hard of hearing, as well as to individuals who are blind or have low vision.
hrblock.com
usdoj.gov
SCHOOLS LEARN LESSON
Nobel Learning Communities (NLC), which operates
a nationwide network of more than 180 schools, has
agreed to pay $215,000 to settle a discrimination
lawsuit brought by the Justice Department. The complaint alleged that NLC violated the ADA by excluding children with disabilities from its programs. The
children in question had autism spectrum disorder,
Down syndrome, Attention Deficit Hyperactivity Disorder, and global developmental delays. NLC denied
the allegations.
“It is illegal, under the ADA, to discriminate against
children with disabilities,” said Thomas E. Perez, an
attorney for the Civil Rights Divison. “Just like public
schools, private schools must make reasonable modifications of policies to permit children with disabilities to
participate fully in the programs they offer. This agreement ensures that children will not be denied quality
preschool and other educational opportunities based
upon their disabilities.”
NLC has adopted and will implement a formal policy
to ensure it will operate its programs, facilities, and services in a non-discriminatory manner and in compliance with Title III of the ADA. The company will also
publicize its disability non-discrimination policy to its
principals, teachers, and other staff at all facilities within its network. Finally, it will post this information on
its main website, as well as on its member schools’
websites.
The company operates under a variety of names, including Chesterbrook Academy, Merryhill School and Evergreen Academy. Its campuses, which range from
preschool to high school, can be found in more than a
dozen states around the country.
nobellearning.com
ada.gov
ABILITY 17
director yells “Cut!” as his deaf actor continues to
run up the street, the actor unaware the scene is
over. This is a common occurrence on the set of
of Hamill, a film for which members of the hearing and deaf worlds collaborated to create a project celebrating both.
“We wanted to make sure deaf culture was portrayed
properly,” said Eben Kostbar, a writer and producer on
the film he describes as “a classic sports underdog story,
in which the lead character overcomes many challenges
to reach his ultimate goal.”
After wrapping production shortly before last fall’s AFI
Festival—where it won a $5,000 award—Hamill has
picked up accolades at the Philly Cinefest, as well as at
the Cleveland, Miami and Florida Film Festivals. At
each screening, the film’s creators seek to keep the buzz
revved up, as they close in on a coveted theatrical distri18
ABILITY
bution deal that could give their film maximum exposure. Through it all, the filmmakers remain optimistic
about Hamill ability to connect with viewers.
“The next several months should solidify it,” Kostbar
said. “We want to make sure our efforts are done properly, not in a rush. We want to partner with a distribution
company and see what this film can do for audiences at
large: for deaf people, for hearing people, and for deaf
education.”
The project is based on the life of Matt Hamill, a star
wrestler for the Ultimate Fighting Championship (UFC)
who grew up deaf in the 1970s, before deaf education
was a well-established known. Raised, in part, by a
grandfather who wanted him to be mainstreamed, Hamill
hung with a hearing crowd, and learned to read lips. But
when he attended college at Purdue University, the unfamiliar environment proved a poor fit for him socially.
Theodore Conley plays
a young Matt Hamill in
the biopic Hamill.
It was not until Hamill transferred to Rochester Institute
of Technology (RIT), and made his way solidly into the
deaf community, that he became more comfortable with
himself and with getting involved in student activities.
His newfound willingness to participate—as well as a
stint as a bouncer—prompted Hamill to try out for the
wrestling team, where he emerged as a real contender.
“He was the first deaf person to actually win an NCAA
wrestling championship, three years, back to back,” said
Kostbar, who was drawn to the story after watching
Hamill on The Ultimate Fighter, a reality TV show.
Though he trumpets the uniqueness of his project, Kostbar knows that deafness is not foreign to the feature film
marketplace. Citing multiple influential films about the
deaf community that have come before his own, Kostbar
points to 1986’s Children of a Lesser God, for which deaf
actress, Marlee Matlin, won an Academy Award. But
Kostbar says that movie remains controversial in the deaf
community because Matlin voiced everything she said,
instead of using American Sign Language (ASL). Hamill,
Kostbar points out, features a great deal of signing and is
also captioned, allowing hearing and deaf audiences to
enjoy the film together.
While researching Hamill, Kostbar attended one of the
wrestler’s many speaking engagements. During one such
event in Fremont, CA, Kostbar and co-writer Joe McKelheer stayed for the whole weekend, where the experience proved eye-opening.
“Before that, I had had very little exposure to deaf people and culture,” Kostbar said. We were at a K-12
school, and most of the faculty was deaf, all of the students were deaf, and we were encouraged to ‘turn off our
voices, and try to sign for the weekend.’”
Their immersion in life without sound not only helped
Kostbar and McKelheer better understand the world
about which they were writing, it also helped them build
trust with Hamill. Though Kostbar admits he’d originally thought, “here’s an opportunity to write and produce
a vehicle for myself,” he soon realized his plan to play
the role of Hamill didn’t feel quite right.
“As I went further along, and consulted with deaf people,
I realized that [playing Matt] was not the way to go,”
Kostbar said. “Deaf actors are not really given that many
opportunities. I wanted this project to reach people, to
inspire people, and so I realized I needed to step away
from this role.”
Kostbar ultimately decided to take a lesser part in the
film—that of Hamill’s assistant coach at RIT—so he
could create an opportunity for a deaf actor to take the
lead. Kostbar hired a deaf co-producer and set about
coming up with fallback plans for circumstances in
which walkie-talkies and yelling “Cut!”—standard
operating procedures on a typical shoot—would fail to
bring the desired results.
For much of the production, Kostbar avoided entering
into a formal contract with Hamill, because he didn’t
want the star athlete commited to the project until he was
sure Hamill would be comfortable with the results. The
men settled, instead, on a handshake agreement. Shortly
thereafter, Kostbar and McKelheer set to work revising
ABILITY 19
A rushing tide metaphorically captures Hamill’s
feeling of confusion and isolation in Hamill.
the script, seeking to capture what Kostbar calls “the
heart of the story” while showing passages to Hamill as
they felt each was ready to be read.
Throughout the creative process, Kostbar and McKelheer traded responsibilities, back and forth: one writing
new material, and the other trying to match it in tone
and quality. The script went through 75 rewrites before
its collaborators were satisfied. Finally, they held their
collective breath as Hamill read the finished product.
Hamill, his friends, and his family were all pleased.
With the script complete, the team turned its focus to
budgeting. They set the cost of making the film at somewhere south of $5 million, which left them with the unenviable task of searching for investments during a recession—a particularly challenging undertaking, as the project boasted no stars.
The film’s subject matter was also of little help: the
premise of a deaf wrestler who learns to accept himself
didn’t scream summer blockbuster. But the team
remained resolute and hopeful, as Hamill’s star continued to rise in the UFC. Though, for three years, several
prospective investors failed to back the project, Kostbar
and McKelheer finally knocked on the right doors: those
of the famed Farrelly Brothers (whose films There’s
Something About Mary and Stuck on You have been
praised and criticized for their humorous portrayals of
disability), and of former football giant Jim Kelly of the
Buffalo Bills. Investments from such high-profile names
helped to make the bumpy road of filmmaking a little
smoother.
Hamill even invested in the project himself, which came
as little surprise to his collaborators. “He wanted to see
the film get made,” Kostbar said. “He’s a humble, easygoing person. When he goes to signing events, and commits to be there a certain amount of time, he always
stays longer.”
20
ABILITY
On set, director Oren Kaplan faced an unusual set of
challenges in bringing the film to life. Deaf actor Russell Harvard, who was cast in the role of Hamill, had
never before wrestled, and needed to be taught the ins
and outs of life in the ring. Multiple highly physical
takes, along with the effort required to communicate
with a hearing director, sometimes proved exhausting
for the young lead.
Today, as they seek a theatrical release, the team behind
Hamill has secured deals for video-on-demand, as well
as DVD distribution. The filmmakers plan to tour their
movie throughout deaf residential schools, (two of
which are located in every state of the union) as well as
on deaf cruises and at deaf expos. Hamill himself plans
to attend many of these events, lending his star power to
the marquee.
Though having begun his career as an actor, Kostbar
continues to evolve as a writer-producer. Film Harvest,
his production partnership with McKelheer, produced
2009’s Godspeed, which was awarded the jury prize at
CineVegas Film Festival and is currently available on
DVD and iTunes. The company is producing other
films, as well, including Free Samples (a dramedy featuring Jesse Eisenberg of The Social Network) and The
Thompsons, a vampire thriller.
In the process of pulling together Hamill, the filmmakers learned a film is not unlike a wrestler—sometimes it flipped them or pinned them to the mat. But
by crafting the right script, getting a great cast, and
reining in the actor who’s about to blitz into the next
zip code, it ultimately proved possible to put the film
in check.
by Pamela K. Johnson
hamillthemovie.com
ABILITY 21
My discovery that drinking is el
numero dos cause of oral cancer
comes as beyond a shock. Why are
bottles not covered in Surgeon General warnings? Okay, they are, but those
warnings are usually about the dangers of drinking while pregnant. If a
bottle of Captain Meyers had the
warning, Drinking rum on a frequent
basis can lead to having half your
tongue removed and replaced with
skin and fat from your wrist, believe
me, I would have been all ears.
FIRST THINGS FIRST
I meet with my surgeon, Dr Oh, who
tells me my operation will take
approximately 10 hours, including
five hours to remove what I’ve got,
and five hours to install what I’m getting. I will be sedated for some time,
I’m told.
n the final days of 2010, Ran Michels, a retail store
manager in Southern California, had half of his
tongue removed. It was then reconstructed using
skin and flesh from other parts of his body. The
following is Michel’s journal of his battle against
cancer and his experience with treatment.
A CRASH COURSE IN CANCER
Like starting a new job, being diagnosed with cancer
entails having to learn the lay of the land. It’s only been
a couple of weeks since my diagnosis, so I’m no expert.
I do, however, gather more information every day. If
you or someone you know was recently diagnosed with
cancer, please feel free to benefit from my knowledge.
(Spoiler alert: if you drink alcohol, you might not like
one of the lessons I had to learn).
Day one. Doctors grill me: “How did you get this
growth?”, they ask me over and over again, trying to
trick me into different answers. This question-andanswer process is not unlike those “surveys” you’re
given when applying for a retail job—the surveys that
peck away with such ridiculous questions as, “if your
grandmother was shopping at an art store and put a tube
of paint into her purse, would you say anything?”
When you have cancer of the tongue, doctors ask a bunch
of different questions to find out how much you really
smoke and/or drink, since alcohol is the number two
cause of oral cancers. I don’t drink all that much, even
though I make amazing booze balls! (I rarely eat them,
though. I didn’t drop almost 90 pounds by scarfing down
plates of pastries filled with tequila and cognac!)
22
ABILITY
There is an old joke about the reason
patients are called patients. I don’t
remember the whole thing, but the point is that you
must be patient while waiting for your doctor to get anything done. Or maybe the joke was about how long you
had to wait for your doctor to even see you. Who among
us hasn’t had the irritation of making a 9:30 doctor’s
appointment, only to sit in the waiting room for 45 minutes to an hour?
On a typical doctor’s visit, a nurse moves me to the
examination room, and on the way down the hall I notice
three or four other patients, waiting. I briefly make eye
contact with them, and they roll their eyes as if to warn
me that I’ve now entered the real waiting room.
Another 45 minutes pass, and the nurse pops in to apologize and let me know the doctor will be with me
“shortly.” I begin to wonder if the doctor is even in the
building. I become irritable, and consider calling my job
to let them know that I’ve been kidnapped by the medical profession. I expect that sort of call will be met with
sympathy, because everyone in the world, including
bosses, has been there and completely understands.
Finally there is a quiet rap on the exam room door, and
my doctor appears, all cheery as if I haven’t been waiting more than two or three minutes. He asks why I’m
there, listens to my lungs, and runs from the room with
instructions to pick up a prescription from the nurse.
Time spent waiting: all morning. Time spent with doctor: five minutes.
But this is no typical doctor’s visit. If your five-minute
encounter with the doctor reveals something “troublesome,” you won’t be waiting around doctor’s offices
anymore. You’ll be ushered right past the other jealous
patients, who would in no way trade places with you if
they knew the real reason for your VIP treatment. The
doctor keeps his appointment times and spends as much
time with you as needed, answering all of your questions. You suddenly find yourself longing for the days
of sitting around the waiting room, bored and flipping
through a mangled copy of Better Homes and Gardens.
I know time is of the essence when dealing with cancer,
but it would be nice to have just a moment to take a breath
and think. Now I don’t have the patience I developed over
the years, waiting on doctors. Now I’m just a patient.
“THE BEST LAID PLANS...”
We all know this saying, and yet we go on, day-by-day,
continuing to plan. My plan was called “Sexy by 50.” It
started out based on something that my dear friend,
Cynthia, once said: don’t allow yourself to turn 40 and
not be sexy. Well 40 had come and gone, and I hadn’t
heeded her advice. I found myself almost 45 years old,
and 90 pounds overweight. I made a promise to myself
that I would not turn the big 4-5 weighing the big 2-0-0.
Weight Watchers helped me shed the weight. Still, sexy
managed to elude me. Sure, I was in the best shape of
my life, but I just couldn’t manage to see myself as
sexy. Being diagnosed with cancer didn’t help. There is
nothing sexy about that! Having cancer and being sexy
at the same time is just not doable.
The light at the end of the tunnel for me is this: I’m not
yet 50, so I’m sticking to my plan to be cancer-free and
sexy for my big day. Yes, I’ll have a couple of new scars,
but scars can be sexy: just look at Joaquin Phoenix! For
those with truly diverse tastes, I’ll have a cute, two-tone
tongue. Hey, I’m going to make this work!
The reality is, sexy is a state of mind. I’m not there yet,
but I get glimpses. I saw myself in a mirror at the theater
last month and realized I looked damn good. I’d call that
a step in the right direction. Years ago, while taking to my
dad, I’d informed him that I had discovered I was masculine. “How’d you discover that?” he asked.
“I changed my definition of the word,” I had said. I was
smart enough in my 20s to realize there were different
types of masculinity, and now, in my late 40s, I realize
there are different types of sexy. I’m going with it.
On Monday, when they remove the tumor—and the half
of my tongue in which it’s embedded—I will no longer
have cancer! Now that’s sexy! And survive cancer I
will. So, in a couple of years, when you see this handsome guy with green eyes, spiky grey hair and a slim
physique, you just might say: Damn, he’s sexy!
COLD FEET
It’s just 18 hours until my surgery and, like many people
facing a life-changing moment, I have cold feet. Actually,
I’m having a full-blown anxiety attack. Talk yourself off
the ledge, I keep telling myself—and, little by little, it’s
working. I have a wonderful care team. My partner,
Ken, is amazing. I have a great surgeon, whom I’d
Googled to check out. My friends and family are standing by, to provide whatever I need, whenever I need it.
So, really, what is the problem here?
It’s sort of like that nagging feeling you get when you’re
driving to work and you begin to wonder if you’ve left
the stove on—times 1,000!
This is my life we are talking about here, and I am facing a 10-hour surgery, during which half of my tongue
will be removed and replaced with a flap of skin and fat
from my wrist. Oddly enough, I’m not afraid of the
surgery. I’m afraid of the anesthesia.
The symbolic “stove” I have left on represents the loose
threads of my life. The possibility I could die tomorrow
afternoon because some careless anesthesiologist is daydreaming about his date from last weekend freaks me
out about all of the things I might have left unsaid.
I love to talk. If my mouth were a car, I would have a
pile of tickets for cutting people off, driving over the
speed limit, and running red lights. But I am faced now
with the truth that there were many times when, instead
of listening to what someone was saying to me, I concocted what I was going to say next to him. When I cut
Ken off, which happens pretty much daily, he gets
pissed and stops talking to me. But for some reason,
that hasn’t really corrected my behavior.
If I consider my condition from a metaphysical standpoint, I
think I have cancer of the “talking too much and listening
too little” variety. What better way for the universe to force
me to listen than to still my tongue for a while? Listening is
a skill I plan to learn over the next several months, because
not learning it could have serious consequences!
Every major event, no matter how difficult, has the
potential to make you a better person. A cancer diagnosis
is no different. I choose to keep my eyes and ears open,
in the hope that I’ll learn whatever lessons are in store
for me. I intend to use that information for its highest
good and be transformed into my new, higher self.
Looking back, it is clear to me now that just calling to
say “hi” to loved ones trumps all the calls I made to tell
them I got a raise at work, or that I just bought a new
car. The list of people I want to phone and tell how I
feel about them grows and grows and grows, but my
time to talk to them has run out. How will Ken ever
know I have cherished every single second of our relationship, even when I wanted to kill him? How will
Steve and Ruthie, Ken’s mom and dad, know they have
become my parents too? How will my friends know
how cool they all are? And how will my dad know I
could have not asked for a better father?
ABILITY 23
WHAT THEY SAY, WHOEVER THEY ARE
It’s post-surgery, and I’m typing this with a splint on
one arm, since my arm is where doctors got the raw
materials for my new tongue.
People refer to cancer as the “C” word. We say cancer is
frightening. We drive past hospitals, only knowing what
we’ve seen on Grey’s Anatomy. We live our lives in fear,
not speaking the “C” word, lest we bring a pox upon our
house. We give to cancer charities, we do walk-athons—
and for what?
I hate to admit this, but I always thought about breast
cancer as a little “lump” that you could just cut out.
What’s the big deal, right? Now I feel as if I have paid
the high price for both my lack of compassion and my
ignorance.
When the doctor first told me what I was facing, I wanted to say, “Get it out. Move.” That’s how I went into the
treatment process: eager. Eager for the whole thing to be
over. Today, I probably would have lingered, gone to a
beach and cleansed myself in the Pacific. Gone to New
Orleans for a quick beignet and a soothing stroll along
the Mississippi River. There are about a thousand things
I should have done, because in my ignorance I didn’t
know the truth of what was about to happen. Here’s the
real deal:
though I’ve come to understand that this is a luxury.
None of them spoke English as their first language, and
all had heavy accents. (And there I was, with no tongue,
unable to speak at all). By day two, I was allowed to
sleep for two hours at a time, still plugging away at the
morphine drip. After my dear friend Theresa paid a visit
and turned into a black foam demon, I decided to get off
the drugs. But now the pain is freaking me out.
TOUGH LOVE I stopped pushing the little button and requested to be
taken off all morphine, altogether. The light started to
shine through the corners of my drug haze. Nurses,
who had hovered around me during my first 48 hours,
were nowhere to be found once they’d removed the
catheter. Regular suctioning of the tracheotomy that
had been installed in my throat drummed up images I
had vowed to forget during my mother’s last hours.
I couldn’t help but remember my mother’s helplessness,
and the weakness and fear she had felt, when she was
not able to breathe for even a couple of seconds. Finally,
Lew, one of my nurses, informed me that I needed to get
up and walk. My road to recovery was going to be
walked by me alone. Lew let me know she was busy,
and that I, too, needed to get busy healing myself. She
also mentioned that when she had undergone a serious
surgery, she had not taken painkillers but instead kept
walking the halls until her release. This woman knows
something about getting better!
When my partner, Ken, walked into the room, my first
words of the day—all written down—were that I needed
a walk. I was helped up, walked around a short while, and
when I returned to the bed, I felt better than I had in days.
Walking therapy works! I vowed to myself to keep at it. I
bugged all my friends who came to visit to walk me, as I
had to be assisted. Yes, there was discomfort, but amazingly, no actual pain.
Doctors removed half of my tongue and replaced it with
a graft, which is basically a tongue created out of other
body parts. After surgery, I had two IVs. I remember the
pain of coming back to consciousness. Hey, you’re hurting me. Why are you hurting me? I remember my bed
being rolled around a maze of walls and into an elevator. The volume of the ride was cranked up by the hallucinogenic effects of the morphine. (They need to come
up with some pain medications that don’t have that
effect.) This was a doubly bad trip.
Each new corner was a new entity, and sometimes a
demonic one. Finally, in my room, there was no sleep to
be had. People prodded me constantly, checking various
items on their hourly schedules. I was given a morphine
pump that my nurse called “my new best friend.” I was
told I could push the button every ten minutes for liquid
relief. I watched the clock, which seemed frozen in
time. Though I pressed the pump, relief never arrived.
For the first two days, the nurses were completely mine,
24
ABILITY
On my fourth night in the hospital, I was placed in my
own room, just down the hall from the intensive care unit.
The nurses in my new room ran the gamut from sweet to
simply a warm body in a uniform. I actually preferred the
“bare minimum” nurses: they ignored the order for assisted walks and let me walk on my own. I figured that there
were wheelchairs just around each corner, and that I
could always have a seat if I ran out of breath.
My rude awakening came when I failed to remember
that I was on a liquid diet—nutrients were provided
through a feeding tube in my nose—and during one of
the walks, started to feel warm drops down the backs of
my legs. I sheepishly wound my way back to my room,
hoping I wasn’t leaving a trail, and called for the nurse,
who was none too pleased. I remember that sponge bath
particularly well.
The next day came as a shock: I felt like crap. What?
How was this possible? I’d been walking! On the road
to recovery, some potholes suddenly
appeared, and I was in the dumps.
Maybe it was a result of staff
morale, or the fact that I’d just finished the best book that I’d read in
years, The Coffee Shop Chronicles
of New Orleans, by David Lummis,
and was suffering from post-goodbook depression. (You know that
final page is coming soon, and then
BAM! it’s over.) Ken had come by
and had already left, and I was suddenly realizing just how long the
road back to health might take to
travel. This recovery wasn’t going
to be a matter of days, but months,
and I felt drained. Then Dr. Oh
came in. “You’re doing well,” he
told me. “I’m going to release you
tomorrow!”
What? I still felt like such crap! Still,
I was happy to be heading home.
This is going to be the best year of
your life so far, I thought. As you
heal, you’ll really get to see what
you’re made of.
I already knew I was being challenged in a way I had never been
before. By necessity, I would now
begin walking a very different path. I
could choose to become more healthy than I’d ever been
before, and to learn to love like never before. I witnessed the light in the eyes of the friends and family
who were brave enough to take this journey with me,
and I felt blessed.
GOOD JEANS AND GREAT GENES want to look your best. I spent years rejecting jeans, but
just last year I bought a pair I love and rarely take them
off. They have a sleek, dark wash that you can dress up
or down. The denim market has exploded over the past
20 years. My favorite jeans do not have a fancy pedigree. They only cost $35, and are your basic Levi’s, the
American classic.
First, an update: I saw the doctor yesterday and found
out the surgeons removed all the cancer from my tongue!
Unfortunately, on a microscopic level, it has spread to
my lymph nodes on the right side of my neck. In a few
weeks, I will need to undergo radiation and, most likely,
chemotherapy. I am disappointed, of course, but know I
have the strength to get through this. I didn’t feel this
strong when I first heard my diagnosis in the doctor’s
office, but after not being able to sleep for hours, I
remembered the truth about myself: I am tough!
Good jeans don’t become a part of you—they are you. So
you try to choose well. Good genes (or, what you hope
are good genes) are handed down to you. You don’t get to
choose them. Some people are sleek, some are tall. Some
people are a bit big-busted, some get a big tush. Some
people’s genes have a lineage of cancer. My genes, much
like the denim I wear, seem to be of a simple lot. German
farmer stock, Irish and Cherokee Indian, all of which
make me the unique expression that I am.
My healing is happening at an amazing pace, which has
surprised even my doctor. My breathing tube was
removed today, as was my feeding tube. I even got to
take a shower, after some creative plastic wrapping was
done for the casts on my arm and leg.
I don’t know why, but today I am thankful for jeans.
There’s nothing like a good pair. The best jeans become
a part of you and define you. You drag them out whenever you’re down, or whenever you’re up, because you
Like most of the men in my family, and like my favorite
jeans, I have become better over time. My weight has
bounced around, all of my life, but seems to have found
a nice range. My face has mellowed and has actually
become handsome over the years. My brown hair now
has a touch of gray that gives me, if not a wiser look,
then a slightly more mature one, and God only knows, I
could use the maturity. Also, like my favorite jeans, I
am durable! Made to survive all the wear and tear the
universe can dish out.
ABILITY 25
MY PILLARS Today I wandered onto the Oral Cancer Foundations
website. A lot of great info is available there, until you
read the mortality rates: 27,000 people are diagnosed
with some sort of oral cancer each year, and only half of
those are alive at the end of five years (the most important milestone for cancer survivors). Those are pretty
heavy odds, you might be thinking. The numbers made
me mad. Screw you, I thought.
But then I wondered, is this a form of denial? Faith? Am
I crazy? It’s at times like these that I am truly grateful to
be the poster child for attention deficit disorder (ADD).
In a day or so, I won’t really remember the statistics and
will again be focused on my recovery. I prefer to focus
on the personal pillars of my health. These include:
Faith: Get those prayers going. Faith makes us healthy
even before any of us can see the physical proof and is
one of the strongest medicines in the universe. Faith is
our connection to God. It allows us to see the world
removed from its physical bonds. It tells us that we are
one with God. Yes, I know all of the arguments against
it: Faith is for the weak. Prayer doesn’t work. I pray to
win the lottery every week, and I’m still working at a 95 job, blah, blah, blah. I think of wishes as prayers, and
over the years, lots of mine have been answered—especially when I backed them with action.
Fantasy: Fantasy is my ability to envision a future. Fantasy works hand in hand with faith. It helps me imagine
better tomorrows: a world without cancer, a life filled
with happiness. Fantasizing helps me pass time I could
have spent worrying in a more pleasurable, uplifting
way. I can’t tell you how many times I’ve been interviewed by Oprah or Ellen on my way to work! Thank
God for hands-free phones, because people no longer
freak out when they see someone talking to himself in
the car anymore.
Attention Deficit Disorder: My ADD helps me quickly
dust my hands of any negative information I’ve been
given. It allows me to let faith and fantasy take their
rightful place, so I can put my energy into my healing.
Maybe my outlook is simplistic and I’m failing to take
statistics into account, but I say there’s no way I won’t
be here in five years. I have faith in the future, and
you’d better believe I’ll be around to live it out!
“IF IT’S NOT ONE THING, IT’S ANOTHER”
I love that line. It never fails to make me think of Gildna
Radner and one of my favorite Saturday Night Live
characters, Rosanne Rosanna Danna. Roseanne’s words
are appropriate for my cancer battle: when you’re in the
process of healing, it’s never just “one thing!”
At the start of this journey, the tumor on my tongue was
the cause of my pain. Then, my big concern was the fact I
had to take time off from work. Then, my focus was on
trying to figure out who I was when I wasn’t working,
26
ABILITY
since work was always a big part of my identity. Then, my
focus switched to my surgery and preparations for that. By
the time I was in pre-op, I’d forgotten all about the tumor,
because I was about to have my neck sliced open wide
enough for someone’s hands to reach into my mouth!
Post-surgery, I began waking up to morphine-induced
hallucinations. These took up a lot of time of their own.
The feeding tube was a beast, right from the start. It was
sewn into my nose, causing me nightmares of being
dragged along by a huge hook. Then, my concern
switched to my trachea tube, which always needed suction as my immune system worked to get it out of my
body. Then, there was the war of the nurses: the hovering nurses who would not let me sleep, and the nurses
who wouldn’t come even when I called them.
Once my trach and feeding tube were finally removed,
my focus turned to my cast. Today that’s the thing that’s
bugging me, along with residue from the trachea tube
removal. It turns out that doctors don’t bother to stitch
up the incision, they just let the skin grow back together
on its own, somewhere down the road. Until it does, I
guess I have a “blow hole.”
I have to admit that my “If it’s not one thing, it’s another”
philosophy started long before the cancer. Always restless, never satisfied, I was one of those people who
believed they appreciated beauty, while, in fact, I was
missing it all around me. How amazing the sun feels on
the back of my neck after I’ve being cooped up for so
long. How cute my dogs are, curled up on my legs while I
type. Before my diagnosis, I scarcely noticed the dappled
light of the huge tree in our front yard. I failed to recognize how amazing the body is.
From here on out, it’s up to me not only to seek out beauty in the moment, but to rejoice in that moment. And
though I love to bitch and complain at the end of a long
day, it recently hit me: how amazing would it be if I felt
peaceful at the end of a long day, instead?
“MAMA SAID THAT THERE’D BE DAYS
LIKE THIS...” One of the risks of undegoing my surgery was the possibility that a nerve controlling muscle movement in my
face may be severed. It could distort your smile, my
doctor warned.
So after my surgery, I checked to see how my lip was
moving, and decided that all was fine. However, in the
weeks that followed, I came to realize I had no feeling
from approximately the bottom of my ear to just before
the right side of my chin. My doctors say this could be:
a. permanent
b. temporary swelling that blocked the nerve, subsiding
over time
c. unlikely to heal for years, as the nerves work to
rewire themselves and restore feeling to my face
This morning, while brushing my teeth, I realized that
even though my lower lip has most of its mobility, I can
no longer form an “O” with my mouth. My lower lip
will go up but not down. Great. I’m going to have a lopsided smile. Ran, calm down, I told myself. Think about
the people who have it so much worse than you. Think
about the guy you always see when you go to the radiologist who had both legs amputated. I bet he would be
more than happy to trade places with you.
My shallow side has got me wondering: would other
people, faced with adversity, willingly change places
with someone else if it meant giving up what they had
learned? Would Steven Hawking trade places with a hot
guy who has a 75 IQ, just to get laid? And is it shallow
of me to want the smile I was born with?
WHEN THE FEAR CREEPS IN Those of us intent on surviving cancer often put a brave
face forward. For some, this is a “ fake it till you make
it” strategy. For others, they know that’ll be okay eventually. Survivors know that their hope and faith keep
them alive. Cancer treatment can be brutal, but you must
walk forward to your treatment room as if it’s nothing
important. Killing cells. Fusing tissue. It’s nothing. We
can handle it. We are survivors—until the fear creeps in.
There is virtually no human body made to withstand the
effects of radiation. Treatments such as acupuncture can
help alleviate the side effects, but my acupuncturist has
told me she’s never seen anyone go through radiation
without some ill effects.
I have another 18 days of treatments yet to undergo,
with another round of chemo scheduled to boost the
radiation. Fear has crept in. I know I will survive this—
but do I really want to?
My answer is yes. Pain is a small price to pay for love
and for life. In a year I will remember the treatments and
the blisters, but I will not remember the level of pain I
experience now. I will remember the people who stood by
me, each sending me energy to get through this. Friends
who force me to eat, even when the experience hurts so
much I want to throw the bowl of soup across the room.
Love is what I will remember and take from this experience. The pain will be a distant memory. Of course that
is then, and this is now. Right now I am in the worst pain
of this entire process. Yet I still have to eat, exercise and
meditate to keep my strength up, even though I don’t
feel like it. And I need to talk. The part of our minds that
tells us that we will be okay, that we will survive this is
the same part of our mind that allows us to rise above
the pain. In spite of my pain, I continue to be grateful. I
am surviving. In less than four weeks, the treatments
will come to an end.
OH, THE PAIN OF IT ALL! Just three more sessions to go. I’m so burnt I can barely
move my head. My tongue is so swollen that I can hardly
speak. Sores in my mouth prevent me from drinking water
without a great deal of prep. I haven’t taken a painkiller
during this entire experience and now I find myself wanting something strong! I feel pitiful and weak and it sucks.
Today, I understand why doctors don’t tell you everything the treatment process entails. Who in their right
mind would allow themselves to be tormented? If I
could do this all over again, there is no way I would
agree to radiation. I would rather follow a careful diet
and work for the best result possible. But ask me again,
in five years—when I am cancer free—if this was worth
it, and I may sing a different song.
LET THE LIGHT IN Two weeks ago, I finished my chemotherapy and radiation, and announced to the world that I was cancer free,
and ready to start healing. Afterwards, I slept for almost
three days. Ken woke me up for meals, and then let me
go back to sleep. I felt as if someone had siphoned my
tank in the middle of the night and left me with nothing.
I continue to heal more every day. I’ve watched every
day as the skin on my donor tongue sheds and reveals
new skin, and swelling reduced. By Friday of last week
I was starting to speak without pain, although there is
much speech therapy in my future.
When God closes a door he opens a window, but lately
I’ve kept my drapes drawn. I feel stuck. I want to make
changes to my life in order to live happily, but feel pressure to rejoin the world. I look forward to going back to
work, but will never seek my identity through my occupation again. A job is merely a means to make a living. I
want to start a more disciplined spiritual practice.
Recently, while sitting in my support group, I realized
that I’m not special because I got cancer. I’m just one of
millions who’ve had to face it. So here I am—grateful
that I don’t have to do this on my own. I have so many
amazing people around me to cheer me on. Some are
survivors and some are just amazing people who inspire
me every day. I am also grateful for Ken and for all of
my family, who have made this journey as easy as it
could possibly be. Now on to my first prescription for
healing myself: open the drapes, and let the light in!
Ran Michels
oralcancerfoundation.org
ABILITY 27
t also became clear several of the US sprinters had
been doing some hard work. This was most evident
in the cases of Tatyana McFadden and Jerome Singleton. McFadden dominated the running events,
winning four gold medals and a bronze, while Singleton came back to the United States as the fastest
amputee in his class after upending “Blade Runner”
Oscar Pistorius for the 100-meter (100m) title. Now
the focus shifts to London, site of the 2012 Paralympic Games. The fact that the games are more than a
year away has done nothing to slow the training of these
world-class athletes.
THE FASTEST MAN
Jerome Singleton doesn't have to wear long tights any
more, or pants to cover up his legs. Why should he? It
would only slow his time.
Singleton became the fastest amputee sprinter in the
world when he beat Oscar Pistorius in the 100m (T44)
at the IPC Athletics World Championships, back in January. Singleton and Pistorius have been rivals since
2008, when they began competing against each other
on the track. Pistorius had always gotten the better of
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ABILITY
Singleton, and with that success came Pistorius’s fame.
It was Pistorius who was dubbed “Blade Runner,” due
to his cheetah-running style, which is commonplace
among sprinters.
Pistorius also gained fame when he fought for the right
to compete in the 2008 Olympic Games, but failed to
qualify for South Africa's Olympic team. As Pistorius
faced these struggles, Singleton kept getting better, losing to Pistorius by just .03 seconds in the 100m at the
2008 Beijing Paralympics.
Finally, in January, Singleton edged out his archrival to
win the 100m and claim the gold. Singleton got out to
the better start, but Pistorius secured a comeback, drawing even with Singleton as the two speedsters came to
the line at identical times of 11.34. Singleton's lean forward was enough for victory as he went tumbling onto
the track's surface, sending Pistorius home defeated for
the first time since the 2004 Athens Paralympic Games.
“It finally solidified the rivalry,” Singleton said. “Oscar
and I have been calling it a rivalry since 2008, but I've
never won. So you can't call it a rivalry until you beat
the other person.”
Though claiming the title of “fastest man” is quite an
accomplishment, Singleton—who has only been competing internationally at this level since 2006—maintains a drive to keep winning.
accomplishments had been on a walking-prosthetic leg.
It wasn't until 2006 that Singleton discovered adaptive
sports. Almost instantly, he knew he wanted to be a part
of that experience.
Singleton, who has competed in sports all of his life,
was born without a fibula in his right leg and became an
amputee at 18 months old. Nevertheless, he followed his
older sister's footsteps on the track, running high hurdles
in middle school and high school. He also played basketball and football, and was one of South Carolina's
top 100 senior football prospects during his senior season. Most of his competition didn't know he was missing a leg.
Singleton began competing on the track, though his
priorities remained academic. He graduated from
Morehouse and attended graduate school at the University of Michigan, where he studied industrial engineering while training with the track and field team.
There he discovered that balancing athletic competition with schoolwork was difficult but manageable.
“I was a little self-conscious before I met everyone else
with physical disabilities,” Singleton said. “When I tried
out for the basketball team, I wore sweatpants. Whenever I went to a track meet, I wore long tights. People didn't know I had an artificial limb, the majority of the time.”
Singleton’s physical differences didn't seem to matter.
As a young man, he found success not only on the
track, but also on the football field. After making a
switch from runningback to strong safety, he went on to
play college football at Morehouse, thanks in part to a
full-academic scholarship. While there, he double
majored in mathematics and applied physics.
Singleton’s interest in the physics lab, as well as his personal accomplishments, led him to researching prosthetic running legs. Up until that point, all of his athletic
“With athletics, anything can happen,” Singleton said.
“I might wake up one day and not be able to compete
anymore, but my mind is still there. I'm not going to
defeat myself. I'm going to work. I've been given these
opportunities because of athletics, but the first time I
left the country was because of academics, with an
internship in Geneva, Switzerland.”
True to his interest in scholarship, Singleton completed
his graduate degree before training his focus solely on
the track. After graduation, Singleton competed in January's IPC Athletics World Championships, where he
stunned the sprinting world with his victory.
“It's a great feeling to know I'm the fastest amputee in
the world,” Singleton said. “But I also recognize that for
an amputee or any person with a disability to come out
and compete and push himself to go further is monumental, in itself. I'm thankful.”
ABILITY 29
Singleton is still pushing. He won silver at the IPC
event, in the 200m, and has his eyes on the world record
time in that event. He and three other US members won
bronze in the 4x100m relay. The January event was outside of the prime time for achieving the fastest time during outdoor season—so Singleton’s goal now is simply
to get faster. He has his eye on US sprinter Marlon
Shirley’s world record in the 100m for Paralympic
sprinting: 10.97.
McFadden said. “It's a different type of mental strategy.
It helps me keep up my endurance, as well.”
“When I come into London, I want to do so well that
there's a void between me and the next person and you
can't compare us,” Singleton said. “That's what I want in
track and field.”
McFadden then was placed in an orphanage that could
not afford the wheelchair needed to improve her mobility. Until the age of six, she transported herself by
“scooting,” or using her hands as her legs.
That's just like Singleton, striving for more.
At age six, McFadden was brought to the United States
and had to learn not only English, but also new ways to
manage the sudden accessibility of resources like physical therapy and a wheelchair. McFadden's “ya sama”
catchphrase—which means “I myself” in Russian—
became a mantra that drove her to independence and
success.
PRACTICE MAKES PERFECT
Tatyana McFadden describes the IPC Athletics World
Championships as “like another practice.” If that's the
case, her competition mode must be surreal.
McFadden came away from the World Championships
with four gold medals in the 200m, 400m, 800m and
1500m, and won a bronze in the 100m to go five for
five in her trip to Christchurch, New Zealand. Not bad
for a “practice.”
“World was a great, great championship for me,”
McFadden said. “It’s a huge event, but it helped me
relax more. It helped me figure out what I needed to do
for London.”
Reaching the goal of competing in London has demanded some unique training from McFadden. When she
entered college at the University of Illinois and began
competing on the university's adapted varsity athletics
track team, marathon competition was mandatory for all
track athletes. A marathon? For a sprinter?
“I thought, you've got to be kidding me,” McFadden
said. “I’m a sprinter and I can't do this. I don't know
how I'm going to prepare for this.”
She figured it out.
First up was the 2009 Chicago Marathon’s wheelchair
division. Here McFadden focused on building
endurance for her middle-distance events. She ended up
winning the marathon.
During the training season prior to this year's World
Championships, McFadden again competed in the
Chicago Marathon again and finished third. Then, a
month later, she won the New York City Marathon’s
wheelchair division. Now the notion of a sprinter running marathons seems a little less crazy.
“I thank my coach for steering me in that direction,”
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ABILITY
McFadden is known in the racing world for her upperbody strength, something which has taken both diligence and time to develop. Born in Russia with spina
bifida, McFadden needed a crucial surgery that was held
up for 21 days. It was a surgery she wasn’t expected to
survive.
“Something about sports just gave me that competitive
drive,” McFadden said. “I just want to be the best.
Looking into my past, things were very difficult. I know
that things I face now are probably not as difficult as
things I faced before. So I think competition only makes
me stronger.”
McFadden's strength continues to grow, as evidenced by
her progression in the lead up to London. At the 2004
Paralympic Games, when she was just 15 years old,
McFadden won the silver medal in the 100m (T54) and
bronze in the 200m. Four years later, in Beijing, she
won three silver medals (200m, 400m, 800m) and a
bronze (4x100m relay). Then came her marathon victories, followed by her five medals at the World Championships. With this string of successes, McFadden simultaneously scored a victory for the rights of people with
disabilities, and has successfully lobbied for Maryland
public schools to allow students with disabilities to participate in sports.
The medals McFadden wins—and the message she
sends—has her marching toward London 2012, carrying
the US flag. But she knows it won't be a smooth road.
When McFadden took to the blocks in the 100m at the
World Championships as a heavy underdog, she saw
some familiar faces mixed in with the new ones. This,
she understood, was a sign that practice won't stop
between now and next summer.
“I know I have to work even harder every day because
each day I train I'm going to get better, but each day
they train they're going to get better,” McFadden said.
“Now I'm working toward London. Everything I do—
World Championships, marathons and sprinting—it all
helps me prepare for London.”
by Josh Pate
paralympic.org
ABILITY 31
On Christmas Eve of 2007, I arrived in Los Angeles
with my husband and our baby son. We had come from
Sydney, Australia, with plans to spend six months in the
United States. On behalf of St. Lucy’s School in Sydney, I was to spend my maternity leave researching
schools and programs that served individuals with disabilities in the United States.
a studio adapted to meet the sensory preferences of students with autism spectrum disorder (ASD). Dr. Ron
Cohen, the president and chief executive officer of
UCPLA, invited me learn more about the organization’s
programs for children. After having worked with children in Australia for 10 years, I was excited to see the
work being done by others.
I could never have imagined how this undertaking
would change our lives. I could never have known that
it would lead me to my dream job: designing a program
that would reflect everything I believe to be true about
the best way to educate young children. Let me tell you
how this came to be.
I had begun my career as an actress, primarily working in children’s theatre. I’ve always felt that the
imagination and creativity of a child are wonderful
things to share. I enjoy enchanted worlds and find it
easy to inhabit them. Eventually I was drawn into theatre education and was amazed by the effect of theatre
on all children. I was intrigued, in particular, by the
responsiveness of children with disabilities. The purity and depth of their reactions were fascinating to me.
One of the first places I contacted after arriving in Los
Angeles was United Cerebral Palsy (UCP). Earlier in
the year, the UCP branch in New York City had
arranged for me to teach dance and theatre workshops
for adults with cerebral palsy. I loved the experience of
working with adults—the group of students was fantastic and everyone was open, responsive to music, and
willing to play within different theatre forms. I was hoping to work with adults again.
UCP of Los Angeles (UCPLA) offered a number of programs for adults and children, including ballet classes in
32
ABILITY
Eager to understand more about the influence of theatre
on children with disabilities, I began to work in special day classes in Australia as a drama teacher, studied for my master’s degree, and ended up an artist-inresidence at a private school for children with special
needs. Immersion in the creative arts played a central
role in this school’s curriculum and in the foundation
of its educational philosophy. I founded the school’s
children’s theatre group and even secured it a venue at
Artistic instructor Olivia Karaolis engages
young students at a UCPlay session.
the Ensemble Theatre, one of Sydney’s major theatre
companies.
But imagine my surprise when I discovered that in Los
Angeles, the home of Hollywood, many children with
ASD and other developmental disabilities have limited
(if any) access to an in-depth arts education. To their
credit, educators in the States seemed beautifully versed
in structured teaching strategies and in applied behavior
analysis. Individual Educational Plans (IEP) are clearly
used more effectively in this country than I had ever
observed in Australia. But where was the time to play,
to make things and to have fun?
UCP offered me an opportunity to address this problem
by allowing me to pilot a program that would give children in special day classes the same in-depth arts education as was received by their peers. My official involvement in this effort began in 2008, as I started to design
the program. My approach was based on the conviction
that true learning can only happen through experience.
That is, to truly experience something you need to be
exposed to it in a multitude of ways.
The creative arts offer endless learning experiences and
opportunities for individuals to make connections. The
curriculum I engineered met the California State Board
of Education content standards for theatre and, in addition, used the arts to target development of social,
behavioral and communication skills. In essence, it
drew on individual strengths and placed each person at
the center of his or her own learning. The curriculum
was given the name “UCPlay”.
UCPlay was piloted at Walgrove Elementary School in
Los Angeles. The selection of this school was done in
collaboration with the autism support unit at Los Angeles Unified School District. The district representatives
were supportive and enthusiastic and the teachers were
interested and excited. We were off to a good start.
After eight weeks using drama and puppetry to teach the
students about friendship, the class’s teacher began to
notice many students generalizing these skills on the
playground. The children spoke more and engaged more
in drama than in any other group activity. As the
UCPlay program’s first students, the children at Walgrove Elementary held a special place in our hearts. We
decided to celebrate their engagement in our program by
having them create the UCPlay logo.
It didn’t take long before word of UCPlay spread
ABILITY 33
Karaolis leads students in an
expressive group activity.
throughout the city. In no time at all we found ourselves in a
number of urban schools, including Wilton Place Elementary in Koreatown. At this school I met an extraordinary
young man with autism whose most powerful method of
communication is illustration. We helped him to use this
gift as a tool for learning across all subject areas.
Tom Whaley, Head of Theatre and Performing Arts for
the Santa Monica-Malibu Unified School District,
brought UCPlay to the students of his district and provided them with evidence that the creative arts can give
people a voice, an opportunity for collaborative learning, and a place to enjoy interaction with others. For
many special needs students, schooling is dictated by
following the student’s IEP, as guided by a therapist.
But UCPlay is unique in that it allows a new approach
to learning. As one student shared, “UCPlay is the first
drama program that takes my needs into consideration
without talking down to me. I am always a teenage boy,
not a baby, to them.”
Testimonials like this speak of the importance of the arts
in any student’s ability to learn. Time and again, kids
greet each session with excitement. The classroom
teacher feels encouraged by the sound of an entire
class’s laughter, as well as by the decision of students
who typically withdraw from social contact to engage.
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ABILITY
UCPlay means the world to me, largely because of the
students and wonderful people who have helped
UCPLA not only continue the program, but—even in
the middle of huge funding cuts—expand it! Several
teachers have made large personal donations to help fuel
our efforts. Parents, with the help of organizations like
The Santa Monica Education Foundation and the Malibu Special Education Foundation, have raised thousands of dollars to help UCP fund the UCPlay program
for their kids.
Even the clothing outlet Anthroplogie donated ornaments
to be used in puppetry (after carefully removing any
glass from every item). Students from the community
have selflessly volunteered their their time and their talents to support the program and, in the process, have
learned about the experiences of individuals who perceive the world differently than themselves.
Through UCPlay, we have come together to give students a place to be heard. We continue to play an active
role in student education and to help reveal, to themselves and to others, who these students can be. Being in
their presence in one of my greatest joys.
ucpla.org
by Olivia Karaolis
“
ction breeds knowledge,” said Paul
Mumba, an inclusive education consultant
specializing in the policy regimen of
Zambia. Last fall, his signature declaration served as the nucleus for Building
Capacity for Inclusion in Africa, a 15-day expedition
spearheaded by Mobility International USA (MIUSA).
According to Mumba, many parents and educators
throughout Zambia believe children with disabilities
have neither the ability nor the right to receive a public
education. This social stigma perpetuates barriers
throughout the region—barriers that are particularly
damaging to the nation’s youth.
While a number of activists are leading the charge for
grassroots social change in Zambia, no legislation is
being enacted to curb discrimination against this disenfranchised group, and most Zambians remain unfamiliar
with the severity of the problem.
To tear down barriers for Zambians with disabilities,
members of the National Youth Leadership Network
joined forces with the Children in Need Network
(CHIN), which served as our host organization in the
region. Our group included Lou Enge, MIUSA Project
Specialist for International Development and Disability,
Linda Shepard, CEO of Parents Educating Parents and
Professionals, and myself.
Composed of a range of non-governmental, communitybased, and faith-based organizatons, CHIN provides a
variety of services, from educational to nutritional program support, to child-abuse prevention services, to
skills training. As part of our collaboration, CHIN
sought technical assistance and information on how to
make its facilities, programs, and services more accessible to the public. Staff members requested education
and training to correct the misconception that a medical
background is necessary to respond to needs of people
with disabilities. They were also given models of programs and services that include and empower people
with disabilities.
Additionally, parents were provided the supports and
resources necessary to convene as an emerging social
body, and young people with and without disabilities
were brought together as an inclusive social force.
Finally, professionals and allies assembled to draft policy-change recommendations for CHIN, and for cadres
of the Zambian Ministry of Education.
The primary intention of our efforts was to support a
quest for social change on policy and organizational levels throughout Zambia. But as a biproduct of this
process, we found we were also directly impacting individual lives. The following are some highlights from
our itinerary:
DAY ONE: We explore the concept of inclusive
education in Zambia. To date, children with disabilities are virtually excluded from classrooms. Mumba,
our co-facilitator from Zambia, shares his belief that
all children are entitled to an equal education:”We call
our children disabled without taking the time to
understand what they need in order to learn,” he says.
“We are the ones who need to learn so we can really
serve the child. The children bear the brunt of the
feeling of failure when, in reality, the children don’t
fail—the teachers fail.”
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 materials, and some wheelchairs are made with recycled bike
tires. It is wonderful to watch children be fitted for such
supports for the first time. They visibly transform in a
matter of moments, each suddenly experiencing the feeling of full independence.
DAY THREE: We continue visiting schools in very
small sub-communities outside of Lusaka, Zambia’s
capital. We learn that, only months ago, the headmaster
of a school stoned a mother because she sought enrollment for her son with albinism. The headmaster said he
was offended the woman would even make such a
request. In the end, the mother, who by this point was
experiencing seizures and intense headaches, was
charged with a social offense, while the headmaster
received no charge against him. It was the woman’s
sixth attempt to find a school for her son.
DAY SIX: We bring parents—some of whom lead
non-profit organizations, and some of whom are interacting with each other for the first time—together with
other parents of children with disabilities. Topics
include the availability of public resources, as well as
efforts to break stereotypes. Mothers speak of how some
children with disabilities spend their lives living in the
corners of rooms, seldom if ever going out into the community, because of the risk to the child and the family.
DAY SEVEN: We visit a Zambian school at which a
community event is held. Organizational leaders and
political representatives unite to exchange information
and learn about new concepts of disability that are rooted
in personal pride, rather than in medical reference. While
formal communications are rewarding, hugs and handshakes at the end of the day exemplify real progress. A
passion for change is powerfully present among these
individuals. It is as though we have rewound the clocks
to the years preceding the disability rights movement in
the States. Change has not yet arrived, but the ideas and
the motivation are plentiful.
DAYS EIGHT AND NINE: A two-day policy
development venture breeds success. Representatives
of various venues draft CHIN’s first policy on inclusion. In a total of eight hours, approximately 30 people
devise a policy proposal to implement full inclusion
within the organization. The group plans to propose
this policy addition to other organizations and to representatives of Zambian ministries.
36
ABILITY
DAY THIRTEEN: Youth power! Teenagers with and
without disabilities come together to talk about a world
of inclusion for young people. Conversations focus on
radio shows and peer support at school, and anti-bullying
skits and songs about pride express the priorities of the
youth. These young leaders are evidently visionary
thinkers who speak of ways to break down social exclusion, not merely by theory, but by practice.
DAY SIXTEEN: A day centered on the importance of
community. In such a short period, we’ve come to establish alliances with individuals who experience struggles
similar to those of us on the other side of the world. The
feelings of partnership and connection are strong. It is an
amazing confirmation that individuals are at the heart of
social change and community building. Individuals who,
only 10 days ago, heard about disability pride for the
first time, are now practicing it. Those who understand
the concept of social struggle can collaborate to create
positive power.
DAY NINETEEN: Our final day of meetings is
accompanied by the stinging sense of separation at this
visit’s conclusion. My “home country” gives me so many
rights and so many opportunities that my new brothers
and sisters of Zambia also deserve. Why is it that I should
be so lucky while they still battle oppression? I pause for
a moment to capture the image of the local school in
which I stand, when a mother puts her hand on my shoulder. “Thank you,” she whispers. Our eyes meet and we
look at one another with a calm silence. “Thank you,” I
reply. We smile, and she walks away.
As Mumba taught us at the beginning of this experience,
“Action breeds knowledge.” The actions exhibited
throughout this journey are symbolic, preliminary steps
to many more that need to take place if a fully inclusive
international community is to be created.
THE TEAM
DR. SICHAMBA CHARLES, NATIONAL
BOARD SECRETARY, CHILDREN IN NEED
NETWORK (CHIN): “We have contributed to policy
making in this country with great strides. CHIN has a
position in our government to contribute to policy
change, and we have been challenged with policy development. But the efforts through this program will allow
for the creation of a policy that will surely be adopted
Betsy and Paul Mumba
Yvonne Zimba
Biswell Mwenya
Dr. Sichamba Charles
Linda and Lou
Pastor Stephen C. Bwalya
Astrida Mwila Kumda
with no objection. I envision that, one year from now,
this policy will be circulated within the Zambian Ministry of Education with particular attention given to children with disabilities. It will serve as a way for all people
to see the importance of such inclusive measures.”
PASTOR STEPHEN C. BWALYA, DIR., WONS
MINISTRIES INTERNATIONAL: “So many people
[with disabilities] are relying on individuals from many
social realms to come together on their behalf. This is
important because, while I appreciate the efforts of these
professionals, many of the people with disabilities in
our country have been left out. Now we are coming
together—people with disabilities and people without—
to equally represent our community. So many people
will benefit from these humbling efforts.”
REV. AARON J. CHILUNJIKA, DIR., CHISOMO
DROP-IN CENTER, FULL PROOF MISSION:
“There is growing knowledge in our community around
disability needs, and we have a growing understanding
of what services we need to best support all youth in our
community. We have lots of work before us, but I have a
vision that these efforts will move from paper to community reality. It will take commitment, unity and financial resources. All of these things are available. We just
need to use our experiences to bring them together.”
PAUL MUMBA, SCHOOL IN-SERVICE COORDINATOR, INDEPENDENT INTERNATIONAL
EDUCATION CONSULTANT: “Working with these
individuals has added value to the whole concept of
inclusive education in [Zambia]. Whether the results
will be seen in rural schools or national government, it
is invigorating to see how truly inclusive community
services could work. Looking forward, I see this to be
an example of real progress.
ROSEMARY M. MWEWA, EXECUTIVE
DIRECTOR, CEREBRAL PALSY ASSOCIATION OF ZAMBIA: “One of our biggest challenges is
the incapacitation of people with disabilities brought
about by the general society, not by people with disabilities themselves. We need additional resources for community involvement, family support, respite care, and
transportation. People must accept that disability comes
into anyone’s life at any time. Disability associates itself
with any family of any economic status.”
Reverend Aaron J. Chilunjika
Rosemary M. Mwewa
ASTRIDA MWILA KUMDA, PROJECT COORDINATOR, ZAMBIA ASSOCIATION OF PARENTS
FOR CHILDREN WITH DISABILITIES: “As a mother of a child with disabilities, my aim is to change the way
community thinks about disability. My child has the same
rights of any other child; my 11-year-old son deserves the
same respect. Children may not always be able to speak for
themselves, in the traditional sense, but that is when it
becomes our responsibility to speak on their behalf, and I am
doing that for my child and for other children of Zambia.”
BISWELL MWENYA, STAFF OFFICER, ZAMBIA MINISTRY OF HEALTH: “Too often people
with disabilities are forbidden from participating in
society. We may say that policies are essential, but they
are no good without actions. We must work together to
achieve this greater end. For anything to be implemented, there must be hard work, and we are ready to do that
for ourselves and for those less represented.”
MUTEMA RICHARD, HEAD MASTER, JATISHA
SCHOOL FOR ORPHANS AND VULNERABLE
CHILDREN: “It is time for us to begin changing the
way people have been thinking for centuries. Children
with disabilities are valuable to our schools. They need
education, but they provide education as well. If we are
seeking ways for our communities to be more self-sufficient, we must allow all people the ability to contribute
to this cause, including those with disabilities.”
YVONNE ZIMBA, YOUTH EMPOWERMENT
SPECIALIST, CHILDREN IN NEED NETWORK
(CHIN): “We are working to create a new environment
within CHIN as well as within Zambia. People with disabilities were cast aside for many years. We are now
banding together to create a new, and strong, and powerful community. Our allies—countries like the United
States—have done the same thing before us. That is why
we turn to such allies for direction and support. We have
faith that we will be able to create an equal society in
our country, as well.”
by Betsy Valnes
Executive Director of the
National Youth Leadership Network
Mobility International USA
miusa.org
Children In Need Network of Zambia
chin.org.zm
ABILITY 37
TUSCAN WHITE BEAN SALAD ON CROSTINI
This elegant appetizer or flavorful side dish features
healthy beans. Begin tossing ingredients together about
45 minutes before serving, so the salad can chill in the
refrigerator for 30 minutes. Aside from its star, the
white bean, the tomatoes, onions, and parsley in this
recipe are also rich in cancer-fighting nutrients, while
the calorie count is on the skinny side.
Ingredients:
SALAD DRESSING:
• 2 teaspoons olive oil, divided
• 1 garlic clove, minced
• 1 teaspoon dried oregano
• 1/4 cup cider vinegar
BEAN SALAD:
• 2 16-ounce cans cannelloni beans or other white
beans, rinsed and drained
• 1-1/2 cups diced plum tomato
• 1/2 cup chopped Vidalia or other sweet onion
• 1/2 cup (2 ounces) crumbled blue cheese
• 1/3 cup chopped fresh parsley
• 1/2 teaspoon salt
• 1/2 teaspoon ground pepper
Two loaves deli-style bread for the crostini. (French,
Italian, or whole-wheat, for example.)
Directions:
To prepare dressing: In a nonstick skillet, heat 1 teaspoon of olive oil over medium-high heat. Add the garlic and oregano; sauté for 30 seconds. Remove from
heat and stir in vinegar.
To prepare the salad: In a large bowl, combine remaining teaspoon of olive oil and the next seven ingredients:
beans through pepper. Add the dressing to the bean
salad; toss lightly. Cover and chill for 30 minutes
before serving.
To prepare crostini: Slice bread thinly. Toast under a
broiler or in the toaster. Top with bean salad. Serves 8.
38
ABILITY
Approximate per serving: 289 calories, 6 grams of fat.
Note: Cannelloni beans are large, white Italian kidney
beans. Great Northern beans, which look like white lima
beans, can be used as a substitute.
CRISPY SHRIMP SENSATIONS
If you love shrimp, here’s a crunchy new way to eat them.
Ingredients:
• 1 pound medium shrimp, peeled and de-veined
(about 24 shrimp)
• 1/4 cup cornstarch
• 1 tablespoon water
• 2 large egg whites
• 1- 1/2 cups finely crushed, reduced-fat buttery
crackers (about 35 crackers), such as Ritz
• 1 teaspoon paprika
• 1/4 teaspoon salt
• 1/4 teaspoon pepper
• cooking spray
• 1 12-ounce bottle cocktail sauce
• lemon wedges
Directions:
Preheat broiler. Place shrimp and cornstarch in resealable plastic bag. Close bag and shake to coat. In a small
bowl, combine water and egg whites; beat until foamy.
In second small bowl, combine cracker crumbs, paprika,
salt, and pepper. Dip shrimp in egg white mixture, then
coat with crumb mixture.
Place on a baking sheet coated with cooking spray.
Spray shrimp with a light coat of cooking spray. Broil 5
minutes or until the shrimp are done, turning once.
Serve with cocktail sauce and lemon wedges. Serves 8.
Approximate per serving: 310 calories; 4.5 grams of fat.
MINTED MELON BALLS
Lime juice, mint, and a spoonful of sugar add an
upscale twist to this simple fruit salad recipe, and one
cup provides one of the five servings of fruits and
vegetables needed each day to help ward off cancer.
Most people consider melons to be a fruit, but they are
really vegetables related to the cucumber and the gourd.
Ingredients:
• 2 cups watermelon, seedless or seeds removed
• 2 cups cantaloupe
• 2 cups honeydew melon
• 1/4 cup water
• 2 tablespoons sugar
• 2 teaspoons lime juice
• 3 tablespoons fresh mint, chopped finely
Directions:
Scoop out watermelon, cantaloupe and honeydew melon
meat with a melon baller. In a small saucepan over medium heat, bring water, sugar, and lime juice to a boil. Boil
2 minutes and remove from heat.
Cool completely. Toss sugar mixture together with
melon and mint. Chill well. Serves 8. Approximate per
serving: 60 calories; 0 grams of fat
WARM CHICKEN SALAD & WALNUT SHERRY
VINAIGRETTE
Ingredients:
• 4 chicken breasts, skinless, poached
• 3 tablespoons canola oil
• 4 ounces walnuts
• 2 scallions, sliced
• 1 clove garlic, minced
• 1/2 cup sherry
• 1/4 cup white wine vinegar
• salt and pepper
• salad greens
• chives, chopped, for garnish
Directions:
To poach chicken breasts, bring a pot of salted water,
enough to cover the chicken, to a boil. Add the chicken.
Return to a boil, then reduce the heat to a simmer and
cook 10 minutes, or until the meat is white in the center.
Remove chicken from the water. Salt and pepper the
meat and keep warm.
In a sauté pan, heat 1 tablespoon of the oil and add the
walnuts. Saute for 1-2 minutes, giving the nuts a touch
of toasting. Remove from pan. Add scallions and garlic.
Saute 1 minute. Add sherry and simmer until reduced.
Meanwhile, slice the chicken crosswise in strips. Add the
vinegar and 2 remaining tablespoons of canola oil to the
sauté pan. Heat through. Add the chicken and walnuts to
the pan. Toss with the vinaigrette.
Serve the chicken over a bed of salad greens. Use all the
vinaigrette in the pan to drizzle over the chicken. Sprinkle
with chives to garnish. Serves 8. Approximate per serving: 306 calories; 14.9 grams total fat; 46.1% calories
from fat.
cancer.org
ABILITY 39
40
ABILITY
Photos by Nancy Villere - CrushPhotoStudios.com
Chet Cooper: You’re a pretty busy guy these days. How did you first make your way onto the
stand-up scene?
Howie Mandel: In the mid-1970s, there was this huge boom of stand-up comedy throughout
North America. I went to see a show at a club called Yuk-Yuks, in Toronto, and I was just fascinated. I ended up coming back for amateur hour on a Monday at midnight, and got up there without any thought as to what might come of it.
It was a cool feeling to garner that laughter, you know? I’d found a new passion in life, and a lot
of people of like mind: outcasts who were getting up there and trying to make people laugh.
Cooper: What could be better?
Mandel: A few months later, I was in California on vacation and came across the Comedy Store
on Sunset Boulevard. I decided I’d do something there. If I made a fool of myself it was okay
ABILITY 41
Photos by Nancy Villere - CrushPhotoStudios.com
HOWIE AT HOME: After battling social isolation as
a teenager, Mandel found success as a stand-up
comedian, as host of NBC’s Deal or No Deal, and
as a guest judge on America’s Got Talent.
because I was 3,000 miles from home. In that audience,
there was a producer from Make Me Laugh, an old comedy game show. He hired me, which gave me a great
story to tell about my vacation.
year, and I don’t want every one of them to be the same.
If I get in trouble on stage, or if I go blank, it makes for
great moments of entertainment. That approach has
worked for me in the past, and I hope it continues.
So I went back to my regular job, at a carpet place, and
after that Make Me Laugh episode aired, I started getting calls from Merv Griffin and Mike Douglas to
come out and do shows. Diana Ross saw me on Merv
Griffin and hired me to be her opening act. I thought,
“I love doing this. Why not do it full-time?” So I took
the plunge.
Cooper: I talked to Jay Leno, years ago, about ad-libbing, and he said, “Nobody ad-libs.” And I said, “What
about Robin Williams?” And he said that Williams is the
best at having a big bag of tricks he can pull from, material that he’s thought of and rehearsed on his own time.
Cooper: You left a good job in carpeting?
Mandel: Yes, and then one thing led to another, and now
I’m in ABILITY Magazine! (laughs) I was always scared
to death on stage, though. I didn’t really understand
what I was doing, or why the audience was responding,
so I would say,”What? What?” and somehow that
became a catchphrase.
42
Mandel: Well, I’m not saying nothing is repeated.
There is a bag of tricks that, after 30 years, you know
you can pull from. I have tried and proven pieces that I
know will always elicit a laugh. People are paying
money to see me, and they want to hear me do these
cartoon voices, and some of the pieces I’m known for.
But my favorite moments are those that have never
happened before. Like this interview. It was not prewritten, by the way.
Cooper: That line wasn’t rehearsed?
Cooper: Oh, it was rehearsed. I can tell this was all
rehearsed.
Mandel: No. I don’t rehearse. I’m more comfortable in
my discomfort.
Mandel: No! In fact, as you read this, you’ll see this is
the first time I’ve ever said this stuff.
Cooper: You just go up there with some ideas, and then
ad-lib the rest?
Cooper: Would you like to speak directly to the ABILITY
reader?
Mandel: I hope to. Fear is my fuel. A lot of what I do is
ad-libbed and improvisational. I do 200 live dates a
Mandel: I don’t know. Can we break that fourth wall in
print?
ABILITY
Cooper: Click here.
Mandel: This is online too?
Cooper: It’s both in print and online, but I’ve often
thought about incorporating a hotlink on our printed page
that takes the reader into a web-based hologram.
Mandel: I don’t believe anybody’s actually reading this
magazine online. If they’re online, they’re looking at
porn. [laughter]
One night, when they were watching Candid Camera, I
finally understood what comedy was all about. I heard
the laughter on television, I turned around and saw my
parents laughing, and that’s when I thought: “This is
great. This is what I can do. I’m gonna prank somebody.”
Cooper: What grade were you in when you made that
discovery?
Mandel: Second. [laughter] No. Twelfth.
Cooper: You were a senior?
ABILITY is what they click to when their wife comes
into the room:“What are you doing?” “Reading that article from ABILITY, honey.”
Mandel: No. In Canada we had 13th grade.
Cooper: We call that college.
Cooper: When you’re on stage, do you interact with
your audiences? I haven’t seen your live show.
Mandel: It’s phenomenal. I’m a huge fan of mine. I go
to just about every show I do.
Cooper: (laughs) That’s dedication! Did you joke a lot
when you were in school?
Mandel: Yes, but nobody thought I was that funny. I was
kind of a misfit, actually. When you’re young, you want
to be like everybody else, and I was like nobody else. I
couldn’t sit still. I was impulsive. I still am. What is
now called a “talent” did not serve me well as a child. I
didn’t have friends. I was really an outcast.
Cooper: Why?
Mandel: For one thing, this was in the mid-1950s. At
that time, Attention Deficit Hyperactivity Disorder
(ADHD) was not an issue in school. Or at least, nobody
talked about it or labeled it. Today ADHD is very prevalent, but I would imagine there were just as many kids
who had it back then as have it now.
Mandel: I didn’t finish high school! Can I still be in
ABILITY?
Cooper: We’ll have to think about it. So, were you
ever officially diagnosed with ADHD?
Mandel: I’ve been diagnosed with ADHD and OCD.
Cooper: Watching you on television, I always wondered,
who is the person who’s behind all of the nervous hand
movement?
Mandel: It was me. Just not as medicated as I am now.
Cooper: When did you first start to feel you may have some
kind of condition?
Mandel: I don’t remember a time when I didn’t feel there
was an issue. But I wasn’t diagnosed until adulthood. I’ve
always felt a little bit different, and I always knew I wasn’t as comfortable with life as everybody else seemed to
be. But I didn’t know what I could do about it.
When I was a kid, I was considered troubled. I wasn’t
just the class clown who lobbed a funny quip from the
back of the class. I was outrageous.
When I was a kid, I didn’t know anybody who went to a
psychiatrist. There was always a stigma attached to
mental health issues. I think there still is. But now I’m
taking care of myself.
Cooper: How so?
Cooper: When did you make the decision to get help?
Mandel: I once called construction companies to bid on
an addition to the school library, so that there would
suddenly be people outside, measuring the building.
Mandel: Not until I was in my forties. There wasn’t
some lightbulb that went off in my head. It was just
becoming harder and harder for me to function.
“Who authorized this?” the principal would ask. The
answer: “Howie Mandel.”
One issue that I talk about freely is my germophobia.
I’m in public life, obviously, and yet I’m somebody who
really is not comfortable out in the world. So that
became an issue for me. I found it becoming harder and
harder for me to get along, and I was spending longer
and longer in the shower. I wanted to spend a moment
outside. I needed help. So I got help. And once someone
put a name to this thing, it all became easier.
Cooper: (laughs) Teachers must’ve loved you.
Mandel: I thought that was funny, but nobody else
did. I was mostly entertaining myself, though. My
parents both had a great sense of humor, and always
laughed a lot.
ABILITY 43
Photos by Nancy Villere - CrushPhotoStudios.com
Cooper: You’re taking medications now?
Mandel: Yeah. And I’m getting therapy. I’ve done everything. I’ve been doing this process for years and years
and years. I’ll do whatever it takes to function and cope.
Cooper: That seems reasonable.
Mandel: Everybody in life needs coping skills. We all
have stress in our lives. We all have neuroses, relationship problems, whatever. Yet very few people seek help.
We take care of our dental health, but we don’t take care
of our mental health.
Cooper: That rhymes.
Mandel: That’s why I say it. I used to say, “people
should take care of their ankle health, and not their mental health”, but that never caught on.
Cooper: (laughs) Do you have children?
Mandel: Three. My daughter is 26, and is a teacher in East
Los Angeles. My son is an actor on Scare Tactics, which
is a show on SyFy, and just finished a movie. And my
youngest is 18. She’s studying sociology in college.
Cooper: And your wife?
Mandel: She’s not in school anymore. (laughs) We just
celebrated our 31st anniversary. She used to be in retail,
but she sold that business and now does real estate.
Cooper: A lot of people in your life today have been
there from the beginning.
Mandel: Everybody I work with has been with me for a
long time. I’ve known my manager since I was 14, and
my wife’s known him since they were in preschool. My
manager and I are best friends. I like stability around
me. There’s no stability in this business, so I like my
world to be as stable as possible.
Cooper: When you were first getting to know your wife,
how did you tell her about your germophobia, so that
she could understand it?
Mandel: I don’t know that she understands it, even
today, but she always knew about it. I would leave often
to go home and shower.
NEVER LET THEM SEE YOU SWEAT: As a teen growing up in
Canada, Mandel competed on the wrestling team, and secretly
took lots of showers to cleanse himself of his germy opponents.
44
ABILITY
I think she thought I was odd, but very clean. I took four
or five showers a day. I didn’t want to touch things. I
masked my germophobia for many, many, many years. I
hid a lot of it. She was not in the bathroom with me
while I was scalding my hands, so I didn’t really let her
in on that, but she knew that I was obsessed with washing my hands.
Cooper: She didn’t suspect anything?
Mandel: I could sometimes cover my condition with
logic: “Let’s make a path in this hotel room with towels,
because you don’t know what was dripped all over this
carpet.” So she would walk along my path. “Let’s take
the comforter off the bed with the salad tongs, because
we don’t know what’s on it.”
I think the blacklight bothered her, though. I’d turn off
the light, she’d think I was being romantic, and then I’d
click on the blacklight to look for stains. That really
ruins the romance.
Cooper: Sure. I think that would freak anybody out.
Mandel: She liked the kookiness in me. I’ve been living CSI: Crime Scene Investigation my entire life.
When I was a kid, my parents bought me Green Ghost.
Remember that game?
I have been persistent in this business. I would imagine
she saw the charm in my persistence. Maybe. I don’t
know what it was.
Cooper: I know you do some advocacy work in the
field of mental wellness. Have you been doing any of
that recently?
Mandel: Yes. I spoke on Capitol Hill for National Children’s Mental Health Day. I’m mostly trying to help
remove the stigma that surrounds mental conditions and
mental health professionals, because I don’t think
there’s anybody alive who couldn’t benefit from a mental health professional being a part of his or her life.
Take a look at all the bullying and the shootings that
happen in schools. Often the perpetrators have been
identified as “problem children” long before any incidents happen, yet there’s nothing in the curriculum to
deal with those kinds of problems. Our kids are spending eight hours a day in school, and a lot of their issues
are easily identifiable, even to the untrained eye. Imagine how these kids might benefit from just having
access to someone who’s trained to identify a situation
and fix it.
Cooper: Were you bullied as a kid?
Cooper: I’m not sure.
Mandel: It was a blacklight game. Anyway, I had that
game, and I looked at my blacklight poster on the wall
and I thought, “What is all this other crap that’s being
illuminated?” [laughter]
It freaked me out. I went into a room to play a game, I
turned on the blacklight, and I screamed, “Am I going
to die? What are all these blotches!”
A lot of kids were afraid of ghosts and goblins. I was
afraid of stains.
Mandel: No. People would just stay away from me. I
was not invited to be a part of anything. Plus, I was
always the smallest kid in school. I wanted to meet people, but everything I’ve ever joined was the worst possible scenario for whatever my issues were. The only
team I could get on in high school was wrestling. I was
90 pounds, and I looked like a girl.
Cooper: I’m not going to laugh.
Mandel: And I wanted to meet girls.
Cooper: By wrestling them?
Cooper: What would have happened if you didn’t have
that blacklight?
Mandel: I would have sat on some s--t I didn’t want to.
Cooper: Maybe it’s better not to know what germs we’re
touching. Maybe ignorance is bliss.
Mandel: I wish I were ignorant. I didn’t get my General
Educational Diploma (GED), but that doesn’t seem to
have helped me.
Cooper: Your wife must have found your qualities
endearing. That’s what matters...
Mandel: You know, she wasn’t all that attracted to me.
It took me the longest time to get her. There was nothing attractive about me, and I had a reputation for being
outrageous. But I was persistent in pursuing her, just as
Mandel: (laughs) No. I didn’t wrestle girls. I didn’t
want to touch anybody, and yet there I was, rolling on
the floor, sweating with strangers, looking like a girl.
Cooper: Why’d you join the team?
Mandel: I thought I was going to meet people. I thought
I was going to be part of a team, and that girls were
going to like me because I wore a uniform. I didn’t realize the uniform was a ‘onesy.’
A lot of people thought I was a girl at that time, because
I had long hair. So I figured out that the only way I
could talk to girls was to go into the girls’ restroom,
brush my hair in the mirror, and talk to the ones who
came in.
Cooper: You really did that?
ABILITY 47
Photos by Nancy Villere - CrushPhotoStudios.com
Mandel: Yeah. That’s where my wife met me, actually:
in the girls’ restroom. I could hear girls talking in there,
so I went in, stood at the mirror, brushing my hair, and
girls would come in, and we’d talk. They didn’t know I
was a boy.
Cooper: I can’t tell if you’re joking or not.
Mandel: I’m not. I weighed 89 pounds, I didn’t shave,
and my voice was high. Plus, I had long, beautiful,
flowing hair.
I remember I had a job once, selling egg-salad sandwiches at bingo. My mom drove me to work and, while
we were in the car, guys would honk and whistle, trying
to pick me up. That was my world in the ‘80s.
Cooper: You’ve come a long way.
Mandel: I was defintiely a late bloomer. I even tried to
talk with my voice lower for a while. My mom kept
hearing “How old is your daughter?” wherever we went.
Cooper: How did your book come about? I like the title:
Here’s the Deal: Don’t Touch Me.
Mandel: I wrote the book to collect a lot of really funny
stories about my experiences in this business. It was put
48
ABILITY
together in partnership with a guy who could help me
organize my thoughts, because organization is not my
strong point. We’d hang out for hours and hours, every
day, for a couple of months. He’d ask questions and I’d
answer them. When we finally printed out the transcripts of everything I’d said on tape, it was something
like 900 pages.
Cooper: Wow.
Mandel: My original intent had been to write something
less personal. I didn’t want to talk about my issues—not
because I was hiding them, but because I didn’t think
that’s what the book should be about. So I was a little
taken aback by how much of the book really turned out
to be about the trials and tribulations of being me. And I
was embarrassed and afraid when it got published. But
as it turned out, that book has prompted a lot of people
to come up and say, “Me, too.” And that experience has
helped me become more comfortable with my mental
health issues. Enough people related to my experiences
that revealing those experiences didn’t turn out to be as
embarrassing as I’d thought it would.
Cooper: You’ve got nothing to be embarrassed about.
You’ve built quite a successful life.
Mandel: It’s a constant journey.
[MANDEL’S WIFE, TERRY, ENTERS THE ROOM.]
Mandel: (to Terry) Did you think I was nuts?
Mandel: There she is. (to Terry) The first time we met,
was I in the girls’ bathroom brushing my hair?
Terry Mandel: You know what? Because I didn’t live
with you, I really didn’t know how much you used to
shower. But I know you used to go home a lot. “Where
are you going?” “I’ve got to go home and shower.”
Terry Mandel: [laughter] Yes. I knew you were a guy,
even if nobody else did. You had a reputation.
Mandel: What was my reputation?
Cooper: (to Terry) If you were going give some advice
to someone who’s dating someone with OCD—
Terry Mandel: Crazy and wild.
Mandel: “Run!” [laughter]
Mandel: Not good, right?
Cooper: —would you think that maybe for a period of
time it’s actually a good thing to hide some of those differences and just let the love occur? Or should it all be
out there in front?
Terry Mandel: No.
Cooper: You liked him because he was crazy and wild?
Terry Mandel: Not at first. At first, I said, “No way.” He
had this horrible reputation.
As a matter of fact, we once got in a car accident while
he was driving. It was so bad we flew over to the parking lot and spun out.
I turned to him afterwards, as everybody was screaming,
and I said,”Very funny!” Because I thought he had done
it as a joke.
Cooper: And it was not a joke?
Terry Mandel: I don’t think Howie knew that he had
OCD, especially back then. I think he just did these rituals and had these thoughts, and he didn’t share them
until later.
But I didn’t think it was weird. There were certain
things I thought were weird about Howie, but I didn’t
live with him then, so I didn’t really know all of his
stuff. Nobody really thought about those things then.
Now people are much more aware of these things.
Everything’s out in the open. People are talking about
their differences. It’s good. It helps Howie to talk.
Mandel: And I seem to be much better.
Terry Mandel: No. He just looked at me like I was nuts.
And then we fell in love.
Cooper: Did you see a transition?
Cooper: Howie told me that, when you first talked to
him, he was very upset with you because your hair was
better than his hair.
Terry Mandel: I’ve seen ups and downs, depending on
Howie’s stress levels. He’ll be better sometimes,
sometimes worse. He fought against taking medication
for a long time, and then he started taking it.
Terry Mandel: (laughs) His hair was a mess. He had
really long hair.
Mandel: Hair today, gone tomorrow.
Cooper: If you knew Howie had this bad reputation,
why did you talk to him?
Terry Mandel: He was cute.
Mandel: And little.
Terry Mandel: He was adorable. He was shorter than me.
Mandel: All right. [laughter]
Cooper: I think there’s a tendency to fight taking medications, because they think their creativity might diminish if you’re taking them...
Terry Mandel: He thought it would change his whole
personality. It really didn’t. It just helped his thoughts, I
guess. Even with medication he has the same thoughts,
but now they don’t give him anxiety attacks or affect
how he functions.
Mandel: I also spend less time in the hospital.
Terry Mandel: (to Howie) You weren’t there that much.
I think you’re better now, don’t you?
Cooper: Terry, when you first started dating Howie—
when you noticed he washed his hands a lot, showered a
lot—what were you thinking, other than that he was cute?
Mandel: Yeah. I’m fine.
Terry Mandel: He was the cleanest guy I had ever seen.
Cooper: It’s about coping skills.
Terry Mandel: Your head’s better. Therapy has helped.
ABILITY 49
Terry Mandel: He’s a good coper. He’s better than I am
at coping. I can fall apart over any little thing, but
Howie will just help himself and get through it. He’s
even better today than he ever was.
Cooper: Through a flash mob?
Mandel: Right. What if we took the recipient of the message to a public area and had a thousand people relay
this message in a giant musical?
Mandel: I’ve gotten a lot of help.
Cooper: (laughs) I like it.
Cooper: Do either of you have any words of wisdom for
relationships that might have these kinds of challenges?
Mandel: I’m on the road a lot. That works for us.
Terry Mandel: [laughter] Communication is so important. A lot of people give up so easily. You just have
to care enough, believe enough.
Mandel: She’s pretty smart, my wife. Those are great
words of wisdom from Mrs. Mandel.
Mandel: So we’re doing it. The first show aired a couple
of months back, right after American Idol, on Fox. We
have a production company. We’re shooting a lot of
stuff right now.
Cooper: Good luck with it.
Mandel: So now that I’ve told you my life story, can I
still be in ABILITY?
Cooper: I’ll let you know.
Terry Mandel: (to Howie) I’ll let you go back to talking
about your abilities. Can you talk about Mobbed?
Mandel: Yes. Mobbed is a flash-mob television show.(to
Chet) Do you know the phenomenon of flash mob?
Cooper: We just had one outside your house.
Mandel: If you’re alone, it’s just flashing. There’s got to
be a bunch of you for it to be a mob.
Cooper: 4 folks, 2 squirrels and a dog.
Mandel: It’s become this viral phenomenon that I
thought would be great to capture for television. In some
sense, television has tried to do this before, but it has
never really worked. There’s never been a hook, you
know? A story to tell.
Cooper: Do tell.
Mandel: I thought, what if somebody has a message they
want to relay to someone else? A very private, intimate
message. Like, maybe they want to tell their boss to take
this job and shove it, or they want to come out of the
closet to their family, or they want to ask somebody to
marry them.
howiemandel.com
OBSESSIVE-COMPULSIVE DISORDER is an anxiety
disorder characterized by recurrent unwanted thoughts
(obsessions) and/or repetivitive behaviors (compulsions) such as handwashing, counting, checking or
cleaning. These so-called “rituals” are often performed
with the hope of preventing obsessive thoughts or
making them go away. Though rituals provide only
temporary relief, not performing them markedly
increases anxiety.
People with OCD may be plagued by persistent,
unwelcome thoughts or images, or by an urgent need
to engage in certain rituals. They may be obsessed
with germs or dirt, and wash their hands over and
over. They may be filled with doubt and feel the need
to check things repeatedly. Effective treatments for
obsessive-compulsive disorder are available. New,
improved therapies can help most people with OCD
and other anxiety disorders lead productive, fulfilling
lives. For more information, locate mental health services in your area, affordable healthcare, NIMH clinical
trials, and listings of professionals and organizations.
National Institute of Mental Health
nimh.gov
50
ABILITY
Photos by Nancy Villere - CrushPhotoStudios.com
L to R: Chet Cooper and Mandel listen to wife Terry Mandel (off camera) talk
about the pranks she endured while she and Howie were first dating.
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 enthusiasm to entertain the class. Under Mrs. Parsons’ tutelage,
I began to read one-syllable words. See Spot run. Go,
Dick, go. Look, Jane, look!
One day, Mrs. Parsons pulled me aside as I was coming
in from recess and asked,“Nelson, where does your
mother take you for speaking and voice lessons?” I told
her I didn’t understand the question. “Oh,” she said, realizing that whatever it was she saw in me somehow came
naturally.
With the guidance and encouragement of Mrs. Parsons,
I made up my mind about a future career. Every person
in Juniata County listened to WJUN 1220 AM’s Ralph
Parker, the station’s owner, who had a wonderful voice.
Mrs. Parsons would compare my voice to his and say,
“Oh, Nelson, with that voice of yours, I can just hear
you on WJUN when you grow up.” I took note of that.
When I entered Mrs. Williams’s second grade class, I
was eager to recapture the same sort of success I had
enjoyed in first grade. Mrs. Williams was a nice lady,
and all the older kids I knew said she was friendly. Soon
after the year began, however, something went wrong.
All the other kids seemed to be doing fine, but I was
struggling. The words in my readings had multiple syllables and were harder to read. Trying to put them together
into a sentence was difficult. And more difficult than
second-grade reading was second-grade writing. I just
need to practice more, I thought, so I took my books and
papers home each night, hiding in my room as I tried to
make sense of them all.
rowing up, I thought I was the only kid like
me in the world. Many years later, I came to
understand that my story is the story of millions of Americans who struggle with literacy. We all have some obstacle with which
we’ve had to wrestle. What I finally figured out was that I
was the only person in my life who could do anything
about what was holding me back. That realization was a
quantum leap.
In the early 1960s, McAlisterville, PA, population 800,
was a bustling Rockwellian village an hour northwest
of Harrisburg, the state capital. I was in first grade, and
I don’t think any kid in the history of the world ever
loved school more than I did. My teacher, Mrs. Parsons, was a petite lady in her early forties with a pleasant smile and a passionate dedication to each student’s
52
ABILITY
One day in class, to my horror, Mrs. Williams called on
me to read out loud. I stammered and stuttered and mispronounced almost every word. The other kids read
well, but I couldn’t get through a sentence. A few kids
snickered, and soon most of the class was laughing. Mrs.
Williams quieted the class and called on someone else to
read out loud. I was so humiliated, I wanted to cry. But
crying was not an option.
As the school year marched on, I watched my classmates
grow while I shrank. There was so much confusing information that I was overwhelmed. I couldn’t take it all in.
But I tried and struggled to do my best for Mrs. Williams.
Though I was having a hard time, I didn’t feel dumb.
Outside of school, everything made sense. When I
looked at my dad’s oil truck, I knew exactly how it
worked and the mechanics of how the fuel went through
the hose and into the tanks. But I doubted myself
because I couldn’t read. Fortunately, somehow, I passed
second grade, more determined than ever that third grade
would be a fresh start.
Unfortunately, a month and a half into third grade, I was
barely treading water. In class, I felt more and more like
an outsider. I couldn’t keep up, and my boredom was
maddening. At the same time, I was constantly on the
edge of my seat, hoping I wouldn’t get called upon and
be embarrassed in front of the class. My classmates had
mastered printing their names in second grade—a task
with which I still struggled. If someone asked me to
spell my first name out loud, I could rattle off N-E-L-SO-N. But getting that from my head and down onto
paper was a struggle.
That was the year we moved on to cursive, which to me
looked like scribble. Mrs. Clark handed out worksheets
every morning with the usual directive: “Write your
name in cursive on the top of your paper.” I really tried,
but every day my name came out as a jumble of illegible chicken scratch.
Mrs. Clark came up with a plan she felt would encourage me to try harder. One morning, we were busy hanging up our hats, gloves and coats, when she wrote
something big across the blackboard. We took our
seats and looked at the curious etchings on the board.
That’s when Mrs. Clark tapped her pointer on her desk
several times to get everyone’s attention.
“Class, class,” she said. “Does anyone know what I
have written on the chalkboard?” Nobody seemed to
know. “This is how Nelson Charles Lauver lazily scribbled his name on his paper yesterday.”
The room erupted in laughter and chanted, “Nezon
Chass Liver! Nezon Chass Liver! Nezon Chass Liver!”
“This is what you are to call Nelson for the rest of the
day,” Mrs. Clark instructed the class, “until tomorrow
when I’m sure his name will be something different.” I
laughed along with them to seem unaffected, but on the
inside, I was thinking: I hate you, I hate you for this.
Why are you doing this to me?
Lazy? I wasn’t lazy. At that moment, instead of being
thought of as the lazy kid, or the dumb kid, I chose to
be known as the “bad kid.” I knew there would be
ramifications, but in keeping with my new “bad kid”
persona, I pushed Mrs. Clark’s crazy-button at every
opportune moment. Making a face at her, making an
inappropriate remark, acting indifferent, or just ignoring
her helped prevent her from calling on me, for the sake
of her personal sanity.
Mrs. Clark often sent me to the hallway with my desk
and chair so I would not disrupt class. This was embarrassing because anyone who entered the school for any
reason could see me sitting there, alone. But that could
never compare with the embarrassment I felt at being
the “dumb kid.”
If, on occasion, Mrs. Clark did call on me, I’d often
54
ABILITY
throw something—a book, a pencil, a tablet. I got in
trouble routinely, and was frequently sent to see the
senior teacher and disciplinarian, Miss Marybeth. She
was a solid woman with a sturdy center of gravity,
strapping arms and shoulders, and not a touch of makeup. Her thick, blonde hair was neatly wrapped up in a
bun, atop which sat her ever-present prayer covering.
She was a pious woman who could recite the Bible
cover to cover.
Miss Marybeth’s disciplinary “office” was a desk inside
the janitorial storage room. Beside her desk was a chair
where she counseled children, right before she paddled
them. The construction of the paddle was well thought
out, and bore all the efficiency that could be crafted in a
Pennsylvania Dutchman’s woodworking shop.
Miss Marybeth’s paddle followed the age-old standard
design. The handle accommodated a double-fisted
swing. A dozen or so three-quarter-inch holes had been
drilled through the paddle to ensure it whistled through
the air with maximum velocity. The whistling sound
served another purpose, too: it struck terror into the heart
of the child who was about to be anointed with the sting
of hellfire.
I was sent to see Miss Marybeth for my first counseling
session after hurling a book at Mrs. Clark. I devised a
plan as I sat in the chair of counsel, waiting for Miss
Marybeth to arrive and warm my ass with religion. It
was a brilliant plan, I might add, and one of which I’m
still secretly proud. I decided to place the onus of my
bad behavior on someone else.
Finally, Miss Marybeth presented herself to deal with my
book-hurling infraction. She took the paddle down from
its hook on the wall and laid it on the desk as she prepared
to counsel me. I handed her a note from Mrs. Clark. She
examined it, refolded it, and laid it on top of the paddle.
“Nelson,” she said in her thick Pennsylvania Dutch
accent,“what do you have to say for yourself?”
I looked down at my shoes and quietly said, “I didn’t
do it.”
“Then do tell, Nelson. Who was it?”
I swallowed hard for effect, kept my eyes focused on
my shoes, and then softly uttered: “It was Satan.”
Miss Marybeth gasped and pushed back in her chair,
hurriedly reciting a passage to ward off the dark angel.
“Satan said he wants you to paddle my backside until it
turns purple,” I said.
Miss Marybeth sprang to her feet in defiance, uttering
a passage that included something about “the protective blood of Jesus.” She hung the paddle back on the
wall and boldly proclaimed, “I will not!” But the school’s male teachers
were not so easily manipulated. As my antics got me thrown out of class
again and again, I received regular paddlings.
One day, a teacher hit me at the wrong angle, and with such force that the
blow broke my arm. On other occasions, after being sent to the principal’s
office, I received “in-school suspension,” which meant being thrown into a
tiny vault with a heavy-duty steel door. The vault’s original purpose was to
store cafeteria money, locker keys, and anything else worthy of security.
But now, in the hands of the principal, it was a jail cell for incorrigible
youth. Locked in the dark for full school days, I breathed shallowly so I
didn’t use up all the oxygen. Inside that cell, I couldn’t tell whether five
minutes or two hours had passed, and I was always afraid I would die in
there.
In late summer 1974, I was less than five years away from being able to officially drop out of school at sixteen. At the same time, I felt a nagging concern
about what my future would hold. I kept telling myself everything would be
okay. I’d be able to make a go of it as a businessman or farmer. I just needed
to do the rest of my “time” first.
I actually hated the idea of becoming a drop-out because it meant everyone who
had ever said I was lazy and didn’t apply myself would now have irrefutable
evidence to back up their claim. Mom and Dad wanted each of their three kids
to have a diploma, and I knew they were going to be heartsick if I didn’t earn
mine. But from my perspective, more years of sitting in school and not participating seemed like a waste of time. I was 90 percent sure that if I stayed, the principal would eventually provide me with a diploma, just to get me out of his
sight.
One day, as I earned money painting lines for parking spaces, a guy pulled up
beside me to ask for directions. I rattled off the directions as only a local
could, and then pulled the start cord on my paint sprayer to get back to work.
The man went back to his car only to return several minutes later with a tablet
and pen, asking me to write down the directions. I told them to him again, as
he tried to force the tablet and pen upon me.
My struggle was painfully apparent to both of us. Finally, he took the pen and
the tablet back and asked, “You can’t read or write, can you?”
I paused for a moment, taking a deep breath. “You are correct, sir. I am functionally illiterate.”
“Have you ever heard of dyslexia?” he asked.
“Sir, I’ve never heard the term you just spit out,” I replied, “but my father had
me evaluated by some of the best medical minds, and I’m doubtful that, at this
point in my life, anyone can help me.”
“I disagree,” the man said. “If you are indeed dyslexic, as I suspect you may be,
there is great hope for you. Let’s sit down over here on the tailgate of your truck
and talk.”
We talked for an hour and a half, and I opened up to this stranger who had a
comfortable grandfatherly quality. I told him all about my school years, when
my reading and writing difficulties began, how I covered them up, and the
unfortunate results. I told him about my fears of being the dumb kid when I just
wanted to be normal.
The man went on to tell me that dyslexia has nothing to do with one’s level of
intelligence, and rattled off a list of people throughout history who were thought
ABILITY 55
to have dyslexia: Nelson Rockefeller, Franklin Delano
Roosevelt, Albert Einstein, and others.
“Dyslexia is simply a disconnect, a processing issue inside
the brain, which makes reading and writing difficult,”
the man said. “It has absolutely nothing to do with your
intelligence.”
Having a name for my challenge made me feel hopeful,
but at the same time, I was overwhelmed. If this was my
problem, how could I possibly get a handle on it? But
cautious optimism grew inside me. The man suggested I
start by contacting the Pennsylvania State Office of Vocational Rehabilitation (OVR) to get an expert evaluation.
By spring 1994, I was 30 and no longer functionally
illiterate. My reading had improved dramatically, but
not without 18 months of determined practice. The goal
of my rehabilitation was to help me reach my full potential in a career for which I was well suited.
That evening I called my mom and told her I’d met a
gentleman who thought I might have something called
dyslexia. She said that, just a few days earlier, she had
caught a news snippet about dyslexia, and encouraged
me to find out more.
As I weighed the options in my mind, my childhood dream
of expressing my thoughts and ideas over the airwaves
as a broadcaster appealed to me more and more. “I’d like
to be a broadcaster,” I told my caseworker.
My initial meeting with OVR took place at the Office
of Employment Security in Lewistown, PA. My caseworker secured me an appointment for an evaluation
with a doctor in State College, who indeed diagnosed
me with dyslexia. Although the doctor determined my
above-average strength in auditory processing (listening skills) would be helpful in my rehabilitation, her
official report noted great weakness in visual memory
and stated, “because of his age and the severity of the
involvement, extensive intervention will be needed.”
“Wow, we’ve never had anyone make that request. I’m
not sure where to begin.”
The bottom line: professionals believed it would be
nearly impossible for me to make significant progress in
learning to read and write on my own. My best bet, they
said, would be to hire a tutor and work one on one. I
returned home that evening to a message on my answering machine from one of State College’s graduate students, Cheryl. She offered her services as my private
tutor, at no charge, for as long as I needed. She said she
was willing to put in the time if I was serious about
learning. I immediately took her up on her offer.
I began 90-minute tutoring sessions, two to three
evenings a week, with Cheryl. She was amazingly dedicated and arrived each night with a fresh lesson plan.
Contrary to popular belief, the experience of dyslexia is
not akin to seeing words and letters backwards or upside
down. In my case, at least, it is more of a confused mass
of letters and words on a page—as if someone has placed
a piece of window screen over the text and moves it
around while I try to read through it. With Cheryl’s help,
I soon discovered that larger, double-spaced print made a
tremendous difference for me.
Cheryl also suggested we try placing various colored
sheets of cellophane over the text. Her plan worked! Yellow cellophane filters helped calm the chaos and anxiety
in my brain.
56
Another helpful tool came in the form of an inexpensive
set of phonetic audio teaching tapes I bought at a yard
sale for five dollars. The tapes sounded as if they had
been recorded around a kitchen table by a husband and
wife with a guitar, but they worked. After working with
Cheryl for six weeks, I found I’d made great progress. I
could read multisyllable words and could sometimes
read all the way to the end of a sentence. I was motivated to keep going.
ABILITY
I had been kicking the idea of becoming a broadcaster
around in my head for a while. I thought the best way
to start would be to visit a professional recording studio
and make an audition tape. My caseworker agreed and,
within a couple of weeks, I recorded my first voice audition tape at a studio in Lancaster, PA. On my tape, I told
a story about my Uncle Roy who, during World War II,
had been forced to parachute out of his aircraft after it
had been hit by enemy fire. Not only did he survive the
incident but, with the help of the French underground,
Roy spent 90 days on the run, disguised as a peasant
woman riding a bicycle. He eluded German troops and
triumphantly made his way back into Allied territory.
The studio owner thought it was rather odd to place a
story like this on a demo and tried to talk me out of it.
But being different was exactly what I intended. I wanted to be noticed.
I decided to throw myself completely into my new
career. I sold all of my line-painting equipment, except
for my pickup truck, and traveled around town, shaking
hands, smiling, and talking with everyone from ad agencies looking for voices for radio and TV commercials to
documentary filmmakers who hired narrators. Slowly, I
developed a studio schedule as a freelance voice-over
artist. As it turned out, the story on my demo tape
became the hook that made people sit up, pay attention,
and ultimately hire me. Producers loved the fact that I
was just a real guy who could tell a good story.
Narration work wasn’t that hard to come by, and later I
heard that Accu-Weather—one of the world’s largest
privately owned weather forecasting services—was hiring. Emboldened by my recent successes, I decided to
cold call Accu-Weather.
Though Accu-Weather’s director of broadcasting seemed
reluctant to take me seriously because of my lack of
“newsroom experience,” I finally convinced him to take
a listen to my audition tape. By the time I left his office,
I had a part-time job. Accu-Weather produced and sold
local weather reports to hundreds of radio and TV newsrooms throughout the United States and Canada. Here I
was, the kid who had been petrified to read in front of
25 of my fellow students, now reading the weather
broadcast to millions of listeners.
Occasionally, however, I was haunted by my school
years. I couldn’t go back and change anything, but I
wondered about all of the kids who might have been, at
that very moment, going through what I’d been through.
East Juniata still had the same principal, and most of the
same teachers were still there—even the bad ones.
In my mind, while I had accepted culpability for my
role in receiving a botched education, the principal and
the others weren’t off the hook if they were still using
the same teaching methods of my youth. I tossed and
turned in bed at night as I thought about the kid who
might now be locked up in the principal’s vault. I
thought about the kids who were now dealing with the
teachers who had paddled me and who had broken my
arm. Could I truly be considered rehabilitated if I simply
went on with my life with no thought for those who
might still be struggling?
The debate went on in my head for months. I finally
came to the conclusion that, at the very least, I needed
to approach the superintendent of schools and ask a few
questions regarding the current policies for identifying
students with learning disabilities, punishment practices,
and, most of all, use of the vault.
challenges. I inquired about current forms of punishment and, more specifically, asked if students were still
being confined in the school vault.
I wrote the school superintendent. When he didn’t answer
my letter, I wrote to him again. Even after I’d placed
several calls to his office, I was politely told by his secretary, “The doctor is unavailable to speak at this time.”
After a few more restless nights, I sat on the sofa in my
living room and stared at a list of phone numbers. Finally,
I mustered some courage, picked up the phone, and called
various local and regional news organizations. I told them
my personal story and expressed my concern that there
were still students in Juniata County with special learning
needs who were not receiving help. I also condemned
heavy-handed punishment and the use of the vault.
All hell broke loose. Members of the press showed up in
Juniata County with pens and pads, microphones, news
vans, satellite dishes and TV cameras. Within an hour of
the first news van rolling up to the school, a knock came
at my door. A private courier stood before me with a
sealed envelope that carried my name. Inside the envelope, on Juniata County School District stationery, was a
personal letter from the superintendent, requesting a
meeting to discuss my concerns at a time and place of
my choosing. I met with the superintendent and my old
school principal, two days later, in the district’s administration building. Both men were furious that I’d had
the audacity to contact the press.
I told the superintendent I simply wanted answers to
some of my questions: what steps are you taking to
identify students with special learning needs? Do you
still use the vault to lock up kids? Are students still
pounded into submission? Are children with learning
problems still paddled as “remediation” for their learning difficulties? What steps are you taking to become
compliant with the special education laws? But these
men only seemed to be interested in having me call off
the press. When I said I had no button to magically stop
the media from looking into the problem, the superintendent warned me:
“This will not go well for you, Lauver.”
I contacted various special education advocacy groups
throughout the state to inquire how the Juniata County
School District measured up against other schools, in
respect to providing services to children with learning
disabilities. I wasn’t surprised when I learned the school
district was seriously deficient and out of compliance
with state law. The Commonwealth of Pennsylvania
Department of Education was sadly understaffed in the
area of enforcement. It was a watchdog without teeth.
I wrote briefly of my own story and detailed the punishments I had received while attending East Juniata. I
expressed my concern for current students who might be
in need of special services to help them with learning
“I’m not afraid,” I told him. “I can’t imagine that, even
with all your power, there is anything you can do to me
that’s worse than what I’ve already survived.”
I left the two men in the superintendent’s office, both of
them frantically wondering how they could dodge the
media. I received letters, phone calls, and voicemails
from angry citizens who felt I had no right to “meddle”
in these matters. At the same time, my phone rang off
the hook with calls from parents who were concerned
about the overzealous punishments their children had
received at school. My fears were confirmed over and
over by parents who spoke of the lack of help for their
ABILITY 57
children with learning problems. Few parents were willing to stand up and fight, however, for fear of retaliation.
Reporters eventually lost interest in my concerns and
moved on to the next story, but a small group of parents
and community leaders started to organize and question
the practices of the Juniata County School District. For
the most part, their questions were ignored. Then Juniata County changed forever.
In a relatively short period of time, four separate suicides
of teenage boys from East Juniata High School rocked
our community to the core. Each of the boys had been
having trouble at school. Finally, the good and decent
people of Juniata County found their voices, stood up,
and started asking questions about the state of education
in the county.
This time, there were too many voices to be ignored.
The family of one of the boys who’d committed suicide
filed suit against the school district in the United States
District Court for the Middle District of Pennsylvania.
The lawsuit stated the young man frequently visited the
principal’s office, routinely pleading for academic and
emotional help. The suit asserted that the 16-year-old
boy had clearly been denied the services guaranteed to
him under state and federal law. After his concerns were
routinely ignored, the young man had finally reached
his breaking point. Feeling there was no hope for him,
he used a gun to take his own life, in the living room of
his family’s home. Attorneys for the school district bristled as they vowed to fight the “baseless lawsuit.”
It was obvious—after countless legal depositions from
many faculty, administrators and former students, such
as myself—that East Juniata High School had long been
an unpleasant and often brutal place for children with
learning problems. The depositions made it clear that, if
you were a kid in need of special help, Juniata County,
PA, was the last place you wanted to be.
Under oath, the school’s principal admitted he had, over
the years, used the school’s fireproof vault as an isolation chamber to punish students. Shortly after this
admission, the case was settled out of court for an
undisclosed sum, and the principal left East Juniata
High School after having served 30 years as principal.
The newly empowered people of Juniata County voted
in a new board of education, which worked diligently to
bring our schools into compliance with state and federal
laws regarding special education.
One day, out of the blue, I received a call from a
woman in Kansas, with a request that would take me
as far out of my comfort zone as I had ever gone. She
was the sales manager for a large insurance agency.
“I’m in charge of a group of insurance salespeople
who are having a lousy year,” she told me, “and they
need some motivation. If you come to Kansas and tell
the story of how your life started, the challenges you
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faced, and where you are today, I think my people will
be inspired. I’m looking for a real person with a real
story of determination and grit, and I know you’re the
person for the job. I’ll pay you $3,500, plus expenses.”
A month later, I appeared before this woman’s team. I
was nervous, at first, but as time went on, I loosened up
and began to enjoy myself. At the end of the talk, the
group gave me a standing ovation. I flew out of Wichita,
KS, that night, feeling confident and thinking I just
might want to pursue a career in public speaking.
After a bit of research, I learned about a gentleman who
ran a speakers bureau in Hollywood that specialized in
speakers with disabilities. I called him and, about six
weeks later, he called me back. He wanted to send me to
Minnesota to speak at a community college. This college
didn’t have a very big budget, and I don’t think he had
anyone else on his roster who would go for the small
amount of money offered, so he decided to take a chance
on me.
It proved to be a solid engagement, and the audience
liked me. Soon, the speakers’ bureau began sending
me out more often. I told my personal story to live
audiences all over the country. Just a few, at first, and
then more and more, as time went on. I spoke at corporate conventions, colleges, universities, governmental
agencies and teacher conferences. I even gave a
keynote address at NASA’s Kennedy Space Center.
But of the 1,000-plus speaking engagements I’ve had
since that very first one in Kansas, the one that stands
out as the most personally rewarding was on in October
2003, when I was invited to my old high school to give
a talk to a small class of about 20 students who had
learning disabilities.
I greeted the class of ninth- and tenth-graders and began
to share my story. I didn’t sugarcoat it. I gave them all
the details. I told them what it was like for me, 20-some
years ago, sitting in their same seats. I talked to them
about their futures and the fact that, if they have a
dream, they should never allow anyone to take it away.
Driving home, I knew I had helped to bring about the
change I had witnessed. But most of all, I realized the time
I put in as a student at East Juniata had not been in vain. It
had made me resilient and helped me find my voice.
theamericanstoryteller.com
Nelson Lauver
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1 Entrepreneur who set up a company which advocates for
and empowers deaf and hard of hearing clients, Moon
____
4 Foundation that brings strength and joy to children with
life-threatening medical conditions (3 words)
9 Congress testimony type
11 Infamous nurse in “One Flew Over the Cuckoo’s Nest”
12 People to keep up with, supposedly
13 “Man __ Fire” Denzel Washington thriller
14 It’s what motivates all survivors
16 Small heroes in “The Lord of the Rings”
20 It’s found between vertebrae
21 Santa sound
23 Medical problem faced by one of the main characters
in “Steel Magnolias”
25 Aragorn’s love in “The Lord of the Rings”
28 Immediately
30 Actress Vardalos of “My Big Fat Greek Wedding”
31 Blind man in “Star Trek, The Next Generation”
34 Well-liked
35 Founder of Arts and Services for the Disabled, Helen
_____
36 Old vinyl record
38 Now displaced by the DVD player
40 American Expressionist painter
43 Gala honoring high achieving deaf women (2 words)
46 Near, abbr.
47 Interview
48 Motocross champ, Ashley
49 Friendly alien who was persecuted when he came to
earth
50 2004 indie film about a high school girl who cannot
talk after a traumatic incident
52 In times past
53 The end is not __
54 After his sister died, he built or supported schools for
girls in Pakistan and Afghanistan, Greg ______
1 Star in “The King’s Speech," Colin _____
2 Boring routine
3 Manhattan neighborhood
4 Satirical magazine
5 R and B singer Green
6 Won his own show on Oprah’s network, Zach _____
7 Problem
8 Letterman or Leno
10 Nevada city
12 Famous shark film
15 “The _____ “ drama film about a mute pianist and
her daughter
16 Put down, slangily
17 Temperature controller
18 “Thar ___ blows!"
19 Road turn
20 Drops on blades
22 Unwelcome obligations
23 Guide ___
24 Hard work
25 US tennis star, first name
26 Girl from Ipanema came from here
27 Company that introduced a program to hire more
people with diabilities and the branches where they
introduced the program became the highest performing
29 Innovator
32 Long and slippery sea creature
33 Campaigned
37 After-school social
39 Life saving technique
40 Civil rights pioneer for the disabled, Bob ____
41 “Ebony and ___," Stevie Wonder song
42 Charity affair
44 Anaconda kin
45 Green area
49 “I’m a bigshot” quality
50 Figure out
51 Jeopardy winner, Jennings
52 Dawn time
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EVENTS AND CONFERENCES
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EVENTS AND CONFERENCES
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The ABILITY Build program
outreaches to volunteers
with disabilities to help
build accessible homes for
low income families. We are
currently seeking corporations, organizations and
churches to sponsor more
homes. This award-winning
program builds homes and
awareness, changing the
lives of everyone involved.
abilitybuild.org
[email protected]
abilityawareness.org
ABILITY 75