Regina Hall Issue

VOLUME 2010
REGINA HALL
APRIL/MAY
THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 Volume 2010 REGINA HALL APRIL/MAY
MAGAZINE
2
ABILITY
ABILITY 3
M ANAGING E DITOR
Gillian Friedman, MD
M ANAGING H EALTH E DITOR
E. Thomas Chappell, MD
C ONTRIBUTING S ENATOR
U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois
George Covington, JD
Gene Feldman, JD
E DITORS
C
HARKIN — The Benefits of Health Care
8
ASHLEY’S COLUMN — From Italy, With Love
Extremity Games
6
H EALTH E DITORS
10
HUMOR — Time’s A-Wastin’
12
NBC DIVERSITY SHOWCASE — The Peacock’s True Colors
14
CHRIS WADDELL — Pretty Tough Guy
18
BEYOND THE CHAIR — Hangin’ with Drew’s Crew
23
ABILITY HOUSE — New Place Like Home
24
WINTER PARALYMPICS — A Snowy Sports Report
28
CHILDREN’S MENTAL HEALTH — The Doctors are In
32
AMY ROLOFF — Cruising for a Cause
Scott Johnson
Guy Uesugi
38
SARAH REINERTSEN —Excerpt from In a Single Bound
P HOTOGRAPHY
44
REGINA HALL — Acting, Altruism and a Death at a Funeral
51
ABILITY AWARDS — We Like You, We Really Like You
52
ANDREA FRIEDMAN — Sarah Palin and the Family Guy Feud
56
EEOC BAD BOYS — Schooling the Employers
60
CROSSWORD PUZZLE
63
EVENTS AND CONFERENCES
Larry Goldstein, MD
Natalia Ryndin, MD
Paralympic Games Beijing
Regina Hall p. 44
C ONTRIBUTING W RITERS
Gale Kamen, PhD
Laurance Johnston, PhD
Andrea Kardonsky
Deborah Max
Myles Mellor - Crossword Puzzle
Dana Nelson
Paula Pearlman, JD
Richard Pimentel
Allen Rucker
Kristen McCarthy Thomas
Betsy Valnes
Andrea Friedman p. 52
W EB E DITOR
Mary Shafizadeh
Music Within
G RAPHIC A RT /
I LLUSTRATION
Amy Roloff p. 32
Nancy Villere—
CrushPhotoStudios.com
Makeup: Autumn Moultrie
Hair: Redell Scafe
T RANSCRIPTIONIST
Sandy Grabowski
ABILITY’s Crossword Puzzle
O
N
T
E
N
T
S
2010 Winter Paralympic Games p. 24
Liz Angeles
Diane Chappell
Dahvi Fischer
Renne Gardner
Sonnie Gutierrez
Josh Pate
David Radcliff
Denise Riccobon, RN
Jane Wollman Rusoff
Maya Sabatello, PhD, JD
Romney Snyder
DIRECTOR OF BUSINESS AFFAIRS
John Noble, JD
MARKETING/PROMOTIONS
Liz Angeles
Andrew Spielberg
Beyond the Chair p. 18
PUBLIC RELATIONS
JSPR
NEWSSTAND CIRCULATION
John Cappello
WWW.ABILITYMAGAZINE.COM
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Library of Congress
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© Copyright 2010 ABILITY Magazine
The ABILITY Build program
outreaches to volunteers
with disabilities to help
build accessible homes for
low income families. We are
currently seeking corporations, organizations and
churches to sponsor more
homes. This award-winning
program builds homes and
awareness, changing the
lives of everyone involved.
abilitybuild.org
[email protected]
abilityawareness.org
Olmstead by ensuring that individuals
with significant disabilities have access
to home and community-based services
and supports.
The CLASS Act is a voluntary insurance
program that provides an affordable way
for middle-class families to plan for the
possibility of future disability or chronic
illness. The program provides participants
who have a significant impairment a cash
benefit to pay for home assistance, transportation, or other essential services that
allow individuals to live in the community rather than in a more restrictive setting.
The Community First Choice (CFC)
option, based on the Community Choice
Act, is a new Medicaid program that will
provide home and community-based services to individuals with disabilities—services that are critical in allowing people
to remain in their homes and communities
and to lead independent lives.
THE HEALTH REFORM LAW:
MAJOR PROGRESS FOR INDIVIDUALS
WITH DISABILITIES
Dear ABILITY readers,
The new health reform law, signed by President Obama
last month, includes provisions that offer important new
protections and choices for individuals with disabilities.
These provisions—for which I fought very hard—
include, for example, prohibitions on denying insurance
coverage based on pre-existing conditions, increased
access to home and community-based services, and new
standards for accessible medical equipment.
Denial of insurance coverage based on a pre-existing
condition has long been a major problem for many individuals with disabilities and their families. That’s why
the Patient Protection and Affordable Care Act, when
fully implemented, will expressly prohibit insurers from
denying individuals health insurance coverage due to a
pre-existing condition. It will also prohibit charging
individuals with pre-existing conditions higher premiums or excluding them from coverage for specific conditions. In addition, health insurers will be prohibited
from excluding children from coverage based on preexisting conditions.
The new law also creates alternatives to long-term care
programs that will give individuals with disabilities
greater opportunities to remain in their homes and
communities. These two new programs, the CLASS
Act and the Community First Choice Option, help fulfill the promise of the Supreme Court’s decision in
6
ABILITY
Ten years ago, in the Olmstead decision, the Supreme
Court held that the Americans with Disabilities Act
(ADA) gives individuals with disabilities the right to
live in the least restrictive environments and to make
their own choices to receive their care in a community
rather than in an institutional setting.
Under current law, Medicaid is required to pay for nursing home care for an individual with a disability who is
financially eligible and who has an “institutional level
of need.” However, a state has no similar obligation to
pay for the same person to receive care at home. This
renders the promise of the Olmstead decision hollow for
the residents of many states.
The CFC option will, for the first time, require states
that choose to participate to provide all eligible individuals with personal care services, rather than serving
only a small proportion of the eligible population while
maintaining long and slow-moving waiting lists.
CFC is an option within the Medicaid program, and
each state will need to make a decision whether or not
to opt in. However, states that commit to the CFC
option will receive enhanced federal matching funds.
This is a very significant investment at the federal level
to providing individuals with significant disabilities the
choice of remaining in their communities.
The CFC option requires states that choose the option
pay for personal care services to help with activities of
daily living—such as dressing, bathing, grooming and
eating; and help with activities such as shopping,
chores, meal preparation, and finances. Readers of
ABILITY know very well that this assistance can make a
crucial difference in allowing individuals to live independently in a community.
The Act also includes an extension through 2016 of the
current Money Follows the Person program, another
one of my legislative initiatives, which supports individuals with disabilities who want to move out of institutional settings and back into their own communities.
The program provides enhanced financial support and
systems change to allow these individuals to do so,
with the Medicaid funds “following” the individuals
back into the community, to pay for their necessary services and supports.
Finally, the new law—borrowing from my Promoting
Wellness for Individuals with Disabilities bill—includes
important provisions regarding accessible examination
and diagnostic equipment. A major ongoing barrier for
patients with disabilities is the lack of accessible examination tables, weight scales, and mammography
machines or other diagnostic equipment for people with
mobility or balance issues. Under the new law, the
Access Board will help develop standards as to what
constitutes accessible medical equipment for patients
with disabilities.
These new initiatives represent significant progress in
our health care and long-term care systems for people
with disabilities. They encourage and enable independence, which is what all people with disabilities want.
You can be sure that, as chair of the Senate’s health
committee, I will continue to make it a priority to ensure
that we fulfill the great goals of the Americans with Disabilities Act: equal opportunity, full participation, independent living, and economic self sufficiency for all
Americans with disabilities.
We will not give up!
Sincerely,
Senator Tom Harkin
www.harkin.senate.gov
Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education,
Labor and Pensions Committee.
ABILITY 7
S
ince there are no races going on in the United States
right now, some of my sponsors have had me out
doing other fun things in while I wait for my training period to end and for my season to start.
Last weekend my mom and I went to a NASCAR race in
Bristol, Tennessee, where we got to meet and hang out
with the Red Bull race team. I wasn’t sure what to expect
but I had a fantastic time! Some of the Red Bull gang that
I know from California flew out, too, and met up with me
and my mom in North Carolina before we all drove over
to Bristol.
Once in Bristol, we met up with Kyle from Red Bull.
Kyle works the race circuit and really hooked me up! I
got to meet Brian Vickers and Scott Speed from the race
team, I got to sit in both of their cars when they were out
on the starting grid, and I also got to sit in the pit box.
The morning before the races, my mom and I even got to
take a ride in the pace car. I sat in front and my mom was
in back. It was a blast, but my mom was hanging on for
dear life and had her eyes closed most of the time!
It is nice to have sponsors who are involved in other
things besides motocross because it means I get the
chance to have different “sporting” experiences. I hope I
get to have some of these experiences again!
Today I am writing you from Italy, where I was sent to
participate in Red Bull Moto Chix. Ten amateur female
riders from Italy were picked to participate in this show.
My job, along with Stefy Bau (a retired professional
motocross rider and FIM coordinator), was to work with
the girls for a couple of days and get them ready for their
big race. The prize awarded at the end of the race was a
trip to the US for this year’s MxOn Des Nations in Lakewood, Colorado.
It took us four hours to get from the airport to the location
where filming and racing would take place. Once we got
there, we stayed in a big castle-like hotel that had a beautiful view and great food! I also got to ride on the track
that the girls would race on for practice. It was a different
kind of track than what I usually drive in the US. This
track was longer and had more large hills than I’m used
to!
The whole experience of working with the girls was a lot
of fun, and I am glad I got to meet and hang out with
them. One time, when I was sitting on my bike, all of the
girls gathered around me and Stefy. As Stefy gave them
some riding instructions, the girls all started looking
around and looking at each other. I didn’t know what was
going on, so I looked over at my dad to see what was
happening. He signed to me that everyone could hear
some kind of “beeping” noise, and that everyone was trying to figure out what it was. Suddenly, the girls started
moving closer and closer to me. Then one of the girls
pointed down to my cardio watch! I was like, “Oops, my
bad! That means it is 6:00 in America.” I guess when you
are deaf you don’t really need a beeping alarm to go off!
Now I am back in Northern Italy, close to Milan, and will
hang out here for a few days before my dad and I head
over to Bulgaria for the first round of the FIM Women’s
World Championship. I can’t wait! It’ll be fun to see all
of the girls and race with them again.
And I hope to see you at an outdoor USA national this
year!
Ashley with Brian Vickers and Scott Speed
ashleyfiolek.com
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ABILITY
ABILITY 9
T
here’s some talk around town. Some very scary
chatter. People say it is coming and will be here
before we know it. I don’t want to alarm you
but…the end of the world is just around the corner. I
know. Isn’t it exciting?
The good thing is, we have an exact date: Dec 21, 2012.
That’s according to the Mayans, who supposedly kept
the most accurate calendar in the history of man. (Yes,
even more accurate than the Quartzmen or the Timex
tribe of Bolo.) According to the Mayans, the Earth will
enter the region of space equilateral to the plane of the
Milky Way Galaxy. Nobody knows what calamity will
happen when we plunge into this highly energized
plane. We could blow up. Or we might not be able to
pick up AM radio stations. I say, prepare for the worst.
At least we have fair warning about when we should
stock up on bread, toilet paper and Skittles. I’m going to
get the essentials in 2011 just to beat the crowd.
10
ABILITY
Since the beginning of time, people have always been
claiming the world is going to end. Over the years, I
have certainly heard a slew (or is it gaggle?) of preachers spreading the dire warning. They say things like, we
have angered God, and according to the scriptures, we’ll
all be dead by next Tuesday. Of course, the only way to
prevent the impending doom is to give them money.
Then, after next Tuesday rolls around and we’ve only
received a smattering of light showers, the preacher
assures us that we pleased God with the money-giving.
We become elated, only to find out from the preacher a
few months later that God is on a tear and looking to
end the world again. Damn, where’s my checkbook?
I’ve been through a rainstorm, black out, riot, hurricane
and countless bad movies, but having never experienced
the end of world, I haven’t a clue what to do. Should I
pack? Turn down the thermostat? Cut the yard? Oh, and
what do I wear? I don’t know what’s “in” in heaven.
Oh my God, who would I get to feed my cats, Olaf and
Pepper? I guess I’ll just leave an extra full bowl of
Frisky Bits so they don’t eat each other. (There’s nothing more disgusting than cat-nibalism.) Hopefully they
understand the art of rationing.
I really wish I knew if this ‘end of the world’ thing is
for real. I don’t know if my heart can handle another
Y2K-type of let down. Was that a great excuse to party
or what? Folks were celebrating all around the world in
hopes of a major computer meltdown that would surely
bring a week off of work. The news hyped it for a good
year and…it never happened. That stuff makes me very
leery of forecasts. I still have troubling memories of
growing up back east, where the TV weatherman would
tout an upcoming “Blizzard of the Century,” then, come
the next morning…nothing. Not even a flurry. School
was still on and I was pissed. No, I didn’t do my homework. I trusted… a stinking weatherman.
Don’t act so surprised. You knew this day had to come.
Nostradamus threw out a couple warning quadrant calls.
He supposedly had a pretty good prediction batting
average, certainly better than Miss Cleo. Also, let’s not
forget biblical prophecies. Can you say Revelations?
Puts a little shiver in your boots, doesn’t it? We’re talking horsemen, plagues, earthquakes and famines, oh
my! Can you say Armageddon? Only God knows what’s
coming down the pike…and not because He has a
Magic Eight ball, but because He’s God. (Of course, the
bible also says, no one knows the hour and day when
these apocalyptic things will come to pass…So hear
that, Mayans? Don’t be a lyin’.)
Anyway, I want to say goodbye to some people I have
known, but I’m afraid. Who wants to look like the fool
if nothing goes down? I guess I’ll be vague with those
people and say something like, “Hey, if I don’t see you
by next Friday, know that I love you and I’m still planning on returning your leaf blower.” The end of the
world would also be a great excuse to patch things up
with people you’ve had a falling out with. “I just want
you to know, I didn’t sleep with your wife on purpose. I
forgive you for being angry with me.”
I really hope I’m around the day before the end of the
world. Can you imagine how many people are going to
be telling off their bosses? “You filthy pig, I quit. I’m
tired of working my fingers to the bone for chump
change and for that lame $20 gift card bonus to Pete’s
Pet Grooming.” I know I’ll take advantage of those last
days. I just wonder how many women will slap me.
“Come on, SugarNose, nobody’s going to say you’re
easy. They’ll all be dead tomorrow and so will you.
Whatta ya say? One for the road…”
I wonder how it will all go down. Will the earth fall out
of alignment and cause a destructive magnetic shift? I
guess we’ll know if our refrigerator magnets suddenly
fly off. Maybe we’ll be crushed by a gigantic asteroid.
You’re sunbathing in the backyard and a big rock lands
in your pool. It’s not pretty. Or, who knows, it could be
a mammoth tidal wave. You’re looking out the kitchen
window, and suddenly you see a wall of water rushing
at you. The only two words you can mutter are, “What
the—?” And let’s not forget the old stand-by of a
nuclear war. I don’t trust the Chinese or the Iranians
(but then again, I don’t trust anyone—I hide my valuables when my mom stops by for a visit). I’ve always
enjoyed a good fireworks show, so maybe a nuclear war
might be kind of neat, except for the whole blisters-onthe-skin thing. (Keep calamine lotion in the medicine
cabinet, just in case.) Look, whatever it is, I say enjoy
the ride. I just hope that whatever happens, I’ll be in
bed. I always feel safe in my bed—I can always hide
under the covers.
Call me a maverick, but the end of the world doesn’t
seem so bad. No more waiting in traffic. No telemarketers calling. No minute-by-minute updates on the
healthcare debacle. No more cringing when you look
through your daily mail stack. Could you imagine a billfree afterlife? Wow, I’d be in heaven. (I hope). Most
importantly, I’ll bet there’s something good on TV in
the here-after. Nobody could handle an eternity of the
trash we have here on earth.
I’m not sure when the world is going to end, but I think
there will be some signs. Things like: Brett Favre retires
for good. Sitcoms are funny again. Donald Trump’s hair
finally moves. The Jews and Palestinians gang up on the
Swedes. Katie Couric is admitted on Celebrity Rehab.
Michael Moore is diagnosed with anorexia. Keanu
Reeves gets an Oscar. Not knowing when the end will
come might even cause people to be good for a change.
That’s why old people behave. You rarely see grandma
car jacking or grandpa watching porno flicks. They
want to get through those pearly gates, and time is limited to make an impression on the judge.
I’m actually looking forward to the End Times. Do you
know how many women have told me they would only
date me if the world were going to end? Well, I guess
I’ll make some calls and set some dinner reservations. If
only hell would freeze over, my dating schedule would
be booked solid!
Maybe it is time to start fresh. Clean the slate. In all
honesty, I think the human race needs a “do-over” anyway. We’ve made way too many mistakes. Wars, pollution, crystal meth, the Macarena, New Kids on the
Block, Paris Hilton movies, that Kate and John
thing…oh, and the Flowbee (that was the vacuum cleaner that cut your hair for $9.95.)
So, get ready. Like Jim Morrison once slurred 40 years
ago, “This is the end, my only friend. The end.”
“Ham on
a Roll”
by Jeff Charlebois
jeffcharlebois.com
ABILITY 11
The cast of NBC’s third annual Diversity Showcase takes a collective
bow before an audience at West Hollywood’s Renberg Theater.
W
riter and actor Jim Troesh will be the first to
tell you he’s the best-connected quadriplegic
working in Hollywood today. Then he’ll
remind you he might just be the only one. But thanks to
industry events like the NBC Diversity Showcase, an
increase in representation and opportunity seems a
slightly more attainable reality for entertainers accustomed to being overlooked by the Hollywood scene.
“I know quadriplegic is a really scary word,” said
Troesh, whose acting resume includes appearances on
After MASH and Boston Legal and a recurring role on
Highway to Heaven. “But I’d really like Jim Troesh to
make enough money to take care of Jim Troesh. I want
my work to connect with some people, to make a few
statements, to show that yes, I have a life. That way
people can really try to get to know me before they get
to know me.”
Troesh’s comedic piece, “The Gimp and the GILF,”
about a wheelchair user and a unique sexual fetish, was
one of nine short scenes selected for this year’s showcase. The event, organized as part of NBC-Universal’s
Diversity Initiative, is one element of the network’s
ongoing effort to discover and promote unique perspectives in entertainment. This year, says event co-producer
and NBC diversity executive, Karen Horne, there was a
concerted effort to include more seniors and people with
disabilities among the showcase talent.
“Diversity means really trying to tell a story through a
new mindset, a fresh perspective,” Horne said. “It takes
12
ABILITY
just one success, one risk, to start opening people’s eyes
and to show them that inclusion is something that can
and should be done. It’s not such a big chance if someone does it and does it well.”
Utilizing the resources of the Writers Guild of America
Access Department, the Media Access Office, and the
NBC Directing Fellowship Program, Horne and co-producer Kendra Carter assembled a slate of acting, directing and writing talent of greater diversity than is found
on most TiVos. Stories presented included those of a
young Chinese woman and her questions of cultural
assimilation, elderly women commiserating after a
funeral, and a pair of lesbian friends who wrestle with
the unique complexity of their relationship.
For Reem Mahmood, who played a young woman
growing closer to her mother in “Love, Lee,” diversity
showcases like these offer hope that the entertainment
industry is catching up to the multicultural reality in
which we all live. “There’s finally coming a point in
Hollywood,” Mahmood said, “at which studio and network heads might realize what’s so attractive and exciting about a melting pot. Who says there isn’t a Meryl
Streep in another race or with a disability? Bring these
people out. Place them in roles that aren’t traditional.
That’s how you really discover talent.”
But in the meantime, few of these performers are content to sit quietly. Both Mahmood and Troesh say that
the general scarcity of true inclusion and diversity on
television has compelled them to channel their voices
Actors Ali Stroker
and Izzy Diaz perform in "I Promise I
Won't Get Mad"
Actors Amentha
Dymally and
Richard Redlin
Actors Ali Stroker
and Izzy Diaz
Actors Robert Owens-Greygrass and
Coley Mustafa Speaks perform in "Ten"
(l to r) Showcase scene directors Eli Akira Kaufman, Jasmine Kosovic,
Dempsy Tillman and Showcase co-producer Karen Horne
and experiences into creative material of their own.
Mahmood has written “Arab America,” a television
pilot about a girl of Iraqi heritage growing up in California. Troesh writes, produces and stars in a series of web
videos called “The Hollywood Quad,” in which he takes
a comical look at his professional, sexual and social
exploits. The liberating process of creative engagement,
Troesh says, has frequently shed new light on his disability and self-perception. “I’ve always felt like kind of
an outsider, even at Hollywood parties,” Troesh said.
“So I tend to write scripts about being on the outside
looking in. And the more that I write, the more I realize
that everyone can relate to that feeling. So I just keep
writing.”
But according to television writer-producer, Felicia
Henderson, it’s just that kind of specificity, that relatable
yet unique exploration of personal challenges, that is too
often lost in an overarching effort toward multicultural
representation in media. “You still don’t see a lot of
television that’s told from a specific point of view,” said
Henderson, who acted as creative consultant for the
showcase and has worked on such series as Fringe and
Gossip Girl. “The focus lately is, ‘How do we include
all kinds of people in a mainstream setting?’ But what
about really exploring a specific ethnic background or a
specific disability? It seems more important now to just
put someone in a wheelchair on a mainstream show
rather than to show the rich and interesting parts of his
life in the wheelchair.”
showcase selection “Getting Even” centered on a hearing
impaired legal professional, believes that a primary reason such rich and interesting stories often go unheard is
because too many talents of minority backgrounds don’t
feel comfortable sharing their wares in the marketplace.
“People wonder why there aren’t more minority writers,”
Chitlik said. “It’s because there aren’t more minority
opportunities. Because many of these talents aren’t
applying to film schools or theater programs. Because
they don’t see that they have roles in front of or behind
the camera. They don’t know if there is actually a place
for them.”
Whatever the obstacles that minority talents might face,
Horne and Carter remain optimistic that the ever-shifting landscape of television is making a place for anyone
with talent, drive and voice. Carter says that through
programs like Writers on the Verge, the Short Cuts Film
Festival, the NBC Director Fellowship, and the Diversity Showcase, the network is leading the charge to help
television, and television viewers, celebrate difference
as part of our societal fabric.
“The talent is out there,” Carter said. “We’re always
looking for it, and we’re excited whenever we find it.”
by David Radcliff
nbcunicareers.com/earlycareerprograms
hollywoodquad.com
Paul Chitlik, a television writer and producer whose
ABILITY 13
WADDELL ADDS “HALL OF FAME” TO
RESUME OF ACCOMPLISHMENTS
I
n conversation with Paralympic athlete Chris Waddell, you rarely get a true sense of his clout and
achievements. He’s humble. He’s methodical with
his words. He speaks of the things he’s still trying to
do—like change attitudes about disability—more than
he speaks of the things he has done. But all that he has
done makes up a pretty long list.
Sure, all the accolades and adventures must be nice. But
ask Waddell and he’ll tell you that his awards and
accomplishments only provide him a better platform for
the social change he seeks in perception of people with
disabilities. A change he’s working towards every day.
After all, Waddell remains one of the most accomplished US Paralympic athletes in the history of the
Games. The celebrated alpine skier not only competed
in the 1992, 1994, 1998 and 2002 Paralympic Games,
he also swept the gold medals in the 1994 Lillehammer
Games, winning all four alpine skiing events (Downhill,
Giant Slalom, Slalom and Super-G) and securing his
name in the history books with authority. Add to those
achievements a gold medal in the 1998 Downhill, along
with five silver and two bronze medals, and Waddell’s
total count for winter medals stands at a daunting 12.
Josh Pate: What does it mean for you to be called a
“Hall of Famer”?
Though it’s rare that any athlete compete in both the
Winter and Summer Games, Waddell has done that, too,
winning silver in the 200-meter push-rim wheelchair
event at the 2000 Sydney Paralympics. He’s also a former model, and was named one of People Magazine’s
50 Most Beautiful People in 1998.
JP: So you’re comfortable having others look up to
you? You’ll play that role?
But to Waddell, all of that is in the past. Lately he busies
himself by donating wheelchairs and handcycles in
Africa through his foundation, One Revolution, raising
social awareness of people with disabilities, and becoming the first American athlete to be inducted into the
14
Paralympic Hall of Fame. And just this past September,
Waddell mastered Mount Kilimanjaro, becoming the
first person with paraplegia to the reach the summit,
after a climb of 19,334 feet.
ABILITY
Chris Waddell: It’s pretty funny. Being a Hall of Famer
is not something I think about myself. It’s something
that I look at other people achieve and I think, ‘Wow,
that’s really cool.’ Because you look at the people you
look up to, rather than looking at yourself as someone
others look up to. But I hope that from where I am now,
I might be able to do for someone else a little bit of
what those I looked up to did for me when I was a kid.
CW: I’ve become more comfortable as time has gone
on. But it’s an interesting role, and there are definitely
responsibilities that come along with it. Since my accident, I now represent a lot more than just myself. That’s
been a role that I’ve come into, and so I try to live as
well as I can. I hope I can live up to that responsibility
while still fully knowing that no one is perfect. I see a
lot of my own blemishes, so I don’t want to live in a
role where I’m telling people that I’m perfect, that you
Chris Waddell—Paralympic Hall of Famer
should do what I do. But you should try learning from
your mistakes the way I have.
JP: When you think back on the ski accident in 1988
that left you paralyzed, do you believe that experience
changed your life in a positive way?
CW: Definitely. A lot of people look at me like I’m
crazy when I say that a lot of good stuff has come out of
the accident, but the thing is, I wouldn’t trade my life
now for what my life would have been. The accident,
and everything that has happened since, has shaped who
I am. I’m pretty happy with who I am as a person, but I
also think that there’s a distinct possibility that I might
have done more with my life the way I am now than I
would have done before. Because of that accident, I
might have developed a greater reach and I might have
made a greater impact. That’s a pretty cool realization,
and I certainly don’t want to ever discount that by saying I’d rather things would have worked out differently.
JP: What was your skiing like before the accident?
CW: I skied competitively. I started ski racing when I
was six years old, and I raced in Division 1 in college. I
was legit, but I was also good enough to know that I
wasn’t great.
it. Talk about a disconnect. So I really had to go and
learn a lot of things I might not have had to learn otherwise. I started skiing again three days short of the first
anniversary of my accident. That progression was an
interesting situation because it took me a good while
before I even felt like I could balance and get down the
hill. Then it really took me a few years before I felt like
I was back in control of skiing. I had my accident in
December of ’88, so it took me from ’89-’90 until ’92’93 to really feel like I was proficient.
JP: When you began to learn adaptive skiing, was it
your goal from the outset to be competitive, or did that
come later?
CW: Oh, it was to be competitive from the start. I was a
ski racer and I felt like I had never realized my potential
as a ski racer. So once I started to relearn, it was sort of a
seamless continuation, as funny as that might sound. I
thought, ‘This is what I want to do, and this sport is
going to teach me who I am.’ I guess I started off with
that idea and goal in mind, and it really taught me a bit
more than I’d anticipated. Even after my accident, skiing
is still the same sport and still the same pursuit for me
that it has always been. So I was going to be competitive
all the way along, and I was actively looking for that
chance—looking to make myself into a great ski racer.
Luckily, I was successful, at least in some people’s eyes.
JP: What was it like making your progression into
adaptive skiing and learning a whole new approach to
getting down the mountain?
JP: What do you mean when you say that the sport
taught you who you are?
CW: Learning a different approach is exactly right.
Essentially my mind knew what I was supposed to do,
but my body had absolutely no ability whatsoever to do
CW: With a sport like skiing, there is just so much that
goes into being successful. You have to conquer your
own fears and worries and insecurities. That process
ABILITY 15
Chris Waddell and
helpers carrying
wood planks to
navigate the
tough terrain
taught me a lot about myself because, in order to be successful, I really had to find a way to master myself. To
achieve the success I did, I had to overcome my particular deficiencies. The funny part is, that process is no different whether you’re able-bodied or have a disability.
JP: Very few athletes compete in both the Summer and
Winter Games, but you were able to do that. Why did
you decided to pursue the Summer Games after having
so much success in alpine skiing?
CW: Part of why being inducted into the Hall of Fame is
really meaningful to me is because one of my heroes
when I first started skiing was a guy named Jim Martinson. I met him as a ski racer when I went into his shop
where he builds wheelchairs. I wanted to get a racing
wheelchair built for myself, and Jim had won the
Boston Marathon. He also had won the Peachtree Road
Race. He had won all of these big races and was a guy
who I really looked up to. That was a really big deal. He
was a big part of the reason I ended up going into two
sports, simply because I had seen that he had done it. I
had seen how successful he was and he became my version of what it meant to be a successful athlete.
JP: Every role model has his own role model.
CW: Oh, most definitely. Jim is still my role model
16
ABILITY
today. The guy is 63 years old or something and still
going fast. It’s all a matter of how people approach their
lives. I look at Jim and I say to myself, “Wow, I’d love
to be like him. I want to bring that sort of passion and
enthusiasm into what I do and achieve the same fun
while being super-competitive at the same time.” I’m
still trying to follow in his footsteps.
JP: Now let’s tackle the big topic: Mount Kilimanjaro.
It’s obviously a huge accomplishment for anybody to
climb that summit. Why did you want to do it?
CW: I felt like Kilimanjaro was an extension of what I
had always tried to do as an athlete. As an athlete with a
disability, I felt I was there to represent possibility and
really to take people’s imagination and try to stretch it a
little. It’s so easy for people to look at somebody in a
wheelchair and say that you can’t do this or you can’t do
that. So I wanted to surprise them. And I felt like in
achieving that, I would be able to make a real statement
about people with disabilities. I’d force the general public
to revisit what they think they know. As an athlete, I
didn’t feel that my reach was as great as I wanted it to
be. Paralympic athletes weren’t on television, or we
weren’t on television enough. So people didn’t get a
chance to see what I saw when I was out with these
guys, and I wanted to share some of that experience. Kilimanjaro was an opportunity to create a bigger platform
and a greater reach, and climbing the mountain was
something that was really difficult, something people
wouldn’t assume I could do. So my hope is that I was
able to represent people in a positive way and shift that
paradigm a little. That was the attraction of Kilimanjaro.
JP: Talk about the preparation that went into your
climb. It’s not something one decides on a whim, right?
CW: It took a long time, about two years, to get ready to
do it. We took a scouting trip in June 2008 because we
didn’t know what we were up against. It’s easy to get on
the computer and get some images of the mountain, but
the images don’t really tell the whole story. So we had
to get out there and figure it out.
JP: Did doing your homework help?
CW: Yeah. I had thought I’d have a pretty good shot at
being able to do it, and that I could just muscle through
that first time. It was harder than anything I had imagined. I had thought, “Oh, it’s going to get harder when
we get to the top and it gets steep and the air gets thin
because of the altitude.” But it was difficult from the
moment we started, and it became way more difficult
than I had thought it would be.
JP: Tell us about the equipment that you used.
CW: It’s a handcycle that has 27 gears—a four-wheeled
vehicle with each wheel articulating independently. But
it was really like taking a Mars Rover and running it on
arm and pedal power. We could roll over things pretty
easily. I was just pedaling the whole time.
JP: What kind of modifications did you make to the
vehicle?
CW: We made some significant modifications: shortened it up, made it narrower, made it lighter and
increased the traction. That all made a huge difference.
We changed some of the drive-train stuff and some of
the internal gearing into traditional bike gearing, which
helped as far as efficiency was concerned. So we did a
variety of things. For me, it was just about putting in a
lot of long hours. We went and did the White Rim Trail
in May of last year, covering 105 miles in three days.
Our process was really about getting used to going over
a lot of challenging terrain, because I knew that’s exactly what I was going to see on the mountain. As I
became more skilled and more proficient, I could also
become more efficient.
JP: Now you’re a Hall of Famer who has been to the
top of the world. What’s left for you?
CW: Most of the goals I set now are for my foundation.
The mission of the One Revolution Foundation is to gain
equality for people with disabilities by eliminating obstacles, and one of the obstacles that we see a lot of is public perception, which is part of the reason I did the climb
in the first place. There’s a sense of pity, as in, ‘Oh, it’s
too bad what happened to you.’ What we’re trying to
portray instead is that what happened to you is not nearly
as significant as what you do with what happened. So
my climb and the Hall of Fame thing, in a lot of ways,
are just stepping stones to my ultimate goal and give me
a little bit more legitimacy. People listen to me now, and
they look at what I’ve done and see that there’s some
substance there. But we’ve still not even remotely
approached my ultimate goal at this point. These are just
starting points, because we’re really about increasing a
voice for people with disabilities.
by Josh Pate
Mount Kilimanjaro photos by Mike Stoner
Expedition Photographer and Videographer
one-revolution.com
People magazine’s 50 Most Beautiful People (1998)
people.com/people/archive/article/0,,20125242,00.html
Chris conquering Mount Kilimanjaro
ABILITY 17
In search of adventure, Andrew Shelley rides a
long-tail boat to an island in Phuket, Thailand.
B
y age 29, Andrew Shelley had secured himself a
solid education and a plum job as a systems engineer for an advanced technology corporation. But
he still couldn’t shake the feeling that something was
missing in his life: adventure. Defying his degenerative
muscular disease, his 90-pound body and the skepticism
of his own family, Shelley clocked out of his occupation
for good and set off to see the world, exploring New
Zealand, Cambodia, Thailand, India and Dubai in a
Frontier X5 all-terrain power wheelchair from Magic
Mobility and Innovation in Motion. Now at age 31,
Shelley is rolling his documentary film, Beyond the
Chair, into the festival circuit. ABILITY’s David Radcliff met with Shelley along with filmmakers Dusty
Duprel and Rachel Pandza to discuss their remarkable
journey.
David Radcliff: Drew, this film seems particularly epic in
the sense that you were feeling frustrated with your own
body and your limitations and just decided to pack up and
travel the world. How did you even come to that decision?
Andrew Shelley: I have muscular dystrophy, which is a
progressive wasting away of the muscles. So I had gotten to a point where I couldn’t walk anymore and needed a power chair. I really didn’t want one, and I kept
putting it off. But once I finally did get it, I realized,
“Wow, I can go everywhere! This thing could really
take me around the world!”
Radcliff: That must’ve been pretty liberating.
18
ABILITY
Shelley: Yeah. I was at a point at which I really wanted
more out of my life. I was tired of doing the same thing
every day, and I knew I wasn’t going where I wanted to,
so I quit my job and said, “I’m gonna get out of here.”
Radcliff: And you’re surprisingly non-chalant about
that decision. In the film, your mom just says, “Andrew
called me up and said he was going to travel around the
world.” It was really that simple?
Rachel Pandza: Well, I think his mom was pretty
freaked out at first.
Shelley: She and her friend had this crazy idea that
they’d follow me and be in all the same cities that I’d be
in, maybe meet up once a day or if I needed anything.
But I thought, “no thanks.” Because the whole purpose
of these things is to get away from your parents—to figure it out for yourself.
Dusty Duprel: I was Drew’s roommate, so I think
Drew’s parents had assumed we were going along with
him to help him travel. They’d say, “I’m sure he’ll be
fine because he’s with his crew.” But anytime we’d
explain that we weren’t there to help Drew, just to
observe, either they didn’t want to hear us or they pretended not to.
Radcliff: And what was your feeling, Drew, about having a crew around? It’s not exactly as if you were going
out there with strangers. These are friends of yours.
With the help of a guide, Andrew Shelley
(front) rolls downhill in an inflatable orb in
Rotorua, New Zealand.
Shelley: Sometimes it was frustrating, because they
intentionally weren’t there to help me, so they’d stand
back and film me doing things myself. But that’s how I
wanted it. I wanted to have to provide for myself and
see if I could do it.
Duprel: The only times we would help would be if there
were some kind of medical emergency, but not in dayto-day activities. It even got to the point where we’d
thought Drew was relying on our companionship more
often than he was actually alone, so we started staying
at separate hotels, away from him. His mom would call
and sometimes we’d have to be careful what to tell her.
Shelley: I think a lot of parents, especially parents of
people with disabilities, have this fear of letting go of
their kids. They want to be there to help them and protect them. But really the best thing for anyone is independence. I’ve traveled with my parents before,
through Europe, but it’s only so much fun with your
parents, you know?
Radcliff: Right.
Duprel: The thing is, Drew was a 29-year-old guy at the
time, but this was really his first rite of passage, in a
way. And he had to get out and be on the other side of
the world in order for it to happen.
Pandza: I think a lot of people actually perceived this
project to be more about recklessness than about independence. It just wasn’t understandable to them. “Why
would you endanger yourself doing everyday things on
top of this international trip?”
Radcliff: And how long was this trip, altogether?
Duprel: Two months. It was originally going to be longer.
You have to understand, though, that just sitting in a chair
all day is a piece of work for Drew. It requires constant
muscle activity, and then there’s malnutrition, constant
travel, exposure to airplanes with poor circulation, so his
body pretty much tapped out after two months.
Shelley: But I could go off-roading and kayaking and
backpacking on this trip and do all of these crazy things,
and then I’d go back to my hotel and slip and fall in the
shower. I mean, everything is dangerous if you really
look at it.
Pandza: I think the trick was just to trust that the right
things would happen and not be afraid and not hold ourselves back. First just go out there, take the trip. Then
you’ll figure it out once you get there, rather than come
up with all of these excuses not to go beforehand.
Duprel: On the surface, as filmmakers, the concept was
interesting to us—a guy with a disability in a wheelchair
traveling the world by himself—but then, as we started
to film everything, we really got to see that there was a
lot more to why this trip came about in the first place. I
think Drew was looking for solutions to his work, to his
relationship with a girl, and this general battle of “where
is my life heading?” Everybody gets to a place where
ABILITY 19
World traveler Andrew Shelley (center) is helped
to his motorized chair on top of Fox Glacier, in the
south island of New Zealand
you wake up one day and you realize, this isn’t the path
I want to be on. So I think that was really the start of it.
Radcliff: That sort of self-evaluation speaks well of you,
Drew. Especially now, when a lot of people might not be
happy with their jobs or their lives, but they maintain a
status quo because they don’t know what else is out
there. But this kind of adventure—I mean, how do you
even fund a project like this?
Duprel: Drew paid for his own trip, and then the three of
us formed an LLC and got some investors. But our budget was just enough to film this project. So there were
many times when we were moving without money or
food, and then the next week we’d find an investor. In
that way, the film really mirrors the trip itself. We left
not knowing what was going to happen, and answers
and solutions presented themselves as we went forward.
Pandza: We also realized, looking back at this project,
that Drew’s story really is similar to the hero’s journey
you see in most films. A lot of things in his personal life
were causing turmoil and moving him to go on this trip,
and he has a lot of ups and downs during it and comes
back a little different than before. So I think that’s
something audiences will really respond to.
Radcliff: Were there a lot of difficulties about this trip
that you didn’t predict? Anything you would handle differently if you had to do it all over again?
Shelley: I’d probably plan more. I’m the sort of person
20
ABILITY
who tries to fly by the seat of his pants, but I think what
I’d really want is more time. I’d like six months to fit in
all of the things I wanted to do. I would’ve liked to have
spent a week in each city instead of a day or two.
Pandza: I think people in this country are very acclimated
to not having a lot of change and not traveling in the way
that Drew did. So what we were doing was a little scary
for people to begin with. “You’re not staying in a hotel?
You don’t have a plan? You’re going off-roading?”
Shelley: Yeah, people thought I was crazy when I told
them I was planning to stay in hostels. I couldn’t even
get friends to come with me. “Why would you want to
stay in a hostel? Hostels are dirty.” But they’re actually
really cool places to meet people.
Duprel: And the thing about hostels is, you’re overseas
and you don’t know anybody, and then all of a sudden
there’s someone from your country there. So you have
an instant friendship, a real connection, even if it’s only
for a day or two.
Radcliff: How accessible were the places you visited, in
terms of disability accommodation?
Shelley: Most of the hostels were actually pretty good
and had accessible bathrooms and showers. And when I
was researching, I noticed that most places have a couple of steps going into the building, so my dad made me
these lightweight aluminum ramps that I could just carry
with me. Those were sometimes lifesavers. It was too
Cruising over a wooden ramp, Andrew Shelley
explores a river shore in Bangkok, Thailand.
expensive to rent a wheelchair van in most places, so I
used the ramps a lot to get into taxis.
Duprel: The real problem is that Drew is girl-crazy. So
it didn’t matter if a place was accessible or not accessible, if there were girls in there, that’s where he wanted
to stay. There was one hotel where he couldn’t get to the
bathroom, but he wanted to stay there more than anywhere else, because of the girls. We spent a whole day
crossing Mumbai just to find out that one place wasn’t
accessible at all.
Radcliff: Drew, I know you were an engineer before this
trip and that your father is an engineer too. Are you still
doing any of that kind of work now?
Shelley: No, not anymore. Now I just want to share my
story with people.
Pandza: Right now he’s writing a book and trying to get
into motivational speaking. I think that’s something he
realized when he came back from the trip: he didn’t
want to be an engineer anymore.
Radcliff: Were the people you met in your travels uneasy
around you or did you find them to be pretty welcoming
and accepting of your disability?
Shelley: Very welcoming. It seemed like everybody
would gather around me. Some people would just stare,
you know? Sometimes you’d have 50 people around
you, staring. A lot of people would help lift me into the
taxis or help take my chair apart.
Pandza: People were actually a lot nicer than I’d expected. They would see Drew, befriend him, help him, talk
to him. I think there’s a common bond in which Drew
brings something to people and people bring something
to him. And some people were very interested in learning about his chair, even if there was a language barrier.
Radcliff: That’s interesting, because I think a lot of people would just assume that once travelers with disabilities leave their homeland they won’t get much assistance. But it sounds like you guys got a lot of help, so
that had to be encouraging.
Pandza: I think even moreso in the third world countries, actually. In Cambodia, the people were just amazingly nice and always wanted to help. Little kids were
coming up and were curious about Drew. Everyone was
so generous.
Duprel: There was less concern that Drew had a disability and a lot more interest in his chair and how it worked.
Radcliff: It’s always interesting to me when family sometimes becomes more of an obstacle than the outside
world. In the end, it was your family you had to persuade, and in the outside world everybody was fine.
Duprel: I think that also carried over to Drew’s career
choice, actually. His family might tell him, “You need to
be an engineer because you’re not going to be able to
ABILITY 21
Celebrating an excursion across
the globe, Andrew Shelley spins
donuts by a lake in Queenstown,
New Zealand.
use your body.” But it’s really all about overcoming all
these things to be your own person. Everybody has to
go through that, but Drew has to go through it more.
Most people never stop to say, “What will make me
happy?” It’s usually more about, “This is what I need to
do to survive. This is what I’m going to do when I finish
school.” So there’s never much time to think, who do I
really want to be? And in the film and on the trip, we
got to see Drew try to answer some of these kinds of
questions. A week in, he was talking to people about
how they survive, about how they make money.
Pandza: And as society and Drew’s friends and family
are all trying to help him find the “right” way by choosing the easiest way, they’re also conforming him to what
he may not want to do at all. I think that’s part of what
will help make the film successful. It’s about the American story. Go to college, get a job, and then sometimes
you find out you’re not happy or you’re doing things
other people told you to do. And you don’t have a
chance to sit down and rethink your life.
Shelley: Yeah. My dad is an engineer, his dad was an
engineer, my uncles are engineers. I was always very
hands-on, so engineering was something I was good at.
I liked it, and I liked being around like-minded people
and having a good level of responsibility at Lockheed
Martin. But I knew it wasn’t enough.
Duprel: There’s a different mindset an engineer might
have in terms of evaluating his life. It’s generally about
science and practicality, it’s not about art. Drew’s brother has muscular dystrophy as well, so I think their parents were just really interested in trying to make a stable
life for them.
22
maybe he had a deathwish or something. But Drew’s
brother was the one who understood that Drew used to
be able to do a lot more than he’s able to do now. So this
trip was really a way to try to get some of that back.
Shelley: My brother isn’t quite as adventurous as I am,
so I don’t know if he’d do a trip like this on his own. But
I think he’s proud of me. Today I don’t think I’d have the
strength to be able to do that trip again.
Radcliff: So, no sequel?
Duprel: Well, Drew doesn’t really like the cameras. But
we’d like to try to spin this off to a TV series if we can
actually get the proper funding. We filmed almost every
second of this trip, so there’s a lot of footage.
Pandza: 360 hours of footage. So we’ve been reliving
those two months over and over.
Radcliff: How has a trip like that changed your relationships with one another?
Duprel: It’s really like a family, you know? I think we
got to see the best and worst in everybody, and we
ended up just having to accept it. We’ve been working
on this project for three years, so sometimes the relationships are strained, but they’re still strong relationships. And when Drew first proposed this trip, I didn’t
even think of it as a big story right away, because I
knew who Drew was. This is just what he does.
Radcliff: And you’re all still glad you went through
with it?
Pandza: In a way, I think Drew’s brother was really the
one other person who understood the point of this trip.
Shelley: Oh yeah. I have a sense of accomplishment
now, and I’ve proven that I can do something like this,
so now I figure I can go do even more. It was definitely
worth it.
Duprel: Yeah, I think some of Drew’s doctors thought
btcmovie.com
ABILITY
“BY THE PEOPLE, FOR THE PEOPLE!”
Y
ou’ve probably heard this common phrase thousands of times. But add the word “disabilities” to
the phrase (as in, “By people with disabilities,
for people with disabilities”) and the phrase suddenly
becomes much less common. However, if ABILITY
Awareness has its way, that uncommon declaration will
soon become familiar music to the ears of many Los
Angeles County residents. Working in concert with
Habitat for Humanity of Greater Los Angeles, ABILITY Awareness and its team of volunteers are staging the
build for the first Southern California “ABILITY
House” in Long Beach, California. By engaging volunteers with disabilities in every step of the process of
constructing a home, the ABILITY House program
demolishes stereotypes and limitations while also building a home for a family in which one or more members
has a disability.
Although Habitat for Humanity of Greater Los Angeles
and ABILITY Awareness have already partnered on
several successful ABILITY Builds in which volunteers
with disabilities collaborated for a day on a construction
site, their partnership on the ABILITY House in Long
Beach brings the relationship to a whole new level.
With some high-profile celebrity support and plans for a
festive groundbreaking ceremony, the Long Beach
ABILITY House is scheduled to be constructed over the
next year and to involve volunteer with and without disabilities at every stage of construction. Outreach for volunteers with disabilities to lend their skills to this venture is slated to begin on May 1, 2010, but several volunteer groups are already waiting eagerly to begin work,
including the New Directions, Inc., a group that helps
integrate injured veterans back into society during and
after their recovery, and the Junior Blind of Los Angeles. ABILITY House volunteers will also have a chance
to meet the family selected for home ownership, giving
the construction team a unique opportunity to experience the feeling of “giving back.”
On previous ABILITY Builds with Habitat for Humanity
of Greater Los Angeles, ABILITY Awareness volunteers
have helped re-roof and paint a home in Downey, California, have hung drywall, used power saws to cut
2”x4”’s, and have drilled holes, installed roofing, painted, framed and raised the walls on two homes in Lynwood, California. With this new Long Beach effort,
ABILITY House volunteers will be part of the construction process from start to finish. Whether laying foundation or adding the final delicate paint touches to trim,
ABILITY Awareness volunteers will seamlessly be integrated in the process of working alongside a Habitat for
Humanity team.
Once the home is finished and dedicated, and after its
new residents have moved in, ABILITY Awareness volunteers will be able to walk away with heads held high
and with the personal satisfaction that comes from having helped helping their local community. Perhaps even
more significant, the Habitat for Humanity of Greater
Los Angeles and ABILITY Awareness volunteers will
savor the satisfaction not only of having built a home
for a low- income family, but also of knowing that their
work has helped to shift societal mindsets from the standard, antiquated view of what society needs to do “for
people with disabilities” to a more progressive mindset
of how society can benefit from what can be accomplished “by people with disabilities.”
by Marci Casey
abilityawareness.org
ABILITY 23
T
he Paralympic Flame burned on an obelisk high
over Whistler Village, honoring 600 elite athletes
from 44 countries and celebrating the Vancouver,
Canada, 2010 Winter Games. Between March 13 and
March 23, athletes with disabilities competed in five
sports: sledge hockey, wheelchair curling, alpine skiing,
cross country skiing and biathlon.
More than a series of sporting events, the Paralympics is
a movement toward greater respect, inclusion, and
acceptance of people with disabilities. Touting the motto
“Spirit in Motion,” the 2010 Games offered fierce competition and some exciting victories. USA’s hard-fought
sledge hockey gold medal, the first American biathlon
win in history, and a total of 11 medals for USA women
alpine skiers were just a few of the Games’ more rousing highlights.
SKIING
Fog, sleet, and heavy snow plagued the first few days of
the Paralympics at Whistler Creekside and Callaghan,
causing delays in biathlon, cross country, and alpine skiing. Each skiing event consisted of three sections: sitting, visually impaired, and standing. “The course conditions are really variable,” said US Paralympic Team
Coach Ray Watkins. “You have to fight and that’s what
our team likes to do. We’re going to come out and
fight.”
Skiers in the visually impaired category were accompanied by guides who skied just ahead of them. Both athlete
24
ABILITY
and guide wore helmets with attached microphones and
headphones, gear which allowed each guide to scout
ahead and describe the course layout, often using words
like “bump,” “steep,” and “turn” to inform the competing
athlete what lay ahead for him or her on the slope. It was
the type of teamwork that relied on a deep trust and connection, as evidenced by the success of double bronze
winner Danielle Umstead, who was guided by her husband, Rob, and who took medals in Downhill and Super
Combined. Seattle native Mark Bathum took the silver
in Downhill with his guide Slater Storey. At the victory
podium, individual medals were awarded to guides and
athletes alike.
Women in the alpine “sitting” competitions skied outstanding races as well, leading to the accumulation of
more USA medals than in any other sport in these
Games. Stephani Victor, a filmmaker and actress from
California, won gold in Women’s Super Combined, and
Alana Nichols, USA’s most decorated athlete in these
Paralympics, won gold for both Downhill and Giant
Slalom. Victor nabbed two silvers, in Giant Slalom and
Slalom, while Nichols won silver in the Super G, as
well as bronze in the Super Combined. Laurie Stephens
won silver in Downhill.
Two alpine team members this year were military veterans. Heath Calhoun served in the army in Iraq and carried
the American flag during the Opening Ceremony at BC
Stadium in Vancouver. Chris Devlin-Young, who served
in the Coast Guard, medaled four times in previous
Paralympics Winter Games. He was the 2008 World
Cup champion in the Super G.
BIATHLON
Less popular in the US than in other parts of the world,
the biathlon draws upon expertise in cross-country skiing and rifle shooting. Although the Federation of Russia won 16 medals in the biathlon, it was a former soldier of the Afghan War, Andy Soule from Pearland,
Texas, who won the first American medal in the
biathlon, in either the Olympics or Paralympics. Soule
was also the first American to win any medal at the
2010 Vancouver Paralympics. Kelly Undekofler, the
other member of the Biathlon team, came in 13th in
the women’s standing.
CROSS-COUNTRY SKIING
Team USA’s six-member cross-country team, including
veteran Sean Halstead, pushed itself to the limit, but
was unable to take home a medal. “I didn’t ski fast
enough,” said Chris Klebl from Heber City, Utah. “It’s
the standard World Cup field that we see every race.
Some people obviously stepped it up. Most of the usual
contenders were at the top and there were a couple who
were faster than they have been recently.”
Monica Bascio from Evergreen, Colorado, was the only
American to qualify for semi-finals Sunday and finished
fourth in the first two semi-finals. Veterans Sean Halsted, from Euphrata, Washington, and Andy Soule finished 10th and 11th, respectively, in a field of 35 athletes. The Federation of Russia dominated cross-country, winning 22 medals.
Sit Ski Slalom
ADDITIONAL PARALYMPIC NOTES
wheelchair-based sporting series to rehabilitate World
War II veterans before eventually expanding to include
more athletes, non-military members, and people with a
variety of disabilities. By the first Paralympics in 1960, it
was no longer required that athletes be soldiers in order
to participate.
Whistler Village, home of the Victory Celebrations and
podium, was dedicated to the Paralympians. Shops were
filled with Olympic and Paralympic souvenirs. Trees
were decorated with delicate white lights, bands played,
and wide-screen televisions stood in the village squares,
displaying the intricacies of different Games.
At this year’s ceremony, three athletes were inducted to
Paralympic Hall of Fame, including Christopher Waddell, who was the first paraplegic to climb Mt. Kilimanjaro and who has won five golds and four silvers in past
Paralympics.
Individuals with visual impairments who participated in
the biathlon had an array of fascinating technology at
their fingertips. When athletes reached the shooting
area, their guides handed them headphones which emitted
a pitch that increased as the athlete’s aim drew closer to
the bull’s eye. After the athlete shot, the guide then took
the headphones, handed the skier his poles, and both
engaged in the cross-country skiing portion of the race.
A standard equalizing system was put into place to
account for different disabilities.
Whether athletes at the Games were walking or rolling
in chairs, the festive atmosphere that surrounded them
emphasized a dedication to the spirit of the Paralympic
Games. Between the podium and the ski mountain, a
small geodesic dome exhibited “Spirit in Motion,” essentially a mini-museum on disabilities that outlined the history of the Paralympic Games. The Games began as a
While skiers competed at Whistler and Callaghan, Vancouver was brimming with the Paralympic Spirit.
Though the Olympics had ended two weeks before the
Paralympics had begun, the enormous cauldron initially
lit for the Olympics steadily burned at the waterfront for
the duration of the Paralympic Games.
The Paralympic Opening Ceremony at BC Stadium in
Vancouver entertained 60,000 spectators and included
outstanding performances honoring the 1300 athletes,
coaches and guides. Performers with disabilities breakdanced on the their hands, wheelchair users danced in
choreography with 10-foot-tall balloons that displayed
images of athletes, and flames shot from one of the two
stages as a raucous band played. Between songs, poems,
and luminous projections, audience members shared teary
eyes and the widest of grins.
ABILITY 25
USA made semi-finals inCurling
The Opening Ceremony concluded with the lighting of
the Vancouver Paralympics torch, signaling the beginning of the Tenth Winter Paralympic Games. An hour
and a half south of Whistler, Vancouver was the site of
the week-long round-robin tournaments for wheelchair
curling and sledge hockey.
WHEELCHAIR CURLING
A quiet, almost solemn sport, wheelchair curling pits
teams of five against one another as each sends a 42pound rock down a narrow strip. Unlike other curling,
wheelchair curling does not include a “sweeper” who
brushes the ice before the rock. Instead, an attendant
wipes the rock before it is used in play. Additionally, a
person of each gender is required on every team.
Jacqueline Kapinowski from Point Pleasant, New Jersey, was “Lead” on USA’s wheelchair curling team. In
her first year of curling, Kapinowski made Team USA
and won bronze at the 2008 World Wheelchair Championship in Sursee, Switzerland. Off the ice, Kapinowski
is a wheelchair-racing enthusiast who has completed 52
marathons. In addition to being an expert wheelchair
curler, Kapinowski hopes to compete in track and field
at the 2012 Paralympic Games in London.
Other members of the US team included the “Skip,”
Augusto Perez, USA Curling’s 2008 Male Athlete of the
Year, military veteran Patrick McDonald, James Joseph,
who competed at the 2006 Paralympic Winter Games
and in three World Wheelchair championships, and
James Pierce, who competed at the 2006 Paralympic
Winter Games and in three World Wheelchair championships. The Americans, who did well through their
first sessions, reached the semi-finals. The wheelchair
curling gold went to Canada, the silver to Korea, and the
bronze to Sweden.
SLEDGE HOCKEY
Though it looks similar to other forms of hockey,
sledge hockey firmly attaches each of its players to a
metal sled that is balanced on two blades. The sledge
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America’s Sledge Hockey Team wins gold medal
hockey player’s stick essentially serves dual functions
as a scoring tool and as a propeller, allowing athletes to
slip it up and down swiftly as they glide along the ice.
Vying for the gold, sledge hockey players flew across
the ice, smashed into plexi-glass walls, and swarmed
the goalie while speakers blared the music of Lady
Gaga, Justin Timberlake, Taylor Swift and even the
theme from Green Acres. “The energy is building,” said
Andy Yohe, the captain of Team USA. “All the folks in
Canada love hockey and it’s exciting just to be able to
come and play in that environment.” Yohe, who lost
both legs while trying to jump onto a train, is a hockey
fanatic and a roller hockey player for the Bettendorf,
Iowa Young Guns.
After a grueling week of round-robins, the US faced
Japan in the gold medal games. Dodging flying pucks
and a dedicated adversary, Team USA secured an
astounding victory when goalie Steve Cash completed a
total shutout of the opposing team. This brought the US
sledge hockey team its second gold medal, a victory
made even sweeter for the US team as it occurred on
rival Canada’s home turf. Defeated by Japan in an earlier round, Canada’s sledge hockey team came in fourth
after Japan and Norway.
CLOSING CEREMONY
At the Closing Ceremony at Whistler, many called this
year’s Games the best Winter Paralympics ever. “Many
of you will go home as champions,” said John Furlong,
CEO of the Vancouver organizing committee. “You all
go home as winners. You have been remarkable ambassadors of the human spirit.” As Furlong spoke, sparkling
flames radiated around the surrounding mountains as
skiers carried the final torch and passed it on to the Federation of Russia, which is set to host the next Winter
Games in Sochi, 2014.
by Elizabeth Corcoran Murray
photos by Paul Murray
paralympic.org
ABILITY 27
David Coffey, MD practices Pediatric/Adolescent Psychiatry in Los Angeles, California
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W
hen your child or teenager demonstrates emotional or behavioral challenges, the task of
finding the appropriate mental health professional can be daunting. When your teenage daughter has
just confessed that she has been taking diet pills and laxatives to lose weight, you might feel a little like
Dorothy, unexpectedly thrown by a tornado into the
strange world of Oz. Maybe your nine-year-old son is
still sleeping in your room and pretends to be sick every
Monday morning to get out of going to school. Perhaps
your seven-year-old is having trouble learning to read
and is getting in trouble for talking too much in class. If
any one of these scenarios seems all too familiar, know
that you are not alone: it is estimated that one in five
children in the United States battles with a diagnosable
mental disorder at some point in his or her development.
So what can be done to help your child? The first step is
to decide to seek out professional aid. It is estimated that
half of all children in the United States who have a diagnosable mental illness go untreated. Lack of treatment
can put a child or teenager at risk of falling behind in his
educational, emotional or psychological development.
Once you have made the decision to seek treatment for
your child, knowing where to turn is often the next
biggest stumbling block. Dorothy had the Scarecrow, the
Cowardly Lion and the Tin Man at her side early in her
journey. Two easily accessible allies when you begin
your own journey toward the mental health of your child
are your child’s school counselor and primary care doctor. These professionals can often suggest an initial treatment or refer you to a mental health expert who can best
help your child.
Once you receive referrals, sorting out the qualifications
from the alphabet soup of titles can be daunting. Should
you take your child to an MFT, LCSW, PsyD, PhD, or
an MD? The table at the conclusion of this article
describes the training of each type of mental health professional, but all of these practitioners can provide psychotherapy to patients. Only psychiatrists, however, can
prescribe medication. Some mental health disciplines
have national board certification procedures as well, and
most states have licensure requirements for each type of
medical professional. Your state medical board website
can help you verify licensure status and possibly board
certification before you move forward.
Treatment for emotional and behavioral problems in
children and teens involves a variety of psychotherapies
or medications. There is a wide range of psychotherapies
to consider, including counseling, group therapy and
educational therapy, play therapy, cognitive behavioral
therapy and psychoanalysis. It is generally advisable to
try non-medication interventions first, although some
conditions or emergency situations might call for medication as the most suitable first line of treatment. Ask
your pediatrician or school counselor at the outset of the
referral if your child’s situation merits medication. If
psychotherapy is failing to yield timely progress, for
example, ask the therapist if a referral for an evaluation
for medication might be warranted.
When it comes to prescribing medication for your child,
the professional with the most expertise is a Child and
Adolescent Psychiatrist (CAP). Unfortunately, however,
CAPs are in short supply in the United States. It is estimated that, while there are only 7500 CAPs in the
nation, there are 15 million children and teens who
require treatment in this field. Even in big cities, it
might take months to secure an appointment with a
CAP. Because of this shortage of Child and Adolescent
Psychiatrists, about two thirds of all medication prescriptions for mental health diagnoses for children and
teens are prescribed by non-CAPs: pediatricians, general psychiatrists, family practitioners, neurologists, and
other physicians. Here are some tips on getting to a specialist for medication treatment:
1. If your current non-CAP prescriber is not able to
achieve sufficient reduction in symptoms, or if your
child’s side effects are becoming unmanageable, ask
your prescriber for a referral to a CAP.
2. Visit aacap.org, the website for the American Academy of Child and Adolescent Psychiatry, and click on the
link for Child and Adolescent Psychiatrist Finder (found
under “Quick Links”) to identify a CAP near you.
3. Check your insurance provider’s website and search
for CAPs in your area who are covered under your plan.
4. If no CAPs are listed within 50 miles of your home,
contact your insurance company and request that it pay
for treatment with a CAP outside of its network.
Many parents are reluctant to consider medication for
their children, perhaps due to an abundance of media
reports about children being overmedicated or inappropriately medicated. After the Food and Drug Administration released a warning that antidepressants could
increase suicidal thinking in children and teenagers, prescription rates for antidepressants dropped and, ironically, the rates of suicide completion increased. It seems a
reasonable truth, then, that wisdom lies in a safe middle
ground between over-medication and no medication at
all. If depressed suicidal teens are not responding to
psychotherapy alone, they may best be served by a combination of anti-depressant medications and frequent
psychotherapy. Here are some easy guidelines to follow
in determining when medication for a childhood mental
health disorder should be considered:
1. Your child’s agitation, aggression, recklessness or
poor impulse control has put the child, family members,
or others at risk of imminent physical harm. In such situations, hospitalization should also be considered.
2. The symptoms of your child’s mental health disorder
ABILITY 29
impede his or her ability to meet developmental milestones (e.g., academic progress, behavior commensurate
with intelligence level, healthy familial relationships, an
ability to make and keep friends).
3. Psychotherapies show little or no evidence of successful treatment but medication treatments show robust
evidence of successful treatment (e.g., psychosis).
4. Non-medication interventions, such as psychotherapy,
have failed to yield results. Additionally, medication
treatments have been proven to be effective instead of,
or in concert with, psychotherapies.
In addition to psychotherapy and medication, a variety
of other interventions exists to get kids back on the
road to mental health. This range includes therapeutic
and special education schools, speech and language
therapy, and occupational therapy. When multiple professionals are involved in the care of your child, it is
often helpful for them to communicate and work in
concert with one another.
Once a sound treatment plan is in place, your child or
teen can get back on track to grow and reach his or her
full potential. With help from the right wizard or a good
witch (and a few other new friends), your family can
effectively ease back onto the road to a place like home.
TYPES OF MENTAL HEALTH
PROFESSIONALS
PSYCHIATRIST: A physician with a doctor of medicine (MD) degree or osteopathic (DO) degree, with at
least four subsequent years of specialized study and
training in psychiatry. Child and Adolescent Psychiatrists (CAPS) specializing in treatment of children and
teenagers complete a two-year fellowship in child psychiatry and are then eligible to receive a subspecialty
board certification in child and adolescent psychiatry.
PSYCHOLOGIST: Might have a master’s degree (MA
or MS) in psychology or a doctoral degree (PhD, PsyD,
or EdD) in clinical, educational, counseling, or research
psychology. Most states license psychologists to practice
psychology. Psychologists can provide psychological
testing, evaluations, treat emotional and behavioral problems and mental disorders, and provide psychotherapy.
SOCIAL WORKER: Possesses a bachelor’s degree
(BA, BS, or BSW), a master’s degree (MA, MS, MSW,
or MSSW), or doctoral degree (DSW or PhD). In most
states, social workers take an examination to be licensed
to practice social work (LCSW or LICSW). The type of
license depends on the social worker’s level of education and practical experience. Social workers provide
various services including assessment and treatment of
psychiatric illnesses, case management, hospital discharge planning, and psychotherapy.
PSYCHIATRIC/MENTAL HEALTH NURSE:
Psychiatric and mental health nurses may have various
degrees ranging from associate’s to bachelor’s (BSN) to
master’s (MSN or APRN) to doctoral (DNSc, PhD).
Depending on their level of education and licensing,
nurses provide a broad range of psychiatric and medical
services, including the assessment and treatment of
psychiatric illnesses, case management, and psychotherapy. In some states, some psychiatric nurses
may also prescribe and monitor medication.
LICENSED PROFESSIONAL CONSELORS:
Licensed Professional Counselors have a master’s
degree (MA or MFT or MFCC) in psychology, counseling or a similar discipline, and typically have two years
of post-graduate experience. They may provide services
that include diagnosis and counseling (individual, family/group or both) and have a license issued in their state.
They may also be certified by the National Academy of
Certified Clinical Mental Health Counselors.
PSYCHOANALYSTS: Any of the above providers who
have completed their licensing requirements are eligible
to pursue further training in psychoanalysis. Psychoanalysis involves frequent patient-professional visits (on
the order of three or more times per week) and can take
the form of play therapy for younger children and lying
on the couch for teenagers and adults. Psychoanalysis
training takes five to 10 years and also offers a subspecialty training in child and adolescent treatment, which
can require an additional two to four years of education.
Accreditation and certification of psychoanalytic training
are overseen by the International Psychoanalytic Association and the American Psychoanalytic Association.
by David Coffey, MD
davidcoffeymd.com
30
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ABILITY 31
32
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Photo by: Nancy Villere - CrushPhotoStudios.com
A
s the big-hearted matriarch on The Learning Channel’s Little People, Big World,
Amy Roloff navigates all of the responsibilites and challenges of raising a family
while continuing to earn a slew of fans in the process. In addition to being a reality television star, Roloff is a soccer coach, a pre-school teacher and a philantrophist
whose Amy Roloff Charity Foundation makes full use of her celebrity by benefitting
people in need. ABILITY’s Chet Cooper caught up with Roloff to talk about her involvement with the Royal Carribbean celebrity cruise, her life in front of the camera, and her
favorite job: being a mom.
ABILITY 33
(l to r): Jacob, Zachary, Matthew,
Molly, Amy and Jeremy Roloff
Chet Cooper: Today we’re sitting onboard the Queen
Mary, but I know you’re also going to be on another
ship soon.
Amy Roloff: That’s right. It’s part of the Royal Caribbean
Oasis of the Sea. Royal Carribbean had given away an
auction package for a major golf and dinner event that I
put on last year, so I’m going on a celebrity cruise, and
part of each reservation on the cruise will go to benefit my
foundation, the Amy Roloff Charity Foundation. It supports kids, at-risk youth and disability groups.
Cooper: How long has your foundation been around?
Roloff: About a year now. Through the opportunities and
advantages that I’ve had in the last five or six years, I figured it was time to give back to all of the things that are
important to me. One of those things has been the Dwarf
Athletic Association of America (DAAA), which I happen
to be very familiar with. But I also help fund an organization for foster care parents and for the kids they adopt, as
well as for people in low-income senior housing.
We’ve also supported a family homeless shelter, which
is one of only a few in the Portland area that brings in
the whole family instead of dividing them up.
Cooper: You’ve got a lot going on in your life and yet
you still have time to be on TV. Tell me about your show,
Little People, Big World. How did that all come about?
Roloff: The Learning Channel (TLC) came to us about
five or six years ago, and so we suddenly realized we
were given a great opportunity to educate people about
dwarfism. When it was offered that we do a show about
our lives, my husband and I were like, “Wow, nothing
like this has even been on the air.” Nothing had depicted
dwarfism in an everyday way. Lo and behold, a few
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episodes turned into six seasons. And here we are.
Cooper: Has being on the show changed you at all?
Does it change how you see your disability?
Roloff: I think I’ve gotten to know myself a little bit
better, actually, and all the opportunities that I’m more
than able to do. Exposing your life to millions of people,
especially as a parent, is a daunting thing to begin with.
But I think this very public experience has helped each
member of my family grow. I think it’s strengthened us
so that we recognize our flaws and the best parts about
ourselves.
But in the end, I think the biggest change is in the general perception people have of dwarfism and how people
approach me. They’ve gotten to hear my story on the
show, and I in turn am able to hear their stories because
they feel like they know me before they’ve even met me.
In some ways that’s very humbling. We each have our
challenges, but someone always has a challenge that is
uniquely different from, and maybe even more challenging than, yours. So the show has been a great experience
of getting outside of our boxes and looking at other people and the things they’re going through and how maybe
we’ve helped them or inspired them.
Cooper: Are there any examples? Experiences where
you’ve made those kinds of connections?
Roloff: Oh, sure. I mean, just as I was going through the
airport, this security guard came up to me and said, “You
know what? I am so thrilled to have met you. You helped
my wife and I through something we didn’t even know
was going to happen.” They had found out that they
were going to have a dwarf child, a dwarf baby. So just
the experience of having watched our show encouraged
them and inspired them. It gave them hope, and it didn’t
create this sense of the unknown for them. They were
having a baby, it happened to have dwarfism, but
through our show, they were also able to see adults who
were dwarfs. So it gave some dimension to their expectations. It got them thinking, “You know what? My child’s
going to be okay. He’ll be able to be whatever he wants.”
Cooper: It’s a boy?
Roloff: I believe it is, yes. A boy about 19 months old.
And that kind of connection with this stranger was
inspiring to me because often as a parent you’re in your
own environment, you’re with your own family, and
you forget that regardless of what you do, you can still
be inspiring.
I remember another incident, this time at the beach,
when a woman came up to me and told me that she had
gone through some really heavy medical issues for
about a month. She had gone in for a surgery and then
doctors had found something else wrong with her and so
she had to have a second surgery. But she watched our
show, and by watching our show she felt inspired, and
that got her through the surgery. It took her mind off of
all of the stuff that she was going through medically.
And in turn, I told her about my foundation and what I
was hoping to do by utilizing the opportunities that I
had been given in order to help other people. Right then
and there this woman wrote a very significant check for
the Foundation.
Cooper: Can you give me her email address? (laughs)
Roloff: (laughs) Never would I have thought that I
could be as inspiring or that my family could be as
inspiring through the show as we apparently have been.
In the emails people send us, some people think we’re
great, some people think we’re not so great. But I think
in the long run it’s been wonderful, because I’ve been
able to start my own charity foundation, to look beyond
myself, and to help out some kids.
Cooper: Have you thought of tying any of the non-profit
work into the television show itself?
Roloff: The show actually incorporated my first major
non-profit event, which was the golf and dinner. So
that’ll show up in season five, as well as all the dramatics that led up to that event and so forth. The sad thing
is, I think too many people don’t think many people
with challenges or disabilities are able to contribute to
society in a truly significant way. I want to use whatever
influence I have to help non-profits which don’t get the
recognition they normally would but which are very significantly helping their local communities.
I worked at a Habitat for Humanity site with my kids,
and that was quite an experience. I’ve got average-sized
kids and a younger son who is a dwarf like myself, but
my own mindset going into this was, “What am I going
to do? What am I capable of doing to help this process
happen?” I mean, I knew what my average-sized son
ABILITY 35
Roloff family taking a slow trip
to China by way of shovel
could do. He and another gentleman, who was probably
one of the contractors there, set a goal to put the whole
roof on in two days. He was bound and determined. And
he’s built and physical.
But then I thought about my youngest son, my dwarf
son. What would he be able to do? Sure enough, he
found a niche where he helped put in all the lower windows. And me, I climbed up a ladder and put all the
braces up on the sheet rock. We each found our niche,
because we each had different capabilities.
Cooper: That must’ve felt great.
Roloff: It is empowering. In your mind you know you
can do it, but you just don’t know how to go about
doing it, or maybe someone has never given you that
opportunity. That’s why I’ve spoken to a lot of high-risk
youth and pregnant teenagers, trying to reach them at a
point where they’ve had so many people telling them,
“you can’t.” And even if you’re able-bodied, a lot of
people will tell you, “you can’t.” But whoever you are,
you’ve got to figure out who you are and what you’re
capable of doing.
For many people with disabilities, it’s a struggle sometimes each and every day just to do the basics. But once
you get that empowerment of going beyond just the
basics, it’s as if a whole world opens up for you. And
that’s what DAAA did for me. Just the experience of
playing sports—I couldn’t imagine. All of a sudden, I
finally realized what my brother loved about sports,
what so many guys love about sports. And then I found
out, “Oh, my God, I’m too competitive sometimes!”
Cooper: Well, that sort of thing makes for good
television.
Roloff: (laughs) It does. Ever since we started the show,
which has now been a part of my life for the last six
years, I’ve done some crazy stuff. Little stuff, but crazy
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enough for public. But listen, before the show, being an
at-home mom for the majority of my time, my world is
my four kids. You become very protective of that reality. Your world is sporting events, parents’ groups, and
stuff like that. The television thing has kind of broadened my universe. I went scuba diving in Las Vegas.
I’ve eaten grub worms. Silly stuff like that.
Cooper: How many cruises have you been on?
Roloff: This one in June will be my fourth. And to me,
it’s fabulous. These cruise ships create great experiences
for someone with a disability because everything is contained. You’re not on and off and stopping and going.
You can choose to go on the port of call or not. They
have everything on these ships.
Cooper: I went on a cruise for a group of deaf and hard
of hearing. There were more than 3,000 people on the
ship. I don’t sign, so it was interesting to experience
being the odd person out. I had to figure out how to navigate not only ALS (American Sign Lanuage) but international sign lanuages too.
Roloff: Isn’t that funny? You would think that sign language would be universal and all the same.
Cooper: And Royal Caribbean had actually prepared
for a year in advance so that their staff all knew basic
sign language and represented something like 70 different countries.
Roloff: When my husband and I went on our inaugural
cruise, I had to be pretty prepared to discuss our
dwarfism. I am, gratefully, very able as a dwarf person.
I’m married to a guy who has to walk on crutches and
use a scooter, and I know a lot of other dwarf people
who have multiple medical issues. But to have the freedom of just setting sail, especially when you’re on vacation and you’re spending your time and financial
resources, is no small thing. So sometimes you have to
help the staff understand that what they do isn’t always
going to be useful to a short person. For example, if I go
through a buffet line but the counter is way up above
me, I think, “Hello?”
At the same time, you don’t want to stop the staff’s flow
of how they deal with all of these people on the ship.
You just hope that somebody is in tune with you, that
the organization knows what it is doing. The employees
should say, “Okay, we’ve got to make a slight adjustment. Very minor, but something that would make it
easier and make shorter people feel comfortable.” A lot
of it might just come down to pre-communication,
ensuring that things are laid out smartly ahead of time.
Cooper: On the subject of adjustments, do you use hand
controls to drive your car?
Roloff: No. I am fortunate enough that I have pedal
extensions on my car that sort of raise the pedals to me.
I’ve never driven with hand controls in my entire life,
except for in driver’s ed. That was an experience—a lot
of driving up on curbs.
Cooper: This next cruise ship you’re going on, The
Oasis of the High Seas, is apparently almost double the
size of the Queen Mary in respect to passenger capacity.
That’ll be interesting to get around.
Roloff: Yes, we went on it on the inaugural cruise back
in November. What I really liked about the ship was that
it gives you the comfortable sense of having different
neighborhoods right there on the ship. I mean, at Central
Park, there are all these plants and flowers, and you
actually feel like you’re in a park. You forget entirely
that you’re actually on a moving ship. They’ve got different restaurants and a couple of shops here and there
and park benches to sit on. It’s just great.
Cooper: Will you be going SCUBA diving again this time?
Roloff: You know, I think they may have SCUBA diving lessons there, yeah. I know the ship has this very
deep pool, this entertainment aquatic area where a
bunch of shows are put on with divers. They’ve got
some great programs on the ship.
Cooper: I was told that you went rock climbing on one
of these cruises, and that your harness wasn’t zipped
closed. Is that true?
Roloff: Absolutely. I had to make it exciting, right? I’ve
also done ziplining, which was pretty hard, and flow
riding, which is kind of a boogie board thing. There’s a
lot of great stuff to do on these cruises. I think on the
next cruise we have a couple getting married who
signed up through my charity foundation. We’ve even
got a comedy club on these ships, so I actually went up
on the stage and did a couple of bits.
Amy Roloff with The Love
Boat’s Gavin MacLeod
Cooper: You’ve done stand-up?
Roloff: No, but the comedian I was up there with was
awesome, so we just kind of bantered back and forth a
little bit. It was fun.
Cooper: What do you think about political correctness
as it relates to dwarfism and how people treat people
with disabilities?
Roloff: Oh, that political correctness thing. You know, I
think we’ve become too politically correct, so I don’t
get too offended if someone doesn’t use the right terminology. Because, for the most part, the reason is a lack
of understanding. If someone is using these terms in a
negative way, you can usually tell. In my own life, I use
terms like “little person,” “dwarf,” “short-statured.”
That’s it.
The other word that has caused a lot of negativity is the
word “midget,” but I think a lot of that has something to
do with the tone and the connotation and the meanings
that people have put behind that word today, because
that was not always the case. The organization Little
People of America was first named Midgets of America
by Billy Barty. At the time, that might have been a
palatable term and word, but because time has passed,
that is not a word to use or describe dwarfism. It’s
“short-statured” or “little person.”
Cooper: That seems easy enough.
Roloff: Yeah. But I don’t get too concerned with what
people call me. It rolls off my shoulders. I’m just out
there trying to let people know that, regardless of any
disability, they have a lot more ability than they typically think. Sometimes you have to make your own opportunity and not wait for someone else to give it to you.
amyroloffcharityfoundation.org
tlc.discovery.com/tv/little-people-big-world
ABILITY 37
S
arah Reinertsen is a motivational speaker who
addresses corporate audiences across the country.
As a world-class athlete, she competes in dozens
of races every year. Sarah also leads a series of sports
clinics and mentors other athletes with and without disabilities. She lives and trains in Orange County, California. This is an excerpt from her first book.
The race is covered on live television in the New York
metro area, and in our house it was a tradition to tune in.
We’d zip home from church on marathon Sunday
(which is generally the first Sunday in November) so we
could watch the entire event from start to finish. We didn’t want to miss one second of my hero Grete Waitz,
that elegant and strong Norwegian woman who ran
through the streets of New York at an unfathomable
pace. I wanted to be like Grete. Knowing that Paddy
Rossbach had completed nine marathons helped make
the concept more than a pipe dream, and falling in love
with long-distance running turned the dream into a goal.
There’s a meditative quality about distance running that,
once my body got used to the punishment of the road, I
grew to love, so much so that 5Ks and 10Ks felt like
appetizers. I was ready for a full 26-mile meal, so I
signed up to run the 1997 NYC Marathon. The longest
distance I’d run to that point was 17 miles, and that wasn’t even consecutive miles, but rather 17 miles in a 24hour period. But I figured if I could do 17 miles in 24
hours, 26-plus miles in six-plus hours wasn’t unrealistic.
I also knew I’d had years of experience hiking through
the woods with my family during our summer vacations
in Highland Lake, New York, and if I could wander
over bumpy terrain for hours, I could hike through semibumpy Manhattan. Sure, I wanted to run the marathon
like Grete, but one step at a time; at the very least I
could hike or walk my way to the finish line.
CHAPTER 4
Jump at the Chance
For most who’ve dabbled in running, there’s a certain
mystique about a marathon. It’s a Holy Grail of sorts, a
seemingly unattainable goal, the race that modern runners
have been measured by since 1921, the year the 26 miles
and 385 yards distance was standardized.
The New York City Marathon is acknowledged to be one
of the coolest in the world, right up there with the Boston
Marathon and the Olympics. The route goes through all
five boroughs and takes the racers past streets and landmarks that all New Yorkers are intimately familiar with.
I’ve driven over the verrazano Bridge zillions of times,
but seeing all the racers sprint, run, and jog over the
bridge, with their multicolored track gear—it’s the helicopter shot of the 20,000-plus runners taking up every
lane on every level of that bridge that always gets me—
is quite a sight. The finish line is also an emotional
moment; to see the reaction as they cross the tape is at
once moving and inspiring. Each year a different drama
unfolds: agony and heartache, joy and triumph.
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ABILITY
The entry process was a relative breeze; most runners
have to enter a lottery to win a slot in the field, but the
New York Road Runners Club has a tradition of being
incredibly supportive of athletes with disabilities, so
after applying for one of the Achilles slots in the race, I
was given an entry form for the NYC marathon, even
though the race was three months away. I filled out the
race form and sent it along with my $65 check, and
when the mailbox shut, in that moment, I was both terrified and exhilarated. No turning back. It was real.
I went straight home and immediately called David Balsley, because if anybody could get me through 26 miles, it
was him. We discussed a tentative schedule, and I mentioned to him that I’d clipped some marathon training
plans from Runner’s World, but David told me I’d need a
completely different approach. “Look Sarah, you can’t
run fast enough to cover all the mileage those plans suggest right now. You’re an amputee runner, and you have to
train differently, and your focus should be on time.”
“Time? I just want to finish the damn race.”
“I mean, the amount of time you’ll be spending on your
prosthetic. You have to get comfortable being on it nonstop for hours at a time.” That’s something I’d never
considered, but it made total sense. “So when you make
your little schedule, instead of you saying, ‘I’m running
10 miles on Saturday,’ I want you to say, ‘I’m doing a
three hour jog/walk on Saturday.’ I don’t care how much
you run, or how much you walk, although I’d love for
you to run as much as possible. I just want you to do the
full three hours without stopping. The Saturday after
that, three-and-a-half hours.” That’s not the kind of thing
they’d necessarily suggest in Runner’s World... but
maybe they should.
Every long-ish walk was an opportunity to train, and
when my classmates saw me jog-walking from place to
place, they thought I was nuts. I was taking 17 credits
worth of classes at George Washington University (18 is
considered a full load), so between that, prepping for the
race for 10 hours a week, taking a pair of hardcore yoga
classes, and doing grunt work as a minimum-wage slave
at a media consulting firm, I was pretty maxed out, and
everybody knew it—except, of course, for me.
I didn’t go out much, and I didn’t miss the bars or the
party scene one bit. I went to bed early so I could go on
long training runs through the best of Washington, DC,
past the Jefferson Memorial with a bonus stair-climb up
to the Lincoln Memorial, then down to the Capitol
building, and past the White House, then back to my
studio apartment in Foggy Bottom. With each run, I
became both physically and emotionally stronger. I was
back on track, and jog-walking toward a bright future.
In terms of how I would perform at the marathon, I had
no expectations. How could I? My longest training jogwalk lasted five-and-a-half hours, which had completely
wiped me out; I was so sore the next day that I couldn’t
even muster the energy to walk to the library.
Now that I knew I could jog-walk for over five-plus
hours, I could start crunching some numbers: How many
miles did I cover on that five-hour training session? How
fast was I running? Okay, let’s say I did three miles per
hour. Multiply that times five, and we’re talking 15 miles.
But the question is: ‘How much slower would I be for the
last 11 miles?’ Or, ‘can I even make those 11 miles?’ I
eventually guesstimated that I could do them in seven
hours...or possibly eight...or maybe nine. Truth is, my
time didn’t matter. I was going to finish, dammit, even if I
had to walk 20 of the 26 miles.
And then, in a blink, it was November 1, the day before
the race. I crashed at David’s apartment on the Upper
East Side. He and his beautiful wife Maggie welcomed
me in, but I was dazed, not believing that I was actually
going to do a marathon. Dave just tried to reassure me
and showed me to their guest bedroom. The city was
alive and loud: ambulances and trucks roared by, and
people yelled at one another, but the noise in my head
drowned out everything. I began to doubt myself and
question the wisdom of signing up for this ridiculous
race in the first place. But there was no backing out. Too
many people were rooting for me, and I couldn’t let
them down. Also, I couldn’t let me down.
At 4:00 a.m., after a grand total of three hours of nervous
sleep, we took a car service to the starting area, arriving
just before the verrazano closed for the day. In the spirit
of helping out runners with disabilities, the New York
City Marathon organizers set up an early start time for
those of us who thought we’d take more than seven
hours to finish—we could start at 8:30, while the other
racers began at 10:45. At one point, I thought I might be
able to get in under seven, but I remembered seeing
20,000 marathoners cross the verrazano on television,
and it dawned on me that I could be slower just trying to
negotiate my way along with that huge pack of runners.
A Sunday New York Times in tow, we found a tiny spot
on the wet lawn in what’s called the Start village and
tried to relax; it was a cold brisk morning so we were
bundled in sweatshirts and sweatpants. I wound up not
really reading the newspaper, but rather sitting on it to
make the ground a bit warmer since we still had a couple of hours to wait. I distracted myself by listening to
the dozens of racers from other countries speaking to
each other in their native languages. It was a veritable
United Nations of runners, with many athletes wearing
the colors of their nations’ flags; some even carried
flags, or pinned them to the back of their jerseys.
The Start village is a quarter-mile away from the starting
line, so at 8:00 a.m., we headed over to the bridge. About
150 early starting runners gathered around: a few blind
athletes with their guides, a handful of folks in wheelchairs, some elderly people with walkers, and, of course,
a certain short, blonde chick from Long Island with a
missing leg. The New York City Marathon isn’t kicked
off with a mere starter’s pistol—that would be far too
small for the Big Apple. No, the New York City
Marathon is launched with a cannon...or at least it is for
the regular runners. For us early starters, it’s, “On your
mark, get set, go,” and then a little foghorn. Not exactly
what you’d call glamorous, but it sounded grand to me.
I knew I wouldn’t be able to maintain a standard legover-leg gait for the entire race, so I eased into the race
with a hop-skip step, which didn’t put as much strain on
my lower left back and helped me to conserve my energy. (They say the longest journey starts with a single
step, not a single hop-skip, but you have to work with
what you’ve got.) So David slowly jogged next to me as
I hop-skipped my way across the bridge toward the New
York City skyline, and the long day had officially
begun.
I had taken a public relations course earlier that year at
George Washington, and I’d become pretty media-savvy,
so a month before the race, I faxed out press releases to a
bunch of New York and national television and print outlets, saying, “Paralympic athlete, 100m world record
holder, and New York native Sarah Reinertsen is doing
her first marathon, blah blah blah.” As a struggling college
student who didn’t have any shoe or clothing sponsors,
buying multiple pairs of Nike Airs had become a hardship, so I figured some TV coverage could lead to some
ABILITY 39
sorely needed sponsorships. The plan worked: A couple
of newspapers interviewed me, and the NBC affiliate
tracked me down and told me to look for their crew
when we hit Brooklyn, around the ten-mile mark.
I was in pretty good shape as we continued running
toward the Queensborough Bridge—we’d already been
on the course for about three hours, and, thanks to
David’s regimen, I could do three hours in my sleep—so
my chipper banter with the interviewer and the ear-toear grin they showed on the 11:00 news that night were
completely sincere and legit. I was having a great time,
and everybody told me it showed. Len Berman, the
NBC sports anchor back in the studio, even signed off
the piece with a little, “Way to go, Sarah! Represent
New York!” I felt like a true hometown hero.
Almost immediately after the interview, the elite runners
started blowing by us, which was incredible. We had the
best view imaginable of those Kenyan wunderkinds
effortlessly breezing through their five-minute miles.
Then came the TV trucks, then came the average Joes
who, with their 2:30 finish times, really weren’t that
average.
The crowds along the streets of New York were magical, and by the time we ran up First Avenue in Manhattan, I actually felt like Grete Waitz. Unfortunately, when
I reached the water stop at the 16th mile, my lower back
started to really bother me. I took a moment to eat a
Cliff Bar and take a couple of Advils. The ibuprofen
didn’t seem to do much, so we stopped at the next medical tent a few miles later, and had someone rub some
Ben-Gay onto my lower left back. The smelly gel
worked wonders, and the weird tingling heat kept me
loose enough to get me through the next couple miles.
An hour later, at mile 20, my back started singing again,
but I didn’t really notice, because my entire body was a
bundle of pain, not to mention that I had nothing left in
my tank. Just like a lot of first-time marathoners, I hit the
wall, but David wouldn’t let that stop me: “C’mon,
Sarah,” he yelled, “you can do this. We’ve only got a
10K to go, that’s just six miles, you can cover that, no
problem. Just don’t stop moving; it’s going to be harder
to start up again if you quit.” He chuckled a little, then
continued, “You’re a tough chick, not just some blonde
bimbo. You finish this silly race now!” I laughed, then
soon fell into an autopilot zone where I was in almost a
comatose state, which might’ve been my body’s way of
helping me compartmentalize my exhaustion and pain. (I
once heard former championship cyclist and television
commentator Phil Liggett say about the Tour de France,
“You have to learn how to put up with a certain amount
of suffering.” Even though he was talking about bicycle
riding, you can certainly apply the sentiment to
marathons. When your legs beg you to stop, you ignore
their protests and keep pushing forward, regardless.) Fortunately, the onlookers woke me up, which is why I love
big city races—the crowd support is always amazing.
40
ABILITY
Their encouraging shouts and nonstop applause have
carried many a runner across many a finish line.
And then came the rains. (It was in the forecast, and I
was mentally prepared for it, but it still sucked.) And
we’re not talking a drizzle, or even a steady November
shower. We’re talking torrential downpours, accompanied by 20-some-odd-mile-per-hour winds. My clothes
and shoes got drenched, and the moisture added what
felt like ten pounds to my weight. I kept thinking,
‘What’s going to happen to my prosthetic? Is it going to
rust? Do I have any WD-40 at home?’
I started to complain about the rain, and Dave said, “So
what? It’s rain. Big deal. You gonna melt?” And then, to
cheer me up and distract me, he started doing imitations
of all the good cheers we had heard along the course. He
did the guy that shouted out, “Hey all right, baby, the
Bronx loves ya! You’re gonna make it sweetheart,” and
the animated lady in Harlem who screamed, “Ohmigod,
you are unbelievable! You go, girlfriend! You go!” That
local flavor is part of what makes New York runs so
magical.
And then, arm thrust in the air and a grin plastered onto
my face, I crossed the finish line in 6:32. This was just
as cool as an Olympic medal, and it was even more satisfying than breaking the 100m world record, because it
was sooooo much more difficult.
After the race, with the rain still turning Manhattan into
a flood zone, we walked back to David’s apartment on
the Upper East Side—that’s right, we walked, because
it’s impossible to find a cab in New York on Marathon
Day. My family was waiting for me at Dave’s place;
Mom, her boyfriend (now husband) Pete Fuentes, and
my Aunt Simone, gave me hugs and kisses. We ordered
some Chinese, and I shoved down dinner, then headed
off to LaGuardia Airport, because I had to catch the last
shuttle back to DC, so I’d be able to make classes the
next morning. I wore my medal on the plane like a big
old dork and basked in the glow of my victory.
The victory, however, was short-lived. The next morning
I learned that if you take the early 8:30 race start, and
you finish in under seven hours, you’re disqualified,
because they don’t want the masses taking unfair advantage of the jump on the crowd. So technically, I had disqualified myself by completing the race in under seven
hours. It was a small bummer, but I knew what I had
accomplished. My legs were sore, stiff, and living proof
that I did indeed run 26-six-plus miles in 6:32. According to the official scorekeeper, I didn’t finish the New
York Marathon. But if you’re scoring in the real world, I
definitely finished, and definitely kicked ass.
Washington, DC is beautiful, but I was beginning to find it
a bland, flavorless place. I was disenchanted by the political scene, and the charm of living down the street from the
World Bank had completely dissipated. Everyone I met
seemed to be a lobbyist or work on Capitol Hill, and I
was ready for a change. New York had a vibrant energy
that was completely lacking in Washington, and I was
ready to move back home.
One problem: I had zero job prospects, and you don’t
move to New York City without a gig. But fate intervened in the form of Paddy Rossbach. One week after
the marathon, she left a message on my answering
machine: “Hey, Sarah. Great job on the Marathon. I
wanted to pass along a message I got from a woman at
USC in Los Angeles, and she thinks you might be eligible for a scholarship for athletes with disabilities. How
would you like to go to grad school for free? Call me.”
Free grad school sounded perfect. I loved learning and
really enjoyed my classes at GW (especially after I
straightened up my act), so I wasn’t ready to stop being
a student. I never considered it, because the thought of
taking out more student loans—and thus taking on more
student debt—made my stomach hurt. But now, with
only a month left until graduation, I was presented with
an incredible opportunity to go to grad school. It would
be the answer to dreams I hadn’t even dreamt.
I decided to let the fates decide. I’d apply at USC, and
I’d apply for the scholarship, and if both of them came
through, I’d go to California. With fingers crossed, I
called Paddy, who put me in touch with Mara Redden
from the board of the USC Physically Challenged Athletes Scholarship Fund. The scholarship was started in
honor of a former USC All-American swimmer named
Mike Nyeholt. After becoming paralyzed from the neck
down due to a horrible motorcycle accident, he had lost
his eligibility for his swim scholarship. Fellow teammate Ron Orr pulled together a fund-raising swim-athon, with the goal of raising enough money to help
Mike pay for his tuition and for a wheelchair accessible
van, which would enable him to live independently and
get around school. That eventually evolved into an
annual fund-raising event called “Swim with Mike,” and
this scholarship program. Most of the athletes on the
scholarship were people who’d become disabled later in
life, e.g., the star high school quarterback who got hit by
a drunk driver, or the star baseball player who broke his
neck diving into a shallow lake. Using those criteria, I
wouldn’t qualify, but it was still worth a shot.
That night, I went to the school library to find out what
kind of programs USC offered. There was law school,
med school, business school, a cinema program, and I
was like a kid in a candy shop. Journalism still hit me at
a gut level—instead of being a politician who tries to
generate change, I could be a writer who succeeds in
generating change. All of a sudden, knowing there was
the possibility I’d be able to get into one of these programs, the world opened up for me.
Two months later, in January of 1998, I flew out to LA
and stayed in the Hollywood Hills with John Siciliano,
an amputee friend of mine who was going to USC on
the Nyeholt scholarship. He was a gracious host and
excellent tour guide. “I’ll take you to some classes,” he
said, “and I’ll take you around the campus, and the
scholarship people are having a planning meeting, and
you can meet everybody.” I loved it.
I loved the campus, I loved the California vibe, I loved
riding around in John’s convertible, I loved that I could
run outside in a jogging bra and shorts in the middle of
the winter and I loved all the admissions people. It was
a veritable lovefest, and I wanted in.
I interviewed for the scholarship, and I could tell they
weren’t convinced about me. Since I hadn’t done a sport
and then lost my leg, since I brought my disability to the
table from the get-go, I was in a gray area. I suspect
their thinking was along the lines of, We’re not really set
up for somebody like her. Where does she fit?
John spoke to one of the people on the scholarship
board, who told John, “She’s not exactly the kind of
candidate we give our scholarships to. Yes, she was a
high school track athlete, but that was after she became
disabled; we fund athletes that were athletes before they
became disabled.” John said, “She was seven when they
amputated her leg. What kind of athletic career was she
supposed to have? I know when she was six, she played
in the town soccer league one season. Does that count?”
“That’s not competitive athletics, and the amputation
was because of a birth defect, so I’m afraid she doesn’t
fit the scholarship criteria.”
I was deflated and disheartened. The window on grad
school had closed, possibly for good. I had just spent a
big chunk of change on this trip out to LA, and maybe it
had been for nothing.
The next morning, on yet another perfect 72-degree California day, John took me for a ride around the city. I
took in all the sights, resigned to the fact that I wouldn’t
be seeing all that much of LA in the immediate future.
We’d been driving for an hour when I spotted a mural
advertising the Los Angeles Marathon right along the
freeway, on the concrete wall by the 101/110 merger in
downtown LA. Stuck in traffic, I stared at this display,
and the wheels started turning.
I asked John, “Do you know when the LA Marathon
is?” He shrugged. “I have no idea. Why?”
“Maybe I should run it. Maybe I could get people to
sponsor me, and I could raise money for ‘Swim with
Mike.’ I mean, I’m a terrible swimmer, but I know I can
run. I truly am an athlete, and I would be a great addition to this school and scholarship fund, I just need to
show them.” John didn’t seem entirely convinced by my
plan, but he agreed to help me in any way he could.
ABILITY 41
The LA Marathon was in March, which gave me a
whole two months to train. LA was going to be more
difficult than New York because David wouldn’t be able
to run with me. But I’d finished one marathon, so I
knew I could finish another. I blew the dust off of my
NYC training schedule, bought some winter running
gear, and got busy. On race weekend, I flew back out to
LA and crashed at John’s place. I’d told the USC scholarship folks I would be running the marathon wearing a
USC hat and a “Swim with Mike” t-shirt, and would
also send in my pledges and donation checks after the
race. I didn’t know if it would nab me the scholarship,
but I knew it wouldn’t hurt, and it was a good program
to support either way.
About three miles into the race—which, it just so happened, put me right in the heart of the USC campus—I
came even with a reporter in a news truck who was interviewing some of the back-of-the-pack runners. I peered at
him for a minute or two, thought, Hmm, hmm, hmm, ahh,
screw it, I’m going for it, then ran up beside him and
yelled, “Hey, I’m Sarah! I don’t know if there are any
other amputees running today, but I came all the way out
here from New York to run the race on my artificial leg!”
I felt a bit silly, but I needed all the exposure I could get.
The newsie smiled. “Hey, Sarah, I’m Tim McLoon.
That’s awesome. I’ve got to go interview these Marine
guys...but if you stay to the left of the road, we’ll catch up
to you.”
“Okay! Right on!” Once again, the squeaky blonde onelegged wheel got the grease. Ten minutes later, Tim
rolled over for a chat, and this wasn’t going to be for a
package that would run on the local 11:00 news—we
were live. I was nervous and hoped I could actually
speak and run at least somewhat gracefully at the same
time. He had me introduce myself to the viewers, then
asked me why I was running. I said, “I’m raising money
for USC’s ‘Swim with Mike’ scholarship fund, and we
just passed the USC campus, and I’m so pumped to be
running for a great cause.” Tim then asked how I lost
my leg, and a few other follow-up questions and that
was it; it was all done in 90 seconds.
(I later found out that almost immediately after the
interview, the scholarship people started getting phone
calls, and the callers were all saying the same thing:
“Ohmygawd, I just saw this girl on NBC talking about
‘Swim with Mike’, and she was awesome.” My on-thefly plan was a huge success.)
After Tim tossed it back to the studio, he turned to me
and said, “No way!” “No way, what?” I asked. “You’re
from New York. So am I. And we need to exchange
information, because my neighbor is a seven-year-old
girl who wears a prosthetic leg. She’s going through a
tough time, and I have to connect you guys. I also work
on the New York City Marathon show. Have you run
that one yet?”
42
ABILITY
Now I’m not a big believer in fate, or destiny, or whatever, but there have been a few times in my life when
something happened that shook my lack of faith. It
turned out that meeting Tim was one of them. Something brought us together.
I finished the race in 6:15, and was shocked that in less
than six months I’d shaved about 15 minutes off my
time. What with the television appearance and the
money I’d raised, I thought the chances of getting a
scholarship looked pretty good, so much so, that almost
immediately after I got back home, I booked a flight
back to Cali for the big “Swim with Mike” event in
April, so I could personally deliver the donation checks.
That’d show them. Mom said, “You’re crazy. You’re
spending all this money that you don’t have. What if
they don’t give you the scholarship?” I said, “It’s a risk I
have to take. Think about it: I’ve spent about $1,000 on
plane fares, and I might get a $50,000 scholarship. It’s
an investment. A speculative investment. And I love this
school. I have to go there and swim with these people.”
And I went. And they were thrilled that I was there, but
they probably covered their eyes while they watched me
swim, because I stunk up the joint. While I was in the
water, I mostly clung to the wall as my friends John and
Paul Martin swam their laps. I spent most of my time on
the pool deck, where I met Mike Nyeholt, and schmoozed
with Mara.
At that afternoon’s barbecue, Mike Nyeholt’s former
teammate Ron Orr read off the list of names of the
scholarship winners. When he said “Sarah Reinertsen,”
I had to keep my cool, because it wasn’t the time or
place for a demonstrative Price is Right kind of display.
But inside, I was jumping up and down.
I wouldn’t learn if I was accepted to USC for another
month, but I thought my chances were solid. I had a
decent transcript from GW and a good score on my
GRE, but to put me over the edge, I included a TV news
piece that I’d edited with the help of my mom’s fiancé, a
news reporter for one of the local New York television
stations. It was a short feature that told the story of my
life using old VHS footage and home videos. The application was good enough, and in early May, a couple
weeks before my 22nd birthday, I was accepted into
USC’s Annenberg School of Communication, and it was
time to start packing up my life and moving out to the
West Coast.
Soon after the beginning of my first semester, it hit me
that the New York City Marathon was just around the
corner. I’d done LA in 6:15, which meant I’d improved
over 15 minutes in only my second race, and I wondered if I could make that kind of leap again: So I went
back home for a second round.
Tim McLoon was working the NYC Marathon and,
when he heard I was running, pitched my story to the
team that was covering the race. This wasn’t Len
Berman and the local boys; this was the official national
show that I’d watched back in Long Island. They bit.
Tim told me they didn’t have the budget to come out to
California to shoot the story, but if I flew out to New
York, it would be no problem. Since it would give me
the opportunity to see my family and get some work
done on my prosthetics, I booked a ticket that day.
And then, in a blink, it was race day. Confident that I’d
break seven hours, and not wanting to be disqualified
again, I started at the official race time of 10:45. I had to
weave and bob my way through the crowds, and Tim
did a live interview with me running on the course at
Fourth Avenue, after which they ran the pre-taped interview we had done weeks earlier. I couldn’t have paid for
that kind of publicity.
The race was my smoothest marathon yet. Less hopskipping and more out-and-out, leg-over-leg running led
to my fastest time ever. I crossed the finish line in 5:52,
and I was stoked with the 36-minute improvement. (I
can’t take all the credit for the bump. A brilliant prosthetist named Van Phillips had just designed a foot for
distance running called the C-Foot. It was a huge technological advance, and I was lucky enough to get one of
the prototypes.)
Back in Los Angeles, I fell into a nice groove. I was a
good little grad student, making friends, getting good
grades, and pseudo-dating a guy from San Diego. (The
dating thing was perfect, because a long distance semirelationship meant I’d only have to have a boyfriend on
weekends, which left weekdays free for training and
homework.) I was in great physical shape, probably the
best shape of my life, and was looking for another big
goal to conquer, because after four marathons, 26 miles
was getting kind of boring.
My roommate was a fellow amputee track athlete named
Jami Goldman. She was training for the 2000 Paralympics, and it set my brain a-spinning. Maybe I’ll try the
Paralympics again. Maybe there will be enough women
for us to have a full, fair race. Maybe I’ll finally win that
medal. Plus, I’ve never been to Australia, so why not?
It had been a good three years since I’d done any serious sprinting, and my short distance chops were a bit
rusty, so training-wise, I had to pick up where I’d left
off five years before. Training for sprints and distance
are two very different animals. For long runs, you can
pretty much slap on your shoes and go, but for short
runs, you need someone to be hands on, to run the stopwatch, to keep an eye on your form, to tell you to
“pump your arms, lean forward, have faster feet, only
10 meters left, so come on!”
logical resource available to me: the USC track team. I
popped over to track coach Ron Allice’s office, poked
my head in the door, and said, “Hey, I’m Sarah, and I’ve
been doing marathons for the last couple years, but my
background is in track, and I want to try and get fast
again so I can go to the Sydney Games in 2000.”
He said, “Sounds good. Let’s do it.” Ron was amazing.
He welcomed me as part of the team—he even got me a
locker in the varsity locker room where I could leave
my running leg and some shampoo. The whole thing
made me feel like I was hanging out with the cool kids.
It was a privilege to work out with the likes of Angela
Williams, the only person in NCAA history to defend
her 100m title for her entire four-year college career. I
enjoyed the college track experience I didn’t even know
I wanted…rah rah, Trojans! (I have to admit I didn’t
wear USC track clothes, not because I lacked school
spirit, but rather because dark burgundy and mustard
gold don’t look particularly good on me. I’m more into
blues and pinks.) I graduated in 2000 with a master’s
degree in broadcast journalism, and it was a melancholy
moment. I was ready to leave academia, but over the
past two years, I’d become an honest-to-goodness Trojan, who loved running on that USC track. Also, what
with my great professors and multitude of cool friends, I
knew I’d really miss the place.
A few weeks later, I went to Hartford, Connecticut for
the Paralympic trials and, long story short, didn’t make
the team. Yes, I was kind of bummed I wouldn’t be
going to Sydney, but I picked myself up, and started
looking for a job. And I got one. I got to go to Australia,
not as an athlete, but as an actual, honest-to-goodness
professional journalist.
I landed a gig as a field producer for WeMedia, which
was doing streaming Internet coverage of the 2000 Paralympic Games in Sydney. Olympic speed skater Dan
Jansen was our reporter, and the he and I worked trackside in the Olympic stadium, covering six to 10 hours
worth of track and field a day. We also put together
some video packages that were picked up for Fox Sports
Network. It was a ton of fun. It was also a ton of
work—at one point, I went 28 hours straight, without a
real break. I could barely speak, and Dan thought my
exhausted ramblings were hilarious. I have little memory of that day, which is no surprise, because by hour 20,
my brain was leaking out of my ear.
I knew it was going to be a short-lived position that
would conclude when the Games were done. But when
my time with WeMedia ended, I was pretty bummed,
especially since I had to start looking for a real job. Fortunately, a real job came looking for me.
alwaystri.com
I couldn’t fly to New York to work with David, so I figured I’d take advantage of what was probably the only
ABILITY 43
44
ABILITY
Photo by: Nancy Villere - CrushPhotoStudios.com
T
hough best known for her roles in the hit Scary Movie series
and on television’s Ally McBeal, some of Regina Hall’s
proudest work takes place well away from the glare of Hollywood. An avid volunteer for the care of senior citizens and an advocate for more public awareness of scleroderma, Hall, along with her
mother Ruby, sat down with ABILITY’s Chet Cooper to discuss the
rare skin condition and how it has hit her family close to home.
Chet Cooper: Regina, when we were talking earlier, you’d mentioned that your mom had been diagnosed with scleroderma. Can
you tell me a little bit about that experience for the two of you?
Regina Hall: My mom was diagnosed with scleroderma about six
years ago. It’s a condition that affects the skin and some other
ABILITY 45
Art by Kristian Olson, kristianolson.com
organs, and can take several forms. The type my mom
has is called CREST.
spend too much time outside when it’s cold because of
her condition.
Cooper: You do both have great smiles.
Cooper: Ruby, I know you’re technically retired, but
also that you still do some substitute teaching out in
DC. How is that experience? There are some tough
neighborhoods out there.
Ruby Hall: (laughs) Each letter stands for something.
Let’s see if I can remember all of them. C-calcinosis, RRaynaud’s, E-esophageal dysfunction, S-sclerodactyly
and T-telangectasias.
Regina: Fortunately my mother has an amazing doctor
at Johns Hopkins. I’ve been learning a lot about the condition, and I know that it predominantly affects women.
There’s not a lot of funding for research and treatment
of scleroderma, unfortunately.
Cooper: It’s fairly rare, isn’t it?
Regina: It is. But you know, it’s still more common than
people think. In the early stages of the condition, it
looks like lupus. It can cause a hardness of the skin,
blotching, development of red spots. In the most severe
cases, you develop acid reflux because your esophagus
begins to harden and swell, so breathing eventually
becomes difficult. Fortunately, my mother’s case isn’t
that intense, so that’s a blessing. But she does have Raynaud’s, so when she’s cold, she loses circulation in her
hands and feet. They turn white. So she doesn’t really
do grocery stores for long periods of time anymore.
Cooper: Because it’s difficult to stand or walk for long
periods of time?
Regina: No, because she’s affected by the colder temperatures at the grocery store. It’s really important for
her to keep her hands and feet warm. Even when she’s
just out driving, she wears warm mittens or driving
gloves. She lives in Washington, DC, but tries not to
46
ABILITY
Ruby: Yeah, but I was born in one of the tough neighborhoods. So when I was teaching, I came into my elementary schools as if they were any other elementary
school. I knew all the kids and they loved me, I loved
them. All my kids finished high school. Nobody got
killed or anything like that.
Cooper: How is your health otherwise? The two of you
had mentioned something about a stroke earlier.
Regina: Yes. My father died in 1994 of a massive
stroke. My mother had a mild stroke in February, but
she’s been doing wonderfully. She does rehab three days
a week and it’s really been great, too, helping her
strengthen her left side. She’s been stair-climbing, she’s
been walking. So it’s been good.
Ruby: Yeah, I feel fine. But when I first had my stroke,
it was the night of a big blizzard in Washington. It was
so bad, the medics couldn’t even drive up to the house.
They had to walk up. The nurse told me my pressure
was 120 over 150 and that I didn’t have to go to the hospital. So I didn’t go, but that Thursday morning I woke
up and I was feeling so bad. By Friday morning, I
couldn’t hardly make it to the kitchen to get any food.
So I decided maybe I should go to the hospital.
Regina: I read an amazing book for anyone whose family member has suffered a stroke. It’s called My Stroke of
Insight, and is about a woman, a brain scientist, who
had a stroke on her left side, leaving her right side
undamaged. It’s a really great book for understanding
strokes and what happens.
Cooper: I read that book and I’ve talked to her.
Regina: Wow! So you know, she wrote that she was
extremely cognizant of the whole experience, even
though her language center wasn’t able to recall language. She still knew what was going on. And the fact
that she was using herself as a case study is the best
part. Pretty amazing.
Cooper: Yes. Kirk Douglas wrote a book, called My
Stroke of Luck, about how he looked at life and therapy
after his stroke. He said that at age 83, he finally realized life was about helping others, about giving back.
Regina: That’s the way to be. Just last year, I started
volunteering at a convalescent home in Sherman Oaks,
twice a week. A lot of those patients, the seniors, had
had strokes. I guess I had just assumed that these people
wouldn’t or couldn’t understand me. But I would go
through trivia and current events with them. Some of the
people would answer my questions even when I wasn’t
sure they’d be able to talk at all. And I’d realize, “ Oh,
my gosh, they hear! They’re totally cognizant.” It’s
amazing how the brain works to survive and recreate.
Ruby: My therapy and my diet have really been helping,
in my case. My daughter has me on a very strict diet.
Today was the first day I had coffee. She’s got me on a
lot of carrot juice. It doesn’t have the best taste, but I
swallow it.
Regina: When my mom was diagnosed, I didn’t know
much about the condition. But Dana Delaney, who is an
actress and now a friend of mine, put me in touch with
Bob Saget. Bob had made a television movie about scleroderma years ago because his sister had died from it.
That was back when they didn’t even know what it was.
Anyway, Bob had a group called the Scleroderma
Research Foundation, so I donated to that and my mother even went to the doctor Bob had suggested, who happened to be over at Johns Hopkins. He’s been great.
Cooper: How long have you been connected with Bob?
Regina: Oh, I met Bob about six years ago. He actually
called me once I’d spoken to Dana. He called me about
my mother, and ever since then he’s kept me abreast of
everything going on with the Scleroderma Research
Foundation.
Cooper: Do you do any work with them?
Regina: Sure. Every year, they have a big fundraiser,
and the biggest thing for them is raising awareness of
the disease. A lot of people have still not heard of
scleroderma. So it’s really all about raising the money
ABILITY 47
(l to r): Chris Rock, Regina Hall
and Martin Lawrence
starring in Death at a Funeral
to continue research. As of now, there is no cure, so all
any of us can do is find ways to treat it and slow its
progression. Doctors don’t know what causes it, so
they’re still trying to figure out whether it’s something
external or genetic.
Truthfully, most people only hear about the kind of scleroderma that hardens your organs or turns your skin to
stone until you just die. You know who else had it?
Jason Alexander from Seinfeld—his sister had it. Her
esophagus eroded or hardened. I believe she has passed
away. So when my mother was diagnosed, it just sounded like a death sentence. But there are treatments that
make it better. It doesn’t have to be a death sentence.
“scary.” And you are in all of these Scary Movie films.
It seems like most of the roles you’ve done that I know
about have been comedies. How did you get involved in
that?
Regina: You know, it just happened. I have done some
dramatic works, but I guess the bigger movies have
been comedies. I don’t necessarily think of them as
comedies or dramas, specifically. I guess I just look at
the tone of the script, the character, and just kind of go
from there. Once you do a thing in Hollywood that
becomes popular, people want to see you do that more
and more. So it kind of creates itself, I think.
Cooper: And Jamie Kennedy—?
Ruby: It was scary, though.
Regina: Yeah, and the thing is, I think the biggest hurdle
in the beginning was that she was really not herself. Her
energy was completely gone, she was really tired,
always sleeping. Now she’s up all day. I can’t stop her!
She’s running upstairs now! (laughter) Her energy is
really coming back. She’s showing off. I have to make
sure she’s not hanging out at the club or roller skating!
Cooper: You mention your mother’s diagnosis being
48
ABILITY
Regina: We slept together several times. No. (laughter)
I did not know Jamie before. I met him at the audition. I
met him as B-Rad at the screen test. He was very nice.
Cooper: I slept with him too. He was playingB-rad?
Regina: (laughs) Yeah, because we had to do an actual
screen test. He was in character. And I liked him a lot.
He’s still a good friend. He’s a nice guy. I used to watch
his show all the time, the disguises—he fooled me all
Hall, in a Scary Movie.
the time. I loved the B-Rad character on the show,
which is why I guess it became a movie.
Cooper: And now you’re in a pretty big film called
Death at a Funeral?
lot of joy that I come and spend time with them. There’s
an all-purpose room where we all do games and trivia.
They’re pretty great. They love it when I bring my dog
in, too.
Cooper: Does the senior center need you to have a registered therapy dog?
Regina: Yes. I’m excited.
Cooper: What role do you play? The dead person?
Regina: Um, um— (laughs) No, I’m Chris Rock’s wife.
Cooper: You’re working with a pretty large cast.
Regina: Yeah, it’s a great ensemble, and is a remake of
a very funny British film that Frank Oz directed.
Cooper: And you’re still finding time to do some volunteering in the middle of all of this?
Regina: Yeah, I still work with seniors about two days a
week. I think there should be a lot of respect paid to the
lives they’ve lived and the lessons they’ve learned. I
learn something from them all of the time. One of the
nicest things about volunteer work is that the people I
help don’t know I’m an actress at all. They just have a
Regina: Well, they just have to make sure the dog has
had his shots, which mine has. There’s one woman
who is blind, doesn’t speak any English, loves my
dog. And it’s great for me, too, because it means I
don’t have to give him so much attention when I come
home. (laughs)
Cooper: Do you do any other kinds of volunteering?
Regina: I mostly work with seniors, but two weeks ago
I helped with The Make-a-Wish Foundation, which is
all for kids. I was in a booth where the kids come up
and throw a ball and knock down little characters. It
was fun.
For more information on scleroderma, see page 50
(l to r): Ruby Hall, daughter Regina and
Chet Cooper.
Chet shows off his ABILITY neck tattoo.
scrfcure.org
scleroderma.org
ABILITY 49
A
chronic autoimmune disease, scleroderma is characterized by fibrosis (or hardening), vascular alterations, and autoantibodies. There are two major forms of
the condition: Limited cutaneous scleroderma (or morphea) and Diffuse cutaneous scleroderma. Limited cutaneous scleroderma mainly affects the hands, arms and
face, although pulmonary hypertension is a frequent characteristic. Diffuse cutaneous scleroderma (or systemic
sclerosis) is a rapidly progressing form and affects a large
area of the skin, as well as one or more internal organs—
frequently the kidneys, esophagus, heart and lungs. Diffuse cutaneous scleroderma can be fatal. There are no
treatments for scleroderma itself, but individual organ
system complications are treated.
Prognosis is good for limited cutaneous scleroderma.
Prognosis is worse for diffuse cutaneous disease, particularly for older patients, and for males. Death
occurs most often from pulmonary, heart and kidney
complications. In cases of diffuse cutaneous disease,
odds of five-year survival are
70%, and odds of ten-year survival are 55%.
Causes are unknown. Scleroderma runs in families, though
genes have not specifically
been identified. It affects the
small blood vessels, known as
arterioles, in all organs. First,
the disease kills the endothelial
cells of the arteriole, along with
smooth muscle cells, by a
process of apoptosis. Those
cells are replaced by collagen
and other fibrous material.
Inflammatory cells, particularly
CD4+ helper T cells, infiltrate
the arteriole, and cause further
damage. Many of the inflammatory and destructive protein
signals have been identified, and are potential targets
for drugs that could interrupt the process.
DIAGNOSIS
Typical scleroderma is classically defined as symmetrical
skin thickening, with about 90% of cases also presenting
Raynaud’s phenomenon, nail-fold capillary changes, and
anti-nuclear antibodies. Patients may or may not experience systemic organ involvement. Atypical scleroderma
may show any variation of these changes without skin
changes or with finger swelling only. Additional symptoms of scleroderma typically present themselves within
two years of Raynaud’s phenomenon.
Laboratory testing can show anti-topoisomerase antibodies (causing a diffuse systemic form), or anti-centromere
antibodies (causing a limited systemic form, and the
CREST syndrome). Other autoantibodies can be seen,
such as anti-U3 or anti-RNA polymerase.
SEVERE COMPLICATIONS
• Heart — Untreated high blood pressure strains the
heart; irregular heart rhythm and enlargement of heart
lead to organ failure.
• Kidney — Blood vessel damage causes blood pressure
to rise, which untreated, will result in brain swelling,
headaches, retinal damage and seizures.
• Lung — Two-thirds of all patients suffer from respiratory problems such as shortness of breath, coughing,
difficulty breathing, alveolitis (inflammation of lung air
sacs), pneumonia and cancer.
• Digestive — Esophagus damage can make it difficult
to swallow food, and acid reflux is common. A sluggish
intestine may cause pain & bloating; undigested food
can result in diarrhea, weight loss and anemia.
• Skin & Joints — Carpal tunnel syndrome is common,
as is muscle weakness, joint pain & stiffness.
TREATMENT
There is no direct cure for scleroderma. Because the
exact cause is unknown, any treatment is patient-specific and aimed at ameliorating symptoms of the disease.
For example, patients who experience Raynaud’s phenomenon may be treated with agents to increase blood
flow to the fingers, including nifedipine, amlodipine,
diltiazem, felodipine, or nicardipine.
Scleroderma is characterized by the appearance of circumscribed or diffuse, hard, smooth, ivory-colored
areas that are immobile, and which give the appearance of hidebound skin. The condition occurs in both
localized and systemic forms:
Because scleroderma is an autoimmune disease, one of the
major pillars of treatment involves the use of immunosuppressive agents. These drugs include methotrexate,
cyclophosphamide, azathioprine, and mycophenolate.
INCIDENCE
Individuals with morphea or limited scleroderma have a
relatively positive prognosis. They will usually succumb
to another disease, rather than to scleroderma. Those
with very widespread skin and organ involvement (systemic) have a negative prognosis. More women have
scleroderma, but the disease kills more men. Following
diagnosis, two-thirds of patients live at least 11 years.
The higher the patient’s age at diagnosis, the more likely
they are to die from the disease.
by Thomas Chappell, MD
Scleroderma is found among all races worldwide, but
women are four times more likely to develop it than men.
In the United States, approximately one person in 1,000
is affected. Children rarely suffer the systemic type of the
disease, but localized scleroderma is common. Most
adults are diagnosed between ages 30 and 50. The disease
has high rates among the native American Choctaw tribe
and African-American females.
PROGNOSIS
thomaschappellmd.com
50
ABILITY
F
or nearly twenty years, this publication has championed the emphasis of ability both inside and outside
of the workplace. Now, with the ABILITY Magazine
Best Practices Award, we are pleased to shed light on corporations who share in our core philosophy. This award is
designed to single out and celebrate those business practices that have a high level of commitment to inclusion
and ingenuity, demonstrate positive results in their efforts,
and possess the potential to inspire other organizations. It
is through such practices that an organization becomes a
leader in its market, improves employee morale and
strengthens community relations. This issue, we are proud
to recognize Proctor & Gamble and Microsoft as recipients of the ABILITY Magazine Best Practices Award.
PROCTER & GAMBLE
Through its Cincinnatti-based People
with Disabilities Leadership Network, Procter & Gamble’s (P&G)
spirit of inclusion and involvement
sets an example for businesses large
and small by tackling issues of accommodation and support that are vital to the full success of any business.
P&G’s admirable focus on actively recruiting employees
with disabilities and on identifying and working to meet
the needs of each of its many diverse employees have
been keys to its success as a multinational corporation.
Additionally, as a proud partner of the 2010 US Paralympic Team, P&G defrayed the cost of travel and
accommodations for every mother of an US Paralympic
athlete, allowing some of America’s most gifted and
tenacious competitors to bask in success alongside the
women who raised them for greatness. The effort was
just one element of P&G’s ‘Thank You, Mom’ program,
which also donated one US dollar to Team USA for each
mother thanked at thankyoumom.com.
MICROSOFT
Since its inception in 1975, Microsoft
has established itself as a pioneering
force in computer technology and has
steadily grown to become an integral
part of how productivity is accomplished at homes and businesses across the globe. Perhaps less well-known, however, is Microsoft’s focused
dedication to the integration of accessibility in its product planning, product development, research, and program testing. Microsoft truly recognizes that people with
disabilities, as one of the largest minority groups on the
planet, are a powerful resource in any workspace and are
integral to the success of any corporation. At Microsoft,
programs and products aren’t merely retrofitted to
accommodate people with vision, language, or hearing
impairments, they’re designed with inclusion in mind
from the very beginning.
Accessibility for all of its users and clients remains a
key component of Microsoft’s Trustworthy Computing
initiative, which focuses on integrity and responsibility
in the company’s business practices and product designs.
Microsoft’s groundbreaking, innovative work in the
areas of speech technology, natural language processing,
and adaptive systems and interaction, as well as in a
host of other accommodations, have kept the corporation at the cutting edge of technology while helping
each client realize his maximum potential. With its
unique blend of ingenuity, practicality, and inclusiveness, Microsoft continues to give new meaning to the
term “user-friendly.”
abilitymagazine.com
As the fourth largest company in the United States by
market capitalization, P&G continues to prove that its
most formidable strengths lie in attention to detail and
in creating the best possible environment for its body
of talent.
ABILITY 51
W
hen her guest role on Fox’s Family Guy drew criticism
from former Alaska governor Sarah Palin, actress and
activist Andrea Friedman found herself the focus of some
unexpected publicity. But Friedman’s not about to let one negative
review get her down. At her Santa Monica office, Friedman, along
with her father Hal, sat down with ABILITY’s Chet Cooper to discuss the Family Guy fallout, living with Down’s Syndrome, and the
impact of the “R” word.
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ABILITY
Chet Cooper: This is a great view of Los Angeles you’ve
got. It doesn’t even seem like the city. What kind of work
do you do here?
Andrea Friedman: Yes, we are looking at the Santa
Monica Hills. I work in accounting downstairs. I mostly
send out bills and go around and bring things to
lawyers.
Cooper: And you also work for something called Pathway? At UCLA?
Andrea: Yeah, whenever they need an assistant teacher,
I’m on the board.
thanks to an episode of Family Guy that you did. When
did this all start to become a news item?
Andrea: I think that Family Guy episode came out on
February 14th, on Valentine’s Day. That was the first
time I’d ever done a voiceover. But, you know, I’ve
been out here 34 years and it’s the biggest news I’ve
gotten, I guess.
Cooper: And now you’re right in the middle of some
controversy with Sarah Palin. Do you remember what
your line was in the show that got so much attention?
Andrea: Yeah. It was supposed to be a joke.
Hal Friedman: Pathway has been great. It’s a two-year
residential program for people who could not otherwise go to college. The students are taught how to live
independently, but they also take whatever kinds of
classes they’re capable of managing. There are some
students there who have autism but who have very
high IQs.
Cooper: Do you remember what your character had said?
Andrea: The classes help them lead independent lives.
Andrea: No. But I did an interview with The New York
Times yesterday.
Hal: And it’s just another way for people with challenges to get an education. It’s been quite successful.
It’s so successful now that the students and their parents
have asked for a third year, and maybe it’ll eventually
be a four-year program like most colleges.
Andrea: Whenever they need me, they call me. Right
now we’re doing fundraising for scholarships.
Hal: We know of one young man there who—I think
because he has some type of cerebral palsy—had difficulty tying his shoes, buttoning shirts, and things
like that. He is an Orthodox Jew, and the school gave
him a roommate who is a Muslim from Iran with
autism. The autistic roommate would not let anyone
touch him, hated to be touched. The young man with
cerebral palsy is a very happy, outgoing guy, and
eventually his roommate started to help him with his
shoes and shirts! They became very good friends. The
parents of the Jewish boy called the parents of the
Muslim boy to tell them they appreciated the relationship that had formed. And the parents of the Muslim
boy said to the parents of the Jewish boy, “It’s for us
to thank you, because our son has never been able to
touch anybody, and now he’s getting over that.” It was
pretty amazing.
Cooper: That’s an incredible story. We might have to
look into that one.
Hal: Sometimes I think people stir up differences for
their own purposes. There’s more that makes us the
same than different.
Andrea: I’d said, “My father is an accountant, and my
mother is governor of Alaska.” Sarah Palin said that was
insensitive and cruel, so—
Cooper: Have you tried talking to Governor Sarah Palin?
Cooper: They wanted to see what your take on it was?
Andrea: Right. I mean, it was only a joke, and it would
be nice if she would just—to me it was a joke, to her it
wasn’t.
Cooper: You didn’t expect it to get this kind of feedback?
Andrea: No, not at all. I didn’t realize what was happening. It’s a job.
Cooper: There’s also been a lot of discussion lately about
use of “the R-word.” What are your feelings about that?
Andrea: “Retarded”? That R-word? I don’t really like it
at all. It really affected me in many ways, because I’ve
been teased a lot. I was teased with that in elementary
school, in high school, and I didn’t like it. I was going
to stand up for myself, but I didn’t have the courage. So
I’d say something like, “Leave me alone or my sister
will come after you.” (laughs)
Cooper: (laughs) Well, there’s been a lot of discussion
about that word lately, and about how hurtful it can be.
You’re familiar with what happened with Rahm
Emanuel and Rush Limbaugh?
Andrea: Well, I’m not into that controversy part of it.
I’m not into that.
Cooper: Do you know who Rush Limbaugh is?
Andrea: No. Never heard of him.
Cooper: Andrea, you’ve been in the news a bit lately,
ABILITY 53
Andrea Friedman sharing her views with a radio show
concerning Gov. Sarah Palin and the Family Guy.
Cooper: Have you been able to get in touch with Sarah
Palin at all and share your views?
Andrea: Not really. She never called to find out what I
think, so I can’t really give her any information or my
thoughts. And I’ve never met her before, so I don’t
know what she’s like.
Cooper: I think it would be a good conversation. I
would like to see if we could—
Andrea: I don’t know how she would react when she
sees me. Attack me again?
Cooper: (laughs) I doubt it. I think you guys would
probably get along. I think most people who get into the
political arena tend to speak out on certain things—
Andrea: I’m not in the political arena.
what kind of conversation you might have if you told her
that your work on Family Guy was meant to be a joke,
as you’d said.
Andrea: Yeah, it was a joke. Either way, whatever she
thinks, it’s okay. I’d like to meet her if I had the chance,
and I’d like to meet Trig, too, and hold him.
Cooper: Well, I think anybody would enjoy meeting you.
What other kinds of acting work are you looking to do?
Is there anything in the near future?
Andrea: I don’t know. I always get one show each year,
but that’s about it.
Cooper: Maybe that is about to change. You’re getting
some notoriety again.
Andrea: I’m all over the place now! From The New York
Times to PerezHilton.com to The Insider XD.
Cooper: But she definitely is. That’s my point.
Andrea: If she’s nice, then okay. But sometimes it looks
like she’s using her son Trig as a prop. And that’s not
right. My mom raised me as someone with a normal,
independent life, like most people have, and I’ve been
around and happy for 39 years, going on 40. I feel like
sometimes Sarah Palin wants to get more votes by
bringing her son out. She’s dragging Trig around as
something to be used, and that’s not right to me. It’s
totally not. To me, it’s downright wrong.
Cooper: I would be curious to see what she would say
to you. I know that in respect to use of the “R-word,”
she had called for Rahm Emanuel to lose his job, but
she was okay with Rush Limbaugh using it because she
thought it was satirical. So it’d be interesting to hear
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Cooper: And now to be back in ABILITY Magazine
after all these years! You were on the cover of our second issue. That’s how long ago that was.
Andrea: I still have it at my parents’ house! When this
new one comes out, can I have lots of copies? I’d like to
have one for my grandmother, and I have cousins all
over the place.
Cooper: Sure.
Andrea: Oh, and I forgot to mention that I would also
like to meet President Obama one day.
Cooper: (laughs) If you guys hang out let us know.
ndss.org
ABILITY 55
T
he Equal Employment Opportunity Commission
(EEOC) enforces federal laws prohibiting discrimination in employment. The following are
recent cases brought about from the EEOC.
OLSTEN STAFFING SERVICES TO PAY $75,000 TO
SETTLE EEOC DISABILITY DISCRIMINATION SUIT
Nationwide Temp Agency Refused to Refer Deaf Worker in Wisconsin For Food Production Job Because of
His Disability, Agency Charged
Olsten Staffing Services Corp., a nationwide temporary employment agency, will pay $75,000 to settle a
disability discrimination suit filed by the EEOC.
In its suit, the EEOC charged that Olsten, based in
Melville, NY, violated the Americans with Disabilities
Act (ADA) by refusing to refer a deaf job applicant for
temporary employment as a production worker at Main
Street Ingredients, a La Crosse, Wisconsin food products manufacturer.
The EEOC said that, on two occasions, a staffing specialist at Olsten’s La Crosse office decided not to refer
the applicant to Main Street because he is deaf, despite
his meeting all the actual qualifications for the job.
EEOC Chicago District Director John Rowe, who
managed the federal agency’s pre-suit investigation,
said that emails obtained by the EEOC showed that
Olsten’s staffing specialist had flagged the applicant’s
disability as a “concern.” Rowe said that when the
staffing specialist was later asked by the applicant why
he did not get the job, the specialist falsely attributed
the decision to concerns expressed by Main Street,
when in fact Main Street had not expressed such concerns. Evidence obtained by the EEOC indicated that
hearing ability was not a requirement of the food production job at Main Street; in fact, according to Rowe,
workplace noise required a number of employees there
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to wear ear protection that prevented them from hearing while working.
The ADA requires that temporary employment agencies evaluate job applicants with disabilities on the
basis of their ability to perform, with or without reasonable accommodation, the essential functions of the
jobs for which they are being considered. The ADA
prohibits such agencies from declining to refer a qualified individual because of his disability. Moreover, if
an agency has reason to believe that one of its clients
is discriminating against one of the agency’s temporary employees in any phase of the employment relationship (including hiring and referral), the agency has
an affirmative obligation under the law to take reasonable steps within its control to remedy that discrimination.
“This case is a reminder that employment agencies, no
less than any other employer, have important obligations under the ADA,” said John Hendrickson, the
EEOC regional attorney for the Chicago District,
which includes Wisconsin. “Decisions made by agencies concerning whether to refer a job applicant must
be based on qualifications, period—not on the basis of
a disability.”
The EEOC’s lawsuit was filed on September 29, 2008,
in the US District Court for the Western District of
Wisconsin. The case was resolved by a two-year consent decree which was entered today by US Magistrate
Judge Stephen L. Crocker, who presided over the case.
In addition to requiring Olsten to pay lost wages of
$5,000 and damages of $70,000, the decree contains an
injunction prohibiting Olsten’s La Crosse office from
engaging in any further discrimination on the basis of
disability. The decree also requires that Olsten provide
training to its employees concerning the ADA and
report any further complaints of discrimination to the
EEOC for the next two years.
The government’s litigation effort was led by EEOC
Trial Attorneys Justin Mulaire and Laurie Elkin and
EEOC Supervisory Trial Attorney Gregory Gochanour.
LARGE ARIZONA BOTTLING COMPANY SETTLES
EEOC DISABILITY DISCRIMINATION SUIT
Kalil Unlawfully Fired Employee Because of Diabetes,
Federal Agency Charged
Kalil Bottling Co., a large Arizona soft drink bottling and
distribution company, has agreed to settle a disability discrimination lawsuit filed by the EEOC.
The suit, filed in US District Court for the District of Arizona in Tucson, charged that Kalil violated federal law
when it fired Gerald Nez, who has diabetes. As a merchandiser, Nez was required to drive his own personal
compact pickup truck to complete his duties. The suit further alleged that despite at least four months of flawless
work and an impeccable driving record, Kalil required
that Nez pass a medical exam. When the medical exam
revealed that he had diabetes and was using insulin, Kalil
fired him for that reason alone.
For the last 30 years, Kalil has had a policy requiring all
employees who drive any motor vehicles as part of their
employment, even their own vehicles, to pass a federal
Department of Transportation (DOT) medical exam
designed for people seeking a commercial driver’s license
(CDL) required for trucks over 10,000 pounds. Nez did
not need a CDL to fulfill his job at Kalil, the EEOC
argued.
“The DOT’s exam automatically prohibits people who
use insulin from obtaining CDLs,” said Mary Jo O’Neill,
the EEOC’s regional attorney in Phoenix. “That may be
perfectly fine when the job requires a CDL, but Nez
never needed a CDL to drive his own pickup for Kalil.
Under the ADA, this policy is an unlawful qualification
standard that tends to screen out individuals with disabilities, including people with diabetes.”
Firing an employee because of a disability violates Title I
of the ADA, which prohibits employers from discriminating against qualified individuals with disabilities in
employment. Under the law, employers may not try to get
around the prohibitions against disability discrimination
by relying on irrelevant qualification standards that
screen out people with diabetes or any other disability.
Nez has since passed away. Pursuant to the consent
decree settling the suit, the company will pay $33,000 to
Nez’s widow, conduct anti-discrimination training, and
eliminate its policy of automatically excluding insulinusing people with diabetes from jobs involving operating
motor vehicles.
“The key problem in this case is that insulin-requiring
diabetes was an automatic exclusion from employment at
Kalil,” said O’Neill. “The company failed to do an indi-
vidualized assessment of Mr. Nez to see if, in fact, his
diabetic condition made him a safety hazard. Millions of
Americans use insulin and millions drive in their own
cars and are perfectly safe drivers.”
“While Kalil initially may have had good intentions to
ensure greater driver safety, it used a shotgun approach
that excluded perfectly qualified people with disabilities
from employment —people like Mr. Nez,” said EEOC
Trial Attorney Diana Chen. “At the time Kalil fired him,
it had absolutely no evidence that his diabetes posed any
risk on the road. Companies must be mindful that policies they put in place don’t violate anti-discrimination
laws.”
EEOC Acting District Director Julie Bowman added,
“We are pleased that Kalil decided to change its policy.
This outcome is a win-win. Kalil now has access to a
larger pool of qualified applicants and people with disabilities have more opportunities in the job market.”
Headquartered in Tucson, Ariz., Kalil supplies popular
soft drinks like Snapple, Gatorade and Monster Energy to
consumers in Arizona, New Mexico, Colorado and
Texas.
VALLEY ISLE MOTORS TO PAY $32,500 FOR REFUSING
TO HIRE PERSON WITH PERCEIVED DISABILITY
Car Dealership Dropped Job Offer After Drug Test
Results Revealed Use of Prescription Meds
The EEOC announced the settlement of a lawsuit filed
against Valley Isle Motors Ltd, a Maui-based car dealership, resulting in a $32,500 payment to a job applicant and other relief to remedy alleged disability discrimination.
In its lawsuit, the EEOC asserted that the car dealership
reneged on an offer to hire a job applicant as a salesperson only after a urine test revealed he was taking prescribed medication. Valley Isle Motors then erroneously perceived the applicant as too disabled to do the job
despite normal medical test results and medical authorization to the contrary, the EEOC said.
The EEOC argued that the conduct was in direct violation of the ADA. The EEOC originally filed the lawsuit
in February 2009 on the applicant’s behalf after first
attempting to reach a pre-litigation settlement.
The parties entered into a three-year consent decree,
approved yesterday by the US District Court of Hawaii.
The consent decree requires that Valley Isle Motors
implement an internal policy, procedures and staff
training to safeguard against disability discrimination.
The car dealership must also submit annual reports to
the EEOC to track future complaints of disability bias
and requests for disability-related accommodations during the hiring process.
ABILITY 57
“Employers cannot make assumptions about a prospective employee’s ability to work,” said Anna Y. Park,
regional attorney for the EEOC’s Los Angeles District
Office. “The ADA expressly prohibits that stereotypes
of this nature weigh into the decision to hire or deny
hire to an individual.”
Timothy Riera, director of the EEOC’s Honolulu Local
Office, added, “Employers should heed the lesson
learned by Valley Isle Motors and be mindful to judge a
candidate by his or her qualifications, not by some illinformed presumption. Communication with prospective employees is the key in determining whether one’s
actual or perceived condition will interfere with work.
Businesses should take advantage of appropriate training opportunities that are available to learn how to
appropriately engage in that interactive process.”
The EEOC St. Louis District Office is responsible for
processing charges of discrimination, administrative
enforcement and the conduct of agency litigation in
Kansas, Missouri, Nebraska, Oklahoma and southern
Illinois, with area offices in Kansas City and Oklahoma
City.
ST. LOUIS CONSTRUCTION COMPANY SETTLES
DISABILITY DISCRIMINATION SUIT WITH EEOC
$50,000 CONSENT DECREE RESOLVES EEOC
DISABILITY DISCRIMINATION LAWSUIT AGAINST
DIRECT WINES
A&A Contracting Fired Worker Because of Health
History
Beverage Distributor Unlawfully Fired Employees Who
Needed Medical Leave
A&A Contracting, a St. Louis construction company,
has agreed to settle a disability discrimination lawsuit
filed by the EEOC. The suit, which was filed last fall,
charged that the company violated federal law by firing
one of its permanent construction workers because it
regarded him as disabled due to his history of liver and
kidney problems, including cancer.
Federal District Judge John W. Darrah has signed a
consent decree under which Direct Wines, Inc., formerly known as Beverage Solutions, Inc., a Lake Forest, IL
beverage distribution company, will pay $50,000 to end
a disability discrimination lawsuit filed by the EEOC.
Title I of the ADA prohibits employers from discriminating against employees and applicants who are disabled, have a record of disability, or who are regarded
as disabled. At the time of his termination, the EEOC
said, Rick Wells was in good health and had been
cleared to work by his doctor, but A&A Contracting
became aware of his health history when he applied for
the company’s health insurance coverage.
The settlement agreement, which was filed in the US
District Court for the Eastern District of Missouri, provides for payment of $17,000 in lost wages and compensatory damages to Mr. Wells, implementation of a
comprehensive anti-discrimination policy, training of
all management employees, and designation of a
human resources professional to consult and participate
in HR-related matters.
“While it was important to the EEOC that Mr. Wells be
compensated for his lost wages and for the humiliation
of being fired for a perceived disability, we are equally
pleased that this settlement means that another St.
Louis employer will be taking important steps to prevent any similar problems in the future,” said Barbara
A. Seely, Regional Attorney of the EEOC’s St. Louis
District Office.
James R. Neely, District Director of the EEOC’s St.
58
Louis District Office, said, “Even small employers need
to keep themselves educated and informed of the law’s
requirements. At the time Mr. Wells was fired, A&A
Contracting had approximately 20-25 employees. Any
business with that size work force needs to make sure
that it has clear, effective anti-discrimination policies
and that it provides thorough, comprehensive anti-discrimination training to its managers and employees on
a regular basis.”
ABILITY
Direct Wines operates home delivery membership clubs
such as Beer Across America and International Wine
Club.
The EEOC charged in the suit that the company violated the ADA by failing to accommodate Pamela
Stokes and a class of employees with disabilities by
terminating their employment because they needed
medical leave. The ADA prohibits employment discrimination against people with disabilities and
requires that employers provide reasonable accommodations to employees, including leaves of absence,
unless doing so would cause an undue hardship to the
employer.
According to EEOC Chicago District Director John
Rowe, who supervised the federal agency’s administrative investigation of the matter, Beverage Solutions
had a policy that provided that employees could only
take leave between February 15 and May 15 or
between July 15 and October 15, when Beverage
Solutions claimed its business was slower. When
Stokes requested six to eight weeks of medical leave
beginning on September 20, 2006 so that she could
have heart surgery, Rowe said, Beverage Solutions
denied her leave request and told her that by taking
leave she would be effectively resigning. Stokes
underwent surgery and was released to return to work
on November 20, 2006. She then contacted Beverage
Solutions about coming back, but was refused.
The EEOC filed the lawsuit on June 25, 2009, in the
US District Court for the Northern District of Illinois,
Eastern Division. The case was assigned to Judge Darrah. The judge signed the consent decree February 26,
2010, and it was received by the EEOC.
Akeena Solar, a Los Gatos California-based solar
power company will pay $30,000 to a payroll and
accounts technician and will implement preventative
measures to settle a federal disability discrimination
lawsuit.
Under the terms of the consent decree, Direct Wines
will pay $50,000 to Stokes and one other employee
who was terminated for needing medical leave. The
decree also requires that Direct Wines adopt and distribute a policy against disability discrimination and
revise its leave policies to provide reasonable accommodations to employees with disabilities. In addition,
the two-year decree enjoins Direct Wines from engaging in further disability discrimination or retaliation,
requires that it provide annual training to its employees
regarding disability discrimination and mandates that it
submit periodic reports to the EEOC regarding any
such complaints.
This resolved the EEOC’s suit alleging that Gladys
Tellez, a 44-year-old Latina hired to be a payroll and
accounts technician on November 13, 2006, was fired
by Akeena Solar within hours of her first day at
work, after her supervisor discovered that her left arm
was paralyzed. The EEOC’s investigation determined
that Tellez was fully qualified and capable of performing the essential functions of the position despite
her disability.
“We’re pleased that Direct Wines agreed to resolve this
lawsuit without protracted litigation,” said John Hendrickson, the EEOC’s regional attorney in Chicago.
“Early resolutions like this one have real down-to-earth
benefits. Employers aren’t spending money that could
be used to grow business on suiting up lawyers to do
battle. Victims of discrimination are more quickly made
whole and can move on with careers. Current and
future workers are—immediately and for the long
term—assured their rights under federal law will be
protected and respected. From our perspective at the
EEOC, these are all entries on the positive side of the
ledger, not only for all the parties, but for the taxpayers
as well.”
EEOC trial attorney Ann Henry and Supervisory Trial
Attorney Diane Smason were responsible for the conduct of the litigation. “This case should remind
employers that inflexible leave policies may spell trouble under the ADA,” Henry said. “Even if an employee
with a disability may not be eligible for leave under the
Family Medical Leave Act, the ADA still may compel
an exception to a leave policy as a reasonable accommodation. So, as with any other reasonable accommodation issue, this is not an area for knee-jerk decision
making.”
The EEOC Chicago District Office is responsible for
processing charges of discrimination, administrative
enforcement, and the conduct of agency litigation in
Illinois, Wisconsin, Minnesota, Iowa, and North and
South Dakota, with area offices in Milwaukee and Minneapolis.
AKEENA SOLAR SETTLES DISABILITY
DISCRIMINATION SUIT
EEOC Obtains $30,000 for Woman With Paralyzed
Arm Fired Within Hours of Starting Work
Title I of the ADA prohibits employment discrimination against people with disabilities in the private
sector and state and local governments. After a neutral investigation conducted by EEOC Investigator
Juan Vaca and first attempting to reach a voluntary
settlement through conciliation, the EEOC filed the
suit in US District Court for the Northern District of
California.
Under the terms of the consent decree, Akeena Solar
will pay Tellez $30,000 in damages, post a notice in the
workplace concerning the company’s commitment to
complying with the ADA, institute annual training on
preventing disability discrimination to staff involved in
hiring and recruitment, and report to the EEOC any disability discrimination complaints that arise for the next
three years.
“All too frequently the mainstream public, including
employers, perceives people with disabilities through a
filter of myths and stereotypes, instead of assessing
each person on his or her own terms,” said EEOC
Regional Attorney William Tamayo. “In Ms. Tellez’s
case, she was not even given a full day to prove herself.
We hope this resolution will encourage employers to
give persons with disabilities a fair shot at establishing
their individual worth and value at work.”
“A truly green business will make the most of human
resources as well as energy sources,” said EEOC San
Francisco District Director Michael Baldonado. “This
settlement benefits Akeena Solar’s workforce by ensuring that management is educated to recognize and prevent disability bias.”
According to its website, akeena.net, Akeena Solar is
one of the leading designers and integrators of solar
power photovoltaic systems for residential and commercial customers in California, New York, New Jersey
and Connecticut.
eeoc.gov
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1. This Department of Transportation has finally settled a
lawsuit over access to sidewalks by people with disabilities
5. "I Know a Woman Like that" author (mother and daughter) last name
10. Author of "A Country Called Amreeka" ____ Malek
12. Lifted weights (2 words)
14. Was first in a race
15. Vie for office
16. Memo start
17. Oscar winning actress who has supported Breast Cancer Care, Nicole ____
18. "Big Toe's" front man, Mark ___, who was born with
no arms
21. Riches
22. Symbol whose value is very overrated
23. Persona ___ grata
26. One of the top female wheelchair racers in the world (2
words)
29. What?
31. ___athlon
32. TV show where RJ Mitte stars playing a boy with cerebral palsy (2 words)
37. "What's up __"
38. ___ Leppard (band)
40. Concord locale
41. This Public Safety Communications Center has
become the first in the nation to successfully receive text
messages sent directly to 9-1-1
46. Being replaced by the DVD
48. Gambling mecca, for short
49. Bachelor's last words!
50. Stan who created Spider-Man
51. Scott McNeice and David Bailey were top disabled
performers in this challenging sport
1. He has been appointed the Special Raporteur on Disability of the Commission for Social development,
Shuaib ____
2. Rested (2 words)
3. Tourer
4. Person, place or thing
6. Assistance
7. Powerful characteristics
8. 1980's White House name
9. Super Mario Bros. enemy
11. "Fantasy Island" prop
12. Bad joke
13. Huffiness
15. Took a chance (3 words)
19. Belong (2 words)
20. Reach, a goal for example
24. ___ the rainbow
25. Take hold of
27. Ali blow, for short
28. First female US Paralympian to claim gold in the
summer and winter Games, Alana ____
30. Comic character: __ man
31. Matter of contention
32. Global thriller, starring Brad Pitt
33. Network
34. Sort of:, suffix
35. Business promotion
36. The ____'s in the details
39. Well known dog
42. Does it make you more and more invisible?
43. Frontiersman, Carson
44. Ryan's "Love Story" co-star
45. Charleston state
47. Syndicate head
answers on page 62
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