Quincy Jones - ABILITY Magazine

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THE VOICE OF OVER 50 MILLION AMERICANS
0
OCT/NOV
$4.99 QUINCY JONES OCT/NOV 2011
QUINCY JONES
10
VOLUME 2011
$4.99 ISSUE 10-11
MAGAZINE
2
ABILITY
ABILITY 3
M ANAGING E DITOR
Gillian Friedman, MD
M ANAGING H EALTH E DITOR
E. Thomas Chappell, MD
E DITORIAL D EVELOPMENT D IR .
Pamela K. Johnson
C ONTRIBUTING S ENATOR
U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois
George Covington, JD
Gene Feldman, JD
E DITORS
HUMOR THERAPY — Coupons Are For Suckers
8
ASHLEY FIOLEK — 2011 Women’s Motocross Champ!
10
SEN. TOM HARKIN — Working For More Jobs
12
CINDERELLA — A New Spin on an Old Tale
STILL SWINGING — An Inside Look at Adaptive Golf
18
SUSANNE BRUYÈRE, PHD — Creating Possibilities at Cornell
22
VIRGINIA JACKO, CEO — Blind Visionary
26
MEET THE BIZ — Actors Training Actors
30
PAWS/LA — The Sick and Elderly’s ‘Best Friend’
32
QUINCY JONES — Renaissance Man and More
44
GLOBAL DOWN SYNDROME — Things Are Looking Up
52
WORKOUT DVD — First You Get Off The Couch...
54
THE OLD GUARD — A Change is Gonna Come
56
OCD — From Pain to Published Author
60
ABILITY CROSSWORD PUZZLE
64
EVENTS & CONFERENCES
Music Within
14
Paralympic Games Beijing
6
H EALTH E DITORS
Moses deGraft-Johnson, MD
Larry Goldstein, MD
C ONTRIBUTING W RITERS
Zimmerman p. 26
Quincy Jones p. 32
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The views expressed in this issue may
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© Copyright 2011 ABILITY Magazine
hour looking for the scissors, and then you spend another hour cutting out the coupon, because it’s in the middle of the page. You’ve got your coupon and you’re in
hog heaven because you’re going to save, like, four
bucks. You’re good to go. Life couldn’t be better. Then
you go to use your coupon, and that’s when they blindside you with the bullcrap. It generally goes like this:
Snotty Waitress: Yeah, I’m sorry but that coupon’s not
good on Tuesday.
You: Yeah, but it’s Wednesday.
Snotty Waitress: Oh yeah, you’re right. It is Wednesday.
I could’ve sworn it was Tuesday. Anyway, that coupon’s
not good Wednesdays either. It’s only good on Mondays,
Fridays and Veteran’s Day.
used to say, “A penny for your thoughts.” Not
anymore, though, because I need that money. In fact,
I’ve been pinching my pennies so hard that Lincoln’s
nose oozes liquid copper. Forget putting in my two
cents. Every day I hope my car will stop on a dime so I
can pick it up. Money is the root of all happiness. When
you don’t have it, you feel as low as the stock market.
I’m trying to save where I can. I don’t buy stamps anymore. When I want to mail something, I put the address
of the person or the company I’m sending it to up in the
left hand corner of the envelope. Then I just write a fake
address where you’d usually put the addressee’s info.
Then, and this is the key, I don’t put a stamp on the envelope. When it rolls into the post office, the postal workers
see the envelope has no stamp, figure I’m trying to pull a
fast one, and send it to the return address. Booya! My
delivery gets to its destination, free of charge. Believe
me, I’m not as dumb as my brother looks.
Speaking of my brother, I recently had to borrow
$2,000 from him, and now the S.O.B. wants his money
back. I didn’t realize paying him back was part of the
deal. Anyway, I finally got fed up with him badgering
me for money, and wrote him a check for two grand.
On the back of it, I wrote, “Give me all your money. I
have a gun,” so when he went to deposit it at the bank,
well, let’s just say I now have five years to pay him
back—unless he gets out for good behavior.
Over the last year, I’ve started clipping coupons, but
they’re tricky because of all the stipulations. As a result,
I’ve developed a new disorder called “coupon rage.”
Tell me if this doesn’t happen to you: You stumble
across a great coupon for a restaurant offering a buyone-entrée/get-one-free deal. Damn, it looks so good.
You get excited. You perk up like a prairie dog. Your tail
starts to wag. Next thing you know, you’re spending an
6
ABILITY
So you’re angry and your feathers are ruffled, but you
can handle the let-down. Slightly embarrassed, you buy
a meal for you and your friend and vow to use the
coupon soon. Friday comes and you return to the restaurant with your friend, looking to get that extra meal for
the price of one. The same waitress is there to take your
order. You beam as you hand her your faded coupon.
Snotty Waitress: You again. Yeah that coupon’s not valid
now. It’s only good between the hours of one and one-thirty.
You: That’s not even an hour. It’s, like, half an hour.
Snotty Waitress: Yeah, sorry. I don’t make the rules.
Another coupon let-down. They got you again. Your
feathers are now extremely ruffled. You’re pissed. You
buy another meal for you and your friend. This coupon
is not helping you save money, but you’re determined to
use the freakin’ thing. You go back the next Friday with
your friend at exactly 1:15 p.m., and order the most
expensive thing on the menu, hoping to offset the injustice. You finish your meal and, with all the confidence
of a wedding singer, hand the waitress your coupon.
Snotty Waitress: Wow. Yeah, you can’t use this.
You: What the—
Snotty Waitress: It’s expired. Sorry.
Later that night, you’re arrested for burning down a
Denny’s. When all is said and done, you’ve spent more
money than you would have if you had never run across
the stinking coupon in the first place.
After many, many coupon let-downs, one would think
I’d learned my lesson. Such is not the case. Maybe I’m
just a hopeless dreamer. An eternal optimist. A coupon
fancier. Or maybe I’m just a cheap bastard. However, I
don’t think anyone would ever call me that. Not to my
face, anyway.
Most likely, I will continue to pursue
these elusive money-saving rituals. Next
weekend, some seductive coupon will
jump off the page and tease me. I’ll read
and re-read the tiny, fine print with my
magnifying glass, I’ll Google coupon
scams, and then I’ll run the coupon by
my lawyer for sneaky loopholes. But, in
the end, somehow, I’m going to get
coupon screwed and screwed hard. That’s
just the dirty world of coupons.
Hear me, and hear me well. These alluring, captivating coupons are the devil’s
toys. They even screw me over at the grocery store. I spend all week looking for
some knock-down coupon deals. I debate
for hours whether I really need the items
on the coupons. I eventually convince
myself that I do need them, or that I will at
some point in life. (I still have some of
Tony Danza’s Grease Mousse from the
’70’s, which I got for 75 cents off.) Again,
I clip my coupons, stuff them into my
leather holder, and head off to the store for
big savings.
Snotty Cashier: Yeah, you can’t use that
coupon for those type of crackers. You
need to get the plain, unsalted, salmongrain-flavored ones.
Me: Okay, where are they?
Snotty Cashier: We don’t carry ’em anymore.
Me: Yeah, but I have a coupon.
Snotty Cashier: Good for you. Look,
you’re holding up the line.
Me: Is the manager here?
Snotty Cashier: No, he’s at his AA
meeting. Why don’t you step aside and
stuff that crumbled cracker coupon up
your butt, you cheap bastard.
So I’m left standing outside, in the parking lot, wondering what just happened. I
mumble incoherently, cursing coupons.
People walk by, mistake me for a bum
and hand me spare change. But I don’t
bat an eye, because if someone’s willing
to pay me pennies for my thoughts, I’ll
take them!
“Ham on
a Roll”
by Jeff Charlebois
ABILITY 7
start racing in May and by the middle of September
I’m finished. So now that the season has recently
ended, I’m in time-off mode!
I had some ups and downs this year. One of the downs
occurred during the X Games in August. Though I spent
most of July training for them, I had a bad crash in practice, and was knocked out for over 10 seconds.
The administrators of the games have a rule that if you
are knocked out for more than 10 seconds, they won’t
let you race. I was so upset that I was down in the infirmary, trying to convince doctors and my team manager
that I really hadn’t been knocked out. But they didn’t go
for that one!
I finally had to accept that I couldn’t race, and went to
the games anyway to cheer on the other women competitors. It was so hard to sit in the stands, just watching.
There I was: no crutches, nothing in a cast, no arm in a
sling, just sitting there. It didn’t seem fair.
The racing was good, though, and the girls put on a
great show. My fellow WMX racer, Vicki Golden, won
the gold medal, and needless to say she was extremely
happy! I can’t wait to come back next year to try for
another gold myself.
In terms of my ups, my WMX (women's motocross)
season went well. I had won two championships in 2008
and 2009, only to lose in 2010. I had been depressed
about it, and all I wanted this year was to win the championship back!
A winning season requires a solid foundation: I worked
with Redbull this year and changed my whole off-thebike training program. Bored with my standard exercise
routine, I tried CrossFit, a core strength-and-conditioning
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program, which really improved my training. That exercise program always varies, so every day I look forward
to working out. I also started riding a lot more, which
definitely helps.
My efforts paid off. In my most recent race—the last of
the season—I was 22 points ahead in the series at the
last round. I was happy to have that big of a lead, but
with motocross you never know what will happen! Fortunately, American Honda puts me out on the track in
the best equipment.
So I went out in my first moto and got second place.
During that event, I was just trying to be safe and stay
ahead in the points. In the second moto, however, I was
nervous, and didn’t want to make any mistakes. Besides,
I just wanted the long season to be over! I got third
place in that event,which meant coming in third overall
in the last race.
Fortunately, races are not just measured by wins alone,
but also by points. And my combined-point total was
still 14 points ahead of the next competitor, enough for
the championship win. I was thrilled!
The long season paid off, and I will once again get to
race with the number-one plate! It’s been a long and
exciting year, and after some time off for r and r, I look
forward to coming back strong next year.
ashleyfiolek.com
ABILITY 9
That means that in the last three
years, people with disabilities
have been leaving the labor force
at a rate more than 10 times the
rate of the population that is not
disabled. This is unacceptable
and we need to take action to
change this trend.
JOB, JOBS, AND DID I MENTION, JOBS?
Dear ABILITY readers,
Since the beginning of the recession, I have heard
impassioned pleas for this Congress to focus our attention on the jobs crisis in America. In September, the
Census Bureau reported that nearly one in six Americans is living in poverty, a number that has increased
each of the last four years. With unemployment stubbornly holding at over 9 percent, and the economy in a
fragile state, President Obama is correct that it is time to
pass a jobs bill that will create employment opportunities for millions of Americans and help our economy get
on track.
That’s why I held the recent US Senate Committee on
Health, Education, Labor, & Pension (HELP) roundtable to draw attention to an often-overlooked piece of
the employment puzzle—the shockingly low laborforce-participation rates of workers with disabilities.
According to the Bureau of Labor Statistics (BLS), as
of August, there were more than 15 million adults with
disabilities in the US between the ages of 16 and 64.
Of this group, less than one third were participating in
the labor force, and more than two thirds were not in
the labor force at all. Although BLS has only been
reporting on disability employment rates in their
monthly updates since 2008, it is worth noting that the
size of the disability labor force has shrunk by over
600,000 people in the three years for which we have
data. That represents a more than 10-percent reduction
in three years. During the same period, the size of the
workforce for people without disabilities shrunk by
less than one percent.
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ABILITY
As we noted in March, when we
held a HELP Committee hearing focused on people with
intellectual disabilities, some of
the biggest barriers to success
in the labor market for people
with significant disabilities can
be low expectations, discriminatory attitudes, and a failure of
imagination. The purpose of
this roundtable was to hear
from a diverse group of experts
about how they would improve
our education, workforce development, and human-service
programs, so that people with the most significant
disabilities who want to work are able to find a
place in the labor market and have a career that
works for them.
Our panelists provided excellent insight into the world
of disability employment. Deb Pumphrey, a constituent of mine from Iowa, and the mother of a 27year-old son with multiple disabilities, told the story
of Tenco Industries, a community-based recycling
program that employs people with significant disabilities, including her son. As her son started his job,
working just a few hours a week, she described how
his behavioral problems declined. He now looks forward to the structure and social interaction that his
work provides him.
Michael Pearson, owner of Union Packing, LLC, a
small business in Yeardon, PA, noted that his employees with disabilities have been an asset to his company because, as he said, he focuses not on what people
can’t do, but on what they can do, which has helped
him access a previously untapped pool of talented
workers.
The panelists agreed that with a little imagination and
an adjustment in the way society views potential workers with disabilities, we can integrate our labor force. If
we provide such workplace accommodations as flexibility, assistance with starting and sustaining a microenterprise, and making job responsibilities tailored to
the capacities and interests of the worker, it will benefit
not only workers with disabilities, but also those without them. Broadening the spectrum of employment
Since 1995
options for people with disabilities will help to ensure
that workers are matched with a job that not only suits
them, but also offers them the pride and independence
they deserve.
Over the last year I have been focusing on how to
improve the disability employment situation with
meetings, hearings and legislation. As the HELP
Committee continues to work on a bipartisan reauthorization of the Workforce Investment Act, we have
sought to make changes in the Vocational Rehabilitation title of that bill that would strengthen its emphasis on competitive, integrated employment, as well as
to prioritize services for young people with disabilities as they enter the workforce. I hope the hearings
and roundtables we’ve held will spur new thinking
that can inform legislative efforts like the President’s
jobs bill and other bills. My goal is to make the policy
changes necessary and engage with leaders in the
business and disability communities so that the size of
the disability workforce will grow from 4.9 million to
6 million by 2015. That goal is shared by the U.S.
Chamber of Commerce, providing us with a powerful
ally in the fight to increase employment for people
with disabilities.
Sincerely,
Senator Tom Harkin
Senator Tom Harkin (D-IA) is Chairman of the
Senate Health, Education, Labor and Pensions Committee
harkin.senate.gov
ABILITY 11
Editor’s note: In this twist on a beloved fairy tale, taken from an inspiring new book, Cinderella has a new set of
challenges, and—ultimately—arrives at a different happily-ever-after. At tihs point in the story, the stepmother and
stepsisters are about to leave for the ball...
inally, the big day arrives. Stepmother hires
makeup masters and hotshot celebrity hairstylists
for her daughters. As usual, Cinderella is ignored.
She relies on her own skills to jazz herself up.
Cinderella wheels out of her storage room quite
pleased with her look.
The jaws of the twins drop. Their stomachs turn with
vomit. “Do you think you’re a wonder of nature now?”
the elder twin taunts.
“You’ll never even walk, let alone dance with the
Prince!” the younger twin states.
Ruthlessly, they claw at the butterfly wings of Cinderella’s costume.
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ABILITY
“Please stop!” Cinderella cries.
Stepmother rushes to the scene. She, too, is taken aback
by Cinderella’s beauty.
“Don’t worry girls,” Stepmother says. “I’ll take care of
the situation.” She runs into Cinderella’s storage room
and returns with a sharp jewelry tool. Stepmother glares
at Cinderella. “As far as I’m concerned, you’re not
going anywhere!”
With that said, she punctures Cinderella’s wheelchair tire.
Stepmother and her daughters laugh, and leave for the
Royal costume party arm-in-arm.
jewelkats.com
ABILITY 13
Tom Houston
ot everyone plays golf quite the same way.
Tiger Woods swings a club differently than
Jack Nicklaus, and Jack Nicklaus’s game is nothing like
Arnold Palmer’s.
Golfers with disabilities add their own twist to the sport:
They use adaptive equipment that allows them to participate on the same courses, while following the same
rules as everyone else.
For Tom Houston, learning how to golf has been life
changing. He was paralyzed in 1980 after a 40-foot fall
from a scaffolding at work.
Shortly afterwards, he became an advocate for disability
rights, even designing a chair that could help an individual stand upright for such common tasks as reaching
into cabinets or shaking hands. Houston then partnered
with a manufacturing company to market the chair to
physical therapists.
At the time, he hadn’t considered playing golf. But his
children encouraged him to use his modified chair to
give the game a try. Navigating a golf course in a chair
was not easy, but he made it work by hitching himself to
other players’ carts and getting pulled along the course.
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ABILITY
On a work-related trip to Puerto Rico, he met professional golfer Chi Chi Rodriguez, and entered a competition in which everyday golfers are paired with professionals. Though initially hesitant to participate—given
that previously he’d only played a few rounds with his
kids—Houston soon found himself golfing alongside
two major pros. He also played a practice round with
Rodriguez, which later led to golfing with the legendary
Palmer.
“I told them that I had just started playing golf,” Houston said of the event’s sponsor, the Miami Project, a
research group aiming to cure paralysis. They told him
that it didn’t matter, and that as a high-achieving paraplegic, he fit right into their field of interest.
“The next thing you know,” Houston said, “I’m paired
up with Arnold Palmer and the people who own Royal
Caribbean Cruise Lines. The next year I’m invited back
to play with Lee Trevino. The year after that I’m paired
with Gary Player, then Simon Hobday, and a host of
other guys. Along the way, I started to get into golf.”
As Houston developed a love of the game, Palmer gave
the blossoming athlete some “green” advice: Put wider
tires on your wheelchair, re-tool the wheels, and reduce
the pounds-per-square-inch footprint
your chair leaves on the course’s delicate grass. Today, the adaptive golfer
treads more lightly in his new and
improved chair, which he uses not
only for sport, but also to enhance his
everyday mobility.
Unlike Houston, Annie Hayes was a
lifelong golfer before becoming paralyzed in a 2006 mountain-biking
accident. But her crash didn’t sideline her for long: By February 2007,
the former triathlete was back to
golfing, and had even purchased her
own SoloRider adaptive golf cart,
which is, as the name indicates,
designed for a single user.
The cart’s seat swivels around,
extends to an upright position, and
allows the golfer to stand upright, be
supported, and swing using both
hands. Hayes can drive the cart onto
tee boxes and greens without damaging the surfaces, and can even store
her vehicle at her home course after
the day is done.
“I don’t know what alternative there
would be,” Hayes said. “There’s no
way I would be able to play in a
wheelchair.”
The golfer once drove the ball 200 yards or more from
the tee, but after her accident her drives were only about
half that far. Today, Hayes has recovered some of that
lost ground, and gets up to 140-170 yards per drive.
She’s found that her accident was a game-changer in
other ways as well:
“At the course where I play, there are probably eight
holes that I can’t reach in regulation. But I’m still competitive with most of the women at the club.”
While Hayes and Houston both benefited from the help
of coaches and professionals in recovering their respective golf games, Bob Wilson charged himself with relearning the sport on his own.
He had played since high school and, during his tour
with the Navy, competed on courses across the world.
Even after he lost his legs in a 1974 accident on the
USS Kitty Hawk supercarrier, he managed to stay in
the sport. And like Hayes, within months of his accident, he was back on the course, reading to give it
another go.
As executive director of the National Amputee Golf
Association (NAGA),Wilson developed First Swing, a
program launched in 1986 to introduce more people
with disabilities to the game.
“There was not too much out there in the way of lessons
being provided to disabled people,” he said. “Back in
1964, people knew that amputees played golf, but no
one had any idea how to teach them. First Swing teaches people who’ve never played before, that they can hit
the ball and learn to love the game.”
Move it Forward (MIF), a recent initiative from the Professional Golfers’ Association (PGA) and the United
States Golf Association (USGA), has helped reduce the
physical strain golfers with disabilities often experience,
by shortening the distance between holes. For Wilson,
it’s an approach that simplifies the golfing experience
without diminishing its appeal.
“You get around faster,” he said. “It’s a shorter game,
and you probably have a little more fun, because you
can get on the greens in regulation.”
Even with these accommodations, golf poses no shortage of challenges for athletes with disabilities.
“In the beginning, nobody wanted me on their golf
course,” Houston said. “They said I couldn’t take anything with wheels within 30 feet of their green.”
ABILITY 15
Annie Hayes could drive the
ball 200 yards before her
accident; now she’s recovering lost ground.
Bob Wilson
He wasn’t intimidated, and offered some push-back:
“You drive a mower up there every day. You just had
500 people walking out there, chewing up the grass with
their spikes. So yes, I’m going on your green.’”
In an attempt to alleviate the concerns of course officials,
Houston also altered his wheelchair to reduce its poundsper-square footprint on the greens. Today he uses a chair
with wider tires and more evenly distributed weight,
which has enabled him to golf in 48 states and on the
Congressional course that hosted this year’s US Open,
Beyond this country, Houston’s played golf in five
Canadian provinces, on nearly every island in the
Caribbean, and across England.
“Along the way, I’ve had thousands of awesome golf
experiences,” he said. “It really is a sport that allows
you to compete and socialize with everyday people. I
play with a group of guys here in New Jersey in the
summertime, and last year I won the club championship.
A guy in a wheelchair won the club championship.
That’s pretty cool.”
The challenges that Houston, Hayes and Wilson have
encountered on the course have not only enhanced their
abilities as athletes, but also as people.
“Every golfer—I don’t care if it’s Phil Mickelson or Joe
Blow Hacker—sees that ball and tries to figure out a
way to get to it and hit it,” said Houston. He finds himself using those same sporting skills when he’s off the
course: figuring out ways to negotiate around the obstacles of life.
Hayes has found that being a golfer has instilled a sense
of independence in her that she once thought she might
never recover.
“I just show up at the course, wheel down to my cart,
hop on and go golfing. I don’t have to ask anybody to
do anything special for me. That’s awesome. And I
don’t have to compete with other people with disabilities. I can compete with anybody on a pretty even playing field. All you have to do is hit the ball.”
16
ABILITY
MEET THE GOLFERS
BOB WILSON first picked up a golf club in high
school, when his best friend introduced him to the game
as an alternative to football, baseball and basketball.
Wilson caught on with ease and began golfing regularly
throughout his time in the Navy.
Wilson’s travels took him all over the world. But after
the accident on the USS Kitty Hawk supercarrier ship,
which claimed his legs, he fell into a funk.
“I went through the pity-party routine,” Wilson said.
“Then I got a hold of a magazine, and read an article
about one of the National Amputee Golf Association
(NAGA) championships. So I pushed myself through
the rehab a little harder and played my first nine holes in
June of that year.”
NAGA, supported by the PGA and USGA, has more
than 2,000 members in the United States, and hosts
national and regional tournaments around the country.
But when Wilson was working with the Veterans
Administration in California, he had a difficult time
finding a West Coast NAGA branch.
“My neighbor worked at one of the local golf courses
and asked why I wasn’t playing in the amputee tournament,” Wilson said. “About a week later I was playing
my first amputee tournament in Sacramento.”
Wilson, who now lives in New Hampshire, is executive
director of NAGA and developed First Swing Golf Clinics in an effort to help teach people with disabilities,
who might think that golf is beyond their reach, or that
their best days are behind them, how to get into the
sport. He still plays the game on his own time.
“It’s all about enjoyment, camaraderie, and competition,” he said. “I’ve played all over the world. Every
course is different and every setting is different. All you
have to do is hit the ball.”
TOM HOUSTON’s kids wanted to spend more time
with their father, and they were eager to nudge him into a lifestyle on par with
the one he enjoyed before his accident.
“They asked if I wanted to go play golf,” Houston said. “I told them, ‘Guys, I can’t
play golf.’ They said: ‘You do everything else, so we don’t know why you can’t play
golf.’”
Houston knew his children were right.
After he fell 40 feet from that scaffolding in 1980, and sustained a spinal-cord
injury, he knew he could no longer continue at his chemical-plant job. Yet accepting
his disability proved to be a struggle.
“I wandered around a couple of years and didn’t do too much,” he said. “When I
became really frustrated with my wheelchair, I got into the wheelchair business. I
wanted to make a small, maneuverable chair that allowed you to do all the things in
life that you have to stand up for: reaching shelves, working, social events.”
When his kids asked him to join them on the golf course, he was busy on Capitol Hill,
pursuing legislation for people with disabilities. With the aid of senators like Tom
Harkin and Ted Kennedy, that debate led to the Americans with Disabilities Act
(ADA) of 1990.
Though Houston was active on the political scene, he had yet to get back into the
swing physically. It was time to join his children on the golf course.
“Golf has been good to me,” Houston said. “I’ve put 20 years into trying to get people interested in playing, while also making it available for them to play.”
ANNIE HAYES remembers sitting in her room at Spaulding Rehabilitation Center,
deep in thought. Though she wanted to get back her family and to her librarian job,
it was golf that engulfed her mind.
Once a triathlete, she was mountain biking in 2006 near her home in New York
when she went over a bridge, crashed onto a log and became paralyzed.
“Before my accident, I loved golf,” Hayes said. “I was devastated that I didn’t think
I was going to be able to play again.”
While she was in the hospital, her longtime golf coach—and Ladies Professional
Golfers’ Association (LPGA) member—Kay McMahon visited with encouraging
news: Hayes could recover her game by using single-rider golf carts with seats that
allow a seated individual to stand and hit a golf ball.
“After that, I got myself a cart,” Hayes said. “I didn’t miss a season. My accident
had been in August of 2006, and by May 2007 I was golfing again.”
Single-rider golf carts don’t come cheap. They typically sell for around $9,000 a
piece. The burden of the expense on individual golfers has sparked ongoing debate
within the golf community about whether courses should be legally mandated to
make available a single-rider, adaptive cart. Although purchasing one would make
a course compliant with ADA regulations, some course managers argue that smaller courses simply can’t afford the expense when demand for the carts is so low.
“I see both sides of the argument,” Hayes said. “These golf carts should be priced
closer to what a regular cart is priced (roughly $5000). At the same time, you still
have to accommodate people with disabilities.”
by Josh Pate
nagagolf.org pga.com usga.org lpga.com
ABILITY 17
Johnson: It sounds as
if many of your students leave the program prepared to
improve the way the
world does business.
Bruyère: Absolutely.
We offer good background courses on
the topic of disability
studies, just to provide cultural context.
We also have courses
on employment and
disability policy,
employment law with
a focus on disability,
and human-resources
practices as they
relate to disability.
We try to make our
courses something
our students can integrate into their work,
when they go out into
the real world.
inding a job in this economy is an uphill climb for
everyone, but it’s especially grueling for people with
disabilities. As associate dean of outreach at Cornell
University’s Industrial and Labor Relations (ILR)
school, and director of Cornell’s Employment and Disability Institute, professor Susanne Bruyère is working
to ease concerns and create opportunities. She spoke
with ABILITY’s Pamela K. Johnson about the challenges
that still lie ahead.
Pamela K. Johnson: What are your duties as director of
the Employment and Disability Institute?
Susanne Bruyère: I have a variety of different functions.
As associate dean of outreach, I have administrative
responsibilities in the ILR school. I’m the principal
investigator on three projects. I design and implement
studies, perform research, and provide oversight and
training. I also teach on campus, where we offer nine
disability-focused courses.
Johnson: What sorts of degrees are awarded to students coming out of the ILR school?
Bruyère: We don’t offer a degree in disability, but we’re
purposely trying to equip students with bachelor’s and
master’s degrees in industrial and labor relationships.
Graduates, more often than not, are going to go on to
become human-resources practitioners and labor-union
leaders. A lot of the students with disability backgrounds go into the legal profession. Law can be a concentration within their degree programs.
18
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Johnson: What classes do you teach?
Bruyère: I’ve taught most of them, including Introduction
to Disability Studies and a course on employment and
disability policy. In the coming year, I’ll be teaching a
course on human resources and disability considerations,
as well as several more policy-oriented courses.
My favorite courses to teach are those that center on
human-resources studies, because they so directly focus
on employer practices. That’s the area where our students
will likely make their greatest contributions.
In addition to my responsibilities as a teacher, I manage a unit of 40 people, as well as 12- to 15-sponsored projects. Our focus, for the most part, is on
disabilities, employer practices and non-discrimination in employment policy. We set the vision and the
agenda on an annual basis—or even on a longer-term
basis—with an eye towards keeping these talented
people, and these projects, in alignment with our
mission.
Johnson: Tell me more about your projects.
Bruyère: They’re focused on the accommodation and
accessibility required by the Americans with Disabilities Act (ADA). Through our Federal 2 regional center—which is New York, New Jersey, Puerto Rico,
and the Virgin Islands—we provide training, technical
assistance and information to entities covered by the
ADA. This includes employers, businesses, disabilities
services and advocacy groups, educational entities, and other state- and
local-government organizations.
Our community inclusion project ensures people with disabilities get the
most integrated experiences available. For instance, if an individual has the
opportunity to live in a community, we make sure that person doesn’t live in
segregated housing. We look at inclusion and focus on giving people the
chance to make their own choices. We call the work that we do “person-centered practices.”
Johnson: What’s the relationship between person-centered practices and the
Employer Assistance and Resource Network?
Bruyère: The Employer Assistance and Resource Network, which we call
EARN, is a website and resource center that offers employers the support
they need to recruit, hire, retain and promote people with disabilities. It falls
under our National Employer Technical Research and Policy Center, which is
funded by the Department of Labor.
Johnson: How do you measure EARN’s effectiveness?
Bruyère: In several ways: We look at the number of products downloaded
from the website, and the number of technical assistance calls we get from
different constituencies. In the months since we redesigned our website,
we’ve made a concerted marketing effort to increase its use. Our Workforce Recruitment Program—through which we find jobs and internships
for young people with disabilities—has also increased traffic to our site.
Johnson: What age group are you referring to when you say “young
people”?
Bruyère: For the most part, I’m talking about people who are of college age.
Our service started out as a way to recruit young people, but there are older
folks in our pool as well.
Johnson: What other job-seeking resources are available to help people in
this population?
Bruyère: The Department of Labor funds the Job Accommodation Network
(JAN), which has been in existence for probably 25 years now. JAN provides technical assistance with accommodation—by telephone and email—
to all kinds of entities, including employers. It’s an excellent resource.
We have 10 Regional Disability and Business Technical Assistance Centers
across the country, each funded for 20 years by the Department of Education’s
National Institute on Disability and Rehabilitation Research and Title I.
People who develop employment policy on behalf of people with disabilities
can get helpful information from Cornell’s online statistical resources.
They’re free and they’re available in both English and Spanish. We also provide an annual disabilities status report, extensive online reports, and informational seminars, at no cost to the public, both nationally and state by state.
Of course, there are also service-provision resources, like the state vocational-rehabilitation agencies. There are more than 80 of them across the country, along with many, many community-service providers that offer help to
job seekers.
Johnson: What are some of the major challenges to employment for people
with disabilities?
ABILITY 19
Bruyère: The pool of jobs in the United States is more
restricted today than it’s been in better economic
times. If employers perceive all other things as being
equal between two candidates, but know they have to
make an accommodation for one of them, they may be
intimidated by that prospect. And if they perceive an
accommodation as being too costly, that can be an
impediment.
A lot of times these misconceptions are based on a lack of
knowledge and information about how to accommodate
people. That’s our biggest barrier, because it doesn’t
really take that much, cost-wise or logistically. We
accommodate people all the time in the workplace.
Employers don’t think about that, and they don’t realize
that they already do it.
Johnson: How are employers being held accountable
for making needed accommodations?
Bruyère: There’s nothing in the law that requires them
to report on how they’ve accommodated anyone. Nor is
there anything in the law that currently requires them to
talk about equitable access to jobs. That may change in
the future. The Office of Federal Contract Compliance
Programs is considering more stringent requirements for
recipients of federal contracts, which would include a
tighter reporting protocol on affirmative action for people with disabilities.
Johnson: Is it left to employers’ consciences, to some
extent, to guide them towards being inclusive?
Bruyère: Title VII of the Civil Rights Act—which prohibits employment discrimination based on race, color,
religion, sex and national origin—does not impose the
same expectations on areas of disability employment.
But I don’t know that I’d say the issue is completely left
to employers’ consciences. People can file lawsuits, and
they do so all the time, under the ADA.
Part of the law definitely provides protections, a right
that people exercise regularly. People with disabilities
are filing claims in larger numbers, on a per capita
basis. So they are exercising the right to protection, and
that’s good. They know about the law, and they know
the process through which they need to go if they feel
their rights have been violated, whether they’re on the
job or still within the application process.
Johnson: What do you think has been achieved since the
ADA was signed into law, and what remains to be done,
as it relates to employment?
Bruyère: We’ve made significant gains in 20 years. Now
employers think before they put explicitly prohibitive language in job descriptions, or ask questions that flag a person’s disabilities in interviews or on applications. We were
nowhere before the ADA. So over the years, we’ve educated employers about the processes and practices that are
20
ABILITY
inherently discriminatory, and about which many were
quite oblivious before. That’s an important contribution.
We’ve also enabled people who are already in the workforce to exercise their rights in terms of retention. I
think, historically, people who’ve had a disability or an
illness have been the most easily marginalized. ADA
protections afford them a place to file a complaint if they
feel they’ve been disparately treated as expendable workers in a layoff.
Johnson: What do you think is at the core of the discrimination faced by people with disabilities?
Bruyère: It’s a combination of a lack of information
about what makes it possible for people with disabilities
to work, and inherent misconceptions about their capabilities. There are biases and stereotypes. Disability isn’t
unique in this area, but we still need to tackle it.
Johnson: How did you get involved with disabilities issues?
Bruyère: My first jobs were in disability-oriented settings, and I have several family members with disabilities. I worked in a state psychiatric hospital at 16, which
got me interested in this area.
As an undergraduate in college, I majored in special education and psychology, and then I went on to get a master’s degree in vocational rehabilitation. Helping people
find employment equips them to be financially independent, so it’s one of the most important things we can do
for them. I then began to get interested in creating effective service-delivery structures, and that interest motivated
me to do doctoral study in rehabilitation psychology.
Since that time, I’ve worked with service systems and in
employment policy and employer practices. The School
of Industrial and Labor Relations is a terrific home from
which I can focus on employer practices.
Johnson: Did any of your family members with disabilities
face employment challenges?
Bruyère: I think everybody does. Part of my interest in
discrimination comes from seeing people—both near
me and in the broader community—who have difficulty
finding appropriate service structures and who face
biases in their own communities. These kinds of biases
aren’t just part of one person’s story, they’re part of the
stories of many people. That’s why we try to get the
voice of the disability community involved in what we
do. We’ve partnered, for example, with the American
Association of People with Disabilities for at least 10 or
12 years now. We want that sort of input in all the work
we do.
cornell.edu
adata.org
disabilitystatistics.org
ABILITY 21
Virginia Jacko speaks to
students in Tampa’s Hillsborough School District..
n December 2000, Virginia Jacko found she was
rapidly losing her sight to retinitis pigmentosa, a
condition characterized by retinal damage. The discovery prompted her to take a three-month leave
from her executive position at Purdue University and
enroll in Florida’s Miami Lighthouse for the Blind and
Visually Impaired. Although she fully intended to return
to her work at Purdue after her vocational-rehabilitation
program, life soon set the finance expert on a completely
new path.
Within four years, Jacko advanced from student to president and chief executive officer (CEO) of Miami Lighthouse. In her book, The Blind Visionary, written with
entrepreneur Doug Eadie, Jacko uses the concept of
blindness as a metaphor for those of life’s challenges that
narrow a person’s vision and constrain his or her sphere
of action. Jacko met with ABILITY’s Molly Mackin to
discuss what inspired her to tell her story.
Molly Mackin: You seem to have a sense of ease both as a
CEO, and as someone who has mastered life after losing
her sight. It’s impressive.
Virginia Jacko: We all have certain traits and talents that
make us who we are. I know this sounds corny, but as a
result of my blindness I now have more vision, in some
ways. Sight can be a distraction. For example, if you’re at
a restaurant, you start to look around, check out what
22
ABILITY
people are wearing, see who’s sitting with whom, or see
if you know anybody there. But if you can’t do that, your
other senses are heightened: your sense of taste, your
sense of hearing.
Sometimes people ask me if it’s okay to say something
like, “I’ll see you again.” I tell them, “Oh I say that all the
time.” It’s just that I see you in a different way than you
see me.”
Mackin: Your book sheds some light on some of the
advantages of being blind. For example, you say that
during meetings you don’t have to look at people’s negative body language. That resonated with me. Once I see
someone disagreeing with me, even if the words aren’t
coming out of their mouth, their body language can totally trigger doubt in my own mind.
Jacko: You’re right. I haven’t recently seen anyone roll
his eyes at me. (laughs)
Mackin: I imagine you’re probably not too caught up into
fashion, either.
Jacko: I love fashion. Sometimes people say to me, “Do
you miss driving?” and I say, “No, I miss seeing what
women are wearing!”
I still try to be fashionable. I’ll ask my secretary, Sharon,
“What are you wearing today?” and she’ll say, “Oh that
grey suit with the brown stripe in it.” I’ll ask her what
kind of blouse, and she’ll tell me it’s the one with ruffles
in the front. Then, if I go shopping, I might ask if the
store has any blouses with ruffles in the front. (laughs)
I was in a style show once. All of the participants were
lined up with their dogs, waiting their turn. Donna Shalala, the former Secretary of Health and Human Services,
went ahead of me, down the runway. I walked up the
steps, and I stood there for a minute. I thought, “You
must be crazy, Virginia,” and yet I instructed my dog:
“Forward.”
I’d already counted that I had something like 80 steps to
walk, so when we got to 80, I told my dog to turn and, as
I made the turn, I was so thrilled that I hadn't stepped off
the stage that I raised my hand and gave the audience a
big smile and a wave. They gave me a standing ovation.
Mackin: Reading your book made me more aware of all
the ins and outs of living with sight. I found myself wondering how I would cope if I lost my own sight. You talk
about spilling things in the kitchen and navigating that
experience, but I really sensed you were entering a new
world, instead of leaving one behind, when you became
blind.
Jacko: That’s a great insight. Someone recently said to
me, “What was harder: losing your vision or becoming
totally blind?” When you lose your vision, you don’t
want people to know, at first. You hide it. Of course, this
can be applied to a lot of different situations, not just to
loss of vision. You want to be something that you can’t
be, but it’s an impossibility—so you’re frustrated, on
edge, nervous.
Once you learn you’re totally blind, and you’re no longer
trying to see, you say, “Okay. I’m just going to do things
differently. I’m going to use my other senses. That’s a
huge relief.
Mackin: And maybe even a little exciting. Every task
becomes an adventure. In the book you tell a story about
the first time you walked into Walgreens by yourself,
which was something you thought you’d never do again.
Once you did it, you had renewed confidence that you
would be okay.
Jacko: I remember like yesterday the exhilaration I felt
when I got to Walgreens. It was a feeling of, “I did this. I
actually did this.” And then I built on that feeling. That’s
not to say that I’m not fearful sometimes. But one of the
takeaways of my book is never to let fear win. Of course,
that’s a struggle for everyone, because having fear is part
of being a human being. But the key is to not let fear win.
Mackin: One of my favorite parts of your book is when
you describe visiting a restaurant in a department store.
You had been told you wouldn’t be allowed to bring your
dog into the restaurant, but you walked in, anyway, and
sat down as if nothing had happened.
Jacko: That was a very high-end department store, so
when I told the president of the establishment about that
embarrassing experience, the business wanted to brush
me off onto its attorneys. But when I said, “This is not a
litigious matter, but it could become a public-relations
matter,” that’s when they thought, “This could really
affect us. What if she puts something nasty in the newspaper?”
I suggested the restaurant implement a training program,
which they did almost immediately. At the time, I was
thinking, I’m kind of an old horse. But what if I had been
a young girl on a date? That would have been so mortifying. Maybe I improved the lot for the next person.
Mackin: You changed the perspective of the manager and
the hostess, I’m sure.
Jacko: (laughs) I have to keep my head, because stuff like
that can be really annoying. But if one can think of the
proper steps to effect change, it can all work out.
Recently I was at my apartment building, walking by the
pool, which is a pet-free zone. Someone had left a dog
tied up there. It lunged at my guide dog, which lurched
sideways, and I almost tripped and fell into the pool. I
found out who owned the other dog and brought up the
issue. Of course, the dog’s owner didn’t like that at all.
We had an intense discussion about the rules and, in the
end, I told the woman I’d get management to send her a
letter. I felt so invaded that she would even argue with me
about a situation like that! She ended up calling me, apologizing and promising not to bring her dog to the pool
again. I tried to end the whole thing on a good note.
You’ve got to keep things in perspective while you’re
being an advocate for yourself.
Mackin: Pet rules can be tricky.
Jacko: You know, some people get bogus certifications
for guide dogs, or they get guide dogs even if they don’t
have a disability. But those dogs don’t have the same
intensity of training. My guide dog is totally under my
control when we’re in public. If you have an animal that
is assumed to be a certified guide dog but doesn’t act like
one, you’re ultimately affecting the rights of people who
actually do have a disability.
Mackin: When the job posting for CEO of Lighthouse
opened up, your counselor had told you that you’d never
be considered for the slot. Then, when you were chosen,
someone quit on the spot. How did you feel about that?
Jacko: People sometimes resent me because I’m a very
confident person. I think sometimes they want to patronize me, and sometimes I let them get away with that a little bit. Maybe they’ve never been around a blind person.
ABILITY 23
Sometimes auditors come to our office for big meetings,
and never talk to me at all. They talk to the other board
members. I have such a strong financial background that I
get a little personal pleasure from letting them totally discount me before showing them I know as much as they
do. That always surprises them.
I can read an Excel spreadsheet on my computer, which is
something they don’t expect. Or they’ll say, “I’ll send this
information to your chief-financial officer. He can read it
to you.” And I’ll say, “Send it to me; I’ll read it.” So they
leave knowing a blind person can do more than they
assumed.
Being put down is not easy. My instinct is to be snotty,
but I have to control that instinct and be gracious, even
when people are being rude to me. There are probably
sighted people running private agencies that service the
blind who think the reason Miami Lighthouse has grown
so successfully is because of its location, not because it’s
run by someone with great leadership skills who happens
to be blind.
Mackin: Do you think people who have never dealt with
blindness could possibly know what your world is like?
Jacko: No. Recently my husband and I were having dinner with a couple—a blind attorney and his very recent
girlfriend. She said to my husband, “I know all about
blind people! I could teach classes about them.”
My husband said, “Really? I’ve been with my wife for
years, and I still don’t know what it’s like to be blind.” I
think you have to be blind in order to truly understand.
In our job-readiness program, one of the students asked
the instructor, “When you’re totally blind and you’re on
the job, how do you go to the cafeteria?” The instructor
brushed off the question as being off-topic. That’s an
example of a sighted person not thinking about what the
situation would really be like for someone with vision
limitation. If you had sight, you would pick where you
wanted to sit, in part depending on whom you know in
the room. But when you’re totally blind, you’re just
thrilled to find a seat and grab the first one.
Mackin: What are your plans for the Institute?
Jacko: Miami Lighthouse is becoming recognized as a
national center of excellence. We’re expanding our
mobile eye-care program for needy children. We just
brought our eye-care unit to Naples, FL, where 92 percent of the children we saw needed prescription glasses,
but had no way to get an eye exam or glasses because
they didn’t have Medicaid or any form of insurance.
With the recent contract from the Florida Department of
Health, we’ve been able to expand our program to all of
Florida’s counties. We’re also expanding Braille literacy
as, unfortunately, Braille is being used less and less. If a
24
ABILITY
totally blind child wants to become an attorney or an
executive here in Florida, he needs to pass an exam in
either print or in Braille. If he doesn’t have good Braille
literacy skills, he will not be able to get a standard
diploma.
Expanding low vision services to seniors who may never
be classified as legally blind is also a priority for us. They
should be able to remain independent in their homes and
not a burden to their families or moved into assisted living. They need to learn how to do things differently, with
the right lighting, with the correct lenses, with the right
shading of the lenses, with the right magnification and
other assistive devices.
We have a plan to collaborate with professionals in academia, as well. We purchased a house across the street
from Miami Lighthouse and we’ll use it to house people
who need continuing education units, occupational therapists and physical therapists. So we’ll provide all of that.
The population of people with low vision is exploding,
and medical professionals need to know how to work
with people with low vision.
Finally, we’ve begun a residency program with the Bask
and Palmer Eye Institute: a collaboration between this
nation’s number one eye-care institute and the number
one leading vision rehabilitation center. These collaborations create a synergy of excellence.
Mackin: What is your national or international vision for
the Miami Lighthouse?
Jacko: Miami Lighthouse has a national reputation. Articles in peer-review journals highlight our ceramics program, in which the blind can “see” using their hands and
create beautiful art. There’s an article about our music
production program, which is a program enabling the
blind to find mainstream employment through what we
call our Better Chance music production program. That’s
been trademarked and the curriculum has been copyrighted. I also have an article about our free eye-care program
in optometry, published in the Journal of the American
Optometric Association. That organization is featuring us
as a model for other states to adopt.
Mackin: How were your children affected by your experience going blind and moving to Miami?
Jacko: My children are used to having a mother who is
highly confident and who sometimes goofs and spills her
coffee. They are very independent, as am I. It’s just that I
have another way of doing things, and I need to rely on
their sensitivity, in certain situations.
In other situations, I’m no different than any other mom. I
know they’re proud I didn’t let blindness get me down. It
was my daughter, who was teaching here at Florida International University, who said, “Mom, you have to relocate to Miami and get your vision skills at the Miami
Left: Jose Feliciano, Virginia and
Miami Lighthouse musicians.
Right: 7) Virginia Jacko, Gibney
and Doug Eadie at a book signing.
Lighthouse.” That was some time ago. To relocate here
for the purpose of vision rehabilitation, stay on in Miami,
get on the board of directors, and finally become the first
totally blind president and CEO of the organization is
more than any of us could have ever asked for.
Mackin: So your daughter stepped up and said—
Jacko: She saw me struggling with the computer, and her
PhD is in human interaction with the computer. She wrote
a proposal to the National Science Foundation and, under
President Clinton, received one of 20 very distinguished
awards called the President’s Early Career Awards for
scientists and engineers. She used a grant of a half-million dollars to develop software whereby the blind and
visually impaired get a computer designed for their specific eye diseases. My daughter has published research on
macular degeneration and accessibility issues for people
who are visually impaired.
Mackin: What kind of message do you hope to send
through your life and work?
Jacko: I’ve noticed that sometimes people handicap
themselves by saying, “Oh, I can’t do this,” or, “I can’t do
that.” Of course there are certain things people with a disability can’t do. If you are legally blind, you’re not going
to be piloting an airplane. Someday, maybe, technology
will evolve to a point at which that becomes possible. But
in the meantime, there are so many things that blind people can do. It’s a shame how many handicap themselves.
This Thursday I’m meeting with a teenage boy who
just learned he has Stargardt Disease, which is typically
the early onset of macular degeneration. People with
this disease very seldom go totally blind, but they do
have to learn how to use their vision differently. My
goal is to help this boy and his family understand that,
once you know why your child is having trouble seeing, you can deal with the circumstances. You can still
be a high achiever and have academic success. Maybe
when you take your exams you’ll need to have a little
more time, but that’s not going to be a mark against
you. It’s going to be a way for you to have the test
scores you deserve.
Mackin: What do you want people to glean from your
personal and professional experiences?
Jacko: The Blind Visionary is for anyone, not just for the
blind community. I hope this book has four take-aways,
each of which can be remembered under the acronym
“RANK.” “R” is for “Reach out aggressively to find
stakeholders, colleagues, and advocates.” “A” is for “Act
on opportunities because they are always in front of us.”
“N” is for “Never let fear win.” And the “K” reminds us
to “Keep things in perspective.”
Throughout the week I’ll often ask myself, “Virginia,
how did you RANK?” That’s always a question worth
asking, no matter who you are.
miamilighthouse.com
ABILITY 25
ven while growing up in Northern California’s
Bay Area, David Zimmerman knew his sights
were set on a career in Hollywood. In first
grade he directed, produced and starred in a production
of Hansel and Gretel. Years later, he majored in drama
at San Francisco State University, and went on to study
at the prestigious American Conservatory Theatre. He’s
appeared in commercials for Round Table Pizza, Subway and Greyhound, and in such film and TV projects
as Meet the Fockers, Unknown and Nip/Tuck.
Today Zimmerman heads up Meet the Biz, a monthly
series of workshops designed to help others achieve
industry success. He spoke with ABILITY’s Pamela K.
Johnson to discuss the impact of his work.
Pamela K. Johnson: What motivated you to start your
company?
David Zimmerman: I’d grown up admiring certain
actors and producers, and I wanted to work with them.
So when I moved to Southern California, I was determined not to take a job at, say, Starbucks—even though
I hear they have medical insurance. (laughter) Instead,
I wanted to bring together professionals to talk to people
26
ABILITY
like me, who wanted to be in the business. That’s why I
started offering workshops.
Today, people who take my classes have gotten to work
with the late director Corey Allen, and with actors like
Bruce Davidson, Lainie Kazan and Geri Jewell. Geri
has cerebral palsy and was the first person with a disability to really get out there on television with The
Facts of Life and, more recently, with Deadwood.
Meet the Biz recently hosted a session with Howard
Fine, who runs a top-acting workshop in Los Angeles.
We staged 10 scenes and showcased 20 students in a
class that ran for over an hour. Some participants had a
disability and some didn’t. Howard made sure everyone
got time to perform.
All of our instructors bring in material they’d like to
teach, lead different exercises, and tell amazing personal
stories. They really go deep into the process. That’s
important because we’re all in the same bag: looking for
jobs and seeking connections. Why not to work together? You never know where that might lead.
Johnson: How did you break into the business?
Bruce Davidson
leading a workshop.
Dee Wallace and Charlene
Tilton perform a scene.
Actors at Meet the Biz
workshop coached by
David Lander.
Zimmerman: As a kid, I always had a picture of the
Hollywood sign above my bedroom door, and I always
knew that some day I would end up here. After graduating from college—where I won the Faculty Drama
Award—I continued to seek out theatrical work and
roles in short films.
I moved down to Los Angeles when I was about 30, and
found a place to live, got a job, enrolled in acting classes, landed a commercial agent, and then a theatrical
agent. I was able to get into the Screen Actors Guild,
mostly by doing national and regional commercials.
After I joined the union, I continued to accept work on
student projects at the American Film Institute and the
University of Southern California, because I reasoned
that film students go on to become working directors.
My gamble paid off, as I’ve gotten jobs from some of
those same people who not only went on to become
directors, but also casting agents. I even called one of
them to come and work with me on a project.
Johnson: So how do you ‘meet the biz,’ when the line is
so long?
Linda Lutz and
Zimmerman in a
Media Access
Production of The
Beautiful People.
Zimmerman: One of the best methods of breaking into
film and TV is Backstage/West, which is an online database where you can post your pictures and resumé. It
also offers information about casting notices, auditions,
talent competitions and workshops.
Still, it’s very hard to make a living as an actor, so you
have to do a lot of different things. Some people think
that being a waiter/actor is diversifying. But if you’re
going to do two jobs, the second one might as well be
casting, producing or singing. I resolved to take other
jobs within the industry rather than work outside of it.
So instead of being solely a waiter, I was a singing character waiter at Bobby McGee’s in Brea, CA. (It has
since closed.)
I took time off from everything, though, when my dad
was dying. He had cancer and other health problems
over a nine-year period. I’d go back and forth between
LA and home, so I could spend time with him. That
experience changed something in me. I did love acting,
and still wanted to go for it, but family comes first.
Towards the end of his life, I was home full-time. It was
ABILITY 27
The premiere of Inclusion Film’s
Spud with Gloria Castaneda, program director of the Media Access
Office, Zimmerman and friends.
good for me, and it was good for my mom. I was there
with him ’til the end, through the morphine and all.
Johnson: How did you make the shift into casting?
Zimmerman: I got a call from someone who asked me
to help cast a film. After I did that, somebody else
called me up a month later. He had a casting job that he
couldn’t take and said, “Why don’t you do it?” That
film happened to be a pilot for Showtime. After that, I
got an opportunity to work on Penn & Teller’s Bullshit!
Johnson: When you cast a project, do you audition
actors of varying abilities?
Zimmerman: Yes. In one of the pilots that I cast, we
were looking for a surfer type. One of the actors I
brought in was Toby Forrest, who is a C-5 quadriplegic.
He is an amazing talent who looks like he could have
been a surfer. I told the producer and director it would
be great to have Toby as the best friend of the lead
surfer, as the series moved forward. But unfortunately it
didn’t get picked up.
While I was casting the movie Modus Operandi, I was
searching for someone to play the role of a seductive
woman with a lot of problems. I brought in Lexi Marman, who is an incredible actress and is hard of hearing.
She booked the role even though it wasn’t written anywhere in the script that her character had hearing loss.
Johnson: Glee has a character in a wheelchair. Marlee
Matlin, who is deaf, was on Celebrity Apprentice last
season. How do people or characters with disabilities
affect not only public awareness, but also casting directors’ willingness to tap these performers for auditions?
Zimmerman: I think those actors and characters can
have a significant impact, and I think those opportunities are definitely opening up. As a casting person, you
think, Oh yeah! This person—who happens to have a
28
ABILITY
Lainie Kazan with students from
a Meet the Biz workshop.
disability—would be great in this role. A short-statured
person can play a husband or father. When people are
open-minded, it takes the focus away from the disability, and makes the role more about the person.
Johnson: I know the industry is tough for everybody, but
how might people with disabilities strategize for successful Hollywood careers?
Zimmerman: As I said, if you’re an actor, it helps if
you’re able to do more than one thing. Aside from acting, Toby Forrest is the lead singer of the band Cityzen
and has a radio talk show.
You’ve got to wake up in the morning, go online and
submit yourself for jobs. Know what you want, and
where you can fit in as you try to break through barriers.
Johnson: You work closely with the Media Access
Office. How does that organization help with up-andcoming performers?
Zimmerman: The office’s goal is to promote employment and accurate portrayals of people with disabilities
in media and entertainment. Plus, it has over 900 members with a wide range of disabilities. Media Access can
serve as a portal through which casting agents, producers, directors and others can walk to find diversity.
Johnson: What influence do you think such an organization can have on the industry?
Zimmerman: Media Access brings visibility to our
diverse acting community, which is important. Ultimately it would be nice not to need these events and organizations because everyone is included and represented.
But we’re not there yet.
Meetthebiz.net
disabilityemployment.org/med_acc.htm
actorsforautism.org
ABILITY 29
PAWS/LA Client Alex DeMay with
his dogs. Eddie, aYorkshire Terrier,
and BenWa, a Lhasa Apso.
eaping dogs and cats painted in brilliant colors
welcome guests into the cozy office space of Pets Are
Wonderful Support Los Angeles (PAWS/LA). Once
inside, snapshots of clients’ furry companions hang on
staff members’ bulletin boards. And throughout the building, which is tucked away on a gray, downtown L.A.
street, animal art is for sale with proceeds going towards
the care and feeding of pets that belong to the city’s sick
and elderly.
citizens with modest incomes. For some, whose lives
have become isolated, a pet may be their only friend.
In 1989, founder Nadia Sutton was inspired to create the
organization as a friend laid in his hospital bed, dying of
complications related to AIDS.
Raymond Baltazar, a PAWS LA volunteer/outreach
coordinator, greets me with a smile. Last year, he left
corporate America, where he worked in the fashion
industry, to join PAWS LA. “We’re making a big difference in our clients’ lives,” he says as he gives me a tour
of the facility. “We keep friends together.”
“Sobbing in my arms, Richard told me his family had
given his cat, Boo-Boo, away.” The loss of his pet had
thrust Sutton’s friend into a deep depression. “Now I
have no reason to get better and go home,” he told her.
“Needless to say, we got Boo-Boo back, and he and
Richard spent six happy months together.”
PAWS/LA, which initially served two clients, has grown
over the last 20-plus years to service upwards of 1,800
people, and over 2,000 companion animals throughout
Los Angeles County.
City and state grants, along with individual and corporate donations, enable PAWS/LA to serve two groups of
people: those with life-threatening illnesses, and senior
30
ABILITY
“My cat saved my life,” said one PAWS/LA volunteer
and client who has AIDS, and preferred not to give his
name. He has been HIV positive for more than two
decades years. “My cat makes me think about something other than my illness, because I focus on his
needs.”
Two years ago the nonprofit relocated from a tiny, West
Hollywood office, to a larger downtown location, making it more centrally located, and capable of housing a
range of donated supplies.
During PAWS/LA’s food drives, clients can come and
pick up dry and canned food and other necessities for
their pets. Behind the office space is a small warehouse
where goods are stacked from floor to ceiling. Toys,
beds, travel kennels, kitty litter, and treats are donated by
such companies as Petco Foundation, Pedigree, Natural
Foods and Target. Approximately $200,000 worth of pet
food is contributed annually.
Other non-profits often lend a hand as well. Last year,
PAWS/LA partnered with the Exceptional Children’s
Foundation (ECF), which provides services such as
recreational activities, work training and supported
employment to children and adults with developmental, learning and emotional disabilities.
During a drive, volunteers, including ECF men and
women, form an assembly line to give out goods and
pet food, which is portioned into plastic bags for client
pick-up.
In addition to offering supplies, the organization provides
dog-walking services; grooming and veterinary care;
emergency-foster care; transportation as needed; and
housing-rights advocacy for animal guardians with a
disability.
Journal of Clinical Nursing assert that senior citizens
who live with pets are more active, more healthy, and
more content.
Dr. Allen Schoen, veterinary-medicine practitioner,
supports that theory. In his book, Love, Miracles and
Animal Healing, he writes, “We emit energetic signals
related to our deepest feelings that are picked up by
those around us—especially our pets.”
Animals are believed to sense humans’ emotional
needs and respond. The proof is in the patient: Whether
a person is young or old, sick or the picture of health, a
warm relationship with a pet lifts their spirits and, really, isn’t that what friends are for?
by Jamie Freiburghouse
pawsla.org
“Our clients often come in tired, worried and stressed,”
says Scott Dunlevie, client-services coordinator, who
joined PAWS/LA after retiring from the phone company. They may have faced the prospect of finding a new
home for an animal, which meant losing a trusted
friend. “It’s unbelievable how good it feels to rid them
of those feelings and give them hope,” he said.
Omar Olivares, client-services assistant, adds that
PAWS/LA is often a person’s “lifeline.”
Both the Journal of American Geriatrics Society and the
ABILITY 31
32
ABILITY
uincy Jones’ music-industry reign spans more than six
decades. He’s taken home a phenomenal 27 Grammy
Awards, and found winning formulas for the likes of Michael
Jackson, Frank Sinatra and Barbra Streisand. A major multimedia presence, he produced TV’s The Fresh Prince of BelAir, created Vibe magazine, and co-produced the movie The
Color Purple with director Steven Spielberg. Topping off
his voluminous achievements are a Kennedy Center Honor,
the French Légion d’Honneur and seven Academy Awards
nominations.
When Jones met John Sie, founder of Starz Entertainment
Group, the two became fast friends. Today they work
together in advancing a number of pet projects, including
the Global Down Syndrome Foundation, the founding of
which was inspired by Sie’s granddaughter, Sophia, who has
Down syndrome.
In 2009, GDSF created the Quincy Jones Exceptional Advocacy Award in recognition of the musician’s prodigious philanthropy. As the producer behind two We Are the World recordings, he played an integral role in raising financial support for
famine relief in Africa in 1985, and aid to those affected by
the Haitian earthquake in 2010.
ABILITY 33
DeOndra Dixon, Jones, Anna and John Sie,
and Deondre’s big brother, Jamie Foxx.
ABILITY’s Chet Cooper caught up with Jones in Los
Angeles.
Cooper: How did you get involved with the Global
Down Syndrome Foundation (GDSF)?
34
Jones: Absolutely. I took a trip to Denver, where I met
beautiful little Sophie, his granddaughter, and it was
love from then on.
Cooper: Let’s talk about the Linda Crnic Institute.
Jones: John Sie is an old friend of mine. He’s a pioneer
of cable television, high-definition television and a range
of technology. He knows his business backwards and
forwards. So we were kicking around the idea of launching a black-oriented entertainment network, because I
wanted to see one that’s more useful to the black community than what is being offered today. Eddie Murphy,
Denzel Washington and Will Smith were going to come
together on it with me. We decided to put that project on
hold for a while, ultimately, but John and I became
friends forever. He truly is my brother from another
mother.
Jones: The people there are doing great work. They’re
so passionate about the mission, and John is totally
committed to it.
Cooper: Do you think you might still pursue the creation of that network?
Jones: Absolutely. We recently met with AT&T, TNT,
DirecTV and Comcast. It’s exciting. It gets me out of
bed in the morning.
You’d think all these kids on the runway would be shy,
but they’re strutting like Naomi Campbell and Christy
Turlington, you know? One time they had me on the
dance floor, and they almost put me in the hospital.
(laughs) I just love them, man! These kids are so smart
and so emotional.
Cooper: As your friendship with John evolved, he called
you up and said,“I have an idea for a nonprofit.” Is that
how it happened?
Cooper: So many of us are guarded in what we say and
in showing how we feel. The people I know with Down
syndrome seem to be more honest and sincere.
ABILITY
Cooper: Other than Sophia, have you met many children with Down syndrome?
Jones: Throughout my life: A lot of celebrities have kids
with Down syndrome. For the last two years, I’ve been
working with Jamie Foxx, whose sister, DeOndra, has
Down syndrome. He brought her in to do our Be Beautiful,
Be Yourself fashion show, and she said, “I’m the star!”
Jones: Absolutely. Sincerity flows out of them. Every time
I’m with the kids, they want to feel my hair. I had two
brain operations for an aneurysm, and they get curious.
Cooper: Can we talk a little bit about your aneurysm?
Jones: It’s a weakness in the main artery to the brain, a
congenital weakness, and it hit me like a ton of bricks. I
was in a coma. I didn’t know what had happened until I
came out of it. My head was all wrapped up. Doctors
had drilled a hole in my head and sawed out a piece of
bone. They told me, “The good news is, you lived. The
bad news is, you’ve got another one, and we’ve got to
go back in.”
Man, I lost it! (laughs) When they operated on me
again, two months later, I became paralyzed on my left
side. My doctor said, “Get your butt on that road, or
you’ll be a vegetable the rest of your life.” My band
had a 15-day tour in America, and a 15-day tour in
Japan the following year, so I went out on the road.
She was right: When I finished the tour, I wasn’t paralyzed any more.
Cooper: That was your physical therapy?
Jones: Exactly! Shakin’ my booty! [laughter] It was
great, man! It makes you appreciate life more, I’ll tell
you that.
Cooper: Teri Garr had an aneurysm, too.
Jones: A couple of actresses have had it. It’s no joke.
Cooper: I was at her house for an interview, and she
wouldn’t come downstairs. Her daughter thought it was
strange that her mother was still in bed. She realized
something must be wrong. Turned out Teri was having an
aneurysm.
compare findings. They share information with me
about the coming nanotechnology, which they say will
be a billion times faster than this dinosaur stuff we’re
using now. I hear them talking about the paradigm
shifts that will happen as a result of these innovations.
It’ll shake the world to the ground.
Cooper: Do you have any heart problems?
Jones: Oh, no. I’ve got a heart like a mule. Like a Viking.
My daddy was half Welsh, and boy, that global gumbo
is very strong.
Cooper: Let’s talk a bit about the global gumbo that is
music. It’s interesting to me that it’s both artistic and
mathematical. Do you ever think of music in terms of
wavelengths?
Jones: Are you kidding, man? I’ve thought about it that
way for most of my life. For one thing, symphony
orchestras tune up to A, right? That’s 440 cycles. It’s
not an accident that the universe is 450 cycles.
I traveled with Nat King Cole in the early ’60s. He’d do a
verse of Autumn Leaves, a capella, and then the orchestra
would come in under him—and the orchestra was out of
tune because Nat King Cole had perfect pitch. Mathematics and music are absolutes—brothers of a sort.
Music always engages the left and right sides of the
brain. You’ve got emotion and intellect at work at all
times, and that makes it easy to learn everything else.
I’m a strong advocate of having music connected to
your life. It’ll turn you upside-down. I see people with
dyslexia and attention deficit disorder (ADD) benefiting
from it.
Cooper: We actually are working on a music-therapy
program.
Jones: It’s powerful, man.
Jones: Oh, my God, man! While you were there?
Jones: You don’t know what it is, at first.
Cooper: We’ve written what we call The ABILITY
Song (Everyone Be Beautiful). Anyone can join in the
song by playing the kazoo, because if you can breathe,
you can play kazoo.
Cooper: Her daughter thought she was just tired.
Jones: Did you write the song?
Jones: When it happened to me, I blacked out all of a
sudden. I looked at the television and suddenly I had
double vision. It felt like a shotgun had been fired into
my brain. I went in and out of a coma because of the
pain, I guess. It’s amazing. I didn’t know my own children’s names, or even my own name. My daughter was
just six months old.
Cooper: It was a co-production between Molly, an editor who’s on sabbatical now, and myself. She’s a wonderful singer and an incredibly talented writer.
Cooper: Yes.
I’ve been working with a doctor in Stockholm for the
last five years. There are also 14 doctors I see, once a
year, over the course of six days. They get together to
Jones: I’d love to hear that; I could make it an anthem.
(laughs) And everybody can play a kazoo.
Cooper: It’s amazing how many people with disabilities
are involved in music.
Jones: Look at Albert Einstein. He had ADD, he was
ABILITY 35
Above: A US delegation, which
includes Jones, visits Nelson Mandela
in South Africa. Below, Jones testifies
before a Senate subcomittee.
dyslexic, and he dropped out of school. He also played
violin. (laughs) He and I have the same birthday, so I
paid a lot of attention to him. Did you take algebra?
Cooper: Yes.
Jones: Pi is 3.14, right? That’s my birthday and the
birthday of actor Michael Caine, too. We were born in
the same year, month, day and hour. It’s like we’re
twins.
Cooper: You’re all part of the same pie?
Jones: Oh, yeah. (laughs) Exactly. We fell out of the pie.
Cooper: What you’re describing sounds something like
astrology.
Jones: Yes. I didn’t get into that stuff until I met astronaut John Glenn, whom I’ve now known for about 25
years. He was one of the first in space in the ’60s, and
he taught me a lot about gravity. We think we’re
grounded, but we’re not grounded. We’re living on a
ball of infinity. It’s Earth’s 360-degree revolution, 24-7.
36
copies of Fly Me to the Moon to astronauts Neil Armstrong and John Glenn. I had arranged the song for
Sinatra in the early ’60s, and astronauts from the Apollo 10 and 11 missions played it while they were up
there. For the 50th gala, I directed a special performance of the song by Frank Sinatra, Jr., and a 100member orchestra.
Cooper: Have you actually witnessed a launch?
Jones: I’ve seen a couple of them. They’re amazing and
terrifying. Those shuttles make a lot of noise.
Cooper: You can feel the soundwaves ripple inside your
body.
Jones: Yes. Those take-offs, with all that equipment,
knock things down. You know, my friend, the late astronaut Ronald McNair, played alto sax. He was on the
Space Shuttle Challenger when it exploded.
Cooper: There are some young people who may not
know as much about your background. Can we go into it
a little bit?
Cooper: Yes, most people haven’t thought of it that way.
Jones: You’ve got some time? (laughs)
Jones: Yes, sir. At the 50th anniversary of the American space program last year, I presented platinum
Cooper: Hmm.... (looking at his wrist - no watch)
ABILITY
Jones’ astute and timeless
producing skills in the studio
led to his composition of
countless film and movie
scores, 27 Grammys and
several Oscar nods.
Jones: (laughs) You can’t imagine how blessed I’ve
been. I was playing with Billie Holiday, Billy Eckstine,
Cab Calloway, and all those guys when I was 14 years
old. And then, later, I worked with Ella Fitzgerald and
Sarah Vaughan. I was with Count Basie for almost 25
years. Frank Sinatra, Ray Charles, Aretha Franklin, you
name ’em, man.
We did the first record with Big Maybelle, A Whole
Lotta Shakin’ Goin’ On. Years later, when Jerry Lee
Lewis did it, he became a legend.
I saw when the white community started to get hip to
black music in ’54, and it became an emotional revolution.
The same thing happened with The Beatles in England in
’64. The English really knew what they were doing. I saw
them putting The Rolling Stones together, and I’d just
done Lesley Gore’s It’s My Party. People told me, “You
don’t have to do rock ’n roll,” and I said, “You wanna
bet?” We had 18 hits with Lesley. It was a great time.
Cooper: One of the first interviews that this magazine
put online was a conversation with Ray Charles.
Jones: Ray and I came up together in Seattle. We met in
1948 and spent the rest of our lives together. We were
teenagers when we did bar mitzvahs and schottisches.
We played with marching bands and street musicians.
He came from Florida, and he could see until he was
six. He told me that he was in a foster home, got chicken pox, and went to a white hospital where they wouldn’t let him in. He said that by the time he made it over
to the black hospital, he was already blind.
Cooper: Your early years with Ray and others seemed to
focus on jazz.
Jones: A lot of guys said I sold out jazz when I produced Michael. I said, “You’ve got to be kidding, man!”
The way I see it, you just use your skills and don’t lose
your integrity. That’s very important.
Cooper: You’ve done so much more than music—
Jones: I’ve done 40 movies. In Cold Blood was the first.
And we discovered Oprah with The Color Purple, and
then Will Smith with The Fresh Prince of Bel-Air, back
when he was a rapper. He may be the biggest star in the
world now.
When you take a step in defeat or retreat, and you get
cautious and reticent, it doesn’t serve you. You can’t get
an ‘A’ if you’re afraid of getting an ‘F.’ So when you
take a giant step towards victory, even if you fall down,
get right back up, and hit it again.
I’m at the point now where nothing scares me. Nothing!
ABILITY 37
Above: The late Ray Charles and
Jones were friends from their teenage
years. Inset: Michael Jackson, Steven
Spielberg and Jones collaborate on
the film ET The Extra Terrestrial.
If I don’t go through the front door, I’ll get in through the
back window. Being underestimated is so powerful.
Cooper: But people are more likely to overestimate you,
because you’ve been so successful.
Jones: Sometimes I get crazy dreams and wonder
whether I can pull something off. In my commencement
speeches, I tell kids, “Make your dreams so big that if
you only achieve half of what you’re after, you’re still
in good shape.” If you can see it, you can be it. That’s
what I love about John Sie’s kids. They’re so sweet.
I believe children’s rights are a global issue. In Angkor
Wat, Cambodia, there are 10 million landmines left
over from the Vietnam War. So many kids have had
their legs blown off. Same thing happens in Colombia.
It’s crazy. We’ve got two hospitals in Angkor Wat, and
I’ve adopted some families over there.
Cooper: I know you’re involved in some work in the
Middle East, as well.
Jones: We went to Iraq in 2003 to help escort 200 kids
to a children’s hospital in Washington. We left our
American plane in Jordan and were given a New
Zealand plane to use. We even wore bulletproof vests,
and descended straight down like we were going to
crash, to avoid rocket-propelled grenades as we landed
in Baghdad. It was an astounding trip because this area
38
ABILITY
was once known as Mesopotamia, the Tigris, and the
Euphrates—names straight out of history. It just blows
my mind that this kind of destructive stuff is happening in such historic places.
Shortly after the earthquake in Haiti, we provided humanitarian aid by donating the proceeds of a second recording
of We are the World. We are currently developing a transparent accounting system to show where every cent of the
proceeds go. A lot of big organizations spend upwards of
50 percent of their received donations on overhead. I
can’t stand that, but I won’t call out any names.
Cooper: Their initials are—
Jones: (laughs) It drives me crazy. I travel all over the
world. We just got back from Korea, Seoul, Beijing,
Shanghai, Morocco, Sardinia.
We’re working a lot with Paul Kagame, the president of
Rwanda. He’s an amazing guy. I’ve also been working
with Nelson Mandela for 45 years.
Cooper: So much world, so little time.
Jones: (laughs) I know. We’re doing a film in Brazil,
and we’re taking along musicians from Mississippi and
Louisiana who were affected by Katrina. That’s why I’m
just so passionate about what John is doing with Global
Down Syndrome Foundation: He’s addressing something
Jones with studio musicians.
Inset: the producer with the
late Sammy Davis, Jr., a
phenomenal performer.
that’s close to him and impacts so many others. That’s
what it takes: passion, knowledge—he’s got it all.
John knows how to put that left and right brain together
and get them both going. He’s fueled by emotion, but
also has an understanding of science. We’re both learning everything we can about Down syndrome, and about
eradicating the medical and cognitive effects associated
with trisomy 21—the chromosome that’s associated
with causing Down syndrome—through scientific
breakthroughs.
This kind of work is a lot like putting together a symphony orchestra. You have to get the right people in the
room: four trombones, four trumpets, five saxophones, a
guy who plays piano, guitar, bass, strings, percussion.
(laughs) When you’re trying to get something going,
people need to complement and support each other, yet
still maintain their individual strengths.
Cooper: Do you see the quest for disability rights as a
human-rights issue or a civil-rights issue?
Jones: It’s all the same to me. (laughs) It’s humanity.
People can’t be responsible for their skin color, or what
condition they were born with. They had nothing to do
with that.
Cooper: You’re familiar with the ‘r-word’?
Jones: Oh, yeah! Absolutely.
Cooper: Do you remember the TV show Life Goes On?
Jones: Do I remember it? (laughs) In 1991, I was in an
episode called “Last Stand in Glen Brook.” Chris Burke
played Charles “Corky” Thatcher.
Cooper: I interviewed the actress Andrea Friedman,
who played Corky’s girlfriend on the show.
Jones: No kidding? I must’ve worked with her, then.
Small world.
Cooper: I asked Andrea, who has Down syndrome,
what she thought of the ‘r-word’. Growing up, she had
her own strategy for dealing with it: She would tell
kids, “Quit bothering me, because I’m gonna tell my
ABILITY 41
sister.” And then she would tell her sister, and her sister would take care of them. [laughter]
Jones: I love that.
Cooper: I’m always taken aback when I hear kids bully
children with disabilities.
Jones: There’s the same problem among adults. Marlon
Brando called me 35 years ago and left me a message. He
had seen some racism on a college campus, and his phone
message was: “I don’t know what to do about it, man. If
people were all the same color, the same hair, the same
blue eyes, it wouldn’t be two minutes before the righthanded people would be kickin’ the s--t out of the lefthanded people.”
Dinner, the father of the young white woman is a latent
bigot, until he gets to know his daughter’s fiancé and
discovers the young man is of upstanding character
and principles.
Jones: Exactly.
Cooper: I’m amazed by your ability to remember so
many people and experiences.
Jones: I think they cleaned all the cobwebs out when
they went in for the brain aneurysm. (laughs) Before the
second surgery, the doctors told me, “We’re going into
where your memory and motor skills are.” It was terrifying because the pathways of the brain are so complex
and interconnected.
Marlon was right. It’s all the same. It’s tribal. “You’re
not like me, so I’m gonna make you feel small so I can
feel like a giant.” It makes me sick.
Cooper: I watched a relatively new procedure at the
Cleveland clinic in Ohio. Surgeons put a probe inside
the brain of a person with Parkinson’s.
Cooper: How do we reach out to these groups that need
a shift in awareness? That’s always been the challenge.
Jones: Oh, my.
Jones: I think music accomplishes that better than anything on the planet. It’s no accident that God only left 12
musical notes for everyone in the world to share. That’s
a basic line of communication. You can’t get away from
it. As soon as you hear music, whether it’s diatonic,
pentatonic, chromatic—you can identify it in two seconds, anywhere in the world.
Cooper: They had mapped the patient’s brain, and
once they turned on the electric stimulation, the shaking instantly went away. The procedure changed that
person’s life.
Jones: Parkinson’s. That’s what Muhammad Ali has,
and now Glenn Campbell is dealing with Alzheimer’s.
It’s sad to see them go through such challenges.
I used to sit in Istanbul, in the Sophia mosque, all
night and listen to guys sing a capella as all the quarter tones echoed off the marble. I told Malcolm X
about it when he came back from Mecca, and he’d
noticed that same sense of unity we’re talking about.
He said, “Man, it’s not about race, it’s about belief!”
In Mecca, he saw blond-haired, blue-eyed people. It
shocked him. (laughs) In the United States, racism
often keeps us separated from one another.
Cooper: Your life is full of enough material for several
movies. What are you doing with your knowledge base?
Cooper: Are you familiar with temperament theory
and the Meyers-Briggs personality test?
Jones: We’re doing nine movies right now. We’re doing
an IMAX movie about Katrina, and two movies about
Brazil—one on the favelas (shanty towns) and the other
about their Carnival celebration.
Jones: Absolutely.
Cooper: I think when we see people who are bigoted
or racist or using the ‘r-word,’ they’re coming from a
place where that is the predominant way of thinking.
The majority of people on the planet are sensorybased personalities. They aren’t comfortable with
change or with moving beyond their norm.
Jones: Using it, spreading it, sharing it with my kids.
I’m getting involved with diverse groups of people on
an international basis. At this point, I feel at home
everywhere in the world.
Cooper: Do you continue to produce shows?
Cooper: Nice.
Jones: Carnival is amazing. I go to the one in Rio every
year; it’s one of the biggest spectacles of all time. The
music blows your mind. I’ve never heard such good
music in my life. The lyrics are Portuguese, while the
rhythms have an African influence.
Jones: I agree.
Cooper: You no longer play an instrument, right?
Cooper: And the way you change the mindset of those
people who are not intuitive is to put them in situations
in which they can have a first-hand experience of differences. For instance, in Guess Who’s Coming to
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Jones: I play piano, but no more brass. I’ve got my horns
on the wall now, where I can look at them. I have Dizzy
Gillespie’s trumpet, and Cannonball Adderley’s flute.
Left: Frank Sinatra and Jones.
Right: Willie Nelson, Jones and
Bruce Springsteen.
Cooper: What about a kazoo?
Cooper: Who’s going to make the movie of your life?
Jones: I’ve got to get one of those. You ought to create a
brand for that.
Jones: I don’t know. We’ve got so much stuff going
on! I did a concert for Mandela in London, a few years
ago, when he was 90. Backstage, a guy came up and
asked me to meet his daughter, Amy Winehouse. She
recorded It’s My Party, on my last album. Twentyseven and gone.
Cooper: We thought about it. We found one place
in the States and, of course, several places in China
that manufacture kazoos.
Jones: It’s a good idea. With the technology available
now, you could do even more than just a kazoo sound.
We’ve been playing around with some guys who
invented a thing that creates the sounds of strings, cellos, woodwinds, percussion, timbales and all that stuff.
You can play an orchestra with your fingers.
Cooper: Have you heard Chris Burke’s band?
Jones: Yeah, they featured it on Life Goes On, I think.
I’ve got to go back and find my copies of that show.
Music’s ability to tap into our emotions and our intellect
is powerful stuff. It can turn people’s lives around.
Cooper: Just as you’re doing.
Jones: Oh, we’re having an absolute ball! You’ll be hearing about our Middle East project soon. It’s dedicated to
the Arab Spring. It’s called Bokra, which means “tomorrow” in Arabic. We’re doing it online, and it’s going to
be unbelievable. See, the Middle East has got the revolution going, but it doesn’t have a plan. Most of the people
I met out there said to me, “I’d rather die than live like
we were living.” It’s amazing how common that feeling
is. It’s all over the Middle East. I’ve been going over
there for 50 to 60 years.
Cooper: If it weren’t for the recent advancements in
technology, the uprisings wouldn’t have been as widely
known, or anywhere near as effective.
Jones: China’s scared to death of the Internet because
you can’t control it. You can’t control individual
communication.
Cooper: I’ve interviewed a lot of people, politicians,
celebrities, movers and shakers in the world. I’ve never
talked to anybody who has accomplished quite as much
you have. And I’ve met some really incredible people.
You have to get somebody working on your movie.
Jones: We’ve been talking about it for a few years, and
my sister-in-law reminds me about it all the time. I feel
like I’m just getting started.
Cooper: You should capture your story while you’re still
so active and your mind is still so creative. You need
somebody to shadow you and jot down all those unique
moments. I’ve been trying to write books myself, and
I’ve told people around me, “Ask me about Za Za
Gabor, Bob Dole, ask me about Richard Pryor—”
Jones: Richard was a maniac, but I loved him.
Cooper: I only met him after he got multiple sclerosis.
Jones: We had a lot of fun together. I saw him and Bill
Cosby when they first started. Lennie Bruce and I used
to hang out together, too. Bruce was that same kind of
revolutionary comic.
Cooper: If I were in the film business I’d want to work
with you and make this film.
Jones: Chet, you never know what will happen.
Cooper: I know you’ll keep going, right up until the end.
Jones: Bop until you drop. (laughs)
quincyjones.com
ABILITY 43
s executive director of the Global Down
Syndrome Foundation (GDSF), Michelle Sie Whitten is
dedicated to promoting research of a common birth
defect that has touched her family. She recently sat
down with ABILITY’s David Radcliff to discuss the
aims of her foundation, and the role Down syndrome
plays in both her work and home lives.
David Radcliff: How would you explain the work you do
at the foundation?
Michelle Sie Whitten: We’re unique in our ability to fill
a void of information about Down syndrome. Historically,
there have been good parent-outreach organizations, but
there hasn’t been a nonprofit that specifically treats
research and medical care as core competencies. People
with Down syndrome now live into their 60s, so there’s
a significant need to revisit the research and medical care.
Radcliff: You got involved in this cause because it
directly impacts someone in your family.
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Whitten: That’s almost always the case, isn’t it?
My first child was born with Down syndrome in 2003.
At 19 weeks into my pregnancy, I got the terrible prenatal diagnosis, and later I had the day-to-day experience of raising a child with intellectual and developmental challenges. I set out trying to find whatever
information was available. I wanted to learn how I
could give my daughter every opportunity.
Radcliff: How much did you know about Down syndrome before the diagnosis?
Whitten: Nothing. In fact, I had never met anyone who
had a disability. Looking back, I wonder whether that
was because people with disabilities had been segregated at the time, or because that was just a reality of
where I went to school.
From a young age, I’ve been passionate about correcting
discrimination and fighting inequality in areas of gender,
Photos by Nancy Villere - CrushPhotoStudios.com
sexual orientation and cultural bias. Having a child with
Down syndrome, in a strange way, expanded my interest
in human and civil rights to an even greater degree.
sure to get him or her properly examined. The good
news is that 99 percent of these heart conditions can be
successfully treated.
Radcliff: What would you hope to convey to other parents
who have recently had a child with the condition?
Parents should also check out their child’s hearing. Kids
with Down syndrome can experience significant hearing
loss or what’s called “blue ear,” so it’s recommended that
these kids get their hearing tested frequently. A failure to
pick up on a hearing problem in its early stages can affect
the clarity of the child’s speech or even his or her ability
to speak.
Whitten: I think the first thing to realize is that nobody
can tell you what your experience will be. And you won’t
know, until you go through it, how you’ll feel or function
as a parent. By and large, people with Down syndrome
are much more alike than they are different. But there are
differences, especially in the first few years of life, that
do need to be addressed with therapy and proper medical
care.
Radcliff: What are some of those early medical needs?
Whitten: Approximately 50 percent of kids with Down
syndrome are born with a congenital heart problem. If
your child falls into this category, you’ll want to make
Radcliff: It could also inhibit socialization.
Whitten: Exactly. So those are two examples of medical
needs that parents should know about, and there’s a
whole list of topics available from the American Association of Pediatrics, and then a more detailed list offered by
the Down Syndrome Medical Interest Research Group.
At the Linda Crnic Institute for Down Syndrome in
ABILITY 45
Denver, we’re working on a wonderful toolkit of
information that we’ll roll out to professionals. That
way it won’t be completely incumbent on parents to
figure out everything that is needed for a child.
People with Down syndrome are more like us than they
are different, but they do have a unique set of challenges
and a unique set of gifts. It is very important for a new
parent to enjoy their baby, but also to address his or her
medical issues. Though parents might feel overwhelmed, finding the right nurse or doctor can set a
child on a trajectory towards successfully reaching his
or her full potential.
Radcliff: As is true in the process of raising any child,
there are all kinds of factors that might come into the
picture that parents can’t foresee.
Whitten: Exactly. In the case of my daughter, for example, we were told by certain professionals that kids with
Down syndrome don’t need speech therapy until they’re
three years old. Then, when our daughter was about
three, we discovered from another very reliable source,
that you’re generally supposed to start a child with
Down syndrome on speech therapy at 18 months. We
felt that we had lost out a little bit on our daughter’s
time and trajectory.
Often parents of children with Down syndrome tell us
of strange prescriptions a doctor or therapist has given
them. We’ve been quite surprised and, in some cases,
shocked. For instance, some parents are instructed to
hold their baby or feed the child a certain way that can
actually be harmful. Unfortunately, consistent, up-todate information about how to care for a child, an adolescent or an adult with Down syndrome doesn’t exist.
There were materials published in the ’80s, but we’re
dealing with a different reality today. The research
needs to be updated and disseminated both to professionals and to parents. Professionals are clearly not getting enough data.
Radcliff: Do you think this lack of education has to do
with the notion that, for certain disabilities, the expectations are already diminished?
Whitten: I think some people, even from within the
medical profession, feel a family that keeps a baby with
a prenatal Down syndrome diagnosis should bear all the
responsibilities associated with the condition. It’s as if
they’re saying: “You made your bed. Now lie in it.”
With accurate information and research, more can be done
to improve the health, lifespan and even the cognitive
functioning of people with Down syndrome.
Since the human- and civil-rights movements of the
’60s and ’70s, there has, thankfully, been a generational
shift as people have grown up alongside our children
and have come to see them as people with dignity who
deserve rights and medical care.
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ABILITY
Radcliff: It sounds like your primary objective is to get
information out to families.
Whitten: We’re here for the professionals as much as for
anybody. Without funding for research—whether it’s
research done by the National Institutes of Health or the
State Department of Education—it’s very difficult for us
to disseminate accurate information. So we take every
piece of information that we have on Down syndrome,
and attempt to reach valid and evidence-based conclusions that we can distribute to society, the press, parents
and professionals.
There are people who say 50 percent of our children
will experience an early onset of Alzheimer’s disease in
their thirties and forties. There are some who say 100
percent will experience this, and there are some who say
less. What is the reality? Clearly research could demystify this. The Down syndrome community currently
lacks patient registries, databases and biobanks that
would aid in biological research.
The benefit of being last to the table in this regard, is
that we can look at those facilities that already exist and
adopt their best practices. We can really make sure we
are protecting and empowering people with Down syndrome and their families. Not all registries, databases
and biobanks do that. There are cases in which the science may eclipse the people being discussed, and we’d
rather not have that.
Radcliff: What are some of the myths about Down
syndrome?
Whitten: One of the most pervasive is that people who
have Down syndrome can’t learn. You often hear,
“Well, you know, she’ll never get beyond the mental
ability of a five-year-old or an eight-year-old.”
Radcliff: That’s right in line with diminished expectations.
Whitten: Yes, it is. Sometimes the expectation is that
this person shouldn’t even be given the right to live.
Families who institutionalized their children were told,
“Your kid is not going to be able to talk, read, walk or
do any sports.” Clearly all of those things were false,
and it’s hard not to shed a river of tears for those who
are now gone. We can’t get them back. And they were
so abused and so neglected during their life times. Even
today, there’s a residue of that experience, as well as
lingering uncertainty about what people with Down
syndrome can actually accomplish.
When we held the first-ever national poll on the topic of
how mainstream Americans view people with Down
syndrome, we found the perception was overwhelmingly
positive. I think that’s a result of Ted Kennedy and Tom
Harkin, and all the people who really went to bat for the
Individuals with Disability Education Act and the Americans with Disability Act. You see the fruits of their labor
in our poll today. More than 80 percent of Americans
strongly believe that people with Down syndrome have
the right to live independently, get married and have
jobs. In the 1960s, people would have said that people
with Down syndrome should not be allowed in public
places. So we’ve witnessed a huge paradigm change.
Radcliff: But I imagine there’s still plenty of work to
be done.
Whitten: Absolutely. One of the questions in our poll
was: “Should people with Down syndrome have the
right to have children?” The results were interesting:
People who knew people with Down syndrome said,
“Yes, people with Down syndrome should have the
same rights as the rest of us.” But many of those same
people responded, “No” or “I don’t know” to the question of whether people with Down syndrome should be
able to raise children. In contrast to this finding, respondents who didn’t know a person with Down syndrome
responded: “Yeah, of course!” to the question about
raising a child.
It’s troubling to me, as a parent of a child with Down
syndrome, what something like that statistic suggests. If
a person with Down syndrome isn’t capable of taking
care of a child, how does that look to the broader community? Does that suggest this person is not capable, in
general? How do we push the envelope in a safe way, as
has been done over the last few decades, to a point
where we can prove low expectations are, in fact,
exceeded again and again and again?
The central issue is that we just don’t have the research.
We’d love for the support behind Down syndrome to
match that of autism and other intellectual and developmental disabilities. These groups have benefited from
great studies about how their kids learn. In respect to
Down syndrome research, the data is generally what is
called “n of 1s,” meaning they’re drawn from a study of
one person at a time. In these cases, the data shows,
“Oh, Isabel can read,” and then, “Oh, Johnny can read at
a first grade level.” It’s all these singular—
Radcliff: There’s no way to draw any kind of correlation
or relationship?
Whitten: No. And it’s not being shown exactly why
they’re able to learn. That’s the sort of information that
could help create a toolkit for the teacher who, God
bless him or her, is in the public schools and facing a
poor teacher-student ratio. Over the next couple of
decades, the 10 percent of students who require Individualized Education Programs (IEPs) will move closer to
15 percent. We need to help them. We need to have
research. We need the research community and the medical community to see our kids with Down syndrome as
equal to others and worthy of the investment. We need
to take the results of that research and medical care, and
feed it to parents and medical students and teachers.
On the road, Whitten stays connected
to her Denver-based foundation.
That would be good for everybody.
Radcliff: I want to go deeper into a subject that you
brought up a little bit earlier: the “right to life” debate.
I don’t want to get too political about it, but I don’t
think that you and I can have this conversation and not
bring up the topic.
Whitten: That’s a good point.
Radcliff: You are a parent who had to make a challenging decision, and I assume some people encouraged you
towards one choice or the other. It seems that you’re
very happy and comfortable with the decision you made.
Whitten: Republicans and Democrats alike have kids
with Down syndrome. People who are pro-life or prochoice have kids with Down syndrome. Our organization is like Switzerland—meaning neutral—in that
respect. We don’t touch the issue. From a personal perspective, however, I’m not shy—and maybe I should
be—about saying I’m pro-choice. I’ve always been prowomen’s health and pro-family health, but my own
choice was to keep my daughter. Today it seems ridiculous to speak of the situation in those terms: My daughter is just my daughter, and she’s fabulous.
But, yes, there was a decision-making period that was
challenging. I was catapulted into it when a blood test
showed that I had a one-in-nine chance of having a child
with Down syndrome. When I went to see an amnio
doctor, I was shocked because they didn’t offer me any
genetic counseling, and they should have. In fact, I
found there was an incredible bias towards termination.
ABILITY 47
At the doctor, I saw a homemade video that basically
said, “There’s a chance your baby is going to terminate
naturally in utero. There’s a chance your baby will die
before the age of one. And there’s a chance your baby
will die before the age of three.” Percentages were
given for all of these possibilities. So this video gave
me the impression there was a good chance that my
child, who is eight years old today, was going to die
before the age of three. And then a list of potential
medical problems went flying across the screen.
When the video ended, the genetic counselor came in
and said, “Please don’t cry. Roughly 80 percent to 90
percent of moms who find out their babies have Down
syndrome choose to terminate. You can terminate,
too.” She gave me a book of photography filled with
pictures of people who chose to take photos with their
fetuses as a way of feeling closure on termination. I
could certainly understand having these photos taken if
you’re the mother of a stillborn child. But at 18 weeks
pregnant, I was like, Are you crazy? Are you sick? Just
the idea of it!
When I went to get my amnio, I realized within two seconds that the voice on the video was my doctor’s voice.
I had been watching a video that he had made! That
video didn’t give me any information about Mile High
Down Syndrome Association, our local outreach group.
So clearly the message was—
Radcliff: Skewed.
Whitten: Yes. Later I read some research done by a man
pursuing a master’s in public policy at the Kennedy
School at Harvard. He did a wonderful survey that showed
the majority of medical students and doctors surveyed felt
ill-equipped to deliver a Down syndrome diagnosis, yet
the majority of them also admitted confidentially and
anonymously that they would advise patients to terminate the pregnancy.
Are these bad people? No, they’re just not being provided with the materials they need to give an informed prenatal and postnatal assessment.
Radcliff: If all they know is the range of potential problems of life with Down syndrome, it would be natural for
them to offer biased advice.
Whitten: Right. I think it’s also natural for doctors and
professionals to resist questions or pressure from parent
groups. That’s why building the Linda Crnic Institute,
which is the first academic home for this kind of study,
is important. It’s a place where academicians, scientists
and medical professionals can come together, in a professional and thoughtful way, to create information.
This is important for professionals because it helps them
feel safer and more confident that their information is
accurate and unbiased.
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Radcliff: The more examples that are propagated of
someone with a disability living a happy, productive
life, the more likely it is that other families can make
choices that take into account the positives along with
the potential problems.
Whitten: Absolutely. I don’t think any parents have
ever made a snap decision to institutionalize their
child. I think professionals had a profound influence
on these parents’ choices—and their children’s fates.
In the 1980s, people with intellectual and developmental disabilities—Down syndrome being a large part of
that demographic—were institutionalized at a very
young age. They were neglected and abused and
forced to undergo sterilization. It was horrible.
During that same period, the medical community made
a commitment not to give life-saving procedures to
people with Down syndrome. So today I can introduce
you to several beautiful people who are in their thirties
and forties, who are going to die in the next few years,
because they weren’t given a heart operation 30 or 40
years ago—a heart operation that cannot be performed
now. These people are dropping off the face of the earth
through no fault of their own.
Radcliff: Wow. It’s as if they have bombs inside of them.
Whitten: Yes. And it’s just horrible to know the reason
they’re not going to live longer is because some person
decided that they weren’t worthy of life-saving procedures. Some doctors had even categorized the act of giving milk to a baby as a life-saving procedure. This
resulted in doctors starving babies with Down syndrome
to death in hospitals. There are photos of nurses trying
to knock down doors to feed these babies.
Radcliff: Unbelievable.
Whitten: In the 1980s, all of the state governors got
together and signed legislation to prohibit denial of milk
to our babies, because it had previously been deemed as
a life-saving procedure. I’m sure this same horrible
denial of life happened to people with other developmental disabilities, as well. We hope our work within
the area of Down syndrome has an effect on this whole
field, but we need to start to recapture what has been
lost for people with Down syndrome over the last
decade. Once we get into this as a human- and civilrights issue, I think the end result will help everybody.
Radcliff: How much awareness of her disability does
your daughter have today?
Whitten: None. It’s very interesting. My husband and I
have decided we will answer those “Am I different?
Why am I different? What is Down syndrome?” questions when our daughter chooses to ask—and she is
absolutely capable of asking.
Photos by Nancy Villere - CrushPhotoStudios.com
David Radcliff and Michelle Sie Whitten having a
quiet chat at a restaurant in Beverly Hills, CA.
Obviously, as I’m running the Global Down Syndrome
Foundation, you’ll often hear the term “Down syndrome” in my household. But we never talk about our
kids in front of our kids, as a rule. If, for example, I
want to share a story with a co-worker about my daughter, I always ask my daughter for permission. Most of
the time she says “yes,” and sometimes she says “no.”
But that’s the general philosophy in our household with
any of our children.
My son, who is five, sometimes asks me questions like,
“People with Down syndrome can’t speak, right?” And
I’ll say, “Of course they can speak, honey. Why do you
ask that?” So then we talk about what it means to speak.
My son knows there is a difference between someone
who has Down syndrome and someone who doesn’t, but
he also knows it’s not a difference we talk about in
terms of that person. My son’s best friend is South
Asian. I’ve told my son, “You don’t talk about this kid
as ‘the boy with dark skin,’ right? And you don’t talk
about Mommy as ‘the Asian chick.’ ”
[laughter]
I’ve talked with a lot of older parents about how they
address Down syndrome with their children. Some parents tell their kids about the condition right away. Some
wait until their child is an adult. In several cases, the
question has never been raised or answered.
Radcliff: When I’m walking down the street on my
crutches, it’s usually the little kids who are the first to
ask questions about my cerebral palsy. If they ask, I
tell them what my condition is. But it’s usually their
mothers who are quick to say, “Don’t ask that question.” The mothers immediately apologize to me,
which only creates another level of discomfort that
wouldn’t exist if the kids had been allowed to learn
and explore.
Whitten: That’s what has been really powerful about
our information gathering. I once co-taught a class at
the University of Denver for three hours. Twenty-eight
students in the class were getting their master’s degrees
in education. They were all going to become teachers,
but only two were going to become special-education
teachers. And by the end of my three-hour lesson, I
asked the class, “How many of you believe having a
child with Down syndrome in a class benefits all of the
other children in that class?” All of the students raised
their hands. But then when I asked, “How many of you
think the parent of the child sitting next to that child
believes the same thing?” Nobody in the class raised
their hands.
Radcliff: Wow.
Whitten: That’s a problem. And it suggests the people in
my class were anointing themselves as saints and saviors. I think society has gone through an amazing
change, and we do benefit from the fruits of the labor of
the ’60s and ’70s, but we haven’t yet recaptured that
sort of momentum. The story hasn’t been told and the
right kind of information hasn’t been given to the professionals. It’s our job to ensure that happens.
Radcliff: Otherwise people are likely to get locked into
their own modes of working with disabilities.
Whitten: Right. So we’re really hoping to influence how
teachers perceive these students. If you think no one but
you values a certain group of people, that suggests you
may have a bit of a savior-saint complex.
Radcliff: It’s well-intentioned, however.
Whitten: It is.
Radcliff: What is the general response you get when you
ABILITY 49
tell people about the work you do and why it’s important?
Whitten: The response varies depending on the community I’m addressing. If I’m talking to people in the
Down syndrome community, or in the field of intellectual and developmental disabilities, they get it and it’s
wonderful. So many collaborations have percolated on
different fronts because of that sort of energy. If I’m
talking to someone who is outside of that community,
however, it depends. There are people who just are not
comfortable with differences, and we may never convert
them into people who are interested in our work. But
that’s true for every kind of labor of love, whether or not
it involves a medical condition.
Radcliff: Or in respect to any minority group, in any
sense. There will always be outliers who are indifferent
to catching up.
Whitten: Or they don’t care or they don’t have the bandwidth or it’s not a priority to them. We are only given
one life to live and time is short, so finding what you’re
passionate about is so important. People who want better lives for people with Down syndrome, people who
want better lives for people with intellectual and developmental disabilities, and people who believe in human
and civil rights for everybody are really our sweet spot.
If you have any of those interests, then how can you not
be interested in and supportive of our work?
Radcliff: If your aim is to engage empathetic people, I’d
like to believe that’s a large target audience.
Whitten: Absolutely. At our organization, rather than
frame the issue as one of “disabilities,” we use the
descriptor “differently abled.” We think that’s a nicer
way to describe people. Eventually we’ll launch this
wonderful website with a section about words and language. There’s been a big movement within the Down
syndrome community to use “people-first” language,
and I understand it, even though, grammatically, it’s a
little odd.
Radcliff: It’s sometimes a challenge to write that way.
We use people-first language in the magazine.
Whitten: I understand the reason for it. There’s a whole
generation of people who still say “Down babies,”
“Down kids” and “Down families.” I just think it’s
always important to consider the source. If there’s an
article about Down syndrome in the newspaper, for
example, and it’s fabulous, it’s great, it’s positive, it’s
everything you want, that editor might still receive an
outpouring of mail from angry people beating up that
newspaper for not using people-first language.
Radcliff: And that misses the point.
Whitten: Yes. Consider the source. Is the overall effect
of the piece a positive one? Use these moments as
50
ABILITY
opportunities to educate, not to beat somebody up. If
you make a choice to berate that person and that organization, you might lose their support forever. This is
a society in which there is free speech, and there are
plenty of opportunities to educate. It took me two
years before I got accustomed to using people-first
language, and we’re going to give a newspaper report
two seconds?
Radcliff: I used to refer to myself as “disabled” all the
time. It didn’t even occur to me what that suggested,
until it was explained. Now I get it, and see the value in
the person-first language.
Whitten: I had that same sort of ah-ha moment in a business class in graduate school. The teacher was lecturing
about a business manager and eventually used the pronoun “she.” I realized that I had been envisioning a man
in my head, the whole time. That’s when I was first
ignited to the power of language, which is so amazing.
Radcliff: How has your relationship with your daughter,
paired with the work you’ve done for the Down syndrome
community, influenced your worldview?
Whitten: I’m the fourth of five children in an immigrant
family: Dad’s from China, and Mom’s from Italy. There
was always a heavy emphasis on education and achievement in my family, and I’m kind of a type-A personality.
But today I’m much more concerned about my daughter
and my son finding their way and being happy, than I am
with a score on a piece of paper.
Now, it could be that having any child would have propelled me to make his or her happiness and health my priority. But I think the fact that my daughter is challenged
in certain intellectual pursuits has made me a better mom
than I otherwise would have been. I think I might have
been more aggressive about academics with my children,
if it had not been for my daughter’s challenges.
I’ve always had a lot of patience with kids, and I’m a
much more patient person, in general, when interacting
both with kids and adults who have Down syndrome.
But I remain impatient in my desire for things to be better and more fair. On the home front, I feel my experiences make me a better wife to my husband, as well.
My daughter has opened my eyes to a whole group of
people that, to many of us, almost don’t exist. I had
thought I was a worldly, educated person with a broad
field of friends and colleagues. But there’s this huge
population—arguably the largest minority in the United
States—that had for so long been invisible to me. Raising my daughter has made me a much better person.
She’s ignited my life and opened my eyes.
globaldown.org
The ABILITY Build program
outreaches to volunteers
with disabilities to help build
accessible homes for low
income families. We are currently seeking corporations,
organizations and churches
to sponsor more homes. This
award-winning program
builds homes and awareness, changing the lives of
everyone involved.
abilitybuild.org
[email protected]
abilityawareness.org
ABILITY 51
“Kerry wanted to come in and get some tone and
strength to delay the onset of what was happening, as
much as he could,” Ferrell said. “We worked a lot with
posture, as that’s one of the problems he and others with
the disease tend to have. When muscles are toned, they
hold you in position. When posture is poor, then it
affects breathing, which is bad for heart and blood distribution, so all kinds of challenges can come into play.”
Proper nutrition is also a key part of health rejuvenation,
said Westfall, who began his strict strength-building regimen in 2004 by adopting a healthier diet.
“When you’re sedentary or don’t have the ability to
exercise, weight gain becomes an even bigger issue,”
Ferrell said. “You can’t burn as many calories, so you
really have to watch what you eat.”
erry Westfall contacted Ed Ferrell
with what seemed a simple request. He wanted Ferrell
to become his personal trainer.
The proposal wasn’t out of the ordinary. Ferrell worked at
a fitness gym in Southern California and trained clients
for a living. But Westfall’s situation was complicated:
At age 16, he had been diagnosed with the rare neuromuscular disease Friedreich’s ataxia, a progressive genetic disorder that causes movement problems and damage
to the nervous system. According to the National Institute
of Neurological Disorders and Stroke, the disease leads to
degenerative-muscle coordination that can also cause,
among others issues, heart and spine problems. About
one in every 50,000 people in the United States inherits
Friedreich’s ataxia.
Ferrell accepted the challenge of training Westfall, who
happened to be at a critical moment in his life. After having dealt with his condition for 12 years, he’d hit a low
point. He’d recently been laid off from his position as a
software engineer at Microsoft, and faced the stress of
feeling his disease worsen.
“I started going to the gym because I could feel myself
getting weaker,” said Westfall, who began lifting
weights in 1998. “ I was going maybe three or four
times a week and working with Ed. We clicked right
away. He used to work for Microsoft, also, and he had a
unique way of explaining exercises and muscle use.”
Knowing that his new client was a wheelchair user, Ferrell was able to tailor resistance workouts to Westfall’s
abilities and needs.
52
ABILITY
Once he committed to a disciplined routine of rigorous
exercise and sensible eating, he began to notice positive
results that were also evident to others.
“Every time I went to the gym, people would stop in their
tracks to watch me work out,” he said. “Someone would
often approach me afterwards, just to tell me how inspiring I was to them.”
Motivated by his own positive development, Westfall
began to realize that others with neurological conditions
could take better control of their lives, if presented with
the right information. He began to discuss with Ferrell the
possibility of developing a workout DVD that would
showcase their insights.
“Over the course of his own workout experience, Kerry
saw a lot of progress and felt really good about it,” Ferrell said. “I think that’s where he got the idea of doing
the DVD. He thought, This is great, this is working for
me, and everybody should be doing it—not just people
who have a disability.”
After trainer and client outlined their goals for making the
project, Westfall enthusiastically set about convincing his
team of doctors to contribute their expertise to it. He even
hired a professional film crew.
The resulting team effort became the workout DVD
Commit to Your Health on which neurologist C.R.
Smith, MD, discusses how a fitness program promotes
rehabilitation of muscular neurons; nutritionist Edward
F. Group, III, MD, walks the viewer through meal planning; and David Mitzner, MD, sheds light on osteoporosis and heart maintenance.
Proceeds from the DVD go to the Westfall Foundation,
a 501(c)(3) tax-deductible organization the filmmaker
established to help others acquire the tools needed to
enhance and prolong their lives.
A lot of people don’t grasp the benefits a program of
this nature could offer someone with a neurological disease, Westfall said. “If someone has a condition, it’s not
the finish line. If anything, it’s a call for them to do
more.”
Though he’s upbeat about his health these days, he
admits to having struggled with depression shortly after
his diagnosis. That sense of futility, Westfall’s doctors
say, is not uncommon among those battling Friedreich’s
ataxia.
“Many individuals become angry and frustrated,” Smith
says during a segment of Commit to Your Health. “They
get angry because the disease has robbed them of their
independence, and they get frustrated because doctors
can’t always give them relief. People around them don’t
really understand what they’re going through.”
Westfall, who says his outlook is improved considerably
by regular exercise and a healthy diet, now has higher
hopes for the days ahead. “I’m finding all sorts of health
benefits from my exercises,” he said. “Exercise applies
improves everything I do.”
Ferrell says that, for many people interested in
improving their health, the biggest challenge is arriving at the right exercise program.
“Sometimes there are too many alternatives for people,”
Ferrell said. “As a result, they get confused and ultimately don’t do anything.”
He says that some exercisers will benefit from the social
aspects of a gym membership, while others will do well
with workout machines at home. Ferrell, although
admittedly biased, asserts that one-on-one training has
superior benefits:
“The workout you get from a personal trainer is
focused, private and offers exercises tailored to your
needs,” he said. “So you accomplish your goals and
make progress while being held accountable.” But at the
end of the day, the bottom line is exercise and eat well.
Westfall says he hopes his DVD inspires others with diseases or disabilities to awaken to their own possibilities
and take control of their health.
“I’m in a wheelchair, so it’s not easy for me to do any of
the exercises,” he said, “but I do them. If I can do them,
anyone can.”
by Josh Pate
curefa.org
ABILITY 53
way of life was too different from theirs for them to get
what he really needed.
n an ideal summer afternoon in a quaint
Bethesda, MD, shopping district, one lone
voice stood out from the hum of whooshing
breezes, passing cars and chattering teens.
“Change? Change? Anybody? Change?” A man walked
the street holding a tattered Coke cup, seeking a few
coins or a spare dollar from anyone willing to give.
Granted, it isn’t uncommon to hear such requests, but on
this particular day and with this particular man, something seemed different. I couldn’t help but watch as he
approached from almost a block away. As he got closer,
he transformed from a nondescript figure to a middleaged man with medium build, olive skin, brown hair,
Southern accent, and eyes that revealed the change he
needed had little to do with money.
People passed him without acknowledgement, paying
more attention to “Summer Close-Out” signs in windows.
Perhaps they were so accustomed to hearing his voice
that it no longer stood out. Perhaps there was a discomfort in the separation of social class that he represented.
Perhaps they felt that, as individuals, their actions couldn’t provide all the change he required. Or perhaps his
54
ABILITY
A growing number of organizations, boards, and individuals within the disability movement are also on the brink
of change, and they’re seeking the partnership of young
leaders. While social inclusion is a positive first step,
many younger people see the existent paths as dead ends.
These emerging activists are busy creating fresh visions
for where and how the disability rights movement should
proceed, and they’re reaching out for guidance, recommendations, and support from those veterans who have
wrought social change over the decades.
Earlier this summer, I served on a team that worked with
disability rights leaders of Uganda. After a long day of
discussion and presentations arranged by professionals, I
asked a 16-year-old girl, who had attended the day’s
events, what she thought.
“I don’t understand why they’re doing what they’re
doing,” she said, as her eyes met mine. “It’s old. It’s
outdated, and it applies to no one other than those in that
circle.” She went on to say that she thought that the
leaders were merely paying lip-service to the ‘leaders of
tomorrow,’ yet little of what they said seemed relevant
to people her age. Finally, she concluded:
“What they don’t realize is that we are the leaders of
today, and if they don’t trust and support what we are
doing, there will be no tomorrow for us to lead.”
I nodded. She was right.
It’s understandable that a Ugandan teen might be more
acutely aware of time than an American teen. In that
East African country, youth usually ends in the late
teens, due to marriage or pregnancy, and the life
expectancy—according to the nation’s ministry of
health—is somewhere in the late 40s.
It’s understandable, as well, that young people in both
the US and Uganda might grow impatient as disability
rights leaders in both countries shift priorities, seeking new goals and new
methods by which to attain them.
Those who led the disability rights
movement in the States in the ‘60s and
‘70s created an innovative and necessary niche. They redefined justice and
reshaped social norms regarding disability. They also took hold of the
power that, for far too long, had been
deserved but out of reach. Today, these
leaders tell us they are in search of
members of the next generation who
can carry the torch and build upon the
work that has been done.
Young people seem to be willing to shoulder the responsibility. But they want those from whom they take the
torch to understand that once that it’s handed off, they
may choose a different course.
“Activists describe the differences in social conditions,
and feminists’ responses to them as waves,” said Stacey
Milbern, a blogger who identifies as a woman of color
with a disability.
“The first wave (voting-rights and property-rights work
done in the early 1900s) is very different from the second
wave (access to birth control and workplace rights sought
in the ‘60s and ‘70s), and both are even more different
from the current wave.
“Leaders of the disability rights movement seem to want
to stay in one wave. But the needs of people with disabilities have changed, and if we want to remain relevant, our
vision and understanding of change must evolve.”
In one of his signature books, Hope Dies Last, historian
Studs Terkel recorded the insights shared by civil-rights
activist Mel Leventhal. “We need young people to do
more of what young people did in the ‘60s: Keep America honest,” he told Terkel. “We need to make sure they
learn their history. It’s important to stand back and see
the whole world is in a downswing when it comes to
human rights... But I’m not giving up. I can’t afford to.”
Leventhal’s statement is directly applicable to the future
of the disability rights movement. First, we do need to
keep America honest. Within that honesty exists the
recognition that sometimes change is not only for the
better, but is also necessary and, perhaps, even time-sensitive. Many of the changes we seek are ready to be
implemented through new leadership. To truly implement change, however, we have to make adjustments to
the tried-and-true methods and meld with the visions of
those who will responsible for carrying them out over
the next 40 years.
Second, we need to make sure young people learn disability history and culture. It’s tough to
know where we’re going, if we don’t
know where we’ve been. What we know
serves as the basis for what will be. To
make this possible, intergenerational
communication is critical.
“As young people define and navigate
their way in the next wave, experienced leaders can share their wisdom,
mentor younger leaders, and most of
all, communicate trust,” said disability
rights activist Laurie Powers, who is
the associate dean for research and
director of Regional Research, Institute
for Human Services at Portland State University. She
added that more adult leaders must be willing to be followers, as young people put forth their vision of disability culture and inclusion in the broader humanrights agenda.
A change is coming, and we now have a prime opportunity to unite generations, merge visions and strengthen
our community. Perhaps Leventhal said it best: “Everything meaningful that’s ever happened in the world—
any change, any improvement—comes about because of
optimism. The pessimists don’t get anything done.
They’re naysayers. You have to see the potential for
change. And you’ve got to see it not in terms of the
moment, but in terms of the long haul.”
The challenges before us will require us to find a way
to make that long haul together. Social change for the
rights of the disability community—rights that make
us equal world citizens with equal responsibilities—is
something to which we are all entitled. It’s also a purpose towards which we must all work. This universal
goal is important. At the same time, the diverse methods by which we reach this goal, may be divided
along generational lines. As we ask those outside our
community to grasp change, we must do the same.
by Betsy Valnes
Betsy is an active member of the youth disability rights
movement in the United States and abroad.
newvoice-newvision.com
ABILITY 55
ome 25 years ago, when I was in my late teens, I
developed an irrational fear of the police. I kept
thinking that if I spat on the sidewalk, I would
be arrested for littering.
I knew the thought was bizarre, or at least part of me
did. But that did not stop me from manifesting even
more wacky thoughts. Stepping on the grass would lead
me to be arrested for trespassing, and so forth.
As someone who’d already had an anxiety attack by
age five or six—possibly as a result of being taken
away from my mother, and going to live with my dad
and stepmom—I believe early trauma made me vulnerable to mental illness.
While these irrational fears passed for a time, they
resurfaced, years down the road, as I experimented with
alcohol. I’d seen a television movie about James Dean,
who seemed to be emotional and complex like me, and
decided acting would be a great career for an unstable
alcoholic. So I moved across country to Hollywood to
attend acting school, which demands one dissect his
own psyche.
The experience awakened my sleeping demons. I realized I’d felt rejected by my real mother when I was
five, and had never gotten the love or nurturing that I
had needed from my father. As I explored these ideas
and beliefs that motivated me, repressed feelings came
pouring out for the entertainment of my acting coach
and fellow students.
Then, a few weeks later, my obsessive-compulsive disorder
56
ABILITY
(OCD) reemerged, stronger than ever, and now with an
added twist: paranoid delusions. I was convinced somebody would put drugs in my food or drinks. I had taken
some recreational drugs in my early twenties, and had
had some bad experiences, especially during a couple of
LSD trips. While I initially had no desire to do drugs, I
ultimately gave into peer pressure.
A few months later, after back-to-back drug trips, I felt
depressed and anxious. I ended up seeing a therapist,
and she reassured me that the drugs were out of my system. If I stayed busy, she said, the difficulty would pass.
She was right. I quit drinking and got new friends.
Unfortunately being on the wagon did not last long. I
still had low self-esteem, and liquor deadened the emotional pain, at least temporarily.
In retrospect, I realize that I wanted to be an actor to get
the attention I had never received as a child. I kept trying to hide my anxiety, as I attempted to break into the
industry. But rejection only intensified my jitters. Take
it from me: If you have thin skin, acting is not for you.
One day, after numerous anxiety attacks, I had a nervous breakdown, and found myself driving from Los
Angeles back to Louisiana. While that in itself is not
noteworthy, this is: I hallucinated the whole way!
Once I had miraculously made it home, the hallucinations went away—but the OCD symptoms did not. I
found myself washing my hands and harassing everyone
by continually asking for reassurance. I even tried to end
my life by inhaling carbon monoxide from my car
exhausts. When that didn’t work, I added one more failure to my resume.
Eventually I saw a doctor in Louisiana who finally said
the magic words: “Maybe you have Obsessive Compulsive Disorder.”
“What the hell is that?” I asked.
She gave me a definition, but I needed to know more, so
I soon found myself looking on the Internet for any clinic that might specialize in this OCD thing. Though I was
very nervous and tried to talk myself out of checking
into a clinic, deep down I knew life was passing me by.
It was raining when I showed up at the OCD house, and I
remember being anxious when I walked in for the first
time. This was just a house, I reasoned; I could leave any
time I wanted.
By this point in my life, I had also developed a fear of
germs and drugs, among other random things. I thought,
for example, that if I walked by a long-haired man—or
past anyone who appeared to be high—I would get high,
too. Desperate to avoid being in that position, I was
always on the lookout for anyone I felt was unsavory in
any way. If I saw someone that I suspected used drugs, I
would quickly turn and walk in the other direction.
“I’m sorry did I bump you?” he asked me. I assured him
that he hadn’t. I felt so bad for him because I knew his
soul was gentle but tortured. He couldn’t escape his own
horrendous thoughts.
A behavioral therapist at the clinic told me I’d be going
downtown the following day to shake hands with the
homeless and the derelicts. The thought of touching
street people, of course, gave me another anxiety attack.
Nevertheless, I ended up going downtown and trying to
shake hands with street people, anyway. But when I
found the anxiety to be too great, I escaped the situation
by telling a passing graduate student that I was a writer,
and asking her to have coffee with me. As we sat there
talking, however, my guilt kicked in. Suddenly, I
thanked the young woman and walked as fast as I could
to the nearest street person, immediately introducing
myself, and shaking his hand without flinching.
Day by day, I continued this process, trying to become
obsessed with getting better, rather than be consumed by
my fears. The other patients did not seem to get healthier, so whatever technique I was using—though perhaps
dangerous, to a degree—was proving effective.
After three months at the clinic, it was time to leave.
Though I was scared to face the outside world, I was at
least 90 percent better than I was before I arrived.
If I did cross paths with such a person, I would immediately wash my nose and hands. I’d wash them over and
over again, and then try to get out of the bathroom without touching anything. This sometimes entailed turning
the faucets off with my feet, or asking someone to open
the door for me so I could exit.
Over the years, my experiences taught me to use my
OCD in a positive way. Although, I still sometimes get
those crazy “what if” thoughts, I now know how to
deal with them.
Whenever I gave in to my various obsessions, they grew
stronger. I remember once eating pizza with someone I
had just met. I bragged about how I exercised all the
time, and she said something like, “If you are such a
health nut, why do you eat pizza? It’s full of chemicals.”
Around the time that I left the clinic, I called comedian
Mel Brooks, and relayed to him what I was going
through. “I see a book in your story,” he said. He had
befriended me years earlier, when he used to see me
sneaking into Fox Studios. “What the heck are you
doing here every day?” he would ask. “And why are
you always wearing the same clothes?”
I asked her over and over what she meant by chemicals.
I pressed her: “You aren’t talking about drugs are you?”
“Of course not,” she said. But I kept asking her the
same question, in some form or another, until my anxiety subsided. The woman wanted to get away from me
as quickly as possible.
There were a lot of people like me in the OCD house,
including a fellow who could not stop flushing the toilet, a guy who kept plugging and unplugging electrical
appliances, and a guy who kept counting his footsteps.
But I believed my compulsion and obsessions were a
million times worse than those of my peers, until my
roommate told me he had nonstop images of raping and
killing people. His therapy involved watching slasher
movies that would desensitize him from such thoughts.
He seemed to go out of his way not to touch anyone.
I was wearing the only suit I had.
I told Mr. Brooks that I was sneaking in to schmooze
the casting directors. He warned me that if he noticed
me, eventually security would, too.
In an effort to use my OCD for something positive, I
wrote a book called Man Interrupted. When one publisher rejected it, I became even more obsessed with
finding another. Once I got the book published, I used
my obsessive personality to get it in stores and onto the
Los Angeles Times bestsellers list for five weeks. Then
my luck got better: I met a director who optioned my
book for a film.
by James Bailey
amazon.com/man-interrupted
ABILITY 57
1 teaspoon dried oregano, preferably Mexican oregano
Salt, preferably kosher salt, to taste
1/2 cup chopped cilantro
4 ounces goat cheese or queso fresco crumbled
s the weather turns cooler, it’s time to savor soup.
A hearty bowl can curb your appetite, says dietician Becky Hand, especially if the soup is brothor veggie-based, which lowers calorie content. Soup is
generally served hot, so you may eat it more slowly, feel
fuller sooner and consume less. And last, but not least,
soup is comfort food that won’t blow your diet. We’ve
picked some favorites recipes for you to enjoy.
PERFECT PUMPKIN SOUP
1 tablespoon olive oil
3 cups chopped yellow bell pepper
1 1/2 cups chopped carrot
1 cup chopped onion
1/2 teaspoon ground ginger
2 garlic cloves, chopped
5 cups fat-free, less-sodium chicken broth, divided
1/4 teaspoon freshly ground black pepper
1 (15-ounce) can salt-free pumpkin puree
2 tablespoons fresh lemon juice
2 tablespoons unsalted pumpkin-seed kernels, toasted
1 tablespoon chopped fresh parsley
Heat oil in a deep pot over medium-high heat. Add bell
pepper, carrot and onion; cook 10 minutes or until tender, stirring occasionally. Add ginger and garlic; sauté 1
minute. Add 3 cups broth and black pepper; bring to a
boil. Cover, reduce heat, and simmer 20 minutes or until
vegetables are tender.
Place one-third of vegetable mixture in a blender.
Remove center piece of blender lid (to allow steam to
escape); secure blender lid on blender. Place a clean
towel over opening to avoid any splashing. Blend until
smooth. Pour into a large bowl. Repeat procedure with
remaining vegetable mixture.
Return puréed vegetable mixture to pot; stir in remaining 2 cups broth and pumpkin. Cook over low heat for
10 minutes or until thoroughly heated, stirring frequently. Remove from heat; stir in juice. Top each serving
with about 1 teaspoon pumpkin seeds and about 1/2 teaspoon parsley. Serve immediately.
BLACK BEAN CHILI
4 15-oz cans organic black beans, with liquid
2 tablespoons canola oil
1 onion, finely chopped
4 large garlic cloves, minced
3 tablespoons mild ground chili
1 tablespoon lightly toasted cumin seeds, ground
1 28-ounce can chopped tomatoes, with juice
2 tablespoons tomato paste dissolved in 1 cup water
2 canned chipotle chiles in adobo, seeded and chopped
58
ABILITY
Heat the oil in a medium nonstick skillet over medium
heat, and add the onion. Cook, stirring often, until the
onion is lightly colored, about 10 minutes. Add the garlic, stir together for about a minute until fragrant, and
add the ground chili and cumin. Cook, stirring, for two
to three minutes, until the mixture begins to stick to the
pan. Add the tomatoes and their juice and oregano, and
salt to taste. Bring to a simmer and cook, stirring often,
until the tomatoes have cooked down and the mixture is
beginning to stick to the pan, about 10 minutes. Stir in
the tomato paste dissolved in water and the chipotles,
and bring back to a simmer. Season with salt to taste and
simmer, stirring often, for 15 minutes, until the mixture
is thick and fragrant.
Stir the tomato mixture into the beans, and bring to a
simmer. Simmer, stirring often, for 30 to 45 minutes.
Taste and adjust salt.
Just before serving, stir in the cilantro. Spoon into
bowls, and garnish each bowl with a generous spoonful
of goat cheese or queso fresco. Serve with corn tortillas
or cornbread.
Note: If you want thicker chili, purée 1 or 2 cups of the
beans in a blender, and return the blitzed beans back to
the pot.
ASIAN CHICKEN NOODLE SOUP
1 (4 pound) whole chicken, cut into pieces
1 large onion, peeled and halved
3 bay leaves
10 whole black peppercorns
2/3 bunch celery
1 pound whole carrots
3 tablespoons chopped lemon grass
1/4 cup chicken-bouillon powder
1 pound carrots, peeled and sliced
1/3 bunch celery
1 (8 ounce) package dry egg noodles
Place chicken covered with water in large pot over high
heat and bring to a boil. Reduce heat, cover and simmer,
skimming fat as needed, 30 minutes.
Place the halved onion, bay leaves, peppercorns, whole
celery, whole carrots and lemon grass in the pot and
simmer, covered 1 hour.
Strain broth and reserve chicken. When chicken is cool
enough to handle, remove skin and cut meat into bitesize pieces.
Return strained stock to pot over high heat, and stir in
chicken base, chopped celery and chopped carrots.
Bring to a boil, then reduce heat, cover and simmer 20
minutes, or until carrots are tender.
Simmer until noodles are cooked, about 10 minutes
more. Stir in chicken and heat through.
MINESTRONE
1 tablespoon olive oil
1/2 cup chopped onion
1/3 cup chopped celery
1 carrot, diced
1 garlic clove, minced
4 cups fat-free, unsalted chicken broth
2 large tomatoes, seeded and chopped
1/2 cup chopped spinach
1 can (16 ounces) canned chickpeas or kidney beans,
drained and rinsed
1/2 cup uncooked small shell pasta
1 small zucchini, diced
2 tablespoons fresh basil, chopped
In a large saucepan, heat the olive oil over medium heat.
Add the onion, celery and carrots and saute until softened, about 5 minutes. Add garlic and continue cooking
for another minute. Stir in broth, tomatoes, spinach,
beans and pasta. Bring to a boil over high heat. Reduce
heat and simmer for 10 minutes. Add zucchini. Cover
and cook for 5 minutes more.
Remove from heat and stir in the basil. Serve immediately.
SPLIT PEA SOUP
1 1/2 cups green split peas
2 teaspoons olive oil, divided
2 cups chopped onion
1 cup diced carrot
1 bay leaf
1 tablespoon minced garlic cloves, divided (about 3 cloves)
1 tablespoon minced fresh rosemary, divided
1 teaspoon paprika
1/4 teaspoon black pepper
1 tablespoon tomato paste
1 tablespoon low-sodium soy sauce
4 cups water
2 cups vegetable stock or 1 (14 1/2-oz) can vegetable broth
1 teaspoon salt
1/4 cup chopped fresh parsley
1/4 cup low-fat sour cream
Sort and wash peas; cover with water to 2 inches above
peas, and set aside. Heat 1 teaspoon oil in a heavy pot
over medium-high heat. Add onion, carrot, and bay leaf;
sauté 5 minutes, stirring frequently. Add 2 teaspoons
garlic, 1 teaspoon rosemary, paprika, and pepper; cook 3
minutes. Add tomato paste and soy sauce; cook until
liquid evaporates, scraping pan to loosen browned bits.
Drain peas. Add peas, 4 cups water, Vegetable Stock,
and salt to onion mixture; bring to a boil. Cover, reduce
heat to medium-low and simmer 1 hour, stirring often.
Discard bay leaf. Place half of soup in blender or food
processor; process until smooth. Pour pureéd soup into a
bowl. Repeat procedure with remaining soup.
Combine 1 teaspoon oil, 1 teaspoon garlic, 2 teaspoons
rosemary, and parsley. Stir parsley mixture into soup.
Spoon soup into bowls; top each with sour cream.
If you use canned broth instead of vegetable stock, don’t
add salt.
HERBED TOMATO SOUP
2 teaspoons olive oil
3 garlic cloves, minced
3 cups fat-free, less-sodium chicken broth
3/4 teaspoon salt
3 (14.5-oz) cans no-salt-added diced tomatoes, undrained
2 cups fresh basil leaves, thinly sliced
Basil leaves (optional)
Heat oil in a large saucepan over medium heat. Add garlic; cook 30 seconds, stirring constantly. Stir in the
broth, salt, and tomatoes; bring to a boil. Reduce heat;
simmer 20 minutes. Stir in basil.
Place half of the soup in a blender; process until smooth.
Pour pureed soup into a bowl, and repeat procedure with
remaining soup. Garnish with basil leaves, if desired.
TUSCAN STEW
1 tablespoon olive oil
1 tablespoon unsalted butter
2 garlic cloves, minced
1 cup chopped carrot (about 3 medium)
1 medium onion, chopped
1 1/2 cups sliced mushrooms (about 6 ounces)
2 cups chopped peeled butternut squash (about 1 3/4 lbs)
2 (15-ounce) cans cannellini beans, rinsed and drained
4 cups fat-free, less-sodium chicken broth
2 cups organic vegetable broth
1 tablespoon Italian seasoning
3 cups cups shredded, cooked chicken breast
2 slices bacon, cooked and crumbled
10 ounces fresh spinach
1/2 teaspoon freshly ground black pepper
1/2 cup (2 oz) grated fresh Parmigiano-Reggiano cheese
Heat oil in a heavy pot over medium-high heat; add butter, stirring until melted. Add onion and next 4 ingredients (through garlic); cook 3 minutes, stirring frequently. Mash 1/4 cup beans with a fork. Add beans, broths,
and Italian seasoning to pan; bring to a boil.
Reduce heat and simmer 10 minutes or until vegetables
are tender, stirring occasionally. Add chicken; cook 2
minutes or until thoroughly heated. Add black pepper
and spinach, stirring occasionally until spinach wilts
(about 3 minutes). Ladle about 2 cups soup into each of
6 bowls; top each serving with 5 teaspoons cheese and
11/2 teaspoons bacon.
ABILITY 59
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3
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8
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15
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51
52
53
ABILITY
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38
41
50
60
37
40
42
28
32
36
39
45
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16
21
25
6
9
19
24
5
55
ACROSS
DOWN
1 African country set to eliminate polio this year
5 “I felt bad that I had no ____ until I met the man with
no feet” (anonymous poem)
8 Rational
10 “I am _____” Will Smith film
13 ____man triathlon
14 Oval shaped item
15 Painter’s medium
17 “Mr Holland’s ____,” film about a man who dreams
of being a composer and whose son is deaf
19 Disease that ravaged Africa that 57 across campaigned against
20 Charlie Chaplin headgear (2 words)
22 Eternally
24 Humor therapist who overcame a serious car accident with a positive outlook (2 words)
27 “The Matrix” hero
29 Certain investment, for short
30 Double bend curve
32 “Friday Night Lights” score
33 Bothers
35 Paralympic sailor in the United States Sailing Team,
____ Whitman
37 Green Day title
40 Literary always
41 Like
42 “Switched at Birth” star who plays a deaf teen, Katie
_____
44 Weight measurement, for short
45 Blood group
47 Emerson, Lake and ____
50 Floating hospital organization bringing global charity to developing nations since 1978 (2 words)
51 TV actress also the International Chairman of the
Juvenile Diabetics Research Foundation (first name)
52 Friend in French
53 What goes around comes around principle
54 Negative word
55 “The Color Purple” star appointed as a goodwill
ambassador for the UN Development Program
1 South African hero for civil rights and freedom (first
name)
2 Joke
3 2004 film about two boys with autism who accomplish the unimaginable, “Miracle ___”
4 “The War of the Worlds” base
5 Over 55s
6 ______ Initiative, non-profit venture dedicated to promoting world peace, founded by Jay Snyder (2 words)
7 Comedian who lost his sister to scleroderma and since
then has put on charity events around the country to
help fight this disease, Bob ____
8 Comic book about a superhero with a physical disability (2 words)
9 The opposite of an aye
11 Naval officer, for short
12 Cry from Homer Simpson
16 Roman 2
18 Customary
20 Football position, for short
21 Famous wizard
23 Manchester’s state
24 ___ Lanka
25 “__ Man”- cartoon character
26 Stubborn one
28 National weight problem that Michelle Obama is
campaigning to change
29 2001 drama where Sean Penn plays a father with
mental problems (3 words)
31 Downed a sub, say
34 Princess Di’s family name
36 Kind of spirit
38 Western omelet ingredient
39 US State, motto: North to the Future
43 Baseball hat
44 Mental ability
46 Guitar great, Jeff ____
48 Light-second, unit in astronomy
49 Austen novel
52 Marketing medium
answers on page 62
ABILITY 61
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P S
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S H O
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A
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M E R
M A
A M I
D A N
ABILITY
N I G E R I
E
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L E G E N D
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S U E Z H
I R A
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A B
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M E R C Y S
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K A R M A
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B
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M I
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ABILITY 63
EVENTS AND CONFERENCES
66
ABILITY
68
ABILITY
E v e n t s
&
C o n f e r e n c e s
ABILITY 69
74
ABILITY
ABILITY 75