Brian Wilson Issue

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E DITOR - IN -C HIEF
Chet Cooper
S R . H EALTH E DITOR
Gillian Friedman, MD
H EALTH E DITORS
Larry Goldstein, MD
Karl Gross, MD
G UEST C ONGRESSMAN
U.S. Rep. Bob Etheridge (D-NC)
S R . E DITOR
Jane Wollman Rusoff
E DITORS
LETTER FROM THE EDITOR — Health and Happiness
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CONGRESSMAN ETHERIDGE — Volunteerism for All
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HEADLINES — AT&T, A&E, Accessible Tent, Fibromyalgia
HUMOR THERAPY— Global Warming
13
EMPLOYMENT — The ADA and People with Hearing Loss
16
GOOGLE — New Accessible Search
18
SHOSHANNAH STERN — Ready for Prime Time
28
FREEDOM FOR LIFE — Accessible Adventure
32
DR. ERNST KATZ — 70th Anniversary of the Jr. Philharmonic
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ABILITY HOUSE — Volunteers with Disabilities Build Home
44
BRIAN WILSON — A Powerful Interview
50
STAGLIN FAMILY VINEYARD — Good Wine & Good Causes
54
SCHIZOAFFECTIVE DISORDER — What You Need to Know
C ONTRIBUTING W RITERS
Sandy Herald
Glenn Lockhart
Rosemarie Rosetti
Peter Ubel, MD
H UMOR E DITORS
Jeff Charlebois
Gene Feldman, JD
The Need for Univ. Design
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Pres. Bush and Katz
6
W EB E DITORS
Paul Kim
Steve Mikailoglu
A RT D IRECTOR
Kristian Olson
G RAPHIC A RT /
I LLUSTRATION
Leah Demeter
Steve Mikailoglu
P HOTOGRAPHY
Steve Eichner
Don Hagopian
Otto Rothschild
Randy Tepper/Showtime
Bob Young
Google’s New Search
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T
E
N
T
S
Aloha to Hawaii’s First ABILITY House
Dahvi Fischer
Eve Hill, JD
Noelle Kelly
Eva Meszaros
Josh Pate
Maya Sabatello, PhD, JD
Romney Snyder
Paul Sterman
Jessica Tappin
ADMINISTRATION COORDINATOR
Jenifer Medramo
DIRECTOR OF BUSINESS AFFAIRS
C
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UNIVERSAL DESIGN — How to Build Your Dream Home
62
BOOK EXCERPT — You’re Stronger Than You Think
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EVENTS AND CONFERENCES
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SUBSCRIPTION PAGE
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Errata: The previous issue’s
interview with Joe Montana
highlighted his hypertension
awareness program Take the
Pressure Off...With Better
Blood Pressure Control.
His new hypertension education program through Novartis
Pharmaceuticals is BP
Success Zone.
ABILITY Magazine is published bimonthly by C.R. Cooper Publishing, 1682 Langley Avenue, Irvine, CA 92614-5633
(ISSN 1062-5321) All Rights Reserved.
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EDITORIAL
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NON-PROFITS
ABILITY Awareness
Habitat for Humanity International
PUBLISHER
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The views expressed in this issue may
not be those of ABILITY Magazine
Library of Congress
Washington D.C. ISSN 1062-5321
© Copyright 2006 ABILITY Magazine
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Dear Readers,
Dr. Peter Ubel—whose latest book is excerpted in this
issue of ABILITY Magazine—is pursuing happiness. Of
course, so are the rest of us—it’s even stated in our
Constitution. Who doesn’t want to be happy? But as a
scientist, Dr. Ubel is not satisfied with happiness as a
metaphysical goal. He wants to know the how and the
why of it. Particularly, how is happiness affected when
people develop a serious health problem or disability?
The answer is surprising to many people—in large part,
happiness isn’t affected.
With health problems and disability, just as with many
other life challenges, humans are remarkable and creative adapters. And for each of us, most of the elements
that affect our mood on a moment-to-moment basis—
eating the foods we like, connecting with our families,
watching our favorite movies and TV programs and
sporting events, laughing at good jokes—are completely
independent of whether our legs or arms or kidneys
function at full capacity. Indeed, some of Dr. Ubel’s
research subjects looked at disability as a positive force
in their lives, an opportunity to refocus themselves on
the things they found really important.
But he also found that the general public is notoriously
bad at recognizing this. People dread developing a disability. They are sure they will be unhappy. Even a few
of the family members of his happiest research subjects—the very people who had witnessed first-hand
that disability did not lead to dreariness—said they
could not imagine wanting to live in their loved one’s
circumstances.
This book gnawed at me, troubled me, proven to be that
pea under the mattress keeping me up at night. Dr. Ubel
has proven with science what most of us in the disability
community have long observed—people have a hard
time understanding something they haven’t experienced.
If some people are so bad at imaging the impact of disability on happiness, are they as bad at imagining the
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impact of disability on work performance? If so, what
does that mean for changing their attitudes about
employing people with disabilities? Treating us equally?
Remembering to include us as volunteers, active community members and friends?
Dr. Ubel acknowledges that our societal tendency for
mis-imagining can have negative implications: “I worry
that it affects how we interact with people with disabilities and leads to stigmatization—that we find ourselves
thinking, they’re just slow, unhappy, grouchy people and
I don’t want to be around them.”
But he has also experienced that for some people, association with someone who has a disability changes their
perspective. He talks about one of his friends, who
developed amyotrophic lateral sclerosis (also called
ALS or Lou Gehrig’s Disease), a universally fatal illness. Early on, his friend noticed people withdrawing
and gently confronted them. In response, many reexamined their behavior and forced themselves to come
to terms with their unconscious reactions.
Similarly, one goal of ABILITY Magazine is to help all
of us confront our assumptions and mis-imaginings, one
story at a time. The more we listen with a new ear—so
to speak—to people’s experiences, the more likely we
are to hear what they’re really saying, not just what we
expect them to tell us.
Sincerely,
Gillian Friedman, MD
Managing Health Editor
Do you have an interesting story from your life?
Do you know someone who has made an impact in your
community? Do you have topics you would like to see in
ABILITY Magazine? Get involved!
[email protected]
Subject: Getting Involved
Target 7 Ad
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consider how some small adjustments in building
style—like having a no-step entrance to a home and
making the hallways and doors wide enough to accommodate a wheelchair—would be easy and inexpensive
to consider for all homes, so that every one of us can
have a home that will serve us well throughout our lifetimes, however our needs might change.
Dear ABILITY Readers,
Each time I travel around my North Carolina district, a
community where I’ve lived nearly all my life, I enjoy a
welcome opportunity to connect with my constituents
and chat with my neighbors about the issues that affect
them on a day-to-day basis. In today’s housing climate,
I often find that one of the most vital concerns raised is
the need for decent housing for everyone. Homeownership is a cornerstone of the American dream, and I support extending this opportunity to as many people as
possible. From opposing cuts in Section 8 vouchers to
supporting efforts to end homelessness, throughout my
congressional career I have advocated that North Carolina’s families—and families across the nation—deserve
safe, affordable housing. I applaud the public, private
and nonprofit efforts that help them obtain this dream.
This month I am pleased to give my time as the honorary project chairman for just such an effort. The nonprofits ABILITY Awareness and Habitat for Humanity
of Johnston County are joining forces to build an accessible home for Selma Smith, a vivacious and talented
woman with quadriplegia who for six years has lived in
a trailer too narrow to accommodate her wheelchair.
Recently I had the opportunity to visit Ms. Smith in her
trailer, a residence that currently requires the strength
of at least two people to carry her wheelchair up the
steps to her front door. The doorways linking the trailer’s small rooms are too narrow to allow her wheelchair
to pass, so she spends her whole day sitting in a small
living room. This vibrant woman ought to live in a residence that she can enter and exit independently. She
ought to have the full use of her home, not just one
room of it. She ought to be able to go across the way to
visit her neighbors and be able to participate in her
community.
I am pleased that this month we are building Ms. Smith
an ABILITY House—an accessible home built entirely
by volunteers, many of whom also have disabilities.
This has been a wonderful opportunity for all of us to
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I am proud to welcome constituents who have disabilities to join us in building this house. So much good can
be accomplished when our communities come together
in volunteer service, and we don’t have a person to
waste. I am glad to see the town of Benson, Habitat for
Humanity and ABILITY Awareness out there affirming
that everyone has a valuable contribution to make. I am
grateful for the generosity of the corporate sponsors
Genworth Financial, Inc. and Wells Fargo Home Mortgage for not only bringing their financial assistance, but
also facilitating a meaningful volunteer opportunity for
their employees. And I applaud ABILITY Magazine for
its ongoing support of the ABILITY House project.
I’d like to challenge communities across the nation to
follow Benson’s example in assuring that everyone has
the opportunity to be both independent and included.
Sincerely,
U.S. Congressman Bob Etheridge
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$100 million program that connects families and communities with technology tools that can improve lives.
The program builds on the AT&T Foundation’s existing
investment in technology for the underserved, which
totals nearly $83 million.
www.ctcnet.org
AT&T FOUNDATION
T
FUNDING ASSISTIVE TECHNOLOGY
he AT&T Foundation, the philanthropic arm of
AT&T Inc., has announced a $1 million grant to
the Community Technology Centers’ Network
(CTCNet), a national network of community
technology centers (CTCs) and other nonprofits that
provides technology access and education to underserved
communities. This grant will provide new technology
resources for people with all types of disabilities.
CTCNet will collaborate with the Alliance for Technology Access (ATA), a national network of communitybased Assistive Technology Resource Centers,
technology developers, community-based organizations
and individuals, to upgrade technology services and
equipment at CTCs nationwide.
CTC staff will receive training on universal design and
assistive technology to help them accommodate multiple learning styles and abilities. The grant will also fund
the purchase of assistive technology devices, ensuring
that CTCs are able to serve everyone, including the 20
percent of the U.S. population that has disabilities and
very few opportunities for technology training.
“Assistive technology is not just beneficial for people
with disabilities but has been proven to improve the
technology training experience for all, ensuring success
in today’s economy,” said Kavita Singh, executive
director of CTCNet.
Additionally, Laura Sanford, president of the AT&T
Foundation, noted that wider availability of technology
is key to community development. “Technology is the
gateway to jobs, education and information in the 21st
century,” said Sanford.
Mary Lester, executive director of ATA, explained that
the services funded by the AT&T Foundation grant will
go a long way toward equalizing opportunity. “Lack of
information about what technology exists and how to
use it is still the primary barrier preventing people with
disabilities from accessing the technology that can dramatically improve their quality of life and economic
status,” said Lester.
The grant to CTCNet is part of the AT&T AccessAll
signature philanthropic initiative, a landmark three-year
ACCESSIBLE VIDEO
A&E PILOTS DESCRIPTIVE NARRATION
A
&E Network has recently collaborated with The
Media Access Group at WGBH to expand its
accessible programming with the availability of
a descriptive narration track on the A&E website for Touch The Top of the World, a film based on
Erik Weihenmayer, the first blind climber to summit
Mt. Everest. The film debuted recently on A&E and
stars Peter Facinelli (Six Feet Under, Fastlane, The
Scorpion King) and Bruce Campbell (The Adventures
of Brisco County Jr., Homicide, The X-Files).
Audio description of the visual elements of the film are
available for the next month and a half via the A&E
Network website, where visitors can access an audio
stream that includes moment-by-moment descriptions
of the action in the movie, including gestures, costumes, settings, who is speaking and text that appears
on screen.
In 2001, Weihenmayer began his ascent up the tallest
mountain in the world, Mt. Everest, but the film chronicles his journey from much earlier in life when he was
diagnosed with a genetic disorder that ultimately led to
total blindness by the time he was 13. In the wake of
the sudden death of his mother, he and his family began
taking treks into remote mountain areas to keep their
lives intact. Soon Weihenmayer was taking on greater
challenges, including rock climbing, while finishing
college and starting his teaching career. While teaching,
he fell in love with a colleague, Ellie, and they married
and moved to Denver. After conquering numerous
major peaks, Weihenmayer decided to confront his
biggest challenge yet—Mount Everest, the world’s
highest peak. Along the journey, Weihenmayer and his
team faced unbearably treacherous conditions and witnessed the frozen remains of those who had failed in
similar attempts years earlier. Finally, Weihenmayer
and his colleagues made it to the top of Mount Everest,
quite literally the top of the world.
Video descriptions make television programs, feature
films, home videos and other visual media accessible to
people who are blind or have low vision, allowing them
to fully engage with the story. A carefully written script
is prepared by a trained describer, read by a professional
narrator and mixed in a professional audio production
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suite for broadcast-quality results. A full Descriptive
Video Service (DVS) mix consists of the main program
audio combined with these narrated descriptions.
A&E and The Media Access Group have worked
together for years to make a variety of A&E programs
accessible via closed captioning to viewers who are deaf
or hard of hearing. Touch the Top of the World presented
the first opportunity for the two organizations to work
together in making an A&E film accessible via video
descriptions to viewers who are blind.
www.aetv.com/touchthetop
FIBROMYALGIA
WELLBOX: THE BODY OPTIMIZER
T
he National Fibromyalgia Association (NFA)
recently awarded Wellbox: The Body Optimizer
with the NFA Seal of Approval, making the
therapeutic massager only the second product to receive
this distinction.
Wellbox initially made its debut in the health and beauty
markets as a treatment to reduce cellulite. But Dr.
Chrisanne Gordon, a physician who was using the Wellbox for cellulite, discovered that the technique also eased
her fibromyalgia symptoms of muscle soreness and pain.
The Ohio physical medicine and rehabilitation doctor
was so impressed that she developed a study using the
technique with ten of her fibromyalgia patients. Forty
percent of the participants experienced symptom reduction of 80 percent or greater. These findings led the
European-based company Guitay, the makers of Wellbox, to fund further studies, including one by renowned
fibromyalgia researcher Dr. I. Jon Russell of the University of Texas Health Science Center at San Antonio, who
is in the final stages of a clinical trial looking at the Wellbox effect on the muscular pain syndrome.
Praising the efforts of Guitay, Lynne Matallana, president of the NFA, remarked, “It’s a rare organization
that will dedicate time, effort and funding to develop
clinical trials for an alternative therapy such as Wellbox. Thus, after reviewing all the materials and results
of the studies, and ensuring that Wellbox passes our
strict guidelines for corporate partnerships, the NFA is
pleased to award a Seal of Approval to Wellbox, which
has demonstrated its effectiveness in treating the
symptoms of fibromyalgia.”
In response, Michel Van Welden of Guitay commented,
“We are very honored to receive the NFA’s Seal of
Approval for the Wellbox. With this partnership,
Guitay will further show its commitment to support the
services of the NFA while providing a product that is
scientifically proven to be safe and beneficial in the
management of muscular pain in peoplewho have
fibromyalgia.”
Over 10 million Americans experience long-term pain
associated with fibromyalgia. To date, there is no medication approved by the FDA to treat the condition.
Last year, the NFA awarded its first Seal of Approval to
024 Fibromyalgia, an all-natural pain relief oil developed by Swiss Medica, Inc.
www.FMaware.org/guitay/index.htm
ACCESSIBLE TENT
I
OUTDOOR ENJOYMENT FOR ALL
n response to an identified need for more accessible products for enjoying the wilderness and
outdoors, BlueSky Designs has developed the
Freedom tent, an accessible tent that is attractive, easy to use, affordable and appealing to a wide
audience of campers. An industry first, the Freedom tent
is the collaborative effort of the Eureka! manufacturing
group and BlueSky Designs, a design firm noted for its
work in the biomedical and rehabilitation fields. The tent’s universal design, together with assistive technology,
has provided people with disabilities a tent they can set
up and use themselves, or offers their caretakers conveniences not found in other tents. Extra room and easy-tomanipulate features also make the tent ideal for families
with children and campers needing additional storage for
extended trips.
The Freedom tent is the product of a research and development grant from the U.S. Department of Agriculture
for designing tent technology that meets the needs of
people with disabilities while also appealing to a broader
audience. Outdoor recreation is a significant source of
revenue for rural areas, and products that allow people
with disabilities to camp expand this important market.
Grant-funded focus groups indicated that redesign of
tent technology could significantly improve the usability
of tents, and several different designs were developed,
with the Freedom tent chosen for broad-scale manufacture and marketing by Eureka!
The tent’s amenities include the following: 1) a five-pole
tapered rectangular dome with self-supporting aluminum
frame; 2) a design combination of pole pocket and continuous rod sleeves with post and grommet assembly that
allows setup from one side of tent or from a wheelchair;
3) a patent-pending zipperless vestibule fan door that
requires minimal dexterity and reach; 4) pull handles on
the internal door and window zippers that allow easy
grasp and operation; 5) combination side-entry
doors/windows in the sleeping area that provide excellent ventilation and are sized for side transfer of a person
onto a cot; and 6) a large useable vestibule area that
allows for recreational space or extra storage.
www.blueskydesigns.us/freedomtent.htm
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HUMOR THERAPY
T
his global warming thing doesn’t sound that bad. I
don’t know about you, but I get cold easily, so I
welcome the heat; that’s why I moved to
California—along with being able to get a yummy
burrito. I lived back east for a long time, and stepping
outside every winter morning was like having a frozen
hamburger patty pressed to your face. My SUV has
never had trouble turning over on a sunny day. Sure,
global warming may cause your butt to stick to the
leather seat in your vehicle, but at least you won’t be
waiting around for AAA to jump-start your car.
Global warming would make tanning a lot easier. A tan
makes me look good, but I get anxious and bored lying in
the sun. So if global warming can cut down on the sun
time required to get that George Hamilton bronze, I can
live with that. Let’s face it: sometimes looking good
trumps ozone depletion. Plus, would it really be a bad
thing to see more women walking around in bathing
suits? We could become the Sunshine Planet, like Florida
is the Sunshine State, and start charging aliens from
Uranus to vacation here. I’m sure the little monsters
would pay a hefty fee to get a nice tan on those bald,
gray heads.
I think global warming would put everyone in a better
mood. Sunshine always makes people happier. It brings
back memories of school letting out for the summer. On
the other hand, snow and rain piss folks off, reminding
them of the heating bills they have to pay. (Which
brings up another point: maybe with a few more rays we
can finally get this solar energy thing to work.) With a
little global warming, I’ll bet the suicide rate in Seattle
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would drop, and then the only problem left to deal with
would be grunge music.
And what about penguins? Doesn’t anyone care about
penguins? Tell me they wouldn’t be happier with a little
Bahamas-type climate. Instead of huddling together and
eating snow cones on some arctic iceberg, they could be
playing beach volleyball and sipping rumrunners. And
maybe, just maybe, if it gets warm enough, they can
take off those silly tuxedos.
Okay, the polar caps could melt and perhaps cause tidal
waves that would wipe out coastal cities, but come on,
these resort towns are occupied by beach bums who
don’t have any jobs. Think about it: while you’re busting your butt at a mundane 9-to-5 office job, they’re
waxing a surfboard and waiting for gnarly curlers and
toasty breakers. While they’re smoking dope, you’re
getting reamed by the boss for not collating this quarter’s financial reports. I’m telling you, there’s nothing
like a big wave of reality to get people to work hard and
pay their fair share of taxes.
Bring on the global warming, I say. A little toastiness
means less money we have to shell out for extra clothing.
(And more left over for other necessities—like that
Girls Gone Wild anthology.) We may sweat a little more
and the stains below our underarms may grow bigger,
but hey, it’s not the end of the world…is it?
by Jeff Charlebois
“Ham on
a Roll”
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The ADA and Workers Who
are Deaf or Hard of Hearing
B
eth is a business professional who last year experienced significant hearing loss from an injury.
After a period of recovery, she is ready to reenter the job market and has decided to look for a sales
position. What protections does federal law provide her
against discrimination based on her disability?
The employment provisions of the Americans with Disabilities Act (ADA), a federal law that prohibits discrimination against individuals with disabilities, apply
to employers with 15 or more employees. The law is
enforced by the U.S. Equal Employment Opportunity
Commission (EEOC). Additional protections are available under Section 501 of the Rehabilitation Act—a law
applying to jobs with the federal government, also
enforced by the EEOC—and under many state laws.
Hearing loss affects about 28 million Americans, 15
million of whom are full- or part-time workers. Because
hearing loss is more prevalent as people age, and Americans are increasingly choosing to remain in the workforce longer, the number of workers who are deaf or
hard of hearing is projected to grow.
The EEOC emphasizes that people who are deaf or hard
of hearing can perform successfully on the job and
should not be denied opportunities because of stereotypical assumptions about hearing loss. Employers
often assume incorrectly that workers with hearing
loss will cause safety hazards, increase employment costs or have difficulty communicating in
fast-paced environments. In reality, people who are
deaf or hard of hearing can be effective and safe
employees.
To answer common questions about accommodating with people with hearing loss in
the workplace, the EEOC provides the following guidelines.
WHEN IS HEARING LOSS CONSIDERED
A DISABILITY UNDER THE ADA?
Hearing loss is a disability under the ADA if
any of the following conditions are met: 1) it
substantially limits a major life activity (for
example, ability to understand spoken commu-
nication or hear traffic, sirens, warning alerts, etc.); 2)
it has substantially limited a major life activity in the
past; or 3) an employer regards or treats the individual
as if the hearing loss is substantially limiting.
WHAT CAN AN EMPLOYER ASK BEFORE
MAKING AN OFFER OF EMPLOYMENT?
An employer may not ask questions about an applicant’s
medical condition or require the applicant to take a
medical examination before it makes a job offer. However, an employer may ask all applicants generally
whether they will need a reasonable accommodation
(e.g., a sign language interpreter, additional test-taking
time) to complete the application process.
DOES AN APPLICANT OR EMPLOYEE HAVE
TO DISCLOSE HEARING LOSS?
The ADA does not require applicants or employees to
disclose hearing loss to employers. Verbal or written
disclosure is necessary in order to request reasonable
accommodations, but it can be made at any time
(before or after the hiring process). An employer may
not refuse to consider a request for an accommodation
because it believes the request should have been made
earlier; however, it is a good idea for an individual
with a hearing disability to request any needed
accommodations before performance problems
occur.
Additionally, an employer may ask about a
medical condition or require a medical examination if it has a reasonable belief, based on
objective evidence, that an employee’s medical condition is the cause of performance
problems or may pose a direct threat to the
employee or others. For example, if an
employee makes an unusually large number of
errors in the customer transactions she records
when talking on the phone, her employer
could lawfully ask if she has difficulty hearing customers and, if so, whether she needs an
accommodation. (A possible accommodation
would be a captioned telephone that would allow
her to communicate verbally while receiving an
almost real-time text relay of the conversation.)
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On the other hand, if an employee’s performance problems are unlikely to be related to hearing loss (e.g.,
repeated tardiness or poor writing skills), the employer
may not ask questions about hearing, but instead should
handle the situation in accordance with its general policies for poor performance.
CAN AN EMPLOYER RESCIND A JOB OFFER IF
IT FEARS HEARING LOSS WILL AFFECT JOB
PERFORMANCE?
The first step is for the employer to express its concerns
to the hiree and ask the hiree how he or she would perform the essential functions of the position, with or
without a reasonable accommodation. The employer
may withdraw a job offer made to an individual with a
disability only if it can demonstrate that the hiree is
unable to perform the fundamental job duties or would
pose a direct threat on the job site (i.e., a significant risk
of harm to self or others that cannot be reduced through
reasonable accommodations). Any potential harm must
be substantial and likely to occur.
WHAT MEDICAL INFORMATION CAN AN
EMPLOYER REQUEST FOR A REASONABLE
ACCOMMODATION?
In considering accommodation requests, employers may
ask for reasonable documentation showing that the condition is a disability and that accommodation is needed,
but they are not entitled to full medical records. An
employer may not ask for information about conditions
unrelated to the one for which the accommodation is
requested or require more information than is necessary
to determine whether an accommodation is needed.
WHAT ARE THE CONFIDENTIALITY RULES
ONCE HEARING LOSS HAS BEEN DISCLOSED?
Under the ADA, an employer must keep confidential
any medical information an applicant or employee discloses. The information must be kept in files separate
from general personnel files and must be treated as a
confidential medical record. Importantly, telling coworkers that an employee is receiving a reasonable
accommodation amounts to a disclosure of confidential medical information; as such, an employer
should answer co-workers’ questions with a simple
explanation that it cannot discuss the situation of
any employee with co-workers. An applicant’s or employee’s medical information may
be disclosed only 1) to supervisors if necessary to provide reasonable accommodations or explain an employee’s work
restrictions; 2) to first aid or safety personnel if a condition might require emergency treatment or an employee might
require assistance in an emergency; 3) to
government officials investigating compli-
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ance with the ADA or similar state and local laws; 4) as
needed for workers’ compensation purposes (for example, to process a claim); and 5) for certain insurance
purposes.
WHAT TYPES OF ACCOMMODATIONS ARE
COMMON FOR PEOPLE WITH HEARING LOSS?
Frequent accommodations include 1) a sign language
interpreter (particularly for meetings where moment-tomoment interaction is needed); 2) a TTY, text telephone, voice carry-over telephone or captioned telephone; 3) appropriate emergency notification systems
(e.g., strobe lighting on fire alarms or vibrating pagers);
4) written memos and notes (especially for brief, simple or routine communications); 5) work area adjustments (e.g., a desk away from a noisy area, adequate
lighting for lip-reading); 6) assistive computer software (e.g., net meetings, voice recognition software);
7) assistive listening devices (ALDs); 8) augmentative
communication devices that allow users to communicate orally by typing words that are then translated to
sign language or a simulated voice; 9) communication
access real-time translation (CART), which translates
voice into text at real-time speeds; 10) closed captioning for videos 11) time off in the form of accrued paid
leave (or unpaid leave if paid leave has been exhausted)
for disability-related tasks (e.g., training a new hearing
dog); 12) alteration of non-essential job functions; and
13) reassignment to a vacant position, if requested by
the employee and more appropriate for the his or her
disability.
Note that contracting with another entity to provide a
service or conduct an event does not relieve an employer
of the responsibility to provide a necessary
accommodation for that service or event.
DOES AN EMPLOYER HAVE TO
PROVIDE THE REASONABLE
ACCOMMODATION THAT AN
INDIVIDUAL WITH HEARING LOSS
WANTS?
No. The accommodation must be effective
to remove the workplace barrier, providing
the individual who is deaf or hard of hearing an equal employment opportunity to
participate in the application process,
attain the same level of performance
as co-workers in the same position,
and enjoy the benefits and privileges of
employment available to all employees.
Where two or more suggested accommodations are effective, primary consideration should be given to the individual’s
preference, but the employer may
choose the easier or less expensive one
to provide.
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An employer is not required to provide accommodations that would result in an undue hardship (i.e.,
extreme difficulty or expense), but in these cases the
employer should consider whether some or all of the
accommodation’s cost can be offset. For example, state
vocational rehabilitation agencies or disability organizations may be able to provide accommodations at little or no cost to the employer. Federal and state tax
credits and deductions may also help offset the cost of
accommodations. Even if a particular accommodation
would result in undue hardship, an employer should
not assume that no accommodation is available, as a
different accommodation might be possible without
undue hardship.
ARE THERE ACTIONS AN EMPLOYER IS NOT
REQUIRED TO TAKE AS REASONABLE
ACCOMMODATIONS?
Yes. An employer does not have to remove an essential
job function, lower production standards or excuse violations of conduct rules that are job-related and consistent
with business necessity, even where an employee claims
that the disability caused the misconduct. Additionally,
employers are not required to provide employees with
personal use items, such as hearing aids or similar
devices that are needed both on and off the job.
CAN AN EMPLOYER REQUIRE AN EMPLOYEE
TO USE A HEARING AID OR OTHER DEVICE?
No. The ADA does not allow employers to require an
assistive hearing device, nor may an employer deny an
individual with a hearing disability a reasonable accommodation because the employer believes that the individual has failed to take some measure that would
improve his or her hearing.
WHAT CAN PEOPLE DO IF THEIR RIGHTS
HAVE BEEN VIOLATED?
Applicants or employees within the private sector or
state/local government can file a charge of discrimination
with a local EEOC office, by mail or in person, within
180 days from the date of the alleged violation (extended
to 300 days if a state or local anti-discrimination law also
covers the charge). Applicants or employees making a
claim against a federal agency must file a complaint
with that agency by contacting an EEO Counselor at the
agency within 45 days of the alleged discriminatory
action.
For information and case examples regarding the
ADA and hearing loss or EEOC claims, visit
www.eeoc.gov/facts/deafness.html
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W
ith a mission to organize the world’s information and make it universally accessible and
useful, former Stanford computer science students Larry Page and Sergey Brin are the proud
founders of Google, the world’s largest Internet search
engine. A play on the word googol, the mathematical
term for 1 followed by 100 zeroes, Google’s name
reflects the immensity of the task of wading through a
seemingly infinite amount of Web data.
Initiated as a graduate school collaboration called BackRub (because of its unique process for analyzing back
links to websites), Google got its big break in the year
2000 when the company partnered with the Internet service provider Yahoo!, solidifying its standing as a
provider of great technology that by year’s end would
answer 100 million user queries each day. Similarly, in
2002 AOL chose the company to provide search and
advertising to its 34 million members and tens of millions of other visitors.
In the years since, Google has expanded and refined its
services, from Web searches to advertising to email,
digital maps and blogging. The company has continued
to look for ways to include ever-growing populations of
computer users, including people with disabilities. For
example, in 2005 it launched Google Video, a project
that captures the closed-caption information on TV programming and makes it searchable. Consumers can participate with Google researchers in trying out new innovations by visiting Google Labs, Google’s test bed for
new products.
Recently, Google has developed an additional tool
assisting users who are blind or have low vision.
Google’s Accessible Search, developed by research scientist T.V. Raman, PhD, allows users to prioritize search
results in order of sites that can be easily navigated
using standard screen readers. Raman, who is blind,
explains his interest in refining Google Search technology for users with low vision: “When I search the Web, I
want to find relevant information with a minimal
amount of distraction. But because I can’t see and I use
a device that converts Web text to speech, I’m even
more in tune with the distractions that can sometimes
get in the way of finding the right results. If the information I’m after is on a visually busy page, I have to
sort through that page to find the text I want—an extra
step that can sometimes be very time-consuming.”
Accessible Search looks at the HTML code behind the
webpages and “tends to favor pages that degrade gracefully—that is, pages with few visual distractions, and
pages that are likely to render well with images turned
off,” Raman explains. This refinement holds considerable promise to improve the Internet search process for
the estimated 45 million people worldwide who are
blind and additional 135 million who have low vision.
So far, the response Raman has received from users who
are blind is extremely positive, although many already
find Google’s main search engine fairly easy to use. He
comments, “I’ve been using Google since 2000 as my
primary search engine. I’ve noticed since 2001 or 2002
when Google started putting up ads that it’s actually one
of the most accessible sources of ads for someone who
cannot see.”
Raman says he began designing Accessible Search by
playing around with a search platform called Google
Co-op, created by the company to facilitate the development of search engines that optimize results based on
specific interests or uses. Raman explains, “If you did
not have something like Google Co-op as a platform, if
you wanted to build specialized searches you would
pretty much have to build your own search engine each
time. For each particular community of users with a special set of needs, you would end up with a separate
search engine. With Co-op, you do not have to build a
whole new search tool from scratch. So you get the best
of both worlds—you get the big search engine coverage,
as well as the specialization you want.”
T.V. Raman and (Ra)man’s best friend. (ABILITY Magazine
took a little artistic license in this search page)
16
ABILITY
Raman acknowledges that people who cannot see are
not the only ones who may need a specialized search.
Web surfers with hearing, mobility or cognitive disabilities may have navigation priorities as well. “For now,
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Accessible Search concentrates on the needs of users
who are blind, primarily because I’m one of them,”
Raman says. “Given what I needed myself, and what I
knew best, I did it from my perspective. But the idea
isn’t to limit it to users who are blind.” As it turns out,
many of the sites prioritized by Accessible Search will
also be more easily navigable by users with other disabilities, like mobility difficulties. In the long run,
Raman hopes other accessible search programs will be
developed specifically for other user groups: “The
objective is to develop technologies that drive the future
of the Web toward ubiquitous information access.”
like Accessible Search to be part of Google.com, and
that’s where we’re headed. Currently on Google.com,
you have certain options you can choose as qualifiers
for your search. For example, you can choose safe
search, which eliminates all pornographic sites from
your search results. I envision that someday we’ll have a
similar choice for accessible searches directly on the
main Google.com webpage. Right now we’re putting it
out there for the users to discover and try out, which is
why it’s part of Google Labs. If the number of users
reaches a critical mass and people find it useful, then it
will move out of the lab and we’ll take the next step.”
Accessible Search can be accessed currently on the
Google Labs site, but the goal is to incorporate it eventually as an option on the main Google search page.
Says one of Raman’s associates, “Long-term, we would
by Dahvi Fischer
To try Accessible Search, visit
www.labs.google.com/accessible
Wanting to see how this new
search worked, ABILITY
Magazine tried a nonscientific test. We searched
for John Ratzenberger (from
the TV series Cheers and
Made in America), looking
for differences in the outcome between the standard
Google and Accessible
Search Google. On the standard Google search we
found ABILITY Magazine’s
interview with John Ratzenberger on page 11, out of
782,000 references.
Accessible Search pulled up
ABILITY Magazine’s
interview of John
Ratzenberger on page 1,
with 85,000 references for
user-friendly websites. This
was a significant shift even if
wasn’t a scientific study.
Since 1995,
ABILITY Magazine’s
website has worked diligently
to maintain accessibility,
and it was great to see
Raman’s Accessible Search
technology recognizing this.
ABILITY 17
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I
was reclined, watching this show on cable just to wallow in entertainment, taking it in for white noise or a lullaby.
Then a captivating girl, deaf like me, appeared on screen, rebuking the clumsy advances of a high school boy and
bringing looks that kill to uncharted brazenness.
The show airing was Showtime’s Weeds, featuring Shoshannah Stern as Megan, a deaf high schooler and a certifiable
cutie. Picked up for a second season, Weeds chronicles the struggles of recently widowed mother Nancy Botwin
(Mary-Louise Parker) and her adolescent sons Silas and Shane (Hunter Parrish and Alexander Gould). Thrown into
emotional and financial turbulence, Nancy starts dealing marijuana to make ends meet and soon finds herself in a
social network quite different from her former life, with repercussions for the entire family.
The twist here is that Weeds is no inner-city tale. Opening credits show the fictitious city of Agrestic, a suburbia
generica populated by conformists—morning commuters pulling out identical black SUVs from their driveways
onto a winding street of McMansions, white oxfords-and-black-tie types sipping lattes, and trophy housewives jogging with iPods latched to their waistbands. In short, Agrestic is one of those planned townships that suffocate.
Megan, as played by Stern, is the girlfriend of Silas, the elder son, who at the same time contends with the loss of his
father and the small-but-magnified hazards of high school and puberty. In episode three, he meets Megan, who paints
him for an idiot in more ways than one. Over the remainder of the season they come to better terms and fumble with a
relationship, battling hormones, communication issues and the permeation of marijuana. As Megan, Stern delivers
her lines in several ways: through expression, via pager or instant messaging, in sign language and with her voice.
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Along with Stern, Parker, Parrish and Gould, the superior cast includes Elizabeth Perkins as Celia Hodes,
Nancy’s friend/nemesis, and Kevin Nealon as Doug
Wilson, Nancy’s perpetually stoned accountant and
business advisor.
I was hooked. I ate up the show, watching it until the
season closed and waiting in eager anticipation for the
next chapter.
Like Megan, Stern herself is a compelling character, and
she is no stranger to acting. She got her break with a
guest role on the cable show Off Centre and subsequently appeared as a regular on the short-lived network TV
show Threat Matrix. Additionally, she joined Matthew
Broderick for a cameo in the feature film The Last Shot
and has garnered guest roles on Providence, Boston
Public, ER and The Division, in which she was excited
to act opposite Marlee Matlin, the only deaf actress to
have won an Oscar. This fall Stern will also appear on
the CBS pilot Jericho, making her the only deaf actor in
American TV history to simultaneously carry regular
roles on two prime-time shows.
A long way to Hollywood for a girl from…well, okay,
only 357 miles away. But her route was as roundabout as
travel can go: Stern grew up in Fremont, California,
where she attended the California School for the Deaf
and was a mainstay in the school theater, then defected to
the East Coast (Washington DC) to attend Gallaudet University, the world’s only four-year liberal arts university
for the deaf, where she was critically celebrated on stage.
As it turned out, that stage was her launchpad. Straight
from the Gallaudet University campus, she ascended to
the screen.
Recently, Ms. Stern sat down with me in Los Angeles to
recount for ABILITY Magazine her meteoric path from
suburban Fremont to Hollywood.
20
ABILITY
Glenn Lockhart: You took the Hollywood plunge by
leaving college weeks away from graduation. How did
you decide to take that risk?
Shoshannah Stern: I left halfway through the spring
semester of my senior year, approximately five years ago.
Over winter break, I got an opportunity from Warner
Brothers to audition for a guest-starring role on one of
their sitcoms. I’d knocked on doors when I’d gone to
theater school in Los Angeles the summer of my junior
year, trying to find an agent and submitting headshots,
but nobody would see me and I knew it was virtually
impossible to get an audition if you didn’t have an
agent. So when the Warner Brothers opportunity came
up, I wanted to just go and get the experience of a professional audition under my belt. I never thought I’d
even get called back, much less book the role.
After the role filmed, I thought that was it—a one shot
thing. So I went back to college. But then an agent
heard about my work on the show and flew me back to
book me. Then a couple weeks later I had another audition lined up, so I flew back for that. At that point I just
commited myself to going full-steam into acting. So I
moved to Los Angeles in time to shoot my second television show.
GL: You eventually got your degree, but weren’t you
busy with one or two pilots in the duration?
SS: I finished my degree a year ago, in English with a
focus on writing and literature. I finished by correspondence thanks to a special agreement with Gallaudet University, for which I’ll never stop being grateful. I had
some down time because my show, Threat Matrix, had
just ended and pilot season was slow for me that year.
So I decided to use the time to my advantage. The timing was really perfect, because I think not even a month
after I finished, the audition came for Weeds.
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GL: How did it go when you read for the character?
SS: From the moment I got the materials, I just thought to myself, “Oh my God,
oh my God, I just HAVE to do this.” I showed my brother, who was staying with
me at the time, and he was like, “Are you kidding? This role is yours.” But I’m
really superstitious, so I thought he’d upset the cosmos by saying that, and I got
really angry with him for potentially jinxing me.
I loved the audition because much of the time in the scene I got to fill out the character without even saying anything. Most of the time I get auditions for deaf characters where the scene has them communicating in really convoluted ways, like
reading lips from across the room when the other person’s back is turned or having
other people parrot what they say. I loved that I got to portray Megan without saying anything. It brought so much more depth to her character, because the scene
was focused on who she was and not how she communicated.
I got called back on the spot, which is always such a great feeling. Then my agent
told me I was the only one they called back.
GL: How do you like Megan? She’s a firecracker, and a huge dimension of her
character is nonverbal.
SS: I love Megan. She has so much spunk and personality, and she doesn’t take
anything lying down. She has so much confidence and really knows who she is,
even though she’s so young. I love that she’s smart and unafraid to make fun of
herself.
GL: Does anything in the character remind you of yourself at that age?
SS: I grew up in the suburbs of Fremont, in the San Francisco Bay Area, which is
kind of reminiscent of Agrestic. I was there when I was in high school, and
Megan is in high school now, so I can totally relate to how she feels growing up
in a place like that, safe and reasonably well-to-do, but where there’s nothing
around except a Starbucks on every corner. It can sometimes feel claustrophobic—
you just want to go crazy and bounce off the walls.
GL: (laughs) That’s probably why you live in a big city now. It’s about stimulation
for some people. What was it like to work on the first season of the show?
SS: It was amazing. I went to the table read, and there were all these great actors—
I couldn’t believe I was sitting there with them. I felt like I was Shoshannah
Squarepants, just soaking up everything I could from them like a huge human
sponge. And it’s not just the actors—don’t even get me started on the writers.
GL: Okay, so you love the writers, but they probably don’t have the intimate
understanding of living deaf that you do. How much input do you have about
Megan’s character—what happens to her, how it happens, how she communicates, etc.?
SS: I’m an actor, not a writer. I’d be pretty annoyed if the writers tried to come in
and hang over my shoulder telling me how to act, so I don’t go in and tell them
how to write. I feel I should defer to the writers and the directors because they’re
the ones who have the complete vision. They see things through from the beginning to the end. I’m responsible for one small part, so my scope is much more
limited than theirs.
With that said, the writers and directors really make themselves available to me.
If I ever have questions or suggestions, they’re always open to discussing them. I
think Megan communicates in the most organic way I’ve seen. In the beginning,
when she had just met Silas, she talked with him a lot via pagers and two-way
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messaging because she wasn’t comfortable enough with
him yet to speak. As you see their relationship becoming closer and more serious, she gains confidence, so
she speaks more and more. I think that adds so much
depth to their connection.
If Megan communicated the same way I do, since I
basically sign almost all the time in my personal life, I
wouldn’t be acting. I’d just be playing myself, which
would be much less interesting.
GL: What have you heard from deaf people who have
seen you on the show?
SS: Most of them just want to see more of Megan. They
love that a show of that caliber has a deaf character, and
they just want to know more about her and what makes
her tick. They’re curious about how she feels about
apparently being the only deaf person in Agrestic. A lot
of my friends have ordered Showtime just because of
the show. In general, though, I think the show has kind
of flown under the radar with the deaf community.
GL: Has you had people recognize you when you’re out
in public?
SS: That happens at least once a week, believe it or not.
I think it’s kind of hard to miss me because I’m always
signing. People say they love the show and ask if
Megan’s coming back. I had one woman act out the
spray-painting scene I did in the first episode I was in,
and that was a keeper. They really like how Megan
doesn’t take any crap—that’s the response I get the
most. I’ve also had people ask me if I am deaf in real
life! That makes me laugh, but I think I’d probably ask
the same question if I didn’t know anything about deaf
people myself.
GL: What response have you gotten from your family
about the career path you’ve chosen?
SS: They’ve been unbelievably supportive. I think I’ve
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ABILITY
wanted to be an actress since the day I was born. I even
asked my parents for an agent for my seventh birthday!
I have no idea how I knew what an agent was, but I
guess I’d figured out that I needed one. Of course they
said no, so I had one of my well-practiced tantrums.
That scene repeated itself in some way basically every
year, but they just wanted me to have a normal life and
have the time to make a good decision on my own. They
really did the right thing for me.
I have a feeling that if I’d started when I was younger, it
would probably have been too overwhelming for me.
Plus, my parents were afraid about the ups and downs of
the business. But when I made up my mind about moving to Los Angeles they were nothing but supportive.
My older sister has been working in the art world in
London for the past five years, writing about art and
now creating art of her own, so there’s a lot of similarity
and support there.
GL: Your deafness is hereditary, going back several
generations, but hearing loss comes in many shades,
doesn’t it? You’ve leapt from an environment surrounded by sign language to the mainstream of Los
Angeles, where networking and first impressions are
survival tools for any actor. Have you had to make
any adjustments?
SS: Well, this is kind of a funny story. I am fourthgeneration deaf, which means everyone in my immediate family is deaf. So I grew up always having 100
percent accessibility to language and communication,
which was wonderful and something so many deaf
people don’t have. On the flip side, even though I had
some hearing, I wore hearing aids only when watching
movies, because hearing was really more of a distraction than a benefit for me. I had no reason to hear since
everyone in my world was deaf and I went to a university for the deaf.
When I moved to Los Angeles, I decided I should probably start talking to people. I’d had some speech training
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GL: Deafness must add another layer to the immigration experience. How did your family come to America?
How did they get established—communicating, finding
employment, getting an education?
SS: My grandmother came from Berlin to New York
when she was 12 and lived in the Bronx in a Germanspeaking ghetto. She went to P.S. 47, a school for the
deaf on 23rd Street, and learned sign language. She also
had a deaf friend through the temple who went to the
Lexington School for the Deaf, also located in New York
City, and through that friend she met other deaf people.
GL: Have other members of your family been involved
in theater and acting?
SS: My mother was quite the actress back in the day.
She’s on the cover of the first play written about, by and
for deaf people. It was called Sign Me Alice, a variation
on Pygmalion and My Fair Lady. She was the original
Alice, and people still remember her from that play.
When I was acting in plays in college, I’d always kiss
my hand and then put it on the picture of her that’s
hanging in the Gallaudet University archives. I have
pictures of her from that play on the wall of my bedroom as well, and sometimes before I go to auditions I
still do the same thing.
when I was a kid but I hadn’t really kept up with it. So I
kind of re-trained myself by watching movies and reading the captions. I could match the words to the sound I
picked up, and then rewind to hear again how the word
was spoken. Now I always have an interpreter on set
with me, but I’m basically okay with one-on-one conversations without an interpreter. I’m grateful for that
because situations come up where, unfortunately, an
interpreter can’t always be present.
GL: Just as your deafness is an inheritance, so is your
Jewish heritage. Your last name, Stern is Hebrew for
star, which I hope will prove prophetic. What about the
rest of your name—any story of intrigue there?
SS: Shoshannah means rose in Hebrew. My younger
brother and older sister also have Hebrew names. We
always had two birth certificates, one Hebrew and one
American. I decided to adopt my Hebrew name when I
was eleven. I just felt a deeper connection to it. My parents were completely supportive—in fact, they wished
they had gone with the Hebrew name from the get-go.
They’re both children of Holocaust survivors, and I
think there might have been a subconscious need to
assimilate by giving their children non-Hebrew names.
My middle name is Oppenheimer, which is the maiden
name of my paternal grandmother. She was born in
Berlin and lived through the Holocaust, and the deafness in my family extends past her, to her husband’s
mother, my great-grandmother.
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GL: Despite your busy schedule, I understand you’ve
managed to remain involved in the deaf community and
often give time to causes you feel are important.
SS: Yes, I just hosted a brunch at the House of Blues for
GLAD (the Greater Los Angeles Association for the
Deaf), and I’m involved with Glimmer of Hope, a charity
that helps deaf women who have been victims of domestic and sexual abuse.
I’ve also done two benefit performances of the Vagina
Monologues and hosted another fundraiser for them. It’s
a very important production—it’s so crucial for women to
know that even though they live in a small community,
there should not be any stigma attached to anyone who’s
been abused.
Additionally, I work when I can with Los Angeles’ Deaf
West Theatre. I tell stories in American Sign Language
on Saturday mornings for their Storytime program. Literacy among deaf children is so important, and it’s
another passion of mine.
GL: Have you met any of your Hollywood heroes yet—
the performers who ignited your passion for acting?
SS: Yes, I’ve been very lucky. I remember one time
there was a huge movie coming out that had a deaf character, a really plum role. They were searching all over
America for a deaf actor for it, but they decided to give
the part to a hearing actor instead—I was really upset
about that but felt my hands were tied.
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In any case, Leonardo DiCaprio was attached to the movie at first,
although he later dropped out. But I happened to see him out, and I can
sometimes be really spontaneous and act without thinking, so I stepped up
to him and said, “Can I ask you a question?”…And then I realized who I
was talking to! Staring into his face, I totally lost my nerve and apologized for interrupting him. But he was unbelievably decent and said, “No,
no, what did you want to ask me?” So we talked about the movie and how
disappointing it was for the deaf community that the role wasn’t given to
a deaf actor. He was very attentive and supportive and really listened to
me. He was intuitive about how he needed to communicate with me and
gave me really good advice. It was one of the most inspiring things ever
to happen to me.
GL: What about Marlee Matlin? There were other deaf actors before her, but
she has probably been the best known deaf face since her Oscar in 1986—
when you undoubtedly were an impressionable four- or five-year-old.
SS: I had the opportunity to work with Marlee on a television show, and I
was unbelievably star-struck when I saw her. She’s so highly decorated and
she never stops working. She makes work happen for her, and she takes only
the parts she wants to do. That gives me so much hope.
I really think she is responsible for bringing the world’s attention to the
possibilities of using deaf characters in film and television. Many of her
roles, like her recent movie What the Bleep Do We Know?, weren’t even
written with a deaf character in mind—but look what she brought to the
movie! It’s just beautiful when people choose to look at things a little bit
differently. That’s when magic happens.
GL: Marlee has been leveraging her celebrity in getting legislation passed
for captioning on TV, movies and other video materials. How important is
captioning for you?
SS: It’s totally important—I can’t watch anything if it’s not captioned. I
don’t even like going to movie theaters if the movies aren’t captioned. It’s
like watching a television program or a movie with the sound off—what’s
the point, really?
Individual captioning devices, called Rear Window, are now available in
some theaters for specific movies, but they require you to keep looking up
and down to catch both the captions and the image. It’s not as natural as
having the captions on the screen. By the end of the movie, my eyes are
worn out. It’s just easier for me to wait for the DVD to come out and then
watch the movie at home.
Of course, I’d love for everything to be as accessible as possible. For
example, I’d love for all theaters to have all their movies available for
Rear Window. I think things are getting a lot better, though. There are a
lot more places where real-time captioning and sign language interpreters
are available. Many more television programs are captioned now as well.
We just can’t rest on our laurels; we always have to try to make things
better. I talk about it with people in the industry—that’s the best thing you
can do. Most people are used to seeing things one way. You just have to
tell things in your voice and be who you are—that’s how you educate
people. You can’t sit them down and give them a lecture. Instead, have a
conversation, and then people learn without being forced.
GL: How do you work it when you audition? Do you bring your own
interpreter or do you just work through the communication issues on your
own?
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After a while you just have to go with what you feel is
right for you. I’m always learning from actors I see in
movies and on stage and from those I work with. At the
risk of sounding like a total cliché, I learn from everything I see in life. I think that when you go to workshops, you get one person’s idea of what you should do.
That’s great, but it’s not absolute. The best way to learn
is to actually do something and then learn from the
entire process.
GL: How do you communicate with your agent, and
with the director and crew?
SS: I’m at an agency where I’m the only deaf client, but
they just get it. They know what they need to do to communicate with me. They know to look directly at me
when they’re talking to me and to enunciate a little bit
more clearly and slowly than they normally would. We
also communicate through e-mail. They know I don’t
have a phone, so they send every e-mail to my pager as
well, and they text me if it’s an emergency.
SS: I don’t audition with interpreters. Sometimes they
already have interpreters present if the role is for a deaf
person, and that’s great. But otherwise I choose not to
bring an interpreter, because auditioning is a very special situation. To audition means you’re supposed to
come in and read with the casting director—that’s where
your energy is supposed to go. If the interpreter is in the
room, your attention is usually diverted from the casting
director, so your energy is diverted as well. The casting
director has the script, so they know what you’re saying,
and you know what they’re saying as well. I think acting is all about connecting with your character and with
the other characters. In most cases, there wouldn’t be an
interpreter in the scene when it’s actually being performed, so I like to keep it as real as possible for the
audition.
With directors, they e-mail me, too. I also have an interpreter with me when I’m on set, so communication isn’t
a problem. And after you’ve been on the same set for a
while, working with the same crew, people just naturally
pick up things. The interpreter almost becomes one of
the crew. People know my interpreter, Ramon, by name,
and of course everyone loves him.
GL: Describe for me your dream role.
SS: I would really love to have my grandmother’s story
told. She was the only deaf member of her affluent family in pre-war Vienna, but she was the only one who survived the Holocaust, and she was alone for some time.
Would you understand the Holocaust as a child if it was
happening around you with nobody to explain it? If the
sound was on mute?
GL: Thanks so much. You’ve been incredible.
SS: Absolutely. My pleasure.
by Glenn Lockhart
GL: How do you train? Do you participate in workshops?
SS: I used to go to workshops, but it was the hardest
thing in the world because theater institutes are privately
owned, so they’re not required to provide interpreters.
If I wanted an interpreter, I had to pay for one myself.
But the reason I was going to workshops was that I
needed to book roles because I needed money! Of
course, I didn’t have enough money to afford the
interpreter’s fee plus my own. Most of the time, if I
got the interpreter’s fee waived it was because the
interpreters who went were actors themselves. So they
were trying to learn and interpret at the same time—
which I completely understood—but I wasn’t getting
100 percent of the message.
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Official Website of Shoshannah Stern
www.shoshannah-stern.com
Weeds (Showtime) www.sho.com/site/weeds
Jericho (CBS)
www.cbs.com/primetime/upfront_2006/jericho.shtml
Deaf West Theatre www.deafwest.org
Glenn Lockhart describes himself as deaf as can be. He
works at Verizon in business development for the relay service unit and is a graduate student at the Walter Cronkite
School of Journalism and Mass Communication at Arizona
State University. He jokes that he doesn’t like writing much,
but there’s no way to get sign language down on paper.
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A
s Darol Kubacz crouches down and positions himself in the seat of his customized handpropelled bike (a.k.a. the One-Off) the muscles
in his upper torso swell with a strength active men
strive to obtain. He then glides smoothly down a small
valley for a moment before he cranks his mountain
climbing bike back into position and rides up the next
incline on his way to the top of the mountain. His
intense blue eyes, always focused on the next goal,
portray a courage that is apparent to any observer.
Kubacz, 31, is a veteran of the U.S. Army who has
paraplegia. He sustained a massive spinal cord injury
after breaking his back in the military in 1993, leaving
him without the use of his legs. After retiring from the
Army, Kubacz went to work for the U.S. Forest Service and was involved in developing mountaineering
equipment and wilderness trail access projects. Not
one to let a day go by without pushing the limits of his
ability, Kubacz continued to seek challenge and adventure in the wilds of the outdoors. At age 29 he broke
his neck while freestyle ski jumping and spent 16
weeks in a halo cast before launching back into outdoor activities again.
“The one thing doctors didn’t say was that I’d never
walk again,” Kubacz recalls. “So I just keep on pushing to achieve all that I can. My fuel in life is passion
for living and not worrying about limits or the perceptions that others have.”
To those who know Kubacz, his endeavors come as no
surprise. When he was growing up in South Carolina, BMX riding and the wilderness were his passions. Mountain biking was not the most
popular sport in the area, but he so loved
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being in the wilderness that he eventually began riding
in it. After his injury in the service, paralysis prevented
him from mountain biking for 12 years, so he picked up
skiing and ski jumping instead. Ultimately, Kubacz discovered the One-Off, an all-terrain hand cycle, and he
was soon freely riding again in the mountains he had
always loved.
More recently, he has also become hell-bent on helping
others with disabilities find opportunities and adventure,
founding the nonprofit organization Freedom For Life,
which aims to create opportunities such as service projects, experiential learning and wilderness expeditions
for people recovering from physical or emotional trauma. Kubacz believes that being outdoors and staying
active are necessary elements for everyone to experience to gain the confidence, trust and self-esteem to be
healthy contributors in life.
Always aiming for the adrenaline rush, Kubacz pushes
what might be considered the typical limits for someone
in his physical situation. As if to prove that point to the
most extreme, his first major mission for his newly
formed organization is to spearhead the Uhuru Ascent, a
unique expedition featuring veterans with disabilities
summiting Mount Kilimanjaro, one of the world’s highest mountains at 19,341 feet. The vets will be accompanied by about 20 able-bodied climbers and support staff.
The highest point on Kili is named Freedom Peak, or
Uhuru (pronounced a-who-roo) in Swahili, thus giving
the expedition its name. If the team is successful,
Kubacz with be the first person with paraplegia to summit the great peak completely unassisted. “No one will
push me, no one will pull me and no one will carry me,”
he emphasizes.
The Uhuru Ascent represents an important and lofty
goal in the lives of the veterans, who see themselves as
redefining the perception of what it means to have a disability. The climb is no gimme—the success rate for
able-bodied climbers is often low, and the conditions
and technical aspects of the climb result in unpredictable situations that can impede any climber’s
progress. Other climbers using wheelchairs have
attempted the climb and reached the summit, but all
have required assistance. The community of climbers
and veterans with disabilities has been waiting to see
who will be the first to accomplish the rare feat of
climbing to the summit unaided.
“Typically, disabled veterans are viewed with pity or
sadness from well-intentioned and compassionate people,” Kubacz says. “Freedom For Life is now allowing
veterans with disabilities to be a strong symbol of freedom, showing empowerment and choice in improving
their lives.”
Because he is paralyzed from the chest down, Kubacz
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Darol Kubacz bikes all
terrains with his One-Off
hand cycle
will climb the mountain
using a One-Off for 16,000
feet. Afterwards, he will transition
into a customized adaptive, multi-wheeled ascending
device called a slider, which incorporates conventional
rock climbing gear, ropes, winches and anchoring
devices. This unique apparatus is designed to allow him
to reach the unprecedented final 3,000 feet. At no point
during the ascent will he be carried or pushed.
As a signature expedition, the Uhuru Ascent is poised to
help Freedom For Life gain awareness and raise needed
funds to purchase equipment, such as One-Offs, that
will allow many other individuals with disabilities to
enjoy significant outdoor and recreational activities like
mountain biking, adaptive cycling, rafting, skiing,
SCUBA diving, wilderness trail hiking and rockclimbing. In addition to organizing the Uhuru Ascent,
Freedom For Life sponsors and organizes education
programs and provides peer mentoring at local rehabilitation centers. For climbers who are not yet ready to conquer Mount Kilimanjaro (viewed as the Mount Everest
for climbers with disabilities because it presents more
feasible access), Freedom For Life also takes participants on half-day and full-day outdoor treks.
Energized by the upcoming expedition, Kubacz has
become a regular missionary for Freedom for Life,
recruiting new wilderness-trekkers wherever he goes.
One day while waiting at the airport, he struck up a conversation with a porter working there, Liberian native
John Bell, who also has quadriplegia. The friendship
stuck, and Bell too has now become a hiker.
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One of Kubacz’s most vocal
supporters is Uhuru Ascent expedition
leader Kevin Cherilla, a native of Pittsburgh
who now resides in Phoenix and has led several
successful expeditions up Mt. Kilimanjaro over the
past three years. An experienced mountaineer for nearly
two decades, his adventures have taken him to six continents and more than 20 countries.
“Darol is truly a special individual who continues to
amaze everyone who comes in contact with him,” Cherilla says. “While I have climbed Mt. Kilimanjaro several
times, it will be very special for me to be with Darol
when he attains his goal and reaches the peak with no
assistance. Watching him train and seeing how far he
has come since committing to the Uhuru Ascent has
been a rewarding experience.”
Since 1993, Cherilla has also traveled the globe with
world-class adventurer Erik Weihenmayer, who in 2001
became the first blind person to summit Mt. Everest.
Cherilla served as base camp manager for the 2001
expedition team, which broke five world records.
The monumental Uhuru Ascent expedition will be
chronicled in the climbers’ own words via blogs and
journals. A documentary film crew will accompany
them to produce an all-access portrait of the climb so
that their story can be shared for years to come.
For more information about the Uhuru Ascent and the
Freedom For Life organization,
visit www.uhuruascent.com
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T
he all-terrain hand cycle that Kubacz will use to
climb Mt. Kilimanjaro was created by One-Off
Titanium Inc. This cycle bridges the gap
between today’s road-only hand cycles and the chair
lift-dependent downhill racers. With bicycle cranks for
propulsion and a steering similar to the downhill racers,
this vehicle can climb mountains and descend with both
speed and safety. This arm-powered vehicle is analogous to the modern mountain bike.
The One-Off is designed from the ground up to use the
opposed crank position. Over rough terrain, this position
allows riders to hold their weight up off the steering
wheel with the two crank handles in the horizontal position, letting the arm muscles work in opposition for the
maximum possible 360-degree power delivery and min-
imizing dead spots. On smooth, level pavement, the
road racers are slightly faster, but as soon as the road
starts uphill, the One-Off’s opposed orientation
becomes superior. The steeper the hill, the more important it is to have the continuous power a One-Off bike
delivers.
The prone rider position allows the weight of the rider’s
upper body to be put to use in adding power to the
cranks. Recumbent bicycles are known for their poor
climbing performance because the rider’s weight cannot
be utilized, and power is driven exclusively by the leg
muscles for power. The One-Off rider can straighten an
elbow and lean forward onto the cranks, just like an
able-bodied cyclist getting out of the saddle.
www.titaniumarts.com
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P
eople young and old lined Los Angeles’ city blocks waiting for food handouts. During the Great Depression of
the 1930s, a young Ernst Katz—son of Russian immigrants who by his teens had made a name for himself as a
concert pianist—believed this depressed and hungry city was also hungry for the uplifting power of music. In
1937, amidst these dismal days, Katz summoned his passion for the importance of early musical training and launched
the Jr. Philharmonic Orchestra, giving young people in Southern California a place to go and a challenge to enrich their
minds and lives. His first young musicians staged their debut performance on May 15, 1938, and remarkably, the now
92-year-old Katz has almost never missed a practice or performance since. One of the longest-standing youth orchestras
in the country—and the only orchestra of its age with its original conductor—the JPO has spawned musical talents populating the greatest symphonies across the world. Furthermore, the more that is learned scientifically about the cognitive benefits of music training, the greater Katz’s gift to his young musicians appears to be.
Over the years, springtime in California has come to mean the JPO’s anniversary Concert Spectacular, the culmination
of its concert season, featuring the fun-filled Celebrity Battle of Batons, a star-studded competition allowing many of
Hollywood’s best-loved characters to take a turn directing the group. From grand baton-waving to silly walks to breakaway tuxedos, the guest conductors pull out all the stops, the contest builds, the audience delights and the young musicians appear to bloom. And thus another season begins for this widely acclaimed group.
Composed of more than 100 members from ages 12 to 25, today’s orchestra hails from a variety of social, economic
and ethnic backgrounds, some traveling over 100 miles for each practice and performance. The prototype of a community volunteer, Katz personally funds the orchestra, providing the music, often the instruments and even concert
dress for JPO members who need them—without government subsidies, without soliciting contributions and without
charging his young musicians audition or membership fees. Over the years more than 10,000 of his young people have
performed for hundreds of thousands of audience members. Interspersed among the regular schedule of performances
have been numerous benefit concerts for charitable organizations, with 100 percent of the proceeds going to the host
organization.
Through the years, many who have lauded Katz’s gifts to the community have pointed out that in a world of drug
abuse, gangs and other negative pressures, he facilitates a preoccupation with something positive. At the same time, he
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is fostering another profound benefit—helping develop
the minds and thinking skills of his young musicians far
beyond their music training.
Since the mid-1970s, research on the effects of music
training on the brain, particularly in children, has burgeoned. A multitude of studies from diverse institutions
report the same news—that music training, especially in
the younger years, generates neural growth and greater
cognition, especially in areas of visual-spatial, verbal
and mathematical performance, a long-lasting effect
many researchers call long-term enhancement.
Dr. E. Glenn Schellenberg of the University of Toronto at
Mississauga explains that music training involves experiences that positively affect cognition, requiring kids to
pay attention for longer periods, to read notations, to
memorize passages and to master fine motor skills.
On a biological level, Dr. Gottfried Schlaug of Harvard’s
Medical School, in concert with colleagues both in
America and at Heinrich-Heine University in Germany,
found structural and functional differences in brains of
adult musicians when compared to brains of nonmusicians, such as an increased size of the corpus callosum, a brain structure that facilitates communication
between the two brain hemispheres. The differences
were especially profound in subjects who had received
music training before the age of seven.
Early criticisms of research examining the academic
impact of music training raised the chicken-or-the-egg
question: Do children with music training score higher on
verbal tests, for instance, because those with better verbal
skills already are more likely to take music lessons? Or
does the music training itself make the difference?
Taking these criticisms into account, the most recent studies have been structured differently, yet appear to show
the same results—early music training, in particular, is
linked to cognitive development, with an effect greater
than other types of stimulating activities. For example,
Schellenberg assigned 132 six-year-olds randomly to
groups receiving music training, drama training or no
artistic lessons at all. With this random assignment, the
effects of family background, socio-economic status,
intellectual readiness, preferences, etc. made no difference to the outcome. On follow-up testing, those who
had received the music training scored highest in academic achievement and IQ, an effect noted across all IQ
sub-tests and index scores.
Similarly, Dr. K. Yoshimura of the University of Texas
investigated the correlation between music and arts training and test scores on the ACT, SAT and other standardized tests. Across all socio-economic groups, students
immersed in arts education scored higher than their
peers. Furthermore, the longer the training, the greater
the increase in test scores. Thus, despite other elements
of their background, students with arts education have an
advantage.
On the other hand, Yoshimura’s study and others have
shown that socioeconomic status greatly affects whether
children have access to music training, within their
schools or outside of them, a finding that highlights the
importance of opportunities like the JPO, which facilitates training for students of all backgrounds.
As tightening budgets over the past decades have forced
many schools to cut their music and arts programs,
researchers have appealed to the government to help
stem the loss for children of venues for music training.
In a 1997 presentation before the House Subcommittee
on Labor, Health and Human Services, Education and
Related Agencies, Dr Frances Rauscher of the University
of Wisconsin discussed her research in collaboration
with Gordon Shaw of the University of California at
Irvine. Speaking specifically of the at-risk child, she
noted, “Researchers have found that the failure to develop abstract reasoning represents the most glaring deficit
of deprived children—and abstract reasoning is the very
skill that is positively affected by music training.”
Thus, we can see in broader terms the scope of Katz’s
gift. He provides an important venue for young people of
all backgrounds. His students garner not only the joys of
music for its own sake, but also the likelihood of
enhanced cognitive ability and a boost to future success
in whatever fields they choose to enter. Whether Dr. Ernst
Clockwise from L: Dr. Katz; with Jack Dempsey, Annette Funicello, George Segal, Mia Farrow, Shirley Jones and Mary Pickford
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Katz ever had any notion of the latter makes no difference—many thousands are better off because of him.
CC: Did you ever go to Russia to visit, to see where your
family had come from?
AN INTERVIEW WITH THE MAESTRO
EK: No, I never wanted to go to Russia. I had five
invitations to go, and I refused to go while it was a Communist state. And then it evolved, but I never did go. I
played host to a lot of musicians in my orchestra, though,
from the Moscow Conservatory.
In 2002, Chet Cooper, editor-in-chief of ABILITY
Magazine, first met Dr. Ernst Katz at a private White
House ceremony. Both men were among a select group
of Americans awarded by President George W. Bush
with the President’s Community Volunteer Award, the
nation’s highest award for individuals who have devoted
extraordinary time, energy and resources giving back to
their communities. Katz received the award for his work
with the Jr. Philharmonic, Cooper for his creation of the
ABILITY House program.
Through the years, Cooper has become a loyal patron of
the JPO and was especially pleased to talk to Dr. Katz
about the 70th anniversary of the orchestra.
Chet Cooper: Good morning, Dr. Katz. How are you?
Dr. Ernst Katz: Well, for an old man I’m good. (laughs)
I’m doing my best.
CC: How did you get started as a musician? Did your
parents have a piano in the home?
EK: Yes they did. That you have to have—you may not
have a violin or some other instrument, but a piano you
have to have!
CC: (laughs) I see. How old were you when you started
to play?
EK: I began when I was 14 years old, which was very
late in life, so to speak.
CC: How did you take to it?
EK: I was extraordinary.
CC: I’d like to ask you about your early experiences in
America that inspired you to create the Jr. Philharmonic.
Where was your family from?
EK: They came from Russia…They’re an import.
(laughs)
CC: What did your parents do?
EK: Well, my father was a hat man, and he founded the
Golden Gate Hat Company, the building where our
offices are today. My mother was what you would call a
housewife.
CC: Was there music in your family?
EK: Yes, there was. My great-uncle was a conductor in
Russia and a very fine musician. The Russians held him
in very high esteem.
CC: (laughs) So it went well?
EK: (laughs) Yes, I really was a phenomenal pianist, if I
must say so myself. I’ll pat myself on the back.
CC: And from there with your career, how did people
find out that you were so talented?
EK: Newspapers and magazines published it right away.
I was quite a story at 14 years of age. And also I was a
very cute kid—everybody loved me.
CC: (laughs) So you had an early rise to stardom with
your music. At what point did you say to yourself, “I
want to share this with others….with the youth?”
EK: Oh, right away. Because there was nothing at that
time for young people. So I started on the East side of
Los Angeles, which was the poorest of the poor, and I
Clockwise from L: Billy Barty, Mae West, Frankie Avalon, Johnny Mathis, Henry Fonda, Barbara Stanwyck and Jack Benny
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built the orchestra up from there. It became known so
quickly around the world—it was like electricity. There
was nothing like it around.
CC: You started it out of your home?
EK: Yes I did. And that house is still standing on South
Woods Avenue, a block from Atlantic Boulevard—it was
Atlantic Boulevard when I first lived there. But anyway,
it’s been a happy journey.
CC: A happy journey for you and for thousands of kids.
EK: Yes. Every major orchestra around the world has
roots in our orchestra. For instance, the conductor of the
National Symphony in Washington DC is one of our kids.
same thing I did. I can’t force them to do it, but I can talk
about it. You have to have enthusiasm, to be thrilled to
be alive and thrilled to do anything that will make this
world better. And it is better because of the music. Without music, there is no world.
CC: Do you think your longevity and very active mind
are evidence that music really helps the brain?
EK: Definitely. Music is a very special art. I wouldn’t
have done it if it didn’t make me feel so good. It’s a
magnificent feeling to stand up on that podium, pick up a
baton and put a downbeat out there. You’re followed like
God—everybody should have that feeling.
CC: Is that the thought behind the Celebrity Battle of
Batons?
CC: (laughs) How old do you think that kid is now?
EK: (laughs) I guess he must be…well, I don’t keep
count.
CC: You must have thousand of stories…any humorous
incidents that come to mind?
EK: The whole thing is humor—because if you don’t
have a sense of humor about this sort of thing, you’re
likely to drop it immediately! But I’ve got tough skin, so
I’m able to hold my own, so to speak. The stream of producing young talent is tremendous, just tremendous. I’ve
brought young people from all over Southern California
together to make music that sounds terrific. I’ve touched
not only the people who were actually in the orchestra,
but also their offspring—their children and their children’s children. It’s a wonderful ripple effect. People
come back after 50 years, and I look at them, and they
are the same people I knew when they were originally in
the orchestra. Now, that’s a nice feeling.
EK: Yes, because everybody wants to become a conductor. Whether it’s popular music or classical, they all want
one thing—to hold the baton to conduct. Hundreds of
people have vied for that Golden Baton, and thousands
more have enjoyed seeing them do it.
CC: During the years of the Battle of Batons, have many
people been injured?
EK: (laughs) No, nobody was injured.
CC: Has any contestant stood out by doing something
you didn’t expect?
EK: Oh, many. Jack Benny actually came up, took the
concertmaster Gary Greene’s violin, and impromptu
played the violin as he conducted.
CC: Well that’s funny, because he played the violin in his
comedy act, didn’t he?
CC: Over the years, have you been able to show others
how music helps young people with learning, and helps
them in school?
EK: Yes, he did. He played it and he joked about it. He
was really serious about the violin, but no one took him
seriously because he was a comedian.
EK: Oh, yes. I’ve been invited to talk to assemblies and
to orchestras to try to influence other people to do the
CC: How have you met the celebrities who have participated in your concerts?
Clockwise from L: Ed Asner, Norm Crosby, Richard Pryor, Jackie Cooper, Dick Van Patten, Joe E. Brown and Buddy Ebsen
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EK: I just picked up the telephone and called them up.
When they understand what the Jr. Philharmonic is all
about, they take a special interest in it.
CC: Yes, we have some great spirited people who want
to give back.
EK: Well that’s what America is all about, you know.
When our ancestors came here, there was nothing here.
And look at what a magnificent country we have.
ACROSS THE GENERATIONS: JPO CONCERTMASTER GARY S. GREENE
For several decades, Jr. Philharmonic Orchestra concertmaster Gary S. Greene has played ebony to founder Dr.
Ernst Katz’s ivory. As Katz’s nephew, he says he was
“brought up in the family of music,” attending JPO concerts and rehearsals as a young child, long before he
would join the orchestra himself as an adolescent. He
became concertmaster—the lead first violinist—when he
entered college and has stayed on with the JPO ever
since, now taking on many of the day-to-day duties of
running the orchestra. Greene reminisced with Chet
Cooper about his history with Katz and the noted youth
orchestra.
Chet Cooper: What are some of your earliest memories
with the Jr. Philharmonic?
Gary S. Greene: Well, there is a picture of me at the 17th
anniversary, and now we’ll be celebrating the 70th, so
I’ve been around for a while. I remember at that 17th
anniversary concert admiring the concertmaster and setting my goal that someday I would become concertmaster just like him. When I turned 12, I joined the orchestra
as a violinist in the second violin section. From there I
practiced and worked my way up, and I never left. Now I
take on a lot more of the duties, including auditioning,
and I do a little more conducting each year. In fact, this
last concert I did almost all of it.
In a nice turn of events, that concertmaster I idolized as a
child attended our last concert, and I invited him to solo
with the orchestra at our 70th anniversary.
CC: Do you have a day job, besides working with the
orchestra?
GG: Well, by profession I’m an attorney. The interesting
thing about the orchestra is that it’s an all-volunteer
effort. It’s non-commercial, it’s not subsidized by the
government and we don’t solicit. Dr. Katz’s theory has
been that by volunteering his support he encourages others to volunteer. Dr. Katz writes the checks for the
expenses, as they are—basically, he has invested in the
orchestra over the years, for instance with a music
library. And we pool resources—my office is in a building that also houses an office for the orchestra, and we
do our auditions there. With respect to various orchestra
rehearsal locations, because Dr. Katz does so much for
youth, there are other groups that see what we do and
join forces with us. We are now rehearsing at a private
school called the Center for Early Education. It’s a wonderful marriage because they value having a resident
orchestra for the students and families to partake in and
listen to as part of the education process.
CC: What’s your view of music training in our schools?
GG: Music is important for all areas of human life. People think, “Well, if you cut music out of the schools, so
what? Maybe you have a few less musicians.” But it’s
much broader than that. Music at its roots teaches discipline, and that gives students a foundation for all other
education, for being responsible people. Studying an
instrument requires practice and discipline; there’s no
other way about it—it’s responsibility. And belonging to
an orchestra means learning to work with other people.
I can give you an example of how successful it is. In the
year 2000 we put together a Millennium Orchestra. I
reached out to the schools all over Southern California.
Many schools do not have music programs, and of those
that do, most have bands rather than orchestras, so I
reached out to the schools that had bands. We tried to
involve kids from all economic, cultural, ethnic and
social backgrounds, and the group we put together consisted of kids from both affluent areas and poor areas.
We brought together close to 2000 musicians for one single rehearsal before a concert at the Shrine Auditorium,
Clockwise from L: Phyllis Diller, Leslie Nielsen, Chevy Chase, Dick Van Dyke, Arte Johnson, Michael York, Buzz Aldrin and Louis Nye
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where we were to play John Philip Sousa’s “Stars and
Stripes Forever.” In one hour of rehearsal time, we had
to make this thing work.
Now just imagine bringing together even 20 or 30 average middle school and high school kids—you know
they’re going to talk, they’re going to make noise, there
are going to be all kinds of issues, so how are you going
to get them to perform with one hour’s rehearsal? Well,
we brought these 2000 young people into the auditorium,
and you could hear a pin drop because they were all paying attention. I believe it’s because they all had something in common, which was music. And music means
discipline. Because of the training that they’d had, they
were able in one hour to put this program together and
make it perfect for the performance that night. That kind
of capability is what music really teaches.
CC: Do you ever hear from the orchestra’s many alumni?
GG: Last night I was at the Hollywood Bowl and had a
chance to speak to one of our former members, who had
played in the orchestra approximately 50 years ago. In
fact, he was conducting at the Hollywood Bowl—he is
Leonard Shlatkin, the conductor of the National Symphony Orchestra in Washington DC.
A few years ago, we invited another of our alumni members to perform with us. Approximately 25 years ago he
played trumpet in the Jr. Philharmonic. He is still a musician, but he no longer plays trumpet. Today he goes by
another name today—Flea—and he plays with the rock
group Red Hot Chili Peppers. So our alumni cross the
spectrum musically, from classical to popular.
CC: What are some of the most memorable concert
experiences?
GG: A little over 30 years ago, we were invited to play
a benefit concert for a children’s hospital in Santa Monica. We were going to perform at the Getty Ranch in
Malibu—the main property of oil magnate J. Paul Getty
Sr. before the current Getty Museum was built in the
Pacific Palisades. We were invited by J. Paul Getty and
Teddy Getty (his wife at the time, now Teddy Getty Gaston), who had lost their son and wanted to do a benefit
concert. Well, we got down to the ranch, looked at the
site and couldn’t figure out where we were going to put
the orchestra. Mr. Getty suggested, “Why don’t we play
the concert right here on the lawn?” And I said, “Well,
you can’t put an orchestra on a lawn outdoors without a
stage or a shell.” So he replied, “Okay then, it’s simple—
we’ll just build you a stage and a shell.” And he did! He
built it out of wood so it had a nice sound, and we played
on a grass knoll below the house. It was a fascinating
afternoon concert, well-attended and very successful.
Then after the program they took all the lumber they
used for creating this stage and used it to frame the Getty
Museum, which was built shortly thereafter.
Another story goes back to the early 1960s. The City of
Los Angeles at that time wanted to expand trade and set
up what was called the Sister City program. One of the
Sister Cities was Nagoya, Japan, and the Los Angeles
mayor at that time, Sam Yorty, invited Dr. Katz to play in
this exchange. An all-city high school band from Nagoya
was sent to Los Angeles, and our orchestra housed the
members of the band and performed in concert with
them. When they arrived, we found that none of them
spoke English, and no one in our orchestra at the time
spoke Japanese. But we mixed the two groups together
for a joint rehearsal with Dr. Katz and their band conductor, and without communicating by language, when the
baton came down it was amazing—we played perfectly
together. Music is that international language—no matter
what language people speak, they can communicate
through music.
CC: Do you have any favorite memories from the
anniversary Concert Spectaculars?
GG: One year we invited Michael York to narrate for us
in our performance at the Dorothy Chandler Pavilion in
Los Angeles, and we selected Camelot, which he had
never narrated before. It just so happened that in the audience that night was the producer for the next national tour
of Camelot, and based on Michael York’s performance
with us that night he was selected to take the role of King
Arthur.
CC: When did the Celebrity Battle of Batons become
part of the Concert Spectacular?
Clockwise from L: Connie Stevens, Gene Barry, Weird Al Yankovic, Flea, Jimmy Durante, Eddie Albert and George Hamilton
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GG: That tradition goes back almost to the founding of
the orchestra. Dr. Katz thought, how does one really
focus attention on young people in music? He wanted to
create something positive to get the press out instead of
the negative things that usually end up on the front page
of the newspaper. So he began inviting famous people—
most of whom were not musicians—to our concerts and
asking them to come up impromptu and conduct the
orchestra. And that has become the trademark of our
anniversary concert for almost 70 years now.
narration with us—which was very beautiful—and then
shortly thereafter he was called upon by the New York
Philharmonic to narrate Copland’s “Lincoln Portrait,”
and that came out of his experience with us.
It’s almost a Who’s Who of Hollywood that participates
in each year’s Concert Spectacular. For the past 10 years
the Battle of Batons has been hosted by Army Archerd,
columnist for the Daily Variety. Each year five celebrities compete in conducting the orchestra, the audience
votes for their favorite and the winner gets the Golden
Baton.
GG: (laughs) It certainly was. The audience thought it
was tremendous, and he won the Golden Baton that year.
Some years earlier we had Weird Al Yankovic come, and
he decided to wrap his foot around his head and conduct
that way. He was quite dexterous, and he also won the
Golden Baton. So we’ve had many interesting things
happen. We’ve had a strap or two come off a dress, and
we’ve had some really funny people up there.
We had Flea conduct the orchestra when we brought him
back as a celebrity, and he did something most unusual—
he stood on his hands and conducted with his feet.
CC: Sounds like it was quite a feat.
CC: What performances stand out in your mind?
There have been some interesting antics. For instance,
the comedian Avery Shriver years ago came dressed as a
train conductor to conduct the orchestra.
Also, I will always remember our concert in June 1968,
the night after the California presidential primary—when
Robert Kennedy was shot. The day of the concert
Kennedy was still alive but in critical condition. Jimmy
Durante was scheduled to come for the Battle of Batons,
but he called in the morning and told us his heart wasn’t
in it because he was a godfather to one of the Kennedy
children. But that night, unexpectedly, there in the wings
just before he was supposed to go on was Jimmy
Durante, dressed in the way we always picture him with
that hat, and he said, “The show must go on.” You
couldn’t get it from anyone more venerable than that—
and the show did go on.
Then in the early 70s we invited Henry Fonda to be master of ceremonies and participate in the Battle of Batons.
He had never conducted an orchestra, as many have not,
and when he got up there he actually froze—he didn’t
know what to do until someone gave him the downbeat
and got him going. The interesting thing was, he learned
all about our orchestra and orchestral music, and he did
One night we had Chevy Chase, and—obviously, you
knew he was going to do it sometime—he tripped over
the podium and really got the audience laughing. We also
invited Buddy Ebsen. He was rather serious, but he was
the sentimental favorite and won the Golden Baton. He
was just so excited about it that he asked the orchestra to
perform and celebrate with him his 80th birthday. He
invited us out to Palm Desert and we performed at what
was at that time the brand-new McCallum Theatre at the
Bob Hope Cultural Center, in a fundraiser for Desert
Hospital.
CC: What’s on the upcoming agenda for the Jr. Phil?
GG: Well, for one thing, our 70th anniversary concert
will be held at Los Angeles’ Walt Disney Concert Hall.
It’s very exciting for the orchestra members to get the
chance to play in what is considered one of the finest
concert halls in the world.
CC: Best of luck, and we’ll be sure to see you there!
foreword by Sandra Herald
www.jrphil.org
Clockwise from L: Stephanie Powers, Pat Boone, Tommy Smothers, Mickey Rooney, Rip Taylor, Bernie Kopell and Gary Owens
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Clockwise from top L: Mark Goffeney volunteers alongside ABILITY Awareness’
Director of Operations Judi Pennella; the ABILITY House take shapes; soldiers
from Schoffield Barracks’ medical unit grab a photo op with Miss Universe Natalie
Glebova; Jeff Charlebois and wife Nicole help frame the ABILITY House;John
Siciliano digs a trench; Siciliano, Charlebois and actor Max Gail finish the day
sore but smiling
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M
ark Goffeney, a musician who lives in San
Diego, places a call to airline reservations asking for the accommodations he needs to comfortably fly the four-and-a-half hours to Honolulu to
volunteer building Hawaii’s first ABILITY House. “I
was born without arms,” he tells the airline representative, “and I use my feet for things other people use their
hands for. If there is an empty seat on the plane, I need
my seat reserved next to it so I can eat and reach around
without bumping someone else with my knees.”
A travel veteran, Goffeney is used to the wait required
while the clearly confused service representative checks
with her supervisor. He is also used to her next
response, a dozen Muzak songs later: “My supervisor
doesn’t know about the seat, but we can provide you a
wheelchair to assist you to and from the plane.”
A wheelchair, of course, isn’t much use to a man who
can walk—and who also runs, swims, drives a car,
effortlessly entertains crowds as he plays guitar with his
band Big Toe, and has even been featured in a national
TV commercial changing a baby’s diaper with his feet.
So please, would someone get this man a wheelchair!
And STAT! (And maybe some flight safety instructions
in Braille for him to peruse.)
For every person like Mark Goffeney out there hoping
others will see that he is an individual and not a category,
there are many more people like the airline representative who unconsciously pigeon-hole people with disabilities into the roles that fit their preconceived notions and
stereotypes. That’s one reason the ABILITY House program was created.
Each ABILITY House is built through a partnership
between the nonprofits ABILITY Awareness and
Habitat for Humanity to provide an accessible home
for a family where one or more members have disabilities. Additionally, the program reaches into the local
community, inviting people with all ranges of health
conditions and disabilities to join the volunteer team
in constructing the home. As these diverse volunteers
work together on the build site, a transformation frequently occurs in both the volunteers with disabilities
and their able-bodied counterparts. The tangible,
cooperative act of building a house together shatters
myths and stereotypes. As Dr. Patricia Morrissey,
commissioner of the Administration on Developmental Disabilities in the U.S. Department of Health and
Human Services, noted in a recent training video for
ABILITY Awareness, “Volunteerism is a very constructive way to teach people without disabilities what
people with disabilities are capable of doing.”
A grant from the Corporation for National and Community Service, a federal agency supporting volunteerism,
along with support from Hewlett Packard and founding
sponsor ABILITY Magazine, has allowed the ABILITY
House program to expand over the past year, working
especially to
increase volunteering opportunities for veterans, recuperating
servicemembers
and college students with
disabilities.
The ABILITY House
that Goffeney joined in
building was constructed in Waimanalo,
Hawaii, in partnership with Honolulu Habitat for
Humanity, as the new home for the Kamaiopili family, a
grandmother with degenerative back disease and her
three adopted grandchildren. Construction was timed to
coincide with the Pacific Rim Conference hosted annually by the Center on Disability Studies at the University of Hawaii. The home’s universal design features—a
no-step entrance, wider doors and hallways and an
accessible bathroom—will ensure that the Kamaiopili
family and their visitors will continue to have ease of
access for decades to come.
Actor Max Gail, a long-time ABILITY House supporter
best known for his role as Detective Wojo on the sitcom
Barney Miller, came out to volunteer, as did actor/Paralympian John Siciliano and comedian Jeff Charlebois.
Several servicemembers from the Medical Retention
Processing Unit at Schoffield Barracks, the Army unit
on the island of Oahu responsible for rehabilitating
injured soldiers—many of whom have returned from
combat in Iraq—made the 45-minute journey from base
to lend their muscle to the project. As a special
acknowledgement for their efforts, Miss Universe Natalie Glebova, who also joined in the build as a volunteer,
made a visit to the barracks, where she posed for pictures and signed autographs.
Nancie Ozimkowski, a volunteer who is blind,
described the Waimanalo ABILITY House build as “the
most empowering experience I’ve ever had.” Ironically,
she had been married for 20 years to a building contractor and remarked, “In all the years of my marriage I
never had the opportunity to hammer a single nail!”
Ozimkowski commented that initially she was a little
nervous and didn’t know what to expect. “At first, I
couldn’t hit the nail,” she said, “but I lost that feeling of
awkwardness within the first hour. At some point it
clicked for me, and by the afternoon I was climbing up
on sawhorses and scaffolding and pounding nails in. I
felt so welcomed, like I really was making a difference.
I wasn’t just a token person with a disability—I was part
of a community that was working.”
Like Ozimkowski, Goffeney also hammered his share of
nails. Additionally, he helped dig a trench, cut out a
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L to R: Goffeney shows his carpentry skills; Glebova signs
autographs and recruits volunteers at Schoffield Barracks
doorway and generally filled in with any task that needed
a helping foot.
Every ABILITY House draws a diverse group of volunteers: retirees and college students, soldiers and civilians, people with hidden disabilities such as diabetes or
mental illness and people with very visible disabilities
like Ozimkowski’s and Goffeney’s. Each day the full
range of construction jobs is presented to everyone, and
each volunteer chooses the job he or she wants to learn.
Unlike the airline service representative who was unable
to see that a wheelchair is a not a one-size-fits-all
accommodation, experienced construction volunteers on
the ABILITY House build site help volunteers with disabilities find creative and resourceful accommodations
that allow them to contribute to their maximum potential. For example, when Ozimkowski first began learning to hammer, the construction supervisor offered her a
mallet that provided a larger hammering surface. After a
short time, she moved to a standard hammer and was
successfully nailing away, feeling the nail’s position
with her hands and listening for the distinctive ping that
echoed when she hit it straight on. “To group everyone
together under one set of rules isn’t going to work,” she
related. “It wouldn’t work for able-bodied people either.
Everyone has an individual level of assistance they need
in order to be capable.”
Charlebois, who has quadriplegia from a spinal cord
injury, echoed Ozimkowski’s sentiments about the value
of his volunteering experience. “It makes me feel positive and respected to be here, putting whatever I have
into something for somebody else. When I volunteer, it
elevates me as a person.”
Heather Ferguson, an able-bodied volunteer who
worked with Ozimkowski, exemplified how working
with volunteers who have disabilities is a rewarding
opportunity for able-bodied volunteers as well. Ferguson reported, “When I was first asked to help Nancie, I
didn’t know what a blind person was going to be able to
do. I couldn’t fathom her nailing or anything. But I was
42
ABILITY
astonished at how well she did. She felt where the nail
was, and she was driving them in. I was very impressed
with her ability, and I think the experience really helped
her as well. She felt such a sense of accomplishment. It
was like she didn’t even have a disability—she was
doing it like any other person. It really changed my idea
of what people with disabilities can do.”
Ferguson commented that she would love to see more
opportunities for people with disabilities to join in volunteering. “I’ve never seen any other organization bring
anyone with a disability out to help with them, and I
think it should happen more. Everybody wants selfworth, everybody wants to help. More groups need to
do this. I think of so many different things people with
disabilities could be helping with.”
Most of all, the volunteers appreciated getting to know
each other. Said Ozimkowski, “The people I worked
with, we talked about so many things. It wasn’t just the
building that was going on. We were swapping life stories, being human. It wasn’t about disability—it was
about being part of a community.”
Roger Crawford, a well-known athlete and motivational
speaker who presented at the Pacific Rim conference, confirmed Ozimkowski’s sentiments about the ABILITY
House program’s value in breaking down barriers: “To
have people working side by side for a common cause is a
way we can become educated about a person’s disability.
When you look at someone who has a visible disability,
you may have preconceived ideas about what they can
accomplish. But differences in life don’t mean deficit—
they just mean different.”
by Romney Snyder
For more information about the ABILITY House program
and other programs of ABILITY Awareness, visit
www.abilityawareness.org
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W
hen we consider the most iconic, influential and well-known music groups in American pop culture, one
name that undoubtedly comes to mind is The Beach Boys. This harmonious sensation, featuring the musical talents of Brian, Dennis and Carl Wilson, Mike Love and Al Jardine, swept the 1960s generation with
memorable hits including “Kokomo,” “Help Me, Rhonda,” “Surfin’ USA” and “California Girls.” While the group as
a whole was a huge success, lead singer Brian Wilson stands out in the minds of fans and critics alike as the musical
soul of the fabulous fivesome.
However, early in The Beach Boys’ performing career, despite their growing popularity, Wilson became increasingly
uncomfortable appearing on stage and took a behind-the-scenes role as the group’s creative leader. His musical innovation hit a high note in 1966 with the release of the Pet Sounds album. The compilation, which music legend Paul
McCartney has called his “favorite album of all time,” put the boys on the map as one of rock-n-roll’s most talented acts.
The album was soon followed by the group’s largest selling single, the chart-topping platinum hit “Good Vibrations.”
Still, as The Beach Boys’ success grew, so did Wilson’s seclusion. In the late 60s and early 70s, he sank into a morass
of drug use and depression, reportedly spending weeks to months at a time in bed. His overeating supposedly led his
first wife, Marilyn, to padlock the refrigerators. In 1976, Wilson’s family engaged the help of controversial psychiatrist
Eugene Landy. While the Wilsons ultimately rejected Landy’s methods and control over his patient’s life, Wilson did
recover his musical productivity and began recording and even performing on stage again.
As time went by, he embarked on a solo journey, launched with the album Brian Wilson in 1988. Subsequent projects
included The Wilsons, an ensemble with daughters Wendy and Carnie, two-thirds of the Grammy-nominated pop
group Wilson Phillips. Then in 2004 Wilson astounded the pop world with his re-recorded version of SMiLE, a legendary unreleased Beach Boys album abandoned in 1967 because of creative differences with other group members.
The project garnered him a Grammy for best rock instrumental with the track “Mrs. O’Leary’s Cow (Fire).”
Thus, while Wilson’s plaques and awards may be covered in gold, his road to success has been paved with anything
but. His mental health struggles have been legendary, even appearing in the lyrics penned by current-generation rock
stars (as with the Barenaked Ladies’ musical quip, “Lying in bed, just like Brian Wilson did…”). However, not until
recently has Wilson discussed openly that his experiences go far beyond simple depression and drug use to a mental
condition called schizoaffective disorder, which involves ongoing hallucinations, paranoia and other distortions of
reality. Recently, Wilson sat down with ABILITY Magazine’s editor-in-chief Chet Cooper and senior health editor
Gillian Friedman, MD, to talk about his music, his mental health, and the love and family that these days bring him
contentment and sanity.
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Chet Cooper: Tell me about the beginning of the band
The Beach Boys. How did you get together and where
did it start?
Brian Wilson: It started in Hawthorne, California, where
we grew up, outside of Los Angeles. I rented some
instruments along with my brothers Carl and Dennis,
my cousin Mike and my friend Al Jardine. We played a
little and realized our voices blended well combined
with the instruments. My Dad had also been a music
producer and a publisher, and he got us a connection for
some studio time. And the rest is history.
Gillian Friedman, MD: So you had a little inside
knowledge about what was necessary to break into the
business.
Cooper: What led you to choose surfing as the theme of
your songs and the theme of your band?
Wilson: Because my brother Dennis said surfing was
the new thing, the new fad. He was the surfer in the
group.
Friedman: So you weren’t all surfers per se?
Wilson: No, I was never a surfer. I never learned.
Cooper: Do you ever think of trying?
Wilson: No—I’ve gotten along this far without it.
Cooper: Because we were planning to take you out
tomorrow and go down to San Onofre Beach.
Wilson: Yeah, my dad taught me a lot.
Friedman: How did you choose the name Beach Boys?
Wilson: We didn’t. When we cut the first album we
were going to call ourselves The Pendletones, after a
type of sweater everyone was wearing. Russ Regan, a
promoter for Candix Records, came up with the name
The Beach Boys.
Wilson: (laughs) Okay, I’ll tell you what—in that case,
I’ll ride a big wave for you! No, surfing was just what
we thought people would want to hear.
Friedman: Did you ever expect, when you started
recording, that the group would become such a big hit?
Wilson: No way, I had no idea about that.
Cooper: And when you got older were you going to
change it to The Beach Men?
Cooper: Was there some crazy piece of luck that propelled you, being in the right place at the right time?
Brian: (laughs) We considered it, but we didn’t want to
confuse our listeners, so we kept it the way it was.
Wilson: A lot of it was my dad. He took us to a really
good recording studio and helped us out a lot. But he
was also pretty tough at times. He scared me so
much with his yelling—he would be
yelling and poking fingers in my
chest, screaming, “Get in there and
kick ass and make a good
record.””All I could say was,
“Okay Dad, all right.” But then
we’d go ahead and cut something
great like “Good Vibrations” or
“California Girls.”
Friedman: At what point did your
schizoaffective disorder start to
appear?
Wilson: Well, for the past 40
years I’ve had auditory hallucinations in my head, all day every
day, and I can’t get them out.
Every few minutes the voices
say something derogatory to
me, which discourages me a little bit, but I have to be strong
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enough to say to them, “Hey, would you quit stalking
me? F*** off! Don’t talk to me—leave me alone!” I
have to say these types of things all day long. It’s like a
fight.
Friedman: Do you think the voices were part of what
made it difficult for you to go on stage for many years?
Wilson: Oh, I knew right from the start something was
wrong. I’d taken some psychedelic drugs, and then
about a week after that I started hearing voices, and
they’ve never stopped. For a long time I thought to
myself, “Oh, I can’t deal with this.” But I learned to
deal with it anyway.
Friedman: When did you start getting treatment?
Wilson: Yes, because when I was on stage I could hear
voices telling me negative things about myself. Even
today, when I sing I have to force myself not listen to
them. But when the concert is over, the voices come
back.
Cooper: How old were you when the voices started?
Wilson: About 25.
Friedman: So you were already a successful musician
when they started.
Wilson: Right. I believe they started picking on me
because they are jealous. The voices in my head are
jealous of me.
Cooper: How long did it take after they started before
you really understood what was going on?
Wilson: Not until I was about 40, believe it or not. A lot
of times people don’t get help as early as they should.
Cooper: Has treatment made your life easier?
Wilson: A little bit. It has made my symptoms bearable
so I don’t have to go screaming down the street yelling,
“Leave me alone, leave me alone,” and that kind of
thing.
Friedman: Does anything else accompany the voices?
Wilson: Yes, I get intense fear, too. It comes and goes.
You get the feeling and it goes away.
Friedman: Do you remember any of the intense fears
you’ve had?
Wilson: No, not really—they are so bad that I’ve
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blocked them out. I try very hard not to remember them.
But I do know they’ve raised my stress level and made
me feel depressed a lot. I have to take medication to
treat the depression.
Cooper: What has depression been like for you?
Wilson: Well my depression goes pretty low, pretty
deep. I get depressed to the point where I can’t do anything—I can’t even write songs, which is my passion.
Cooper: Is there anything that brings it on? Anything
that seems to make the depression hit harder?
Wilson: Now I get it mostly in the afternoon. I dread the
derogatory voices I hear during the afternoon. They say
things like, “You are going to die soon,” and I have to
deal with those negative thoughts. But it’s not as bad as
it used to be. When I’m on stage, I try to combat the
voices by singing really loud. When I’m not on stage, I
play my instruments all day, making music for people.
Also, I kiss my wife and kiss my kids. I try to use love
as much as possible.
Friedman: Have you ever gotten so overwhelmed by the
voices and the depression that you’ve felt you didn’t
even want to be alive anymore?
Wilson: Yes, I have, but my friends constantly assure
me I’m going to be okay, that they’re on my side and
they’re my allies. They tell me they are my guardian
angels and they will help me through it.
Cooper: Some people who have a condition with voices
or depression worry that if they take medication for it,
the treatment will dull them creatively.
Wilson: Well, it does dull you a little bit at first, but
once you get used to it, it doesn’t bother your creative
process.
Cooper: Do you feel that you are able to produce more
creatively because you have some relief from your
symptoms?
Wilson: Absolutely. I used to go for long periods without being able to do anything, but now I play every day.
And finishing the album SMiLE two years ago was my
biggest accomplishment ever.
Friedman: Unfortunately, the general public really
doesn’t understand psychotic illness very well. They
don’t understand how someone can be intelligent,
thoughtful and creative and also have voices. They can’t
quite put that together.
Wilson: You’re right. I know there are a lot of brilliant
people who have my condition.
Friedman: And contrary to the common perception,
when you are walking down the street, most of the time
you wouldn’t know who has a mental illness and who
doesn’t. It’s not something you can glean from just seeing somebody. But I think the public has a particular
stigma about it. Has there been any situation where you
have felt uncomfortable talking about your illness?
Wilson: No, I don’t think so.
Friedman: Well, good,
because I think it is very
important—especially for people who are known for being
intelligent and creative—to let
the public know that there is
nothing necessarily scary about
somebody who has a mental
health condition.
Wilson: I say, “We shall overcome.” I use that all the time. We
shall overcome all of bad notions
people have, the preconceived
notions.
Cooper: Do you see a counselor
who helps you?
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Wilson: Yes, I’ve been seeing a psychiatrist once a week for 12 years now,
and he’s become a really close friend of mine. We talk and he helps me
out. He tells me, “Well when you hear the voices, why don’t you make a
joke and say to them, ‘How are you doing, Voices? How are you doing
today?’ You know, talk humorously to them.” I tried that out and it works a
little bit.
Friedman: So it sounds like a really important part of it for you is not just
getting the medication, but also having somebody to give you support and
practical techniques you can use.
Wilson: Absolutely.
Cooper: In terms of your medicine, is the regimen complicated?
Wilson: Not really. I take Luvox for depression, Klonopin for anxiety and
Clozaril to help with the voices and help me sleep at night.
Cooper: It sounds as though that’s a real successful combination for you.
Wilson: Oh yeah, it’s great medicine for me. It’s not too strong, and it
works.
Friedman: What are some of the other things that help you get through the
day, besides your music?
Wilson: Let me explain what my secret is. I walk five miles a day in the
morning, I eat really good food, I get a little sleep at night—four or five
hours, sometimes six if I’m lucky—and I use my love with people. I use
love as a way to get along with people.
Friedman: Explain to me what that means—using love as a way to get
along with people.
Wilson: Well, I sing for people and play songs for them on my synthesizer.
I talk to people about music and love.
Cooper: How do you handle bad times?
Wilson: With my will power—or, as I call it, Wilson Power. I go through
bad vibes, of course—everybody does—but I get through them because I
have just enough will in my last name to do that.
Friedman: (laughs) What about arguments? If you get into an argument,
does it stress you out?
Wilson: I used to argue with my wife several years ago, but we are cooling
out a little bit. It’s too stressful to argue.
Cooper: What did you use to calm down that arguing? What have you figured out?
Wilson: Love. These days, I try to focus on love. I try to straighten out our
problems with love.
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Cooper: So I understand you have really close relationships with your family.
[Wilson goes to the piano and sings the first few
stanzas.]
Wilson: Yes, they’re the light of my life. Nothing brings
joy into my life like my children. I have two girls by a
previous marriage who are in their 30s, and now I have
nine- and eight-year-old girls and a little two-and-a-halfyear-old boy. And they are all beautiful kids. My children and my music are my two greatest loves.
Friedman: Wow, that was fantastic!
Cooper: That’s great. Musically, what are you working
on now?
Wilson: I’m recording the song “Rave On,” originally by
Buddy Holly, and also “Proud Mary” by John Fogerty.
You remember “Rave On,” right?
Cooper: No stage fright with us?
Wilson: (laughs) No, not today.
Friedman: I understand you’ve also been asked to participate in the Staglin Music Festival, a concert to raise
awareness about mental health issues, and they want
you to speak a little about your experience with
schizoaffective disorder.
Wilson: Yeah, we are going to do an hour-and-a-half
F
rom the start of their marriage in 1968, wine connoisseurs Garen and Shari Staglin had a dream to own a vineyard in Napa Valley, California, and make world-class wines. Following successful advances in each of their
chosen careers, by 1985, the couple was able to buy a 62-acre ranch with 50 acres of vineyard space. Today,
the Staglin Family Vineyard has become one of the best-known vineyards in all of Napa Valley.
As the vineyard prospered, the Staglins looked for a way to share their success with others through contributing to good
works. Noting the need for research in mental health—the Staglins’ son Brandon was diagnosed with schizophrenia at
age 18—the family decided to create an annual fundraising event. Since 1995, Garen and Shari Staglin, accompanied by
Brandon, now 34, and daughter Shannon, 27, have hosted the annual Staglin Music Festival for Mental Health through
their nonprofit group, the Rutherford Charitable Organization, which raises money for mental health research.
Combining good wine and good food with good music, the Staglins’ festival—hosted on their very own Napa Valley
property—entails a mid-day concert for 500 attendees. This year’s featured performer is Brian Wilson, founding
member of The Beach Boys; previous years have included singer Roberta Flack, Grammy Award-winning jazz guitarist Norman Brown, musicians from the San Francisco Ballet and other noted artists. Following the concert, the
evening continues with a gourmet dinner for 300 guests and a sampling of more than 30 wines from Napa Valley’s
and Sonoma County’s best wineries. Each year, the dinner is prepared by a celebrity chef, crafted this year by Chef
Suzanne Goin of Lucques Restaurant in West Hollywood, the 2006 Beard Award for Best California Chef. Chef Greg
Cole from Cole’s Chop House in Napa will provide pre-concert hors d’oeuvres.
The festival also hosts top scientists who talk about their research. Daniel Weinberger, MD, internationally renowned
expert in the genetics of schizophrenia, kicks off this year’s gala with a lecture and discussion about physiological
brain disorders. Weinberger is based at the National Institute of Mental Health and is a member of the Scientific
Council of NARSAD: The Mental Health Research Association (formerly the National Alliance for Research on
Schizophrenia and Depression).
Over the 12 years of the festival, the Staglins have raised over $30 million for mental health research. As Garen
Staglin has noted, mental illness costs Americans $150 billion a year, but the country spends less than 100th of that
amount researching causes and cures. Says Staglin, “Private philanthropy is vital if we are to continue to make
progress.”
For more information about the Staglin Music Festival for Mental Health, visit
www.staglinfamily.com/festival_about.html
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concert at that show, trying to raise half-million dollars. We are very happy to be part
of that cause.
Cooper: It’s very important. I’ve noticed that you have been involved with many
other organizations as well.
Wilson: Yes, we’ve worked with the Carl Wilson Foundation, which helps people
who have cancer. It was founded in honor of my brother, who died of lung cancer
in 1998. And we raised a lot of money for the survivors of Hurricane Katrina. I
agreed to make a personal phone call to anyone who contributed at least $100. We
raised $250,000—that was a lot of phone calls!
Friedman: What a tremendous undertaking! It must have been so exciting for
people to get that phone call from you.
Wilson: Yes, they were thrilled. I told people that if they donated, they could
ask me any question they wanted and I would answer it.
Friedman: I know that you had just performed at Jazzfest in New Orleans a few
months before the hurricane hit. It must have been devastating to think about
all the loss in that great city you’d just visited.
Wilson: Oh, it was terrible. When it happened I was so concerned about
everyone there.
Cooper: Have you been back to New Orleans since that time?
Brian: No, unfortunately I haven’t
Friedman: I also saw that you were named the
2005 Person of the Year by the organization Music
Cares, a group that helps provide mental health
treatment for musicians who can’t afford it—a great
example of the industry taking care of its own.
Wilson: Yes, I was so honored to receive that award.
This year’s winner was James Taylor.
Friedman: Of course, he’s another person who has
been through a lot of depression and has talked about
how important treatment has been for him to be able
to do what he wants to do musically.
Cooper: So he has Wilson Power, too!
Wilson: (laughs) Yes, more Wilson Power.
Friedman: It sounds as though you’ve really worked
through your stage fright and really get a lot out of
performing these days.
Wilson: Yes. I was nervous my first couple of years of
performing solo—I didn’t think I’d ever be able to perform on stage again. But I finally overcame my fear.
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Friedman: The public is surprised sometimes about performers who get nervous going on stage. A couple of
years ago, we interviewed Donny Osmond, who also
had stage fright so bad that he thought he was going to
have to quit one of his most successful shows, Joseph
and the Amazing Technicolor Dreamcoat.
Wilson: Really? He was going through all that?
Friedman: He said it was paralyzing. And I remember
seeing him in that show, right about the time it was the
worst for him—and of course he was wonderful. You
would never have known how much agony he was going
through. He’s outwardly so outgoing, but inside he was
tormented by anxiety in a lot of social situations.
Wilson: Is he better now?
Friedman: Yes, he got some good therapy, and now he’s
a big advocate for other people who have anxiety problems. In your case, after so many years of not performing in public, what do you think the turning point was
for you?
Wilson: In 2004, when we premiered SMiLE in London.
That was the big turning point.
Cooper: What about it made it easier for you to get onto
the stage again?
Wilson: Well, we were so well received that it made
me feel confident about my concerts.
Cooper: So you needed some really positive
reinforcement.
Wilson: Yeah, I needed some support from my
fans to keep me going.
Friedman: What sorts of things get you
impassioned now, beyond your music and
your family?
Wilson: Humor. It lightens my day when
people are funny.
Cooper: Do you have a favorite joke?
Wilson: No, but I have a favorite
prayer: God grant me the serenity to
accept the things I cannot change, the courage
to change the things I
can, and the wisdom to
know the difference.
Isn’t that beautiful?
That’s the Alcoholic’s
Anonymous prayer.
Cooper: Do you participate in 12-step
programs?
Wilson: I went to
about 40 AA meetings, but I was too
afraid to talk. I was so
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Wilson speaks with ABILITY Magazine’s Chet Cooper and Gillian Friedman, MD
Above: Wilson sings and plays piano to make them feel welcome in his home
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scared when my turn came that my voice started shaking. But after a few minutes I was okay.
Wilson: I’d be a major league baseball player.
Cooper: Did you play well?
Friedman: You mentioned that you first started hearing
voices after taking some psychedelic drugs. What happened with your drug use after that?
Wilson: Oh yeah, I played a lot of ball. I was really,
really good.
Wilson: Well, I took a lot of amphetamines and a lot of
downers. The cocaine and marijuana and all the rest of
the stuff I took really messed with my brain. I couldn’t
tell reality from fantasy. Drugs will mess with your
head! If there is one thing I could go back in my life and
change, I wouldn’t have taken drugs. But it’s too late to
turn back now.
Cooper: What position?
Cooper: Was it difficult to get off of them?
Wilson: (laughs) No. I am happy with things the way
they are.
Wilson: Yes, it took some will power and some strength.
It mostly took the help of my friends.
Cooper: How long have you been clean now?
Wilson: For about 20 years.
Friedman: Fabulous. Do you have any routine that
keeps you off the drugs?
Wilson: Mainly, I don’t hang out with people who take
drugs.
Friedman: That’s so important. You know, the mantra of
all of Alcoholics Anonymous and Narcotics Anonymous
is people, places and things. If you want to stay clean,
steer clear of the people you did drugs with, the places
you did them, and any things that make you think of
drugs. I think you hit upon the one thing that’s
most difficult for people with drug problems
when they’re trying to get sober—having to
form a whole new set of friends sometimes.
Wilson: Center field. I had a good arm—I could throw
really well.
Friedman: Do you ever have any regrets about not
being able to pursue your baseball career?
Cooper: Well, your fans are obviously happy you didn’t
lean towards baseball. And besides, your passion for
music seems to be quite therapeutic for you.
Wilson: Yes, definitely. And to be honest, your asking
me about the problems I have in my head—that was
therapeutic. Thank you very much.
Friedman: Thank you for sharing that Wilson power
with us!
foreword by Dahvi Fischer
Wilson: I think that’s right.
Cooper: Was there anything else that you ever
wanted to do with your life?
Wilson: I wanted to have a bigger appetite.
Friedman: A bigger appetite?
Wilson: (laughs) Yeah, I didn’t eat enough food in my
life. I needed a bigger appetite.
Friedman: (laughs) No, seriously, have you ever wondered what you would have taken up if you hadn’t
become a musician?
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Jason is a 19-year-old college student. His friends notice
that he begins staying up all night, not just studying for
exams but also writing furiously in his journals. At first
they admire his spurt of creativity, but then he begins
looking disheveled and has a hard time remembering to
shower, brush his teeth or comb his hair. He seems a
flurry of activity, telling them he is launching an Internet business. At the same time, they notice him putting
black coverings over his windows and pulling up some
of his floor tiles. When they ask what he is doing, he
appears anxious and finally reveals he is looking for
hidden cameras.
Then just as suddenly, one day Jason appears to lose his
energy. He stays in his room, skips meals and neglects
his classes. Eventually he stops opening his mail or
answering his phone. When his friends visit he appears
distracted and has difficulty answering their questions,
and he sometimes turns to the other side of the room as
if hearing something that’s not there.
Jason’s parents help him get a medical excuse for the
rest of the semester, and he spends the subsequent term
at home. When he returns to his old campus the next
year, he no longer appears either frenzied or withdrawn.
He tells his friends he is being treated for schizoaffective disorder.
So what is schizoaffective disorder? Present in about
one in every 200 people, schizoaffective disorder produces ongoing struggles not only with mood symptoms
(as in depression or bipolar disorder), but also with
psychotic symptoms—disturbances of reality testing.
Psychotic symptoms can include hallucinations (voices,
apparitions or other false sensory symptoms), delusions
(fixed false beliefs) or disruptions of logical thought, as
well as social withdrawal and difficulties with planning.
In schizoaffective disorder, these psychotic symptoms
continue to occur even during periods when mood has
returned to normal.
Psychotic symptoms are also present in schizophrenia,
and schizoaffective disorder is believed to lie on a continuum between mood disorders and schizophrenia, with
symptoms of both. Because disturbances of reality testing can have serious consequences, schizophrenia and
schizoaffective disorder together are responsible for
more psychiatric hospitalizations than any other psychiatric illness.
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Since accurate diagnosis of schizoaffective disorder
requires closely observing the pattern of symptoms over
time, the condition may initially be misdiagnosed as
bipolar disorder or depression (if the diagnosis is made
during a mood episode), or as schizophrenia (if the diagnosis is made when mood is normal). Consequently,
continued re-evaluation is important for all of these illnesses to make sure the initial diagnosis is correct. With
schizoaffective disorder, two different categories of
symptoms must be addressed—often with a combination of medications—for treatment to be successful.
Good treatment involves both medical therapy to relieve
mood and psychotic symptoms as well as psychological
and social therapies to address many of the accompanying difficulties people with schizoaffective disorder frequently face—such as higher rates of unemployment,
poverty and homelessness.
Fortunately, today there is a wide range of antidepressant, mood stabilizing and antipsychotic medications,
with dozens more under development. Consequently,
patients have a good chance of finding a successful
combination with a minimum of side effects. Unfortunately, however, only a minority of people with
schizoaffective disorder continue medications after their
first year of treatment, so relapse and repeated hospitalization are common.
But beyond medications, social interventions like group
therapy, case management and family support are vital
for rehabilitation. Traditional insight-oriented psychotherapy is not generally thought to be helpful, with
better results from supportive and practical interventions
that focus on real-life problems and planning, interpersonal interactions, social and work roles, recreation and
cooperation with drug treatment.
by Gillian Friedman, MD
For more information about diagnosing, treating and living
with schizoaffective disorder and other mental health
conditions, visit
National Alliance on Mental Illness
www.nami.org
National Mental Health Association
www.nmha.org
www.healthyplace.com
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B
56
y all standards I had it all. I had been married for
three years to a wonderful man, Mark Leder. We
were living in a home we had built when we
were first married. My two-year-old speaking, training
and consulting business was doing well. Life was plump
with promise! Then all of this changed on June 13,
1998.
Hall at The Ohio State University Medical Center for
inpatient rehabilitation. I learned how to dress, get out
of bed and roll around the building in a wheelchair.
After spending five weeks in rehabilitation I was faced
with another tough transition—going home.
During a bicycle ride on our wedding anniversary weekend, a three-and-a-half ton tree suddenly collapsed and
came crashing down on top of me. Mark caught sight of
the tree when it was halfway to the ground. He tried in
vain to warn me. I lay on the trail unconscious as Mark
and two others managed to leverage the tree just enough
to get me out from under its hold. That’s when I woke
up and asked Mark, “What happened?”
The dream home that Mark and I had built in 1995 had
become more of a nightmare. When we built it, we
expected to live there for an unlimited time. Now I was
face to face with steps at the front porch that I couldn’t
climb. Family and neighbors had to build a temporary
ramp so Mark could get me into the house. Eventually,
an electric lift was installed at the front door so I could
get in and out on my own.
Soon I was taken by helicopter to the Grant Medical
Center trauma unit in Columbus, Ohio. When I woke up
in intensive care, Mark broke the news to me: “You
have a spinal cord injury.” I had undergone four-and-ahalf hours of surgery to repair my broken back and
neck, requiring a bone graft and insertion of two spinesupporting metal rods.
Once inside my home, I was faced with more obstacles.
The stairs to the second story and basement made those
areas inaccessible to me. Doors needed to be removed so
I could enter the master bath and shower area. I couldn’t
get into the bathtub without someone else’s assistance.
The laundry room door was removed to allow me access.
Kitchen wall cabinets were beyond my reach.
Five days after my injury, I was transported to Dodd
Eight years after my injury my frustration continues to
ABILITY
HOME HATH NO FURY
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Rosemarie Rosetti using a reacher in her current home (top
left) and planning her new universally designed home
mount as I tolerate these inaccessible conditions. I get
angry doing the laundry as I bang my wheelchair into
the washer, dryer and walls in the tight laundry room.
The process of taking clothes out of the washer is prolonged since my washer has a lid at the top and I can’t
reach down into the tub to remove the wet clothes. I
must use a reacher to get clothes out, one sock at a time.
I know a front loading washer will make this job a lot
easier in my next house.
Since I am the cook of the family, I need access to my
appliances, pantry and cabinets. It is difficult reaching
items out of my freezer, since it is located on top of the
refrigeration compartment. The bottom-hinged oven
does not allow me safe access as I remove a baked
chicken from the oven. The items in the top of my
pantry often fall on my head when I try pulling them out
with the reacher, so I have learned to store only lightweight items like crackers and cereals on the top shelf.
In the wall cabinets, I can reach items only on the bottom shelf, so I rely upon Mark to get items off the upper
shelves. Since my injury, Mark and I have been planning to build a home that would better accommodate
both of us—a process that has taken longer than we
originally intended and has taught us a lot about the
importance of finding the right resources.
UNIVERSAL DESIGN AWARENESS
I first became aware of universal design housing while
reading a magazine about a woman who used a wheelchair and had designed her kitchen so she could roll
under her sink and cooktop. Encouraged by this magazine article, I devoted my time to research, making
trips to the library, searching the Internet, speaking
with others who used wheelchairs and visiting with
our local independent living center director. As I
learned more about universal design, I came to understand that it is more than just a kitchen design—it is
for the entire house and landscape, and it not a design
method just for people with disabilities. Universal
design frames construction of products, places and services so they can benefit the widest possible range of
people in the widest range of situations without the
need for special or separate design. The more that
homes and other buildings are designed from the
beginning with use by everyone in mind, the more
individuals they will work for without expensive redesign and renovation.
Mark and I visited homes built by people who used
wheelchairs and took photos and extensive notes on
which features limited accessibility for the owners and
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which features worked well. After months of information collection, Mark began to sketch out a floor plan
for our new house.
FINDING THE LOT, BUILDER AND ARCHITECT
The home-building process began with choosing a location. We wanted to live in metropolitan Columbus,
Ohio, so we began to drive around looking for the ideal
location. We found a new subdivision where two
builders had several lots available. However, we became
discouraged because each builder had only one ranchstyle floor plan to offer.
Our needs analysis of space within the home revealed
these floor plans were not adequate for us. Our current
home is 2,200 square feet. Mark and I each have an
office in our home. The new home needed to be significantly larger to accommodate wider hallways and larger
bathrooms, kitchen, master closet, laundry and home
offices.
Based on referrals, we choose C.V. Perry as our builder
and put a deposit on a lot. Our builder told us we could
modify his existing floor plan by erasing all interior
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walls and redrawing a new floor plan within the original
house footprint. As Mark and I attempted to modify the
plan, it quickly became apparent that the necessary
adaptations were too numerous, and we began to search
for an architect. We contacted our friends and our local
independent living center, Ohio Bureau of Vocational
Rehabilitation, for architect recommendations.
Our builder also recommended an architect. When I
asked this architect, “How would you approach the
design of the kitchen for our universal design home?”
he answered, “I would let the cabinet company lay out
the floor plan.” I immediately knew that if he was going
to delegate the entire kitchen design to the cabinet company, this architect was not experienced.
A second recommended architect sent his resume and a
summary of the projects he had completed. I asked for
his references and called three of them. One of them, a
woman who used a wheelchair had recently hired him to
remodel her bathroom, indicated she was still not able to
reach any of the electrical outlets and would not recommend him.
A third architect was located out of state, making
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communication difficult and costly. It became obvious
that our project would require face-to-face conferences.
We interviewed a woman who had designed her own
home using universal design features, but she was not
an architect. We realized that our project would need an
architect to officially stamp any final plans. Our search
for a registered architect continued.
sized each room based on our furniture placement and
pathways of travel for my wheelchair. We considered
point of use when locating appliances in the rooms and
rooms within the house. Finally, we detailed the exterior
shell of the home. Throughout the process, we looked
for space wasters like a foyer or hallway that was too
large.
A colleague recommended architect Patrick Manley,
RA, AIAA. Manley came to our home with his construction manager and feng shui design consultant,
Cathy Van Volkenburg. He brought us his reference list
and described previous projects where he worked on
ADA-compliant housing projects, as well as residential
universal design. I called his three references and got
glowing reviews! We had our man!
The new house will have 3,500 square feet of space on
the main floor, consisting of two bedrooms, two home
offices, two-and-a-half bathrooms, a kitchen, a great
room, a laundry/wardrobe and a library in the hallway.
There will also be a full basement, as well as space for
four cars in the garages.
THE HOUSE-DESIGN PROCESS
In the next few months, we held several meetings with
Manley in which we tried to shoehorn our space needs
into the builder’s existing house footprint. We realized
we were spinning our wheels. The only logical solution
would be to create a unique floor plan from scratch.
We monitored the square footage to keep the costs lower
and designed from the inside out. That is, first we positioned the rooms in relation to each other. Then we
Reading blueprints was a learning experience for me. I
needed help comprehending the architectural symbols.
For example, throughout the blueprint I saw several red
circles and asked Manley what they represented. “Those
are five-foot-diameter turning dimensions for your
wheelchair,” he responded.
At times it was difficult for me to envision the layout of
rooms. Symbols for the kitchen appliances had to be
explained. When I needed more explanation, Manley
would draw a sketch of the elevation. We constantly
reviewed my need for access to storage areas and work
surfaces.
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Rosetti with interior designer Anna Lyon
at the Parade of Homes
The kitchen and bathroom are the most critical design
areas in a home. To give these rooms expert consideration, we hired kitchen and bath designer and universal
design specialist Mary Jo Peterson, CKD, CBD, CAPS,
who lives in Brookfield, Connecticut. We met Peterson
at the National Association of Home Builders (NAHB)
International Builders’ Show in January 2005. She
worked with Manley on the kitchen and bath floor plans
and positioned the cabinets, appliances, plumbing fixtures and countertops. She also helped select all the
items for these rooms.
One of my best friends, Anna Lyon, is an interior
designer. She reviewed the floor plans and elevations
during the process and made suggestions for improvements. She also assisted us in drawing furniture to scale
on the floor plan. Currently we are working with her to
select the colors and finishes for the cabinets, flooring,
countertops and walls.
In August 2005, I became acquainted with lighting
design expert Patricia Rizzo from the Lighting Research
Center at the Rensselaer Polytechnic Institute in Troy,
New York. We worked together to deliver a NAHB
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seminar on the design and lighting for universal design
homes. As a result of our NAHB collaboration, she
offered the services of seven graduate students in the
school’s lighting design center, who produced a universally designed lighting system.
UNIVERSAL DESIGN LIVING LABORATORY—
A NATIONAL DEMONSTRATION HOME
At the end of many years of planning, Mark and I
have by necessity accumulated a vast sum of knowledge and experience about resources and pitfalls in
accessible home planning. Because all families want
beautiful, functional homes that will last through their
lifetimes, Mark and I have committed to making our
home available as a model for others. Termed the Universal Design Living Laboratory (UDLL), it will serve
as a national demonstration home for the building
industry and the public, showcasing universal design
principles. Beyond the interior design of the home, the
exterior landscape will also incorporate universal
design fundamentals, including a water garden feature. Resource-and-energy-efficient green building
methods, advanced automation technology, a healthy
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home construction approach and the design principles
of feng shui will also be demonstrated.
Mark and I are building the home with the help of many
corporate sponsors. These sponsors are providing specially selected products and services for the home.
The UDLL is receiving lots of national attention. Media
and press coverage is ongoing and expected to increase
once construction begins, which will likely bring visitors to the construction site. When the home is complete, tours will be given before Mark and I move in.
Once we move in, we will conduct tours of the home by
appointment only.
With regard to the lot we had originally selected in February 2006, Mark and I met with the homeowners’ association board of trustees to discuss the UDLL project.
Regrettably, we were told that the homeowners were not
in favor of our building on the lot out of fear that our
home would draw unwanted traffic into the area. They
were also opposed to the idea that it would house our
home offices. Suddenly, Mark and I had to scrap our plans
of building in that subdivision and look for a new lot.
After a few months, we located a lot that is not in a subdivision. When the real estate transaction is final, the floor
plans will be handed over to the builder for construction.
Once the home is completed, we will have reached a
milestone in our lives. We hope that others can learn
from and become inspired by our home, and that it can
serve as a catalyst for change in the building and design
community.
by Rosemarie Rossetti, PhD
Rosemarie Rossetti, PhD, is
an internationally known
speaker, trainer, consultant
and writer. Rossetti is building the Universal Design
Living Laboratory in metropolitan Columbus, Ohio.
This home will serve as her
residence and will become a
demonstration site to bring
about awareness of universal design to the public and
the building industry. She
can be reached at
614.471.6100 or
[email protected]
The Center for Universal Design at North Carolina
State University www.design.ncsu.edu/cud
The Universal Design Alliance
www.universaldesign.org
AARP
www.aarp.org/families/home_design
Adaptive Environments
www.adaptenv.org
Universal Designed “Smart” Homes for the 21st
Century by Charles Schwab
www.UniversalDesignOnline.com
Universal Kitchen and Bathroom Planning
by Mary Jo Peterson
www.mjpdesign.com
The Accessible Housing Design File
by Barrier Free Environments, Inc.
Building for a Lifetime: The Design and
Construction of Fully Accessible Homes
by Margaret Wylde, Adrian Baron-Robbins
and Sam Clark
For details about the Universal Design Living Laboratory,
visit www.UDLL.com
Beautiful Universal Design: A Visual Guide
by Cynthia Leibrock and James Evan Terry
For details about Rossetti’s speaking business, visit
www.RosemarieSpeaks.com
Elder Design: Designing and Furnishing a
Home for Your Later Years
by Rosemary Bakker
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dialysis centers willing to accommodate them. In imagining life on dialysis, their minds are usually filled with
images of plastic tubing, impersonal machines and—
worst of all—needles.
S
arah Lezotte’s kidney problems started in 1991 with
what felt like a case of the flu. Fifty-eight years old
at the time, she had never experienced any major
health problems before, but these flu symptoms were lasting longer than normal. So Sarah decided to see her primary care doctor, who discovered that she had early signs
of kidney failure. He referred her to a kidney specialist,
who drew a slew of blood tests, ordered a pile of x-rays
and ultrasounds, and finally biopsied her kidneys. Then
he sat Sarah down and told her the diagnosis: she had
vasculitis, a generic term for inflammation (itis) of the
blood vessels (vasc). Many diseases cause vasculitis, the
best known being lupus. But Sarah did not have any of
the diseases that typically cause vasculitis—she didn’t
have lupus or Sjögrens syndrome or polyarteritis nodosa.
She didn’t have scleroderma or sarcoidosis or giant cell
arteritis. Instead, she was stuck with the vaguest of all
diagnoses—plain old vasculitis—as if she had cancer but
no one could tell her what kind of cancer: “Lung cancer?
Breast cancer? Colon cancer?” the patient asks. “No,” the
doctor replies, “just cancer.”
Without a more specific diagnosis, Sarah was stuck with
some rather nonspecific treatments, such as prednisone,
which puffed her face up like the Pillsbury doughboy, and
Imuran, a chemotherapy drug that made her feel 90 years
old. She dutifully took her pills every day, but her vasculitis continued to wreak havoc with her kidneys. Within
three years, Sarah Lezotte began receiving dialysis.
What would it feel like to have kidney failure and be
forced to undergo dialysis to stay alive? To be hooked up
to a dialysis machine three times a week? Never to be able
to eat fruits and vegetables without worrying that you will
experience dangerous levels of potassium in your blood?
To fear that drinking more than 48 ounces of liquid in a
day will make you swell up like the Michelin man?
I have yet to take care of a patient who looked forward to
the initiation of dialysis, no matter how severe their
symptoms from failing kidneys. Prior to requiring dialysis, most experience years of progressive kidney failure.
They watch their blood pressure and take their medicines
in hopes of delaying the need for dialysis. Most recognize
that dialysis will dramatically change their lives, forcing
them to squeeze 15 hours of treatment time into their
weekly schedules and to forgo travel unless they can find
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People with progressive kidney failure are not alone in
assuming that life on dialysis must be dismal. When my
research team asked healthy people to imagine that they
had end-stage kidney failure, they predicted that such an
illness would leave them unhappy for the majority of
their waking hours. Many told us they would give up
more than half of their remaining life span to avoid
becoming a dialysis patient. A significant number said
they would rather be dead.
About the only group of people who think life on dialysis
is not miserable are those actually on dialysis. When my
team asked dialysis patients to estimate the percentage of
time they were in good, neutral or bad moods, they told
us they were in good moods a majority of the time,
extremely good moods 40 percent of the time and bad
moods less than 20 percent of the time. In fact, their selfreported mood estimates were indistinguishable from
those of a group of healthy people we interviewed
(matched to the patients by age, gender, race and education level). In other words, based on their self-reports,
dialysis patients were just as happy as healthy people.
Waste products coursing through their veins, a banana
cream pie away from a life-threatening potassium level,
and they were as happy as healthy people? It is easy to
question these glowing reports of life on dialysis. In fact,
we had paid dialysis patients to tell us about their moods.
Could receiving money from pleasant research assistants
in itself make people happy, thereby causing them to
overstate how happy they are?
GLOBAL HAPPINESS REPORTS VERSUS
ACTUAL MOMENT-TO-MOMENT MOOD
Pleasure and pain are not remembered the same way they
are experienced. People’s memories are disproportionately influenced by peak experiences and by whether their
experiences have good or bad endings. As a result of
these faulty rememberings, researchers are increasingly
relying on novel ways of capturing people’s true momentto-moment experiences. In fact, my research team was
skeptical enough of the happiness reports we received
from dialysis patients that we sent each one home with a
shiny new personal digital assistant (PDA) to find out
how happy they really were. The PDAs were used to collect mood data over the course of one week.
We programmed the PDAs to beep at random intervals
every 90 minutes or so for a week (during waking hours)
to ask people about their moods. “Thinking back to right
before this PDA beeped, what was your mood? How
happy were you? How anxious, depressed, frustrated,
joyful?” We gave PDAs to the same two groups I
described earlier, the dialysis patients and the healthy
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controls who had reported happiness levels practically
identical to each other. By collecting such data over the
course of a week—out of the presence of our moodelevating research assistants and including those early
morning and late night hours when people might be
emotionally overwhelmed by their health problems—we
could find out whether people were as happy moment to
moment as they told us they were overall.
Sarah Lezotte was one of the dialysis patients who participated in our PDA study. To learn more about how her
kidney problems affected her life, I visited her several
months after the study in her rural Michigan home. Sarah
is a tiny, energetic woman, with short brown hair that
doesn’t look gussied up and a quick smile that doesn’t
look forced. Despite her diminutive size, she does not
look as frail as you would expect from someone who has
struggled with kidney disease for more than a decade.
She told me that when she first developed kidney problems in the early 1990s, she chose to receive a different
type of dialysis called peritoneal dialysis (PD), a form of
treatment in which her own body was turned into a dialysis machine several times a day. To do this, a surgeon
implanted a tube into Sarah’s abdominal wall. The inside
of the tube nestled underneath her skin but above her
peritoneal membrane, a layer of connective tissue that
separates her intestines from the lower layers of fat
underneath her skin. Sarah’s peritoneal membrane acted
like a sieve. She would pour one-and-a-half liters of fluid
through the tube, which would settle in underneath her
skin but above her peritoneum. Waste products in Sarah’s
bloodstream would drift into her peritoneal space and
bump into the dialysis fluid hanging out there. The dialysis fluid would equilibrate with waste products from her
bloodstream, thereby drawing the toxins out of her blood.
Four hours later, Sarah would drain the dialysis fluid and
all the waste products within it and then pour in another
one-and-a-half liters of clean dialysis liquid, starting the
process all over again. She went through this process four
times a day, with each filling and draining taking up
another hour, leaving her a few hours of wiggle room to
get in all four treatments within a 24-hour period. Then
she would wake up the next morning and start all over
again.
“It was hard for me to be very active when I was on PD,”
Sarah told me. “With all that fluid inside me, I felt halfpregnant all the time, and the pressure on my stomach
gave me pretty bad heartburn most of the time. When
you’re on PD,” she continued, “you have to slice your life
up into four-hour intervals, because that’s how long you
have until you need to exchange the PD fluid. So you can
go out to dinner or you can go out to a movie, but you
can’t go out to dinner and a movie.” Sarah described her
PD life to me almost matter of factly, with no sense of
bitterness.
When we asked her to estimate her typical mood, Sarah,
like most of the dialysis patients in our study, told us she
was in a good mood the majority of her waking hours. In
her case, she had been much sicker in the past, so such an
answer might be plausible. But most people with kidney
failure have many additional health problems. Like
Sarah, some have vasculitis, which can affect other body
parts. More commonly, people develop kidney failure
after years of diabetes or high blood pressure. Consequently, many experience not only kidney failure but also
heart disease, vision loss and damage to their feet and
legs from hardening of the arteries. Most of the dialysis
patients in our study who told us they were so happy had
several other health conditions to cope with besides kidney failure. Could they really be as happy as they said? It
was time to find out what their PDAs had to say about
their moods.
When we downloaded data from the PDAs, we discovered, just as we feared, that dialysis patients had overestimated how often they were in extremely good moods.
Rather than experiencing really good moods 40 percent
of the time, as they had told our research assistants, they
experienced such moods only 20 percent of the time.
I don’t believe these dialysis patients were lying to our
research assistants to cover up how miserable they were.
Instead, when they estimated what their moods were like
in a typical week, they probably thought back over the
previous week, and the extremely good moods they had
experienced came to mind more easily than the mildly
positive moods they had experienced.
Science is fun when you develop a theory to explain a
phenomenon and can test whether that theory fits with
other phenomena. For example, if the memorability of
extreme moods accounts for these overestimations, then
the dialysis patients should also overestimate the percent
of the time they spend in really bad moods—which is
exactly what we found. They predicted being in extremely
bad moods six percent of the time, while experiencing
such moods only one percent of the time—a result that
also punctures the theory that dialysis patients overstated
their good moods because they couldn’t acknowledge
how unhappy they were. Continuing this line of reasoning, we figured that if the memorability of extreme
moods accounts for these overestimations, healthy people
should also overestimate the percentage of time they
spend in really good and really bad moods. Which, again,
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is exactly what we found. People—whether healthy or
sick—predicted they would experience extremely good
and bad moods a smaller proportion of the time than they
actually experienced such moods. The PDA method was
proving to be a nice way to compare people’s actual
moods to the moods they predicted, revealing that people
do not have perfect insight into their emotional lives.
So what did the PDAs tell us about how happy these two
groups of people were? Both groups had estimated that
they were in good moods approximately two-thirds of the
time, with some of their predicted moods being extremely
good and some being only mildly pleasant. They had
overestimated the frequency of the extremely good
moods. But had they been wrong to say that they were in
good moods the majority of the time?
No. Just as they had predicted, dialysis
patients reported being in good moods
approximately two-thirds of the time.
In fact, they reported strikingly similar
levels of happiness as healthy people,
as well as similarly low levels of anxiety and depression. Based on their
moment-to-moment moods, then, dialysis patients were indistinguishable
from healthy people. It appears that
when these dialysis patients told us
they were happy the majority of the
time, they knew what they were talking about.
WHY IS IT SO DIFFICULT TO
IMAGINE DIALYSIS PATIENTS
BEING HAPPY?
Dialysis patients are generally happy,
and yet few of them would have predicted this could be the case. The
general public imagines life on dialysis as being filled
with unhappiness, and yet in our study the dialysis
patients were just as happy as healthy people. Why is it
so hard to imagine that these dialysis patients are happy?
When people imagine unfamiliar circumstances, they
often focus their attention too narrowly on the unique
aspects of these circumstances—the parts of their lives
that would change—without considering the many ways
their lives would be unaffected by the new circumstances.
Psychologists call this phenomenon a focusing illusion.
Imagine, for example, that you are a high school senior
choosing between attending two similar universities, one
in the upper Midwest and the other in Southern California. Where do you think you would be happier? If you
are like most people, you would expect to be happier in
California where you would be able to enjoy year-round
sunshine. Yet when psychologists David Schkade and
Daniel Kahneman measured the happiness of college students in California and the Midwest, they found no difference. Both groups of students were equally happy.
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When comparing college life in California and the
Midwest, most students focus their thoughts on an obvious difference between the two locations—the weather—
ignoring all the other parts of college life that would
influence their moods. Imagining life in California, Midwesterners envision beach parties and scantily clad
classmates. Thinking about life in the Midwest, Californians imagine flat landscapes and parka-clad coeds. Yet
most of college life has nothing to do with bathing suits
or parkas. Students enjoy football games and music
recitals and suffer through organic chemistry labs and
8 a.m. exams, whether they live in California or the Midwest. In fact, weather does not affect people’s moods as
much as they anticipate, with good weather primarily creating positive moods only among those who spend the
majority of their waking hours outdoors.
The same kind of focusing illusion also
influences the way people think about
illness and disability. When imagining
paraplegia, for example, many people
without paraplegia focus on what it
would feel like to get around in a wheelchair or to lose the ability to enjoy
favorite pastimes; they do not think
about all those aspects of their lives that
would be unaffected by paraplegia, such
as their ability to enjoy a television
show, a good conversation or a delicious meal. When imagining dialysis,
they focus on needles, blood-filled
tubes and 12 hours a week of being
attached to a machine, ignoring the
other 150 hours of the week when they
would not be at the dialysis center. And
they overlook the social companionship
they are likely to experience at the
dialysis center.
But are focusing illusions inevitable? Most experts don’t
think so. For example, psychologists Daniel Gilbert and
Timothy Wilson have shown that college football fans
overestimate how much the outcome of the game will
influence their moods over the following week, because
the fans focus too narrowly on the game without thinking
enough about all the intervening events that will affect
their moods later in the week. Yet these two researchers
have also shown that this kind of focusing illusion can be
avoided. When football fans fill out an imaginary diary
describing the week they expect to experience following
a football game, they think more broadly about all the
events in a typical week, other than a football game, that
would influence their moods. As a result, they no longer
mistakenly predict how strongly the football game will
affect their moods.
CAN DEFOCUSING HELP?
Encouraged by these results, my colleagues and I set out
to see if we could rid people of a focusing illusion when
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they imagined life with a disability. We tried to defocus people, to get them
to think more broadly about how disabilities would affect their lives. Worried that people would focus too narrowly on how specific aspects of their
lives would be affected by experiencing paraplegia from a below-the-knee
amputation, we asked them to think about how such disabilities would affect
a broad range of life domains, such as their work, spiritual and family lives.
We theorized that these broader thought processes would make people realize that the disability in question would have little effect on their lives as a
whole.
As expected, we found that many viewed these disabilities less negatively
after thinking more broadly about their lives, commenting on how our defocusing exercise helped them think more thoroughly about what life with a
disability would be like. But to our surprise, for every person who viewed
life with a disability less negatively after our exercise, two or three others
viewed the disability more negatively. For most, the more they thought
about life with a disability, the worse they imagined it would be.
People overestimate the long-term emotional impact of illness and disability,
imagining that kidney failure or a spinal cord injury will make them miserable, when, as we have seen, the majority of people with kidney failure and
spinal cord injuries are happy. Indeed, there seems to be no easy way to get
people to think more broadly (or accurately) about what life with such circumstances is really like.
As mentioned earlier, I met with Sarah Lezotte three months after she had
participated in our PDA study in hopes of gaining some insight into how
dialysis patients manage to find happiness despite having such poor health.
What I didn’t mention was that by the time I met with Sarah, she was no
longer a dialysis patient. Two months after completing our PDA study, she
received a kidney transplant. Her health was now better than it had been in
more than a decade, and she was feeling more energetic and optimistic than
she had in years. I was delighted about her good fortune, but I still wanted
her perspective on how she had been able to find so much happiness during
her long struggle with kidney failure. So I was surprised to learn now that
she did not have very positive memories of her life on dialysis.
“Dialysis days were essentially lost,” she told me. She explained that she
would drive 40 minutes to the dialysis center, remain there for three-plus
hours on dialysis, and then drive 40 minutes back home. By then, her morning would be gone, and after a brief lunch she would settle down for a nap,
exhausted by the long commute and the tiring dialysis session. But the truly
hard part was the wiped-out feeling she got after the session.
Sarah had given me insight into how dialysis had affected the rhythm of her
day-to-day life, but I still did not have a feel for how it had affected her overall
mood. “Oh, I hated being on dialysis—it was miserable,” she said.
Miserable? I was surprised because I had her data. I knew Sarah was happy
during her dialysis days, or at least I knew that she said she was happy when
she carried around our PDA. I reminded her that she reported being happy
the majority of the time. “Yes, I believe you,” she said. “But you see, unlike
other dialysis patients, I had hope for receiving a transplant. I don’t know if
I would have been so happy if it hadn’t been for that hope”—a happiness,
by the way, that she had largely forgotten about a few minutes earlier when
describing her life on dialysis.
HINDSIGHT ISN’T ALWAYS 20/20
As we’ve discussed, healthy people frequently underestimate how happy
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they would be if they experienced serious illness. But
when I met with Sarah Lezotte, I witnessed another type
of misperception: having been on and off dialysis for the
previous 10 years, she now seemed to have an overly
negative view in retrospect of what it had been like to
experience kidney failure. And so, rather than gaining
insights about how she found happiness despite such a
serious illness, I found instead that her instinct was to
minimize just how happy she had been. With the success
of her new transplant, Sarah was quite happy now.
Indeed, after all she had gone through to complete the
transplant, she assumed she must be much, much happier
now than she had been before the transplant.
Sarah Lezotte is by no means unusual in being somewhat
out of touch with her own emotional life. People are so
convinced that happiness is a matter of circumstance that
they forget how much they are actually able to adapt to
their circumstances. I should have expected Sarah’s memory to be tricked in this manner. We had already discovered in our PDA study that people have powerful intuitions about how severe illness ought to affect them, and
that these intuitions shape the way they perceive their
emotional lives. For example, we asked our dialysis
patients to imagine what their moods would have been
like if they had never experienced kidney disease. They
predicted that they would live in an almost perpetual state
of glee, a level of happiness significantly higher than the
moods our healthy control subjects actually experienced.
These overestimates occurred because people had trouble
imagining that big changes in their lives would not have
large emotional consequences.
THE EFFECT OF TIME
Is there anything we can do to improve the way people
think about circumstances they might encounter? My
research team has found that people’s predictions about
the emotional effects of illness and disability change
when they are prompted to think about how their emotions are likely to change over time. We asked a group of
people to imagine how happy they would be if they had
paraplegia. Then we asked them to think about a terrible
event that had occurred in their lives six or more months
ago. Did their emotions get stronger or weaker over time?
Did the event influence their long-term moods more or
less than they would have guessed? Do they think the
experience of paraplegia would get stronger or weaker
over time? After a few such questions, we asked them
once again to imagine how happy they would be if they
experienced paraplegia. Their estimates changed
dramatically—they predicted much more happiness than
they had previously predicted after they had thought
about their own recent mishaps. People do recognize that
strong emotions generally fade over time. Ask them to
imagine their moods one week, one month and one year
after experiencing a spinal cord injury, and they estimate
dramatic improvements over time. They know that adaptation happens, but many do not think about adaptation
unless prompted.
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When I asked Sarah Lezotte to think back on her dialysis
days, she focused in on those aspects of her life affected
by dialysis—that same focusing illusion I discussed earlier, the one that is so hard to get rid of. She also seemed
to dismiss the idea that she had adapted to life on dialysis. But she, too, could be prodded to think about her
emotional resilience. When she recounted her past misery and lamented about her inability to go on if not for
her hope for a transplant, I asked her to think about what
she would have done if she found out she could not
receive a transplant. She quickly reappraised her situation. “I imagine I would have found some way to deal
with that, but I don’t know how,” she replied. People
intuitively grasp the idea of adaptation. They just may
not know how it happens.
Sarah knows more about what it is like to live with kidney failure than I will ever learn. Yet despite this
knowledge, gained through such prolonged experience,
she is susceptible to the same tricks of memory and
imagination as the rest of us. What was it like to be on
dialysis? I do not think she can answer that question
very easily. Perhaps if I had filmed a day in her life
while she was on dialysis and played it back to her, she
could have given a more accurate report of her emotional life at that time. But I am doubtful even that
would work. What would any of us make of such a
film? Would we watch ourselves brushing our teeth and
cleaning dishes and assume that we must have been
having a miserable day?
Sarah Lezotte is a remarkable woman. She has maintained an optimistic view of life despite everything she
has been through and plans to return to doing charitable
work once she recovers completely from her new kidney transplant. Sixty-eight years old, with the best
health she has experienced in a decade, she hopes to get
out of the house and give something back to the world. I
totally admire her for the way she has fought through all
her health problems. And I wish her the best of luck in
achieving her new goals. Meanwhile, I will try not to
think about the problems she might encounter en route
to the decade of charitable activities she envisions. I
don’t even want to consider the possibility that her new
kidney will fail, or that at the age of 68, some new illness will enter her life and prevent her from living out
her dream. Nor will I let myself think of the likelihood
that she will emotionally adapt to her kidney transplant—that she will soon get used to the joys of vegetables and bananas and iced tea, taking them for granted,
and, one day at a time, putting off that dream of doing
charitable work. I won’t let myself think about this. I
don’t even want to imagine the possibility.
The above excerpt is abridged from the book You’re
Stronger Than You Think: Tapping Into the Secrets of
Emotionally Resilient People, by Peter Ubel, MD, copyright
2006 by Peter Ubel and published by McGraw-Hill books.
Dr. Ubel is a professor of medicine and psychology at the
University of Michigan.
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