ABILITY Magazine Brian Wilson by ABILITY Magazine

Brian Wilson

7:55 PM

Vo l u m e 2 0 0 6

8/13/06

US $4.95 Canada $5.95

Brian Wilson cover Page 1

pgs, 2,3,5,7,11,23,27,75,76

ABILITY

8/11/06

1:33 AM

Page 2

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:34 AM

Page 3

ABILITY 3

TOC_BrianWilson-0810a

8/13/06

7:47 PM

Page 4

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

CONGRESSMAN ETHERIDGE — Volunteerism for All

HEADLINES — AT&T, A&E, Accessible Tent, Fibromyalgia HUMOR THERAPY— Global Warming

EMPLOYMENT — The ADA and People with Hearing Loss

GOOGLE — New Accessible Search

SHOSHANNAH STERN — Ready for Prime Time

FREEDOM FOR LIFE — Accessible Adventure

DR. ERNST KATZ — 70th Anniversary of the Jr. Philharmonic

ABILITY HOUSE — Volunteers with Disabilities Build Home

BRIAN WILSON — A Powerful Interview

STAGLIN FAMILY VINEYARD — Good Wine & Good Causes

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

Pres. Bush and Katz

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

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

UNIVERSAL DESIGN — How to Build Your Dream Home

BOOK EXCERPT — You’re Stronger Than You Think

EVENTS AND CONFERENCES

SUBSCRIPTION PAGE

Beach Boys’ Brian Wilson

John Noble, JD

INTERNET DIRECTOR Diana Lynn Jensen

MARKETING/PROMOTIONS Lisa Palmer Andrew Spielberg

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION

CORPORATE OFFICE

DISTRIBUTION

ADVERTISING

1001 W. 17th St. Costa Mesa, CA 92627 Tel 949.854.8700 TTY 949.548.5157 Fax 949.548.5966

Warner Publisher Services A TIME-WARNER COMPANY FAXON - RoweCom Library Services EBSCO - Library Services SWETS BLACKWELL

For advertising information visit abilitymagazine.com or call 949.548.1986

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. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, 1001 W. 17th St. Dept F, Costa Mesa, CA 92627; Volume 2006 Brian Wilson Printed in U.S.A.

John Cappello

EDITORIAL

Fax 949.548.5966 Editorial@ABILITYmagazine.com

NON-PROFITS

ABILITY Awareness Habitat for Humanity International

PUBLISHER

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:34 AM

Page 5

ABILITY 5

6,8,9,10,12,13,14,15,16,17

8/11/06

12:40 AM

Page 6

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 6

ABILITY

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! editorial@abilitymagazine.com Subject: Getting Involved

Target 7 Ad

8/11/06

2:55 AM

Page 7

ABILITY 7

6,8,9,10,12,13,14,15,16,17

8/11/06

12:42 AM

Page 8

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 8

ABILITY

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

6,8,9,10,12,13,14,15,16,17

8/11/06

3:54 AM

Page 9

$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

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

&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 ABILITY 9

6,8,9,10,12,13,14,15,16,17

8/11/06

3:55 AM

Page 10

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

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

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

ABILITY

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:36 AM

Page 11

ABILITY 11

6,8,9,10,12,13,14,15,16,17

8/11/06

12:58 AM

Page 12

HUMOR THERAPY

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

ABILITY

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”

6,8,9,10,12,13,14,15,16,17

8/11/06

12:59 AM

Page 13

The ADA and Workers Who are Deaf or Hard of Hearing

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.)

ABILITY 13

6,8,9,10,12,13,14,15,16,17

8/11/06

12:59 AM

Page 14

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-

ABILITY

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.

6,8,9,10,12,13,14,15,16,17

8/11/06

1:00 AM

Page 15

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 accommodationâ&#x20AC;&#x2122;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

ABILITY 15

6,8,9,10,12,13,14,15,16,17

8/11/06

1:17 AM

Page 16

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,

6,8,9,10,12,13,14,15,16,17

8/11/06

1:17 AM

Page 17

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

Shoshannah-0809a

ABILITY

8/11/06

2:07 AM

Page 18

Shoshannah-0809a

8/11/06

2:08 AM

Page 19

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 Showtimeâ&#x20AC;&#x2122;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 conformistsâ&#x20AC;&#x201D;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. ABILITY 19

Shoshannah-0809a

8/11/06

2:08 AM

Page 20

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.

Shoshannah-0809a

8/11/06

3:47 AM

Page 21

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 ABILITY 21

Shoshannah-0809a

8/11/06

2:10 AM

Page 22

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 22

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

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:37 AM

Page 23

ABILITY 23

Shoshannah-0809a

8/11/06

2:10 AM

Page 24

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. 24

ABILITY

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.

Shoshannah-0809a

8/11/06

2:11 AM

Page 25

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? ABILITY 25

Shoshannah-0809a

8/11/06

2:11 AM

Page 26

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. 26

ABILITY

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.

Shoshannah-0809a

8/11/06

2:12 AM

Page 27

Freedom For Life-FD-0809b

8/11/06

2:03 AM

Page 28

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

ABILITY

Freedom For Life-FD-0809b

8/11/06

2:04 AM

Page 29

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 ABILITY 29

Freedom For Life-FD-0809b

8/11/06

2:04 AM

Page 30

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.

ABILITY

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

Freedom For Life-FD-0809b

8/11/06

2:05 AM

Page 31

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

ABILITY 31

Katz-FD-0809c

ABILITY

8/11/06

1:51 AM

Page 32

Katz-FD-0809c

8/11/06

1:51 AM

Page 33

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

ABILITY 33

Katz-FD-0809c

8/11/06

1:52 AM

Page 34

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

ABILITY

Katz-FD-0809c

8/11/06

1:52 AM

Page 35

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

ABILITY 35

Katz-FD-0809c

8/11/06

1:53 AM

Page 36

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

ABILITY

Katz-FD-0809c

8/11/06

1:53 AM

Page 37

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

ABILITY 37

Katz-FD-0809c

8/11/06

1:54 AM

Page 38

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

ABILITY

Katz-FD-0809c

8/11/06

1:54 AM

Page 39

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

ABILITY 39

OahuArticle-FD-0809

8/11/06

1:30 AM

Page 40

Clockwise from top L: Mark Goffeney volunteers alongside ABILITY Awarenessâ&#x20AC;&#x2122; Director of Operations Judi Pennella; the ABILITY House take shapes; soldiers from Schoffield Barracksâ&#x20AC;&#x2122; 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 40

ABILITY

OahuArticle-FD-0809

8/11/06

1:30 AM

Page 41

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 ABILITY 41

OahuArticle-FD-0809

8/11/06

1:31 AM

Page 42

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

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:38 AM

Page 43

ABILITY 43

Brian Wilson-FD-0810b

ABILITY

8/11/06

1:42 AM

Page 44

Brian Wilson-FD-0810b

8/11/06

1:42 AM

Page 45

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. ABILITY 45

Brian Wilson-FD-0810b

8/11/06

1:42 AM

Page 46

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

ABILITY

Brian Wilson-FD-0810b

8/11/06

1:43 AM

Page 47

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 ABILITY 47

Brian Wilson-FD-0810b

8/11/06

1:44 AM

Page 48

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?

ABILITY

Brian Wilson-FD-0810b

8/11/06

1:45 AM

Page 49

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.

ABILITY 49

Brian Wilson-FD-0810b

8/11/06

3:28 AM

Page 50

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

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

ABILITY

Brian Wilson-FD-0810b

8/11/06

1:46 AM

Page 51

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.

ABILITY 51

Brian Wilson-FD-0810b

8/11/06

3:18 AM

Page 52

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

ABILITY

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

Brian Wilson-FD-0810b

8/11/06

1:47 AM

Page 53

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? ABILITY 53

Brian Wilson-FD-0810b

8/11/06

1:47 AM

Page 54

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. 54

ABILITY

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

Brian Wilson-FD-0810b

8/11/06

1:48 AM

Page 55

ABILITY 55

UDHome-FD-0810a

8/11/06

2:19 AM

Page 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

UDHome-FD-0810a

8/11/06

2:20 AM

Page 57

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 canâ&#x20AC;&#x2122;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 usâ&#x20AC;&#x201D;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 designâ&#x20AC;&#x201D;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 ABILITY 57

UDHome-FD-0810a

8/11/06

2:20 AM

Page 58

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 58

ABILITY

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

UDHome-FD-0810a

8/11/06

2:21 AM

Page 59

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. ABILITY 59

UDHome-FD-0810a

8/11/06

2:21 AM

Page 60

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 60

ABILITY

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

UDHome-FD-0810a

8/11/06

2:22 AM

Page 61

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 Rosemarie@UDLL.com

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

ABILITY 61

You're Stronger-FD-0810

8/11/06

1:58 AM

Page 62

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.

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

ABILITY

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

You're Stronger-FD-0810

8/11/06

1:59 AM

Page 63

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, ABILITY 63

You're Stronger-FD-0810

8/11/06

1:59 AM

Page 64

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. 64

ABILITY

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

You're Stronger-FD-0810

8/11/06

2:00 AM

Page 65

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 ABILITY 65

You're Stronger-FD-0810

8/11/06

2:01 AM

Page 66

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. 66

ABILITY

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.

nscd 67 Ad

8/11/06

3:05 AM

Page 67

ABILITY 67

Events/Conferences 0808

8/11/06

1:23 AM

Page 68

E v e n t s

ABILITY

C o n f e r e n c e s

Events/Conferences 0808

8/11/06

1:24 AM

Page 69

E v e n t s

C o n f e r e n c e s

ABILITY 69

Events/Conferences 0808

8/11/06

1:25 AM

Page 70

E v e n t s

ABILITY

C o n f e r e n c e s

Events/Conferences 0808

8/11/06

1:26 AM

Page 71

E v e n t s

C o n f e r e n c e s

ABILITY 71

Events/Conferences 0808

8/11/06

1:26 AM

Page 72

E v e n t s

ABILITY

C o n f e r e n c e s

Events/Conferences 0808

8/11/06

1:27 AM

Page 73

E v e n t s

C o n f e r e n c e s

ABILITY 73

Events/Conferences 0808

8/11/06

1:28 AM

Page 74

E v e n t s

ABILITY

C o n f e r e n c e s

pgs, 2,3,5,7,11,23,27,75,76

8/11/06

1:38 AM

Page 75

ABILITY 75

pgs, 2,3,5,7,11,23,27,75,76

ABILITY

8/11/06

1:39 AM

Page 76