US $4.95 Canada $5.95 Volume 2006 Brian Wilson Pgs, 2,3,5,7,11,23,27,75,76 8/11/06 1:33 AM Page 2

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US $4.95 Canada $5.95 Volume 2006 Brian Wilson pgs, 2,3,5,7,11,23,27,75,76 8/11/06 1:33 AM Page 2

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EDITOR-IN-CHIEF Chet Cooper

SR. HEALTH EDITOR Gillian Friedman, MD

HEALTH EDITORS Larry Goldstein, MD Karl Gross, MD

GUEST CONGRESSMAN U.S. Rep. Bob Etheridge (D-NC)

SR. EDITOR Jane Wollman Rusoff

EDITORS Dahvi Fischer Eve Hill, JD Noelle Kelly Aloha to Hawaii’s First ABILITY House Eva Meszaros Josh Pate 6 LETTER FROM THE EDITOR — Health and Happiness Maya Sabatello, PhD, JD Romney Snyder Paul Sterman 8 CONGRESSMAN ETHERIDGE — Volunteerism for All Jessica Tappin

CONTRIBUTING WRITERS 9 HEADLINES — AT&T, A&E, Accessible Tent, Fibromyalgia Sandy Herald Glenn Lockhart Rosemarie Rosetti 12 HUMOR THERAPY— Global Warming Pres. Bush and Katz Peter Ubel, MD

HUMOR EDITORS 13 EMPLOYMENT — The ADA and People with Hearing Loss Jeff Charlebois Gene Feldman, JD 16 GOOGLE — New Accessible Search WEB EDITORS Paul Kim Steve Mikailoglu 18 SHOSHANNAH STERN — Ready for Prime Time ART DIRECTOR Kristian Olson

28 FREEDOM FOR LIFE — Accessible Adventure GRAPHIC ART/ ILLUSTRATION The Need for Univ. Design The Need for Univ. Leah Demeter 32 DR. ERNST KATZ — 70th Anniversary of the Jr. Philharmonic Steve Mikailoglu

PHOTOGRAPHY 40 ABILITY HOUSE — Volunteers with Disabilities Build Home Steve Eichner Don Hagopian Otto Rothschild 44 BRIAN WILSON — A Powerful Interview Randy Tepper/Showtime Bob Young 50 STAGLIN FAMILY VINEYARD — Good Wine & Good Causes

Google’s New Search Google’s ADMINISTRATION COORDINATOR Jenifer Medramo

54 SCHIZOAFFECTIVE DISORDER — What You Need to Know DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

56 UNIVERSAL DESIGN — How to Build Your Dream Home INTERNET DIRECTOR Diana Lynn Jensen 62 BOOK EXCERPT — You’re Stronger Than You Think MARKETING/PROMOTIONS Lisa Palmer Andrew Spielberg 67 EVENTS AND CONFERENCES

Beach Boys’ Brian Wilson PUBLIC RELATIONS JSPR 74 SUBSCRIPTION PAGE EWSSTAND IRCULATION CONTENTS N C John Cappello Errata: The previous issue’s interview with Joe Montana highlighted his hypertension EDITORIAL awareness program Take the Fax 949.548.5966 Pressure Off...With Better [email protected] CORPORATE OFFICE DISTRIBUTION ADVERTISING Blood Pressure Control. His new hypertension educa- 1001 W. 17th St. Warner Publisher Services For advertising NON-PROFITS tion program through Novartis Costa Mesa, CA 92627 information visit ABILITY Awareness A TIME-WARNER COMPANY Pharmaceuticals is BP Tel 949.854.8700 abilitymagazine.com FAXON - RoweCom Library Services Success Zone. Habitat for Humanity International or call TTY 949.548.5157 EBSCO - Library Services Fax 949.548.5966 949.548.1986 SWETS BLACKWELL PUBLISHER C.R. Cooper

ABILITY Magazine is published bimonthly by C.R. Cooper Publishing, 1682 Langley Avenue, Irvine, CA 92614-5633 WWW ABILITYMAGAZINE COM (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. The views expressed in this issue may POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, not be those of ABILITY Magazine 1001 W. 17th St. Dept F, Costa Mesa, CA 92627; Volume 2006 Brian Wilson Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2006 ABILITY Magazine pgs, 2,3,5,7,11,23,27,75,76 8/11/06 1:34 AM Page 5

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Dear Readers, impact of disability on work performance? If so, what does that mean for changing their attitudes about Dr. Peter Ubel—whose latest book is excerpted in this employing people with disabilities? Treating us equally? issue of ABILITY Magazine—is pursuing happiness. Of Remembering to include us as volunteers, active com- course, so are the rest of us—it’s even stated in our munity members and friends? Constitution. Who doesn’t want to be happy? But as a scientist, Dr. Ubel is not satisfied with happiness as a Dr. Ubel acknowledges that our societal tendency for metaphysical goal. He wants to know the how and the mis-imagining can have negative implications: “I worry why of it. Particularly, how is happiness affected when that it affects how we interact with people with disabili- people develop a serious health problem or disability? ties and leads to stigmatization—that we find ourselves thinking, they’re just slow, unhappy, grouchy people and The answer is surprising to many people—in large part, I don’t want to be around them.” happiness isn’t affected. But he has also experienced that for some people, asso- With health problems and disability, just as with many ciation with someone who has a disability changes their other life challenges, humans are remarkable and cre- perspective. He talks about one of his friends, who ative adapters. And for each of us, most of the elements developed amyotrophic lateral sclerosis (also called that affect our mood on a moment-to-moment basis— ALS or Lou Gehrig’s Disease), a universally fatal ill- eating the foods we like, connecting with our families, ness. Early on, his friend noticed people withdrawing watching our favorite movies and TV programs and and gently confronted them. In response, many re- sporting events, laughing at good jokes—are completely examined their behavior and forced themselves to come independent of whether our legs or arms or kidneys to terms with their unconscious reactions. function at full capacity. Indeed, some of Dr. Ubel’s research subjects looked at disability as a positive force Similarly, one goal of ABILITY Magazine is to help all in their lives, an opportunity to refocus themselves on of us confront our assumptions and mis-imaginings, one the things they found really important. story at a time. The more we listen with a new ear—so to speak—to people’s experiences, the more likely we But he also found that the general public is notoriously are to hear what they’re really saying, not just what we bad at recognizing this. People dread developing a dis- expect them to tell us. ability. 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 Sincerely, that disability did not lead to dreariness—said they could not imagine wanting to live in their loved one’s circumstances. Gillian Friedman, MD Managing Health Editor This book gnawed at me, troubled me, proven to be that pea under the mattress keeping me up at night. Dr. Ubel Do you have an interesting story from your life? has proven with science what most of us in the disability Do you know someone who has made an impact in your community have long observed—people have a hard community? Do you have topics you would like to see in time understanding something they haven’t experienced. ABILITY Magazine? Get involved! If some people are so bad at imaging the impact of disability on happiness, are they as bad at imagining the [email protected] Subject: Getting Involved

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consider how some small adjustments in building style—like having a no-step entrance to a home and making the hallways and doors wide enough to accommodate a wheelchair—would be easy and inexpensive to consider for all homes, so that every one of us can have a home that will serve us well throughout our lifetimes, however our needs might change.

I am proud to welcome constituents who have disabilities to join us in building this house. So much good can Dear ABILITY Readers, be accomplished when our communities come together in volunteer service, and we don’t have a person to Each time I travel around my North Carolina district, a waste. I am glad to see the town of Benson, Habitat for community where I’ve lived nearly all my life, I enjoy a Humanity and ABILITY Awareness out there affirming welcome opportunity to connect with my constituents that everyone has a valuable contribution to make. I am and chat with my neighbors about the issues that affect grateful for the generosity of the corporate sponsors them on a day-to-day basis. In today’s housing climate, Genworth Financial, Inc. and Wells Fargo Home Mort- I often find that one of the most vital concerns raised is gage for not only bringing their financial assistance, but the need for decent housing for everyone. Homeowner- also facilitating a meaningful volunteer opportunity for ship is a cornerstone of the American dream, and I sup- their employees. And I applaud ABILITY Magazine for port extending this opportunity to as many people as its ongoing support of the ABILITY House project. possible. From opposing cuts in Section 8 vouchers to supporting efforts to end homelessness, throughout my I’d like to challenge communities across the nation to congressional career I have advocated that North Caroli- follow Benson’s example in assuring that everyone has na’s families—and families across the nation—deserve the opportunity to be both independent and included. safe, affordable housing. I applaud the public, private and nonprofit efforts that help them obtain this dream. Sincerely,

This month I am pleased to give my time as the hon- orary project chairman for just such an effort. The nonprofits ABILITY Awareness and Habitat for Humanity U.S. Congressman Bob Etheridge of Johnston County are joining forces to build an accessible home for Selma Smith, a vivacious and talented woman with quadriplegia who for six years has lived in a trailer too narrow to accommodate her wheelchair.

Recently I had the opportunity to visit Ms. Smith in her trailer, a residence that currently requires the strength of at least two people to carry her wheelchair up the steps to her front door. The doorways linking the trailer’s small rooms are too narrow to allow her wheelchair to pass, so she spends her whole day sitting in a small living room. This vibrant woman ought to live in a residence that she can enter and exit independently. She ought to have the full use of her home, not just one room of it. She ought to be able to go across the way to visit her neighbors and be able to participate in her community.

I am pleased that this month we are building Ms. Smith an ABILITY House—an accessible home built entirely by volunteers, many of whom also have disabilities. This has been a wonderful opportunity for all of us to

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$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 ACCESSIBLE VIDEO A&E PILOTS DESCRIPTIVE NARRATION he AT&T Foundation, the philanthropic arm of AT&T Inc., has announced a $1 million grant to &E Network has recently collaborated with The T the Community Technology Centers’ Network Media Access Group at WGBH to expand its (CTCNet), a national network of community A accessible programming with the availability of technology centers (CTCs) and other nonprofits that a descriptive narration track on the A&E web- provides technology access and education to underserved site for Touch The Top of the World, a film based on communities. This grant will provide new technology Erik Weihenmayer, the first blind climber to summit resources for people with all types of disabilities. Mt. Everest. The film debuted recently on A&E and stars Peter Facinelli (Six Feet Under, Fastlane, The CTCNet will collaborate with the Alliance for Technol- Scorpion King) and Bruce Campbell (The Adventures ogy Access (ATA), a national network of community- of Brisco County Jr., Homicide, The X-Files). based Assistive Technology Resource Centers, technology developers, community-based organizations Audio description of the visual elements of the film are and individuals, to upgrade technology services and available for the next month and a half via the A&E equipment at CTCs nationwide. Network website, where visitors can access an audio stream that includes moment-by-moment descriptions CTC staff will receive training on universal design and of the action in the movie, including gestures, cos- assistive technology to help them accommodate multi- tumes, settings, who is speaking and text that appears ple learning styles and abilities. The grant will also fund on screen. the purchase of assistive technology devices, ensuring that CTCs are able to serve everyone, including the 20 In 2001, Weihenmayer began his ascent up the tallest percent of the U.S. population that has disabilities and mountain in the world, Mt. Everest, but the film chroni- very few opportunities for technology training. cles his journey from much earlier in life when he was diagnosed with a genetic disorder that ultimately led to “Assistive technology is not just beneficial for people total blindness by the time he was 13. In the wake of with disabilities but has been proven to improve the the sudden death of his mother, he and his family began technology training experience for all, ensuring success taking treks into remote mountain areas to keep their in today’s economy,” said Kavita Singh, executive lives intact. Soon Weihenmayer was taking on greater director of CTCNet. challenges, including rock climbing, while finishing college and starting his teaching career. While teaching, Additionally, Laura Sanford, president of the AT&T he fell in love with a colleague, Ellie, and they married Foundation, noted that wider availability of technology and moved to Denver. After conquering numerous is key to community development. “Technology is the major peaks, Weihenmayer decided to confront his gateway to jobs, education and information in the 21st biggest challenge yet—Mount Everest, the world’s century,” said Sanford. highest peak. Along the journey, Weihenmayer and his team faced unbearably treacherous conditions and wit- Mary Lester, executive director of ATA, explained that nessed the frozen remains of those who had failed in the services funded by the AT&T Foundation grant will similar attempts years earlier. Finally, Weihenmayer go a long way toward equalizing opportunity. “Lack of and his colleagues made it to the top of Mount Everest, information about what technology exists and how to quite literally the top of the world. use it is still the primary barrier preventing people with disabilities from accessing the technology that can dra- Video descriptions make television programs, feature matically improve their quality of life and economic films, home videos and other visual media accessible to status,” said Lester. people who are blind or have low vision, allowing them to fully engage with the story. A carefully written script The grant to CTCNet is part of the AT&T AccessAll is prepared by a trained describer, read by a professional signature philanthropic initiative, a landmark three-year narrator and mixed in a professional audio production

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suite for broadcast-quality results. A full Descriptive management of muscular pain in peoplewho have Video Service (DVS) mix consists of the main program fibromyalgia.” audio combined with these narrated descriptions. Over 10 million Americans experience long-term pain A&E and The Media Access Group have worked associated with fibromyalgia. To date, there is no med- together for years to make a variety of A&E programs ication approved by the FDA to treat the condition. accessible via closed captioning to viewers who are deaf Last year, the NFA awarded its first Seal of Approval to or hard of hearing. Touch the Top of the World presented 024 Fibromyalgia, an all-natural pain relief oil devel- the first opportunity for the two organizations to work oped by Swiss Medica, Inc. together in making an A&E film accessible via video descriptions to viewers who are blind. www.FMaware.org/guitay/index.htm www.aetv.com/touchthetop ACCESSIBLE TENT OUTDOOR ENJOYMENT FOR ALL

FIBROMYALGIA n response to an identified need for more acces- WELLBOX: THE BODY OPTIMIZER sible products for enjoying the wilderness and I outdoors, BlueSky Designs has developed the Freedom tent, an accessible tent that is attrac- he National Fibromyalgia Association (NFA) tive, easy to use, affordable and appealing to a wide recently awarded Wellbox: The Body Optimizer audience of campers. An industry first, the Freedom tent T with the NFA Seal of Approval, making the is the collaborative effort of the Eureka! manufacturing therapeutic massager only the second product to receive group and BlueSky Designs, a design firm noted for its this distinction. work in the biomedical and rehabilitation fields. The ten- t’s universal design, together with assistive technology, Wellbox initially made its debut in the health and beauty has provided people with disabilities a tent they can set markets as a treatment to reduce cellulite. But Dr. up and use themselves, or offers their caretakers conve- Chrisanne Gordon, a physician who was using the Well- niences not found in other tents. Extra room and easy-to- box for cellulite, discovered that the technique also eased manipulate features also make the tent ideal for families her fibromyalgia symptoms of muscle soreness and pain. with children and campers needing additional storage for The Ohio physical medicine and rehabilitation doctor extended trips. was so impressed that she developed a study using the technique with ten of her fibromyalgia patients. Forty The Freedom tent is the product of a research and devel- percent of the participants experienced symptom reduc- opment grant from the U.S. Department of Agriculture tion of 80 percent or greater. These findings led the for designing tent technology that meets the needs of European-based company Guitay, the makers of Well- people with disabilities while also appealing to a broader box, to fund further studies, including one by renowned audience. Outdoor recreation is a significant source of fibromyalgia researcher Dr. I. Jon Russell of the Univer- revenue for rural areas, and products that allow people sity of Texas Health Science Center at San Antonio, who with disabilities to camp expand this important market. is in the final stages of a clinical trial looking at the Well- Grant-funded focus groups indicated that redesign of box effect on the muscular pain syndrome. tent technology could significantly improve the usability of tents, and several different designs were developed, Praising the efforts of Guitay, Lynne Matallana, presi- with the Freedom tent chosen for broad-scale manufac- dent of the NFA, remarked, “It’s a rare organization ture and marketing by Eureka! that will dedicate time, effort and funding to develop clinical trials for an alternative therapy such as Well- The tent’s amenities include the following: 1) a five-pole box. Thus, after reviewing all the materials and results tapered rectangular dome with self-supporting aluminum of the studies, and ensuring that Wellbox passes our frame; 2) a design combination of pole pocket and con- strict guidelines for corporate partnerships, the NFA is tinuous rod sleeves with post and grommet assembly that pleased to award a Seal of Approval to Wellbox, which allows setup from one side of tent or from a wheelchair; has demonstrated its effectiveness in treating the 3) a patent-pending zipperless vestibule fan door that symptoms of fibromyalgia.” requires minimal dexterity and reach; 4) pull handles on the internal door and window zippers that allow easy In response, Michel Van Welden of Guitay commented, grasp and operation; 5) combination side-entry “We are very honored to receive the NFA’s Seal of doors/windows in the sleeping area that provide excel- Approval for the Wellbox. With this partnership, lent ventilation and are sized for side transfer of a person Guitay will further show its commitment to support the onto a cot; and 6) a large useable vestibule area that services of the NFA while providing a product that is allows for recreational space or extra storage. scientifically proven to be safe and beneficial in the www.blueskydesigns.us/freedomtent.htm 10 ABILITY pgs, 2,3,5,7,11,23,27,75,76 8/11/06 1:36 AM Page 11

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HUMOR THERAPY

his global warming thing doesn’t sound that bad. I would drop, and then the only problem left to deal with don’t know about you, but I get cold easily, so I would be grunge music. Twelcome the heat; that’s why I moved to California—along with being able to get a yummy And what about penguins? Doesn’t anyone care about burrito. I lived back east for a long time, and stepping penguins? Tell me they wouldn’t be happier with a little outside every winter morning was like having a frozen Bahamas-type climate. Instead of huddling together and hamburger patty pressed to your face. My SUV has eating snow cones on some arctic iceberg, they could be never had trouble turning over on a sunny day. Sure, playing beach volleyball and sipping rumrunners. And global warming may cause your butt to stick to the maybe, just maybe, if it gets warm enough, they can leather seat in your vehicle, but at least you won’t be take off those silly tuxedos. waiting around for AAA to jump-start your car. Okay, the polar caps could melt and perhaps cause tidal Global warming would make tanning a lot easier. A tan waves that would wipe out coastal cities, but come on, makes me look good, but I get anxious and bored lying in these resort towns are occupied by beach bums who the sun. So if global warming can cut down on the sun don’t have any jobs. Think about it: while you’re bust- time required to get that George Hamilton bronze, I can ing your butt at a mundane 9-to-5 office job, they’re live with that. Let’s face it: sometimes looking good waxing a surfboard and waiting for gnarly curlers and trumps ozone depletion. Plus, would it really be a bad toasty breakers. While they’re smoking dope, you’re thing to see more women walking around in bathing getting reamed by the boss for not collating this quar- suits? We could become the Sunshine Planet, like Florida ter’s financial reports. I’m telling you, there’s nothing is the Sunshine State, and start charging aliens from like a big wave of reality to get people to work hard and Uranus to vacation here. I’m sure the little monsters pay their fair share of taxes. would pay a hefty fee to get a nice tan on those bald, gray heads. Bring on the global warming, I say. A little toastiness means less money we have to shell out for extra clothing. I think global warming would put everyone in a better (And more left over for other necessities—like that mood. Sunshine always makes people happier. It brings Girls Gone Wild anthology.) We may sweat a little more back memories of school letting out for the summer. On and the stains below our underarms may grow bigger, the other hand, snow and rain piss folks off, reminding but hey, it’s not the end of the world…is it? them of the heating bills they have to pay. (Which brings up another point: maybe with a few more rays we by Jeff Charlebois can finally get this solar energy thing to work.) With a little global warming, I’ll bet the suicide rate in Seattle “Ham on a Roll”

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The ADA and Workers Who are Deaf or Hard of Hearing

eth is a business professional who last year expe- nication or hear traffic, sirens, warning alerts, etc.); 2) rienced significant hearing loss from an injury. it has substantially limited a major life activity in the BAfter a period of recovery, she is ready to re- past; or 3) an employer regards or treats the individual enter the job market and has decided to look for a sales as if the hearing loss is substantially limiting. position. What protections does federal law provide her against discrimination based on her disability? WHAT CAN AN EMPLOYER ASK BEFORE MAKING AN OFFER OF EMPLOYMENT? The employment provisions of the Americans with Dis- abilities Act (ADA), a federal law that prohibits dis- An employer may not ask questions about an applicant’s crimination against individuals with disabilities, apply medical condition or require the applicant to take a to employers with 15 or more employees. The law is medical examination before it makes a job offer. How- enforced by the U.S. Equal Employment Opportunity ever, an employer may ask all applicants generally Commission (EEOC). Additional protections are avail- whether they will need a reasonable accommodation able under Section 501 of the Rehabilitation Act—a law (e.g., a sign language interpreter, additional test-taking applying to jobs with the federal government, also time) to complete the application process. enforced by the EEOC—and under many state laws. DOES AN APPLICANT OR EMPLOYEE HAVE Hearing loss affects about 28 million Americans, 15 TO DISCLOSE HEARING LOSS? million of whom are full- or part-time workers. Because hearing loss is more prevalent as people age, and Amer- The ADA does not require applicants or employees to icans are increasingly choosing to remain in the work- disclose hearing loss to employers. Verbal or written force longer, the number of workers who are deaf or disclosure is necessary in order to request reasonable hard of hearing is projected to grow. accommodations, but it can be made at any time (before or after the hiring process). An employer may The EEOC emphasizes that people who are deaf or hard not refuse to consider a request for an accommodation of hearing can perform successfully on the job and because it believes the request should have been made should not be denied opportunities because of stereo- earlier; however, it is a good idea for an individual typical assumptions about hearing loss. Employers with a hearing disability to request any needed often assume incorrectly that workers with hearing accommodations before performance problems loss will cause safety hazards, increase employ- occur. ment costs or have difficulty communicating in fast-paced environments. In reality, people who are Additionally, an employer may ask about a deaf or hard of hearing can be effective and safe medical condition or require a medical exam- employees. ination if it has a reasonable belief, based on objective evidence, that an employee’s med- To answer common questions about accom- ical condition is the cause of performance modating with people with hearing loss in problems or may pose a direct threat to the the workplace, the EEOC provides the fol- employee or others. For example, if an lowing guidelines. employee makes an unusually large number of errors in the customer transactions she records WHEN IS HEARING LOSS CONSIDERED when talking on the phone, her employer A DISABILITY UNDER THE ADA? could lawfully ask if she has difficulty hearing customers and, if so, whether she needs an Hearing loss is a disability under the ADA if accommodation. (A possible accommodation any of the following conditions are met: 1) it would be a captioned telephone that would allow substantially limits a major life activity (for her to communicate verbally while receiving an example, ability to understand spoken commu- almost real-time text relay of the conversation.)

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On the other hand, if an employee’s performance prob- ance with the ADA or similar state and local laws; 4) as lems are unlikely to be related to hearing loss (e.g., needed for workers’ compensation purposes (for exam- repeated tardiness or poor writing skills), the employer ple, to process a claim); and 5) for certain insurance may not ask questions about hearing, but instead should purposes. handle the situation in accordance with its general poli- cies for poor performance. WHAT TYPES OF ACCOMMODATIONS ARE COMMON FOR PEOPLE WITH HEARING LOSS? CAN AN EMPLOYER RESCIND A JOB OFFER IF IT FEARS HEARING LOSS WILL AFFECT JOB Frequent accommodations include 1) a sign language PERFORMANCE? interpreter (particularly for meetings where moment-to- moment interaction is needed); 2) a TTY, text tele- The first step is for the employer to express its concerns phone, voice carry-over telephone or captioned tele- to the hiree and ask the hiree how he or she would per- phone; 3) appropriate emergency notification systems form the essential functions of the position, with or (e.g., strobe lighting on fire alarms or vibrating pagers); without a reasonable accommodation. The employer 4) written memos and notes (especially for brief, sim- may withdraw a job offer made to an individual with a ple or routine communications); 5) work area adjust- disability only if it can demonstrate that the hiree is ments (e.g., a desk away from a noisy area, adequate unable to perform the fundamental job duties or would lighting for lip-reading); 6) assistive computer soft- pose a direct threat on the job site (i.e., a significant risk ware (e.g., net meetings, voice recognition software); of harm to self or others that cannot be reduced through 7) assistive listening devices (ALDs); 8) augmentative reasonable accommodations). Any potential harm must communication devices that allow users to communi- be substantial and likely to occur. cate orally by typing words that are then translated to sign language or a simulated voice; 9) communication WHAT MEDICAL INFORMATION CAN AN access real-time translation (CART), which translates EMPLOYER REQUEST FOR A REASONABLE voice into text at real-time speeds; 10) closed caption- ACCOMMODATION? ing for videos 11) time off in the form of accrued paid leave (or unpaid leave if paid leave has been exhausted) In considering accommodation requests, employers may for disability-related tasks (e.g., training a new hearing ask for reasonable documentation showing that the con- dog); 12) alteration of non-essential job functions; and dition is a disability and that accommodation is needed, 13) reassignment to a vacant position, if requested by but they are not entitled to full medical records. An the employee and more appropriate for the his or her employer may not ask for information about conditions disability. unrelated to the one for which the accommodation is requested or require more information than is necessary Note that contracting with another entity to provide a to determine whether an accommodation is needed. service or conduct an event does not relieve an employer of the responsibility to provide a necessary WHAT ARE THE CONFIDENTIALITY RULES accommodation for that service or event. ONCE HEARING LOSS HAS BEEN DISCLOSED? DOES AN EMPLOYER HAVE TO Under the ADA, an employer must keep confidential PROVIDE THE REASONABLE any medical information an applicant or employee dis- ACCOMMODATION THAT AN closes. The information must be kept in files separate INDIVIDUAL WITH HEARING LOSS from general personnel files and must be treated as a WANTS? confidential medical record. Importantly, telling co- workers that an employee is receiving a reasonable No. The accommodation must be effective accommodation amounts to a disclosure of confiden- to remove the workplace barrier, providing tial medical information; as such, an employer the individual who is deaf or hard of hear- should answer co-workers’ questions with a simple ing an equal employment opportunity to explanation that it cannot discuss the situation of participate in the application process, any employee with co-workers. An applican- attain the same level of performance t’s or employee’s medical information may as co-workers in the same position, be disclosed only 1) to supervisors if nec- and enjoy the benefits and privileges of essary to provide reasonable accommoda- employment available to all employees. tions or explain an employee’s work Where two or more suggested accommo- restrictions; 2) to first aid or safety per- dations are effective, primary considera- sonnel if a condition might require emer- tion should be given to the individual’s gency treatment or an employee might preference, but the employer may require assistance in an emergency; 3) to choose the easier or less expensive one government officials investigating compli- to provide.

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An employer is not required to provide accommoda- CAN AN EMPLOYER REQUIRE AN EMPLOYEE tions that would result in an undue hardship (i.e., TO USE A HEARING AID OR OTHER DEVICE? extreme difficulty or expense), but in these cases the employer should consider whether some or all of the No. The ADA does not allow employers to require an accommodation’s cost can be offset. For example, state assistive hearing device, nor may an employer deny an vocational rehabilitation agencies or disability organi- individual with a hearing disability a reasonable accom- zations may be able to provide accommodations at lit- modation because the employer believes that the indi- tle or no cost to the employer. Federal and state tax vidual has failed to take some measure that would credits and deductions may also help offset the cost of improve his or her hearing. accommodations. Even if a particular accommodation would result in undue hardship, an employer should WHAT CAN PEOPLE DO IF THEIR RIGHTS not assume that no accommodation is available, as a HAVE BEEN VIOLATED? different accommodation might be possible without undue hardship. Applicants or employees within the private sector or state/local government can file a charge of discrimination ARE THERE ACTIONS AN EMPLOYER IS NOT with a local EEOC office, by mail or in person, within REQUIRED TO TAKE AS REASONABLE 180 days from the date of the alleged violation (extended ACCOMMODATIONS? to 300 days if a state or local anti-discrimination law also covers the charge). Applicants or employees making a Yes. An employer does not have to remove an essential claim against a federal agency must file a complaint job function, lower production standards or excuse viola- with that agency by contacting an EEO Counselor at the tions of conduct rules that are job-related and consistent agency within 45 days of the alleged discriminatory with business necessity, even where an employee claims action. that the disability caused the misconduct. Additionally, employers are not required to provide employees with For information and case examples regarding the personal use items, such as hearing aids or similar ADA and hearing loss or EEOC claims, visit devices that are needed both on and off the job. www.eeoc.gov/facts/deafness.html

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ith a mission to organize the world’s informa- Recently, Google has developed an additional tool tion and make it universally accessible and assisting users who are blind or have low vision. Wuseful, former Stanford computer science stu- Google’s Accessible Search, developed by research sci- dents Larry Page and Sergey Brin are the proud entist T.V. Raman, PhD, allows users to prioritize search founders of Google, the world’s largest Internet search results in order of sites that can be easily navigated engine. A play on the word googol, the mathematical using standard screen readers. Raman, who is blind, term for 1 followed by 100 zeroes, Google’s name explains his interest in refining Google Search technolo- reflects the immensity of the task of wading through a gy for users with low vision: “When I search the Web, I seemingly infinite amount of Web data. want to find relevant information with a minimal amount of distraction. But because I can’t see and I use Initiated as a graduate school collaboration called Back- a device that converts Web text to speech, I’m even Rub (because of its unique process for analyzing back more in tune with the distractions that can sometimes links to websites), Google got its big break in the year get in the way of finding the right results. If the infor- 2000 when the company partnered with the Internet ser- mation I’m after is on a visually busy page, I have to vice provider Yahoo!, solidifying its standing as a sort through that page to find the text I want—an extra provider of great technology that by year’s end would step that can sometimes be very time-consuming.” answer 100 million user queries each day. Similarly, in 2002 AOL chose the company to provide search and Accessible Search looks at the HTML code behind the advertising to its 34 million members and tens of mil- webpages and “tends to favor pages that degrade grace- lions of other visitors. fully—that is, pages with few visual distractions, and pages that are likely to render well with images turned In the years since, Google has expanded and refined its off,” Raman explains. This refinement holds consider- services, from Web searches to advertising to email, able promise to improve the Internet search process for digital maps and blogging. The company has continued the estimated 45 million people worldwide who are to look for ways to include ever-growing populations of blind and additional 135 million who have low vision. computer users, including people with disabilities. For example, in 2005 it launched Google Video, a project So far, the response Raman has received from users who that captures the closed-caption information on TV pro- are blind is extremely positive, although many already gramming and makes it searchable. Consumers can par- find Google’s main search engine fairly easy to use. He ticipate with Google researchers in trying out new inno- comments, “I’ve been using Google since 2000 as my vations by visiting Google Labs, Google’s test bed for primary search engine. I’ve noticed since 2001 or 2002 new products. 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.”

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, T.V. Raman and (Ra)man’s best friend. (ABILITY Magazine took a little artistic license in this search page) 16 ABILITY 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 like Accessible Search to be part of Google.com, and who are blind, primarily because I’m one of them,” that’s where we’re headed. Currently on Google.com, Raman says. “Given what I needed myself, and what I you have certain options you can choose as qualifiers knew best, I did it from my perspective. But the idea for your search. For example, you can choose safe isn’t to limit it to users who are blind.” As it turns out, search, which eliminates all pornographic sites from many of the sites prioritized by Accessible Search will your search results. I envision that someday we’ll have a also be more easily navigable by users with other dis- similar choice for accessible searches directly on the abilities, like mobility difficulties. In the long run, main Google.com webpage. Right now we’re putting it Raman hopes other accessible search programs will be out there for the users to discover and try out, which is developed specifically for other user groups: “The why it’s part of Google Labs. If the number of users objective is to develop technologies that drive the future reaches a critical mass and people find it useful, then it of the Web toward ubiquitous information access.” will move out of the lab and we’ll take the next step.”

Accessible Search can be accessed currently on the by Dahvi Fischer Google Labs site, but the goal is to incorporate it eventually as an option on the main Google search page. To try Accessible Search, visit Says one of Raman’s associates, “Long-term, we would www.labs.google.com/accessible

Wanting to see how this new search worked, ABILITY Magazine tried a non- scientific 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 Ratzen- berger 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.

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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 Ibringing looks that kill to uncharted brazenness. The show airing was Showtime’s Weeds, featuring Shoshannah Stern as Megan, a deaf high schooler and a certifiable cutie. Picked up for a second season, Weeds chronicles the struggles of recently widowed mother Nancy Botwin (Mary-Louise Parker) and her adolescent sons Silas and Shane (Hunter Parrish and Alexander Gould). Thrown into emotional and financial turbulence, Nancy starts dealing marijuana to make ends meet and soon finds herself in a social network quite different from her former life, with repercussions for the entire family.

The twist here is that Weeds is no inner-city tale. Opening credits show the fictitious city of Agrestic, a suburbia generica populated by conformists—morning commuters pulling out identical black SUVs from their driveways onto a winding street of McMansions, white oxfords-and-black-tie types sipping lattes, and trophy housewives jog- ging with iPods latched to their waistbands. In short, Agrestic is one of those planned townships that suffocate.

Megan, as played by Stern, is the girlfriend of Silas, the elder son, who at the same time contends with the loss of his father and the small-but-magnified hazards of high school and puberty. In episode three, he meets Megan, who paints him for an idiot in more ways than one. Over the remainder of the season they come to better terms and fumble with a relationship, battling hormones, communication issues and the permeation of marijuana. As Megan, Stern delivers her lines in several ways: through expression, via pager or instant messaging, in sign language and with her voice.

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Along with Stern, Parker, Parrish and Gould, the supe- Glenn Lockhart: You took the Hollywood plunge by rior cast includes Elizabeth Perkins as Celia Hodes, leaving college weeks away from graduation. How did Nancy’s friend/nemesis, and Kevin Nealon as Doug you decide to take that risk? Wilson, Nancy’s perpetually stoned accountant and business advisor. Shoshannah Stern: I left halfway through the spring semester of my senior year, approximately five years ago. I was hooked. I ate up the show, watching it until the Over winter break, I got an opportunity from Warner season closed and waiting in eager anticipation for the Brothers to audition for a guest-starring role on one of next chapter. their sitcoms. I’d knocked on doors when I’d gone to theater school in Los Angeles the summer of my junior Like Megan, Stern herself is a compelling character, and year, trying to find an agent and submitting headshots, she is no stranger to acting. She got her break with a but nobody would see me and I knew it was virtually guest role on the cable show Off Centre and subsequent- impossible to get an audition if you didn’t have an ly appeared as a regular on the short-lived network TV agent. So when the Warner Brothers opportunity came show Threat Matrix. Additionally, she joined Matthew up, I wanted to just go and get the experience of a pro- Broderick for a cameo in the feature film The Last Shot fessional audition under my belt. I never thought I’d and has garnered guest roles on Providence, Boston even get called back, much less book the role. Public, ER and The Division, in which she was excited to act opposite Marlee Matlin, the only deaf actress to After the role filmed, I thought that was it—a one shot have won an Oscar. This fall Stern will also appear on thing. So I went back to college. But then an agent the CBS pilot Jericho, making her the only deaf actor in heard about my work on the show and flew me back to American TV history to simultaneously carry regular book me. Then a couple weeks later I had another audi- roles on two prime-time shows. tion lined up, so I flew back for that. At that point I just commited myself to going full-steam into acting. So I A long way to Hollywood for a girl from…well, okay, moved to Los Angeles in time to shoot my second tele- only 357 miles away. But her route was as roundabout as vision show. travel can go: Stern grew up in Fremont, California, where she attended the California School for the Deaf GL: You eventually got your degree, but weren’t you and was a mainstay in the school theater, then defected to busy with one or two pilots in the duration? the East Coast (Washington DC) to attend Gallaudet Uni- versity, the world’s only four-year liberal arts university SS: I finished my degree a year ago, in English with a for the deaf, where she was critically celebrated on stage. focus on writing and literature. I finished by correspon- dence thanks to a special agreement with Gallaudet Uni- As it turned out, that stage was her launchpad. Straight versity, for which I’ll never stop being grateful. I had from the Gallaudet University campus, she ascended to some down time because my show, Threat Matrix, had the screen. just ended and pilot season was slow for me that year. So I decided to use the time to my advantage. The tim- Recently, Ms. Stern sat down with me in Los Angeles to ing was really perfect, because I think not even a month recount for ABILITY Magazine her meteoric path from after I finished, the audition came for Weeds. suburban Fremont to Hollywood.

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GL: How did it go when you read for the character?

SS: From the moment I got the materials, I just thought to myself, “Oh my God, oh my God, I just HAVE to do this.” I showed my brother, who was staying with me at the time, and he was like, “Are you kidding? This role is yours.” But I’m really superstitious, so I thought he’d upset the cosmos by saying that, and I got really angry with him for potentially jinxing me.

I loved the audition because much of the time in the scene I got to fill out the character without even saying anything. Most of the time I get auditions for deaf characters where the scene has them communicating in really convoluted ways, like reading lips from across the room when the other person’s back is turned or having other people parrot what they say. I loved that I got to portray Megan without saying anything. It brought so much more depth to her character, because the scene was focused on who she was and not how she communicated.

I got called back on the spot, which is always such a great feeling. Then my agent told me I was the only one they called back.

GL: How do you like Megan? She’s a firecracker, and a huge dimension of her character is nonverbal.

SS: I love Megan. She has so much spunk and personality, and she doesn’t take anything lying down. She has so much confidence and really knows who she is, even though she’s so young. I love that she’s smart and unafraid to make fun of herself.

GL: Does anything in the character remind you of yourself at that age?

SS: I grew up in the suburbs of Fremont, in the San Francisco Bay Area, which is kind of reminiscent of Agrestic. I was there when I was in high school, and Megan is in high school now, so I can totally relate to how she feels growing up in a place like that, safe and reasonably well-to-do, but where there’s nothing around except a Starbucks on every corner. It can sometimes feel claustrophobic— you just want to go crazy and bounce off the walls.

GL: (laughs) That’s probably why you live in a big city now. It’s about stimulation for some people. What was it like to work on the first season of the show?

SS: It was amazing. I went to the table read, and there were all these great actors— I couldn’t believe I was sitting there with them. I felt like I was Shoshannah Squarepants, just soaking up everything I could from them like a huge human sponge. And it’s not just the actors—don’t even get me started on the writers.

GL: Okay, so you love the writers, but they probably don’t have the intimate understanding of living deaf that you do. How much input do you have about Megan’s character—what happens to her, how it happens, how she communicates, etc.?

SS: I’m an actor, not a writer. I’d be pretty annoyed if the writers tried to come in and hang over my shoulder telling me how to act, so I don’t go in and tell them how to write. I feel I should defer to the writers and the directors because they’re the ones who have the complete vision. They see things through from the beginning to the end. I’m responsible for one small part, so my scope is much more limited than theirs.

With that said, the writers and directors really make themselves available to me. If I ever have questions or suggestions, they’re always open to discussing them. I think Megan communicates in the most organic way I’ve seen. In the beginning, when she had just met Silas, she talked with him a lot via pagers and two-way

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messaging because she wasn’t comfortable enough with wanted to be an actress since the day I was born. I even him yet to speak. As you see their relationship becom- asked my parents for an agent for my seventh birthday! ing closer and more serious, she gains confidence, so I have no idea how I knew what an agent was, but I she speaks more and more. I think that adds so much guess I’d figured out that I needed one. Of course they depth to their connection. said no, so I had one of my well-practiced tantrums. That scene repeated itself in some way basically every If Megan communicated the same way I do, since I year, but they just wanted me to have a normal life and basically sign almost all the time in my personal life, I have the time to make a good decision on my own. They wouldn’t be acting. I’d just be playing myself, which really did the right thing for me. would be much less interesting. I have a feeling that if I’d started when I was younger, it GL: What have you heard from deaf people who have would probably have been too overwhelming for me. seen you on the show? Plus, my parents were afraid about the ups and downs of the business. But when I made up my mind about mov- SS: Most of them just want to see more of Megan. They ing to Los Angeles they were nothing but supportive. love that a show of that caliber has a deaf character, and My older sister has been working in the art world in they just want to know more about her and what makes London for the past five years, writing about art and her tick. They’re curious about how she feels about now creating art of her own, so there’s a lot of similarity apparently being the only deaf person in Agrestic. A lot and support there. of my friends have ordered Showtime just because of the show. In general, though, I think the show has kind GL: Your deafness is hereditary, going back several of flown under the radar with the deaf community. generations, but hearing loss comes in many shades, doesn’t it? You’ve leapt from an environment sur- GL: Has you had people recognize you when you’re out rounded by sign language to the mainstream of Los in public? Angeles, where networking and first impressions are survival tools for any actor. Have you had to make SS: That happens at least once a week, believe it or not. any adjustments? I think it’s kind of hard to miss me because I’m always signing. People say they love the show and ask if SS: Well, this is kind of a funny story. I am fourth- Megan’s coming back. I had one woman act out the generation deaf, which means everyone in my immedi- spray-painting scene I did in the first episode I was in, ate family is deaf. So I grew up always having 100 and that was a keeper. They really like how Megan percent accessibility to language and communication, doesn’t take any crap—that’s the response I get the which was wonderful and something so many deaf most. I’ve also had people ask me if I am deaf in real people don’t have. On the flip side, even though I had life! That makes me laugh, but I think I’d probably ask some hearing, I wore hearing aids only when watching the same question if I didn’t know anything about deaf movies, because hearing was really more of a distrac- people myself. tion than a benefit for me. I had no reason to hear since everyone in my world was deaf and I went to a univer- GL: What response have you gotten from your family sity for the deaf. about the career path you’ve chosen? When I moved to Los Angeles, I decided I should proba- SS: They’ve been unbelievably supportive. I think I’ve bly start talking to people. I’d had some speech training

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GL: Deafness must add another layer to the immigra- tion 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 German- speaking 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 bed- room as well, and sometimes before I go to auditions I still do the same thing.

GL: Despite your busy schedule, I understand you’ve when I was a kid but I hadn’t really kept up with it. So I managed to remain involved in the deaf community and kind of re-trained myself by watching movies and read- often give time to causes you feel are important. ing the captions. I could match the words to the sound I picked up, and then rewind to hear again how the word SS: Yes, I just hosted a brunch at the House of Blues for was spoken. Now I always have an interpreter on set GLAD (the Greater Los Angeles Association for the with me, but I’m basically okay with one-on-one con- Deaf), and I’m involved with Glimmer of Hope, a charity versations without an interpreter. I’m grateful for that that helps deaf women who have been victims of domes- because situations come up where, unfortunately, an tic and sexual abuse. interpreter can’t always be present. I’ve also done two benefit performances of the Vagina GL: Just as your deafness is an inheritance, so is your Monologues and hosted another fundraiser for them. It’s Jewish heritage. Your last name, Stern is Hebrew for a very important production—it’s so crucial for women to star, which I hope will prove prophetic. What about the know that even though they live in a small community, rest of your name—any story of intrigue there? there should not be any stigma attached to anyone who’s been abused. SS: Shoshannah means rose in Hebrew. My younger brother and older sister also have Hebrew names. We Additionally, I work when I can with Los Angeles’ Deaf always had two birth certificates, one Hebrew and one West Theatre. I tell stories in American Sign Language American. I decided to adopt my Hebrew name when I on Saturday mornings for their Storytime program. Lit- was eleven. I just felt a deeper connection to it. My par- eracy among deaf children is so important, and it’s ents were completely supportive—in fact, they wished another passion of mine. they had gone with the Hebrew name from the get-go. They’re both children of Holocaust survivors, and I GL: Have you met any of your Hollywood heroes yet— think there might have been a subconscious need to the performers who ignited your passion for acting? assimilate by giving their children non-Hebrew names. SS: Yes, I’ve been very lucky. I remember one time My middle name is Oppenheimer, which is the maiden there was a huge movie coming out that had a deaf char- name of my paternal grandmother. She was born in acter, a really plum role. They were searching all over Berlin and lived through the Holocaust, and the deaf- America for a deaf actor for it, but they decided to give ness in my family extends past her, to her husband’s the part to a hearing actor instead—I was really upset mother, my great-grandmother. about that but felt my hands were tied.

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In any case, Leonardo DiCaprio was attached to the movie at first, although he later dropped out. But I happened to see him out, and I can sometimes be really spontaneous and act without thinking, so I stepped up to him and said, “Can I ask you a question?”…And then I realized who I was talking to! Staring into his face, I totally lost my nerve and apolo- gized for interrupting him. But he was unbelievably decent and said, “No, no, what did you want to ask me?” So we talked about the movie and how disappointing it was for the deaf community that the role wasn’t given to a deaf actor. He was very attentive and supportive and really listened to me. He was intuitive about how he needed to communicate with me and gave me really good advice. It was one of the most inspiring things ever to happen to me.

GL: What about Marlee Matlin? There were other deaf actors before her, but she has probably been the best known deaf face since her Oscar in 1986— when you undoubtedly were an impressionable four- or five-year-old.

SS: I had the opportunity to work with Marlee on a television show, and I was unbelievably star-struck when I saw her. She’s so highly decorated and she never stops working. She makes work happen for her, and she takes only the parts she wants to do. That gives me so much hope.

I really think she is responsible for bringing the world’s attention to the possibilities of using deaf characters in film and television. Many of her roles, like her recent movie What the Bleep Do We Know?, weren’t even written with a deaf character in mind—but look what she brought to the movie! It’s just beautiful when people choose to look at things a little bit differently. That’s when magic happens.

GL: Marlee has been leveraging her celebrity in getting legislation passed for captioning on TV, movies and other video materials. How important is captioning for you?

SS: It’s totally important—I can’t watch anything if it’s not captioned. I don’t even like going to movie theaters if the movies aren’t captioned. It’s like watching a television program or a movie with the sound off—what’s the point, really?

Individual captioning devices, called Rear Window, are now available in some theaters for specific movies, but they require you to keep looking up and down to catch both the captions and the image. It’s not as natural as having the captions on the screen. By the end of the movie, my eyes are worn out. It’s just easier for me to wait for the DVD to come out and then watch the movie at home.

Of course, I’d love for everything to be as accessible as possible. For example, I’d love for all theaters to have all their movies available for Rear Window. I think things are getting a lot better, though. There are a lot more places where real-time captioning and sign language interpreters are available. Many more television programs are captioned now as well. We just can’t rest on our laurels; we always have to try to make things better. I talk about it with people in the industry—that’s the best thing you can do. Most people are used to seeing things one way. You just have to tell things in your voice and be who you are—that’s how you educate people. You can’t sit them down and give them a lecture. Instead, have a conversation, and then people learn without being forced.

GL: How do you work it when you audition? Do you bring your own interpreter or do you just work through the communication issues on your own?

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After a while you just have to go with what you feel is right for you. I’m always learning from actors I see in movies and on stage and from those I work with. At the risk of sounding like a total cliché, I learn from everything I see in life. I think that when you go to workshops, you get one person’s idea of what you should do. That’s great, but it’s not absolute. The best way to learn is to actually do something and then learn from the entire process.

GL: How do you communicate with your agent, and with the director and crew?

SS: I’m at an agency where I’m the only deaf client, but they just get it. They know what they need to do to communicate with me. They know to look directly at me when they’re talking to me and to enunciate a little bit more clearly and slowly than they normally would. We also communicate through e-mail. They know I don’t have a phone, so they send every e-mail to my pager as well, and they text me if it’s an emergency.

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, SS: I don’t audition with interpreters. Sometimes they and of course everyone loves him. already have interpreters present if the role is for a deaf person, and that’s great. But otherwise I choose not to GL: Describe for me your dream role. bring an interpreter, because auditioning is a very special situation. To audition means you’re supposed to SS: I would really love to have my grandmother’s story come in and read with the casting director—that’s where told. She was the only deaf member of her affluent fam- your energy is supposed to go. If the interpreter is in the ily in pre-war Vienna, but she was the only one who sur- room, your attention is usually diverted from the casting vived the Holocaust, and she was alone for some time. director, so your energy is diverted as well. The casting Would you understand the Holocaust as a child if it was director has the script, so they know what you’re saying, happening around you with nobody to explain it? If the and you know what they’re saying as well. I think act- sound was on mute? ing is all about connecting with your character and with the other characters. In most cases, there wouldn’t be an GL: Thanks so much. You’ve been incredible. interpreter in the scene when it’s actually being performed, so I like to keep it as real as possible for the SS: Absolutely. My pleasure. audition. by Glenn Lockhart GL: How do you train? Do you participate in workshops? Official Website of Shoshannah Stern SS: I used to go to workshops, but it was the hardest www.shoshannah-stern.com thing in the world because theater institutes are privately owned, so they’re not required to provide interpreters. Weeds (Showtime) www.sho.com/site/weeds If I wanted an interpreter, I had to pay for one myself. Jericho (CBS) But the reason I was going to workshops was that I www.cbs.com/primetime/upfront_2006/jericho.shtml needed to book roles because I needed money! Of course, I didn’t have enough money to afford the Deaf West Theatre www.deafwest.org interpreter’s fee plus my own. Most of the time, if I got the interpreter’s fee waived it was because the Glenn Lockhart describes himself as deaf as can be. He works at Verizon in business development for the relay ser- interpreters who went were actors themselves. So they vice unit and is a graduate student at the Walter Cronkite were trying to learn and interpret at the same time— School of Journalism and Mass Communication at Arizona which I completely understood—but I wasn’t getting State University. He jokes that he doesn’t like writing much, 100 percent of the message. but there’s no way to get sign language down on paper.

26 ABILITY 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 hand- A propelled 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 Ser- vice 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 percep- tions that others have.”

To those who know Kubacz, his endeavors come as no surprise. When he was growing up in South Caroli- na, BMX riding and the wilderness were his pas- sions. Mountain biking was not the most popular sport in the area, but he so loved

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being in the wilderness that he eventually began riding Uhuru (pronounced a-who-roo) in Swahili, thus giving in it. After his injury in the service, paralysis prevented the expedition its name. If the team is successful, him from mountain biking for 12 years, so he picked up Kubacz with be the first person with paraplegia to sum- skiing and ski jumping instead. Ultimately, Kubacz dis- mit the great peak completely unassisted. “No one will covered the One-Off, an all-terrain hand cycle, and he push me, no one will pull me and no one will carry me,” was soon freely riding again in the mountains he had he emphasizes. always loved. The Uhuru Ascent represents an important and lofty More recently, he has also become hell-bent on helping goal in the lives of the veterans, who see themselves as others with disabilities find opportunities and adventure, redefining the perception of what it means to have a dis- founding the nonprofit organization Freedom For Life, ability. The climb is no gimme—the success rate for which aims to create opportunities such as service pro- able-bodied climbers is often low, and the conditions jects, experiential learning and wilderness expeditions and technical aspects of the climb result in unpre- for people recovering from physical or emotional trau- dictable situations that can impede any climber’s ma. Kubacz believes that being outdoors and staying progress. Other climbers using wheelchairs have active are necessary elements for everyone to experi- attempted the climb and reached the summit, but all ence to gain the confidence, trust and self-esteem to be have required assistance. The community of climbers healthy contributors in life. and veterans with disabilities has been waiting to see who will be the first to accomplish the rare feat of Always aiming for the adrenaline rush, Kubacz pushes climbing to the summit unaided. what might be considered the typical limits for someone in his physical situation. As if to prove that point to the “Typically, disabled veterans are viewed with pity or most extreme, his first major mission for his newly sadness from well-intentioned and compassionate peo- formed organization is to spearhead the Uhuru Ascent, a ple,” Kubacz says. “Freedom For Life is now allowing unique expedition featuring veterans with disabilities veterans with disabilities to be a strong symbol of free- summiting Mount Kilimanjaro, one of the world’s high- dom, showing empowerment and choice in improving est mountains at 19,341 feet. The vets will be accompa- their lives.” nied by about 20 able-bodied climbers and support staff. The highest point on Kili is named Freedom Peak, or Because he is paralyzed from the chest down, Kubacz

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Darol Kubacz bikes all terrains with his One-Off hand cycle

will climb the mountain using a One-Off for 16,000 One of Kubacz’s most vocal feet. Afterwards, he will transition supporters is Uhuru Ascent expedition into a customized adaptive, multi-wheeled ascending leader Kevin Cherilla, a native of Pittsburgh device called a slider, which incorporates conventional who now resides in Phoenix and has led several rock climbing gear, ropes, winches and anchoring successful expeditions up Mt. Kilimanjaro over the devices. This unique apparatus is designed to allow him past three years. An experienced mountaineer for nearly to reach the unprecedented final 3,000 feet. At no point two decades, his adventures have taken him to six conti- during the ascent will he be carried or pushed. nents and more than 20 countries.

As a signature expedition, the Uhuru Ascent is poised to “Darol is truly a special individual who continues to help Freedom For Life gain awareness and raise needed amaze everyone who comes in contact with him,” Cher- funds to purchase equipment, such as One-Offs, that illa says. “While I have climbed Mt. Kilimanjaro several will allow many other individuals with disabilities to times, it will be very special for me to be with Darol enjoy significant outdoor and recreational activities like when he attains his goal and reaches the peak with no mountain biking, adaptive cycling, rafting, skiing, assistance. Watching him train and seeing how far he SCUBA diving, wilderness trail hiking and rock- has come since committing to the Uhuru Ascent has climbing. In addition to organizing the Uhuru Ascent, been a rewarding experience.” Freedom For Life sponsors and organizes education programs and provides peer mentoring at local rehabili- Since 1993, Cherilla has also traveled the globe with tation centers. For climbers who are not yet ready to con- world-class adventurer Erik Weihenmayer, who in 2001 quer Mount Kilimanjaro (viewed as the Mount Everest became the first blind person to summit Mt. Everest. for climbers with disabilities because it presents more Cherilla served as base camp manager for the 2001 feasible access), Freedom For Life also takes partici- expedition team, which broke five world records. pants on half-day and full-day outdoor treks. The monumental Uhuru Ascent expedition will be Energized by the upcoming expedition, Kubacz has chronicled in the climbers’ own words via blogs and become a regular missionary for Freedom for Life, journals. A documentary film crew will accompany recruiting new wilderness-trekkers wherever he goes. them to produce an all-access portrait of the climb so One day while waiting at the airport, he struck up a con- that their story can be shared for years to come. versation with a porter working there, Liberian native John Bell, who also has quadriplegia. The friendship For more information about the Uhuru Ascent and the stuck, and Bell too has now become a hiker. Freedom For Life organization, visit www.uhuruascent.com

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he all-terrain hand cycle that Kubacz will use to imizing dead spots. On smooth, level pavement, the climb Mt. Kilimanjaro was created by One-Off road racers are slightly faster, but as soon as the road TTitanium Inc. This cycle bridges the gap starts uphill, the One-Off’s opposed orientation between today’s road-only hand cycles and the chair becomes superior. The steeper the hill, the more impor- lift-dependent downhill racers. With bicycle cranks for tant it is to have the continuous power a One-Off bike propulsion and a steering similar to the downhill racers, delivers. this vehicle can climb mountains and descend with both speed and safety. This arm-powered vehicle is analo- The prone rider position allows the weight of the rider’s gous to the modern mountain bike. upper body to be put to use in adding power to the cranks. Recumbent bicycles are known for their poor The One-Off is designed from the ground up to use the climbing performance because the rider’s weight cannot be utilized, and power is driven exclusively by the leg opposed crank position. Over rough terrain, this position muscles for power. The One-Off rider can straighten an allows riders to hold their weight up off the steering elbow and lean forward onto the cranks, just like an wheel with the two crank handles in the horizontal posi- able-bodied cyclist getting out of the saddle. tion, letting the arm muscles work in opposition for the maximum possible 360-degree power delivery and min- www.titaniumarts.com

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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 Pconcert 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 pop- ulating 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 break- away tuxedos, the guest conductors pull out all the stops, the contest builds, the audience delights and the young musicians appear to bloom. And thus another season begins for this widely acclaimed group.

Composed of more than 100 members from ages 12 to 25, today’s orchestra hails from a variety of social, economic and ethnic backgrounds, some traveling over 100 miles for each practice and performance. The prototype of a community volunteer, Katz personally funds the orchestra, providing the music, often the instruments and even concert dress for JPO members who need them—without government subsidies, without soliciting contributions and without charging his young musicians audition or membership fees. Over the years more than 10,000 of his young people have performed for hundreds of thousands of audience members. Interspersed among the regular schedule of performances have been numerous benefit concerts for charitable organizations, with 100 percent of the proceeds going to the host organization.

Through the years, many who have lauded Katz’s gifts to the community have pointed out that in a world of drug abuse, gangs and other negative pressures, he facilitates a preoccupation with something positive. At the same time, he

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is fostering another profound benefit—helping develop effects of family background, socio-economic status, the minds and thinking skills of his young musicians far intellectual readiness, preferences, etc. made no differ- beyond their music training. ence to the outcome. On follow-up testing, those who had received the music training scored highest in acade- Since the mid-1970s, research on the effects of music mic achievement and IQ, an effect noted across all IQ training on the brain, particularly in children, has bur- sub-tests and index scores. geoned. A multitude of studies from diverse institutions report the same news—that music training, especially in Similarly, Dr. K. Yoshimura of the University of Texas the younger years, generates neural growth and greater investigated the correlation between music and arts train- cognition, especially in areas of visual-spatial, verbal ing and test scores on the ACT, SAT and other standard- and mathematical performance, a long-lasting effect ized tests. Across all socio-economic groups, students many researchers call long-term enhancement. immersed in arts education scored higher than their peers. Furthermore, the longer the training, the greater Dr. E. Glenn Schellenberg of the University of Toronto at the increase in test scores. Thus, despite other elements Mississauga explains that music training involves experi- of their background, students with arts education have an ences that positively affect cognition, requiring kids to advantage. pay attention for longer periods, to read notations, to memorize passages and to master fine motor skills. On the other hand, Yoshimura’s study and others have shown that socioeconomic status greatly affects whether On a biological level, Dr. Gottfried Schlaug of Harvard’s children have access to music training, within their Medical School, in concert with colleagues both in schools or outside of them, a finding that highlights the America and at Heinrich-Heine University in Germany, importance of opportunities like the JPO, which facili- found structural and functional differences in brains of tates training for students of all backgrounds. adult musicians when compared to brains of non- musicians, such as an increased size of the corpus callo- As tightening budgets over the past decades have forced sum, a brain structure that facilitates communication many schools to cut their music and arts programs, between the two brain hemispheres. The differences researchers have appealed to the government to help were especially profound in subjects who had received stem the loss for children of venues for music training. music training before the age of seven. In a 1997 presentation before the House Subcommittee on Labor, Health and Human Services, Education and Early criticisms of research examining the academic Related Agencies, Dr Frances Rauscher of the University impact of music training raised the chicken-or-the-egg of Wisconsin discussed her research in collaboration question: Do children with music training score higher on with Gordon Shaw of the University of California at verbal tests, for instance, because those with better verbal Irvine. Speaking specifically of the at-risk child, she skills already are more likely to take music lessons? Or noted, “Researchers have found that the failure to devel- does the music training itself make the difference? op abstract reasoning represents the most glaring deficit of deprived children—and abstract reasoning is the very Taking these criticisms into account, the most recent stud- skill that is positively affected by music training.” ies have been structured differently, yet appear to show the same results—early music training, in particular, is Thus, we can see in broader terms the scope of Katz’s linked to cognitive development, with an effect greater gift. He provides an important venue for young people of than other types of stimulating activities. For example, all backgrounds. His students garner not only the joys of Schellenberg assigned 132 six-year-olds randomly to music for its own sake, but also the likelihood of groups receiving music training, drama training or no enhanced cognitive ability and a boost to future success artistic lessons at all. With this random assignment, the in whatever fields they choose to enter. Whether Dr. Ernst Clockwise from L: Dr. Katz; with Jack Dempsey, Annette Funicello, George Segal, Mia Farrow, Shirley Jones and Mary Pickford

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Katz ever had any notion of the latter makes no differ- CC: Did you ever go to Russia to visit, to see where your ence—many thousands are better off because of him. 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 Com- In 2002, Chet Cooper, editor-in-chief of ABILITY munist state. And then it evolved, but I never did go. I Magazine, first met Dr. Ernst Katz at a private White played host to a lot of musicians in my orchestra, though, House ceremony. Both men were among a select group from the Moscow Conservatory. of Americans awarded by President George W. Bush with the President’s Community Volunteer Award, the CC: How did you get started as a musician? Did your nation’s highest award for individuals who have devoted parents have a piano in the home? extraordinary time, energy and resources giving back to their communities. Katz received the award for his work EK: Yes they did. That you have to have—you may not with the Jr. Philharmonic, Cooper for his creation of the have a violin or some other instrument, but a piano you ABILITY House program. have to have!

Through the years, Cooper has become a loyal patron of CC: (laughs) I see. How old were you when you started the JPO and was especially pleased to talk to Dr. Katz to play? about the 70th anniversary of the orchestra. EK: I began when I was 14 years old, which was very Chet Cooper: Good morning, Dr. Katz. How are you? late in life, so to speak.

Dr. Ernst Katz: Well, for an old man I’m good. (laughs) CC: How did you take to it? I’m doing my best. 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. CC: (laughs) So it went well? Where was your family from? EK: (laughs) Yes, I really was a phenomenal pianist, if I EK: They came from Russia…They’re an import. must say so myself. I’ll pat myself on the back. (laughs) CC: And from there with your career, how did people CC: What did your parents do? find out that you were so talented?

EK: Well, my father was a hat man, and he founded the EK: Newspapers and magazines published it right away. Golden Gate Hat Company, the building where our I was quite a story at 14 years of age. And also I was a offices are today. My mother was what you would call a very cute kid—everybody loved me. housewife. CC: (laughs) So you had an early rise to stardom with CC: Was there music in your family? your music. At what point did you say to yourself, “I want to share this with others….with the youth?” EK: Yes, there was. My great-uncle was a conductor in Russia and a very fine musician. The Russians held him EK: Oh, right away. Because there was nothing at that in very high esteem. time for young people. So I started on the East side of Los Angeles, which was the poorest of the poor, and I Clockwise from L: Billy Barty, Mae West, Frankie Avalon, Johnny Mathis, Henry Fonda, Barbara Stanwyck and Jack Benny

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built the orchestra up from there. It became known so same thing I did. I can’t force them to do it, but I can talk quickly around the world—it was like electricity. There about it. You have to have enthusiasm, to be thrilled to was nothing like it around. be alive and thrilled to do anything that will make this world better. And it is better because of the music. With- CC: You started it out of your home? out music, there is no world.

EK: Yes I did. And that house is still standing on South CC: Do you think your longevity and very active mind Woods Avenue, a block from Atlantic Boulevard—it was are evidence that music really helps the brain? Atlantic Boulevard when I first lived there. But anyway, it’s been a happy journey. 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 CC: A happy journey for you and for thousands of kids. magnificent feeling to stand up on that podium, pick up a baton and put a downbeat out there. You’re followed like EK: Yes. Every major orchestra around the world has God—everybody should have that feeling. roots in our orchestra. For instance, the conductor of the National Symphony in Washington DC is one of our kids. CC: Is that the thought behind the Celebrity Battle of Batons? CC: (laughs) How old do you think that kid is now? EK: Yes, because everybody wants to become a conduc- EK: (laughs) I guess he must be…well, I don’t keep tor. Whether it’s popular music or classical, they all want count. one thing—to hold the baton to conduct. Hundreds of people have vied for that Golden Baton, and thousands CC: You must have thousand of stories…any humorous more have enjoyed seeing them do it. incidents that come to mind? CC: During the years of the Battle of Batons, have many EK: The whole thing is humor—because if you don’t people been injured? have a sense of humor about this sort of thing, you’re likely to drop it immediately! But I’ve got tough skin, so EK: (laughs) No, nobody was injured. I’m able to hold my own, so to speak. The stream of pro- ducing young talent is tremendous, just tremendous. I’ve CC: Has any contestant stood out by doing something brought young people from all over Southern California you didn’t expect? together to make music that sounds terrific. I’ve touched not only the people who were actually in the orchestra, EK: Oh, many. Jack Benny actually came up, took the but also their offspring—their children and their chil- concertmaster Gary Greene’s violin, and impromptu dren’s children. It’s a wonderful ripple effect. People played the violin as he conducted. come back after 50 years, and I look at them, and they are the same people I knew when they were originally in CC: Well that’s funny, because he played the violin in his the orchestra. Now, that’s a nice feeling. comedy act, didn’t he?

CC: Over the years, have you been able to show others EK: Yes, he did. He played it and he joked about it. He how music helps young people with learning, and helps was really serious about the violin, but no one took him them in school? seriously because he was a comedian.

EK: Oh, yes. I’ve been invited to talk to assemblies and CC: How have you met the celebrities who have partici- to orchestras to try to influence other people to do the pated in your concerts?

Clockwise from L: Ed Asner, Norm Crosby, Richard Pryor, Jackie Cooper, Dick Van Patten, Joe E. Brown and Buddy Ebsen

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EK: I just picked up the telephone and called them up. CC: Do you have a day job, besides working with the When they understand what the Jr. Philharmonic is all orchestra? about, they take a special interest in it. GG: Well, by profession I’m an attorney. The interesting CC: Yes, we have some great spirited people who want thing about the orchestra is that it’s an all-volunteer to give back. effort. It’s non-commercial, it’s not subsidized by the government and we don’t solicit. Dr. Katz’s theory has EK: Well that’s what America is all about, you know. been that by volunteering his support he encourages oth- When our ancestors came here, there was nothing here. ers to volunteer. Dr. Katz writes the checks for the And look at what a magnificent country we have. expenses, as they are—basically, he has invested in the orchestra over the years, for instance with a music ACROSS THE GENERATIONS: JPO CONCERT- library. And we pool resources—my office is in a build- MASTER GARY S. GREENE ing that also houses an office for the orchestra, and we do our auditions there. With respect to various orchestra For several decades, Jr. Philharmonic Orchestra concert- rehearsal locations, because Dr. Katz does so much for master Gary S. Greene has played ebony to founder Dr. youth, there are other groups that see what we do and Ernst Katz’s ivory. As Katz’s nephew, he says he was join forces with us. We are now rehearsing at a private “brought up in the family of music,” attending JPO con- school called the Center for Early Education. It’s a won- certs and rehearsals as a young child, long before he derful marriage because they value having a resident would join the orchestra himself as an adolescent. He orchestra for the students and families to partake in and became concertmaster—the lead first violinist—when he listen to as part of the education process. entered college and has stayed on with the JPO ever since, now taking on many of the day-to-day duties of CC: What’s your view of music training in our schools? running the orchestra. Greene reminisced with Chet Cooper about his history with Katz and the noted youth GG: Music is important for all areas of human life. Peo- orchestra. ple think, “Well, if you cut music out of the schools, so what? Maybe you have a few less musicians.” But it’s Chet Cooper: What are some of your earliest memories much broader than that. Music at its roots teaches disci- with the Jr. Philharmonic? pline, and that gives students a foundation for all other education, for being responsible people. Studying an Gary S. Greene: Well, there is a picture of me at the 17th instrument requires practice and discipline; there’s no anniversary, and now we’ll be celebrating the 70th, so other way about it—it’s responsibility. And belonging to I’ve been around for a while. I remember at that 17th an orchestra means learning to work with other people. anniversary concert admiring the concertmaster and set- ting my goal that someday I would become concertmas- I can give you an example of how successful it is. In the ter just like him. When I turned 12, I joined the orchestra year 2000 we put together a Millennium Orchestra. I as a violinist in the second violin section. From there I reached out to the schools all over Southern California. practiced and worked my way up, and I never left. Now I Many schools do not have music programs, and of those take on a lot more of the duties, including auditioning, that do, most have bands rather than orchestras, so I and I do a little more conducting each year. In fact, this reached out to the schools that had bands. We tried to last concert I did almost all of it. involve kids from all economic, cultural, ethnic and social backgrounds, and the group we put together con- In a nice turn of events, that concertmaster I idolized as a sisted of kids from both affluent areas and poor areas. child attended our last concert, and I invited him to solo We brought together close to 2000 musicians for one sin- with the orchestra at our 70th anniversary. gle rehearsal before a concert at the Shrine Auditorium, Clockwise from L: Phyllis Diller, Leslie Nielsen, Chevy Chase, Dick Van Dyke, Arte Johnson, Michael York, Buzz Aldrin and Louis Nye

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where we were to play John Philip Sousa’s “Stars and concert. Well, we got down to the ranch, looked at the Stripes Forever.” In one hour of rehearsal time, we had site and couldn’t figure out where we were going to put to make this thing work. the orchestra. Mr. Getty suggested, “Why don’t we play the concert right here on the lawn?” And I said, “Well, Now just imagine bringing together even 20 or 30 aver- you can’t put an orchestra on a lawn outdoors without a age middle school and high school kids—you know stage or a shell.” So he replied, “Okay then, it’s simple— they’re going to talk, they’re going to make noise, there we’ll just build you a stage and a shell.” And he did! He are going to be all kinds of issues, so how are you going built it out of wood so it had a nice sound, and we played to get them to perform with one hour’s rehearsal? Well, on a grass knoll below the house. It was a fascinating we brought these 2000 young people into the auditorium, afternoon concert, well-attended and very successful. and you could hear a pin drop because they were all pay- Then after the program they took all the lumber they ing attention. I believe it’s because they all had some- used for creating this stage and used it to frame the Getty thing in common, which was music. And music means Museum, which was built shortly thereafter. discipline. Because of the training that they’d had, they were able in one hour to put this program together and Another story goes back to the early 1960s. The City of make it perfect for the performance that night. That kind Los Angeles at that time wanted to expand trade and set of capability is what music really teaches. up what was called the Sister City program. One of the Sister Cities was Nagoya, Japan, and the Los Angeles CC: Do you ever hear from the orchestra’s many alumni? mayor at that time, Sam Yorty, invited Dr. Katz to play in this exchange. An all-city high school band from Nagoya GG: Last night I was at the Hollywood Bowl and had a was sent to Los Angeles, and our orchestra housed the chance to speak to one of our former members, who had members of the band and performed in concert with played in the orchestra approximately 50 years ago. In them. When they arrived, we found that none of them fact, he was conducting at the Hollywood Bowl—he is spoke English, and no one in our orchestra at the time Leonard Shlatkin, the conductor of the National Sym- spoke Japanese. But we mixed the two groups together phony Orchestra in Washington DC. for a joint rehearsal with Dr. Katz and their band conductor, and without communicating by language, when the A few years ago, we invited another of our alumni mem- baton came down it was amazing—we played perfectly bers to perform with us. Approximately 25 years ago he together. Music is that international language—no matter played trumpet in the Jr. Philharmonic. He is still a musi- what language people speak, they can communicate cian, but he no longer plays trumpet. Today he goes by through music. another name today—Flea—and he plays with the rock group Red Hot Chili Peppers. So our alumni cross the CC: Do you have any favorite memories from the spectrum musically, from classical to popular. anniversary Concert Spectaculars?

CC: What are some of the most memorable concert GG: One year we invited Michael York to narrate for us experiences? in our performance at the Dorothy Chandler Pavilion in Los Angeles, and we selected Camelot, which he had GG: A little over 30 years ago, we were invited to play never narrated before. It just so happened that in the audi- a benefit concert for a children’s hospital in Santa Mon- ence that night was the producer for the next national tour ica. We were going to perform at the Getty Ranch in of Camelot, and based on Michael York’s performance Malibu—the main property of oil magnate J. Paul Getty with us that night he was selected to take the role of King Sr. before the current Getty Museum was built in the Arthur. Pacific Palisades. We were invited by J. Paul Getty and Teddy Getty (his wife at the time, now Teddy Getty Gas- CC: When did the Celebrity Battle of Batons become ton), who had lost their son and wanted to do a benefit part of the Concert Spectacular?

Clockwise from L: Connie Stevens, Gene Barry, Weird Al Yankovic, Flea, Jimmy Durante, Eddie Albert and George Hamilton

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GG: That tradition goes back almost to the founding of narration with us—which was very beautiful—and then the orchestra. Dr. Katz thought, how does one really shortly thereafter he was called upon by the New York focus attention on young people in music? He wanted to Philharmonic to narrate Copland’s “Lincoln Portrait,” create something positive to get the press out instead of and that came out of his experience with us. the negative things that usually end up on the front page of the newspaper. So he began inviting famous people— We had Flea conduct the orchestra when we brought him most of whom were not musicians—to our concerts and back as a celebrity, and he did something most unusual— asking them to come up impromptu and conduct the he stood on his hands and conducted with his feet. orchestra. And that has become the trademark of our anniversary concert for almost 70 years now. CC: Sounds like it was quite a feat.

It’s almost a Who’s Who of Hollywood that participates GG: (laughs) It certainly was. The audience thought it in each year’s Concert Spectacular. For the past 10 years was tremendous, and he won the Golden Baton that year. the Battle of Batons has been hosted by Army Archerd, Some years earlier we had Weird Al Yankovic come, and columnist for the Daily Variety. Each year five celebri- he decided to wrap his foot around his head and conduct ties compete in conducting the orchestra, the audience that way. He was quite dexterous, and he also won the votes for their favorite and the winner gets the Golden Golden Baton. So we’ve had many interesting things Baton. happen. We’ve had a strap or two come off a dress, and we’ve had some really funny people up there. CC: What performances stand out in your mind? One night we had Chevy Chase, and—obviously, you There have been some interesting antics. For instance, knew he was going to do it sometime—he tripped over the comedian Avery Shriver years ago came dressed as a the podium and really got the audience laughing. We also train conductor to conduct the orchestra. invited Buddy Ebsen. He was rather serious, but he was the sentimental favorite and won the Golden Baton. He Also, I will always remember our concert in June 1968, was just so excited about it that he asked the orchestra to the night after the California presidential primary—when perform and celebrate with him his 80th birthday. He Robert Kennedy was shot. The day of the concert invited us out to Palm Desert and we performed at what Kennedy was still alive but in critical condition. Jimmy was at that time the brand-new McCallum Theatre at the Durante was scheduled to come for the Battle of Batons, Bob Hope Cultural Center, in a fundraiser for Desert but he called in the morning and told us his heart wasn’t Hospital. in it because he was a godfather to one of the Kennedy children. But that night, unexpectedly, there in the wings CC: What’s on the upcoming agenda for the Jr. Phil? just before he was supposed to go on was Jimmy Durante, dressed in the way we always picture him with GG: Well, for one thing, our 70th anniversary concert that hat, and he said, “The show must go on.” You will be held at Los Angeles’ Walt Disney Concert Hall. couldn’t get it from anyone more venerable than that— It’s very exciting for the orchestra members to get the and the show did go on. chance to play in what is considered one of the finest concert halls in the world. Then in the early 70s we invited Henry Fonda to be master of ceremonies and participate in the Battle of Batons. CC: Best of luck, and we’ll be sure to see you there! 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 foreword by Sandra Herald and got him going. The interesting thing was, he learned all about our orchestra and orchestral music, and he did www.jrphil.org

Clockwise from L: Stephanie Powers, Pat Boone, Tommy Smothers, Mickey Rooney, Rip Taylor, Bernie Kopell and Gary Owens

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Clockwise from top L: Mark Goffeney volunteers alongside ABILITY Awareness’ Director of Operations Judi Pennella; the ABILITY House take shapes; soldiers from Schoffield Barracks’ medical unit grab a photo op with Miss Universe Natalie Glebova; Jeff Charlebois and wife Nicole help frame the ABILITY House;John Siciliano digs a trench; Siciliano, Charlebois and actor Max Gail finish the day sore but smiling

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ark Goffeney, a musician who lives in San especially to Diego, places a call to airline reservations ask- increase volun- Ming for the accommodations he needs to com- teering opportu- fortably fly the four-and-a-half hours to Honolulu to nities for veter- volunteer building Hawaii’s first ABILITY House. “I ans, recuperating was born without arms,” he tells the airline representa- servicemembers tive, “and I use my feet for things other people use their and college stu- hands for. If there is an empty seat on the plane, I need dents with my seat reserved next to it so I can eat and reach around disabilities. without bumping someone else with my knees.” The ABILITY House A travel veteran, Goffeney is used to the wait required that Goffeney joined in while the clearly confused service representative checks building was constructed in Waimanalo, with her supervisor. He is also used to her next Hawaii, in partnership with Honolulu Habitat for response, a dozen Muzak songs later: “My supervisor Humanity, as the new home for the Kamaiopili family, a doesn’t know about the seat, but we can provide you a grandmother with degenerative back disease and her wheelchair to assist you to and from the plane.” three adopted grandchildren. Construction was timed to coincide with the Pacific Rim Conference hosted annu- A wheelchair, of course, isn’t much use to a man who ally by the Center on Disability Studies at the Universi- can walk—and who also runs, swims, drives a car, ty of Hawaii. The home’s universal design features—a effortlessly entertains crowds as he plays guitar with his no-step entrance, wider doors and hallways and an band Big Toe, and has even been featured in a national accessible bathroom—will ensure that the Kamaiopili TV commercial changing a baby’s diaper with his feet. family and their visitors will continue to have ease of So please, would someone get this man a wheelchair! access for decades to come. And STAT! (And maybe some flight safety instructions in Braille for him to peruse.) Actor Max Gail, a long-time ABILITY House supporter best known for his role as Detective Wojo on the sitcom For every person like Mark Goffeney out there hoping Barney Miller, came out to volunteer, as did actor/Para- others will see that he is an individual and not a category, lympian John Siciliano and comedian Jeff Charlebois. there are many more people like the airline representative who unconsciously pigeon-hole people with disabili- Several servicemembers from the Medical Retention ties into the roles that fit their preconceived notions and Processing Unit at Schoffield Barracks, the Army unit stereotypes. That’s one reason the ABILITY House pro- on the island of Oahu responsible for rehabilitating gram was created. injured soldiers—many of whom have returned from combat in Iraq—made the 45-minute journey from base Each ABILITY House is built through a partnership to lend their muscle to the project. As a special between the nonprofits ABILITY Awareness and acknowledgement for their efforts, Miss Universe Natal- Habitat for Humanity to provide an accessible home ie Glebova, who also joined in the build as a volunteer, for a family where one or more members have disabil- made a visit to the barracks, where she posed for pic- ities. Additionally, the program reaches into the local tures and signed autographs. community, inviting people with all ranges of health conditions and disabilities to join the volunteer team Nancie Ozimkowski, a volunteer who is blind, in constructing the home. As these diverse volunteers described the Waimanalo ABILITY House build as “the work together on the build site, a transformation fre- most empowering experience I’ve ever had.” Ironically, quently occurs in both the volunteers with disabilities she had been married for 20 years to a building contrac- and their able-bodied counterparts. The tangible, tor and remarked, “In all the years of my marriage I cooperative act of building a house together shatters never had the opportunity to hammer a single nail!” myths and stereotypes. As Dr. Patricia Morrissey, commissioner of the Administration on Developmen- Ozimkowski commented that initially she was a little tal Disabilities in the U.S. Department of Health and nervous and didn’t know what to expect. “At first, I Human Services, noted in a recent training video for couldn’t hit the nail,” she said, “but I lost that feeling of ABILITY Awareness, “Volunteerism is a very con- awkwardness within the first hour. At some point it structive way to teach people without disabilities what clicked for me, and by the afternoon I was climbing up people with disabilities are capable of doing.” on sawhorses and scaffolding and pounding nails in. I felt so welcomed, like I really was making a difference. A grant from the Corporation for National and Commu- I wasn’t just a token person with a disability—I was part nity Service, a federal agency supporting volunteerism, of a community that was working.” along with support from Hewlett Packard and founding sponsor ABILITY Magazine, has allowed the ABILITY Like Ozimkowski, Goffeney also hammered his share of House program to expand over the past year, working nails. Additionally, he helped dig a trench, cut out a

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L to R: Goffeney shows his carpentry skills; Glebova signs autographs and recruits volunteers at Schoffield Barracks

doorway and generally filled in with any task that needed astonished at how well she did. She felt where the nail a helping foot. was, and she was driving them in. I was very impressed with her ability, and I think the experience really helped Every ABILITY House draws a diverse group of volun- her as well. She felt such a sense of accomplishment. It teers: retirees and college students, soldiers and civil- was like she didn’t even have a disability—she was ians, people with hidden disabilities such as diabetes or doing it like any other person. It really changed my idea mental illness and people with very visible disabilities of what people with disabilities can do.” like Ozimkowski’s and Goffeney’s. Each day the full range of construction jobs is presented to everyone, and Ferguson commented that she would love to see more each volunteer chooses the job he or she wants to learn. opportunities for people with disabilities to join in volunteering. “I’ve never seen any other organization bring Unlike the airline service representative who was unable anyone with a disability out to help with them, and I to see that a wheelchair is a not a one-size-fits-all think it should happen more. Everybody wants self- accommodation, experienced construction volunteers on worth, everybody wants to help. More groups need to the ABILITY House build site help volunteers with dis- do this. I think of so many different things people with abilities find creative and resourceful accommodations disabilities could be helping with.” that allow them to contribute to their maximum potential. For example, when Ozimkowski first began learn- Most of all, the volunteers appreciated getting to know ing to hammer, the construction supervisor offered her a each other. Said Ozimkowski, “The people I worked mallet that provided a larger hammering surface. After a with, we talked about so many things. It wasn’t just the short time, she moved to a standard hammer and was building that was going on. We were swapping life sto- successfully nailing away, feeling the nail’s position ries, being human. It wasn’t about disability—it was with her hands and listening for the distinctive ping that about being part of a community.” echoed when she hit it straight on. “To group everyone together under one set of rules isn’t going to work,” she Roger Crawford, a well-known athlete and motivational related. “It wouldn’t work for able-bodied people either. speaker who presented at the Pacific Rim conference, con- Everyone has an individual level of assistance they need firmed Ozimkowski’s sentiments about the ABILITY in order to be capable.” House program’s value in breaking down barriers: “To have people working side by side for a common cause is a Charlebois, who has quadriplegia from a spinal cord way we can become educated about a person’s disability. injury, echoed Ozimkowski’s sentiments about the value When you look at someone who has a visible disability, of his volunteering experience. “It makes me feel posi- you may have preconceived ideas about what they can tive and respected to be here, putting whatever I have accomplish. But differences in life don’t mean deficit— into something for somebody else. When I volunteer, it they just mean different.” elevates me as a person.” by Romney Snyder Heather Ferguson, an able-bodied volunteer who worked with Ozimkowski, exemplified how working For more information about the ABILITY House program with volunteers who have disabilities is a rewarding and other programs of ABILITY Awareness, visit opportunity for able-bodied volunteers as well. Fergu- www.abilityawareness.org son 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

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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 musi- Wcal 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 innova- tion 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 Cooper: What led you to choose surfing as the theme of The Beach Boys. How did you get together and where your songs and the theme of your band? did it start? Wilson: Because my brother Dennis said surfing was Brian Wilson: It started in Hawthorne, California, where the new thing, the new fad. He was the surfer in the we grew up, outside of Los Angeles. I rented some group. instruments along with my brothers Carl and Dennis, my cousin Mike and my friend Al Jardine. We played a Friedman: So you weren’t all surfers per se? little and realized our voices blended well combined with the instruments. My Dad had also been a music Wilson: No, I was never a surfer. I never learned. producer and a publisher, and he got us a connection for some studio time. And the rest is history. Cooper: Do you ever think of trying?

Gillian Friedman, MD: So you had a little inside Wilson: No—I’ve gotten along this far without it. knowledge about what was necessary to break into the business. 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. Wilson: (laughs) Okay, I’ll tell you what—in that case, Friedman: How did you choose the name Beach Boys? I’ll ride a big wave for you! No, surfing was just what we thought people would want to hear. Wilson: We didn’t. When we cut the first album we were going to call ourselves The Pendletones, after a Friedman: Did you ever expect, when you started type of sweater everyone was wearing. Russ Regan, a recording, that the group would become such a big hit? promoter for Candix Records, came up with the name The Beach Boys. Wilson: No way, I had no idea about that.

Cooper: And when you got older were you going to Cooper: Was there some crazy piece of luck that pro- change it to The Beach Men? pelled you, being in the right place at the right time?

Brian: (laughs) We considered it, but we didn’t want to Wilson: A lot of it was my dad. He took us to a really confuse our listeners, so we kept it the way it was. good recording studio and helped us out a lot. But he was also pretty tough at times. He scared me so much with his yelling—he would be yelling and poking fingers in my chest, screaming, “Get in there and kick ass and make a good record.””All I could say was, “Okay Dad, all right.” But then we’d go ahead and cut something great like “Good Vibrations” or “California Girls.”

Friedman: At what point did your schizoaffective disorder start to appear?

Wilson: Well, for the past 40 years I’ve had auditory hallucinations in my head, all day every day, and I can’t get them out. Every few minutes the voices say something derogatory to me, which discourages me a little bit, but I have to be strong

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enough to say to them, “Hey, would you quit stalking Wilson: Oh, I knew right from the start something was me? F*** off! Don’t talk to me—leave me alone!” I wrong. I’d taken some psychedelic drugs, and then have to say these types of things all day long. It’s like a about a week after that I started hearing voices, and fight. they’ve never stopped. For a long time I thought to myself, “Oh, I can’t deal with this.” But I learned to Friedman: Do you think the voices were part of what deal with it anyway. made it difficult for you to go on stage for many years? 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 Wilson: Not until I was about 40, believe it or not. A lot today, when I sing I have to force myself not listen to of times people don’t get help as early as they should. them. But when the concert is over, the voices come back. Cooper: Has treatment made your life easier?

Cooper: How old were you when the voices started? Wilson: A little bit. It has made my symptoms bearable so I don’t have to go screaming down the street yelling, Wilson: About 25. “Leave me alone, leave me alone,” and that kind of thing. Friedman: So you were already a successful musician when they started. Friedman: Does anything else accompany the voices?

Wilson: Right. I believe they started picking on me Wilson: Yes, I get intense fear, too. It comes and goes. because they are jealous. The voices in my head are You get the feeling and it goes away. jealous of me. Friedman: Do you remember any of the intense fears Cooper: How long did it take after they started before you’ve had? you really understood what was going on? Wilson: No, not really—they are so bad that I’ve

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blocked them out. I try very hard not to remember them. Cooper: Some people who have a condition with voices But I do know they’ve raised my stress level and made or depression worry that if they take medication for it, me feel depressed a lot. I have to take medication to the treatment will dull them creatively. treat the depression. Wilson: Well, it does dull you a little bit at first, but Cooper: What has depression been like for you? once you get used to it, it doesn’t bother your creative process. Wilson: Well my depression goes pretty low, pretty deep. I get depressed to the point where I can’t do any- Cooper: Do you feel that you are able to produce more thing—I can’t even write songs, which is my passion. creatively because you have some relief from your symptoms? Cooper: Is there anything that brings it on? Anything that seems to make the depression hit harder? Wilson: Absolutely. I used to go for long periods without being able to do anything, but now I play every day. Wilson: Now I get it mostly in the afternoon. I dread the And finishing the album SMiLE two years ago was my derogatory voices I hear during the afternoon. They say biggest accomplishment ever. things like, “You are going to die soon,” and I have to deal with those negative thoughts. But it’s not as bad as Friedman: Unfortunately, the general public really it used to be. When I’m on stage, I try to combat the doesn’t understand psychotic illness very well. They voices by singing really loud. When I’m not on stage, I don’t understand how someone can be intelligent, play my instruments all day, making music for people. thoughtful and creative and also have voices. They can’t Also, I kiss my wife and kiss my kids. I try to use love quite put that together. as much as possible. Wilson: You’re right. I know there are a lot of brilliant Friedman: Have you ever gotten so overwhelmed by the people who have my condition. voices and the depression that you’ve felt you didn’t even want to be alive anymore? Friedman: And contrary to the common perception, when you are walking down the street, most of the time Wilson: Yes, I have, but my friends constantly assure you wouldn’t know who has a mental illness and who me I’m going to be okay, that they’re on my side and doesn’t. It’s not something you can glean from just see- they’re my allies. They tell me they are my guardian ing somebody. But I think the public has a particular angels and they will help me through it. stigma about it. Has there been any situation where you have felt uncomfortable talking about your illness?

Wilson: No, I don’t think so.

Friedman: Well, good, because I think it is very important—especially for people who are known for being intelligent and creative—to let the public know that there is nothing necessarily scary about somebody who has a mental health condition.

Wilson: I say, “We shall overcome.” I use that all the time. We shall overcome all of bad notions people have, the preconceived notions.

Cooper: Do you see a counselor who helps you?

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Wilson: Yes, I’ve been seeing a psychiatrist once a week for 12 years now, and he’s become a really close friend of mine. We talk and he helps me out. He tells me, “Well when you hear the voices, why don’t you make a joke and say to them, ‘How are you doing, Voices? How are you doing today?’ You know, talk humorously to them.” I tried that out and it works a little bit.

Friedman: So it sounds like a really important part of it for you is not just getting the medication, but also having somebody to give you support and practical techniques you can use.

Wilson: Absolutely.

Cooper: In terms of your medicine, is the regimen complicated?

Wilson: Not really. I take Luvox for depression, Klonopin for anxiety and Clozaril to help with the voices and help me sleep at night.

Cooper: It sounds as though that’s a real successful combination for you.

Wilson: Oh yeah, it’s great medicine for me. It’s not too strong, and it works.

Friedman: What are some of the other things that help you get through the day, besides your music?

Wilson: Let me explain what my secret is. I walk five miles a day in the morning, I eat really good food, I get a little sleep at night—four or five hours, sometimes six if I’m lucky—and I use my love with people. I use love as a way to get along with people.

Friedman: Explain to me what that means—using love as a way to get along with people.

Wilson: Well, I sing for people and play songs for them on my synthesizer. I talk to people about music and love.

Cooper: How do you handle bad times?

Wilson: With my will power—or, as I call it, Wilson Power. I go through bad vibes, of course—everybody does—but I get through them because I have just enough will in my last name to do that.

Friedman: (laughs) What about arguments? If you get into an argument, does it stress you out?

Wilson: I used to argue with my wife several years ago, but we are cooling out a little bit. It’s too stressful to argue.

Cooper: What did you use to calm down that arguing? What have you figured out?

Wilson: Love. These days, I try to focus on love. I try to straighten out our problems with love.

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Cooper: So I understand you have really close relation- [Wilson goes to the piano and sings the first few ships with your family. stanzas.]

Wilson: Yes, they’re the light of my life. Nothing brings Friedman: Wow, that was fantastic! joy into my life like my children. I have two girls by a previous marriage who are in their 30s, and now I have Cooper: No stage fright with us? nine- and eight-year-old girls and a little two-and-a-half- year-old boy. And they are all beautiful kids. My chil- Wilson: (laughs) No, not today. dren and my music are my two greatest loves. Friedman: I understand you’ve also been asked to par- Cooper: That’s great. Musically, what are you working ticipate in the Staglin Music Festival, a concert to raise on now? awareness about mental health issues, and they want you to speak a little about your experience with Wilson: I’m recording the song “Rave On,” originally by schizoaffective disorder. Buddy Holly, and also “Proud Mary” by John Fogerty. You remember “Rave On,” right? 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 Fchosen 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 gui- tarist Norman Brown, musicians from the San Francisco Ballet and other noted artists. Following the concert, the evening continues with a gourmet dinner for 300 guests and a sampling of more than 30 wines from Napa Valley’s and Sonoma County’s best wineries. Each year, the dinner is prepared by a celebrity chef, crafted this year by Chef Suzanne Goin of Lucques Restaurant in West Hollywood, the 2006 Beard Award for Best California Chef. Chef Greg Cole from Cole’s Chop House in Napa will provide pre-concert hors d’oeuvres.

The festival also hosts top scientists who talk about their research. Daniel Weinberger, MD, internationally renowned expert in the genetics of schizophrenia, kicks off this year’s gala with a lecture and discussion about physiological brain disorders. Weinberger is based at the National Institute of Mental Health and is a member of the Scientific Council of NARSAD: The Mental Health Research Association (formerly the National Alliance for Research on Schizophrenia and Depression).

Over the 12 years of the festival, the Staglins have raised over $30 million for mental health research. As Garen Staglin has noted, mental illness costs Americans $150 billion a year, but the country spends less than 100th of that amount researching causes and cures. Says Staglin, “Private philanthropy is vital if we are to continue to make progress.”

For more information about the Staglin Music Festival for Mental Health, visit

www.staglinfamily.com/festival_about.html

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concert at that show, trying to raise half-million dollars. We are very happy to be part of that cause.

Cooper: It’s very important. I’ve noticed that you have been involved with many other organizations as well.

Wilson: Yes, we’ve worked with the Carl Wilson Foundation, which helps people who have cancer. It was founded in honor of my brother, who died of lung cancer in 1998. And we raised a lot of money for the survivors of Hurricane Katrina. I agreed to make a personal phone call to anyone who contributed at least $100. We raised $250,000—that was a lot of phone calls!

Friedman: What a tremendous undertaking! It must have been so exciting for people to get that phone call from you.

Wilson: Yes, they were thrilled. I told people that if they donated, they could ask me any question they wanted and I would answer it.

Friedman: I know that you had just performed at Jazzfest in New Orleans a few months before the hurricane hit. It must have been devastating to think about all the loss in that great city you’d just visited.

Wilson: Oh, it was terrible. When it happened I was so concerned about everyone there.

Cooper: Have you been back to New Orleans since that time?

Brian: No, unfortunately I haven’t

Friedman: I also saw that you were named the 2005 Person of the Year by the organization Music Cares, a group that helps provide mental health treatment for musicians who can’t afford it—a great example of the industry taking care of its own.

Wilson: Yes, I was so honored to receive that award. This year’s winner was James Taylor.

Friedman: Of course, he’s another person who has been through a lot of depression and has talked about how important treatment has been for him to be able to do what he wants to do musically.

Cooper: So he has Wilson Power, too!

Wilson: (laughs) Yes, more Wilson Power.

Friedman: It sounds as though you’ve really worked through your stage fright and really get a lot out of performing these days.

Wilson: Yes. I was nervous my first couple of years of performing solo—I didn’t think I’d ever be able to perform on stage again. But I finally overcame my fear.

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Friedman: The public is surprised sometimes about per- would never have known how much agony he was going formers who get nervous going on stage. A couple of through. He’s outwardly so outgoing, but inside he was years ago, we interviewed Donny Osmond, who also tormented by anxiety in a lot of social situations. had stage fright so bad that he thought he was going to have to quit one of his most successful shows, Joseph Wilson: Is he better now? and the Amazing Technicolor Dreamcoat. Friedman: Yes, he got some good therapy, and now he’s Wilson: Really? He was going through all that? a big advocate for other people who have anxiety problems. In your case, after so many years of not perform- Friedman: He said it was paralyzing. And I remember ing in public, what do you think the turning point was seeing him in that show, right about the time it was the for you? worst for him—and of course he was wonderful. 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

Wilson speaks with ABILITY Magazine’s Chet Cooper and Gillian Friedman, MD 52 ABILITY 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 shak- Wilson: I’d be a major league baseball player. ing. But after a few minutes I was okay. Cooper: Did you play well? Friedman: You mentioned that you first started hearing voices after taking some psychedelic drugs. What hap- Wilson: Oh yeah, I played a lot of ball. I was really, pened with your drug use after that? really good.

Wilson: Well, I took a lot of amphetamines and a lot of Cooper: What position? downers. The cocaine and marijuana and all the rest of the stuff I took really messed with my brain. I couldn’t Wilson: Center field. I had a good arm—I could throw tell reality from fantasy. Drugs will mess with your really well. 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 Friedman: Do you ever have any regrets about not turn back now. being able to pursue your baseball career?

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: Well, your fans are obviously happy you didn’t lean towards baseball. And besides, your passion for Cooper: How long have you been clean now? music seems to be quite therapeutic for you.

Wilson: For about 20 years. Wilson: Yes, definitely. And to be honest, your asking me about the problems I have in my head—that was Friedman: Fabulous. Do you have any routine that therapeutic. Thank you very much. keeps you off the drugs? Friedman: Thank you for sharing that Wilson power Wilson: Mainly, I don’t hang out with people who take with us! drugs. foreword by Dahvi Fischer 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: 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 won- dered what you would have taken up if you hadn’t become a musician?

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Jason is a 19-year-old college student. His friends notice Since accurate diagnosis of schizoaffective disorder that he begins staying up all night, not just studying for requires closely observing the pattern of symptoms over exams but also writing furiously in his journals. At first time, the condition may initially be misdiagnosed as they admire his spurt of creativity, but then he begins bipolar disorder or depression (if the diagnosis is made looking disheveled and has a hard time remembering to during a mood episode), or as schizophrenia (if the diag- shower, brush his teeth or comb his hair. He seems a nosis is made when mood is normal). Consequently, flurry of activity, telling them he is launching an Inter- continued re-evaluation is important for all of these ill- net business. At the same time, they notice him putting nesses to make sure the initial diagnosis is correct. With black coverings over his windows and pulling up some schizoaffective disorder, two different categories of of his floor tiles. When they ask what he is doing, he symptoms must be addressed—often with a combina- appears anxious and finally reveals he is looking for tion of medications—for treatment to be successful. hidden cameras. Good treatment involves both medical therapy to relieve Then just as suddenly, one day Jason appears to lose his mood and psychotic symptoms as well as psychological energy. He stays in his room, skips meals and neglects and social therapies to address many of the accompany- his classes. Eventually he stops opening his mail or ing difficulties people with schizoaffective disorder fre- answering his phone. When his friends visit he appears quently face—such as higher rates of unemployment, distracted and has difficulty answering their questions, poverty and homelessness. and he sometimes turns to the other side of the room as if hearing something that’s not there. Fortunately, today there is a wide range of antidepres- sant, mood stabilizing and antipsychotic medications, Jason’s parents help him get a medical excuse for the with dozens more under development. Consequently, rest of the semester, and he spends the subsequent term patients have a good chance of finding a successful at home. When he returns to his old campus the next combination with a minimum of side effects. Unfortu- year, he no longer appears either frenzied or withdrawn. nately, however, only a minority of people with He tells his friends he is being treated for schizoaffec- schizoaffective disorder continue medications after their tive disorder. first year of treatment, so relapse and repeated hospital- ization are common. So what is schizoaffective disorder? Present in about one in every 200 people, schizoaffective disorder pro- But beyond medications, social interventions like group duces ongoing struggles not only with mood symptoms therapy, case management and family support are vital (as in depression or bipolar disorder), but also with for rehabilitation. Traditional insight-oriented psy- psychotic symptoms—disturbances of reality testing. chotherapy is not generally thought to be helpful, with Psychotic symptoms can include hallucinations (voices, better results from supportive and practical interventions apparitions or other false sensory symptoms), delusions that focus on real-life problems and planning, interper- (fixed false beliefs) or disruptions of logical thought, as sonal interactions, social and work roles, recreation and well as social withdrawal and difficulties with planning. cooperation with drug treatment. In schizoaffective disorder, these psychotic symptoms continue to occur even during periods when mood has by Gillian Friedman, MD returned to normal. For more information about diagnosing, treating and living Psychotic symptoms are also present in schizophrenia, with schizoaffective disorder and other mental health and schizoaffective disorder is believed to lie on a con- conditions, visit tinuum between mood disorders and schizophrenia, with National Alliance on Mental Illness symptoms of both. Because disturbances of reality test- www.nami.org ing can have serious consequences, schizophrenia and schizoaffective disorder together are responsible for National Mental Health Association more psychiatric hospitalizations than any other psychi- www.nmha.org atric illness. www.healthyplace.com

54 ABILITY 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 Hall at The Ohio State University Medical Center for three years to a wonderful man, Mark Leder. We inpatient rehabilitation. I learned how to dress, get out Bwere living in a home we had built when we of bed and roll around the building in a wheelchair. were first married. My two-year-old speaking, training After spending five weeks in rehabilitation I was faced and consulting business was doing well. Life was plump with another tough transition—going home. with promise! Then all of this changed on June 13, 1998. HOME HATH NO FURY

During a bicycle ride on our wedding anniversary week- The dream home that Mark and I had built in 1995 had end, a three-and-a-half ton tree suddenly collapsed and become more of a nightmare. When we built it, we came crashing down on top of me. Mark caught sight of expected to live there for an unlimited time. Now I was the tree when it was halfway to the ground. He tried in face to face with steps at the front porch that I couldn’t vain to warn me. I lay on the trail unconscious as Mark climb. Family and neighbors had to build a temporary and two others managed to leverage the tree just enough ramp so Mark could get me into the house. Eventually, to get me out from under its hold. That’s when I woke an electric lift was installed at the front door so I could up and asked Mark, “What happened?” get in and out on my own.

Soon I was taken by helicopter to the Grant Medical Once inside my home, I was faced with more obstacles. Center trauma unit in Columbus, Ohio. When I woke up The stairs to the second story and basement made those in intensive care, Mark broke the news to me: “You areas inaccessible to me. Doors needed to be removed so have a spinal cord injury.” I had undergone four-and-a- I could enter the master bath and shower area. I couldn’t half hours of surgery to repair my broken back and get into the bathtub without someone else’s assistance. neck, requiring a bone graft and insertion of two spine- The laundry room door was removed to allow me access. supporting metal rods. 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

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Rosemarie Rosetti using a reacher in her current home (top left) and planning her new universally designed home

mount as I tolerate these inaccessible conditions. I get UNIVERSAL DESIGN AWARENESS angry doing the laundry as I bang my wheelchair into the washer, dryer and walls in the tight laundry room. I first became aware of universal design housing while The process of taking clothes out of the washer is pro- reading a magazine about a woman who used a wheel- longed since my washer has a lid at the top and I can’t chair and had designed her kitchen so she could roll reach down into the tub to remove the wet clothes. I under her sink and cooktop. Encouraged by this maga- must use a reacher to get clothes out, one sock at a time. zine article, I devoted my time to research, making I know a front loading washer will make this job a lot trips to the library, searching the Internet, speaking easier in my next house. with others who used wheelchairs and visiting with our local independent living center director. As I Since I am the cook of the family, I need access to my learned more about universal design, I came to under- appliances, pantry and cabinets. It is difficult reaching stand that it is more than just a kitchen design—it is items out of my freezer, since it is located on top of the for the entire house and landscape, and it not a design refrigeration compartment. The bottom-hinged oven method just for people with disabilities. Universal does not allow me safe access as I remove a baked design frames construction of products, places and ser- chicken from the oven. The items in the top of my vices so they can benefit the widest possible range of pantry often fall on my head when I try pulling them out people in the widest range of situations without the with the reacher, so I have learned to store only light- need for special or separate design. The more that weight items like crackers and cereals on the top shelf. homes and other buildings are designed from the In the wall cabinets, I can reach items only on the bot- beginning with use by everyone in mind, the more tom shelf, so I rely upon Mark to get items off the upper individuals they will work for without expensive re- shelves. Since my injury, Mark and I have been plan- design and renovation. ning to build a home that would better accommodate both of us—a process that has taken longer than we Mark and I visited homes built by people who used originally intended and has taught us a lot about the wheelchairs and took photos and extensive notes on importance of finding the right resources. which features limited accessibility for the owners and

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which features worked well. After months of informa- walls and redrawing a new floor plan within the original tion collection, Mark began to sketch out a floor plan house footprint. As Mark and I attempted to modify the for our new house. plan, it quickly became apparent that the necessary adaptations were too numerous, and we began to search FINDING THE LOT, BUILDER AND ARCHITECT for an architect. We contacted our friends and our local independent living center, Ohio Bureau of Vocational The home-building process began with choosing a loca- Rehabilitation, for architect recommendations. tion. We wanted to live in metropolitan Columbus, Ohio, so we began to drive around looking for the ideal Our builder also recommended an architect. When I location. We found a new subdivision where two asked this architect, “How would you approach the builders had several lots available. However, we became design of the kitchen for our universal design home?” discouraged because each builder had only one ranch- he answered, “I would let the cabinet company lay out style floor plan to offer. the floor plan.” I immediately knew that if he was going to delegate the entire kitchen design to the cabinet com- Our needs analysis of space within the home revealed pany, this architect was not experienced. these floor plans were not adequate for us. Our current home is 2,200 square feet. Mark and I each have an A second recommended architect sent his resume and a office in our home. The new home needed to be signifi- summary of the projects he had completed. I asked for cantly larger to accommodate wider hallways and larger his references and called three of them. One of them, a bathrooms, kitchen, master closet, laundry and home woman who used a wheelchair had recently hired him to offices. remodel her bathroom, indicated she was still not able to reach any of the electrical outlets and would not recom- Based on referrals, we choose C.V. Perry as our builder mend him. and put a deposit on a lot. Our builder told us we could modify his existing floor plan by erasing all interior A third architect was located out of state, making

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communication difficult and costly. It became obvious sized each room based on our furniture placement and that our project would require face-to-face conferences. pathways of travel for my wheelchair. We considered We interviewed a woman who had designed her own point of use when locating appliances in the rooms and home using universal design features, but she was not rooms within the house. Finally, we detailed the exterior an architect. We realized that our project would need an shell of the home. Throughout the process, we looked architect to officially stamp any final plans. Our search for space wasters like a foyer or hallway that was too for a registered architect continued. large.

A colleague recommended architect Patrick Manley, The new house will have 3,500 square feet of space on RA, AIAA. Manley came to our home with his con- the main floor, consisting of two bedrooms, two home struction manager and feng shui design consultant, offices, two-and-a-half bathrooms, a kitchen, a great Cathy Van Volkenburg. He brought us his reference list room, a laundry/wardrobe and a library in the hallway. and described previous projects where he worked on There will also be a full basement, as well as space for ADA-compliant housing projects, as well as residential four cars in the garages. universal design. I called his three references and got glowing reviews! We had our man! Reading blueprints was a learning experience for me. I needed help comprehending the architectural symbols. THE HOUSE-DESIGN PROCESS For example, throughout the blueprint I saw several red circles and asked Manley what they represented. “Those In the next few months, we held several meetings with are five-foot-diameter turning dimensions for your Manley in which we tried to shoehorn our space needs wheelchair,” he responded. into the builder’s existing house footprint. We realized we were spinning our wheels. The only logical solution At times it was difficult for me to envision the layout of would be to create a unique floor plan from scratch. rooms. Symbols for the kitchen appliances had to be explained. When I needed more explanation, Manley We monitored the square footage to keep the costs lower would draw a sketch of the elevation. We constantly and designed from the inside out. That is, first we posi- reviewed my need for access to storage areas and work tioned the rooms in relation to each other. Then we surfaces.

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Rosetti with interior designer Anna Lyon at the Parade of Homes

The kitchen and bathroom are the most critical design seminar on the design and lighting for universal design areas in a home. To give these rooms expert considera- homes. As a result of our NAHB collaboration, she tion, we hired kitchen and bath designer and universal offered the services of seven graduate students in the design specialist Mary Jo Peterson, CKD, CBD, CAPS, school’s lighting design center, who produced a univer- who lives in Brookfield, Connecticut. We met Peterson sally designed lighting system. at the National Association of Home Builders (NAHB) International Builders’ Show in January 2005. She UNIVERSAL DESIGN LIVING LABORATORY— worked with Manley on the kitchen and bath floor plans A NATIONAL DEMONSTRATION HOME and positioned the cabinets, appliances, plumbing fix- tures and countertops. She also helped select all the At the end of many years of planning, Mark and I items for these rooms. have by necessity accumulated a vast sum of knowledge and experience about resources and pitfalls in One of my best friends, Anna Lyon, is an interior accessible home planning. Because all families want designer. She reviewed the floor plans and elevations beautiful, functional homes that will last through their during the process and made suggestions for improve- lifetimes, Mark and I have committed to making our ments. She also assisted us in drawing furniture to scale home available as a model for others. Termed the Uni- on the floor plan. Currently we are working with her to versal Design Living Laboratory (UDLL), it will serve select the colors and finishes for the cabinets, flooring, as a national demonstration home for the building countertops and walls. industry and the public, showcasing universal design principles. Beyond the interior design of the home, the In August 2005, I became acquainted with lighting exterior landscape will also incorporate universal design expert Patricia Rizzo from the Lighting Research design fundamentals, including a water garden fea- Center at the Rensselaer Polytechnic Institute in Troy, ture. Resource-and-energy-efficient green building New York. We worked together to deliver a NAHB methods, advanced automation technology, a healthy

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home construction approach and the design principles of feng shui will also be demonstrated.

Mark and I are building the home with the help of many corporate sponsors. These sponsors are providing spe- cially 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 Febru- ary 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. The Center for Universal Design at North Carolina Once the home is completed, we will have reached a State University www.design.ncsu.edu/cud milestone in our lives. We hope that others can learn from and become inspired by our home, and that it can The Universal Design Alliance serve as a catalyst for change in the building and design www.universaldesign.org community. AARP by Rosemarie Rossetti, PhD www.aarp.org/families/home_design Adaptive Environments www.adaptenv.org Rosemarie Rossetti, PhD, is an internationally known Universal Designed “Smart” Homes for the 21st speaker, trainer, consultant Century by Charles Schwab and writer. Rossetti is build- www.UniversalDesignOnline.com ing the Universal Design Living Laboratory in metro- Universal Kitchen and Bathroom Planning politan Columbus, Ohio. by Mary Jo Peterson This home will serve as her www.mjpdesign.com residence and will become a demonstration site to bring The Accessible Housing Design File about awareness of univer- by Barrier Free Environments, Inc. sal design to the public and the building industry. She Building for a Lifetime: The Design and can be reached at Construction of Fully Accessible Homes 614.471.6100 or by Margaret Wylde, Adrian Baron-Robbins [email protected] and Sam Clark

For details about the Universal Design Living Laboratory, Beautiful Universal Design: A Visual Guide visit www.UDLL.com by Cynthia Leibrock and James Evan Terry

For details about Rossetti’s speaking business, visit Elder Design: Designing and Furnishing a www.RosemarieSpeaks.com Home for Your Later Years by Rosemary Bakker

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dialysis centers willing to accommodate them. In imagining life on dialysis, their minds are usually filled with images of plastic tubing, impersonal machines and— worst of all—needles.

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. arah Lezotte’s kidney problems started in 1991 with what felt like a case of the flu. Fifty-eight years old About the only group of people who think life on dialysis at the time, she had never experienced any major S is not miserable are those actually on dialysis. When my health problems before, but these flu symptoms were last- team asked dialysis patients to estimate the percentage of ing longer than normal. So Sarah decided to see her pri- time they were in good, neutral or bad moods, they told mary care doctor, who discovered that she had early signs us they were in good moods a majority of the time, of kidney failure. He referred her to a kidney specialist, who drew a slew of blood tests, ordered a pile of x-rays extremely good moods 40 percent of the time and bad and ultrasounds, and finally biopsied her kidneys. Then moods less than 20 percent of the time. In fact, their self- he sat Sarah down and told her the diagnosis: she had reported mood estimates were indistinguishable from vasculitis, a generic term for inflammation (itis) of the those of a group of healthy people we interviewed blood vessels (vasc). Many diseases cause vasculitis, the (matched to the patients by age, gender, race and educa- best known being lupus. But Sarah did not have any of tion level). In other words, based on their self-reports, the diseases that typically cause vasculitis—she didn’t dialysis patients were just as happy as healthy people. have lupus or Sjögrens syndrome or polyarteritis nodosa. She didn’t have scleroderma or sarcoidosis or giant cell Waste products coursing through their veins, a banana arteritis. Instead, she was stuck with the vaguest of all cream pie away from a life-threatening potassium level, diagnoses—plain old vasculitis—as if she had cancer but and they were as happy as healthy people? It is easy to no one could tell her what kind of cancer: “Lung cancer? question these glowing reports of life on dialysis. In fact, Breast cancer? Colon cancer?” the patient asks. “No,” the we had paid dialysis patients to tell us about their moods. doctor replies, “just cancer.” Could receiving money from pleasant research assistants in itself make people happy, thereby causing them to Without a more specific diagnosis, Sarah was stuck with overstate how happy they are? some rather nonspecific treatments, such as prednisone, which puffed her face up like the Pillsbury doughboy, and GLOBAL HAPPINESS REPORTS VERSUS Imuran, a chemotherapy drug that made her feel 90 years ACTUAL MOMENT-TO-MOMENT MOOD old. She dutifully took her pills every day, but her vasculitis continued to wreak havoc with her kidneys. Within Pleasure and pain are not remembered the same way they three years, Sarah Lezotte began receiving dialysis. are experienced. People’s memories are disproportionate- ly influenced by peak experiences and by whether their What would it feel like to have kidney failure and be experiences have good or bad endings. As a result of forced to undergo dialysis to stay alive? To be hooked up these faulty rememberings, researchers are increasingly to a dialysis machine three times a week? Never to be able relying on novel ways of capturing people’s true moment- to eat fruits and vegetables without worrying that you will to-moment experiences. In fact, my research team was experience dangerous levels of potassium in your blood? skeptical enough of the happiness reports we received To fear that drinking more than 48 ounces of liquid in a from dialysis patients that we sent each one home with a day will make you swell up like the Michelin man? shiny new personal digital assistant (PDA) to find out how happy they really were. The PDAs were used to col- I have yet to take care of a patient who looked forward to lect mood data over the course of one week. the initiation of dialysis, no matter how severe their symptoms from failing kidneys. Prior to requiring dialy- We programmed the PDAs to beep at random intervals sis, most experience years of progressive kidney failure. every 90 minutes or so for a week (during waking hours) They watch their blood pressure and take their medicines to ask people about their moods. “Thinking back to right in hopes of delaying the need for dialysis. Most recognize before this PDA beeped, what was your mood? How that dialysis will dramatically change their lives, forcing happy were you? How anxious, depressed, frustrated, them to squeeze 15 hours of treatment time into their joyful?” We gave PDAs to the same two groups I weekly schedules and to forgo travel unless they can find described earlier, the dialysis patients and the healthy

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controls who had reported happiness levels practically identical to each other. By collecting such data over the course of a week—out of the presence of our mood- elevating 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 was in a good mood the majority of her waking hours. In doesn’t look gussied up and a quick smile that doesn’t her case, she had been much sicker in the past, so such an look forced. Despite her diminutive size, she does not answer might be plausible. But most people with kidney look as frail as you would expect from someone who has failure have many additional health problems. Like struggled with kidney disease for more than a decade. Sarah, some have vasculitis, which can affect other body parts. More commonly, people develop kidney failure She told me that when she first developed kidney prob- after years of diabetes or high blood pressure. Conse- lems in the early 1990s, she chose to receive a different quently, many experience not only kidney failure but also type of dialysis called peritoneal dialysis (PD), a form of heart disease, vision loss and damage to their feet and treatment in which her own body was turned into a dialy- legs from hardening of the arteries. Most of the dialysis sis machine several times a day. To do this, a surgeon patients in our study who told us they were so happy had implanted a tube into Sarah’s abdominal wall. The inside several other health conditions to cope with besides kid- of the tube nestled underneath her skin but above her ney failure. Could they really be as happy as they said? It peritoneal membrane, a layer of connective tissue that was time to find out what their PDAs had to say about separates her intestines from the lower layers of fat their moods. underneath her skin. Sarah’s peritoneal membrane acted like a sieve. She would pour one-and-a-half liters of fluid When we downloaded data from the PDAs, we discov- through the tube, which would settle in underneath her ered, just as we feared, that dialysis patients had overesti- skin but above her peritoneum. Waste products in Sarah’s mated how often they were in extremely good moods. bloodstream would drift into her peritoneal space and Rather than experiencing really good moods 40 percent bump into the dialysis fluid hanging out there. The dialy- of the time, as they had told our research assistants, they sis fluid would equilibrate with waste products from her experienced such moods only 20 percent of the time. bloodstream, thereby drawing the toxins out of her blood. Four hours later, Sarah would drain the dialysis fluid and I don’t believe these dialysis patients were lying to our all the waste products within it and then pour in another research assistants to cover up how miserable they were. one-and-a-half liters of clean dialysis liquid, starting the Instead, when they estimated what their moods were like process all over again. She went through this process four in a typical week, they probably thought back over the times a day, with each filling and draining taking up previous week, and the extremely good moods they had another hour, leaving her a few hours of wiggle room to experienced came to mind more easily than the mildly get in all four treatments within a 24-hour period. Then positive moods they had experienced. she would wake up the next morning and start all over again. Science is fun when you develop a theory to explain a phenomenon and can test whether that theory fits with “It was hard for me to be very active when I was on PD,” other phenomena. For example, if the memorability of Sarah told me. “With all that fluid inside me, I felt half- extreme moods accounts for these overestimations, then pregnant all the time, and the pressure on my stomach the dialysis patients should also overestimate the percent gave me pretty bad heartburn most of the time. When of the time they spend in really bad moods—which is you’re on PD,” she continued, “you have to slice your life exactly what we found. They predicted being in extremely up into four-hour intervals, because that’s how long you bad moods six percent of the time, while experiencing have until you need to exchange the PD fluid. So you can such moods only one percent of the time—a result that go out to dinner or you can go out to a movie, but you also punctures the theory that dialysis patients overstated can’t go out to dinner and a movie.” Sarah described her their good moods because they couldn’t acknowledge PD life to me almost matter of factly, with no sense of how unhappy they were. Continuing this line of reason- bitterness. ing, we figured that if the memorability of extreme moods accounts for these overestimations, healthy people When we asked her to estimate her typical mood, Sarah, should also overestimate the percentage of time they like most of the dialysis patients in our study, told us she spend in really good and really bad moods. Which, again,

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is exactly what we found. People—whether healthy or When comparing college life in California and the sick—predicted they would experience extremely good Midwest, most students focus their thoughts on an obvi- and bad moods a smaller proportion of the time than they ous difference between the two locations—the weather— actually experienced such moods. The PDA method was ignoring all the other parts of college life that would proving to be a nice way to compare people’s actual influence their moods. Imagining life in California, Mid- moods to the moods they predicted, revealing that people westerners envision beach parties and scantily clad do not have perfect insight into their emotional lives. classmates. Thinking about life in the Midwest, Califor- nians imagine flat landscapes and parka-clad coeds. Yet So what did the PDAs tell us about how happy these two most of college life has nothing to do with bathing suits groups of people were? Both groups had estimated that or parkas. Students enjoy football games and music they were in good moods approximately two-thirds of the recitals and suffer through organic chemistry labs and time, with some of their predicted moods being extremely 8 a.m. exams, whether they live in California or the Mid- good and some being only mildly pleasant. They had west. In fact, weather does not affect people’s moods as overestimated the frequency of the extremely good much as they anticipate, with good weather primarily cre- moods. But had they been wrong to say that they were in ating positive moods only among those who spend the good moods the majority of the time? majority of their waking hours outdoors.

No. Just as they had predicted, dialysis The same kind of focusing illusion also patients reported being in good moods influences the way people think about approximately two-thirds of the time. illness and disability. When imagining In fact, they reported strikingly similar paraplegia, for example, many people levels of happiness as healthy people, without paraplegia focus on what it as well as similarly low levels of anxi- would feel like to get around in a wheel- ety and depression. Based on their chair or to lose the ability to enjoy moment-to-moment moods, then, dial- favorite pastimes; they do not think ysis patients were indistinguishable about all those aspects of their lives that from healthy people. It appears that would be unaffected by paraplegia, such when these dialysis patients told us as their ability to enjoy a television they were happy the majority of the show, a good conversation or a deli- time, they knew what they were talk- cious meal. When imagining dialysis, ing about. they focus on needles, blood-filled tubes and 12 hours a week of being WHY IS IT SO DIFFICULT TO attached to a machine, ignoring the IMAGINE DIALYSIS PATIENTS other 150 hours of the week when they BEING HAPPY? would not be at the dialysis center. And they overlook the social companionship Dialysis patients are generally happy, they are likely to experience at the and yet few of them would have pre- dialysis center. dicted this could be the case. The general public imagines life on dialysis as being filled But are focusing illusions inevitable? Most experts don’t with unhappiness, and yet in our study the dialysis think so. For example, psychologists Daniel Gilbert and patients were just as happy as healthy people. Why is it Timothy Wilson have shown that college football fans so hard to imagine that these dialysis patients are happy? overestimate how much the outcome of the game will influence their moods over the following week, because When people imagine unfamiliar circumstances, they the fans focus too narrowly on the game without thinking often focus their attention too narrowly on the unique enough about all the intervening events that will affect aspects of these circumstances—the parts of their lives their moods later in the week. Yet these two researchers that would change—without considering the many ways have also shown that this kind of focusing illusion can be their lives would be unaffected by the new circumstances. avoided. When football fans fill out an imaginary diary Psychologists call this phenomenon a focusing illusion. describing the week they expect to experience following Imagine, for example, that you are a high school senior a football game, they think more broadly about all the choosing between attending two similar universities, one events in a typical week, other than a football game, that in the upper Midwest and the other in Southern Califor- would influence their moods. As a result, they no longer nia. Where do you think you would be happier? If you mistakenly predict how strongly the football game will are like most people, you would expect to be happier in affect their moods. California where you would be able to enjoy year-round sunshine. Yet when psychologists David Schkade and CAN DEFOCUSING HELP? Daniel Kahneman measured the happiness of college students in California and the Midwest, they found no differ- Encouraged by these results, my colleagues and I set out ence. Both groups of students were equally happy. to see if we could rid people of a focusing illusion when

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they imagined life with a disability. We tried to defocus people, to get them to think more broadly about how disabilities would affect their lives. Wor- ried 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 real- ize that the disability in question would have little effect on their lives as a whole.

As expected, we found that many viewed these disabilities less negatively after thinking more broadly about their lives, commenting on how our defocusing exercise helped them think more thoroughly about what life with a disability would be like. But to our surprise, for every person who viewed life with a disability less negatively after our exercise, two or three others viewed the disability more negatively. For most, the more they thought about life with a disability, the worse they imagined it would be.

People overestimate the long-term emotional impact of illness and disability, imagining that kidney failure or a spinal cord injury will make them miserable, when, as we have seen, the majority of people with kidney failure and spinal cord injuries are happy. Indeed, there seems to be no easy way to get people to think more broadly (or accurately) about what life with such circumstances is really like.

As mentioned earlier, I met with Sarah Lezotte three months after she had participated in our PDA study in hopes of gaining some insight into how dialysis patients manage to find happiness despite having such poor health. What I didn’t mention was that by the time I met with Sarah, she was no longer a dialysis patient. Two months after completing our PDA study, she received a kidney transplant. Her health was now better than it had been in more than a decade, and she was feeling more energetic and optimistic than she had in years. I was delighted about her good fortune, but I still wanted her perspective on how she had been able to find so much happiness during her long struggle with kidney failure. So I was surprised to learn now that she did not have very positive memories of her life on dialysis.

“Dialysis days were essentially lost,” she told me. She explained that she would drive 40 minutes to the dialysis center, remain there for three-plus hours on dialysis, and then drive 40 minutes back home. By then, her morning would be gone, and after a brief lunch she would settle down for a nap, exhausted by the long commute and the tiring dialysis session. But the truly hard part was the wiped-out feeling she got after the session.

Sarah had given me insight into how dialysis had affected the rhythm of her day-to-day life, but I still did not have a feel for how it had affected her overall mood. “Oh, I hated being on dialysis—it was miserable,” she said.

Miserable? I was surprised because I had her data. I knew Sarah was happy during her dialysis days, or at least I knew that she said she was happy when she carried around our PDA. I reminded her that she reported being happy the majority of the time. “Yes, I believe you,” she said. “But you see, unlike other dialysis patients, I had hope for receiving a transplant. I don’t know if I would have been so happy if it hadn’t been for that hope”—a happiness, by the way, that she had largely forgotten about a few minutes earlier when describing her life on dialysis.

HINDSIGHT ISN’T ALWAYS 20/20

As we’ve discussed, healthy people frequently underestimate how happy

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they would be if they experienced serious illness. But When I asked Sarah Lezotte to think back on her dialysis when I met with Sarah Lezotte, I witnessed another type days, she focused in on those aspects of her life affected of misperception: having been on and off dialysis for the by dialysis—that same focusing illusion I discussed ear- previous 10 years, she now seemed to have an overly lier, the one that is so hard to get rid of. She also seemed negative view in retrospect of what it had been like to to dismiss the idea that she had adapted to life on dialy- experience kidney failure. And so, rather than gaining sis. But she, too, could be prodded to think about her insights about how she found happiness despite such a emotional resilience. When she recounted her past mis- serious illness, I found instead that her instinct was to ery and lamented about her inability to go on if not for minimize just how happy she had been. With the success her hope for a transplant, I asked her to think about what of her new transplant, Sarah was quite happy now. she would have done if she found out she could not Indeed, after all she had gone through to complete the receive a transplant. She quickly reappraised her situa- transplant, she assumed she must be much, much happier tion. “I imagine I would have found some way to deal now than she had been before the transplant. with that, but I don’t know how,” she replied. People intuitively grasp the idea of adaptation. They just may Sarah Lezotte is by no means unusual in being somewhat not know how it happens. out of touch with her own emotional life. People are so convinced that happiness is a matter of circumstance that Sarah knows more about what it is like to live with kid- they forget how much they are actually able to adapt to ney failure than I will ever learn. Yet despite this their circumstances. I should have expected Sarah’s mem- knowledge, gained through such prolonged experience, ory to be tricked in this manner. We had already discov- she is susceptible to the same tricks of memory and ered in our PDA study that people have powerful intu- imagination as the rest of us. What was it like to be on itions about how severe illness ought to affect them, and dialysis? I do not think she can answer that question that these intuitions shape the way they perceive their very easily. Perhaps if I had filmed a day in her life emotional lives. For example, we asked our dialysis while she was on dialysis and played it back to her, she patients to imagine what their moods would have been could have given a more accurate report of her emo- like if they had never experienced kidney disease. They tional life at that time. But I am doubtful even that predicted that they would live in an almost perpetual state would work. What would any of us make of such a of glee, a level of happiness significantly higher than the film? Would we watch ourselves brushing our teeth and moods our healthy control subjects actually experienced. cleaning dishes and assume that we must have been These overestimates occurred because people had trouble having a miserable day? imagining that big changes in their lives would not have large emotional consequences. Sarah Lezotte is a remarkable woman. She has main- tained an optimistic view of life despite everything she THE EFFECT OF TIME has been through and plans to return to doing charitable work once she recovers completely from her new kid- Is there anything we can do to improve the way people ney transplant. Sixty-eight years old, with the best think about circumstances they might encounter? My health she has experienced in a decade, she hopes to get research team has found that people’s predictions about out of the house and give something back to the world. I the emotional effects of illness and disability change totally admire her for the way she has fought through all when they are prompted to think about how their emo- her health problems. And I wish her the best of luck in tions are likely to change over time. We asked a group of achieving her new goals. Meanwhile, I will try not to people to imagine how happy they would be if they had think about the problems she might encounter en route paraplegia. Then we asked them to think about a terrible to the decade of charitable activities she envisions. I event that had occurred in their lives six or more months don’t even want to consider the possibility that her new ago. Did their emotions get stronger or weaker over time? kidney will fail, or that at the age of 68, some new ill- Did the event influence their long-term moods more or ness will enter her life and prevent her from living out less than they would have guessed? Do they think the her dream. Nor will I let myself think of the likelihood experience of paraplegia would get stronger or weaker that she will emotionally adapt to her kidney trans- over time? After a few such questions, we asked them plant—that she will soon get used to the joys of vegeta- once again to imagine how happy they would be if they bles and bananas and iced tea, taking them for granted, experienced paraplegia. Their estimates changed and, one day at a time, putting off that dream of doing dramatically—they predicted much more happiness than charitable work. I won’t let myself think about this. I they had previously predicted after they had thought don’t even want to imagine the possibility. 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 The above excerpt is abridged from the book You’re Stronger Than You Think: Tapping Into the Secrets of after experiencing a spinal cord injury, and they estimate Emotionally Resilient People, by Peter Ubel, MD, copyright dramatic improvements over time. They know that adap- 2006 by Peter Ubel and published by McGraw-Hill books. tation happens, but many do not think about adaptation Dr. Ubel is a professor of medicine and psychology at the unless prompted. University of Michigan.

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