ABILITY Magazine Fran Drescher

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

M ANAGING E DITOR Jane Wollman Rusoff

C ONTRIBUTING S ENATORS Chuck Grassley (R-Iowa) Tom Harkin (D-Iowa)

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E DITORS

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LETTER FROM THE EDITOR — The Cruise Controversy

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SENATOR GRASSLEY — An Ounce of Prevention

Leah Algier, MD Hope Allen Eve Hill, JD Glenn Lockhart Gale Kamen, PhD Noelle Kelly Debra Mandel, PhD Kimberly McCord Josh Pate Maya Sabatello, JD Romney Snyder Susan Snyder

H EALTH E DITOR

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HEADLINES — Lung Cancer, MS, Harry Potter, Hearing Loss

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HUMOR THERAPY — Baseball for Lawyers

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TOYS THEATER — Russian Performers Who Are Deaf

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HEARING LOSS — Role Models in Medicine

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NFB-NEWSLINE — Phone Delivery

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COLORADO TRAVEL — Year-Round Adventure

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RECIPES — Spice Up Your Life

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FRAN DRESCHER — An Interview

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ENDOMETRIAL CANCER — What All Women Should Know

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EMPLOYMENT — On the Road with Ticket to Work

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MARK GOFFENEY — The World at His Feet

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VALERIE SOBEL — Remembering Her Son

MARKETING/PROMOTIONS

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WORLD ABILITY FEDERATION — Special Section

PUBLIC RELATIONS

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EVENTS/CONFERENCES — Special Section

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H UMOR E DITORS Valerie Sobel

Jeff Charlebois Gene Feldman, JD

W EB E DITORS Paul Kim

A RT D IRECTOR Kristian Olson

G RAPHIC A RT / I LLUSTRATION

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Leah Demeter Steve Mikailoglu

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Larry Goldstein, MD

Errata—In our Jane Pauley issue we mistakenly named Harriet McBryde Johnson as an editor rather than an interviewee.

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NEWSSTAND CIRCULATION John Cappello

EDITORIAL

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Dear Readers, Generally I avoid making any comment about religious objections to medical treatment. Different belief systems operate from their own sets of assumptions. A physician who discusses psychiatry with a Scientologist is like a cattle-rancher who confronts a vegan about the ethics of eating steak. When people’s arguments are based on differences in their value systems, they don’t convince each other with logic.

But Tom Cruise has thrust himself and his anti-psychiatry tenets into the media spotlight. After publicly criticizing actress Brooke Shields for treating her postpartum depression with the antidepressant Paxil, Cruise followed up with an over-the-top performance on NBC’s Today show. He chastized Today’s Matt Lauer with, “You don’t know the history of psychiatry—I do,” then showed his level of credibility by incorrectly referring to Ritalin (a medicine used for attention-deficit disorder) as an antipsychotic (a medication used instead to treat hallucinations in illnesses like schizophrenia).

One of the patients at the community program where I work was moved to respond to Cruise’s primer. This young man’s psychiatric treatment for schizophrenia has given him relief from paralyzing fears that others are following him and talking about him. With treatment, he feels safe leaving his residence, has found a job, has rejoined the community, and has not been hospitalized in many years. In our program, he not only receives medication, but works at least twice a week with social workers and other therapists (the type of broad-based treatment advocated by the psychiatric community and groups like the National Alliance for the Mentally Ill, but not currently available to many people in the absence of laws addressing insurance parity for mental health services). My patient’s response to Cruise: “I think he’s really misinformed. He just does not understand about psychiatric disabilities. People need their meds.”

Many experts have supplied factual counter-arguments to Cruise’s statements. But there is a very disturbing message underlying Cruise’s position beyond the dispute of facts. Cruise’s claim that he criticized Shields because he “really cares about her” and wants to protect her from the “pseudoscience” of psychiatry comes dangerously 6

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close to the patronizing attitude people with disabilities have fought so hard against in the patients’ rights movement. The basic tenet of both the patients’ rights movement and the disability movement is that the true experts are the people who are themselves affected.

Only someone who has experienced the depths of depression can say whether the side effects of medication are worth the benefits. And not everyone will come to the same conclusion.

Many different opinions and philosophies about healing can be simultaneously valid, depending on one’s individual situation, values and experiences. One man’s meat is another man’s poison. One of the great strengths of the disability movement has been its encouragement of pluralism and individual decision making.

Some vocal advocacy groups within the disability movement are, like Cruise, skeptical about mental health treatment and do not necessarily believe psychiatric illness exists. Groups like MindFreedom and the World Network of Users and Survivors of Psychiatry (WNUSP) have given voice to people who believe their experiences with mental health treatment have been traumatic rather than helpful. While consumers like Shields and my patient might not embrace these organizations’ aims, the groups do not denigrate people who choose to continue psychiatric treatment. The organizations work internationally to address the societal stigma of receiving a psychiatric diagnosis and maintain focus on the rights of people receiving any type of treatment, including mental health treatment.

If Cruise really does his research, he will find that one of the most important aspects to mental health is understanding the validity of one’s own experience; he will encourage people to find their own empowerment, whether or not they agree with him. Until then, we must have faith that consumers understand what he apparently does not.

Sincerely, Gillian Friedman, MD Managing Health Editor Do you have an interesting story from your life? Do you know someone who has made an impact in your community? Do you have topics you would like to see in ABILITY? Get involved! editorial@abilitymagazine.com Subject: Getting Involved

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system and community infrastructure, from housing to transportation and other social services, as the enormous baby boom generation lives for decades beyond retirement. As family units become separated due to job transfers and relocations, aging parents increasingly must cope without the security of knowing a loved one will be there to tend to them.

People used to equate long-term care with the hometown nursing home. And although nursing homes serve a great need in a community, I have yet to meet one person who can’t wait to become a resident. In fact, for most, institutional care is an option of last resort. Few people prefer to trade their independence for the around-the-clock care provided by the nation’s 17,000 nursing homes. Beyond that, nursing home care is very expensive, costing up to $70,000 a year. Now that’s sticker shock.

AN OUNCE OF PREVENTION IS WORTH A POUND OF CURE Dear ABILITY Readers, Benjamin Franklin’s time-tested bits of wisdom hold relevance to modern-day politics, life and leisure more than two centuries after his death. A public servant, philosopher, scientist, printer and inventor, the 18th century statesman left a legacy that continues to shape our American way of life 229 years after he became the oldest delegate to sign the Declaration of Independence. As a 21st century federal lawmaker working to craft policy for the public good, I agree with Franklin’s no-nonsense advice for life.

One famous Franklin quip arose from his efforts to prevent severe economic loss and personal hardship created by fires ravaging Philadelphia: “An ounce of prevention is worth a pound of cure.” His fire-prevention crusade also led Franklin to help found an insurance business to help homeowners get back on their feet and avoid irreversible economic damages.

As chairman of the Senate Finance Committee, I’m leading an effort in Washington to help folks mitigate risk and avert a financial meltdown sparked by expensive long-term care services needed for chronic illness or impaired physical or mental abilities.

As Americans lead longer, healthier lifestyles, people from all walks of life look forward to maintaining a comfortable standard of living in retirement. Our society is experiencing a remarkable shift in demographics that will require a major shift by both the public and private sectors to accommodate the needs of an aging American population. Longevity has launched a transformation of sorts across America. Just consider the needs and challenges facing our health care delivery 8

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As longevity climbs, so does the diversity of long-term care choices in America. Consider the real estate developments cropping up in communities across the country.

Planned retirement communities, assisted living facilities, home health care agencies and other long-term care programs offer people of varying ages and abilities the opportunity to choose the quality and level of care that best suits their needs.

Making long-term care affordable, of course, is the real issue confronting the public and policymakers. That’s why I’m promoting bipartisan legislation, the LongTerm Care and Retirement Security Act of 2005, that would offer tax incentives for people to buy long-term care insurance policies. Our bill would give people an above-the-line tax deduction for the cost of their longterm care insurance policies. (This special type of deduction applies before adjusted gross income is calculated, thus providing additional benefit to eligible taxpayers regardless of whether they itemize or take the standard deduction.) The bill also would allow employers to include the deduction provision in their benefits menu, along with flexible spending accounts that let employees set aside pre-tax earnings to pay for longterm care insurance.

Many people in their 20s and 30s may not give much thought to their retirement budgets, much less consider what it would take to pay for long-term care. But younger workers need to be prepared for the unexpected. The invincibility of youth can tragically be taken away by an accident or chronic illness. As a policymaker, I’d like to put incentives in place that create a mindset among all individuals, regardless of age, that you can’t afford not to buy private long-term care insurance.

My plan would promote personal responsibility, reward smart money management and restore integrity to the public financing of long-term care.

In June, I led a two-day hearing to examine the federalstate Medicaid program. The public health insurance

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system provides coverage for 53 million Americans.

Through Medicaid, taxpayers now cover roughly half the cost of nursing home care each year. Witnesses at my hearing revealed how the system is being used by many middle- and upper-income families to shift the cost of nursing home care to the government. Medicaid is not an asset protection program. Gaming the system is a disservice to the millions of low-income families and individuals with disabilities who depend on Medicaid for health coverage. Closing down the legal loopholes that could bloat the system by as much as $1 to 2 billion over the next five years would help Medicaid serve those it is intended to serve: the elderly poor, individuals with disabilities and uninsured children in lowincome families.

My long-term care legislation also seeks to recognize and reward the sacrifice of those I call the laborers of love—family caregivers. Our society owes a debt of gratitude to these individuals who offer their time and tireless service to friends, neighbors and loved ones in need through countless hours of personal care, supervision, housekeeping and meal-making. Family caregivers help loved ones retain independence longer and live in the comfort of their own homes. Don’t forget, this legion of Good Samaritans is keeping countless frail elderly people and individuals with disabilities out of expensive institutional settings. My bill would allow

individuals or their caregivers a $3,000 tax credit to defray long-term care expenses, such as medical supplies, home nursing care and respite care.

Franklin’s advice remains wise. An ounce of prevention is worth a pound of cure. More people ought to plan ahead and capitalize on financial tools available in the private sector to make long-term care affordable, promote smarter stewardship over retirement dollars and alleviate the risk of impoverishment in their golden years.

Sincerely,

Senator Chuck Grassley

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or 4-AP). The study, which is based on a Special Protocol Assessment issued by the FDA, will evaluate the safety and efficacy of Fampridine-SR in improving walking ability for people with multiple sclerosis (MS).

LUNG CANCER CELEBREX GETS SECOND LOOK

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fter a lengthy re-evaluation process and the addition of new monitoring guidelines, The University of Texas M. D. Anderson Cancer Center has reactivated a lung cancer chemoprevention trial studying celecoxib, an anti-inflammatory medication also known as Celebrex.

In the wake of preliminary research elsewhere suggesting celecoxib might slightly increase the risk for stroke or cardiac events, M. D. Anderson voluntarily suspended the trial of the popular medication last December at the request of Pfizer, the maker of the drug, and the National Cancer Institute, the funding source for the study, until further data on the drug could be analyzed. In February, advisors to the Food and Drug Administration (FDA) recommended that celecoxib continue to be studied in the treatment and prevention of cancer. The investigators at M. D. Anderson have added stringent guidelines to reduce risk to participants and insure the drug will be safe.

“At this point, there is nothing available to deter lung cancer in smokers, even in those who have quit,” said Jonathan M. Kurie, MD, principal investigator and professor in the Department of Thoracic/Head and Neck Oncology. “In looking at the data, we believe the potential benefit to the patient is greater than the risk. We continue to believe this drug has potential to reduce the risk of lung cancer, and that is a tremendous opportunity not to be overlooked.”

Lung cancer is the leading cause of cancer mortality in both men and women, accounting for 28 percent of all cancer deaths in the United States, according to the American Cancer Society. There are bout 173,000 new cases of lung cancer diagnosed in this country each year, about 90 percent occurring in current or former smokers.

WA L K I N G D R U G MS TREATMENT ENTERS PHASE III TEST

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corda Therapeutics has announced that it has initiated a pivotal, phase III clinical trial of FampridineSR, a sustained-release tablet formulation of the investigational drug Fampridine (4-aminopyridine,

The primary outcome measure for the study will be an improvement in walking ability; secondary outcomes will include measurements of leg strength and muscle spasticity.

“Today’s MS therapies act to prevent relapses and slow the progression of the disease but do not address the considerable loss of function experienced by these patients,” said Andrew Goodman, MD, director of the MS Center at the University of Rochester Medical School and chairman of Acorda’s MS advisory group.”

A drug that could improve walking ability would be a significant and complementary addition to the current array of available therapies.” According to the North American Research Committee on Multiple Sclerosis patient registry, approximately 80 percent of people with MS experience some degree of walking impairment. Additionally, mobility issues tend to worsen over time and seem to be independent of the type of MS diagnosed.

The most recent multi-center, phase II clinical trial of Fampridine-SR enrolled 211 patients with MS. The results showed a positive trend for improvement in average walking speed as measured by the Timed 25-Foot Walk, and a statistically significant improvement in leg muscle strength as measured by the Lower Extremity Manual Muscle Test. These data are consistent with the results of earlier phase II trials.

Adverse events seen in previous clinical studies have generally been rated as mild to moderate and have included insomnia, paresthesias (numbness/tingling in the limbs), dizziness and nausea. Seizures were reported in a small number of patients, at higher doses than are currently being evaluated. As Fampridine-SR is an investigational drug, safety and efficacy have not been fully determined.

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erizon Communications has awarded the American Foundation of the Blind (AFB) a $200,000 grant to promote the new career of Braille Textbook Transcriber and improve literacy for blind and low-vision schoolchildren.

The funds will launch online community college-level courses designed to train transcribers to produce textbooks and instructional materials in braille. AFB is working on this effort in collaboration with Northwest Vista College in San Antonio, Texas; the Texas Education Agency; and 35 of the leading national organizations and

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associations in education, literacy and service to the blind and low-vision population.

“The online curriculum is a critical step toward meeting the needs of blind and low-vision schoolchildren across America, who currently wait months to receive textbooks and instructional materials in braille,” said Carl R. Augusto, president and CEO of AFB. “We are deeply appreciative of Verizon’s commitment to continuing this partnership and its long-standing dedication to championing literacy in America.”

It is estimated that the U.S. needs 380 full-time transcribers now, will need 735 additional transcribers in five years, and will need 1,020 additional transcribers in 10 years. Current transcribers are dedicated but unpaid volunteers who cannot meet the demand for brailled textbooks and learning materials.

Since 2002, AFB’s partnership with Verizon has propelled the lack of timely and appropriate textbooks and instructional materials for schoolchildren with vision loss into the forefront of education and policy discussion. This national effort has forced policymakers to look at what access truly means for students who are blind or low-vision.

H A R RY P O T T E R WEBSITE USES ACCESSIBLE TECHNOLOGY

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he official website of Harry Potter author J.K. Rowling is new—and very much improved for fans with disabilities. Lightmaker, the site’s designer, has worked closely with the Royal National Institute of the Blind (RNIB) and Macromedia to pioneer a fully accessible site. The website is navigable by keyboards without the need for a mouse, and the homepage contains an accessibility menu so users can quickly gain access to features that enlarge webpage text, turn off background noise, pause onscreen movements and add captions to sound.

Rowling said, “www.jkrowling.com allows me the opportunity to be able to communicate directly with as many Harry Potter fans as possible. I am therefore delighted that [fans with disabilities] can now be a part of this.”

Lightmaker designers have managed to create an accessible version of the site that includes visual elements, links, images and text, while still maintaining a rich visual experience for fans without disabilities. To do this, the site relies heavily on Macromedia Flash technology.

“The website is the best example of accessibility and design in rich media on the web today,” said Bob Regan, senior product manager with Macromedia. “The site

shows that great designs and accessibility in multimedia content are not mutually exclusive and creates a unique and playful experience for all fans of J.K. Rowling’s work, regardless of disability.” www.jkrowling.com

HEARING HELP

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DEAFNESS ON THE RISE ore and more Americans are finding it difficult to hear without using a hearing aid, according to a new survey by the Better Hearing Institute (BHI).

The BHI MarkeTrak survey, the most comprehensive of its kind, found that 1 in 6 baby boomers (ages 4159) has experienced a degree of hearing loss, and most people with hearing loss are younger than 65 and still in the workforce. Furthermore, the study revealed that 1 in 14 Generation Xers (ages 29-40) already have hearing loss, and at least 1.4 million children (aged 18 or younger) have hearing loss. Yet, despite the rising incidence of hearing loss, only about 1 out of 4 people with this problem use hearing instruments, and more than a million children with hearing loss are not getting treated.

BHI researchers found that for the 24 million Americans with untreated hearing loss, the impact of doing nothing about this problem equates to at least $100 billion in lost income per year. On average, the income decline is cut in half for hearing aid owners.

“People are still embarrassed to admit they have hearing loss and get hearing aids. But the price of their vanity is lost earnings for the rest of their lives, a diminished ability to communicate effectively, family problems and a host of other troubles,” said Sergei Kochkin, PhD, executive director of the not-for-profit BHI and the principal MarkeTrak researcher.

Once people try hearing aids, the vast majority feel their lives have improved, according to survey findings. Overall consumer satisfaction with new digital hearing instruments is 77.5 percent, an increase of more than 14 percentage points since 2000. “With the increase of Bluetooth for cell phones and the growth of MP3 players with earphones, there is greater acceptance of devices for the ear,” said Dr. Kochkin. “We hope this trend helps people overcome their anxieties about using instruments to aid hearing.”

The BHI’s MarkeTrak survey utilized 53,000 members of the National Family Opinion panel to track the incidence of identified hearing loss in the United States. It is the seventh MarkeTrak survey to be released since 1990. www.betterhearing.org ABILITY 11

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ne of the great benefits of being a child is to play a game, such as baseball, and modify the rules to suit the circumstances. Instead of swinging and missing the ball and being called out on strike three, the youthful batter simply says, “Do over.” Calling a doover erases the mistake and provides an instant source of redemption.

The ability to get the other players to go along with the do-over can be a point of contention, however. When the do-over is contested by one or more participants, the burden then shifts to the player requesting it. “Yes, that is a do-over because the sun was in my eyes and I didn’t see the pitch coming and the pitcher was standing too close when he threw the ball.”

Naturally, the other plays will retort, “Who cares if the sun was in your eyes. If you didn’t wear your baseball hat sideways you would have seen the ball. Not only that, but Billy the pitcher was standing with his foot on the rock, just like he was supposed to. It’s not a doover, you’re out and that is that. Batter up!”

At that point, the player calling do-over has lost the argument and has to take a seat, unless he is fortunate enough to have brought the ball, the bat or perhaps one of the few available baseball gloves. In that case, if he’s out, he’s suddenly feeling very homesick and so is his stuff. If the very ability to play the game is at stake, this is sufficient cause to freshly consider the do-over.

More likely than not, this equipment-laden player calling the do-over is not the all-star shortstop. He’s the right fielder, long-winded in argument but short of breath in chasing down missed fly balls. The better players confer among themselves. The very integrity of the game is at stake if the do-over is permitted. Still,

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without the do-over, it is game-over, and their desire to write a five paragraph composition about some longdeceased historical figure is even less than their desire to enforce the rules. All right, it’s a do-over, but that is the last time.

The State Bar of California, the august body responsible for regulating the conduct of lawyers, has seemingly not forgotten the joy of baseball, because the do-over is alive and well in its governance. One of the rules of being a lawyer is that the lawyer gets to keep the client’s money only if the lawyer earns the money. If the client gives the lawyer money to pay someone else and the lawyer uses that money to buy a new Porsche, then that is good news for the car dealer and bad news for the client. There is a venerated expression for such lawyers: they are called thieves.

Thieving lawyers often end up ripping off enough money for their nefarious activities to come to the attention of the State Bar. The lawyer can be invited to not practice law ever again, with one exception—the do-over. A disbarred lawyer can submit papers saying, basically, Yes, I was a crook, but now I’m a credit to humanity, and pretty please with a cherry on top let me practice my chosen profession.

The people at the bar get together and decide if there is going to be a do-over. Much to the consternation of the State Bar, it seems that several lawyers who had been in time out were readmitted and starting ripping off a fresh batch of clients. Now the bar is faced with having to disbar them anew. Blinded by the glare of the client trust account—it happens. Do over!

by Gene Feldman

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Your miles can build a home. A home that will provide relief, a future and the offer of hope. By uniting with the ABILITY House project, you can make this dream come true for low-income people with disabilities. Become an active participant and donate your Frequent Flier Miles to help expand this program throughout the United States and around the world. Simply call 1-800-421-4655 and specify the ABILITY Awareness Foundation as the recipient. To learn more, visit united.com and abilityhouse.com. Through United's Charity Miles Program, it's easy to show you care. Start redeeming your miles for something truly rewarding today.

UNITED is proud to support the ABILITY Awareness Foundation ABILITY 13

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o one forgets that instant of childhood joy upon entering a toy store filled with noise-making race cars, colorful plastic food, elaborate toy train layouts and enough feather-soft stuffed animals to fill a small zoo.

Children may grow up, give away their teddy bears and claim to be adults, but there is always a remnant of that spark, a tiny voice that comes alive on holidays or vacations and says, “I want to play!”

Oleg Golovushkin, creative director of TOYS Theater, an all-deaf ensemble from the Baltic town of St. Petersburg, refers to that universal desire when explaining why TOYS Theater adopted its name. “Toys are for all. Kids, parents, teachers, senior citizens—they all have toys of their own.” With no spoken lines and the pervasive use of music, dance, mime, gesture and visual effects, TOYS Theater employs the universal language of humor and play in a manner that appeals to both deaf and hearing audiences of all ages.

In the spirit of fun, TOYS Theater invites audiences to play along during performances; actually, they insist on it. “We welcome participants. It’s what we want; it’s why we perform. When we’re on, people in the seats stand up and interact if they want to, and they ABILITY 15

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Their first script cast three of them as quintessential toys, giving rise to the group’s name. Troupe member Alexander Filimonov played a clown that flitted across the stage with a huge windup key on his back. Loudmila Romanovskaya and Ilya Goltsov portrayed dolls—one an innocent memento of childhood and the other its counterpart, a bratty boy given to good-natured mischief. Rounding up the foursome was Vassily Solonitsky, a cook who deftly served up laughter.

often do. There are no cultural barriers, no age barriers and no language barriers.” Each performance is a mixture of various kinds of visual theater, including dances, clown acts and drama, which pulls audiences into a magical romp and provides a glimpse into Russian and deaf cultures.

STARTING OUT IN LENINGRAD TOYS Theater was first formed in 1985, when its historic home city of St. Petersburg was still known by the communist moniker of Leningrad. The St. Petersburg Cultural Center for the Deaf received government money to fund a traveling theater of the deaf, and there was a call for actors to audition. The final slate came to four performers. After 20 years, those four actors are still together.

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The embryonic theatrical group wanted to carve out an identity beyond the commonality of hearing impairment. Visual arts were the group’s forte, and they understood that dialogue, home or abroad, would neither bring them their broadest possible fan base nor allow for interaction with the audience. The essential ingredient of interactivity was accessibility, and they wanted to be able to involve the audience, no matter who filled the seats on a given night.

What nobody could foresee was the survival of the fiveminute toy pantomime. Though it has undergone years of creative transmutation, today it acts as the group’s flagship sketch and prelude to a 90-minute show.

From 1985 until 1992, TOYS Theater toured only the western states of the USSR, in addition to the capital of Moscow. “Travel was restricted by the government,” remembers Golovushkin. The troupe had to submit an itinerary, which was reviewed for compliance with communist ideals. “We would perform only in front of audiences and in locations approved by the government.”

When the communist government fell, freedom came; however, that salvation also meant upheaval and ushered

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in a socio-economic climate unfamiliar to everybody.

Dependent on state support, the theater saw its finances turn upside down as the Cultural Center for the Deaf quickly lost much of its public funding.

“Those under the communist government were used to knowing where money would come from,” said Golovushkin. “Like a canary that grew to adulthood caged and cared for, freedom terrified it into a panic.”

TOYS Theater took a look at their new reality: they had to operate on a fraction of their budget and could no longer expect the state to cover their expenses. They needed paying customers. With changed goals, the thespians ventured beyond Russian borders to find new audiences.

OH BRAVE, CREATIVE NEW WORLD TOYS Theater’s first performance outside of Soviet reach was in neighboring Finland. In time they expanded to Germany, Holland, Poland and Norway, then farther—to North America, where they have toured for five years, and to Australia.

In retrospect, Golovushkin believes leaving home was one of the best things to happen to TOYS Theater. It took a fresh audience for them to realize they had been facing creative stagnation during their later years in Russia. “We have added sketches, changed many, kept what worked and thrown out what didn’t, and much of that has been influenced by the feedback and reaction of the audience,” says Golovushkin. “Our audience members, deaf or otherwise, have been wonderful. They come up to us and tell us they have come for the third or

fourth time. Sometimes we communicate in sign language, sometimes we just gesture with each other, but both sides get their point across. Their input means a lot and it’s why we’re still touring America—the audiences here have been unbelievable.”

Indeed, TOYS Theater came to New York in 2000, and to their surprise their calendar of U.S. bookings has stayed full. Schools and community-based organizations are their most frequent hosts; however, their tours have included performances at the National Association of the Deaf Biennial Conference, the John F. Kennedy Center for the Performing Arts, and the Russian Cultural Centre (considered the official home of Russian culture in the United States).

Golovushkin proudly recalls a Washington DC performance that was practically a homecoming. “We were

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invited to the Russian Embassy, and prior to taking the stage we all were excited. VIPs were everywhere, and the audience was in the hundreds. I took a quick glance at the faces: diplomats and businessmen of all levels.

They had serious, frozen expressions. Then the actors went on. I kept on watching the diplomats and businessmen, sitting with their wives and colleagues. Their expressions melted into something from awe to exhilaration. The performance ended and the audience quickly became formal again and gave a formal type of applause, but that was fine with me; I knew we had reached them. They had seen something new, and they would not forget it.”

Golovushkin recounts another memorable performance at a Pennsylvania school for students with special needs.

“When we arrived, we were warned that the students could be unruly, and many required personal, one-onone supervision,” remembers Golovushkin. “Then we started, and to the school staff’s amazement, something happened that not one of them had seen before. The entire student body went quiet. And they watched us with intense, unbroken interest for 90 minutes. We loved every moment of performing for them.”

On a visit to an inner-city elementary school in Boston, students showed support differently. Golovushkin tells, “Many were obviously underprivileged and probably were deprived of the arts. When we performed, they went wild and clapped and wanted in on everything.

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They stood up and waved their arms and laughed. The administrator came to us midway and asked if we could be less enthusiastic. We never dreamt we’d excite kids that much!”

Also on TOYS Theater’s resume are performances at the 2005 Deaflympics in Melbourne, Australia, and at Deaf Way II, a week-long arts celebration and symposium held the summer of 2002 in Washington DC. Both were international events with approximately 10,000 attendees.

TOYS Theater has traveled to an estimated 30 states and performs almost every weekend from early spring through late fall. In the time between, they return to Russia to visit family.

MORE THAN TOY CHARACTERS All four actors and Golovushkin himself come from different parts of western Russia. Filimonov, a carpentry wizard who is responsible for many of the props, was born in Volgograd (formerly Stalingrad) and went to the local school for the deaf. Solonitsky attended an oral school for the deaf near Moscow and oversees all the musical components. Goltsov helps construct props, and Romanovskaya is a talented seamstress, designing and creating the costumes; they went to the same school for the deaf in St. Petersburg and are the only ones who knew each other prior to TOYS Theater.

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Artistic director since 1994, Golovushkin is a photographer by profession and contributes to marketing endeavors when not occupied with logistics, bookkeeping and sales. Born approximately a thousand miles east of Moscow, he was educated at an oral school for the deaf, then studied pre-law at college. The call of the arts, though, was too great, and he spent eight years in photography, jumping at entrepreneurship with the dissolution of communism. For two years he struggled to run his own photography business, then found that the Cultural Center for the Deaf needed an executive director who could lead it in the post-communist era. Equipped with a unique set of qualifications—business management experience, a love for the arts and a basic legal education—he won the post, eventually leaving it in 2000 to manage TOYS Theater full-time when their U.S. tour kicked off.

The four actors and Golovushkin all communicate in Russian Sign Language, as does their producer, Marina Fanshteyn, who was born in Kiev but immigrated to New York City 15 years ago. Videoconferencing enables TOYS Theater to conduct business with the producer in sign language, even if the actors are in Cleveland one week and Sacramento the next.

In all their time in the states, the performers have remained true to their roots, conversing in Russian and taking turns cooking home dishes. But a great deal of adaptation has occurred.

For starters, their inventory of two suitcases apiece has grown into an extensive collection of props and costumes that don’t all fit in their seven-seat minivan. And after years of immersion it is no surprise they all have developed a manageable grasp of American Sign Language.

Because troop members also take care of the technical aspects of performing, TOYS Theater can avoid hiring crew, which keeps booking fees low. Friends and other connections support the troop by lending word-of-mouth advertising, providing lodging and advising the actors about American living.

Golovushkin hasn’t the faintest idea where the next few years will take TOYS Theater, but neither did he five years ago, or ten years back on the day he started. For that matter, neither did any of the actors the day

they auditioned. “A lot has changed since 1985,” he reminisces. “We may not get funding from the government anymore—we may not get much money at all here—but we love performing. That is what hasn’t changed. We are Russian. We are deaf. But wherever we go, to our audiences we are performers.”

by Glenn Lockhart www.toystheater.com Glenn Lockhart has contributed articles to ABILITY since 2003.

Deaf since birth, he communicates primarily through sign language.

He lives in Phoenix, Arizona, and works in business development for the telecommunications relay services unit of MCI.

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hat did you want to be when you were growing up? Almost every child at some point picks up a toy medical kit and aspires to become a nurse, physician, veterinarian, dentist or other health professional. A child who has a hearing loss, however, is unlikely to be encouraged to use a stethoscope or blood pressure cuff. For these children who have been less-than-motivated to pursue careers in health care, exposure to professionals with hearing loss can provide important inspiration. The Association of Medical Professionals with Hearing Loss proves by example that all people have the ability to pursue their dreams, regardless of their level of hearing.

The Association of Medical Professionals with Hearing Loss (AMPHL) is a nonprofit organization formed in 2000 by health care professionals who recognized the profound need to address issues surrounding people with hearing loss in health care occupations. AMPHL reaches out to professionals with health care degrees, such as physicians, veterinarians, dentists, nurses, physician assistants, technicians, audiologists and clinical psychologists, as well as students in these respective fields, providing resources and mentorship not found through other agencies. The association supplies information, promotes advocacy and creates a network for individuals with hearing loss interested in or working in those occupations.

In the last 10 years, an increasing number of individuals

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with hearing loss, whether congenital or acquired, have entered health care careers. These professionals and clinicians-in-training have become meticulous in their work and provide the utmost attention to their patients.

For example, nurses who cannot hear alarms develop systems to monitor their patients more closely and more frequently. Physicians and veterinarians who read lips or use sign language use memory techniques to compensate for the inability to simultaneously write in charts or type on the computer and listen to the patient during an interview. Nevertheless, there is still a need to educate instructors and other health care professionals about the many ways various practitioners successfully compensate for hearing loss.

When pursuing health care careers, students with hearing loss face unique challenges. They need access to assistive technologies both to obtain and assimilate the tremendous amount of information required of medical professionals, and to allow them to provide good patient care. AMPHL has become an important resource for professional and graduate schools in providing successful accommodations, including real-time captioning, sign language interpreters and assistive listening devices.

One of the most frequent misconceptions is that people who have hearing loss cannot use stethoscopes.

Although stethoscopes were designed for people who can hear, this obstacle has been overcome easily with

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help from stethoscope companies. AMPHL has been the backbone in this important change, and as a result there are several amplified stethoscopes on the market. Special earmolds sit over an in-the-canal hearing aid or plug into a behind-the-ear hearing aid. A health professional with very profound hearing loss can connect an electronic stethoscope to a personalized digital assistant (PDA), where a visual display software will convert the heart sounds to a visual graph of the sound waves called a phonocardiogram.

Another challenge for practitioners with hearing loss is the operating room; lipreading is impossible when everyone’s mouth is covered with a surgical mask.

Necessity is still the mother of invention, and several ingenious individuals have designed adaptive solutions for their specific institutions. One example for allowing medical students who are deaf to understand surgeries is to set up the operating room with a transcriptionist, a computer that connects to an overhead projector, and a screen; the transcriptionist types what is being said by key players, and the text is projected onto the screen, visible to the student without obstructing other medical staff. Additionally, AMPHL is working with an outside company to design see-through surgical masks to be used throughout the country.

Several AMPHL committees aid in the dissemination of material and help maintain the network. The advocacy committee is proactive with public policy and political

issues affecting health care professionals with hearing loss, providing a public voice to effect change. The secondary school/outreach committee strives to ensure children who have hearing loss become aware of the number of successful health care professionals who are hard of hearing, providing much-needed role models who can continue to guide them through training. AMPHL facilitates outreach to motivate students with hearing loss who dream of careers in health care professions. The most important resource AMPHL provides, however, is a list of dedicated professionals who are willing to share their personal stories and advice with others, addressing dilemmas from what is the best stethoscope to purchase? to should I disclose my hearing loss on my application? and how should I handle a panel interview?

Providing answers to these questions and many more, AMPHL hosts an annual conference as a part of its outreach program. The conference includes presentations about a variety of topics relevant to students and professionals with and without hearing loss, a stethoscope and assistive listening device display, and an opportunity for attendees to network and provide valuable input regarding AMPHL’s future projects and goals.

by Leah Algier, MD For conference information, visit www.amphl.org

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woman in slippers and a bathrobe enters her kitchen, prepared to enjoy the daily newspaper over breakfast. She pours herself a cup of coffee, sits down at her kitchen table and, ready to peruse the headlines, picks up the phone.

NFB-NEWSLINE, a free service developed and operated by the National Federation of the Blind, provides print news over the telephone for news consumers who have disabilities that make reading or holding a newspaper difficult. By dialing a local number, consumers can access more than 150 newspapers and magazines. Users of the service include people with a range of disabilities such as visual impairments, Parkinson’s disease, muscular

dystrophy, multiple sclerosis and dyslexia. The eligibility requirements to use NFB-NEWSLINE are the same as those for the National Library Service for the Blind and Physically Handicapped: documentation by a competent authority (such as a physician, optometrist, registered nurse, therapist, case worker, counselor, rehabilitation teacher, superintendent or professional librarian) of a visual problem or physical limitation, or documentation by a medical or osteopathic doctor of an organically based reading disability that prevents the reading of standard printed materials.

Patrick Leahy, special assistant for legislative affairs to the U.S. secretary of commerce, depends on daily

“I’ve been listening to headlines and stories not only from our local papers, but from The Wall Street Journal, the Boston Globe, the LA Times, USA Today, and the list goes on.” – Carol Nadeau

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newspapers. By the time he walks through his office door, he needs to be prepared to deal with all news and events that affect his department. As a consumer who is blind, Leahy began to subscribe to NFB-NEWSLINE in college but didn’t become a committed user until his job demanded it. Now, the daily paper is an intrinsic part of Leahy’s political career and personal life. “I look back with some regret that I didn’t begin reading the newspaper sooner,” he says.

When Jesse Hartle worked as an intern in Congressman Jack Kingston’s office, he was the primary contact for the Georgia constituency. Hartle, who is blind, needed access to the Georgia newspapers to stay up-to-date with happenings back in the district. He explains, “I’m from Louisiana, and I had to do a lot of research about what was going on in Georgia. The ability to use NFBNEWSLINE opened that up to me.”

NFB-NEWSLINE provides not only national papers and magazines via telephone, but also large local newspapers from 43 states, Washington DC and Canada. Subscribers can get the news the same time newspapers hit the stands, or they can reference the paper from the day before or the previous Sunday edition. NFBNEWSLINE users have complete control over what they choose to read and when and where they choose to read it. The service is especially well-suited to professionals like Leahy and Hartle, who have high expectations to meet and little time to meet them. The goal of NFBNEWSLINE is to make newspapers just as accessible to

people with disabilities as they are to people who can read the printed versions.

Each subscriber receives an identification number and a security code, which are necessary to access the service each day. Once inside the main phone system, readers use the keypad to select newspapers to peruse, specific topics to read about, or key words to search for. Readers can navigate forward or backward by a paragraph, a sentence or a word; they can slow down or speed up the voice on the other end of the line or choose a different voice entirely.

“I think I’ve changed my favorites three times already,” laughs Carol Nadeau, a subscriber of the service, “and I’ve been listening to headlines and stories not only from our local papers, but from The Wall Street Journal, the Boston Globe, the LA Times, USA Today, and the list goes on. I can call from home early in the morning to find out the hot issues for the day—or how the Red Sox did the night before when I was too tired to stay up and watch the game. I’ve even called NEWSLINE from my cell phone while riding on a bus!”

Hartle tells how better access to information made all the difference for him. “In college you need the ability to quickly find an article in a newspaper,” he remembers. “NFB-NEWSLINE cut down my study time immensely.” Now, as he advocates for accessibility rights for his peers who are blind and have other disabilities, Hartle believes access to newspapers is vital to his ABILITY 23

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Patrick Leahy, special assistant for legislative affairs to the U.S. secretary of commerce, depends on daily newspapers.

efforts. “There are things in the newspaper I want to take a chance at, and I need to take advantage of the opportunities presented to me.”

Both Hartle and Leahy know staying informed is more than just a good habit—it’s a vital part of their professional careers. Despite considerable advances made in accessible services and civil rights, more than 70 percent of Americans who are blind remain unemployed. The National Federation of the Blind believes that as NFBNEWSLINE becomes available to more people, it will play a key role in helping people who are blind and people with other disabilities secure jobs and pursue their chosen careers. “For me, the bottom line is the job,” says Leahy. “There’s so much potential to get many more people employed. I could count on one hand the number of people I’ve known on Capitol Hill who have low vision or are blind. Members of Congress want to [be able to hire people who have vision impairments], and NEWSLINE can help make that happen.”

Leahy doesn’t restrict his use of NFB-NEWSLINE to work-related topics; he also uses it to read about his favorite baseball team, the Washington Nationals. Likewise, Hartle, who despite his Louisiana origins follows southern California basketball, football and baseball, 24

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users have complete control over what they choose to read and when and where they choose to read it.

The service is especially well-suited to professionals... who have high expectations to meet and little time to meet them.

credits NFB-NEWSLINE with helping him expand his interests. He notes, “If you’re from a smaller town, you can scan one of those national newspapers. You never know what you’re going to find in there, but you at least have access to the information.” Leahy agrees, with one qualification: “If only you could get NEWSLINE to read the baseball box scores!”

People interested in the free NFB-NEWSLINE service can register over the telephone by calling the National Federation of the Blind or their state’s Library for the Blind and Physically Handicapped. Online enrollment is also available at the NFB website.

by Kimberly McCord National Federation of the Blind 866.504.7300 www.nfb.org National Library Service for the Blind and Physically Handicapped www.loc.gov/nls

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pine branch brushes your arm as the horse you sit atop rambles slowly along the mountain path. A lone bird calls quietly in the twilight, and you pull your horse off the path to join a group of campers for dinner over an open fire. Or perhaps you’d prefer clutching an oar as you help guide a rubber raft through water tumbling over rocks and cascading through gorges. Then again, maybe skiing is more your thing. Shooting behind you sprays of white powder, you descend the Rockies curve by curve, sun warming your back as you glide down the slopes.

Colorado offers a variety of vacation possibilities, from the chilling to the thrilling, and the state is working to ensure they can be enjoyed by all. The Colorado Division of Wildlife manages statewide accessible fishing areas, maintains a variety of fully accessible wildlife-watching sites, and facilitates special wildlife recreation accommodation permits for hunters with mobility-related disabilities. Colorado State Parks hosts an online listing of accessible camping and fishing sites and recreational activities for all its 40 state parks. The state parks system also offers free admission to any vehicle with disabled veteran license plates.

“Colorado is well-known for exceptional adaptive skiing and winter sports programs at many of our ski resorts,” said Stephen Szapor, chair of the Colorado Tourism Office Board. Just as impressive, he notes, are other activities that

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can be enjoyed year-round. “Summer is especially rich in accessible and adaptive adventure opportunities— from enjoying a scenic hike or rock climbing to visiting a museum exhibit or sitting by the lake and enjoying an alpine evening sunset.”

Because of Colorado’s breathtaking and varied scenery, an entire vacation could be spent on the trails. Castlewood Canyon State Park in central Colorado offers a 1.2-mile accessible path with beautiful overlooks into the canyon and creek below and views across the park landscape. Similarly, Colorado River State Park provides accessible fishing and camping, with several different views to take in. Rocky Mountain National Park includes a one-mile nature trail that wanders through elk and moose territory, and another .6-mile trail that loops around Bear Lake—although this trail is not as flat as others in Colorado parks.

Garden of the Gods Park in Colorado Springs hosts stunning mountain views, including a vista of 14,110foot Pike’s Peak visible from the visitor center, the trails and the campground. The campground is more than just a place to watch the view and fall asleep, however. It is the social hub of the park, hosting barbecues and entertainment all summer long.

Looking for something a bit more hands-on? Try fishing at Navajo State Park. The park’s 15,000 surface-acre reservoir, which extends 35 miles south into New Mexico, makes fishing a true highlight. Major renovations were recently completed at the park, and the campgrounds, picnic areas and visitor center are all accessible. A brand-new accessible fishing area is available as well, complete with a cabin.

Vega State Park is located at the west edge of Grand Mesa National Forest. At a mild 8,000 feet in altitude,

this park keeps vacationers coming back every year. The Early Settlers and Pioneer campsites, the visitor center and all cabins are accessible for people with disabilities, and an accessible fishing pier is located at Oak Point.

Wilderness on Wheels has built a model wilderness access facility 60 miles southwest of Denver. A mile-long, eight-footwide boardwalk rises through the forest to a 12,300-foot mountain top. Vacationers can enjoy a summer cookout with elevated grills or a picnic with tables that are accessible to everyone. Campsites offer decks raised to the height of a wheelchair seat. The trail is free, but reservations are required.

If you want to get in the water yourself, rather than pull things out of it, you have options. Sign up for sea kayaking clinics in the Blue Mesa Reservoir, the largest body of water in Colorado. You will learn the ins and outs of kayaking using single and tandem kayaks.

Explore some of the inlets and sights around the lake.

Clinics provide instruction, equipment and lunch.

If you are seeking a relaxing experience along the river, the Adaptive Sports Center’s Dominguez Canyon River Trip might be just the right fit. Colorado residents call this deep red sandstone canyon the eighth wonder of the world. Spend one or two nights along the water in the peaceful canyon. During the day you can work on your canoe skills in the soft-flowing river, or just settle back and float as you bask in the sun. This is a trip to rejuvenate and take in the scenery. Enjoy the stars at night and the gourmet meals prepared by the Adaptive Sports

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Valley lakes and rivers or as adventurous as mountain biking. Vacationers can use the center’s three-wheeled adaptive bikes and upright handcycles. Four-wheeled mountain bikes are available for a downhill ride, with a chairlift or van bringing riders back to the top of the hill.

This year the Adaptive Sports Center has initiated a summer Women’s Retreat and an autumn Gentlemen’s Mountain Retreat in the Elk Mountains. The events explore how to live a healthy lifestyle, hosting workshops with massage therapists and nutritionists. These retreats keep the adventurous soul energized, offering a ropes course at 10,000 feet, biking and whitewater rafting; they are weekends that showcase what Colorado has to offer vacationers.

Center staff. Everything is provided for you, including equipment, guiding, permits, food and instruction.

Whitewater rafting is a popular choice at the National Sports Center for the Disabled (NSCD), based in Winter Park and Denver. The center offers both half-day and full-day trips along the Colorado River and is planning new programs for Colorado’s Front Range rivers. If you are looking for a longer trip on the rapids, look to the 4Day Raft Adventure through the Adaptive Sports Association, based in Durango. Spend four days and three nights on the Gunnison River experiencing mostly class I and II rapids, with a few small IIIs that will provide an experience to talk about for years to come.

The NSCD is a valuable place to visit, even for landlubbers. It is one of the largest outdoor therapeutic recreation agencies in the world, with a trained staff, an adaptive equipment lab and a repertoire of summer and winter activities for everyone, from small families to large groups. In addition to the water activities, the NSCD offers horseback riding, mountain biking, golf, rock climbing, skiing and snowshoeing.

Another group offering organized adventures is Breckenridge Outdoor Experience Center, recently honored as a finalist in Colorado’s El Pomar Foundation Award for Excellence program. Breckenridge provides individuals of all abilities instruction year-round in areas such as rafting, canoeing, ropes courses, team-building, hiking, skiing, natural history and ethics. The center also conducts children’s camps during July and a ski trip in December for adults with traumatic brain injuries and their families.

In Crested Butte, the Adaptive Sports Center assists as much or as little as vacationers want. The staff can coordinate flights, lodging and meals, or simply provide guides and instruction as desired. Scholarships are available for individuals or groups who would not otherwise be able to afford a vacation with adaptive recreation.

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Of course, not all Colorado vacations are spent on horseback, raft or skis. Colorado state parks also provide plenty of entertainment accessible by automobile.

The Dinosaur Diamond Prehistoric Highway is a route lined with excavating grounds where paleontologists still dig for and preserve dinosaur bones. Museums on the route present the fully-constructed skeletons.

The San Juan Skyway is a tour through a different history: the Old West. Western towns such as Durango, Silverton, Telluride and Ouray are pit stops along the byway, which curves in and out of five million acres of undisturbed national forest and is surrounded by 14,000-foot peaks.

In Denver, the attractions take on a more urban feel.

The Denver Botanical Gardens, which houses more than 32,000 flowers and plants, and the Denver Museum of Nature and Science both echo the natural beauty of the state parks but house the scenery in fully accessible man-made buildings. The Museum of Nature and Science’s IMAX Theater provides wheelchair seating, a fully accessible elevator, closed captioning using the state-of-the-art Rear Window system, and assistive listening devices for amplification and descriptive narrative. Likewise, the museum’s Gates Planetarium is

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fully accessible, with wheelchair seating, audio transcripts and assistive listening devices.

The Denver Art Museum is also accessible and has several new exhibits on display. The New Classics exposition focuses on American Indian artists, and No Boundaries: Fiber + Art presents a collection from artists known primarily for their work with textiles. With fun and family-oriented

activities scheduled throughout the year, the museum offers something for everyone.

There are few places like Colorado, where such a wealth of activities can be found for people with varying ability levels. With more than 300 days of sunshine a year, the weather is perfect for enjoying activities in every season.

So pack your bags and visit Colorado. A new adventure awaits you.

www.colorado.com

Photos by Tom Stillo, Eric Wunrow, Byron Hetzler and J.C. Leacock ABILITY 31

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recipes provided by The American Institute for Cancer Research

DIETARY CHOICES PLAY AN IMPORTANT ROLE IN REDUCING CANCER RISK Thinking about cancer is something most of us would rather avoid, but today we know that paying more attention to our cancer risk is something that can yield real dividends. Researchers tell us the majority of cancers we face are preventable窶馬ot through new drugs or medical breakthroughs, but through simple lifestyle choices.

The foods you choose each day are one of the most important factors in protecting you and your family from cancer. Most Americans eat a diet that is far too high in fat and calories. Even more important is what the average U.S. diet lacks: a variety of vegetables, fruits, beans and other plant-based foods.

SPICED NUTS Ingredients: Olive or canola oil spray 1/2 cup whole raw almonds 3/4 cup halved raw walnuts 3/4 tsp. ground cumin 1/2 tsp. paprika 1/2 tsp. garlic powder 1/8 tsp. salt Cayenne pepper, to taste (optional)

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Instructions: 1. Preheat oven to 350 degrees. Place nuts in small bowl. Spray lightly with oil and toss to coat. Add spices and toss to blend thoroughly.

2. Spread nuts on baking sheet. Roast until fragrant, about 15 minutes. Serve warm or at room temperature.

Store in airtight container. Makes 5 servings.

Nutritional Information: Per 1/4 cup serving: 181 calories, 18 g total fat (1 g saturated fat), 4 g carbohydrate, 5 g protein, 1 g dietary fiber, 58 mg sodium.

PUMPKIN-ORANGE MUFFINS Ingredients: Canola oil spray 1 egg 1/2 cup skim milk 1/2 cup canned pumpkin 1/4 cup canola oil 1 tsp. dried grated orange zest 1 1/2 cups unbleached flour 1/2 cup sugar 1 tsp. baking powder 1 tsp. cinnamon

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3/4 tsp. nutmeg 1/4 tsp. salt Instructions: 1. Preheat oven to 375 degrees.

Spray muffin tin lightly with spray oil.

2. In a medium bowl, beat egg, milk, pumpkin, oil and grated orange zest, mixing well.

3. In a separate bowl, mix together dry ingredients. Mix into pumpkin mixture.

4. Spoon batter into greased muffin tin, filling each 1/2 to 2/3 full, and bake until pick inserted in middle of muffin comes out clean, about 20 to 25 minutes.

2 tsp. extra virgin olive oil Salt and freshly ground black pepper to taste 3 Tbsp. toasted pumpkin seeds, coarsely chopped Instructions: 1. Place bulgur in large bowl. Add water. Let stand until bulgur is al dente, about 20 minutes. Drain well in strainer, pressing gently on bulgur to remove most of the moisture.

Transfer bulgur to dry serving bowl.

2. Add celery, bell pepper, chickpeas or cheese if desired, apple, parsley and raisins. Stir to combine.

5. Remove from oven and set on wire rack to cool, about 5-10 minutes. Remove muffins and allow to cool completely on rack.

3.Add lemon juice and oil. Toss with fork to coat well. Season with salt and pepper, if desired. Just before serving, toss with pumpkin seeds.

Makes 4 servings.

6. Serve immediately or store in plastic bag or other sealed container, but do not refrigerate. (If making more than one batch, extras can be frozen.) Makes 9 muffins.

Nutritional Information: Per serving: 215 calories, 4 g. total fat (<1 g. saturated fat), 44 g. carboydrates, 6 g. protein, 9 g. dietary fiber, 28 mg. sodium.

Nutritional Information: Per serving: 191 calories, 7 g. fat (less than 1 g. saturated fat), 29 g. carbohydrate, 4 g. protein, 1 g. dietary fiber, 134 mg. sodium.

BARLEY, TURKEY AND BUTTERNUT SQUASH CASSEROLE

BULGUR SALAD WITH RAISINS AND PUMPKIN SEEDS Ingredients: 1 cup bulgur wheat 2 cups boiling water 1 large celery rib, finely chopped 1 medium green bell pepper, finely chopped 1 cup canned chickpeas, rinsed and drained, or 1/2 cup crumbled feta cheese (optional) 1/2 Granny Smith apple, peeled and finely chopped 1 cup loosely packed parsley, chopped 1/3 cup raisins Juice of 1 small lemon

Ingredients: Cooking spray 2 small butternut squash 2 tsp. olive oil 1 green bell pepper, seeded and diced 1/2 cup minced onion 1 tsp. dried sage Freshly ground black pepper, to taste 2 cups fat-free, reduced sodium chicken broth 3/4 cup quick-cooking barley* 1/2 lb. cooked turkey breast, cubed or diced 1/2 cup crumbled feta cheese Instructions: 1. Preheat oven to 350 degrees. Coat a 4-quart baking dish with cooking spray.

2. In a large pot of rapidly boiling water, boil squash halves 5 minutes or until not quite tender. Drain.

When cool enough to handle, scoop flesh from each half and dice. Set aside.

3. In a large saucepan, heat oil over medium heat. Add green pepper, onion and diced squash. Sauté 3 minutes.

4. Add sage and pepper and stir to coat. Add broth and bring to a boil.

Add barley and return to boil.

5. Reduce heat to low, cover and cook 10 minutes, until barley is tender and liquid is absorbed. Mix in diced turkey.

6. Transfer mixture to prepared baking dish and top with feta cheese.

7. Bake, uncovered, 30 minutes, or until cheese is golden. Makes 6 servings. *Most supermarkets and health food stores carry quick-cooking barley.

Nutritional Information: Per serving: 275 calories, 5 g. total fat (2 g. saturated fat), 42 g. carbohydrate, 18 g. protein, 10 g. dietary fiber, 368 mg. sodium.

The American Institute for Cancer Research (AICR) is the nation’s third largest cancer charity, focusing exclusively on the link between diet and cancer. The Institute provides a wide range of consumer education programs that help millions of Americans learn to make dietary changes for lower cancer risk. AICR also supports innovative research in cancer prevention and treatment at universities, hospitals and research centers across the U.S. The Institute has provided more than $65 million in funding for research in diet, nutrition and cancer. AICR’s Web address is www.aicr.org

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hroughout history, passion has lead people to do remarkable things and achieve extraordinary heights. An unfettered passion for equality and freedom brought an end to slavery; doctors passionate to find cures for Alzheimer’s disease, Parkinson’s disease and multiple sclerosis teeter on the brink of medical breakthroughs. And behind every great movement, there is a passionate voice—one voice that through persistence, diligence and fortitude becomes a thousand voices speaking for ten thousand more. If Fran Drescher has her way, her voice will be heard by millions and will save countless lives.

Entering into the second season of her new hit comedy Living with Fran, Drescher is finding herself in a familiar position as star and executive producer. While Living’s Fran strikes a strong resemblance to the quick-witted Fran of Drescher’s previous hit, The Nanny, Drescher’s off-screen persona has in some ways metamorphized. After persevering through a bout with cancer, Drescher has developed a newfound sense of purpose as an advocate for women’s gynecologic health care education.

ABILITY Magazine’s Chet Cooper and Gillian Friedman, MD, recently joined Drescher for lunch at a small Malibu eatery. While Drescher does not easily suppress the executive producer in her—she was quick to find the most temperate table for the unusually warm day—she remains a down-to-earth woman who pleasantly accepted the type of fan recognition that comes with being a Hollywood veteran of more than 25 years. So engrossed in sharing her story that she hardly had time to finish her meal, Drescher discussed her new show, her own experience with endometrial cancer, and the advocacy that has truly become her passion.

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Chet Cooper: You had quite a success with The Nanny.

How long did the show run?

Fran Drescher: Six seasons.

Cooper: You were the original TV nanny; what do you think of the recent genre of nanny-related reality shows such as Supernanny and Nanny 911?

Drescher: I’m not really into reality shows; personally, I like a scripted show. I’m aware of the reality series, but I’m not a regular viewer.

Cooper: I thought you’d say, “I can take those nannies any day; bring ’em on!”

Drescher: (laughs) Gillian Friedman, MD: It’s exciting to see that Living with Fran has been picked up for a second season. Tell us about the show.

Drescher: Living with Fran is an older woman/younger man romantic comedy. On the show, I have two kids from a former marriage. My son is actually closer in age to my boyfriend than I am, and I have a teenage daughter who is beginning to go through an incorrigible stage.

My ex-husband is played by Charles Shaughnessy, who played [my employer-turned-husband] Mr. Sheffield on The Nanny.

Friedman: How much of the show is based on your

own life experiences?

Drescher: Well, for four years I was seriously involved with a man who was 16 years my junior.

Cooper: And he got too old for you?

Drescher: (laughs) It ran its course. Sometimes people come into your life for a season and other times for a lifetime. I believe he came into my life for a reason: to get me through my bout with cancer. Our relationship lasted for two years after that, and then it was time to move on. But there was a lot that came out of that and certainly a lot to draw on creatively.

Friedman: Speaking of your bout with cancer, you undertook a great deal of advocacy when your book Cancer Schmancer came out in 2002. What are some of the things you’re doing now?

Drescher: I’m very active. Being a famous survivor has given a purpose to my life that I really didn’t have before. Although I was always supportive of charities, this is different because I see a real need to improve women’s gynecologic health care. I wrote Cancer Schmancer so that what happened to me wouldn’t happen to other people—it took me two years and eight doctors to get a proper diagnosis. When I went on my book tour, I realized that misdiagnosis happens to tens of thousands of women and men. The way people are diagnosed, the tests offered, the knowledge patients have and the control they take of their bodies all need to be improved. I feel like a whistle-blower. I got famous, I got cancer and I lived to talk about it.

Friedman: How do you think things can be improved?

Drescher: I’m presently trying to push a bill through in Washington that was called Johanna’s Law. Cooper: Was? Left: With her dad Morty on the set of The Nanny. Below: In London with Charles Shaughnessy, who played Mr. Sheffield on The Nanny

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Drescher: It’s now been re-named by the Senate as The Gynecologic Cancer Education and Awareness Act or Johanna’s Law, which is obviously clearer for members of the House and Senate to take a position on. I’m very excited about the progress it’s making, and I’m keeping my fingers crossed that it will in fact be turned into law.

Friedman: What are some of the most important provisions of the bill?

Drescher: It’s an education-based bill targeted at women and their physicians. One goal is to teach what the early warning symptoms of gynecologic cancer are and what tests are available, so women can detect cancer when it’s most curable. That’s the first step; if women know how to recognize the earliest warning symptoms, they have a much better fighting chance. Unfortunately, the early symptoms tend to mimic far more benign illnesses, and the medical community is pressured by big-business insurance companies to use the least expensive diagnostic testing. So most doctors ascribe to the philosophy, “If you hear hooves galloping, don’t look for a zebra. It’s probably a horse.” But that kind of thinking is killing us. Eighty percent of women with ovarian cancer will find out in the late stages, and 70 percent of them will die.

Friedman: The problems of early detection are a significant dilemma.

Drescher: And many, many of those late-stage cases were misdiagnosed initially as irritable bowel syndrome because the symptoms are similar in the earliest stages. Cancer screening tests have to become more a part of basic health care. Plus I am a big believer in the

transvaginal ultrasound, which is the equivalent of putting a pair of eyes on the end of a doctor’s fingertips.

I cannot believe that the uterus and the ovaries are left to be diagnosed blindly with a manual pelvic exam. But insurance companies are afraid that if we’re offered ultrasound as part of our basic gynecologic health care, it’s going to open a Pandora’s box. It’s a diagnostic tool—not a cancer screening tool—and women get so many problems that could be benign, it would create a domino effect of subsequent testing to see what each problem is. To my mind, it allows a patient and her doctor to see any abnormality, any thickening, and watch to see if it’s growing.

Going to the gynecologist and simply getting a Pap test—and often the wrong Pap test, because everybody should be getting a Pap with DNA testing, not the regular Pap that’s presently offered—is the equivalent of going to the dentist and having him look at only onethird of your teeth. We have to start questioning the care we’re getting. Right now I’m working to start a new organization called WOMB: Women Organized for Medical Breakthroughs. I am on a rampage, really, to start a movement in this country to change the thinking, to change legislation, to change insurance policies and to get unions to demand for their women different types of health insurance policies. I hope to get a group of female CEOs to take an interest and write a new kind of policy with a health insurance company that’s willing to take this first step. I want to speak at colleges and high schools across the country. A hundred years ago women started a suffrage movement to get the right to vote, and now we have to start a movement to save our lives. It’s that serious and that necessary.

Friedman: An important point you raised is that if a woman is having symptoms, the testing she needs is not screening, but rather diagnostic testing. Screening, by definition, is testing done in people with no signs of illness, to

Left: Gazing into the eyes of Living with Fran co-star Ryan McPartlin Below: Confronting her television son Josh, played by Ben Feldman

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identify treatable conditions early. But once someone has symptoms, it’s a completely different ballgame— symptoms put the person in a higher risk group for serious illness, and it is important for her to pursue a different level of testing for diagnostic purposes. However, a doctor is never going to be able to ask about every symptom. Women have to know themselves what the early symptoms of gynecologic cancers are so they can alert their doctors and ask for testing.

Drescher: Exactly. If a woman has staining between her periods, that’s it! Endometrial biopsy. Now, it might end up that you’re peri-menopausal, which is what I was misdiagnosed as being for two years. I was placed on four different hormone replacement therapies, and all the while I had cancer and the hormones were exacerbating that cancer. I want to have a tool available to women—a cheat sheet, a bookmark, anything that describes symptoms. You can’t keep your head in the sand because the day will come when you can’t deny what’s happening to you. You feel it. You know. If I knew then what I know now, when doctor number one said I was too young for a D&C [dilatation and curettage, a scraping of the lining of the uterus] I would have said, “Wait a minute. Let’s do the D&C. Let’s eliminate the possibility that I have uterine cancer before we start going down the road of hormone replacement therapy.”

It’s the zebra and the horse… let’s rule out the zebra first, because it’s my life.

When a doctor calls and tells you that you have cancer, at the end of the day he goes home and eats dinner with his family, but you go home and eat your heart out with yours. Ultimately, who’s got the greater responsibility for your health? You do. You have much more to lose. It’s

vitally important for us to start thinking that way as patients and become greater partners with our physicians. We put more energy into the buying, selling and repairing of our automobiles than we do into our own bodies. People become infantile, they become scared, they turn their doctors into gods. All wrong. That’s oldschool, twentieth century nonsense. Now it’s the twentyfirst century and we’ve got to know what we’re doing.

Friedman: Especially because doctors don’t always agree with each other. You said you went to eight different doctors. The first person you see may not hear everything, or your condition may change. Sometimes you need to see more than one professional to get the complete picture.

Drescher: I always tell my friends, “Whatever they tell you, get a second opinion.” How can you just go to one person when you’re dealing with your life? There are so many doctors out there. The place you bring your automobile to fill it up with gas may not be the place you want to do delicate engine work. And the doctor you’ve been seeing for years, even a gynecologist, may not be the best diagnostician.

Cooper: You said you had a sense there was something else going on. At what point did it become clear to you that something was being missed?

Drescher: I definitely didn’t feel right. Something was wrong. I was getting more and more odd symptoms, and I did not feel that I was peri-menopausal. I wasn’t having hot flashes, and I had very strong, you know, actual desire. But I didn’t feel well after having sex, and I didn’t think that going through early menopause or going through the pre-stages of menopause would cause that.

And then I was getting terrible leg pain. Gilda Radner talked about leg pain in her book about her experience

Left: On-the-set dance party with Misti Traya, who plays daughter Allison on Living with Fran. Sharing a beer with her character’s young boyfriend

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with cancer, and I brought that up to every single doctor.

Doctor number eight said, in no uncertain terms, “Fran, you do not have cancer,” and put me on a birth control pill. I started bleeding 24/7. I called her and she said, “Okay, go off it.” Then she said, “I probably just put you on too low a dose.” I thought, Too low a dose? It’s making me worse! How could too low a dose make me worse?

Friedman: In the end, how did you finally come to be tested for cancer?

Drescher: Doctor number eight finally said, “Just as a precaution, we’ll do an endometrial biopsy in the office.” So after two years, I was finally in her office getting the biopsy, and all the while she was talking to me about going to a fertility center. She was so convinced that I had five minutes left of fertility, and if my boyfriend and I wanted to procreate, we had to think about doing it right then. She was in complete denial that I could possibly have uterine cancer. They all were. I slipped through the crack every step of the way. Twentyfive percent of women with uterine cancer are young and thin and don’t meet the typical profile.

Friedman: We had a saying in medical school for patients who didn’t meet the usual profile for their conditions: That patient didn’t read the textbook about this illness.

Drescher: (laughs) Exactly. Other people I’ve talked to who have had cancer have said the same thing—that early on something was weird. My stool changed, my coping mechanisms were different, my face started to break out.

I also realized that I had probably always had luteal phase defect [a shortening of the second part of the menstrual cycle—the luteal phase—usually caused by low progesterone levels], but since I never tried to have a baby, I was never diagnosed with that. Yet, I had always had very short menstrual cycles—19 days, sometimes 17 days. I’d ask doctors and they’d say, “Has it always been such a short cycle?” “Yes.” “Well, normal is what is normal for you.” But you know what?

That’s not true. I always ran low on progesterone. Had I been diagnosed with that in an earlier stage, I might not have had the uterine cancer, which I believe came about because I had unopposed estrogen.

Friedman: Some studies have suggested that relationship.

Cooper: Who was Johanna?

Drescher: Johanna was a woman who died of ovarian cancer. When she went to the doctor she was misdiagnosed with irritable bowel syndrome, even though her mother had died of ovarian cancer.

Friedman: So ovarian cancer should have immediately been considered, because she was in a very high risk group.

Drescher: She was a very beautiful, vital woman in her very early 40s who is now dead. Her sister couldn’t let her die in vain, so she initiated the law and got Congress members Sander Levin, a Democrat from Michigan, and Kay Granger, a Republican from Texas, to back the bill.

I heard about it through e-mails. Then my oncologist, Beth Karlan, who is president of the Society for Gynecologic Oncologists, began promoting the bill. When I went for one of my exams, Dr. Karlan and I started talking and I said, “When you go to Washington, don’t go without me, because I know a lot of people on Capitol Hill and my celebrity opens a lot of doors.” I ended up getting Senator Arlen Specter, the Republican who is the head of the Appropriations Committee, to set up a hearing, which I spoke at. He agreed to appropriate monies whether the bill gets passed or not. He got Senator Harkin to cosign, and I got Senators Hillary Clinton, Barbara Boxer and Barak Obama.

We have some high-profile people who are going to try to push it through, like a little A-team.

Friedman: Sounds like a big A-team.

Drescher: Except it’s heavy with Democrats, and we need greater bipartisan support.

Cooper: ABILITY has been fortunate to receive bipartisan support, and we’ve been working with a number of senators and congressmen on The Hill as well. As a matter of fact, Senator Harkin has been writing a regular column for ABILITY. Drescher: He’s a lovely man. So is Senator Specter.

He’s battling cancer himself, and he also feels he got a late diagnosis. He said, “I was complaining to my doctor 10 weeks earlier. I should have gotten the CT scan done then.”

Cooper: Like everyone else, politicians bring a deeper level of understanding to an issue when it has affected them personally.

Drescher: What you don’t know will kill you.

Cooper: Going back to Johanna’s Law, is part of the legislation also funding research?

Drescher: Not this particular bill. But I didn’t initiate the bill; Johanna’s sister did.

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Drescher: Specter has done many things with his career, but signing on to help women’s health care is going to be his finest hour. I sent him a letter that said, “Get well because there’s much to be done.”

Friedman: Changing course a little, I’d like to share

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some of the trivia that came up as we were preparing to meet with you today. Did you know you’re on the National Rifle Association’s hit list?

Friedman: Was it more traumatic to receive the cancer diagnosis while you were still recovering from the trauma of a violent crime? I can’t even imagine that.

Drescher: That’s funny. I don’t think I’ve ever taken a position about guns.

Drescher: I didn’t really deal with the rape at the time it happened. I was still in my Superwoman mode. I came face-to-face with it almost 10 years later when The Nanny was on the air; one of those exploitive magazine shows did a piece on it and actually went to the prison and tried to talk to my assailant. All sorts of people started calling my parents, concerned, because the show presented it as though it had recently happened.

Friedman: If you Google Fran Drescher, there is an NRA site about Second Amendment rights, and they have listed a bunch of anti-gun celebrities. Your name is only one in a long list.

Drescher: I’m surprised because it’s not something I’ve ever really taken a strong position on, being that I was a victim of a violent crime.

Cooper: I expect that’s where it’s coming from.

Drescher: I’m actually more conservative than most people would expect. My assailant was on parole, and until very recently I was pro-capital punishment. I don’t have a problem with people having weapons.

Cooper: Are you packing heat right now? Should we be a little nicer?

I was in therapy at the time and suddenly I experienced what I didn’t allow myself to experience the first time.

At the time the rape happened, I was anonymous. Later, I became famous. I didn’t think the rapist would have made the connection, but they made it for him. It made me feel exposed and vulnerable and like a target, even though he’s in jail. Now I’m connected to him and whoever he knows in his world—that freaked me out and brought up all the fears. Thank God I was in therapy at the time so I could process the experience with a trained ear to guide me and help me digest what had happened.

Friedman: How did you ultimately put it in perspective?

Drescher: (laughs) No, no. I think the right to bear arms in this country is something that protects us from the types of oppressive governments that exist in many parts of the world.

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Drescher: That’s a good question. I live defensively, and I do have a certain amount of control in my life. I can’t let the frightened inner child in me take over. Being

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famous is a double-edged sword—I can be a target, but I am also surrounded by people. I travel in posses. I have bodyguards when I need them. I live with very sophisticated security in very good neighborhoods—not that that means anything, but it gives me a certain sense of security, even if it’s false. I was completely anonymous and I became a victim of a violent crime, so it can happen to any of us.

After the rape I was still seeing myself as Ms. Wonder Woman. Having cancer presented the opportunity to ask for help in a way that I didn’t when I was raped. There are so many silver linings that came out of my experience. I’m much better for it. I’m not glad I had cancer, I don’t wish it on anyone, but I am much better for it. All my relationships have deepened because now I accept the fact that I’m as vulnerable a human as you are and…

Cooper: Gillian’s still super-human.

Drescher: (laughs) I had always been the caregiver, and I realized it’s very selfish of me to be comfortable only giving and not taking. I never gave anybody the opportunity to feel good about giving to me.

Cooper: Here, let me give you this glass of water.

Drescher: (laughs) You’re quite the comedian—you’re not trying to audition for my show, are you? (laughs) Cooper: (laughs) As they say, humor is the best medicine.

Drescher: True!

Friedman: How did having cancer affect your family relationships?

Drescher: My relationship with my ex-husband changed for the better. When he was told that I had cancer, he Counterclockwise from bottom left: Hugging parents Morty and Sylvia; a Fran sandwich with grandparents; meeting with manager Elaine Rich and Senator Hillary Clinton; standing beside Jamie Kennedy, co-executive producer of Living with Fran

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burst into tears. All of the anger melted away and all that was left was the love. My parents, I couldn’t even call them after I was raped. I told them they didn’t need to come out, I was fine. But when I got the call that I had cancer, I said to myself, “I’ve got to call my parents. I have to pick up that phone and tell my mother I have cancer.” It was a huge turning point for me in my own psychological growth. Much to my amazement, she didn’t become hysterical as I had thought she would. She said, “Okay, let’s not panic. What’s the next step? What do the doctors say we need to do? Daddy and I, we’ll come to you. We want to be there.”

Cooper: You had to let go and let someone else care for you for a change.

Drescher: The challenge comes when you’re broadsided one Wednesday afternoon and your life changes forever. You’ve made plans for what you think your future is going to be, but you have to let go of the plan. You have to play the hand you’ve been dealt.

That is my greatest lesson from this experience: whatever I do, wherever I go, I know in my head I may end up taking an

unexpected sharp left and I have to let go of where I was heading.

Friedman: It requires a leap of faith for some people to approach change with the assumption that things are still going to work out.

Drescher: All the Zen masters live in the moment, because it is all we have; eventually, I was able to wrap my mind around that. For a while after the surgery, I couldn’t accept the permanence. I couldn’t believe that in this life I was never going to experience having a baby. I can adopt, I can raise a child as mine, but my choice was taken away. And I felt further enraged because I felt victimized by the medical community.

Cooper: How did you get past the feelings of anger and victimization?

Drescher: I was told by a few people, “You’re going to have to let this go because it’s only going to make you bitter, and that’s not good for healing.” People I trust, I listen to. Also, I’m not going to give birth to children, but I gave birth to a book, and people tell me all the time that it saved them—saved them psychologically, saved their lives because they went in and insisted on getting a test the doctor didn’t want to give them. It made a difference in their recovery.

Friedman: I’ve read that when you evaluated some of the treatments for your cancer, you made the fairly unorthodox decision not to have radiation therapy. Did you get any resistance from your doctors about your choice?

photos by Craig T. Mathew/Mathew Imaging

Drescher: Not really. It was left up to me because I was still in stage I. Initially my oncologist said she and the pathologist had collectively decided that with a uterine cancer patient in stage I who’d had a radical hysterectomy, they didn’t see any reason to do radiation. Then I went back for my first two-week checkup after I was out of the hospital, and she had changed her mind after talking to a colleague in Wisconsin. Wisconsin has the highest rate of uterine cancer in the country because it has the highest rate of obesity.

Obesity creates estrogen, and estrogen contributes to uterine cancer.

The Wisconsin doctor said, “One out 44

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Drescher and ABILITY Magazine’s Chet Cooper share a few laughs

of ten of my patients needs radiotherapy, but I zap them all with it.” Although I already had a 95 percent chance of non-recurrence, my doctor suggested the radiotherapy would probably push it up to 98 or even 99 percent. She said, “If it were me, I would do it.”

And I felt, Well, it’s not you, it’s me, and I’ve got to do my own research.

So I hit the Internet and got all the information I could about this procedure. I learned that for a lot of women, radiation deformed their vaginal canals and they had constant dryness, bleeding and shrinking. I thought to myself, This is all I have left of me. Then I started calling the doctors who are leaders in this field. I called someone at Sloan Kettering, someone at M. D. Anderson and the doctor from Wisconsin who talked to my doctor in the first place. He explained that the problem with his patients was that most of them are farmers who live 300 miles from a hospital, and they are not going to come back every three months to get a checkup. He said he zaps all of them, not for the 9 out of 10 who wouldn’t need it, but for the 1 out of 10 who would have a recurrence. This is very unfortunate for the 9 out of 10 who don’t need it. A lot of women on the different websites I logged onto said they never really felt they recovered because they had to deal with the stunning side effects of the radiation.

Then I also learned that the techniques for doing radiation vary not only from state to state and city to city, but also hospital to hospital, and for no real reason. The dose of radiation, how often it’s given, how much time the treatment is stretched over—it all varies. Some hospitals have very advanced equipment and others kind of make do with what they have. After doing a great deal of research, I decided that if I ever decided to have radiation, I would do it at M. D. Anderson, which has

very state-of-the-art equipment. I’m now involved there as a patient advisor, and I wrote a letter when they applied for—and then received—the largest grant ever for uterine cancer research.

Friedman: It sounds as though you investigated very thoroughly before deciding that radiation was not the right option for you.

Drescher: I gave the decision a lot of thought, because whatever choice you make, you can’t look back. But ultimately I thought to myself, the odds of my dying are higher just driving on the freeway than taking my 95 percent chance of non-recurrence. I was in stage I; I had a slowgrowing, non-invasive cancer; I had the radical hysterectomy; I had the advanced staging; my odds of non-recurrence were already excellent. If somebody had told me, God forbid, that I had a stage IV cancer, and that even with surgery I had maybe a 20 percent chance to live, then I’d do whatever I could do. But mine was a different situation. I made, I think, an educated decision. I feel it was the right one. I still feel it was the right one for me.

Friedman: Certainly, after all the research you did. It can be confusing for some people, though, to figure out whether the information they’re seeing is coming from a qualified authority.

Drescher: Yes, you can go nuts with all the different research findings. If you see a study that enrolled only 15 people, then you have to move on. If it’s a study that had 1,500 people and spanned more than five years, you can pay attention to that. You can talk to that doctor.

Cooper: Have you done anything to celebrate your continued good health since your recovery? What are you doing for fun these days? continued on page 59 ABILITY 45

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A

ccording to the American Cancer Society, each year almost 650,000 American women find out they have cancer; of this group, roughly 84,000 have gynecologic cancers, including cancers of the ovary, endometrium (lining of the uterus), cervix (entrance to the uterus), fallopian tubes, vagina and vulva (external genitalia).

The term uterine cancer generally refers to endometrial cancer, although a small number of women develop cancers of other types of uterine cells, such as muscle cells. Endometrial cancer is the fourth most common cancer in women and the most common gynecologic cancer. It develops when the cells that line the uterus become abnormal and grow uncontrollably, eventually invading surrounding tissue and spreading throughout the body. Forty thousand women in the U.S. are diagnosed with endometrial cancer annually, and the disease is responsible for approximately 6,600 deaths each year.

Chances of recovery are greater than 90 percent if the cancer is diagnosed and treated early, but that rate falls precipitously in later stages of illness.

WHO IS AT RISK FOR ENDOMETRIAL CANCER? While endometrial cancer can occur in women of any age, in most cases it develops in women who have already gone through menopause. It occurs more frequently in Caucasian women than in African-American, Latina, American Indian or Asian/Pacific Islander women; nevertheless, mortality rates are almost twice as high for African-American women as for women of other races.

Although the exact cause of endometrial cancer is not known, several factors have been shown statistically to increase the risk for its development. Most are thought to operate through greater exposure to the reproductive hormone estrogen, either naturally or from outside sources, particularly when it is not balanced with the hormone progesterone. There are several ways women can be exposed to higher amounts of estrogen. In general, the earlier a woman begins having menstrual cycles and the later she goes through menopause, the more estrogen she is exposed to and the greater her risk. Pregnancy, breastfeeding and birth control pills interrupt this estrogen stimulation and improve the balance with progesterone, thereby reducing the risk of endometrial cancer. Obesity increases the risk because fat tissue converts other hormones to estrogen in the body. Other medical conditions like diabetes and high blood pressure are statistically associated with higher rates of endometrial cancer, but it is thought 46

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that the risk may be caused by the increased rates of obesity in these illnesses. The breast cancer drug tamoxifen is structurally similar to estrogen and slightly increases the chances of endometrial cancer; however, the reduction in breast cancer recurrence for women who use this drug far outweighs the risk. Finally, women who choose to take estrogen for uncomfortable menopausal symptoms have a small increase in endometrial cancer risk unless they take progesterone at the same time.

As with many reproductive cancers, a family history of endometrial cancer or related cancers can be important in determining cases of increased risk where extra vigilance is warranted. A small percentage of women who get endometrial cancer carry a genetic mutation causing a syndrome called Lynch Syndrome or hereditary nonpolyposis colorectal cancer syndrome (HNPCC), which is associated with colon and endometrial cancers. In families passing on this mutation, multiple members are usually affected, often before the age of 50. Having a mutation doesnâ&#x20AC;&#x2122;t necessarily mean a woman is going to get cancer, but it does increase her risk, so women with multiple affected relatives may wish to be tested.

Women with the mutation generally choose more rigorous screening; some have undergone prophylactic hysterectomy (preventive removal of the uterus) to decrease the chances of contracting cancer, but this step is controversial. Because the decision to get tested is highly personal, it should be discussed with a doctor who is trained in counseling patients about genetic testing.

WHAT ARE THE SYMPTOMS? One of the more frequentâ&#x20AC;&#x201D;but not universalâ&#x20AC;&#x201D;symptoms of endometrial cancer is abnormal bleeding. Any new onset bleeding in a post-menopausal woman should immediately prompt an evaluation for endometrial cancer.

For pre-menopausal women or peri-menopausal women, endometrial cancer may produce bleeding in between periods or bleeding that is unusually heavy or longlasting.

Unfortunately, diagnosis for these younger women is complicated by the fact that many common benign conditions can produce the same symptoms. For instance, this bleeding pattern can be seen with non-cancerous fibroid tumors of the uterus. Roughly a third of all women have received a diagnosis of uterine fibroids, and ultrasound studies show that by age fifty, 70 percent of Caucasian women and 80 percent of African-American women have developed these frequently uncomfortable but relatively harmless tumors.

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Other symptoms may include abnormal vaginal discharge, pelvic or back pain, pain with urination or sexual intercourse, or blood in the stool or urine. Nevertheless, all of these symptoms are non-specific and could represent a variety of different conditions.

Because the rate of endometrial cancer increases after age 35, the American College of Obstetricians and Gynecologists currently recommends endometrial evaluation in any woman age 35 or older who has abnormal uterine bleeding. For younger women there is no smoking gun that dictates an evaluation for endometrial cancer, but women with symptoms or risk factors may wish to discuss an evaluation with their doctors.

WHAT ABOUT SCREENING AND PREVENTION? Unfortunately, no good tool yet exists to allow accurate, widespread endometrial cancer screening. Therefore, for asymptomatic women without a family history/genetic syndrome, the best way to prevent endometrial cancer is to alter the risk factors they have control over. For instance, women who are overweight can get weight loss assistance, limit animal fats, increase fruits and vegetables and get regular exercise. Women who wish to get pregnant should try to do so before age 30, and all women should consider using methods of birth control, like oral contraceptive pills (OCPs) or depoprovera injections, that provide progesterone balance. Multiple studies have confirmed that OCPs reduce the risk for endometrial cancerâ&#x20AC;&#x201D;as well as ovarian cancer, ectopic pregnancy, pelvic infections and a host of other gynecologic problemsâ&#x20AC;&#x201D;and that the longer a woman takes them, the greater their preventive effect.

Women who are carriers of the gene for Lynch Syndrome need more rigorous screening, with annual endometrial biopsies starting at age 35, but this level of screening has not been shown to be useful for women without the family cancer syndrome.

HOW IS ENDOMETRIAL CANCER DIAGNOSED AND STAGED? The primary tool in evaluation when endometrial cancer is suspected is an endometrial biopsy, where a thin flexible tube is passed through the vagina and ABILITY 47

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cervix into the uterus and a small amount of the endometrium is removed. The biopsy can be somewhat uncomfortable, but it does not require surgery or anesthesia and can be performed in the gynecologistâ&#x20AC;&#x2122;s office.

Sometimes the endometrial biopsy does not provide enough tissue, and a dilatation and curettage (D&C) procedure is needed. D&Cs are done in the operating room under anesthesia. The doctor dilates the opening to the uterus and then uses a tool called a curette to scrape a sample from the lining.

Many times abnormal bleeding in younger women is first investigated with a transvaginal ultrasound. An ultrasound uses sound waves that bounce off tissues to provide a picture of whatever is being investigated. By inserting an ultrasound probe into the vagina, doctors can get a good visualization of the uterus, the fallopian tubes and the ovaries. A transvaginal ultrasound can identify ovarian abnormalities, uterine fibroid tumors and increased thickness of the endometrium that may indicate a need for biopsy.

To guide treatment and understand prognosis, staging is necessary. Surgical treatment and staging are generally done within the same operation, with a careful inspection of the uterus, other organs in the pelvis and the pelvic lymph nodes. Biopsy specimens are sent to a pathologist while the surgeon is still working, and staging is done according to a system established by the International Federation of Gynecologists and Obstetricians. Stage I cancer is confined to the body of the uterus, without any spread to the cervix; stage II cancer has spread to the cervix but not outside the uterus; stage III cancer has spread outside the uterus, but is confined to the pelvis without involving the bladder or rectum; stage IV cancer has spread to the bladder or rectum or has more distant metastasis (seeding) in other organs. While most aspects of staging are done at surgery, physicians sometimes order additional tests for clarification before or after surgery, such as CT scans or MRIs, a colonoscopy to examine the rectum and colon, or blood tests for cancer markers such as CA-125, which can suggest the presence of cancer outside the uterus. Every personâ&#x20AC;&#x2122;s case is different, so the combination of tests varies to allow doctors the best information available for planning successful treatment.

WHAT TREATMENTS ARE AVAILABLE? Almost all women with endometrial cancer have some type of surgery in the course of treatment, both to stage the cancer and to remove as much of it as possible. Most women undergo a hysterectomy (removal of the uterus) and bilateral salpingo-oophorectomy (removal of both ovaries and fallopian tubes), because there is always a risk of microscopic disease in both of the ovaries and the uterus. In young women who have very early cancer (stage IA), it is sometimes possible to maintain fertility by treating temporarily with other modalities, then remove the uterus and ovaries when child-bearing is finished. For women with stage I and stage II cancers, all visible areas of tumor can generally be removed during 48

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surgery. For women with more advanced cancers, even if some tumor remains after surgery, removing as much cancer as possible improves outcomes and can help decrease pain and lessen other symptoms.

Depending on the cancer stage, women with endometrial cancer often receive radiation treatment as well. Radiation therapy uses high energy rays to kill cancer cells and decrease chances that the cancer will come back.

Radiation comes either from an external source (external beam radiation) or from an internal source (brachytherapy). External beam radiation requires patients to come in to a radiation treatment center five days a week for up to six or eight weeks. Patients receiving external beam radiation may also be offered brachytherapy (also called intracavitary irradiation), which allows a higher concentration of radiation directly at the tumor bed, providing increased effectiveness while sparing normal tissues. A tube is placed in the vagina, and a small radioactive source is place inside the tube. Various different protocols and techniques for brachytherapy are available, some using higher doses over shorter time periods and some using lower doses over longer time periods. It is important for each woman to get information about the range of radiation therapy options available for her individual case. Radiation treatment can cause the lining of the vagina to thin and may cause light bleeding after intercourse. Use of a dilator helps maintain stretch and minimizes the formation of scar tissue.

Chemotherapy, the use of anti-cancer medications, is reserved for women whose cancers are very advanced or recur after treatment with surgery and radiation. Some of these women may also receive hormone therapy if the pathology examination finds their tumor cells have receptors for estrogen or progesterone.

Women who have been treated for endometrial cancer need to be followed closely for recurrence. The highest risk is in the first three years after diagnosis, and followup during this period involves visits to a cancer specialist several times a year. A variety of monitoring methods may be used, including sampling of vaginal cells, ultrasound, CA-125 levels and/or CT scans, depending on the case. It is important for women to report any symptoms they experience.

Many questions remain unanswered about the best treatment protocols for endometrial cancer and the best ways to help detect it earlier, particularly in women who contract the cancer before menopause. The more women are able to educate themselves about the factors that put them at risk for gynecologic cancers, the symptoms and the methods of detection, the better they will be able to advocate for care that may save their lives.

by Gillian Friedman, MD Womenâ&#x20AC;&#x2122;s Cancer Network www.wcn.org

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or many people with disabilities, the job search is a challenge of epic proportions. The search for that elusive job that is a good match for one’s particular skill sets and interests can make anyone feel like David facing off with Goliath. But there is hope for jobseekers with disabilities: through its Ticket to Work program, the Social Security Administration (SSA) has created tools that are significantly more substantial than a slingshot and stone.

The Ticket to Work program is free and voluntary. It supports individuals with disabilities throughout the process of employment by acting as a safety net until they are certain they’ve found the right job. Ticket to Work aims to increase choice in rehabilitation and vocational services, remove barriers that require people with disabilities to choose between health care coverage and work, and provide more people with disabilities the opportunity to participate in the workforce.

As part of the program, eligible participants receive a ticket in the mail. Ticket-holders redeem their tickets for services from public or private providers in their local communities, including state vocational rehabilitation agencies, employer networks, and similar agencies working to help people with disabilities enter the workforce.

This year, SSA is taking the program a step further by organizing a 10-city Ticket to Work Conference and Expo tour giving event participants—beneficiaries, employers and service providers—a better understanding of the Ticket to Work program and the ways that the tickets are useful for landing fulfilling and rewarding employment. By showcasing services and products that support people with disabilities, the expositions aim to make the process of finding the right job manageable and straightforward for ticket-holders. Key participants throughout the tour include Allstate Insurance Company, America Online, Cingular Wireless, Continental Airlines, Hyatt Hotels, IBM, IDX, JP Morgan Chase, Major League Baseball, Microsoft, Monster.com, Pathmark and Prudential Financial.

“Ticket to Work was created to help Social Security disability beneficiaries who want to work to achieve their employment goals,” says Jo Anne Barnhart, commissioner of Social Security. “The Ticket to Work Conferences and Expos provide a comprehensive, localized

approach to helping people with disabilities find the right jobs for them, no matter where they are in the process.”

Each one-day expo is free to attendees and introduces beneficiaries to the employment search process and the how-to of interviewing and applying for positions, providing strategies to obtain rewarding and successful employment. Tom Sullivan, an actor, singer, entertainer, author and producer who was born blind, is the keynote speaker at the events. His presentation tells the story of his personal experiences as an Olympic-class wrestler, avid snow skier and marathon runner, and offers encouragement and advice for job-seekers.

Says Sullivan, “I’m thrilled to be attending each and every one of the Ticket to Work Expos because I know they will help provide real skills and opportunities to people with disabilities—people just like me.”

In addition to Sullivan’s address, the expositions offer a number of career opportunities and informational sessions to help people advance. Attendees have the freedom to attend sessions or explore the exhibition area.

Sessions include a Ticket to Work program overview with an explanation of how Social Security benefits evolve once ticket-holders return to work; career counseling and interview strategies that are specific to the Americans with Disabilities Act; and tips, tools and resume-building pointers to shape a successful employment search.

The expo floor, mirroring the employment process, offers opportunities for attendees to meet one-on-one with representatives from Social Security, benefit counselors and potential employers. It starts with an introduction to the Ticket to Work program, then moves to individualized meetings with benefits specialists, conversations with employment service providers and, finally, introductions to local and national employers.

The Ticket to Work Conference and Expo tour is about more than helping people with disabilities find jobs—it is about helping individuals build careers based on their talents, skills and interests. www.tickettoworkexpos.com www.yourtickettowork.com www.socialsecurity.gov/work ABILITY 49

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fledgling flame winks and flirts inside a stained glass cylinder on the table. A blonde college student runs around, trying to collect cover charges from java-drinkers filtering in off the sidewalk. Mauve walls display hanging area rugs, surrealist paintings and photographs of past performers. Soon Mark Goffeney’s picture will join the collage.

Goffeney, lead guitarist and vocalist for the band Big Toe, loves playing at coffee houses like Le Stats in his hometown of San Diego. But he’s not limited to cafés. Just as varied as Goffeney’s attire—black silk shirt, construction-worker-orange shorts and brown sandals—are the venues where Big Toe rocks and the roles Goffeney himself has played: actor, advocate and artist. But in the same way that a coal-black top, tangerine shorts and sepia shoes can jive together in just the right way, this musician’s diverse endeavors are the proverbial roads that all lead to one cause: unity among people.

Born without arms, Goffeney has been a performer as long as he can remember. Some of his earliest performances were between ages eight and thirteen, when he helped host Easter Seals and March of Dimes telethons.

“I was their poster child,” he laughs. “So I think I got over the fear of performing. Well, actually, I never really got the fear of it.” He always knew he wanted to be a musician, but playing trombone in the school band didn’t satisfy his desire to rock. So a friend gave Goffeney a guitar demonstration, and he just imitated what he saw his friend do—only he imitated with his feet.

And his passion was stirred. From a ninth-grade band called High Octane that played pizza joints on the weekends, to a KISS-flavored hard rock group, to the debut of Big Toe, Goffeney has immersed himself in music however he could get it. He’s played solo. He’s played in retirement homes. He even learned to play the bass to increase his chances for joining a group. “Everybody was playing guitar in the ‘80s,” he explains. “And everybody wanted to play lead guitar, so it was hard to get in a band. So I started playing bass.”

Eventually, though, getting in wasn’t enough; Goffeney wanted to set his own pace. With another guitarist, he founded Big Toe in 1992, and seven years later PSB Records signed the band to a CD deal…on one condition.

Goffeney had to work with Steve Dudas, former producer for Aerosmith, Ozzy Osbourne and Ringo Star, to refine the songs for the band’s self-titled album. “I got to sit on the same chair that Steven Tyler sat on when he was there,” says Goffeney. “Steve Dudas was very professional, very good. He let me know in no uncertain terms that I was an amateur and I needed to listen to him.”

Several years and many record sales later, Goffeney is no longer an amateur performer. He has appeared on television as an actor and a musician, and has spoken to audiences all over America advocating for the rights of ABILITY 51

One incident that was particularly key in changing Goffeney’s attitude in Europe from awkwardness to advocate involved the boyfriend of a worker on Lippe Blofft.

“He started busting my chops,” as Goffeney puts it. “We almost got into it.” The guy harassed Goffeney about his disability and his career, insinuating that he only got gigs because people felt sorry for him and that he could never make it in Germany. “I’ve always been very comfortable with myself, but I went through a real crash course in what I think people go through who acquire a disability later in life. But I got over it in about a week. I became a champion of the people with disabilities over there, just by being an example.”

Back in America, he developed a greater appreciation of the effects of the Americans with Disabilities Act and the way that legislation has shaped attitudes, particularly in younger generations. As a child, Goffeney was one of the first children with a disability to attend regular public school in his district—and that was only after his mother battled the school board. On his first day in a new second grade classroom, news cameras surrounded the building, and because the principal had announced to all the students that a boy with one arm would be enrolling, the entire school was shocked by the appearance of Goffeney, a seven-year-old with no arms at all.

“The kids were like, ‘Okay, big deal, so what, we’re over it, move on.’ The teachers were tripping. My teacher assigned me a helper, and that was an interesting relationship. She didn’t like it and I didn’t like it, so we used to bicker like husband and wife. We approached the teacher together and said, ‘We want to annul this relationship.’” After that, Goffeney was fine, finishing out his public school education independently. Audiences that include a lot of teachers eat this story up, and Goffeney enjoys letting instructors see the special education issue from the other side. He is a living testament to what can happen when barriers are removed and children with disabilities are treated like their

typical peers. To help raise awareness, Goffeney uses the music platform to share his personal story.

Seated on a stool, five toes picking out chords, five strumming the strings, his whole body moves with his intensity for music. The same enthusiasm echoes in his voice as he belts out the lyrics to “It’s Only Rain” or “We Are the Same.” With four band members and a lot of energy, Big Toe’s sound is upbeat rock fast-paced enough to bring even non-coffee drinkers to their feet.

And while some of his songs are what he dubs “selfindulgent,” with lyrics about his own life experiences, many are more socially aware tunes affirming the worth of all humans and reminding people to get along.

“I’ve always hated the idea of being separate from people. I think it’s easy for people to feel like they’re guests in the world, and they forget the world belongs to them as much as it does to anybody else. We have a right to be here, people with disabilities, people without disabilities, and I think if we truly believe that, we can live a more fulfilling life. My biggest hope is that people begin to feel less alienated from each other. That’s why I like music—music unites people.”

by Noelle Kelly

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people with disabilities. He played the principal role on FOX’s Emmy-nominated commercial Feet. The advertisement, aired during the 2000 and 2001 Super Bowls, was for the NFL website, and it told the story of a character named Roger who was so obsessed with the website that he did everything else with his feet—including changing his baby’s diaper. As a father of three, Goffeney is an expert at caring for children sans hands, so he played the feet. When the director announced the baby would wear cloth diapers, Goffeney didn’t bat an eye; his first diaper-changing experiences involved his baby brothers in the ’70s. But some mothers of the auditioning babies got jittery about the safety pins, which cost their children the role. “They waited for a mother who had nerves of steel,” Goffeney remembers. “They picked the baby based on the nervousness of the mom.”

Because of his rare ability, Goffeney could command his salary for the role—quite a bit higher than the Screen Actors Guild standard FOX originally offered.

Cash is not always easy for musicians to come by, though. To pay the bills, Goffeney has worked in various jobs: as a telemarketer, in roofing, with adults with disabilities, with teenagers in transition. But his passion for playing didn’t die, and he eventually quit his day job to pursue 52

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performance full-time. “I would play anywhere they’d let me,” he remembers. As Big Toe scored more and more gigs, Goffeney moved his practice venue to Balboa Park, famous in San Diego for street entertainers.

“We are actually licensed to play for tips,” he explains, and some days he brings home $200 to $300 in one day.

“Sometimes I get a complex because some people might think I’m panhandling. But had I been born with arms, I still would have wanted to do this. I’m not going to not do it because not everybody gets it.”

More than just a place to practice, Balboa Park has been an interactive business card for Goffeney and Big Toe. His biggest break came when a producer for Europe’s Lippe Blofft, a David Letterman-style program, caught Goffeney’s park bench act. He got in touch with Goffeney later, flew him to Germany, and put him on-stage opening for LeAnn Rimes. Goffeney spent the money he earned on an extra week in Deutchland, playing and partying. But the vacation was a mixed bag for him. The tourism aspect was entertaining, and he made some good contacts professionally. But he also battled stereotypes he had never come up against in America. “I’d heard there was kind of a carry-over from the Nazi era, that disabled people were very much shunned, and it was kind of like that there. Eating with my feet in a restaurant, even if I washed them first…they were very stare-y, German people. I felt a little bit uncomfortable with my disability for maybe the first time in my life. So I rebelled against that. I noticed that people’s reactions to me were different once I quit worrying what other people were thinking.”

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G

azing out the window of her Southern California home, Valerie Sobel sees the brilliant colors and shapes of the San Jacinto Mountains. The Swiss Alp-like vista does not, however, erase the memories of a much different view—narrow gray walls lining a hospital corridor. Sobel was told of her 18-year-old son André’s inoperable brain tumor while standing in a barren basement hallway of the University of California–San Francisco Medical Center. She remembers passing out, with no desire to return to an unbearable reality. Earlier that day, her husband had been admitted as a patient in the intensive care unit, the stress of his son’s condition having exacerbated an ongoing illness. Sobel recalls, “I was there alone with my child in this gray basement for the most life-changing consultation of our lives. One of the doctors attending was already scrubbed for his next surgery, and the other doctor added to this Kafkaesque, surreal scene by having just come out of surgery blood-stained. In that instant it crossed my mind that this should never happen to other parents.”

André died a year later, and her husband passed away shortly thereafter. Sobel became determined to honor her son’s memory by helping other children. Still, it took time for her to find how to best make an impact. “At first I wanted to help gifted young people who were like André but did not have the advantages of his home life. I was allowed by an organization called the Covenant House to tour with their mobile unit at night. I learned about runaways and met homeless children living under bridges; I became a courtappointed special advocate and visited juvenile detention centers and holding facilities. It was only after a couple of years that I realized I have no training or understanding of atrisk youth. The only thing I truly know is what the mother of a terminally ill child feels and needs.” In 2000, with the memory of months spent caring for a dying son, Sobel created the André Sobel River of Life Foundation (ASRLF) to help soften the crisis faced by parents of children with life-threatening illnesses.

Now, Sobel, a former interior designer whose work has been published in Architectural Digest, is launching the foundation’s newest project: helping hospitals create soothing rooms in which medical specialists can discuss patients’ care with families. She intends to develop environments that send a subliminal message of hope and safety, in contrast to the confusion produced by a bustling, fluorescent-lit hallway.

Reflecting on her memories of receiving news about André, Sobel says, “I see that awful corridor. I see the exact color of gray, the blue neon lights, the coldness, the narrowness.

Would it have been sweeter in another place? Not sweeter, but more respectful and less

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Valerie Sobel with her son André

threatening. There was something so hideously institutional about the experience. This room we build has to create the color of hope, the sound of hope, the texture of hope in every way that reaches the senses.

Because nobody knows with a terminal diagnosis who will survive.”

Sobel has organized a unique group of architecture professors from Texas A&M University, many of whom started their careers as psychiatrists and now craft their designs using principles from behavioral science, color theory and research about the ways space affects the comfort and dynamics of groups. A collaborating scientist has spent her life creating healing spaces and investigating the subliminal effects of environment on the outcomes of illness and trauma. Sobel’s work will bridge multiple modalities, creating a cutting-edge, comprehensive strategy that has not previously been pulled together.

The general principle motivating Sobel’s design efforts is not new. In 1992, Robert Buckman’s famous text How to Break Bad News: A Guide for Health Care Professionals explained that what patients and families hear and understand, how they react to and integrate the information they receive, and what consequences occur for their emotional well-being depend very much on the environment that is set for them and how the doctor conveys the news.

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Unfortunately, crucial steps for preserving families’ sense of emotional safety are frequently overlooked, due to lack of space, busy schedules and poor emphasis on the importance of the emotional as well as the technical aspects of medical care.

It is a well-known truism that structure informs function, or as the movie Field of Dreams puts it, if you build it, they will come. One of the most effective ways to induce change in a system is to create physical surroundings conducive to the behavior one wishes to encourage. Despite education for physicians and other health care workers about steps necessary to give lifealtering information in a less traumatic way, these practices will not be adopted in widespread fashion until a physical space set aside for them underscores their importance as an expected part of medical care.

Beyond these efforts to facilitate a more supportive physical environment in hospitals, the André Sobel River of Life Foundation helps families of children with life-threatening illnesses in other crucial ways throughout the course of treatment. Sobel’s financial resources allowed her to spend extra time with her son during his final year of life. How many mothers, she wondered, lack that opportunity? She realized the typical single mother faces a desperate choice: leave her job, fail to support her family and lose her health insurance; or continue working and miss irreplaceable

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time with her dying child. Says Sobel, “One woman we helped told us that the amount of money she would need to be able to stay home with her child was $800 a month.

Imagine the absurdity that forces a mother to leave her critically ill child and go to work, just so she can pay a stranger to do the things she wants to do most.”

The André Sobel River of Life Foundation offers financial support to single mothers so they can remain by their children’s side throughout life-threatening illness. Explains Sobel, “By caring for the mother, we care for the child.” The foundation works with several pediatric medical facilities throughout the country.

Social workers at these centers assess and recommend families to the foundation when financial assistance from other resources has been exhausted. By working through social worker recommendations, the foundation eliminates the barrier of the lengthy application process required by most foundations. Sobel says, “One foundation requires families to fill out a 17-page application and then wait for it to be evaluated.

Basically, ours is a two-page document filled out by the social worker; we never ask the parent, who at that point should not have to deal with filling out another piece of paper. The social worker checks boxes indicating what resources have already been exhausted—this is their due diligence.” The foundation sometimes helps a desperate family within hours. To monitor the process, Sobel meets periodically with the social workers involved at

participating hospitals. “The only abuse we could experience is if other resources are not thoroughly checked first. But our social workers know they have a very small golden goose they could easily kill if misused. So the system works beautifully.

“Our goal is mental health for the caregivers, letting them deal with the crisis without worrying about going to work the next day. When a child has something growing in his head or in his spine that is creating 10 billion new aberrant cells every minute, his mother will not go to work because there is no time to waste. She will take her child to the best place she can get treatment as quickly as she knows how, the best her circumstances can afford.”

The ASRLF recognizes that pediatric illness affects an entire family, and the foundation supports a variety of family needs. Almost 50 percent of its disbursements go to emergency housing, utilities and groceries for families facing inadequate food supplies or eviction.

The foundation also funds caregiver respite, transportation for families with no resources to get to treatments or visit their sick children, activities such as ballet lessons for a patient’s sibling, and often burial costs. “We try to support what the government can never be expected to support,” explains Sobel, who continues to be astounded by the desperate situations of so many families and their inability to meet basic living ABILITY 57

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to families fall in the $100 to $3,000 range, so $5,000 would make a big difference in these families’ lives.”

needs through other programs.

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While the ASRLF began its partnerships with California hospitals, this year the foundation has expanded its outreach nationally. The ASRLF’s family assistance program is now housed at some of the most prestigious children’s research and treatment centers across the country, including Memorial Sloan-Kettering Cancer Center in New York, The Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Texas Children’s Hospital in Houston, Children’s Hospital Medical Center of Akron in Ohio, and Children’s Hospital Boston, the pediatric teaching hospital of Harvard Medical School.

“We typically come in on the day of the diagnosis when a social worker says, ‘Here is an indigent family—we don’t know how we are going to treat them yet, but we know they have nowhere to stay tonight.’ A family may have immediate needs but a long wait before other funding sources kick in, or they may simply have run out of resources. We have assisted many mothers who had $80,000 to $100,000 salaries before their children became ill, but after six months needed food stamps. These parents are proud and often feel that by asking for assistance they may somehow make matters worse for their children. But by the time we get them, they have no other choice. We not only issue a check, but we investigate how the family got to that point and how they will pay the rent the following month. We go to the landlord proposing, ‘We will pay four months of rent in advance—will you give us six?’”

For the success of her efforts, Sobel was recently nominated for a Minerva Award, created by California’s First Lady Maria Shriver to honor women who have made significant contributions to their professions and created positive change with lasting impact.

Sobel has also witnessed the tremendous strain on marriages when a child receives a terminal diagnosis.

She cites preliminary research suggesting more than three-fourths of couples separate or divorce within the first year of their child’s diagnosis. “If there is the smallest fissure in a marriage, it cracks,” she explains.

She looks forward to the attention this issue will receive with a new study by the National Institutes of Health.

The study is investigating the number of children in the U.S. who receive terminal diagnoses each year, the number of caregivers who become ill themselves as a result, the percentage of families that dissolve, the effect on siblings, the fallout to the federal government and other far-reaching effects of terminal illness. Sobel hopes the information the study brings will have a positive impact in shaping future health policies.

The contributions of many—individuals, corporations, organizations—are necessary to enable the ASRLF to continue helping families through the journey of each terminally ill child. Sobel wants parents to spend every minute they can with children who sometimes don’t have many minutes left to spend. And, as evidenced by the foundation’s newest project, she wants the beginning of the process to be as positive a start as possible. She cannot change the diagnosis for terminally ill children, but she can help kids and their families gets a taste of the quiet peace she sees in the mountains behind her home. In that view, there is hope.

Armed with such information, Sobel hopes to effect legislative changes that would make a tremendous difference for families facing a child’s terminal illness.

“Similar programs are already in place for other caregivers. For example, caregivers of the elderly can receive a $5,000 tax rebate from the federal government. The majority of our foundation’s donations

If you are interested in donating to the André Sobel River of Life Foundation, please ask your employer to match your donation.

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As gratifying as the progress has been, Sobel knows her family’s endowment of the ASRLF is not sufficient on its own. For the foundation’s work to continue, it must increase its ability to garner donations, matching grants and corporate sponsorships. “We have a great program, but the program is tied to the funds. We are giving away $500,000 to $600,000 annually in direct assistance, usually within 24 hours of the request, to people who would have no help otherwise. If we exhaust our funds, we will have nothing to give. I have great hope that the state and federal government will help once the awareness is created, but at the end of the day, the role of the private sector is most significant, and no one person has deep enough pockets.”

www.andreriveroflife.org 310.276.7111

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continued from page 45

Drescher: I’m very busy and I have a lot on my plate.

Recently I bought an apartment in New York, which I’m really enjoying. I’ve never lived in Manhattan before, other than to stay in hotels; I just got back from a two month trip, and it was incredible.

Cooper: Do you know John C. McGinley from Scrubs?

We interviewed him for a past issue of ABILITY. He doesn’t live far from here.

Cooper: Two months in New York?

Cooper: Oh—a movie together. For a second, I thought you said you moved in together.

Drescher: Yes, with intermittent side trips—to Washington DC, to Jamaica and to Miami, where my parents live. In celebration of my five years of wellness, I threw a wonderful party on the roof of my building. I also bought an important piece of art that day. The week I found out I had cancer, I bought a Botero sculpture of a nude woman lying on her side, and at my five years of wellness I bought another beautiful nude of a woman who is taking a thorn out of her foot. I found the theme to be symbolic on the anniversary of my wellness.

I like to travel, I like to entertain, I like to cook. I’m very music driven; I love going to concerts, I love musicians and I love music. I just wrote a hip-hop song for a friend of mine. I have meetings about my WOMB organization. I’m writing for the show and we begin production shortly.

Cooper: You’re keeping busy.

Drescher: Yes, I am. And I love my home right on the beach with its magnificent view. It’s a nice lifestyle here.

Drescher: Sure, we did a movie together many years ago.

Drescher: (laughs) No, I was married at the time.

Friedman: Are you doing any volunteer work in addition to starting WOMB? Drescher: I show up for a lot of fund-raising events. I think it’s important for celebrities to bring focus to important causes and help get national exposure. I try to focus on the events that reach a lot of people. I get all kinds of invitations: “Can you come to my kid’s elementary school? They would be so excited.” And of course, I would be excited too. But there’s only so much of me to go around, so I have to do as much good in one fell swoop as I possibly can. foreword by Romney Snyder Johanna’s Law www.johannaslaw.org Warner Bros. www.thewb.com

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Passion:

The Meaning of Life An old legend tells of a very prosperous man, Siridean, who became frustrated with an inner sense of emptiness and embarked on a quest to find the meaning of life. He traveled far and wide, meeting with the most outstanding leaders of his time. From each he sought knowledge of the meaning of life, but nothing he heard satisfied his desire to understand.

Then one day he heard of a very wise and enlightened man who lived on a mountaintop in a faraway land.

When Siridean arrived in the man’s village, he found many peasants who said the sage would most certainly be able to offer guidance. Siridean was granted an audience with the old man, and he shared his desire to know the meaning of life. He explained at length his journey so far and his frustration at finding no help.

The old man smiled, stood and left the hut. Siridean was shocked by the teacher’s indifference and lack of compassion. Torn between anger and bewilderment, Siridean stormed from the hut in time to see the man stepping into a beautiful mountain lake behind the village.

When Siridean reached the lake, he followed the old man into the water. Waist-deep in the cold water, the old man turned and smiled.

Siridean demanded, “Old man, what is wrong with you?

I traveled thousands of miles to see you. I poured my heart out to you; you are my last hope. But after I shared everything with you, you simply turned from me and went for a swim!

The old man continued to smile, then gently yet deliberately pressed down on Siridean’s shoulders. Puzzled, Siridean stood his ground. The old man pushed down even more forcefully until Siridean knelt, cold water up to his chin. Again, the old man increased the pressure of his hands.

At a loss, Siridean thought, “Perhaps he wants me to dunk my head under water. Maybe this is a baptism of sorts.” So he took a breath and dunked his head. The icy water stung his face, but the old man’s grasp remained. For many seconds, Siridean remained submerged, waiting for some sign from the old man, but nothing changed. He thought of the travels he had undertaken, the disappointment he felt at not learning the secret of life, and the incredible and almost laughable failure of this last effort. Perhaps this is the meaning of life, he thought—there is no meaning!

Chuckling to himself, he decided to end this

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encounter, get into some dry clothes and head home.

As he tried to stand, the old man’s grip tightened. Again Siridean pushed to get to the surface, but the old man continued to hold him under the water. No matter how hard Siridean pushed, the old man resisted and relentlessly held him submerged. “What kind of a maniac is this guy?” Siridean thought as he desperately struggled to rise. The old man’s vise-like grasp was unwavering, unyielding. His lungs bursting, his mind reeling, intent on getting that life-saving breath of air, Siridean gave one last desperate surge to get to his feet. Slowly he was able to move the old man’s hand a few inches up…then a few more, and finally his face was out of the water.

Coughing and gasping for air, Siridean gaped at the old man, who stood looking at him, still smiling. Getting his breath back, Siridean demanded of the old man, “What is wrong with you? Couldn’t you tell I was drowning? I needed air and you held me down!”

The old man said, “Son, you came to me and asked me the most noble of questions. You sought the meaning of life. You were honest in your most heartfelt request. You told me of all the sacred writings and books you had read without finding the answer. You told me of the countless people you had asked and told me that all their words left you still empty. That is because there are no words to share that will fill that emptiness.

“But I tell you now what I know about the meaning of life. When you commit yourself to any undertaking as much as you just committed yourself to getting that breath of air, you will know the meaning of life. When you struggle and persevere against all odds and beyond all hope and even down to your last breath, you will know the meaning of life. When you are as complete and unrelenting in your desire to succeed, when your passion for achieving your goals is as all-consuming as your desire for life, you are then living your passion, and that is the meaning of life.”

The old man’s wisdom applies not just to Siridean, but to anyone who desires to find and live out the meaning of life. People do their best work and achieve their best results when they are passionately committed to something. People become passionate about raising a family, building a career, maintaining relationships and fighting for ideals such as freedom, liberty and peace.

For those in the World Ability Industry, the industry

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dedicated to improving the lives of people with disabilities, and for the one out of every five people globally who live with a disability, these primary motivational forces should be present every day. Living your passion in this industry means making the commitment to work each day to improve your life and the lives of those around you. People primarily motivated by fear, frustration and dissatisfaction have not fully ignited their passions. When passion is present, all other emotions become impotent. But how does someone make a commitment and ignite his or her passions?

As the saying goes, fake it till you make it—that is, act as if something is true until it becomes true. The inverse is also the case, however: a person who is preoccupied with what is not, rather than what is, grows the negative in his or her life. The goal of the World Ability Industry is to focus on the ability, not the disability.

All people do better—people with disabilities and people without disabilities—when they are self-determined and passionate about their ability to do a job in spite of all obstacles. Prejudice against people with disabilities is not an issue of malice as much as it is an issue of ignorance. People think a person with a disability would be troublesome as an employee, but Department of Labor statistics show just the opposite. The fight to gain employment despite barriers has made many people with disabilities passionate to achieve. Passionate people perform better not just as employees but as students, teammates, parents and parishioners. Those who are passionate also live richer and happier lives.

What are some of the ways to fake it till you make it?

Get more involved with the World Ability Industry.

Become active in organizations. A Google search using the terms disability and organization returned over ten million sites worldwide. Get involved. If you are involved but not passionate, get more involved. Participate in programs, support local organizations, champion a cause or volunteer your resources to an organization, scholarship program or research project. Each of these endeavors will not only help ignite greater passion in your life, but will generate more possibilities for people with disabilities in the future.

The World Ability Federation is committed to improving the lives of people with disabilities by bringing focus to the World Ability Industry. Through the annual World Ability Awards Gala, we spotlight those within the Ability Industry who have accomplished great things

during the year. Anyone can participate in this important event by nominating an individual or organization that has done truly outstanding work helping people with disabilities. All nominees will receive recognition for their efforts. Last year, a World Ability Award winner successfully competed for a federal grant and was told that one of the determining factors in the decision was receipt of the award at the World Ability Awards Gala.

You can also participate by attending the Gala, a formal awards program not unlike the Grammys or the Golden Globes, involving over one thousand people, including leaders in government, sports legends, Academy Awardwinning actors and actresses, internationally acclaimed performers and many others. But the highlight of the evening is always seeing those in our industry who are doing extraordinary things.

People who like sports can root for 30 professional baseballs teams or 32 professional football teams. But people who are passionate about the World Ability Industry have thousands of teams to choose from. Support the Special Olympics, an accessible art fair, a disability conference, breakthrough research, or a fundraiser or silent auction that raises money for a great cause.

Spend some time researching the many organizations that have found purpose and meaning by working in the World Ability Industry. And don’t forget about the thousands of companies like Microsoft, Invacare, Ford Motor Company, AVIS, HP and The Walt Disney Company that have poured millions of dollars into research and accessible products and services. Doesn’t it make sense to support these companies if you are a fan of the Ability Industry?

Our future is dependent upon our accomplishments. Our accomplishments are based on taking action in our lives to bring about results. Passion is the fuel that creates powerful action. Fortunately, with all the wonderful organizations and programs in the World Ability Industry, we don’t have to travel to a mountaintop and get dunked underwater to learn how to find passion. Find the passion in your life to do great things. Get involved in your industry—the World Ability Industry. You just may find the meaning of life.

By John Chmela and William Smith Founders, World Ability Federation For information about this year’s Gala and new projects from the World Ability Federation, please visit www.worldabilityfederation.com

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Highlighting Two 2004 Awardees

And the

winners wereâ&#x20AC;Ś The Employment Award recognizes the organization demonstrating the most extraordinary efforts toward providing employment for people with disabilities.

Winner: LaSalle Bank. For the past several years, LaSalle Bank has actively sought to hire people with disabilities. The bank provides a budget for making reasonable accommodations when they are needed and maintains relationships with more than 18 social service agencies that help develop employment opportunities for people with disabilities.

LaSalle Bank also assists those who manage employees with disabilities by increasing their awareness of the particular needs each employee may have.

The Transportation Award acknowledges the most innovative solution meeting the transportation needs of people with disabilities.

Winner: Avis Access. Through the development of its Avis Access program, Avis caters to the needs of people with disabilities by offering cars with hand controls, spinner knobs, swivel seats and panoramic rearview mirrors. The company has also made many of its airport transportation buses accessible to people with disabilities.

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