ABILITY Magazine Ty Pennington

Volume 2007 Issue 4 Ty Pennington

US $4.95 Canada $5.95

Ty cover 7/31/07 5:00 PM Page 1

Ty Ads

2

7/29/07

ABILITY

7:17 PM

Page 2

Ty Ads

7/29/07

7:19 PM

Page 3

ABILITY 3

TOC0730

7/31/07

1:15 PM

Page 4

E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

M ANAGING E DITORS Pamela Johnson Jane Wollman Rusoff

H EALTH E DITORS

E. Thomas Chappell, MD Larry Goldstein, MD Karl Gross, MD

C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)

E DITORS

8

HUMOR THERAPY — Wheel Fun! HEADLINES — National Employment Month; PTSD

12

MENTOR DAY — Disability Legal Right Center

13

EVE HILL — Honoring a Winner

14

MATT KING — Building Accessibility Into Your Computer

16

YOGA & MS — Ancient Practice/New Mobility

18

GOT SOY? — What’s the Fuss?

21

GREEN PAGES — Recycling 101

24

JAMIE SCHUBERT — Whoop De Doo To Cancer

29

RECIPES — It’s Greek To Us

30

BREAST CANCER — Think Pink and Grace Wright

34

TY PENNINGTON — From ADHD To ABC

44

CYNTHIA BASINET — Finding Her Voice

50

PATIENTS BEYOND BORDERS — Budget Surgery Abroad

Ty Pennington in HI

10

Cynthia Basinet - Crooner

C ONTRIBUTING W RITERS

Harriet Cabelly George Covington, JD Courtney Gale Linda Boone Hunt Gale Kamen, PhD Paula Pearlman, JD Deborah Max Myles Mellor - Crossword Puzzle Allen Rucker Kristen McCarthy Thomas Betsy Valnes Jacob J. Wascalus

H UMOR E DITORS Jeff Charlebois Gene Feldman, JD

W EB E DITOR Joy Cortes

G RAPHIC A RT / I LLUSTRATION Medical Tourism

Scott Johnson Paul Kim Melissa Murphy - Medical Illustration

P HOTOGRAPHY

Andrea Bock (Ty photos) Lisa Wells

T RANSCRIPTIONIST Sandy Adler

DIRECTOR OF BUSINESS AFFAIRS

60

TOM OLIN — Chief Photographer of the ABILITY Movement

62

ABILITY CROSSWORD PUZZLE

66

EVENTS & CONFERENCES

66

SUBSCRIPTION PAGE

John Noble, JD ABILITY’s Crossword Puzzle

C

O

N

T

E

N

T

S

Jamie Schubert, flying on the left, tries to keep up with son Tyler

Dahvi Fischer Kanani Fong Renne Gardner Sonnie Guitierrez Eve Hill, JD Glenn Lockhart Josh Pate Maya Sabatello, PhD, JD Romney Snyder Lisa Wells

MARKETING/PROMOTIONS Lisa Palmer Andrew Spielberg

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

EDITORIAL CORPORATE SHIPPING

DISTRIBUTION

ADVERTISING

8941 Atlanta Ave. Huntington Beach, CA 92627 Tel 949.854.8700 TTY 949.548.5157 Fax 949.548.5966

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

For advertising information e mail advertising@abilitymagazine.com or call 949.854-8700 ext 306

Editorial@ABILITYmagazine.com

NON-PROFITS

ABILITY Awareness Habitat for Humanity International

PUBLISHER

C.R. Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved.

Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices.

POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2007 Issue 4 Ty Pennington Printed in U.S.A.

WWW. ABILITYMAGAZINE . COM The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2007 ABILITY Magazine

Ty Ads

7/29/07

7:19 PM

Page 5

ABILITY 5

Ty Ads

6

7/31/07

ABILITY

11:58 AM

Page 6

Ty Ads

7/31/07

11:58 AM

Page 7

ABILITY 7

7/31/07

10:46 AM

Page 8

HH UU M MO O RR TT HH EE RR AA PP YY

WheelFun728a.qxd

I

f I were disabled and in a wheelchair, I think I would be a menace to society. Just for fun I would race around malls and “accidentally on purpose” run into people. They wouldn’t yell at me or hit me because, come on, I’m in a wheelchair and they would look foolish having a David-and-Goliath confrontation. Yes my friend, being in a wheelchair, gives you a license to terrorize folks.

It’s tempting to cruise around in a wheelchair. You can rest your flabby legs. People leap out of your way. You get patted on the head. Other people in wheelchairs, who think you ought to take the stairs, don’t sneer at you at in the elevator. Plus, you’re always moved to the front of the line. The bathroom stalls offer well-needed elbow room and possibly a racquetball court, if you can get up a game. And, the parking spots are to die for.

Wheelchairs are fun. There’s the joy of popping wheelies, jumping trashcans and zipping between people’s legs. The exuberance of flying down ramps and letting the wind whip through your hair like you’re eating a York Peppermint Patty. I can dig that. Just get out of my way or you might wind up in a wheelchair yourself.

If you’re in a wheelchair, you bet your boots people will cater to you. And there’s nothing wrong with that— unless you’re one of those goofy people with a conscience. When you go into a crowd in a wheelchair, the mob moves out of the way. This miracle reaction is right up there with the parting of the Red Sea. People like to tell other people to watch out, there’s a guy in a wheelchair. This gives them a good feeling that they’re helping out the world. It takes away their guilt for parking in that handicap spot.

How glamorous it might sound to be in a wheelchair, but there are issues. Cracks in the sidewalk can be troublesome. Brakes failing on steep ramps are no fun. Also, for some reason, you become a magnet to others searching for a friend. “Look at the poor guy in a wheelchair.

The crippled fellow is probably lonely and wants some

company.” Yeah, if you’re buying the drinks. But the worst thing is that everyone has that one story about when they were in a wheelchair that you would have to listen to. It usually starts out with the line, “I know what you’re going through...” Then you’re stuck in a bored limbo, listening to their ordeal when they had an ingrown toenail and were laid up for several hours wondering how they were going to get a Keebler cookie from the top cabinet.Yeah, they understand your plight, for sure.

The best wheelchairs are those electric scooters. Those things haul #@*. However, there is nothing more frightening than one of those all-terrain vehicles barreling down on you with some crazed old man at the wheel with a look of dementia in his eyes. Scary stuff. He’s got nothing to lose. It’s not like anyone’s going to sue him for his box of Depends.

Baby boomers will soon be moving into the wheelchair age. It won’t be long until the sidewalks are littered with ‘handicapped’ buggies. They’ll probably cause accidents, wheelchair pile-ups and SigAlerts. Wheelchair rage will undoubtedly become a common term and a major problem, with elderly folks shooting at each other with enema bags. And with crime the way it is, there will most likely be a slew of wheelchair jackings.

Still, walking is a lot of work. It’s exercise, and let’s face it, nobody likes that stuff. Don’t get me wrong, pushing a wheelchair isn’t easy, but at least you don’t get blisters on your feet. If you can go through life sitting on your #@*, I don’t see the problem. You only have to worry about flat tires, but as long as you have Cripple A, you’re good to go. So my suggestion to you is get out there to your local wheelchair dealership and get yourself a new set of wheels. Especially with gas prices the way they are, dawg, this is the ideal form of transportation. Pimp your ride? No, I say gimp your ride.

by Jeff Charlebois “Ham on a Roll”

8

ABILITY

Ty Ads

7/29/07

7:20 PM

Page 9

ABILITY 9

WheelFun728a.qxd

7/31/07

10:47 AM

Page 10

HIRE POWER

W

“

REFRESHING IDEA

I

n what some are hoping will become a trend among Fortune 500 firms, PepsiCo, which owns the Pepsi, Frito-Lay and Tropicana brands, recently visited the University of Pennsylvania to recruit students with both physical and mental disabilities, according to The Daily Pennsylvanian.

The dinner and formal presentation, sponsored by PepsiCo, was facilitated by the New York-based organization, Morris Street Partners (MSP), whose mission is to increase the number of persons with diabilties in the corporate workplace. The firm also has established a similar project with Merrill Lynch.

Active on five campuses, MSP helps companies tap talented candidates by hosting what seems like standard on-campus recruitment events, and yet are exclusively tailored to students with disabilities. Rich Donovan, who has cerebral palsy and founded MSP says, “MSP basically aims to bring students with disabilities individuals into the market economy—this is something that hasn’t been attempted before in a meaningful way.”

PepsiCo’s director of executive staffing, John Delpino, heard about Morris Street Partners through a PepsiCo executive who has a disability.

PepsiCo officials acknowledge that workers with disabilities are a “very important population and we decided to go after it,” Delpino said. He finds that those students who’ve taken advantage of the opportunities MSP has created are singing the company’s praises.

“We hope it will take hold on more college campuses, as well as in the business world,” she said. Gutowksi, a University of Pennsylvania student, who does marketing for the company on campus began working at MSP after attending one of their recruitment sessions last semester with Merrill Lynch.

“It is not about being nice, it is about being smart,” said Susan Lang, the CEO of Morris Street Partners. Though a nonprofit, MSP approaches its work from a business model, and has plans to expand its efforts to more campuses in the near future.

10

ABILITY

orkers with Disabilities: Talent for a Winning Team!” is the U.S. Department of Labor’s theme for the October 2007 National Disability Employment Awareness Month. “It captures the heart of the current administration’s New Freedom Initiative, which asserts that Americans with disabilities are an underutilized reservoir of ambition, talent and skill, ready to make great contributions in the workplace,” said Elaine L. Chao, U.S. Secretary of Labor.

Her department’s Office of Disability Employment Policy (ODEP) seeks to increase public awareness of the contributions and skills that American workers with disabilities have to offer.

“America’s employers benefit when they provide work opportunities for Americans with disabilities,” said Roy Grizzard, assistant secretary of labor for ODEP. “A winning team will include people with disabilities.”

ODEP’s 3,500 One-Stop Career Centers nationwide help build a bridge across conventional barriers to employment for individuals with disabilities. Also, collaborating with sister Labor Department agencies—the Employment and Training Administration and the Civil Rights Center–ODEP has developed a disability checklist to assist with implementation of Section 188 of the Workforce Investment Act at the local level. www.dol.gov/odep

AN OFFICER BUT NOT A GENTLEMAN

A

camera phone snapped a photograph of a Maricopa County Sheriff’s patrol car parked in an accessible space in a Cave Creek, AZ, parking lot while Jennifer Longdon, a wheelchair-user and disability advocate, had to utilize a neighboring spot. Ironically, Longdon was there to deliver a speech about accommodating people with disabilities. After confronting the perpetrating officer she received the following explanations: “It was only 15 minutes” and “the deputy was conducting official business.” Would these excuses have been sufficient to help an ordinary citizen avoid the upwards of $300 fine for such a violation?

Longdon is a volunteer, peer mentor and advocate with Arizona Bridge to Independent Living, which offers and promotes programs designed to empower people with disabilities. The organization also motivates people to take personal responsibility so that they may achieve or continue independent lifestyles within the community.

WheelFun728a.qxd

7/31/07

10:47 AM

Page 11

AFTERSHOCKS

NOT THE SAME OLD SONG

P

C

The surveys, to be completed anonymously, are intended to determine how many returning diplomats and civilian employees are suffering post-traumatic stress disorder (PTSD) or other problems as a result of exposure to a war zone. The department was prodded to act by the American Foreign Service Association, which reported that some diplomats had difficulty adjusting after leaving. Said Larry Brown, State Department director of medical services, “The department will use the survey results to decide whether it needs to change the way it prepares employees for assignments in Iraq, as well as to address any mental health problems they experience after returning.”

To celebrate the initiative, EMI hosted a ‘carbon neutral’ Grammy party last spring, in which all emissions linked to the event were offset through the purchase of clean, renewable energy. To reduce the party’s “carbon footprint,” the company worked with Native Energy, a Native American-owned energy company which helps build Native American, farmer-owned and communitybased renewable energy projects.

ost-Traumatic Stress Disorder affects a broader number of people than officials initially thought.

The State Department has found that U.S. diplomats return from Iraq with the same debilitating, stress-related symptoms that have afflicted many U.S. troops, prompting the State Department to order a mental-health survey of 1,400 employees who have completed assignments there, according to USA Today.

The war has placed deep strains on many of the 56,000 people who work around the world for the State Department, the publication went on to report. Some diplomats return home from the war with symptoms of post-traumatic stress disorder. Others say resources are being drained from posts elsewhere to cover the growing costs in Iraq, and that State Department employees have been reluctant to complain, because of a culture that emphasizes stoicism, concern about losing security clearances if they seek counseling and fears that they will be considered disloyal.

Gulf War vets suffer from real neurological illness, studies have suggested. Veterans of the first Gulf War who developed numerous health complaints have areas of the brain that are measurably smaller than those of healthier vets, according to a study presented recently at the annual meeting of the American Academy of Neurology in Boston. “The results of the U.S. government-funded study are preliminary but provide some of the first hard evidence that veterans from the 1990-1991 conflict are suffering from a real neurological illness,” according to HealthDay. Lead study researcher Roberta White of Boston University School of Public Health said, “Right now, for Gulf War veterans, there is a discounting of any physical basis for what might be wrong with them. But this brain imaging research suggests that there is a clear neurological basis for their complaints.” Dr. Daniel Clauw, professor of medicine and director of the Chronic Pain and Fatigue Research Center at the University of Michigan, called the findings “intriguing,” but stated, “they do not prove that veterans of the first Gulf War were harmed by wartime chemical exposure.” www.ncptsd.va.gov

apitol and Virgin Record’s parent company, the EMI Capitol Music Group is joining forces with the Natural Resources Defense Council (NRDC) to reduce its environmental footprint by lowering the amount of resources consumed in its product packaging, as well as in its daily business practices.

They pledged to shift to recycled materials whenever possible, and to reduce the amount of heat-trapping, global warming emissions within their operations.

“We are all empowered and compelled to be agents of positive change towards the healing of the planet,” said Jeff Kempler, who is Capitol Music Group’s COO. “What EMI did with its Grammy party is just one small measure, but an important step. We and many of our artists are dedicated to harnessing the power of music to inform and inspire people and companies everywhere to take appropriate steps to improve their environmental practices.”

Since 1970 the NRDC, a nonprofit organization of scientists, lawyers and environmental specialists, has dedicated itself to protecting public health and the environment. It works to restore the integrity of the elements that sustain life—air, land and water—and to defend endangered natural places. Moreover, it seeks to establish sustainability and good stewardship of the Earth.

In its daily practices, EMI is moving towards packaging all CDs and DVDs in materials made from post-consumer, recycled fibers, while avoiding paper made from trees harvested from any endangered forest. The company pledges not to buy paper that uses toxic mercury, or that is manufactured from timber clear-cut from the Cumberland Plateau—a unique endangered ecological habitat—that ranks among the most endangered natural places in the Americas. (The pulp and paper industry is the third greatest industrial emitter of global heating pollution, and its contribution to that serious problem is projected to double in the next 15 years).

“Endangered habitats and global warming are two of the biggest challenges we face. There are tremendous opportunities today for companies to improve their environmental stewardship and performance. We’re working to help Capitol Music Group point the way,” said NRDC Senior Scientist Dr. Allen Hershkowitz. “It is especially exciting to protect the very places in America that gave birth to blues, country and rock and roll music.”

ABILITY 11

8,12,13

7/29/07

1:17 AM

Page 12

W

hen a severe asthma attack left Teresa May De Vera with a permanent physical disability, she felt unmotivated to return to college–until she participated in Disability Mentoring Day, sponsored by the Disability Rights Legal Center’s (DRLC). The annual event brings students and job seekers, both of whom have disabilities, into workplace settings where they can learn about a range of career opportunities.

For Teresa, it was a life-transforming event: She was paired with David W. Burcham, the dean of Loyola Law School in Los Angeles, whom she shadowed throughout much of the day. Then, when Burcham was called into an urgent meeting, he put her in the capable hands of one of his law-professor colleagues, who allowed her to sit in on an afternoon lecture.

Inspired by the other students as well as the positive attention she received that day, Teresa realized that there was no reason on earth why she shouldn’t return to college as well. She re-enrolled the next semester, and went on to graduate. Now she’s completing her Master’s Degree in Theology with an emphasis in Bioethics at Loyola Marymount University, where she has become a disability-rights advocate as well.

Since it started eight years ago at the White House, Disability Mentoring Day (DMD) has grown from a tiny local event, with less than three dozen students participating, to an international happening with all 50 states and many countries around the world joining in.

During the Los Angeles-based day, the DRLC pairs 150 mentors and mentees (ages 16 years and older), so the latter can learn what it means to work in that general field or that specific job, by observing a typical workday, understanding the skills needed and learning about possible internships and employment possibilities.

For instance, last year William Grignon, a member of the DRLC’s Young Professional Board and an associate with Kirkland & Ellis, LLP, hosted 15 students at his downtown L.A. law firm. He coordinated activities among all the departments so students could experience first-hand the range of employment opportunities, from receptionist, file clerk, paralegal, associate to managing partner. The students were pleased to learn about the range of employment opportunities, while the law firm was happy to serve as host to potential future employees, and agreed to sponsor additional mentoring activities down the line.

12

ABILITY

Mentors and mentees are always encouraged to keep in touch, which can pay big dividends. Following last year’s event, for example, one of the students applied and was hired by his mentor’s company.

Studies show that mentoring is beneficial to both mentor and student. Mentees have the opportunity to gain wisdom and insight about the working world and career options, while mentors have the opportunity to share their experiences, insight and leadership with enthusiastic students. These personal connections help eliminate barriers to employment often faced by people with disabilities.

This is key because the disability community needs to be able to find and retain work that alleviates and finally eliminates poverty. As recently as 2005, the National Organization on Disability found that only 32 percent of Americans with disabilities aged 18 to 64 are working, which means two-thirds are not. Compared to the non-disabled population, three times as many in the disability community have annual household incomes below $15,000, the federal poverty line.

Each year the DRLC’s Mentoring Day begins with a kick-off breakfast and concludes with a closing-ceremony dinner, where participants describe a significant experience they had that day. We look forward to many great stories coming out of this year’s DMD on October 17, 2007.

by Paula Pearlman and John Longoria To participate as a mentee or an inspiring mentor or sponsor, please contact John Longoria, Community Outreach Director at the Disability Rights Legal Center, John.Longoria@lls.edu or (213)736-8366. www.disabilityrightslegalcenter.org

8,12,13

7/29/07

1:18 AM

Page 13

A

s executive director of the Disability Rights Legal Center (DRLC), Eve Hill has won countless battles for the disability community. But this time she gets the gold star: The Women Lawyers Association of Los Angeles (WLALA) recently honored her achievements with a Distinguished Service Award.

Nicole Bershon, the incoming president of the WLALA, recalls first meeting Hill. “I kept reading about all the groundbreaking accomplishments the DRLC was making in the name of increased access. I had to confirm with a few different people that this incredibly humble and unassuming—not to mention funny—person I was getting to know was the same legal eagle who was having all of these incredible legal victories.”

Hill’s accomplishments in the area of disability rights have produced systemic change in public accessibility, juvenile and criminal justice as well as health care.

Today, for example, thanks to her hard work, Los Angeles freeway call boxes are equipped with TTY systems and are at a height that people in wheelchairs can reach.

The activist credits the powerful model for social change of the ’50s and ’60s as an inspiration. “I thank God for the Civil Rights Movement,” Hill has said of the demonstrations and sit-ins staged by African Americans and others who sought to strike down racial segregation in this country. Hill has said that the movement emboldened people who are deaf, blind, in wheelchairs and contending with mental illness, to fight against everyday discrimination.

“Pre-1970s, people with disabilities were viewed as objects of pity and charity. They were presumed incompetent to work, to be parents, to be fully functioning members of society. They were institutionalized, given government benefits, used as poster children for charities,” said Hill.

Acknowledging she has clinical depression, Hill said that people with disabilities sought many of the same rights for which African-Americans fought. “We wanted to vote, participate in families, go to schools, and do all the things people don’t want to do, like jury service,” she said. “That all started to push us towards the Civil Rights model.”

Since Hill became DRLC executive director in 1998, the number of programs the center offers has doubled, while the size of the staff has quadrupled. She has also

spearheaded the California Respect-ABILITY Coalition, which brings together state and national leaders, organizations, advocates and virtually hundreds of people with disabilities to discuss major barriers to the disability community as well as how to address them.

Renee Wohlenhaus, the deputy chief of the Disability Rights Section of the Department of Justice, says: “Eve perseveres tirelessly and challenges everyone around her to do the same. She is a powerful combination of energy, tenacity and talent working to reframe the world view, as most people see it, in order to open possibilities for so many who are left out of the picture.”

A Maine native, Hill graduated Sweet Briar College magna cum laude. Then she graduated Cornell Law School with cum laude honors, and went on to join the Washington DC firm of Pierson, Semmes & Bemis as an associate. For five years she served at the US Department of Justice, Civil Rights Division, in disabilityrights enforcement. She implemented the ADA Mediation Program. As the alternative dispute-resolution coordinator for the Civil Rights Division, she received the prestigious John Marshall Award.

Today, Hill is galvanizing the next generation of disability-rights activists as a visiting law professor at Loyola Law School, and an adjunct professor at the University of Southern California’s School of Law. She serves on the California State Bar’s Council on Access and Fairness, and the American Bar Association’s Commission on Mental and Physical Disability Law. She is the co-chair of the U.S. Access Board’s Courthouse Accessibility Advisory Committee, and the co-author of the treatise/casebook Disability Civil Rights Law and Policy. A Durfee Foundation Stanton Fellowship recipient, she also was selected to participate in the 2006 Stanford Executive Program for Nonprofit Leaders.

Along with her deep commitment to her goals, Hill displays a facility for working closely with various organizations to find common ground. Michael Geibelson, the president of the DRLC’s board of directors says: “Eve has an intolerance for mediocrity in pursuing equal rights for people with disabilities, and yet she balances her devotion to the cause with a demonstrated ability to find the middle on issues of advocacy. As a result,” he says, “she has been very effective in finding meaningful solutions that convince businesses and public entities to stay at the table.”

ABILITY 13

8,12,13

7/29/07

1:19 AM

Page 14

Matt King and Spencer Yates show signs of a fall. The duo set a world record at the ‘96 Paralympic Games in Atlanta

M

att King believes that obstacles are opportunities in disguise. Born with retinitis pigmentosa, an incurable eye disease that gradually destroys the retina and optic nerve, he lost his sight during his freshman year at Notre Dame. Four years later, he graduated magna cum laude with a double major in electrical engineering and music. Today, he’s a tandem cycling Paralympian and enjoys a career at IBM, where he specializes in developing Internet Technology (IT) for people with disabilities.

“I made the transition into IT,” he says, “because of my desire to help solve access problems.” He’s contributing to the progress in that arena by creating accessible technologies that are built-in rather than designed as an afterthought, which is often what has been done in the past.

about his Notre Dame experience, he exclaims: “It was awesome, it was great!”

Also contributing to a great college experience was the fact that his instructors didn’t expect any less from him: “I never encountered a professor who had any notion of lowering the bar. In high school I spent more time fighting those who wanted it lowered,” said King.

During one fateful day at Notre Dame in 1995, King picked up a newsletter published by the American Council of the Blind. In the newsletter he learned of the U.S. Association of Blind Athletes and signed up for their camp because it sounded like fun. He discovered he had a natural talent, shocking the competition by emerging as a front runner in the tandem-cycling scene, eventually proving himself to be one of the best in the sport in the world.

King knows first-hand about barriers to access.

As a new college student, he not only had to master his freshman coursework, but also learn Braille. At the same time, he gave up his beloved bike—a passion from childhood—to learn to walk with white-tipped cane.

“

He competed in the Paralympics in Atlanta, GA, in 1996, in Sydney, Australia, in 2000 and in Athens, Greece, in 2004, leaving in his wake a collection of world records, medals and titles: His success confirmed his realization that the biggest mistake you can make is to stay away from something because of a disability.

Finding his path unpaved, he coor...the biggest mistake dinated a community of support King first discovered his love for bikthat helped keep him on track you can make is to stay ing at only five years old. A constant throughout his academic career. away from something companion during his youth, his bike He organized a paid team to provided transportation as well as a make sure he had all the scholasbecause of a disability. means to do his first job, a paper route. He tic materials he needed to succeed. says he always tried to keep to the speed limit, He even designed a makeshift recording but still remembers the day when he was 17 and rearstudio for Team King to record his reading assignments ended a car carrying one of the most popular girls from for him—a personal library of “books on tape.” high school.

Sounds like double the work, but when you ask King ABILITY

“

14

8,12,13

7/29/07

3:05 PM

Page 15

Today, King is passionate about motivational speaking. He talks to students, service organizations and corporations around the country. He is also actively involved in mentoring children at the Colorado School for the Deaf and the Blind and through IBM’s MentorPlace program. He believes that if children grow up with an attitude that a disability is a challenge instead of a roadblock, they will be happier and more successful adults.

During one of King’s mentoring experiences, a nineyear-old girl asked him if it was hard being blind.

He responded: This is a good question, and I hope I can answer it in a way that will make sense to you. Even though it’s not easy to explain being blind, I think it is very important that I do try and help people understand. If more people understood what I am about to explain to you, life for blind people would be much easier.

of circumstances whether it was something mundane like reading product packaging in a store or more exciting like helping me figure out how to navigate our dirt bike through a particularly dark section of woods. In the winter, when daylight was short, he took over the responsibility of delivering the papers on our shared newspaper route.”

Throughout his life when blindness has presented a new obstacle, he’s been determined to clear the hurdle. From staying on a bike to learning Braille to creating equal access as an IBM accessibility, end-user advocate, he’s held the course. His IBM job is physically located in New York, but meeting another challenge to train for the 2000 Paralympic Games at the U.S. Olympic Training Center in Colorado Springs, the company allowed him to live and work in Colorado where he’s been since.

At home, King says that being blind isn’t a huge factor in his role as a father, either. “I don’t think my challenges as a parent are very different from the typical parent. Like any couple, my wife and I divide responsibilities along many different lines, depending on our various strengths. For example,” he jokes, “I don’t drive.”

In everyday life, I do not think about being blind very much at all. It is sort of like how most people don’t think very often about the color of their skin or hair. They just are who they are and that is that. But, once in a while, it is difficult. Once in a while, a new obstacle pops up

by Lisa Wells because I am blind. When that happens, though, I don’t get mad about being blind. I just treat the obstacles like www.thekinglink.com any other challenge in my life. It is like when you have a problem reaching someThe King family L to R: daughter Lavyn, Matt, family’s best friend Sadie, son Spencer and Kim thing because you are not as tall as adults.

You probably don’t get mad about being short, right? You start looking around for a way to reach what you want.

King currently lives in Colorado Springs with his wife, Kim, and his two children, Lavyn, five, and Spencer, two. As a child, growing up in Centralia, Washington— about an hour and a half south of Seattle— he recalls that his parents treated him no differently than his other five siblings.

“My parents did a great favor for me by not protecting me. They let me fail and work through problems,” King said, adding, “I didn’t focus on what I couldn’t do.”

But as a teenager, King found blindness very difficult to handle. He couldn’t walk by himself at night or in dim lighting, he couldn’t read normal print without bright lights and magnification. He also faced the ridicule of schoolmates who used names like “blindo” and “klutz,” which didn’t help. But he was lucky to have the constant support and help of his younger brother, Steve, whom he relied on for back-up eyesight. “We were constant companions. He’d pick up where my eyes left off in all kinds 15

ABILITY

ABILITY 15

YogaMS730.qxd

7/30/07

10:36 PM

Page 16

T

he first article I read about Multiple Sclerosis (MS) contained pictures of Erik Small doing yoga poses. The article lit a fire inside of me because it described how yoga had helped him in so many ways.

As a yoga instructor, I wondered how much I could help a group of students with MS. As I walked into my first class, I was a little intimidated. I had never taught yoga to someone using a wheelchair or to someone who couldn’t use one side of his body. MS, an inflammatory and autoimmune disease, attacks the central nervous system—the brain and spinal cord. Composed of nerve cells which transmit electrical impulses, the central nervous system’s sheath gets damaged or destroyed. The full course of this degenerative disease may take 20-30 years, depending on the form.

Yet I was committed to my goal: If Small could see results, so should my students. My first class had 12 students; my second had two. What had I done wrong, I wondered? My intentions were good. My two remaining students informed me that my first class was, well, too exhausting. So I went back to the drawing board.

I looked up everything I could find on the subject of yoga and MS. Unfortunately yoga books and articles on MS are not as common as, say, treatises on lower back pain. In the average teacher training, yoga instructors are not taught how to design a class for people with MS. So for the next few weeks I listened to the needs of my students, and together we designed a class that was suited for everyone. I noted their weaknesses and their strengths. I listened as they described how they were feeling on that particular day or week. By paying attention to my students’ physical and mental states, I would adjust my class accordingly. I learned more by teaching my students than what I found in books.

Reclining leg stretches, spinal stretches and twists are always included in my class. These are ideal poses as they can be done on the floor easily without having to stand. Spinal twists are important to get movement of the spine as well as to stretch and strengthen the upper and lower body.

16

ABILITY

For balancing, I have my students move from lying on the floor to up on all four. I then have them start slowly, extending one leg at a time while balancing on two arms and one leg. While keeping their focus on breathing, we build endurance and concentration. If at any time my students feel wobbly, I have them use either the wall or a chair for extra support. I include several modifications to each pose and encourage each student to find the pose that feels right. Sometimes straps and blocks help with this. In addition I have my students work on strengthening their feet and ankles. From a seated position I will give them a cup of marbles and have them use their toes Generalized Symptom of MS Approximately 50 percent of cases involve these: • Visual symptoms, such as blurred vision, visual field defects and color vision defects.

• Loss of the ability to turn the eyes laterally • Nausea, vomiting, deafness, facial muscle weakness or sensory loss and double vision or eye pain caused by cranial nerve involvement.

• Decreased short-term memory, word finding problem and decreased concentration.

Symptoms of Spinal MS • Weakness or numbness in one or more of the limbs • Easily fatigued as a result of minor activity • Jerky spastic weakness of the legs • Bladder dysfunction and less frequently, bowel dysfunction • Tingling of the extremities, usually legs and feet Cerbellar MS (affecting the coordination and move ment center of the brain) • Slurred speech • Inability to perform coordinated movements of the arms and legs (ataxia) • Jerky movements of the eyes

YogaMS730.qxd

7/30/07

10:38 PM

Page 17

to pick them up and place them in the cup. This is very helpful in getting mobility in their feet and ankles, which helps with walking and balance, which contributes to overall confidence.

“Since I started yoga 18 months ago, I have noticed improvement in several areas,” says Michelle Love, 38, diagnosed with MS four years ago. “My balance is better, and I am less prone to falls. I am more flexible, especially in the back. My neurologist has especially noticed an improvement in my arm strength. Leg stiffness can be a problem for MS patients and the stretching and stengthening we do in yoga has helped my legs a lot.”

don’t do as well when I am not participating in it. I highly recommended this exercise for all of us!”

As you can see there are a lot of variables to take into consideration when planning a yoga class for students with MS. I always ask my students where they are that day, and how they are feeling. I take my cue from them.

Over time, we were transformed into a support group where everyone can talk about what they’re experiencing.

The class has become a place where individual spirits are lifted and everyone progresses together. My intention with the class went from making them better at yoga to simply increasing the gifts and strengths they already have inside.

At the end of the hour-long class I have my students lie down in a comfortable position (savasana). From this position I teach various breathing and relaxation techniques. The final relaxation is very important to allow the student to absorb the benefits of their yoga practice and to help calm their central nervous system. Dr. Junella Chin, D.O., describes the benefits of yoga for those with MS. “Disease is the result of the relationship between anatomical structure and physiological function,” she says. “A normally functioning musculoskeletal system plays an important role in wellness, disease prevention and recovery. Yoga therapy helps to restore health, structure and overall improved quality of life for people with Multiple Sclerosis.”

by Simone Hoppe

Patty Woolsey, 50, first diagnosed in 1994, agrees. “I have seen tremendous results with yoga,” she says. “I Simone’s MS yoga class

ABILITY 17

YogaMS730.qxd

7/30/07

10:39 PM

Page 18

I

t’s one of the most profitable crops in the United States and its beans morph into a grocery list of items including milk, flour, oil, protein and more. Highly valuable, it brings in billions of export dollars to the nation’s economy. Yet while anything green seems to get the thumbs up these days, not everyone is singing soy’s praises.

There have been rising concerns around the type of soybeans we consume. The United States Department of Agriculture [USDA] reported that approximately 90 percent of the soybeans grown in the U.S. are genetically modified, as is a high percentage of the corn we consume and the cotton we wear.

To create genetically modified soy, scientists splice a gene from bacteria and introduce it into a soybean seed. This fortified seed is able to grow, even when sprayed with potent pesticides.

Some worry that the residue of those pesticides will live on in the cells of our bodies and come back to haunt us in the form of cancer and other serious illnesses. There is also concern that there’s no separation between “church and state”: The chemical companies that manufacture the herbicides also sell the genetically modified seeds for the soy, corn and cotton crops, cashing in on both ends of the production line. On the other hand, organic soy is grown not only without use of conventional pesticides, but also without artificial fertilizers or sewage sludge, both of which are sometimes used in non-organic farming.

Dr. Michael Duffy, professor of the Agricultural Economics and Environmental Resource Economics at Iowa State University, has studied the differences between organic soybeans and their genetically modified counterparts. He’s identified slight 18

ABILITY

YogaMS730.qxd

7/30/07

10:39 PM

Page 19

differences in production of the two. Though genetically modified crops are becoming the industry norm, Duffy suggests that the organic beans grow just as well, and can match the yield of their GM cousins. So he says, “If there’s no difference in the returns, why are there different levels of adoption? The reason is because harvesting and handling a GM crop is so much easier for farmers.”

It doesn’t have to do with the yield or the health factors, he said, it’s just the time and effort. “That’s why we’ve found such a rapid adoption [of genetically modified soybean crops],” he added.

Across the pond, the European Union [EU] has banned genetically modified foods for health and cultural reasons. Europe has a history of choosing organic products, as well as a reputation for exceptional culinary achievement, which many feel would be cheapened by the use of genetically modified foods. Only small amounts of the altered soy can be found in Britain’s food supply, whereas GM products are widely eaten in the U.S. Many ask, if the EU has said “no” to these products, why do Americans continue to produce and consume them? In part, because the Food and Drug Administration [FDA] and/or the United States Dietary Association [USDA] don’t require supermarkets to label genetically modified foods, so we often buy them without knowing exactly what we’re taking home in our shopping bags.

Irina Ermakova, a leading scientist at the Institute of Higher Nervous Activity and Neurophysiology of the Russian Academy of Sciences (RAS), believes there’s

reason for concern. In lab tests on rats, she fed some of the animals only GM soy products, while others were fed only non-GM foods. Testing began just two weeks before the rats were impregnated. When the baby rats came along, those whose mothers had been fed GM foods showed signs of growth problems and remained stunted, compared to those whose mothers had been fed only natural foods. In addition, over half of the GM-fed offspring died within three weeks.

While many argue this study is inconclusive, it left many environmentalists and health-conscious people questioning the lack of FDA requirements for testing the safety of GM foods. A biotech company can assure the FDA that a product is safe without ever having to prove it. Early on, the FDA defended its position on GM foods in a 1992 policy that stated: “The agency is not aware of any information showing that foods derived by these new methods differ from other foods in any meaningful or uniform way.” But some say the FDA hasn’t bothered to dig very deep into the issue. In recent years, there have been fewer than 20 published studies regarding the impact of GM products on animals and none on their effects on humans, even though we eat them every day.

Despite skepticisim from some, Barbara P. Klein, PhD, believes, “It is very unfortunate that when we started genetically modifying foods, we didn’t make the public well informed of the benefits.” Professor at Illinois State University, and director of the Illinois ABILITY 19

YogaMS730.qxd

7/30/07

10:59 PM

Page 20

Center for Soy Foods, Klein stated, “As far as human health goes, and consuming genetically modified foods is concerned, I am very comfortable. Where we need to be much more careful in the future is environmental consequences [with production of genetically modified crops],” added Klein, who’s PhD is in nutrition.

Mark Messina, PhD, doesn’t think GM’s anything to be alarmed about either. “To be honest, I don’t think [genetically modified soy] is a nutritional issue,” he says. He belongs to the United Soybean Board’s Speakers Bureau of Research. Messina, who’s PhD is in nutrition, as well, goes on to say, “I think people have far more important issues to contend with than purchasing organic or GM soy.” According to the doctor nearly 90 percent of the genetically modified soy grown in the US is used to feed animals, not humans. “If a consumer wants to choose a non-GM, they have a choice,” he said. Messina also noted that Silk, the most recognized manufacturer of soymilk, along with many other mainstream soy products, actually use non-genetically modified beans to create their products.

Other areas of concern include unfermented soybeans— processed into fresh tofu or soymilk—which are said to contain toxins that block the enzymes needed for us to digest protein. While scientific studies, mentioned by Dr. Andrew Weil, author of Spontaneous Healing and 8 Weeks to Optimum Health, have shown that these toxins can contribute to pancreatic enlargement, cancer and stunted growth in animals, there has been no testing to evaluate the effect on humans.

Isoflavones found in soy act as estrogen in the female body. It was once believed that the isoflavones in the soy raised the presence of estrogen to levels dangerous enough to cause breast cancer. Weil agrees that, theoretically, isolated isoflavones acting as artificial estrogen, could stimulate the growth of cancer in women, but that it is unlikely.

In fact, the National Cancer Institute and National Institutes of Health have found just the opposite: Isoflavones’ chemical structure is much like that of our own estrogen and, because of the similarity in structure, they can actually interfere with the destructive action of our own hormones, and thereby decrease the health risks of excess estrogen. The rates of breast cancer in Japanese women are one fifth of that of U.S. women, and many believe it is because the Japanese diet consists of large amounts of soy. Research has actually shown that increased amounts of isoflavones can suppress a woman’s natural estrogen levels, reducing the risks of breast cancer. Isoflavones are also credited with taming menopausal and pre-menstrual symptoms. Many physicians recommend women consume 1-2 servings of soy per day, even those with breast cancer. “Milk” derived from soy in particular, is considered beneficial for women and men, due to its higher levels of protein and fiber as compared to regular cow’s milk.

20

ABILITY

The FDA has not evaluated appropriate doses of isoflavones, nor do they acknowledge claimed benefits.

Supporters of soy isoflavones, that include nutritionists and various physicians throughout the world, recommend 1-2 servings a day, or no more than 100 mg a day.

Messina added, “There is no evidence that excessive amounts [of isoflavones] are harmful. Historically few people in Japan have consumed more than 100 mg a day. So in the absence of any other kind of data, I generally use the upper limit of 100 mg. Clinical trials have actually used much larger doses and not seen any kind of negative effects.”

Even so, some argue that consuming large amounts of isoflavones has been known to trigger a thyroid condition—if one has a pre-existing condition. Additionally, soy isoflavones could potentially affect thyroid function if one’s system has low levels of iodine. This condition is rare in the U.S. due to high levels of iodine in dairy, fruits, eggs and some vegetables.

While questions linger about how healthful soy actually is, the soybean itself continues to struggle as a crop.

Currently Florida, Texas, Louisiana and other soybean crops in rural areas worldwide are suffering from soybean rust, a disease caused by two different types of fungi. Once infected, the leaves develop brown spots, may show signs of bacteria and mildew. Unless proper precautions are taken, the crops will die. But this condition might lead to the introduction of even more fungicides, the residue of which can cling to the bean throughout the production process.

Recently the state of New York joined Florida, Texas, and California to draft a letter that focuses on the four states’ agricultural priorities to be considered as a part of the 2007 Farm Bill. The letter reads, in part, “We support provisions that expand support for organic products allowing our farmers to access this growing and lucrative market. To meet this increasing consumer demand for organic food, we should support farmers who have decided to use organic techniques, especially those who are transitioning to organic agriculture.”

Given the power of the pocketbook, consumers, such as Kristen Thomas, may ultimately have the last word.

“I avoid GM foods as much as possible,” she says, “as I believe there’s a danger any time one tinkers with nature. I just play it as safe as I can and make sure all of the produce I purchase is organic and/or locally grown.

It’s not a sure bet, but it’s the best I can do.”

by Sonnie Gutierrez www.talksoy.com www.unitedsoybean.org

8,12,13

7/29/07

1:21 AM

Page 21

s ge a nP ee r G

H

ow many times have you found yourself staring vacantly at a yogurt tub, dry cleaner bag or empty bottle of salad dressing and thinking, “Hmmm… Can this go in the recycling bin?” I know I’ve been confused by what to do with the various plastics used in food and household products. Which ones are considered recyclable? Well, the definitive answer is: It depends.

The type of plastic determines whether it’s commonly recyclable or more likely to end up adding to our overburdened landfills. Another factor is your city’s waste management practices.

For sanity’s sake, let’s start by sorting out the range of plastics and how they differ:

PLASTIC NO. 1: POLYETHYLENE TEREPHTHALATE (PETE) Initial uses: This product becomes the bottles for softdrinks, juice, water, beer, vegetable oil and mouthwash, as well as containers for peanut butter and salad dressing. It is the most widely recycled plastic and often has redemption value in some states.

Recycled, it later takes on many different after lives, such as containers for food, fiber-tote bags, fabric, athletic shoes, luggage, upholstery, furniture, carpet, automotive parts as well as fiberfill for both sleeping bags and winter coats.

PLASTIC NO. 2: HIGH-DENSITY POLYETHYLENE (HDPE) Initial uses: Containers that hold milk, bottles for juice, water, motor oil, bleach, detergent, household cleaner and shampoo, trash bags, grocery and retail-carrying bags and cereal-box liners. Occasionally, HDPE is used

to make butter and margarine tubs, and yogurt and cottage cheese containers.

The second time around the product becomes: Drainage pipe, oil and liquid laundry detergent bottles, pens, benches, doghouses, recycling receptacles, floor tile, picnic tables, fencing, lumber and mailbox posts.

PLASTIC NO. 3: POLYVINYL CHLORIDE (PVC) Initial uses: Window cleaner bottles, cooking oil, liquiddetergent and shampoo bottles, clear food packaging, shrink wrap, wire cable jacketing and medical tubing.

PVC is also found in household products and building materials, particularly siding, piping and windows.

Recycled they become plastic binders, decking, paneling, mudflaps, roadway gutters, flooring, cables, speed bumps and mats.

PLASTIC NO. 4: LOW-DENSITY POLYETHYLENE (LDPE) Initial uses: Bags for bread, frozen food, dry cleaning and produce, trash can liners, squeeze bottles and foodstorage containers. Note: Plastic grocery bags, which are usually manufactured from HDPE (No. 2) and LDPE (No. 4), are generally not accepted for recycling curbside (check with your local waste-management company). However, many grocery chains including Safeway, Lucky, Albertson’s, Raley’s, Ralphs and G&G accept these bags for recycling.

Round two they come out swinging as: Plastic film and sheeting, garbage can liners, shipping envelopes, compost bins, furniture, paneling, floor tile, trash cans, lumber and landscaping ties.

ABILITY 21

7/31/07

1:42 PM

Page 22

PLASTIC NO. 5: POLYPROPYLENE (PP) Initial uses: Bottle caps, drinking straws, yogurt and cottage cheese containers, butter and margarine tubs and bottles for medicines, ketchup or syrup. Recycling centers almost never take No. 5 plastic (but double-check, just to make sure).

They’re reincarnated as signal lights, battery cables, plates and utensils, razors, brushes and brooms, autobattery cases, ice scrapers, landscape borders, bicycle racks, rakes, plastic bins, pallets and trays.

PLASTIC NO. 6: POLYSTYRENE (PS)

“

Other companies, such as Nancy’s Yogurt uses No. 2 plastics. However, Nancy’s encourages reuse of its containers. If you end up with a backlog of used containers you can send them back to Nancy’s and the company will make sure they’re recycled.

It’s important to the future of our planet that we take a few minutes to call and find out what our city and local recycling programs accept a k a Sty-

Initial uses: Packaging pellets rofoam peanuts, cups, plastic tableware, meat trays, restaurants’ clam-shell style, to-go containers, egg cartons, aspirin bottles and CD jackets. While very few recycling programs accept No. 6 plastics, many shipping stores do, so ask around.

They make a comeback as thermal insulation, light switch plates, vents, rulers, foam packing, egg cartons and carry-out containers.

PLASTIC NO. 7: OTHER

So what’s the takeaway from all this?

It’s important to the future of our planet that we take a few minutes to find out what our city and local recycling programs accept. They may even have a chart, which they can send you. Also, it’s important to shop smart by examining the packaging of the products you buy. Avoid plastic and other petroleumbased packaging because they are harder to recycle. And if one of your favorite companies doesn’t offer No. 2 packaging or the option to return that packaging for recycling, write them and tell them to get on the stick!

Lastly, if your city’s recycling program is limited to only one or two items, contact them to find out why and put pressure on them to expand it.

by Kristen McCarthy Thomas

The category “Other” includes any resin not specifically numbered “1-6” or combinations of one or more of these resins.

www.fixingtheplanet.com www.just2hands.blogspot.com

Initial uses: Three and five gallon water bottles and certain kinds of food containers, including Tupperware. I haven’t seen a recycling program yet that accepts these.

Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern CA. She leads the company’s Environmental and Sustainability Task Forces and helps both employees and management “green up.”

They’re recycled as plastic lumber and custom-made products.

THE PROBLEM CHILD? Most programs accept plastics No. 1 through No. 4, while few to none take No. 6 and No. 7. But what about No. 5? It’s considered the problem child. Made of polypropylene, it’s viewed as too labor intensive and costly to be of interest to most companies. So does that make No. 5 plastics evil?

Oddly enough, no. No. 5 plastics are more durable and much lighter than their peers, which makes them easier and more environmentally friendly to transport.

Yogurt manufacturer Stonyfield Farms has performed oodles of on-site research, which led them to use No. 5 over more recycle-friendly No. 2. In addition, the company encourages consumers to send in used (but 22

clean, please) containers to be turned into preserve products—from tableware (which I love) to razors and toothbrushes.

“

Recycle730.qxd

ABILITY

Currently at work on a book on how parents can reduce their family’s environmental footprint through inexpensive, easy-to-understand measures, Kristen intends to pass the torch of environmentalism to the next generation by word and deed.

Ty Ads

7/29/07

7:21 PM

Page 23

ABILITY 23

7/29/07

1:36 AM

Page 24

L to R: Jamie, Chet and Tyler showing off for the camera

8,12,13

C

ancer can be fought in many ways—with surgery, radiation, chemotherapy, etc.—but Jamie Schubert decided to add motocross. Whooping cancer isn’t just a question of battling the disease—it’s about making positive choices. Motocross riding keeps Jamie’s spirits up, and so does his decision to spend quality time with his 14-year-old Supercross-hopeful son, Tyler. And with that Jamie feels he’s winning.

Our editor-in-chief, Chet Cooper, recently donned the requisite dirt biker’s gear, dusted off his Honda and met up with the father-and-son riding duo in Riverside, California. Their dirt-filled interview, held at Milestone MX Ranch, was all fired-up with a flurry of jumps, pinned turns and whoop-dedoos.

Chet Cooper: How long have you lived in California?

Jamie Schubert: I’m a native. I was born in Newport Beach and raised in Huntington Beach. My mom graduated from Huntington High. She became a deputy clerk for the city. My dad worked for Bell Helicopters and set up the first police helicopter outfit in the area.

He left Huntington soon after that. Now he’s 74 and he lives on the river. He continues to fly planes and still has his FAA license. When I was a kid, he used to say,

24

ABILITY

‘Let’s go fishing,’ and we’d fly down to Mexico and land on the beach. In the’60s, you could do things like that. Not any more.

Cooper: So you had a lot of experience with planes growing up. How did you become interested in motorcycles?

Schubert: They’ve always intrigued me. Everyone in my neighborhood had a motorcycle. I always wanted a dirt bike when I was kid but my parents wouldn’t let me have one. They bought me a guitar instead. Actually, it was part of a deal I made with my mom. If I took a summer school math class, she said she’d pay for any other class I wanted. I chose guitar lessons. So, I got a guitar instead of a bike, and it took me a different direction. I grew my hair long and went to Hollywood. I spent ten years there, playing the Strip.

Cooper: Did you play with any band we might know?

Schubert: Have you heard of Polkeralis or High Voltage? Or what about Mud Pie? We got to play at a lot of big clubs like Gazzari’s and the Country Club. I still have a really funny video from those days. It was the’80s. Big hair and Spandex—the whole nine yards...

It’s pretty funny to watch it now. (laughs)

8,12,13

7/29/07

1:37 AM

Page 25

Cooper: Like the original MTV? Schubert: Yeah, it was around’79—I did my first LA show at Gazzari’s back in’79. (laughs) Back then, that type of music was considered heavy metal. But when my son, Tyler, was born and I decided to give up the music scene. Going out to nightclubs every night or being constantly on the road isn’t a good family thing. I wanted to do something different.

My wife and I started becoming really active in our church. One day, I was coming out of church, and I heard a few guys talking about Honda Valley and how they wanted to play out there. It was also where they went to ride dirt bikes. That’s when the light bulb went off in my head. So I bought a’77 RMZ 250 for a hundred dollars and started to rebuild it out of spare parts, but I had to be taught a lot.

Cooper: Who taught you?

Schubert: The owner of the local bike shop. He taught me everything from mixing gas to cleaning the carburetor. That’s how I got started in the business. It’s my real passion. You might say I’ve got the bug bad.

Cooper: So you went from rock and roll and heavy metal to riding over rocks with heavy metal? Sorry...

Schubert: (laughs) Right. It took about six years and then we were able to open JTS Motor Sports. Two weeks after we opened the store, we found out I had cancer.

Cooper: What were your symptoms?

Schubert: It was strange. I started noticing lumps and the doctor told me that they were simply fatty tissues.

The specialist also insisted that I had nothing to worry about. When I mentioned having frequent pains in my side, he said ‘There’s no pain associated with this type of thing. It’s unrelated.’

Tyler pinning a turn

I believed him. He’s the surgeon, right? He’s a specialist and he’s supposed to be the expert. After my first surgery, I told my wife, ‘I don’t think all the lumps are gone. I think they’ve missed something.’

Cooper: Why did you feel that way?

Schubert: The sharp pains I’d been nagging about since the very beginning were still there. When I went back to the specialist, he told me it was just scar tissue and that there was no reason to worry.

Eight months later, I told my wife, ‘Honey, there’s a problem.’By that time, the lump on my side had become as big as a grapefruit. I visited my doctor again who sent me to yet another specialist. She examined the swelling and said, ‘Well, I can’t do anything for you because I don’t operate on cancer.’ That’s how I found out I had cancer. Nobody had a clue.

Cooper: Didn’t they test the lumps after they removed them?

Bottom: Chet Cooper interviewing Jamie Schubert before they take a ride

ABILITY 25

8,12,13

7/29/07

1:38 AM

Page 26

Schubert: Well, supposedly, yes. But I remember having pointed to another one that they neglected to remove. ‘It’s right here,’ I said. My doctor felt the lump and told me it was just more fatty tissue and that I shouldn’t worry. To be honest with you, he treated me like an idiot. I just wanted somebody to explain what was happening to me. He really talked down to me as if I were completely ignorant. He never did a biopsy, never had an x-ray taken—never did anything.

Cooper: He said the lumps were fatty tissue? And what did he say caused the tissue to develop?

Schubert: Supposedly it was just a freak thing. The fact that I had pains in the same area was simply a coincidence. He was the doctor and I was the knucklehead.

When the lump became too enormous to ignore, that second specialist finally said, ‘It’s cancer,’ and that’s how my wife and I found out. We left the doctor’s office and sat in the parking lot and cried. Then we gathered our strength together. We were determined to find a way to deal with it. On the Thursday after that appointment, they confirmed the type of cancer I had. The Tuesday after that, they operated. There was no time to waste.

Cooper: What kind of cancer was it?

Schubert: It’s called ‘Synovial sarcoma.’ It’s extremely rare. Less than two percent of all cases are this type of cancer. They had to send it to Italy to be examined.

Nobody here knew anything about it. Once they did the biopsy, the doctors confirmed that we were dealing with a very dangerous type of cancer. It attacks soft tissue and it’s fatal for more than 50 percent of those diagnosed. In the worst-case scenario, it spreads to the lungs.

After the operation, I underwent radiation for three months—five days a week, 45 minutes a day. The lump was attached to my pelvis so they removed all my muscle from my hip, all the way to the pelvic bone. Their goal was to wrap around the cancer and eliminate it entirely.

I’ve had a check-up every three months since I finished radiation. During my first check-up, they found that the cancer had, in fact, spread to my lungs. The full-body scan confirmed the worst. The cancer was going for the soft tissue.

Cooper: When did you have the surgery?

Schubert: My initial surgery was in November 2005. I’ve managed to ruin every Christmas for the last three years because of surgery. Not to mention a broken collarbone from a motocross accident—but that’s a different story.

I get checked every three months. At my first check-up, they confirmed that the cancer spanned fifteen centimeters. It was back and had doubled in size—spreading onto my other lung in two different spots. Now, it’s grown to 19 centimeters.

Cooper: They left it in there?

Schubert: Oh, yeah. ‘We’re not going to go in every couple of months and take pieces out of you,’ they said.

The healing process is just too hard. Healing from lung surgery is a big deal. It was worse than when they took the lump out of my side. I had a hospital bed delivered to my house so I wouldn’t have to go up and down stairs. Just the breathing exercises were hard work.

Cooper: So when did they say you had 18 months to live?

Schubert: At my last checkup. If it keeps going at this pace, I have about a year and a half until I have to depend on hospice care. Nobody can determine what will happen after hospice.

Cooper: How many times a week are you riding?

Schubert: I used to ride at least three times a week, but now it’s gotten to where I’m riding once or twice week, and I’m OK with that. I’ll ride tomorrow morning for a little bit. I used to go out there and do three or four 25 to 30-minute motos and not even blink an eye.

Cooper: So are we ready to ride?

Schubert: Let’s go...

(The three go for laps on the vet track and then head over to the main track – then back to sit in the shade of the trees to finish the interview.)

Cooper: You kicked my butt out there. You had loads of energy. It was unbelievable. Not that I’m in shape...

Cooper: Did they confirm this by means of a CAT scan?

Schubert: Yes. They make you drink that funky stuff.

You can feel the liquid entering your body, from head to toe. It’s a really warm sensation. The nurse warns you by saying that it will feel like you’re urinating on yourself even when you aren’t. Once the liquid enters your system, doctors have 30 seconds to complete the procedure. Thanks to this test, they confirmed that a piece of my lung had to be removed. Eight centimeters to be exact. They called it a wedge piece.

26

ABILITY

Schubert: (laughs) Yeah, I was able to do a lot of laps, and I felt good. At home, I walk up the stairs and I get winded! I’ve got to catch my breath walking up the stairs! But on my bike, it’s a different story. I don’t know if it’s just a question of where my head’s at when I’m on my bike—but I do have extra energy. (laughs) Yet, I walk up the stairs and I start huffing and puffing!

Cooper: What other strategies do you use for dealing with cancer?

8,12,13

7/29/07

1:39 AM

Page 27

Schubert: Just keeping active, riding and staying positive. That’s what’s been the best thing for my family and me. For a while, I had to quit answering my phone. A lot of people love you and wish you the best, but I couldn’t handle everyone crying all the time.

I would say, ‘You’re bumming me out.

Hey, I love you and thank you for your appreciation, but your crying is making me feel bad. Come out and ride with me! Come out and have some fun with me!’

I believe everything happens for a reason. We’re here on this earth for the blink of an eye. I truly believe the reason we’re put on this earth is to see how we can learn to treat each other—how we can inspire each other. That’s Jamie, in blue, why we’re here. It will also determine where we go later. riding with Tyler The real question is ‘What kind of a person are you?’ scared me. You know I talk to everybody I meet. That’s just the way I deal it’s bad when they say ‘yes’ to with it. I just try to stay positive and ride as much as you. (laughs) possible. I have as much fun as I can. Other people can curl up in a ball and run from it. I think you’ve got to Cooper: When they don’t argue with you? meet cancer head-on and keep a positive attitude. The key is to never give up. As soon as you start saying, Schubert: When they don’t contest your request and your ‘Man, I’ve got the cancer and it’s eating me up,’ that’s doctor says, ‘Yes, it’s terminal. He just wants to spend when it’s really going to start eating you up. I’m not time with his boy.’ That’s when it gets really scary. ignoring it. I know that it’s there, but it’s not going to stop me from doing what I love.

Cooper: Some reality setting in?

And now the cancer is growing slower, and I think it’s because of this, you know, riding every chance I get. I never wanted to go on chemo. I like my plan much better!

Cooper: What is your most urgent goal?

Schubert: I want to teach my son to be an honest man— a man of integrity. That’s my biggest goal. The other day, the two of us went to the track with only one bike.

At that track you are supposed to pay by the rider, even if you are sharing a bike. To be honest, I didn’t feel like paying the 50 dollars. But my son looked at me and said, ‘Dad, maybe we’re being tested to see if we’re going to be men of integrity right now.’ And I thought, ‘Man! He’s getting it!’

I want to be a good example for him. You’ve got to make the most of every moment. I’m going to keep doing what I love doing. I feel good, and as long as I feel good...

Cooper: And doggone it, you look good.

Schubert: (laughs) Like I said, I feel good, you know?

My son really wants to do Supercross. That’s his dream.

So I said, ‘Okay, the time that you’ve got me around— let’s spend it at the track.’ So we go to the track three or four days a week. And my wife—bless her heart—she’s my rock. She’s allowed me to retire and do this. Actually, when I went in for my Social Security, it kind of

Schubert: Yeah, and it sets in all the time. Like when it hurts taking a deep breath or when I get easily winded...

Some things do bother me. If I watch a movie about a guy and his grandkids, it will make me think about how much I wish I could be at my son’s wedding. Or about how much I’d like to know my grandkids.

Things like that hit me hard every now and then. It’s tough to look around and know that I won’t be around to experience certain things. My son is an aspiring Supercross rider, and I’m doing everything I can to help him achieve his goals.

Cooper: Is he going to ride Kawasaki?

Schubert: He loves his bike. But he’s going to ride whatever bike they want to offer us. (laughs) That’s the thing. This sport is fantastic—but it’s not cheap. That’s one of the reasons I opened JTS, to help provide parts and services.

But Tyler’s a good kid, and he trains hard. The boy he practices with is a top intermediate rider in the Nationals. His name is Brandon Brady. He’ll probably turn pro next year. Tyler is training hard and Brandon will help get him up there. His family has been really good to us.

We help each other out—motocross families helping motocross families.

ABILITY 27

8,12,13

7/29/07

1:39 AM

Page 28

Synovial Sarcoma: Questions and Answers 1. WHAT IS SYNOVIAL SARCOMA? Synovial sarcoma is a type of soft tissue sarcoma. Soft tissue sarcomas are cancers of the muscle, fat, fibrous tissue, blood vessels, or other supporting tissue of the body, including synovial tissue. Synovial tissue lines the cavities of joints, such as the knee or elbow, tendons (tissues that connect muscle to bone), and bursae (fluid-filled, cushioning sacs in the spaces between tendons, ligaments, and bones). Although synovial sarcoma does not have a clearly defined cause, genetic factors are believed to influence the development of this disease.

2. HOW OFTEN DOES SYNOVIAL SARCOMA OCCUR? Synovial sarcoma is rare. It accounts for between 5 and 10 percent of the approximately 10,000 new soft tissue sarcomas reported each year. Synovial sarcoma occurs mostly in young adults, with a median age of 26.5. Approximately 30 percent of patients with synovial sarcoma are younger than 20. This disease occurs more often in men than in women.

3. WHERE DOES SYNOVIAL SARCOMA DEVELOP? About 50 percent of synovial sarcomas develop in the legs, especially the knees. The second most common location is the arms. Less frequently, the disease develops in the trunk, head and neck region, or the abdomen. It is common for synovial cancer to recur, usually within the first two years after treatment. Half of the cases of synovial sarcoma metastasize (spread to other areas of the body) to the lungs, lymph nodes, or bone marrow.

4. WHAT ARE THE SYMPTOMS OF SYNOVIAL SARCOMA? Synovial sarcoma is a slow-growing tumor. Because it grows slowly, a person may not have or notice symptoms for some time, resulting in a delay in diagnosis. The most common symptoms of synovial sarcoma are swelling or a mass that may be tender or painful. The tumor may limit range of motion or press against nerves and cause numbness. The symptoms of synovial sarcoma can be mistaken for those of inflammation of the joints, the bursae, or synovial tissue. These noncancerous conditions are called arthritis, bursitis, and synovitis, respectively.

5. HOW IS SYNOVIAL SARCOMA DIAGNOSED? The doctor may use the following procedures and tests to diagnose synovial sarcoma: Biopsy: Tissue is removed for examination under a microscope.

Immunohistochemical analysis: Tumor tissue is tested for certain antigen and antibody interactions common to synovial sarcoma.

28

ABILITY

Ultrastructural findings: The tissue is examined using an ultramicroscope and electron microscope.

Genetic testing: Tissue is tested for a specific chromosome abnormality common to synovial sarcoma.

6. HOW IS SYNOVIAL SARCOMA TREATED? The type of treatment depends on the age of the patient, the location of the tumor, its size, its grade (how abnormal the cancer cells look under a microscope and how likely the tumor will quickly grow and spread), and the extent of the disease. The most common treatment is surgery to remove the entire tumor with negative margins (no cancer cells are found at the edge or border of the tissue removed during surgery). If the first surgery does not obtain negative tissue margins, a second surgery may be needed.

The patient may also receive radiation therapy before or after surgery to control the tumor or decrease the chance of recurrence. The use of intraoperative radiation therapy (radiation aimed directly at the tumor during surgery) and brachytherapy (radioactive material sealed in needles, wires, seeds, or catheters, and placed directly into or near a tumor) are under study.

Patients may also receive chemotherapy alone or in combination with radiation therapy.

7. ARE CLINICAL TRIALS AVAILABLE? Yes. Participation in clinical trials is an important treatment option for many people with synovial sarcoma. Studies are in progress to determine the effectiveness of biological therapies (treatment to stimulate or restore the ability of the immune system to fight cancer), including monoclonal antibodies, and chemotherapy with hyperthermia (kills tumor cells by heating them to several degrees above body temperature).

WHERE CAN PEOPLE GET MORE INFORMATION ABOUT CLINICAL TRIALS? People interested in taking part in a clinical trial should talk with their doctor. Information about clinical trials is available from the NCI’s Cancer Information Service (CIS) via web and in the NCI booklet Taking Part in Clinical Trials: What Cancer Patients Need To Know, which can be found at on the Internet. This booklet describes how research studies are carried out and explains their possible benefits and risks. Further information about clinical trials is available on the NCI’s website. The website offers detailed information about specific ongoing studies by linking to Physician Data Query (PDQ), the NCI’s cancer information database. The CIS also provides information from PDQ. Cancer Information Service: Telephone: 1–800–422–6237 TTY: 1–800–332–8615 www.cancer.gov

8,12,13

7/29/07

1:41 AM

Page 29

recipes provided by The American Institute for Cancer Research

DIETARY CHOICES PLAY AN IMPORTANT ROLE IN REDUCING CANCER RISK GREEK CHICKEN WITH TOMATOES, PEPPERS, OLIVES AND FETA

Remove from heat, transfer to serving dish, and sprinkle with olives and feta cheese.

Lemon, mint and a garnish of crumbled feta cheese bring the flavors of Greece to this easy chicken dish. If fresh Roma tomatoes aren't available, canned tomatoes will provide the same cancer-fighting nutrients and vivid color.

Nutritional Information: Serves 8. Approximate per serving: 210 calories; 9.5 grams of fat

For Greek seasoning salt combine: 2 tsp. garlic salt 2 tsp. lemon pepper 2 tsp. oregano 2 tsp. dried mint

Orzo is a tiny, rice-shaped pasta that works well with the nutty flavor of the brown rice in this recipe. Enjoy a half cup of this flavorful side dish (cooked), and you'll need only two more servings of whole grain foods to meet the America Cancer Society’s healthy eating guidelines.

Ingredients: 4 boneless, skinless chicken breast halves, cut into bitesized pieces 1/4 cup flour 8 tsp. Greek seasoning salt, divided 1 tsp. olive oil 1 large onion, sliced lengthwise 1 green pepper, cored, seeded, and sliced lengthwise into strips 3 Roma tomatoes cut into eighths 3 Tbsp. Kalamata olives, chopped 3 Tbsp. feta cheese, crumbled

Refined grains, such as white rice, lose much of their vitamins, minerals, and all of their fiber in processing.

Dredge chicken in flour mixed with 4 teaspoons of Greek seasoning. Heat oil in a large skillet over medium heat and add chicken, sautéing for 3 to 4 minutes until cooked through. Remove chicken from pan and set aside.

Add onion to skillet and sauté until tender, about 2 minutes. Add bell pepper and cook another 2 minutes.

Return chicken to skillet and cook 1 to 2 minutes, sprinkling with remaining Greek seasoning. Mix in tomatoes.

RICE WITH ORZO AND MINT

Ingredients: 1/2 cup orzo 1 tsp. olive oil 3 cup fat-free chicken broth 1-1/3 cups uncooked brown rice 1/2 tsp. garlic salt 3 Tbsp. fresh mint In a medium saucepan on medium-high heat, brown orzo in olive oil, stirring constantly. Pour in chicken broth and bring to boil.

Add rice and garlic salt and return to boil. Reduce heat and simmer 45 minutes.

Remove from heat and stir in fresh mint.

Nutritional Information: Serves 8. Approximate per serving: 149 calories; 2 grams of fat.

8,12,13

7/29/07

1:42 AM

Page 30

T

he breast-cancer-awareness message wrapped in a pink ribbon and distributed by celebrities and sponsors is now as recognizable as that ubiquitous green-and-beige coffee shop on every corner. Companies from the Hard Rock Cafe to Chevron, and from Estée Lauder to Fuji, give the cotton-candy-colored loop exposure as they cozy up to the mature woman and her disposable income.

This successful corporate marketing campaign seems to have worked on the level it was intended: The proliferation of the “for a cure” message has led to lots of talk about “early detection,” “self-exams” and “mammogrophy”—terms that percolate through women’s consciousness and lead them to be more proactive about their health. But the media blitz hasn’t reached everyone.

That’s why Grace Wright, a North Carolina native, works to ensure the message gets to women who don’t fit as easily into the marketing mold.

After the women become familiar with the clinical names for their body parts, Wright shows them a video of exactly what goes on behind exam-room doors, which reduces the women’s anxiety around visiting a physician.

Working out of the Wake County, North Carolina Office of Disability and Health (NCODH), Wright uses her charm and charisma to empower women with moderateto severe-developmental disabilities who might otherwise be uncomfortable with the idea of self-breast exams at home or mammograms in a doctor’s office.

Wright frequently gives inspiring talks that move people to action. One woman who attended one of her lectures, approached Wright afterwards, explaining that she felt a lump in her breast but was afraid to go in for an exam.

Wright immediately offered to go with her.

Wright is a founder of Women Be Healthy, a program where she teaches this often-overlooked group an eightweek course on making monthly self care routine. The course provides information on what to expect during clinical breast, mammogram and pelvic exams, covers reproductive health as well as active participation in one’s overall wellness.

Women with developmental disabilities may find managing their health care an overwhelming prospect—if they think of it at all. But Wright’s easy-going communication style creates a sense of trust and empowerment, which has led to women in her circle to take a more active role in this critical area of their lives.

“They’ve all been taught to keep their dresses down, but they don’t know how to identify their body parts,” 30

Wright laments. “We were naming the different parts of the pelvic area one day, and we could tell that they didn’t have a clue about what we were talking about!”

ABILITY

Even with her compassion and coaxing, some women are still frightened, Wright finds. “I hear it all the time: ‘I’m afraid it’ll hurt,’ they say. I tell them if they choose to endure those few seconds, it could save their lives.”

“I told her I’d cancel my scheduled appointments. She said, ‘You’d do that?’ So I gave her my card and said to call me.”As promised, Wright accompanied her to the doctor. The lump turned out to be malignant. It was removed, and the woman went through a treatment that possibly saved her life.

Wright possesses a passionate desire to reach out and help those who need her. Her enthusiasm, she believes, “is a calling from God. I enjoy educating people, talking to people… I enjoy sharing and learning new things that I can pass on.”

Wright has served others throughout her career. Her first volunteer experience allowed her to help children with disabilities. In 2003, she also founded, through her church, a food pantry, for which she currently serves as executive director.

Breast Cancer728a.qxd

7/30/07

10:44 PM

Page 31

Working within the African-American community, she founded the volunteer agency, Save Our Sisters of Rex. “I love this group of women, they’re dedicated and committed. We’re about outreach, planning and getting things done.” SOS also educates African-American women on the importance of getting screened for breast cancer. Wright said that the incidences of the disease are much higher within this group, and yet the organization offers free screenings to all. “We go out into the community two times a month with our mobilemammography bus and give a free breast exam to anyone who wants one.”

The seeds of her work with breast-cancer awareness were planted in childhood. “When I grew up in Wake County, North Carolina we lived in what everyone called the home-house.” Since her family had the largest home in the extended family, relatives came there when they were ill. Wright’s mother and grandmother cared for sick family members, and she grew up with a living example of the healing powers of love and compassion.

One day, when Wright’s adult cousin was being cared for at the home-house, the woman’s towel accidentally dropped. Wright remembers that she and the other children broke out in laughter when they discovered something very odd—the woman was missing a breast. Not until she was an adult did Wright realize what her cousin had gone through. She is still haunted by her own careless laughter.

She’s made up for the cruelty of that moment many times over. Recently she received the honor of being named one of 25 dedicated people who received the 2007 Yoplait Champion honor. “I will never forget the award ceremony; it was an evening of elegance,” Wright said. Winning the award came as a surprise.

“The first time they called I was up to my eyes in Toys for Tots at my church so I deleted the message after listening for a few seconds to a lady with a really highpitched voice.” At work the next day she got a call forwarded to her desk. “At this point I was starting to get irritated that the same lady was calling back; I thought it was a sales call. She was so nice and excited, and she said she needed information. Finally I realized that I had won this honor,” Wright said.

Yoplait gives a $1,000 donation to the charity of the honoree’s choice. Wright directed the contribution to The Merry Way, a faith-based organization in her Wake County community, which provides community outreach services such as food, gas, transportation and other necessities to folks in need.

Wright doesn’t give herself a gold star for her work in service of the pink ribbon. “Just hearing a survivor story is reward enough.” Giving to others is not only the right thing to do, it brings her happiness and fulfillment.

“I love it,” she says.

Top down: Yoplait awards; Grace Wright flanked by supporters; Save Our Sisters of Rex mobile-mammography bus; and Elaine Lustig awardee along with Grace

ABILITY 31

8,12,13

7/29/07

1:45 AM

Page 32

N

ational Breast Cancer Awareness Month (NBCAM), characterized by a pink ribbon and a race, blows in with fanfare each October. Unseasonably packaged in an abundance of shades, the PR pink-out arrives as effortlessly as autumn. It may be hard to overlook the hoopla, but, in case you missed it, the core message is about the importance of early detection, with a special emphasis on regular mammography exams.

National Mammography Day is on the third Friday in October and was first proclaimed by President Clinton in 1993. On this day, women are encouraged to make mammography appointments and some medical facilities offer free or reduced-cost screenings.

exclusive management of it for years. Currently, AstraZeneca HealthCare Foundation along with numerous other organizations, medical associations and agencies sponsor NBCAM

While AstraZeneca enjoys its association with the popular pink ribbon campaign, the company has been criticized for not mentioning in any of its NBCAM literature how reduced exposure to environmental carcinogens can help in cancer prevention. Also, AstraZeneca produces tamoxifen, a leading breast cancer treatment drug.

It is known that tamoxifen causes uterine cancer, liver cancer and gastrointestinal cancer, and that after just two to three years of use, tamoxifen will increase the incidence of uterine cancer by two to three times. The Beast cancer statistics are alarming. According to biggest shock is the fact that tamoxifen will increase the Komen for the Cure, breast cancer affects one in eight risk of breast cancer. The journal Sciwomen. About 178,500 new ence published a study from Duke cases of invasive breast cancer According to Komen for University Medical Center in 1999 are expected to be found in showing that after two to five years, women this year, and about the Cure, breast cancer tamoxifen actually initiated the 40,000 women will die. Men affects one in eight growth of breast cancer. have a lower chance of getting women. About 178,500 breast cancer, but it is estimated Recently, another pharmaceutical that 450 men will die of breast new cases of invasive link to breast cancer was discovcancer this year as well. Black breast cancer are expected ered. A 2003 study in the New women have a higher breast to be found in women this England Journal of Medicine cancer rate than any other ethshows breast cancer rates decreased year, and about 40,000 nic or racial population. Breast substantially with almost a 10 percancer is the most common women will die. cent drop. The commonly held cancer in black women and it’s attributing factor is a drop in hortheir second leading cause of mone replacement therapy (HRT). Breast cancer rates death, exceeded only by lung cancer. Another group at fell in direct correlation with women canceling their higher risk is Jewish women of Ashkenazi descent. The HRT prescriptions following a 2002 study that linked two most significant risk factors are being female and hormone replacement with heart disease. According to getting older. Women over 50 bear the majority of the National Institutes of Health (NIH), the two most breast cancer occurrences and deaths. commonly prescribed forms of HRT in the United States, Premarin and Prempro, had their steepest Featured prominently during NBCAM, Komen for the declines starting in 2002-2003 — from 61 million preCure is noted for pioneering race-for-a-cure fundraising scriptions written in 2001 to 21 million in 2004. Turns with its first race in 1983. It was founded by Nancy out, the estrogen in HRT actually grows Brinker, the sister of Susan G. Komen who died of certain types of cancer. breast cancer at the age of 36 and requested that her sister do everything possible to bring an end to the disease.

Donald Berry, chairman of the department of biostatisHer sister kept her promise by establishing the Susan G. tics at the University of Texas M.D. Anderson Cancer Komen Breast Cancer Foundation, now one Center in Houston said, “From 1975 to 2000, breast of the most prominent and influential grass-roots breast cancer incidence increased rather dramatically. While cancer organizations. part of that increase was clearly due to the introduction of screening mammography, once you take out that But, NBCAM has a corporate, cure-centered beginning. effect, there is still a rather astounding increase of Pharmaceutical giant AstraZeneca established the 30 percent.” monthly October event in 1985 and maintained

“

“

32

ABILITY

8,12,13

7/29/07

1:46 AM

Page 33

“While there have been a number of theories put forward to explain the increase, it now looks like some of that increase is due to the use of HRT,” Berry said. “When women stopped using HRT, it looked kind of like a market correction and the numbers went back down.”

Komen for the Cure recently branched out from the corporate-led, cure-centered and breast screening-based methods to breast cancer eradication by funding a study on environmental factors. Teaming up with the Silent Spring Institute, Komen for the Cure published Environmental Factors in Breast Cancer, the most comprehensive review to date of scientific research on environmental factors that may increase breast cancer risk (now available to all online). Factors included in the study for cancer risk were body size, physical activity, environmental pollutants, and diet.

The study unearthed 216 chemicals that cause breast cancer in animals. Out of those, 73 have been present in consumer products or as contaminants in food and 35 are air pollutants. Maybe you don’t want your clothes quite so white, because Amsonic acid, a fluorescent whitening agent used in laundry detergents, has been shown to cause mammary tumors in female rats, for example. Or, what about your tap water? MX, formed during the disinfection of drinking water, a by-product of chlorinating agents, has been shown to increase malignant mammary gland tumors in animal studies.

Twenty-nine of the 216 chemicals found are produced in the United States in large amounts, often exceeding 1 million pounds per year––probably one reason why the Silent Spring Institute says that living in developed nations increases breast cancer risk. And according to Devra Lee Davis, director of the Center for Environmental Oncology at the University of Pittsburgh Cancer Institute, “One in ten women who develop breast cancer do so because they inherited a defective gene from their parents. That means that 9 out of 10 women who get the disease were born with healthy genes. And yet something happened to those genes in the course of a lifetime to give them breast cancer.”

Davis, author of, The Secret History of the War on Cancer, also points out that every chemical that we know for sure causes cancer in humans also has been shown to cause cancer in animals. She points out that we don’t know if the opposite is true, but she believes it is. That’s why this recent study is so significant for her.

Learning that one’s environment causes cancer may make the problem seem overwhelming. Julia G. Brody, PhD, executive director of the Silent Spring Institute calls this discovery an opportunity.

“While it is disturbing to learn that there are so many chemicals that may be linked to breast cancer,” she say, “there is also a great opportunity to save thousands of lives by identifying those links, limiting exposure and finding safer alternatives. It is critical that we integrate this information into policies that govern chemical exposures.”

If NBCAM and its power-of-pink message gets behind eradicating environmental carcinogens, who knows what sort of progress can be made? Just imagine a future of low breast cancer rates or even ending the disease altogether as Susan G. Komen requested––anything is possible.

by Lisa Wells www.sciencereview.silentspring.org/index.cfm www.environmentaloncology.org/ec.htm ABILITY 33

Ty730c.qxd

34

7/31/07

ABILITY

3:32 PM

Page 34

Ty730a.qxd

7/30/07

9:53 PM

Page 35

, dition E e m r: Ho s can keove ucks folk p to a hit a M tarb me e lea treme ’s Ex ly as the Sy made th esign Ho e C B A t onl t onc quick st of (Art D as ho nearly as esigner no ADHD dition tha nnington n o s he d ding a con h sea y, Pe called is fift d is expan t corner. T boutique isorder— am. Toda r a line of h o t e in e nex le dre d an esign vity D es ov s bran oing ow g nnington’ joint on th wn L.A. d Hyperacti impossib e; presid aspirin an him h n m / Ty Pe new java ened his o n-Deficit em like a ars his na r both an ght up wit nswer a o e o a e f p i u s t b o a o p t n u ay at h a ,c ten ly so throw he recent ink to At e leads tod agazine th pokesper et Cooper ng enoug s o , show ), with a w sful life h e-décor m rves as a -chief, Ch y sit still l ow. r e s n l i s s o m e n c c o r e n o th h d ,h ve ito De the suc ? rterly ars, and e r. Our ed gton coul e road for e a d u dition a q E e n m a e r e i h t s S u n t m nn on ac she for I : Ho publi fashions ion manuf action. Pe get back , and eover e k a m o t i e e t t a M h hom D medic eak in t reparing that t the reme r ces a company u know, h Ext a t i p ADH a brief b he was p S w this s g , yo lved ted ding durin uestions a t invo n Tra tings with ke A Wish ess. I wan e o g s u a q d yo mee e Ma few l, I w e illn ow di . Wel g creative ething lik some hug H e : e r s e let’s som ling avin Coop wow, to start h ted to do o are batt Chet , h O h n ton: I wa ornia ds w n n i n g t t o C a l i f w i t h m e . ses for ki e P y u u T ent o show reeho w a s s d t o d o a ee-story t e r w a n t e build th b y ma

N

ABILITY 35

Ty730c.qxd

7/31/07

3:16 PM

Page 36

During season 3 of Extreme Makeover: Home Edition, Ty creates a mural for two of six adopted kids in Colorado Springs, CO

to make a wish of theirs come true. So we got to playing around with different ideas. They came up with building a house in seven days with six or seven designers, and then chaos ensued. But that’s what’s great about the show: It kind of creates itself. While the original show they’d planned was more about the chaos of building a house, it evolved into what it is now, which is the type of show where everybody gets involved. It really is phenomenal. It’s the greatest job I think I’ll ever have.

Cooper: They came to you because of your background?

Pennington: Right. On Trading Spaces I was a carpenter-designer, and I remember them asking me the question, “What do you think about building a house in seven days? Do you think we can do it?” And I said, “No, absolutely not, but that would be a great television show.” So Extreme Makeover: Home Edition evolved 36

ABILITY

along the way. A lot more goes into it than I think a lot of people realize, and because we have such a short-production timeline, it’s incredible that we can pull off what we do. But you really have to have a plan of attack before you get started, because you can’t change your mind once the ball starts rolling.

Cooper: Are you involved in selecting the family?

Pennington: No, no, I wish I was. We have a group of people who do that. They’re fantastic. You have to do so many background checks to make sure their story is true, that the house is really theirs, you know… Our crew goes through like 4,000 tapes a week, and the team is just outstanding. They find great families; that’s the story. That’s our show. So finding families is the toughest job. They have to not only be great people, but they also have to have a great story. I think they also have to have really given back to so many people. And most of the ones that we choose really aren’t even asking,

Ty730c.qxd

7/31/07

3:12 PM

Page 37

they’ve been nominated by someone else. That’s the key. I’m real passionate about family.

Cooper: Saying “no” to so many people...

Pennington: Yeah, that’s the worst part, but who knows, we might be able to go back and help some of those people we had to say “no” to earlier. What’s really cool is, some of the families we’ve helped have come out and helped us with other families. They really want to give back what’s been given to them. There’s definitely a pay-it-forward kind of vibe on our show.

Cooper: What season is this for the show?

Pennington: We just started season five.

Cooper: Are you still using the bullhorn?

Pennington: (laughs) No, we sent it on vacation for a while with a family, and it’s doing great. It sends back postcards, it’s met some other bullhorns and they’re having meetings, they’re yelling at each other. It’s great. It’s having a great time on its own. It’ll come back eventually, but right now it’s on vacation.

Cooper: (laughs) Tell me about your home-fashion line at Sears?

Pennington: I designed bedding, plates, glassware. It’s something I’m really passionate about as well. That’s one thing I guess that people might not know about me. Design is in my blood. So to be able to have a chance to do it for Sears, and to get it out to people who can actually afford it is awesome. So it’s cool, man. I’m the guy who makes the final decisions on everything for my line. Many months ahead of time I have to give the okay so it can be ready to manufacture. It’s definitely more than just putting my name on something. I’m kind of a control freak, but it’s awesome, man, it’s really, really cool. It’s great to see the finished thing out there and see people enjoying it. But I’ll be honest with you, it takes a lot of research. I design a lot of the product on my computer in between doing the show, so I definitely have a lot going on. The coolest thing about my job is the creative process.

Cooper: You went to school for design?

Pennington: Oh, yeah, those are the only schools I’ve ever gone to. I think I went to the first one when I was 10 years old, and after I graduated high school, I went to the Art Institute of Atlanta. Then I worked in a design studio, and won some awards. I took a break after that, and just traveled a while. But I always went back to working with my hands, whether it be building and designing furniture, or designing logos for corporate identities. I’ve been playing around with graphics my entire life, as well as fine art. So to use my creativity to not only make something unique and different, but also to design a line of home fashions, it really is a dream come true. But it’s kind of weird, because it’s always the path I’ve wanted to be on. I just didn’t know I would take so many different back roads to get here. It’s awesome that I actually ended up where I wanted to be.

Cooper: Are you using Photoshop, Illustrator, CAD? Pennington: I’m pretty fluent with Photoshop. But every year they do an upgrade, so the tools become slightly different, which is good, it’s just that I have to keep upgrading myself. I’m still working on CAD and all those other tools. I have a shop where I design furniture and stuff. For

Ty730a.qxd

7/30/07

10:13 PM

Page 38

yeah, I think we all dig a little bit of that. Everyone likes a clean, open, Zen-like space. I’m definitely down with the Japanese and Scandinavians’ simplicity of design.

But do I have a lot of mirrors that reflect the image of water in my house? No, not really. But I definitely like the sound of water in the backyard. I do find a way to bring in the elements.

Cooper: Was it tough going to school and having ADHD? Pennington: Oh, God, growing up with ADHD! Well, to be honest with you, that was difficult. First of all, what a lot of people probably misunderstand is, there’s ADD and then there’s ADHD. [For more on ADHD, see page 43] And the “H” stands for “hyperactivity.”

And if you are a child with an enormous amount of hyperactivity, school itself, along with the learning process, goes right out the window. I mean, I was so out of control that I spent most of the time in the hallway or in detention. What was really interesting was that my mom was actually studying to be a child psychologist at the time, and went to my elementary school to test the worst kid they had. She was pretty shocked when the principal and the administration sent me up there. She was like, “Oh, my God!” and I was like, “Hey, what’s up?” Then she observed me in class and within 30 minutes, I was wearing my desk. I swung to the blinds, I climbed out the windows, I ran around naked, I slapped Johnny in the back of the head. So I was what you call “a classic distraction.”

Design is in the details— Ty sketches a floorplan for the show

some of the programs, I’ve got a guy I work with. He’s actually a buddy from high school. So I’m really trying to understand CAD. I just don’t have a lot of time in the day to devote to it. Still, we come up with some really cool, unique stuff.

Cooper: Do you ever incorporate feng shui?

Pennington: Either you understand feng shui or you don’t. I don’t. But you can walk into a room and know if it doesn’t flow because the back of the couch hits you in the knees. That room definitely doesn’t have feng shui. But whether or not my bed is facing north or south… I just use the principal in the sense that I try to achieve harmony in the room, but I’m not the type of guy who will come in your house and say, “My God, you need some feng shui up in here.”

I think everybody has a certain amount of feng shui that they can understand. That kind of thing doesn’t have to be forced on anyone. But I can walk into any home and tell whether its elements are working in harmony. Usually it’s a matter of clearing out a bunch of clutter. But 38

ABILITY

With ADHD, one of the things is, you can read a whole chapter in a book and not remember one word.

The second one is, you are so distractable that you just cause chaos in the classroom. So not only was I the class clown, but I never really had a chance to learn much because it just didn’t sink in, mainly because I was being disciplined the whole time. So I tried all kinds of different things like antihistamines, which they put me on to make me drowsy. But I wasn’t really diagnosed with ADHD until I was starting college. So it’s amazing that I actually graduated high school with a decent grade-point average. The grades would be As one year, when I’d start a new school, then Ds the next year once people got to know me. That’s how you can tell if someone’s really got it, check their grades and their conduct. So yeah, school was probably one of the most difficult things.

ADHD hurts your confidence. You feel like you really can’t succeed because you don’t make good grades, you’re always out in the hallway so you don’t really fit in as a member of the class. That really kind of affects you later in life, especially when you’re trying to get a job and your confidence level is low, and your parents are afraid for you to mow the grass because they’re afraid you’ll chop your toes off. Chances are you will chop your toes off... So for me, it wasn’t until I really left home and kind of went out on my own that I started

Ty730a.qxd

7/30/07

10:00 PM

Page 39

to grow in confidence, because people were so used to me as a child with ADHD that they couldn’t really see me as an adult. So that was difficult.

But once I was diagnosed and got on prescribed meds, I could work during the day and go to school at night, and really focus my life. That’s when people sought me out to come work with them. I went on to win awards in design. I realized, I have a talent. So yeah, it was night and day. It definitely changed my life.

Cooper: How did you find the help you needed?

Pennington: Luckily since my mom was a child psychologist, and I was actually going to college at the time and taking an art class, she noticed that I was doing some pretty disturbing art, and she was like, “What the hell is this?” And so she kind of had me checked out by a psychiatrist. She’d always suspected I had some problems, because she’d studied psychology most of her life.

But once I sat down with this one doctor, who was quite brilliant, within three seconds of looking at my grade transcripts and talking to me he said, “This looks like classic ADHD.” So I’ll be honest with you, I don’t think anyone is excited to hear that they have a learning disability and that they have to go on medication. I certainly wasn’t excited to hear that. But I thought I’d give it a try. This guy seemed like he really knew what he was talking about.

He traced the condition all the way back to primal man, where there was the farmer and the hunter. The farmer would tend to the fields all the time, so that his crops came in on a regular basis, while the hunter only left the cave once he was out of food. Then he went out, got a whole bunch and dragged it back. So in a way I could kind of identify with that scattered, ‘hunter’ personality that doesn’t plan things out, but focuses on priorities, what needs to be done now, and say to myself, “okay, that’s where it comes from.”

Once I tried out different meds that he prescribed and then went back for the follow-up, there was a huge change in my behavior, which was phenomenal. I’d never even heard of ADHD. I knew that I had problems.

My brother was pretty aware I had problems, because I was always in the hallway. So to see such a change in my grades and in my class participation, not to mention the fact that I could actually communicate with other people, go on a date and not mumble the entire time…

I think a lot of people don’t understand how much of an impact this condition has on a person, and what a struggle it can be in your life, not just in your grades and your job, but with your relationships. Especially when you’re a teen, people are trying to understand what’s going on with you and you just don’t have a good way to really communicate it. That’s probably why our jails are so full right now, because nobody gets treated.

That’s why I joined up with the ADHD team and spread

Ty730b.qxd

7/31/07

11:10 AM

Page 40

Pennington: (laughs) True. I have a lot going on, but it’s fun. I have to admit, though, that anyone who’s ever lived with ADHD can understand the concept of thriving in chaos, because most of one’s life is like that. I think a lot of people fear that once they get medicated for ADHD, they’ll change as a person, but I haven’t really changed. It’s just that now you can rely on me to be on time and get the job done when I say it’s going to get done. Because that’s the thing: You can actually finally finish the things that you start.

That’s probably the biggest difference in whether you’re treated for ADHD: People can trust you, and that’s huge.

Cooper: Do you like being on the fast track?

Pennington: That can be a big problem with people who have ADHD: being on the fast track. The three characteristics are distractibility, impulsivity and hyperactivity. Being impulsive means you do things without thinking a lot, so especially kids in their teens can descend into serious, life-changing problems that way. When I was impulsive I used to jump off houses playing “Army.” Who knows what’s going to happen when you take risks like that?

But I was like, ‘Let’s just see.’ A lot of people don’t realize how big of a problem it is. It’s not just something you grow out of because you reach adulthood.

Through Access Surf, Ty hosted a day at the beach for people who rarely get to enjoy one

the news, because I think there are a lot of kids out there who are ashamed that they might have it. I think I’m a really good example of someone who had it really, really badly—and still does—but has been able to not only build houses in seven days, but communicate with builders, use hand tools and at the same time film a television show and design a line for Sears. It’s amazing that I can juggle that much and keep it all on track. So yeah, I think I’m a pretty good spokesman for how to make it all work. You can be successful if you get to know yourself and realize that there are things you must to do if you want to manage ADHD. Cooper: And you also find the time to do an interview with ABILITY Magazine while you’re on the run.

40

ABILITY

Cooper: What meds are you using right now?

Pennington: I’m actually on Adderall, but I’m starting to try out a new product called Vyvanse, which is FDAapproved. It’s a cool product that really keeps me focused all throughout the day and into the night.

That’s important because that’s the time when kids are doing homework and hanging out with the family. So that’s great. It’s made so it’s less likely that people will abuse it.

Cooper: Have you ever heard of the ABILITY House program?

Pennington: The ABILITY House? I’m not sure.

Cooper: Do you remember an award given to Extreme Makeover from the Media Access Office, which is sponsored by California’s Employment

Ty730b.qxd

7/31/07

11:11 AM

Page 41

Development Department? After the ceremony I met Denise and Charisse from your show.

Pennington: Oh, sure.

Cooper: We talked in length about a possible partnership between our program and yours. It’s funny, because you mentioned building a house in seven days. What we’ve done is partnered with Habitat for Humanity, I’m sure you know their history. I actually created the partnership with Millard Fuller, who started Habitat. We did our first ABILITY House in Birmingham, AL for a Vietnam vet who uses a wheelchair. We outreach to volunteers who have disabilities. Our first house was built in 1999. We got 250 volunteers with disabilities and did a blitz, seven-day build, for this house.

We had every type of disability you could think of, from learning and developmental disabilities, to people using chairs and prosthetics, to those who were blind or deaf. It was a great success and we now build homes across the country like that. I just want to share that with you to keep in the back of your mind, that there’s something still…

Pennington: …something we could still do in the future. There’s so much coordinating going on to do what we do. I can imagine that doing it the way you guys do it is truly awesome, man! I’ll ask more about that. That’s cool.

Cooper: What are some things that you would like people to know about that you’re doing that doesn’t get on the media’s radar?

Pennington: There’s always so much going on, man. I’m not sure if people are aware of the fact that I’m involved in a school in New York’s Harlem community, where we’re redoing a playground, which is kind of cool. There are so many kids who have learning disabilities and other issues that they have to live with, like not having some things that other kids have, including moments to just play. And I think that’s so important growing up, just those times where all you do is laugh, because once you get older, there are not as many moments. I think childhood is an awesome time. The pressures of being an adult aren’t there yet. So whenever I get a chance to work with kids, I do that. They just inspire everyone.

The sound of their laughter goes such a long way.

I’m a firm believer in education, and the more programs you have that allow people to express themselves and have fun, the more they learn. I was definitely a kid who realized that if you threw in a creative project at the same time that you taught me history, I was going to soak in two to three times as much knowledge. So being involved with kids’ playgrounds is something I’m definitely into. The project we’re doing in New York is going to be awesome. I can’t wait till we start. But I think there are lots of things going on with me that people don’t know. I just got back from Hawaii, where I teamed up with some guys to do a project to help people with disabilities who can’t even go to the beach, because wheelchairs don’t roll on the sand.

A friend of the family has a boy with muscular dystrophy, so he really can’t use his legs. So I teamed up with a program called Access Surf.

These guys started a program to get people with disabilities back in the water. So I went out and helped people with all kinds of different conditions, whether it was Down syndrome, whether they were in a wheelchair or had artificial limbs. We got them in the water, got them on a surfboard or in a kayak, and they got to spend time in the ocean. Seeing their reaction was unbelievable, man, it was fantastic.

Ty730a.qxd

7/30/07

10:02 PM

Page 42

I spent a moment with a kid named Casey who couldn’t use his legs, but loved being in the water. I got him in the water on the end of my surfboard. We paddled out and caught a wave together, and just hearing him scream at the top of his lungs was awesome. It really shined light on people with disabilities, and others in the fact that many don’t have the same access that others of us do. (I unrolled this plastic that allowed wheelchairs to go right down to the water, where we put them in and shared that moment.) A lot of volunteers came out, a lot of surfers. It was so cool to see dads and moms sharing that time with their kids who have disabilities. It was just fantastic.

Cooper: That sounded like a great holiday, by the way, a vacation that you could combine with helping others.

I really do get inspired. My girlfriend could barely keep from crying the whole day because she was so moved by the smiles on people’s faces. So that’s one of the things I did while I was on vacation. My schedule keeps me so damn busy, I don’t do as much as I would like.

I think we all get inspired by people, and there are so many people who have been on the show that inspire me. That’s what life should be, inspiring. It’s the everyday people that have gone through more than you or I have, those are the true heroes. And I think that’s what’s great about our show, that we shine light on them.

Cooper: Yes.

Ty and his partner of 11 years, Drea

42

ABILITY

Pennington: It was. There are not many times you get to do that.

Cooper: If you ever want to do anything with surfing along those same lines, there’s a California-based foundation called Life Rolls On. They have a program called They Will Surf Again for people with disabilities.

Pennington: Is Life Rolls On that project Jesse Billauer is doing?

Pennington: Yeah, I know Jesse, he’s a great guy. He was on our show. He’s a pretty cool cat. I had actually met him before at a talk show.

Cooper: I need to watch more TV. www.abc.go.com/primetime/xtremehome www.accessurfhawaii.org www.liferollson.org

Ty730a.qxd

7/30/07

10:02 PM

Page 43

Fact Sheet on ADHD Attention-Deficit / Hyperactivity Disorder What is attention-deficit/hyperactivity disorder?

Attention-deficit/hyperactivity disorder (ADHD) is an illness characterized by inattention, hyperactivity and impulsivity. The most commonly diagnosed behavior disorder in young persons, ADHD affects an estimated three percent to five percent of school-age children. Although ADHD is usually diagnosed in childhood, it is not a disorder limited to children, and often persists into adolescence and adulthood. Frequently it is not diagnosed until later years.

What are the symptoms of ADHD? There are actually three different types of ADHD, each with different symptoms: predominantly inattentive, predominantly hyperactive/impulsive and a combination.

Those with the predominantly inattentive type often: • fail to pay close attention to details or make careless mistakes in schoolwork, work or other activities • have difficulty sustaining attention to tasks or leisure activities • do not seem to listen when spoken to directly • do not follow through on instructions and fail to finish schoolwork, chores or duties in the workplace • have difficulty organizing tasks and activities • avoid, dislike or are reluctant to engage in tasks that require sustained mental effort • lose things necessary for tasks or activities • are easily distracted by extraneous stimuli • are forgetful in daily activities Those with the predominantly hyperactive/impulsive type often: • fidget with their hands or feet or squirm in their seat • leave their seat in situations in which remaining seated is expected • move excessively or feel restless during situations in which such behavior is inappropriate • have difficulty engaging in leisure activities quietly • are "on the go" or act as if "driven by a motor" • talk excessively • blurt out answers before questions have been completed • have difficulty awaiting their turn • interrupt or intrude on others Those with the combined type, the most common type of ADHD, have a combination of the inattentive and hyperactive/impulsive symptoms.

What is needed to make a diagnosis of ADHD? A diagnosis of ADHD is made when an individual displays at least six symptoms from either of the above lists, with some symptoms having started before age seven. Clear impairment in at least two settings, such as home and school or work, must also exist. Additionally, there must be clear evidence of clinically significant impairment in social, academic or occupational functioning.

What is ADD? Is it different than ADHD? This is a question that has become increasingly difficult to answer simply. ADHD, or attention-deficit/hyperactivity disorder, is the only clinically diagnosed term for disorders characterized by inattention, hyperactivity and impulsivity used in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition, the diagnostic "bible" of psychiatry. However (and this is where things get tricky), ADD, or attention-deficit disorder, is a term that has become increasingly popular among laypersons, the media, and even some professionals. Some use the term ADD as an umbrella term after all, ADHD is an attention-deficit disorder.

Others use the term ADD to refer to the predominantly inattentive type of ADHD, since that type does not feature hyperactive symptoms. Lastly, some simply use the terms ADD and ADHD interchangeably. The bottom line is that when people speak of ADD or ADHD, they generally mean the same thing.

However, only ADHD is the "official" term.

How can ADHD be treated?

The most proven treatments are medication and behavioral therapy. Medication stimulants are the most widely used drugs for treating attention-deficit/hyperactivity disorder. The four most commonly used stimulants are methylphenidate (Ritalin), dextroamphetamine (Dexedrine, Desoxyn), amphetamine and dextroamphetamine (Adderall), and pemoline (Cylert). These drugs increase activity in parts of the brain that are underactive in those with ADHD, improving attention and reducing impulsiveness, hyperactivity and/or aggressive behavior. Antidepressants, major tranquilizers and the antihypertensive clonidine (Catapres) have also proven helpful in some cases.

Most recently, the FDA has approved a non-stimulant medication, Atomoxetine (Straterra), a selective norepinephrine reuptake inhibitor for the treatment of ADHD. Every person reacts to treatment differently, so it is important to work closely and communicate openly with your physician.

Some common side effects of stimulant medications include weight loss, decreased appetite, trouble sleeping and, in children, a temporary slowness in growth; however, these reactions can often be controlled by dosage adjustments. Medication has proven effective in the short-term treatment of more than 76 percent of individuals with ADHD. Behavioral Therapy Treatment strategies such as rewarding positive behavior changes and communicating clear expectations of those with ADHD have also proven effective. Additionally, it is extremely important for family members and teachers or employers to remain patient and understanding. Children with ADHD can additionally benefit from caregivers paying close attention to their progress, adapting classroom environments to accommodate their needs and using positive reinforcers. Where appropriate, parents should work with the school district to plan an individualized education program (IEP). www.nami.org www.namiindiana.org

ABILITY 43

Basinet730b

7/30/07

11:42 PM

a voice to be heard

44

ABILITY

Page 44

Basinet730b

7/30/07

11:42 PM

Page 45

A

s a child, Cynthia Basinet found that her thoughts were often scattered. As she grew older, she learned to focus and go deeper within. From that still place inside, she began to seek her own counsel and listen to her own voice. What she didn’t realize back then was that she was managing her ADHD.

Basinet: I know that they were able to get the money that they needed from MINURSO—the UN mission to Western Sahara. It raised awareness in the States and now worldwide. For instance, they’re living on 500 calories or something like that a day, and four or five staples of food.

Cooper: What’s happening there now?

These days, the former international model uses that voice in myriad ways. By speaking softly, she brings comfort to refugees of war and famine. For those who can’t speak for themselves, she amps up the volume as a passionate advocate. And on stage, with the lights down low, she’s a sultry crooner of swinging jazz standards.

Basinet: Well, they’ve suffered tremendous rains and now floods, so they’re in need of blankets and basic shelter. They’re in a worse state than they were five years ago when I went to see them. They’re destitute.

Cooper: Who’s leading the charge on that right now?

Chet Cooper: I heard you went to a different kind of camp recently.

Cynthia Basinet: (laughs) That’s true. I visited Africa through a division of the United Nations and the United States Western Sahara Foundation. They sent me as a part of a delegation to refugee camps for several days at a time to help raise awareness of the conditions there.

We often visited two or three camps at a time because the people were often separated so that if a disease broke out, it wouldn’t annihilate them.

Basinet: Well, James Baker, the United Nations Secretary General’s personal envoy to Western Sahara, has always been a supporter from the beginning, since 1991, I guess, probably way before that. But he recently resigned. There’s a bipartisan organization that this group falls under, and it has a lot of different people on the masthead: Ambassador Coors, Donald Rumsfeld…

But their program has been upstaged by Iraq and North Korea, and the issues there of late.

Cooper: North Korea?

Cooper: What happened during your visit?

Basinet: We sat with the UN leaders as the children put on something of a concert. We traveled with a staffer from Senator Kennedy’s office. Their organization is called Teach the Children.

Cooper: So what did you teach them?

Basinet: (smiles) It wasn’t just one thing. We were there trying to address all kinds of needs. Teach the Children was there to distribute shoeboxes that had been made by a Christian organization in, I think, South Carolina, and each member of the church filled a shoebox. Not just one church, I think it was several. And they waited for the trailer to pass through customs, because you kind of have to pay a little extra money to get your merchandise. But on the way in, the truck broke down. So we were all waiting for it to be fixed, so we could take the boxes to the children. Someone from Kennedy’s staff was there to observe and file a report, because the senator was the most supportive of the refugees’ situation at that time.

Basinet: I can’t say too much without getting deeply into the way they’re working politically, but I think the key is getting to the people and exposing what they are living through. The organization was the one that smuggled out the tape back in 2005 that was shown on NBC, and it was the first time we saw what the living conditions were in North Korea. They deal with emerging nations and nations in conflict, hot buttons, before America goes in. They try to support the underdogs that are trying to stand up against what’s going on that are on the side of America or the Western world.

They support smaller entities that are trying to walk a democratic path.

Cooper: That’s interesting, because when I think of refugee camps, I think purely of human rights issues, basic shelter, food and health facilities.

Basinet: Right. But a lot of reasons why they need those things is political. So they’re all organizations in at once trying to mediate their needs and their applicability to the world now.

Cooper: So there was a concert?

Cooper: You were nominated for a Nobel Peace Prize?

Basinet: Well, they put on concerts quite a bit to keep morale up. And they play the music over the loud speakers at night when the people go to bed to lull them to sleep, like a lullaby.

Basinet: (laughs) Yes. That was to celebrate the 100th anniversary of the first woman winning the Nobel Peace Prize and to highlight the fact that despite thousands and thousands of women around the world working towards peace with individual peace projects, only 21, I think, have won in the last 100 years. So a woman, whom I believe is in the Swiss Parliament, put forth an idea to

Cooper: Do you know of any benefits that have come from that trip?

ABILITY 45

Basinet730b

7/30/07

11:43 PM

Page 46

nominate 1,000 women around the world based on the population from each country to represent other women that are working towards peace.

Cooper: What was your part in that nomination?

Cooper: So recording music came fairly late in your career.

Basinet: Well, they were trying to include different members of society other than just human rights and nonprofit organizations. They also wanted to include people in the arts, such as a recording artist, and they looked at the project in terms of microeconomics—how people in conflict, with limited income, can still find ways to have their own start-up companies through the power of the internet. I’m a huge proponent of the internet, and the idea of building your own allies and not having to wait for a government organization to step forth to help you.

Basinet: Yeah, but when I grew up, they used to tell you, “Come back when you’re older,” because it was jazz. My voice definitely has a jazzy feel.

Cooper: Are there companies in that area that bring internet access to the camps?

Basinet: It kind of comes with having a child and meeting with his teachers all the time and trying to solve problems for him. I started to look at myself and how I processed information. I also have an older brother who is mentally challenged. That obviously made me more sensitive towards people who don’t have a voice, and I think it also helped me tune in more to others because I had to listen unconditionally. I became a kind of bridge.

Basinet: No, not at all.

Cooper: Have you talked with any companies about that?

Basinet: What I tried to get, immediately after coming back from the camps, was extreme sportswear sunglasses, because they have such a high rate of cancer in the eyes from the silica, the sand. One pair of sunglasses could be shared amongst 50 different people, and at least it would allow them the ability to live. We think about global warming in America, but you can’t imagine how much it is affecting people living in camps without shelter. The winds are stronger, the sun is stronger, the heat is stronger, the rains are stronger. So it was so frustrating just trying to get that, and I don’t have any accessibility to Silicon Valley or any way of getting computers. All I could do was to impress upon the head of the hospital and the head of the school to use their resources to help the people in the camps.

Cooper: How did you get started in modeling and end up singing?

Basinet: Usually for special charity events that raise awareness or money.

Cooper: Tell me a little bit about your awareness in the area of learning disabilities.

Cooper: When did you realize there was a difference between your brother and other kids?

Basinet: Somebody in the neighborhood pointed it out maybe when I was around six.

Cooper: How did it affected your brother?

Basinet: Negatively.

Cooper: How did it affect you?

Basinet: Any time you have a high-needs family member, the whole world centers around him. So that’s the only thing you know from the getgo, that all your thoughts and care are for this person.

Basinet: I imagine it does in many families.

Cooper: What does your brother do today?

Basinet: He was working at Home Depot, stocking. One thing a lot of these large companies do really wonderfully Cynthia and son

ABILITY

Cooper: And these days do you travel around performing?

Cooper: Does that cause problems among the siblings?

Basinet: I started as a house model for I Magnan and then Bob Mackie “discovered” me and put me in his show. After that, a modeling agency in San Francisco picked me up.

Then I moved to Paris and modeled for five years in Europe. When I came back here, I started making commercials, music 46

videos and movies. Then I had a voice coach and in ‘97 I started recording music.

Basinet730b

7/30/07

11:43 PM

Page 47

The ABILITY House program, working with Habitat for Humanity, ABILITY Awareness and ABILITY Magazine, outreaches to volunteers with disabilities to help build accessible homes for low income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries, please contact us for more information. info@abilityawareness.org www.abilityawareness.org is take in people who are mentally challenged, and put them into the workforce.

always think, “I don’t know, for me it’s been really hard.” And if I’m saying that, can you imagine what a woman in Sudan or the Philippines is saying?

Cooper: What about your experience with ADHD? Cooper: How did you fare in school?

Basinet: I paid attention to how my mind worked, and I realized that I was giving my son a lot of different things to do at once, instead of expecting him to complete one task. So I had to start to quiet my own mind.

And then, when I stilled my mind more, then the spiritual aspects of my life came forward. That’s when I started understanding more about how Ritalin played into my emotional development.

Cooper: What was your experience taking medication as a child.

Basinet: At every age a child develops certain things. At the age of eight he or she learns to play with others. At the age of 10 he or she learns how to do this skill or that one. And as that child is developing, who’s to say how much medication is appropriate to give to him or her?

How does it affect the way that child learns a task or skill? I think the meds I took made me more isolated. I was very much in my own head.

Basinet: Very well. I probably wouldn’t be a good musician if I hadn’t had the meds, however, because they gave me the ability to focus and go deeper into my music.

Cooper: It’s always one of those ‘what if?’ situations.

Basinet: You give up one thing in exchange for another. There will always be something that you have to work around, so you try to get the best of both worlds, even though you don’t always know what that will be.

With my son, I tried medication, briefly, as a last resort. I raised him in France, where there were a number of homeopathic options. I always try to look at the homeopathic solution first. Actually, I try lifestyle first, then a homeopathic solution, and then, if need be, medication.

Cooper: Do you ever think of going back to France?

Basinet: All the time.

Perhaps in some minor way, the experience of being medicated as a child drew me inward, where I found my voice and tapped into my own energy. But the process not only freed up my voice, but my ability to use it for those who don’t feel they have one. Like Oprah always says, “Nobody’s luckier than women in America,” and I

Cooper: Have you been able to visit since?

Basinet: A few times. But it’s so funny, I could have so easily wound up being stuck living in the Bay Area within a 30-mile radius from my ex. It could have been ABILITY 47

Basinet730b

7/30/07

11:44 PM

Page 48

such a different life. And it just took fighting every step of the way to get around all the constant roadblocks.

Cooper: What were you focusing on at the time?

Basinet: I wanted to get a song in the soundtrack of a movie before my son was 18.

Cooper: And you did that?

Basinet: Women do so much work, keeping a house, going to work, raising kids, home schooling some times, taking them to activities, a thousands things. I know there are a lot of dads that are doing their part, but it’s not something that’s rewarded in society.

I think that old-fashioned ideals worked. I think that women can’t dream if they don’t feel protected and safe.

Women don’t realize that when they’re in the work force, they’re swimming with sharks, you know?

Basinet: Yeah, by a month!

Cooper: So part of your overall mission is giving other people a voice?

Basinet: Beyond that, I want to help people step through their fears, and claim their authentic power. We have a lot of strength as individuals when we step out of the poo-poo-pity mode. We’ve been in therapy for 30 years.

We’re very, very powerful as a nation. If we’d use our minds to go for what we want instead of complain about what we don’t have, we’d rock.

Cooper: So it’s not just giving people a voice, but letting people know they have one in the first place?

Basinet: Right.

Cooper: And that would be a crooner’s voice?

Basinet: (laughs) Well—we’ve got a lot of crooners now.

Cooper: I read that you had come through an abusive relationship.

Basinet: That was somebody else’s perception of the situation. For me, it was happening when I was so young and then I had a small child, which really forced me to say, ‘I have to take control and complete responsibility for my own life and income and happiness and fulfillment.’

Whether it’s on a business level or a private level, and then they come home and—it’s a lot to handle. Society doesn’t really reward what makes a woman a woman and why we’re so valuable. It’s almost like you’re a sap. “Oh, that’s what you get for caring too much. Oh, you shouldn’t put others ahead of you.”

Well, that’s what comes with being a woman! I think our country could use a little more love—that’s why I sing love songs.

Cooper: Like “Santa Baby.” But isn’t that one pretty materialistic?

Basinet: I’ve never looked at it that way. I never looked at it like a gold-digger song. I don’t know if you saw the video I made, but I kind of looked at it like: There are so many women who are behind men, helping make their day go a little better. And it’s well-documented that men, on the whole, make more money, while women are more focused on taking care of the kids. I don’t care what country it is, there’s so much extra work that they do that they never get compensated for, and yet the male income increases. So sure, it would be nice if the wealth got spread around a little more.

Cooper: She’s asking for several things throughout the song.

Basinet: Like ‘a ring, and I don’t mean on the phone.’

Cooper: Did you get marraige counseling before you left?

Basinet: It wasn’t a situation where counseling would have helped, but I’m sure for others it can. Women’s roles have changed so much, and they have to do so much that it changes the dynamic in the relationship, and I don’t think we’ve been able to establish the right balance yet.

Cooper: What does that mean to you?

Basinet: I think the men have too much time on their hands to be sittin’ around playing on the internet. (laughs) Cooper: Only men have too much time?

48

ABILITY

continued on page 64

ABILITYjobs

7/30/07

11:50 PM

Page 49

ABILITY 49

PBB730.qxd

50

7/31/07

ABILITY

12:25 AM

Page 50

PBB730.qxd

7/31/07

12:26 AM

Page 51

I

n his new book, Patients Beyond Borders: Everybody’s Guide to Affordable, World Class Tourism, author Josef Woodman offers a comprehensive manual for how you can see the world and get many of your surgical needs met—all at a cost that may be cheaper than having the procedure done at your local hospital.

But that doesn’t mean you should start packing now.

Preparing for surgery overseas requires lots of homework. In this excerpt, Woodman tells you how to get organized.

Antigua, fertility diagnoses and treatments in South Africa, thalassotherapy in Hungary or restorative oral dentistry in Mexico.

Currently, at least 28 countries on four continents cater to the international health traveler, with more than a million patients visiting hospitals and clinics each year in countries other than their own. The roster of treatments is nearly as varied as the travelers.

When my father was 72, he traveled to Mexico for extensive dental work. When I first heard his plans, I felt a mixture of bewilderment and fear. But I knew that despite my protestations, he was going anyway.

Dad and his wife, Alinda, selected a U.S. trained dentist in Puerto Vallarta and paid around $11,000, which included two weeks of noodling around the Pacific Coast. They returned tanned and smiling, Dad with new pearly whites and Alinda with an impromptu skin resurfacing. In the States, Dad’s procedure would have cost him $24,000—double what it cost south of the border.

As baby boomers become senior boomers, they’ve begun to find that their health care and prescription costs devour nearly 30 percent of their retirement and pre retirement incomes. But with the word out about top quality treatments at deep discounts overseas, informed patients are finding they have an alternative. Uninsured and underinsured patients, as well as those seeking elective care, can realize 15-85 percent savings over the cost of treatment in the U.S., depending upon the country and type of treatment. Or, as one successful health traveler put it, “I took out my credit card instead of a second mortgage on my home.”

My dad was a health travel pioneer. In his day, finding quality care abroad was a far more arduous task than it is now. In a few short years, big government investment, corporate partnerships and increased media attention have spawned a new industry—medical tourism—which is bringing with it a host of encouraging new choices for patients. Individuals can now choose from a smorgasbord of safe, reliable options for diagnosis and treatment, ranging from dental care and cosmetic surgery to some of the more dramatic and expensive procedures, such as hip replacement or heart valve surgery.

A patient from Santa Ana, California, whom I’ll call Margaret, was quoted $6,600 for a tooth extraction, two implants and two crowns. One of the 120 million Americans without dental insurance, she had heard of less expensive dental care abroad. Through a friend, she learned about Escazu, Costa Rica, known for its excellent dental and cosmetic surgery clinics. Margaret got the same treatment in Costa Rica for $2,600. Her dentist was a U.S. trained oral surgeon, who used state of the art instrumentation and top quality materials. Add in airfare, lodging, meals, and other travel costs, and this savvy global patient still came out way ahead.

AN IMPARTIAL PERSPECTIVE

Then there’s a man I’ll call Doug S., a small business owner from Wisconsin, who journeyed with his wife, Anne, to Chennai, India, for a double hip resurfacing procedure that would have cost more than $55,000 in the U.S. The total bill, including travel for him and his wife, lodging, meals and two week recuperation in a five star beach hotel was $14,000. “We were treated like royalty,” said Doug, “and I’m riding a bicycle for the first time in six years. We could not have afforded this operation in the U.S.”

International health travel has received a good deal of attention of late. While one newspaper or blog giddily touts the fun ‘n’ sun travel side of treatment abroad, another issues dire, Code Blue warnings about filthy hospitals, shady treatment practices and procedures gone bad. My research has convinced me that with diligence, perseverance and good information, patients considering traveling abroad for treatment have safe choices, not to mention an opportunity to save thousands of dollars over the same procedure here in the U.S. Hundreds of patients who have returned from successful treatment overseas provide overwhelmingly positive feedback. They convinced me that I should write this guide to becoming a savvy, informed international patient. I designed it to help readers reach their own conclusions about whether and when to seek treatment abroad.

Last year, more than 150,000 Americans, Canadians and Europeans packed their bags and headed overseas for nearly every imaginable type of treatment: tummy tucks in Brazil, heart valve replacement in Thailand, hip resurfacing surgery in India, addiction recovery in

Big Surgeries: Comparative Costs in Asia and Southeast Asia Procedure US Cost India Thailand Singapore Malaysia Heart Bypass: $130,000+ $10,000 $11,000 $18,500 $9,000 Heart Valve Replacement: $160,000 $9,000 $10,000 $12,500 $9,000 Angioplasty: $57,000 $11,000 $13,000 $13,000 $11,000 Hip Replacement: $43,000 $9,000 $12,000 $12,000 $10,000 Hysterectomy: $20,000 $3,000 $4,500 $6,000 $3,000 Knee Replacement: $40,000 $8,500 $10,00 $13,000 $8,000 Spinal Fusion: $62,000 $5,500 $7,000 $9,000 $6,000

The above costs are for surgery, including hospital stay.

Airfare and lodging costs are governed by individual ABILITY 51

PBB730.qxd

7/31/07

12:26 AM

Page 52

preferences. To compute a ballpark estimate of total costs, add $5,000 for you and a companion, figuring coach airfare and hotel rooms averaging $150 per night.

For example, a hip replacement in Bangkok, Thailand, would cost about $17,000, for an estimated savings of $26,000 over treatment in the U.S. Dentistry: Comparative Costs in Popular Destinations Procedure US Cost Mexico Costa Rica South Africa Thailand Implants: $2,400 $1,500 $1,650 $2,000 $1,600 Dentures (upper and lower): $1,600 $1,000 $1,100 $1,700 $900 Crowns: $800 $375 $400 $800 $270 Porcelain Veneers: $800 $120 $160 $300 $240 Inlays and Onlays: $420 $220 $240 $320 $300 Surgical Extractions: $260 $120 $120 $250 $120 Root Canals: $750 $260 $280 $400 $110

The estimates above are for treatments alone. Airfare, hospital stay (if any) and lodging vary considerably. Savings on dentistry becomes more dramatic when “big mouth work” is required, involving several teeth or full restorations. Savings of $15,000 or more are common.

BETTER QUALITY CARE Veteran health travelers know that facilities, instrumentation and customer service in treatment centers abroad often equal or exceed those found in the U.S. In fact, governments of countries like India and Thailand have poured billions of dollars into improving their health care systems, which are now aggressively catering to the international health traveler. VIP waiting lounges, deluxe hospital suites, and staffed recuperation resorts are common amenities, along with free transportation to and from airports, low cost meal plans for companions and discounted hotels affiliated with the hospital.

Moreover, physicians and staff in treatment centers abroad are often far more accessible than their U.S. counterparts. “My surgeon gave me his cell phone number, and I spoke directly with him at least a dozen times during my stay,” said David P., who traveled to Bangkok for a heart valve replacement procedure.

Even the most robust health insurance plans exclude a variety of conditions and treatments. You, the policyholder, must pay these expenses out of pocket. Although health insurance policies vary according to the underwriter and individual, your plan probably excludes such treatments as cosmetic surgeries, dental care, vision treatments, reproductive/infertility procedures, certain non emergency cardiovascular and orthopedic surgeries, weight loss and substance abuse rehabilitation programs as well as prosthetics. In addition, many policies place restrictions on prescriptions, which can be quite expensive, as well as post operative care, congenital disorders and pre-existing conditions.

Facing increasingly expensive costs at home, nearly 40 percent of American health travelers hit the road for 52

ABILITY

elective treatments. In countries such as Costa Rica, Singapore, Dubai, and Thailand, this trend has spawned entire industries, offering excellent treatment and ancillary facilities at costs far lower than U.S. prices.

SPECIALTY TREATMENTS Some procedures and prescriptions are simply not allowed in this country. Either Congress or the FDA has specifically disallowed a certain procedure, or perhaps it’s still in the testing and clinical trials stage or was only recently approved. Such treatments are often offered abroad. One example is an orthopedic procedure known as hip resurfacing. For many patients, this represents a far superior, longer lasting and less expensive alternative to the traditional hip replacement still practiced in the U.S. While this procedure has been performed for more than a decade throughout Europe and Asia, it was only recently approved in the U.S., and the procedure’s availability here remains spotty and unproven. Hundreds of forward thinking Americans, many having suffered years of chronic pain, have found relief in India, where hip resurfacing techniques, materials and instrumentation have been perfected into a routine procedure.

Although traveling abroad for medical care can often be challenging, many patients welcome the chance to blaze a new trail and find the creature comforts offered abroad a welcome relief from the sterile, impersonal hospital environments of many U.S. treatment facilities. For others, simply being in a new and interesting culture lends distraction to an otherwise worrisome, tedious process.

Getting away from the myriad obligations of home and professional life can yield healthful effects at a stressful time. What’s more travel—and particularly international travel—can be a life changing experience. You might be humbled by the limousine ride from Indira Gandhi International Airport to a hotel in central New Delhi, struck by the simple, elegant graciousness of professionals and ordinary people in a foreign land or wowed by the sheer beauty of the mountain range outside a dental office window. As one veteran medical traveler put it, “I brought back far more from this trip than a new set of teeth.”

PLANNING YOUR JOURNEY If you decide that a medical trip is right for you, research several physicians, clinics or hospitals that offer the treatment you need. Don’t snap up the first option you find. Plan as far in advance as you can as well. Three months lead time is good. Six months is great. But one month is generally not sufficient time.

Here’s why: • The best overseas physicians are also the busiest.

That’s true everywhere. Just as in the U.S., doctors, surgeons and specialists abroad work 24/7, and their schedules are often established a month or more in advance.

If you want the most qualified doctor and the best care

PBB730.qxd

7/31/07

12:27 AM

Page 53

that your global patient money can buy, give the doctors and treatment centers you select plenty of time to work you into their calendars.

• The lowest international airfares go to those who book early. As veteran international travelers know, out of country prices rise savagely as the departure date draws closer. Last minute fares, reserved for family tragedies, rich jetsetters, and busy corporate executives, are the most punishing of all. Book treatment at least 60 days ahead to avoid this.

If you plan to redeem frequent flyer miles, try to book at least 90 days in advance—even if you’re not 100 percent certain of your treatment date. At this writing, many airlines don’t charge for schedule changes on frequent flyer fares, and you’re better off reserving a date—then changing it later—than being stuck without a reservation at all.

Similarly, for paid fares, it’s usually better to reserve your trip as far in advance as you can, giving your best guess at a schedule. Then, budget in the $100 penalty in the event you need to change your flight itinerary.

Before you can book that flight or reserve your hotel room, you must first confirm your treatment appointment. Before you do that, you’ll need to decide which country you want to visit, which physician(s) suit your needs, and more. An organized approach will save you time and money in the end.

THE TWELVEFOLD PATH TO ENLIGHTENED HEALTH TRAVEL PLANNING The following is culled from hundreds of interviews with patients and treatment center staff members around the world. Follow the steps and advice outlined here and you’ll streamline your planning, select the best physician(s), communicate effectively with staff and agents, save money and pack your bags with confidence.

STEP 1: CONFIRM YOUR TREATMENT OPTIONS Doctors often recommend a range of choices for a given condition and then leave the choice up to patients and their families. That’s wise, because your body is your own, and no one except you can or should make such vital decisions. Most physicians respect their patient’s autonomy. That’s why they usually stop short of advising you on a specific course of treatment.

If you have doubts about your diagnosis or feel dissatisfaction with your relationship with your physician or specialist, don’t be timid about seeking a second—or even third—opinion. At the very least, a second opinion expands your knowledge base about your condition. The more you and your hometown health team learn about— and discuss—your condition, diagnosis, and treatment options, the more precisely and confidently you’ll communicate with your overseas practitioners.

As you sort through treatment options and consider courses of action, learn as much as you can about your condition. You’ll get better care from your overseas practitioners if you are a knowledgeable and responsive patient. Request copies of all local consultations and recommendations in writing, along with cost estimates for treatment. Then begin a file for all paperwork related to your treatment and travel.

Note: To become the best possible patient—both at home and abroad—we highly recommend you buy, beg, or borrow and read—cover to cover—You: The Smart Patient: An Insider’s Handbook for Getting the Best Treatment by Michael F. Roizen and Mehmet C. Oz. These two physicians have written a witty, often irreverent, and highly useful guide to becoming an informed patient, whether in your doctor’s office or dentist’s chair, on the surgeon’s table or in an emergency room.

This 400 page consumer bible is packed with information on patients’ rights, surgical precautions, second and third opinions, health insurance plans, health records and precautionary advice.

STEP 2: NARROW YOUR DESTINATIONS Once you’ve determined the treatment you’re seeking, locate the destinations that offer it. (See chart below) Your search will likely produce a dozen or so places that offer, for example, excellent dental care. Great! Choice is good.You will now want to narrow your search based on your circumstance and personal preferences. For example, if you have a choice in travel times, you may prefer a cooler climate in Eastern Europe over the coastal humidity of Cape Town, South Africa. Or perhaps you speak a little Spanish and are more comfortable conversing with Costa Ricans than Croatians. For sheer travel convenience, a patient living in California or Oregon may prefer Mexico as a destination for dental treatment, while Costa Rica makes more sense to a Florida or Georgia resident.

The point is to narrow your options based on your travel preferences, geography, budget, time requirements and other relevant variables. To help you narrow your options, ask yourself these questions: • When do I want—or need—to travel?

• If I’m taking a companion, when can he or she travel?

• Can I sit through a 10 hour flight? An 18 hour flight?

• Do I have a preference for a hotter or cooler climate?

• If I’m planning on leisure activities while abroad, what types most interest me? Hiking? Museum hopping?

Shopping? Beaches? Night Life?

• How much cultural diversity can I tolerate?

FOR BIG SURGERIES, THINK BIG If you’re heading abroad for a liposuction or tooth whitening, you can skip this. However, if you’re going under the knife for

ABILITY 53

PBB730.qxd

7/31/07

12:28 AM

Page 54

• open heart surgery • any type of transplant • invasive cancer treatment • orthopedic surgery (including knee or hip replacement) • spinal surgery

with those in the U.S. Finally, ask your surgeon how many surgeries of exactly your procedure he or she has performed in the past two years. While there are no set standards, fewer than ten is not so good. More than 50 is much better.

you want to be certain you’re getting the best.Your life is at stake. For big surgeries, you should head to the big hospitals that have performed large numbers of exactly your kind of procedure, with the accreditation numbers and success ratios to prove it. A Joint Commission International [JCI] accredited hospital—such as Apollo in Chennai or Bumrungrad in Bangkok—carries the necessary staff, medical talent, administrative infrastructure, expensive instrumentation and institutional follow up needed to pull off a complex, larger surgery. They make it look easy. They’ve done thousands of operations like yours. It’s almost routine. You want that.

STEP 3: ENGAGE A GREAT HEALTH TRAVEL AGENT Good news: If you don’t want to do all the planning, research and travel arrangements yourself, you can secure the services of a health travel planner. A qualified agent is usually a specialist in a given region or treatment, with the best doctors, accommodations, and in country contacts at their fingertips.

THE WHAT AND WHY OF JCI When you walk into a hospital or clinic in the U.S., chances are good it’s “accredited,” meaning that it’s in compliance with standards and “good practices” set by an independent accreditation agency. In the U.S., by far the largest and most respected accreditation agency is JCAHO, the Joint Commission on Accreditation of Healthcare Organizations.

The commission casts a wide net of approval for hospitals, clinics, home health care, ambulatory services and a host of other healthcare facilities and services throughout this country. Responding to a global demand for accreditation standards, the Joint Commission launched its international affiliate accreditation agency in 1999, the Joint Commission International. In order to be accredited, an international healthcare provider must meet the same set of rigorous standards set forth in the U.S. by JCAHO. At this writing, nearly 100 hospitals outside the U.S. have been JCI approved, with more coming on board each month. JCI’s website carries far more information than you’ll ever want to explore on accreditation standards and procedures. To view JCI’s current roster of JCI accredited hospitals abroad, go to www.jointcommissioninternational.com. In the left column, click “JCI Accredited Organizations.”

A note about ISO: When researching hospitals and clinics abroad, you’ll often come across the phrase “ISO accredited.” Based in Geneva, Switzerland, the International Organization for Standardization is a 157 country network of national standards institutes that approves and accredits a wide range of product and service sectors worldwide, including hospitals and clinics. ISO mostly oversees facilities and administration, not healthcare procedures, practices, and methods. Thus, while ISO accreditation is good to see, it’s of limited value in terms of your treatment.

Be sure to ask about success and morbidity rates for your particular procedure; find out how they compare 54

ABILITY

Once you’ve settled on your health travel destination, it pays to seek out the services of that locale’s best health travel agent. Agents usually pay for themselves and are well worth the relatively modest fees they typically charge. The better health travel agents do all the work of a traditional travel agent and more, including some or all of the following: Match you with the appropriate clinic and physician(s): In addition to weeding out bad apples, the best agents have years of experience with treatment centers, physicians and staffs, and are in a position to find the best fit among a variety of choices. Because the agency’s success depends on references from satisfied customers, top agents work hard to make the physician patient relationship a good match from the start.

Arrange and confirm appointments. Once you’ve selected or approved a physician, the agent can handle the details of making appointments for consultations, tests and treatment. Agents know all the assistants and aides; they can push the right buttons to fast track your arrangements.

Expedite the transfer of your medical information. Your agent can work with you and your physicians at home and abroad to relay medical data, including history, xrays, test results, recommendations and other documentation. Agents can help you get data into the right format for emailing or help you determine the best way to ship documents.

Book air travel. Agents sometimes have arrangements with airlines for good deals on airfares, and booking international flights is usually a standard part of an agent’s service offering.

Obtain visas. For a relatively modest fee, a health travel agent can help you avoid the hassles of purchasing a visa (if required), update your passport, procure tourist cards and hound the appropriate embassy for service.

Reserve lodging and other accommodations. These folks can work with your budget and lifestyle preferences to put you in touch with hotels closest to your treatment center; they’ll often book reservations and arrange amenities such as private nursing care. Many

PBB730.qxd

7/31/07

12:28 AM

Page 55

agents have forged partnerships with hotels for discounted rates.

Arrange in country transportation. Most agencies either provide transportation from the airport to your hotel or treatment center, or they work directly with the hotel or hospital to arrange transport. If transport is required between your hotel and treatment center, they’ll also help with arrangements.

Help manage post treatment procedures. Agents can be hugely helpful at the point of discharge from your treatment center, ensuring that your exit paperwork and other documentation are in order.

Help with recovery and recuperation. Little publicized and often overlooked are the recovery resorts, surgical retreats and recuperation hotels that can make a week or two of post treatment more bearable—sometimes even enjoyable. Agents know all about facilities in their area and work in close partnership with the better ones. The international travel services coordinator at your hospital can also help on this front.

Help with leisure activity planning. If you and your companion are up for a pre or post treatment trip, most agents offer assistance with side trips, car rentals, hotels, restaurants, and other travel amenities.

as supportive and complimentary of your companion as you can possibly be. Your companion is a treasure. Cherish the relationship.

If you’ve already found a willing and able companion, you are blessed. Be sure to involve him or her in the early planning stages. That’s the best way to cement the relationship and to learn at the outset if you’ll be compatible. Ask your companion to accompany you to the doctor, help with second opinions and make initial international inquiries. You’ll begin to work as a team. If you don’t feel comfortable at the early stages, find a cordial, diplomatic way to part company

STEP 5: FIND DR. RIGHT For most folks considering a medical trip abroad, this step is the most challenging—and perhaps the most emotionally charged. Yet if you follow a few basics and caveats, you’ll find the process far less mysterious and daunting. Remember, the final choice in selecting a physician—like the decision whether to travel at all— remains in your hands.

Here are some tips to aid you in your search: Insist on English. While this advice may sound provincial and harshly xenophobic, if English is your only tongue, then insist that the parties you’re working with speak only English. Your health is too important to risk important information getting lost in translation.

STEP 4: CHOOSE A Some hospitals have the latest hi-tech equipment RELIABLE, CAPABLE— Don’t settle for poor English. Do your best to listen and AND FUN!—COMPANION understand, but if you find yourself constantly asking Folks who journey to far flung places for medical treatpeople to repeat themselves, don’t blame yourself. Hosment fare much better with a companion than if they go pitals, clinics, and agents who cater to an international solo. Whether a mate or friend or family member, the clientele will have English speaking staff. If not, then right companion can provide great help and support apologize graciously for your lack of language skills before, during and after treatment. Together, you two and move on. may also add in some fun and adventure when your health permits.

Seek Dr. Right, not Dr. Personality. OK, if a practitioner candidate is downright rude to you, then move on, but Most health travelers choose either a good friend or otherwise, give your physician some “personality latispouse as companion. If you have the luxury of choice, tude” at least initially. Focus on skill sets, credentials, make sure you’re not packing a lot of emotional baggage and accreditations, not charm. for the trip. The successful medical journey requires large and prolonged doses of support. In an ideal world, Even in this country, many of the finest medical practiyou should get on fabulously with your capable, reliable tioners are technicians. While they may love what they and fun companion. He or she should have good organido and be quite good at their chosen specialty, their perzational skills and remind you to bug the travel agency sonal presentation skills may be lacking. This is doubly for your passport renewal application, help you organize true where language and culture create additional social and email your medical documentation, keep track of awkwardness. your in country appointments, monitor your post treatment prescription regimen, encourage you to follow your docUse your judgment and give the charm factor—or lack tor’s orders, and assist with myriad other tasks that call of it—the benefit of the doubt. If credentials and other for sustained bouts of left brain activity. Remember to be

ABILITY 55

PBB730.qxd

7/31/07

12:29 AM

Page 56

criteria check out, and if you’re otherwise comfortable with your choice, then charm and personality can probably take a back seat.

Expect good service. Although patience is often required when corresponding with international healthcare providers, rudeness should never be excused, and no culture condones it. If anything, you’re likely to encounter greater courtesy and graciousness abroad than here. If parties on the other end appear rude or indifferent, move on.

In corresponding with hospitals and clinics overseas, you will often find yourself directly in contact with your physician or surgeon. The good news is that you’re engaged in a real dialogue with the professional who will be treating you. The downside is that he or she is probably very busy. Expect delays—sometimes two or three days—between email exchanges. If longer, then politely, but firmly, request a response.

Ten “Must Ask” Questions for Your Physician Candidate

Some hospital lobbies look more like a hotel lobby

Make the following initial inquiries, either of your health travel agent or the physician(s) you’re interviewing. Note that for some of these questions, there’s no right or wrong answer. Your initial round of inquiry will help establish a dialogue. If the doctor is evasive, hurried, or frequently interrupted, or if you can’t understand his or her English, then either dig deeper or move on.

1) What are your credentials? Where did you receive your medical degree? Where was your internship? What types of continuing education workshops have you attended recently?

The right international physician either has credentials posted on the Web or will be happy to email you a complete CV. 2) How many patients do you see each month? Hopefully, more than 50 and less than 500. The physician who says, “I don’t know,” should make you suspicious. Doctors should be in touch with their customer base and have such information readily available.

3) To what associations do you belong? Any worthwhile physician or surgeon is a member of at least one medical association. Particularly in areas where formal accreditation is weak, your practitioner should be keeping good company with others in the field. For example, if you’re seeking cosmetic surgery in Mexico, your surgeon should be a member of the Mexican Association of Plastic, Reconstructive and Aesthetic Surgery. It’s also a plus to see physicians who are 56

ABILITY

members of, or affiliated with, American medical or dental associations.

4) How many patients have you treated who have had my condition? There’s safety in numbers, and you’ll want to know them. Find out how many general procedures your hospital has performed. Ask how many of your specific treatments for your specific condition your doctor has personally conducted.

While numbers vary according to procedure, five cases is not enough. Somewhere between 50 and 200 is more like it.

5) What are the fees for your initial consultation? Answers will vary, and you should compare prices with other physicians you interview. Some consultations are free; some are deducted from the bill, should you choose to be treated by that physician; some are a straight nonrefundable fee. In any event, it pays to have this information in advance.

6) May I call you on your cell phone before, during and after treatment? Direct and personal access to your doctor is foreign to the American experience. Yet most international physicians stay in close, direct contact with their patients, and cell phones are their tools of choice. When physicians aren’t treating patients, you’ll find cells or headsets glued to their ears.

7) What medical and personal health records do you need to assess my condition and treatment? Most physicians require such basics as: recent notes and recommendations from consultations with your local physician or specialists, x-rays directly related to your condition, patient history and other health records. Be wary of the physician who requires no personal paperwork.

8) Do you practice alone or with others in a clinic or hospital?

“Safety in numbers” is a good bet on this front. Look for a physician who practices among a group of certified professionals with a broad range of related skills. For example, your initial consultation might reveal that you need a dental implant instead of bridgework, and it just so happens that Dr. Guerrero down the hall is one of the country’s leading implantologists.

Or, on a return visit, your regular doctor is on vacation, but Dr. Cho who’s available in the clinic can access your history and records, check your progress and help you determine your next steps.

Prior to surgery: 9) Who’s holding the knife during my procedure? Do you do the surgery yourself, or do you have assistants do the surgery? This is one area where delegation isn’t desirable.

You want specific assurances that all the trouble you went through to find the right surgeon isn’t wasted because the procedure is actually being performed by your practitioner’s able protégé.

10) Are you the physician who oversees my entire treatment, including pre-surgery, surgery, prescriptions, physical therapy recommendations, and post surgery checkups? For larger surgical procedures, you want the designated team captain.

While that’s usually the surgeon, check to make sure.

PBB730.qxd

7/31/07

12:29 AM

Page 57

STEP 6: GET TO KNOW YOUR HOSPITAL OR CLINIC Before you start booking air travel and accommodations or planning the more relaxing parts of the trip, do some sleuthing, beginning with your treatment center.

Although detail driven, this investigation is not as daunting as it sounds, and most of your research involves simple fact checking. Here’s what to do and how: Check hospital accreditation. If you’re looking into a treatment that requires hospital care, check to see whether the center is JCI accredited. While JCI accreditation is not essential, it’s an important new benchmark and the only official American seal of approval. Learning that your treatment center is JCI approved lends a comfort to the process, and the remainder of your searching and checking need not be as rigorous. That said, many excellent hospitals abroad, while not JCI approved, have received local accreditation at the same levels as American approved treatment centers.

Check for affiliations and partnerships. Did you know that many of the best overseas hospitals enjoy close partnerships with universities and U.S. medical centers?

For example, Gleneagles Hospital in Singapore has a working partnership and information exchange program with Johns Hopkins Hospital in Baltimore. Similarly, Malaysia’s Pantai Medical Center has forged working partnerships with Duke University Medical Center and the Cleveland Clinic.

Learn about success rates. Although smaller clinics don’t offer such information, the larger and more established hospitals freely publish their “success rates” or “morbidity rates.” These are usually calculated as a ratio of successful operations achieved to overall number of operations performed.

For larger surgeries (such as cardiovascular and orthopedic), success rates of 98 plus percent are on par with those found in the U.S. For the more common surgeries, you should further investigate any rates under 98 percent.

Learn about number of surgeries. Most large hospitals will happily furnish information on numbers of surgeries performed. Generally, the more the better, for there’s safety in numbers on this front. For example, the Manipal Heart Hospital in Bangalore, India, has performed more than 14,000 cardiac surgeries in the past five years, with a success rate of 98.8 percent. You will rest easier on your outbound flight knowing that your destination hospital has performed large numbers of procedures with high success rates.

STEP 7: FOLLOW UP WITH CREDENTIALS Once you’ve located one or two competent physicians, be sure to obtain their resumes. Many physicians post such data on the Web. If yours don’t, then request that your doctors or your health travel agent send you full background information, including education, degrees,

areas of specialty, number of years in practice, number of patients served, and association memberships.

Get references, recommendations, and referrals. If possible, speak with some of the doctor’s former patients to get their feedback. Understandably, many former patients wish their privacy respected, and international law protects us all in that regard. Thus, it’s often difficult for a physician to put you in direct contact with a former patient.

If you’re unable to talk with former patients, ask your physician to provide you with testimonials, newspaper or magazine articles, and letters of recommendation—in short, anything credible that will help assess this individual’s expertise. If you’re using the services of a health travel agency, ask your representative to check credentials and background of physicians to help you narrow your search.

Specifically, here’s what you’re looking for: Education. Universities, medical schools attended, degrees held and when awarded. Any special achievement awards or honors.

Certification. Exactly what is this physician licensed to practice? If you’re having implants done, then you want a certified implantologist’s fingers in your mouth.

Professional history. How long has he or she been practicing, and where? If a surgeon, how many surgeries have been performed, and what types of procedures?

Information on presentations, publications, honors, and awards gained along the career path will help you evaluate a doctor’s talent, performance, and commitment to his trade.

Affiliations. With what medical and related associations are your physician affiliated? Information about community involvement is useful as well.

Continuing education. Mandatory in many countries, continuing education helps a physician stay abreast of new trends in his or her field. Most good physicians travel at least once a year to accredited conferences and workshops. Find out where your doctor goes and how often.

Patient references and letters of recommendation. Nearly as useful as professional histories are reference letters or letters of recommendation from patients, colleagues, or other credible sources.

If you’ve not engaged the services of a health travel agent, ask your physician or medical staff to email you a copy of your doctor’s resume or CV. If you want to take your search a step further, contact the universities, associations, and references listed in the resume to verify authenticity.

ABILITY 57

PBB730.qxd

7/31/07

12:30 AM

Page 58

STEP 8: GATHER YOUR MEDICAL RECORDS AND CONSULTATION DATA Once you’ve established a relationship or scheduled a consultation with one or more overseas physicians, they’ll probably ask to see supporting information.

Such data usually include the following: • reports or written recommendations made by your local specialist related to your condition • x-rays or imaging reports from your specialist’s office or your radiology lab • test results from your specialist’s office or third party laboratories Depending upon your treatment, some physicians may ask for additional data, including your general medical history, health record, or pathology reports from previous treatments.

Some patients are timid about requesting health information from their doctors. If you’re one of those people, it’s important for you to know that as of April 2003, any physician, surgeon, specialist, hospital, or laboratory you visit is required by law to provide you copies of any and all medical information they’ve compiled about you. These data include consent forms, consultation records, lab reports, test results, x-rays, immunization history, and any other information compiled as a result of your visits. Although most won’t, your doctor or laboratory has the right to charge you a nominal fee for making copies.

These days, more and more medical information is going digital, particularly all important x-rays and other imaging data. When you request your medical records, ask staff to email you the data in digital form and to provide you with a hard copy as well. If you can obtain only hard copy documents, then have them scanned. If you’re uncomfortable with technology and computers, perhaps your companion or friend or family member can tweak the paperwork into computer files into the form of an electronic file (scanning is not time consuming for those who know how to do it). A full service copy shop or office supply center can convert hard copy paperwork to digital files for a nominal fee, and you’ll save real money over international courier rates if you transmit via email. Overseas physicians generally prefer digital records, particularly x-rays, which are easier to study and manipulate.

STEP 9: PLAN YOUR RECUPERATION AND RECOVERY For patients abroad, the days or weeks you spend post treatment can be particularly difficult. Perhaps you’ve been on the road vacationing prior to treatment, and you’re ready to head home. Or seemingly urgent work challenges are piling up back at the office. Or you’re just feeling far away and becoming homesick.

Any surgeon, dentist, or other medical specialist can tell you that if complications are to develop, they’re most likely to occur in the first few days following treatment.

58

ABILITY

That’s the time when your body is doing everything it can to compensate for the stress and trauma of your treatment. Rest and a healthful lifestyle are essential during recovery, but in these busy, overworked times, many people don’t take recuperation as seriously as they should. At the first glimmer of normalcy, we’re off and running again.

Do yourself and your loved ones a big favor: follow your doctor’s post treatment orders, allowing your body and spirit time to return to health. It’s not that much more time out of your life. For extensive dental work, recovery is usually a matter of a few days. Even the more invasive surgeries have you back to something approaching normalcy within a couple of weeks.

You might be surprised—and encouraged—to learn that many international health travelers enjoy recovery and recuperation accommodations not available in the US. Recovery resorts, surgical retreats, hospital residences, and a host of other options are available in many of the destinations featured in this book. Services offered include: • on-site medical staff to assist with bathing, getting in and out of bed, physical therapy, medication, & more • gyms and other accommodations for physical therapy and daily exercise • room service for meals and laundry • Internet access • liaison with hospital Another big plus for recovery accommodations is the company you keep. The guests are people like you who have recently undergone treatment. There’s comfort in sharing experiences, and dinner table conversations with fellow patients can yield a wealth of medical tips and travel advice. If recovery retreats are not offered in your region of choice, ask your health travel planner or hospital for recommendations on hotels or apartments nearby.

STEP 10: CREATE YOUR HEALTH TRAVEL VACATION For most health travelers, vacations take a back seat to treatment and recovery. Many simply don’t have the time or the motivation to tack a vacation onto an already time consuming health travel trip. Some patients require more invasive procedures with longer recovery and the planning alone (not to mention the usual discomforts of recuperation) knock a beached whale Riviera jaunt clean out of the picture.

Medical travelers planning for less demanding treatments, such as light cosmetic surgery or nonsurgical dentistry, should take a brief inventory of their treatment schedule and time requirements. Ask the following questions: • How many appointments does my treatment require?

• How long is my expected recuperation period?

PBB730.qxd

7/31/07

12:31 AM

Page 59

• How long need I remain near my treatment center during my stay?

Unexpected tests, appointment reshuffles, and travel delays can eat up leisure time. As a rule, the treatment part of your trip will probably be three or four days longer than your appointment schedule indicates.

Whether you can work in a vacation or not, the most important consideration is your health. Focus on your treatment and try not to bite off too much. Remember that you can always take that vacation later, happily spending the money you saved by being treated abroad.

STEP 11. BE TRUE TO YOUR BUDGET Be sure also to give your health travel representative a good idea of your budget. You might be surprised to learn that hotel rooms in developing countries can cost as much as the best accommodations in New York.

Confirm rates and amenities before pulling out your credit card.

The same holds true for airfares.

First-class and business-class fares are usually quite punishing; they’re reserved for jetsetters, corporate executives, and frequent flyers. If you don’t mind traveling coach or economy class, you’ll save a bundle.

If you’re making your travel plans on your own, ask your physician to recommend some hotels nearby. Some of the larger hospitals have partnerships with hotels at discounted rates. Such information is often posted on their Web sites.

Just Ask When it comes to asking for special assistance from the airlines, many travelers believe they must be severely handicapped to request a wheelchair or some other service. And some folks are just shy about asking for help or embarrassed to be wheeled around airport corridors and jetways.

Get over it! If you’re heading to India for hip surgery and you’ve been in chronic pain for three years, there’s no shame in requesting a wheelchair, and every airline company we contacted ministers happily to medical travelers. In the same vein, if you’re still feeling the effects of surgery on the return trip, it’s perfectly reasonable to request wheelchair assistance.

STEP 12: TRIPLE CHECK DETAILS AND DOCUMENTS In addition to ensuring that the kids, dog, and other loved ones are looked after in your absence, it’s crucial on a medical trip to remember to take everything that you and your companion will need. Unlike forgetting your favorite tie or blouse, leaving important documents behind can create unnecessary hassles on the other side of the world. Make sure you have all your paperwork in order, including travel itinerary, airline tickets or etickets, passports, visa, immunization records, and plenty of cash for airport taxes and other unexpected expenses.

Be sure to pack all medical records, consultation notes, agreements, and hard copies of email correspondence.

Also remember to take the telephone numbers, fax numbers, and email addresses of all your contacts, at home as well as in country.

Pack Smart You’ve likely heard the cardinal rule of international travel: pack light. Less to carry, less to lose.

Don’t worry if you leave behind some Some hospital rooms feel basic item like shammore like a hotel room poo or a comb. Once abroad you can always buy essential items you may have forgotten, and picking up socks or toothpaste is a great excuse for you or your companion to hit the local market.

That said, below are several items you absolutely, positively shouldn’t forget: • Passport • Visa (if required) • ATM card or travelers’ checks, plus enough cash to handle unexpected expenses • Prescriptions you’re taking • Hard to find over the counter drugs you’re taking • Alcohol based hand sanitizing gel (for cleaning hands while traveling) • Your medical records, current x-rays, consultations, and notes • Phone numbers, postal addresses, and email addresses of people you need or want to contact at home or in country www.patientsbeyondborders.com

Airlines ask that you or your companion request a wheelchair 48 hours prior to the trip. Then, when you arrive at the airport, check in with the skycap at curbside, where a wheelchair is usually nearby. Remember to tip folks who assist you a few dollars; they’ll appreciate the gesture and remember you the next time your paths cross.

ABILITY 59

tom olin726a

7/31/07

12:38 AM

Page 60

Tom had been strategic in planning his accommodations for his assignment to cover the 2006 United Nations Caucus on the Rights of Persons with Disabilities. Since the convention would be two weeks, he calculated that it would be more economical to rent an apartment than reserve a hotel room. The fact that he actually found an apartment in New York is what confirms either his uncanny resourcefulness or his good luck.

Tom gestured that I should make myself at home on a chair, which he pulled in from the kitchen as he pried open the window to balance the humidity inside with the humidity outside. “Ah, yes. That’s better,” he said.

Then he sat down at the “smart-techno-person” station he had established in the living room and asked, “So, what do we get to talk about?”

I

t was a humid autumn night in New York. The volume began to lower on those finishing up the workweek, and rise on those welcoming a night on the town. One could hear the streets sing a melody all their own: horns honking in seemingly well-rehearsed rhythms; slivers of conversation chiming in from passing couples; and music wafting through the open doors of neighborhood clubs.

At no more than half-past five, lines had already formed outside popular restaurants, and Broadway, a mere jaunt down the street, was coming to life.

I passed all these enticing options without giving pause, for I was excited by what I had in store. I’m almost there, I thought to myself. But I felt a bit of doubt: A sense of direction isn’t my strongest suit. So I pulled out my cell phone and asked my speed dial to call Tom Olin.

He came on the line and reassured me: “You’re almost here, hon. Another block straight ahead. I’ll be…” and just as he said that my eyes traced his outline “…waiting on the corner.”

There he was: a tall, slender silhouette wearing faded blue jeans, a ‘Disability Pride’ T-shirt and his hair pulled back in a thin, ponytail. He waved, smiling.

Though we had last seen each other and chatted only hours earlier at a United Nations Disability Rights Caucus, we greeted one another with a bear hug. It was our tradition.

Another half block down the street, we arrived at our destination, a door next to a cigar shop. I followed as we walked down a hallway, climbed a few flights of stairs and moseyed down another hallway. Finally, we approached a door marked: 4C.

60

ABILITY

Sitting across from him, I became unexpectedly overwhelmed as it dawned on me: This is Tom Olin, the photographer extraordinaire who has worked for over 20 years documenting the Disability Rights Movement.

His work has appeared in newspapers, magazines, textbooks, web pages, museums and art shows worldwide.

Goodness gracious, where was I to start? My list of questions for him lengthened as quickly as a cash-register receipt during a shopping spree. I took a deep breath.

“Well,” I said, “how did you get to be the primary photographer to chronicle disability history as it’s been made?”

He gently chuckled, took a deep breath and let out a “hmmmm…” Then he shared with me story after story from his memories, which are the makings of a human history book. He told me how his dyslexia played a role in preventing him from going to college because he couldn’t get the necessary accommodations. At the time, not only was it not required of post-secondary institutions to provide accommodations, but many schools and their faculty never even gave it a thought.

Tom mentioned how he retreated to Canada in the 1970s to resist being drafted. While he acknowledged that there are, indeed, times when force must be called upon to ignite action, he theorizes that, to this day, “love will find a way.” He made comparisons between the international conflict in the ’70s and the progression of the Disability Movement, noting the similarities of society’s perception of such actions, and how our obligation to educate the larger community of such realities is affected as a result.

He told of how policymakers and grassroots organizers in 1990 united in the Rotunda of the Capitol Building in Washington, DC, to advocate for signing the Americans with Disabilities Act (ADA); how the Supreme Court reacted to the first “Not Dead Yet” rally; how people chained themselves to the White House fence on more than one occasion to fight for equal rights; how advocates within one state successfully negotiated in state

tom olin726a

7/31/07

12:39 AM

Page 61

officials’ chambers for enactment of their rights, while advocates in other states blocked the doorways to state chambers because their rights were being denied. I sat there listening like a girl whose eyes were fixed on her favorite movie, waiting for more.

Tom’s hand stayed attached to the mouse that connected him to Photoshop and his pictures of the United Nations forum, but suddenly he paused and gazed out the window.

“You know those were such important times,” he looked wistful, as if the memories were all coming back to him. “People sacrificed a lot. We had the moral right and the moral obligation to protest for change. We finally came together as a community to make these rights public. In most cases this was the first time the American press could see that there was actually vocal and effective opposition to what was going on in our country.” His eyes moved from the window and linked with mine. “We were being the most American of Americans at those moments.”

There was silence as I absorbed what he said, and then he went back to fiddling with the photos of global community leaders on his computer. In his years of taking pictures, his photographic equipment has evolved from a 35-millimeter camera and some extra roles of film to a digital single-reflex-lens camera, two computers, lots of cords and a collection of DVDs and jump drives.

“So, what still stands in our way?” I asked, referring to the Dis Movement.

His head popped up: “We stand in our way!” This was the most abrupt response I had heard from this man who is generally quite laid back. “We stand in the way of our own Community all the time! We talk about inclusion, but do we practice it? What about people with augmented speaking devices? What about those with psychiatric disabilities? What about young people, for heaven’s sake!” His voice accelerated in speed and volume. “You know, sometimes we are our own biggest enemy. Sometimes it’s easier to take on a situation by yourself rather than taking others with you. But sooner or later people will have to realize that when you do that, only one person learns the lesson.”

I wrote as fast as I could, my hand beginning to feel as though it would never detach from my pen.

“I mean, take young people for example,” his voice came back down to the tone and speed of the Tom I was used to hearing. “We need to transition from ‘Generation A’ to ‘Generation B,’ and we need to make that change quickly. I yell at my generation for not putting more young people into power right now so we can learn from one another. And I feel terrible about it, because I just don’t see young people being connected to the Movement and to each other. Our Community talks about inclusion all the time, but we need to realize that this also ‘includes’ age.”

I glanced down at my notes, hoping I’d later be able to decipher what looked like a bunch of scribbling.

“I used to say when the ADA was being passed that it was like the Emancipation Proclamation. Yet right now the courts are forgetting what the ADA is for, which means that we didn’t fight for it long enough or hard enough the first time. In fact, we may have to fight for it all over again, and to do that we’ll need to depend on our youth allies.”

I commented how his vision about educating, empowering and collaborating with ‘Generation B’ virtually duplicated what was on the wish list of a quickly growing sub-community of young leaders in the Movement. “So, Tom, what else besides this shared issue is on your wish list?” I asked.

He rattled off: people with disabilities working within businesses and organizations where they can grow and become leaders, rather than remaining stagnant in one job; continues on page 65 ABILITY 61

Basinet730b

62

7/30/07

ABILITY

11:45 PM

Page 62

puzzle Ty

7/31/07

12:09 AM

Page 63

ACROSS 1. Champion for a cure for ALS 6. Actress Penelope ____ who founded the Sabera Foundation 9. Wander about 10. Boat 11. Mary Tyler ___ , spokesman for the Juvenile Diabetic Association 13. Sweet potato 15. Mediterranean is one 17. Unhappy 18. Try out 21. She sang “Strong enough” 23. Poet __ Eliot 27. Curve 28. Blind singer who became a megastar 32. Singer, Sayer 34. Cut off by society 38. Marlee Matlin Terrylene wrote “___ Child Crossing” 39. ___ Marie Presley 40. Medical man 41. HIV prevention champion ___ Johnson 43. ___ Gehrig’s disease 44. Two time 46. “__ t’aime” 48. “My name is ___ “- show that earned a TV award at the 2006 Media Access awards 49. Tolstoy novel “___ Karenina” 50. Goodwill ambassador for the National Down Syndrome society, Chris ____ 52. Resume 53. Agreed!

54. Actor and Anemia Life spokesman, Danny 55. Superman actor, Christopher

DOWN 1. Major League pitcher played with only one hand 2. Young ladies 3. “All my ___ live in Texas” 4. Girl’s name 5. Duos 6. Company, for short 7. Blind jazz singing great 8. “Kill Bill” star __ Thurman 9. “The Hunt for ___ October” 12. Unprocessed 14. This organization successfully funded polio research and this led to a cure 16. Much maligned alien 19. Snaky letter 20. Golf locale 22. Medical show 24. See 25 across 25. Blind singer who sang “Light my fire” 26. President who battled polio, abbr.

29. Young kids 30. Through 31. “The Color Purple” star Whoopi 33. Each for short 35. “To __, with love” Sidney Poitier’s movie conquering racial discrimination 36. Computer’s memory 37. ADA champion, Bob ____ 42. Morning 45. Threesome 46. _____ Seymour 47. Strive for 49. Voice 50. Beverly for short 51. Falcon movie 52. “The right way to __ is to __” Anon ABILITY 63

Basinet730b

7/30/07

11:46 PM

Page 64

continued from page 48

Cooper: So it gets back to marriage.

Basinet: Yeah, marriage and security. And I don’t mean security in some boring way, I mean that you come home and someone’s got your back. Or your front.

Cooper: I’m not gonna make any jokes there… Actually, several of your songs have a home-front theme. One is about the fireplace.

Basinet: “You’d Be So Nice To Come Home To.” That’s kind of like, ‘You take care of this and I’ll take care of that, and somehow it’s more peaceful for the both of us.’

And then when that’s happening, there’s more love, and it keeps building.

Cooper: What did you sing when you were in the Sudan?

Basinet: “Someone To Watch Over Me.”

N

S

W

E

R

S ABILITY

A

64

tom olin726a

7/31/07

12:39 AM

Page 65

continued from page 61

having more disability leaders active in the media industry; and empowering young leaders to take control.

“These are some of my current priorities, I guess,” he mumbled, with his eyes still transfixed on the computer screen. “It’s hard to have a wish list when you’re fighting a fight all the time. Usually, we have to just work with the challenges that are thrown in front of us. But in the meantime, we have to hope that our friends will fill in the gaps we leave along the way…as people and as a Movement.”

“Tom,” I asked, “how can you do all that you do, go everywhere you go, and not get burned out?” He looked at me, silent, as though I had said something in a language he didn’t understand.

“Burned out?” he questioned. “How can one get burned out? I have never been burned out. Sometimes one may get overwhelmed or sometimes one may need to take a break. But if you get ‘burned out,’ you need to take another look at your mission.” I raced to jot down what he had said. “We are fighting a war with humanity, hon, with human rights. And how can we get burned out when fighting the good fight? It’s all about equality.”

“So, is that what your photos represent,” I asked, “our fight for equality?”

“Everyone can evoke change,” he said, still doodling with photos on the screen. As he diversified the color contrast of a photo showing Nigerian representatives at the caucus conversing about their notes from the day, he continued: “I will always search for ways that people can see the empowerment within themselves. I have the opportunity to show the world that people with disabilities who fight for their rights are wise people; they can be learned from. I’m glad that I’m able to let people know that people with disabilities are powerful people. We don’t need to be pitied. We shall overcome.”

He looked at me. “You know that song, ‘We Shall Overcome,’ don’t you?”

“Uh-huh” is all that came out as I tried to soak everything in.

“Well, maybe that is how I will answer your question about what my photos represent,” he said, his voice tranquil. “Our struggle has been long, and it will be longer. But at some point it will bear fruit.” He chuckled ever so lightly.

“Not in my lifetime, that’s for sure. There’s a long way to go. But even when I’m no longer around, my photos—the trials and the accomplishments and the lessons and the struggles and the victories that they represent—will be.”

Then, as though our conversation had just begun, he said: “So, what are your plans for dinner?”

I looked out the window. It was dark outside and a cool breeze drifted in. When had the sun set? When had the humidity disappeared? When had my stomach started to growl?

“Dinner?” I said with a smile. “No plans.” I closed my notebook. “What did you have in mind?”

by Betsy Valnes Betsy Valnes is an active member of the disability movement both in the US and abroad. She currently serves as the executive director for the National Youth Leadership Network, and also works as a mentor with the National Council on Disability. Valnes has traumatic brain injury and anomia. Her disability-related skills include human rights training, inclusive practices, advocacy techniques and transitioning young people with disabilities from school to careers. Valnes’ business, New Voice-New Vision, offers public speaking, facilitation of conferences, work groups and planning councils. www.newvoice-newvision.com ABILITY 65

72807

66

7/29/07

ABILITY

3:09 PM

Page 66

72807

7/29/07

3:10 PM

Page 67

E v e n t s

&

C o n f e r e n c e s

ABILITY 67

72807

7/29/07

3:11 PM

Page 68

E v e n t s

68

ABILITY

&

C o n f e r e n c e s

72807

7/29/07

3:11 PM

Page 69

72807

70

7/29/07

ABILITY

3:12 PM

Page 70

72807

7/29/07

3:12 PM

Page 71

E v e n t s

&

C o n f e r e n c e s

ABILITY 71

72807

7/29/07

3:13 PM

Page 72

E v e n t s

72

ABILITY

&

C o n f e r e n c e s

72807

7/29/07

3:13 PM

Page 73

E v e n t s

&

C o n f e r e n c e s

ABILITY 73

72807

7/29/07

3:13 PM

Page 74

Ty Ads

7/29/07

7:22 PM

Page 75

ABILITY 75

Ty Ads

76

7/29/07

ABILITY

7:22 PM

Page 76