ABILITY Magazine - Lainie Kazan by ABILITY Magazine

THE VOICE OF OVER 50 MILLION AMERICANS

Volume 2008 LAINIE KAZAN AUG/SEPT VOLUME 2008 LAINIE KAZAN AUG/SEPT

$4.99

MAGAZINE

ABILITY

ABILITY 3

M ANAGING E DITOR Pamela K. Johnson

M ANAGING H EALTH E DITOR E. Thomas Chappell, MD

H EALTH E DITORS

Gillian Friedman, MD Larry Goldstein, MD Natalia Ryndin, MD

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

E DITORS

SENATOR HARKIN — Global Disability Rights

GREEN PAGES — Solar Garden Lighting; Vegan Shoes

HUMOR — Get Off the Couch and Get a Hobby

MANAGING PAIN — The Latest On Headaches

MOBILITY ISSUES? — Try A Trike

ALL REVVED UP — Teryx Off-Roading in Iowa

CAMBODIAN SPORTS — Athletes With Disabilities Rule!

MARTIN KLEBBA — Larger Than Life

QUID PRO QUO — A Film About the “Wannabe” Disabled

LAINIE KAZAN — Four Decades In the Spotlight

LOOKING FOR LOVE? — Try One of These Dating Sites

SPINAL CORD INJURIES — New Possibilities

CROSSWORD PUZZLE — Guess Your Best

DRLC — Got Cancer? Know Your Rights

EVENTS & CONFERENCES

SUBSCRIBE TO ABILITY MAGAZINE

Dahvi Fischer Renne Gardner Sonnie Gutierrez Eve Hill, JD Glenn Lockhart Josh Pate Denise Riccobon, RN Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff

C ONTRIBUTING W RITERS

Close up on Kazan p. 46

Paralympic Games Beijing

Extremity Games

HEADLINES — Colorful Wheelchairs; Aid For Medical Bills

Linda Boone Hunt Gale Kamen, PhD Valerie Karr Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes

H UMOR W RITERS Cambodia Takes Off p. 33

George Covington, JD Jeff Charlebois Gene Feldman, JD

W EB E DITOR Joy Cortes

G RAPHIC A RT / I LLUSTRATION Music Within

Scott Johnson Paul Kim Melissa Murphy - Medical Illustration Try a Trike p. 18

P HOTOGRAPHY

Chandler Chicco Agency Sony Pictures

T RANSCRIPTIONIST Sandy Adler ABILITY’s Crossword Puzzle

Chet Cooper testing the Kawasaki Teryx at Timber Ridge Ranch, Iowa

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg Cool Like Klebba p. 36

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

WWW.ABILITYMAGAZINE.COM ADVERTISING

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

DISTRIBUTION

Warner Publishing Services A Time-Warner Company Faxon - RoweCom Library Services Ebsco - Library Services Swets Blackwell

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

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 2008 Lainie Kazan Aug/Sept Printed in U.S.A.

Editorial@ABILITYmagazine.com

CORPORATE SHIPPING

NON-PROFITS Wheel Appeal p. 42

ABILITY Awareness Habitat for Humanity International

PUBLISHER

ABILITY 5

NEW SPIN ON WHEELCHAIR STYLE

ove into the fast lane in a wheelchair with arresting colors and improved strength. Made of an advanced composite material, they’re available in Cobalt Blue, Razor Red, Triton Yellow and Pearl White. The new collection, called the Spartech X-CORE SX, also has stronger ribs inside each spoke and aircraftgrade aluminum hubs for better performance. “The wheelchair is an important part of a user’s life, and we are providing them with the most vibrant and lively colors for greater overall visual impact and individuality,” said Spartech Sales Engineer, Jon Mason. Though wheelchairs have been available in colors for some time now, it’s usually added after-market through painting. Conversely, Spartech’s colors are molded in to deliver a brilliance that resists scratches, weather and general wear and tear. Nick Hambrick, co-owner of New Solutions, a wheelchair parts distributor in San Bernardino, CA, noted that “Spartech is taking a monumental step forward in helping the end customer personalize their wheelchair.” Spartech X-CORE SX’s three-spoke wheels have been re-engineered with four key performance enhancements. The brand’s patented manufacturing process allows engineers to optimize the product’s shock-absorbing qualities, which controls both vertical stiffness (ride comfort) and lateral stiffness (handling and cornering). Each spoke is strengthened with an internal rib inside the spoke. Aircraft-quality aluminum hubs sealed with advanced epoxy make for greater security. These stylish wheels are available worldwide from both Spartech and other distributors; the Pearl White option is available for a limited time from distributor New Solutions. spartech.com/wheels/wheelchair_summary.html

TO YOUR HEALTH

n the midst of a tightening economy and high prices for food and gas, the national non-profit HealthWell Foundation announced that it has awarded financial help to the largest number of underinsured patients in any one month since it was founded. In fact, the numbers for recent months have

ABILITY

been the highest in the foundation’s history. During Spring 2008, HealthWell awarded grants to more than 3,200 patients in one month, 3,300 the next month, and 3,377 the month following that one. The organization was on track to aid more than 30,000 patients in 2008 with money needed to pay for crucial treatments. “There are far too many underinsured Americans who struggle to meet their out-of-pocket treatment expenses,” said Lisa Wack, HealthWell’s executive director. “But we are pleased that we are here to assist as many in need as we can. We have provided assistance to tens of thousands of people, and we are grateful to the generous donors who have made it possible.” Based in Gaithersburg, MD, HealthWell Foundation is an independent charitable organization that provides financial support to patients who have some medical coverage, but still have difficulty making medical ends meet. Since it was established, HealthWell has given grants to more than 50,000 underinsured individuals who face a variety of life-threatening and life-altering illnesses. Recently, soaring food and fuel costs have added to working families’ already weighty financial loads. According to a 2007 WageWorks study, even working Americans with health insurance defer medical visits and cut back on prescriptions to manage rising costs. Nearly one-quarter of survey respondents who had employee-sponsored health insurance, said that they had cut back on prescription medicine in the previous year because of cost. High out-of-pocket expenses are especially problematic for underinsured Americans who have a serious or chronic disease. Many of them rely on prescription drugs to control their conditions, but are forced to choose whether to pay for crucial treatment or other necessities such as rent, groceries or utility bills. HealthWell assists these patients who are squeezed in the middle: Not poor enough to qualify for most assistance programs, but not wealthy enough to cover the expenses themselves. HealthWell is an independent 501(c)(3) non-profit association that provides financial assistance to cover prescription drug coinsurance costs, co-payments and deductibles, health insurance premiums and other select out-of-pocket healthcare costs. The foundation factors in individual financial, medical and insurance situations when determining eligibility. healthwellfoundation.org

FREE FLOWING SCHOOL

school and the legendary architect who designed it will share a prestigious accessible architecture and design award. The Indian Community School of Milwaukee and Antoine Predock, FAIA, are the 2008 recipients of the Barrier-Free America Award, presented by the Paralyzed Veterans of America (PVA). “All-access is good for all people, and the Indian Community School of Milwaukee is an inspiring example of this principle in practice,” said Randy L. Pleva, Sr., who is national president of the PVA. “Through their hard work, architects and their clients can play an extremely important role in removing the barriers that people with disabilities face everywhere, every day—an advance that improves everyone’s quality of life.” The award acknowledges and promotes leadership, innovation and action in the architectural and design communities. This year’s winning design is noteworthy for the following reasons: • Access was a core value in the design of the school from the beginning. • Accessible features are seamlessly integrated into the school design. For example, the building follows the rolling landscape. Where floor level changes occur, special connecting nodes with ramps, illuminated by daylight, are used as gathering areas, places for storytelling, and small teaching spaces. • Accessible movement is paramount throughout the school, both vertically and horizontally, with stairs and elevator circulation routes that are inclusive and balanced, and wider corridors and main areas that amply accommodate groups of people with disabilities. World-renowned architect Antoine Predock, FAIA, is known for projects that range from the famed Turtle Creek House, built in 1993 for bird enthusiasts along a prehistoric trail in Texas, and the Tang Teaching Museum and Art Gallery at Skidmore College in Saratoga Springs, NY, to a new ballpark for the San Diego Padres that gives one a feeling more of a garden than a sports complex. The Indian Community School of Milwaukee (ICS), privately owned and operated, is an urban, inter-tribal school educating American Indian children from kindergarten through 8th grade. Serving the Indian community of metro Milwaukee for more than 30 years, ICS has provided a unique learning experience. American Indian spirituality, languages, ceremonies, cultural identity and pride are major components of the children’s education. The school serves 309 children from 12 different tribes. Previous recipients of the award include: Cesar Pelli for his accessible design of Washington, DC’s Ronald Reagan National Airport; Bob Vila for educating the public about the importance of accessible design solutions through his television show; and Marca Bristo, president

and CEO of Access Living for the organization’s Chicago-based headquarters. Everyone can play a role in creating a barrier-free America. “Encourage the architects and designers in your community to imagine how a person with disabilities will experience the buildings and spaces they have in mind.” Mr. Pleva urged. “This heightened sense of awareness and empathy will not only improve the quality of buildings and spaces for people with disabilities, but for everyone.” pva.org ics-milw.org

CHANGING THE CHANNEL

ost consumers are just now becoming aware of the mandated transition from analog to digital broadcasting scheduled for February of 2009, and how it will affect the TV viewing that they rely on daily. Blind or deaf consumers who purchase digital TV sets, and subscribe to cable, satellite or fiber-optic TV services have expressed frustration with set-up, reception and compatibility problems regarding access services (captioning and video description), few of which are understood or even documented by manufacturers and retailers. In addition, people who want to continue receiving free over-the-air broadcasts using their analog sets and an antenna,must purchase a set-top converter box to do so, while figuring out how to make captions and descriptions work for them. The WGBH-Carl and Ruth Shapiro Family National Center for Accessible Media (NCAM) previously published an overview of problems confronting deaf or hard-of-hearing people trying to access captions via digitical television (DTV) or through a converter box. More information on the transition can be found on NCAM’s website listed below. NCAM is part of the Media Access Group at WGBH, which also includes The Caption Center, established in 1972, and Descriptive Video Service, founded in 1990. This new paper focuses on challenges facing blind or low vision viewers who require video description to enjoy and fully comprehend TV programming. Topics covered include: • • • • •

Set-top Converter Boxes Accessible Menus Tips for Finding Video Description in DTV Troubleshooting Technicals Note about Program and System Information Protocol

This paper, along with much more information about the DTV conversion from a variety of resources, can be found at NCAM’s DTV Access site; ncam.wgbh.org/dtv access.wgbh.org

ABILITY 7

AMPUTEE PEER VISITATION

he Amputee Coalition of America (ACA) has received a U.S. Department of Veterans Affairs contract to establish amputee peer visitation programs at all 21 VA Veterans Integrated Service Networks. The coalition will conduct “train the trainer” seminars and integrate its peer visitation model at VA hospitals across the country.

he Center for Urban Community Services (CUCS), whose housing and service programs help more than 20,000 of New York City’s homeless, disabled and low income households annually, is making a difference in the fight to end homelessness by bringing professional psychiatric care to the streets.

The Amputee Coalition’s military peer visitor program, initiallyestablished at Walter Reed Army Medical Center in Washington, DC, and Brooke Army Hospital in San Antonio, TX, was also introduced last year at the U.S. Naval Medical Center in San Diego.

Arugably the only program in the nation dedicated to bringing these professionals where they are needed most, CUCS’s Project for Psychiatric Outreach to the Homeless (PPOH), helps 40 percent to 50 percent of adults in the city’s shelters and up to 75 percent of New Yorkers on the streets who are living with chronic mental illness. PPOH psychiatrists understand that the traditional office-based model is ineffective with this group, and instead go to where they have the greatest access to homeless people: streets, drop-in centers and shelters. The objectives of the program include stabilizing clients’ psychiatric conditions so they can move into housing, and providing a foundation for clients to achieve long-term goals.

In another program funded by the Department of Veterans Affairs, the Amputee Coalition of America is creating materials for both the veterans of the first and second Iraq wars who have Polytrauma/Blast Related Injuries, and those who care for them. The coalition has also received private funding to evaluate the effectiveness of the caregiver peer visitor program. “The Amputee Coalition’s peer visitation program is rated as an effective intervention for military and civilian individuals with limb loss. In a satisfaction survey at Walter Reed Army Medical Center, the amputee peer visitor program was rated second overall, out of 32 post amputation interventions, by veterans of both Iraq wars,” said Paddy Rossbach, CEO of the Amputee Coalition of America. A survey of civilians following a peer visit found that: •100 percent reported that peer visitation was helpful with their adjustment to limb loss • 88 percent rated the overall quality of peer visits as excellent • 85 percent learned where to find additional information about limb loss • 73 percent felt better informed as a result of the peer visit In addition to limb loss,“the Amputee Coalition’s peer visitor program is designed to assist individuals and their families coping with a variety of injuries and disease, including spinal cord injury, traumatic brain injury, burns, and sensory impairments,” said Rossbach. amputee-coalition.org

TAKING IT TO THE STREETS

ABILITY

To achieve its mission, PPOH also helps more than 50 local organizations that serve homeless adults who would otherwise not be able to afford psychiatric care for clients. PPOH offers consultation and technical assistance to staff at program sites, trains future community psychiatrists and advances the emerging field of community psychiatry. “We are very proud of PPOH’s accomplishments working with homeless adults and homeless service organizations throughout the city toward the common goal of ending homelessness,” remarked Tony Hannigan, executive director of the CUCS. Since its start, 95 percent of formerly homeless PPOH clients who live in permanent housing remain stably housed. In addition, 30 percent of their homeless clients in transitional housing at the start of each year, are placed in permanent housing by year’s end, and 25 percent of their non-sheltered clients move into permanent housing. cucs.org

ABILITY

ABILITY 9

ACCESS: We have jump-started the process of change by requiring that all overseas construction or reconstruction projects funded by the U.S. be accessible to people with disabilities. Several years ago, I was disturbed to learn that U.S.-funded reconstruction in Bosnia was not being done in an accessible manner. Think about it: in a war-torn country with a growing number of people with disabilities, we were rebuilding structures without a thought about making them accessible. That’s outrageous. We know that the cost of making a building accessible is negligible, if you plan it up front. However, the costs of retrofitting are expensive and, in many developing countries, prohibitive. So we need to get it right the first time. At my request, the USAID adopted access standards that govern all overseas projects. The agency solicited a wide range of input, including those of people with disabilities. In the process, they came up with excellent accessibility standards.

LET’S BEND TOWARDS JUSTICE Dear ABILITY Readers, I often tell people that the day the Americans with Disabilities Act passed in Congress, was the proudest day of my legislative career. This was landmark Civil Rights legislation, a long-delayed Emancipation Proclamation for millions with disabilities. It said “no” to the exclusion and discrimination that had held back people with disabilities in the United States for centuries. It said “yes” to a future of inclusion and opportunity for all Americans. The ADA has been a great success in many ways, helping to integrate people with disabilities into the mainstream of society. However, we still have much work to do, both in ensuring physical access for people with disabilities, and in changing attitudes and expectations towards people who have disabilities. Unfortunately, the barriers that we have begun to eliminate here in America—obstacles of isolation, exclusion and low expectations—remain pervasive and entrenched elsewhere in the world. I believe strongly that the United States should take the lead in changing this status quo. To that end, I have been working in recent years with the United States Agency for International Development (USAID) and the State Department to make fundamental changes in the way U.S. foreign aid programs work. Our endeavors are focused on three, key areas: access, inclusion and awareness. 10

ABILITY

INCLUSION: We need a robust effort to ensure that people with disabilities are included in projects that promote economic development and democracy. This is not a matter of charity or assuaging our consciences. It’s smart economic policy, and it’s been abundantly proven that people with disabilities can be exceptionally capable and reliable workers. Moreover, it is critical that people with disabilities have the opportunity to advocate for their own inclusion and participation in the social and political institutions within their own countries. To this end, for the last four years, I have secured funding to support local USAID missions working directly with, and providing financial support to, disabled persons organizations (DPOs) in developing countries. For example, in Ecuador, we support a program to teach computer skills to people with disabilities. In Ghana, we support a program that trains people with disabilities to be election observers. We also enhance the participation of people with visual disabilities in local elections, by providing training on a tactile ballot system. In Uganda, we back a sign-language training program, with the goal of increasing inclusion of people who are deaf. But it is not enough to fund these programs; our leaders in the disability advocacy community must also share their knowledge and experience. So I have also secured funding for U.S.-based disability organizations to provide training and technical assistance to DPOs in developing countries. RAISING AWARENESS: In many parts of the world, disability rights are not only nonexistent, they are not even on people’s radar screens. Where this is the case, the first step is awareness. Programs such as those mentioned above are a start.

The ABILITY House program, working with, ABILITY Magazine and home building organizations reaches out 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 In addition, the Convention on the Rights of Individuals with Disabilities can make a historic difference. I am deeply disappointed that our own government decided not to sign on to the Convention. Indeed, this failure of leadership is not just disappointing, it is shameful. To date, we’ve taken only baby steps toward ensuring the rights of people with disabilities around the globe. Looking ahead, I am not naïve about the barriers and opposition that stand in the way of a true global disability rights movement. However, based on my own experience with ADA, I am optimistic about our longterm prospects.

As Dr. Martin Luther King, Jr., said, “The arc of the moral universe is long, but it bends toward justice.” Let the 21st century bend towards global disability rights. Sincerely,

Senator Tom Harkin www.harkin.senate.gov

ABILITY 11

OUTDOOR ILLUMINATIONS Everyone loves a beautifully lighted garden, especially during the summer months, but do you really need the lights on all night? How much is that costing you? How does “nada” sound? Enter solar garden lights. These handy lights charge all day and will keep your garden or walkway glowing beautifully all night. Once again, of course, there’s an initial investment, as prices for four lights start at about $40, but you can easily recoup the costs in the amount of energy you save.

GIVE YOUR WATER HEATER A BLANKIE This, I think, is one of those ideas that is so basic, I actually kicked myself for not already having done it. If you have an older water heater—and most of us do—simply installing an insulating blanket around it can dramatically reduce the stand-by heat loss that occurs during the colder months. This will lower your energy costs and save about a 1,000 pounds of carbon dioxide per year, to boot. In addition, you’ll get more hot water out of the tank, and who doesn’t dig that idea? It only takes about a half-hour (or, if you’re like me and handymanimpaired, an hour) and a kit costs around $25 per heater. Learn from my mistake and be sure to get a helper on this one. A couple of tips: • If your water heater is electric, make sure you shut off the power. • Clean off the top of the heater so that the tape will stick. • When measuring, remember to mark the position of the thermostat at the bottom of the u tank, make sure there’s plenty of clearance around the thermostat and burner access. Last, most water heaters are factory-set at 140 degrees, which may be more than you need. If you find that your hot-water supply is adequate, try lowering the thermostat to 120 degrees. You can save up to 550 pounds of carbon monoxide, per year. But if that temperature leaves you shivering, experiment in the 120 to 140 range to find what works for you, as every degree you reduce will save energy costs and reduce pollution.

BOOK WORM I confess. I spend way too much time (not to mention money) on books that are read once and then collect dust afterward. Don’t get me wrong, I love the library (remember those?). Problem is that it can be tough to get new publications. Ta-Da! Along comes paperbackswap.com to solve both those problems! This is just an awesome idea! Paperbackswap.com is an online, free way to swap books with club members. Basically, you just need to register and list nine books you’re ready to blow the dust off of and get out of your house. This gets you three credits, and then you can start trading away. All it costs is the postage to send a requested book to another member. Every time you do that, you get another credit. Easy, cheesy!

WHAT’S IN YOUR PRINTER? Nowadays, recycled printer paper is available in a wide range of colors, weights and styles, including the brightest whites, which can meet the requirements of businesses and professionals. However, keep in mind that the bleaching of paper, whether virgin or recycled, is a leading cause of toxic water pollution in the United States. Chlorine, used in the bleaching process, is a byproduct of an extremely toxic family of chemicals known as 12

ABILITY

dioxins, which are linked to several human health conditions. You can further reduce your environmental impact by purchasing chlorine-free recycled paper. The optimal post consumer content (PCC) content is 30 percent, but really even 10 percent is better then none! Making this step even easier is the fact that most chain office stores offer plenty of recycled options. According to the California Department of Conservation, one ton of 100 percent recycled paper saves: 17 trees 7,000 gallons of water 4,100 kwh of energy (enough to power the average home for six months) 60 pounds of air pollution 2.5 cubic yards of landfill space

WELL-HEELED Actress Natalie Portman is not only stepping out and into her own line of “vegetarian” shoes, but she’s also inviting you to take the journey with her. The proceeds of her new line with Té Casan (as in Take Us On) will benefit various non-profit organizations dedicated to environmental preservation and animal rights. The Israeli born Portman, a Harvard graduate and star of such films The Other Boleyn Girl and The Darjeeling Limited, has been a vegetarian since age 8. She noticed the lack of what some call animal-friendly footwear in the luxury designer marketplace. Té Casan, a two-year-old women’s specialty footwear brand, collaborated with Portman for her 100-percent vegan collection. “As a vegan, it’s been challenging finding designer shoes made of alternative materials,” Portman has said. “It’s the perfect opportunity to design high-end footwear free of animal products.” The limited edition collection is hand-crafted. Portman not only lent her name to the collection, but also worked closely with Té Casan’s think tank throughout the entire development process to maintain consistent quality within a design aesthetic. Personally, Portman has been wearing alternatives to leather shoes for some time, including Beyond Skin, a footwear label that produces classical vegan shoes handmade in England. Going designer green from the ankle down will cost you: Count on $200 and up. by Kristen McCarthy Thomas tecasan.com beyondskin.co.uk/html/home.php ewg.org Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern California. She leads her company’s Environmental and Sustainability Task Forces, helps its 70-plus associates “green up” and writes a related blog at just2hands.blogspot.com ABILITY 13

ave you ever thought of picking up a hobby? I have a friend whose hobby is thinking of hobbies that he would like to start. It’s been 20 years and he’s yet to take up a hobby, so I guess he really enjoys his hobby. You see, hobbies take time and effort and he’s, well, lazy. Sound familiar? I’m not picking on you, I’m picking on all of us. For some crazy reason, we like when things are done instead of the “doing” part. Not only has human nature rendered us sinful, but slothful. (Sure we blame Eve, but Adam was the one who said, “Honey, can you grab me an apple?”) Hobbies are one way of breaking our lazy bone. I don’t feel like writing this, which is too bad since it’s the hobby I chose. It’s hard to pick a hobby. After all, this is something you might be doing the rest of your life, so you definitely want to make the right decision. It’s like searching for the right person to marry. You don’t want to put all your time, effort and money into something only to end up in divorce court. Speaking of marriage, this needs to be considered in choosing your hobby. For instance, if you like collecting World War II memorabilia, is your wife really going to want that stuff decorating the house? A German Luger salt shaker? A V-1 rocket statuette? A colorful Nazi flag used as a quilt to drape over that sofa adorned with swastika throw pillows? I don’t see it happening… Some people have strange hobbies, like putting little ships in bottles. I still don’t know how that’s done. I think I’d go crazy and end up with a new hobby of smashing tiny ships and breaking bottles. How do they get those things in there? Could it be magic? Now that’s a good hobby. Magic. What a great way to impress your friends. For once in your rotten life you could be the cool guy that everybody wants at parties. Girls would finally talk to you, possibly even pretty ones.

ABILITY

“How did you do that?” the babe would ask. “I’ll tell you if you go out with me,” you’d reply with a wink. “Never mind, it’s not that important,” she’d say over her shoulder, walking away. On the other hand, stamp collecting is very exciting for those people who like to take a walk on the mild side. And truly, who can ever have enough stamps? There are so many to choose from. Every country has different ones. Some of them even have a post office philatelist, as the serious stampers call themselves. With the price of stamps creeping up, it’s not a cheap hobby. If it becomes too expensive for you, maybe you could try food-stamp collecting. You really can’t go wrong with this one, especially if you like licking things. My first kiss was a 23cent air express postal stamp. As a matter of fact, we went to the prom together. My brother used to collect rocks when he was a kid. It was really affordable for him, since he found many of them inside his head. I wonder whatever happened to those rocks. Intuition tells me my mom was involved in their disappearance. Music is a hobby a lot of people are into. Rock jocks can tell you the lead guitarist of every band that ever opened for Led Zeppelin, and which member bit the head off a bat. Heavy metal diehards wear black shirts with something like 1980 Stones Tour - Tattoo You and a big Mick Jagger tongue on it. Come to think of it, Mick would make a good stamp collector. The great thing about music is there’s a genre for everyone. Classical buffs can identify a symphony’s movements, and let you know if it’s in a major or minor key. Jazz folks always want you to hear some endless sax solo. You can’t beat Jazz names. Thelonius Monk, Miles Davis, Charlie Bird Parker. Tell me they don’t sound

jazzy. And the blues crowds understand that someone’s baby is going to be leaving them, and it’s going to bring about quite a bit of sadness. Depression as a hobby. Now there’s a good one. As a child, I knew people who collected comic books. They were usually the ones who could never come out and play. They stayed up in their “bat cave,” reading and perhaps dreaming of taking down Mr. Freeze with their secret gamma-ray burp. They knew everything about superheroes. Naïve me would be like, “Does the guy carry around a green lantern and hit people with it?” Some of those editions could fetch up to 600 bucks today. Stupid me, I was into Mad Magazine. (I wonder what a vintage ABILITY Magazine goes for?) I don’t know if there’s a correlation, but these comic book collectors turned out to be computer whizzes, making more money by the age of 30 than I’ll see in my lifetime. Maybe I shouldn’t have gone out to play. Sports is another good hobby. Baseball enthusiasts know statistics from Pee Wee Reese to Harmon Killebrew, who incidentally had a lifetime average of .256 with 573 homeruns. They are fanatics about stats. I’m lucky if I can remember my four digit ATM pin. A lot of men love sports. A lot of women hate men loving sports. They think why can’t he love me? (Incidentally, it is not a good way to express your love by tackling your girl.) But sports are a financially tough hobby to swallow. In order to go to a professional game you’ll probably need to liquidate your annuity, or sell your baseball cards. However, it is a good hobby that offers a great excuse to watch TV all day. WIFE: “Are you going to watch football games all day?” HUSBAND: “You told me to take up a hobby.” Keeping with the sports theme, gambling has also become a hobby for some. These are the people who have decided they no longer want their car, house or wife, so they take up gambling. It’s a fun hobby when you’re winning, unfortunately the fun doesn’t last. I don’t go to Vegas, because I know the only thing that stays in Vegas is my money. I knew a big time gambler who bet me he would never gamble again. I took the bet, which meant he lost. Horses, football, poker, running naked at a soccer game, nothing is off-limits with this hobby. Sticking with the vice theme, drugs are not a good hobby. They’re trouble from the get-go. They do get you up off the couch and motivate you to go see your dealer. They also get you thinking about all the hobbies you’re going to do in your life. When you’re high, there is so much you are going to achieve; then you come down and all those things become too difficult to accomplish. So you’ve no choice but to get high again, so you can get motivated to tackle all those hobbies again.

A lot of women take up the expensive hobby of shopping. They collect things like blouses, bathing suits, dresses and shoes. Especially shoes. Then, when their girlfriends come over, they take them to the closet to show off their collection of pumps and high heels. Women have a great knowledge of this hobby. They can tell you who made what purse. How much it cost. And where you can find the items on sale. Most people are proud of their hobby, but this is one some women hide—at least from men. Oh, here’s a good one. Learn a foreign language. Is there any greater way to impress people than by ordering a meal in French? Donnez-moi trois Big Macs et le super-sized Coca Cola, s’il vous plait.” And isn’t that what life is about? Duping people into thinking you’re smart. Living in America, it’s probably best to learn Spanish, since that’s what many people speak nowadays. But you also might want to pick up Chinese, so you can read the instructions that came with your new wall cabinet. Or you may want to learn one of the Indian languages, for when they move your job offshore. I tried coin collecting as a kid. But every time I saw something cool in the back of some magazine, I’d spend the coins I’d collected to get the item, which always turned out to be a major disappointment. Sea Monkeys, my ass. I’d waste rare change, probably worth 40 to 50 bucks in the coin-collecting world to buy a $1.99 item. Whatever piece of junk I was stupid enough to purchase, the postage and handling were always triple the price of the trinket itself. You can always learn how to play an instrument. Some people in life are good at blowing; others have a knack for sucking. As a matter of fact, I used to play a shoe horn, until I got athlete’s mouth and had to quit before I developed corns on my lip. All musical instruments are great. Think of the frustration you can release by beating on a set of drums. You might not become bloody rich but you could be the next Buddy Rich. There are so many hobbies to choose from. A lot of guys like to spend time alone with a hoe. You can buy a camera and go around snapping pictures. (I once dated a photographer, but nothing really developed.) You can dive into sewing, writing, mysophilia, dancing, categorizing moths or beer can collecting. Yeah, beer can collecting. Believe me, it’s a lot of fun emptying out that hops brewed malt into your fat belly and slurring to your friends, “This baby’s from a remote part of China.” Do hobbies have a purpose? You bet they do. They get you doing something in your stinking life. Plus, and I know how much this could hurt, you get to learn something, which is more than you’d get from watching an episode of How I Met Your Mother. (If, by chance, you’re one of the handful of people who watch the show.) Incidentally, being a couch potato is not a hobby. “Ham on a Roll”

by Jeff Charlebois ABILITY 15

ou were probably wondering where headaches would pop up in this pain series. Well, now seems as good a time as any. Few people go their entire lives without a headache, some experience them quite often, and still others suffer the debilitating variety. If I go too long without eating, my blood sugar drops and I can count on a headache. Same if I decide to stop drinking caffeinated coffee for a few days. When I get a run-of-the-mill headache, I take two extra strength Tylenol and I feel better so soon that Iâ&#x20AC;&#x2122;m convinced that it must be the placebo effect, given that the medicine scarcely has had time to reach my bloodstream.

ABILITY

As is the case with everything in the world of medicine, headaches can be generally categorized. The chronic recurring ones include migraines and tension headaches, which most of us have from time to time. There is also headache due to abnormality or disease, typically of the brain. Though the brain does not “feel” pain, the sensation comes mostly from the dura mater—or tough mother—which is the thick covering around the brain and beneath the skull. Disease or injury to other parts of the head such as the eye, the nose, the ear or the throat can cause headaches, too. The word “migraine” is frequently used incorrectly by doctors and patients alike. The term refers to a specific type of headache, which is almost always severe; however “migraine” should not be used to refer to just any severe headache. The genuine article involves disturbances to the blood vessels around the brain. There are several types of migraines, and they are typically associated with nausea, vomiting and visual disturbances, such as seeing wavy lines or spots. Many migraine sufferers notice the visual disturbances or neurologic symptoms before a headache starts. This is called an aura. Sometimes there is numbness or tingling in one arm or hand, or on one side of the mouth. Seldom is there weakness, as is the case with a stroke; but it is believed that people with certain types of migraines are at greater risk for strokes. If there are no neurologic symptoms or auras, the headaches are called common migraines. If the neurologic symptoms go away in less than 24 hours, the headaches are considered to be classic migraines. If the headaches are less prominent than the neurologic symptoms, they’re called complicated migraines. If there is nausea, vomiting, auras or neurologic symptoms but no headache, it’s called a migraine equivalent. These typically occur in children who eventually develop the headaches later in life. One rare type of migraine is the cluster headache. These usually occur in older men. The pain is excruciating and typically on one side of the head, behind one of the eyes. Associated symptoms include redness of the face, a stuffy, runny nose, and tearing from the eye on the affected side. In keeping with the name, cluster headaches often occur daily and at about the same time for four to 12 weeks. The headaches then typically go away for a year or more before the cycle begins again. Most peoples’ headaches respond to over-the-counter or home remedies, rest, and the passage of time. Others require medication from a doctor. Anti-inflammatory agents or narcotics are prescribed for severe pain, while migraines require a special category of drugs that affect the blood vessels around the brain. These often include a category of medications similar to caffeine or caffeine itself, so it should come as no surprise then that your head hurts when you skip coffee for a few days, or that some people get relief from a headache after drinking a few cups. Headaches are sometime hard to diagnose and treat. In the overwhelming majority of cases, there is no identifiable underlying disease. On the other hand, they can be a warning sign of more serious problems. Since most of us are familiar with our usual headaches, how to avoid them or how to make them go away, all of us should be concerned if we experience a new type of headache, particularly if it’s more severe or won’t go away. Such headaches warrant prompt medical attention. If they are truly severe and sudden, like a thunderclap, then go straight to the emergency room. Headaches that are difficult to control and are not due to an identifiable problem may require the expertise of either a pain management specialist or a neurologist who specializes in headaches. Until next time, be well. by Thomas Chappell, MD ABILITY 17

ABILITY

s is the case with many motorcycle owners, Larry Curry only rides when it’s pretty outside. But unlike most riders, he has his wheelchair with him when he goes out for a spin.

also found that with most accessible bikes, the rider required assistance to get on or off. “One of our biggest concerns during the design process was to make sure the rider could have independence,” Warne says. “That’s why we wanted the lift and lid to be remote controlled.”

Just a year ago, Curry would never have thought he’d be able to ride a motorcycle, let alone one with a V8 engine. Born without legs, he had driven cars before, but earlier this year his friend Monte Warne, owner of Boss Hoss Cycles, gave him the opportunity to ride a wheelchair-accessible trike.

Despite the altered design, the Advantage Trike still provides the power and smoothness of a regular Boss Hoss Trike. “Just like any other bike or trike, the Advantage Trike can be made between 300 horsepower and 440 horsepower,” Warne says.

“Larry often said that he’d never had a chance to ride a motorcycle,” Warne recalls. “I said, ‘You know, we can do some customization and you can ride a trike.’” Warne had enjoyed the freedom of riding a V8 bike for much of his life, and did some research to see what he could do to accommodate his friend. Teaming up with V8 Performance, Inc., creators of Hossfly V8 bar stool racers and located just down the road from the Boss Hoss factory in Dyersburg, TN, Boss Hoss Cycles created the Advantage Trike, the first production-made wheelchair accessible trike. The design was based on the existing Boss Hoss Trike model. “We used the body that we already had and just cut off the back,” explains Warne. They started the project in Fall 2007, and within a couple months the trike was ready for Curry to ride. The Advantage Trike will be commercially available in Fall 2008. The back of the Advantage Trike has a wheelchair lift built into the chassis, which is hidden by the fiberglass, truck-style trike body. The door to the lift is remote-control operated. The rider can move himself onto the lift, which will raise the wheelchair until the seat is level with the seat of the bike. There are two big grab handles that the rider can use to pull him or herself onto the seat. The lift can then lower the wheelchair, where a lid will cover the lift and the chair, securing it and putting it out of sight during the ride. All the controls of the trike are hand operable to accommodate individuals who either do not have legs, or do not have use of them. Warne had looked at other wheelchair accessible bike models, and noticed that in most cases the wheelchair had to be folded and stowed on the side of the vehicle. His aim was to make it inconspicuous. Warne

In fact, Palmer says, the Advantage Trike might even have features that are better than a regular trike. “We’ve added a little weight, so it’s probably a smoother ride.” To make the bike just right for Curry, a special harness was created. “Riders without legs have no counterbalance, so we needed to design a system that would hold the rider safely on the seat,” Warne explains. “Every individual may have different needs and require further customization, which we will accommodate.” The hard work put into this design paid off when Warne and Palmer saw Curry’s reaction to his new motorcycle. “He was just tickled,” Palmer says. Not only was he impressed, he was also eager to ride. Curry got the bike on a Monday, and got his license on Tuesday. “The first time I rode I wasn’t scared, but I was nervous,” Curry says. “I got it up to 80 mph real quick to get a feel for it.” Curry quickly got used to his new wheels. “About a week after it was built, we brought the trike to Daytona Bike Week where Larry put 500 miles on it,” Palmer says. “The trike gives me freedom I never thought I could have,” Curry says. Even a dinner at Cracker Barrel near his Dyersburg, TN, home is not the same. Curry took his trike to a local restaurant, parked it and marveled at all the people who took pictures and asked questions. “This trike has definitely caused a stir wherever I take it,” he says. “Most of the people who’ve seen it are amazed by how user-friendly it is, how it’s going to open so many doors for disabled people,” he says. Curry hopes people who were born disabled, veterans and soldiers disabled in Iraq, along with riders who have been disabled in accidents, will have the opportunity to experience the freedom he feels when he rides. “I wanted the bike for all those people,” he says. boss-hoss.com

ABILITY 19

OFF ROAD ACCESS

ecently, ABILITY’s Chet Cooper flew to Iowa to ride through some of its hillier terrain with Dan Kleen on Kawasaki’s new Teryx 750 Side X Side. Kleen is the executive director of the Iowa OffHighway Vehicle Association and the president of the National Off-highway Vehicle Conservation Council.

Kleen: Yeah. Right now we have NOHVCC partners in 43 states. We try to find someone in each state who knows what’s happening in that region and make them our go-to person. NOHVCC holds an annual conference in a new location each year. This year it was in Albuquerque, NM, and we had approximately 230 attendees.

Chet Cooper: Dan what do you do as a leader for these two organizations?

Cooper: How long have you been with NOHVCC?

Dan Kleen: As president of the National Off-highway Vehicle Conservation Council (NOHVCC), I work with riders, clubs, state associations, manufacturers and others to promote and educate people to ride their All Terrain Vehicles (ATVs) and off-road motorcycles responsibly.

Kleen: I started as an Iowa NOHVCC Partner in 1995, and I’m into my fourth (two-year) term as president; I served on the board of directors for three years before being elected president. I actually helped form our state association in 1988. Our membership is about half ATVs and half Off-Road Motorcycles. The registration is $15 a year for either.

Cooper: State associations plural? Cooper: How did you get the land on which you ride? 20

ABILITY

Kleen: In 1990, when we opened our first park, Iowa was still not allowing us to ride on state-owned property. So the first park that we opened was the Bluff Creek OHV Park. Title is held by Iowa Partners of NOHVCC (a non-profit corporation). We would like to turn it over to state ownership, and probably will be soon. The state now allows us to ride on their property, if it’s a designated Iowa OHV Park. We encourage the state to take ownership of our OHV Parks, when possible. It helps us out with liability and, down the road, we know that the park will be there forever. So it’s a good deal for us all.

Cooper: When you fly over and see all this land, you would think it would be easy to find new areas for OHV Parks. Kleen: You would think so, but Iowa is ranked 49th in the nation for amount of public land. About 98 percent of Iowa land is privately owned. So it is very hard to find an area of any size to open an OHV Park. The Timber Ridge area that we’ll be riding in today is a private, family-owned operation. Cooper: Really?

In Iowa, we’ve got eight OHV Parks. Bluff Creek we own. Four are on city property. Two are on Army Corps of Engineers’ property. And our newest project, the Gypsum City OHV Park located in Fort Dodge, is owned by Webster County Improvement Corporation, which is a non-profit corporation. The key to the success of the Gypsum City OHV Park is the many partnerships supporting the project. We have had land donations from four gypsum companies. Some of this land was mined over 80 years ago, and has reforested itself. The trees and ponds are like nothing else in this part of the state. And some of the property has been reclaimed. This park will offer trails and riding opportunities that attract riders from all over the country. The local community has really gotten behind this project from day one. Cooper: “Reclaimed” is an issue of liability? Taxes? Kleen: These companies are obligated to reclaim any land they have altered through their mining operations. Some of the older areas may have been grandfathered in and do not need to be touched again. These areas are the ones that make the best riding. And what makes this OHV Park project unique is that we were able to introduce and pass two pieces of legislation. One allowed transfer of ownership of this land without reclamation, and the second exempted the companies from any liability down the road if someone were to be injured on the property that they had mined. Both pieces of legislation were introduced and spearheaded by local legislators: state representative Helen Miller and state senator Daryl Beall. Without their leadership and support, this OHV Park would not have happened. This is a perfect example of how getting to know and educate your legislators on your issues and goals can make a difference. We went to them and asked for their support and, after showing them what an OHV Park could do to benefit their community, they were willing to help. Cooper: Do riders need to be a member of a club or association to ride in OHV Parks? Kleen: No, they just need have to have a current Iowa OHV registration.

Kleen: Yes, it is one of only a few private riding areas in Iowa, and it is also the oldest and the largest. They have around 3000 acres. This area is very diversified with rows of crops, hay fields, apple orchards, vineyards, a winery, hunting, fishing, sporting clays and, of course, some of the best trail riding in the Midwest. They have around 200 members who are allowed to ride these trails and enjoy the great outdoors. Some of the members have cabins or campers and have been out here for many years. Cooper: How about wildlife? Kleen: Lots of it! You’ll see a little bit of everything out there. Deer and turkey are plentiful. Cooper: Will we have to keep an eye out for oncoming traffic when we go out? Kleen: Yes, all the trails are two-way. We saw a few bikes yesterday. During the week like this though, it’s not so busy. On weekends we see a lot more riders. Cooper: How long have you been riding? Kleen: All my life. I grew up on a farm, and we started off on mini bikes and go-carts then worked our way up to motorcycles and ATVs. Cooper: How were you injured? And did your injury change what you ride? Kleen: I was hurt in a diving accident 21 years ago. At the time I rode motorcycles, both off-road and street bikes. ATVs were just starting to get popular. After my injury I could not ride two-wheeled motorcycles so I bought a Honda Odyssey, which has hand controls on the steering wheel and is very easy to use. At that time, very few ATVs could be ridden without needing a lot of modifications. Nowadays most ATVs have fully automatic transmissions and engine braking, and need few modifications for people with limited mobility to ride. Even the side-by-sides, like the new Kawasaki Teryx that we’ll be riding today, are great machines for people of all abilities who want to get out and enjoy the great outdoors. If needed, they can be adapted with hand controls, like the one I’ll be riding. These are the same ABILITY 21

hand controls used in cars and vans for people who need them. Cooper: You ride street bikes also? Kleen: Yes, one of my favorite things to do is to hit the road on my street bikes. For awhile, I thought my road riding days were also over. But I started checking into sidecars and found out they would work great for me. I can load my wheelchair into the sidecar and ride the motorcycle with the help of an electric shifter that I operate with my thumb. These bikes also have reverse, so I can back out of a garage or parking spots. Many elderly and people with limited abilities are starting to ride trikes—three-wheeled motorcycles. Cooper: They come with a reverse feature? Kleen: Some come with an electric reverse and on some you can have it installed. Another item that can really help those of us with limited upper body strength is a product called EZSteer; it’s like adding power steering to your motorcycle, but can only be used if you have a sidecar or trike.

Chet Cooper rides Kawasaki’s Teryx 750 Side X Side in Iowa’s Timber Ridge Park.

ABILITY

Cooper: How do you get on and off your motorcycle? Kleen: I wheel up to it, lift my right leg over the seat and then just transfer onto the seat. After I’m on the bike I take the wheels off my wheelchair and set them in the sidecar. It is always fun to watch the looks others give me when they realize it is a wheelchair in the sidecar, or when they see me get on or off the bike. Cooper: Do sidecars feel strange? I would think if you’re used to a motorcycle’s balance, having that third wheel would feel different. Kleen: It definitely handles and corners differently. You’ve got to take your time and get used to the handling. Right-hand turns on a sidecar can be challenging if you do not know what you’re doing. Some riders carry sandbags in their sidecars to help balance the rig while

cornering. But it is like anything else: You need to practice a bit, and know what your machine can do.

and they have their bathroom fixtures and appliances installed at a certain level.

Cooper: How do you haul your motorcycle and ATVs?

Kleen: I’ve had several motor homes, and I really like them. I can see someday getting another one. I think I could be one of those people who sells their home and just travels. Our winters in Iowa are just killers. I’d love to go South and ride all winter. However, I don’t know how feasible it’ll be at $5 a gallon for fuel.

Kleen: I have owned several motor homes that I used to haul them in, and that worked well. But a few years ago I bought a Toy Hauler trailer—a camper trailer from which the back end opens to load ATVs or motorcycles. They also make a great camper, so you have all your stuff with you, including an accessible restroom and shower. Camping to me just makes any trip more complete. Cooper: How do you get into your trailer? Kleen: I use a Super-Arm lift in my trailer. It is the same one I have used in all my motor homes. I learned after buying many wider doors over the years, that I can use a stock-width door with this lift. Once I’m off the ground, all I need to do is pull one wheel off the wheelchair and set it in inside the door. After I’m through the door, I put the wheel back on. Cooper: Why can’t you just roll in the trailer using the rear ramp door? Kleen: If you’re not hauling anything you can. But if you’re camping by yourself, you don’t have anybody with you to shut the door. If you’ve got your bike or ATV in the back, you can’t get around it. I’ve seen people marketing the toy haulers as handicap accessible campers because of the rear ramp doors. The way I have my camper setup, I can travel by myself. Cooper: Some of them are automatic; you just push a button and the door comes down. I always thought that the inner door—normally there’s a door between the vehicle compartment and a living area—should be wider. Kleen: Mine doesn’t have the automatic rear door. And I do not have the divider wall. I have just a sliding door. I looked at a lot of them, wondering what it was going to take to modify the bathroom. This one had a floor plan that worked well, because there’s a queensized bed crossways up front. That’s another thing I wanted: one that had the bed made up all the time, not one that you needed to unload your ATVs or motorcycles to fold down the bed. I wanted the bed up front, and this one had the bathroom next to the bed. I just removed the divider wall and turned the toilet sideways so I could transfer right from the bed to the toilet, or wheel right up to it in the chair. That works really well. Cooper: There’s a company called RV Décor that was remodeling RVs to begin with, but now has gone into modifying them so they’re accessible. Apparently there are a lot of people who live in their RVs and travel around. Or maybe they’re just aging in place,

Cooper: Apparently that’s what some people do. There are even groups of people who rendezvous in the same place each year. They’ve created a community. If gas prices stay this expensive, it will cost them a lot, but it’s still cheaper living overall. Kleen: I could see traveling for several years. I’ve known several people who have sold their houses and now live in their motor homes full-time. We have a lot of people from Iowa, retirees and farmers, who just load up and get away from the winter and go to Arizona, Texas or Florida, for example. Cooper: What about your mobile Senator, Tom Harkin, is he here much or is he mostly in DC? Kleen: He’s in DC most of the time. He’s been a tremendous help for all Americans with any type of disability or limitation. His leadership and unending work with ADA has improved the lives of millions of people. We owe him a big ‘Thank You.’ Cooper: He writes for us on a regular basis… At this point, we’re headed over to one of the hilliest areas in Iowa? Kleen: That’s right. We have southern Iowa and both the east and the west that have some hills, but where I’m from, it’s flat and all farmed. A friend came up from Georgia one time and said it was so flat here that he could stand in the back of his pickup and watch his dog run away for three days. (laughs) Cooper: (laughs) That’s funny. So tell me, how many off-road vehicles do you have now? Kleen: I’ve got three ATVs, a Kawasaki V-Force 700cc, a Kawasaki 650 Brute Force and a Yamaha 700 Grizzly with power steering. Cooper: How did you get involved with this ride today? Kleen: Kawasaki was coming to Iowa for this Teryx event, and I was lucky enough to be asked to join in. They put automotive hand controls on the Teryx I’ll be riding. They’re doing a test drive out here, taking some pictures, trying to show people who may have limitations that there are ways to get out and ride. Cooper: How did you like it? ABILITY 23

Dan Kleen modified his Kawasaki Teryx with hand controls for power and braking

Kleen: I have never hit a deer with a bike and, knock on wood, I hope I never do. Cooper: Believe me I understand. Tell me more about how you reach out to riders with disabilities?

Kleen: It was a blast! It’s very comfortable. You’ve got the bucket seats, the seat belt and shoulder strap, so you can feel very secure. And the hand controls work great. It’s easy for me to transfer. Cooper: So you can load your wheelchair in the back? Kleen: Yes, it can be set behind you in the rear cargo box. There is plenty of room for the wheelchair and other items you want to carry. I can really see where this would work great for hunting trips. I wish I could have had this Teryx last fall when I shot a mule deer in Wyoming. Last year, I had a good hunting season. I harvested a mule deer, two antelopes and four white tail deer. Iowa’s got an overpopulation problem with deer, especially in the southern counties. We have 99 counties in Iowa and many of the southern ones have anywhere between 2,000 and 4,000 bonus doe tags. That’s after all the other deer hunting seasons. A couple years ago the state also started a rifle season, just for some southern counties to try to get more people to come and harvest more deer. Deer are damaging crops and costing farmers a lot of money, so hunters are getting extra tags to help keep the population down. Cooper: I’ve only bagged one deer in my life. I did it with a motorcycle. It was very painful. I was in my teens and I had this new dirt bike. I was headed out to join up with some friends, and I was flying down this dirt road deep in the woods when a deer jumped in front of me. And as I thought Boy, was that close, I plowed right into a second one. I curled up as I tumbled along the road. The bike was also flipping over and over, and I thought it was going to land on me. When the dust settled I was bleeding a lot, but I also hit the handlebars right under my ribs, so I didn’t know if had internal bleeding, as well. I tried to find my way out of the forest. Luckily, I fainted near where a church group was camping out, and they got me to the hospital. Well I got the first deer of the season, the hard way. It was a small town, and everybody heard what had happened. Somebody came and got the deer. 24

ABILITY

Kleen: Yes. We had our conference in West Virginia a year ago, and I was sitting in the parking lot in one of the riding areas and a young man saw me in my chair. He came over and started talking. I could tell he had leg problems. I think he was born with spina bifida. His family lives there in town, and he rides every day. He had an ATV with 60,000 miles on it. It had a radio on it. He rides around and talks to everybody, kind of the local unofficial host of the trails. He knows everybody and knows where to go; he’s a super-cool kid. I started talking to him, and he wanted to know what NOHVCC was. I told him about our safety programs, our youth education. I said, “If we give you materials, would you be willing to hand them out? You talk to more people than anybody.” He said, “I talk to everybody.” Now he hands out our literature for us and tells people, “Make sure you wear your helmets.” It’s a really good deal. I always tell people with any type of limited mobility, health problem or even the elderly that there are not many sports where we can go out with the kids and keep up with them like you can on an OHV. Last time I was in Utah for the Rocky Mountain ATV Jamboree, there were a lot of elderly couples getting the side-by-sides and going out on their own. There was one couple—I think he was 81 and she was 78—who would ride every other day. They’d go out one day, and take a break and relax the next, and then go out again. They loved it. They had that thing tricked out with shiny chrome wheels. These vehicles keep people out enjoying nature. Just the independence of getting out there and doing and seeing the things you enjoy is the best medicine there is. kawasaki.com nohvcc.org timberridgeiowa.com

ABILITY 25

ABILITY

Jeanette Bolden

n this pair of interviews, ABILITY Magazine’s Chet Cooper speaks with Bobby Lanier MD, who is championing a promising new treatment for allergic asthma. But first Cooper talks with Jeanette Bolden, who won a gold medal as part of the 4x100 meter relay team during the 1984 Summer Olympics, and is coach of the 2008 U.S. Women’s Olympic Track and Field team. She grew up with allergic asthma, improved her self-esteem by running track, and went to the Olympics in Beijing, China, fortified by the medication Lanier recommends.

and they kept you for six to nine months. You stayed to get more of a grasp on your asthma, and to educate you and your parents about the condition. My mother learned about giving injections while I was there, such as epinephrine for when I had really bad attacks. One of the physical activities that everyone had to participate in was learning how to swim. So that’s when I got introduced to a physical activity. It didn’t cure my asthma, but it helped me to not be afraid of it, and not put limits on myself. Cooper: What was the trigger for you?

Chet Cooper: As a child growing up in Compton, CA, you were an athlete, and yet you had issues getting out there and runing around?

Cooper: I’ve never heard of that happening before. Were those kind of places common? Are they still around?

Bolden: There were so many different triggers for me: Dust, mold, mildew, pet dander. My food allergy is fish. The people at the home helped me identify my different triggers. When I came back home to Compton, I took my sister to the local park to join the track team. I asked the coach if I could join, too. He said yes. When I told him about my asthma he said, “If it doesn’t bother you, it will not bother me.” So I started running track. I used to hide my inhaler in my sock, because kids can be cruel. One little boy found my inhaler and started throwing it in the air, calling me names like, “Asthma Face” and “Spasma Girl.” But I built up my self-esteem running track. It was almost like I’m running track and I have asthma and I’m winning. Asthma made me a more determined athlete.

Bolden: A lot of large cities had residential homes for kids with asthma. The one I went to was a dormitory,

Cooper: So did you get the inhaler and spray it in his face and run?

Jeanette Bolden: I was born with asthma. I’ve had it all my life. Not really knowing much about asthma, my parents and I just went back and forth to the emergency room numerous times throughout my childhood, due to various allergies. My asthma was so severe that when I was in the sixth grade, I was taken out of my home and placed in Sun Air Home for Asthmatic Children.

ABILITY 27

Bolden: (laughs) I hadn’t thought about doing that.

a taste of the heat, and still gave it their all.

Cooper: He deserved it. (laughs) So your life basically revolved around athletics and sports at that point?

Cooper: Have you coached any athletes that have allergies or asthma?

Bolden: From then on. In high school I ran track. I was hospitalized for the last time when I was a junior in high school, coming from a meet. After that I knew how to manage it better.

Bolden: I’ve coached some at UCLA. Asthma is the leading cause of absenteeism among school-age kids, so a lot of people have it. A lot have allergic asthma. So I think a number of Olympians on the team may have exercise-induced asthma, and not know it.

Cooper: When you say “manage” your asthma, were you doing anything specific? Bolden: I took my medication and, to the extent that I knew what they were, I stayed away from things that would cause me to wheeze. For example, when I was running track at UCLA in the early ‘80s, I would wake up in the mornings wheezing; I had tightness of breath and I was coughing a lot. Come to find out, I was allergic to feather pillows. Cooper: Did you do the allergy tests? Were you taking shots? Bolden: I was always so busy that I didn’t take the allergy shots regularly. I definitely took the allergy tests, though. Cooper: You won the gold, and then came to coach the Olympics? What was your path?

Bolden: Yes. I’m associated with a fantastic website called AsthmaOnTrack.com, which is really a resource where people can learn more about asthma and more importantly, allergic asthma. They can go to the website and learn more about my story, and what type of asthma they have. they can find out about specialists in their area, about the IgE tests, and really educate themselves on allergic asthma. It wasn’t until recently, when I found out about allergic asthma, that I began taking Xolair, and now, it’s under control. Managing it is one thing, under control is another. I really want people to know that with asthma, you don’t have to sit on the sidelines and let life pass you by. You can get engaged in the things that you are passionate about. Cooper: Xolair is taken once a month, right?

Bolden: I’ve just finished my 15th season at UCLA. There are certain criteria that you have to fulfill in terms of being an Olympic coach. You get voted in by a committee of your peers, which includes some administrators, some UCLA track and field officials, and also elite athletes. One of the criteria, but certainly not the only one, is that you have to have gone to the Olympic games or been a world-class athlete, having coached a worldclass athlete or been coaching for a significant amount of time, which I have. I’ve been blessed to have very good years at UCLA. We won two national indoor titles and one national outdoor title. So that really helped my “status” in terms of USA track and field. I’m thrilled to be an Olympic coach. When we finished the U.S. Olympic trials in Eugene, OR, I knew we had a great, great team.

Bolden: Yeah. I’ve been taking it about nine months.

Cooper: Had you been to Beijing before?

Bolden: School starts at UCLA the last Thursday in September, so I’ll go back to being a regular old college coach. Also, my family owns the 27th Street Bakery in Los Angeles. It’s been in my family since 1956. We ship pies all around the country. We serve sweet potato pie, pecan pie, sweet potato pecan pie, and I’ll go back to doing that and raising my kids.

Bolden: No. Cooper: Had you heard about the air quality there? Bolden: Oh, definitely, I know the local organizing committee did all they could prior to the games to reduce the amount of air pollution. More than anything it’s the heat and the humidity that the athletes had to contend with. We talked with them about dehydration. Our Olympic trials in Oregon were hot, too, so they got 28

Cooper: So a part of what you’re doing now is promoting the treatment you’re receiving?

ABILITY

Cooper: How soon did you notice a difference in your quality of life? Bolden: Within about five months. One of the biggest things for me is, a couple years ago we adopted a pet from the pound, and she had to stay outside. Now she can come in and join the family. Cooper: So you were allergic to dogs before, or just the dander? Bolden: Really the dander, especially from cats. Cooper: So what happens after Beijing?

Cooper: Anything else you can think of that you would want to share? Bolden: I don’t think I would have accomplished as much

as I have in athletics if I didn’t have asthma. But it really comes to the point where you have to believe that life is worth living and get your health in check. Interview with Bobby Lanner, MD Cooper: How does air quality affect athletes? Lanier: Athletes are like everybody else: They’re affected to a certain extent. How much is always the issue. Beijing is foggy like San Francisco, add to that 100plus-degrees heat and tons of humidity and boy, you’ve got a soupy mess! I was certain that the athletes were going to be shocked for a moment when they got off the plane in Beijing, but I think the Chinese government took steps to make the best of it. I’ve gone there pretty frequently, and my sense was that it wasn’t going to be nearly as severe as what we thought initially. China has gone through unbelievable construction in the last 10 years. Last year about half the world’s concrete went to China, most of it to Beijing. And the construction dust was horrible. It’s better now. I think that the government put a moratorium on construction, and allowed driving only on alternate days. I think people with severe emphysema have it a lot worse than people with asthma. A lot of times people with asthma are affected more by what’s in the air from an allergic standpoint, pollens, molds, things of that nature, and it turns out a lot of times that people are more involved with allergy than almost anything else.

Cooper: So let’s talk about that. I’ve heard that 90 percent of people with asthma have allergic reactions? Lanier: I think that probably 60 percent of asthma is allergic in nature. Maybe as many of 90 percent of asthmatics have some level of allergy. So it’s real common. It’s part of a genetic trifecta here. Allergy, asthma and eczema all kind of go together. There’s a genetic link, and people who have asthma usually have one of the others as well. The most common combination is allergy and asthma, and the overlap’s pretty brutal. I think that people will get tolerant of it after a period of time. Yet there’s a huge misconception about who has allergy and what it is.

Dr. Bobby Lanier

ABILITY 29

If you look at the ads on TV, you’d think everybody’s got an allergy. But in truth, only about 30 percent of people in the world do. Boy, when they have it though, they’ve got it big. A lot of times people come to me and say, “I just feel so bad; I’m always so sickly. Can you give me something to build up my immune system?” Of course my response is, “You’ve got a high functioning immune system. That’s your trouble!” And in particular, the problem is the allergic antibody, which is called IgE. Ig is the prefix that implies immunoglobulin, so this immunoglobulin E or the allergic antibody is at the root of the evil here. That’s a relatively recently discovery, by the way. I think the antibody was only really discovered around 1970. So we’d gone hundreds of years really not knowing what allergy and asthma is about. In the last 30 or 40 years, we’ve come to understand a lot more about it, and a lot of it has to do with immunoglobulin E. So the Holy Grail for us, and for me as a physician in particular, is to look for a way to cripple that one particular antibody without hurting everything else. If we do that with steroids, it’s like using a shotgun. Sometimes you take out a lot more things than you want. You need a rifle. The new research and development has gone toward targeting a new class of drugs that really gets to the antibody itself. And that makes a huge difference. Cooper: Where do trials stand now with this new rifle approach? Lanier: Well, the anti-IgE antibody has been accepted now for about four or five years, while research on it has been going on for as long as 12 years. I’ve been involved with it from the beginning because it’s an incredible concept. It was approved for adults about five years ago, and in the next year or so it will be approved for people 12 and over, maybe even younger. It’s called Xolair or Omalizumab and it’s designed as an injection. The names sound like something from an alien planet. When injected, it seeks out every allergic antibody you’ve got and ties it up. This is different from allergy shots, which are kind of the time-honored way to deal with allergic disease, because those things are highly specific. For example, if you are being given an allergy shot for your sensitivity to oak, it doesn’t help you with ragweed. But in the case of Omalizumab or Xolair, it doesn’t matter if it’s carrots or avocados or ragweed, it gets to them all. It diminishes the level of reactivity or allergic disease quite a bit. What we’re hoping, Chet, is that we’re actually moving past an era of chemical pharmaceuticals. Most of the drugs we have to treat asthma right now are sort of like giant paper towels: They wipe up the mess once it’s occurred, but there’s still a mess. What we’re trying to do is get deeper and deeper into the root of this thing to get at what causes the disease. So this anti-IgE for allergic asthma actually may get more to the root of the disease than any of the chemicals that we now use, and it 30

ABILITY

may even have some hope about changing the whole course of the disease. That’s what we’re hoping for. Cooper: So it would not allow a trigger response to occur in the first place? Lanier: Exactly. When injected, it seeks out allergic antibody, ties it up, and that takes away the fuel for the allergic process. Without the allergic antibody to fuel the disintegration of what’s known as mass cells, then the process theoretically should cease altogether. It looks like that’s going to be the primary mechanism, tying up the antibody that produces allergy. Cooper: You said only 30 percent of people actually have allergies. What’s going on with the other 70 percent who think they have allergies? Lanier: It’s almost as if anything above the navel that is uncharacterized is called an allergy. In truth, there are lots of things that can affect both the nose and the lungs other than an allergic antibody. About half the people who have nasal dripping, running and sneezing will have allergy, and the other half will have something called vasomotor rhinitis. It’s more of a hormonal issue. So there are people who experience the symptoms of allergy, but they don’t have one. For example, if you take a handful of pepper and throw it in someone’s face, they’ll sneeze, because that releases the chemical histamine, which is a normal body chemical. So while it’s possible to simulate allergy, you could continue to throw pepper in someone’s face and they would get very tolerant to it after a couple of hours, and you wouldn’t produce that initial reaction again. But if you’ve got ragweed sensitivity, or if you’ve got peanut sensitivity, for example, and you get exposed to that, that problem is going to get worse with repeated exposure. So allergy involves a defensive antibody in the immune system that probably had a terrific reason for being there, but there are a lot of things that probably had a reason for being there that don’t have a reason any more. For example, the appendix, what’s that about? We don’t know why you still have that extra organ. It may have had a function some time in history. We think that the allergic antibody probably did have a function some time in evolution. We think that the allergic antibody protects people from being infected with parasites, with roundworms, flatworms, tapeworms, lungworms, that type of thing. It used to be that that was an extremely common and very important public-health problem. But you know, we haven’t had that in almost 200 years, yet some people have this hereditary ability to defend themselves that now has got nothing to fight. And the allergic antibody, if it doesn’t have what it was designed to fight, finds something else: grass, ragweed, pollen, house dust. And probably the reason is that those things bear a similarity to some of the parasitic protein. The immune system gets confused, makes a mistake and

defends you against something that you really don’t need to be defended against at all. People with the combination of allergy-asthma-eczema have some advantages, even today. They may live longer. They may have better resistance against some forms of cancer. I mean, this is not altogether negative. So I tell them, “You’re going to live a long time, but man, you’re going to pay a tax.” Cooper: Some of these allergies, let’s say peanuts or bee stings or something, could cause death to a person. Where do you think that was coming from as a defense mechanism? What was that about? Lanier: What the antibody was designed to do is attach to a basic cell that exists throughout the lungs, nose, skin, blood vessels, etc. called mass cells. These cells can take granules of chemicals like histamine. Now, the issue was that the antibody was maybe misdirected, but it still goes back to its original host, which is the mass cell, and with re-exposure can cause those mass cells to explode. It then releases histamine, and that’s what you’d think of as an allergic event. As long as the histamine is released in some confined area, like, say, the nose with pepper, that’s not anything worse than cosmetic. But when histamine begins to be released at distant sites, like lungs, liver, kidney, blood vessels, then you have a tremendous dilation of those blood vessels, leading to such things as shock and death. So it’s an extension of what used to be protection, but carried to an extreme. Probably anaphylactic reactions, or allergic reactions, have existed forever. We know that a couple of the pharaohs died from bee stings. So we know that is not a new phenomenon. Cooper: What are your thoughts about exerciseinduced asthma? Lanier: Exercise-induced asthma is part of a bigger picture, usually. Asthma has to do with bronchial constriction, with the muscles around the lung tubes squeezed down, and you produce that funny sound. Sometimes swelling occurs inside the lung, too. So when people have the basic condition, various triggers can set it off. For example, if you put somebody with asthma in a very cold room, on occasion that’s enough right there to make them wheeze. So people who have certain types of asthma know that they just can’t ski. They can’t tolerate a really cold climate. You may see people with asthma walking around New York City or Chicago during the wintertime with scarves around their face or mufflers because they need to have the warm air. If they don’t, it’ll set off their asthma. So heat, cold and general irritation can trigger a bronchial spasm. With exercise-induced asthma, of course, exercise is one of the triggers. Generally what happens is that people learn to live with their asthma. But if you have exercise-

induced asthma and you know that it’s gonna give you difficulty if you run, then you don’t run. Kids in school, in many cases will opt out of PE, or they’ll become a bookworm, because they know they can’t run. Cooper: How do they get around this? They can do short exercises without problems. But when you get people’s muscles warmed up, big muscles, like legs, for example, for more than three or four minutes, if they have asthma, that’s a powerful stimulus for exercise to produce bronchospasm. There are ways to prevent that and ways to treat it, to make it more manageable. In fact, in the Olympics, you’ll probably see the use of common inhalers prior to exercise. What that does is stop the bronchospasm, but it doesn’t stop the swelling in the lung tubes. It’s real noticeable in young people, especially track and field people who can really be bugged by this, or a basketball player sometimes. It doesn’t prevent you from being able to compete at Olympic levels. Obviously Jeanette Bolden won a gold medal. As time has gone by and the technology has improved, we’ve been able to control most people’s conditions and keep them out of the emergency room—if they’ll take medication. But as with everything, now that we have control of it, the goal is to find some way to stop it from happening, to get more to the root of it. That’s where these new biological therapies come in. Those things may actually—I don’t use the word “cure” very often, but it may really put these diseases into remission, which is important, because nothing right now will stop the disease progression. Even steroids won’t stop the disease progression. We’re hoping anti-IgE will actually stop it. Cooper: How does this relate, then, in the exerciseinduced asthma when there’s evidence that high-intensity warm-ups help people with asthma? Lanier: By staying warm, you deliberately invoke what would be an allergic stimulus, and once you get to that level, you keep it there. I think that a couple of NBA athletes and some NFL athletes have kind of pioneered that concept. They discovered it themselves. Basketball’s Dennis Rodman, who was kind of a wacky guy in a lot of ways, had really bad asthma. When he played a game, especially toward the end of his career, he would ride the exercise bicycle on the sidelines, even when he wasn’t playing. People thought that looked odd, but he recognized that if he could get warm and stay warm, he didn’t have difficulties with his asthma. Jimmy Smith from the Carolina Panthers does the same thing, pedaling an exercise bike on the sidelines, to keep his muscles in motion and desensitize himself to the affects of exercise. But people go to extraordinary lengths to prevent their asthma, and we’re just ABILITY 31

basically looking for a better way.

Cooper: What about inhalers?

Cooper: Talk a little bit about the role of diet.

Lanier: Tried that. They don’t seem to work well with this particular drug. Proteins have to be delivered into muscles or directly into the bloodstream. But the Xolair shots are relatively small, and the material is two or three cc’s, which is not too bad. It goes directly into a muscle or into the bloodstream to get the level of drug needed to control the system.

Lanier: We look for ways to improve people’s diets and make a difference in asthma, but when I see somebody with allergy and asthma, the first thing I say is, “You didn’t pick your parents very carefully.” This is a genetic issue, and you can’t really affect it much. You can make it worse if you gain weight, and exercise may make it easier to tolerate, but the issue is still there. This new therapy we’re doing is different than the old, time-honored allergy shot. As I mentioned, it gets everything. It has an advantage in that people don’t take medicine very well. If you look at the number of times people refill their asthma medicines every year, some of the statistics are startling. Even people with moderate to severe asthma may only refill their medicines two or three times a year, which is really bothersome. So the idea of a treatment like the new one, which is given by injection once a month, is kind of exciting. We think people will follow through with that. Whereas getting them to continuously take a medication when they’re feeling OK, is hard. All of us tend to stop taking medication when we’re feeling well. That’s especially true for people with asthma. but then it catches up to them and they crash. Cooper: When will the new treatments be available? Lanier: Now. But so far only for people 12 and older. It will be available hopefully within the year to younger children. Xolair, or Omalizumab, its generic name, is a serum injection and really simple to administer. Virtually any doctor can do it. What we’re trying to do is get the word out to people, particularly older people, who may not really realize that there have been some huge breakthroughs just in the last couple years. This may especially help people who take heavy amounts of inhaled or oral steroids, which is pretty hazardous in the long run. I hear every once in a while somebody telling me, “I go see my doctor and I get my allergy shot twice a year.” What they’re really talking about is, they’re going in and getting a whopping dose of cortisone, which suppresses the immune responses, but is not very helpful long-term because of the bothersome side effects.

Cooper: It’s by prescription? Lanier: Yes, and it’s not cheap. All of these new biotech treatments for arthritis, asthma and other immunologic disease are expensive. It’s because they’re new and require a level of manufacturing that goes beyond the chemical process of just punching out pills according to a big formula that you mix up. This is actually biologically produced, so if people don’t have insurance that covers it, it makes it costly to use. In many cases, though, the trade-off for insurance carriers is that they have a more expensive drug than is currently used for asthma, the results can be so good that the savings in a year make it worth it. It doesn’t take long to know if this medication works well, by the way, just two or three shots, maybe as many as four. Cooper: After a couple years of using it, it is possible that something might occur within the system that makes the drug less necessary? Lanier: Good insight. That’s what we’re hoping for, Chet. Right now, the protocol is for this drug to be used for long periods of time. As part of my clinical research, I’ve made it a habit to discontinue people after a certain period of time, usually about two years. But I have a number of women—because it’s mostly women who have this issue—who have been off this medication after using it for a couple of years, and they look really good overall. We think this may be the beginning of a new thinking about the whole process. It’s conceivable, but not proven, that it may change the immune system itself. olympics.com xolair.com 27thstreetbakery.com

Cooper: Is there perhaps an oral application you could use instead of a needle? Lanier: The problem with that is that stomach acid is a huge barrier to absorption of certain proteins. What the digestive system is all about is breaking down proteins. That’s the way you live, the way you survive. Your gastrointestinal system has been designed by the good Lord to break down anything you eat, from soup to nuts. The only way to circumvent that at this moment is by doing the injection. Bolden and her twins. 32

ABILITY

ABILITY 33

‘I

thought you said this was disabled volleyball. Oh wow!’

With serves, blocks and spikes zipping around his camera gear, the international wire-service journalist, who had flown six hours to Phnom Penh to cover the 2007 National Standing Volleyball League, couldn’t quite believe that the majority of the athletes on the court were amputee landmine survivors. He was not the first to be shocked by these Cambodian athletes who are now asserting their impressive power on a world stage.

THE HEIGHTS It was in late 2007 that Cambodian disability sport proved to the nation and the world that it had entered the elite level of international competition. After the most hotly contested National League World Championships ever, the Cambodian National Standing Volleyball team won the hearts of its country by taking bronze in the semi-finals against Poland in the historic Volleyball World Cup, held in Phnom Penh. “The World Cup was a brilliant portrayal of the ability of Cambodian landmine survivors. They are now recognized as the nation’s sporting heroes,” said Christopher Minko, Founder and Secretary General of the Cambodian National Volleyball League Disabled (CNVLD). “The event was a great success for the nation of Cambodia.”

fulfill its objective of taking the No. 1 spot in the world. Coach Christian Zepp leads the charge and is determined to take the gold. “I’d like to deliver some necessary and new skills to make the athletes strong, tough and fit enough to claim No 1. I want to lead the Cambodian National Team to the finals of the World Cup and win!”

THE HURDLES Despite successes, it’s been a long, turbulent journey for everyone involved as the stakes and the pressures have increased. Cambodia remains an exceptionally challenging environment in which to work, even though the hard-fought-for acknowledgement is finally beginning to pay dividends. The immense strength of sport lies in its essentially apolitical status, and one of the CNVLD’s greatest successes has been its ability to bring former foes into the sports arena. “The unique and unrivalled power of sport to bridge social and political divides is becomingly increasingly recognized within the post-conflict development paradigm,” says Peter Bartu PhD, formerly of the International and Area Studies Department of the University of California at Berkeley. He has studied CNVLD at length, and posits: “As a sustainable civil society initiative, inclusive national sports programs serve a multitude of functions from improving individual and national self-esteem and health to a means for post-conflict nations to re-enter the political and economic international community.”

The only annual National Standing Volleyball league in the world consists of 10 teams from around the country including Phnom Penh, Kompong Speu, Takeo, Kratie, Prey Veng, Battambang, Siem Reap and Pailin. From humble beginnings in 1999 in which the first ever Cambodian National Team competed at the 2000 Sydney Olympics, the National League now attracts numerous prestigious sponsors as the CNVLD moves towards its objective of achieving sustainability through corporate sector support. The 2008 National League will be played in the Olympic Stadium for the first time ever, a huge breakthrough for disability sport.

CNVLD’s administrative staff of three—all working as volunteers—manages more than 300 athletes with disabilities. With the support of additional local volunteers, they are able to host various events. About 80 percent of the organization’s income is funnelled directly into supporting the athletes. Strict adherence to financial and operational transparency is not easy, but it has led to the CNVLD being recognized at the highest levels, including receiving a 2006 Best Practices Sport and Development Award from the United Nations and being named a finalist in the 2008 Nike Changemakers Sport for a Better World competition.

The Stand Up Challenge—an open invitation to any able-bodied volleyball teams who think they can defeat a CNVLD team—is now three years old and has withstood the best efforts of the Australian Defence Forces, the Cambodian able-bodied volleyball champions, the International School of Phnom Penh’s senior team, the elite CTN kickboxers and the Hagar Soya factory team. None have yet come close to beating them.

The greatest hurdle, however, remains the exclusion of Standing Volleyball from the Paralympic Games since the Sydney 2000 Olympics, a decision which has elicited sharp criticism from developing nations who feel that low-cost, participatory sports are being excluded in favor of those only developed nations can afford to play.

Preparations are also now underway for the national team’s participation in the November 2008 World Cup in Bratislava, Slovakia, where Cambodia intends to

In tandem with the success of the National Volleyball League and Cambodia’s rapidly improving infrastructure, CNVLD launched a national racing wheelchair

ABILITY

THE FUTURE

program in 2005. In just three years, it has evolved from concept to reality to corporate sustainability through the sponsorship by ANZ Royal Bank. “The CNVLD approach is light years ahead of the ‘cap in hand’ mentality,” Minko added. Rather than seek out charity, the organization works to convince the corporate sector that Cambodian disability sport has evolved to become an elite level spectator sport. The ANZ Royal CNVLD Wheelie Grand Prix is now in its second successful year with 27 athletes from six clubs around the country. Roughly a third, or 10 of the 27 athletes are Cambodian women, including five in the Battambang All-Women’s Racing Team who have not only proved to be the leading and most committed athletes in the program but also emerging media stars. A key objective of the Wheelie Grand Prix is to encourage more women with disabilities to participate in sport. Recently, the UN Division for the Advancement of Women issued a report, ‘Women, Gender Equality and Sport,’ in which it singled out the team for being one of the leading examples of promoting the social and economic inclusion of women with disabilities.

At the grass roots level, however, it’s all about the athletes and the impact on individual lives. A recent study by the Sport for Peace and Development International Working Group concluded that “hope is the most important attribute participants gain from the program. Most CNVLD athletes acknowledge that losing a limb made them contemplate suicide but by becoming part of a team, their hope was renewed.” CNVLD still has a ways to go before it meets its ultimate objectives. Says Minko, “With more than 40,000 persons who are disabled in Cambodia, we’re just touching the tip of the iceberg. It’s merely an issue of resources. We strongly believe that Cambodian athletes who have a disability can take gold medals in a variety of disciplines. It’s taken 10 years to build a solid foundation and we’re only really just getting started.” by Neil Wilford Neil Wilford is CNVLD sports programs manager. standupcambodia.net

ABILITY 35

Martin and son Alec 36

ABILITY

ome of his best-known films include Hancock and the Pirates of the Caribbean series, and there are plenty more where that came from. When ABILITY’s Chet Cooper caught up with Martin Klebba, the popular actor was in preproduction for a new movie, in post-production for four more, and had just completed a sixth. Still, he finds time to romance his finace, ride his motorcycles and run a nonprofit foundation called Coalition for Dwarf Advocacy, which puts every dollar it receives towards helping little people. Chet Cooper: What have you been up to? Martin Klebba: I just finished some stunts up in Napa last week for an Adam Sandler movie. It was actually for another little person—an actress who didn’t want to do them herself. So I was actually stunt-doubling for her. Then, I’m shooting a short soon up in Portland where I play a drug dealer. Cooper: And that wasn’t a joke when you said that, right?

Klebba: Apollo Thorne? We’re still in preproduction. From what I’ve read in the script, it’s going to be fun. Remember the movies Gremlins and Goonies? Cooper: Sure. Klebba: It’s kind of like Gremlins and Goonies meets 30 Days of Night. The story is about a father and daughter; they’re not related by blood, but their love is thicker than blood—literally. He’s overprotective and coping with his daughter becoming a woman, while she’s dealing with finding out that her father is a vampire slayer, and that she happens to be half-vampire. So what’s to become of her? How will Apollo reconcile this? Is there a cure? What powers does she possess? All this and her father is four feet tall. There’s probably a lot you could say about Apollo’s height, but it’s a positive thing, given that he can outmaneuver anyone taller and he has the ability to fight evil no matter where it hides. I look forward to shooting it. Cooper: Any shoot dates set yet?

Klebba: (laughs) No, a “short” is kind of like a pilot, maybe 20 or 30 minutes long. We’re gonna try to pitch it and sell it. “Get the right investors and a bigger budget and bring in some big names, juice up the plot a little bit more.” Cooper: Do they pay you in shorts? Klebba: You get a promise of deferred payment, so if the thing gets picked up, you either get the guarantee that you’re gonna play the part or you’ll get paid on the back end. I do a lot of these things and I get a producer’s credit as well. That way, no matter what, I’m gonna start getting some money out of it. Cooper: Tell me about the new movie you’re doing?

Klebba: They’re thinking early 2009. The guy who wrote it is going to direct. This’ll be his third film. They want to get a big name for the vampire, too, so there’s box office draw. But I think the story’s unique in the sense that you don’t usually see a little person or somebody with a challenge get to play a role like that. That’s mainly what I do. Even in Pirates, I didn’t want to be the “dwarf pirate,” I just wanted to be a pirate who happened to be small. I mean, there are jokes that we play off of, but at the same time, I’m just as scrappy and badass as the next guy. Cooper: Your basic bad-ass dad… Klebba: The funny thing about my character is that he’s a high school science teacher who’s so determined to ABILITY 37

the flight. Without our help, he wouldn’t have had the money to get there. We also gave a $5,000 scholarship to one of the applicants who’s finishing up a graduate degree. We’re doing a fundraiser in Salt Lake City, UT, and my friend Lee Arenburg, who played Pintel in Pirates, is going to come out to do some TV and radio to promote it. We’re going to sign autographs and take pictures to raise money. I’ve got my career, and at the same time I’ve got this other thing on the side where I can help people. Cooper: How long has CoDA been around? Klebba: About two years. One of my great friends, Matt Roloff, who does the show Little People, Big World, is president, because he had prior experience as president of Little People of America. I’m the vice president. Sometimes I go out on movie shoots and I don’t have time to hold the reins, but he’s generally home filming the TV show and can be around a lot more than I can. keep his daughter from dating this one boy, that he totally misses the fact that there’s a really hot librarian who’s interested in him. So he puts his energies into fending off this boy, and at the same time has to deal with his vampire nemesis of many years. Cooper: Sounds like it could be good. Klebba: I think so. When they came to me about it, I was like, “Let me read what you have and see.” Because you don’t want to become attached to something just to become attached to it, but I read it and I was like, “Oh, yeah, this is great!” I could go out there and do the leprechauns and the elves and the goblins, like every other little guy in Hollywood, but there’s a few out there who are doing legitimate roles, trying to be taken seriously as real actors. That’s what I’m trying to do. Cooper: You started an organization to benefit little people. Klebba: It originally was called the Martin Klebba Foundation, but then upon further research I found out that you have to have a board of directors to get a 501(c) tax ID, so that way everything’s on the up-and-up. I don’t want anybody thinking that any donations were going into my pocket. One hundred percent of every dollar we get from donations goes to helping little people, whether it’s little-people couples or average-sized couples looking to adopt little people children from around the world, or maybe a little person who needs some accessibility features on a car or a home. I recently attended the national convention for little people in Detroit, which happens to be my home, so this year CoDA [Coalition for Dwarf Advocacy] did two things. We sponsored an athlete to attend the conference, paid for the hotel, the conference registration and 38

ABILITY

Cooper: Where does he live? Klebba: Portland, OR, and that’s where we’ve made his office. Have you ever seen the show Little People, Big World on TLC? Cooper: Yes I know about the show. I think they are doing well. Klebba: They’ve done well. With a lot of additions to the house, it’s tripled in size since I visited. Cooper: It’s filmed in his house. Klebba: Yes. It’s about his family. He’s married to a really old friend of mine, Amy, from Michigan. Cooper: She’s really old? Klebba: (laughs) I’ve known her a long time. They have four kids. They’re both little people, and their first set of kids were twins. One was average height and one was small, and then there are two other kids after that, who are both average size. So you’ve got three little people in the family and three average size people. Cooper: I always hear good things about the show. Klebba: I’ve been on it quite a few times. The one thing little people don’t like is the “M” word, “midget.” To us it’s like calling a black person the “N” word. The show has enlightened and educated people who might not know that. Or they get some insight into what it’s like to be a little person as far as the daily routines you go, whether it’s driving or doing laundry and dealing with the counters. You go into a hotel and you see that things are really high for a little person.

Cooper: What are some of your pet peeves in the sense of universal design? Do you ever look at certain things and think, “Wow, if that was designed differently.” Klebba: I do, and yet I’m different from a lot of other little people: I’ve always been physically able to do a lot of stuff, so if I have to get something off a counter above me, either I use a small stool or I’ll just climb up on the counter and grab it. My fiancée’s average size, and my son’s average size, so I don’t want to alter my whole house, because the resale won’t be very good unless we sell it to another little person. So, for the most part, the only thing I really can’t do is probably go on some of the bigger roller coasters. I’d love to drive a Lamborghini, but I think it’s hard when the pedals are way down in there, and you sit real low, but I’ve come up with some pedal extensions. I actually sit in a kids’ car seat that my old boss put this beautiful leather wrap around, and it looks just like a Corvette seat that sits on top of my leather Corvette seat. It’s black and not so noticeable. Cooper: It looks more like a jet seat? Klebba: Exactly.

Martin and his fiancee Michelle

Cooper: So with the different accommodations, it’s just been part of—

Cooper: And you say you take the bar stools to the bedroom and dive in?

Klebba: —growing up. I played high school football. I was in the drama club. I think with challenges, you either overcome them or you fall behind and become a statistic. I don’t want to become a statistic.

Klebba: (laughs) Yeah! I get a running start.

Cooper: We’ve done a few articles on universal design. Sometimes I wonder if the engineers who are looking at it actually go to the different heights that are beyond the bell-shaped curve and talk with individuals who are on the extremes of the spectrum, from extremely tall, where they have issues of difficultly getting into cars… I just wonder if those designers are actually talking to humans, or if they’re just looking at measurements.

Cooper: Actually, that’s a health issue, what you were talking about with circulation. You get a blood clot and— Klebba: —you’re done with. Cooper: So whenever you travel, you definitely need to be aware and move those legs and get them out of that position to get some circulation going. Klebba: Right.

Klebba: There was a school in LA where they had the students design furniture and use the dimensions of a little person with their proportions. So these kids made chairs that were really big, so they could see what it’s like if you’re a little person. You’d have to crawl up into it and your legs would become numb, because your feet can’t touch the ground and your circulation isn’t working properly.

Cooper: How often do you take your bike out?

They made beds, exploring what it’s it like for a little person to try to get up into a bed. Do you have to have everything shortened? At my house though, I have a huge king-sized bed, and I think the top of the mattress is close to three feet high, but I like jumping up onto a bed. My chairs in my kitchen are counter height.

Cooper: Must save on gas if you only ride it on stage.

Klebba: I don’t ride it that much any more. I mostly go out for special events, like Intel just paid my way to Vegas and I took my bike on stage, said a few things during one of their big presentations, and then turned around and rode it off stage. So that was cool. The bike has pretty much paid for itself with my personal appearances.

Klebba: (laughs) And it’s loud. My dad has a Harley, and it’s even louder than that, because the pipes are so short. But it’s eight feet long. It’s just as long as any stretched-out, full-sized chopper, except it’s a mini. ABILITY 39

Johnny Depp saw the special paint job I’d done on it, and really loved the work. He said, “I want to sign it!” I was blown away. Then I had to go back and have them wet-sand the paint down so he could sign it, and then we repolished it. So now that his signature’s on there, if I lay it down or wreck it somehow—you know these California drivers—it won’t be worth much. So it’s more of a showpiece now. I don’t know if they’re gonna do any more Pirates, but I know the last time, Gore Verbinski, the director, was hoping I would drive it down the red carpet for the premiere. Cooper: Now that it’s become too valuable to drive around, maybe you need to think about getting another bike built that you could actually use? Klebba: Exactly. But I don’t know if my fiancée really wants me to. I’m going to be 39 years old and even my dad still says, “I don’t know about you riding a bike.” I’m like, “Dad, I’m a grown man. I’m gonna do what I want to do.” I may not ride as much, but I have an older Corvette that I speed around in sometimes. So I have enough toys to play with.

Klebba: I don’t know. I remember him saying something about it, but it was like two years ago. He might have a bike over in France. But don’t quote me; I’m not positive about that. Cooper: I actually did my first fundraiser—Poker Run, do you know what they are? Klebba: Yeah, I get a lot of people asking me to do Poker Runs, and I’m always like, “If you can set it up so I can ride and don’t have to worry about the police,” because they might just say, “Hey, your bike’s not registered,” and they’ll just take it. Cooper: The good part about a Poker Run is there are so many bikes out there that the police, if anything, are just going to help direct traffic. Klebba: But I’m going to stick out like a sore thumb. You never know when cops are going to get their jollies by taking your bike. One time I was on my way to film CSI, and I wasn’t wearing a seat belt in my Corvette, and I was still waiting for my sticker to come for it, and the state CHP officer said, “It’s got to be towed.”

Cooper: What kind of engine is in the bike? Klebba: It’s a 480cc Vanguard V10. It’s also automatic, which helps since, being little, having to work a clutch and shift gears would be too much to worry about in traffic. So with the automatic, I just give it gas and it shifts itself. It’ll get up to about 100 miles an hour. It moves!

When that tow truck shows up to tow your bike away, they’re just going to get it up there, cinch it down, and if it falls over, “It’s your fault because you shouldn’t have had it on the road in the first place.” Cooper: I just had my Harley towed yesterday. Klebba: Uh-oh, what happened?

Cooper: I didn’t even know that they have automatic bikes? Klebba: Yeah, the technology is out there now. Cooper: Riding a bike is the adventure, not necessarily shifting. Klebba: Exactly. I have an 11-year-old son. We go up to Pismo Beach once a summer, take a couple guys and we get on those—I think they might be 250s, or some of them even 400s. We tool around on those and get crazy for about four hours. It’s fun. When we filmed Pirates 3, we were right down the beach from where Pismo is. We had to do a lot of water scenes, like come out of the water as if we had just landed from the other side of the world. Boy, that water was cold! Cooper: Were you also thinking: I need to go over to Pismo and take a ride? Klebba: Exactly. “Come on, Johnny, let’s go get on some bikes!” Cooper: Does he ride? 40

ABILITY

Cooper: I’m not sure. It just wouldn’t start. I called AAA, luckily I have the extended membership that includes motorcycle coverage. The tow company that came out brought a bike trailer. My front wheel fit right into the rigging. I was really surprised. I think because there are so many bikes on the road, more tow companies have special bike haulers. If you have AAA get the extended membership, that way they are going to find the closest tow company that has the ability to handle street bikes. Klebba: With gas prices the way they are, more and more people are switching to scooters. I don’t know if I’d want to be on the highway with one because there are still crazy people out there. Cooper: Yeah, I don’t think I’d want to be on a scooter; I don’t even like taking my bike on the freeway. Klebba: I was doing a movie up in Napa, and it’s a small town with one lane each way, and nobody on the road. To ride out there would be great. But I don’t think it’s a good idea on the 5 or the 101. Cooper: So when you get married, are you two going to move up to Napa.

The good thing is that his Pirates star, Johnny Depp signed is bike. The bad part is that now he can’t ride it and take a chance someone will crash it.

Klebba: I don’t think my career allows for that. If I was Clint Eastwood, I could live far away. Cooper: Go to Carmel? Klebba: That’s where he’s the mayor, right? Cooper: That’s what I heard. At least he used to be. Klebba: We have Schwarzenegger in Sacramento, and Eastwood in Carmel. If you’re a Republican, you’re really happy, I guess. He stopped by the set to see Adam Sandler the day I was there, up at this winery. It’s not often you get to meet the Governator. Cooper: I rode with Robert Patrick, his nemesis in Terminator 2, on that Poker Run I was telling you about. He’s really into motorcycles! Do you know the Boozefighters Club?

Klebba: Wow! That’s a long drive. Cooper: He went for the Memorial Day vets rally. So you do a lot of traveling? Klebba: I do. As much as I like traveling, it takes up a whole day to get to the airport, fly, arrive at the next place. Then you’re in a hotel for sometimes weeks at a time by yourself, just your computer. I miss my dog. Cooper: What kind of dog do you have? Klebba: I’m just joking. My fiancée. Now she’ll be all mad. Cooper: In print it’ll sound as if you really do miss your dog. Klebba: (laughs) Yeah, my little Raider. That’s my dog, his name is Raider.

Klebba: No. Cooper: Is it your dog or her dog? Cooper: It’s the first motorcycle club in the country, started in 1946.

Klebba: It’s my dog.

Klebba: Wow.

Cooper: But she doesn’t like the dog?

Cooper: In the movie The Wild Ones with Marlon Brando—

Klebba: (laughs) No, she loves the dog. She’ll just be mad that I didn’t say that I miss her.

Klebba: I know the guy who actually wrote it. I don’t know if he was credited, but his name is Buck Holland. He and his sister wrote it. He’s actually in The Wild Ones. He’s now Johnny Depp’s personal driver.

Cooper: And you always hug the dog first when you get home?

Cooper: How funny. That movie was based on the Boozefighters. The name came about because these guys were just at bars getting boozed up and fighting. Anyway, Robert Patrick is the president of the LA Boozefighters Club. He’s so serious about motorcycles, that after the Poker Run, he continued on his bike and rode to Washington, DC and back.

Cooper: Now you’re really in the doghouse.

Klebba: Of course!

Klebba: (laughs) She knows I love her. Coalition for Dwarf Advocacy coda-lp.org

or just a moment, try and get past the shoes: Burgundy-on-black Spectator wingtips in a shop window that Isaac Knott passes daily in the new film, Quid Pro Quo. After wrestling with the idea of buying the shoes for several days, one day he springs for them, feeling a warm tingle as he places them on his feet.

Brooks, who does not have a disability, says his initial plan was to do a movie about a person with a disability who overcame an impairment, while helping the person who injured him in the first place. But when he came upon a group of people known as Wannabes, it redefined Quid Pro Quo.

Isaac, who is portrayed by Nick Stahl, navigates life in a wheelchair, having been paralyzed at eight in the auto accident that also claimed his parents. Years later, when he wears the shoes, they seem to give him sensation and mobility in his legs; they even appear to reverse the paralysis that he’s dealt with most of his life.

The filmmaker grew up outside Seattle, WA, hiking extensively in the Pacific Northwest, including the entire length of the Pacific Crest Trail from Mexico to Canada during a break from college. He studied journalism at Western Washington (State) University in Bellingham,and later attended USC on a merit scholarship to study film and writing at the School of CinemaTelevision. He has written for both independent and studio projects, and lives in Los Angeles with his wife and two daughters.

Yet Quid Pro Quo, distributed by Magnolia Pictures, is more than just “another movie about magical shoes,” says director Carlos Brooks. It’s part romance, part detective story. Rather than focusing on the physicality of Isaac, Brooks’ first feature digs deeper to see how Isaac’s problems appear in everyday life. “I was interested in taking this story into the psychological realm, where no matter what our physical condition, we all have the same psychological potentials or limitations that we struggle with,” he says. “Isaac puts on these shoes which allow him to walk again. That send him on a quest where, in the end, he discovers that he has really been investigating himself.” 42

ABILITY

The discovery of “Wannabes,” able-bodied people who inherently desire to have a disability “lit a fire,” says Brooks. “It was my ‘eureka moment’ as a writer, and it’s where the story came from,” he says. When we meet him, Isaac is living in New York and working as a public radio talk show host. He tells stories, many of them about what life is like from the vantage point of his wheelchair. One day he becomes unnerved by an anonymous caller with a story more

Left: Director Carlos Brooks gives actor Nick Stahl notes in Quid Pro Quo. Right: In the film, Stahl portrays Isaac, a man on a quest to understand others, as well as himself.

compelling than any of the ones he tells: A man walked into an area hospital with $250,000 in hand, demanding that one of his legs be amputated. The caller, known only as “Ancient Chinese Girl,” continues to phone in, eventually meeting up with Isaac. Her real name is Fiona (Vera Farmiga), and she leads the deejay into the odd and disturbing world of Wannabes: “I was online doing research and discovered that there were people out there for whom getting help would be the exact opposite of what I thought getting help would be,” Brooks admits. He says he was confused as to why “help” for an able-bodied person would be to have a disability, whereas “help” to people with disabilities might be to regain use of certain functions. Quid Pro Quo shines the spotlight on some of Issac’s challenges with his disability: He meets a woman on a blind date who can’t see past the wheelchair. He contends with stares and/or overly eager assistance from onlookers. He struggles to hail a taxi on the streets of New York City. “If you’re wondering, I can have sex. I just can’t catch a cab,” he quips. Thank consultant and actor Mitch Longley for the movie’s telling details.

“A lot of the authenticity in the film comes from his contributions,” Brooks says. “He was adamant that we hit the sexuality of it, the whole gamut of human experience that is often overlooked, denied and/or forgotten.” Brooks opened auditions to actors with disabilities as well as able-bodied actors. Actress, model and Paralympic world record holder Aimee Mullins landed the role of Isaac’s former girlfriend. The leading role of Isaac and supporting role of Fiona were ultimately portrayed by Farmiga and Stahl, both able-bodied actors who best fit their respective roles. Brooks had Stahl prepare for his part by using a wheelchair on the punishing sidewalks of Manhattan. “There was an interesting relationship between him and strangers … There’s no pity or misappropriated anger, or any anger,” Brooks says. “I’m really proud of how all of that stereotype is defeated, and you very quickly are just identifying with the character and the person.” That’s why Brooks wants viewers to get past the shoes and the perceived healing powers they represent—the ability of Isaac to suddenly walk once he places them on his feet only to revert back to his disability once they slip off.

ABILITY 43

Vera Farmiga plays Fiona, the intriguing love interest, opposite Nick Stayl, in Quid Pro Quo.

“A guy came to the Sundance screening and missed the beginning where it warns you this all has to do with magic shoes,” Brooks says. “He missed that, and he came in and said, ‘Wow, I really like this because this is a movie depicting a physical disability in an authentic way.’ I was very keen about doing that, but ultimately I lost him…” because the viewer saw the film strictly as portraying physical disability. “I wanted them to identify with the character and not his condition.” “I thought it was essential that everybody in the audience, whether able-bodied or disabled, get beyond the historical barriers that we have with people who are different from us,” Brooks says. Isaac’s detective-like mind leads him further into the Wannabes’ world. His own wheelchair and, yes, even the shoes help him uncover how far members of this subculture will go to satisfy their desires. There are three levels of the Wannabe lifestyle: • Devotees who are sexually attracted to those with a disability. • Pretenders who do not have a disability but live as if they do. • Wannabes who long to have a disability.

It’s the Wannabe world that captures Brooks’ focus. And it’s a world, as he reveals in the film, where Wannabes secretly use crutches, braces, chairs or even breathing tubes to cast themselves as having a disability. The struggle they face lies in dealing with potential public scrutiny, or as one Wannabe in the film suggests, the fact that nobody would understand his desires. Brooks admits he never communicated directly with anyone in the Wannabe world, but his research of the 44

ABILITY

past eight years in Internet chat rooms and secret community websites helped him glean details of the lifestyle. “Some have had personal relationships fall apart because they revealed these desires. They were very tormented on that level.” What is as the root of such desires? Brooks theorizes it is an attempt to fill a natural void. The examples that shine through in his mind are people whose parents were traveling doctors who treated people with disabilities, and perhaps focused too much on their patients and not enough on their families. But nearly a decade of research hasn’t brought Brooks to a solid conclusion on the matter. “I’ve never been able to say definitively, only that there seems to be, I think, a misappropriated sense of significance given to disability, or perhaps an unconscious sense of the concept of being a victim and ‘if I were this way, I would be entitled.’” Brooks says that’s exactly the opposite of what he’s experienced: That, in fact, many people with disabilities do not want to feel entitled to anything, but rather want to earn respect from peers as does anyone else. He feels it’s yet another way Wannabes grasp for a lifestyle they cannot fully comprehend. “I found the humanity in them,” Brooks says of his Wannabe studies. “If I didn’t identify completely with the desire, I understood the sense of isolation.” Other themes percolate through Quid Pro Quo: knowing what it’s like to battle guilt regularly, attempting to define what is “normal” and what is not, figuring out what is reality and what is not. The ending leaves it for you to decide: With magic shoes, does Issac leave behind footprints or wheel marks? IMDB - “Quid Pro Quo” imdb.com/title/tt0414426

ABILITY

n show business, you don’t say “good luck,” you say “break a leg.” But one day, when Lainie Kazan was running along the beach with her dog, while taping a TV show, she literally fell and broke her leg. It still turned out to be pretty good luck: The injury brought attention to another critical medical condition: She had deep vein thrombosis.

Still, over the years, the fates have been kind. She made her Broadway debut in 1961, and later served as an understudy to Barbra Streisand in Funny Girl. She once posed for a Playboy spread, and gained fame for her appearance in a highly memorable Aqua Velvet after shave commercial. She’s traded wits with the funniest guys in the business, from Dean Martin to Adam Sandler, and remains a sought-after quantity in TV and film. Kazan recently chatted with ABILITY’s Chet Cooper and Thomas Chappell MD. Chet Cooper: What’s going on with your career these days? Lainie Kazan: I’m in the Adam Sandler movie, You Don’t Mess With the Zohan. I play his love interest. Other than that, I’m just having fun. CC: I guess I’m the last person who hasn’t seen Zohan; I’ve got to correct that. LK: It’s about this guy who’s in the Mossad (army) in Israel. He’s like a CIA operative and a superman; he also has sex with every woman on the beach. He’s just, like, out there. And his parents are so proud of him because he’s the best soldier and the best CIA agent. But what he really wants to be is a hairdresser. So he leaves the army and Israel to live incognito in New York, while everybody from home is looking for him. He doesn’t have a place to live or anything to eat, and he meets some guy who brings him home for dinner. I play the guy’s mother, and the next thing you know, I’m Zohan’s muse. He uses me as his model, cutting my hair and coming over every once in a while, so I’m sprinkled throughout. It’s a wonderful part. Thomas Chappell: Sounds like it. LK: I’m also singing all over the country. CC: I love your voice. I actually was reminded of that recently when I was playing around on YouTube. Have you seen that Dean Martin video where you two are singing together— LK: Yeah, the one where I play on his lap. CC: Was that rehearsed? LK: Only the music was rehearsed; the rest was ad-libbed. CC: It seemed so real. Lainie Kazan with Zohan co-star Adam Sandler. ABILITY 47

CC: For some reason I didn’t see the rest of the crowd doing that. TC: The rest of the crowd doesn’t look that good. LK: And the rest of the crowd doesn’t need to look that good. That’s her job. CC: Well, it was a pretty stellar crowd. I just felt bad for her, thinking that she has to be on all the time. LK: I was just like that. CC: Yeah? LK: Oh, sure. I wouldn’t go out of the house until I looked like my photographs, and I never looked like my photographs, so it was hard getting out of the house.

Dean Martin, one of the infamous Rat Pack, had his own TV series from the mid ‘60s to the mid ‘70s. As a YouTube video shows, he and guest-star Lainie Kazan were funny together and had loads of chemistry.

CC: Let’s talk about the DVT. How did you first become aware of it?

TC: He had such a quick wit.

LK: It was 73’ or ‘74 and I was running on the beach with my dog. A cameraman was taping it for a television special. But then the dog cut in front of me, and when I tried to avoid him, I tripped on my caftan, breaking my foot.

LK: And he had great affection for me.

CC: How was the dog, by the way?

CC: It seemed so. (laughs)

LK: (laughs) So they put a cast on me, and I went back to work. A few days later, I was scheduled to go on a concert tour across Australia. But after I got home, I noticed a pain in my leg, and my foot started to swell and turn blue and green. I ended up missing the plane, and my band members traveled over without me. We called a doctor, and he came over. I remember he looked like a handyman.

LK: It was, it was.

LK: As a friend. He was very kind to me, and he had the best sense of humor. CC: A lot of younger people don’t even know who Dean Martin is these days. LK: That’s pathetic. A lot of these children like things for maybe five minutes, and then they move on. When I was coming up, if we liked someone, we were fans and we followed them from song to song, and from project to project. CC: That’s the new generation, for you. I was at an event a while back, and Paris Hilton was there. I can’t tell you how many times she got out her make-up kit and checked what she looked like. LK: Listen, I used to be like that. That hasn’t changed. A woman is a woman is a woman. (laughs) Is and always will be.

After I was downed by deep vein thrombosis (DVT), which is when a blood clot develops in the large veins of the legs or the pelvic area, I was on so much medication that performing became a real hazard. But I had to get out there and make a living. It was not a good time for me.

ABILITY

CC: Like Tom? (laughs) LK: Yeah. He came with pliers and he said, “Oh, let’s just loosen this [cast].” He gave me sleeping pills. He said, “Get on the plane, and you’ll never know you arrived.” And that would have been true, because the blood clot probably would have traveled up from my leg to my lungs and I would have died. TC: Just for the record: Symptoms of DVT include leg pain and tenderness in the calf muscles, swelling or a change in color of one leg to purple or blue. If the clot

breaks loose and travels to the lungs, causing a pulmonary embolism (PE), symptoms include chest pain, shortness of breath, rapid pulse or a cough. There may also be a feeling of apprehension, sweating, or fainting. PE can be fatal if not treated immediately. LK: All true. So during the night I started to feel like I had the flu. That’s when I called my primary doctor and told him, “I have a broken foot. I’ve missed my plane and now I’m supposed to travel in the morning. Could you meet me at the airport and give me a flu shot?” He said, “You know, I’m not going to be responsible for your life unless you come over here before you get on the plane.” He recognized my symptoms, which were really quite advanced, because at that time I don’t think anybody spoke of pulmonary embolisms. After he examined me and x-rayed me, he sent me straight to Cedars-Sinai. I was in the hospital for over a month, and I was on blood thinners. I had to have my cast removed because it reduced my circulation. I couldn’t walk. I missed a lot of work. It was a bloody nightmare. I was in and out of a wheelchair for about two years. CC: But after that you were free and clear? LK: Not exactly. Years later, they put me back in the hospital when I had a recurrence of pulmonary embolism about six months into my pregnancy. They told me, “Don’t have your baby, you can’t have your baby.” But I was determined. CC: And the baby’s fine? LK: The baby’s 34. CC: Yeah, but does he know who Dean Martin is? (laughs) LK: What I want to say is that I had a hip replacement a few years ago, and I had to take medication before the surgery, since they couldn’t give me a pain blocker during the operation, because of the DVT. As a result, I was in severe pain. DVT is a very, very serious condition. At that time, it was called phlebitis, if you remember. TC: That means “inflammation in the vein.” LK: Right. I recently particpated in a national campaign to raise awareness and to help educate people about DVT. It’s important to know if you have it or if you’re prone to blood clots. So many people in the U.S. have had this condition, and too many have died from complications related to it. CC: If people know the risks, what more can they do? LK: If they’re going to have a certain kind of surgery, as I said, or if they have a respiratory ailment, or if they have cancer and they’re gonna have chemotherapy, they

Lainie Kazan, with Nia Vardalos, from My Big Fat Greek Wedding, had an unforgetable line in the film: “The men may be the head of the house, but the women are the neck, and they can turn the head anyway they want.”

ABILITY 49

The star-studded cast of You Don’t Mess With the Zohan

should consult their doctor and find out what to do. There is also a website that offers a kit, which will tell them whether or not they are susceptible to this condition.

TC: And current Vice President Dick Cheney had a blood clot recently, too. LK: He did?

CC: Did the drugs you had to take cause depression do you think? LK: I don’t know, but I did take a lot of them. I was on blood thinners, pain medication, sleeping pills… CC: For how long? LK: A couple of years. TC: Have you met or heard of anybody with a similar story who’s had DVT or a pulmonary embolism?

CC: I didn’t know Dan Quayle’s DVT story. But I think of the potential for blood clots a lot when I fly now, so I move my legs a good deal to keep up the circulation. LK: You’ve got to stand up and walk around… There are so many people who don’t know about this. It’s amazing that two million people had this last year. I think that’s stunning! CC: Two million last year? LK: Yeah.

LK: People have come up to me who’ve had PEs or who have DVT. Some of them don’t do anything about it, or they don’t want to admit they have it. TC: NBC’s David Bloom had one; he was in a tank in Iraq with restricted mobility—one of the major risk factors—and he had a pulmonary embolism and died. Now his wife is campaigning to raise awareness as well.

TC: It’s a relatively common phenomenon in hospitalized patients, something we’re constantly attuned to and think about all the time. LK: Don’t they give blood thinners to people as they check in for surgery? TC: Some of them.

CC: I guess this is the same thing that former Vice President Dan Quayle had?

ABILITY

CC: You need some clotting, though, right?

TC: Yeah, you can’t do it too much before the surgery. That’s a little tricky. LK: Oh, right.

TC: Oh, oh, oh! You were going to have an invasive procedure. They didn’t want your blood thinned when they stuck the needle into your back, because that could have caused blood clotting of your spinal column.

TC: It’s a question of how soon after the surgery. Now we need Larry; he’s the other medical editor who’s a vascular surgeon.

CC: A spinal block?

LK: So when do they give you the blood thinners?

CC: Right, to stop the pain.

TC: It depends on what the surgery is, what the person’s risk factors are, all those things figure into the mix. But just as an example, Elizabeth Taylor, I think she had a benign brain tumor a few years ago.

TC: A spinal block requires a lumbar puncture—a needle put into the spine.

TC: Women usually have it to deliver babies.

LK: So because he gave me blood thinners before the surgery, he couldn’t do the block.

CC: How’d you know that? TC: Right. TC: I just know. A brain tumor causes people to have an increased risk of clotting to the blood. So that’s a particular example where a brain surgeon would be real concerned when operating on a patient, because the person’s going to be in bed for a while, so they often thin the blood for a day or two after surgery. LK: Now, that’s interesting, because I had a hip replacement and they couldn’t give me a blood thinner or a (spinal pain) block, because of my history with DVT and PE. As a result, I had more pain.

LK: Because having a PE I am more at risk of having another one. TC: That’s right. You know now that you’re a person who is— LK:—prone to that. TC: You’re not taking aspirin or anything?

ABILITY 51

LK: I take baby aspirin.

LK: I was her understudy on Broadway, and I—

TC: That’s a very common recommendation for people with heart conditions or other reasons to be concerned about blood clots.

CC: I heard you put something in her soup.

CC: So no matter what she does, she’s not gonna be able to get that pain block if she has another hip replacement? TC: It’s up to the anesthesiologist, but I wouldn’t not do it just because she’s been taking baby aspirin, for example. Or they could ask her to stop taking the baby aspirin two weeks before it, do it and then thin her blood after the surgery. I think most surgeons would do it if she really wanted the spinal block. It’s not out of the question. CC: Yeah, I noticed you were walking a little bit slowly, Lainie. LK: The other hip is going a bit. I’m also a little bit tired. (laughs) But I’m great. I work out. I do yoga, I do Pilates.

LK: I did not! (laughs) I would invite her over for dinner, but she never accepted. I played a Ziegfield show girl in the same production she was in, and before I came to rehearsal I was signed to a seven-year movie contract by Ray Stark, who was the president of Seven Arts motion pictures. So I came to rehearsal thinking I was [as big as] Lana Turner. I worked for a year and three months in the show. It wasn’t a success at first. We got very bad reviews in Boston. They got rid of our director, and brought in Jerome Robbins, who was famous and infamous at the same time. He was a real difficult choreographer, but highly respected. He choreographed West Side Story. When they brought him in, he said, “Oh, get rid of that girl”—meaning me—“she’s too attractive to play Fanny Brice.” So they fired me a few times, and they never could find anybody else, so they just kind of kept me there, never gave me a script or anything. CC: You kept showing up?

CC: Keep going, you do karate…

CC: Where do you live?

LK: Finally we opened and it was a huge success, and there I was: Barbra Streisand’s understudy. I was in the show, had a fabulous time, you know, stage-door Johnnys and all that.

LK: In New York and L.A., but mostly in New York.

CC: Wait a minute, what’s a “stage-door Johnny”?

CC: Yeah, you have that...(laughs)

LK: Guys who used to come by and take all us chorus girls out. So anyway, about a year and three months into the show, I got a call that I was going on. Well I called everyone who ever said to me, “If you ever go on, call me.” They all showed up, and so did Barbra. It was a Tuesday night. I had come to the theater, got all dressed, ready to go on, and 10 minutes before the curtain, Barbra walked in and did the show. I was devastated. I climbed the five flights of stairs to my chorus dressing room and went on again as one of the Ziegfield show girls. That night I went home to my apartment, and got a call and they said, “You’d better come to the theater in the morning.”

LK: No karate, but I ride a bike and take care of myself.

LK: We call it tam. Did you ever hear that before? It’s a Yiddish word that means “spice.” (laughs) TC: All those years mountain biking with my friend, who is also Jewish, and he never mentioned that. CC: Are you Jewish and Italian? LK: No, I’m a Spanish Russian Jew. I’ve been so many different things in film, but I’m Sephardim and Russian. CC: We have a woman on the board of directors of our non-profit foundation, and she’s from Israel, and she’s Jewish and Italian. LK: My daughter’s Italian. CC: The woman I’m talking about speaks with a British accent. We can’t quite figure her out. LK: You should meet someone who is Chinese and Jewish. CC: Doubling back: Even if people don’t remember Dean Martin, they should remember Barbra Streisand. Tell us about that story of when you went on for her? 52

ABILITY

CC: You called Barbra. You shouldn’t have called her. LK: That’s right, and the next morning they warned me, “You cannot tell anyone you’re going on because we’re going to lose business.” And I said, “But I have to call my mother.” I made sure that my mother had a duplicate list of phone numbers. So she called everybody on the list. I got rave reviews, and I went on to have my own career. lainiekazan.com vdf.com

Karl and Kendra met online through one of several disability dating sites; they got engaged months later.

few months back, I was charged with writing about dating websites. Not just the standard variety, but those specifically created for people with disabilities. As one who considers dating to be personal, and who advocates full-inclusion, the fact that relationships were being targeted to such a select, segregated community was difficult for me to swallow. But I’ve come around. Dating4Disabled contacted ABILITY not only about the mission served through its website, but also the increasing popularity among a global community of disabled singles looking for anything from friends to significant others. Free to users and completely anonymous, Dating4Disabled may be exactly what some of you are looking for. Operating out of Israel, D4D serves more than 9,000 registered users from around the world—95 percent of whom are disabled—and is part of a larger organization known as Inter-date, which was founded in 2006. The site is managed and maintained by volunteer Merryl Kaplan, a former New Yorker and human resource manager at Mt. Sinai Hospital. She serves as a “matchmaker” to experienced daters, as well as those taking their first steps into the romantic arena. Though Kaplan does not have a disability, she gets valuable advice from her cousin, who has cerebral palsy, and generously shares her insights into the challenges faced by people with disabilities in their everyday lives. “We provide a community where disabled people can come and know that the disability card has already been played,” says Kaplan. Special Singles Online is a similar site with an estimated 6,000 registered users, 99 percent of whom have

ABILITY

disabilities. Tracy Saks, the New York-based creator of the site has MS, and said that she founded her company in 2003, after realizing that no resources for dating or social partnerships were available in the disability community. “There was a social need,” she said. “People with disabilities deserve a choice just like everyone else, and it’s a relief to have a site where we all know that we have similar life experiences.” Like Dating4Disabled, Special Singles Online’s services expand beyond U.S. borders, including registrants from England, Australia, Russia and Egypt. The fee is $12/month; $48 for a lifetime membership for those on SSI or SSDI; and $82 for a standard lifetime membership. “We charge for our services and supports, but we also take into consideration that people with disabilities may have financial limitations,” explained Saks. “Our main goal is to help people find love. We all deserve it in life. Sometimes we just need a little help to find it, so it ends up totally being worth it.” People with all kinds of disabilities are registered users of Special Singles Online. “We adapt to people’s needs as best we can when we are asked,” Saks said. “It’s important that people are open about their needs so that we can accommodate them.” The mission of Mingle Café’s website is to empower a group of people with the tools to be able to interact with others locally or around the world, to find friendship and support, to voice thoughts and feelings, and, if one is lucky, to find love with the right person. “The site offers profiles of men and women, personal blogs, discussion forums, instant messaging and a video service. Profile information includes ethnicity, religion, age, location, desires, educational background, hobbies,

disabilities have the power to add a little romance, or at the very least some friendship to their lives. This is important because not everyone feels comfortable disclosing information about a disability on such conventional sites as match.com or eharmony, where a disability would have to be noted as a random fact in a category marked “Other.” More likely, many people post their information on these sites without refrence to their disability at all.

Matchmaker Meryl Kaplan founded the popular Dating4Disabled website in ‘06.

personality traits and life challenges. The members’ disabilities or life challenges range from non-mobility issues such as phobias, chronic pain, and depression, to mobility challenges such as cerebral palsy, spina bifida, multiple sclerosis, paralysis and amputations. “Our hope,” according to the Mingle Cafe website, “is to facilitate a worldwide community for people to come together in friendship and in love.” “EmpathyPlus is a totally inclusive on-line social community. Our goal is to address unique issues of isolation and social discrimination experienced by people with disabilities, special needs and life challenges. “It’s a gathering place where men and women with various disabilities can experience personal, social, romantic growth in a supportive and empathic zone. It’s a great way to meet new people, make friends, flirt, date, or maybe even find a life partner in an atmosphere filled with caring and openness.” The founders pledge to generate new pages on the site based on visitors’ responses to questions about their particular needs and desires. The site welcomes people with various disabilities and life challenges, and anyone ever touched by them. “Disabled Dating World is part of the Disabled World news, a website that focuses on providing information for people with disabilities. This is a free disability social dating community created to provide dating and friendship services to those of us with disabilities worldwide,” the site says. “Finding that special partner for love, romance, or just to [connect as pen pals for] friendship, has never been easier. We offer you all the tools you need for free as a member of our disability dating group.” Another site that you might be of interest is Disabled Passions, which also offers access to free online dating and social networking services. With all these options, it’s evident that people with

“Dive right in!” Kaplan recommends. “People start off testing these sites by just reading blogs and forums, and where it goes from there can be completely up to you. It’s all about personal choice. Reading the site testimonials in which so many people have found love and friendship is bound to convince you, so prove it to yourself.” Please note: Socializing with someone you meet online as a friend or possible mate must be explored at your own pace and at your own risk. When it comes to sharing personal information or choosing to meet up, taking the right precautions can make the experience well worth it. Good luck! by Betsy Valnes Betsy Valnes, a young woman with Traumatic Brain Injury and anomia, is an active member of the disability movement in the U.S. and abroad. She currently serves as the executive director of the National Youth Leadership Network, a non-profit organization run by and for young people with disabilities.

Dating4Disabled.com specialsinglesonline.com MingleCafe.com EmpathyPlus.com disabled-world.com disabledcupid.com datedisabled.com prescription4love.com lovebyrd.com whispers4u.com disabled-dating.com enableromance.com

HOW KARL MET KENDRA Karl Schraml, 37 Photographer/Chef Central Washington State Nerve Damage Kendra Sanders, 25 Systems Analyst for a major bank Southern California Sacral Agenesis ABILITY: How did you learn about Dating4Disabled.com? Kendra: I found out about it by doing a Google search for online communities that were centered around people with disabilities. I was looking for some place to find friends who understood where I was coming from in my life. ABILITY 55

Karl: I received an e-mail about it through another dating website that I was a member of.

ABILITY: What did you appreciate the most about Dating4Disabled.com?

ABILITY: What prompted you to use a dating site specifically for people with disabilities?

Kendra: I loved that people were accepting of other people and willing to talk about things other than sex. People were genuine and friendly. They were also compassionate towards other members, and often they knew the struggles that you were facing. In short, I felt welcomed from the start and I felt as if I didn’t have to put on that “fake” face.

Kendra: I chose to use a dating site of this nature because I felt that people would be more open and willing to look beyond the outer shell to see the real person inside. I thought it would give me more of a chance to be myself and talk to others who could relate to my issues. Karl: I used the site because I thought I could meet someone who understood some of the issues and new challenges I had been facing the last couple of years.

Karl: I enjoyed meeting nice people - people who weren’t superficial and shallow. The people actually had something to say and talk about, rather than just wanting to meet-up for a “good time.” ABILITY: Who would you recommend use this site?

ABILITY: Did you post personal information on other popular dating sites (e.g., Match.com, etc.)? Kendra: Yes, I posted personal information on a great deal of other sites. I was looking for “Mr. Right.” However, I was shooting zero until I came across Karl on Dating4Disabled. The other sites just seemed to be filled with people looking for that one night good time or a 5’10” blonde supermodel. Karl: Yes, I had my personal information on at least five other websites. I had met a lot of people, but nobody that I felt a connection with or who understood where I was coming from. Most people at other sites seemed very superficial. ABILITY: How did you decide to meet one another in person? Kendra: I spent most of my nights talking to Karl either online or on the phone. I was very shy at first, but he continued to talk to me and drag me out of my bubble. I knew he was genuine when he never asked me any sexual questions. Most guys online jump to that in a matter of two sentences. He could hold a great conversation and made me laugh. I really felt a connection with him, even though we had yet to meet in person. One day, I told him I was coming up to Washington, and we agreed to meet in Seattle. The rest is history! Karl: I enjoyed talking to Kendra, and she made me laugh. We’d spend hours online or on the phone, enjoying each other’s conversation. I knew she was very special. ABILITY: What are your plans now with your relationship? Kendra & Karl: To get married in Summer 2008 in a ceremony in Bellevue, WA, with all of our family and friends by our sides. We hope to have many happy years together and would like to have children in the near future. 56

ABILITY

Kendra: I would recommend people that have disabilities use the site, even if they think they might not belong on it. At first, I was apprehensive about joining a site specifically for people with disabilities. I didn’t want to put my disability on display. However, it changed my life and I am so glad to have found a community filled with great people. Karl: I would recommend it to anyone who has an open mind and can look past the superficial. They might find the love of their life if they let the barriers down. ABILITY: What cautions would you share for those wishing to post information? Karl & Kendra: We both agree that you shouldn’t post personal information (i.e., phone number, address, email, etc.) on the website. Additionally, when you meet someone in person, be sure to be smart about it. Meet in a well-lighted public place, and let someone know where you are going. ABILITY: What words of advice would you share with those thinking of posting info, but perhaps nervous about doing so? Kendra: At first I was nervous about posting information about myself and my disability. I had always just been “normal” in my eyes and felt that people would look at me differently. But I eventually caved in and created my profile. I think people should just realize that it could change their lives and give them the opportunity to meet awesome people. Karl: Just do it! Don’t be afraid to open up and let your personality shine through. People naturally look at things on the surface, but if you write your profile well and show your personality, people will take the time to get to know you. And they will see how great you are, so be yourself and be proud! —B.V.

he Second Look Program at the Rehabilitation Institute of Chicago (RIC) offers people with all levels of spinal cord injury, including those who rely on ventilators, a care-management update to identify the latest and best therapies available to help them embrace the best life possible. No matter how old your injury, Second Look helps you obtain the latest developments in rehabilitation. ABILITY’s medical editor Thomas Chappell, MD, spoke with David Chen, MD, the physiatrist who runs RIC, about his program. Thomas Chappell, MD: How does Second Look work? David Chen, MD: It’s a comprehensive multidisciplinary program with at least two goals. One is to address the fact that, due to improved care and better maintenance, individuals with spinal cord injury are living longer. As a result, they develop new problems that we need to address. Also, there are treatments available for some individuals who were injured 10 or 15 years ago that were not available at that time. We want to help them take advantage of the improved technology and techniques. TC: How did the idea come to you? DC: After 16 years in practice, I was encountering people who had lived 10, 15 and 25 years with a disability. They came to me with reports of different issues than the ones we’d been used to dealing with in the earlier phases of a disability. Before the Second Look program,

I would say, “Well, maybe we need to have you see the physical therapist, or the occupational therapist to address these issues.” But I was starting to see the same physical complications so regularly that I said, “You know, maybe we should have a regular program for these people.” Now we see these individuals on a periodic basis, maybe once a year or every two years. We spend two or three hours with them, where they get medical review and follow-up, a comprehensive examination, and are evaluated by physical, occupational and possibly even speech therapists. We used to refer them to various therapists, but now we’ve become a “one-stop shop.” Some individuals are doing just fine. For others, further outpatient or inpatient therapies may help them head off issues they could encounter as they grow older. TC: Are you accumulating data to demonstrate the effectiveness of the program? DC: We are. As part of our obligation to the Model Systems Program, we collect outcome and follow-up data. TC: So you have an intake assessment, determine what interventions the patient might benefit from, and later assess them again after some time to see if they’ve benefited in any way? DC: Yes, but as we continue to track these individuals, say six months down the line. It’s more important to ask, ABILITY 57

“Have they been able to maintain the functional gains they’ve achieved? Have they encountered any other issues related to medical complications or hospitalization?” TC: I take it there are no issues with billing the thirdparty payers for your services? DC: Right, and interestingly, with a number of payers, they’ve been surprisingly forward-thinking. They see it as an investment in these individuals, an opportunity to head off potential complications. In the long run, this may actually save money in reduced payouts. TC: How do you determine if a patient can benefit from further therapy? How does a “second look” differ from the initial evaluation a patient gets just after their injury, for example? DC: Well, you know, a “second look” is not greatly different from the patient’s very first assessment. The main difference is that it is occurring at a different phase in the patient’s disability, when new problems or issues may arise. Ordinarily after each one of the different therapists has assessed the individual and discussed their situation, then the various therapists and I get together and discuss the available options.

DC: There are a couple of individuals who are low-level quadriplegics, and who are very independent. They use manual wheelchairs because that works well for them. The chairs have the advantage of being more accessible and easier to load and unload from a vehicle, things like that. But many of these people begin to experience difficulties with their shoulders as time goes on. Some were performing transfers (from bed to chair, or chair to car, for example), and propelling their wheelchairs in a fashion that we now know is incorrect.

help from anybody, but I had to take help. I couldn’t dress myself. I couldn’t feed myself. Eating took so much energy. I couldn’t do anything for myself.

TC: What are you finding? What conditions most commonly pop up that meet criteria for further therapy? DC: The most common things we are beginning to see are musculo-skeletal issues—the wear and tear that comes from having lived for 15, 20, 25 years with a severe disability, such as paraplegia. It may be because of the way that they are accommodated for their disability. A lot of what we do is focus on stress-relieving accommodations that a person can incorporate into day-to-day activities. It’s a matter of teaching them new techniques or different ways of using the equipment they have, or possibly getting them different equipment. Sometimes new technologies or improved equipment is available. But it’s really working with the individual situation, and determining whether a change ABILITY

TC: Can you give me an example where you made a significant impact on somebody’s quality of life?

“ I didn’t want

For example, we may determine that an individual might benefit from a single-discipline therapy, such as physical therapy alone, or maybe just occupational therapy. If we really feel that the individual might benefit from readmission to our inpatient unit, we can try that. There are individuals who really don’t want to come back into the hospital, and if we can achieve what they want on an outpatient basis, then we can go that route.

may help them now, as well as in the future.

”

They were doing what they had been taught 15 or 20 years ago. Our therapists incorporated some changes into their transfer and mobility activities that put less strain on their shoulders. The availability of new types of power-assisted wheels—not necessarily power wheelchairs— allows them to maintain independence with a lightweight chair that is still easily taken in and out of a car. TC: Do you find that patients require longer or shorter periods of rehabilitation with Second Look?

DC: Usually shorter because our therapists are goal-focused, and an individual with a long-standing disability knows the specific issues that they want to work on. For those who come in as inpatients, because they are with us for shorter periods of time, we communicate with them more frequently in order to help move them along. TC: How about degenerative diseases such as multiple sclerosis? It seems those conditions might be opportunities for “second,” “third,” and “fourth” looks. Are you checking into those areas as well? DC: We have, from time to time, seen individuals with disabilities due to things other than spinal cord injury, such as non-traumatic spinal disorders, including spina bifida. We’ve seen a few post-polio patients. We’ve had inquiries from our MS practitioners, although I can’t honestly recall anyone from there that we’ve enrolled into the Second Look program. Some stroke patients may benefit from a second look, especially the younger ones whose life expectancy may be several decades.

Dr. Chappell contacted one of Dr. Chen’s patients, a young man named Jason in Decatur, IL, to hear how Second Look improved his quality of life. TC: Tell me the nature of your injury? J: I used to race motocross, and I had an accident on a dirt bike, actually, on a triple jump. I broke my neck, C6, C7 vertebrae, incomplete. And I’ve got a lot of feelings and sensations in my legs and a little bit of movement in one of my legs. I don’t exactly know at what point I got that back, but when I first got hurt, I didn’t have that movement. I didn’t have any sensation or anything like that, but it’s coming back.

or my hand completely back on my right side, all my fingers and everything. They’re not real, real strong, but I got them totally back, I got everything back on my right side. On my left side, though, I still can’t move any of my fingers. TC: Are you right-handed? J: Left-handed, so I had to relearn everything using my right hand. TC: How much time passed between your initial rehabilitation and your Second Look? J: Maybe two-and-a-half years.

TC: When was the injury? J: May 2002 TC: Right afterwards, did you have some feeling and no movement? Is that why they called it incomplete? Or did you have a little bit of movement? J: I didn’t have any movement at all. They always called it incomplete. TC: Incomplete means you had something, so you had some sensation? A lot of people, as you know, have complete injuries and they can’t feel or move anything below the level of the injury.

TC: What made you interested in what they had to offer? J: They told me that they concentrate on certain things like dressing oneself, which I never paid much attention to the first time around, because I was ready to go home. I learned how to transfer from the ground to my chair. That was a big thing, because I’d fall a lot. So I needed to know how to do that. I fell in the shower a couple days ago, and I had to get myself back up, things like that. I’m always dealing with some kind of emergency. TC: So you were able to get out of your bed into your chair the first time, but not able to get off the floor?

J: I have some sensation. TC: What do you remember about your first time in rehab? J: I just wanted to get the heck out of there. There were so many meds it was unreal. One day I was all right and the next I was sick. I kept getting pneumonia, which was my biggest problem. Once I got all that coughed out and they finally took the tracheotomy tube out, I got better fast. TC: How long were you in rehab the first time? J: From the end of May until September or October. I was in there forever. TC: When you got out, how were things at home? J: Horrible! That’s what was the worst. I didn’t want help from anybody, but I had to take help. I couldn’t dress myself. I couldn’t feed myself. Eating took so much energy. I couldn’t do anything for myself. TC: Can you bend your arms? J: Now I can. My arms are fine. I got my triceps back. I can’t feel them completely. My left side’s a little worse than my right. I got my hands completely back,

J: I could hardly do that when I first got home. I couldn’t even transfer. In time, I was able to do it with a transfer board. I kept practicing. But when I left there the first time, I could hardly transfer on my own. TC: What were your primary goals when you went for your Second Look? J: To dress myself, to get up off the floor and into my chair, and to use some adaptive equipment. TC: What were some of the ideas that the therapists at Second Look shared with you that you found particularly helpful? J: How to use my tools. I’ve got mills, lathes and other equipment. I’m a journeyman tool and die maker, so I had most of that stuff before I got hurt. I talked to them about prosthetics. TC: So you’re able to do most things that you did before? J: I just bought a bench-top lathe and a bench-top mill, so I’m definitely going to start doing more. I just got that stuff here a couple months ago. I haven’t even plugged them in yet. But that’s something I really want to do, start making wheelchair parts, because often you’ve got to order them and then wait. Since I’ve got ABILITY 59

the materials, I can whip them up rather than waiting. TC: So as a journeyman tool and die maker, you had a job there where you live, at a plant?

had me on so many narcotics. I was insanely tired, and finally I told myself, I’ve got to get off this stuff, because I was sleeping all the time.

J: Yeah, I design tools now, actually.

TC: It makes you wonder if we shouldn’t delay the initial rehabilitation even further.

TC: You have everything you need at home?

J: I know.

J: I do. Recently, I’ve made (replacement) aluminum parts for my electric chair, which I broke. There’s a little piece that holds the footplate up, and there’s a little rod that goes through it that has gears. I had to make the part that the rod goes through.

TC: Do you know how it was paid for?

TC: What kinds of tool and die work have you been doing? J: I still design tool and dies for the same company that I worked for before I got hurt. TC: So you go to and from work each day? Get yourself in the car, drive and get in your wheelchair and go into the building, just like any other employee?

J: I actually had Medicaid. They took care of it. TC: Medicaid was willing to pay for it when you went back for your reevaluation? J: Amazingly. I figured it was going to be hard. TC: To some extent, it’s considered to be a new treatment, a new idea, and Medicaid really is resistant to pay those. Did you go into it with high expectations, and if so, were they met?

TC: Except that you’re not doing the same tool and die work as you did before, because that requires more standing around the milling machines?

J: Actually, I was amazed that we were able to get done what I wanted to get done. I just ran out of time, basically. If I had time, I’d just keep on doing it six months out of the year if I could, or every six months or whatever, if I could. When I don’t do that kind of intense exercise and stuff like that, I go downhill a little bit.

J: Yeah, exactly. It involves more standing.

TC: Are you not able to do a lot of it on your own?

TC: What about a lower bench, having those devices down lower so you could do some of the same work that you did before?

J: Transferring from the ground is the thing. I don’t get to do that unless I fall.

J: Yeah.

J: That’s the main reason why I got those bench-top tools. I can’t wait to use them.

TC: And then you have to do it. What about other forms of exercise? I realize your arms are getting a pretty good workout, since you don’t have your legs. Do you do anything beyond that?

TC: What about them lowering your work station? J: They probably would, but I kind of like the idea of designing it myself, actually. TC: Did you get a lot of benefit from going back for a “second look”? J: I think so. The way I feel about it is, it’s mostly on me. They know what they’re doing there, but if you don’t have the drive to do it, it’s not going to happen for you. The main thing is having somebody there the whole time you’re trying to do the crazy stuff, like transferring from the ground to the floor or ground to the chair. That’s a lot of it. TC: So what you’re saying is, you weren’t up for it that first time around? J: That was a lot of it. I was just really messed up. They 60

ABILITY

J: I use a glider for exercise, and I have braces from the Jaipur Foot Organization, along with parallel bars that we built out of a water line anchored to the concrete out in my garage. TC: You get up out of your chair and into your braces and hold yourself up on the parallel bars? J: Yeah, and it works. I do that on my own. I went to therapy here in Decatur to learn how to do it. Once I did it a couple times, I knew I could do it here. Actually, I feel safer here than I feel there. TC: Would you recommend Second Look to others? J: Definitely. But you’ve got to want to do it, that’s the thing. ric.org

ABILITY 61

ABILITY

ACROSS 1. Blind singer who sang “Brown eyed girl”, first name 3. Blind country singer, Ronnie 8. Mark of a wound now healed 10. President's wife who introduced “Just say no to drugs” 12. 1st deaf Miss America, first name 13. See 39 across 14. __ Man (comic book character) 15. Sea creature 16. “To __, with Love” Sidney Poitier movie anti-racism 17. Christopher Reeve's wife who raised money for people with spinal cord injury 20. Blown away 22. Zimbabwe capital 24. Degree 26. It transcends all borders 27. With correct rhythm (2 words) 30. Often run for charity 31. __ the people 32. Opposed to 33. She supports a charity with her husband David, that helps children who are sick or disabled 34. Top actress who is a goodwill ambassador for the UN and contributes to numerous charities, first name 35. Game in which blind people can hit the ball (goes with 24 down) 37. Opposite of the internet's virtual reality (abbr.) 38. Comedian who brought hope to many! 39. Country singer who overcame a life-threatening liver disease (goes with 13 across) 41. See 59 across 43. President who battled with depression and won 44. Character in Asimov's “Foundation Series” 45. TV show honored for its accurate portrayal of a character with a disability: “___ my children” 47. Hero of the Disability Rights movement (goes with 57 across) 50. Accident victim and charity campaigner for the UN, Heather ____ 53. What Rosa Parks would not give up 54. Reno locale 55. Each, for short 56. That is

57. See 47 across 58. Well-known news anchor and disability rights activist, Walker 59. Someone who sets a good example (goes w/ 41 across) DOWN 1. Blind poet who wrote “Paradise Lost”, first name 2. Ocean 3. Legally blind Olympic runner, Runyan 4. Infrared 5. Top opera singer who was blind, Bocelli 6. Protection 7. The Love Guru 8. Blind jazz pianist, George 9. B follower 11. Windy city, for short 17. Truth alternative 18. Comedian suffered broken neck - recovered, Metrano 19. Symbol for sodium 21. Me? 22. Paralysed professor who gives high level lectures on the future of exploration of the universe 23. Come in 24. See 35 across 25. Dull continuous pain 28. Arizona Cardinals NFL player who gave his life in the service of his country 29. One of the first computers built that was controlled by the operator's thoughts (2 words) 30. “____cop” Paul Verhoeven film 32. Common two-letter Scrabble word 34. There was much about nothing in Shakespeare 36. Everyone wants a piece of it 38. Make someone else responsible for what happened 40. Scrooge 42. Either's partner 44. Type of part 46. “Big Fat ___” 48. George Washington's dream 49. Tit for __ 51. Little, slang 52. Visit 54. Near, abbr. answers on page 65

ABILITY 63

THE LEGAL SIDE OF CANCER

hen people hear the words “you have cancer,” they quickly become overwhelmed. People think about their health, their family, their mortality. What they don’t think about is the legal labyrinth they may face ahead.

The Cancer Legal Resource Center (CLRC), a joint program of the Disability Rights Legal Center and Loyola Law School, was established in 1997 as a direct response to the frequency of legal problems encountered by many cancer patients in the wake of their diagnosis, and the unavailability of accessible and affordable legal resources that would help them to survive. There are nearly 10 million cancer survivors in the United States, according to the Centers for Disease Control. Many of them are unaware that they have rights. They also don’t know that resources exist to aid them through the maze of legal and insurance systems. While it should not take legal resources to access health care, understand insurance options or preserve one’s job, it frequently does. When a person can tap into all this information, the quality of outcomes for patient survivorship improves. People with cancer face employment-related legal issues such as: • working with their employer on job accommodations while they go through treatment • receiving negative employment evaluations after disclosing their medical condition • being terminated from their jobs after disclosing their medical condition • returning to the work force wondering whether they should disclose their medical condition to a potential employer Between 1992 and 2007, more than 6,000 people with cancer have registered disability-related complaints with the Equal Employment Opportunity Commission (EEOC) and had their cases resolved. According to the EEOC, 40 percent of people with a cancer diagnosis are working. It is not only important for those employees to understand their employment rights, but it is also important for their employers to understand them. The Americans with Disabilities Act (ADA) is a federal law that prohibits discrimination in all phases of employment. An employee with a disability is protected during the application process, testing, hiring, medical exams, promotions, layoffs, compensation, benefits and leave time. The ADA applies to private employers with 15 or more employees. It also applies to employment agencies, labor organizations and local and county governments. The ADA provides protection to a “qualified individual with a disability,” meaning the individual must be both qualified for the position and have a disability. “Qualified individual” also means the employee must be able to perform the essential functions of the job with or without a reasonable accommodation. If needed, the employee can request a reasonable accommodation from the employer, and engage in dialogue to determine what that reasonable accommodation might be. If the employee is deemed qualified, the employer must provide the accommodation, as long as it does not cause an undue hardship on the employer. If the employee does not need a reasonable accommodation, then the employee may choose not to disclose his/her diagnosis. People are not required to disclose their medical condition to their employer. However, if an employer does not know of an employee’s diagnosis, then the employee will not be entitled to protection under the ADA. Secondly, in order to receive ADA protections, an individual must also have a disability. Under the ADA, an individual with a disability is an individual with a physical or mental impairment that substantially limits a major life activity. This might include caring for oneself, walking, talking, seeing, breathing or working. A person may also have a disability if she has a record of impairment or is regarded as having an impairment. 64

ABILITY

In determining whether an impairment is substantially limiting, it must be looked at in its corrected or mitigated state. Therefore, one must look at the employeeâ&#x20AC;&#x2122;s present condition, where the employee may be in his or her treatment program, medications that control the personâ&#x20AC;&#x2122;s impairment and any side effects of treatment. A person with cancer may not be considered to have a disability under the ADA, if they cannot show a substantial impact on a major life activity. However, people may be protected under one of the other two prongs provisions of the ADA, namely that they have a history of an impairment or are being regarded as having an impairment. There are also state laws that may provide additional protections for people with cancer. Cancer is a life-altering experience. At the CLRC, we can explain the laws in depth, help a person explore options and provide materials, referrals or resources that may be needed.

by Joanna Morales, Esq. Morales is director of the Cancer Legal Resource Center (866) 843-257 CancerLegalResourceCenter.org disabilityrightslegalcenter.org

ABILITY 65

E v e n t s

ABILITY

C o n f e r e n c e s

E v e n t s

C o n f e r e n c e s

ABILITY 67

E v e n t s

ABILITY

C o n f e r e n c e s

E v e n t s

C o n f e r e n c e s

ABILITY 69

E v e n t s

ABILITY

C o n f e r e n c e s

E v e n t s

C o n f e r e n c e s

ABILITY 71

ABILITY

ABILITY 75

ABILITY