ABILITY Magazine - Virginia Madsen Issue by ABILITY Magazine

VOLUME 2010

VIRGINIA MADSEN

FEB/MARCH

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2010 VIRGINIA MADSEN FEB/MAR MAGAZINE

ABILITY

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M ANAGING E DITOR Gillian Friedman, MD

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

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

E DITORS

HUMOR — Livin’ on a Prayer

HARKIN — A Step Toward Health Reform

Extremity Games

H EALTH E DITORS

VSA — A Gallery of Talent

RUDY GARCIA-TOLSON — I Am Ironman

ASHLEY’S COLUMN — Maintaining My Edge

BAD BOYS — EEOC Tackles Job Discrimination

ASSISTIVE TECHNOLOGY — Suzanne Robitaille

THE EYES HAVE IT — A Sneak Peek at Blindness

JOEY PANTS — No Kidding... Him Too!

MARK GOFFENEY — There’s No Business Like Toe Business

Scott Johnson Guy Uesugi

HAITI — Rebuilding an Accessible Future

P HOTOGRAPHY

MICHAEL ROMAN — Faster Than the Speed of Pain

ENDOCRINE DISRUPTORS — The Dirt on Pollution

MADSEN WOMEN — Two Women Like That

JOSH SUNDQUIST — A Man in Uniform

POST SURGERY GUIDE — A Patient Doctor

CROSSWORD PUZZLE — EVENTS AND CONFERENCES

Larry Goldstein, MD Natalia Ryndin, MD

Paralympic Games Beijing

Jamie and Mady p. 54

C ONTRIBUTING W RITERS

Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Dana Nelson Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes Pantoliano p. 26

W EB E DITOR Joy Cortes

Music Within

G RAPHIC A RT / I LLUSTRATION

VSA Arts p. 10

Nancy Villere— CrushPhotoStudios.com Madsens - Ryu Kodama Cover: by Eddie Mills

T RANSCRIPTIONIST Sandy Grabowski ABILITY’s Crossword Puzzle

Elaine Madsen, Eartha Kitt and Virginia Madsen p. 44

Liz Angeles Diane Chappell Dahvi Fischer Renne Gardner Sonnie Gutierrez Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Liz Angeles Andrew Spielberg Goffeney Rocks p. 34

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

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NON-PROFITS Ashley Fiolek p. 15

ABILITY Awareness/Fuller Center Habitat for Humanity

PUBLISHER

Chet Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2010 Virginia Madsen Feb/Mar Printed in U.S.A.

The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilitybuild.org info@abilityawareness.org abilityawareness.org

don’t know if anyone’s ever done this, but last Sunday I ripped off my shirt, pounded my chest and yelled out, “Let’s all get naked and party!” And everyone in church looked at me like I was nuts. That’s a joke, folks. (Seriously, God, that’s a joke.) The last thing I would ever do is defile the house of the Lord. I already have enough strikes against me as I continue my push for a good seat in the afterlife.

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Most jokes have an element of truth, however, and it is true that I went to church on Sunday. I try to make it to Mass once a week. (I would like to tell you it’s because I’m such a good person, but if I did, I would just be adding the sin of lying to my confession next week.) Some might think, after learning of my rigorous Catholic upbringing, that I’d be turned off by church by now. Such isn’t the case. In fact, I like it. I used to be

the kid pretending to be asleep on Sunday morning, just hoping my parents were too hung over to drag the family into the pews. All too often, my parents would grab us kids away from the television, kicking and screaming, to bring us to the House of the Lord. What was wrong with our house? We had cartoons on! But as I got older, I realized Shaggy and Scooby Doo aren’t the ones who would get me into heaven. Church is somewhat like exercise; you have to fight human laziness to get yourself to go, but afterward—just as after a workout—you feel good. Maybe the constant sitting, standing and kneeling helps sweat out our toxic sins. Church is also a great place to put us humans in our place. I don’t trust people and I don’t think God does either—hence, the Ten Commandments. For one hour a week I am reminded that there is someone greater than me. It’s not that I think I’m great, but I do tend to focus on myself quite a bit. Let’s face it, I’m not praying for my neighbor’s bills to get paid. I’m worried about me! My narcissism is a big part of why I attend church. It gives me a chance to stop thinking about little ol’ me and look at the bigger picture—to set my selfish desires aside and realize that all “this” isn’t just about me. Church also helps put life into perspective. It’s there that I learn about all the biblical characters who thought that their way was better than God’s way, only to find out that God knows a little more than anybody. And whatever you do, don’t piss Him off (i.e., that Great Flood thing). Church (or, for the Jewish, Temple) gives me some quiet time with God. I get to confront Him about the things that happened to me during the week. God, why did I spill bleach on my new jeans? Are these chest pains I’m feeling normal? Why didn’t my car start Wednesday? Sometimes I get an answer. “Oh, the mechanic’s kid’s in the hospital and he needs money.” Well, for what I paid him, the punk must’ve needed a liver transplant. Another good thing about going to Mass is that I get fed a little something while I pray. A small wafer really hits the spot. The best thing about it, though, is that it symbolizes the body of Christ—so after I eat it I have the strength of six elephants plus two giraffes. It may also contain fiber, which is an added health benefit. Church is typically that place where people go when they need something from the Almighty, not when they want to thank the Lord for what they have. I guess we feel God hears better in there. Either that, or we figure He might be more willing to help us if He sees we’re making some kind of effort for ourselves. I’ve noticed that when things are good in our lives, it’s rare that God sees us in church. In God’s eyes, we’re pretty much

what-have-you-done-for-me-lately type of people. A great reason I go to church is that I need to be reminded of things. I seem to conveniently forget not to get angry, lie, worry and covet. It slips my mind that we are supposed to forgive and love one another. Boy, what a pain that is. Each week the priest is up on the altar reminding us of all these little, important things that I just couldn’t squeeze in. As he talks, I say to myself, “Oh yeah, that’s right, I’m not supposed to look at a girl and think that,” or “Maybe I should’ve pulled that guy out of the burning car.” It’s tough having to confront what a scumbag I’ve been, but as with most anything else, I won’t do something I’m not reminded to do. Yes, I know, nobody wants to be told how to act or behave, but we might actually want to become a better people, however painful that might be. We all talk about needing to get away for a vacation, a massage, or simply a little “me” time. But, for whatever reason, we never lump church into the doing-somethingfor-me category. We never think of it as a healthy getaway. In many minds it’s a burden, something we’re supposed to do. But remember, kids, when life is getting you down, you can always escape to Godville. And when you’re feeling blue and worldly burdens are taking their toll, you can always go into His house and He will put you at ease by saying something like, “Don’t worry, my child, you’ll be dead soon.” Every week I leave God’s sanctuary with a big smile on my face and feeling good, with a renewed strength to take on the next week’s problems. Say what you want about church, but I’ll guarantee you one little visit will make you feel better about yourself. So instead of dropping 20 bucks on some romantic comedy movie with a lame actress, drop 20 into the collection basket. Because God will reward you and Jennifer Aniston won’t. And the best part is, bill collectors can’t get you in there. Most of all, church reinforces wisdom. Do unto others, don’t sleep around, quit getting drunk, and forgive that lousy spouse—all tidbits that lead to a better life. Because it’s a dogma-eat-dogma world out there, folks. Sometimes life can really suck, and often we are all given various trials to overcome. If a little church time can help us deal with our dilemmas, then why not go enjoy some quiet time with God? He’s a good therapist. Not to mention, the big guy’s free. And when everyone else is walking around stressed out, pissed off and full of that postal rage, maybe you’ll lovingly give them a tip on that little secret getaway that magically takes away your troubles for an hour and strengthens you for a week. The Holy Disneyland. I’m telling you, there’s just something about church that lets you know everything is going to be okay. It’s…heavenly. “Ham on a Roll”

by Jeff Charlebois

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Choice Act a reality, through the Community First Choice option. The bill offers states a significant amount of additional federal funding if those states agree to provide personal care services to all Medicaid-eligble people with an institutional level of need. This is a huge change from our current system, in which personal care services may or may not be available depending on the state in which a person lives, how long he has been waiting and whether his disability meets the criteria of the current waiver programs that pay for personal care services in many states.

HEALTH REFORM MISSION STILL CRITICAL The Presidentâ&#x20AC;&#x2122;s directive for health reform in his State of the Union address was clear: do not walk away. I am glad that he reaffirmed his commitment to enacting strong and comprehensive health reform this year and delivered a message the country urgently needed to hear. For individuals with disabilities, it is an especially important message. In December, when the Senate passed the Patient Protection and Affordable Choices Act, we were on the verge of major reforms to longterm care programs that would give people with disabilities greater opportunities to remain in their homes and communities. As readers of ABILITY Magazine know, I have fought hard for many years to pass the Community Choice Act. Ten years ago, in the Olmstead decision, the United States Supreme Court held that the American Disabilities Act guarantees individuals with disabilities the right to live in the most integrated settings possible. Yet state Medicaid programs, which by law must provide care in nursing homes to eligible individuals with disabilities, are not required to pay for the same individual to receive that care in his or her own home. The Community Choice Act would change Medicaid law to make clear that all individuals with a disability who are eligible for nursing home care are also eligible for personal, in-home care services. For the first time, the health reform bill that passed the Senate on Christmas Eve begins to make the Community 8

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While this program is critical for people with the most significant disabilities and for those already receiving Medicaid, I am also proud to have played a role in including in the health reform bill the CLASS Act, a new voluntary, long-term care insurance program that for the first time allows middle-class people a realistic and affordable method to plan for the possibility of becoming a person with a disability or for the possibility of suffering from a chronic illness. Unlike current long-term care insurance programs, which are prohibitively expensive and subject to impossibly stringent health criteria, the CLASS Act will allow anyone who is employed to pay into the program and to vest after five years of contributions. Like the Community First Choice option, the CLASS Act is designed to pay for the types of services that are critical to allowing people to remain in their homes rather than be forced into an institutional setting. In addition to helping individuals with a disabilities, both of these programs lift some of the burden off of family members who currently struggle to provide the necessary care that stands between their loved one living in the community and living in a nursing home. The inclusion of these two initiatives in the health care bill is a big reason why I am committed, as Chairman of the Senateâ&#x20AC;&#x2122;s health committee, to work with my colleagues to pass a comprehensive health reform bill this year. Far too much is at stake for Americaâ&#x20AC;&#x2122;s families and for people with disabilities. We will not give up! Sincerely,

Senator Tom Harkin www.harkin.senate.gov

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VSA President Soula Antoniou and CVS Caremark Director of Community Relations Jennifer Veilleux stand alongside participants of All Kids Can...CREATE! at the exhibition ribbon cutting ceremony.

tudies have shown that, among people of all ages, artistic creativity provides an outlet for exploration, discovery, and expression that can significantly enhance both personal and academic success. Recently, in collaboration with America’s largest pharmaceutical provider, CVS Caremark, the international organization on arts and disability, VSA Arts, sought to tap into that potential and enrich the creative energies of children with disabilities. The result of this joint endeavor is the “All Kids Can…Create! Program,” which just wrapped its third consecutive year in its mission to promote inclusive arts education for young people with disabilities. The theme of this year’s program was titled “State of the Art,” and drew from a call for representative samples of artistic achievement from young students from across the country. Participating in the program gave children the opportunity to take a closer look at their environments, at the traditions they continue within their own families, and at the ways in which they create art that reflects the roles children play within their unique communities. “It’s truly an inclusive activity,” said president of VSA Arts, Soula Antoniou. “We’re inviting these young artists to express their engagement with their communities, and then to share their artwork in the online gallery. The focus of this program is on creativity and inclusivity, allowing kids of all abilities to participate side by side in the process of creating art.”

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That process had a considerable amount of support. All 7,000 CVS Pharmacy store locations were involved in the effort, as was each member of VSA Arts’ nationwide network of affiliates. This June, the joint campaign will culminate in a national exhibition held in Washington, DC, where a sample of student artwork from every state and the District of Columbia will be displayed at the International VSA Arts Festival. All 51 selected artists will be invited to Union Station to celebrate the opening of the exhibition, and all artistic submissions to the project will be displayed both within an interactive kiosk and as part of an online gallery. According to CVS Caremark Corporate Communications and Community Relations senior vice president, Eileen Howard Dunn, the aim of the Washington, DC exhibition is to collectively showcase the compelling ways in which children view the world around them. “Art is one of the great equalizers for children of all abilities, because personal expression exists in all of us,” Dunn said. “The millions of commuters and tourists who’ll see this exhibition will review the pieces of work not on the physical or mental capabilities of their creators, but by the lasting impression each piece reveals.” This year’s International VSA Festival follows not long after the United States Convention on the Rights of People with Disabilities, and will also coincide with the 20th anniversary of the signing of the Americans with

Disabilities Act. This unique nexus of disability rights leadership and celebration will result in the largest gathering of the international arts and disability community in the world. As VSA recognizes the arts as being a vital component in the education and inclusion of all people, an International Education Conference will also be featured as part of the festival. This gathering will allow scholars, educators, administrators, and artists to gain hands-on experience in effective practices for inclusive education, providing them with tools and techniques to share with colleagues in their own communities. In 2009, VSA affiliates conducted Artist-in-Residence programming in eight states and the District of Columbia. Additionally, as a result of their participation in “All Kids Can…CREATE!” five teachers received $1,000 for use in their classrooms last year.

has helped thousands of children of all abilities reach their goal of creating and expressing their artistic visions. We’re thrilled to be a part of the enthusiasm and excitement the children bring to the process each year.” For more information about “All Kids Can…CREATE!” or the International VSA Festival visit vsarts.org 202.628.2800

Dunn believes the combined efforts of CVS and VSA Arts have only become more effective as each year has passed. “We’re engaging more and more young people in the value of creative expression,” Dunn said. “The program’s promotion of inclusion in our classrooms and communities ABILITY 11

Dual amputee Rudy Garcia-Tolson sprints to the finish during Arizonaâ&#x20AC;&#x2122;s Ironman Triathlon. 12

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hush came over the group of triathlon fans at the starting area for the Arizona Ironman. More than 2,500 athletes loosened their muscles, preparing to jump into the cool Tempe Town Lake for a 2.4-mile swim, the first leg of the three-event endurance race. And that’s when Rudy came walking by. People began to notice him. Athletes moved aside for their peer. And fans began to cheer and clap for the 21year-old simply known by his first name. “All of them parted like the Red Sea and began clapping and giving him his props,” says Bob Babbitt, vice president of the Challenged Athletes Foundation and one of Rudy’s mentors. “Everybody knows Rudy. Everybody. He’s like Madonna—you don’t need to know his last name.” For the record, it’s Garcia-Tolson. The applause, before the race even began, was a sign of Rudy’s impact. The bilateral above-knee amputee has competed in two Paralympic Games, earning three medals in swimming, and was about to embark on what he describes as his crowning achievement: an Ironman Triathlon. He had once attempted the Ironman World Championship in Kona, Hawaii, but missed the bike cutoff by 8 minutes. This time, in Tempe, Arizona, there would be no misses. Rudy finished in 16:06:27, becoming the first bilateral above-knee amputee to complete an Ironman. His swim time was 1:00:42, his 112-mile bike ride was completed in 8:44:45, and he blasted through the 26.2-mile marathon in 6:00:22. When Rudy came running across the finish line in the dark, his fists pumping upward, he almost looked like he could go do it all over again. But he admitted it wasn’t easy. “It was definitely a day of pain,” Rudy says. “I was just excited to see that finish line and to be able to call myself an Ironman. That was pretty exciting.” As might be expected, Rudy’s training for the race was intense. Missing the cut in Kona prompted the athlete to revamp his schedule for the November Ironman and move in with his coach, Muddy Waters. Together, they focused intently on things like nutrition, eating schedules and recovery. And Rudy spent a lot of time on the bike. By his own admission, Rudy has always struggled with the bike portion of the triathlon because his dual amputations, which occurred when he was age five, have left him with no quadriceps. Rudy was born with Pterygium Syndrome, a clubfoot, webbed fingers on both hands, a cleft lip and palate. Some might say the deck was stacked against him.

doctor Michael Davidson a critical question: “When is he going to walk and run again?” Davidson couldn’t give a definite answer, but it wasn’t long before he had found he would probably need one: Davidson once walked out of his office to greet Rudy and saw the youngster doing a handstand on his walker. “If this kid is going to run,” Davidson had told Babbitt, “I’d better figure it out.” Doctor and the patient began working together to improve upon Rudy’s existing prosthetic running legs. Davidson would provide the young man with legs to try, after which Rudy would provide feedback. It was not a smooth process. “Rudy broke over 50 legs as he tested what worked and what didn’t work,” Babbitt recalls. “So Michael would sit and ask him questions about the legs—why it broke, how it broke—and would be turning the leg as he talked, and Tootsie Rolls would fall out. Here’s this prosthetist working on a project and his partner is hiding candy in the leg.” Nevertheless, within a year of undergoing his amputations, Rudy was riding a bike. He used large training wheels on the side to assist with balance. Then he got bored, came home one afternoon, decided to take the training wheels off, and he never put them back on. Rudy admits powering up hills remains the toughest part of any marathon, since he cannot stand up to power his bike through the steep grades. In contrast to bikers who rely primarily on leg power, Rudy’s force comes in large part from his gluteus muscles. While training for the Arizona Ironman, Rudy deliberately changed his position on the bike to give him more leverage in the seat and to shift some of the output to below his waist. “I put it in a low gear and spin it,” Rudy explains. “Still, my muscles get fatigued after 70, 80 miles. I like to challenge myself. Since I do have some legs, I want to take advantage of them.” Babbitt says Rudy’s habitual positivity and determination were powerful assets in training for the Ironman. “I remember we were riding up a mountain and all of a sudden his cleats stopped working,” Babbitt says. “His right cleat would come out, so he’d just start pedalling with his left foot. Then his left cleat would come out and he would coast all the way to the bottom and have to start over. But not once did this guy complain. He would always say, ‘OK, it’s no big deal.’” Rudy’s infectious optimism has also made him a natural mentor for other young amputees. He frequently travels across the country just to talk one-on-one with youngsters who are facing the same road he once did. Rudy says he relishes the opportunity to connect with young people and show them what is possible.

Soon after his amputations, Rudy’s mother had asked ABILITY 13

appearance on The Oprah Show to their doctor in the hopes of finding a similar outcome for her son. In an amazing coincidence, Jay’s doctor, Peter Davidson, was the brother of the doctor who had helped Rudy years before. “Rudy was essentially able to be a role model for not only Jay, but for the whole family,” Babbitt says. “It becomes a situation in which a parent says, ‘If this kid can walk, then so can mine.’ That changes a family unit forever.” And Rudy’s long-distance influence on Jay is by no means an isolated incident. There’s also ten-year-old Jimmy, who sat in line with his dad for Rudy’s autograph. After learning that Jimmy had spina bifida and had been using his wheelchair for just about a month, Rudy signed the young man’s poster: “Jimmy, look forward to seeing you at the Paralympics in eight years. Rudy.” There’s also Cameron, who at age seven upgraded to the same prosthetic running legs that Rudy uses. Cameron had received them as a birthday present from the Challenged Athletes Foundation, which Rudy represents. And there’s Cody, an eight-year-old double amputee from Dallas, who aspires to be active just like Rudy. A few weeks after the Arizona Ironman, Rudy flew to Dallas to hang out with Cody and his mother. Rudy, who has now known Cody for four years, says he could always tell that his young protégé would do big things because of his positive attitude. “I like to think people like Cody are the future, not just of the Challenged Athletes Foundation, but of changing perceptions,” Rudy says. Broading his sphere of influence and inspiration, Rudy was the first double above-knee amputee to participate in the San Diego Triathlon Challenge, an event that serves as a fundraiser for the Challenged Athletes Foundation. This year, nearly a dozen above-knee amputees participated in the event. In spite of his achievements, Rudy humbly refuses to call himself a role model—that’s for others to determine, he says. But while he keeps pushing his body to achieve higher and higher physical goals, others continue to be motivated to follow in his example, clapping and cheering all the way. Rudy Garcia-Tolson, the first bilateral above-knee amputee to complete an Ironman, celebrates a finishing time of 16:06:27.

“I love showing little kids who have no legs that it’s just a challenge,” Rudy says. “I always tell them that it’s all about your attitude and how you go about your life. In reality, a negative attitude is the real disability.” When Jay, a young kid in San Diego, was told he would never walk or run again, Jay’s mother brought Rudy’s 14

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“It’s one thing to achieve success, but it’s a whole different thing to help others achieve success,” Babbitt says. “And Rudy does that.” by Josh Pate challengedathletes.org Ironman Rudy Garcia-Tolson facebook.com ironmanarizona.com

ell, I’ve just started training and riding again for the 2010 season. After my crash last year, I took some down time so that my broken collarbone could heal. But just because I wasn’t racing doesn’t mean I wasn’t keeping busy. Whenever I have time off, my parents and I try and get all of my contracts done and then decide how I’ll train for the upcoming year. One of the people who help me train is my riding coach. For two or three days every week, he and I go over some new skills and also practice some of my old ones. During the days I don’t spend with my riding coach, I ride with my riding partner so that we can work on the skills I’ve been taught. My friend Taylor Johnson recently came down to Florida to ride with me and run through some skills with my riding coach. During off days, Taylor and I worked on old skills and practiced motos. What is a moto? It’s a preliminary race (or “heat”) that keeps motocross racing skills in shape and determines which riders qualify. Each race I compete in requires that I ride two motos, and usually each moto is about fifteen minutes long, plus two laps. It’s important for me to make sure to make my endurance is up so that I can easily compete in both of these motos without becoming tired. Sometimes it’s frustrating to work with a coach when I would rather just be out riding, but I know that training is something I need to do to continue getting better at my job. In addition to working with a riding coach, I also spend a lot of time with a personal trainer. This person’s job is to be in charge of my workout programs and to monitor what I eat and how I sleep and how I do pretty much everything else in my life except for riding! He often does exercise tests with me to figure out where my strengths and weaknesses are so he can use the results to determine my program every week. Because my program changes weekly, depending on my riding schedule and personal schedule, I never know what to expect. It is nice to know that things won’t be boring! Every morning, I take my pulse and weigh myself and

give all of this information to my trainer. Amazingly, he can tell me a lot about my health just by looking at my pulse and weight. One time he even knew I was getting sick when I didn’t even feel sick. Crazy, huh? I do my workouts at my house, in a room that includes a rower, a stationary bike and an elliptical machine. Sometimes I use one machine for warming up and then another one for my actual workout. I also do some strength training, too, but most of it involves elastic bands or using my own body’s weight against me. Having a riding coach and a personal trainer really helps me do my best. Knowing I have them behind me relieves a lot of the stress I feel on race day because if I enter a race at 100% mental and physical capacity, the pressure I feel decreases. I know that a lot of times an athlete can feel stressed out or nervous, but I usually only feel stressed that I might let down my fans or sponsors. My strategy is just to go out and give my best in every race. I recently went to an electronics trade show in Las Vegas for my new sponsor, Able Planet, a company that makes headphones and headsets, as well as the linx audio technology that is used in hearing aids. Attending the trade show was the first opportunity I’d had to meet everyone from the company. I also hooked up with another girl who is part of the Able Planet team. She’s a snowboarder named Lauren and she is deaf, just like me. We had a great time just signing and talking to each other. It’s always pretty cool to meet other deaf athletes. The company slogan of Able Planet is “I Am Able”, which is definitely something I think everyone should believe about themselves.

ashleyfiolek.com ABILITY 15

he Equal Employment Opportunity Commission (EEOC) enforces federal laws prohibiting discrimination in employment. The following are recent cases brought about by the EEOC.

MERCHANT STATE BANK TO PAY $50,000 FOR DISABILITY BIAS Custodian Fired Due to Chemotherapy, EEOC Charges in ADA Lawsuit The EEOC today announced that Federal District Chief Judge Karen Schreier has signed a consent decree for $50,000 and remedial relief resolving the federal agency’s litigation against Freeman, South Dakota-based Merchant State Bank under the ADA. According to the EEOC, Merchant prevented a former custodian from returning to work while he was undergoing chemotherapy treatments for cancer. The employee was allegedly told that he should stay home in order to recover and that he need not worry about his job security. When the employee attempted to return to work at the completion of his therapy, however, he was told that he had been replaced. Under the terms of the EEOC consent decree, entered on December 23, 2009, in addition to providing monetary relief for the former employee, Merchant is required to ensure that its managers and employees are trained on the requirements of the ADA. Additionally, Merchant will report regularly to the EEOC regarding the circumstances of any termination of employees. “One of the things that we heard from the bank in this case was that the employee had been asked to stay home out of a sincere concern for his well being,” said Associate Regional Attorney Jean Kamp of the EEOC’s Chicago District Office, which has jurisdiction for South Dakota. “Even if we accept that to be true, 16

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employers need to understand that good intentions are no substitute for an understanding of, and adherence to, the law. The EEOC’s position is that telling an employee who can work to stay home and get better can violate the ADA.” EEOC Trial Attorney Ethan Cohen noted that the EEOC has been focused in recent years on large class and systemic cases of discrimination. “It’s true that the EEOC has been focusing on larger cases, and that often means litigating against employers located in metropolitan areas,” Cohen said. “This case should remind employers that they should not assume that they will receive a pass from the EEOC simply because they are smaller, are situated in a rural area, or are facing an individual claim of discrimination.” The EEOC Chicago District Office is responsible for processing charges of discrimination, administrative enforcement, and the conduct of agency litigation in Illinois, Wisconsin, Minnesota, Iowa, North Dakota, and South Dakota, with Area Offices in Milwaukee and Minneapolis.

DISABILITY SERVICES PROVIDER, CHESCO SERVICES, TO PAY $80,000 TO SETTLE EEOC AGE DISCRIMINATION LAWSUIT 73-Year-Old Denied Position Because of Age, Federal Agency Charges The EEOC announced today that a disability services provider will pay $80,000 and furnish other relief to settle an age discrimination lawsuit. The EEOC had charged that CHESCO Services, formerly known as Chesterfield County Board of Disabilities and Special Needs, unlawfully refused to hire a 73-year-old man for a position because of his age. CHESCO Services, of Columbia, SC, a non-profit

organization that is approved by the South Carolina Department of Disabilities and Special Needs (DDSN) to provide services to DDSN consumers, provides services to people in Chesterfield, Marlboro, Kershaw, Richland, and Darlington counties. According to the EEOC’s complaint, when CHESCO Services assumed operation of a residential care facility where Larry O. Knight was employed in early 2007, it consolidated Knight’s position with that of a position held by a 43-year-old co-worker. The EEOC said that, although Knight was well qualified for the newly formed position, CHESCO Services rejected him in favor of the less qualified 43-year old co-worker. Knight was age 73 at the time. Such alleged conduct violates the Age Discrimination in Employment Act (ADEA). The EEOC filed suit after first attempting to reach a pre-litigation settlement. In addition to monetary damages of $80,000 for Knight, the 30-month consent decree resolving the case includes injunctive relief enjoining the company from engaging in further age discrimination or retaliation against those who complain about it, requires the posting of a notice about the settlement, and requires the company to report information about its hiring practices to the EEOC for monitoring. “We are pleased that EEOC was able to resolve this case of age discrimination,” said Lynette A. Barnes, regional attorney for the EEOC’s Charlotte District Office which includes a portion of South Carolina. “Too often age bias is a motivating factor in hiring decisions, and employers simply write off older applicants. This case reminds employers that all people, regardless of age, deserve fairness and freedom from discrimination in the workplace. The EEOC will vigorously pursue claims of age discrimination.” The South Carolina Human Affairs Commission (SCHAC), which works with the EEOC in investigating charges of employment discrimination, originally investigated Knight’s charge. These charges raise claims under South Carolina law, as well as under federal laws enforced by the EEOC.

SENTRY CREDIT AGREES TO SETTLE A FEDERAL LAWSUIT FOR DISABILITY DISCRIMINATION Debt collection agency refused to hire a qualified applicant because she was blind, EEOC charges. A Seattle debt collection agency has agreed to provide $55,000 and other relief to settle a federal lawsuit charging that the company refused to hire applicant, Cheryl Reith. Although her online application for a recovery specialist position qualified her for an interview with Sentry, once the company's manager met Reith in person and realized she was blind, the

manager immediately stated, “This isn't going to work out.” Although Reith attempted to explain that she had done similar work for over eight years with the aid of assistive technology for the blind, the manager merely repeated, “This just won't work,” and sent Reith away. Reith, age 39, who has been blind from birth, said, “I almost broke into tears that day, I couldn’t believe how quickly I was dismissed. The interviewer’s rejection of me was so instant and blatant, and happened in front of several people… I never had a chance to bring up my success doing similar work for over eight years. All I really wanted was the opportunity to be considered for my actual qualifications and experience, not someone’s preconceptions of what it means to be blind.” Such alleged conduct violates the ADA, which requires employers to make reasonable accommodations to employees or applicants with disabilities unless it would pose an undue hardship. After an investigation conducted by EEOC investigator Bill Benedict, and after first attempting to reach a pre-litigation settlement through conciliation, the EEOC filed the lawsuit EEOC v. Sentry Credit. Under the terms of the consent decree settling the suit, Sentry Credit will pay Reith $55,000, post a notice in the workplace concerning the company’s commitment to complying with the ADA, institute training on preventing disability discrimination, and report to the EEOC any disability discrimination complaints that arise for the next three years. “Sentry’s refusal to consider accommodating Cheryl Reith turned out to be a huge loss to the company,” said EEOC San Francisco Regional Attorney William R. Tamayo. “Ms. Reith had excelled at very similar and even more demanding work with her previous employer with a modest accommodation. Had management at Sentry given Reith the opportunity to prove herself, they would have been rewarded with a very skilled and loyal employee.” “According to a 2009 study by the Job Accommodation Network,” added Seattle Field Director Luis Lucero,“ 56 percent of accommodations cost absolutely nothing to make, while the rest typically cost only about $600. The study also shows that most employers report financial benefits from providing accommodations due to a reduction in the cost of training new employees, a reduction in the cost of insurance, and an increase in worker productivity. With so much to gain, it is well worth it for an employer to comply with the ADA and consider if there is an accommodation that will allow an applicant or employee with a disability to get the job done.” eeoc.gov

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n expert on assistive technology and disability issues, Suzanne Robitaille is a former reporter for Business Week Online and is the founder of abledbody.com, a consumer website focused on disability innovations in the workplace. Profoundly hearing impaired from an early age, Robitaille understands well the challenges of navigating the workplace with a disability and, in her new book, The Illustrated Guide to Assistive Technology, provides guidance for people who might benefit from assistive devices at work and at play. ABILITY Magazine recently chatted with Robitaille about how her book can benefit employees with disabilities. ABILITY Magazine: What compelled you to write this book?

Robitaille: My target audience is the wide range of people with disabilities who are all over the workplace. In my very first chapter, I write about the fact that employers are required to provide reasonable accommodations for people with disabilities. Essentially, if you as an employee need a particular accommodation to perform your job, or to perform it better, your employer is supposed to provide that resource. So, if you look through my book, chances are you’ll see things that might help you in your job, and you can then ask your employer about those resources. There are other ways to get these accommodations—you can pay for it out of pocket, you can get reimbursed by insurance—but by far, the best way is to acquire them through your company.

Suzanne Robitaille: A publishing company had read some of my Business Week Online articles, which were mostly about assistive technology, and asked if I was interested in developing the topic into a book. So I did some research on the subject, and I found that there weren’t very many books on the market that approached this material from a purely consumer perspective. Most were medical-sounding books and academic-type books that were difficult to get through. So my goal was to talk about all of this in a much more consumer-friendly way.

The truth is, a lot of assistive technology companies don’t have the resources to promote what they do, so I think people who read the book will be pleasantly surprised at how much is already out there for them. So many companies are working to make life better for people with disabilities. There are even some iPhone applications designed to help people with disabilities, which many people don’t know about. One application called Proloquo 2 Go is great for people who can’t talk. It sort of allows them to simulate speech in a pinch. That’s on page 157 of my book.

ABILITY Magazine: How did you get started as a writer for Business Week?

ABILITY Magazine: Are there plans to convert your book into other formats?

Robitaille: I graduated from Medill School of Journalism at Northwestern University in 2000 and moved to New York that same year. After I’d worked with Wall Street Journal Online and helped them build their online operation, I got a job with Business Week Online, who asked me if I’d be interested in writing about assistive technology. A writer named John Williams had been doing a column for them and was leaving to start his own website, so I agreed to step in and contribute. John and I have different writing styles, so my work ended up being a different kind of column.

Robitaille: Yeah, a company called ReadHowYouWant is making the book available in audio, Braille, and large print.

ABILITY Magazine: What sort of audience did you have in mind when you set out to write this guide?

ABILITY Magazine: Frances West, the director of the Worldwide Accessibility Center for IBM, had some nice things to say about the book. Robitaille: Yeah, it’s gotten a lot of great feedback from people at IBM, the Assistive Technology Industry Association, Microsoft, the National Multiple Sclerosis Society, and the Business Leadership Network. But the publisher could only put so many good quotes on the back of the book. abledbody.com

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The definition of “disability” is any physical or mental impairment that substantially limits a major life activity. Disabilities include, but are not limited to, learning disabilities, blindness or low vision, hearing loss, speech impairments, and mobility impairments. Assistive technologies have helped many people to circumvent, mitigate, or eliminate the barriers to major life activities. In my case, I couldn’t comprehend language or use the telephone with just my hearing. When I was twenty-seven I got a cochlear implant; the surgery removed my natural hearing forever and replaced it with artificial hearing. Today I can hear on the phone. I have a device implanted inside my head that’s attached to a processor I wear behind my ear. I made the choice—and for me it was a good one—to allow assistive technology to play a large role in my life so that I could hear again. When I tell people I write about assistive technology, I can see their eyes glaze over—that is, until I tell them that this technology helps people with disabilities succeed in the workplace and in life space. Then their faces light up: “Oh my, that’s so wonderful,” they exclaim. “My sister has a learning disability” or “Gee, my father is losing his hearing.”

Chapter 1

WHAT IS ASSISTIVE TECHNOLOGY? Self- preservation is the first law of nature. -Samuel Butler Having a disability isn’t easy. Believe me, I know. I have had a hearing disability since I was four years old. Growing up profoundly deaf impacted my education, my lifestyle, and eventually my employment. Indirectly, it affected my parents, my sister, my teachers, my friends, and my bosses. But being deaf was also a blessing. It helped me build character; it gave me insight into a more realistic world than the one in which my peers lived; and it brought for me a love of books, and of writing, which my wonderful mother—who, like the rest of my family, was hearing— encouraged me to pursue as a career.

Suddenly, they can relate. That’s because disability affects most of us in one way or another. In the United States, 54 million people have a physical or mental disability. That’s 20 percent of the population. More than 20 million families have at least one family member who has been touched by disability. And one can add to that list the 80 million baby boomers, the growing number of children with special needs, and the thousands of soldiers returning from Iraq and Afghanistan who have service- connected disabilities such as limb loss and brain injury. Today, disability has been threaded into our national discourse. It affects health care, employment, education, and recreation. It has an impact on a person’s physical and financial health and well-being, not to mention on the strain on a family trying to provide care and attention. That’s why technology is so important for people with disabilities. Assistive technology devices can help someone improve physical or mental functioning, overcome a disorder or impairment, prevent the worsening of a condition, increase capacity to learn, or even replace a missing limb. ABILITY 19

Suzanne Robitaille speaks with technology writer John Williams during a CSUN Conference

TYPES OF ASSISTIVE TECHNOLOGY Assistive technology comes in many different shapes, sizes, and packages. It can be acquired commercially off the shelf, modified or customized, or designed specifically for one or more disability types. The one thing that all assistive technologies have in common is that they are capability enhancers.

Hearing aids Access ramps Wheelchairs Speech generators Talking books Closed- captioned television

There are ten classes of assistive technology devices, categorized by their main objective. They are:

In this book I discuss all types of assistive technology, looking at technologies that can aid individuals in their work, home, and lifestyle. These devices include the various types of low-tech and high-tech hardware, software, and gadgets that are available to people with different disabilities. However, I will pay closer attention to products on the higher end of the technology spectrum.

1. Architectural elements, such as adaptations to the home and other premises 2. Sensory elements, such as aids for communication and hearing 3. Computers, such as software and hardware 4. Controls, including environmental controls 5. Aids for independent living, such as personal care items 6. Prostheses and orthoses 7. Aids for personal mobility, including wheelchairs 8. Modified furniture and furnishings 9. Aids for recreation and sports 10. Services, such as device selection and training This list of classifications is widely used in the U.S. and around the world. In addition, assistive technology can be “no-tech,” such as Velcro for fastening one’s shirt; “lowtech,” such as a walking cane; or “high- tech,” such as screen-reading software. It can be specially designed equipment for people with disabilities, or standard equipment that has been modified for their use. Here are some more examples: 20

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For example, people with limited hand function may use a keyboard with large keys or a special mouse to operate a computer, people who are blind may use software that reads onscreen text in a computer-generated voice, people with low vision may use software that enlarges screen content, people who are deaf may use a text telephone (TTY), and people with speech impairments may use a device that speaks out loud as text is entered via a keyboard. In many cases, higher-tech assistive technology is more expensive, is harder to find, and has a learning curve, but the results can be extraordinary and life-changing. Without these technologies, someone might not be able to go to school, sustain a job, or communicate with family members.

DEFINING ASSISTIVE TECHNOLOGY Many people in my field don’t like the term “assistive technology.” It’s medical sounding, doesn’t trip off the tongue, and, quite frankly, seems boring. The legal definition of assistive technology was first published in the Technology-Related Assistance for Individuals with Disabilities Act of 1988, known today as the Tech Act. This act was replaced with the Assistive Technology Act of 1998, which established a grant program to provide states with funding for assistive technology products and services. In 2004 the law was amended to mandate, in some instances, that states provide alternative financing and loans for assistive technologies. I talk more about this in chapter 9, “How to Pay for Assistive Technology.” Congress defines assistive technology in Section 3 of the 1998 Tech Act as follows: Assistive technology is any item, piece of equipment, or product system, whether acquired commercially or off the shelf, modified or customized, that is used to increase, maintain, or improve the functional capabilities of a person with a disability. People with disabilities might be pleased or even surprised about what the U.S. government has to say on assistive technology and disability. According to the Assistive Technology Act, disability is “a natural part of the human experience and in no way diminishes the right of individuals to live independently, enjoy self-determination and make choices, benefit from an education, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of society in the United States.” Under the Assistive Technology Act, the Department of Education provides grants and funding to increase the “availability [of] and access to assistive technology devices and services” that will “significantly benefit individuals with disabilities of all ages.” Keep in mind that this law was passed two years before the proliferation of mobile devices, smartphones, mp3 players, and electronic book readers. It also preceded the Americans with Disabilities Act of 1990—the landmark civil rights legislation for people with disabilities—which I’ll talk about later in this book. On a less formal note, a former Business Week Online colleague, John Williams, should get some credit for coining the phrase “assistive technology.” John has been writing about disability and assistive technology since 1980—a full decade before the Americans with Disabilities Act was passed into law. He also started the Assistive Technology column, which I took over after he left Business Week in 2001 and continued until the end of 2004. BENEFITS OF ASSISTIVE TECHNOLOGY The benefits of assistive technology cross categories of age, disability, and health challenges. From young children to seniors, people may face a range of physical and cognitive limitations. Today, there are thousands of assistive technology products on the market to help people with disabilities with all sorts of needs, from the simple to the sophisticated. If you or someone you know has difficulty typing on a keyboard, reading a document, or hearing the TV, there’s probably a product that will fit your needs. It’s really just a matter of finding the right technology and figuring out how to use it. Sometimes I meet people who are afraid of using assistive technology because they believe it seems like a crutch. Believe me when I say it is not. In all the conversations I’ve had with people outside of the assistive technology world, they use words such as “cool,” “brave,” and “inspiring.” This is especially noticeable when the assistive technology is associated ABILITY 21

with helping someone who is already doing something well do it even better. Take, for example, Oscar Pistorius, the Paralympic athlete from South Africa who straps on blade runners (prosthetic legs) to run 100meter races, or Stephen Hawking, the brilliant astrophysicist with a neuromuscular disability who uses a device that helps him communicate his theories about black holes. Users of assistive technology must acknowledge that the device exists to help them. There is no stigma in using assistive technology as a daily or occasional aid in your life. Quite honestly, self-preservation is a human responsibility; it’s a hard world out there, and if you want to thrive, it is wise to do whatever it takes to stay on top of your game. With assistive technology, the families of people with disabilities benefit too. Instead of a wife having to read the mail of a person who is blind, he can read it himself using scan and speak software. Instead of a child making a phone call for his mother who is deaf, she can do it herself in sign language, over the Internet. One of the most important things to remember is that, as humans, we’re all temporarily abled. At one point or another, it is likely that each of us will use some form of assistive technology. If you have a disability now, you’re just starting a little sooner. Assistive technology is a life-changer. It can help individuals with disabilities increase their independence, build their self-confidence and self-esteem, improve their quality of life, and break down barriers to education and employment. The real challenge, of course, is finding the right devices and gadgets, for the right purpose, at the right price. Chapter 2

HISTORY OF ASSISTIVE TECHNOLOGY If necessity is the mother of invention, then disability is its grandmother. -Anonyomus In the beginning, there were bullhorns. That’s what hearing-impaired people used as tools to try to hear. In the 1870s, Alexander Graham Bell, whose wife was deaf, tried to develop a device for her to hear and ended up inventing the telephone. Until Louis Braille invented Braille in 1824, blind people couldn’t read; it wasn’t until the development of “talking” reading machines, including the one invented by Ray Kurzweil in 1975, that many people with vision impairments could have access to printed material. The history of modern assistive technology doesn’t go back very far. In fact, the people who are considered the pioneers of assistive technology are still around and working on next generation technologies. Many consider Gregg Vanderheiden, a professor at the University of Wisconsin-Madison, to be a leader in this field. In the 1970s Vanderheiden developed Auto Corn, one of the first communications devices for people who cannot 22

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speak. Today he is working on making the World Wide Web more accessible for people with disabilities. One of Vanderheiden’s partners in this initiative is Jim Fruchterman, a long-time inventor and assistive technology entrepreneur, who wrote in a 2007 op-ed in the Sacramento Bee: At an affordable price, everybody should have access to communications technology and content to meet their personal, social, educational and employment needs. We need to raise the technology floor so that all of our citizens have at least the basic tools they need to participate in our modern society. – “Everyone deserves access to technology.” Online world, Sacramento Bee, June 17, 2007. The first eyeglasses (about AD 1000) took the form of handheld lenses. It was probably an Italian monk, scientist, or craftsman who invented head-worn eyeglasses, in about 1285. When Gutenberg invented the printing press in 1456, which made printed books accessible to more people, the evolution of eyeglasses was fully underway. We also must recognize those who pioneered mainstream technologies such as the personal computer. Without Bill Gates and Paul Allen and their colleagues at Microsoft, or Steve Jobs and Steve Wozniak and their team at Apple, or Vincent Cerf, the father of the Internet, who committed themselves early on to making their technologies accessible to the widest audiences possible, the disability community wouldn’t be as well equipped as it is today. APPLE’S EARLY START Speaking at the Assistive Technology Oral History Project, Alan Brightman, former head of the Apple Education Foundation, noted the following: At Apple we made an interesting discovery after about three years of working to make the Macintosh more accessible for people with disabilities. We thought we were about accessibility, but we realized our real purpose was to fundamentally change the experience of being disabled. When we have this technology, and assuming that we can use it, all of a sudden we have a whole new range of degrees of freedom and we’re more independent. We could almost see people sitting up straighter in their wheelchair and almost adding inches to their self-esteem. It was a phenomenal consequence of being given this new gadget; this new technology. Source: Assistive Technology Oral History Project, with permission. The rise of assistive technology in the United States can be traced to the pre-computer era, particularly following the Second World War, when the great number of veterans with disabilities posed a dramatic social problem and prompted the U.S. Veterans Administration to launch a prosthetic and sensory aids program, which

was followed by many initiatives that spawned modern research into rehabilitation and assistive technology. Gradually the idea took shape that a person with a disability should aim not necessarily at bodily normality but at life normality, which inspired the first programs of vocational rehabilitation intended to help people regain access to work and productive life. The Vietnam War also increased awareness about disability civil rights. Veterans who returned home with disabilities in the mid-1970s laid the groundwork for the 1990 Americans with Disabilities Act (ADA), one of the most important pieces of civil rights legislation in American history. The ADA extends full civil rights and equal opportunities in both the public and private sectors to people with disabilities. Specifically, the law prohibits discrimination in employment, public service, public accommodations, and telecommunications on the basis of a physical or mental disability. An excellent movie on this topic, Music Within (2007), chronicles the activities of Richard Pimentel, a brilliant public speaker who returns from Vietnam severely hearing impaired and finds a new purpose lobbying on behalf of Americans with disabilities. The disability civil rights movement had to overcome not only prejudice but also physical barriers that limited access to employment and inclusion in other aspects of daily life. Activists successfully lobbied for laws that required curb cuts, ramps, and buses with wheelchair lifts. Crucial to the movementâ&#x20AC;&#x2122;s success was access to information and communication through technologies such as text telephones, voice recognition systems, voice synthesizers, screen readers, and computers. This access in turn increased the possibility of economic and social mobility. In the 1970s and 1980s, a growing population of consumers with mobility impairments fueled demand for wheelchairs and scooters to match their active lives. At the same time, barrier-free designs brought a new aesthetic to public spaces. Curb cuts are now ubiquitous in cities and towns, but they didnâ&#x20AC;&#x2122;t exist until people with disabilities fought for them. Advances in computer technologies have provided important stimulation for the development of assistive technology. Today, assistive technology is a specific discipline that brings together thousands of engineers, scientists, and doctors from around the world at various conferences and research centers to pave the way for a better tomorrow. Are we there yet? No, but the future is bright, and new technologies come out of the laboratories and onto the market every year that advance the field of assistive technology and the lives of people with disabilities. ABILITY 23

Denise allows viewers to follow her freshman year at the Texas School for the Blind and Visually Impaired in the PBS documentary The Eyes of Me.

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obody ever says coming of age is easy. Every teenager yearns to be better understood by friends, family, and perfect strangers alike, and even for many of the most outwardly confident high school students, the reality of growing up is one of unavoidable trial and error, of pleasure and disappointment, a challenging process of groping through the dark. For the four Texan teens at the center of The Eyes of Me, a new documentary from independent producer Keith Maitlin, such darkness is not a metaphor. Nor is it necessarily oppressive. It is simply a reality. These young men and women are students at the Texas School for the Blind and Visually Impaired (TSBVI). To call TSBVI a “special” school would be accurate and diminishing all at once. As explored by Maitlin’s film, the only special quality about TSBVI is that its students are treated as people to be challenged and enriched rather than as objects of pity to be swept smoothly towards a diploma. To witness the impact of such a learning environment on the kids who study there will no doubt be refreshing, perhaps even inspiring, to students (and parents of students) all too familiar with the diminishing returns of academic politics for many young people with disabilities.

Not that Maitlin’s film is all that interested in classroom life, anyway. Much like the four students it tracks through a school year at TSBVI, The Eyes of Me gets by on equal measures of listlessness and charm, generally keeping things positive and genial for grown-ups and kids alike, and flitting from school plays to broken hearts with only a few casual gestures at introspection in between. This is high school, after all. If The Eyes of Me never truly finds its center as a narrative experience, it does find an abundance of warmth and exuberance in Denise, a once-shy freshman who gradually blossoms at TSBVI. Once rejected at a play audition because of her visual impairment, Denise nevertheless embraces all that her new school has to offer, attending Prom, hosting her Sweet Sixteen party, and playing Cinderella in the TSBVI production of “Into the Woods.” It is the force of Denise’s personality, in fact, her graciousness and open-heartedness, that carries The Eyes of Me through even some of its most rushed sequences and lands the film’s most satisfying emotional effect. But it’s the dynamic aspiring musician Chas, a senior freshly emancipated from his family, who provides the film with both its title and its unique sense of pragmatism. “I’m tired of school, straight up,” Chas tells us as a statement of fact rather than apology. Demonstrating the sort of clarity of focus that Maitlin finds in none of his other subjects, Chas pursues a music career that seems far more substantive than a casual high school lark. He’s talented, driven, and wise beyond his years, as conveyed powerfully through his song “The Eyes of Me,” the

Chas, a senior at the Texas School for the Blind and Visually Impaired, provides a dynamic center for The Eyes of Me.

development of which Maitlin’s film documents. “Everything seems to be crumbling down,” Chas tells us in an interview segment that follows the dual realizations that his landlord plans to evict him and that his mother has once again flaked on an opportunity to visit. “But I will never ever let a single boulder touch me.” After spending just a handful of moments with this guy, we can’t help but believe him. Lost somewhere between the appealing sweetness of Denise and the unshakable confidence of Chas are Meagan and Isaac, two TSBVI students who seem to have a clearer sense of who they are than does the film. Meagan is a high-achieving senior whose interview segments occasionally veer into feel-good platitudes and whose goals the film leaves vague, aside from that of becoming valedictorian. Isaac, a freshman, is more troubled and potentially more interesting, since he is still adjusting to his relatively recent impairment and eventually finds himself in a sticky situation at school. But rather than explore the catalyst and outcome of Isaac’s bad behavior, Maitlin keeps the details fuzzy and essentially drops Isaac altogether. Given the likely rawness of Isaac’s experience with disability, his notable lack of screen time and abrupt dismissal can’t help but leave his story feeling like a missed opportunity. In the end, The Eyes of Me is a smoothly-produced mixed bag, bolstered by a pair of winning personalities in Chas and Denise. Though it never probes too deeply into the lives of its subjects, or into the uncomfortable fringes of their condition, the project manages to sidestep the all-too-frequent “disability film” trope, resisting the urge to spin its subjects into saints, martyrs, and made-to-order tearjerkers. These are just likeable kids. And they’re well worth an hour of your time. illegalfilms.net ABILITY 25

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lthough best known for his scene-stealing roles in The Matrix, The Fugitive, and the popular HBO series The Sopranos, Joe Pantoliano isn’t just a celebrated character actor. His latest and perhaps most vital role is that of an activist. Called “Joey Pants” by fans and friends alike, Pantoliano strives to raise social awareness and understanding of mental health through the work of his non-profit, No Kidding, Me Too! (NKM2). His efforts have spun the non-profit into a documentary of the same name, which addresses the challenges of mental health at both a global and at a very personal level. Pantoliano recently took some time from touring with the film to chat with ABILITY Magazine’s Chet Cooper about what the film and mental illness mean in his own day-to-day life. ABILITY 27

Chet Cooper: Congratulations on all of your success with the film and the non-profit. I have to ask, who came up with the name “No Kidding, Me Too”? Joe Pantoliano: I had produced and starred in a movie called Canvas, about the effect on a family when someone is diagnosed with a mental disease. And when I would get on airplanes, my fans would always say, “Hey, Joey, how are you? What are you up to? What are you working on? What can I see you in?” So l’d tell them about this movie and what it was about, and invariably, people would say, “No kidding? Me too!” or “You know, my brother, my mother, no kidding, me, too. How could I get a copy of the movie?” I’ve come to understand that this mental disease that occasionally lives inside of me is, for many people, the rule, not the exception. When we made the movie, we learned that one in four Americans are affected by a mental uneasiness and four out of five within the family nucleus are affected by the family member’s uneasiness. Cooper: Interesting. I haven’t heard it described that way: “uneasiness.” Pantoliano: I came up with that, actually, because I don’t think I have an illness as much as I have a sort of dis-ease, or a lack of ease. I’ve always been looking for peace of mind, for some kind of serenity depicted in commercials I watch on television or stories that lead me to think I might find that someday. We use a quote in our film: “Abandon all hope for better pasts.” What I’m trying to do, I’m trying to regulate my own sanity on a daily basis by learning to live with unresolved feelings. My feelings aren’t always true. My feelings are not something that I should be invested in or believe all of the time. And this realization is as a result of years of cognitive therapy with my psychiatrist, of taking antidepressant medications that have changed and enhanced my way of life by producing the dopamine and serotonin and norepinephrine that my own physical chemistry doesn’t produce in my brain. Cooper: Tell me what your plan is for this film.

Scenes from No Kidding, Me Too. Top: Joey speaking to a support group; chatting with Mackenzie; interview with Joey’s wife Nancy; and a walk and talk with Casey.

Pantoliano: Well, it’s been bought by WNET, Channel 13, and will be aired hopefully nationwide at the end of April, or possibly at the beginning of May, since May is Mental Health Awareness Month. I also know that Amazon has a 90-day exclusive on it. The general idea is just to get people to watch this movie and see that they aren’t alone—that there are so many strengths in the very things we are culturally taught are weaknesses. Cooper: I loved that the movie discussed that something as simple as changing your environment or using music or going outside for a walk can affect one’s mood more substantially than some medications. Pantoliano: Yeah! I just watched this documentary on PBS a couple of weeks ago, called The Emotional Life.

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They’ve confirmed that even if you move a muscle, you change your thoughts. One of the things our own film tries to look at, for example, is the reality that electroshock therapy is benign—it’s really not at all as dramatic as it’s made out to be in the movies. I used that sequence from One Flew Over the Cuckoo’s Nest, you know, when McMurphy gets jolted with the electricity. The point being that the movies—and I am from the movies and am influenced by the movies—send us the message that if it’s in a movie it must be true. So in this sense, Hollywood has either glorified, glamorized, romanticized, or demonized mental illness. What we’re trying to do in this documentary is just show that there is life after being diagnosed. We’re a cause. We’re a movement. And we’re using what we know how to do. What I know how to do is tell a story. Instead of writing a book, I can show you. I can show you these kids telling us what mental illness is really like, and I can show you that there is a solution. You can feel better. It’s as simple as taking a walk. It’s as simple as moving a muscle. Cooper: What kind of a challenge does this project present to you, as a public figure with that mental “unease,” as you put it? Pantoliano: My feeling is that our movement, this

movement, needs people like us. We need people who have the courage to put their images on the line. We were invited by the US Army to show this documentary in Iraq, and when the GIs saw this, they identified with the people who were in the film. And with me. And some of them said, “You had the courage to talk about your own disease and that gives me the courage to be open and honest.” Because the theme really is that you are only as sick as your secret. And science now tells us that the longer we maintain depression inside of us, it becomes a part of our brain makeup, whatever you want to call that. I’m dyslexic myself and I have attention deficit disorder. And I want to encourage people to know that it’s okay to have these uneasy feelings. We want kids who are six years old, seven years old, to know that if there’s something going on inside you that’s giving you stress, it’s cool to talk about it. Just as if you have a splinter in your thumb and you take it to your mom. Or if you’ve got a tick bite and you see a circle and you know it’s time to tell the nurse. We will be saving millions of kids the heartache that comes with this disease. I mean, look at me: I’m 55 years old, and it’s only been three to four years since I’ve been diagnosed, after having lived with this disease my entire life. My entire life! Now, since I’ve been in therapy, I’m going back into my past, and I’m realizing, “Oh, yeah, that was a nervous breakdown when I was 21. Jesus, my mother was bipolar. I do the same thing!” ABILITY 29

Joey Pants during the filming of No Kidding... Me Too

Pantoliano: (laughs) That’s right. No kidding, me too.

children, since you’ve just recently been going through your therapy with them standing beside you. It must be a challenge for them, too.

A great part of my own depression came from the anxiety and fear that I had as a kid who essentially couldn’t learn, who felt humiliation and got stomach cramps, who was rushed to the hospital and realized that if he got these cramps, he could avoid the expectation to do homework and avoid the humiliation of freaking out in front of a teacher. That was the beginning of my lying about stuff so I could avoid my own anxiety. It was a character trait, a coping mechanism.

Pantoliano: Oh, I’m so lucky. I’m so grateful that I didn’t lose any of them. I was about to lose everything that was holy to me, and because I couldn’t feel anything, I didn’t even know how great the damages would be. The street is littered with the wreckage of my past and how, when I was sick, I wanted everybody to be as sick as I was. If I saw happiness, if I saw my wife smiling, I resented her. In some ways I despised her for loving me. I knew how despicable I was.

I have this book called Daily Affirmations for Forgiveness and Moving On, by Dr. Tian Dayton. I read it every day, these little quotes that some days fit me better than others. My spirituality has a lot to do with the regulation of my sanity. Here’s the bit I just read yesterday: “I am meant to be happy. I have so much in my life to be grateful for. There is so much that is going on that is going well for me, so much that feels right and good. I have worked hard to know a feeling like this, and today I will let myself have it. It is time for me to accept being happy. I want to trust life as I did when I was young. I am here to be happy.”

I remember telling someone that there is not a person on this planet or in the universe who I would allow to treat me as poorly as I treat myself. Is that part of mental illness? Maybe. My teachers had always said, “He’s not stupid, he’s just lazy.” What I used to think was the occupational hazard of being a creative person, this depression, is something I’m now tapping into to try to change the nation and the world into thinking that it’s cool to have a mental uneasiness. I want kids all across the country to go, “I want that, Mommy!”

Cooper: As I was watching your film, it struck me how strong your relationship must be with your wife and

Pantoliano: Well, you know what I mean. We want it to be as cool and trendy to talk about mental dis-ease as it

Cooper: No kidding, me too.

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Cooper: (laughs)

would be to talk about erectile dysfunction. Cooper: I still don’t know if erectile dysfunction is considered cool yet. Pantoliano: (laughs) Well, politicians and race car drivers can talk about it and get paid ten million bucks, so I guess what I really mean is that it would be nice to have a really big star or big shot say, “Yeah, no kidding, me, too.” I mean, there are a lot of big names in these twelvestep programs—Drugs Anonymous, Alcoholics Anonymous, whatever—who would much rather be considered an alcoholic than somebody with bipolar disorder. You see these kids come out of rehab openly saying, “I was there for cocaine, for alcohol,” but they don’t say, “I was there because I was diagnosed with bipolarity or schizophrenia.” Cooper: I have a pretty bad sweet tooth, myself. Pantoliano: (laughs) Well, it’s mental uneasiness that creates the sweet tooth or creates the alcoholic or creates the drug addict, and as a result you need more and more of that one thing to get “the high.” You need more of the alcohol. It stops working. More of the drug. It stops working. More of the food. It stops working. Even the best books out there will tell you that these addictions are merely symptoms of the way that our brains work, symptoms of our thinking. But the only healthy thing I ever did to combat my own depression was exercise. I’ve never needed more running. It always works. And if I walk a half an hour a day or do my yoga, if I’m moving, if I’m sweating every day, it does help me from getting that sadness in me. This stuff is hard work, and it’s not for the weak of heart. I’ve dedicated a lot of time to battling my mental illness and to working on my mental health regulation. I talk about this with anybody who will listen, and I go to twelve-step meetings and yoga and exercise and it all helps me to stay right-minded. But in my opinion, I’m working against not so much a disease as a dis-ease. I’ve been trying to find happiness my entire life. When I was a little kid, there came a time when I just didn’t feel right. It was in the second grade when I started getting left back, and I was scared, and my mother and father were always broke and always fighting. So I felt odd. I felt like it was my fault. I wasn’t happy any more, and I ate a lot of food. And I found that eating made me happy. So then I became a fat kid. Then the kids made fun of me and I wanted to lose weight so I could avoid being made fun of, and I found starvation. And that caused a feeling that was even better than stuffing my face. Before you know it, I had developed an eating disorder. Finally, I saw a new goal for myself. I figured, ‘if I’m a movie star, if I’m rich and famous and I can have any ABILITY 31

girl I want, that’s what’s going to make that hole inside of me go away.’ So for me, it all began with those early thoughts. And it wasn’t until my doctor had said that what I was feeling was not my fault, that it could be treated, that I began to feel like I could manage it. The science tells us that once people with a mental illness surrender to the idea that they have one, they can enjoy upwards of 80% recovery just by talking to their doctor and taking their pharmaceuticals if needed. I’d love to have those odds as a cancer patient. Cooper: How do you draw that distinction between your concept of “dis-ease” and what is considered to be illness? Is dis-ease something of a shifting dynamic, as happiness might be? Pantoliano: The way I try to think about dealing with it is similar to how I might deal with the flu. When my depression comes around, instead of trying to be happy, instead of trying to push it away or drink it away, I just allow myself wallow in it. I just feel it. It’s a feeling, and we as humans are designed to have those feelings. They can save our lives, in fact. When we were out in the wilderness, there was a constant choice between fight or flight. If we saw a tiger running at us, we’d say, “Oh, there’s a tiger. Better react.” If we were designed to be happy all of the time, we might just say, “Oh, look 32

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at that cute little kitty coming at me. Here, kitty!” I don’t know if you’ve ever read Eckhart Tolle? Cooper: No. Pantoliano: He’s brilliant. He’s been another great component of my recovery. Anyway, Tolle tells a story about two ducks in a pond. One duck comes flying in and accidentally lands on the water, hitting all of the other ducks. The ducks look at each other, snap at each other, flap their wings, and then they kind of float off. If those ducks were people, they would say, “Did you see that duck? He was within a couple of inches of smashing right into me! Who does he think he is? Does he think he owns this pond? I can’t believe he treated me like that!” So the ducks might fester that resentment. But instead they just go about the rest of their day. Cooper: I think that’s where the term “duck” comes from. Pantoliano: (laughs) I was at a mental health event once, and they referred to all of us as “consumers.” I really hate that, you know? I just want to be called Joey. I don’t want to be identified by my disease. Cooper: It’s difficult. All of these different nonprofit

groups face the challenge of asking the question, “What are we going to call the people with whom we’re working? We want to be different. We don’t want to call them ‘clients’ or ‘members’.” Pantoliano: I think I’d rather be called “emo.” Cooper: (laughs) There’s debate about language everywhere. Do you know about the movement called Mad Pride? Pantoliano: Yeah. ABC did a story on them, and I was virtually manipulated into being part of this very scary story that depicted mental illness as something to be feared. The implication was that, if you have a mental illness and you don’t treat it, don’t take your medication or whatever, you could be as amazing as Van Gogh or Michelangelo or whomever, but you’d wind up stickin’ an axe in your mother’s head. On the other hand, if you treated that mental illness, then you would never be able to make the paintings that Michelangelo and Van Gogh made. I think that’s complete and utter bullshit, you know? Look at all the great writers who are in recovery. Does that process make them any less great at their art? No! So, scary stories like these are only going to push somebody who is on the cusp of dealing with their situation to think they’re powerless. It’s going to encourage them to keep themselves in the closet. Listen, without my meds, I don’t think any of my work on myself would stick. I’d be in and out, in and out. Today is my anniversary, actually. Two years of continuous sobriety from drugs and alcohol. Cooper: Congratulations. I didn’t get you anything—my bad. Pantoliano: (laughs) That’s okay, you’ve got a whole month. Anyway, I guess part of my purpose with No Kidding, Me Too is to educate society that there is a stigma and shame that shrouds the all-American brain. If you’ve got a bad heart, they can take it out and throw it away. You get a new heart. But you can’t get a new brain. Much of our purpose is to remove the stigma associated with mental disease through the breaking down of societal barriers. We want to teach people that it’s okay to have a mental disease, and that if you feel like you do, you should acknowledge the disease if you have it, and get the treatment you’re entitled to, thereby becoming an even greater member of society. Cooper: Does your organization have forums and blogs for people to use to connect to each other? Pantoliano: Yes, and we provide the individuals anonymity, if they desire. But at its core, No Kidding, Me Too believes that mental illness does not have the luxury of anonymity. With post-traumatic stress disorder, for example, there are many ways to arrest the condition

through pharmaceuticals, but the best way is by reliving the experience over and over again in a therapeutic community, by talking about it and sharing that experience with another human being. By doing that sort of thing, you can essentially invalidate the condition and turn it into a story. The reason we went to Iraq with the documentary is because there is such a serious suicide rate in Iraq and Afghanistan—GIs killing themselves—especially among Anglo-American males between the ages of 19 and 22 within the first six months of deployment. These kids are being trained to go into battle, and then when they get there, they’re struggling with themselves. But after six months of being in Iraq and Afghanistan, the chances of completion of a suicide will start to diminish. I believe—and this is just my own personal opinion—that the media is misleading us by not clearly articulating that. A lot of people don’t know that the GIs are killing themselves more often than they are being killed. It’s just not talked about. When reporters say, “It’s day so-and-so of the war and there have been so-and-so many deaths,” they don’t include the deaths by suicide. They don’t even include the men and women who have been wounded in the military. They’re not including the numbers that we have in our documentary which show that something like 18 American heroes come back from Iraq and Afghanistan and kill themselves in the US. Nobody mentions that. So I hope that, by using the bright light of celebrity, we’re able to shine into the corners of darkness and stigma and shame that shroud mental illness from the public. If we spent less money and research finding out where depression comes from and more money on education, we’d learn that there really is no shame in mental illness. Once we recognize that, it won’t take people upwards of eight to 10 years of struggle before they’re even diagnosed, not to mention before they manage to confront all of the cultural bias that exists. After Michael Jackson’s death, it came out that he was diagnosed with schizophrenia by the time he was 18 years old. But because of the shame and the stigma, nobody could know that this guy was hearing voices, and everybody around him had to hide it. If he had been encouraged to seek treatment and get help and be vocal about it, think of all of the millions of people that might have found some comfort. One percent of the planet’s population deals with schizophrenia every day. That’s really the driving force behind what we’re doing with this nonprofit and this film. We want to promote what we believe in and we want to encourage people to get this movie and to see the miracle and bravery of these souls. These are hope’s miracles. They’re not anonymous anymore. nokiddingmetoo.org ABILITY 33

Photo by: Nancy Villere - CrushPhotoStudios.com

ore than a decade since the release of his debut album, the new year finds Mark Goffeney hard at work on a collection of infectious rock that blends the poeticism of Death Cab for Cutie with the heavy indie flavor of the Foo Fighters. “It’ll knock you over, ask you if you’re okay, and pick you up again,” musician Goffeney said in an interview with ABILITY’s Dana Nelson. Though his album’s title remains under wraps, Goffeney says the upcoming release will contain a few tracks from his original album, as well as several new pieces that reflect the artist at a more mature stage of life and introspection, a stage at which he finds his music has become more honest, irreverent, and optimistic. Produced at Tunetown Recording Studio in La Mesa, CA, the album is a labor of love for Goffeney’s band, Big Toe.

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“This album is going to be a compilation of some really cool, heartfelt stuff,” said guitarist Sammy Carini, who is co-producing the album alongside Don Hambrick. Carini also said the album is a step towards marketing Big Toe music around the world and going on tour. Long before his emergence as Big Toe’s frontman, Goffeney had become well acquainted with fame. Born without arms, he was discovered at age four by Variety Club and the March of Dimes and assisted in raising money for children’s hospitals during telethons. Outfitted with prosthetic limbs, Goffeney interviewed such celebrities as Magic Johnson, Henry Winkler and Prince Charles. Though he liked the work and enjoyed hanging out with stars, Goffeney recalls that the prostheses were painful when worn for hours on end. “As soon as I would get done with filming for the Variety Club,” Goffeney said, “I would just ditch them as soon as I could.”

Not that he needed them, anyway. At an early age, Goffeney had learned to use his feet to manipulate objects, just as many other children were learning to use their hands. Prostheses, Goffeney said, were for everyone else to feel more comfortable, regardless of his own discomfort. “Visibly, it’s not as dramatic when you see somebody with all their limbs as opposed to seeing them without.” While Goffeney recognizes his lack of arms may still register as a shock for some people, he no longer worries that others might feel uncomfortable around him. Instead, the musician relies on humor to alleviate awkward situations. Carini recalls being terrified the first time he got into a car with Goffeney and found him with one foot on the floor pedals and the other on the steering wheel. When Carini asked to drive, Goffeney merely quipped, “I just want you to sit there and be nervous.” Throughout childhood, Goffeney learned to use his prostheses as sources of amusement, sometimes telling other children that his arms were bionic, and that he could lift a car or tear down a school any time he wanted. Though many of his classmates were in awe of Goffeney’s alleged superhuman strength, most had a harder time believing he was hanging out in limousines with celebrities on the weekend. Goffeney’s musical career was sparked in his school band, beginning with a brief stint on trombone before his father brought home a guitar. Eleven-year-old Goffeney, raised listening to musicians such as Paul McCartney and James Taylor, crudely strummed the guitar with his feet, in an attempt to emulate his heroes. The result, however, was that he only played one string at a time. A neighborhood teen told Goffeney that if he wanted to be a real guitarist, he’d have to learn to play with all of his toes. As he diligently worked to learn guitar and bass, Goffeney simultaneously pressured his Hollywood friends to help him break into television as an actor. Goffeney’s break arrived when a writer for The Young and the Restless agreed to write the young man in as the son of Dr. Snapper Foster, a character played by David Hasslehoff. At the last minute, however, the program’s board of directors decided a character with no arms would be too shocking for older viewers of the show, and Goffeney’s character was replaced by a boy with leukemia. “I was heartbroken,” Goffeney said. “I was just devastated. I was like, ‘they wrote that part for me!’” The disheartening experience prompted Goffeney to focus more intently on pursuing a career in music. He

formed a high school band known as the Wicked Misfits that, like many other popular bands of the 1980s, emulated heavy metal hair groups such as Poison and Ratt. Goffeney also grew his hair out, a decision which he remembers aggravated his cheeky British mother. “She would say things to me like, ‘you know you’d make a right nice mop!’,” Goffeney said, imitating his mother’s dialect. “‘We could stand you in the corner, nothing to get in the way. I’ll just hold you by your feet!’” Though Goffeney admits he was frequently a “punk” during his teenage years, resisting authority and getting kicked out of school a few times, he married shortly after graduation and became the father of three children: Beth, Luke and Amanda. “I had to trade in my Camaro for a Minivan. It was tragically tough!” Goffeney said. “I had to grow up really fast, but it was also a really rewarding experience.” After dropping out of college, Goffeney worked an assortment of odd jobs while raising his children and juggling late-night gigs with his new band, Big Toe. When he was in his mid-twenties, a friend suggested Goffeney and his band play at San Diego’s Balboa Park, a popular public venue for street performers. “You’ll make a dollar a minute,” the friend had said. Goffeney set out for the park, skeptical of his chances at success, but willing to give the experience a try. He set up his guitar and began singing. As Goffeney sang and strummed his guitar with his toes, a crowd began to form, ABILITY 35

dropping money in his guitar case. But his performance was cut short when a police officer told him to pack up and leave: Goffeney didn’t have a performer’s license. Nevertheless, he was stunned to learn that, during nineteen minutes of playing time, he had made exactly nineteen dollars. “That was it. I was done,” Goffeney recalled. The musician quickly got his performance license, quit his job, and was back in the park the following weekend, launching a full-time career as a street performer. “All of my childhood, I had wanted to be a rock star,” Goffeney said. “I was trying to get my band on all of these shows, but it was never quite working out until I started street performing. Everything sort of started working together.” Goffeney’s street performances were so impressive that by 1999 the hard-working musician had landed his first record deal. Steve Dudas, former producer for Aerosmith, Ozzy Osborne and Ringo Starr, signed on to produce Goffeney’s debut album. People walking through Balboa Park began recording Goffeney’s performances and posting them on YouTube. In 2003 one of those videos went viral—to date, it has garnered nearly eight million views. Meanwhile, Goffeney fielded offers to perform at music festivals around the world. He even scored a role in a Super Bowl commercial. Hailed as a bona fide YouTube phenomenon, Goffeney and Big Toe were invited to compete in 2007’s The Next Great American Band, an American Idol spinoff produced by Simon Cowell. Though they didn’t make it to the final rounds, the band earned a mention on E!’s The Soup, a comedic entertainment news program. Big Toe also participated in StarTomorrow, an online-only NBC music talent search, winning in week one and week six. The band ultimately placed fourteenth out of 92 contestants, but were most pleased when David Foster, a producer and fifteen-time Grammy award-winning songwriter, gave them a positive review. In the midst of all of his newfound visibility, Goffeney was also frequently invited to give motivational talks at schools and workplaces, eventually becoming a spokesperson for ABILITY Awareness and participating at an ABILITY Build construction site in Hawaii. Goffeney says he was thrilled by the opportunity to send a strong message about capability through his life and work. “I was very happy with the idea that people with disabilities are part of a contributing force to society, rather than just on the receiving end of the population,” Goffeney said. Though he noticed that some participants at the ABILITY Build site had assumed that the volunteers with disabilities were only on-site as part of a job training program, Goffeney recalls that these lowered expectations only propelled him and the other volunteers to work as hard, if not harder, than those around them who did not have disabilities. 36

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“It wasn’t enough for us to symbolically appear to be helping,” Goffeney said. “There was a genuine desire to really make a difference, and an underlying desire of challenging the stigma that people with disabilities are needy people.” In an effort to promote the ABILITY Build, Goffeney performed on a Hawaiian morning show and invited local volunteers to join in the effort. Amidst all of his successes and media attention, Goffeney has turned down countless requests from producers interested in filming a documentary about his life and experiences. Goffeney admits having a camera follow his every move was a venture that had always made him hesitant. “As a performing artist, if you give yourself away, if you show everything about your daily life, then you’ve lost your ability to be something else to other people,” Goffeney said. “I don’t really want to know what kind of toothpaste Ozzy Osborne uses, you know?” It was the TLC Network that finally broke down Goffeney’s defenses. At the request of Destin Cretton, director of Bartholomew’s Song, Goffeney traveled to Holland to perform live at the 2009 CAP Awards, with TLC documenting the experience for Born Without Arms. In spite of his reservations, Goffeney remembers being impressed with the finished film. “I liked Destin Cretton’s filming,” he said. “They were able to capture who I was, even though I was on there with two other people who were born the same way. They really showed how different we all were from each other.” Now Goffeney says he isn’t so reluctant to participate in the documentary experience: 25/7 Productions, best known for producing The Biggest Loser, is currently developing a reality show based on Goffeney’s life and career. In the meantime, though, Goffeney continues to record with Hambrick and Carini, an experience which is as rewarding as it is challenging, since the three passionate musicians occasionally butt heads over the lyrics or sound of a piece. “Songwriting is not something there’s a blueprint for,” Carini said. “It’s a thing that is so personality and character driven that you can never say how to write a song. It’s all about how your personality lures you to write.” Both Carini and Goffeney believe the process, however difficult it may be, will result in strong, genuine music to which Goffeney believes others will certainly relate. “The more American Idol pushes musicians in a cookie cutter mold, the more people are looking for authenticity,” Goffeney said. “I will jump through a burning hoop in a tutu if it will get people to come to my show.” Goffeney is currently “in talks with the networks” about his new reality show, but if he’s willing to jump through fiery hoops in a tutu, you can bet the end product will be a worthwhile experience. To listen to Mark Goffeney’s music, or to book him for your next event, check out BigToeRocks.com or MarkGoffeney.com

acquire a disability. Prior to the earthquake, several local and international organizations had reported approximately 800,000 people with disabilities in Haiti. That number has now substantially grown.

he aftermath of the earthquake in Haiti’s capital city of Port-au-Prince is, in a word, overwhelming. Relief efforts are in overdrive, collecting money, medicine, manpower and machinery. Images of front-end loaders moving bodies, and of cities of tents baking in the sun, will resonate for years to come. But there are survivors. And the question remains, what will happen to them now? Beneath all the devastation and destruction, there is indeed an opportunity in Haiti. Organizations worldwide are approaching the chaos and its gradual recovery with a unified goal: to give people with disabilities a voice as the city’s infrastructure gets repaired and rebuilt. “There’s a growing focus on the many survivors who have become amputated due to crush injuries, who have difficulty obtaining medical care and untreated infections,” said Rob Horvath, who has been involved in disability and rehabilitation at USAID for 17 years. “We’re working to deliver crutches and wheelchairs, and to involve groups of orthotists, prosthetists, surgeons, podiatrists and therapists. Efforts are underway to coordinate public and private sector donations. We recognize how important it is that all of the needs of these individuals are addressed.” Horvath notes that those with newly-acquired disabilities as a result of the earthquake include individuals with spinal cord injuries, traumatic brain injuries, and injures to mental health. The ink is now drying on a formal commitment from Haiti to keep people with disabilities at the forefront of this conversation, as the country was one of 143 signatories to the United Nations Convention on the Rights of Persons with Disabilities, which was ratified in July. Article 11 of the Convention addresses risk and humanitarian emergencies, stating that “parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.” Haiti has also made a commitment of respected personnel, having appointed Dr. Michel Pean to the role of Secretary of State for the Integration of the Disabled. Pean has worked for years to educate the Haitian people on equality for people with disabilities. According to the United Nations Children’s Fund (UNICEF), for every one child killed in a disaster, three

“A number of those people are in serious difficulty, particularly when it comes to assessing the range of assistance available on the ground,” said Wendy Batson, director of the U.S. division of Handicap International (HI). “Working with the other partners that emerge, we’ll be setting up what we call disability and vulnerable focal points, where we’ll already have staffing provided for them.” These vulnerable focal points will be central locations for aid for people with disabilities. For amputees, the challenge to provide assistance will be great. HI and Christian Blind Mission International (CBM), an international development organization, estimate the number of amputees following the earthquake to be anywhere between 2,000 and 4,000. Karen Heinicke-Motsch of CBM said the Haitian people themselves are heavily involved in the rescue and recovery response. Local leaders have met with CBM and its partners for a discussion focused on availability of prosthetics. In an effort to help manage this and other efforts, the World Health Organization has tasked HI and CBM to form subgroups on disabilities that will focus on the coordination of assistance for Haitians who suffer from traumatic injuries which may lead to both short-term and permanent disabilities. Additionally, multiple organizations—including Hanger Orthopedic, Whirlwind Wheelchair, Christopher Reeve Foundation and United Cerebral Palsy Wheels for Humanity—are providing medical equipment and orthopedic devices. Financial assistance, medical supplies, equipment and even a sense of organization will all help in the efforts to establish a stable Haiti. But the construction of a longterm infrastructure for the nation is, in many ways, one of rescue workers’ top priorities since the earthquake has forced Haiti to start almost entirely from scratch. “Organizations are assessing the damage, connecting the staff, and trying to salvage equipment,” Heinicke-Motsch said. “The school for the deaf was destroyed, the school for the blind was destroyed and the special education center was destroyed. And a number of other centers have been devastated. There is much work to be done.” “We should commit to working with Haitian disability leaders and others to keep the focus on the immediate, intermediate and long term needs of Haitians with disabilities and work to facilitate integration, inclusion, selfdetermination and universal design in all physical, programmatic and communications efforts,” Horvath said. “Individuals and others with skills in disaster recovery, universal design, and integrating survivors with disabilities in every aspect are going to be needed.” by Josh Pate usaid.gov/haiti

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Racer Michael Roman shows off his Lakester at Utah’s Bonneville Salt Flats. It was at this site that Roman set a world land speed record.

ichael Roman’s life was over.

He was receiving up to 60 milligrams of morphine a day. He was on 25 milligrams of valium daily. He was in an active state of delusion, out of his mind, unable to connect with his wife, three step-daughters and a son of his own. His life was, in a word, hell. Roman was also more than a million dollars in debt, thanks to ballooning medical bills from a staph infection that had developed after a knee injury and which had necessitated amputation of his right leg. He was spending $3,000 a month on his morphine prescription alone. And work? Well, he hadn’t done that in a decade. The chronic pain Roman endured also meant that his passion for racing had to be shelved. Racing while medicated was not an option. Nevertheless, Roman tried desperately to juggle his new life: a surgery, rehabilitation during the winter months, then racing from March until the end of the year when his body was spent once again. Another amputation, another four inches cut off his femur, another rehab stint, another racing season. Eventually, however, the pain took over and constant medication was needed. In the span of 12 years, Michael Roman underwent more than 40 operations on his right leg. His children had not known him to go a year without surgery. After performing multiple amputations, his surgeons finally stopped at the hip, ending with a right hip disarticulation in which a patient’s femur is removed completely. Yet, for Roman, the phantom limb pain stayed. 38

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He was classified as a chronic pain patient: someone for whom pain signals keep firing along the nervous system for weeks, months, or even years. And he wasn’t alone. According to the American Medical Association, 45 million Americans seek care for persistent pain at some point in their lives. Maybe suicide was the answer, Roman frequently thought. He surely couldn’t go on living with the pain and in a constant medicated state while his wife worked two jobs and took care of the family. “I was barely hanging on,” Roman remembers. “The pain was like spiders crawling. It was torture. There was no relief. I just didn’t understand why all of this was happening. I struggled so hard with it.” Roman sought help through this struggle from a doctor with whom he had worked in the operating room years ago, when Roman served as a surgical assistant in his hometown of St. Louis. The two friends were blunt in their conversations.“Mike, we just can’t do this anymore,” the doctor simply said. Roman knew that too often the solution to chronic pain stops with medication. An ankle sprain can be treated with pain medicine, then rest, then rehabilitation. But if a patient’s pain persists for an extended period of time, even after such treatments, what is the answer? For distinguishable conditions and diseases, there exists a support system. There are family concerns, medical specialists—an oncologist for cancer, heart doctors for heart conditions—and solutions. “But with chronic pain, people just say ‘go back to work,’” says Philip Hearn of Boston Scientific, a com-

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pany leading the search for technology to help treat issues such as chronic pain. “You go to doctors and they look at X-rays and say, ‘You’re fine.’ They can’t see what’s going on with the nerve. “Imagine having a bad headache every day without pause,” Hearn explains. “It’s hard to live a normal life. With Mike’s story, you can see how pain becomes his life. It’s a psychological component, too. It’s inside your body, you know it’s there, and doctors are telling you they’re sorry, there’s nothing they can do to help you. That’s got to really raise havoc on the psyche. And you lose a lot of your social support because you’re essentially seen as a drug addict.” The answer, doctors believed, was to send Roman to a pain management specialist who suggested a spinal cord stimulator: an epidural with a wire connected to a battery that helps to steer pain signals to the brain. To this day, Roman has a remote that dictates when pain signals are intercepted. Instead of sending a distress signal, the pain is masked with a slight tingle. This sensation of “pain” is thereby made much more manageable. Similar technology allows people with hearing impairments to understand sounds. And for Roman, the device was a blessing. “It was like a light switch went off,” he says. “After three months, I was off half the medication I had been on. In six months, I was off all my medicine for the first time in a decade.” The particular machine that Roman used, called the Precision Plus Spinal Cord Stimulator System, was made by Boston Scientific. And Roman, being an outspoken individual, reached out directly to the manufacturer. “I called Boston Scientific in California and just told them flat-out, ‘you suck at marketing’,” Roman says. “It took me 10 years and a million dollars to find this solution. I want to help get the word out.” And that’s when a bold new partnership began. Today Roman is the first to admit his long road to recovery ultimately changed his life, helping him become more goal-oriented and, ultimately, to race again. Together with his wife Susy, Roman remains dedicated to spreading his story. Hearn believes that for many, Roman’s is a story that could help lead to years of lessened pain and struggle.“If you have cancer, you go see an oncologist,” Hearn says. “If you have a heart problem, you go see a heart doctor. For some reason, when people have pain, they stick with their family practice doctor or see a surgeon or a chiropractor. Some of those things work. But if your pain persists and it’s bad, go see a pain management specialist. That’s what this whole thing is about. Mike’s done a great job of helping us with that.” After reclaiming his life away from pain, Roman 40

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branched out to land speed racing and emblazoned Boston Scientific’s name on the side of his car. On August 14, he set a world land speed record at the Bonneville Salt Flats in Utah in his custom-built Lakester with an average speed of 165.127 mph. It was Roman’s fifth world record. “The one thing I learned on the Salt Flats is that dreams come true if you have the courage to dream,” Roman says. “I’m a dreamer. That’s what I do.” Roman’s dream has also parlayed itself into a website, raceagainstpain.com, where pain patients can type in their zip codes and find specialists near their homes. Last year, Roman delivered more than 120 speeches around the nation on the subject of overcoming his experience with pain—an experience which has now been immortalized in a documentary film. Roman’s travels have also taken him to Walter Reed Army Medical Center, where he talked with veterans in the Wounded Warrior Project, ultimately promoting the initiative on his race car. He has taken up competitive handcycling, and now has dreams to compete in the Paralympic Games, a goal he says would represent the ultimate achievement. He has also spoken to Congress, pleading that, no matter what happens in the health care tug of war, technology such as spinal cord stimulators receive the funding they deserve. Often overlooked in Roman’s remarkable story is the fact that, years ago, he lost his right leg. Today, however, Roman says he wouldn’t want it back—the new life he has built is too loaded with inspiration and desire, much of which he credits to his wife, who stood by him through his decade of darkness. Roman says it is just that sort of encouragement from parents and family that inspires a loved one to overcome daunting odds. “I can do anything I want,” Roman says. “I may have to do it a little bit differently and I may have to come up with a creative mechanism to do it, but I think that each of us has that ability to inspire ourselves. The point is that you can achieve emotionally no matter what your challenge is. With some hope and encouragement, it’s unbelievable.” Yes, Michael Roman still remembers the suicidal thoughts he once faced, the debt, the isolation, and the flood of medication, and the profound physical and emotional pain. But he also remembers adjusting his attitude to defeat his circumstances—a feat he says is ultimately up to the individual. “I can’t take that first step for you,” Roman says. “But I can promise that if you take that first step and look up, there will be hands held out to greet and guide you.” by Josh Pate raceagainstpain.com controlyourpain.com racingromanfilm.com

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Understanding how and why these mutations occur requires some basic sex education—yes, much like we got from our high school gym teachers.

Herein lies the problem. Most of the things that we create and use have been so significantly modified during the process of their production, that they cannot simply “go back” into the natural state of the Earth. Instead, they stick around and cause trouble. We know this as pollution.

An embryo is a recently fertilized egg, early in its quest to be born and grow into adulthood. As the embryo develops, genes influence the formation of its sex organs. Males grow testicles that produce and store sperm, while females develop ovaries that produce and store eggs. In the case of “intersex” fish, however, we can presume that the fish embryos are being mutated or warped as a result of exposure to chemicals which have been determined safe for human consumption or use (such as pharmaceuticals or some pesticides). It is believed that these chemicals may accumulate in the sediment at the bottom of the rivers where fish lay their eggs.

ith its unique composition and multitude of resources, the planet Earth allows us to manufacture virtually anything we need and innumerable things we don’t. And how do we dispose of such resources when we’re finished with them? We “trash” them in the only place that we can: our planet.

In 2010, the effects of pollution influence the air we breathe and taint the very water we drink. Much has been said and written about greenhouse gases, pesticides, heavy metals and other pollutants. But let’s address another cadre of pollutants on the list: endocrine disruptors. Endocrine disruptors (EDs) are a cumbersome list of chemicals and compounds that are imbibed or absorbed by animals via the water supply. They not only come from industrial processes, but also from our medicines, beauty products, and herbicides. EDs can affect animals’ lives in a variety of ways, and at a variety of developmental stages. An important element of human and animal life, the endocrine system secretes hormones in the blood stream that influence organs throughout the body. Pollutants that mimic these hormones, as EDs do, may in fact be causing mutations in several animal species. At the beginning of the new millennium, scientists discovered frogs with extra limbs and even male animals possessing ovaries. These types of mutations are curious and troubling, particularly in respect to reproductive organs, which are the most critical parts of the endocrine system. The discovery of “intersex” fish (males with immature female eggs in their testicles) has opened yet another Pandora’s Box of pollution. The Potomac River and its tributary, the Shenandoah River in Washington, DC and northern Virginia are most noted for such discoveries.

Exposure of fish eggs to such chemicals in sediment can disrupt normal sexual development, causing males to develop “oocytes” (immature eggs) in their testes. It is not likely, however, that any one contaminant acts alone as the culprit. Amazingly, despite having immature eggs in their testes, intersex males are still able to produce sperm and reproduce. As of yet, there do not seem to be cases of these male eggs combining with their own sperm to result in the formation of an embryo, though there are organisms in which this is the normal means of reproduction. These organisms, known as hermaphrodites, are comprised of both male and female sexual organs. Auto-fertilization of female eggs in the male testes would not work in fish or mammals, however, since the males in these groups don’t have the organs required to sustain an embryo. Fortunately, there is no solid evidence to suggest effects of endocrine disruptors on humans. Moreover, a relative few species are known to experience effects of EDs, and there is no reason to believe similar effects would occur in exposed humans. On the other hand, efforts to establish a link between human reproductive dysfunction and endocrine disruptors are hampered by technical difficulties—so effects on humans cannot be entirely excluded, either. by E. Thomas Chappell, MD

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Photo of Virginia Madsen by: Eddie Mills

Photo of Elaine Madsen by: Nancy Villere - CrushPhotoStudios.com

irginia Madsen is a Golden Globe- and Academy Award-nominated actress known for her work in Sideways, The Astronaut Farmer, and The Number 23. Her mother, writer-director Elaine Madsen, has a wide range of creative projects on her list of achievements, including a new book of poetry and an Emmy Award for Outstanding Documentary. In their new collaboration, I Know a Woman Like That, the mother-daughter duo join forces to take a close look at grace, age, vitality, and what it means to be a woman. ABILITY Magazineâ&#x20AC;&#x2122;s Chet Cooper and Nancy Villere caught up with the Madsens to discuss this ambitious and personal project. Chet Cooper: Your film does a nice job of making a viewer more aware of a relationship between women as they age and their degree of invisibility in society. And, in many ways, I see that parallel how we tend to address social understanding and awareness about disability. Elaine Madsen: Oh, yeah, I think thereâ&#x20AC;&#x2122;s an attitude towards age that treats it as a disability. But in reality, aging involves recognition of ABILITY 45

Virginia Madsen and Elaine Madsen during the filming of their film I Know a Woman Like That

abilities you didn’t know that you had, abilities that you have to find within yourself in order to deal with society. Bookshelves are filled with titles about how to stay young, and telling us all that there’s something wrong with not being young. But the purpose of this film, I think, is to show that the experience of aging can be wonderful, if you don’t get sucked into that mentality. Virginia Madsen: My mother’s level of activity, of productivity, was exactly why I thought a project like this would work. Originally, when we put the idea together, she had said, “I’m far too busy. I’m going to Holland, and then I’m going here and there and I’m writing my book.” But that’s really what it’s about. Elaine: One of the most important things at any age is finding how to stay engaged. It seems like some people get to a certain age and sort of sink into a kind of psychic rocking chair. Suddenly they are made to feel that their time is done and that it’s time to get off the stage. Our movie has 17 women in it who are all between the ages of 65 and 95, and every one of them is engaged in life in a particular way. Age is not inhibiting them. Cooper: Most of the people you interviewed seemed to like the fact that they were at the age that they were, and seemed happy with the wisdom they had acquired. 46

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Elaine: You know, I don’t think I’ve ever been so happy as I am now. At my age, there are all kinds of things you don’t have to battle anymore. That being said, we’re not glossing over the fact that there are changes in these people. One of the people we spoke with uses a walker, and we do feature people who have overcome cancer as well as some of the other things that come along with age. So we’re not glossing over the fact that these issues are a part of aging. But hopefully, we are advancing an attitude. Virginia: It’s universal. Inevitably, every single person we talked to about this project had said, “I know a woman like that. My mom’s like that, my grandma, my aunt, my wife, the lady down the block who’s out in the garden every day.” That’s what led us to our title: I Know a Woman Like That. We began to realize how farreaching this story is. It’s not just about my mother, but about women. What’s also interesting to me is that, in trying to find a throughline among the interviews, I realized that we never actually fully answer the question of what makes a woman “like that”: an active and happy and independent woman. But I think a commonality that exists among all of the women we spoke with is curiosity: a capability of remaining curious and adventurous at

Photos of, I Know a Woman Like That, by: Ryu Kodama

every age. Dorothy, one of the women we spoke with, has physical disabilities now. It’s harder for her to get around, yes, but her life remains adventurous and she continues to work and she continues to be curious about life. Cooper: One of the things that struck me was how many times the women in the film were talking about how sex is great. You just dove right into that subject matter, showing that there’s still life, no matter what the age might be. Elaine: Well, the usual sense, particularly among younger people, is that if you’re not perfect, if your body isn’t perfect and you’re not getting whistled at on the street, sex disappears. But it doesn’t, and I think intimacy is a thing you learn to value and to engage with over time. Intimacy is one of the richest things you can have in your life. Virginia: I think it would be really interesting to show the film at an elementary school or at a high school. Not a junior high, because we are all screwed up in junior high. (laughs) In junior high they’d probably just be like, “Eeew, old people!” But in elementary school and in high school, I think students would really be interested in these people we take a look at.

Cooper: It would be great to do a poll of these kids and see what they think after seeing the film. The media push so many expectations about youthfulness and beauty, especially on the young, so one is left to wonder how much of that sort of thing really influences the psyche. Virginia: Yeah, it’s pretty interesting, actually. There were five or six guys at the screening who were all late twenties and early thirties, and they loved the movie. My friend called me and said that the whole group of them was into it. She was like, “They won’t shut up about the movie.” And I guess these guys were never talking about the age of these women. They were talking about how smart these women were and how interesting and how passionate they were. Elaine: One girl, a teenager, came up to me at a screening and said, “I can’t wait to get old!” I don’t know how long she’ll feel that way, though, but I hope she takes away that there is plenty of life to live. Cooper: Plus, it’s worth mentioning that once you get to a certain age, you get all of those senior discounts. Elaine: (laughs) You know what? I’ll tell you, when I first moved to California, I was 55, and I was absolutely astounded that somebody considered me a senior ABILITY 47

Women “Like That” (l to r): Nancy Freedman, 89, is the author of numerous books, and was featured in O Magazine in December 2008. Gloria Steinem, 76, is a feminist activist, organizer, bestselling writer and lecturer. Steinem co-founded Ms. magazine. Lucille Borgan, 96, survived polio as a child, cancer as an adult, and a complete loss of vision in her left eye just a few years ago. Today she is the world’s oldest competitive waterskier.

citizen. But if people want to give me discounts, I don’t care. Nancy Villere: Elaine, what drove you to involve yourself in a project like this in the first place? Elaine: Well, filmmaking is really what I know. I won an Emmy for a documentary I did in the ’80s, and I used to be a director of marketing for a company in Chicago, so I had completely fallen in love with making films. When you shoot film in Chicago, everybody knows everybody and works together efficiently. That’s what that earlier documentary was really about: human beings and camaraderie, and it really was a testament to making films in Chicago. In developing both that documentary and this one, the process really came from following my nose, looking for people who would just be naturals. I also knew going into this project that there needed to be recognizable people in it in order for it to be marketable. Rita Moreno is one of the first people we’d approached. She hadn’t even met us, but she liked the idea of the project. She’s in her seventies and is as busy in her career as she has ever been. Still, I wanted most of the people we spoke with to be unknowns. That was my mantra going in. Cooper: You found some pretty incredible people. 48

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Elaine: We really did. Our criteria were that the person needed to be pretty active and functioning. The film doesn’t show a single photograph of what these people looked like when they were 20, because we’re not talking about what they were doing when they were 20. We’re talking about now. This is a “now” story. Virginia: Each of these women has a really powerful spirit, and I think that really provokes conversation. It gets people talking not only about issues of age and aging, but also about cultural issues: the male-female divide, what it is to be independent, things like that. And it gets us thinking about youth, because we know that youth is not just a physical thing. People can be youthful and be 102 years old at the same time. Cooper: Is marketing a project like this going to be a challenge? Virginia: We’ve just now begun the process of selling the film, actually. We have a sales rep and there are some more screenings coming up to start a buzz. Elaine: We recently did a screening in Chicago that was absolutely stunning. It was held at the Beverly Arts Center, which is a community venue, and the director there had seen our film at the Chicago Film Festival and asked us if we’d do a screening for her membership.

Photos of, I Know a Woman Like That, by: Ryu Kodama

The event was free and there was no publicity for it, but all 400 seats in the theater were filled. What was amazing was that the whole audience stood up when I came out for the Q&A. I have never had such an experience. I honestly did not know what to do. I just stood there as they applauded for a really long time, and then they asked some really wonderful questions. Women kept coming up to me afterwards and saying how good the film made them feel about themselves. And this was not an audience of eighty-year-old people—these were mostly women in their ’40s. Roger Ebert wrote about our film and said, “This film is transformative.” I sure treasure that. I also feel really blessed, as a mother, because all three of my children are now mature adults and have done with their lives what they chose to do, and that’s as great as any of the rest of it. Villere: Tell me about more about that documentary that won you an Emmy. Elaine: It was called Better Than It Has To Be. That came from the attitude the people of Chicago have: you do your job better than it has to be done. (laughs) Anyway, both Virginia and my son Michael are in that

documentary. Michael was a grip for a scene in a trade show, and there’s a casting session scene with Virginia working with a local casting director. The thing was, I was already in the business, in the marketing business in Chicago, and I wanted my kids to learn and grow and be whole people before they got thrown into that rejection routine. And so they’ve done okay. And so have I. Villere: Do you find that a lot of doors have opened in your career over time? Elaine: You know, I think my work is being taken very seriously now. Two and a half years ago, I published a book called The Texan and Dutch Gas, which was something I co-authored. It was about the energy revolution in Europe, and I know I probably wouldn’t have tried a book like that at a younger age. I think I’ve acquired skills as a writer and as a researcher over time that made that book possible. And just recently I had my first book of poetry published. I’ve been writing poetry since I was 17, so that has been very satisfying, to have that sort of work in print. I’ve written for lots of different venues. That’s what I’ve been doing all my life, writing and filmmaking. Everybody is a story. Every single person. I feel really blessed to have encountered so many. iknowawomanlikethat.com ABILITY 49

shape so I could win. But now...there’s no one to race against. I can’t win first place anymore, because to win first place, someone else always has to get second. But...I guess even if I can’t win, I do like skiing fast. Skiing is the only time I get to go fast anymore. So I will still ski today, just for fun. I ski through the race course eight times. Afterward, there is an awards ceremony where Mark gives out medals for each category—blind skiers, skiers with one arm, skiers in wheelchairs, skiers who drool and can’t talk right, skiers who walk funny and can’t move their left arm, and of course, three-trackers. Since I am the only three-tracker, I get eight gold medals. After people clap for me, I tell Mom and Dad the eight medals are stupid since I was last place, and they say, no, I was first place, and I say, no, I was last place, and we keep arguing until an old man walks over and puts his hand on my shoulder. “Son, I watched you ski today,” he says. “Okay,” I say. “I want to tell you something.” “Okay.” He looks at Mom and Dad, and then back at me. “I used to coach the United States Paralympic ski team. Have you ever heard of that?” “No, sir,” I say. “The Paralympics is the Olympics for people with disabilities,” he says. “Ski racing is one of the sports in the Paralympics. Like I said, I saw you ski today, and I want you to know that you have great potential.”

FROM CHAPTER 10: At the race, Mark says that I’ll be competing in a category called “Three-Trackers,” since I make three tracks in the snow with my two outriggers and one ski. “How many other three-trackers are there in the race?” I ask. “You’re the only one,” he says. “So...who am I racing against?” “The clock,” he says. The clock? That doesn’t make sense! A clock is not a three-tracker, and it doesn’t even ski. I can’t believe this! I spent this whole week, this whole week, looking forward to winning today. I even did push-ups to get in 50

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I look down from his face to his jacket, which is shiny, has a zipper down the middle and is red, white, and blue. On his chest, right in the middle, there are three big patches sewn on. They spell “USA.” The patches are big and white and strong looking. I look down from his jacket to his pants, and I see that they are made out of the same red, white, and blue shiny material, and they have the same USA patches, just smaller, near the top of the left pant leg. “Did you—did you get that jacket at the Paralympics?” I ask. “Yes,” he says. “What about your pants?”

“Yes. And a hat and a few other things, too. Whole uniform, I got there.”

Coffi’dense. “Um . . . okay,” I say. “Well, thanks!”

From skiing? A uniform? Really? Could I wear it to church? “If I went to the Paralympics to ski race,” I ask, “do you think I would get a whole uniform like that?” “Of course,” he says, patting me on the back. “Of course.” Then he winks at me, nods to Mom and Dad, and walks away before I can ask him where I sign up for the Paralympics, because that’s what I want to do as soon as I finish this chemotherapy. I want to finish chemo, let my hair grow back, then sign up for the Paralympics and get a uniform. It will be even better than the uniform Aaron wore to church, because his is just plain green. Mine will have three different colors and it will say “USA” on it. And it will be shinier than his, too. If I wear my uniform to church, everyone will want to be friends with me and Keisha will want to kiss me, even though she moved away, so I will have to mail her a picture of it. But I will get the uniform and I will win ski races, maybe even ski races that have other three-trackers in them so I don’t get first place and last place at the same time like I did today. Then my life will be perfect.

“You got it, Smoshes.” That’s what he always calls me: Smoshes. I guess because it rhymes with Josh...sort of. Ralph invents nicknames for everyone—everyone. Even if he’s never going to talk to them again. Like, if you just met him on the ski lift, he’ll have a nickname made up for you by the time you get off at the top of the mountain. Our seats for the Opening Ceremony are up on the top row—but they’re free, so I’m not complaining—and rain and snow falls on us and the 50,000 other people in the Olympic (now Paralympic) stadium during the ceremony. People stare at Ralph and me. We are two guys of highly contrasting size and skin color wearing matching blue plastic ponchos and standing up in the very top row, each on our one leg, hopping and hollering while everyone around us huddles together to keep warm. When the host team, the US team, finally marches into the stadium—the climax, after all the other countries—that’s when people really start staring at Ralph and me. “That’s us in four years!” I yell.

FROM CHAPTER 25:

“Hell yeah, Smoshes!”

Paul DiBello, our double-amputee team director, didn’t actually buy us tickets for the 2002 Paralympic Opening Ceremony. He just arranged for the other coaches to bring us to Salt Lake City today. If we want to watch the event itself, we’re on our own.

“Woooooooooo!”

So it’s a good thing I’m friends with Ralph, because he has no problem getting a ticket for himself and for me. Free. I ask him how he did this.

“2006 here we come!”

“Confidence,” he says.

We embrace, hopping up and down on our single legs. “Turino, baby!”

Neither of us is wearing a prosthesis. Ralph never wears one. I wear mine about half the time. It’s good to wear for social occasions, and times when I have to carry ski ABILITY 51

equipment. But when I know I will have to do a lot of walking—like I am tonight in Salt Lake—I stick with crutches, because they’re much easier to use. Before Salt Lake, Ralph and I were at a World Cup race in Canada, where we came in second to last and last, respectively. Not too good, but about average for my season so far. It’s been almost three months since I finished high school and moved to Colorado. I’ve been in four or five races, all with disappointing results, even though I train six days a week. Whenever I get on the race course, as I come down the mountain trying to remember all the information and tips and techniques for ski racing that I’ve stuffed in my brain, my body freezes and I lose faith in myself. But being in this stadium with all these cheering people and fireworks and music and teams of athletes marching in, I can forget about the race results and remember the reason I moved out west in the first place: down there on the field, those athletes are wearing the uniform of their home nations. When the ceremonies end and the stadium starts to clear out, I feel a sense of purpose, as if my muscles are eager to engage in some kind of movement. I need some time alone, so I tell Ralph I want to go explore. We agree to meet later in the evening. I walk down the cement stairs, still wet—crutches, leg, crutches, leguntil I am on the ground level, looking down a tunnel that leads into brightness. The brightness is so complete that the tunnel itself, its two walls, floor, ceiling, blend together like a black hole. This is where the athletes—the Paralympians— walked an hour ago. I think about this. I want to walk there, too. I want to know how it feels. But there is a pair of guards at the end of the tunnel, silhouetted in the light. Do they have guns? Can they arrest me? I hear Mom in my mind, telling me not to risk it—it will go on your permanent record, you won’t get into college, you will work at McDonald’s the rest of your life—and then I hear something else, a single word: coffi’dense. So I march through the tunnel and in between the security guards—“Evening, gentlemen”—give them a nod. They nod back. And then I’m on the field, walking the same lap around the stadium that the Paralympians just did. The rain has stopped, but there are still shallow pools of water everywhere, all of them just beginning to freeze over. The stadium is quiet except for the sound of the Paralympic torch burning a few stories up, making a sound like a flag whipping and waving in a gusty wind. I walk onto the center stage and look at tens of thousands of people, including Mom and Dad and Matt, and I am wearing a red-white-and-blue uniform. I wave to the crowd. I think about everything I’ve done to get here, to make the Paralympic team, about all the times I’ve been at the gym and I’ve pushed my leg beyond exhaustion, and 52

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about all the hours I’ve spent reading books about skiing, about how there are days when I wish I were back home with my family instead of being 17 years old, living in Colorado with teammates I don’t really know. I think about all this, and about how it’s all worth it now because I am standing in front of this roaring crowd, knowing that I did it, I finished, I made it, I was a cause and this is the effect and therefore there is order and meaning to the universe. And the best part is, since I’ve made the Paralympics and since I’ve gotten this uniform, from now on, nothing else matters. No matter what happens to me, no matter how disappointing or sad things get, no matter if the rest of my life is a failure, no matter if people don’t like me, no matter if I never get a hot girlfriend, I can always look back and say to myself, “It doesn’t matter because I was a Paralympian. I represented my country. I made the team.” “Can I take your picture?” The question snaps me out of my daydream and I find myself standing in front of 50,000 empty seats. “What?” I say. “Can I take a picture of you standing on that stage?” The voice comes from below me, on the ground level, where I see a man wearing a laminated badge around his neck and a plain black baseball cap on his head. A nylon bag hangs from his shoulder. He holds a camera with both hands. “Sorry, I’m not competing in the games,” I say. I’m not even supposed to be standing here. “That’s okay,” he says, kneeling down so the torch is framed behind me. “But hopefully I’ll be there in 2006,” I add. “So...um...you just want me here like this?” “That’s perfect.” I clench my jaw, squint a little. This photo will win awards. “Tell you what,” he says, shutter clicking. “If you make it in 2006, I’ll take your picture there, too.” I smile, despite my best efforts at jaw-clenching and eye-squinting. I just can’t help it. “It’s a deal,” I say. “I’ll be there.” joshsundquist.com Reprinted by arrangement with Viking, a member of Penguin Group (USA) Inc., from Just Don’t Fall Copyright 2010 by Josh Sundquist

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r. Marc Wallack was a celebrated surgical oncologist and avid marathoner with a vibrant career. Then, unexpected symptoms of angina suddenly turned doctor into patient and changed his life and future forever. With the help of his wife, Fox News reporter Jamie Colby, Wallack has documented his experiences in recovery in Back to Life After a Heart Crisis, aiming to help patients navigate their experiences by melding medical knowledge with intimate experience and by emphasizing the role of a supportive caregiver. ABILITY Magazine’s Chet Cooper visited with the couple about their work, their marriage, and recovery. Cooper: When did you get the idea to write a book about your experience? Marc Wallack, MD: About three weeks after my surgery, I read Lance Armstrong’s book, It’s Not About the Bike, in which he basically recounted being diagnosed with cancer, undergoing surgery, and then having to go into intensive chemotherapy. He wrote that he began to recognize that if he survived, he had to get back on his bike and ride again. So that was one of my motivating factors: I wanted to write about how I was doing as I went through the different stages of my recovery. Cooper: How did you pull Jamie into this? Wallack: Jamie was involved right from the beginning. I had been running for four days in a row, training for the New York City Marathon. About seven minutes into every run, I was getting what I thought was just acid reflux. In actuality, it was angina. Each time it happened, though, I would make excuses for what it was and why it was happening. And with each run, I would just take more and more antacids or Xantac or Prevacid, trying to get this under control. But sure enough, every day at about seven minutes into the run, I would get this sharp pain in my chest. It didn’t radiate, though, and I didn’t really worry about it. By the fifth day of this, I had convinced myself that the reason I was getting the pain was because I was running indoors and not outdoors. I began to change my routine, running uphill from our house and into Central Park. But as I reached the park, the pain started again—and this time it radiated into my chin. I realized then that I had a decision to make. And Chet, I almost didn’t make the right decision. I almost decided, “The hell with it, this is nothing. I’m going to continue the run.” Had I done that, I would not be here to have this discussion. Fortunately, I stopped running. The very next day, I went to get a stress test and I flunked it for the first time. I brought Jamie in and she was there with me, so she can probably tell the rest better than I can. Jamie Colby: Well, at the time of all of this, I was working as an anchor on a CBS show called Up to the

Minute. When Marc came in from his run that day, I was leaving for a Sunday bike ride after having gotten off of work, and Marc said to me, “You know, running didn’t feel so good, maybe I’ll go on the bike ride with you.” I didn’t know that he was having any kind of chest pain. He looked good. But since he wasn’t feeling well, I said, “Why don’t you just lie down and relax? It’s Sunday. I’ll be back in an hour.” So I left. He called his cardiologist while I was out of the house, and the next day he went for the stress test. But as I got off the air the next morning, he called me in a very weak, quiet, child-like voice and said, “I need you to come down right away. They won’t let me walk the couple of blocks back to the hospital.” So I really had to become an instant advocate. We were a young, active, healthy couple. Marc’s a marathoner and I’m in shape. We had our honeymoon at the Canyon Ranch. We were all about health, and at that time in our lives, the least likely thing for us to deal with was something like this. We both had to adapt to this. I took a field trip to the cardiac intensive care unit the day before Marc’s surgery, just to see what someone in his situation might look like and to prepare myself for the future. I think it really takes two to make a cardiac comeback—whether that other person is your friend, your advocate, your lover, or even just someone to take note of what’s going on, to explain it to you, because chances are good you might not hear everything you need to hear. Cooper: I love that your book includes pull-out advice sheets for caregivers. It seems that, even though the book is specific to your situation, it can really be useful to people who are going through other types of surgeries as well. Colby: That’s the response we’ve gotten. We just got a note yesterday from a surgeon who’s providing our book for every surgeon in his department. You can only really know these experiences if you’ve gone through them. Marc isn’t just a physician, he’s also been the guy lying on the table in that hospital gown and looking at the ceiling. In a way, he can tell you what even your surgeon might not know how to tell you. I hope the book gives people good ideas and strength, and I hope it also helps them dispel their own fear of speaking up when they have questions or are scared. The morning of Marc’s surgery, this big guy came in and grunted that I had to leave the room. I had just seen the movie The Green Mile, by the way, so I guess I was feeling a little scared in general. Anyway, I said “Okay,” and as I left the room, I heard the noise of a razor going on and on and on. The guy was shaving Marc. There was no reason why I needed to leave the room, you know? Even simply being at the other end of the room with the curtain closed between us would have been ABILITY 55

enough to allow Marc and myself some peace of mind. Cooper: Just to draw that strength from each other in the room. Wallack: One of the things that I always emphasize to cancer patients I take care of is that it really is necessary to have somebody with you who is your advocate. Because once you hear someone say that you had angina or a heart attack or that you need surgery or that you have cancer, your mind shuts off. In that moment, there is no question that you are intelligent enough to ask. Because when you hear diagnoses like that, the first thing you think is, “I’m gonna die.” The curtain comes down. So it’s important to have someone there when it happens, whether it’s a friend or a relative or a significant other. Colby: And some of the people who were closest to us didn’t really want to be around us anymore. Sometimes I’d say, “I’m really trying to get Marc out of the house. What do you think about us all going out for dinner together?” And some people would be like, “You know what? That would be so depressing for us right now.” So you find yourself dealing with that aspect, too. Alienation. Even at the hospital, some people were telling Marc he couldn’t be viewed in the leadership capacity he had held. I know that a lot of people who get sick like Marc did end up being alone. So I really wanted people to see that maybe we are the faces of the people that give strength. Cooper: Can you talk a little about that, Marc? The concerns the hospital had about having you in a leadership capacity? Wallack: I was chief of surgery at a major institution, and I had essentially been recruited from the outside to take a hospital and bring it into the now—which, at the time of my hiring, was the early 1990s. Obviously, a job like that is totally consuming. I was organizing the operating room, organizing surgery, developing a practice, organizing the medical residents to teach them how to learn, organizing medical students, sustaining a relationship with the medical school, developing relationships with all of the other physicians who were both inside the department of surgery and outside of it. And I was a Connecticut Yankee in King Arthur’s court. I was the guy brought in from the outside, so I was always going to be an invited guest. So expectations were high. And any time you are less than what is expected, once someone sees a weakness, the game changes. Maybe in my case they started to feel that I wasn’t going to live too long, that I wasn’t as strong as I once was. Maybe I wouldn’t be capable of running the department the way I needed to. And so the people who were there who wanted my job ultimately 56

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began to rise up and began to get ready to take some shots. I think that’s human nature, no matter how many friends you have at work. Plus, people in leadership positions rarely make friends at work because their responsibility is making decisions, and friendships can compromise those decisions. Cooper: And you were operated on in the very hospital where you were a leader. Wallack: Yes. So, naturally, there was this flood of more information than anybody needed to know. If I had had my operation at Cornell or Columbia, none of my coworkers would have known anything more than that I had had open-heart surgery. But that wasn’t the case at all. Colby: And the level of performance that Marc had given at the hospital prior to his health problems was so superb that no one else at the time was right for the job. The position was untouchable. Wallack: Anyway, when I got back to my life after surgery, I knew that if I couldn’t run, I couldn’t live. I knew that in order for me to be able to run, to get back to the kind of person I wanted to be inside, I would have to do some intense rehab. So I did. That level of rehab took two hours out of my day, and it would leave me so tired that I would have to take naps in the middle of the day on a pretty frequent basis. But there was nobody that I could explain this to. I had told human resources that this regimen is what I needed to do, thinking that maybe that sort of disclosure would provide some protection, but that was not the response I got. Colby: It almost worked in reverse. It blew their minds. When Marc’s coworkers saw that he had gotten out of the hospital on the third day after a quadruple bypass, and that he had come back to work within six weeks and was also juggling rehab, they flipped out. They couldn’t understand why he was able to do it and why it was worth making a commitment to him. I suppose they thought he should be a couch potato for the rest of his life. They really lashed out at him for trying to get back to where he was. Wallack: And the worst part was, when I ran the marathon, several individuals came into my office and basically said to me that my judgment and capabilities were impaired because I had run the marathon. Can you imagine? This should have been a celebratory event, but instead it was given a negative spin because my coworkers actually didn’t want me to recover. Cooper: Maybe all physicians should go through some major surgery so they have a better understanding of what it’s like.

Mady comforting Marc after surgery

Wallack: Oh, man, you have no idea. There is no question that it changed my approach in taking care of patients. I suddenly understood what kind of pain some of my patients were going through, both physical and mental, in a very real way. I knew how to provide for their pain. I knew medication-wise what they needed. And I was much more empathetic. It made me a better physician.

you were a little bit out there, but it could have been credible.

Cooper: I’ve interviewed many people who have acquired a major health condition or disability who say the experience has awakened in them so many new ways of looking at life, of understanding the value of life and the value of themselves and their ability. The challenge, though, is getting people to understand these awakenings without going through the specific experience.

Cooper: Yeah, I noticed that in the book, you actually listed movies you enjoyed. I thought that was an interesting element.

Wallack: Right. I don’t know the answer to that, I really don’t. But I’m hoping that the book that Jamie and I wrote can help bridge some of that gap. Even as someone who has experienced these changes and these social or physical challenges, there are times that I forget them. And then I have to come back and try to get myself centered. Because I’m still alive. I should be dead, to be very honest with you. If I had run another 20 yards, they would have found me at the edge of Central Park and they wouldn’t have been able to resuscitate me.

Colby: You know what’s interesting, Chet? Before this whole experience, Marc wasn’t funny before. He had no comedic timing, he didn’t know how to tell a joke. And yet humor played such a tremendously huge part in his recovery.

Wallack: You know something? Before this whole experience happened, I watched a lot of dramatic, heavy movies—stuff that had to do with gunplay or whatever, because it would excite me or charge me up. But while I was going through my recovery, I couldn’t handle any movies that had anything to do with death. I moved over to romantic comedies, mostly. Colby: Tell him about Marley and Me. Wallack: Oh, my God, Marley and Me. That one is good for at least six boxes of tissue.

Cooper: That would’ve made for a pretty awkward interview.

Colby: Our dog Maddie was a really special part of Marc’s health and wellness. Some of the things she did would just blow our minds. Three weeks after I had laid Marc on the couch in some kind of Oxycontin fog, Maddie got up onto his chest and laid herself across his incision. She had never done that before.

Wallack: (laughs) Well, maybe I could have sent this all to Jamie telepathically. Your readers would have said

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migraines. Somehow the dog knows these things. So when Marc saw Marley and Me, he was inconsolable. Cooper: Good thing you had some medication around. Wallack:(laughs) Right. Cooper: Marc, when you’re dealing with a patient who uses drugs to manage pain, and you know the patient will not live beyond a certain time period, why is there still such a concern about getting the patient addicted on the medication? Shouldn’t the patient be allowed to use as much as he likes at that point, if he is not likely to survive anyway? Wallack: That’s a good question, and the paradigm for dealing with that kind of a situation is slowly shifting. When I was in my residency, in my first years of practice, we all had the same question that you do. But in respect to my patients, I really didn’t understand the importance of making sure that they were comfortable in their last days, because I still had hope they’d come through the other side of the experience all right. In my mind, I was some kind of savior, so why would I drug the people I intended to save? But realistically, when we’re dealing with patients with advanced cancer, the question eventually becomes one of dignity. And dignity, for me, involves being able to keep them comfortable with moderate medication. Today, for patients with terminal cancer, we provide a pain management service in our hospital. But I can totally understand what you’re saying. Colby: I think Marc’s own experience with his health 58

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has helped him realize there is a big difference in treating physical pain and emotional pain. He’s better now with figuring out if a patient’s pain is physical or psychological, which I think is a big victory. Cooper: Your book also addresses issues of depression and post-traumatic stress disorder, which is not something most people think about when they think about surgery. Colby: To be brutally honest, Chet, there remains such a stigma about depression, and Marc experienced some of that himself. People would say, “We don’t want him in our hospital. He’s depressive. He’ll depress us. He won’t be able to handle the pressure.” Wallack: I went through it, yes, and the depression was very severe. A lot of crying. I spent the first six weeks at home, and I couldn’t even talk on the phone, because when I tried, when I said hello, after that I started to cry. Obviously, my appetite decreased immensely, and I went down to about 135 pounds, where before I was about 150, so it was a pretty severe change. This was all due to feeling like I was having my legs cut out from under me at a time in my life when I didn’t expect it. Colby: You know what restored life for Marc? Running again. Running is such a huge part of who he is and his strength and his inner core. And his post-traumatic stress came into play when he ran back into Central Park for the first time. On top of that, Marc had people at work and in his daily life treating him like he couldn’t be more than he was. But every patient, I imagine, feels somewhat diminished

initially. And it’s really important to find something in your life, something physical, to help you overcome those feelings, not only to prove to yourself that you’re alive, but to show everybody else around you that you are. But ultimately it cost Marc his job. I don’t know what was worse for his coworkers: that he got sick, or that he got better.

were blessed enough to have Marc here and to have made it work. But it’s very hard.

Cooper: I interviewed Christopher Reeve several times, and one of the last times I met him, he was on the show The Practice. He was not only acting, but directing that part as well. So he got back to a place to where he was able to do what he had always done. He was at a place where he felt empowered.

Wallack: Absolutely. That, I think, is a really critical point. I tell my residents and my medical students that in their practices going forward, they’re going to have 90-year-old patients come in who are going to ask for elective surgery and expect to come out of it okay because they don’t expect to die at 91. It’s really important to be aware of these changes.

Wallack: A very good example. Colby: Not to be too out there, but Marc and I have discussed whether an emotional trauma can maybe accelerate disease, and he does think that maybe there is a connection. We have some statistics in the book, too, that caregivers end up oftentimes developing heart disease and other illnesses because of the stress. I truly believe that Dana Reeve, having gone through what she did with her husband, and having watched someone she loved so much go through so much, may have gotten sick from a broken heart, at some level. It’s so traumatic for a caregiver to watch someone she loves—especially someone with Christopher Reeve’s kind of fighting spirit—lose. I feel really lucky that we

Cooper: And today caregivers are becoming even more important, especially as baby boomers retire and deal with their own parents. As medicine actually gets better, people will be living longer with more illness.

Also, in respect to changes in health care policies, we can expect to see a whole other population of insured patients who will collectively put a tremendous weight on the medical complex. It used to be that end-of-life care was being given at maybe ages 75 to 80. But there’s good reason to think it may now extend so that elective care might go until somebody is 90, 95. Nobody’s talking about this, and I’m not sure anybody’s even bringing it up, but it’s obviously a big issue. Colby: Well, in our case, we’re both just really thankful God gave us some more time together, because we almost didn’t get it at all. backtolifethebook.com

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ACROSS 1 ABILITY ___ : building homes for low income families 4 Author of “Get off Your Knees: A Story of Faith, Courage, and Determination,” John ____ 10 Authentic 11 Friend in France 12 Actor from “The Young and the Restless” who is supporting the MS Society, Shemar ____ 14 Actor with Morgan Freeman about South Africa 17 Very large size of clothing 19 “Boyz N the Hood” actress, first name 21 Ex-GI 23 Well-liked 24 First name of the man who brought about freedom for a nation by peaceful protest 26 Lord of the Rings good guy 29 “To __, with love” anti racial discrimination film 30 Catch on 31 Spill the beans 34 Creator of “Deadwood” featuring a woman with cerebral palsy, David ___ 36 Wall is one, Main is another 37 Sooners’ locale 38 Passport, license, e.g. 40 Andes’ look-alike 42 Greeting 43 Junkie 45 Frolicsome 48 Tell-___ memoir 49 Organization enforcing laws prohibiting discrimination in hiring, abbr. 50 “Hollywoodland” star, Affleck 51 “A man who ____ to waste one hour of time has not discovered the value of life” Charles Darwin 53 The man who abolished slavery, for short 55 New ball game taking off (2 words) 59 West end? 61 Org.that goes where no man has gone before 62 Expression of delight 63 Bar order 64 Senior member 65 Wall Street position

DOWN 1 Meet (2 words) 2 The start of a triathlon contest 3 Plans for the future 4 Military term: right arm, abbr. 5 Outdated 6 School of thought 7 Logical 8 Russian river 9 Prevent 13 Newport, state 15 Prank 16 Race track shape 18 Non-profit started by surfer Jesse Billauer (3 words) 20 Daniel Day-Lewis role in “My Left Foot” (2 words) 22 “Here is the ___ to find if your mission in life is finished. If you are alive, it isn’t. “ Richard Bach 25 Line up the shot 27 __ Mans car race 28 Ray Charles’ state of origin 32 Stage name intro 33 Jest with 35 Shakespearean prince 36 Mole 39 Unearth, with up 41 Squiggy in “Laverne and Shirley,” David ____ 42 Time for eggnog 44 “No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new _____ for the human spirit.” Helen Keller 45 Cure-all 46 Director of “Dumb and Dumber” and keynote speaker at the 2009 Hollywood Disabilities Forum, Peter ____ 47 “As long as you derive inner ___ and comfort from anything, keep it” (Gandhi) 52 Starbucks muffin 54 “___ here long?” 56 Lennon’s lady 57 Compass point 58 Chess abbreviation 60 __ publica 63 “We’re in this love together” singer, Jarreau answers on page 62

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