ABILITY Magazine - Peri Gilpin by ABILITY Magazine

PERI GILPIN

JUNE/JULY

THE VOICE OF OVER 50 MILLION AMERICANS

JUNE/JULY VOLUME 2010

$4.99 Volume 2010 PERI GILPIN

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

SENATOR HARKIN — Remembering Eunice Kennedy

ASHLEY’S COLUMN — Perfecting My Poker Face

E DITORS

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

HUMOR — I’m Okay, You’re Okay

BLUE CROSS — Protecting Our Patients

DAVID RADCLIFF — Still Standing (Kind Of)

ADVOCACY AWARD — Lacy’s Legacy

JUSTIN DART — Disability Pioneer Continues to “Lead On”

CELEBRATING THE ADA — Reflections From Tom Harkin

ADA CROSSWORD PUZZLE — Now With More Puzzle!

METHAMPHETAMINE — Making it Crystal Clear

BORDERLINE PERSONALITY — Stop Walking on Eggshells

ABILITY AWARDS — We Like You, We Really Like You

IRAQ AND BACK — Wounded Warriors Revisit the Past

SELF-DEFENSE CLINIC — The Best Offense

MS DRUG — AMPYRA: A New Gait For Independence

PERI GILPIN — Sitcoms, Sarcoma and Stewardship

SPUD — Not Exactly Small Potatoes

DIRECTOR OF BUSINESS AFFAIRS

RANDY PIERCE — The Blind Leading Himself

MARKETING/PROMOTIONS

FULLER CENTER — Volunteers With Disabilities

Paralympic Games Beijing

Extremity Games

Peri Gilpin p. 44

Music Within

Return to Iraq p. 36

Jeff Charlebois George Covington, JD Gene Feldman, JD

H EALTH E DITORS

Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING W RITERS

Dart Puppet p. 20

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

W EB E DITOR

Mary Shafizadeh Joey Travolta p. 52

G RAPHIC A RT / I LLUSTRATION Scott Johnson Guy Uesugi

ABILITY’s Crossword Puzzle

P HOTOGRAPHY

Nancy Villere— CrushPhotoStudios.com ABC Family

T RANSCRIPTIONIST Sandy Grabowski Wounded Warriors p. 36

John Noble, JD

Liz Angeles Malia Hilliard Andrew Spielberg

NEWSSTAND CIRCULATION

CROSSWORD PUZZLE AND EVENTS & CONFERENCES

John Cappello Ashley Fiolek p. 8

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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 Peri Gilpin June/July Printed in U.S.A.

EDITORIAL

editorial@abilitymagazine.com

ABILITYMAGAZINE.COM

NON-PROFITS

ABILITY Awareness/Fuller Center Habitat for Humanity

PUBLISHER

Chet Cooper

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

to ensure that millions of individuals with intellectual disabilities have greater opportunities for community participation and inclusive education, as well as better access to appropriate health care. Its aim, more broadly, is simply to make it possible for people with intellectual disabilities to experience life as others do, free of discrimination and exclusion. The Special Olympics gives athletes with intellectual disabilities the tools they need in order to be included in society, and gives society the understanding and tools it needs in order to better include people with disabilities.

WE NEED THE EUNICE KENNEDY SHRIVER ACT Dear ABILITY readers, This summer, we are celebrating the 20th anniversary of the Americans with Disabilities Act. Despite enormous progress over the last two decades, individuals with intellectual disabilities still face challenges on many fronts. They have health problems that many physicians are reluctant to address. In addition, by and large, individuals with intellectual disabilities have few opportunities for exercise and other physical activity. Too often, they continue to be relegated to the fringes of society and denied opportunities for employment. That is why I recently introduced in the Senate the Eunice Kennedy Shriver Act. This important legislation would reauthorize the Special Olympics Sports and Empowerment Act, authorize the Best Buddies program and provide support for additional efforts to include individuals with intellectual disabilities in the fabric of American life. As we all know, the Special Olympics program is respected around the world as a model and leader in using sports to end the isolation and stigmatization of individuals with intellectual disabilities. For more than 40 years, the Special Olympics has encouraged skill development, sharing, courage and self-confidence through year-round sports training and athletic competition for children and adults with intellectual disabilities. Through its programs, the Special Olympics has helped 6

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The genius of the Special Olympics is that it uses sports to help integrate people with intellectual disabilities into our broader society. The Special Olympics provides an ideal world for individuals with intellectual disabilities—a world that accents abilities, not disabilities. Athletes have the opportunity to compete and achieve on a level playing field on which success is determined by the athlete’s hard work, talent, determination and courage. In 2006, my state of Iowa hosted the first USA National Summer Games. Thousands of athletes, volunteers, coaches and families attended our Games, in addition to 30,000 fans and spectators. Ames, IA, was transformed into an Olympic Village. It was a thrilling experience that I will never forget. More importantly, the Special Olympics runs a number of associated programs that I strongly support, including Project UNIFY—which provides inclusive sport opportunities in which individuals with and without disabilities play together on the same team—and Healthy Athletes, which allows participants to receive a variety of important health screenings, assessments and referrals. Similarly, the Best Buddies program is dedicated to ending the social isolation of people with intellectual disabilities by promoting peer support and friendships with their peers who do not have disabilities. The aim is to increase the self-esteem, confidence and abilities of people with and without intellectual disabilities. Of equal importance, the Best Buddies program provides opportunities for integrated employment for individuals with intellectual disabilities. Programs such as these help people to overcome their fear and ignorance of individuals with intellectual disabilities. They also empower individuals with disabilities to be competitors and leaders and transform communities by changing attitudes about people with intellectual disabilities.

My proposed legislation also authorizes university-based grants to support research, training and technical assistance. The aim is to improve and advance opportunities for individuals with intellectual disabilities to fully participate in inclusive sports, recreation and other community activities. This new bill is named in honor of Eunice Kennedy Shriver, who devoted her life to improving the lives of people with intellectual disabilities around the world. Mrs. Shriver founded and fostered the development of the Special Olympics and Best Buddies, both of which celebrate the possibilities of a world where all people, including those with disabilities, have meaningful opportunities for participation and inclusion. Passage of the Eunice Kennedy Shriver Act would benefit millions of people with intellectual disabilities. It also would be a richly deserved tribute to a great American and a passionate advocate for people with disabilities. Sincerely,

Senator Tom Harkin harkin.senate.gov Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee

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he last couple of months have been pretty busy ones for me. I have been getting ready for my season to start while launching my new book, Kicking Up Dirt. As if that weren’t enough, I’ve also had to fulfill some sponsorship agreements. It is never dull around my house! I recently gave a motivational speech to the Arkansas School for the Deaf using my P3 Purple Notebook. It was really cool. A representative from Purple came to my house and set up my notebook for me. The school set up a big screen in an auditorium and I spoke to the students from my living room in Florida! It felt a little weird at first to look at my laptop and see a bunch of people staring back at me, but the whole experience turned out to be pretty fun! After my presentation, I received a box of gifts and a big thank you from the students. I really enjoyed those kids. At the end of April, my family and I flew up to the Harper Collins offices in New York for the release of Kicking Up Dirt. It was a whirlwind trip! I did two interviews with Fox News, an interview with Guidepost, and another with a Sirius Radio talk show. I talked with Women’s Health Magazine, did a Twitter interview with the Women’s Sports Foundation, and also had a book signing at the Harper Collins offices where I finally got the chance to meet everyone who had worked with me on the book.

While we were bouncing around New York, the Red Bull crew held a poker party—a big, fun bash for Red Bull athletes. Brittany and I were supposed to just hang out for a while and watch my dad play poker with everybody. But to my surprise, everyone talked me into playing poker instead of my dad! I had never played poker before and had no idea what I was doing. Fortunately Brian Vickers, a Red Bull NASCAR driver, helped me out a little bit. When I first started playing, I really just wanted to hurry up and bail out and go back to the hotel room. A couple of times, I went “all in” just to get out of the game, but then I started to win! I decided I was having a good time after all, and was determined to keep playing for as long as I could! As I played, the tables of players kept getting smaller and smaller until, pretty soon, I was down to the last table. It was just me facing off against a couple of other people. In the end, I wound up winning the whole tournament! No one could believe it, including me! I guess it’s true what they say about beginner’s luck!

Brittany Sharp, a friend of mine from Michigan, came to hang out with me in the few moments when we had some free time. A film crew from Fuel TV followed us around New York City to get some footage for an upcoming show. Believe me, it’s crazy to have a film crew following you around and telling you to act naturally! The crew was a fun group of guys, though, so it wasn’t all bad. I had been to New York a few times, but this trip marked my friend’s and my brother’s first visit. My brother fell in love with the F.A.O. Schwartz toy store and must’ve bought about $300 worth of Legos. 8

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ashleyfiolek.com

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t’s hard to believe that 20 years have passed since the ADA was put into law. I remember the day when George Bush signed the legislation. Wow, that was 20 years ago? This milestone gave me cause to look back on how far I’ve come as a person with a disability and what I’ve learned. Life teaches us many things, and hopefully we grow (I know my belly has). Having gone through the majority of life’s journey with a disability, I’ve gained some important insights I’d like to share.

USE WHAT YOU GOT Yeah, we all know it sometimes sucks to have a disability, but come on, I’d be a fool if I didn’t admit there are some perks. The most obvious one is the handicapped parking spot, but we all know about that, so I don’t want to beat a dead horse. What I like most about having a disability is, I don’t have to do anything and people still find me inspiring. “My God, you’re unbelievable the 10

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way you, you, you… talk!” My reply, “Lady, you think that’s amazing, you should see me brush my teeth. It’s breathtaking, not to mention minty fresh.” If you’re a person with a disability, there are plenty of times when you can easily play the sympathy card. I always like to use the old “my spasms are acting up” routine. “No, I wish I could watch your kid for you, but it’s my legs—they’re going crazy. I don’t want to kick your brat in the face by accident.” But be careful not to abuse this power, or when you really do need help it won’t be available, because you pissed God off by taking advantage of your disability and He just might teach you a lesson by healing you. Use your disability wisely, my little squirrels. That said, I do use my disability to get out of things I hate doing. “Yeah, I wish I could write you a check for the landscaping you did on my front yard but, unfortunately, my hand is cramping up. Damn disability. How

‘bout we call it even?” My disability has even gotten me out of jury duty—which is a good thing, because I tend to think everyone is guilty (except Heidi Fleiss, who was railroaded for offering a noble service to appreciative men). Want another perk? Two words: amusement parks. When you use a wheelchair, you get moved right to the front of those long lines. To see the look on the disgruntled line-waiters’ faces as they wish, “Why? Why can’t I be crippled?” (Little do those fools know that, deep down, we are all crippled in some way.) As people often request my services, I have made a lot of extra money allowing families to bring me to Disneyland just to help them bypass the exhausting wait in line. (Incidentally, I’m listed in the phone book under RENT-A-GIMP.) It’s not easy out there in the cold world, which is why I suggest taking advantage of your disadvantage. I would really hate for you to do more than you really need to. If this bothers you, just think about the snakes who park in our handicap spots. Angry yet? That’s what I’m talking about.

A SENSE OF HUMOR MAKES SENSE One of the greatest qualities a human being can possess is a sense of humor. Humor is a means of opening the door and allowing others into your life. As a guy in a wheelchair, I’ve found that humor breaks down barriers and provides brief moments of connecting to others. It may even lead to a date. I know a girl likes me if she calls me. So, when I see someone I’m attracted to, I go up to her and bang my wheelchair into her shin and run over her feet. Athough I roll away quickly afterwards, on the back of my chair is a sign reading, “HOW AM I DRIVING? CALL (626) 446-77…” A sense of humor is important for everyone, but is certainly an asset for someone with a disability. Laughter puts people at ease. It’s a wonderful disarming mechanism when confronted with someone who is uncomfortable being around people with disabilities. (And we’ve all met those types of folks!) When you can make fun of yourself, others realize you are well-adjusted to your situation and they are more likely to loosen up. “I tell ya, I get no respect. I use a wheelchair, and everytime I go out with my friends they put my wheelchair in the front seat and me in the trunk.” I have been a professional “sit-down” comedian for over 20 years now, and part of my act deals with disability-related issues. “A lot of people ask me if sex is still the same as it was before my injury. I say, ‘Hell no, the prices have gone way up!’” When people come up to me after a show and want to tell me a joke rather than ask what happened to me, I know they’ve looked past my disability, because they were focused on my humor.

Humor helps me get through the day—and days are rarely easy for people with disabilities. Some unforeseen headache always arises, such as falling out of your wheelchair, getting a flat tire, a punctured seat cushion, a busted leg bag. Come on, a 30-year-old man pissing his pants? That’s funny! Believe me, I’ve seen it and it’s not pretty. But then again, neither is Tory Spelling and we’ve somehow dealt with her. Humor is equally important when in a relationship. It’s funny to look at the other person’s face when you’re making love (or in the mirror if you’re alone). Humor is the backbone of a relationship—and if you don’t have a backbone, then you’re going to have trouble standing up. If your wife gets mad at you, cut her hair while she’s sleeping. That stuff cracks me up, and it’s fun for the whole family. Laughter is the best medicine. I always laugh when my date wants me to pick up the dinner check. Sometimes I will write about topical humor. Recently, a person with quadriplegia was thrown out of his wheelchair by a Florida law enforcement officer. The story made all the news stations and papers. To vent my frustration, I blogged about it and used humor to make a point. What follows is my blog entry: I believe we we’re all given a sense of humor. Some of us use it more than others, some not at all. Don’t be afraid to use your funny bone—there is nothing more beautiful than a smile or the music of laughter. I know first-hand…and I’m not half the man my sister is.

BADGE OF HONOR I think it’s normal to feel a little self-conscious about your disability. Many people who don’t have a disability have something that causes them insecurity, whether it’s their looks, their intelligence or their singing voice. Let’s face it, none of us is perfect. We all have shortcomings. However, I fear that many of us look at our disabilities and feel as though we are not whole people—we’re unsure of how others may view us, often afraid it’s in a negative, helpless light. That’s why it’s important to keep our breath minty fresh. What many of us don’t realize is that a disability is a badge of honor. It shows the world that we have overcome adversity, that we don’t hide ourselves from the population, that we contribute to society. Every day we are out there fighting for a full and active life—a life that has not been easy on us—although most of us probably don’t even think about our disabilities daily. Our disabilities are what they are, and we’ve learned to deal with them, making the best of our situations. We go about our daily lives overcoming obstacles and, though we may rarely recognize it, we are respected and admired by many. We set an example that life is what you make it (or Break It, as Peri Gilpin’s show suggests). ABILITY 11

Do I like having a disability? No, but I am proud of the way I’ve handled the predicament. I am full of pride as I literally push through each day and, in many places throughout my journey in life, I have given hope and inspiration to others. So, if you have a disability, hold your head high.

HOW PEOPLE SEE ME I’ve often wondered how people see me. For the most part, I’ve been pretty lucky over the years with the whole dating thing—I can usually tell if someone is attracted to me or not. But there have been times when I think I’m connecting with a totally hot babe, only to find that she’s really not interested in me at all. Of course, I always wonder if it’s me she’s not attracted to or if it’s the disability that turned her off. It’s not like she’s going to tell me. “Of course it’s not your disability, honey, you’re just ugly.” Thank God for that—for a second there, I thought you were shallow. I’ve also been out with my buddies and been the one who gets the girl, only to hear my friends mutter, “Man, I gotta get me a wheelchair.” So, I hate to say it but, the disability has helped land me a chick or two (Not in the same night, but hey, I’m still young). Maybe women think a guy with a disability can be trusted. Fools, I say, but I’ll take it. Use whatever you got, baby. Damn right, I’ll take a sympathy date—as long as she’s buying. I’ve got to be honest with you: I’m not attracted to people with disabilities. I mean, come on, what if I dated another quad? Somebody’s got to do the heavy lifting in the relationship. (I mean, the moving and grooving in the sack-wink, wink.) It would just be too difficult to be with another quad. What would we do? Lie in bed smoking cigarettes, talking about how good it could’ve been? Bump and grind wheelchairs? Besides, by the time either of us got undressed it would be morning. I’m sorry, I think it’s best if I stay away from my own kind. So are people with disabilities attractive? Who knows? Who cares? My opinion is that a person with a disability brings a lot to the relationship table (besides, possibly, his own chair). There’s somebody for everybody out there. Yeah, you might not get that hot babe or that gorgeous guy, but who knows, you might get something better: someone who loves you for who you are.

ACT THE WAY YOU WANT TO FEEL Let’s face it, we’ve changed. We are not the same people we once were before we acquired a disability. Our circumstances have changed us, and many times, it’s for the better. We understand life more fully. We deal with the challenges. We learn to be more patient. We have most likely become attuned to life’s trials and tribulations. We might long for what could be, but we accept the here and now. We understand our limitations and do our best to move forward. We shall overcome.

Occasionally, however, people move in the opposite direction. They become bitter or depressed and turn on life, as if the disability has hardened their souls and sucked the life out of them. How can this be changed? Well, it’s difficult to change from the inside-out. I mean, you can’t just tell yourself you’re going to be happy. The best way to change your attitude is through your behavior (the “outside-in” approach). If you don’t feel happy, act happy. If you don’t feel loving, act loving. In short, act the way you want to feel, not the way you feel. And yes, I am saying put up a façade around others. You’d be surprised how behavior can affect your attitude. Eventually, you’ll find you’re not pretending anymore. Fight for your well-being. No, it’s not wrong to feel bad, unhappy, sad, disappointed, depressed or any other detrimental emotions. Those are all parts of life. But feeling these things all of the time is a problem. People don’t want to be around someone who’s a downer. Be upbeat! And when people around you are infused with your positive energy, they’ll be lifted up, and in return you’ll be elevated. Over time and through your actions, the unhealthy feelings you were feeling will be suppressed. When you get used to the “habit” of being happy and the notion that you are loving, that you are good, those feelings begin to come more naturally on their own. I know this may seem radical, but why not try it? You deserve the best. (Or, at least, I do.)

SO MANY TALENTS Whether black, white, Hindu, ugly, or with or without a disability, we all have specific talents. Some of us are good at writing. Some are technically minded. Some are artistic. Others are mechanical and can fix stuff (I can’t even change a lightbulb). No matter what type of disability we might have, we also have many gifts. Find your talents, then do your best to develop them. You always want to be prepared for when opportunity appears. I know people who want to be singers, and yet they don’t even have a demo CD to hand out. You never know who you might run into (or over!), so keep a portfolio of whatever you do. Then you can proudly say, “This is what I can do.” Things typically don’t come to you, you must go get them. Create those opportunities in your life. Get out in the world. Meet people. Be proactive. This is your life and you’re steering the ship. We’re not ordinary people, we’re extraordinary people. Each of us has something great and wonderful to share with the world. But if you need help, don’t forget I’m here—RENT-A-GIMP. “Ham on a Roll” jeffcharlebois.com

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by Jeff Charlebois

he Institute of Medicine estimates that nearly 100,000 patients in US hospitals die each year from medical errors that could have been avoided. Such mistakes not only cause unnecessary suffering for patients and their loved ones, they also create a huge financial burden on the health care system, a burden estimated to be in excess of $11 billion per year. In January 2010, Anthem Blue Cross, California’s three regional Hospital Associations, and the National Health Foundation launched Patient Safety First: A California Partnership for Health, an exciting collaboration through which the group proposes to improve the quality of medical care and reduce costs. The partnership, a three-year, six-million-dollar effort, will help keep patients safe via linkages through which hospitals will share their own safety initiative work and best practices. This article is the first in a two-part series about the effort.

Patient Safety First: A California Partnership for Health grew out of a challenge issued by Leslie Margolin, President and General Manager of Anthem Blue Cross, to its Hospital Relations Committee. As Margolin recalls, “I just put out the challenge of, ‘What is the area in which we could have the greatest positive impact on quality, safety, and cost, if we were to leverage our strengths and do this work together?’” In late 2008, leaders of the regional hospital associations in California—Art Sponseller, President and CEO of the Hospital Council of Northern and Central California; Jim Barber, President and CEO of the Hospital Association of Southern California; and Steve Escoboza, President and CEO of the Hospital Association of San Diego and Imperial Counties, along with Gene Grigsby, President of the National Health Foundation—responded to Margolin’s solicitation for ideas with a proposal for the safety initiative. When asked who deserves credit for the collaboration, Margolin graciously said that “they get the credit for the patient safety component of it, and I think we all get the credit for wanting to work together across organizational, geographic and entity boundaries.” While individual hospitals and health systems have engaged in their own patient safety efforts, Patient Safety First was particularly motivated to create links after learning from Bruce Spurlock, MD—who has consulted on similar, though smaller, collaborations—that the average amount of time for new evidence of best practices to reach broad acceptance as a standard of care is 17 years. Margolin hopes that, with Spurlock’s help, this initiative will result in best practices being shared almost immediately, saving lives and cutting costs. “I think the opportunity is profound,” Margolin said, “and I’m very excited about leading this work and leading it in partnership.”

Though they considered taking on as many as seven areas of focus, the partnership ultimately settled on three: 1. PERINATAL CARE: Reduction of elective deliveries prior to 39 weeks. 2. SEPSIS: Reduction of incidence and morbidity. 3. HOSPITAL-ACQUIRED INFECTIONS IN ICU SETTING: Reduction of incidence of ventilator-associated pneumonia (VAP), central line bloodstream infections (CLBSI), and catheter-associated urinary tract infections (CAUTI). Certain that the initial efforts will succeed, Margolin is already planning the partnership’s expansion to other areas, including medical errors, wrong-site surgeries, and items left in surgical sites during operations. “The other key partner that we’ve brought into this on the aspect of the safety effort that relates to encouraging mothers to carry their babies to full term is the March of Dimes,” Margolin said. “This way, we can capitalize on all the research that they’ve done and have their support for our efforts while we support theirs to get education and communication and materials out into the community, into physician offices, into hospitals, and into the hands of mothers and families who are trying to make important decisions about delivering babies.” Each partner has a specific role in carrying out the initiative’s objectives. Namely, Anthem Blue Cross will inform and reward members for practices that improve safety. In addition, Anthem will reach out to physicians outside of hospital settings to provide information and reward them for safe practices. The hospital associations, which represent 95% of hospitals in the state, have already engaged 129 hospitals in the Patient Safety Initiative, and the National Health Foundation will serve as a clearinghouse for all data collected from participating hospitals, which it will use to establish benchmarks for monitoring outcomes, to establish the success of the program. “We want to be sure that everybody in the system of care is treated fairly,” Margolin said, when asked how Anthem will share its savings. “Our members, their patients, our customers, hospitals and physicians all share in the benefits of this program along with us. The idea is to improve safety and quality, reduce costs, and save lives.” Though Margolin’s job is particularly challenging at present, given the plan’s controversial decision to implement significant premium increases for individual policy-holders, she remains committed to the patient safety partnership. In spite of everything, Margolin says, “this really is the most exciting work I’ve had in the course of my career.” by Lauren Becker nfhca.org ABILITY 13

head. We should probably check you out.” So he led me over to the ambulance, and soon after that I was put in a neckbrace and onto a little stretcher thing and I realized they were taking me off to the hospital. One of my friends had tried to get into the ambulance with me, I think, and was not allowed.

ometimes the stories we cover at ABILITY Magazine hit a little too close to home. In this interview with ABILITY editor David Radcliff, neurosurgeon Thomas Chappell gets to the heart of an unfortunate accident that nearly cost Radcliff his life. Thomas Chappell: Tell me about this head injury you recently sustained. How did it happen? David Radcliff: Pretty quickly, actually. It was a Friday night and I was walking to a house where a bunch of my friends live together. I crossed a street I had crossed countless times before—and then, all of a sudden, I wasn’t walking anymore. I was on my back. I had been hit by a car. Chappell: Do you remember being hit? Radcliff: Not really. I must’ve gone unconscious immediately, because the next thing I remember, after I’d regained consciousness, is that I was lying in the street and there was a total stranger kneeling over me. I assume he was the driver of the car, though we still haven’t spoken because I was carted away and all of this paperwork stuff takes forever. Anyway, I woke up and realized I wasn’t in any pain, which I found really surprising. It felt a little like being in one of those war movies in which a bomb goes off and you can’t really hear or make sense of what’s going on around you. There’s just a lot of stimuli, and you’re dazed. I was kind of disoriented. Chappell: You had good reason. Radcliff: I have cerebral palsy and use crutches to walk and, after the accident, I was surprised to find that my crutches were fine and were still near me. I got up on my feet again and, although everything felt kind of vague, I wasn’t hurting. I remember telling the ambulance medic, sort of stupidly, I guess, “I think I’m fine.” The medic said, “You’re bleeding from the side of your

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As I was being driven to the hospital, the medics started asking me questions about, I don’t know, “What day of the week is it? What is your name?” And I could come up with some answers but not most of them. I had forgotten a lot of basic information, which was pretty spooky to me. Would I get it back? My dad had died of brain cancer, which I remember telling them. It’ll be four years ago this week, actually, and so I’m very hyper-aware of brain injury stuff. Obviously I was concerned. I was bleeding from my left temple, and I knew that was a pretty bad place to bleed. I remember telling the medic that I have cerebral palsy, and I remember asking where my crutches were. For some reason I’d thought maybe they’d get left behind. I also asked the medic, “Is this like what happened to Liam Neeson’s wife?” Because for some reason, one of the things I did remember was that Natasha Richardson hit her head while skiing, felt fine, and then died the next day. And when I asked the medic about that situation, I could kind of see him give me a funny look. I don’t even remember what his response was. I do remember I asked him if I was going to be okay, and he sort of gave me a generic, noncommittal response, just in case I wasn’t. (laughs) Chappell: That’s a fairly typical story. I imagine he just looked at you quizzically because he wasn’t aware of the story of Natasha Richardson. What happened in her case is actually a well-understood medical phenomenon. In that scenario, there was a substantial blow to the head, sufficient to fracture a thin bone on the side of the skull. This bone, found just in front of the ear, is called the temporal bone, and beneath it lies the temporal lobe of the brain. A major artery, called the meningeal artery, runs just under the surface of the temporal bone and can be torn when the bone is fractured. Often in situations such as these (as occurred with Ms. Richardson), the victim is initially knocked unconscious for a brief period but awakens looking just fine, or may even laugh and joke with the

ambulance driver. Unfortunately, during this “lucid interval”, the torn middle meningeal artery is bleeding inside the victim’s head and is pushing the temporal lobe against the vital structures of the brainstem. If the blood clot is not immediately removed, the pressure it causes can rapidly lead to coma and death. In numerous cases, however, rapid ambulance transport to a facility where a quick diagnosis by CT scan can be done, an emergency surgery often results in the patient’s life being saved. Radcliff: I realize it was kind of obscure that I pulled out that information about Natasha Richardson. I mean, I couldn’t remember how old I was—I think I told the medic I was 24 and I’m actually 27—but somehow I could remember Liam Neeson’s family history. Anyway, I remember telling the medics that I felt nauseous on the drive—I think that was the last thing I’d said, actually—and I passed out. I don’t have much memory of anything for the next day and a half or two days. When my friends showed up at the hospital that first night, apparently I was really out of it. One my friends kind of jostled my leg to see if I was responsive, and I mumbled something to him, but neither one of us knew what I had said. I have no memory of these moments, but I’ve been told about them after the fact. Apparently, I also had to be restrained to the bed with straps because I was struggling with the hospital staff. I’m pretty physically strong, I guess, and I broke the restraints, so they had to get different ones and try again. I really don’t like being in hospitals, and obviously was anxious to get out of there. But I don’t remember much until at least a day, maybe two days later, when my mom and my grandpa and my sister all came in. Initially, when doctors in the emergency room called Nebraska and got my mom on the phone the night of the accident, they held the phone up to my head, apparently to see if her voice would trigger some kind of response. I couldn’t respond in anything but a moan. I don’t know if that was from sedation or what, because my memory of those initial days still hasn’t returned. Chappell: That’s a fairly typical story as well. The reason you were straining against the restraints is also fairly common. People in your situation are often what we call “agitated,” and you had probably been sedated by the doctors and nurses when you spoke to your mother because you were agitated. But that’s a fairly typical story. How long do you think you might have been knocked out, initially? Radcliff: When I got hit by the car? That’s still hard to say. At the time I came to, the ambulance had gotten there, so I was out for at least as long as it had taken for it to arrive. My friends actually didn’t know I was outside their house until ambulance lights had filled their living room and they thought something must’ve

happened outside. It was a very odd experience for me, though, because there was no intervening time for me at all between my injury and the arrival of the ambulance. I remember I was walking across the street and then— boom—the ambulance was there. It was very immediate for me. Chappell: You mentioned you remember the driver standing over you. That probably would have been after a few seconds. He would have gotten out of his car and probably would have run over to you within a few seconds. Radcliff: I’d hope so. I don’t know how long he was over me waiting to see if I’d come to. I’m glad that he waited with me, though. Chappell: He had probably used his cell phone to call the ambulance, I would presume. I’m guessing on all of this, of course. Radcliff: Yeah, I’m just glad it wasn’t a hit-and-run, because then I’d have really been screwed. But he, aside from hitting me, apparently did everything he was supposed to do. (laughs) Chappell: Were you on a sidewalk? Did he manage to hit you on a sidewalk? Radcliff: No, I was crossing the street. I guess I just happened to have been there at the wrong time. (laughs) It was just a fluke thing. Really bad luck. Or, considering how quickly I recovered, good luck. I turned around a lot faster than the doctors had anticipated. Chappell: Timelines are very interesting when it comes to memory after an injury. Which Friday night was this? Radcliff: It was two Fridays ago. Chappell: And when do you think after that you began to remember a lot of what you’ve just told me? Because you’ve just actually recounted a lot of details that I’m guessing you didn’t remember, certainly within those first couple of days. When do you think you started to recall some of that stuff? Radcliff: Monday is probably when I first started to— it’s hard to say, actually, because some of the stuff I’ve recounted was told to me by friends, or was told to friends by people at the scene, so then it kind of feels like— Chappell: —you remember it, but really you were told. Radcliff: Yeah, in some cases. And some of the images are so vivid that it’s kind of hard to shake them, anyway. For example, all of the stuff about me having been strapped to the bed is stuff I don’t remember at all, but it’s striking. I don’t remember it, but that’s what I was told by the doctors. ABILITY 15

Chappell: So that would have been within the first day or two. When did you go home from the hospital?

the bleeding. I never actually saw the CT scan, which I thought was unusual. I figured they would have shown me that.

Radcliff: I was let go on Monday, I think. Chappell: It’s a little unusual, in your case, that you actually remember a lot of the things immediately after the event. Those are usually the last things to return. And then you seem to have a little bit of gap between when you passed out again in the ambulance and when the weekend was over. How long did you say you were in the hospital? Radcliff: I’m not absolutely sure, but I think I was let out on Monday. Chappell: So you were there a few days. It’s a little scary in the sense that much of this is exactly what happened to Natasha Richardson. What you experienced is called a “lucid interval,” in which you’re initially knocked out, you wake up for a little while, and then, within the next hour, you lapse into a coma. Radcliff: I dodged a bullet. Chappell: What did the doctors tell you about your CT scan? Radcliff: I don’t remember actually going through the scans, except for the one I did shortly before dismissal from the hospital. I think I did four or five CT scans during my stay, and my friends remember seeing me being wheeled off to do one. I had subdural and subarachnoid bleeding and, according to the doctors, there was a lot of progress in my brain’s ability to reabsorb

Chappell: I always show the scans to the patients and the families, but not all doctors do. It’s a little easier to do now because we can bring computers into the room, so sometimes I bring my laptop in and show patients their scans. You can actually get a copy of your scan on a CD-ROM. All you have to do is call the radiology department at the hospital and tell someone there that you’d like to come pick up a copy of your CT scan on CD. They’ll prepare it for you. Radcliff: I’m going back into the hospital in a few days for a check-up. I don’t know if they’re planning to do another CT scan then. Chappell: They probably won’t. Radcliff: I was treated at the LA County hospital at USC. That just happened to be the one I was closest to when I had the accident. They were really good. I was actually wearing my USC sweatshirt the night of the accident, which is kind of funny. Maybe that’s why they treated me so well. Chappell: It would have been funny as long as the ambulance hadn’t taken you to UCLA! Radcliff: Yeah! (laughs) Chappell: So it’s been a little over a month now, not quite a month, since the accident. What’s gone on since you left the hospital?

Memory after a head injury has a typical pattern. Most people never recall the details of the event and what happened immediately afterward. Also, the amount of memory loss is roughly proportional to the amount of time one spends unconscious. Typically, memory of events after the injury will come back gradually and incompletely, beginning with more recent events and moving to events which were closer to the time of the injury. Few people ever recall the actual events around the time of the injury. In many cases, memory is not the only brain function affected by the injury. Depending upon the severity of the injury, patients may experience cognitive, sensory, or motor problems. Cognitive issues may include difficulty concentrating or accomplishing tasks that require complex thought (such as calculations). Sensory deficits may encompass problems with vision, hearing, taste, or even balance, as balance depends on sensation from the feet and inner ear. Motor dysfunctions may involve speech problems, or difficulty with various tasks that require the use of the arms or legs. Other symptoms that frequently manifest after a concussion include dizziness, ringing in the ears (tinnitus), nausea, poor appetite, fatigue, and headaches. Most of these symptoms eventually resolve themselves, and there is no specific treatment for them other than to rest, drink plenty of fluids and take headache medication. These symptoms are not indicators that something dangerous is going on inside the head. 16

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Radcliff: When I left the hospital, the doctors had me on Keppra, which my dad was also on when he had brain cancer, to prevent seizures. I never had a seizure, but I was on Keppra for, I think, four days, and I was getting headaches pretty frequently—every morning for maybe a week. The headaches were rough. I don’t get migraines, but these were about as close as I’d like to get to one. The Keppra also affected my appetite, so I wasn’t eating much. Chappell: Actually, the head injury was probably what was affecting your appetite. Radcliff: Oh, really? I was just blaming the medicine. Anyway, I’m not getting headaches anymore, I’m not on the Keppra anymore, I’m eating fine. I was a little concerned that

driving might make me dizzy. It didn’t. Chappell: What about work? Are you able to do that? Radcliff: Well, as you know, I write stories for the magazine, do interviews and edits, and I’m back to that now. Usually what I also do is come down to the office in Costa Mesa every two months, just before we put an issue out, so I can do page edits there. This time around, though, I’ve been talking with the publisher about whether or not I’d be able to drive down after my accident. Costa Mesa is about an hour’s drive from where I live. But I think I can manage it, and the doctors are fine with it. I do a lot of writing and editing work, mostly freelance, and after my injury I was very concerned about whether I’d be able to continue to write at all. In the few weeks following my accident, I wanted to let all of my loved ones and friends know I was okay, and I was getting so many heartfelt messages and phone calls and e-mails, but I just didn’t have the energy to write everybody back. So I figured the best way to let people know my status was to put it up on my Facebook, and in that way reach hundreds at once. In a Facebook status line, you just get, what, maybe 100 characters? So that’s how I was keeping people informed. It was manageable. And now, thankfully, I’m back to a place where I’m writing just like I ever did, and I’m able to edit and go out and be productive. Chappell: That’s where my questioning was going. I was trying to see if you feel this event has impacted your cognitive abilities at all. But you’re back to writing with your same level of creativity and sharpness? Radcliff: That’s assuming it was creative to begin with (laughs). Actually, regaining my ability to write fluidly was one of the best developments in my recovery. I think in part because of my physical disability, which I’ve had all my life, my ability to write and express myself is extremely important to me. I’ve written, and have been encouraged to write, ever since I was young. If suddenly I no longer have that ability, that’s a big strike against me. If you can’t walk and you can’t write and you can’t form cogent thoughts—well, I’d rather not think about it. Chappell: Given the extent of your injuries, you’ve actually made a fairly rapid recovery. I’d say it’s a very rapid recovery, overall. You said you’re 27, so your youth is in your favor. Do you feel that there’s anything about you that is still affected by this accident? Are you having any type of symptoms at all? Radcliff: No, not anymore, although getting back to feeling truly like myself was gradual, even psychologically. It’s bizarre to think about how close I came to something really horrible.

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if that artery is torn, as it was in Natasha Richardon’s case, you can develop a blood clot that can be fatal. Fortunately, it didn’t happen that way in your case. You’ve made a pretty amazing recovery. Typically, somebody with subarachnoid hemorrhaging and subdural hemorrhaging on their CT scans has symptoms for as long as a year, sometimes longer. So the fact that you’re virtually perfect again is very good news. Radcliff: I know. I’m kind of amazed, and I’m very grateful. So many people at the hospital were saying things like, “You don’t know how unusual this is, to see you come around so fast from circumstances like these.”

After the accident, I was having muscle aches, and I had a lot of bruising on my elbows and shoulders and tailbone. No broken bones, though, amazingly. For about a week after coming home, I was walking at about half the speed as I usually do—which, granted, is rarely an impressive speed to begin with. So it took a while for everything to kind of ease back to normalcy. But yes, everything works now. I had been taking it really easy for a while and was consciously trying not to push myself too hard. I’m not the kind of person to just lie around, and I get bored very easily, so it was difficult for me to adjust to just letting my body heal itself. I was feeling a little homebound and stir-crazy. According to the doctors, my non-displaced temporal lobe skull fracture is apparently stitching itself back together, in a sense. That’s what I’ve been told. Chappell: It’ll heal on its own, yes. It’s like any broken bone. If you break a long bone—like one in your arm— you have to splint that because it won’t stay still very well, but when you fracture your skull and it’s not badly displaced, typically nothing needs to be done about it. It’ll heal up on its own. It’ll always be noticeable, though, in the sense that if you ever got a CT scan for any other reason, doctors would be able to see that a fracture was there and that it has healed. But it’ll just heal in place, so to speak. The interesting thing about all this is, again, is that this is exactly what happened to Liam Neeson’s wife. She had a fracture of the temporal bone, and you alluded to knowing that the temporal area is an area in which you don’t want to be badly injured. You were exactly right. When you fracture the temporal bone, it can actually tear an artery there. So you’ve been very lucky, because 18

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Around the same time that I had my accident—you’re probably aware of this—Bret Michaels, the lead singer of Poison, had a brain hemorrhage. I saw him talk to Oprah about it, talking about how he felt this little explosion inside his head. When he went to the hospital, the doctors said he had something like a twenty-percent chance of living. He’s apparently fine now. Chappell: If I’m not mistaken, Bret Michaels ruptured an aneurism, which is a different situation from yours, but can be fatal as well. But I’m very glad to hear you’re doing so well. Radcliff: I spoke to the neurosurgeon who had operated on my dad during his cancer treatment—this is a doctor back in Omaha, where I’m from—and he was able to answer some of my questions. He essentially said that the fact that I was able to have the conversation that he and I were having on the phone indicated to him that if anything were going to happen to me, it would have happened already. So I guess I’m kind of in the clear. Chappell: Yeah, the big problems are typically right after the injury. From there, it becomes a question of how well someone can recover, and of course you’ve made a rapid and full recovery. Just so you know, these injuries are variable, and CT scans don’t necessarily predict much, in and of themselves. Often the biggest ct is how you do initially. In other words, it’s a question of whether you come into the hospital in a coma versus coming in mostly awake and agitated. Radcliff: Thanks a lot for talking about this with me. It’s kind of interesting to hear about what’s happening to my brain from the outside, from someone who knows how it all works. Chappell: No problem. Be careful out there. thomaschappellmd.com

ach year, The HSC Foundation (HSCF) honors a young person by way of its Advocates in Disability Award, also known as its ADA. An organization committed to ensuring access to services for people with disabilities, HSCF created its award to honor and encourage a person with a disability, between ages 14 and 26, who has demonstrated a commitment to working toward positive change in disability rights. The award comes with a $10,000 prize. This year HSCF presented its award to Lacy Pittman, a young disability advocate who will use the award money to create a contest called “My Generation: Youth, the ADA and Art.” The contest encourages youth with disabilities to interpret the importance of the ADA through various art forms—including painting, video, writing, drawing and other creative outlets—steming from her life-long interest in artistic expression. Pittman said she hopes the contest will compel other young people with disabilities to “think about the opportunities that the ADA has allowed them, and how it has helped to revolutionize our society.” As a child, Pittman struggled with school and had difficulty with reading comprehension. Her learning challenges were initially thought to be related to an inability to focus her eyes, and although intensive eye treatment

ultimately helped her overcome her reading difficulties, she nearly failed seventh grade as she continued to struggle maintaining attention in school. Finally, she was diagnosed with Attention Deficit Hyperactivity Disorder and placed in a program at school that helped her with her difficulties. “Although these classes made me feel like a ‘special kid’ and embarrassed me,” Pittman recalled, “I was in a smaller classroom setting, learning at a slower pace, and receiving consistent positive feedback.” This new learning environment helped Pittman assimilate into standard curriculum, where she excelled. She went on to study Marketing and International Business at the University of Tennessee, distinguishing herself as a student, and as a leader in disability rights advocacy. Today Pittman works as a policy analyst for the National Council on Independent Living. “Lacy’s past advocacy work speaks for itself,” said foundation vice president Jessie MacKinnon. “She has experienced challenges and obstacles due to her disability, and yet, they have only reinforced her commitment to ensure that others with disabilities will be empowered. Her project is completely in line with the Foundation’s mission. It encourages young people with disabilities to get involved and get engaged with the disability movement.” by Lauren Becker hscfoundation.org Lacy Pittman ABILITY 19

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Photos by David P. Anderson

PUPPET PULLS STUDENTS TO THE ADA

“W

hen a good dream comes true you want to shout it out to the world,” said Matrix Theatre Company partner and volunteer Janice Fialka. After two years of planning, the Matrix Theatre Company and volunteers in its surrounding community of Southwest Detroit began construction of a giant puppet of Justin Dart, a man often called the “father” of the Americans with Disabilities Act (ADA). Although the ADA was signed into law 20 years ago on July 26, few people know of Dart or of his role in its success. By spearheading a creative project to memorialize Dart and engage a community, the Matrix Theatre Company hopes to change that fact. In early March, Matrix Theatre members and volunteers carried art supplies and molds of the Justin Dart puppet head and hands to the Roberto Clemente Recreation Center. Once there, volunteers placed photos of Dart and his beloved widow, Yoshiko, on a sign-in table to encourage staff, families and youth to get involved in the project. Of specific interest was the possibility of engaging local youth, with and without disabilities, to join in the “Matrix way” of creative collaboration. It worked. When Amanda Stahl, a Detroit disability activist, rolled into the art room, she immediately noticed that her wheelchair fit perfectly under the table which held the giant puppet head of Justin Dart. Stahl was able to dig her hands right into the clay, keenly aware that the organizers had thought of this adaptation when planning the project. Stahl admitted she is especially excited because the puppet is designed to be controlled by people who use wheelchairs.

Sculptor Carl Goines and puppetmaker Meghan Harris were joined by local youth, community residents and volunteers who spent many hours learning about Dart as they sculpted his hat and created buttons for his jacket. Goines carefully instructed young volunteers to keep the tape tight as they wrapped it around the hands and head of the puppet.” Ana, a six-year-old volunteer, balanced the large puppet’s hand in her own tiny hand and looked up at Goines for reassurance: “Like this? Am I doing it right?” “Perfect,” Goines said as he handed scissors to Tyrone, a young volunteer who was eager to help shape the face of the puppet. At another table, Michael, a young volunteer covered in a paint-splotched apron, massaged pieces of hard clay with water to soften it for use on the puppet’s ear. Once the clay was ready, the kids cheered and leaped over each other to be the first ones to slap it onto the head of the puppet. As they continued working, several of the children clamored to have their photos taken with the puppet’s head and hands, eager to show their families their fine work as artists. As Fialko educated the students about Dart and the Americans with Disabilities Act, she struggled to explain things in a way that would best grab the attention of young minds. Suddenly, she thought of curb cuts. “Pretty soon, you’ll be riding your bikes, right? You know when you come to the end of a sidewalk and there is no curb?” The kids were listening. “The curb needs to be cut in a certain way so that people who use wheelchairs can roll easily onto the street and not get stuck,” Fialko continued, “or so they don’t have to bump themselves down the curb.” ABILITY 21

Sculptor Carl Goines shows volunteer Amanda Stahl how to create the details that bring the sculpture to life.

“My Uncle Sam is in a wheelchair,” shouted Kyle, a young volunteer who was suddenly engaged in the conversation, “and he sometimes gets real mad because he can’t get through a door.” From there, conversation took off, the children all talking about how people feel when they aren’t treated fairly. As if remembering her school lesson, Ana chimed in with, “Martin Luther King had to fight to get civil rights for African Americans.” “Yes, that’s what Justin Dart and many other people had to do,” Fialko said. “They worked hard, traveled around the country and talked to a lot of people in every state. They had marches and protests, and eventually got the ADA passed. That was the civil rights law for people with disabilities.” Until that afternoon, Justin Dart was not someone any of these youth knew about. Now, he was literally a familiar face. While the children had fun with the clay, they also talked openly about what it takes to create a world in which all people belong, in which buildings and buses are accessible, and in which everyone realizes that fairness for all is possible. “It’s been inspiring to watch as this diverse group of people works together to bring the puppet to life,” said Matrix Founder and Executive Director Shaun Nethercott. “One of Justin’s wishes was to be known as a unifier, and that is exactly what is happening with the building of this project. People are sharing stories, having fun, being creative, and reminding each other that it is up to all of us to build a world where we all belong.” 22

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“Interest in the Justin Dart puppet is nationwide,” said Volunteer Coordinator Ken Srdjak. “Donations have come in from all over the country. We have even received money from Justin’s wife, family, friends and disability activists. If this continues, I am confident we can reach our fundraising goal which will allow us to tour the puppet throughout the country this summer.” “It’s time that Justin Dart and his ideas become visible to all,” said Rich Feldman, Matrix partner and volunteer. “It’s time that disability is recognized as a natural and beautiful part of human diversity.” Tom Olin, a photojournalist for the disability movement since 1983, was excited about the creative way in which Justin’s vision and spirit are being communicated through the building of the puppet. “Sometimes it happens that an image or a piece of art can reconnect a community with a fallen soldier’s classic one-liners that ‘lead us on’ to commit ourselves to ‘the revolution of empowerment.’ The Justin puppet will be looming in the streets, shouting out the words, ‘I am with you, I love you, lead on,’ for the solidarity among all who love justice.” Though often called the Martin Luther King, Jr. of the disability civil rights movement, Justin Dart thought of himself in much more humble terms. Born August 29, 1930 into a wealthy and prominent family, he was a self-described “super loser.” Spoiled and difficult, Dart attended seven high schools without graduating from any of them. After contracting polio in 1948, he went on

to earn bachelor and master’s degrees in political science and history, and used a wheelchair until his death in 2002. . After being denied a teaching certificate because he used a wheelchair, Dart went into business in 1956 and in later years hired people with disabilities, giving them a living wage within his companies. Working with President Ronald Reagan, Dart helped to draft a national policy which called for a national civil rights legislation to end the centuries-old discrimination of people with disabilities. This legislation eventually became the Americans with Disabilities Act of 1990. Although he received many awards—including the Presidential Medal of Freedom from President Bill Clinton—Dart never wavered in his commitment to disability solidarity and insisted that all people with disabilities be protected by the law, including those with mental illness and people with HIV/AIDS. “I am a symbolic representative of thousands of ADA mothers and fathers,” Dart was often known to say. Dart never hesitated to emphasize the community of support that made his work possible. His work was never about him but instead about the community working together to advance human dignity for all. Dart’s wife of 33 years has enthusiastically given full support to using the puppet as a creative way to educate, inspire, and empower others. According to Nethercott, the Matrix Theatre Company is one of only a handful of theatre arts organizations in the country to create giant puppets. The Justin Dart construction will take its place among the impressive collection of historically significant “hero” puppets, which includes such figures as Martin Luther King, Jr., Cesar Chavez, Mother Jones and Ella Baker. “I think Justin Dart would be proud of this effort,” Nethercott said. Now in the final stages of creation, the Justin Dart puppet will be completed in time to take its place at the US Social Forum, at which more than 20,000 people will come together in Detroit. The puppet will be used in ADA rallies and celebrations in Washington, DC, as well as in many state-sponsored events. Matrix has submitted a grant application to fund a small theatre troupe which will accompany the puppet on its journey to raise awareness of disability issues throughout the country. The Justin Dart puppet is funded, in part, by Local Initiatives Support Corporation, Michigan Disabilities Rights Coalition, the United Auto Workers, as many individual donors from across the country. Matrix Theatre Company is a non-profit community-based theatre located in Southwest Detroit. Established in 1991, it creates all of its projects from scratch—including puppets of all sizes and over 95 original plays. Matrix Theatre Company uses the transformative power of theatre to change lives, build community and foster social justice. It creates opportunities for children and adults, especially those in isolated or challenged communities, to become creators, producers and audiences of original theatre. For the past three years, Matrix Theatre Company has committed to creating an inclusive theatre experience for people with and without disabilities. All activities at the theater are orchestrated to best ensure accessibility. “The Justin Dart giant puppet is Detroit’s contribution to creating a truly inclusive social movement,” Nethercott said, “that empowers each of us to change ourselves and our world. by Kathryn Brennan matrixtheatre.org

s we all know, this year marks the 20th anniversary of the Americans with Disabilities Act (ADA). As chief sponsor of the ADA in the Senate, I will always remember the day it was signed into law—July 26, 1990—as one of the proudest in my legislative career. We have come a long way in the last 20 years. Before the ADA, life was very different for people with disabilities, and discrimination was both commonplace and accepted. I still recall the hearings we conducted in both the Senate and the House, and the testimony of so many individuals with disabilities from all across America about the discrimination that they faced on a daily basis. We heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs or to gain access to their local swimming pools. Stories of individuals who couldn’t ride on a bus because there wasn’t a lift. Stories of individuals who couldn’t go to concerts or ballgames because there was no accessible seating. Stories of individuals who could not even cross the street in their wheelchairs because there were no curb cuts. Stories of individuals who could not buy a pair of shoes or go to the movies. In short, stories of millions of Americans who were denied access to their own communities—and to the American dream. Passage of the ADA was a bipartisan effort. As chief sponsor in the Senate, I worked very closely with people on both sides of the aisle, both in Congress and in the Administration. Senators Ted Kennedy and Bob Dole were indispensible allies. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney

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General Dick Thornburgh. And there were so many others—Justin Dart, advocates, other members of Congress and the Administration—whose commitment and support were instrumental in helping pass the ADA. The final vote on the ADA (91 to 6 in the Senate) sent a resounding message that this nation would no longer tolerate isolation, segregation and second-class citizenship for people with disabilities. Over the last two decades, we have made truly amazing progress. Streets, buildings, sports arenas and transportation systems are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is usable by individuals with visual or hearing difficulties. New communications and information technologies that are accessible to people with disabilities continue to be developed. Because of the employment provisions in the ADA, many individuals with disabilities are now able to get reasonable accommodations on the job, such as assistive technology, or accessible work environments, or more flexible schedules. These reasonable accommodations are important tools in ensuring that people with disabilities have an equal opportunity in the workplace. These changes are all around us. In fact, today they are so integrated into our daily lives that it is sometimes hard to remember how the world used to be. Just as important, we have seen an enormous change in attitudes toward people with disabilities. Our expectation is that we will do what it takes to give individuals with disabilities not just physical access, but equal opportunity in our schools, in our workplaces, and in all areas of our economy and society. Today we recognize that, like all people, people with disabilities have unique abilities, talents and aptitudes.

And America is better, fairer and richer when we make full use of those gifts. Every individual with a disability deserves a chance to realize the four great goals of the ADA: equal opportunity, full participation, independent living and economic self-sufficiency. However, progress under the ADA only happens when people—people like you—understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life. It’s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights. To those of you who are on the front lines in this struggle: I thank you for the work you do every day to ensure that ADA is alive and vibrant in your communities, opening doors of opportunity and breaking down barriers of discrimination. We have continued to advance the rights of individuals with disabilities and the four goals of the ADA with the recent passage of the ADA Amendments Act, which restored our original Congressional intent, in respect to who is covered by the ADA. We also passed the Community First Choice Option, which will increase the availability of home and community-based services for people with disabilities. And yet, our work is not yet done. An ongoing challenge is to increase employment opportunities for individuals with disabilities. Recent surveys show that only 37 percent of individuals with disabilities are employed. These are individuals who want to work, but who are unemployed due to a variety of factors. Many individuals lack adequate support services, some employers are not providing reasonable accommodations, and others are still reluctant to hire people with disabilities. As a consequence, an estimated 21 million people with disabilities are not employed. We must break down the barriers that prevent or discourage individuals with disabilities from working and having the opportunity for economic self-sufficiency, as we promised in the ADA. That is why I will be hosting a two-day Congressional summit in the fall that will focus on the employment of individuals with disabilities in America. On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. I will never forget his final words before taking up his pen. He said, “Let the shameful wall of exclusion finally come tumbling down.” Today, that wall is indeed falling. The ADA has opened doors, created opportunities and transformed lives. Together, we can help ensure a future of even greater inclusion, equality and opportunity for all Americans. by Senator Tom Harkin Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee ABILITY 25

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1. Department of Transportation which recently settled a lawsuit over access to sidewalks by people with disabilities 5. I Know a Woman Like That author (mother and daughter) last name 10. A Country Called Amreeka, author. ____ Malek 12. Lifted weights (2 words) 14. Was first in a race 15. Vie for office 16. Memo start 17. Oscar-winning actress who has supported Breast Cancer Care. Nicole ____ 18. Frontman of rock band Big Toe. Mark ___ 21. Riches 22. Symbol whose value is very overrated 23. Persona ___ grata 26. One of the top female wheelchair racers in the world (2 words) 29. What? 31. ___athlon 32. TV show in which RJ Mitte plays a boy with cerebral palsy (2 words) 37. "What's up, __" 38. ___ Leppard (band) 40. Concord locale 41. First Public Safety Communications Center in the nation to successfully receive text messages sent directly to 9-1-1 46. Media format replaced by the DVD 48. Gambling mecca, for short 49. Bachelor's last words! 50. Spider-Man creator. Stan ___ 51. Sport in which Scott McNeice and David Bailey were top performers with disabilities

1. Special Raporteur on Disability of the Commission for Social Development. Shuaib ____ 2. Rested (2 words) 3. Tourer 4. Person, place or thing 6. Assistance 7. Powerful characteristics 8. 1980s White House name 9. Super Mario Bros. enemy 11. Fantasy Island prop 12. Bad joke 13. Huffiness 15. Took a chance (3 words) 19. Belong (2 words) 20. Reach a goal, for example 24. ___ the rainbow 25. Take hold of 27. Ali blow, for short 28. First female US Paralympian to claim gold in the summer and winter Games. Alana ____ 30. Comic character: __ man 31. Matter of contention 32. Global thriller starring Brad Pitt 33. Network 34. Sort of:, suffix 35. Business promotion 36. The ____'s in the details 39. Well-known dog 42. Does it make you more and more invisible? 43. Frontiersman Carson 44. Ryan's Love Story co-star 45. Charleston state 47. Syndicate head

answers on page 58

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Batu, Biker’s Coffee, Black Beauties, Blade, Chalk, Chiken Feed , Crank, Christy, Crystal, Crystal Glass, Glass, Go-Fast, Hanyak, Hiropon, Hot Ice, Ice , Kaksonjae, LA Glass, LA Ice, Methlies Quick, Poor Man’s Cocaine, Quartz, Shabu, Shard’s Speed, Stove Top, Super Ice, Tina, Trash, Tweak, Uppers, Ventana, Vedria, Yaba, Yellow Bam...

id you know the expressions above? All of these terms are synonymous with Crystal Meth. Each phrase may look and sound unique, yet they all embody one of today’s greatest killers. The above terms are just some of the ‘street’ names that have been assigned to this heinous drug that has damaged so many lives, and which continues to terrorize a sizeable segment of the population.

SOME BACKGROUND ON CRYSTAL METH: The National Institute on Drug Abuse (NIDA) defines methamphetamine as the following: Methamphetamine is a central nervous system stimulant drug that is similar in structure to amphetamine. Due to its high potential for abuse, methamphetamine is classified as a Schedule II (high abuse risk) drug and is available only through a prescription that cannot be refilled. Although methamphetamine can be prescribed by a doctor, its medical uses are limited, and the doses that are prescribed are much lower than those typically abused. Most of the methamphetamine abused in this country comes from foreign or domestic superlabs, although it 28

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can also be made in small, illegal laboratories, where its production endangers the people in the labs, neighbors, and the environment. The use of methamphetamines in the United States has been lawfully accepted as a mode of treatment for narcolepsy (a sleeping disorder), types of Parkinson’s disease, alcoholism, obesity, and Attention Deficit Hyperactivity Disorder (ADHD). The drug was initially manufactured in Japan, and was commonly used by Adolf Hitler and German pilots and soldiers in World War II. The United States saw a significant boost in the use of meth in the 1950s, and its use for recreational purposes began cresting in the late 1980s. It has often been called a “party drug” because of its ability to enhance the senses and to cause a euphoric high. It is said that after using meth, people often go days without sleep and engage in high-risk sexual activity. The authorized form of methamphetamine is odorless, though other forms of the drug often smell of ammonia, as a result of chemicals used during the production process. In 1983, the United States passed laws banning ownership of any type of contraband or instruments that would be used for methamphetamine production. Laws passed by federal and state governments limited the manufacture of crystal meth. The Combat Methamphetamine Epidemic Act of 2005 was one such law. The problem of rampant meth production was acknowledged by the U.S. Department of Justice through the declaration of Methamphetamine Awareness Day on November 30, 2006.

WHO USES METH AND WHY: Methamphetamine is also known as metamfetamine, dextromethamphetamine, methyl amphetamine, Nmethylamphetamine, desoxyephedrine, and (informally) as meth or crystal meth. It is a psychoactive stimulant drug that increases attentiveness and vigor. If taken in high doses, it can create a state of elation and enhance one’s self-esteem. Moreover, it increases sexual pleasure, which creates an elevated possibility for frequent abuse. Methamphetamine has been approved by the United States Food and Drug Administration for the treatment of ADHD and obesity. Methamphetamine (aka crystal meth) originated in some bewildering places. Military pilots were known to use this substance to stay alert during lengthy journeys to bombing locations during wartime. College students were known to use the drug to stay awake all night for exam preparation. The 1960s showed many individuals using this substance for entertainment purposes, until stringent laws surfaced in the 1970s that made the possession of amphetamines more complicated. Regrettably, however, use of amphetamines has once again imposed itself forcibly upon the population in recent years. Years ago, the use of meth was routinely linked with white, male, blue-collar workers. This profile has changed radically, and now includes a diverse range of racial and economic groups throughout the United States. According to Sandy Marte-Brouwer, an MA candidate in counseling and a community service worker employed by the Maryland’s Montgomery County Prison system, incarceration is one of the few ways that a meth addict can become “clean”. Staying clean, however, is another issue entirely. As stated by Brouwer:

apprehended on charges of possession of crystal meth. He was found with eight ounces and more than $10,000 in cash, and was charged with possession with intent to sell. Cameron holds a previous record, and was charged with purchasing drugs in 1999. Interestingly, the number of female meth users often appears to surpass that of male users. Females, particularly teenage girls, tend to be attracted to meth use because the drug acts as an appetite suppressant. It has been noted that high-concentration users have often lost over 100 pounds.

WHAT IS “METH MOUTH?”

“Voluntary treatment has not been very productive, and has a very low success rate, so many addicts tend to relapse. Crystal meth is extremely addictive, and users become hooked instantly because of its chemical makeup. I work with women who suffer with addiction. Their ages range from 18 to 69. The problem of meth addiction has created major devastation, managing (at times) to wipe out entire families. Treatment and recovery are extremely difficult.”

Prior to a meth user developing severe blood pressure issues or seizures, the individual often experiences decaying teeth. The drying up of the salivary glands as a result of meth use deprives the mouth and teeth of saliva’s bacteria-fighting safeguards. Additionally, a meth user might develop a strong desire for sweets. Sodas are a common remedy for satisfying this need, and can further aggravate the meth user’s unprotected teeth and gums. Grinding one’s teeth is a common symptom of “meth mouth”, as the user rarely takes the time to floss and brush his or her teeth.

Although crystal meth has been referred to as “poor man’s cocaine”, it transcends all strata of society. Recently, actor Michael Douglas’ son Cameron was

David Lowe, a British columnist, illustrates the haunting physical decay of the meth user in a case study concerning a young woman named Clea Myers: ABILITY 29

“After good results at boarding school and an Ivy League degree, the English Rose [Myers] followed her dream to work in Hollywood and had the world at her feet. But within months of arriving in Los Angeles, she plunged into the abyss of an addiction to killer drug crystal meth that was to last three years. Her career was forgotten, she had turned to crime and, as her prison mugshot shows, her features had been ravaged—she was emaciated and her eyes had a lifeless stare. Weighing just over six stone, Myers displayed rotting teeth, her skin was pock-marked and, inside battered trainers, her feet were constantly bleeding from her compulsive picking.” (The Sun, 13 Aug 2009)

SOME DAUNTING STATISTICS: Based on statistics reported by the 2005 National Survey on Drug Use and Health (NSDUH), approximately 10.4 million people age 12 or older have tried methamphetamine at some point in their lives. Additionally, an assessed 1.3 million stated that they had used methamphetamine that same year. The 2005 Monitoring the Future survey was created for the purpose of studying drug use and attitudes and reported the following: 4.5% of high school seniors had used meth, 4.1% of tenth-graders had used meth and 3.1% of eighth-graders had used meth. Admission to methamphetamine treatment programs represented 8% of all admission to drug rehabilitation in 2004. In 2002 more than a third of the country (21 states) reported high numbers of methamphetamine abuse as the primary concern at admission, a greater than 400% increase in ten years. Some experts say that it is impossible not to become addicted to crystal meth, and studies have shown that nine out of ten people who inject crystal meth just once will become addicted. In 2008, the National Survey on Drug Use and Health, found that 850,000 Americans age 12 and older had abused methamphetamine at least once in the year prior to the survey. Also that year, a NIDA-funded, Monitoring the Future Study reflected that 1.2% of 8th graders, 1.5% of 10th graders, and 1.2% of 12th graders had abused methamphetamine at least once in the year prior to having been surveyed.

THE EFFECTS OF METHAMPHETAMINE: Methamphetamine is a powerful central nervous system stimulant that affects the body’s mechanisms for regulating heart rate, body temperature, blood pressure, appetite, attention, mood, alertness and panic responses. It can be ingested in a variety of ways including swallowing, snorting, smoking, anal injection, and injection into the urethra. Snorting generates a more immediate high than does swallowing and smoking generates a more immediate high than does snorting. Meth alters the user’s mood in various ways, creating a reaction that is largely dependent upon the individual and how the drug is administered. The immediate 30

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outcome after smoking meth or injecting it intravenously is a powerful charge or “spark” that lasts for only a few minutes. This reaction has been described by users as extremely satisfying. In contrast to this method, snorting or swallowing meth produces a state of euphoria. This altered state can be described as a “high”, but is not necessarily a “rush”. The effects of smoking and intravenous injection of meth are immediate. Smoking meth produces results within three to five minutes, while oral injections can take up to 20 minutes to produce a high. The pleasing effects of crystal meth vanish very quickly. For this reason, greater and greater amounts of meth and an increased rate of recurrence are crucial in order for a user to sustain the ultimate “high”. Hard-core meth users participate in what is known as “binge” behavior. This conduct can “play out” for days at a time. During this cycle, the individual often tends to sacrifice food, hygiene, sleep and other necessities. Research shows that methamphetamine misuse and reliance can be linked with long-term shifts in the brain’s electrical function. These changes in the brain are similar to those seen in people with degenerative brain diseases. Side effects commonly related to meth overdose include brain damage, meningitis, neurotoxicity, sensations that the flesh is crawling with bugs, compulsive picking and infecting sores, severe headaches, muscle breakdown, and kidney failure. There are currently no medications available to treat methamphetamine overdose.

MANUFACTURING CRYSTAL METH: Crystal meth is “cooked” in labs. These labs are often found in abandoned homes, warehouses, and kitchens. Household chemicals and solvents purchased in grocery and hardware stores, medications such as pseudophed, and ordinary items such as pots and pans are used to manufacture this killer drug. When these commonplace ingredients are combined, a toxic form of amphetamine results. The concoction often taints the air and can cause illness and death. It is also substantially unpredictable, and can easily detonate without prior warning. When meth labs are found and shut down, they must be properly dismantled by highlytrained hazardous materials units in order to protect homes and people.

METH REHABILITATION AND TREATMENT: Prevention strategies aimed at local communities are the most effective means of combating the methamphetamine problem. A holistic family approach appears to be more effective than approaches which focus just on one individual, as a positive support system is an integral piece of the healing process. Long-term cognitive behavioral interventions which are designed to alter thinking behaviors and increase coping skills are considered promising, but most short-term treatment

strategies have yielded little if any results, due to the drug’s deteriorating effects on the brain. One particularly therapeutic approach for meth rehabilitation is known as the “matrix model”—a behavioral treatment methodology that combines behavioral therapy, family education, individual counseling, twelve-step support, drug testing, and encouragement for non drug-related activities. The matrix model has proven to be effective in reducing methamphetamine abuse and contingency management interventions have been known to provide concrete inducements for treatment and for the maintenance of abstinence from the drug. Beverly McWilliams Jones, LICSW, is a Washington, DC based clinical social worker with 33 years experience in the mental health profession. According to Jones, very few meth users are able to overcome their addiction without intensive, long-term interventions. Jones views one’s social inabilities, environment, and personal chemistry as factors contributing to the problem of relapse. If an individual astutely avoids the issues that initially brought him to his addictive state, Jones says, he has a better chance for success at rehabilitation. One’s mental health, a desire to belong to a group, and feelings of inadequacy are some of the factors which frequently contribute to the initial use of substances. If a

person is presented with good interventions, motivation, and ample treatment for the client, then positive outcomes can often be achieved. In an attempt to curb meth production, some states have limited the purchase of over-the-counter pseudophed, one of the common ingredients in crystal meth. Additionally, measures have been taken to provide prevention messages to at-risk populations and law enforcement officials have become more aggressive in closing down neighborhood meth labs. However, all experts agree that the most effective way to thwart the crystal meth problem is to avoid this dangerous marauder at all costs. by Gale Alexander Kamen, PhD Publicly funded treatment facilities by State findtreatment.samhsa.gov Dr. Kamen is an Educational Consultant and Education & Training Specialist living in Washington, DC. She is the author of The Status, Survival, and Dilemma of a Female Dalit Cobbler of India, which can be found on amazon.com

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A N E X C E R P T F R O M CHAPTER 7

Asserting your needs with confidence and clarity I told my borderline wife over and over again how much I loved her, that I would never leave her, that she was a beautiful and intelligent person. But it was never enough. If a female salesclerk’s fingers brushed mine as she was giving me change, my wife would accuse me of flirting. Trying to fill the emotional black hole inside a BP is like trying to fill the Grand Canyon with a water pistol—except the Grand Canyon has a bottom. - From the Welcome to Oz Internet support community

ou can respond to someone with Borderline Personality Disorder (BPD) in two primary ways: like a sponge or like a mirror. It is common for the same person to react both ways—sometimes absorbing, sometimes reflecting.

STOP “SPONGING” AND START “REFLECTING” Some non-BPs absorb their BP’s projections and soak up their pain and rage (sponging). These non-BPs may be under the illusion that they are helping the BP. But in fact, by not reflecting the BP’s painful feelings back to their rightful owner (mirroring), they are rewarding the BP for using these defense mechanisms. This may make it more likely the BP will continue to use them in the future. People who act like sponges say they feel like they are trying to fill a black hole of emptiness inside the BP. But no matter how much love, caring, and devotion they provide, it is never enough. So they blame themselves and work even more frantically. At the same time, the BP feels the terrifying pain of the aching cavity and urges the non-BP to work even harder and faster at filling the hole. If the BP is the acting-out type, she may castigate the non-BP for being lazy or indifferent to her anguish. If the BP acts in, she may tearfully beg the non-BP to help end the suffering. But it’s all a diversion to keep the BP and non-BP from addressing the real issue: the emptiness belongs to the person with BPD, and the only person who can fill it is the BP. The emptiness belongs to the person with BPD, and the only person who can fill it is the BP.

STAY FOCUSED AND OBSERVE YOUR LIMITS Don’t get caught up in the borderline’s accusations, blaming, impossible demands, and criticism. Instead of soaking up the other person’s pain, try to: • Maintain your own sense of reality, despite what the other person says. 32

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• Reflect the pain back to its proper owner: the person with BPD. • Express confidence that the BP can learn to cope with his or her own feelings. • Offer your support. • Make it clear that the BP is the only person who can control his or her feelings and reactions. • Show by your actions that there are limits to the type of behavior that you will and will not accept. • Communicate these limits clearly and act on them consistently. You may also need to take steps to protect yourself or your children—not because you are judging or labeling anyone else’s behavior, but because you value yourself and your feelings. These steps might include: • Removing yourself or your children from an abusive situation. • Letting the BP take responsibility for his or her own actions. • Asserting your own feelings and wishes. • Disregarding name calling or provocative behavior. • Refusing to speak to an enraged person. • Declining to let anyone’s public behavior embarrass you. • Simply saying no.

WHAT IS YOUR BOTTOM LINE? You must know your own bottom line for different types of situations. It may be helpful to think through what you would do if anyone else besides the BP were to act toward you in the same way. For example, what would you do if a stranger in the grocery store began talking to you in the same way the BP in your life does? If you would take steps to stop a stranger from treating you in this way, why not take steps to stop the BP from doing the same? If you’re concerned about the BP’s behavior toward a child, what would you do if your child’s teacher behaved toward your child like the BP does? Which do you believe is more potentially harmful: abuse from a teacher or abuse from a caretaker? Another way to think about these tough issues is to consider what advice you would give to a friend or loved one in your situation. Then ask yourself: is any of this advice applicable to you as well? Avoid the words “all” or “never.” Instead of thinking everything is “this way or that way,” come up with three more alternatives. If you find that you feel helpless in these situations, you may wish to work with a therapist to explore and set personal limits. This should help you in all your relationships-not just the one with the BP.

STRATEGIES TO HELP YOU REFLECT OR “MIRROR” BPD BEHAVIOR There are some specific strategies that you can use

while talking to an upset BP that can help you reflect BPD behavior instead of absorbing its effects:

1. Breathe deeply. When stressed, people have a tendency to take shorter and shallower breaths. The fight-orflight reaction kicks in, and it becomes hard to think logically. This can happen to the person with BPD as well. Taking slow, deep breaths can help you settle down and think logically instead of simply reacting emotionally.

2. Keep seeing shades of gray. Often, non-BPs pick up the borderline defense mechanism of splitting, or seeing things in black and white. Keep in mind the subtleties inherent in all situations. Don’t get drawn into the other person’s extreme reactions; trust your instincts and form your own judgments. 3. Separate your feelings from those of the person with BPD. BPs often use projection to try to get others to feel their feelings for them. You may need to keep checking yourself to determine whose feelings are whose. If you start to feel helpless or angry, is it because the other person is projecting his or her own helplessness or anger onto you?

4. Validate your own opinions and keep an open mind. The BP may state “facts” you know to be untrue or may assert opinions with which you strongly disagree. Yet, people with BPD can be perceptive. So objectively consider what the BP is saying. If, after reflecting, you still disagree, then remind yourself that

your version of reality is equally as valid as anyone else’s. Your feelings need to be validated just as much as those of the person with BPD.

5. Be aware of timing. There are good and bad times to bring up certain subjects. If, for any reason, the BP is feeling rejected, abandoned, or invalidated by other life events, he or she may react strongly to what you have to say. So you may want to postpone the conversation for a calmer time.

6. Be aware of your own moods. If you are feeling vulnerable, lonely, or sad (or even tired or hungry) you may wish to wait until you are feeling stronger.

7. Remember that you have a choice about your feelings. The choice of how someone feels is largely up to him or her. If the BP says, “You’re the worst mother in the world,” you can choose to believe it and feel guilty or you can depersonalize these words because you know they’re not true.

ACKNOWLEDGE BEFORE DISPUTING People with BPD may unconsciously revise their version of the facts to fit their feelings about a certain situation. While it may be tempting to argue about the facts with a BP, doing so neglects the real root of the issue: the BP’s feelings. Consider the following example of how to address the BP’s feelings without agreeing with or arguing over his or her version of the facts. ABILITY 33

Fact: Cynthia, the mother of a borderline teenager, Jessie, occasionally has a glass of wine at night when a friend comes over for a visit. Feelings: When Cynthia has friends over, Jessie feels ignored, depressed, and angry. Jessie’s “Facts”: Because of shame and splitting, Jessie doesn’t take responsibility for her own negative feelings. Instead, she accuses her mom of causing them, actually convincing herself that Cynthia has a drinking problem. To Jessie (and other BPs), if an explanation feels right, it is right. Facts that don’t fit the BP’s theories may be denied or ignored. If Jessie accuses her mom of being an alcoholic and Cynthia immediately begins defending herself (a natural response), Jessie will interpret this to mean, “You are wrong and bad for feeling this way.” Don’t get drawn into the other person’s extreme reactions. Trust your instincts and form your own judgments. By addressing Jessie’s feelings before disagreeing with her facts, Cynthia will be able to share her version of reality at a time when Jessie is more open to hearing it. In the example that follows, notice how Cynthia allows Jessie to fully express her feelings before she presents the facts as she sees them. Cynthia doesn’t begin by addressing whether she is or is not an alcoholic, because that would be dealing with facts. In Jessie’s borderline world, feelings are all that are important right now. Jessie: (angrily) You’ve been drinking out here on the porch with your friends for hours. You’re just a drunk! Cynthia: You seem angry and upset. Jessie: You bet I am! How would you feel if your mother was an alcoholic? Cynthia: (sincerely) I wouldn’t like it at all. It would make me feel scared and worried that she wouldn’t be able to take care of me. Is that how you feel? Jessie: I’m just mad! I am calling the child-abuse hotline tomorrow. I’m telling them that my mom lies around the house drunk all day! Cynthia: No one would want a mom who lies around the house drunk all day. It sounds like that’s what you think I do. You have a right to your own feelings and opinions. I see things differently, though, and I also have a right to my feelings and opinions. The way I see things, I am quite busy all day, and I drink pretty infrequently. And when I do, I don’t do it to a state of drunkenness. I don’t feel drunk right now, and I don’t believe I’m acting drunk either. Jessie: You’ve had too much to drink. You’re acting just like Grandpa when he is drunk. Why do you need to sit 34

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around the house with your friends? I hate your friends. They’re just a bunch of stuck-up bitches. Cynthia: I know you don’t like my friends. You have a right to your opinions about them. We don’t always have to like the same people. Jessie: I don’t see why they have to come over all the time. Cynthia: I know that it seems to you like they’re here all the time. Actually, I haven’t seen Ronnie and Marta for several weeks. I have a good time with them, and I also have a good time with you when we go shopping and do stuff together, like yesterday when we went to pick up your dress for the prom and stopped for hamburgers and milkshakes. We had a good time, remember? Jessie: (calmer) Yeah. But I just wish you didn’t have to drink with them. Cynthia: (understandingly) Yes, I know you don’t like it. Notice that Cynthia reflects Jessie’s feelings without agreeing that drinking is the same as being drunk. Of course it’s frustrating to be the subject of wild accusations that don’t make any sense. It’s not fair. Cynthia may go upstairs and grit her teeth with a knot inside her stomach. She may wish that Jessie lived somewhere else. But she has succeeded in talking with her daughter about the real issue that’s upsetting her. In addition, Cynthia has expressed her own opinions and observations without invalidating Jessie’s. That’s quite an accomplishment. In these kinds of situations, it’s helpful to remember the developmental levels that you learned in chapter three. Jessie looks like a young adult. She sounds like a young adult. But emotionally, Jessie is a small, vulnerable child, feeling forsaken by a mother whom she believes doesn’t know or care she exists. But instead of crying for her mommy the way a toddler would, Jessie shouts and threatens. Her childlike feelings bring about very real adult consequences. Such is the nature of BPD. You may make things harder for yourself if you expect adultlike behavior from someone who is currently incapable of it or if you censor your negative feelings and scold yourself for having them. Expect the unexpected. Accept your feelings for what they are and know that they’re normal for people in your situation. See through the BP’s exterior and realize that right now, they may not be capable of what most people would consider “normal” behavior. bpdcentral.com

n our continued effort to recognize corporations that share in the core philosophies that drive this publication, ABILITY Magazine is pleased to single out two businesses that show a high dedication to inclusion of people with disabilities as both clients and employees. With this issue, we bestow our Best Practices Award on two giants in their respective fields who demonstrate that big business need not overlook the ability of the individual.

MORGAN STANLEY As a leading global financial services firm, Morgan Stanley has distinguished itself by seeking out and creating rewarding employment opportunities for people with disabilities. The company also ensures that those same individuals have equal opportunity to take advantage of Morgan Stanleyâ&#x20AC;&#x2122;s considerable financial expertise. Each of Morgan Stanleyâ&#x20AC;&#x2122;s financial products are made available to people with speech or hearing difficulties, and the company also provides a Telecommunications Relay Service by which to communicate with clients who are deaf or hard-of-hearing. Morgan Stanley has supported a wide array of disabilityoriented organizations, including the Center for Disability Services, the Christopher and Dana Reeve Foundation, and the March of Dimes. Its continued efforts to increase opportunity and inclusion for people with disabilities have helped to set this celebrated firm apart from its competition in our diverse corporate marketplace.

SHELL A widely-recognized and far-reaching group of petrochemical companies, Shell has created opportunities for people with disabilities by way of its Shell/Island Jaycees Scholarship for the Disabled. Established in 1981, the scholarship has benefited schools, parents and students by motivating people with disabilities to reach their fullest potential and break social barriers. The company also bestows an annual Outstanding Disabled Student Scholarship Award and a Best Progress Award to students with disabilities who demonstrate extraordinary academic progress. At its Malaysia branch, Shell recently unveiled a corporate calendar which features artwork by twenty-three children from the Dyslexia Association of Malaysia. The artistic creations were developed under the guidance of renowned Malaysian artist Yusof Gajah and are intended to convey messages of harmony. The works of art will be auctioned off to highest bidders among Shell employees, in an effort to raise funds for the Dyslexic Association of Malaysia. Shell has also launched Project Awaz that provides employment opportunities for deaf adults at Shell stations throughout Karachi. Through such efforts, Shell continues to demonstrate its unique dedication to the rights and potential of people with a variety of disabilities. abilitymagazine.com

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he scene is quiet. A few dust clouds drift up, and the sun breaks through them as a blurry haze against the horizon. It’s different from the last time.

The last time, there were bombs. There were bullets. There were cries. There were aches and pains and memories that these black and white words won’t ever do justice. But this time is different. This time the soldiers are back on their own terms. Operation Proper Exit—a year-old initiative run by the Troops First Foundation and supported by the United Service Organizations—allows soldiers to return to Iraq as part of their recovery process, visiting the places where they were injured in combat. The veterans come from different ranks and different branches. They have different injuries, different recovery goals and different timelines. But they all have one thing in common: they each want to close the book on a chapter in their lives. “Some of the wounded warriors had not heard or seen any blasts or gunfire since their arrivals,” said Staff Sergeant Julio Arredondo, who went on a recent mission with Operation Proper Exit to accompany his brother, Sgt. Juan Arredondo who was injured in Iraq. “Every warrior has his own reason for wanting to come 36

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back. One of the reasons that my brother wanted to return was to have the ability to walk out, rather than to be carried out. It’s really up to the individual to get out of the trip what he wants.” Juan Arredondo lost his left hand when an improvised explosive device was detonated near his vehicle on Feb. 25, 2005. He is now retired from the Army and enjoying the outdoors while visiting other injured soldiers. A considerable part of his psychological recovery involved getting out of his hospital bed and going back to the base in al-Ramadi where he served. Arredondo and eight other recovering soldiers were paired with host soldiers who helped armor them and carry their bags. The recovering soldiers were flown across Iraq to visit their respective injury sites—this was the fifth of six overall missions by Operation Proper Exit. In a surprise arrangement, Arredondo met up with his brother at the base and the duo toured the countryside together for the first time. It was an emotional expedition. “The visit to the site of their injury was an aerial flyover,” Julio Arredondo said, “but the mood of the Wounded Warriors was a mixture of excitement and

Top Left: Staff Sergeant Julio Arredondo (left) stands with his brother, retired Sergeant Juan Arredondo. Top Right: Juan Arredondo shows off his new arm. Bottom: Julio Arredondo (front, right), Juan Arredondo (back, third from left) stand with troops on Operation Proper Exit.

their own personal moments of replaying their injuries in their heads.” Julio Arredondo today serves in the 321st Civil Affairs Brigade out of San Antonio, Texas, and works with the 486th Civil Affairs Battalion from Tulsa, Oklahoma. The nine-year veteran said watching his brother experience the fly-over provided evidence that much needed closure was taking place. “As we flew over the site of his injury, Juan pointed out the location and then went silent for a moment,” Julio Arredondo said. “I thought to myself what it might have been like, going through what he had gone through at that time.” Operation Proper Exit recently completed its sixth mission to return soldiers to the site of their injury. The experience is good for the healing process, said Julio Arredondo, but also carries added benefits. “This program is important for both the injured warriors and the warriors currently serving in Iraq,” Arredondo

said. “It’s important for the injured warriors that they get back a missing piece of their daily lives. They get closure by going back to get what they need, to keep going and close the book. It does assist with the healing process. The reason it’s good for warriors who are currently serving is they get to ask questions to see what’s out there as far as assistance if they should get injured.” Julio Arredondo admits he has no first-person knowledge of how the fly-over affected his brother or the other soldiers who were injured, but says he did cherish the opportunity to be with his brother during this healing experience. “Juan and I were given the opportunity to travel in the country together, an experience we had always talked about but were never able to make happen until April of this year,” Arredondo said. “I do not have words to begin explaining our gratitude or what this meant to us.” by Josh Pate troopsfirstfoundation.org

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master in Tae Kwon Do with belts in Jujitsu and Aikido and experience as senior instructor in hand-to-hand combat at the Secret Service Academy, Mark Copanzzi knows a thing or two about self-defense. Today he heads the Secret Service’s Information and Resource Management Office, but takes a week each year to teach self-defense to people with disabilities.

ready for some hands-on training when it came to keeping others’ hands off.

Copanzzi complements his combat skills with genuine concern for those who have made sacrifices in service to the nation’s military. Each year, he travels to Snowmass Village, CO, to teach a course titled “Self Defense for Everyone” at the National Disabled Veterans Winter Sports Clinic.

Copanzzi’s class has become an annual hit at the clinic—sponsored by the Department of Veterans Affairs and Disabled American Veterans—and became so popular that Copanzzi had to add a second course. While some aggressive techniques are taught, Copanzzi routinely tells his eager students that the most important muscle in any fight is the brain.

For Mark Copanzzi, teaching self-defense to people with disabilities is much more than simply a job or a hobby. “My father has become blind and my son is serving in the Navy,” Copanzzi said. “It’s very personal for me.” Copanzzi inherited the Self-Defense for Everyone program in 2001—at the time, the class was primarily a lecture with a few minutes for questions. But it wasn’t long before Copanzzi had decided his students were 38

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“The students love it,” Copanzzi said. “When I first floated the idea, everyone was afraid someone was going to get hurt, but I knew I would never let that happen. I also knew if the class were to have any real value, then techniques would have to come along with theory.”

KNOW YOURSELF “The first principle I teach in my courses is self awareness,” Copanzzi said. “Avoiding conflict is the only certain way to survive it. You have to understand who you are and what is truly possible for you to do.” Acquiring knowledge of the self requires that the students assess how they present themselves to the world, not just recognize their physical capabilities and limitations.

LEARN THE TECHNIQUES Students in Copanzzi’s courses are happy with the mental exercises and valuable lessons, but the smiles truly break out when it comes time to practice technique. “I can’t train everyone to win, but I can train anyone not to lose,” Copanzzi said, “because when dealing with your life, losing is just not an option. The key to any real fight is to survive the moment. Protract the fight by yelling and using items such as a cane or piece of a wheelchair to keep an attacker at bay. Criminals only have a short amount of time to commit a crime before they have to move on. Make the struggle not worth their time.” Much of Copanzzi’s technique focuses on teaching the veterans to be masters of their space—a style similar to that used by boxers or wrestlers. The training demands that each student knows the limits of an opponent’s reach, as well as his own, to be effective. Copanzzi also teaches the veterans how to break out of holds should their attackers prove impossible to keep at bay. “People in a fight are eager to get to the point where they can grab you,” Copanzzi said, “but once they are fully extended to do that, it takes little effort to turn the tide on them,” Copanzzi demonstrated the principle by stretching his arm out to grab the shoulders of one veteran who uses a wheelchair. The veteran was then instructed to clamp his head down forcefully on Copanzzi’s hand and turn his wheelchair. Coppanzi was left with no option but to follow his twisting elbow and break the hold.

DON’T BE THE VICTIM Copanzzi says that while a little self-confidence is important, it should never be taken too far. “When approaching intimidating crowds or suspected criminals, it’s instinctive to turn your eyes away or put your head down,” Copanzzi said. “But that is exactly what will mark you as an easy victim. Even a friendly ‘Hey, what’s up?’ as you pass someone suspicious can ensure you are not a target. But don’t make eye contact. That could be interpreted as a challenge.”

KNOW YOUR SURROUNDINGS Copanzzi uses examples from having trained Secret Service agents to help his students constantly assess and adapt to their surroundings. He has his veteran students visualize their homes and imagine “what-if” scenarios so they can be prepared in a variety of unsafe situations. “We explore things students can do to secure their homes and themselves in their daily routines,” Copanzzi said. “It can be as simple as taking the most well-lit path, knowing the safest public transportation times, and really being aware of the layout of their neighborhoods. It makes a difference. Fortune favors the prepared.”

“I don’t feel defenseless anymore,” said Edward Wright, an 80-year-old Air Force veteran with paraplegia. “Nobody is going to jump me now, or if they do, they will regret it. I will even teach my wife.” For Copanzzi, the unique interactions with each of the veterans provide the biggest thrills of the clinic. “I can teach tips and techniques for different scenarios, but the techniques are just tools,” Copanzzi said. “They need to be adapted to each veteran’s abilities. I get thrown now and then by how clever some of these veterans have proven to be at adapting a technique for their use.” Copanzzi says he doesn’t see a point at which he would want to stop teaching his courses. He loves empowering veterans who seek his skills, and he craves the inspiration he has learned to expect from his students. “The first couple years of teaching, I was heartbroken and pitied my students,” Copanzzi admitted. “But I have learned that the veterans at this clinic are the definition of tough. They carry a light inside them and they come ready to mix it up. They just amaze me.” by Ryan Strinbach wintersportsclinic.va.gov

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n January 2010, the US Federal Drug Administration (FDA) approved AMPRYA (dalfampridine) extended release tablets to improve walking capabilities for patients with multiple schlerosis (MS). In clinical trials, patients who took AMPYRA had faster walking speeds than those who received a placebo. AMPYRA is the first drug that the FDA has approved for this purpose. This is exciting and promising news for people with MS, whose mobility is often very restricted by the effects of the disease.

Cooper: Are you saying that the myelin can actually regrow and that there would be no scarring?

AMPYRA is a product of Acorda Therapeutics, a biotechnology company based in Hawthorne, NY. Acorda’s stated mission is “to develop and market therapies to restore neurological function in people with spinal cord injury, MS and related conditions of the nervous system.” Recently, ABILITY Magazine’s editor-in-chief, Chet Cooper, talked science and corporate compassion with Tierney Saccavino, senior vice president of corporate communications for Acorda Therapeutics.

It doesn’t work for everybody. We haven’t been able to predict who will see a good result and who won’t, but we believe that has to do with the fact that some people may have too many areas of demyelination, or the little demyelination tracks may be too long, so, even with the drug, the electrical impulses can’t continue on their paths.

Chet Cooper: Tell me about how this drug works. Tierney Saccavino: My boss describes AMPYRA as a “liquid bandage.” People with MS are disabled primarily due to demyelination, which is the stripping of the insulation around the nerves in the brain and spinal cord. The best analogy is that of an electrical wire that’s intact, but on which the insulation is stripped. When that happens, you get a short circuit. Even though the wire is there, the electrical impulse can’t be conducted without insulation. You have bundles of nerves in the brain and spinal cord, and they are surrounded by packets of myelin, a sort of white, fatty insulation. In MS, the immune system causes the myelin to become damaged and worn away, and that causes a short circuit, because the insulation’s gone. The electrical impulse can’t be conducted any more. 40

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Saccavino: No. When we say our drug is more like a liquid bandage, we mean that, while it’s active in your system, it temporarily covers the areas that have been destroyed. It eventually wears away, which is why you have to take a pill every 12 hours. But while it’s active in your system, it does cover over those exposed areas and allows the electrical impulses to continue on.

Cooper: The typical MS drugs— the ABCs (Avonex, Betaseron/Betaferon, Copaxone) or CRAB (the previous plus Rebif)—they don’t have this capability? Saccavino: No. They do something very different. The currently approved immunomodulator drugs slow the progress of the disease. They stop the immune system from attacking itself. Cooper: What I’m hearing, then, is that people would stay on their regular regime, because they want the immune system not to attack, and this would be an added value to mitigate the symptoms that might have occurred already from the reduction of myelin? Saccavino: That’s exactly right. In our clinical trials, we found that people who were taking the immunomodulators had the same chances of responding well as those who didn’t. This was true no matter what kind of MS you had and no matter how long since you’d been

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diagnosed. So, it seems as though pretty much everybody has an equal chance at having a good response. A patient with MS can certainly continue to take it along with existing immunomodulators.

Cooper: When you talk about his physician knowing about the drug, how does that work? Who are your target markets and how do you get the message about the drug to those markets?

Chet Cooper: AMPYRA. Does that mean anything?

Saccavino: We’re targeting neurologists who treat multiple sclerosis. For the launch, we doubled the sales force we had in place, for a total of 100 people in the field. We believe that number of sales people will be able to reach the vast majority of those physicians.

Saccavino: Not that I know. I think it is derived somewhat from the “amp” in Fampridine. Cooper: It was previously called—?

Cooper: And you’re talking to the MS societies? Saccavino: It was originally called Fampridine, which is the former USAN, or US Adopted Name. The chemical name is 4-aminopyridine, and the FDA asked us to change it as we were approaching approval, because they thought that there might be some confusion between Fampridine and the USAN name of another product. So we agreed to change it to Dalfampridine. Cooper: Had Fampridine been on the market before? Saccavino: It had not. It has certainly not been approved by regulatory authorities in the US before, and to my knowledge, not anywhere in the world. Compounding pharmacies have made it with raw ingredients for some time, but those formulations are not at all like ours. Cooper: Are you saying that this drug has not been used by people with MS before now? Saccavino: In clinical trials it has. And 4-aminopyridine, the chemical compound, has been used by prescription through the compounding pharmacies I mentioned. Scientists and physicians have been aware that this chemical compensates for demyelination for a couple of decades. Cooper: And that compounding formula would not have the same results as AMPYRA? Saccavino: In terms of results, I don’t know. Compounding is an unregulated industry, so there are no reports on results. But we can tell you that the FDAapproved formulation of AMPYRA is a very highquality, stable, extended release. Cooper: I interviewed the actor, David Lander (“Squiggy” on Laverne and Shirley) for the last issue of the magazine. He has MS and was having some real struggles getting through the day without a walker or wheelchair. It would be cool if this thing worked for him. Saccavino: It’s really such an awful disease, and you hear regularly from people that the effect it has on walking is probably the worst part. It really affects every area of their lives. So I hope that he does have a chance to take it. I hope his physician will be familiar with it and will think that it might be appropriate for him. I certainly hope he has a good result. You can tell pretty quickly.

Saccavino: Yes. Cooper: And of course you’re going to have to go global on this. Do you make this, or do you license it? Saccavino: We licensed the formulation from Elan Pharmaceuticals, which continues to manufacture it for us. We held the worldwide rights to develop this product. We then licensed the rights to develop it outside the US to Biogen Idec. So, Acorda maintains the rights to develop and market it in the US, and Biogen Idec will develop and market it in all non-US markets. Cooper: When does it actually launch? When you say “launch,” that means the physician can actually prescribe it? Saccavino: That’s exactly right. We expect that to be in March. [AMPYRA was released on March 1, 2010, as expected. This interview was conducted shortly before that date.-Ed.] This product will be distributed through specialty pharmacies, which should be a substantial benefit to the patient, because that’s how most of their current MS drugs are delivered to them. The physician writes a prescription and submits it directly to the specialty pharmacy. The specialty pharmacy will have a desk with customer service folks who can work directly with patients’ insurance companies to make sure they get coverage. We will also have co-pay mitigation, so that if a patient has a very high co-pay, we can manage that for them on the front end so they won’t have to deal with it. Then we’ll send their prescription to them. We’ll also have a patient assistance program for people who are not insured to make sure that they have access to the drug. Cooper: Do you work with a trade association for help with administering your patient assistance program? Saccavino: We’re a pretty small company right now, with just over 200 people, so we are working with an outside expert for our patient assistance program. We are collaborating with them quite closely because we are very committed to ensuring broad access to the treatment. ampyra.com ABILITY 43

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est known for her role as wise-cracking radio show producer Roz Doyle in the Emmy Award-winning series Fraiser, actress Peri Gilpin has lent her recognizable face and voice to the fight against sarcoma by way of The Sarcoma Foundation. After losing her mother to leimyosarcoma in 1997, Gilpin has become an advocate for raising public awareness about the condition and has also worked closely with the National Breast Cancer Coalition on issues of womenâ&#x20AC;&#x2122;s health. Gilpin sat down with ABILITY Magazineâ&#x20AC;&#x2122;s Chet Cooper for a discussion about cancer, parenting her twin girls, and her past and present work in television.

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Gilpin (left) with co-star Candace Cameron Bure on the set of Make It or Break It.

Chet Cooper: Tell me a little bit about how you first got involved with The Sarcoma Foundation. Peri Gilpin: Years ago, I did an interview about my mother for a publication called Info magazine, and during that interview I told the reporter about my mother’s leiomyosarcoma. She had had a hysterectomy, but at the time of it the doctors didn’t even think to look for sarcoma. Later it was discovered in her spine—it had lain undiscovered for years—and because of it she lost at least two vertebrae during her first emergency surgery. My mom battled cancer for about 15 years, and my sister was diagnosed with it last February. Anyway, I was telling the story about my mother’s leiomyosarcoma in this interview for Info, and was later contacted by a woman in New Jersey who’d said, “Your mother’s story is exactly like my mother-in-law’s story.” Then I got a phone call from The Sarcoma Foundation of America, asking me if I would be involved with their organization. And I said yes. Everyone needs all the awareness of sarcoma they can get. Twelve thousand people get diagnosed a year. That’s too many. One percent of cancers are sarcomas, and about 15% of pediatric cancers are sarcomas. 46

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Cooper: Sarcoma in general is still pretty rare. Gilpin: It is, but the really good thing is that awareness of it seems to be improving. In the 25 years between my mother’s diagnosis and my sister’s diagnosis, the situation is night and day. When my sister went into the hospital with this strange thing on her spine and lost two vertebrae, just as my mom had, doctors knew to look for leiomyosarcoma, and that is what it turned out to be. Cooper: Your sister’s reason for going into the emergency room was a growth on her spine? Gilpin: My sister went into the hospital on Valentine’s Day in terrible pain. Her doctor—who had also been my mom’s doctor, although not my mom’s oncologist—saw something on my sister’s spine and said, “You need to go straight over and get either an MRI or a PET scan.” So she was in a hospital getting an MRI and then an ambulance rushed her over to another hospital to remove two vertebrae. My mom had gone through the same thing: checked herself in on a Friday night and said, “I just can’t take the pain.” Cooper: She’d had pain in that area before, but nobody could identify what that was?

(l to r): Ayla Kell, Gilpin and Neil Jackson on the set of Make It or Break It.

Gilpin: Right. And while they were preparing her for a CAT scan that night, the cancer sort of clamped down on her spinal cord. She looked right at the doctor and said, “I’m shutting down. I’m dying. I can feel everything stopping.” She said the doctors picked her up, got her on a table and took her in, and when she came out, she was short a few vertebrae.

Gilpin: Not much. My mom was 42 when she was diagnosed and my sister was 45. But I think my mom had had the sarcoma for years and years because she’d been in horrible back pain since her late thirties. I would guess that my mom was going through stuff for four years before doctors were able to diagnose it. In the case of my sister, doctors were able to diagnose quickly because of my mom’s history. They knew what to look for.

Cooper: Was she able to walk after that? Cooper: Is there a suggestion that sarcoma is genetic? Gilpin: Nobody had thought that she would, but she did, for 15 more years. She went through several more procedures, lost more vertebrae in her lower spine, had a rod inserted, had bone grafts done, and had many more surgeries after that. She lost a third of a lung to a tumor and went through all kinds of hell. My sister, on the other hand, was diagnosed immediately. Doctors told her, “We don’t even really recommend chemotherapy.” So she’s only gotten Themera—which is an oral form of chemo with very few side effects—and now she feels okay. There’s still a little bit of cancer left, but the Themera’s working. Her prognosis is excellent, from what everyone has said. Different from the case with Mom. Cooper: What was the age difference between them at the time of their diagnoses?

Gilpin: No, but there aren’t studies to definitively prove one way or the other. It’s so rare, first of all, so doctors haven’t been able to study it as much as they’d like to. But I think any time there’s a mom and a daughter with the same rare sarcoma, you’ve got to wonder if there’s something going on. Cooper: What about your profession? Did you get into acting because of your mother, of genetics, of natural ability? Gilpin: Oh, sure, I think all of that. My mom and my dad kind of came by it naturally. They were extroverts, I would say. But I was very shy growing up. My mom always said, “I can’t believe you even want to be an ABILITY 47

actress. You don’t like anyone to look at you or talk to you.” I guess I got over all of that. I didn’t know that I wanted to do it, I just liked studying acting and I got hooked as a kid.

that someone’s got to be in charge. You also have to trust that the child has a guide, too, inside herself, and that she can find her way with your help. It’s about mutual respect now—offering support, listening to them, loving them, all of those things.

Cooper: What was your first hook? The theatre? Gilpin: Yeah. I grew up in Dallas and performed at the Dallas Theatre Center when I was a little kid. We’d perform as the characters from Charlie Brown. It wasn’t that play, You’re a Good Man, Charlie Brown, we were just performing as the characters and made up our own play. There was a lot of theatre work in Dallas, actually. I studied at the Dallas Theatre Center for years as a child, went to classes there, and then I went to the University of Texas to study drama. I also went to school in London at the British American Dramatic Academy, which is a really wonderful school. Then I went to New York for a while and studied theater with a lot of great people there before I came out here to L.A. Cooper: And Frasier was your big breakthrough? Gilpin: Yeah, for sure. And I still see everyone from that show today. Jane Leeves lives two doors down from me, her child is my goddaughter, and my kids are her goddaughters and my kids are in kindergarten with her son, who I love. She’s a dear, dear friend. I just emailed David [Hyde-Pierce] yesterday, I think. John [Mahoney] and I talk all the time. Kelsey [Grammer] is a great friend. No one in my world has the same job for 11 years, so what we had together is very rare. And once you’ve been through that together, you’re family.

I just did an interview for The Wall Street Journal, and in the article this child psychologist said, “With the way parents are showing their love and treating their children, why wouldn’t the kids love them back? Why would they rebel? These are about the nicest people in the world.” The best parenting comes from being involved and trying to figure out what your kid needs and caring and not going by a set of rules that applies to everyone, but operating from really individualized care for your kids. Which, strangely enough, is what we also want in our medical care. Individualized care. I was very much involved with the National Breast Cancer Coalition [NBCC], and the reason why I was involved with them, and I love them, and the reason I’ve actually lobbied in Washington for them, is because they really teach women what’s going on within the government in respect to women’s health issues and they show us how to make our votes count. I think they got something like $50 million in defense funds as late as last year. It’s an incredible organization, incredibly well organized. Cooper: That’s interesting, because it seems that so many health studies today are male-oriented as sort of a one-size-fits-all approach. But there are so many obvious differences between the genders, so that sort of approach seems counter-productive. My uterus is so different from yours.

Cooper: What is the show you’re working on now? Gilpin: It’s called Make It or Break It, for ABC Family. I play the mom of a young gymnast who is the best in the country—America’s most elite athlete in gymnastics. I keep waiting for my episode where I have to go in for her. (laughter) The show actually follows four girls, which is one of the fun things about it. It’s really interesting, because there’s an authentic quality to the way these young girls talk to each other, and an authentic quality in the way they talk to their parents. Parenting is so different now from when I was a kid. There seems to be a lot more involvement between parents and teens. I have six-year-old twin girls, and I know the way I raise my children is so different from how my parents raised me. My mom was a schoolteacher and a lovely mother, but she had to go to work every day. Today, somehow, I think parents are finding ways to stay really involved in their kids’ lives, even if they are at work. Cooper: Would you say that parents are more like friends and parents simultaneously for this new generation? Gilpin: Yeah, that’s a good way to put it. But you can’t just be the kid’s friend, you know? You have to maintain

Gilpin: (laughs) Exactly! I know! My mom once said, “I didn’t realize I had to make friends with my cancer. I couldn’t pretend it wasn’t here. I needed to find out everything I could about it.” So when I went and lobbied with the NBCC, that was the story that I told. I think things are improving now, though. There seems to be more comprehensive communication between the pathologist, the oncologist, the radiologist, and between all the different elements of cancer care. Also, so much more information is available now than before, but you have to do your homework. I was on a birth control pill for a while called Yaz, and somebody told me, “People get headaches from that, there are these side effects, it’s a horrible thing.” So I went and looked Yaz up, and I realized that all of the problems people were discussing online were being generated by a class-action lawsuit. There wasn’t one medical website that had anything bad to say about Yaz. In fact, a Stanford gynecologist had written online about breaking down all the birth control methods and had shown that Yaz was right up there with any other birth control pill you could take. ABILITY 49

(l to r): Gilpin, Ayla Kell and Brett Cullen on the set of Make It or Break It. In this scene, it appears someone “broke it”.

That sort of thing is part of the reason why I want to do interviews like this one. You have to have known somebody who was sick for 15 years to have any full perspective on sarcoma, I think. I watched my mother go through the most horrible things, and I talk about it publicly because I hope people will become more aware and listen to their bodies and pay attention and not be afraid to go to the doctor. And if you hear a buzzword that you don’t understand, ask a professional, go online, call the doctor, look it up. Keep doing research and find out what you can. I see my health as my responsibility. I have six-year-olds. I want to be around. I don’t want to go anywhere. Cooper: Do you have an exercise regimen? Gilpin: I see an acupuncturist for some back pain, and I have a wonderful non-directional-force chiropractor who has really helped me a lot. I used to kickbox, but I don’t think that was too good for me, so I do a lot of walking, running, jogging, and low-impact things. Jane Leeves and I used to work out at the same gym and we 50

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would imitate each other while we exercised, but Jane’s body is in a lot better shape than mine. Cooper: Has Make It or Break It inspired you to get your kids into gymnastics now? Gilpin: Well, they’re both really athletic, but they’re in kindergarten so— Cooper: So it’s too late already? Gilpin: (laughs) No, they’ve done some gymnastics, some ballet, and they’re doing horseback riding now. That’s a lot for their age, and they’re in school from eight to three. So now we’re just doing swimming on Tuesdays and Thursdays, cheerleading club on Friday, and horseback riding on Saturday. I want to introduce them to everything and see what they really love. To me, that’s one of the really exciting things about being a parent. curesarcoma.org

e at ABILITY Magazine have reported on various cancers from time to time, most of which have been fairly familiar to our readership. Sarcoma, however, is a less well-known type of cancer that is nevertheless worthy of serious discussion. Put simply, sarcoma is cancer of the body’s connective tissues. As their name suggests, connective tissues’ primary function is to cover and hold other tissues together. They exist between organs and around various structures like muscles, tendons, blood vessels, and nerves. Since most connective tissues are “soft” tissues, most sarcomas are commonly called “soft tissue sarcomas”. It is not impossible, however, for sarcomas to arise amidst hard tissues like those of bone or cartilage. Sarcomas are assigned special names depending on the nature of the tissue from which the cancer arises. For example, sarcomas that form from muscles in the extremities are called “rhabdomyosarcoma”, while those that form amidst blood vessels are called “angiosarcoma”. Regardless of the location of the cancer, symptoms and treatments of most sarcomas are similar from case to case. The cells from which the cancers arise are also similar, no matter where in the body these cells happen to be located. This is the reason why tumors that occur in so many different locations of the body are all referred to as sarcomas. About 45% of all sarcomas occur in the extremities and another 35% occur in the internal organs. As is the case with most cancers, the exact cause of sarcoma is unknown. However, sarcomas have frequently been associated with exposure to radiation (including radiation used to treat certain cancers) and various chemicals. It should be noted, however, that the doses of radiation used in treating cancers are carefully modulated to avoid development of sarcoma in a patient. Nevertheless, in some rare cases, patients have developed sarcomas many years after being treated with radiation for another cancer. Chemical culprits commonly associated with the development of sarcoma include vinyl chloride, arsenic, and certain herbicides, most of which have long been

removed from most storebought products. Certain genetic alterations have also been identified for development of sarcomas, such as loss of the “tumor-suppressor” gene known as “p53”. Sarcomas are also associated with the genetic disease known as Neurofibromatosis Type I or Von Recklinghausen disease. Another sarcoma, known as Kaposi sarcoma, occurs primarily in AIDS patients whose immune systems are incapable of fighting off a particular type of herpes virus. Sarcomas occurring in the extremities typically begin as non-painful lumps. It should be noted, however, that not every non-painful lump a person might develop is indicative of cancer. Moreover, since sarcomas can arise anywhere in the body, they may generate a myriad of symptoms. The diagnosis of sarcoma usually requires such common diagnostic procedures as x-rays, CT scans, and MRI scans. If a mass is detected, a biopsy—the surgical removal of a piece of the mass for study—is required to determine the exact nature of the growth. Treatment of a sarcoma is dependent upon its stage and grade. A cancer’s “grade” refers to the nature of its cells as they appear under a microscope during biopsy, and its “stage” describes the extent to which the tumor has invaded adjacent tissues or has spread elsewhere in the patient. This process of a cancer’s spread throughout the body is commonly known as metastasis. As is the case with many cancers, the treatment of sarcomas generally includes some combination of surgery, radiation therapy, and chemotherapy. Complete surgical removal of a tumor is confirmed by biopsies of the periphery of the area from which the tumor is removed. Just as with many types of cancer, most sarcomas are not cured, but are controlled with treatments for periods of several years. Novel treatments of sarcomas are continuously under research, requiring clinical trials or studies that employ experimental therapies on humans with the disease. by Thomas Chappell, MD cancer.gov ABILITY 51

Inclusion Films instructor Joey Travolta (left) works with writer-director Tyler Norman and staff on the short film Spud.

n his new short film Spud, 25-year-old filmmaker Tyler Norman makes use of bullies, Barbie dolls, and a burning building to create something entirely his own: a 1980s comedy for the 21st century. “It’s really inspired by a lot of the movies I watched growing up,” Norman said. “Films like Home Alone and Ferris Bueller’s Day Off and that sort of John Hughes comedy that is kind of different.” If there’s a theme or thesis to Norman’s Spud, it’s that different is, in fact, good. Introduced to us as a “terminal dweeb” with few friends and a preternatural gift for conquering video games, it isn’t long before the twelveyear-old central figure of Spud decides to don a superhero cape and right wrongs in his seemingly idyllic suburban neighborhood. In the process, he gains confidence, camaraderie, and the love of a good woman—or as many of those things as elementary school will allow. “My intention with the film was to show that people who are bullies are really the ones who have the problems, who have some kind of void that they need to fill,” Norman said. “Most of the bullying that I experienced in school was psychological, but on the first day of first grade one of the kids in my class slammed my head into a pole. I still don’t know why.” Nor does he seem to care. For Norman, who was diagnosed at an early age with Asperger’s Syndrome, talking about films is much more appealing than reflecting on the hardships of adolescence. And why not? Entertainment is in his blood. His father, Lowell Norman, was the primary filmmaker and photographer for musician John Denver, a connection that Tyler says allowed him plenty of access to filmmaking technology in his formative years.

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“I used to watch a lot of movies,” Norman said. “I still do. I never knew that’s what I wanted to do later in life, but I was around all this film equipment growing up, so my sister and my friends and I would make our own home videos and stage our own scenes. It was fun.” With Spud, Norman has come a long way from simple home videos. When his script attracted the attention of producer Joey Travolta at Inclusion Films, Norman suddenly found himself auditioning actors, managing his very first film crew, scouting locations, and negotiating first cut in the editing room. Now he’s sending some of his material off to talent agencies as the film works its way through the festival circuit. For Norman, the experience of preparing, producing and premiering Spud was largely uncharted territory. For Travolta, however, it was the latest in a string of successful teaching opportunities at Inclusion Films, a creative enterprise that’s part film school, part production company, and which trains aspiring filmmakers with learning and developmental disabilities in all aspects of the storytelling experience. By working in concert with crew and performers without disabilities, Travolta’s students learn the ins and outs of collaboration, socialization and artistic achievement. “The really nice thing about filmmaking,” Travolta said, “is that you’re essentially forced to work with other people. So for a lot of the students here, especially those dealing with autism, it’s a process of learning how to work with a team. Whether you’re making films or selling t-shirts, that’s a necessary skill to have.” Travolta, whose industry-oriented family includes brother John, founded Inclusion Films as a method of

Travolta, Norman and Raymond Martino (far right) engage students in the art of filmmaking.

merging his diverse filmmaking background with his student-oriented experience as a special education instructor. Today the Burbank-based company, replete with a staff of industry professionals and operating on a twenty-week semester system in the training of its students, remains dedicated to lending a megaphone to talented voices Hollywood too often ignores. The key to the program, Travolta says, is its capacity for equipping each student with social, technical and cinematic skills. “I had always wanted to do a practical film workshop for students who weren’t going to college but who wanted some real-world experience,” Travolta said. “You learn more by doing than by theory. Whether you’re making a movie for nothing or for a hundred million dollars, the organization of it and how you shoot it are important industry standards to learn.” Working alongside Inclusion Films’ line producer Bill Dion and creative director Raymond Martino, Travolta nurtures a formidable industry network that ranges from producer Fred Roos (The Godfather) to actor Joe Mantanga (Criminal Minds) to screenwriter Bobby Moresco (Crash), not to mention executives at Warner Brothers and other major motion picture developers. Those connections allow the staff of Inclusion Films to help place students on a path toward internships and paying work, each secure in a base of knowledge of how films are written, planned, edited and produced. “Some of these kids break down when the programs are over,” Martino said. “They cry, they say, ‘I don’t know what I’ll do without you guys.’ Often their parents will even ask if their son or daughter can stay longer. When you touch somebody’s life here, you touch it forever.” Martino, who struggled against learning disabilities as a child, often tells his students that limitations exist only to be shattered. “I didn’t learn to read until I was age twenty,” Martino said. “If I can make it, any of these kids can.” With programs in Burbank, Bakersfield and Northern California, as well as a slew of summer camps throughout the country, Travolta says Inclusion Films is now poised to take on its first full-length feature production as it continues to empower young filmmakers regardless of their

limitations or disabilities. For Michael Cooney, a former Inclusion Films student who now is a writing instructor for the program, the school has helped shed new light on what he’d always viewed as a personal hurdle. “I don’t think I’d be a writer if I didn’t have cerebral palsy,” Cooney said. “Growing up, I didn’t have a lot of friends and was left to my own devices, so I learned how to create stories and scenarios just to entertain myself. And I think I’ve come to figure out that when you’re different from everyone around you, the creative process kicks in out of necessity.” That ingenuity in the face of personal doubts or insecurities has reaped rewards for many of the artists at Inclusion Films, and continues to be nurtured by Travolta and his staff. “You find whatever the student’s strength is, and you try to build on it,” Travolta said of his school’s guiding philosophy. “It may be that there’s one thing someone is good at, but if he can be brilliant at it, if he can somehow make that work for whatever he does in life, then he’s in pretty good shape.” It would seem that, for Tyler Norman, the future is in pretty good shape as well. Spud has been honored as an official selection of the Garden State Film Festival and the ArtLife World Film Festival and recently held its Los Angeles premiere at the Leonard H. Goldenson Theatre in Hollywood for hundreds of attendees of various industry stripes. Better yet, Norman’s experience with Inclusion Films has infused the young filmmaker with the kind of confidence that can only come from full engagement in a personal passion. The kid who was once picked on in grade school is today hard at work revising his next masterpiece, a science fiction script titled Vermillion. “You don’t feel like there’s anything wrong with you when you’re doing whatever it is you love,” Norman said of his experiences on the set of Spud. “I’ve always loved movies, and for years I’ve studied every aspect of them, so I’m just really glad I was able to pull this one off.” inclusionfilms.com

by David Radcliff

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andy Pierce says it best: “You can’t choose to be someone’s inspiration.” His plan to climb the 48 tallest peaks in New Hampshire by the year 2020 isn’t motivated by a desire to be viewed as a hero. Rather, he plans to use the attention as a means to honor those people and organizations that have helped him reach the top. Pierce, who lost his sight in 2000 due a neurological disorder, has been climbing his entire life. Today he takes his guide dog, the Mighty Quinn, with him on each quest. In conjunction with his plan to summit “the 48”, Pierce created 2020 Vision Quest, an organization aimed at inspiring others through education and support. “I recently took a hike with Eric Weihenmayer,” Pierce said. “Eric is a blind guy who has done the seven summits—he hiked Everest and all of the summits on the seven different continents. I don’t know where he’d heard that I was undertaking hiking, but here’s a guy who I could talk with a little bit about it. It gave me some inspiration.” A native of New England, Pierce is an avid Patriots fan and was named the team’s fan of the year in 2001, which led to an Emmy-nominated HBO documentary based on his experiences. Pierce, who recently received his second-degree black belt in martial arts, is adamant that his disability not limit his opportunities. “I wanted to be sure that I didn’t get my black belt just because I was pretty good for a blind guy,” Pierce said. “I wanted to be appropriate for a black belt. And I have no doubt that I am.” Locally, Pierce served on the board of directors for the 98-year-old New Hampshire Association for the Blind

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(NHAB) after it was forced to lay people off due to the struggling economy. “They’re not in danger of going away,” Pierce said, “but they’re in danger of not having the resources to give people the same level of service that made a difference in my life. It was pretty clear I had to do something.” That “something” was to create 2020 Vision Quest. Pierce was recently named the first recipient of the $10,000 Teva Life Agent award for his adventurous lifestyle, and will use the award to help fund his goal to summit the 48 peaks. His endeavor will begin this summer with the tallest of the 48 peaks, Mt. Washington. He hopes this will give him a national platform from which to talk about how organizations like Guiding Eyes for the Blind and the NHAB have helped him. I recently had the opportunity to speak with Pierce about his honors, his hiking experiences, and his advocacy for people with blindness. JP: How did you get started hiking and climbing? RP: I grew up in New Hampshire. I was born in the southern part, but I moved to the northern part when I was young, maybe 10 years old. That’s a pretty deep woods area, right on the edge of Vermont, and Mt. Monadnock was probably a five-minute walk from my house. So I spent summers as a boy exploring that mountain and learning to climb. That planted the seed of my interest in climbing. I went blind a year after finishing college. I took a step back from hiking after that time, and I didn’t hike a lot in college. My condition is ongoing—I have a neurological disorder. I spent one year, eight months, 21 days in

a wheelchair because of damage to my cerebellum. When your ability to walk is taken away, it really highlights that you take some simple things for granted. As I worked my way out of my wheelchair, I began to use a hiking stick. That reminded me of this great passion I had when I was younger, and I began to think it was something I could get back into again. I did, and I found it pretty rewarding. I’m sure you can imagine the magnitude of going from not being able to walk across a room in your house to climbing to the top of a mountain. There’s a personal accomplishment in that. JP: Was hiking a goal for you, or did you see it as a reward for yourself after having gotten out of your chair? RP: It was a little of both, actually, and that mirrors my philosophy of life. You’ve got to set a lot of goals for yourself. You can set one great big goal and lay it out there, or you can set staged goals along the way. When I was in the chair, the long-range goal wasn’t “When am I going to be able to climb a mountain?” Once I’d determined what walking stick I was going to use in supporting myself, I decided I wanted to explore as much as I could. But I didn’t want to set a goal that was unrealistic, so there’s a sense of balance there. JP: Did you go through a training process before hiking again? RP: I did. The whole experience, I think, is training. I’m a fairly fortunate person in that I’m driven when I set my sights on things. When I was in the wheelchair, I used a squat machine so I could keep my legs strong. All along the way, I did physical therapy and had some pretty remarkable people working with me to help me improve my balance. Then I went to two totally different experimental levels of treatment for my balance. One was called the BrainPort, which is getting a lot of attention. The other was a surgical procedure called the transtympanic injection, in which doctors basically put steroids—similar to the ones Christopher Reeve used— into me to boost the signal from my inner ear. Would the brain be able to adapt? It turned out the answer was yes. After that, the regimen went up steadily and I took longer and longer walks. I couldn’t work with my guide dog while in my wheelchair, so when I got him back, that was a big leap for me because it signaled I was walking again. There’s no better therapy for learning how to walk than by just being able to do it. But I had to reach a point at which I could do it safely. JP: Can you explain the process of going on a hike for you? Do people go with you? RP: I do hike with people. I think community is an essential part of my life. One of the things you feel when you’re hiking is the strength of community. If five of you go on a hike together, you’re going to leave that

hike knowing a lot about each other because you have supported each other through something substantial. I’m a huge believer that we don’t plan to fail, we fail to plan. I really want to go into things with preparation and understand what I’m getting into. There have been some remarkable accomplishments in the hiking world by people with challenges similar to mine. For example, Bill Irwin did the Appalachian Trail with his guide dog, and he did it quasi-alone. He had a lot of support from folks who were hiking the trail, but he undertook the trail alone. That’s fantastic. But by his own admission, it would have been tragically unwise had he not had some of those helpful people supporting him. The first thing to make sure to iron out is to understand who is going on the hike, where you’re going, and to try to learn enough about the trail so you all feel prepared. That’s not only important for myself, but is also important because I’m hiking with a partner. I’ve got my guide dog with me. He doesn’t know the day before the hike that we’re even going on a hike. He’s not going to do any preparation, so I have to. I have to know if we’re going to come across water so I’ll have a source where we can refill. I have to know about water purification so that he and I are both getting good water. I carry water for both of us, which affects my pack load, my footwear choice—am I going to cross water and walk in wet boots, or am I going to have water shoes of some type? JP: So the rule of thumb is to do your research? RP: It’s preparation. Find out what is ahead and learn what you need to do to meet it properly. With trail maps, the wonders of the Internet and the general accessibility of everything, I can read a lot of details about what we’re going to find, which I can then transfer into my own form of preparation. Although I don’t want to overburden myself with details that aren’t necessary, I’d rather have a little more preparation than a little less. Recently, I was hiking in the White Mountains. They’re not huge by the standards of the Rockies, but they have a higher number of fatalities. The reason is weather— incredibly unpredictable weather. On Thursday of my most recent hike, a foot of snow fell on the very mountain that I climbed that Saturday when it was 70-plus degrees. You’ve got to understand what you’re dealing with. Looking at the National Weather Service online is part of that process. Bad weather didn’t mean we couldn’t go on the hike, it just meant we had to significantly change our preparation. JP: One of your next goals is to hike the 48 tallest peaks in New Hampshire with your guide dog, Quinn. Why did you set this type of goal? RP: They’re called “The 48”, and they’re pretty wellknown by frequent climbers. The 48 peaks are each over 4,000 feet by various standards. There are more ABILITY 55

might walk a guide dog from school to home if that’s possible. I wouldn’t do it with a fresh guide dog, though. You and your dog have to spend some time together before you can take on something so challenging. You have to make sure the dog is suited for it. My present guide, he’s going to help drive this goal of the 48 if he can climb every one of them with me. I figure he’s got about three to five years left of loving the climbing. We’ll put out a video soon of the last climb we did together. Good luck finding a spot on that video when his tail isn’t wagging. He’s delighted in it. He was worried about me in a few spots, but it was fun to do that together. I might try to squeeze these 48 into a shorter timeframe than the 10 years.

David Pierce and his best friend, the Mighty Quinn, taking a hike.

mountains that are higher than that, but they are either too close to other mountains or you don’t get down enough from the other range. Because I live in New Hampshire, those are the most locally accessible mountains to me as a first-step goal. I’m really about that first step. I’m not climbing 48 because I want to notch 48, put that feather in my cap and move on. In fact, I’m going to climb a bunch of them multiple times because I’m going to climb for the organization but also climb some of them on my own. It’s really all about the experience of climbing. I really do believe that it’s more about the journey than the destination. But those are 48 significant aspects. The most significant of them has the worst weather in the world and it’s pretty renowned. We picked July 3-4 to summit Mt. Washington because the weather is easier then. But this is just the start of it. JP: If this is just the first step, that tells me you have goals to go beyond the 48. RP: I do. I’m always considering what the possibilities are, and that’s the beauty of multiple mountains. One mountain is a quick goal. We need a lot of goals in our world, and we strive toward each of them in time. JP: How is your dog involved in pursuing these goals? RP: My guide dog, Quinn, comes from Guiding Eyes for the Blind, which is in Yorktown Heights, NY. That’s fairly close to where the Appalachian Trail hits New England. I sort of have a notion that at some point I 56

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I picked the year 2020 as a goal point because it encompasses the notion of having clear vision. Also, it’s sort of the year by which I imagine I can reasonably complete the 48. But maybe I’ll finish them a little quicker, just to give this pup a chance to be involved in this goal. JP: It’s clear that your goals are not centered around yourself, but instead involve others like the organization, your guide dog, people around you. Is there a conscious effort to include others in your goal-setting? RP: There’s a little bit of conscious effort in there, sure. I’m very proud of my accomplishments, but I don’t take easily to the notion of my own inspiration being within myself. I really believe people find their inspiration. You can’t choose to be someone’s inspiration. I am proud of what I’m doing and I think there’s some quality in the message that I want to share with folks, but I get an enormous amount of inspiration from a lot of sources. One of the things I want to do is provide an opportunity for some of those venues who have helped me to get a platform for some visibility. I have a reasonably good presence in general and that will help me share some of this success. There’s a video online called Tyler. It’s a five-minute clip featuring a guy named Tyler who has cerebral palsy. He’s the first person from whom I’ve ever heard the term “ability awareness,” which is also a term that relates to this magazine. In the video, Tyler says, “I don’t want to talk about disability awareness, although that has value. I want to talk about ability awareness.” I completely buy into that. Tyler is an inspiration. So I hope through this project, through these hikes, we’re going to give a lot of voices to a lot of inspirations before we’re done. 2020visionquest.com

n 2001, construction worker Thaddeus Harris was thrown from a moving truck and sustained injuries that left him unable to walk. “For about nine years, I had just been existing,” Harris said of his life after the accident. Last year, however, Harris found a glimmer of hope and increased independence via an organization called Fuller Center for Housing, which was searching for a resident to occupy a new, fully-accessible duplex. Harris applied for the duplex and now is the proud new co-owner of a home in Americus, GA. Chuck Davis, who now shares ownership of the duplex with Harris, admits he was shocked when he learned of being selected as a Fuller Center homeowner. “I couldn’t believe it,” Davis said. “I’d never thought about having a house of my own.” A resident of Dayton, OH, and a wheelchair user with cerebral palsy, Davis says the opportunity to move to Americus puts him within walking distance of his brother and sister-in-law and their young children, and looks forward to frequent visits from his nieces and nephews. Construction of Harris and Davis’ new home was the joint effort of Americus-Sumter Fuller Center for Housing and the First Presbyterian Church in Americus. Members of the church have been known to take part in the Faith Builders Program, a group that guides churches in fundraising for their own Fuller Center projects. The Harris-Davis duplex is the first new home project undertaken by this unique partnership. The genesis of this home construction effort was modeled after the ABILITY House, the hallmark endeavor of ABILITY Awareness, in which volunteers with disabilities engage in the construction of a home built for a low-income family with a disability. Millard Fuller, founder of the Fuller Center for Housing, embraced the new vision of volunteer outreach and greater accessible design in 1999, when the program constructed the first ABILITY House in Birmingham, AL. Participating first-hand in the construction of their new home, Harris and Davis collectively invested over 500 hours of “sweat equity” toward its completion. Throughout the day, Davis participated in hammering, moving lumber and using a power saw. “I’m learning things,” Davis admitted as he labored alongside other volunteers. “I’ve never built anything in my life!” Meanwhile Harris, happy to put his construction experience to use, lent a hand with hammering, holding 2x4 beams steady, and helping to dig the home’s foundation. “I’m feeling so many different emotions,” Harris said as he worked during the build. “I can’t explain it. Before, I was living for me, but these volunteers are making me want to be more like them.”

In an effort to further include Harris and Davis in the completion of their home, Tom McFarland, a Fuller Center for Housing board member, built a stand at wheelchair level so that both men could have a hand in raising the walls of the new construction. On February 3rd, the one-year anniversary of Fuller Center founder Millard Fuller’s death, siding was put on the home and the local Americus-Fuller Center office staff took the day off work to volunteer at the build site alongside Davis and Harris. In addition to being fully accessible to people with disabilities, the new Harris-Davis duplex is also fully “green”. Koinonia Farm—a local, Christian community farm that was instrumental in the work of Millard Fuller—involved all of the project’s volunteers in a Georgia Permaculture Certification course, working closely with the property to minimize maintenance and promote natural restoration. Multiple permaculture landscaping strategies were employed in creation of the home, such as raised garden beds—easy for Harris and Davis to access in their wheelchairs—and an accessible tool shed constructed by Americus Sumter High School students. For Fuller Center board chair Kirk Lyman-Barner, the collective spirit of the project’s volunteers was particularly fulfilling in that the construction overlapped the Martin Luther King, Jr. National Day of Service. “I am so delighted that so many people came out to help build Chuck and Thaddeus’s house today,” Lyman-Barner said at the build site. “This day of volunteerism symbolizes the attainability of community renewal.” LymanBarner went on to emphasize that the Fuller Center’s work is far from done—the organization plans to partner with a variety of churches for sponsorship of volunteer projects for many years to come. As for Davis and Harris, the two men who were once complete strangers have since become fast friends and housemates, and have bonded over the shared experience of constructing a new place to call home. “We are two different people, but we are the same,” Harris said. “We have the same need. We can watch out for each other.” by Marci Casey abilityawareness.org fullercenter.org ABILITY 57

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10 13

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1 Scary Movie and Ally McBeal star who volunteers with senior citizens and advocates for public awareness of scleroderma (2 words) 7 National chair of the Performers with Disabilities TriUnion Committee. Robert ____ 10 Man who shocked the world when he showed telekinetic powers. ___ Geller 12 Inspirational song: “We Shall _____” 13 Had fun 15 Internet laughter message 16 Position of 2006 Heisman Trophy winner 17 Louis Braille mark 19 Employment resource for people with disabilities (2 words) 21 Surf sound 23 Philosophical verb 24 Mini, for one 26 Codliver, e.g. 27 Let out 29 Inspirational magazine published by ____ Olson after she had had a serious heart attack and recovered from it 30 Def Leppard drummer who helps kids at Camp Kirkpatrick. Rick ____ 32 Strong and healthy 34 Least amount (abbr.) 35 Leonardo __ Vinci 36 Engages people to take part 38 Gold medal winner in Women’s sit-ski at the 2010 Paralympic Winter Games. Stephani _____ 41 Major contributor to childhood obesity (2 words) 42 Celebrity chef who cooks despite rheumatoid arthritis 45 Virtual opinion 46 Ocean’s Eleven star who helps autistic children learn to surf. Scott ____ 47 Dog command

1 Term of mockery which has recently prompted an Awareness Day (hyphenated word) 2 “Bad area of town” usually stereotyped and avoided 3 Bee food 4 Singing to yourself, in a way 5 Lionel Richie’s “You ___” 6 The One star Jet 8 Celebrity on The Learning Channel’s Little People, Big World who runs a foundation for kids, at-risk youth and disability groups (2 words) 9 Chaired 11 Friend 13 Money to play for 14 Diminish 15 President famous for his stand on civil rights 18 It needs refinement 20 Lonely 22 Heroine of Tennessee Williams’s Summer and Smoke 23 Bad kids at school 25 Famous painter who continued to create beautiful art despite severe arthritis 27 For example, abbr. 28 Verb that was the basis for making America great 30 Gold medal-winning nation in sled hockey at the 2010 Paralympic Winter Games 31 Fleur de __ 33 Bachelor’s last words! 37 Website feature sometimes 39 Talk on Twitter 40 One hole in a golf contest 43 “__ I ruled the world” song 44 Grey’s Anatomy star Sandra __

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