Daryl "Chill" Mitchell Issue

MAGAZINE

VOLUME 2010

DARYL “CHILL” MITCHELL

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M ANAGING E DITOR Gillian Friedman, MD

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

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

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HUMOR — Laziness is the Key to

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ASHLEY’S COLUMN — ESPY Time!

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TIMOTHY & ANTHONY SHRIVER — Eunice’s Legacy

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ABILITY FACEBOOK CONTEST — “This is How We Roll”

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AUGIE NIETO — Excerpt from Reciprocity, Incorporated

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DR. ERICA SCOTT — The Fine Art of Addiction Therapy

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ALICIA ROJAS — Portrait of an Artist as a Young Woman

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DARYL “CHILL” MITCHELL — Cool, Calm and Collected

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SPINAL CORD INJURY — Stem Cell Research Gaining Ground

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MEDICARE — Competitive Bidding and Cost Reduction

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ANTHEM BLUE CROSS — The Patient Safety First Project

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IT’S OUR STORY — A New Chapter in Disability Representation

Paralympic Games Beijing

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Extremity Games

Addiction Therapy p. 26

Music Within

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

H EALTH E DITORS

Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING W RITERS

Daryl “Chill” Mitchell p. 40

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 Humor p. 6

G RAPHIC A RT / I LLUSTRATION Scott Johnson Guy Uesugi

CROSSWORD PUZZLE

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ABILITY’s Crossword Puzzle

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EDITORIAL

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PUBLISHER

Chet Cooper

The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2010 ABILITY Magazine

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

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mericans are lazy. And you know what? I’d like to argue that laziness is a good thing. Laziness gets us going. It breeds innovation. After all, what do people want? They want something that can make their lives simpler. People will always buy that widget or gizmo that makes their day easier. So the forward-thinking lazy man will set his laziness aside for a few months to come up with something that promises to help people become lazier. Why? Because life is all about greed and money. And not only are greed and money good, so is good, old-fashioned laziness. Laziness is the driving force that has built this country and has made it the most prosperous in the world.

There was a time when people used to have to walk places. (I know, crazy, isn’t it?) At that time, there was no other choice. Eventually, however, folks got tired of walking, got lazy and jumped on the back of a horse.

Unfortunately, they came to find out that this horse was a bear to take care of. It needed a barn to stay in, which meant someone had to build it one. Someone had to feed the horse, brush it, and generally look after it. The whole undertaking was a pain. So some lazy slob, who was no doubt tired of walking or smelling horse manure, invented the engine. A car was born.

Basic communication began with smoke signals but I have to imagine it would be pretty tiresome building a fire every time you wanted to invite someone over for dinner. Thankfully, someone invented papyrus so that people could make up formal invites. Then, because it would take monks several weeks to make copies of those invites, along came Gutenberg with a press that could crank out ten invites in a day. This allowed monks everywhere the ability to return to not talking to each other and humming.

Delivering the invites probably took months, thanks to

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the Pony Express, which meant that dinner was usually spoiled by the time folks received their dinner invitations. But then, along came Alexander Bell (who no doubt found opening an envelope burdensome and time consuming) to invent the telephone. This device allowed people to personally invite someone over for dinner. Sure, it’s always a pain getting up off the couch to answer the phone, but a much bigger problem is coming up with a spur-of-the-moment lie to justify declining the invitation. (No one wants to admit to being too lazy to attend.)

And so we have the answering machine. This device allowed the excuse of being out of town to become fashionable. Enter cell phones, allowing people to be reached at all times, a development that has made ducking invitations even more difficult than ever.

And what about our kids? Without question, children are an integral part of the American nuclear family. But their primary function is to engender laziness—to help the parents out on the tedious household chores. As soon as a child is able to walk, it’s legal to make the little runt a household slave. Why should you have to take out the trash when there’s a kid around? The bright idea to assign chores to children was the secret reason behind the population boom. I suspect people were just plain tired of having to do the dishes and wash their clothes, and they figured kids were easy to boss around and fun to spank. Let kids handle the stuff that adults hate to do. Brilliant!

(Note: This plan has ultimately backfired because many children have now become lazier than their parents.)

Yes, my friend, laziness breeds innovation. Throughout history, almost everything ever invented was born from slothfulness: the steam engine, the choo-choo train, the

riding lawnmower, the computer. Each of these things was concocted for one reason: to give us more time to rest. (Sleep is a beautiful thing.)

Many baby boomers remember the grueling days of having to sit through numerous commercials on TV. Ugh. (These were the olden days in which there were only three networks—and you had to play with rabbit ears to get them.) Luckily, some MIT genius, who was probably tired of having to put down his Twinkies and get up to switch over to Star Trek, came up with the greatest invention in the world: the remote control. This device revolutionized television watching and the slug was born. No more having to get up off the couch (groan) and change channels. No more sending your kid to do it for you. Now it was possible to just sit in one place and push a button to allow the world (or Jersey Shore) to unfold in front of you.

But commercials serve their own role in the promotion of laziness. Not a night goes by that several “as seen on TV” ads don’t pop up on the screen, each hawking The Garden Weasel, Wonder Hangers, The Neckline Slimmer, Smart Mop, or that crazy little Ped Egg. In such advertisements, hyper, coked-up pitchman swear they have items will make our lives easier. (The only catch?

Most of these miracle items last about a week.) No need to run to the farmers market when you can have giant blueberries in your own backyard! Toss Mr. Steamy in the dryer and never do any painstaking ironing!

And how about the breakthrough technology of The Flowbee? Instead of having to waste energy by squeezing a pair of scissors together, now you can simply cut and vacuum your hair! No more dandruff. Spill something?

All those time-consuming trips to grab paper towels are things of the past when you buy a ShamWow! But for my money, the one item that epitomizes just how lazy Americans have become is The Clapper, a device that has finally made our one form of exercise— getting up and turning off a light—obsolete. I’m telling you, you’ve got to think lazy to be rich!

Thank God for lazy people. Nobody is better at being lazy than an American, and it’s no coincidence that America is the richest country in the world. How did we make it to the top? By wanting to lie around at the bottom. So if you want to be wealthy, take an hour or two out of your daily television watching and invent something that will help people become lazier.

As for me, I’m off to make my dinner. I don’t know if I have the strength to cut up any vegetables tonight.

Where the hell is my Slap-Chop Food Chopper? Oh, and could someone please invent something that writes articles?

“Ham on a Roll”

by Jeff Charlebois

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y life as an athlete doesn’t just mean that I get to race around a track. There are other perks to the job, too. Sometimes I get a chance to dress up and go out in style!

This year I was nominated both for an ESPY and for a Teen Choice Award! My ESPY Award nomination was in the Female Action Sports category, and I had been nominated there last year, as well. It was really awesome to be invited back and to be nominated again— motocross is not a very mainstream sport, so it is always nice when an athlete from that sport is picked and has a chance to win! A male racer, Ryan Dungey, was also nominated this year. Neither of us won, but our nominations mean that motocross is starting to be recognized, so they were good news for everyone in the sport.

Being nominated for awards gives us an excuse to dress up and get out there and meet tons of other athletes!

This year my Red Bull team decided to make a funny YouTube video of me for the ESPYs. They came to the track I was practicing on and filmed me driving. In the video, my dad is holding my pit board (a hard writing tablet that gives you information when you are riding) that reads “ESPY Time!”

the busy schedule I have, it’s hard to find time to promote the book, but I always feel good when I’m at the races and there is someone standing in line with it and waiting for my autograph! Many non-racers who have bought the book have told me how much it has inspired them and that they really loved the story. That always feels great! My family and the writer, Caroline Ryder, worked very hard on this book for over a year so it is definitely nice to see our hard work recognized!

I’ve got plenty of other stuff going on, too, including participating in an athlete advisory panel and doing a film segment for Honda on the subject of dreams and innovations. Like I told you, my job involves a lot more than driving a car! It’s all great fun, though, and I know I am lucky. Every day I thank God for all the talents and opportunities that I have!

Editor’s Note: Just before this issue’s publication, Ashley took home the gold medal in the 16th X Games Super X Women’s Final at the LA Coliseum. She won the same medal in 2009. Congratulations, Ashley!

The day after filming that segment of our video, I checked into the W Hotel (a fancy boutique hotel in Los Angeles) where Red Bull filmed me dressed in my gear and wearing my backpack. In the video, my dress was hanging out of the backpack, and I rode up to the lobby steps on my bike and then walked into the hotel! Man, I was embarrassed. Luckily the shoot didn’t take very long.

Next, the video showed me and my date getting ready for the ESPYs and walking out of the hotel, all cleaned up and ready to go. Once the video was finally put together and launched on YouTube it looked pretty cool!

On top of all of this, I am still busy promoting my recently-released autobiography, Kicking Up Dirt. With 8

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ashleyfiolek.com

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Let me win, But if I cannot win Let me be brave In the attempt.

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t’s a simple motto. A phrase that, more than 50 years ago, Eunice Kennedy Shriver uttered to kick off the inaugural Special Olympics in Chicago. Today that motto lives on, and so does Shriver’s legacy.

Shriver’s tireless efforts to provide equal footing and opportunity for people with intellectual disabilities grew with her founding of the Special Olympics—and the influence she left on her family has kept that torch burning past her death. Today Eunice’s sons, Anthony Shriver and Timothy Shriver have created an event that epitomizes their mother’s life’s work: The Eunice Kennedy Shriver Challenge, scheduled for Oct. 23, 2010 in Washington, D.C. “It seems only natural after my mother passed away last August that Anthony and I pull together a unifying event to honor her legacy in our nation’s capital,” said Timothy, who is chairman and CEO of the Special Olympics. “Our goal in this inaugural year is to galvanize the beltway around this important cause and help foster greater acceptance and inclusion for people with intellectual and developmental disabilities.”

“Washington has been our home,” added Anthony, the founder and chairman of Best Buddies International.

“We all grew up in Washington and have a special bond with the community, so it made sense to do a major marquee event there. It made sense, in light of my mother’s passing, to do an event in her honor.”

The Eunice Kennedy Shriver (EKS) Challenge is a joint venture by Best Buddies International and Special Olympics and is, in some sense, an evolution of the longstanding Best Buddies Ball, which has raised millions of dollars in support of people with intellectual and developmental disabilities.

Some of the biggest names and faces in Washington are showing their support for the EKS Challenge, which includes events for people of all ages and abilities.

Thousands of participants are expected to be in attendance, including as many as 700 Special Olympians and members of the Best Buddies program.

Included in the EKS Challenge events are a twenty-mile cycling event, the Carl Lewis 5K run and 3K walk (led by ten-time Olympic medalist Lewis), a corporate relay, a youth fun run for the engagement and motivation of young people, and a private luncheon for all participants.

“We wanted to carry on the spirit that my mom had,” Anthony said. “She was really focused on family and on

getting family members involved and engaged.”

Timothy notes that the program’s primary strength is its ability to welcome and inspire everyone who participates. “It doesn’t matter how athletic you are, how old or young you are, or whether you have ever been involved with Special Olympics or Best Buddies International in the past,” he said. “The EKS Challenge is for everyone. “This is a cause that affects everyone, in the sense that it is about community, acceptance and inclusion—ideals that every American holds dear to his or her heart.”

The EKS Challenge’s running events, led by Mayor Adrian Fenty, will begin at the Washington Monument and circulate around historical markers throughout the capital city. The EKS Challenge is co-chaired by Washington Capitals and Washington Wizards owner Ted Leonsis and six-time Special Olympics medalist Ken Holden. The two are longtime friends, thanks to the Best Buddies program, and communicate daily via e-mail.

Anthony believes camaraderie building to be at the core of the EKS Challenge, and says it is the primary reason why Best Buddies and the Special Olympics combined on this venture. “We’re really into the whole friendship model, which is, I think, a gigantic message that needs to get out there,” he said. “Without a network of friends, it’s really tough to have any success in your life.”

Eunice Kennedy Shriver was the sister of politicians John F. Kennedy, Robert F. Kennedy and Edward M. Kennedy. An avid sports fan, Eunice creatively linked sport with disability and rehabilitation and was a major advocate for disability rights. The Kennedy family often spoke publically about their sister Rosemary, who had an intellectual disability.

Services for people with disabilities were minimal during Rosemary’s childhood. Spurred by this shortage, Eunice and her family opened their estate to children who were institutionalized with intellectual disabilities.

Eunice frequently hosted activities and competitions in horseback riding, swimming and kickball. These efforts provided new opportunities for children with disabilities while also illustrating the Kennedy family’s interest in treating people equally.

“At some level, even at the age of five, I began to associate fun, play and excitement with understanding,” Timothy said. “It was a great gift from my parents, and it showed me that people are wonderfully different and ABILITY 11

Timothy Shriver, Chairman and CEO of the Special Olympics, visits with new friends in Africa.

yet the same. My mother’s passion for sports, love for her sister and anger at the lack of services for her sister fueled her desire to find solutions and opportunities for all people with intellectual disabilities. She saw sports as a vehicle for unity and wanted to give people with intellectual disabilities a basic right: the right to play.”

happens after the closing ceremonies? What happens when the veteran’s rehabilitation is complete and he or she goes back into a community in which adaptive sports may not be readily accessible? Anthony says these sorts of questions are of great concern to the Shriver family.

For many people with disabilities, the right to play has often been treated as a learned process—one which takes considerable loads of effort because often such opportunities were nonexistent.

“What happens throughout the year? What happens to a person when he’s looking for a job? What happens to a person when he’s looking for a network of friends and for better integration in community life?” Anthony asked.

“With the combination of Best Buddies and the Special Olympics, we’re really hammering away at the key components of someone’s life: integration, inclusion, friendship, socialization, sports, wellness, mental and physical health. You put all those things in one package, and you really start knocking the ball out of the park. You really start to manage and work toward the bettering of the overall experience that a person with special needs has throughout his life.”

“I think people with disabilities have historically been left out of the process,” Anthony Shriver said. “Health has been an ongoing challenge for them, and it’s a critical component to having a well-rounded life. Sport is a big piece of that overall puzzle.”

Many of the long-standing roadblocks to sport and recreation for people with disabilities have since been surmounted, and much of that progress can be credited to Eunice Kennedy Shriver and the Special Olympics.

An increase in the popularity and simple knowledge of the Paralympics—an international, multi-sport event in which people with disabilities compete—as well as an increase in awareness of disability are due in some part to the large number of injured military veterans coming home from Iraq and Afghanistan. Participation of those veterans in various sports has transformed adaptive physical activity into something of a social buzz.

But what happens when the games are over? What 12

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Boosting the overall experiences of people with disabilities is a major interest of the EKS Challenge. The Challenge aims to use a prominent national stage to raise awareness of people with intellectual disabilities. Meanwhile, Best Buddies is focused on the employment of people with disabilities, while the Special Olympics continues its sports-based mission to instill the values of teamwork and relationship-building. In the end, the Shrivers say they are merely continuing the work of their mother and attempting to eliminate as many of the stereotypes against people with disabilities as possible.

Anthony Shriver, founder of Best Buddies International (left) stands with Eric, a Special Olympics athlete, and California Governor Arnold Schwarzenegger (right).

“It’s great for someone to see that a person with a disability can ride 20 miles on a bike, can run as fast as someone else who has no disability, can hold a job, can give a great speech,” Anthony said. “This gives the public a chance to re-examine their assumptions and to focus in on our organizations, what we do, what we achieve—and what people with intellectual disabilities achieve every single day. That’s why these events are really important.”

Timothy agrees that a concerted effort to demolish the stereotypes that exist about people with disabilities is the fundamental reason for the EKS Challenge. “The mission of the Challenge is to build awareness and support for the needs of people with intellectual and developmental disabilities through cycling, running and walking,” Timothy said. “This effort is a reflection of the power of collaboration and of bringing people together around a common cause.”

The brothers agree that Eunice Kennedy Shriver never fell into the easy pitfalls of stereotyping. Instead, they say, she spent the better part of her life working to provide opportunities for people with intellectual disabilities and to create an opportunistic future for every American. She laid the groundwork for this effort through the founding of the Special Olympics and through organization of other fundraising events. Today her work lives on through the inaugural Eunice 14

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Kennedy Shriver Challenge. Her sons are committed to keeping that work in the public’s hearts and minds.

“She started something special,” Anthony said, “but it’s our responsibility to keep that thing going and to make sure she didn’t spend 45 years of her life doing something that didn’t have any legs. This is an effort to make sure the legs are strong, to make sure the foundation is strong, and to make sure we continue to reinvent ourselves, provide services, create awareness, and give opportunities for people with intellectual disabilities to showcase their skills.”

by Josh Pate The Special Olympics were founded in 1968 by Eunice Kennedy Shriver with the goal of having a million athletes participate in the games. Today, more than 3.4 million athletes compete from all regions of the world.

Best Buddies was founded in 1989 by Anthony Shriver as a volunteer movement to create one-to-one friendships to develop leadership and employment opportunities for people with disabilities. The organization impacts more than 700,000 people with intellectual disabilities.

Eunice Kennedy Shriver Challenge Best Buddies International bestbuddies.org Special Olympics specialolympics.org Eunice Kennedy Shriver eunicekennedyshriver.org

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Congratulations to Angela Irick, winner of ABILITY Magazine’s “Publish Your Short Story” Facebook contest. Irick’s autobiographical short story was selected by Facebook voters at the ABILITY Magazine fan page.

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grew up with a group of girlfriends, many of whom have known each other since pre-kindergarten. Some of us met in the sixth grade and have continued to be friends ever since. We have been through a lot together—from my accident that caused my paralysis in 1996 to unfortunate deaths in our families. These are not just my friends, they are my extended family. Although we have been through our hardships, our fun times have kept us glued together, Megan’s wedding, in 2010, was one of those moments that bonded us all for life.

Megan’s wedding celebration featured a photo booth in which guests could take pictures as keepsakes from the wedding. All night, people asked me if I wanted to try to get in the photo booth. I always politely declined, instead watching as my friends took goofy pictures.

Though I tried not to think about it, the laughter of everyone taking pictures in the booth kept grabbing my attention. Finally, while out on the dance floor with some of my friends, I decided to give the photo booth a whirl. My friends were so excited by the idea, they wheeled me over to the photo booth before I could change my mind. My front wheels went perfectly into the booth. Unfortunately, my back wheels got stuck and I couldn’t get in!

concerned groomsman asked us if we needed help. A fireman, he offered to pick me up and put me into the photo booth with the girls. I am a high quadriplegic and don’t like getting out of my chair, but the looks of “PLEASE PLEASE PLEASE” on my friends’ pressured me to accept the groomsman’s offer.

In a flash, a group of groomsmen came over and lifted me out of my chair and put me into the photo booth. All eyes were on us as the bride came running over to be in the picture. I sat in the photo booth with the bride and three bridesmaids, each of whom needed to hold me up due to my lack of trunk control. Everything was great!

And then, it happened. The bride had let go of me and I felt myself slowly start to tiiiiimber. When I was finally caught, Megan nonchalantly said, “Oops! Sorry, I forgot you can’t hold yourself up.” We all began cracking up and continued with our pictures.

After we’d received our photos, Crystal, one of the bridesmaids, wrote “This Is How We Roll” on the bottom of our photo strip. It was perfect.

by Angela Irick—heelswithwheels.com In loving memory, Bill Sinder

I was determined to get some type of picture of me in this photo booth. So I told one of my friends, a bridesmaid named Julie, to “pick up my foot and hold it up.

Then we’ll have a picture of my tattooed foot with all of you holding it.” As the girls began taking off my foot rests to get the picture of my foot, a curious and ABILITY 17

ALWAYS BE CLOSING?

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started my first business as a sophomore in college, goaded into it by my economics professor. When he gave me a low C on a paper I’d written—a business plan for a health club—I told him I’d open my business and earn more than he did in a year’s time. I leased retail space near our Claremont, California, campus. I courted investors, bought equipment, and ran the club while attending school. The gym was an immediate hit, and twelve months later my profit-and-loss statement served as sweet vindication for my C-minus. Better still, an entrepreneur was born.

The fitness industry at the time (this was in the late ‘70s) was dominated by weight machines and by weightlifters, most of whom were men. Since my club was relatively small, I only had space for one locker room, so the male and female members were admitted on alternate days. Consequently, I couldn’t help but notice how few women the gym attracted. Building conspicuous muscle wasn’t much of a draw for them, and there was little aerobic exercise to speak of at the time.

Since it seemed foolish to ignore half the potential market, I started casting around for something that might appeal to women. I soon found what I was after in a San Diego gym. It was something called the Life Cycle, a stationary bike with an electronic display that allowed the rider to follow his progress across hilly terrain as he pedaled his way through a twelve-minute exercise program. Or rather, as she pedaled her way through it—all of the Life Cycles in the place were occupied by female members.

With the same impetuousness that had gotten me into the health club business, I struck a deal to become the worldwide distributor of the Life Cycle. I’d soon bought a motor home (affectionately called ‘Slugo’) and had set out across country to show the bike off to any gym rat who cared to see it. I drove from coast to coast, setting up in health club and fitness center parking lots and pitching my vision of the industry’s co-ed future. I had a Life Cycle bolted to the floor of my mobile home, and I lured club owners and managers out to ride it every chance I got.

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I was so confident I’d stumbled upon the future of fitness that I had several hundred Life Cycles ready for shipment in a California warehouse. My enthusiasm, however, proved doggedly uncontagious. Over the course of nine months, I sold a pathetic eleven bikes. By the time I’d returned to the west coast, I found myself nearly a half million dollars in debt. Desperation took hold. I sifted through my meager options and settled on the one that made the most sense to me at the time. I needed people to love the bike like I did, so I started giving Life Cycles away.

From the scores of contacts I’d made on my crosscountry trip, I selected fifty health club owners and sent each of them a bike, not to their gyms but to their homes. I wanted these gifts to be seen for what they were—personal gestures made freely with no obligation attached. I hardly knew what, if anything, to expect in return, and I certainly had no idea I was tapping into a potent human force that has informed and shaped social interaction for centuries.

Even if inadvertently, I was unleashing the irresistible power of reciprocation. The fifty club owners, once they’d accepted something for nothing, could hardly hope to let the debt go unanswered. We were now joined in what anthropologists call a “web of obligation.” My gift had to be repaid somehow. The hard wiring of the human psyche demanded it.

I’ve since grown to appreciate the profound gravitational pull of reciprocity, but at the time, I was merely hoping to stave off ruin and help generate enthusiasm for a product in which I believed. The expense of putting fifty free Life Cycles in the hands of people who might buy and deploy them seemed modest relative to my investment in the four hundred bikes sitting unwanted in my warehouse. I was doing what I had to do as a businessman, and I remained blind to the social science of the undertaking until well after the orders started coming in.

Today I calculate that each of the fifty Life Cycles I gave away directly resulted in ten bikes sold. And those bikes, in turn, sold more bikes which sold more bikes which sold more bikes. The company I started with a lone product I

believed in would eventually morph into Life Fitness, the largest manufacturer of exercise equipment in the world.

The lesson of those fifty bikes helped shape my fundamental philosophy as a businessman. That first generation Life Cycle was far from perfect, and even though we were repairing and replacing units at a staggering clip, I insisted on an unconditional guarantee. The expense and aggravation were initially high, but our company was working all along to improve the design and mend the frailties, and I wanted to maintain the connections I’d cultivated and sustain the goodwill of my customers. Reciprocity again. I was just as ensnared in that web of obligation as they were.

This sort of open-handed, good-service ethic served me well in my career. As Life Fitness grew into a behemoth of the industry, my philosophy as CEO never wavered.

A handshake was as good as a contract. Every piece of equipment we sold was guaranteed without condition.

And if a customer wasn’t happy, I wasn’t happy. If those seem stunningly simple as business principles go, it’s only because they are.

Flash forward to March of 2005. I’d been losing strength in my arms over the course of the previous eight months, and I’d begun to experience uncommon muscle twitches that had finally prompted a visit to the Mayo Clinic in Arizona for a full examination. After three days of tests, a clinic neurologist delivered the devastating diagnosis: Amyotrophic Lateral Sclerosis (ALS). I had Lou Gehrig’s disease. To make matters worse, the diagnosis was followed by the news that there is no effective treatment for ALS and that the root cause of the affliction remains a medical mystery. Instead of discussing therapeutic options, the neurologist advised me to get my affairs in order.

I went into a tailspin of despair and depression that lasted well into the summer. Once I’d regained my balance, I tried to find out all I could about my disease and was hardly encouraged by the modest breadth and vigor of ALS research. ALS is known as an “orphan disease”.

Only five to seven thousand domestic cases are diagnosed annually, and there may be 30,000 people in the country at any given time with some stage of the condition.

The low incidence of the disease, in combination with its neurological complexity, has resulted in scattered pockets of plodding academic research but no robust and concerted push to identify the cause or causes of ALS and to develop a drug therapy to treat them. It soon became clear to me that finding a cure for this disease was only an emergency for the people unfortunate enough to have it.

I finally located an ALS research facility tuned to a suitable pitch of desperation. It is known today as The ALS Therapy Development Institute and was founded by the brother of an ALS patient. I have since become deeply

involved in the workings of the institute and serve as chairman of the board of directors. Our goal is to treat ALS much as a big pharmaceutical company would treat a far more prevalent affliction. We’re mounting a wholesale assault on ALS, approaching the disease with no prior assumptions as to potential cause or possible drug therapies. Consequently, we stand prepared to try anything and everything to vanquish this disease, a task which promises to be enormously expensive.

A significant part of my role with the institute involves raising money to help support the research effort. So I have, essentially, gone back into business: the business of fundraising. My colleagues in the fitness industry have responded heroically. If we succeed in finding a cure for ALS, the owners and operators of our nation’s health clubs—and the companies that manufacture and supply their equipment—will have played an outsized part in the effort. Many of these contributors know me or at least know of me and my place in their industry, so I approached them with a ready advantage.

But I’ve also enjoyed eager and considerable support from complete strangers in business. Their collective response has been both surprising and enlightening.

When I was running Life Fitness, I thought of myself as a good corporate citizen. I gave to causes when I was asked, which is to say I wrote checks to charities. I wasn’t in the habit of volunteering my time, and I didn’t truly keep up with where my money went, what it did, and who it did it for. I made the donations. I wrote them off. It was all just part of doing business.

Recently, though, I’ve stumbled across a new (to me, anyway) business paradigm. Its hallmark is institutionalized compassion, a kind of corporate social conscience, a full embrace of the web of obligations that connects us all. It’s a philosophical commitment to reciprocity. When I approach companies for contributions to Augie’s Quest, which funds the Therapy Development Institute, and when I explain the challenges of ALS for both researchers and for patients, I often come away not just with money but with conscripts—people eager to invest their time and their energy to make my disease a thing of the past. One CEO met my show of pleasant surprise with a remark I’ll long remember: “A company can have a soul too.”

My ALS fundraising has had the added effect of prompting me to think about business and how it is conducted these days. It hasn’t escaped my notice that the ‘soulful’ companies I’ve come across are also highly profitable ventures. They’re well-run and creatively run. They prize their customers and vendors, just as I did, and treat them accordingly. Their employees are happy, productive, and well cared for. They invest in their communities. They’re environmentally-minded. Profit at any cost is not their god. And their executive officers make a point of giving compensation a good name. I’ve seen this new trend in business described as “sustainable ABILITY 19

you. These are all enormously accomplished people, and their achievements are well-chronicled and easily accessed. I was less interested in what they’d done than what they would advise others to do.

Is there a best way for the budding entrepreneur to grapple with rejection and failure, to keep a healthy perspective on success? What skills, what temperament, what ethics are most welcome in the workplace? Where does creative, unorthodox thinking come from, and can it be learned? What are the most significant differences between business as it is taught and business as it is practiced? In what ways does a commitment to charity, to philanthropy, affect the fabric and tone of a company?

Lynne Nieto with husband Augie Nieto on the set of the Jerry Lewis Muscular Dystrophy Association telethon.

capitalism,” which is handy as far as it goes, but the term doesn’t fully capture what the CEO in me recognizes as a fresh and inventive marriage of conscientious creativity with profitability.

The more exposure I had to this new business model, the more interested I became in the day-to-day tone and operation of companies that embrace compassion and social responsibility as guiding principles. I grew hungry for details of the nuts and bolts of managing such enterprises and was keen to quiz the entrepreneurs and CEOs on their philosophical underpinnings. Perversely enough, I was in a pretty good position to satisfy my curiosity. Leaving my CEO bona fides and my willingness to travel anywhere to conduct an interview aside, who’s going to say no when a guy with ALS comes calling?

This book is my attempt to make the most of that access.

In the past year, I’ve had the pleasure of long, illuminating conversations with some of this nation’s most creative businessmen and women. The memories are indelible: an afternoon in the Seattle office of Howard Schultz a scant two months after his return to a troubled Starbucks, a far-ranging discussion in Detroit on the brand of home economics that prompted Mike Ilitch to found Little Caesar’s Pizza, a visit with storied homeless advocate Father Joe Carroll whose raw entrepreneurial zeal has made his San Diego ‘village’ a model of dignified human reclamation, a high-octane chat with jewelry designer Cookie Lee about the hundred-million dollar business she started in her spare bedroom, a session at my kitchen table with Safeway CEO Steve Burd, who laid out his visionary plan to bring affordable, comprehensive health coverage not just to his quarter million employees but to the nation at large.

In all, I conducted twenty-eight interviews. The subjects were generous with their time and free with their counsel and opinions. Many remarked they’d never sat for quite this sort of interview before, chiefly because our conversations weren’t so much about them as about 20

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Questions such as these opened rich avenues of discussion, along with countless unanticipated byways, and I soon found my sessions yielding colorful anecdotes and enough invaluable insights to fill a comprehensive business handbook. The challenge for me lay in making the most efficient use of what I was hearing. The veins were so productive that I was feeling a little swamped until, one evening, I happened across the film version of David Mamet’s Glengarry Glen Ross on TV. The story is built upon the frictions and hardships of a real estate sales force in Chicago in the 1960s. Though we never see the property on offer, the free-floating anxiety and routine tirades among the salesmen suggest meager goods in a poor market. The relationships between the men run hot and profane. The atmosphere of the piece is Darwinian—eat or be eaten. If this company has a soul, it is coal black.

The film version differs from the Pulitzer Prize-winning stage play in one notable particular. Mamet added a scene—and a character—into the movie. The scene takes the form of a harangue visited upon the salesmen by an executive from the home office, from “Mitch and Murray uptown.” He’s played by Alec Baldwin in full sneer, and his motivational message is laced with scattershot humiliation. Baldwin’s character distills his sales philosophy in an acronym: ABC—Always Be Closing. “The only thing that matters in this life,” Baldwin tells the deflated salesmen, “is to get them to sign on the line that is dotted.”

I was struck by the antiquity of it all. The only thing that matters? Always be closing? Baldwin’s character made Wall Street’s Gordon “Greed is Good” Gekko seem relatively saintly. Compared to what I’d heard in my interviews, the thrust of Mitch and Murray’s enterprise was little short of medieval. It might have been a fictional business, but the drive and the impulses were real enough in their day. For that era, for those principles, Always Be Closing could well have been a fitting prescription.

Not any more. As a result of exhaustive conversations with the best and the brightest of the business world, coupled with my personal experience and evolving

instincts, I’ve developed my own prescription for getting ahead in business without falling behind in life.

Mine may not be as pithy as Mamet’s, but it’s sure to be more timely and more useful.

What follows are five lessons in sustainable success for the entrepreneur, for the uneasy executive, for the young business neophyte. Take as needed and apply liberally.

ALWAYS BE PERSISTENT “The hardest thing in business,” Mike Ilitch told me, “is getting started.” At the time, we were sitting in the tenth-floor conference room of the Little Caesar’s world headquarters in Detroit. The window over Ilitch’s shoulder offered a panoramic view of Comerica Park where his Tigers play. A scant half mile away, on the north bank of the Detroit River, stood Joe Louis Arena, which Ilitch’s Red Wings call home. Much of the construction and renovation in the area, conspicuous on my ride in from the airport, was either the result of Mike Ilitch’s civic inspiration or of his material investment. In his eighty-third year Mike continues to have a profound effect on the city he loves and has long called home.

The present, however, seemed of little interest to him as we talked. Little Caesar’s was enjoying yet another record year, and the company’s new veterans program, which discounts franchising fees for honorably discharged veterans and eliminates them entirely for their service-disabled brethren, was proving a considerable source of pride for the Little Caesar’s family of employees and cause for well-deserved public praise. Ilitch’s Red Wings had advanced deep into the playoffs and were, in fact, two weeks away from taking the Stanley Cup. His Tigers were only a season removed from having won the World Series in a sweep of the St. Louis Cardinals. All things considered, the present was pretty good, but Ilitch preferred to focus on the past.

Generally speaking, it may be human nature to view our past personal difficulties and thorny passages through the gauzy lens of nostalgia, but the businessmen and businesswomen with whom I spoke were far more inclined to honest, clinical assessments of where they’d come from and the troubles they’d known. Accordingly, Mike Ilitch’s memories of his stint collecting leads for awning salesmen and off-seasons spent hustling pizzas out of the kitchen of a Detroit night club seemed far more vivid and instructive to him than the triumphs he’d enjoyed more recently. Those he’d dismiss with a wave of his hand, but the doggedness, the sense of mission and drive that had gotten him to that conference room high above resurgent Detroit, that’s what mattered. That’s what stayed.

One conspicuously common feature of the stories I heard in this past year, a thread running through every interview I conducted was this: persistence is crucial.

Lasting success hinges upon it. The relentless pursuit of a dream is so obvious in some careers that it tends to go unremarked upon—Howard Schultz and his espresso

bars, John Ondrasik and his hit songs, Mike Ilitch and his pizzerias. Each qualifies as a long shot that persistence (and no small amount of talent) brought home.

But even those people to whom I spoke who had a leg up from the beginning needed drive and steel to reach the heights for which they were aiming.

Take Robert Day, for example. His grandfather, William M. Keck, founded the Superior Oil Company in 1921.

Initially a drilling contracting firm, Superior Oil expanded into exploration and partnered in the construction of the first offshore drilling platform in the Gulf of Mexico in 1938. Superior Oil was acquired by the Mobil Corporation in 1984 for nearly $6 billion. The philanthropic institution established by William Keck from his Superior Oil profits remains in family control. The Keck Foundation is now a one billion dollar enterprise that supports science, engineering, and medical research throughout Southern California. The foundation not only supplies grants but funds the occasional special project like the Keck Observatory on Mauna Kea in Hawaii and the Keck School of Medicine at the University of Southern California. Robert Day currently serves as chairman and president of the Keck Foundation.

Consequently, the chances are pretty good that Robert Day would have made his mortgage whether he succeeded as an investment banker or not. While the claims of basic survival are frequently factors in success, they certainly don’t have to be. The hunger to compete and win is just as powerful when unmoored from practical necessity.

The notion of success in business as triumph, as winning the game, was a potent recurrent theme in the conversations I had. Business isn’t just business. It’s personal too.

I was struck in my conversation with Peter Ueberroth by the emotional force and vividness of his memories of rejection as a young businessman. “I came out of college at a time when I must have had forty interviews with forty different companies,” Ueberroth recalled, “and I never got a job. I’ve always thought of going back one day and trying to buy those 40 companies.

One of them, in particular—a fiber board company up near Tahoe.” Here, Ueberroth paused and shook his head. “I really wanted that job.”

He was still irritated, his enormous successes notwithstanding. Here was the man who’d organized the Los Angeles Olympics, the former commissioner of Major League Baseball, current owner (in partnership with Clint Eastwood!) of Pebble Beach, and he was still visibly irked over the failure of a Lake Tahoe fiberboard company to hire him fresh out of college. That’s not sour grapes.

That’s persistence. That’s the unebbing competitive drive on display. And that ‘you’re-making-a-mistake-if-youdon’t-hire-me’ attitude isn’t merely what entrepreneurs and CEOs embody and exhibit routinely; it’s also what they look for in their colleagues and employees.

“Attitude,” George Argyros told me, “is everything in ABILITY 21

anything that needs to get done and do it now. The people who win are the ones who do more of the impossible than the other guys. That’s how campaigns work.”

George’s remarks were still fresh in my mind when I interviewed Howard Schultz, who said something strikingly similar while speaking of his early years at Starbucks. “I don’t think people generally realize how difficult it is to build a business,” Schultz told me. “When we were losing money as a start-up company, that’s when we were at our best. We just willed our success. We made the impossible possible. We proved everyone wrong. We couldn’t raise capital. Our stores were opening, and nobody cared. We had moments of great doubt but moments of great joy as well.”

Nieto speaks with Jerry Lewis (right), a champion in the fight to find a cure for Muscular Dystrophy. Nieto has raised millions for MDA’s ALS Division.

business.” I heard variations on that sentiment from virtually everyone with whom I spoke, including George Gorton who is not, strictly speaking, a businessman.

He’s a political consultant whose career spans from the Nixon administration (he was Jeb Magruder’s Watergate fall guy) through the election of Arnold Schwarzenegger. You’ll find a half dozen pages devoted to Gorton in Bob Woodward and Carl Bernstein’s All The President’s Men. His work hasn’t been entirely domestic, and when I asked him to name the best candidate for whom he’s ever consulted, I was surprised by the answer. “Boris Yeltsin,” he said. “He was drunk and corrupt, but he wasn’t evil like his opponent.”

In a sense, Gorton’s job is persuasion, which is hardly so concrete as, say, Howard Schultz’s job of roasting and selling coffee to the world. “My mother once asked me what I did for a living,” Gorton recalled. “I said, ‘I don’t know. I’m in politics.’” But even if Gorton’s success depends more on votes than on profits, his general working philosophy and his attitude toward colleagues mirrors what I heard from people in far less exotic lines of work.

“Loyalty was very big with me when I started out,” Gorton told me. “Now it has been replaced by what’s right and what’s wrong. I didn’t have anything to do with the Watergate break-in, but if they’d said let’s go bug Democratic headquarters tonight, I’d have asked, ‘What time?’” Today, as a seasoned consultant who’s seen both the good and bad of politics and campaigns, Gorton approaches his job and his colleagues a bit differently.

“I took it on the chin,” George allows, speaking of his Watergate days, “and now I have a sense that one has to be one’s own compass. We’re not cogs in a wheel but independent actors.” When asked who he hires these days to work with him and why, Gorton told me, “I look for highly motivated people. The job of the campaign is to do 22

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Of course, the ability to make the impossible possible is a byproduct of attitude, and attitude, as George Argyros has already assured us, is everything in business. So the ideal colleague, the perfect hire, is highly motivated and comes outfitted with an unerring moral and ethical compass. That is something slightly different from raw persistence. It’s not enough in business just to bring energy and focus to the job you’ve been charged to perform. To echo George Fisher, formerly of Kodak and Motorola, good business is all about doing the right thing the right way. Paul Jacobs at Qualcomm has already told us he pays more attention to the “passion and persistence” of his employees than to their resumes, so the question becomes how to bring context to your work, how to steer by a reliable moral compass.

The key, according to Pat Fuscoe of Fuscoe Engineering, is to live your persistence. “Persistence,” he told me, “is a form of consistency.” Fuscoe’s advice is simple, blunt even: don’t be mercenary. “Find something you’re emotionally aligned with,” he said. “Do what you do because you believe in it. That’ll lead to a more productive business.” As a practical matter, we can’t always be doing something we love. Sometimes a job is just a job, a placeholder, and we’re obliged to sell widgets. In those circumstances, it pays to remember Wing Lam’s commitment to be the best dishwasher, the best bus boy, the best delivery guy. To improve every job he took rather than simply perform it. In that case, Wing brought the context since the work couldn’t supply it.

Pat Fuscoe’s point about persistence and drive being a form of personal consistency is well taken. In the proper circumstances, with the right opportunities, what we’re after, fundamentally, is alignment. Are we pursuing the goals we think valuable and worthwhile or are we working at cross purposes to our philosophies and our beliefs?

Scott Olivett of Oakley had quite a lot to say on this topic. “Organizations need a consistency of values,” he told me. “Everybody has to be in agreement on what’s important. This isn’t necessarily about right and wrong.

With values, there aren’t always right answers. The mix

varies from place to place. But organizations have to have consistency.”

over the 2% mark indicates a problem. Either a company isn’t hiring right, or it isn’t treating its people right.”

With a career history that ranges, most recently, from The Gap to Nike and now to Oakley, Olivett has played key roles in the success of some of the best-organized and best-aligned organizations around. “A company is a system,” he said. “It’s the culmination of culture, people, infrastructure, product. You’ve got to understand each of those individually and all of them collectively.

You need to understand strengths and weaknesses, and where you’re misaligned. It’s all about where you are and what you need. So I use my own framework—you need vision, strategy, a set of operating targets, you need structure, you need people, you need the culture, and you need a set of values to live by.”

Thurston singles out Starbucks as the sort of company that treats its people right. “Starbucks depends on small working unit, like a tribe,” he said, “and its members are judged on what they do. They’re self-managed.” Of course, this sort of independence results occasionally in mismanagement and in mistakes, but the prevailing opinion among the people with whom I spoke—prevailing virtually to the point of unanimity—is that it’s better to get a working education from a mistake than to go through a career committed to not making waves, to doing only what is safe and predictable.

What Olivett is describing is, effectively, curiosity married to persistence. Informed improvements are what matter in business, both from the top down and from the bottom up. “One of the fundamental problems of business,” Olivett said, “is that people now want more out of their work environment than they’re getting. You see less turnover in those companies that create a good working environment and are doing something their people believe in.”

And turnover, according to Ray Thurston, whose SonicAir thrived on efficiency and who now consults on the topic, “is the single most important factor we measure. Anything

General Peter Pace was reminded of an anecdote he’d heard on the topic. “I remember hearing the story, I think from an IBM executive,” Pace said, “about one of his subordinates who’d made a $10 million dollar mistake. His colleagues wanted the subordinate fired, but the executive asked, ‘Why would I fire a guy I’ve just paid $10 million to educate?’”

Andrew Cherng of Panda Express offered an amplification on the topic. “A mistake is something you don’t do well but continue to do in the same way,” he told me. “If you learn from a mistake, how bad can it be? We all make mistakes in the people we select, the decisions that we make. They’re unavoidable.” Cherng went on to tell me that his business was “to educate people, to build ABILITY 23

Tour de France winner Lance Armstrong (left) and Nieto.

an environment where people can learn to see the possibilities of life. That’s why Panda is here. Otherwise we’d have one restaurant, and I’d still be running the front desk. Okay, maybe two.” Then he thought for a moment and added, “It would be a shame if I didn’t know the difference between what’s important and what’s not important.”

Miscalculations and mistakes are just part of business.

They are natural byproducts of drive and persistence. Successful entrepreneurs, managers, and employees acknowledge their mistakes and mine them for instruction. That’s the only way to avoid repeating them.

Alan Schwartz, the former president of the United States Tennis Association who now builds and operates indoor tennis facilities and sports clubs, waved his hand dismissively when speaking of missteps he’s made. “We all make mistakes,” Schwartz allowed. “I’ve had bad clubs. I’ve made plenty of mistakes. I move on. Sometimes there are bigger things in life than squeezing the last dollar out of a business.” He then went on to ask the crucial question. “As an entrepreneur, you’re a beachball in the ocean. Do you keep popping up when the surf washes over you?”

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California, but his environmental philosophy and his brand of personal and corporate consistency recently landed him a contract he hadn’t pursued and had no reason to expect. “If you say you care about the environment, but you’re not involved, that’s a problem,” he told me. “I was environmentally inclined, and that’s how I stumbled onto Miocean,” Fuscoe said of his efforts to clean up California beaches. “Once in a blue moon Fuscoe Engineering works outside of California. The guys who run the Montage resort—the Athens group—they like to do eco-adaptive projects. Martin Hoffman, who works for Montage, found out about this organization, Miocean, that was cleaning up California’s beaches.

He’s a surfer. He loves the ocean, and he was looking for an organization that did good work in a low-key way, and he found it in Miocean. Martin sent an email, and we invited him to our annual fundraiser. I didn’t ask him for anything at all.”

That last statement is key: “I didn’t ask him for anything at all.” The common thinking is that you’re always talking when you’re selling, but from my experience, and from the conversations I’ve had, I can assure you that listening can be a form of selling as well, and often it is the more potent and effective form. We all get talked at routinely. How often are we listened to?

A couple of years pass, and Fuscoe gets a phone call from Montage’s Martin Hoffman. “He called me up to tell about a resort they wanted to build in Costa Rica,” Fuscoe said, “and asked me if my company would be interested in developing it. This was a top tier assignment, and none of it would have happened without Miocean. Martin wouldn’t have noticed us. He would probably have networked around in the business community, sought proposals from big engineering firms and picked one.

There’s virtually no chance I would have gone after this job. There would be no pitch in the world I could have come up with that would have caused him to go with us.”

It helps, occasionally, if persistence, if driving forward, is your only option. When I started Life Fitness, I borrowed money from my family and friends. It totaled $450,000 (and that was in 1979!). I had convinced myself the world needed a $3,000 computerized exercise bike. Even if I was wrong. I had no choice but to figure out how to make it work. The persistence was all but built into the financing. I had no choice but to find a route to success.

In this case, Fuscoe’s alignment, his philosophy in practice, closed the deal. “By way of Miocean,” he told me, “Martin found out about my business accidentally and anecdotally.

Not only did he select us for the job, but he made a solesourced decision. There was no competition, no interviews, no nothing. He went to his partners and said, ‘This is the company I want to use.’ That just doesn’t happen.”

Better still, Martin Hoffman and Montage Resorts’ faith in Fuscoe Engineering has functioned for Pat Fuscoe both as a challenge and a source of inspiration. “I’m going to do the best job possible,” he assured me. “I’d never let them down. I just won’t. Now that’s reciprocity.”

Persistence with a purpose is the only sort of drive that matters. Blind doggedness might lead anywhere, but only informed tenacity can lead to consistency. And consistency in business, what Scott Olivett might call philosophical alignment, can be a powerful force.

Pat Fuscoe told me an illuminating story along those lines. Fuscoe’s engineering firm operates primarily in

Fundamentally, Fuscoe’s experience illustrates attitude in action. In life, as well as in business, it’s critical that we know what we believe and why, and that we find some way to express it. It always pays to be armed with the knowledge of what we will do and what we won’t do, which may require some thinking about issues we’ve yet to confront, situations we’ve so far avoided, temptations

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that may lie ahead. We have to decide who we are in this world and sustain uneroded confidence in that decision.

Alan Schwartz told me a story about his initial attempt to build an indoor tennis facility that touched precisely upon the value of persistence in business. “I was in the industrial real estate business,” Schwartz told me. “My dad got very ill in 1968. His doctors told him he only had a few more years to live, and we decided, as a joint effort, to build the world’s largest indoor tennis club.

“He found a location in the city of Chicago,” Schwartz remembered. “At that time, no indoor tennis facility had been built from scratch anywhere in the United States. A number of cities had converted buildings, but no one had actually built from the ground up.

Seventeen Chicago banks turned us down for a loan. These were all banks that had leant me money for industrial real estate projects, but they forgot my name when I came to talk about an indoor tennis club. There wasn’t even zoning for such a thing in Chicago at the time. Then I read an article in Time Magazine about a guy named Donald Parsons who’d been to high school and college with me.

It said in the article he’d just taken over the Bank of the Commonwealth of Detroit, where he was known as a maverick, and he was upsetting the bankers there.

“So I picked up the phone and called him. I told him what I needed, told him about all the other banks that had turned me down, and he invited me to come out to Detroit. He didn’t want to see any projections, any renderings, a presentation. Nothing. He said, ‘What do you need?’ I said I needed a loan to start of $900,000. He said, ‘You’ve got it.’”

Schwartz was flabbergasted. “I asked him why he’d do such a thing with no collateral, no nothing. He told me when I was playing varsity tennis at Yale he used to watch my matches, and he knew I’d kill myself before I’d lose. He knew I’d do the same thing before I’d go bad on his loan. I remember he said, ‘It won’t be long before the other bankers will want to take the business away from me.’ It worked out just that way.”

Today Schwartz invests in startup businesses and, consequently, is in much the same position of his former classmate in Detroit. “I look for commitment in young entrepreneurs,” he told me. “I’m making my own judgement if they’ll fold up the tent when it’s really dark. Sure you look at the idea, but the person

is more important than the idea.”

Toward the end of our conversation, Schwartz was reminded of something his father had once told him.

“He said I could learn from every loss. That losing doesn’t make you a loser. That failing,” Alan added, “doesn’t make you a failure.”

As I’ve grown increasingly fond of saying since my diagnosis with ALS, you can’t control what happens to you, but you can control how you respond to it. The same is true in business. We’ve already established that active curiosity is a virtue in the workplace, but the appetite to learn and to master is only effective when joined with drive and a dedicated sense of perseverance.

Dr. Jeffrey Trent, the CEO of the genomic research laboratory TGen, told me something he’d heard from a former congressman from Kansas. “In the Congress,” Trent told me, “the answer to the question ‘Do I have your support?’ is usually ‘I’m with you as long as I can be.’

Think of the difference between people who are with you to the end and those who are with you as long as they can be. I want the ones with me to the end.”

Don’t we all? In business, as in life, curiosity matters, but perseverance pays. Stay to the end. Always be persistent. augiesquest.org ABILITY 25

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Mask by artist and workshop participant Linda Gibbs.

Photo by Dr. Ericha Scott.

A

nationally certified counselor who has worked with a variety of patients to combat mental illness and addiction for nearly 24 years, Ericha Scott takes personal pride in helping people become their best possible selves. Her career has seen her adopt many disparate roles, from college professor to art therapist to television host.

Scott, who in 1983 began recovery from co-dependency in a Terry Kellogg workshop with her father and brother, possesses a unique understanding of the healing process. In an interview with ABILITY Magazine’s Chet Cooper, she explains her unique ability to synthesize art, expression and psychology in a continued effort to improve and save lives.

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Chet Cooper: My first question is a pretty basic one: how do you define art therapy?

Ericha Scott: In very general terms, it’s the process of creating and using an image to help heal the mind, body, and spirit. Poetry, sculpture, painting, drawing. Any kind of expressive process.

watching, it helped her quit denying the truth of the tragedy of her experience, it helped her move through some assignments I had given her. She began to actually do her assignments, which helped her move forward and heal. I would even say it was therapeutic for me, because I witnessed someone move past her prison into something profound and beautiful.

Cooper: And how is this art used as a form of therapy?

Cooper: That sounds great.

Scott: I use many modalities. When I was working at Sierra Tucson, I helped facilitate psychodrama therapy.

Scott: There was another great experience, when I was still working in that same unit at Sierra Tucson. We had a client who was young and very beautiful. She had been raised in a very religious home and yet had gone awry with alcohol, drugs, and had been a strip-tease dancer. She had begun to toy with prostitution. Obviously this was a problem.

Once I was working with a woman who was the wife of a diplomat, and she was very polite and she smiled a lot, but actually was not very kind when she spoke to people. She alienated her peers with that contradiction in her personality. She had been abused in a concentration camp when she was very small, but she denied having a traumatic history. She also denied having any talent for art, but I noticed that when she moved, she walked very gracefully. She walked like a dancer walks, with a certain poise and beauty, really.

Unfortunately, she was so stuck in herself, so stuck in her past. So to facilitate her process of healing, I asked her if she would dance her experience in the concentration camp. At first she said, “No, I can’t dance,” so I offered to dance with her. I can’t dance, myself, but I offered to dance with her to help reduce her fear and shame. I stood up to dance with her, but she, from some place, rallied the courage to do it herself, and she asked a peer to make the sound of the concentration camp sirens, you know that [whistles]?

Cooper: Oh, you were in a group?

As it turned out, we didn’t have enough women in the group to play her in all the ages of her life, so she asked a few of the men who were sexually addicted to play her. At first I thought, “Oh, this is not good! This is going to be a comedy, and not a good one!” So I just held my breath and literally prayed.

Scott: Right. And she began to dance. I was a little worried that she would do a dance like you might experience from a junior high school skit, but that’s not what she did. She stepped into the space and time of dancing her childhood experience: being a little girl, separated from her mother, watching the soldiers beat someone who was looking for her child. She danced the mother, she danced the soldiers, she danced herself, she danced the whole scenario. The room was totally silent. People were so moved by the authenticity of her presence and by the truth of her story.

What happened that surprised me is that I had underestimated how much the men cared about her and how much they were worried about her. Here were these heterosexual men who really played their hearts out in her role. I mean, they put lace on and pretended that they were shimmying up and down a pole and rolled their pants up and there was not a joke or a wink or not one second of inappropriate action there. And it was incredibly moving.

Cooper: And that kind of therapy is called psychodrama?

She provided them with the thoughts that often went through her mind when she was dancing, which included, “You stupid sucker, you think that—”

Scott: That’s right. It’s a use of the theatre. Normally we don’t have people dance in psychodrama, but for her, it turned out to be the perfect modality. The peers she had alienated came to have compassion for her as they watched her dance.

Cooper: That sounds like therapy for everyone, then.

Scott: Everyone. It softened the hearts of the people 28

A woman at the unit named Carol Roth was the facilitator for those people who came to us for treatment of sex addiction. Most of the people in her group were men.

We did psychodrama with the two groups, which, as you can imagine, are fairly intense groups of people. We were all very concerned about this young woman, and we talked about how to set up her psychodrama. Ultimately we decided to set up her stages of life, her youth, her innocence, her budding sexuality and passion for life, and her experiences as part of a very restrictive, judgmental religious family, and then to move into the pole-dancing and the prostitution aspects of her life.

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Cooper: “—you’re in control of me”?

Scott: Exactly. “You think you’re in control? I’m in control.” The blessing of psychodrama is that it heals everyone in the room. For the men, this broke their fantasy about what they thought they were seeing when they went to the dance club. And for her, this allowed her to see herself played, to see that the role she was playing

Workshop artwork developed by a recovering addict.

wasn’t real for her. She saw that it was painful and dangerous, because she was so young. So that was a particularly moving psychodrama. And I’m surprised that I’m talking about psychodrama so much, because that’s not my primary modality.

Scott: Yes. It was almost as if the art paper, the colors, the lines, the images were all another therapist. That enabled me to align with the client and support him, rather than become adversarial in trying to get through his denial and minimization and defenses.

Cooper: What is your primary modality?

One of the things I often do in my therapy sessions is, I use miniature figurines in a sandbox. Those allow the client to very quickly access his subconscious and his archetypal image, a role, a place in the world. It’s especially helpful for those who are afraid of art, or who are afraid they might not be talented or creative.

Scott: I use a lot of imagery because my background is in art. I have a bachelor’s degree in art and I studied art in southern France with Sarah Lawrence, and I had been an artist well before I became an art therapist. So when I first worked as an addictions therapist in 1985, my supervisor said, “Why don’t you use art therapy?” And believe it or not, I said, “What’s that?” I had no idea— even though I’d been an artist and was working with addicts—I had no idea what that was.

Once I started making use of art therapy, I was stunned that art was able to say more than the clients could say about their addictions. Art seemed to bypass their cognitive defenses. And what I really liked is that I didn’t have to confront the client. The art confronted the client.

Cooper: It sounds almost like a third party that you deal with.

Cooper: You’re calling this art therapy, but in some sense this figurine activity might not be described as art, per se.

It’s more as if you’re using these figures as avatars.

Scott: That’s exactly true. I’m a board-certified art therapist, but I’ve found there are often parallels between art therapy and sand play therapy. The sand play therapists have their own certifications separate from art therapy, but many art therapists also use sand play. Sand play therapy and sand tray therapy are just two different theoretical ways of facilitating therapy.

Over 20 years ago, when I was designing a project for ABILITY 29

children in a museum, I noticed that children who were given open-ended art projects—like making mobiles, for example—were engaged and were amazingly creative if no one interfered with them. They were calm and behaved properly. We had no problems with discipline in those cases, because for the kids it was great, it was fascinating. But I find that many addicts who come to treatment have a hard time concentrating and focusing.

They’re shame-based and often have learning issues, if not learning disabilities, so you can lecture to them until the cows come home, but it likely won’t get you very far.

Cooper: In a sense, this basically advocates for the opposite of what we all usually talk about: thinking outside the box. You have your patients think inside the box with sand therapy, it seems. As long as they stay in that box, they’re really doing well and they’re engaged. But how do you keep them in that box and also help them build a well-balanced life?

Scott: It’s difficult. I became hooked on art therapy in 1985, when my brother had developed some sort of brain mass. We don’t know what it was. The doctors had done a CAT scan and could see a mass, but they weren’t sure if it was a tumor or what. My brother was slurring his words. His ability to walk and to speak were affected.

At the time, I had recently heard of art therapy. I was excited about it. I had read a little bit and was in my first year as a therapist at that time. So I took a sketch pad and some pencils and asked my brother to draw the brain mass as a monster. I didn’t really suspect anything. I just thought it might help reduce his anxiety.

He drew. I turned the page. I had him draw it smaller. I turned the page. I had him draw it smaller again. And overnight, the brain mass disappeared. He was discharged the next day. So I choose to believe that that was a miracle or was somehow facilitated by art therapy. The power of that potential really grabbed me. That’s why I went on to get a doctorate and to study art therapy as long as I have. I’ve seen that kind of turnaround with people repeatedly, using not just words but image or shape or color as ways to tell their story.

Cooper: How’s your brother doing now?

Scott: He passed away. But the brain mass never returned. He lived for five years with AIDS and he died.

But the brain mass had never become a problem again.

Cooper: And you’ve found that art therapy helps with a wide range of clients?

Scott: It does. I once facilitated sand tray therapy with a client who had relapsed multiple times in front of his therapist. At the end of the session, the therapist said, “I have never seen him concentrate or stay engaged in a project for such a long period of time. Ever.” The therapist was just amazed. What was interesting was, this 30

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client was a young man who had been in trouble with the law and who had been in every kind of trouble you can be in, but he treated my miniature figurines with reverence. That was very touching. He took it seriously, without cynicism or sarcasm or any disrespect whatsoever.

Cooper: What kind of figurines are these, exactly? How do you use them?

Scott: I have well over a thousand rubber figurines. Some of them I’ve bought from traditional sand play figurine shops. For example, I have human figures of five different cultures and three generations. Some of them are elderly. Some are young. Some are professionals. Some are babies. Asians, African Americans, Caucasians.

Cooper: And you use figurines that match up with individual clients?

Scott: What I try to do is find a wide spectrum so no one’s left out, so no client will feel left out when she comes to look at the selection that I have. I don’t change my selection for different people. I just ask my clients to choose figurines, as well as a theme or an issue to address. Sometimes I ask them to choose a polarity in their lives.

Cooper: Can you explain that?

Scott: For example, addiction-sobriety might be a classic polarity for an addict. Happiness-sadness might be a polarity. I ask the client to choose the polarity. Sometimes I ask her to portray her first drinking experience or the first time she ever used drugs. It depends on the client and what she needs and what she’s bringing to the session. I ask the client to choose figurines that seem to call to her. It’s an intuitive process.

A lot of art therapy revolves around the idea of projection, the idea that art is a mirror. When I was in Arizona, I worked with a woman who had an eating disorder. She was extremely anorexic. It’s very difficult to help an anorexic break her delusion of her fatness when she is very, very emaciated. I had this woman do a series of self-portraits, body maps, body tracings, as well as what I called “blind contour” self-portraits.

Eventually this client said things such as, “I’m too thin.”

So, again, the paper was the other therapist in the room.

If I had told her that myself, she would have argued with me. She said, “What have I done to myself?”

Those are statements that emanated from her spontaneously in the therapeutic process. Those were her “Ah ha!” and “Eureka!” moments of awareness.

Cooper: After a situation of discovery like that, does a client ever relapse?

Scott: There’s a high rate of relapse. I do know that, since I’ve been in the field for 25 years, I’m finding that

the rates of relapse seem higher than they did when I was younger.

Cooper: What do you think the causes or the triggers are for people to find themselves in that situation of relapse?

Scott: I can’t say for sure. I know that when I began as an addiction therapist in 1985, I had the lowest relapse rate of any therapist in my two-hundred-bed hospital. But that was 25 years ago. While there was profound addiction and profound trauma in ‘85 and through the ‘80s and the ‘90s, it seems as if there was a better community to support people back then than there is now. I think there’s more alienation today.

Cooper: Was there a financial trigger for that change?

Scott: I don’t think that’s all of it, but some. The drugs used today are more toxic. Children are starting drugs sooner. For example, in ‘85, if I saw someone with brain damage, it would be someone who had been drinking for 30, 40 years and was in his sixties. Now I’m seeing kids in their twenties with evidence of brain damage from methamphetamine and crack cocaine.

I work with multiple addictions so, in my opinion, if someone comes in with a drug and alcohol addiction and doesn’t address his secondary issues, he’s more likely to relapse. If someone comes to me to work with chemical addiction, I ask about other potential addictions. Maybe he’ll quit drinking and taking drugs, but if he also has an eating disorder, things escalate. If there’s a gambling addiction, things escalate. We have to look at addiction across the board. It’s one thing to have a neurological impact later in your life, after you’ve had children, after you’ve had a life and a career, but now I’m seeing it earlier. That concerns me.

There’s a lot of pressure on young women, in particular, to be thin and beautiful. Naomi Wolf, in The Beauty Myth, talks quite a bit about the impact of the beauty myth on women and what she calls the “sex industry” or the “sex trade”. It has a profound negative impact on our young women and on women of all ages.

Cooper: In patients who are dealing with anorexia, do you find that they’re only looking at “society’s view” of what women should look like and essentially can’t see themselves in the mirror?

Scott: Yes. And a lot of that comes down to family dynamics. Often young women with eating disorders are very driven and are perfectionists.

Cooper: Is there some obsessive compulsive disorder in there?

Addiction therapy patients utilize artwork to illustrate their inner thoughts.

Scott: Absolutely.

Cooper: So you have to treat other issues as well. Not just the nutritional problem. You can solve one problem but the overall issue has still not been solved.

Scott: Exactly right. For example, when I was working with eating disorders at Sierra Tucson, we would look at the basic logistics of what clients were eating, how they were eating, and how they were exercising. But we’d also look at issues of self-esteem, at issues of being compulsive and perfectionism. So it needs to be a very comprehensive program.

I came up with my own model of art therapy for people who have addiction and trauma, and often there is a correlation between the two. My model starts with authenticity, because so many people don’t know how to be themselves in their own skin. They don’t know how to tell their story, or they’ve never told their story, or they minimize and dismiss very powerful, impactful events in their lives.

Cooper: This is something you use in your practice?

Scott: This is my own theory. I call it the “Eight Essential Process.” It’s been published. It’s not a stage theory, but it outlines what needs to be attended to with clients when they seek treatment. It addresses projection, helping ABILITY 31

A life-size “body map” of a female sex addict.

Body maps are composed during therapy by patients to illustrate their self-images.

them see themselves in the mirror of what they are creating, whether it’s writing or poetry or sculpture or painting or psychodrama. And catharsis: the ability to express and to feel some relief from their productions.

A bone surgeon once approached me at one of my workshops and asked, “How do I portray my own surgeries? It’s been difficult for me.” And I said, “I believe you’ll figure it out.” There were 60 people in the room, ripping pages out of their notebooks. I turned to look at the surgeon, and he was beaming. He was joyous.

Because for him, the ripping of the paper represented surgery. He had found what he was looking for.

I see that with my clients. The therapy helps bring relief and a chance to express the things that they have suppressed over time. It helps them find a locus of control.

Some clients come to treatment and say everything is everybody else’s fault. Other clients come to treatment and are convinced everything is their own fault.

Cooper: Both are victim issues?

Scott: Or perpetrator issues. The irony is, perpetrators tend to talk like they’re victims, and victims tend to talk like they’re perpetrators. So victims will say, “It’s all my fault,” and perpetrators will say, “It’s all everybody else’s fault.” So basically we’re trying to help people come to accountability for themselves and not take accountability for things that other people have done.

Cooper: Trying to get them to gain control.

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Ericha Scott’s sandbox and array of figurines, used in therapy sessions with patients.

Scott: Trying to get a balance. I should take responsibility for what is my fault, but I should also hold other people accountable for what’s their fault. Looking at developmental issues is really important. For example, I ask many addicts to look at their inner children, to begin to nurture themselves. It’s a way of loving. A lot of people can’t look in the mirror and say, “I love you.” But if they imagine their child selves, they are more likely to have compassion for themselves. And they can begin self-love in that way, by loving that concept of themselves.

Cooper: By reconnecting with their more innocent years?

Scott: Yes. And then we begin a process of integrating our polarities: active addiction and sobriety, sickness and wellness, happiness and sadness, and integrating our inner child. It’s amazing, the shift that can happen inside of a client as he tells his story of addiction history or trauma history. And that shift can be permanent. It’s not always permanent, but it can be.

The reality is that using art in addiction treatment really helps keep the clients engaged. Often, if there is art therapy involved, they are more likely to stay in treatment until they finish their treatment goals. That’s enormous.

It makes all the difference. artmanna.com In the next article, Dr. Scott interviews artist Alicia Rojas about art’s unique ability to change self-perception.

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“When I paint I feel like I go to a place where, for a moment, I don’t exist and my sorrows don’t either.

It is an enigmatic trance and, in that space or glance of it, everything fits. I find that overwhelmingly beautiful.”

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painter who uses photography and mixed mediums to express her emotions in the form of self-portraits, Alicia Rojas has been interested in art since she was a young girl. But it was at age 27 that Rojas’ work became more personal and intimate.

“I suffered what I’d thought was a mental breakdown,” she said. “For a year all I could do was paint, and all I could paint was myself. I felt like maybe this way I couldn’t be ignored, my feelings couldn’t be put under the rug and I could tell the world what was really going on deep inside me. It was raw, loud and colorful. It could not be ignored anymore.”

Rojas recalls that her experiences emigrating from Bogota, Colombia to America provided a series of blessings and challenges that have influenced her work as an expressionistic painter.

“My art is a self-explosion of years of suppressed emotions,” she confides. “These are emotions that were tucked away because of social and cultural stigmas and because of family responsibility.”

Influenced by artists such as Dan Keplinger, Frida Khalo, and Vincent Van Gogh, Rojas describes acrylics as her “best friends” in the early stages of her artistic expression, because they dry quickly and accommodated her initial need to paint from impulse. In an interview with Dr. Ericha Scott, Rojas reflected on her progression from anxiety and depression to a sense of greater wholeness as an artist and as a woman—a journey from mental illness to mental health.

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Dr. Ericha Scott: Let’s start by thinking back to one of your first experiences with art, maybe even in childhood. Something that really stood out for you as important in a vivid way. Does anything come to mind?

Alicia Rojas: Art has always been a part of who I am, though my need for it to be a part of my life has become stronger as I’ve grown older. Some of my strongest memories as a child involve looking at my father’s paintings. It was years before I had realized that one of the paintings we had in our living room had actually been painted by my father. When I was five or six years old, I became really curious about why my dad didn’t paint anymore. That’s one of my first vivid memories.

As far as my actual experiences with creating art are concerned, I was always drawing, and I started with photography at an early age. But I never really started focusing on art as a serious hobby until high school, at which point I took an art class and had an art teacher who was a very encouraging person. That changed my perception of what art could be in my life.

Scott: What was your father’s painting of?

Rojas: That painting in the living room? It was of a drunken clown. It was of a clown leaning on a post, an old lamppost, on a street that looked sort of European.

Scott: Was that clown anyone whom your father might have known?

Rojas: I’ve never asked him. Now I’m going to have to.

Scott: Where was this? Where were you living?

Rojas: In Colombia. The painting used to hang in my grandfather’s living room, and then it became my dad’s after my grandfather passed away. But my dad was the one who had painted it.

Scott: What a sweet story. Much of the artwork I have from you—I have your later work and not some of your earlier pieces—are self-portraits and, therefore, somewhat autobiographical. What do you want to tell us through your self-portraits?

Rojas: You know, in the beginning, I didn’t want to tell a story. The pieces you have are a demonstration of how my art has evolved. I’d like to send you a couple of my first raw self-portraits.

I actually started painting out of some sort of personal necessity. It just happened. I can’t put it into words. I had to get it all out. I remember that someone had given me a little kit, years ago, with oils and paints and little canvases and things like that. As soon as I saw it, I was like, “Oh, my God, I’m going to draw! I’m going to paint now!” I just started painting myself from the mirror. I was going through a very bad depression, and it 36

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was the only thing that I wanted to do. I painted over 100 paintings over a year. Not all of them made it, but yeah, I painted a lot.

find other sources. I’ve come to realize the emotional sources that put me on this artistic path don’t have to be so painful, because that phase of my life is kind of over.

Scott: When you’re painting, what are you generally feeling?

Scott: It sounds as if art helped widen your worldview.

Rojas: That’s changed over time, actually. I feel as if I have a couple of faces now. Now, I’m more self-conscious about my work. I have a clearer understanding of what I’m doing. I’m more critical of myself.

I’ve learned more about painting through my own experience of doing it than through anything else. I’ve never really taken a painting class, but I’ve taken art classes and I have an associate’s degree in graphic design and photography. So nearly everything I’ve learned has been from experimenting with my own methods. But there’s still a big emotional attachment to my work and to my process that I’m still trying to understand.

There was about a year in which I couldn’t paint, which was really difficult. But my old process, the one I employed when I first started, stemmed from a very bad depression. I guess you could say I was lost. And painting kind of found me, I found it, and I felt like painting myself. That’s all I could do. It was all pretty emotional and raw and depressing, and there were a lot of self-portraits of sadness. But I guess the process itself was a healthy one. I survived it.

Rojas: I think art saved me, because art could listen and not talk back or not be critical or be judgmental. It was purely for me. It was a nakedness, it was how I showed who was really me. And I guess I had really bad communication issues, early on, so this was my only way of expressing myself. I couldn’t really speak what I felt. This was my only way to communicate to whomever what I was feeling.

Scott: It’s powerful. I really like your work.

Rojas: Thank you.

Scott: What artists influence you now?

Rojas: There are many, but I was very lucky to meet one, through ABILITY Magazine, and I think that day completely blew my mind. His name is Dan Keplinger. I don’t know if you have ever heard of him.

Scott: I haven’t.

Rojas: He was at the center of a documentary, King

Scott: What inspires you? Is it something internal, or do you need external stimuli to— Rojas: When I’d first started, it was all coming from an internal, emotional place. It was all pain. That’s what drove me. But now there is actually art and curiosity and a general sense of wanting to learn more about artists and what I see. I take my process more seriously now, and I guess that can sometimes be an impediment, too. When I was crazy, or not completely there, I didn’t care about the work. It just needed to come out. I wasn’t looking for any kind of approval or recognition.

Because I was not completely there, psychologically, there was no consciousness of what my work looked like or what people thought of it. It didn’t really matter to me. I just ended up at a gallery by chance.

Scott: How did the art get you from there to here? It seems as if it was very much part of your transition.

Rojas: I had found my calling. I had always known I was going to be involved in some kind of art because I love art. I love photography. I love community. I love an awareness of things. But it’s also a tool for healing. I think I’m going to have to do it forever. In my worst states, on my worst days, art comes out all the time. It has changed, though, because I’m not the crying girl any more. So it’s kind of difficult, because my art initially came from a lot of pain, and now I’m trying to ABILITY 37

Scott: Do you remember a particular turning point in your work, at which you realized you weren’t writing out of depression anymore?

Rojas: I painted “It’s All Happening” some time in November, October of last year. I think that was the first one to break me out of my self-portrait tears. [laughs] I think it marked a transition in my understanding of where my depression and anxiety were coming from. I wanted to break away from that place. I wanted to put myself in black and white, representing that I wasn’t really there. The mirror in the painting is the same mirror with which I’ve painted my old self-portraits. It’s a portable mirror that I’ve had forever.

Scott: Is it a triptych mirror that you can stand up? Is it on the wall?

Gimp, through HBO. It won an Emmy. Around the time of that documentary’s release, ABILITY was holding an interview with him. He has both an amazing spirit and a crazy physical impediment, but he still pulled through in showing people his art. I found that to be so inspiring.

He has severe cerebral palsy, and it’s really hard to understand him when he speaks. But I was in a weird trance in which I could understand everything he was saying. It was great. I really connected. That conversation changed my life forever. He was my first big influence, for sure, because I had the chance to meet a real artist, to actually meet him, not just to see his work, and then I saw his work and found it amazingly motivating and inspiring.

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Rojas: Yeah, it’s a little Mexican mirror, and it has little doors that you can close and open. So when they’re closed you can’t see yourself, and as they open, there’s the big center image as well as little side images. That’s the mirror I started painting from, so I felt it was important to include it in my work. I wanted to show my vulnerable side—maybe that’s why I don’t have any clothes or use any color—so that it represents a transition from my old self. A rebirth.

Scott: One of your pieces is titled “Anxiety”. Is that as self-explanatory as it seems?

Rojas: Well, I painted “Anxiety” and “Self-Portrait” very close together, within the same month. I’m always going through anxiety, but at that time, I wanted to represent it physically, what it does to me. The oppressions or suppressions of emotions really affect my digestive system,

creating what feels like a burning hollow in the upper pit of my stomach. That’s pretty much it. I actually had a lot of fun with that one, because it stemmed from a sketch I’d done years ago that I wanted to try to put into a painting. I usually don’t sketch and paint, but sometimes it just happens. So this was another evolution, I guess.

After I’d painted “Self-Portrait”, some friends and artists who have known me for a while now felt that it kind of broke the mold of what I had always been painting. I think it’s definitely an evolution. They found it more photo-realistic.

They found it to look more like me. Which, in a way, had me a little concerned.

I’m not a photo-realistic artist.

Scott: Do you still feel as motivated to paint and create as you once did?

Rojas: Yes. I think art is a big part of humanity and of the communication of it. In the beginning, when I started painting, it was maybe from a narcissistic or selfish place. My work was all about me and my feelings. But then I found out, as I kept painting, that my life really began to happen. I ended up in a gallery and now I’m asked to show my work at other places and things like that.

In the beginning, things were hard because I was working with images of myself. It’s not Laguna Beach in those works, it’s really me. So I was really putting myself out there, and I felt very vulnerable and very self-conscious. But everybody feels this way once in a while. Everybody feels that lonely place, especially people who have suffered through anxiety or depression or through any kind of mental illness, schizophrenia, bipolarity. It’s nice to be able to relate to other people and to say that it’s okay to be whoever you are. Art can really save the world.

Scott: It can! I believe that it’s essential. It’s tragic that it’s being taken out of some schools.

Rojas: It’s very tragic, yeah. Art makes you a better individual, makes you more able to think outside the box and connect to things that are not so rule-directed or taught. I think it helps develop critical problem-solving skills for kids. And it’s unfortunate that art is always the first thing to be kicked from schools, because art can help solve or alleviate so many problems for kids who are having trouble with gangs, with identifying themselves, parents, integration. Art is sometimes the only outlet there is.

Scott: Your work seems to be about you but also very much about the rest of us at the same time.

Rojas: Yeah, I guess that’s what I’m coming into with my work. Everybody has something to share. I want my work to say, “Hey, you’re not alone. These feelings happen to a bunch of us.” There seems to be a need for that, especially now, a need for connection to people and a need for empathy and compassion and understanding. Our feelings shouldn’t be taboo. They are real. Everybody goes through them, and nobody has a perfect way or a perfect path or a perfect life.

I deeply believe that my art not only is a self-healing tool but also a personal responsibility, by creating awareness about mental illness and by sharing my immigrant experience. When I paint now I feel like I go to a place where, for a moment, I don’t exist and my sorrows don’t either. It is an enigmatic trance and, in that space or glance of it, everything fits. I find that overwhelmingly beautiful.

Alicia Rojas’s work is currently exhibited in downtown Santa Ana, CA, at AvantGarden Art Gallery in the historic Santora Building. dartavantgarden.com aliciarojas.com ABILITY 39

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Photo by: Nancy Villere - CrushPhotoStudios.com

issance mething of a Rena so is ll he itc M ll” aryl “Chi producer, an actor, director, Man. His career as ic speaker and comedian might bl it’s all part of writer, musician, pu g, but to Mitchell in lm he w er ov as rs les on shows strike othe joyed recurring ro en he s, ar ye r Fo Larroquette Show. the game.

Ed, and The John , et os Cl ’s ca ni ro life, Mitchell like Ve injury changed his ure that kind of rd co al in sp a r te But af recapt dering if he’d ever found himself won FOX sitcom Brothers, in which his iner took success. Fresh off head-on, the enterta Chet y lit bi sa di s hi d le Mitchell tack ITY Magazine’s terview with ABIL time for a phone in how fighting his way back into the sed Cooper and discus ely a new experience. tir en ’t isn am mainstre

D

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Chet Cooper: You call Georgia home now?

Daryl “Chill” Mitchell: Yes, sir. Sugar Hills, Georgia.

I’m from the Bronx, but I’m just like everybody else, man. After we make it big in New York, we come to Georgia and hide out.

Cooper: It was good to see you at the Department of Labor event the other day. You’re a pretty strong advocate for employing actors with disabilities.

Mitchell: Oh, yeah, yeah, definitely. You meet with these Labor Department guys, and you can tell everybody is enthused and ready to go. That’s the main thing, really. Their willingness to fly out from Washington and see us in Los Angeles and speak with us says a lot about them. But it’s really a matter of what we need to do, what we’re willing to do as people with disabilities. We need to be more boisterous. We need to let the world know that we’re here.

Cooper: When did you become a person with a disability?

Mitchell: I had my accident November of 2000.

Cooper: Were you involved in anything related to the disability movement in your pre-accident life?

Mitchell: Well, prior to that incident, a friend of mine was a victim of random violence. He was standing around with a friend of his when some guys driving by just opened fire. I think the shooters had had a problem with a rival group of people, went to retaliate, but didn’t realize that the group they were firing on definitely wasn’t the one they were looking for. So my friend got hit.

That all happened maybe eight to 10 years before I got hurt. So being with my friend and doing things with him and going places with him opened my eyes a bit. He used to visit me in Los Angeles when I was doing The John Larroquette Show and doing movies with Martin Lawrence. He’d come out and hang, and I could definitely see how important accessibility was, just by being with him. When I got hurt, it was a blessing that he was one of the first people to show up at the hospital.

Cooper: That’s great he was there for you.

Mitchell: He was there for me. And from day one, he showed empathy, but he didn’t show sympathy. Man, he was like, “Get it goin’ right now.” He was very much of the mindset, “This is just what it is and you deal with it.” He was there for me, as any good friend would be.

Cooper: How have your feelings changed about disability after an experience like that?

Mitchell: You know, it’s interesting. I look back now at a person like Stevie Wonder. I look at a person like Ray 42

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Charles. Those were really the only people with disabilities ever put in the front of me, but their situation was never presented to me—or, I think, to anybody in the black community—as a disability. Because when you are a person who is already kind of socially disabled, who sometimes doesn’t count, disability is just another sense of not being able to do something.

So with African Americans, to some extent we’re talking about a whole race of people that was already given a disability because of various social issues. When it came to Stevie Wonder or Ray Charles, I never looked at them as people with disabilities. It might have been a great educational tool for me if I had, you know, in the sense that I would know that this is what a person with a disability is, and this is what he does to overcome his disability. But to me they were just Ray Charles and Stevie Wonder. They were blind and they were talented. But they were never “disabled”.

So I just never thought about it. Because when you’re busy grindin’ and tryin’ to make it happen, you don’t have time to stop and look at certain things in a certain manner. You just look at those guys and think, “Okay, they make it happen. Let’s just keep it movin’.” Those two men have been blind as far back as I can remember, but they were primarily two black men who came from the bottom. They were just part of another set of people on the bottom.

Cooper: It’s interesting that you’re able to relate this to the reality of racial differences. Do you notice much difference between issues of disability as a general grouping and issues of minorities with disabilities?

Mitchell: Oh, definitely. I know The Christopher Reeve Foundation has statistics on that, and has documented evidence of African American and Hispanic wheelchair users who are not being counted.

Cooper: They’re not being counted?

Mitchell: They’re not being represented, no. When surveys take a look at how many people in America use a wheelchair, a lot of times the African American and Hispanic populations are not being counted.

Cooper: I’ve definitely seen data that would suggest that the more minority categories a person belongs to— because as you know, disability crosses everything—the more difficult it is for him to find employment.

Mitchell: Definitely. But that ain’t no news to me, you know what I mean?

Cooper: Is there a part of your personal mission, if you want to call it that, that feels a responsibility towards helping African Americans with disabilities?

Mitchell: I don’t know. I mean, that would be like saying

Photo by: Nancy Villere - CrushPhotoStudios.com

Before his starring role on Brothers, actor Daryl “Chill” Mitchell appeared in the films Galaxy Quest and Inside Man, as well as television series Veronica’s Closet and The John Larroquette Show.

I would advocate only for people with disabilities who happen to use wheelchairs. But I can’t be like that. It’s not only people in wheelchairs who pay attention to me, who pay attention to my movies, to my work. So I can’t just advocate for people in wheelchairs. In the same sense, I can’t just advocate for black people.

But at the same time, I suppose I give the African American and disability angle some type of special attention because these are the things that affect me as well. But it ain’t gonna be the only thing that I advocate for, personally.

Cooper: I have the same issue. I have to advocate for people who are really attractive, because I am what I am. (laughs) Mitchell: You know what I mean? (laughs) “Hey, baby, it ain’t my fault! God made me like this!”

Cooper: I’ve met a lot of people who have acquired disabilities later in life, rather than having been born with them, and there often seems to be a sense of awareness: “I think I need to be an advocate.” But thinking back on your pre-disability life, what could have motivated you to get involved in a movement that you might have assumed was never going to be a part of your life in the first place?

Mitchell: You’re asking, if I don’t have a disability, why would I want to get involved?

that. But it starts in your heart, and you’ve got to know what’s right.

I can’t speak for other people, but I know what it’s like coming up from the bottom. A lot of people don’t understand that experience. When you finally get a shot at success and you get up on top, you want to bring your people around. You want them to have a good time.

When I found success, I put on a big party in Atlanta, invited everybody from my community. We got a bus and everything, everybody came out, I had 400 people in my yard. But you do something like that because your heart tells you. That’s where it starts for me.

You’ve got to want to make a difference for somebody.

So that’s why when they call me out for Make-A-Wish Foundation, pediatric AIDS and causes like that, I still support these things.

Cooper: But that’s coming from your desire to help, from your own kindness. You had mentioned earlier that, in the cases of Stevie Wonder and Ray Charles, you were never even thinking of their disability. You were thinking those were great guys who sing well and play good music and entertain. But you never thought “disability” per se.

Mitchell: Right.

Cooper: So how do we tap into that place in someone’s psyche? The place where the disability isn’t even on their radar.

Cooper: Yes. Mitchell: It starts in your heart. I mean, I was always an advocate for the Make-A-Wish Foundation. Even before my accident I used to be involved in things like

Mitchell: Well, the powers that be have to implement us into the fabric of life and tell the rest of the world that we count. It was the same thing that was done with the African American community. Once the President ABILITY 43

essentially said, “You know what? Every man is created equal and we’ve got to make this right,” then we started to implement that philosophy and much of the rest of the world followed suit.

It starts with the powers that be, the guys up top, because there’s only so much that we can do. We can make noise, but they’ve got to accept that noise and include us. We need inclusion. That’s the biggest thing.

That’s why it’s important that the US Department of Labor came down to speak with us, because by doing that, they’re saying, “You know what? We’re going to let the world know that you guys are here.”

Once the African American community got that sort of backing, we were allowed to let the world know it. We had people out there to say, “Yes. Let them in the party.

Let them on the court. Let them play ball.” That’s what we needed. And that’s what’s starting to happen right now, I think, for people with disabilities. Are things going to change overnight? No. Mindsets have to be changed. But see, once you get yourself in the room and let people know that people with disabilities can do the job, then that’s when things will change. We know what we can do. We just have to be allowed to do it. That’s where the powers that be come into play.

Cooper: Grassroots advocates might say the opposite of what you’ve just said. They might say that all meaningful change is going to be from the bottom up. I think it’s both.

Mitchell: (laughs) Sure.

Cooper: But the achievement of you getting your own show, starring as the lead actor, that’s a step in the right direction. How did that opportunity come about?

Mitchell: That came about because Michael Strahan wanted to do television. And I was looking for a show. It’s crazy, actually, because I had met Michael five years prior to that, and he had told me, “If you ever need me for anything, give me a call.” So I called him. When I found out he wanted to do a show, I was all for it. But see, I knew I was going to have to stack the deck—because in primetime television, it’s just so hard to get a show on the air.

My main tactic was to hire Michael Strahan, knowing we would get a lot of publicity because of his football career. So we came together to produce the show. I told him: “We’ve already got a story. Your life is a story and my life is a story, so let’s just build the show around our lives. I had this accident and you are a retired football player.” We put a little bit of fantasy around it to make it interesting.

Once we had that, I started utilizing all the relationships I’d built with people in the past. We got Don Reo, who had produced Blossom and who was a writer on M.A.S.H. and My Wife and Kids. He had worked on The John Larroquette Show with me, 20 years ago. I got 44

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him on board, and I knew Kevin Reilly from NBC, who is now over at Fox. Eric Tannenbaum, who was the producer, had produced Two and a Half Men. I snagged all these strong, powerful people. By the time we went to pitch at Fox, everything was in place. We got Carl Weathers, CCH Pounder.

And then Don Reo asked me, “Look, do you know somebody who can do music?” I was like, “Me. I do music.” So he said, “No problem. You got it.” I started soliciting producers to come into my company and started writing music for the show. We put all of these elements together into a package that a network couldn’t say no to. We went to four different networks, and three of them wanted the show. Three out of four networks wanted that show.

Cooper: That’s pretty good.

Mitchell: It was a pretty good pitch. We went out and did it, man. I was the producer, star, music supervisor, and I was eventually directing. And that gave me the opportunity to hire other actors with disabilities.

Cooper: Are you thinking that maybe there is another home for the show now, since it’s no longer on Fox? Mitchell: No, I think that project is over and done with.

It was a big show. It cost a lot to make. But I’m still meeting with other networks now to do something else.

People are pretty open to ideas once you come at them and tell them what you’re about.

Cooper: Yeah, I think that’s where I was trying to lead with my earlier question. How do you introduce the issue of disability to people who don’t realize they actually haven’t been introduced to it yet?

Mitchell: My answer is: do comedy. I don’t make light of the situation, but I present it accessibly. Whenever people are around me, I want to make them comfortable, because if I can laugh at myself, then they’re like, “Okay, it’s cool.”

We ain’t doin’ surgery here. It ain’t that serious. I’m still a person, I’m just an injured person. But I find that a lot of people are not comfortable around me because they knew of me or they knew me prior to my accident. I think because I was known on television, some people still look at me like I’m just going to get up and walk tomorrow. So there’s a whole other attitude when it comes to living as an entertainer, especially as a relatively well-known entertainer.

Cooper: When you’ve come across people you knew prior to your accident and engage with them, do you see a change in their attitudes towards you?

Mitchell: Yeah, sometimes. But you know what? I nip it in the bud, just immediately. Not through anything I say

Top (l-r): Brothers co-stars Michael Strahan and Daryl “Chill” Mitchell with rapper Snoop Dogg.

Bottom (l-r): Michael Strahan, CCH Pounder, Arsenio Hall, Carl Weathers, Daryl “Chill” Mitchell.

to them, just through my actions. I ignore your attitude and your behavior if I don’t like what you’re about.

Cooper: One of our writers, a wheelchair user, has said that when he’s traveling with his wife people always talk to her about him, instead of to him. He has to say, “I’m right here!”

Mitchell: Yeah, it’s absent-mindedness. Somebody talks over me and says to my assistant, “Does he want some water?” I’m like, seriously? It’s crazy. Or sometimes people ask, “Can I take a picture with him?”

way. The blind people, people with wheelchairs, amputees, want it another way. But I say, let’s all get into one car. Let’s all get ourselves on the road and then we’ll decide what we’ve got to do. We’ve got to get in the car first. That’s the thing.

When Martin Luther King marched, he didn’t march from Selma and announce, “All right! Now we’re gonna march in Florida!” No. We’ve all got to march together.

Whether you’re black in a wheelchair, whether you’re black and blind, black and deaf, we need to march together because we’re black. And that really is what it’s going to take. We’ve got to do this thing together.

Cooper: (laughs) Mitchell: If they want to take a picture with me, they’ll ask my assistant. “Can I take a picture with him?” It’s not that they’re being rude, it’s just a natural fact that they don’t know how to respond to my situation.

Cooper: It’s unfamiliarity.

Mitchell: I always tell people, it’s difficult to refer to your skin color or to civil rights without sounding militant or angry. But the fact of the matter is, this is what it is. The only reason why blacks were able to move forward is because we are all one color. The problem with disability, though, is that there are so many different types and groupings, and everybody wants to be acknowledged on their own merits.

Cooper: You’re right. There are silos within this arena called disability that actually conflict with each other’s agendas.

Cooper: So you do after all believe that part of this movement depends not on waiting for the top-down assistance, but also on the grassroots level to do it ourselves.

Mitchell: (laughs) Right. Once we move ourselves together, then the top’s going to pay attention. That’s what’s happening right now. They see we’re trying to make movement. We’re stronger united than we are separated. And that’s the same thing I said when my show was struggling. With so many people with disabilities in this country, there’s no reason people shouldn’t be watching the show.

Brothers was a big step forward for us in the industry.

Everybody with a disability who wants to be an actor should have been about campaigning for our show. I always told people, “It’s not my show, it’s our show. It’s monumental for people with disabilities that I got this opportunity.” And then, once I got that opportunity, it wasn’t as if I shied away from the issues of disability.

We made statements all the way across the board.

Mitchell: Right. The deaf people want to be known this ABILITY 45

I was driving a car on the show, showing people that we still move around. I had a girlfriend, I had everything. And as it turned out, I got more people without disabilities paying attention to the show than I did people with disabilities.

Cooper: But that’s key, right? You almost want to get people to watch your show without realizing what they’re watching. You’re just there, you’re living life, you’re having fun.

Mitchell: You’re right, that’s the thing. It wasn’t like a documentary, where you’re sitting there watching as somebody hand-feeds me. When you watch this show, you enjoy the ride.

Cooper: I guess it’d be good television if your girlfriend hand-fed you.

Mitchell: Oh, yeah, hey, you know what I mean? (laughs) Now you’re talking!

Cooper: How much stand-up comedy do you do now?

Mitchell: Oh, I go out, but it really depends on how much time I’ve got. I spend a lot of my time now auditioning or writing. When I’m down here in Georgia, I appear on Comedy Corner. I’m a motivational speaker, too, so I’ve got speaking engagements. Once I get on stage, it gives me a change to speak and crack ‘em up at the same time. I fit it all in.

Cooper: So you’ve honed a message. How long have you been doing motivational speaking?

Mitchell: About five years.

Cooper: What was your career like prior to your accident?

Photo by: Nancy Villere - CrushPhotoStudios.com

Mitchell: I was acting. I had just finished a movie called Black Knight with Martin Lawrence, and then I did another movie called The Country Bears. That’s when I came to South Carolina for a thing called Heritage Day, where everybody celebrates our South Carolina heritage. My nephew had a Kawasaki 1100 and asked me to ride it. I didn’t want to ride it because we had all been sitting around drinking and I knew he wanted me to do tricks and stuff. I said, “No, not tonight, bro.” But the next night, I saw him, pulled up to him. He threw me the keys and I jumped on the bike. But listen, I know you shouldn’t go out there horsing around on a bike you don’t know. You’re supposed to get out there and feel it out first, right?

Cooper: That would be the right idea.

Mitchell: Anyway, I went up a curve, at a place where there was only one road in and one road out. It was midnight, on a blacktop road. At the area I was driving through, the tide comes up high, and the water washes 46

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over the road. The salt eats up the blacktop.

I came around the curve and hit that blacktop, that loose gravel. The bike took off, I’m paying more attention to the bike than I am the road, and I go right into the ditch.

The bike fell right on top of me.

That’s when everybody was like, “Where’s Chill?” They knew I hadn’t come back down the other way. No one had seen me come back, but they saw the police cars shootin’ up the road. Somebody had seen the accident and had called the cops.

Cooper: That was fortunate.

Mitchell: Yeah, I was blessed that way. But I woke up three days later in the hospital, with a T-4 fracture.

That’s 90 percent of what makes things happen in the industry. I’ve got relationships going back 20 years, and I’ve done right by these people. My mother had always told me, “Respect can take you places money can’t.”

That’s what it all boiled down to.

Cooper: After accidents like yours, people often go through stages of anger, denial, acceptance. Did you find yourself going through those stages?

Mitchell: Yeah. In my opinion, a little bit of denial is good, because it means you’re gonna push yourself. But you’re always gonna find out there are some things you can do and some things you can’t do. When I got out of the hospital, one of the first things I did was buy a Hummer. That was just to let the world know about me. I was making a statement: “Look, you ain’t gonna stop me and you ain’t gonna leave me behind.”

Cooper: So you were unconscious?

Mitchell: Yeah. No helmet. It’s not state law in South Carolina. Usually I wear a helmet, sure, but this night I was thinking, “I ain’t goin’ nowhere.” You know what I mean? It’s like they say: people have an accident within three miles of their house.

Cooper: Right. That’s why I always stop within three miles and call a cab to go the rest of the way home.

Mitchell: (laughs) Cooper: Did you ever meet Christopher Reeve?

Mitchell: Oh, yeah. I work with The Reeve Foundation as part of their minority outreach program. I go and speak at their events.

My thing is, we can and should do more to get corporations aware of hiring people with disabilities. A cure is great, and we should definitely strive for it, but the reality is that people want to work. People need to take care of their families.

People need to be able the pay their mortgages and their rent and take care of their kids. More than anything, they want jobs. They don’t need handouts, they need jobs.

Cooper: At ABILITYJobs.com we have a resume bank at which anyone with a disability can put a resume up if they’re looking for work.

Mitchell: Right, right. That’s what we need.

Cooper: Where did you think your career was going to go after your accident changed your life?

Mitchell: The thing was, I knew I still had my ability, I just wasn’t sure people would give me a chance. That was my main thing. Fortunately my friends in Hollywood really stood up for me. They spoke for me. If they knew something was happening, they’d call my manager and let us know. I utilized my relationships.

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I tell people that adversity goes a long way. When you’re dealing with adversity, you learn about yourself. In a sense, as a black man, I’d already been there before. So this new situation was all about redirecting my energy.

Cooper: You’re saying you’d felt adversity before and already knew how to deal with it?

Mitchell: I’d been in places where people didn’t want me. I’d been to places where people looked down on me. I’d been there already. I wasn’t always famous, but I’ve always been black. You go through things where people discriminate. I know what that’s like.

Ultimately it’s nothing if you just keep moving. Like I said, this was just another form of the bottom. Are you going to be mad all the time, or are you going to be productive and let the world see you, let the world understand you?

I’ve been discriminated against because of my age, too.

I’ve been discriminated against because I was a rapper.

When I first came into Hollywood, I was coming in at it from the rap industry. A lot of people didn’t want to hire a rapper because they’d thought, “He’s gonna wind up gettin’ locked up or cause problems.” But I didn’t do none of that. I learned a craft and transformed and moved from one thing to another. That’s the main thing I do now: I come in and I do my job. I’m respectful and I show people that I can do it. And they’ll respond with, “Okay, wow. There’s nothing different.” It ain’t nothin’ different.

The bottom line, I think, is that I don’t have time to sit here and be remorseful. I’ve got plenty of time to cry, but I don’t have it right now. Right now is the time to go to war. That’s what I told the doctor when I found out what had happened to my body. “Okay. Now what’s next?”

That’s all I wanted to know: “What’s next?” dmmfoundation.org

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o begin understanding stem cells, we must go back to the beginning of a life. When our father’s sperm first mixed with our mother’s egg, we began as only a couple of cells. These cells rapidly divided as basic cells, but soon began changing into more specific cells—cells that would eventually become, a liver, a heart, a brain, muscles, eyes. Referred to as “pluripotent”, these early cells held endless potential. But once cells become what they were intended to be, they lose some or all of their potential to generate replacements for cells that may later be destroyed by injury or disease.

Embryonic stem cells are the ultimate in stem cells. What these genes become is determined by a person’s genetics, and their possibilities are essentially limitless. Though an understanding of these cells is highly complicated, stem cells remain the hottest topic in modern medicine today.

Recent discoveries have established that stem cells can be cultured ad infinitum to produce an endless supply. Better yet, these cells can be induced to become whatever type of cell a scientist wants them to be.

In theory, then, the potential for restoring diseased or damaged tissues would seem boundless. But in actuality, many stumbling blocks must be overcome in order to achieve such cell restoration, not the least of which is the fact that the best source for stem cells is aborted human fetuses. Though adult stem cells are present in our bodies all of the time, they don’t quite stack up to the potential of embryonic stem cells. Only further research will determine whether better sources for stem cells might exist. We’ll save some of these tricky issues for another issue.

For years now, Dr. Hans Keirstead and his colleagues at the University of California, Irvine (UCI) in conjunction with a company called Geron, have been developing techniques that induce stem cells to become oligodendrocytes, the cells that surround and support neurons.

Neurons are the active cells of the brain and spinal cord.

Oligodendrocytes support conduction of electrical impulses through neurons, acting not unlike insulation does along an electrical wire.

Spinal cord injury causes damage to neurons and oligodendrocytes. A completely destroyed neuron cannot be replaced, but partially-damaged neurons in the spinal cord might be able to regenerate if the destroyed oligodendrocytes can be restored.

After years of testing on laboratory rats—with promising results—the Food and Drug Administration has finally approved moving forward with human trials in the area of nerve regeneration by way of stem cells. These efforts in science have been sent back to the drawing board a few times, but the implication of even the slightest possible success in the face of an otherwise hopeless situation continues driving this project forward.

The first phase of the stem cell experimentation will involve testing a small number of subjects to see if the procedure is possible and safe. A few patients from several different centers throughout the United States, including some from UCI, will be involved in this phase.

Only people with spinal cord injuries in the middle of the back (not in the neck, as in the case of Christopher Reeve), will be potential candidates to participate in the experiment. Patients with such injuries retain the use of their arms and are only paralyzed from the waist down.

Upon agreeing to participate in the study, subjects will then begin receiving injections of stem cells that have been carefully prodded to become oligodendrocytes.

Evidence in rat-based studies suggests that these cells will go to the injured area of the subject’s spinal cord and will begin to replace destroyed oligodendrocytes.

Any damaged neurons still holding on by a thread may then have the potential of recovering and transmitting the necessary impulses to restore at least some function.

At present, there is no effective treatment for people completely paralyzed by injury to their spinal cords. In light of this fact, proving that stem cell therapy for spinal cord injury is possible and safe will be a quantum leap forward in medical science and human potential.

by Thomas Chappell, MD ABILITY 49

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pproximately 47 million Americans who are aged or who have disabilities are beneficiaries of the Medicare program.

Seven and a half million of these people are eligible to be recipients of Social Security Disability Insurance (SSDI). But thanks to a new competitive bidding program for suppliers, Medicare beneficiaries who use certain medical equipment and supplies may experience welcome changes in how such items can be accessed.

The new bidding program—called the Medicare Durable Medical Equipment, Prosthetics, Orthotics and Supplies Program (DMEPOS) —requires that suppliers of medical equipment such as walkers, oxygen tanks, and hospital beds submit bids for Medicare contracts. If a beneficiary’s supplier does not submit a winning bid, or decides not to participate in the program, the beneficiary will need to use a new supplier or pay the full cost of items covered by the program.

Its supporters are confident that DMEPOS will replace present Medicare costs with lower, more accurate prices. This will help both Medicare beneficiaries and the Medicare program save money by reducing Medicare’s costs and the expense of beneficiaries’ co-payments. It will also ensure access to quality medical equipment, supplies, and services. There may be some transitional challenges, however, as suppliers drop out of Medicare or fail to qualify as Medicare contract suppliers. At present, the Centers for Medicare and Medicaid Services (CMS) are working to make the transition as easy for beneficiaries as possible.

Some facts about the program: • The bidding process is expected to result in savings of 32% to the government and beneficiaries—that equates to more than $17 billion over a ten-year span. Additionally, the program is expected to reduce fraud and abuse, which will likely contribute to savings.

• DMEPOS requires that bids to provide designated medical equipment and supplies to Medicare beneficiaries be lower than

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current Medicare prices, which will consequently lower beneficiaries’ current co-payments. Suppliers seeking to participate in the program submitted bids to CMS by September 30, 2009. The winning contract suppliers will be revealed in September 2010.

• Suppliers must be accredited in meeting the DMEPOS program’s business and products quality standards. Each must also secure and maintain a surety bond in the amount of $50,000, which is designed to weed out fraudulent equipment suppliers.

• The first round of the competitive bidding program will begin in the following regions on January 1, 2011: Charlotte-GastoniaConcord (North Carolina and South Carolina), Cincinnati-Middletown (Ohio, Kentucky, and Indiana), Cleveland-Elyria-Mentor (Ohio), Dallas-Fort Worth-Arlington (Texas), Kansas City (Missouri and Kansas), Miami-Fort Lauderdale-Pompano Beach (Florida), Pittsburgh (Pennsylvania), Riverside-San BernardinoOntario (California).

• CMS expects a gradual expansion of the program until it covers the whole country by 2016.

• The program has supporters and detractors, but is moving forward as planned. A bill to repeal the program (H.R. 3790) has received strong bipartisan Congressional support. However, Senator Max Baucus, Chair of the powerful Senate Finance Committee and Senator Jay Rockefeller, Chair of the Subcommittee on Health Care, continue to support the competitive bidding process.

• Many durable medical equipment (DME) suppliers oppose the competitive bidding process, arguing that unqualified, financially unstable companies will drive fees down so far as to invite fraud.

However, a long history of Medicare fraud in this industry provides support for anti-fraud programs such as the DMEPOS Program. On June 16, 2010, federal authorities arrested 94 people in five states for taking part in Medicare scams, many of which involved false claims for DME. The amount at issue in the arrests was $251 million, while it is estimated that Medicare fraud costs taxpayers $60 billion to $90 billion each year.

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o learn more about the DMEPOS program and how it is likely to affect Medicare beneficiaries, ABILITY editor Lauren Becker interviewed David Sayen, Regional Administrator for Region IX of CMS. Sayen’s region includes Arizona, Hawaii, Nevada, California and the Pacific territories.

Lauren Becker: How much of these proposed savings do you expect will result from competitive bidding and cost reduction and how much from eliminating fraud?

David Sayen: Our savings projection of 32% represents the change from the existing prices to the new, competitively bid prices. We have already implemented accreditation, as well as bonding, for all suppliers. All of the suppliers have a bond posted, have been inspected, have submitted a bid, and have had their financials analyzed by us. So we know the people with whom we’re doing business are legitimate. We’re already seeing savings from fraud reduction that will be quantified as we get to the end of the first year.

Becker: How did you select the individual areas for the first round of the competitive bidding program?

Sayen: We began with a smaller pilot program to figure out our best approaches. Our upcoming phase, which has nine distinct areas, will tell us more about what works. Basically we chose areas that had a variety of configurations so we could learn what works best in different kinds of communities. For example, Miami is huge and has a significant fraud problem, so there’s not a real need for us to look at Los Angeles, because Miami and LA are too similar in that regard.

The nine regions we’re looking at give us a good representation of the country as a whole, and will give us what we need before we go to 91 areas in the next phase. We’re going to use this new process pretty much everywhere, so it really has to work.

Becker: And when did suppliers have to be compliant with the accreditation requirement?

Sayen: They had to be accredited and place their surety bonds by October of 2009. A substantial number of suppliers essentially disappeared in October 2009 and nobody really noticed.

Becker: What was the reason for those disappearances?

Sayen: Some suppliers had multiple businesses that they may have consolidated so they wouldn’t have to buy multiple bonds. But we know there were some questionable suppliers. So it’s time to clean house.

Back in 2001, the state of California told all of its DME suppliers, “you’re out, you have to reapply, everybody has to.” After that decision, the state saw a big reduction in the supplier population, Today the new Affordable Care Act has a similar requirement for other medical care providers, like doctors, who will have to reapply periodically. These shake-ups give us the opportunity to take a fresh look at the situation, and to run everyone against our database of bad apples.

Becker: When those big reductions happened, how did you help consumers whose suppliers had disappeared?

Sayen: We battened down the hatches with people ready at the phones at ABILITY 51

1-800-MEDICARE and at our regional offices. But we had very few inquiries, almost none, from people who had problems getting equipment. We were very pleased with the way the program rolled out.

Becker: So this new program not only saves money, it’s also something of a protection.

Sayen: It is. We’re really squeezing a lot of waste out of the system. The prices that we’ve negotiated through this bidding process represent a 32% savings over what the prices were before. And remember, that’s net of the 7% reduction in Medicare reimbursements for durable medical equipment last year.

In the end, we’re still paying more for these things than you might if you bought them on eBay. But there’s good reason for that. You really can’t go out and buy your own oxygen on eBay—you need someone to hook it up and to be there for services if it doesn’t work. There are people dependent upon these products and devices for their lives, for their health, for their ability to work, for their ability to talk. They’re essential.

Becker: Are you getting the word out? Do you have any kind of external relations campaign to inform beneficiaries of the changes? Are you doing community meetings?

Sayen: Absolutely. We have health insurance counseling and assistance programs in every county in the country.

This is a program we fought for in concert with the states, each of which sometimes has private money.

We’ve got volunteer Medicare beneficiaries who counsel people about health, and we have folks on the ground in all of the competitive bidding areas, doing town halls, holding meetings with suppliers, holding meetings with referral agents like physicians’ offices and hospitals.

Becker: You mentioned an 800 number. Aren’t a lot of people intimidated by that form of contact? It seems like some might avoid calling to get information they need.

Sayer: Most people are referred by health care providers for their medical equipment, so we’re doing a lot of work with referral agencies. See, you or I are not going to decide, “I feel like getting some oxygen today.” These situations come about after a hospital stay. Somebody at the hospital arranges for those things. But our operators are ready to help anyone who needs to find a supplier.

We’ve identified the beneficiaries, and we’re sending literature about the program to every beneficiary affected by the changes. We’re also going to every conference we can find—an amputee conference in Orange County, a national aging conference. A month ago, I was at the National Council on Aging conference in Chicago, talking about the program. We’re talking to hospitals, disability groups, the Alzheimer’s 52

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Association. We’ve brought in people from those groups and have shown them our materials. We’ve done focus groups.

Obviously there’s a big intersection between disability and aging. There are people who are on Medicare because of their disabilities and who, with age, will develop new challenges to their mobility. They will become users of these products.

Becker: What are some other items that are included in the bidding program?

Sayen: Oxygen-related items are a big area for us. Concentrators and liquid oxygen air tanks, standard power wheelchairs, scooters. We don’t provide the scooters you see people drive around in the streets. Medicare only pays for power mobility devices intended for use in the home. We’re selling medical devices, not transportation, so we restricted the complex rehabilitative wheelchair more narrowly.

We also deal with mail-order diabetic supplies, certain wheelchairs, CPAP (continuous positive airway pressure) respiratory assistance devices, hospital beds, and walkers.

Becker: Tell me a bit more about the efforts to make sure people know about these changes.

Sayen: Sure. One big step we’re taking is to send a mailer to every affected beneficiary who has a record of using durable medical equipment. It’s an expensive effort, but we think it’s the right thing to do. That’s the center of the strategy.

We also began speaking at conferences this summer, going into each of the competitive bidding areas to get on the ground and meet with beneficiary groups, other partners, referral agencies, medical associations—everybody we can find to whom we can talk and give some information about this. We’ll continue these efforts in the fall, as we get ready to go live. At that time, we’ll also be able to go in and meet with the successful suppliers and help them be as ready as possible.

A legitimate concern some people have is that those companies who aren’t successful may go out of business. We don’t want to put people out of business. So we’re telling people in the mailing and in our outreach to contact their suppliers and ask if they are going to continue to participate in the future. If their supplier says no, we’ll hook them up with someone else.

And, of course, we’ll do some paid media, radio. We’ll certainly do some ethnic media. We have a large group of people who exclusively do active media work. In all of our offices, we have Spanish and Asian language speakers who do a lot of radio. We find that’s really useful in those communities.

Becker: What if the beneficiary still has problems getting his supplies?

Sayen: That’s where our ombudsmen come into play. By putting an ombudsman in each of the competitive bidding areas, we’re providing an advocate for beneficiaries. We are working so that the beneficiary has a positive experience and a seamless transition. We want to achieve savings and provide a better customer experience than the one we have today.

There is still some opposition, but we’ve been down this road before. There are people in the industry who aren’t happy about any changes because those changes mean that not as much money will be made. For example, at present, the amount Medicare pays for a rental on an oxygen concentrator is $190, which is rounded to $200.

That means Medicare is paying $160 and the beneficiary is paying $40.

Many of our friends are in need of these devices, so the new amount across the board is $140. That means there’s a $46 savings for Medicare and $11 savings for the beneficiaries. The point is that there are not just savings for the government and taxpayer. There are savings for the beneficiaries as well.

Sayen: Yes. Medicare was designed to have co-insurance so that people would be conscious of costs. But the widespread use of Medigap insurance among more affluent beneficiaries makes people indifferent to prices, so everybody tends to look at a medical service and presume the more expensive provider is better—just as people might look at two automobiles and choose the more expensive one. But our government needs to step up and evaluate these purchases. Money can be saved.

Becker: What kind of opposition, if any, have you faced with regard to the program?

Sayen: One of the common concerns is that some of these suppliers are small businesses and, consequently, are connected to several jobs. So you’ve got to balance the jobs against the savings of the taxpayers. We are committed to taking everyone’s issues into consideration. Ultimately, we want the program to save money for the government and for beneficiaries, to eliminate fraud, and to do everything in our power to make this an easy and positive transition. medicare.gov

Becker: So the beneficiary has a vested interest in keeping costs down.

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In the first part of this two-part series, ABILITY Magazine examined a unique collaboration among Anthem Blue Cross, California’s hospital associations, and the National Health Foundation (NHF). This alliance, called the Patient Safety First partnership, involves a three-year effort in the following areas: 1. Perinatal Care: Reduction of elective deliveries prior to 39 weeks 2. Sepsis: Reduction of incidence and morbidity 3. Hospital-Acquired Infections in the Intensive Care Unit (ICU): Reduction of instances of ventilator-associated pneumonia (VAP), central line bloodstream infections (CLBSI), and catheterassociated urinary tract infections (CAUTI).

Our first article focused on Anthem Blue Cross, its role in forming this unique partnership, and its commitment to saving lives while reducing health care costs for Californians.

In part two, ABILITY’s Lauren Becker interviews the other integral players in this collaboration: Art Sponseller, President and CEO of the Hospital Council of Northern and Central California; Gene Grigsby, President of NHF; Leslie Kowalewski, Associate State Director, California Chapter and Director, Big 5 State Prematurity Initiatives for March of Dimes (MOD); and Joanna Horsfall, an independent consultant tasked by Anthem with providing direction, oversight and coordination to the effort.

This article examines the contributions of each of these individuals in forwarding the goals of the initiative. It also investigates the coordination of efforts toward the project’s success and its implications on the future.

THE CALIFORNIA HOSPITAL ASSOCIATIONS: PUTTING PATIENTS FIRST

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alifornia’s hospital associations include the Hospital Council of Northern and Central California, the Hospital Association of San Diego and Imperial Counties, and the Hospital Association of Southern California. The not-for-profit regional trade associations represent 95% of all hospitals in the state. Their mission is to serve the political, economic, informational and educational needs of their member hospitals, and to improve the quality and accessibility of health care services in an effort to create healthier communities.

The Hospital Council of Northern and Central California is the lead organization for the initiative’s three regional associations. In the following interview, Art Sponseller, President and CEO of the Council, describes the initiative from the perspective of hospital associations, and discusses their roles and expectations.

Lauren Becker: What prompted this collaboration?

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Art Sponseller: In 2005, the Hospital Council, with funding from the Gordon and Betty Moore Foundation, and clinical leadership from Dr. Bruce Spurlock of Convergence Health Consulting, established the first large scale, hospital-based patient safety collaborative in the San Francisco Bay Area. Our initial focus was on the 100,000 Lives Campaign, a nationwide initiative to significantly reduce morbidity and mortality in American health care.

Subsequently, a similar effort was established in Southern California. From day one, we had a vision that every hospital in California could participate in this initiative, and our real challenge was a matter of funding.

In 2008, we began discussions with Anthem Blue Cross about a partnership in which they would provide funding and public outreach to expand our collaborative activities so that our vision of all California hospitals participating could be achieved. That vision was realized in Patient Safety First…a California Partnership for Health, which was launched in January of 2010.

Blue Cross envisioned that the state’s largest health insurer and the hospitals of California could come together in a unique and unprecedented way to save lives, and this led to the creation of the collaborative.

Becker: Why did the hospital associations decide to collaborate with these particular partners?

Sponseller: I know some of your readers are asking this question with skepticism. Hospitals and health plans are strange bedfellows, sure, but they really don’t need to be that way. In essence, we share a common hope and vision: we both want to save lives. So, realistically, this is a natural fit. Getting this initiative started under this collaborative model is the right thing at the right time.

Our partnership builds upon established peer-to-peer learning networks like the Bay Area Patient Safety Collaborative (BEACON) and the Southern California Patient Safety Collaborative. It also compliments the work of the March of Dimes, zeroing in on the area of perinatal care, and on issues of prematurity and education about why the last weeks of pregnancy can be critical to the health of the mother and baby.

Becker: Why did you feel this union presented a good opportunity for the hospitals?

Sponseller: We have found great success in the collaborative model. Our BEACON Collaborative in the Bay Area has had great results, with tremendous participation and enthusiasm. BEACON has accelerated the adoption of evidence-based and innovative practices, and has created a learning network among organizations

who share a commitment to building healthier communities. The collaborative has also educated organizations about the importance of the initiative’s work.

Through quarter four of 2009, an estimated 1,593 lives have been saved: 375 from ventilator-associated pneumonia (VAP), 219 from central line blood stream infections (CLBSI), and 999 from sepsis. There have been 2,388 fewer hospital acquired infections: 941 from VAP and 1222 from CLBSI, and 463 fewer patients acquired pressure ulcers while hospitalized. What we’re doing is important work that ultimately translates to people being able to be up and walking around, people who three years ago would have died.

to see greater results with unilateral focus.

Becker: What is the relationship between the hospital associations and Anthem Blue Cross?

Sponseller: We’re committed to a collaborative working relationship to benefit the citizens and patients of California. This has brought us together in a productive relationship in which we share a common mission, goals, and objective, and has led to the development of a very exciting partnership.

Becker: Another partner in the initiative is the NHF. How do you interact with them?

A number of hospitals in inland counties within our membership had previously expressed interest in creating similar collaborations in their areas. This project was a natural vehicle to use to facilitate this important work.

Sponseller: The National Health Foundation helps us to independently document our progress. We are very fortunate to have their expertise in data collection and their experience in evaluating large-scale projects.

Becker: What is the role of the hospital associations in the partnership?

Becker: Is there any one entity that is taking the lead on coordinating these overall efforts?

Sponseller: Our role as a member association is to convene our hospitals to discuss ways of improving patient safety in the areas defined by this initiative. We bring together hospitals in regions throughout Northern California to share best practices and to focus on measures that will assure improvements in areas targeted by the initiative. We provide a neutral ground on which hospitals can discuss their concerns and questions openly, without divulging proprietary details of their operations.

The best practices highlighted by member hospitals can then be used by other hospitals. Our motto in these collaboratives is, “steal shamelessly.” It really works!

Sponseller: A leadership council, made up of the president and senior executives of all five organizations, meets on a regular basis to ensure that we are fulfilling our mission and meeting strategic goals. We decided from the beginning of this effort that we needed to bring the principal elements of this collaborative together through detailed planning and communication. There have been numerous in-person meetings, conference calls and emails sharing the evolution of the product. Regular updates are also provided to participating hospitals.

Becker: Did you seek approval from your membership prior to engaging in the collaboration? What was the general feeling toward the effort?

Sponseller: We always brief our hospital leadership teams about initiatives such as this one to get their counsel and support. Nearly all of our hospitals have patient safety measures underway to minimize errors. We were somewhat concerned about introducing another patient safety initiative because hospitals were already engaged in their own processes. The hospitals were particularly interested in this opportunity because the participation of the largest health plan in California created a stronger partnership that was focused on just three main initiatives.

Becker: Did you experience any pushback from the hospitals?

Sponseller: There was some concern that this initiative would simply create extra work for hospitals. However, it turned out that most of the hospitals were already engaged in patient safety efforts in the three areas of focus in the initiative. Pulling this effort together with other hospitals in various regions provided opportunities

Becker: Tell me about the areas of focus for the initiative. Why are these the priorities of the hospitals that the associations represent?

Sponseller: As you know, the initial focus for Patient Safety First…A California Partnership for Health comes down to three primary areas: perinatal care, sepsis, and hospital-acquired infections in the ICU. We wanted to focus on issues on which hospitals were already working—we wanted to help them accelerate change and learn stronger reliability strategies.

In addition, these three issues have had huge impacts on the lives of our patients in our communities. Hospitalacquired infections must be reported to the California Department of Public Health, and have high visibility. If we can help more of our hospitals get to the “zero zone”, eliminating these infections, it makes sense to focus there. The perinatal initiative makes sense, too, as there are multiple entities focused on it today, including the Joint Commission (TJC), the Institute for Healthcare Improvement (IHI), and the California Hospital Assessment and Reporting Taskforce (CHART).

The maternal mortality rate in California is higher than the national average, and many practices, such as ABILITY 55

elective deliveries prior to 39 weeks gestational age, are based on convenience and on changes in societal demands, rather than on evidence-based practice. In fact, elective delivery, whether by induction or by Csection, should be undertaken only after 39 weeks of gestation. The American College of Obstetricians and Gynecologists, the California Quality Maternal Care Coalition, and the March of Dimes have been working together on a toolkit that will help spur this change.

lives and improving quality of care in a cost-effective manner. These are goals our partners share, and this mutual alignment creates a unique opportunity to positively impact the lives of the patients we all serve.

“Patient Safety First” means just that. They are our customers and we have found a better way to safeguard them while they are in our care.

Becker: Where do you foresee this effort moving in the future?

Becker: What models are you using for this project?

Sponseller: Models for this project have a different presentation in each regional association. In San Diego, the hospitals have a long history of working on projects directed towards standardization of policies and processes, so they are taking a topic-by-topic approach to determining strategies to reach their objectives.

The Southern California Region has two regional collaboratives with a stable hospital population that are adding and refining the initiatives to include in their current programming. In the Hospital Council Region, we are soliciting and encouraging hospitals to participate. We are engaging hospitals that have not previously had this level of engagement offered to them. The idea here is to replicate the BEACON Bay Area collaborative, which involves in-person meetings, as well as web-based education and presentations during the intervening months.

Becker: What are the expected outcomes for the hospitals?

Sponseller: We hope to reduce mortality from sepsis by 25% statewide over three years. We also want to eliminate hospital-acquired infections, with a target of zero for central line blood stream infections, ventilator-associated pneumonia, and catheter-associated urinary tract infections.

Becker: Have you encountered any challenges with this effort? If so, how have you addressed them?

Sponseller: In the council region, the biggest challenge is the recruitment process. This is not new, as we experienced it previously with the BEACON project. There are many competing priorities in hospitals, as well as numerous opportunities to engage in quality and patient safety efforts through entities including physicians’ professional associations, the IHI, and others. With this effort, we are trying to emphasize the importance of regional collaboration and its positive impact on accelerating change.

Becker: What is most exciting to you about the initiative?

Sponseller: With health care reform having arrived on the scene over these past months, we see this initiative as a prime opportunity to try a different approach to solving challenging problems in patient safety. We’ve joined in this new partnership with the aim of saving 56

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Our hope is that the first three initiatives will ignite a firestorm that will burn for a long time among the partnership. We share common goals. Zero tolerance for error has been achieved by other industries, so why can’t health care be held to the same standard? With the strength, dedication, and focus of this new partnership, we can do better and sustain this improvement our over time. The success of these initiatives will naturally lead us to other areas of focus that need attention.

THE NATIONAL HEALTH FOUNDATION: KEEPING AN EYE ON THE DASHBOARD A Los Angeles-based non-profit organization, the National Health Foundation (NHF) is dedicated to improving and enhancing the health care of the underserved by developing and supporting innovative programs that may become independently viable, provide systemic solutions to gaps in health care access and delivery, and hold the potential to be replicated nationwide. As its president, Gene Grigsby represents the NHF in its partnership efforts.

Lauren Becker: What is the role of the NHF within this project?

Gene Grigsby: We serve something of a dual role. One of our key responsibilities is that we house the database for all of the participating hospitals statewide. We enter the information relative to the target areas on which we’re focusing, and then we prepare reports that are made available to each hospital.

Becker: And where are you in that process?

Grigsby: We have just created the connecting website for the database and will be holding webinars very soon for all the participating hospitals. We will also begin entering data.

Becker: So you’ve created the database that you’ll give to each hospital and they’ll enter their own data?

Grigsby: That’s correct. And this is a role that we played previously in the Patient Safety Collaborative in Southern California. We have the prototype of a database and a website that will allow individual hospitals access on a very secure web system, so that we can allow hospitals to look at their data and then contribute data for the other hospitals.

Becker: And that’s helping with this initiative?

Grigsby: We’re just starting the effort for this initiative, and we’re using the prototype for Southern California.

We have been doing patient safety collaboratives in Southern California for the past two years. So we have expanded the project statewide and expanded the focus, with perinatal as one of the targets for safety improvement. That was not part of the original project we had.

Becker: And have there been any kind of lessons learned that have helped in streamlining this process or have made it easier for you?

Grigsby: The biggest lessons were not necessarily learned, but were certainly validations of the notion that when hospitals collaborate and focus on a problem area, they experience measurable improvement. So the whole purpose here is to identify problems that particular hospitals may be having with issues of sepsis or central line blood stream infections or ventilator-associated pneumonia, and get them working with hospitals that have overcome problems in those areas. Then, through a peer-to-peer learning process, you can get hospitals that are having difficulty overcoming these problems to make progress rather quickly.

Becker: Are you having any issues with hospitals being unwilling to share their information with others?

Grigsby: No, because once they see the value of the learning process and the safety improvement that occurs, they become true believers. It is fair to say that every hospital wants to be a safe hospital, but not every hospital understands the variation in safety data that exists across the state. With shared data, you begin to see that, even though you believe you are doing everything possible to deal with safety issues in your hospital, there are others that have better safety track records than you do. And that gets your attention.

Becker: That’s great. So, you’re not having any issues with competition?

Grigsby: This is not about competition. This is really about how can you provide the safest environment for patients. The emerging focus on patient safety and transparency is on changing the name of the game in terms of how hospitals function.

Becker: You’ve seen that happen over just the past couple of years?

Grigsby: Yes. That’s why we’re confident that we can, on a statewide basis now, move the needle even further and more quickly.

with the understanding that if we can show measurable improvement in the first year, based upon goals that we are establishing, then Anthem will add an additional year of funding at the end of the three years. This will allow the project to continually identify patient safety issues every year. If we begin to address the issues systematically and show substantial improvement, our partner Anthem is quite willing to continue to work with us.

Becker: You mentioned a second role you play. Tell me about that.

Grigsby: The second role we play, in addition to the data-housing role, is that we serve as sort of the statewide coordinator of management information for Anthem—so we produce the quarterly reports based upon the fiscal overview of the project, including tracking of expenses. We’ve also created a dashboard that shows how well the project is moving across all of its phases, and how we’re doing in terms of achieving the goals and objectives that the project has set up.

Becker: What exactly is a dashboard?

Grigsby: It’s where we list all of the activities in whichwe’re involved, and includes a monthly calendar. The dashboard features a green bar that indicates we’re on track, a blue bar that indicates we’ve completed that task, a yellow bar that indicates this area needs attention because it’s not moving like we think it should be, and then there’s a red bar that says we’re behind schedule and may need help.

Becker: And I’m sure you don’t have many of those red bars.

Grigsby: So far, we have one, but we just produced the dashboard in earnest for this quarter, so now we’ll be doing it on a month-by-month basis, and reporting it to the overall management team quarterly.

Becker: So for the most part you’re right on schedule and feel like you can complete what you said you’d do on time?

Grigsby: Yes. But what people don’t realize is that this is a big project. The state of California is no small entity, so it’s taken a good three months for us to get all the startup and players in place. Thankfully, the project is really unfolding the way we envisioned. We have about six months in the first year to try to hit our mark, which is going to be a little bit challenging, but the dashboard lets us know where we need to focus our energies and our efforts.

Becker: And what are you seeing as the biggest challenge?

The size of the state?

Becker: How long do you foresee this project taking?

Grigsby: We built this on a three-year time schedule,

Grigsby: Look at it by regions. In Southern California we have had a number of hospitals that have been doing ABILITY 57

this sort of thing for the last two years, so we don’t have a lot of organizational challenges in terms of making hospitals aware of patient safety collaboratives. San Diego has never done this before, so it’s been somewhat of an educational process for them, introducing the patient safety collaborative and to getting their hospitals to understand why it’s important to work together on these initiatives. So San Diego has been a little bit slower to roll out of the box.

Up in Northern California, they’re dealing with the challenge of being one of the largest rural areas. They have hospitals that have been totally disconnected from any sort of collaborative participation, so they really have a challenge in terms of convincing these hospitals, which are largely isolated from other hospitals and are also having financial challenges, that this kind of collaborative is key to success. Patient safety, while important, may not necessarily have the highest priority for these rural hospitals.

Becker: How is the coordination of efforts going?

Grigsby: We have teams. We have our public relations team, our data outcomes team, our return-on-investment team, each of which meets regularly. We also have our leadership group, which includes the presidents of each of the associations, myself and a representative from Anthem. That group meets quarterly to review the dashboard. We also have bi-monthly phone calls among the hospital leadership teams. There’s lots of coordination that’s going on.

That sort of communication is good, but you also have to realize that you’re dealing with a bunch of partners who have never partnered before, so sometimes you have to learn to speak each other’s language. You have to learn each other’s communication and management styles, and that’s been a part of the startup learning process as this project moves forward.

Becker: What do you find most exciting about the partnership?

Grigsby: This is the largest partnership involving a health plan and hospitals that exists in any state in the nation at the moment. So I think the most exciting part will be when we are actually able to demonstrate a significant improvement in patient safety in those target areas. That’ll be a huge statement.

Becker: Do you foresee using this as a model in other states?

Grigsby: Clearly if this is successful, as we anticipate it will be, Anthem would like to see how it can capture value added here, and in other regions in which they work.

As the reports and publicity about the success of this project get out, it is not inconceivable that other health plans in other states may want to emulate this model.

MARCH OF DIMES: WHAT A DIFFERENCE A WEEK MAKES The March of Dimes is the leading nonprofit organization for pregnancy and baby health. Leslie Kowalewski works diligently combating the issue of prematurity.

Specifically, she connects multiple partners and stakeholders in California, including clinicians, public health departments, hospitals and the State of California Department of Health, in order to eliminate non-medically indicated deliveries before 39 weeks gestational age.

Lauren Becker: How did March of Dimes become involved in the initiative?

Leslie Kowalewski: March of Dimes has partnered with the California Maternal Quality Care Collaborative and the California Department of Public Health to address early elective deliveries by developing a toolkit that supports hospitals in changing policies and practices to eliminate non-medically indicated deliveries before 39 weeks of gestation. We are working with the Patient Safety First collaborative on rolling out the toolkit in California and across the country.

Becker: What are some of the problems commonly associated with early delivery?

Kowalewski: Babies born early are more likely to have feeding, breathing and sleeping difficulties and have more learning and behavior problems in childhood than babies who are born at 40 weeks. In the last six weeks of pregnancy, the size of a baby’s brain almost doubles.

Many pregnant women do not know these facts: a survey of insured women who recently gave birth found that only 25.2% of women defined “full-term” as 39-40 weeks. More importantly, 92.4% of women believed that giving birth before 39 weeks was safe.

Through our outreach and education, March of Dimes is hoping to change these misconceptions. March of Dimes has also been working to educate women about the potential negative outcomes of early elective deliveries and the critical fetal development that occurs during the last weeks of pregnancy.

Becker: What are you doing at present with regard to the initiative?

Kowalewski: The Elimination of Non-Medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age Toolkit will be posted on the national March of Dimes website, in hopes that it will be used by all hospitals.

The March of Dimes California Chapter will pilot and evaluate the toolkit in eight hospitals from August 2010December 2011.

Becker: What do you hope will result from this work?

By eliminating non-medically indicated deliveries

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before 39 weeks gestation, we hope to reduce late preterm birth rates. We want to educate consumers about the importance of a full forty-week pregnancy by showing that every day counts.

ANTHEM BLUE CROSS: PROVIDING VISION AND OVERSIGHT

skilled in working collaboratively across organizational barriers, and her influence is very clear in this partnership. But each one of the leaders is exceptional in his or her ability to think strategically, work collaboratively, and operate in ways that fall outside of a comfort zone.

Becker: What is the significance of this project to Anthem?

Joanna Horsfall is an independent consultant working with Anthem Blue Cross on the initiative. She specializes in developing and implementing strategies to transform the delivery, financing and management of health care.

Kowalewski: It represents an opportunity to play an important role in connecting parties to drive change that will eliminate avoidable medical errors, improve care, reduce costs, and save lives.

Lauren Becker: What part do you play in the Patient Safety First initiative?

My personal opinion is that this work is of great importance because the challenges we face represent the challenges of the United States health care system overall.

Recognizing and overcoming obstacles to working across organizational boundaries is in the interest of the consumer. One of the biggest obstacles these days is trust. I am extremely impressed with the progress that has been made by our leaders to build trust and to work together to do the right thing for the people of California. I hope that this work will provide real, tangible hope to other organizations that endeavor to work together to overcome obstacles to improvements in health care cost and quality.

Joanna Horsfall: I have been supporting Anthem Blue Cross President Leslie Margolin in bringing the idea of a cross-industry collaborative to drive patient safety to reality. Over the past year, I have supported Leslie in analyzing and articulating the potential value of the patient safety collaborative, in coordinating its launch, and in supporting the leaders of the partnership in the overall work of the Patient Safety First program.

Becker: What kind of work do you do on a day-to-day basis?

Horsfall: One of the hospital leaders described my role as being “the glue”. Specifically, I help the key leaders of the Patient Safety First initiative: Leslie Margolin, Art Sponseller, Jim Barber, Steve Escoboza and Gene Grigsby. I work with them to define the mission and goals of the partnership, to establish a way of working that balances the independence of each partner with the need to work together to deliver results, and to explore the contributions that each partner can make in shaping the sort of collaborative work they can do together.

I also work with the National Health Foundation to set up a day-to-day program management capability and to maintain a focus on the good of the whole. I help the leadership group identify and resolve substantive issues that could get in the way of its progress.

NEW CHALLENGES, CONTINUED HOPE Since this interview, Leslie Margolin has resigned her position as Anthem Blue Cross President. Margolin says she is now training her focus on developing a coalition called Transforming Healthcare, which aims to cut health care costs in California.

A spokesperson for WellPoint, Anthem’s parent company, acknowledged Margolin’s commitment to Patient Safety First, stating, “During her tenure at Anthem Blue Cross, Ms. Margolin played an integral role in collaborating with hospitals and providers across the state and has been a champion of innovative initiatives that improve patient safety.”

Horsfall: The challenges we face in pulling this effort together are typical of complex organizations in which there are no direct lines of authority. Each of the three hospital associations—Anthem Blue Cross, the National Health Foundation and the March of Dimes—is an independent entity with its own priorities. Day-to-day priorities create a natural, centrifugal force that can pull each organization away from the center.

Mark Morgan, Anthem’s vice president of small group sales, has assumed Margolin’s role at Anthem on an interim basis. There has been no indication that Anthem will change course with regard to the initiative, and its partners remain committed to their objective of keeping Californians healthy. Art Sponseller, spokesperson for the hospital associations, said: “Our partnership is with Anthem Blue Cross. We thank Leslie for her leadership and commitment to Patient Safety First, and we wish her well in her future endeavors. We do not anticipate any program changes as a result of Leslie leaving and we look forward to the continued success and advancement of these very important patient safety initiatives.”

The keys to maintaining momentum are the commitment and energy of the leaders as they stay focused on the goal. Leslie Margolin is extremely experienced and

anthem.com nhfca.org hospitalcouncil.net

Becker: Have you encountered any challenges in your work with the partnership?

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Photo by: Nancy Villere - CrushPhotoStudios.com

I

t began as a straightforward History Day project for his son Eric’s high school class. Five years later, the It’s Our Story oral history series continues to consume much of Scott Cooper’s focus, time and resources.

Its scope is as wide as its mission is simple: to document, package and promote the too-often unheard voices of people with disabilities across America.

A lanky, good-natured photographer who says he enjoys the “relaxed, country life” of Northern California, Cooper admits he hadn’t done much traveling before the It’s Our Story project began to unfold in June of 2005. But when his son Eric, who has muscular dystrophy, expressed interest in researching disability advocate Ed Roberts for a class project, Cooper jumped at the chance to help.

“I was a 24-7 family kind of guy,” Cooper said. “I figured a project like this would be a good way for us to spend some time together. So while Eric was going to summer school, I started researching and making some phone calls.”

It wasn’t long before father and son had secured faceto-face meetings with Fred Fey and Elmer Bartell, two notable forces in the history of disability rights.

According to Cooper, those conversations prompted something of a shift in his son’s self-perception. Suddenly, Eric’s future didn’t seem so limited. His life didn’t seem so short.

“As a father, I’m not as interested in telling my kid what to do as I am in showing him how it can be done,” Cooper said. “I wanted to introduce my son to success. Watching Eric move from apprehension about his future to excitement about his future—that was pretty powerful.”

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And so the project expanded. Over the span of a month, Cooper and son criss-crossed the country, conducting more than thirty interviews and visiting Warm Springs, GA, where they toured a treatment center begun by President Franklin Roosevelt for polio rehabilitation. It was there that Cooper says he witnessed concrete and unforgettable evidence of his son’s newfound sense of empowerment.

“In the past, Eric had always been against the idea of using an electric cart,” Cooper remembers. “He was more, ‘I’m going to stagger and waddle my way through life.’ But at Warm Springs, he sat in an electric cart at five p.m. and had worn out the battery by eleven. Suddenly he wanted to get one. Something was changing.”

Eventually the It’s Our Story experiment was forced to adapt to its own set of changes. As Eric departed to pursue a degree in urban planning at UC Berkeley, his father’s personal investment in the project only intensified. Today the It’s Our Story endeavor boasts over 1,300 hours of conversation about disability life and has collected interviews in more than a hundred cities from Boston to San Francisco. Lacking the budget to pay a film crew or to book hotel rooms, Cooper traversed the country mostly alone, sleeping in his conversion van and seeking out the stories of parents, children, advocates, wounded military veterans—altogether a mere fraction of the 54 million Americans who today live with a disability.

“It cost me a marriage,” Cooper says of the mammoth expedition he’s now working to promote at media events and disability conferences. “It cost me a lot. But the fact is that people in the disability community don’t often

have the golden years to write memoirs. Advocates from the ‘50s and ‘60s are dying today, and it was important to me to get these voices documented because people with disabilities have the power to teach humanity how to be more human.”

During interview number 154, with disability scholar Victor Pineda, Cooper forged a relationship that took his homespun project to an entirely new level of potential.

Pineda, then a graduate student at UC Berkeley, had won a major national research grant and was at work founding Berkeley’s Disability Media Center when his and Cooper’s paths collided. Almost immediately the two men recognized they held a common goal.

“We totally hit it off,” Pineda remembers. “Through the Media Center, I had been working to create opportunities for people with disabilities: facilitating professional development and training, helping them gain experience in media and filmmaking. After talking with Scott, I realized he was on to something big. I said, ‘We need to join forces. We can really scale up this content’.”

Today, under the banner of his non-profit organization, The Victor Pineda Foundation, Pineda works closely with Cooper in shaping It’s Our Story into an educational resource—an interactive teaching tool through which educators, creative artists, and young people can learn and converse about the experiences of those with disabilities. In collaboration with a small team of interns and editors (nearly all of whom themselves have disabilities), Cooper and Pineda have crafted an array of multimedia presentations designed to make learning about this largely unexplored minority group into an engaging, user-driven experience. Pineda says the project will even include a free, online video-editing program so that visitors can add their own stories to the mix.

influence. When Victor rolls into a room, people see him on his respirator and wonder, ‘Oh my God! Is this guy going to die?’ But then he just takes over.”

Though Cooper is the first to admit that, contrasted against Pineda, he might seem the more unexpected conduit for examining disability experience in America, he maintains this sort of snap judgment is precisely what It’s Our Story is designed to dismantle. Like millions of Americans, Cooper lives with what he calls “the invisible disabilities” of dyslexia and Attention Deficit Hyperactivity Disorder (ADHD)—challenges that went undiagnosed for most of his life.

“When I was growing up in the early ‘70s, special education was not a reality,” Cooper said. “I just knew I was different from the time I was five or six years old.

I felt it. When you have a hidden disability, you learn it’s best to act dumb or to say nothing, so no one else is picking you out as the alien. But I always felt like the alien.”

It was his daily experiences with social alienation and academic frustration, Cooper recalls, which ultimately directed him toward a life in the creative arts. Though he never graduated high school, Cooper took multiple classes to learn to write while in his twenties, and managed to support himself with work as a grip on film sets and as a photographer. Today he attributes the impressive scope and depth of the It’s Our Story project to the “obsessive drive” caused by his ADHD. “My disability is not disabling,” Cooper said. “It’s actually the source of all of my creative juice. When I grab onto a subject, I put the blinders on and I go deep. I treasure what makes me different, because this archive never would’ve gotten done if not for my disability.”

“Everyone knows about Martin Luther King and Harvey Milk,” Pineda said, “but few know about Ed Roberts or Justin Dart or the California sit-ins that created opportunities and access for people with disabilities. If we can get these stories into the public schools, into the curriculum, we can get people more aware and more involved.

We can change perceptions. These are the hidden narratives of our history.”

At the heart of the It’s Our Story enterprise, Cooper says, is a powerful desire to bring others to a similar awareness of their own potential. Under the guidance of Cooper and Pineda, the archive aims to be all-inclusive and informative, reframing notions about people with disabilities for anyone who sees them as a group to be feared, avoided or pitied, or for any young person who—as Eric did, years ago—might privately doubt his own potential for achievement.

Pineda, who is currently completing his PhD at UCLA’s School of Public Affairs, is no stranger to that history.

At 31 years old, he weighs about ninety pounds and uses a formidable motorized chair to navigate his apartment, international airports, and the halls of the United Nations as an avid promoter of disability rights. Cooper notes that Pineda’s high levels of achievement and selfconfidence have made him an invaluable advocate for the It’s Our Story project.

“There’s often a sense within the disability community,” Cooper said, “that, ‘if you don’t got it, you don’t get it’.

So it’s our challenge, our responsibility, to communicate the experience of living with a disability. Because once people start to ‘get it’, I think we’ll begin to see big advancements in employment, education, socialization.

But until we can communicate who we are, the stigmas that follow us aren’t going to go anywhere.”

“Disability still petrifies so much of the mainstream,” Cooper said, “and that’s what we’re really hoping to

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