ABILITY Magazine - Kathy Ireland Issue by ABILITY Magazine

MAGAZINE

VOLUME 2011

KATHY IRELAND

FEB/MAR

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 KATHY IRELAND FEB/MAR 2011

70989 35509

$4.99 ISSUE 02-11

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M ANAGING E DITOR Gillian Friedman, MD

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

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

E DITORS

Dahvi Fischer Renne Gardner Regina Hall Molly Mackin Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

ASHLEY’S COLUMN — Back in the Saddle

SEAN FORBES— Can You Hear Me Now?

GUNSHOT WOUNDS — Bullet Points

ABILITY BEST PRACTICES AWARD — Sprint

BLIND FISHING BOAT — New Fishermen Take the Bait

YAHOO — Expanding the Digital Highway

REHABILITATION — Hitting New Strides

TERRI CHENEY — A Plea for Innocence

KATHY IRELAND — A Model Businesswoman

HEART TRANSPLANT — An Uncommon Cardiac Connection

LEIGH BRILL — Excerpt From A Dog Named Slugger

CROSSWORD PUZZLE

EVENTS & CONFERENCES

SUBSCRIPTION

Paralympic Games Beijing

H EALTH E DITORS

Moses deGraft-Johnson, MD Larry Goldstein, MD

C ONTRIBUTING W RITERS Sean Forbes p. 10

Terri Cheney p. 38

ADVERTISING

Stan Hoskins Mary Shafizadeh

G RAPHIC A RT / I LLUSTRATION

Scott Johnson Melissa Murphy - Medical Illustration Anna Blagovidova

P HOTOGRAPHY

Nancy Villere— CrushPhotoStudios.com

T RANSCRIPTIONIST Rehabilitation p. 32

Sandy Grabowski

DIRECTOR OF BUSINESS AFFAIRS Ryan Brown, JD

MARKETING/PROMOTIONS Stan Hoskins Andrew Spielberg Ashley Fiolek p. 8

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HUMOR — Love Hurts

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Music Within

C O N T E N T S

Kathy Ireland interview p. 42

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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

HUMOR THERAPY The other day I stopped by to see my ex-wife. I brought her some flowers: the little ones with the yellow petals and the beige arsenic powder speckled on them. When I got to her place, she was standing there holding her cat. My God, did that thing smell. She was hissing at me, her hair was all natty and she had fleas. Honestly, I don’t how the cat could stand being around her. Not that I was husband of the year. I would always forget little things like taking out the trash, putting the toilet seat up or down, birthdays and anniversaries, coming home at night. I think if I ever get married again I’ll wed on Christmas Day. Whenever my wife says I forgot our anniversary I’ll say, “No, I didn’t! Remember that present you opened this morning?” If I can find a girl who was born on December 25th, I’ll be covered on all fronts.

inding that right somebody is hard. Some would say it’s impossible. I’m with that “some.” The two sexes are just so different. For instance, whenever I wore one of my brother’s shirts, he never cared. But, boy, you’d think the world were ending if my sister caught me wearing one of her skirts. Even the charges on our credit cards reveal a world of difference. An itemized bill for a girl might list shoes, spas, and hair stylists. A man’s? Hooters, Roid’s sports bar and Home Depot. At least women have something to show for their purchases. All men have are some hangovers and a monkey wrench. Even with all our differences, for whatever reason, men and women tend to seek each other out. We go out, banter, small talk, tease, flirt, kiss and fight. Our hope is to find that special someone with whom to spend a lifetime. Or at least a couple of nights. I’ve been married twice. The first time was when I was six years old. It only lasted a month. It was a bitter break up. My little five-year-old ex got the house in the tree, full custody of my stuffed animals and half my toys. Eventually, the tree house was struck by lightning and the stuffed animals found their way to Goodwill. I still keep in touch with the puffy panda. I vowed I’d never get married again. I was wrong. Time, unfortunately, heals all wounds. My second marriage lasted seven years. I guess you could say I lived through The Great Depression. The day after the divorce was final, my wife and I became friends. I know I had faults. From the beginning of the marriage I started sleeping around: on the couch, in the garage, in the doghouse. It just depended how pissed off she was.

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And men, here’s another thing to keep in mind when you start dating: the first present you get your lover should be something simple. Like a pencil. It’s best to keep her expectations low. I once dated a girl for five years, and on our fifth anniversary I got her a box kite. Had I gotten her that kite in the first year, I might be looking at buying her a pair of shoes on the fifth year. Go cheap early. As in any relationship, there is a time to love and a time to fight. Fighting happens quite a bit in a marriage. I’ve always thought a priest should never end a marriage ceremony with, “I now pronounce you husband and wife,” but rather with, “Let’s get ready to rumble!” The eventual break-up of my marriage wasn’t my fault, though. My wife actually ran off with my best friend. To this day, I’ve never been able to thank him enough. Whenever your best friend dates your wife, I don’t care who you are, it puts a crimp in the relationship. You spend half the day feeling sorry for him. I’ve always found that marriage is the quickest way to a divorce. I live in a condo, and I’ve been seeing this girl for about three months now who lives in the apartment across the street. But that’s just ‘cause I have a pair of binoculars. What can I say? I enjoy window shopping. It’s tough getting back out into the dating world. I’ve recently had some crazy dates. I put up an ad on an online dating service. I was up-front, honest and truthful. I said I wanted an old-fashioned girl who would stay at home and cook and clean for me. I got one “interested” response. It was from my mom. Maybe it was my profile picture of Tony Curtis that caught her eye. I always wanted to find a girl just like my mom, but at this point I’m willing to settle for any girl who’s not my mom. The last girl I went out with was not very bright. When I met her at the restaurant she was wearing big wooden shoes. I asked her why she was wearing them and she replied, “I thought you said we was going

Dutch tonight.” Then, when we were looking at our menus, I asked her if she wanted to share something. She said, “Okay, when I was ten I French kissed my babysitter.” I told her I meant share something off the menu. Eventually, when the food came, she just stared at her meal for twenty minutes. I asked her what she was waiting for. She said she was just watching what she eats. Sometime during the dinner she got up and went to the bathroom. As women are prone to do, she took her purse with her. Now, ladies, how do you think that makes us guys feel, sitting there, with nothing to rummage through? I like women of all shapes and sizes. I went out with a chubby Oriental chick named Sue Wee. She was kind of shaped like Dodger Stadium, but that’s just a ballpark figure. She was a really nice person, and it didn’t matter that she had reverse anorexia. There was just more to love. Much more. As our relationship progressed, Sue threw out that dreadful question: “Do you think I’m getting fat?” I didn’t want to make her feel bad, so I softly stroked her hair and said, “No honey, you’ve always been fat.” She told me she had recently lost twenty pounds and I made the mistake of gently responding, “Look behind you and you’ll find it.” (I thought women liked honesty in a man.) All in all, I did feel something for her. It was like magic every time I saw her. Magic was the only way I could explain how she got her butt into those jeans. I once dated a really skinny girl. I’ll never forget the first time I held her. She felt so good between my fingers. I was playful, swinging her like a five iron. Sometime during the relationship we became engaged and she wore my ring. On her wrist. We eventually broke up and I heard she moved to Colorado to become a ski pole. Another time, I went out with this lively Italian bella. This girl had beautiful, dark shiny hair. Unfortunately it was on her upper lip. Maybe I’m picky, but I only like a handlebar on a bike. Then I found out she was easy like Sunday morning. Her nickname was “fire sale”, because her pants were always half off. I hate to admit it, but I think that was a big reason why we lasted so long. I don’t like people who cling to me, invade my space, and never leave me alone. That’s why I refuse to sleep with myself. I’m too needy. I like attention. I can have people talk about me all night long. Really. I’m riveted by the conversation, and sickened, too. My dating life went through a dry spell for a while. I actually hired a maid just so I could tell my friends I have a girl over the house at least once a week. I was so

hard up for some companionship that I took my living room lamp out to dinner: a cheap date, but she was extremely bright. The night went badly. I tried everything from compliments to sweet talk, but no matter what I said to the sexy lighting stand, I couldn’t turn it on. I got frustrated so I started drinking. Then I became drunk and ended up wearing her lampshade for half the night. Incidentally, the lamp thought I looked great in the dark. Some time ago, I went out with a very sweet visually impaired person. Yeah, I guess you could say it was a blind date. I took her to a nice romantic restaurant and, as we were leaving McDonald’s, I began to drive her home. (Luckily, I was the one who drove.) Anyway, when we were in the car I felt this heaving, breathing and nibbling in my ear. So I turned to kiss her and it was her seeing-eye dog. I decided to drop the girl off and go out dancing with the dog. A week later the dog dumped me. Two weeks later I went to the doctor and got some bad news: the bitch had given me fleas. Sometimes I’ll go fishing in a bar, trying to reel in an easy catfish. One time I saw this quiet, homely girl in the corner, sipping on a glass of wine. I got up my nerve, went over to her and said, “Excuse me, are you free this evening?” She smiled, and the next thing you know, we went back to her place. She had lied to me. She wasn’t free that night: she was $300 an hour. I tried dating an older woman, but we only had one thing in common. She was looking for a rich man to support her and I was trying to figure out if her husband had died and left her any money. In the end, we didn’t work out. It’s tough to carry on a conversation when one of us is rambling on about senior discounts on pharmaceutical medications and the other is trying to describe a Family Guy episode. I know I’m not great-looking. I’m not good-looking. I’m not even okay-looking. I’m just looking for someone who can tolerate me. Tolerance is a noble and rare quality. I would just like to find a woman who will (wink, wink) you know (wink, wink) go out in public with me. Look, you never know whom life is going to throw your way. It’s easy to get lost trying to find someone. I know what women like: they’d like for me to leave ‘em alone. Finding the right person is a painstaking process. Before you settle down with someone, make sure that person is a friend, a lover, and a beautiful person. So do what ya gotta do. And then tell me how to do it. “Ham on a Roll”

by Jeff Charlebois jeffcharlebois.com ABILITY 7

ow did you celebrate the new year? I welcomed 2011 by having the metal plate taken out of my collarbone. This time when I went to the hospital I didn’t have to stay the night, and the surgery was pretty quick. I always seem to have bad reactions to anesthesia, and this visit was no exception. I got really dizzy and threw up a bunch of times. I even had to get special medicine from the doctors. I’m just glad it’s all over. Anyway, now I’m back on track. Last week, I got the green light to start riding and training again! I have an “on the bike” photo shoot next week, so it’s important that I get back in the habit. My season of racing doesn’t officially start until May but now is the time for me to do all of my pre-race work. This is the time of year when my family and I sit down and try to plan out my racing season. Sometimes it can be stressful to put a plan down on paper and make new commitments for the upcoming year, but it’s something that needs to be done. I am very lucky that my family and my closest friends all help me out. This year there will be eight rounds of racing for female competitors and, of course, I’ll be competing at X Games again. Everything seems kind of far off right now but I know the season is approaching quickly. The men’s supercross season has already started, and I was lucky enough to go out to California to watch the first round of their racing season. It’s an exciting time, and it was a lot of fun to see everyone again. I’ll be at another supercross race next weekend and plan to sign some autographs for my fans. I’m definitely looking forward to being there! In other news, one of my sponsors, Purple Communications, teamed up with Red Bull to pay a visit to my old high school. Red Bull made a captioned copy of a show I did for Fuel TV called “First Hand.” Janna, from Purple, worked with Red Bull to get the DVD and then contacted the Florida School for the Deaf and Blind (FSDB) to set up a time for me to drop by.

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I was really nervous about going back to my old school. I hadn’t been back since 2005! I started to wonder what the new students would be like, and I wasn’t sure how my old teachers would react to me. I was pretty shy when I went to FSDB but I am a different person now, and I wanted to walk in to the auditorium with confidence! I teased my mom that I would walk onto the stage and curtsy. She dared me to do it! Janna played the “First Hand” DVD and then introduced me. I walked slowly onto the stage and did a big curtsy and waved hello to everyone. I looked down at my mom and saw her laughing. I showed the students my racing gear and my X Games medals, and then I opened the floor up to questions. The students had some really good ones! After the movie and questions I went out into the lobby for pictures and autographs. I also brought copies of my book and signed them. While meeting all of the students, I had a chance to see all of my old teachers. It was such a wonderful feeling! They all were very proud of me and I told them I was thankful for the education they helped give me. One of my favorite teachers, Katie, said, “I remember sitting down to do your Individual Education Program (IEP) and asking you what you wanted to do when you left FSDB, and you always said, ‘I want to be a professional motocross racer!’ We laughed and wrote it down on the IEP but we never thought it would happen! And now today you are a professional motocross racer!” It felt so great when she said that. ashleyfiolek.com

Ashley signs, “Good to go!”

My little brother, Kicker

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s a successful songwriter, an accomplished percussionist, and the co-founder of Deaf Professional Arts Network (DPAN), Sean Forbes experiences music in a way most of us can only imagine. In an interview with ABILITY’s Molly Mackin, Forbes discussed his unique career and how his deafness prompts him to tackle the world of music in a way few have heard it before. Molly Mackin: I understand you recently got married. Congratulations! Sean Forbes: Thank you. Yes, I got married in October. I have a deaf wife who loves music because I shared it with her. Mackin: Tell me a little bit about your music. How did you get your start in such a challenging industry? Forbes: Music is something I’ve wanted to do my entire life. I was always around music, growing up. My parents played it during car trips, and we had all kinds of drums and guitars and other instruments in our basement. At an early age, my brothers and I decided we wanted to develop careers in the music business. I’m the only deaf one in the family, and also the only one who, as an adult, actively pursued music as a career. Mackin: Oh, really? Impressive. Forbes: I know. Crazy. (laughs) Mackin: How long have you been deaf? Forbes: I became deaf at a couple of months old. I had a high fever and, although it was never officially diagnosed, it’s believed I became deaf as a result of spinal meningitis. I like to tell people that I became deaf because I was playing music too loud. (laughs) Mackin: So you’ve essentially been deaf your whole life. How do you then translate something like rhythm? Forbes: Rhythm is something that is born inside of you. When I was very young, my parents noticed I could make a rhythm that was consistent, like a beats-perminute, essentially. When I was five, my parents bought me a drum set because they noticed my propensity for rhythm. I think it’s something that comes from inside. Every time I listen to a new song, or even an old song I know, I always try to follow the different rhythms that happen throughout it. Bass and drums are pretty simple for me to follow, but sometimes I’ll be in a situation in which I’ll have a different point of reference when I’m listening to something, and I’ll be able to pick up the guitar or the piano line, and follow that rhythm. For me, following melody is what is pretty hard. I usually ask my family, or people with whom I work,

about the melody when I’m listening to or writing a song. “How’s this melody going?” They’ll show it to me by imitating the music. My brothers always shared new music with me as we grew up. If there was a song by Mötley Crüe, they would act like Mötley Crüe and demonstrate it. Mackin: Sort of like live-captioning. Forbes: Yeah (laughs). I was fortunate to grow up in a time when MTV was popular. When I watched it, I’d not always be watching the video; instead, I would focus on how the different musicians played their instruments, because it was something I wanted to do. I thought Mötley Crüe was so cool, so I would watch how Tommy Lee played the drums, and how Nikki Sixx played the bass. Mick Mars was off in his own world, and Vince Neil was, too. (laughs) Mackin: So when you say your family would imitate the music for you, would they dance? Would they play the air-drums? Forbes: Yeah, air-guitar, air drums. At the time, I think MTV didn’t have closed-captioning. I’m such a good lip reader, though, that when I wanted to listen to a new song, we would turn on the television and my brothers would stand there and lip-sync the words for me. There were so many things, growing up, that enabled me to participate in music. Every time we would go on a family vacation, my mom would play all the oldies from the 60s—the Beatles, the Eagles, the Rolling Stones—and would drive and sing along. I would read my mom’s lips to follow what was happening in the song, and I’d put the side of my leg against the speaker so I could feel the rhythm and keep the beat. I also made my mom turn up the music. I’m surprised my whole family isn’t deaf from all those long car rides. I was very fortunate, growing up, to be in a family that wanted me to experience the music that was such a huge part of their lives. Mackin: In your song “I’m Deaf,” you have some really great verses, and they all rhyme. Rhyming has a lot to do with the sounds of words. How does that work when you’re writing? Forbes: I’ve been writing songs since I was a kid, and I grew up reading poetry and lyrics. I would often go on Bob Dylan’s website and just read the lyrics. Over time, just by looking at how any rapper rhymes words and fits syllables into verse, I got to a point at which meter and rhyme schemes became very natural for me. I honestly believe that came by reading. We all have narrators in our heads. Mackin: A lot of words are read one way and said a much different way, especially in the English language.

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Forbes: I know a lot of rappers who bend words and make them rhyme. “I’m Deaf” came out of me so quickly I didn’t really have time to study the process. I had written a lot of variations of that song, and then I got with a producer and the song just came out. I don’t like beating up songs. Sometimes I’ll be working on something and it comes out in less than 30 minutes. Sometimes it’s not coming out and I put it aside, and I come back to it or I don’t. Mackin: Do you write any poetry? Forbes: I’ve written a lot of poetry. I’ve been lagging on it lately, though. I write a lot of lyrics, and sometimes they look like poetry, and other times they look like songs. To me, there’s not always a big difference. Sometimes I just write a poem on the spot. Recently, I’ve been writing a lot of music without music, right off the top of my head. I’ll come up with a simple drum track and write a song around it, which is usually like writing poetry. Sometimes it’s the music that drives the lyrics, sometimes the lyrics come first. When I read poetry, I can usually envision music in it.

music and techno, because they can feel the pulse. There have been people in the past who have questioned my career. They ask, “Why do deaf people need music? We’ve lived our entire lives without music, so why do you want to bring music to the deaf community?” But there are so many people who own iPods, iPads, and iPhones. Of course the deaf kids are going to want all those cool things and to follow the same trends. I had an audition a few weeks ago, and I asked the kids to come ready with a song. These girls came in and wanted to sing Justin Bieber. Obviously these kids are getting their tastes from television and from schoolmates, as well as from the trends and fads they’re hearing friends follow. When I was in high school, my tastes were influenced by my hockey teammates and by my brothers and other people my age who weren’t deaf or hard-of-hearing, even though most people weren’t as into music as I was. When I went to college, I started to realize a lot of deaf and hard-of-hearing people love music. I attended Rochester Institute of Technology and lived in an alldeaf dorm. I’d walk down the hall and hear Eminem’s “Cleaning Out My Closet,” or some Jay-Z song. Not only that, but I met a couple of deaf people who played musical instruments. I’d pick up a guitar and start playing, and they would be like, ‘You play the guitar?’ Then I would go to someone else’s room and pick up a bass and do the same thing. It was interesting to see how many people loved music, even though not everyone had grown up with the same background I did.

Mackin: How do you write a melody? Forbes: The same way I get people to imitate musicians for me. I’ll be writing a song, and at a certain point I’ll ask a producer, ‘How does the melody to this song go?’, and he’ll sing the different pitches for me, which give me an idea about the changes of the song. Then I’ll write a lyric to it. There are a lot of people in this organization at whom I can throw things, and sometimes even my dad will give me ideas. But I write all my lyrics myself. Mackin: I noticed while watching a video of you performing that you have a really nice “flow.” Have you ever done slam poetry? Forbes: (laughs) Thank you. I’ve never done slam poetry before, but I have a lot of friends who do it. I’ve done freestyle rapping with friends. I’m really used to working with and writing music, and slam poetry is a little different in the way in which things are structured. I think it’s a really cool art form. Mackin: Is music common in the deaf community? Forbes: Yeah! There are a lot of deaf people who love playing music in their cars while driving. Mostly they play music that’s dominated by drums and bass, like rap 12

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I grew up reading rock and roll history books. I knew everything about all the old groups. So when I started to see that all these deaf people love music, I felt like I had to do something. I had to do something about giving music to the deaf community. I was always signing songs to my friends—mostly to girls, because it was a good way to get them to notice me. Mackin: I read somewhere about you and Eminem working together. Is that right? Forbes: When I first started working here, he was a big supporter of what I was doing. I showed him a video of me signing one of his songs. When he saw that, he looked at me like, “Deaf people like music?” He was really surprised to see there was a deaf community that loved his stuff. Most people think “deaf,” and they think, “Oh I can’t share my music with them. They’re not going to understand what I’m saying.” But a lot of deaf people relate with what Eminem expresses in his music: they struggle, they feel frustrated, they get pissed off. I relate to him in a different way. He was a white kid trying to get into rap music, whereas I’m a deaf kid trying to get into the music business, in general. I mean, it’s a struggle. I know he definitely connects with what I’m doing. deafandloud.com

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student was struck in the head by a bullet fired, apparently by accident, from a gun carried in another student’s backpack. As I listened to the media report on these two incidents, it occurred to me that most people have limited or no understanding of the treatment and conditions of those whose brains have been injured by handgun projectiles. My training as a neurosurgeon in Washington, DC and my work in Oakland, California in major “inner city” trauma centers has given me the opportunity to treat more than my fair share of penetrating head injuries. Let me do my best to shed some light on the repercussions of cranial gunshot wounds. Several things make GSWs to the head different from, say, the damage done by striking one’s head on a windshield at 75 miles per hour. In the latter case, the damaging energy transmitted through the head is distributed throughout the brain. In cases of GSWs, however, “cavitation” is created as a bullet passes through the brain.

“BULLET IN THE HEAD”

t may be the title of your favorite Rage Against the Machine song, but it’s also a grim reality in our society. Although the murder rate in many of our major cities has recently been on the decline, the United States still leads the world in civilian gun violence. Even some of our nation’s smaller cities—like its capitol, Washington, DC—have held the title of “Murder Capitol of the World” by boasting the highest annual number of murders per capita. The “upside” to these circumstances is that, in times of relative peace, our military surgeons in training can visit major trauma centers to receive experience in treating “penetrating” trauma (gunshot and knife wounds); it’s the sort of life-saving experience these doctors cannot otherwise obtain when there is no battlefield. In contrast to penetrating trauma, “blunt” trauma refers to more common injuries like those incurred in motor vehicle accidents and falls from heights. The distinct mechanical nature of these types of injuries requires that they receive different methods of treatment. Most severe trauma calls for the expertise of specially trained surgeons who can find and control internal bleeding and resuscitate patients who suffer from blood loss. Gunshot wounds (GSW) to the head have lately been prevalent in the media, following the shooting of Arizona Congresswoman Gabriel Giffords, members of her staff, and constituents. No less disturbing was the recent school shooting in Los Angeles in which a female

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Cavitation denotes the large column of damaging energy that surrounds the course of a much smaller missile as it travels at a high velocity through solid matter. Almost all GSWs that cross the brain from the entry point to the opposite side of the head end in death. Naturally, highvelocity military grade weapons are even more devastating than the handguns that pollute our city streets. Even a “grazing” injury from an M16 can emit enough force through the brain to cause death. Since the presence of a resting bullet in the brain seldom causes harm, removing the bullet is not a recommended surgical treatment—in fact, such a procedure may result in more damage. The same holds true for most GSW cases throughout the body. This is why a number of gunshot victims continue to walk around with bullets lodged inside of them. It is recommended, in cases of GSWs to the head, that the entry and exit points simply be debrided (cleaned up) and closed (sewn up). Bone fragments should be removed if near the surface and easily accessible, and the dense covering of the brain (called the dura mater) should be repaired to keep spinal fluid from leaking. Any aid beyond this will not help the brain recover. The similarity between penetrating and blunt brain trauma lies in the fact that destroyed brain cells cannot regenerate. While “stunned” brain cells can recover function, there is no way to predict how much a person can improve after an injury. It generally takes three to six months for a GSW patient to reach maximum improvement. Few treatments are available for brain injury and most of them have little effect on outcome. Because nothing can be done to aid brain cells destroyed by the initial injury, modern treatment focuses instead on salvaging those cells that hold the potential to

recover. One of the reasons the brain is particularly sensitive to the effects of trauma is because it is confined within a rigid box: the skull. All tissues swell when they are injured, but the skull leaves the brain no room to swell. As a result, pressure rises inside the head and makes it more difficult for blood to reach the brain. In light of this fact, the focus of acute brain injury treatment is on reducing swelling or “intracranial pressure” while maintaining enough blood supply to meet the demands of the brain’s healing tissue. A number of medical treatments are applied to achieve these ends. First, the patient’s ventilator rate is increased to lower carbon dioxide (CO2) in the blood stream and decrease the volume of blood vessels in the brain. This must be done carefully to avoid restriction of blood flow. Intravenous solutions of a drug called mannitol or highly concentrated salt solutions are also used to reduce swelling. As in the case of Ms. Giffords, the patient might also be placed in a “medical coma”—deep general anesthesia—for several days. While asleep, the brain requires less oxygen and nutrients, and is thus less vulnerable if blood flow is inadequate. In dire situations of brain swelling, one or both halves of the skull can be temporarily removed to allow the brain more room to swell. Typically, about one week after injury, swelling resolves on its own. It’s worth noting that some glaring absences occurred in the media reports about Giffords’ condition. It is what the doctors were not saying that concerned those of us “in the know”. The bullet reportedly struck Giffords in the left temple and exited on the same side of her head, near the forehead. The good news here is that the bullet did not cross through the center of the brain— had it done so, the injury would likely have been fatal. However, the left temporal and frontal regions of the brain not only control movement on the right side of the body, but also, in most of us, the ability to speak and understand speech. As of yet, the media has not fully disclosed the true gravity of Ms. Giffords’ injuries. Ms. Gifford was recently moved to a rehabilitation facility, and it’s reported she will receive intensive therapy from speech, occupational, and physical therapists. Their goals will be to facilitate the recovery of use of Giffords’ right arm and leg, as well as her ability to speak and understand speech. Our thoughts are with her and those injured or killed in the incident, as well as with their families and loved ones. by Thomas Chappell, MD biausa.org ABILITY 15

s part of an ongoing effort to celebrate and promote businesses that work to make the world a safer, more efficient, and more welcoming place for people of all walks of life, ABILITY is pleased to profile the latest recipient of its Best Practices Award. This issue, the editors applaud Sprint Nextel Corporation for its innovative implementation of Video Relay Service (VRS) and for its spirit of inclusion, both in the workplace and in the consumer marketplace.

l SPRINT l Since the 1970s, Sprint has maintained its position as a dominant and forward-thinking force in the world of telecommunications, a business marked by entrepreneurial vigor and “pin-drop” clarity of message. In the late 1990s, Sprint developed the only nationwide personal communications service (PCS) in the United States. In 2005, the company bought Nextel, further strengthening its role in the ways in which we connect and communicate. In more recent years, the technology giant has shown no signs of shrinking, and has in fact applied its considerable influence and ingenuity to improving the ease of communication for people with disabilities—particularly for the 24 million Americans who are deaf or hard-of-hearing. Thanks to CapTel—a “closed-captioned telephone” developed by Ultratec and provided by Sprint—phone conversations need no longer be a challenge or annoyance for the deaf or hard-of-hearing. With the aid of this innovative new technology, users can read captions on a built-in screen while in conversation. This advancement allows for a more natural, emotionally accurate dialogue between participants by eliminating or reducing the need for a third-party translator. Additionally, with the evolution of the 4G network, Sprint Relay is shifting its developmental resources 16

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toward wireless communications using Sprint’s 4G technologies. This will take customers into the future allowing for barrier-free access to the telephone. Sprint Relay is proud to present: Sprint Mobile Video Relay Service (Sprint Mobile VRS). Sprint Mobile VRS is a free Android app, currently available on the Samsung Epic 4G, for deaf and hard of hearing individuals to connect with qualified video interpreters who relay their phone calls. The Sprint Mobile VRS app also supports Spanish VRS and the ability to video chat with any videophone. In addition to this, users will receive video mail on any missed calls. The company’s “flexible messaging” services expands its theme of inclusion even further, allowing customers with deafness or speechrelated disabilities a customizable text messaging service via their Sprint PCS phones. Like many of the most successful businesses, Sprint recognizes that its prosperity rests in its ability to appeal to a diverse spread of consumers, an awareness that is expertly reflected in the broad accessibility of their services. Recently named by Forbes as one of 2010’s “Top 20 Most Responsible Companies” for advanced policies on diversity, Sprint has held a 100% rating on the Human Rights Campaign Corporate Equality Index for five consecutive years. This is a company that not only understands the value of communication, but also of those who seek to be heard, seen, and understood. sprint.com

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REEL Enjoyment

BLIND FISHING BOAT IMPROVING FISHING EXPERIENCES

“I’ve tried a lot of sports over the years, and there is nothing that compares to fishing, in terms of built-in accessibility.” 18

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f all of the many facets of Lawrence Euteneier’s career—lobbyist, inventor, lecturer, dragon boat racer, fisherman—the term “matchmaker” seems the most appropriate description of the man. But Euteneier is a unique sort of matchmaker. His work is done on the water. He catches fish.

Euteneier is the founder of Blind Fishing Boat, a service that matches sighted fishermen with fishermen with visual impairments and allows both to enjoy the experience of hitting the water with someone else who loves to fish. Upon the launch of his service five years ago, Euteneier received positive feedback from many in the disability community, and found major support from sighted fishermen who were eager to help others. Euteneier views his program as one with benefits for fishermen and fisherwomen of all experiences and backgrounds. “It’s more like a dating service than an act of charity,” Euteneier said. “If a partnership works out, maybe the two become ‘exclusive,’ but there’s no shame in being a ‘player’ and going fishing with different people.”

Lawrence Euteneier (left) displays a ten-pound walleye caught in Lake Ontario.

Blind since age eight, Euteneier has a resume more similar to that of a senator than to that of a fisherman. The Canadian innovator was instrumental in developing Web-4-All, the world’s first computer capable of managing personal assistive technology based on an individual’s preferences. For his tireless work in the field of accessibility, Euteneier received Canada’s prestigious Federal Public Servant Achievement of Excellence Award in 2003, the First Lady of Taiwan Award in 2004, and the Meritorious Service Medal in 2006. Euteneier also served as Canada’s Access Technology Advisor from 1997 to 2000, and has documented innovations for people with disabilities throughout Sweden and Canada. In his free time, he participates as a member of a competitive dragon boat team comprised of people with visual impairments, and competes annually in a car race to raise money for the training of guide dogs. Despite his busy schedule and varied interests, Euteneier maintains that fishing is his truest love. “I’ve tried a lot

of sports over the years,” Euteneier said, “and there is nothing that compares to fishing, in terms of built-in accessibility. You don’t need bobbers to fish, and tying your own hooks is really quite simple. Fishing is mostly about the art of feeling the bite, and who better than to detect subtle differences with his hands than someone without sight?” Euteneier, who has fished his entire life, says he has no reservations about going after some big and formidable catch. “I’ve caught monster northern pike under the midnight sun in Canada’s Arctic, ancient white sturgeon in the Fraser River, and bull shark off Florida’s coast,” Euteneier said. “I even spent my summers working as a cod fisher off Cape Breton Island. When we’d pull a large number of cod, it’d be up to me to drive the dory back to the harbor while the captain and his son cleaned and washed the fish at the back of the boat. The captain figured it was safer for me to drive than to handle the razor sharp knives.” ABILITY 19

Euteneier (right), with guide Thomas Smith, holds a six-foot white sturgeon caught in the Fraser River, in British Columbia.

Euteneier’s experience as a master fisherman has rewarded him with a deep well of cherished memories, and he hopes that Blind Fishing Boat allows other fishermen to develop unforgettable experiences of their own. He began the initiative with the specific goal of providing opportunities for people with visual impairments to fish and meet others in the sport. The venture arranges recreational outings as well as competitions for fishermen. Euteneier also maintains a blog that provides tips for fishermen and information about the sport.

As the landscape of this popular sport continues to widen, Euteneier works to spread his inclusive message by writing, competitive fishing, attending exhibitions and leading seminars on the topic of fishing. His efforts to advance the technology of accessible fishing have helped the field develop into a worldwide initiative. Despite his efforts, Euteneier recognizes that technological advances don’t often happen overnight. For many people with disabilities, Euteneier says, technological evolution can feel a bit like a rollercoaster.

“The biggest concern I hear from other people without sight who fish is that they have trouble finding fishing buddies,” Euteneier said. “No one will say no to your face if you ask him or her to take you fishing, but you may never run into that person again. Many people are either too busy or maybe feel they don’t have enough information to fish safely with someone who is without sight.”

“At first computers could speak everything under the old DOS system,” Euteneier said. “Then, when Apple Macintoshes and Windows came out, everyone without sight who was making a living by way of a computer suffered a setback. Windows and Macs were eventually made to speak, but most of the new applications coming online in the workplace today have not been built to function properly with screen readers. So it’s been a downhill ride for the past five years, with barriers in the form of electronic applications that are designed to streamline workflow and eliminate paperwork.”

Despite the obvious differences between fishermen with and without sight, Euteneier emphasizes that all people interested in the sport share a common bond. “Everyone wants to fish with someone who fishes at his or her own level, or better,” Euteneier said. “Everyone, sighted or not, wants to enjoy the day on the water and maybe learn a few things. Many sighted people believe, wrongly, that fishing with someone without sight is going to involve a lot of time and attention.” Euteneier says this common misconception has inspired him to challenge fishermen with visual impairments to get better, to gain more knowledge about the sport, and to show off their skills. He calls for people with visual impairments to build a strong reputation of competence as fishermen, and encourages fishermen without visual impairments to recognize those with visual impairments are their equals at the sport and, in some cases, can be superior. 20

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Euteneier points out that many of these lurches and setbacks in the world of technology parallel the challenges faced by fishermen throughout history. “For centuries, fishermen living along Newfoundland’s coast navigated their dories without electronic aids, under extreme low visibility conditions caused by fog,” Euteneier said. “They obviously made it back to their home ports often enough to keep them going out. They navigated using their senses of feel, smell, and sound. They made use of the feel of the different waves as the depth below the boat grew shallower, the sound of the surf breaking on shore, the smell of spruce trees and chimney smoke as they approached land. It’s possible for anyone to develop these skills.”

Euteneier usese a similar set of observational skills to navigate his own boat. He’s aided by the fact that boating and fishing technologies have advanced over the centuries: depth finders, directional devices, radars, and of course visibility assistants all play a part in today’s angling experience. But Eutenieir says such devices have not yet been adequately adapted for people with visual impairments.

Euteneier and his MIRA guide dog pose with a 24 inch rainbow trout caught during the 2010 America Cup International Fly Fishing Tournament in Colorado.

“There is a strong interest, worldwide, among people with vision loss in access to marine electronics,” Euteneier said. “People with sight have been operating boats for centuries while ‘blind’ at night or in situations in which there’s low visibility. In fact, the ability to navigate while ‘blind’ remains a requirement for securing certain classes of captain certifications. When on the water, sighted people can only see about 15 miles before the horizon dips. This means setting a course, monitoring progress, scanning for hazards both underwater and beyond the horizon translate into working under conditions in which seeing what lies ahead isn’t always possible.” With the help of his Blind Fishing Boat initiative, Euteneier is intent on reframing the notion of what is or is not possible on the water. In 2010, Blind Fishing Boat went to 17 fishing competitions, earning first place at one and ranking among the top five at four others. Through a series of seminars, Euteneier has brought the initiative’s message of personal empowerment to more than 460 people with vision loss or impairment. He’s personally taught 16 people how to fish, or how to improve their fishing skills. He’s worked to get the story of Blind Fishing Boat’s published and promoted to thousands of people who may otherwise have never known that the sport of fishing is a possibility for them. In the end, Euteneier emphasizes that those possibilities—possibilities for fishermen with visual impairments—are exactly the same as the possibilities of people without visual impairments. The common goal for all fisherman, Euteneier said, is “hooking the big one” and telling an even bigger story.

Euteneier fishes from the first fishing boat capable of being operated independently by a person with vision loss.

“The most exciting part of fishing is the moment the fish bites,” Euteneier said. “Whether you’re fishing for sunfish or sharks, there’s nothing like feeling that first contact. Reeling that fish in, and being able to feel it in your hands and smell it, and to know you are taking part in a ritual that goes back to the beginning of time, leaves one feeling fulfilled in a way that is truly unique.” by Josh Pate blindfishingboat.com

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n the ever-expanding arenas of home computing, business technology and Internet navigation, access to information is today more critical than ever. ABILITY’s Chet Cooper and Liz Angeles sat down with Yahoo’s accessibility experts Alan Brightman and Victor Tsaran to discuss how the technology pioneer is changing the way people with disabilities connect with the world. Liz Angeles: What does accessibility mean, in respect to the work you do at Yahoo? Victor Tsaran: In a general sense, accessibility refers to the ability of people to access things. In the context of disabilities, however, accessibility means people with disabilities should be able to effectively accomplish whatever they need in their daily lives, whether that entails turning on a light or going on the Internet or dialing a phone number. At Yahoo, our primary focus is to make the Internet a better place, particularly in respect to the Yahoo! Network. We want our network to be accessible, usable and friendly for people who use assistive technologies. Alan Brightman: Roughly half a billion people come to the Yahoo! Network every month, and many of those people live with disabilities. We don’t know exactly whom, because we don’t need to ask, and those labels don’t make any difference anyway. All we care about are those users who have particular needs—maybe they want information on this or that, but they don’t use a computer or see the screen the same way most people do. We don’t believe any of that should make any difference to productivity. Yahoo wants you to be able to come and use the same mainstream product everyone else does, so it’s up to us to design a mainstream product that’s as usable by everyone as possible. Once we’ve done that, we’ve created a better-designed system. If there are curb cuts on the sidewalk, that’s a betterdesigned sidewalk for lots of people, not just for people in wheelchairs. We’re essentially trying to build better sidewalks across the Internet. Angeles: I know someone who has macular degeneration,

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and uses a computer screen with big letters on its display. How is Yahoo helping someone like her? Tsaran: Our task as a web company is to make sure that our websites will adapt to whatever it is that your friend needs to accomplish and be adjustable towards her technology. We make sure our websites will listen to her adaptive technology and work with it efficiently. That’s the way accessibility should work. The site should be interactive, obviously, but should also allow users to adjust content in order to be able to interact with that content. Brightman: The other thing we try to do is grab the lapels of people with macular degeneration who assume they can’t use a computer and let them know that they can. There are all kinds of ways to get online, to use a computer, to change your life in huge ways. But unfortunately too many rehabilitation professionals or medical doctors are unaware of that fact. A big part of what we try to do at Yahoo is evangelize for Internet access. Most people gain disabilities later in life. When that happens, some of the independence they used to have feels like it’s slipping away. We want to enable people to say, “I can do it myself again,” whatever that skill happens to be. It might be shopping, banking, socializing. You used to do it fine by yourself, and now you still can. You might just have to do it in a different way than before. Angeles: How does the work you do at Yahoo differ from what’s being done at other online networks? Brightman: Well, accessibility on the Internet is not really something about which to be competitive, because everyone should want to make their platforms accessible in different ways. But at Yahoo, we try to differentiate ourselves by virtue of our content—whether that be social content, or finding out how to buy a car, or finding out how your sports team performed last night. Tsaran: There’s a big networking component at Yahoo. Online searching is just one part of what people do on an everyday basis, but Yahoo provides a way for people to share information: we give them a piece of content and then they can share that content with other people.

Disability plays into this schema really well, because we want to make sure people of all abilities can access any content that interests them. If you can’t access the content, then you can’t do anything with it, right? But if the content is accessible in a way in which people can get to it with their assistive technology, they can take advantage of that content in the same way as people might who don’t use assistive technology.

rises, all ships rise. We’ve done some pretty tremendous things, difficult things, in the field of accessibility, and the last thing we’d want to do is keep our knowledge some kind of a secret. It’s online. It’s available to everybody. We can’t make sure you don’t see it. So everything we do, in some sense, has to be a model by definition, because it’s already out there as soon as it’s developed.

Brightman: There’s a fair amount of “e-commerce” that goes on across the network. If I decide to open my own store and I make the doorways too narrow for wheelchairs to get into, or if I put stuff too high up on the shelves, suddenly I’ve put myself in the sales prevention business. So in respect to Yahoo, I’m not doing all of this accessibility stuff just because I’m a nice guy. I’m doing it because we want everyone to make maximum use of the products we offer. If I’m building a store for e-commerce, I want as many people to be able to get in that store as possible. If I don’t have what my customers might need once they’re in my store, fine. But at least they have the opportunity, like everyone else, to do the shopping.

Angeles: What’s your opinion about user-friendly technologies like the iPad or iPhone?

Angeles: So if someone is, say, using the Yahoo! Personals or Instant Messenger, or is building an e-commerce site, in what ways is Yahoo making that easier for them? Tsaran: We make sure all modes of interaction, whether through keyboard or a mouse point-and-click input, will work fluidly with all of our websites. So, specifically, let’s say you use Yahoo! Messenger because you want to chat with someone. You should be able to type a message and read a message even if you don’t or can’t use a mouse. If you’re using Yahoo! Search and you don’t use a mouse, you should be able to find the edit field through keyboard use alone. And then, when search suggestions come up by way of our search engine, you should be able to read those search suggestions without having to click the mouse. Brightman: And we make sure all Yahoo tools for site construction have accessibility built right into them, so that every site can adopt that accessibility. We don’t want accessibility just to be a special thing at Yahoo alone, we want it to be another performance criteria by which the quality of a site can be measured. And as we continue to create tools that are accessible, we make sure our engineers know about various kinds of disabilities, so our engineers can then test against those yardsticks for accessibility. That way we’ll always know we’ve built the best website possible—a website more people can use. Angeles: You’re suggesting Yahoo is essentially trying to build a model for other companies to follow? Brightman: In some sense, yes. I think anyone who’s been in a leadership position in terms of accessibility wants to share that knowledge, because if the tide

Tsaran: When the iPhone 3GS came out, it came with built-in accessibility. It has a built-in screen radar for blind people. It has a built-in screen magnifier for people with limited vision. It has closed-caption support for people with hearing impairment. So it’s a device that comes with accessibility support tools built in. At Yahoo, we don’t create any hardware. Our job is to put Yahoo applications on the iPhone or, if people are viewing our websites on their iPhones, to ensure our websites work with any assistive technology built into the iPhone. And from what I understand, the same assistive technology on the iPhone is going to be available on the iPad, so that means the Yahoo websites will work with those tools as well. Brightman: The iPad is basically like a Macintosh computer, but it’s a new platform. Around the world—and Yahoo is an incredibly international company, so we’re very aware of this—most people’s first experience with the Internet is by way of a cell phone, not by way of a personal computer. With this in mind, we have to make sure that, no matter what your model of cell phone, no matter what provider, everything we offer is accessible to everyone. We are working to cross-platform the world, essentially. Angeles: But with all this cross-platforming and website linking, do you also track your users and what they’re doing? Are you tracking the kinds of things they like? Brightman: There is no website of this magnitude that wouldn’t do that. What Yahoo wants to do, since we’re going to keep everything free to you by running advertisements, anyway, is provide you with the advertisements that are appropriate for you, that are actually useful to you. The only way we can know what might be pertinent to you is to ask the questions, “Where have you been before? What kind of places have you visited? What do you like?” Recently, since people are so worried about the kinds of information a company like Yahoo might collect, we’ve begun to say something along the lines of, “Here is our guess at the advertising categories that might interest you. Take a look at our suggestions, and if you don’t like them, you can change them.” So we’re essentially getting our advertisers to start targeting a profile instead of a person. No one loves advertising, but if you’re going to get it, ABILITY 25

Photo by: Nancy Villere - CrushPhotoStudios.com

make dynamic content accessible? How do you develop interactive websites that expand things on the page or that enhance parts of the page and are continually updating? We’re now in a new era of dynamic interaction that has never before existed, so we need to be able to guide our users effectively and explain to them how best to interact with this new interface. It’s a whole new world. Brightman: My goal would be that whenever there are conversations happening at high levels anywhere about web accessibility or about users with disabilities, someone in that conversation is saying, “Where is Yahoo? What is Yahoo’s view on that?”

Alan Brightman, PhD

anyway, you might as well get ads that could potentially be useful to you. Every website collects information. The real issue is how to respect a person’s privacy when that’s being done. Angeles: For people who are blind or who have lowvision, how do pop-up ads translate to reach them? Tsaran: One way is through the use of text ads, because text ads can be read just like any other ads. Or advertisements can be spoken to you audibly. Angeles: Can you then communicate verbally and say, “Skip ad”? Tsaran: We use an assistive technology shortcut key to skip over the ad block. We make sure that that block is skippable. The reason people don’t like ads is because, for the most part, ads are graphical. Text ads are easier to avoid and graphical ads aren’t accessible for people with vision impairment. But I think if we made graphical ads more accessible, perhaps people would say, “You know what? Ads are okay. As long as I know what’s in the ad, I can decide what to do with it. I can read it or skip it.” Angeles: What are some goals for Yahoo that haven’t yet been accomplished? Tsaran: A big dream of ours is to ensure that when people use mobile phones, they go to Yahoo and find that we’re the friendliest network out there. This is the big dream. There is a lot of innovation that goes into the field of disability accessibility itself, and we’re always working to make the most of that. How do you 26

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Yahoo has so many users that if we just impact a small percentage of those users, that’s still a very formidable number of people. In light of this, we are playing an ever-increasing role in things like the Federal Communications Commission’s recent broadband plan for accessibility and the United Nations human rights convention on the rights of people with disabilities. Let’s make Yahoo more and more a part of these conversations so that, to the best of everyone’s abilities, these issues are handled well. Chet Cooper: What is Yahoo doing with the convention for human rights? Brightman: Well, we’re evangelizing like crazy the importance of full accessibility and rights for people with disabilities. It was really important, even symbolically, for the United States to become a signatory to that treaty, but where I’d love for us to play more of a role is in underdeveloped countries, where the rights of people with disabilities are consistently trampled. One of our biggest stories has been the success of the Yahoo Accessibility Lab. We opened it a little over two years ago, and just about every executive has been through it, not to mention all sorts of product teams and developers. They wonder about our work with disability accessibility, you know? In a sense, it’s like, “Well, who are these folks with disabilities, anyway? Why does Yahoo care? Is this a philanthropic thing?” And of course it isn’t. So we kind of give our visitors a little context. For example, we put our engineers through some disability-based simulations at which they will inevitably fail. We have people attempt to write their names onscreen after being “paralyzed” from the neck down. Half of them will try to do it with their noses. They’ll go through this wonderfully frustrating, really enlightening experience. Then they’ll work alongside Victor on some accessible devices by which a person with a disability can better access the Internet. So these people walk out of the lab after about an hour and tell us they’ll never see the world, particularly their own workstation, the same way again.

The beauty of the lab is that it has become a very dynamic, popular place to invite other companies and thinkers. Google has been in our lab, Netflix has been in our lab, Mozilla has been in our lab and, most recently, a group of about a dozen nineyear-old Girl Scouts was in our lab. Sons and daughters of Yahoo employees will often ask if they and some of their classmates can come check it out. We love that. Most kids haven’t yet learned what things are taboo. They notice disabilities and are curious, and we want our engineers to notice. A year ago we opened our second lab, this time in India, because so much development is going on now in that part of the world. It’s interesting to see how these kinds of efforts have really gotten into the DNA of the company. Disability accessibility is no longer a special thing that Victor and Alan do. It’s what we all do. And that’s really where we wanted to be. Cooper: I’ve talked to Adobe many times and have asked them, “Why don’t you default everything as accessible in your products? Why does a user have to go through a certain menu item and then go down and select something to make the program more accessible?” I’ve never quite gotten a good answer. Brightman: Oh, it’s getting better, believe me. I was having dinner with some Adobe people last night, and they’re well aware of all the criticisms that are leveled against Adobe’s products in that arena. Tsaran: To their credit, Adobe has done some pretty innovative things. It made PDF documents accessible and really advanced the accessibility of Flash media, which is big on the Internet. When it comes to technology, it’s not so easy to just flip a switch and make something accessible. I can only say that Adobe is trying hard given the resources it has. The best we can do is appreciate the positive stuff Adobe does and be less concerned with the negative things. Brightman: If you can maximize accessibility in your site, that site rises in the search lists. If I have a video with closed captioning in it, that captioning doesn’t just have to be for people who are deaf. It is also there as metadata, so I can use it to search video. If all of my images have text, it’s beneficial for everyone, and suddenly people are saying, “Hey, this accessibility stuff has got a nice advantage for search engines.”

Tsaran: Increased accessibility benefits everyone. If you want to make your website run faster, you can use cleaner coding standards, and that will make the site more accessible. You want your site to be more searchable? Make your code closer to accessibility standards. So accessibility is pretty much in everything we do, and it makes sense from many angles—performance, usability, access, and so forth. Brightman: One of the big misconceptions about website design is the idea that, if we have to add in accessibility functions, the website itself will be more expensive to produce and maintain. That’s just not true at all, particularly if you’re building a product from scratch. If you start out with accessibility as part of the design, that accessibility is just another part of what you would normally do to build any website. The misconception is that the implementation of those functions is going to be more expensive, but the only case in which that would be true is if we’re dealing with some really advanced, hard-core site that pre-exists, and somehow we have to add accessibility onto the site after the fact. That’s a lousy way to design stuff, but sometimes it’s inevitable. Another common misconception among web designers is that if they have to make a website accessible, those alterations will ruin the aesthetic of the site. But that’s ridiculous. A lot of tools already exist in your computer that ABILITY 27

you might never use. They’re actually built into your computer, whether you’re a Mac or a PC user, and if you need them, you’ll invoke them. If not, you’ll never notice them. None of them ruins the aesthetic. Tsaran: The important thing here is the element of choice. There’s never going to be one design that’s going to make everyone happy. So what we aim to do is offer people more choices. If you go to the Yahoo home page, a link on the right side reads, “Page Options.” If you pull that menu down, it’ll give you the opportunity to change the colors of your page. That’s just a little thing, but it’s one more way to say to the user, “If you don’t like our colors, you can change them to the ones you do like, and we’ll give you a couple of choices that our designers have put together.” Brightman: I would say that in the last two to three years, there hasn’t been a new “How to Build a Website” book that hasn’t included accessibility. So the topic is definitely out there. If you’re taking web curriculum courses and they don’t have accessibility as part of the course, it’s a bad course. If I went to architecture school and tried to graduate today without knowing about accessible architecture, I’d flunk. You cannot imagine somebody submitting an architectural plan that wasn’t accessible, and that’s the place we want to get to in computer usage as well. We want to get to the point where it’s inconceivable that you would build a website that doesn’t have accessibility, not only as a part of it, but also as not a big deal. It’s just there. It’s not the “special” class anymore. It’s a good mainstream product. Cooper: What kinds of advancements are being made in online video content and accessibility? Brightman: That’s a huge issue, actually. Roughly twothirds of the video content online is user-generated videos. Unlike the one-third that was previously broadcast and had to have captions by law, this user-generated stuff goes online and doesn’t have to have captions. In a nutshell, I worry about the deaf teenager who shows up at school one morning and finds all of his friends are talking about a YouTube video they watched the night before—a video he couldn’t hear and that wasn’t captioned. So immediately this kid is feeling further and further behind his peer group. There have been different efforts underway to try to make machines figure out what it is that people in these videos are saying. We’re still so far away from doing transcribing in a reliable way and, to me, that’s one of the last huge accessibility problems online. As the Internet expands, there’s only going to be more and more multimedia, more and more video, and I think deaf folks are going to have a harder and harder time of it if we don’t make some advancements soon. Angeles: Captioning is pretty tricky. I used to be a 28

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court reporter, and it took me a long time to train to do real-time transcriptions. We have so many homonyms and different word usages in the English language. Brightman: Exactly. Internationalization is another form of accessibility, in a way. If I make something that’s really terrific, but only people in the United States can take advantage of it, then it’s not accessible to the rest of the world. Internationalization in many ways has become increasingly more automatic—programs and innovations are “rolled out” to everyone, across the world, on day one. And accessibility for people with disabilities is getting there. Angeles: Yaa-hooo! Brightman: I like that! We can use that. Give me an audio file of that! [laughter] Tsaran: In the accessibility industry we focus a lot on how to code and how to make a website compliant. But what we too often forget about is the “people aspect” of disability. Making stuff accessible means asking the question, “Can I actually use it?” Forget about what code is there. The real question we ask ourselves at Yahoo is, can people actually use and enjoy the stuff we create? And once they can use it, what can they do with it? We’re really about involving people, letting them become part of the network and have fun. Brightman: Not that long ago, it was determined four billion images had been uploaded to Flickr. Can you imagine getting those in an envelope from your drug store? “Here are your pictures. Four billion.” There’s not a number in the whole Internet scheme that isn’t mind-blowing. The number of users, the number of minutes spent online, every number that has anything to do with the web is completely astonishing to me. Cooper: I interviewed Dean Kamen, the developer of the Segway. I asked him if any adaptations could be made to the Segway to allow it to be operated by someone who is blind, and he said it should be possible. There are so many products that can be adapted for people with disabilities. Brightman: Right. I know there are people right now who look at things as basic as the cane and say, “Is that the best we can do today?” There’s a lot going on—a lot of creativity and invention. Cooper: With Global Positioning Satellites, it seems likely that cars will eventually have technology that would make steering unnecessary. The car would know at any give time where it is in relation to others. Brightman: Oh, I don’t think I’ll be on the road at that time. [laughter] yahoo.com

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The Lokomat in action

n addition to being fertile soil for big-screen thrills, the field of robotics is playing an increasingly crucial role in modern medical rehabilitation. ABILITY’s Chet Cooper and Dr. Thomas Chappell recently spoke to W. Zev Rymer, MD, at the Rehabilitation Institute of Chicago. As the Institute’s lead researcher, Rymer works closely with Northwestern University faculty from the departments of engineering and neuroscience, along with professors of medicine, to spearhead technological innovations in rehabilitative medical treatment. At any given time, the Rehabilitation Institute of Chicago houses 20 to 25 spinal cord injury patients and receives patients who have undergone acute care in emergency hospitals throughout the Midwest. The Institute is one of 14 “model centers” for the early treatment of spinal cord injury patients throughout the country. Dr. Rymer has worked at the Institute since 1989.

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Chet Cooper: Is it something of a challenge for a center like this to juggle research and treatment? W. Zev Rymer: It can be. The early days are especially difficult for people with acute spinal cord injuries, and it’s not necessarily an opportune time for research, except on things that improve the early outcomes. Those things tend to be done by neurosurgery, rather than by rehabilitation. Often we won’t see a person with a spinal cord injury until maybe four to six weeks after his initial incident. Considering the course of events after spinal cord injuries, that’s still a very difficult time for the injured person and his family. A lot of our early interventions are specially focused on the patient’s adaptation to new life needs, getting him thinking about being at home and in the workplace. Many of our research projects tend to

focus on later in the course of events, often not until nearly the end of treatment at the rehabilitation center, or even beyond. For example, if someone has had multiple fractures or a chest injury, that might delay doing research on mobility recovery.

trol. What we’ve seen in people who are exposed to Lokomat training over a period of several weeks to months is progressive recovery of their walking ability.

A lot of what we do here is based on outpatient testing, and sometimes it doesn’t even begin until many, many months after care. I say all of this because there is some notion we may have a greater effect with our experimental treatments if we intervened earlier.

Rymer: In some respects, yes. Manual therapy does have the advantage of allowing a therapist to adjust the level of assistance to optimize intensity of the effort the injured person generates. That kind of pushes the injured person to be continuously active and to approach the limits of his strength and endurance.

Cooper: Can you discuss some of the work going on with robotic interventions in the world of spinal cord injuries? Rymer: We have a number of projects focusing on spinal cord injury care, in general, and specifically with respect to the application of robotics. George Hornby, who is a neuroscientist and a physical therapy professor, directs one of our labs that specializes in spinal cord injury research. He’s interested in methods of improving locomotion in patients who have had incomplete spinal cord injuries: patients fortunate enough not to have suffered total destruction of the spinal cord from which there can be no recovery of function. George has been testing robotic trainers of different kinds. The main one we’ve been using is called the Lokomat, which has been in the United States since 2001 and is now quite well-known. Cooper: How does the Lokomat work? Rymer: It was designed and developed in Zurich, in what’s called a paraplegia hospital. The Rehabilitation Institute of Chicago was one of the first places to have one, and we were among its earlier adopters in North America. The idea behind the robotic trainer is that it uses what’s called an “exoskeleton”: metal limbs attached to the legs of a person with a spinal cord injury. The person is suspended above a treadmill with counterweights that offset the need for weight bearing. This is an important feature, especially early on, when many people who suffer incomplete spinal cord injuries can’t bear their own weight. The Lokomat takes the person’s limbs through programmed walking movements over the treadmill. Meanwhile, the Lokomat also collects data about what’s happening during this walking exercise so we can measure things like distance, duration, number of steps, and amount of weight borne by the patient. We can also poll the electrical activity of the different muscles and even measure metabolic factors, like oxygen consumption, during this process. The Lokomat allows us to provide better feedback about different features of movement, especially as a person is recovering and developing the ability for voluntary con-

Cooper: So this is better than working with therapists?

The downside of the manual method, however, is that it requires a large number of therapists. A 45 minute training session, for somebody who’s got weakness in both legs, requires two therapists on each side. And one therapist can last maybe 10 minutes. The effort required by the therapists to move the patient’s leg is exhausting, especially if the person’s limbs are spastic. Spasticity is increased stiffness that develops in muscles that have lost input from nerves, such as that which occurs in the legs after spinal cord injury. In the end, finding the expense and logistics for four therapists to work on one patient during a 45 minute training session is impractical. Manual therapy is at least comparable to the robot, but the robot can do on its own what is required of four therapists. Thus the robot has compelling practical advantages. Moreover, there is a safety benefit to therapists because the manual method often causes back injuries, since it requires they lie next to the treadmill and move the patient’s limbs. Cooper: So there are pluses and minuses to both approaches. Rymer: The problems with the machine are now being addressed. One of those problems was that the machine didn’t “know” exactly what a person was trying to do within it. Even though it has force and motion sensors, the Lokomat was initially programmed in such a way that it would replicate the movement task independently of what the person was trying to do. In contrast, a therapist can sense when somebody is trying to walk on his own, and can assist as needed. So what the new control algorithms for this robotic system do is provide more sensible control that provides help only when it’s needed. It’s a strategy that’s being referred to as “corroborative control.” I think that’s a much more promising strategy, overall. Cooper: Are there any other hurdles for the Lokomat? Rymer: The other constraints of the standard Lokomat are cost and technical complexity. The device costs, depending on how it’s set up, somewhere between $250,000 and $350,000. A lot of places are not able to spend that kind of money on therapeutic devices for ABILITY 33

rehabilitation. And indeed, in most hospitals that have the machine, it has not been funded as a capital equipment item. It’s usually funded as a donation or a gift from a philanthropic source of some kind. In addition, the service contract for maintenance of the device costs $12,000 to $15,000 a year. Most facilities can’t afford that. Also, while the Lokomat is sophisticated, it turns out human ambulation, walking, is much more complex. The machine is able only to assist with movement of the legs forward and backward, but walking involves swinging the legs out, moving the pelvis side to side, and rotating the body. Nor does the Lokomat help with other vital components of ambulation, such as the ability to maintain posture and balance. Nonetheless, I believe it’s still very helpful, and I think in early stages of spinal cord injury, in particular, it’s been especially valuable. I think the group in Zurich that designed it deserves a lot of credit. Cooper: What other devices are being tested? Rymer: We have a device called a KineAssist, designed by a Northwestern University start-up called KineaDesign. KineAssist wasn’t intended to pick up where the Lokomat leaves off, but operationally that’s what it does. It carries a person safely as he walks over ground, and it has a frame that supports a person in a harness, allowing him to move his legs freely. The advantage of the KineAssist is that it allows for motion of pelvis and body axis and trunk. This actually allows a person to walk up and down slopes, to climb steps, to sit or stand— lots of things that are important for daily living. So the KineAssist is the next step in the retraining of walking. Cooper: What patients does it primarily benefit? Rymer: It’s mainly been used in the early period following a stroke. It’s not yet a commercial device, but I think it should prove useful in spinal cord injury cases. It brings one special benefit: safety. When people with spinal cord injuries begin to walk, they’re very unstable and need therapists on both sides to support them. That, in turn, limits the freedom of the patient to test the limits of his performance. This machine adds complete safety so people cannot fall. If they slip, the KineAssist allows them, essentially, to roll forwards and remain suspended in the harness. We have several other projects here, linked broadly to walking via robotic systems. One of the big hazards of spinal cord injury is loss of bone mass. Though it’s not possible to completely prevent that from happening, we’ve found we may be able to slow down or even stop it before there’s been too much loss of bone density. Because of this, bone fractures are a big problem for people dealing with spinal cord injuries. By using progressive weight-bearing, as we do in the 34

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Lokomat, we may be able to assist in preservation of bone mass, if not outright restoration of bone mass that’s been lost. We have a study running here, funded by the Department of Defense, on restoration of bone mass after spinal cord injury. Our lead investigator, a dermatologist named Tom Schnitzer, has been using walking studies—coupled with different hormonal and drug treatments—to improve bone health after spinal cord injury. Thomas Chappell: That’s pretty crucial, isn’t it? The problems of bone mass reduction, muscle atrophy, downregulation of the vascular system—all life-changing issues. Is there a way to light additional fire under some of these developments, to get them out to people sooner? Rymer: The best solution—in terms of preservation of bone mass, vasculature, muscle, and skin—is not likely to be robotic. It may amount to standing or sitting with a vibrating foot plate which stimulates iron preservation, coupled with biophosphonates and some of these antiosteoporosis drugs. I don’t think there are enough robots to be widely available to everybody with a spinal cord injury who might need them. I wish I could say that it’s all going to happen more quickly, but the Lokomat is complicated and expensive. With only 300 of these things existing, worldwide, they’re only being applied to a tiny, tiny fraction of all of the people who might need them. We keep hearing that mass production methods are lowering costs, but with respect to rehabilitation technology, in general, that hasn’t happened. We don’t have the scale of production, we don’t have the uniformity of need. So that principle might be true of medicine, in general, but in the rehab world, it just hasn’t worked. Over the 15 years in which the Lokomat has been in place, its price has stayed steady or dropped, slightly. Everything’s still too expensive. I think as health care cost issues escalate, these sorts of expensive devices are going to be harder and harder to fund. The onus is on us to come up with things that are essentially as effective as the more expensive options. Maybe they won’t be as flexible in terms of providing many functions, but they should provide appropriate functions in a targeted manner. They can be designed and constructed more simply. Cooper: Are there any projects you’re particularly excited about that are still in the early stages? We’re doing some pilot work on a system called Armeo, for restoration of upper-limb function in people with quadriplegia. It supports the weight of the upper extremity and allows people to use residual function to train themselves to do voluntary tasks while interacting with a series of computer games designed to improve typical daily activities. It’s a bit more interesting than a lot of therapy routines, and we’re hopeful that intensive practice will help both strengthen muscles and improve voluntary coordination in people with spinal cord injury.

A rehabilitation session using the KineAssist

Cooper: It works as a form of biofeedback? Rymer: Indirectly. Biofeedback usually means that there’s a biological signal being given that somebody’s being asked to increase. In contrast, this is a game that says, “Can I move? Can I do a task? Can I move kitchen utensils around? Can I play other kinds of games?” These are games, not unlike kids’ games, but they’re targeting functions that are relevant and useful for somebody who has impairment of upper-limb and hand function. We have a lab here dedicated to restoration of hand function, specifically. Stroke survivors can’t extend the wrist or open the hand, so there are a lot of devices being developed to help them do those things. Most of the work we’ve done has been in the stroke arena. We have a big stroke robotics center that’s uniquely focused on stroke. Stroke survivors are a more homogeneous population with which to work, but all the things we’ve learned from stroke robotics are also likely to be relevant to management of people with spinal cord injuries. There are other robotic devices we’ve started to work on testing, designed for complete spinal cord injury. One of them is a device called ReWalk, developed by a company called Argo. We have not yet used the system here, although we hope to. This device was designed in Israel, by a paratrooper who had sustained a spinal cord injury. Originally he was just using it for himself. It’s a very lightweight, powered exoskeleton that can be car-

ried. It works quite nicely for people who don’t have a lot of spasticity and who have incomplete spinal cord injuries. You have to use crutches for upper extremity control and balance, but the machine—as you tilt forward, to begin walking—allows the motors to bend the hip and knee, one side at a time, to produce relatively natural motion. I saw the machine in action in New York, about six months ago. A trained user, an Israeli soldier who sustained an injury in an accident, walked the streets of Manhattan with us for about an hour. He was able to go up and down stairs and do all kinds of things. He’s exceptional. He’s relatively lightweight, very strong and agile, well-trained, has good upper extremity and trunk control. I don’t know if one could necessarily expect that level of performance from other users, but I thought the machine was excellent. Chappell: How did he balance? Rymer: He used crutches for balance, but the device’s motors are powered by a battery pack that sits on his back. About 15 pounds or so. Cooper: There’s a pretty good YouTube video for the product. Rymer: Yeah. It’s been on ABC and Good Morning, America. I’ve been trying to get the developers to work with me to test it in people with incomplete spinal cord ABILITY 35

Hand rehabilitation using the j-Glove

injury. I’m hopeful that we can do that. There are potential liability issues: someone’s going to fall in the ReWalk device, at some point. I think it’s going to be a tough road to make this a commercial product. But it’s good engineering: top-notch, well-designed, lightweight, very effective. I’ve been talking to the inventor of this for nearly 10 years, and for a while I wasn’t convinced it was ready for primetime. Now I think it is. It’s an elegant product. I think the whole idea of using these portable exoskeletons to help people walk is going to become the center of attention in the field of rehabilitation in the next 10 years.

works quite well, but I think it will remain primarily in large hospitals and academic centers. For a long time, rehabilitation science wasn’t really a productive field, but it’s highly productive now. As we get into stem cells and other therapies that will potentially make radical changes in recovery from spinal cord injury, I think there will be more and more room for translational work*—which is exactly the kind of work that we do. ric.org

The final piece of the robot story is an interesting one, but I don’t know if it’s going to apply to the world of spinal cord injury. Honda Motorcar Company has designed the DiGORO robot systems. I don’t know if you’ve seen them on the Internet? Cooper: Yes, I think so. Rymer: They actually were designed for use by frail people: a way for people to enhance their stamina and to walk greater distances. The Honda machine was originally designed for the Japanese elderly, but Honda started a study with us to see if we can use it in a different population, including spinal cord injury patients. It’s kind of like the ReWalk, but it’s smaller and lighter and less powerful. The Honda device would be used to extend walking ability for somebody with very mild impairment, whereas ReWalk is designed for those with severe injuries. We’ve tested the Honda device with some spinal cordinjured people, and their walking did improve a little bit. There seems to be a range of robotic systems evolving. Some of them might find a market and long-term roles in therapy and management. Others, I’m not sure. For example, the Lokomat is expensive and complex, and it 36

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*Note from Dr. Chappell: “Translational work” refers to a relatively new concept in medical science. For most of the history of modern medicine, scientific researchers (PhDs) and their work were mostly separated from MDs and the treatment of patients. Historically, there was even some animosity between the two camps, mostly because doctors tend to get paid better than scientists. My graduate school professor, a PhD, knew I intended to go to medical school. He used to tease me by saying, “Before we PhDs came along all you MDs could do was wave monkey skulls at your patients!” Yet, somehow, we have managed to advance medicine based on scientific endeavor. In many ways, however, the process is arduous. In recent years, scientists, and doctors interested in research, have more closely collaborated, even to the extent that it is no longer uncommon for people to hold both an MD and a PhD. Research involving close collaboration between laboratory or “basic science” research and actual treatment of patients is called “translational” research to connote proficient translation of information from scientific research into better treatment of disease.

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n her compelling new memoir, The Dark Side of Innocence, best-selling author Terri Cheney explores the navigation of her childhood and teenage years. ABILITY’s Molly Mackin spoke with Cheney about her book, her inspiration, and her continuing journey with bipolar disorder. Molly Mackin: I really loved your book and its unique voice. Where did you grow up?

Cheney: I had to read Walden Pond, by Henry David Thoreau. That was horrible. Mackin: What were your preferred reading selections, growing up?

Terri Cheney: Thank you! I’m from Ontario, California. There’s no reason you should know it except it has a big airport. I tried to get away from it as soon as possible. It’s all right, it’s just very suburban. It was primarily middle-class and upper-middle class. I’m sure it had its pockets of lower-middle-class, but I never saw them.

Cheney: I went into a Jane Austen phase in around fifth or sixth grade. I loved everything about that time and the society of manners and the way that everything seemed to be laid out according to etiquette and rules. I found that so comfortable. It seemed so dissimilar to behaviors in the ‘60s and ‘70s, when there were no rules left and everything became chaos. I liked the idea that there was once a well-mannered society.

Mackin: In the memoir, it’s clear you were an extremely smart kid. I’m curious as to how you developed so much knowledge at such a young age.

Mackin: Did you ever place yourself there, in your imagination? In the world of Jane Austen?

Cheney: The difference between me and many of my friends was that I went to a Catholic school that was very advanced. I realize now, looking back on it, that the nuns were very encouraging there, but they were also very strict. As far back as I can remember, I was reading quite advanced things. My vocabulary was always a little advanced and my teachers were great. They would just let me go read. I actually didn’t have to do the schoolwork. I had several teachers who allowed things like that.

Mackin: I remember reading about that in the book and feeling really envious.

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Cheney: All the time. Mackin: Do you think there would be room for someone who was confronting something like bipolar disease in that society? Cheney: What an interesting question! I think so, because there have always been a lot of bipolar artists and creative types throughout the centuries, so there must have been room for them. But I think they would have been looked

on as eccentric rule-breakers and outside the norm. Mackin: I think a lot of people wish or imagine they are somewhere else, without giving much thought to what the difficulties of their situation might be. Cheney: You know what? The other place I really wanted to be was 1920s Paris. I wanted to be an expatriate. I would have fit in there. I would have been perfect there.

Cheney: I didn’t for quite a long time, although for about 10 years I’d have bouts of depression. I wasn’t suicidal, and the bouts wouldn’t last as long as they used to, and I wouldn’t really get manic. But then, strangely enough, this past year I had a really bad bout of mania and depression—it just happened out of the blue. Mackin: Do you take any medication?

Mackin: Because everyone was miserable!

Cheney: I take, all told, about 25 pills a day, for different conditions. It’s a lot to keep track of.

Cheney: (laughs) Yeah.

Mackin: What other conditions do you take pills for?

Mackin: And drank a lot.

Cheney: I had colon surgery years ago. I have to take medication for that. A lot of people with bipolar disorder have trouble with their thyroid, or with depression, and have sleep issues, so I take medications for all of those issues.

Cheney: Mm-hmm. Or wanted to be outside the norm. Mackin: Did you read much from that era of writing? Cheney: I read a lot of F. Scott Fitzgerald and Ernest Hemingway. Fitzgerald and Austen were huge influences on me. I loved the “social observation” style: writers who sat back and watched society and how it worked, and took it apart like an instrument. And I loved the weird rhythm of Fitzgerald’s writing. I could read his work all day. It was so soothing. He could express things so beautifully. His work gave me hope for the world. Mackin: Do you consider yourself an artist? Cheney: Now I do. It took me a while, though. I’ve joined two writing groups, and I go every week, religiously. I think it’s important to have those communities. In creating the art, you’re alone. But in sharing the art and having an audience, you’re never alone. When you’re bipolar you’re alone a lot. I think that lends itself to being creative. You’re alone a lot in your own head. You’re feeling different than the rest of the world. I think a lot of artists feel they’re strange or different or unusual in some way. Mackin: Do you have any groups in which you can talk freely about bipolar disorder? Cheney: I actually facilitate a group at UCLA every week, on Tuesdays. It’s nominally a twelve-step group, but it’s really for anybody who’s interested in mental health recovery. It’s a wonderful place to hear people talk about their experiences. The humor is very black and edgy, as you can imagine, but it’s nice to be able to go in and talk about what’s going on and have other people around you who understand. Mackin: In the book, you write about having “episodes,” or long periods in which you wouldn’t get out of bed. Do you still have episodes?

Mackin: You take sleeping pills? Cheney: I take different kinds of sleeping agents, which don’t really work that well. I don’t tend to sleep very much. My doctor says it’s part of the bipolar disorder. I sleep in cycles, through the night. Last night, I slept about three to four hours, but it’s interrupted. I wake up and fall asleep and wake up again. I can’t imagine what it would be like to sleep eight hours straight. I get so jealous when people complain, “I only had seven hours last night.” (laughs) I can’t believe it! Mackin: Sleep is so weird. Cheney: I know! I keep thinking there must be all of these dreams that have backlogged from my not sleeping. Then again, maybe those dreams have expressed themselves in my work. I think dreams mean something. My dreams used to be easily interpreted. They’d be very literal. It was helpful. Mackin: You started each chapter of your book with a poem—the first chapters with poems you wrote at your youngest, and continuing up until poems you wrote when you’d ended high school. Most of them were very dark for such a young person. Cheney: I know. When I went home and found all of the poems in my mother’s cupboard, I was so shocked by how a child could think that much about death and despair. I don’t think I ever wrote a happy poem. Mackin: Are your parents still alive? Cheney: My mother’s still alive. She’s 84. My father died in 1997. Mackin: Did you ever ask them, from an adult perspective, ABILITY 39

about what they went through during your childhood?

Mackin: I didn’t even know what a Vassar girl was.

Cheney: I never got to ask my father, and my mother denies having known anything was wrong. She always says a couple of things: that she worked all the time, so she wasn’t home a lot, and that my grades were good. I had gotten all these awards and honors. I was always scholastically overachieving, and so she said she never knew anything was wrong.

Cheney: Well, you didn’t grow up with old movies, and old books. I liked old books. In the old books, a Vassar girl was this iconic thing.

It doesn’t surprise me. Think about it. That would be a very hard thing for her to admit: “Yes, I knew something was wrong, and I didn’t get you help.” I’m not surprised she says she never saw anything wrong.

Cheney: But once you got into the school, weren’t you completely blown away by it?

Mackin: You write that the closest person to you was your father, but you also say he was only really home in the evenings.

Cheney: Oh, shame on you! They would have loved you there. I have never seen any place so beautiful in my life. It has a music to it. The most gorgeous campus, all wooded and planted with flowers—different flowers for the seasons.

Cheney: Right. And he just adored my poetry. The fact that I was writing about death didn’t seem to faze him in the least. Maybe he thought poetry was supposed to be that way. Mackin: Maybe he was a closeted Emily Dickinson fan. Cheney: (laughs) Somehow I doubt it. Mackin: You describe him as someone who really encouraged your scholastic calling. Cheney: He loved my awards more than I did. He just adored that stuff. If he were alive today, he’d be here on the couch just glowing at the fact that my book is coming out. Perhaps he was a frustrated writer himself, but I never got that sense from him. He was a frustrated something. He really enjoyed watching me get the attention that maybe he never got. Mackin: Was he conventionally educated? Cheney: He went to the University of Chicago for a couple of years, before the war. He never finished college, but he was off-the-chart smart. He read all the time. Mackin: Even in your childhood?

Mackin: I actually dropped out.

Mackin: I went there because I fell in love with the campus. Cheney: Same here. I chose Vassar over every other college because the daffodils were in bloom that day. And I think they were really open to eccentricity. I felt like I fit right in. Mackin: Did you make friends there? Cheney: Yeah. I didn’t make many friends that I kept, but I had some friends. I haven’t really stayed in touch. I did go back to one of my reunions: the twenty-fifth. I did stay in touch with some of my ex-boyfriends. I think I really learned how to write while riding that old train from Poughkeepsie. You have to go through Peekskill, all those places. The rhythm of the wheels got into my head, and I started writing poetry to the sound of the wheels. I still hear it, sometimes, when I write—just a particular rhythm. So soothing. Mackin: How did your mania manifest when you became an adult? Was it different than it was when you were a kid?

Cheney: Especially in my childhood. First thing in the morning, no matter how early it was, I’d get out of bed and go run and get into bed with him and he’d read a story. He was never too busy to read to me.

Cheney: A lot of recklessness, sex, and excessive spending. Those were the usual ways.

Mackin: You attended Vassar College, which was where I went to school, as well. In the book you describe really wanting to be a Vassar girl. That was different from my experience.

Cheney: My judgment was really impaired. I would pick up men I didn’t know and have one-night-stands. On the one hand, my condition was helpful when I was a lawyer, because I could be very energetic and charismatic and productive. I’d work for days without stopping and churn out all of this material. That part was really good. But I didn’t have good judgment.

Cheney: You didn’t want to be a Vassar girl? You’re kidding me. 40

Mackin: I read J.D. Salinger, and also The Bell Jar by Sylvia Plath. I remember Vassar girls mentioned in those, but I never had that connection.

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Mackin: What sort of recklessness are we talking about?

At one point, during a severe manic episode, I spent my entire savings. I went up the coast to a place called the Coast Ranch, in Big Sur, and I just stayed there until all my savings were gone. I had so much fun, but I came home and I had no money. I did pretty much everything a manic person would do. I was really out of control. Also, I hurt people I loved. There’s a part in my book about a man with whom I was very much in love. I was drinking and manic and I hit him across the face. I would never in a million years do that—I just wasn’t myself. And that sort of behavior was such a sharp contrast to how I acted when I was depressed. People who had seen me one way would see me another way, and I don’t know how they made sense of who I was. I was two different people. Mackin: Do you do the same kind of work now that you were doing then? Cheney: The legal work? No. I don’t practice law any more. Since the time I wrote Manic, I’m pretty much living off of my writing. I hope I’ll never have to go back to practicing law. I never wanted to be a lawyer. I never liked it. It was glamorous, because I was an entertainment litigator, but it was very stressful. The deadlines would really trigger episodes. At one point, there was an L.A. Times article written about me in which I talked about Hollywood being inherently bipolar. The speed, the pace, just the intensity of the environment. It’s very cyclical, very up-and-down, very bipolar. I did a lot of work in music copyright and, boy, that’s a scary field. It’s very exciting, but scary.

important thing in my life is maintaining my stability and nurturing my writing. Those don’t leave a whole lot of room for somebody else’s stuff. It’s really hard. But on the good side, my relationships with people are better than they’ve ever been. I think “coming out of the closet” with Manic was a huge step.

Mackin: What are your romantic relationships like now? Mackin: Did people in your life know much about your bipolar disorder?

Cheney: They’re complicated. I do see a couple of people, but even though they’ve known me for a long time, I don’t have a primary relationship. I find them hard. I like being alone. I’m not married and I don’t know that I ever wanted to be married. It’s just easier for me as an artist and as a person to be alone a lot. I’ve been surprised by the amount of friendships I’ve gleaned over the past years, but that “great love” for whom I’m number one is not there. I haven’t found that.

Cheney: A couple of people did. Most didn’t. I got a lot of emails after Manic, many from people with whom I had worked for years, some from people with whom I’d gone to school. They all said the same kind of thing: “We always knew there was something wrong with you, but we weren’t quite sure what it was.” I don’t think that was meant cruelly, either.

Mackin: Is it something you want?

Mackin: People felt as if you had a secret?

Cheney: If I could find someone who can understand my pathology, yes. I think I’d like that.

Cheney: Exactly. I think there was a lot of relief after they knew what it was. I think it then became easier for them to be friends with me. I didn’t know what would happen as a result of Manic, and I was so scared. But the outpouring of love and compassion was extraordinary. I got hundreds of thousands of emails from all over the world. I never expected anything like that.

Mackin: And the people you’re seeing now, they don’t understand your situation? Cheney: They do understand it. They just want more than I can give them. There’s an undercurrent of frustration, at the moment, in my relationships. The most

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celebrated model, actress, and entrepreneur, today Kathy Ireland is CEO of Kathy Ireland Worldwide (KIWW), an enterprise worth over $1.5 billion that offers thousands of products for families and busy mothers. Though Ireland says her modeling days are long behind her, the beautiful mother of three is by no means coasting on her centerfold success. She’s the author of several inspirational books, holds an honorary master’s of fine arts degree from American Intercontinental University’s School of Design, and has appeared on Fairchild Publications’ list of the 50 Most Influential People in Fashion.

Ireland squeezed in a meeting with ABILITY’s Chet Cooper and Molly Mackin at Los Angeles International Airport, just after having returned from a meeting with her jewelry line partners in Oregon.

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Chet Cooper: Did you know we almost did an article on you, in the early ‘90’s, when you were getting started? Kathy Ireland: Oh, really? Cooper: Somebody on your team had approached us about doing an interview, and we said, “Sure, that would be great!” They then asked, “How much will ABILITY pay for Kathy to be on the cover?” At that time, they were still used to you being paid to be on covers. Ireland: So it must have been a modeling agency or something like that? Cooper: I don’t remember who it was. But after all these years, it’s great to meet you and see how much you’ve been doing! Our magazine started in 1990 and you started, basically, in ‘93. Good for you! Ireland: You, too! My goodness. It’s wonderful. Cooper: Most of the interviews I’ve read about you mention you got your start with a paper route? But even before that, didn’t you sell seashells or something? When you were four? Ireland: (laughs) Actually, I sold rocks. I grew up on a street called Rock Creek Road. We had lots of rocks in the neighborhood, and my sister and I would collect them, paint them, load up our wagon, and go door to door and sell them.

Ireland: I think I definitely entered modeling as a businessperson. I always worked, and modeling was never a part of my plan. It was just an opportunity that came my way, and I felt like if I didn’t explore it, I might regret that. I thought maybe I could save some money for college or save money to start a business, but I never anticipated my modeling career would go on as long as it did. The entire time I was working in that business, I was grateful, but I knew I belonged on the other side of the lens. I tried and failed at so many businesses. If I had succeeded sooner, my modeling career would have ended sooner. But it took me a while to start our brand. Cooper: I’ve heard stories of people’s lives in which certain things didn’t work out for them, but they learned valueable lessons from their mistakes. Your business focuses on mothers, and, being one yourself, I’m wondering how you feel about the notion that we should allow our children to “fail” so that they can learn. Ireland: Oh, yeah. Ideally, you provide a safe environment in which your children can fail. A place for them to try and to fall down and to pick themselves up. You don’t always want to pick them up, yourself, but you want them to know that you’re there to love them and care for them and protect them. And ultimately you’re there to empower them to get up and keep on going and persevere, and not give up. You don’t want to rob them of their motivation.

Cooper: Door to door? Mackin: What are your kids like? Ireland: Yeah. Our poor neighbors! Molly Mackin: You sold rocks as pets? Ireland: (laughs) Not pets, no, but they were functional. Some people used them as paperweights or whatever. My granny had one. I painted a big flower on it and she carried it in her purse. She had my rock and her knitting needles, and she had such a stride, such confidence, my cute little granny. Nobody was going to mess with her. This was before mace or any of that, but she always told me, “you poke them in the ankles with the knitting needle and hit them in the head with the rock.” Cooper: If I understand this correctly, you were selling weapons at age four? Ireland: Well, I looked at them more as “design artwork.” (laughs) The weapon use was Granny’s choice. Cooper: You sound as if you were an entrepreneurial type, right from the beginning. I imagine because of your looks you got into modeling, but your brain was probably always working behind the scenes, working on entrepreneurial concepts.

Ireland: Our kids are really awesome. I’m biased, of course. They’re each such unique personalities. Our son Eric is 16, Lily’s 12, and Chloe is seven. All three of them are pretty strong spirits and very different, too, at the same time. Cooper: Are any of them selling anything door-to-door? Ireland: No. (laughs) Our 16 year-old wants to be a pastor, he says. He’s got a passion for going on mission trips. He just got back from a feeding program in Israel. It’s going to be really interesting to see what Lily wants to do. She is probably the most thoughtful person I know. She really thinks about others. She loves music. They’re great kids. Chloe is spunky and really funny and likes to play in the mud. And all three of our kids play guitar and sing. I love that. My favorite time of night is locking up the house and going to bed, because that’s when they’re all in their rooms singing, independently, and there are all these different songs going off. Cooper: Do you have a musical background? ABILITY 45

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Ireland: No, no. They rebelled. I don’t have it at all, but they do.

Ireland: There are about 50. Cooper: You’ve grown.

Cooper: Would you let any of your kids do any modeling? Ireland: I certainly wouldn’t encourage it. I saw a lot of people hurt by that industry. I never felt comfortable, myself, earning my paycheck based on how someone else perceived that I looked. It didn’t feel secure. So far, the issue hasn’t really come up with my kids. I would be surprised if modeling were something they would want to do. I’d have a real challenge if they wanted to do it while they are still kids. I think that would be tough. Cooper: When did you start? Ireland: I started when I was 17 and went to New York for the summer. But then I came back home and I finished high school with my class and I started modeling again when I was 18. And that was still pretty young. I wouldn’t recommend it. Cooper: I read you have several different homes and offices, including a place in Israel. What are you up to out there? Ireland: Our skin care products are manufactured over there, from the Dead Sea, which is an amazing place. It’s the lowest point on earth, and the minerals there are so rich. It’s just beautiful. You float as you would if you were in outer space. It’s pretty miraculous. I love it. We do have team members over there, and we’re so grateful to be able to give back, which is a big part of our company philosophy. If we’re utilizing elements from the Dead Sea, we figure we’ve got to give back to this place. So we look for nonprofits with which to work. We do that wherever we’re fortunate enough to conduct business. Cooper: I met with some scientists in Israel who work with children with cerebral palsy. The kids are also working with scientists in the Palestinian area. The goal is to get these kids to walk again, regardless of where they are from. Ireland: Isn’t that amazing? We were over in Israel last year, doing some work with Sheba Medical Center, which cares for Jewish and Palestinian kids, side by side. Kids are just amazing. They love each other and don’t ask who a person is. Everybody gets treated equally. Cooper: Have you done any other traveling in the Middle East? Ireland: Not really, no. Cooper: How many countries are you marketing your products in now?

Ireland: I’m proud of it. When others were spending money on maybe clothes and cars, I was investing in people. In a team. I always loved sports, growing up, and I loved the idea of working together with people. I know my strengths and I know my weaknesses. I think sometimes women, in particular, have a hard time asking for help. But there’s so much we can accomplish when we work together for a common goal. Most of us, at my company, have been together for over 20 years now. It’s been such a journey. The retail landscape is really starting to look a lot like Hollywood. Nobody was offering me endorsements, so we started our brand from the ground up, with socks. People said, “It’s stupid. You can’t start a brand with a pair of socks!” But we wanted something basic, just to show what our team could bring as far as innovation, design, creativity. We knew if women embraced our socks we might be on to something. But there was so much rejection in the beginning. And there still is, which is okay. It’s all part of doing business. I always say, if you’re not getting rejected, you’re not trying hard enough. My experience as a model was really helpful in that respect, because there’s so much rejection in that industry, so it really didn’t bother me when doors slammed in our faces. Cooper: It’s hard to imagine you experiencing much rejection. Ireland: Oh, yeah, it’s just part of life. You can’t be so reactive to what goes on around you. See if there’s something you can learn from the experience. Sometimes there’s a positive, constructive message. It might be in an ugly package, but there might be something useful and helpful. Sometimes it’s just noise and you’ve got to turn down the volume and move forward and ask, “Can I learn something and do better next time?” I remember my first day on my newspaper route, back when I was eleven. I had wanted this route so badly. I had 101 newspapers to deliver, and my first day happened to be New Year’s Day. The papers were extrathick, I was really scrawny, and I couldn’t even lift the sacks. I had to crawl on my belly, stick my head through the sack, and try to stand up. I’d get rid of the papers in the front and the weight from the back would choke me. I’d fall off my bike. Anyway, I’m pedaling up this steep hill and I see this man, standing at the end of his driveway. His face is all red and his neck is all strained and he looks really upset. As I approach him, I realize he’s angry with me. He just starts yelling: “What are you doing here? This is a boy’s ABILITY 47

job! You have no business being here! You’re never going to last!” Simply because I was a girl. Cooper: Did you take that as a challenge, internally? Ireland: I think so. Just because someone says you can’t do something doesn’t mean you can’t do it. A friend of mine, Nick Vujicic—he’s a young, Australian guy—was born with no arms and no legs. Cooper: I think I’ve heard of him. Doesn’t he do a lot of talks, around the world? Ireland: He does. He goes into developing countries where people who are born differently are just discarded. So to see him go to India and other countries, to see him onstage, to see him happy and productive and helping people, is truly life-changing. It’s really cool.

Cooper: I have to say, I’m impressed by the jewelry you’re wearing. I don’t know who’s doing the design with you, but it’s really nice.

Cooper: When you set out to start your business, how did you find the right team?

Ireland: Thank you! Our manufacturing partners have factories both abroad and in the States. Some in India, in different parts of Asia. They’re good people, and they make really high-quality products.

Ireland: I was fortunate, for sure! Also, I think I was discerning. I really looked for people who weren’t going to agree on everything but who, when it came to core values, had a similar foundation. You want to work with people who will do business the way it needs to be done, with integrity, without solely being motivated by a dollar. Our employees need to be motivated by a need to do the right thing. I found people who shared those values, and I think that’s why it’s worked. I’m really grateful to our customers. For the most part, our customers are women, but there are a lot of guys out there, too, and the number is growing. I think that’s because we’re in the arena of bridal products now, and I think guys in that market look for somebody older they can trust. I’m grateful to so many women for turning down the noise of stereotyping and embracing our brand. Cooper: I read something you wrote about your niece. She has Down’s syndrome? Ireland: I wrote an article about my sister Cynthia and her daughter, Polly. Polly is eight months old and was born with Down’s syndrome, yes. Cooper: Have you talked to many parents of kids with Down’s syndrome? I know you’ve worked with the Special Olympics for years. Ireland: When I was pregnant with our second child, Lily, I had a false positive. The doctors had told me my daughter was going to have Down’s syndrome, but it turned out she didn’t. I just really believe God doesn’t make mistakes. However our child was going to be, we were going to love her and she was going to be great. During that pregnancy I found I was really comfortable 48

with not knowing the outcome. I was familiar with the work of Eunice Kennedy Shriver and the Special Olympics, and I found that inspiring. Here was this woman, in a male-dominated family, who started the Special Olympics in her backyard and didn’t use any family money. During that time, people who had any sorts of differences were just shut away. Nobody wanted to see them or deal with them. What Eunice Kennedy did was bring them to the Olympics and onto the world stage and force the world to look at them and to acknowledge them and to see their abilities. That really encouraged me throughout my pregnancy. I know my niece Polly is going to have a great life.

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Cooper: How are you able to keep track of all the products you have? Ireland: Well, there are about 45,000, so, that’s quite a bit. It’s really been humbling. I don’t just put my name on the products, because I really give my heart to everything. We always have team members traveling, bringing inspiration, collecting raw materials. Our mission really began with finding solutions for families, especially for busy moms. We’ve gradually expanded that objective into an interest in finding solutions for people in love, through our bridal products. We have design studios that have become gorgeous estates for weddings, and brides are loving them. Another of our missions is a search for solutions for people in business. It’s been such a privilege to be asked to speak to groups throughout the country, throughout the world: a lot of small business owners, a lot of female CEOs. That’s exciting, particularly, because when I first started, I wasn’t seeing a lot of women in powerful positions. Seeing that change is encouraging. Cooper: How does your company help these businesswomen out? Ireland: We design specific furniture for offices. We have two manufacturing partners who service in that area. For home office products, we have Kathy Ireland Home by Martin Furniture. This is our high-end price point. It’s just beautiful, exquisite craftsmanship. The CEO of that company, Gil Martin, started out by building furniture in his garage, and he also happens to be a rocket scientist. He’s a really smart guy. My first home office was my kitchen table. So it’s fun to figure out how people are living and how we can make

Kathy Ireland and family walk through their neighborhood. We believe the children are pulling luggage full of rocks. Please post your comments about what you think is in the luggage at Facebook.com/abilitymagazine

our products conducive to working in those spaces. We have another partner, called Kathy Ireland Office by Bush. That partnership is centered on ready-to-assemble furniture. This is our opening price point. It’s an exquisite value. It’s just amazing.

them all to be smooth. Safety is a huge focal point for us, especially in respect to children or to customers with disabilities. You don’t want someone to be hurt. We opt for dime radii on our tables, on our case goods, rather than those really sharp corners that can easily cause accidents and hurt people.

Cooper: And Bush is the manufacturer?

Cooper: Do you plan to sell your products online?

Ireland: Right. It is so easy to assemble these pieces. I mean, I could never even figure out LEGOs with our son—that was so complicated for me—but I’ve assembled these pieces.

Ireland: We do sell online, but not through our website. Our site is designed to be just a communication channel, a thank you for people who have embraced our brand—and a place where they can receive information on fashion, home, family, all of that.

Cooper: And they’re shipped to the customer in a box? Ireland: Yeah. You really save. It’s a great value for people living in smaller spaces. Cooper: So these are ideal pieces for kitchen offices, home offices—? Ireland: These pieces could be for a home, but they’re also for businesses. If somebody’s starting a business or adding to it, these pieces are worth considering because they’re designed so that you can grow and add on.

Cooper: Are you still involved with The Dream Foundation, out in Santa Barbara? Ireland: We support them, yeah. I had the privilege of working closely with them when they were in their beginning stages. They do really great work, and are the only national organization that grants wishes to adults who are facing life’s end. We’re also involved with Make-A-Wish Foundation for kids.

Ireland: Always. We’re always thinking about that, and about sustainability. We can always do better. There’s always room for improvement. That’s something we’re always thinking to do.

For the past couple of decades we’ve been hosting a “mother mentor” program. It’s a service for teenage girls who find themselves in crisis pregnancy situations. It provides mentoring, a day of workshops on things like, how to avoid domestic abuse, how to develop job skills, where to get an education, how to figure out your life’s goal. We pair each girl with a mentor, a woman in the community, and help that relationship thrive. It’s called 911 for Kids.

Cooper What about accessibility, for people with disabilities?

Cooper: You’ve come a long way from painting stones with your sister.

Ireland: We think about that in our design studios. Here’s a good example: our seven-year-old daughter’s teacher uses a wheelchair. We want to make sure our products make things easy for him. We don’t want any of these pieces to be awkward for anybody. We want

Ireland: (laughs) I know! Everybody starts somewhere.

Cooper: When you designed these products, were you thinking about ergonomics, as well?

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Lauren Aggen

t wasn’t long after Lauren Aggen’s birth that doctors realized something was wrong. Aggen was diagnosed with a rare congenital heart defect known as hypoplastic left heart syndrome (HLHS), in which underdevelopment of the left side of the heart leaves the aorta and left ventricle too small to allow for sufficient blood flow throughout the body. Aggen’s chances for survival were ruled slim without the aid of a heart transplant. At only eight days old, she became one of only a few children in Chicago who received heart transplants that year. Today, at age 21, Lauren has defied daunting odds and has learned to navigate the challenges and responsibilities associated with being a heart transplant recipient. As she approaches completion of her college studies at the National Technical Institute for the Deaf at Rochester Institute of Technology (RIT), Lauren has written a book through which to educate others and to express her gratitude to her donor’s family.

During a phone interview with ABILITY’s Chet Cooper and cardiovascular surgeon Dr. Moses DeGraft-Johnson, Lauren Aggen was joined by her mother, Janet, to discuss their courageous journey through hope and uncertainty. Chet Cooper: Congratulations on your book and on being so close to finishing college! How did you choose RIT as the place you wanted to study? Lauren Aggen: I had entered a writing contest while I was sick in the hospital, and I ended up winning it. The prize was to go visit RIT and take some classes and just get a feel for it. The school provides services for the hard-of-hearing and the deaf—interpreting services, closed captioning, that sort of thing—but at the same time, you can go into a mainstream classroom. That’s 50

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what I was looking for, and I really felt comfortable there. It was fun. Cooper: What grade were you in at the time of this visit? Lauren: I was in my senior year of high school. Cooper: What was your award-winning story about? Lauren: Well, I had to write about being an advocate for myself. It was for a program called Explore Your Future, EYF, and the contest I won was called The Spirit Contest. Cooper: What are you majoring in now? Lauren: Applied liberal arts. I’ll graduate this May, and then I’ll transfer for a bachelor’s in either education or cultural multidiscipline. Cooper: Can you explain what your applied liberal arts program focuses on? Lauren: It’s pretty much a general major, because I don’t have one particular interest. A lot of things grab my attention, so I could do a little bit of psychology, public relations, communications, and graphic design. I really enjoy talking to a big crowd. But I also like working with kids, and that’s where my interest for education comes in. Cooper: Is RIT a four-year college? Lauren: Yes, but the program I decided to go into is two years, plus another two as an option. Because of my health concerns, I didn’t really want to go through school for four straight years, just in case I got really

sick or something. So I thought if I did a two-year program and became sick, I could go home and still have a degree. Moses DeGraft-Johnson: I think it’s great that you’re trying to accomplish so much. It sounds like you’re making the most of life. Lauren: Thanks! I don’t remember any of the transplant process, since I was just a baby, but I’ve learned to be grateful for it. My heart came from a baby boy in Austin, Texas who died of sudden infant death syndrome. Cooper: You have a boy’s heart? Lauren: Yes, I do! And I don’t mind! It’s okay. (laughs) Cooper: Are you a bit of a tomboy because of that? Lauren: (laughs) No, I’m definitely not a tomboy. I enjoy going on adventures, but I’m definitely a girly girl. But some of the toxic medication that was used while I was waiting for a new heart caused me to lose my hearing, so I am profoundly deaf.

in terms of her future. We didn’t know if her life would be limited because of this health condition. It was a total unknown. You wonder, “Is this transplant an experiment? Is this really going to save my child’s life?” You feel so many emotions, and most of all, you don’t want somebody else’s kid to die, even if that saves your own. Lauren was listed for a transplant, and it was the coldest day: it was 21 degrees below zero when we made this trip from Barrington to Chicago. I got pneumonia. So then I found myself in a situation in which I couldn’t go in to see the baby, because I didn’t want to take any germs into Neonatal Intensive Care Unit. So for two days I couldn’t be with her. Doctors put her into a coma to try and conserve everything they could. All of her hair had been shaved so doctors could put tubes into her. We thought, “Is this really our baby?” It was such a roller coaster of ups and downs. I’d have a little bit of hope and then it would be taken away. Lauren was deteriorating, and the doctors consulted with us, saying they were going to have to take her off the transplant list in the morning. She was too far gone to survive the surgery.

Cooper: Do you have a cochlear implant? Lauren: No, I have a hearing aid, and that’s fine. I am going to speech therapy, because for my speaking career, it’s important that people understand me better. My mom is also a speech therapist, so she influenced me, growing up. DeGraft-Johnson: Janet, can you tell us a little, from your perspective, about all that went on with Lauren’s heart? Janet Aggen: Sure. I had delivered Lauren at about two in the morning, and she was taken to the children’s hospital in the city. I was still over in Barrington, about an hour outside of Chicago. The children’s hospital called and told me that Lauren’s heart was not compatible with life: she was going to die. So when we drove into the city, we didn’t know a heart transplant was even an option. We just thought we were going to be with our baby as she died. Once we got to the hospital, the medical team met us, our minister was with us, and each member of the team told the results of the evaluations. Each one was bleak. There was no hope, there was nothing, and the very last doctor said, “We have begun an infant transplant program, but the waiting time is generally in the thirty-day range, and this baby only has three days. We could list her, but the possibility of getting a donor in that time is really slim.” DeGraft-Johnson: What was going through your mind?

DeGraft-Johnson: You were probably exhausted, emotionally. Janet: Yes. Then the nurse came in and said, “I can’t really tell you this yet, but we just got a call. There is a possible donor, but we don’t know if it’s a match.” This began another set of highs and lows for us. We knew we’d need blood if this operation were going to occur. We needed A-positive blood, and it was New Year’s Eve, and a lot of people happened to be out partying at the time. We had to call around to everyone we could think of and say, “Could you come in and get tested to see if you could be a donor?” It was a difficult process. Once everything was in place— the heart checked out, things looked well—we learned the team transporting the transplant couldn’t land in Chicago. There was an ice storm and O’Hare airport had been closed. The heart was diverted to Milwaukee, and the doctor called and said, “I’ve got the heart and I don’t know how to get it to you in the timeframe.” I said, “Can you check and see if there’s a baby in Milwaukee who can use it?” because you don’t want the heart to go to waste. Fortunately, a pilot walking by the doctor saw the cooler and heard the conversation and offered the use of his helicopter to take the organ to the hospital. When the heart came, we could hear the helicopter blades. But we were afraid to get too excited. Too many things had gone wrong. Nevertheless, it was all looking much better once the helicopter got there.

Janet: I was in shock. We didn’t know what this meant, ABILITY 51

DeGraft-Johnson: You mentioned earlier that your minister was with you for some of this. How did this experience influence your faith?

had to worry if he might come down with something. The school nurse and I were very good friends. That communication was really helpful.

Janet: At some point early in the ordeal I realized I could never pray for a donor. I didn’t want someone else’s baby to die. Instead I just asked God to “Walk me through this. Get me through this.” That’s pretty much how I looked at it. His plan was made, and I was just part of it.

We sent a letter home to the parents of the students in her class: “If your kid gets chicken pox, please call us any time, at home, at night, whatever. We have to get her a shot within 24 hours.” And everyone was responsive to that. They were really good about it.

DeGraft-Johnson: So the doctors finished the operation, and Lauren’s new heart spontaneously started working. At some point, I’m sure you’re thinking, what is life going to be after this? Janet: Right. I’ll tell you this: when the surgeon finally came out and said, “Everything is good, but now we have to wait for rejection,” it was like, “Another thing? Rejection?” That was obviously the big word in the life of a transplant, and we just weren’t prepared for it. Also, there was nobody I could go to and ask, “What did you do?” The oldest living baby transplant was four months old. So we began on yet another journey. You have to learn to live with it. If you get a new heart, your body is never going to forget it’s not your organ. This transplant is a lifelong commitment. So we knew this was going to be what our existence would entail. You’re trading certain death for a lifelong disease.

DeGraft-Johnson: How did you feel once Lauren prepared to go away to college? Janet: I felt very confident the doctors were going to take good care of her. We got an internist, got all her specialists lined up, visited them all. Living in the dorm was a concern, but we were able to get her a single room with her own bathroom. And she missed less school her freshman year than she missed every other year. But she had a good, healthy year last year. Cooper: What’s your health like now, Lauren? How are you feeling? Lauren: I feel very fortunate that my heart is a good match. My kidneys are 40 percent damaged, due to the antirejection drug, but considering that I’ve taken medication that has hurt my kidneys for 20 years, 40 percent damage is pretty good. And I take 32 pills every day. Cooper: Throughout the day? At different stages?

DeGraft-Johnson: How long did Lauren stay in the hospital after the transplant? Janet: We were out in about a month, which was the soonest they had sent anyone home. DeGraft-Johnson: So during that first year of her life, you knew you were not out of the woods? Janet: Absolutely. I have another child who’s older than Lauren, but with Lauren we had to ask ourselves if her behavior was “normal baby stuff” or “transplant stuff.” And it was sometimes tricky to determine. But the people at Children’s Memorial were very patient in helping us figure it out. DeGraft-Johnson: From a medical perspective, even if a heart transplant recipient has a common cold, we have to assume the symptoms are transplant-related until proven otherwise. We have to rule it out. Janet: Right. So many things don’t react normally, in a transplant recipient. That’s been the real learning curve. We even told our family, “If you’re sick, we don’t want to see you, and we don’t want to come to your house.” It’s just not worth the risk. Lauren’s older brother was seven at the time, and I had to worry if somebody in his class had chicken pox. I 52

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Lauren: 10 o’clock, 11 o’clock, 10 o’clock, 11 o’clock. Cooper: What are the pills for? Lauren: I take anti-rejection drugs, so my body is fooled into thinking that my heart is actually my heart. And I have to take a lot of vitamins and blood pressure medication. I also have to take pills to protect my kidneys. It’s all kinds of good stuff. (laughs) I take them and then I go on with life. I’m very busy every day. I have classes, I work, and then I have rehearsals for a show with the RIT dance company. We do ballet, tap and jazz. We also do plays, so I act. I’m always cast as the little kid, but I don’t mind. We did a production of Little Women, and I played the youngest, Amy March. That was my favorite role that I’ve ever done. Cooper: And you do some public speaking, too, right? How did you get those opportunities? Lauren: Well, in high school, I was in a club called Project: Admission, where we taught students about the dangers of drinking and driving. I joined the club and incorporated the topic of organ donations, and then, with the help of certain teachers, I was connected

Lauren, a few days old, with family after her heart transplant.

with a team called Donate Life. I’d go into drivers’ education classes and tell kids my story. I’d tell them about how organ donation has influenced me, and I’d tell them I hope they each consider being an organ or tissue donor.

don’t really have it set in my mind whether I want to meet the family or not. I would just like them to know that I’m grateful, and I’d like them maybe to know a little bit about my story. But if they don’t want to meet me, it’s okay.

I am now volunteering at Friends of Strong, which is an organization set up at the hospital five minutes away from my dorm. For that program I’ll talk to transplant patients who are waiting for an organ and share my experience as a transplant recipient.

I would also like to know that they got my letter. That would be enough. But if they would ever want to meet me, I would definitely consider it.

Also I wrote a book, for my donor family, and it’s going to be published very soon. It’s called Austin’s Gift, and it’s basically a memoir of my life. I wrote it because I wanted to get the word out about organ donation and thank everyone who has gotten me to where I am today. It’s on Amazon right now. DeGraft-Johnson: Are people pretty receptive to the work you do with Donate Life? Have you seen people become more inclined to donate? Lauren: There have been many different responses. I don’t feel like it’s my job to be like, “Be an organ donor!” I just want them to consider it, that’s all. I’m more than happy to tell my story. DeGraft-Johnson: Do you wish you knew more about the family that donated to you? Do you hope to meet them? Lauren: I think about it. In my mind, I named the donor Austin, because that’s the town he grew up in. But I

Janet: They’re heroes. How unselfish these people must be, to have been that caring. I just marvel at their strength: in their lowest time they thought of somebody else. DeGraft-Johnson: It’s always amazing. Whenever I would go on a donor procurement and arrive at a hospital, I would become consumed with emotions because I had just left one hospital where a family was excited because they’ve gotten the phone call, and then, just when I’d arrive at the other hospital, another family would be grieving over the loss of their loved one. Janet: For a long time I felt paralyzed by that. And then, through our activities with organ transplant support, we actually started to meet donor families. I got to see the other side of the equation. These families actually felt good about the organ and tissue donation. It gave some purpose and respect to their child. They’d say, “He saved 50 lives. We got these letters. We’re still getting letters.” They feel good about that. Understanding that side of the experience was a real turning point for me. donatelife.net ABILITY 53

my belongings, fetched my telephone, and opened heavy doors for me. His unwavering devotion brought me confidence and joy. With Slugger by my side, I discovered the life-changing power of unconditional love. And I learned that even the most formidable challenges can offer something good.

CHAPTER 3 Dog Day It was four in the morning and I was too excited to sleep. Two weeks had passed since Sylvia’s wonderful news, and now it was here: dog day! In a few hours I’d be meeting Slugger for the very first time. My thoughts drifted back to one of my earliest conversations with Sylvia. She’d explained that the process of matching a service dog and human partner is like an adoption, and even with careful screening and hard work, there’s no guarantee that every partnership will succeed. In fact, Sylvia told me, Slugger had progressed part way into the matching process with a woman named Diane when that potential partnership fell through. Diane used a wheelchair and had relished the idea of a canine assistant, but the busy mother of four eventually decided not to bring an 85 pound dog—even a well-trained one— into her lively household. Diane was, according to Sylvia, bothered by the big lab’s wagging tail.

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y hands were trembling again. I needed to get a quarter out of my purse, but my quivering fingers made the task feel as intricate as neurosurgery. It’s always been that way with cerebral palsy—sometimes I just shake. I can’t help it. Still, the tired store clerk waiting at the counter in front of me didn’t understand this. She sighed, clearly wishing I would hurry up and pay for my purchase. I would have liked to have been able to do that. At last I grasped the quarter. I started to hand it to the clerk, and my fingers slipped. With a familiar flat plink, the coin hit the floor and rolled past the purple metal legs of my wheelchair. It was far beyond my reach now, but I knew what to do. I spoke softly to the companion who was standing attentively at my side, and he did what I could not. He retrieved the wayward quarter and put it carefully on the counter before taking his place beside me once more. I smiled when he did this. Now the tired clerk was smiling too. “How amazing!” she exclaimed. “I never knew a dog could do that!” My labrador, Slugger, flicked his tongue across his jowls as if to remove the taste of the quarter. He was a highly trained service dog; for him, scooping a fallen coin into his mouth—and then spitting it out on command—was routine. Slugger was accustomed to retrieving anything that slipped from my grasp. My canine partner also carried

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“You’re kidding! Heck, I’d want the dog’s tail to wag!” I’d responded, incredulous. Secretly I was grateful for Diane’s change of heart. In the dark and early morning—waiting to meet Slugger—that gratitude came back to me. It expanded, then flowed out in a sudden fusion of laughter and tears. Many people wait years to get a service dog. Though my natural impatience made it feel as if I’d been waiting for decades, in truth, only nine months had passed. If you could hang on all those months, surely you can make it a few more hours, the voice inside me said. Best try and get some rest now. Yes, rest would be reasonable, wise. Still, I couldn’t stop wondering about Slugger. Would he be as beautiful as I’d imagined? Would he like me? Would he listen? Would the two of us be a match? Hours later, those same questions circled around inside my mind as I drove over the winding road that connected my family’s mountain home to the town of Woodstock, Virginia. I would soon meet Slugger and his trainer at the public library there. Beams of sunlight reached like long and sparkling fingers, touching asphalt, clustered buildings, and verdant lawns. The brightness matched my disposition. This day was perfect! Though I didn’t realize it, my perfect day marked an end as well as a beginning. Two years before I’d heard of

CCC, Sylvia had visited her friends Stuart and Terry Porter. Terry was instrumental in helping run the organization, and she and her husband also bred labrador retrievers. Sylvia had been in search of a star puppy; when she spotted a yellow male with a gleam in his eye and enough pizzazz to merit a name like Slugger, she knew she’d found what she was after. Though only a few weeks old when Sylvia had met him, Slugger was happy and easy-going. He responded calmly to changes in his environment, other dogs, strangers, and even loud or unusual noises. The little lab loved being with people, yet he was neither too clingy nor too independent. His sturdy conformation, as well as a health screening on the dogs in his genetic lines, helped to ensure Slugger would be robust enough for service work. His playfulness and eagerness to please also helped Sylvia gauge his trainability. The puppy would happily retrieve sticks, toys, socks, anything he could get his mouth around! This hallmark of his labrador genes would prove vital to his future career. Recognizing Slugger’s potential, Sylvia made room for him in her home and in her heart. She built a strong relationship with the pup and socialized him with other people and dogs. All the while, Sylvia helped her special labrador understand that learning could be fun. Sylvia used play to create the focus and attention that would serve as the basis for his training. Positive rewards also helped Slugger learn good manners. Motivated by treats, toys, praise, and pats, he was a quick study. The enthusiastic young dog learned to ask to be let out for toileting. He learned to settle in his dog crate at night, and to take food and toys that belonged to him while leaving what did not. Sylvia went on to help her canine student master basic obedience. She taught him to walk calmly on a loose leash without forging ahead or lagging behind. Since it didn’t come naturally for Slugger to wear the packs that would soon be part of his working uniform, Sylvia also had to introduce those. She began by putting them on him at mealtimes so that the dog would associate the packs with something he loved. Before long, all she had to say was, “Slugger, time to get dressed,” and the Lab would race up to her. For a year Sylvia praised and corrected, played and loved. Then she passed her well-mannered puppy on to a CCC trainer Vickie Polk. That must have been the hard part—the tear-stained, awful, aching part. Yet Sylvia understood that some gifts must change hands in order to change a life. Vickie guided the year-old labrador through the next steps of his journey. Armed with expertise and lots of patience, she taught her canine pupil many advanced service tasks. Like most students, Slugger learned progressively, so Vickie used positive rewards to build on the training Sylvia had begun.

Cheese and praise encouraged the lab to bump elevator buttons with his nose. Practice helped him learn to heel quietly alongside his partner when she walked or used a cane or wheelchair. Once the puppy learned these and other skills, Vickie raised the criteria so that, gradually, more challenging tasks earned rewards. Then she added variables such as a change in environment, sounds and sights, slowly introducing Slugger to the pressures he would encounter as a service dog. He had to learn to work calmly and enthusiastically in places where most dogs would never go: shopping malls, restaurants, banks, schools full of inquisitive, bouncy youngsters. Vickie knew such preparation was essential. She also knew that once the young labrador mastered his task work and gained maturity and confidence, he would need to continue his journey. She loved Slugger, and like Sylvia before her, Vickie let him go. Only through that sacrifice could Slugger’s path join with mine. Now, as I hurried to the library, the thought of meeting this special dog made my heart race. My breath came warm and fast; it curled back at me from the heavy glass of the library’s front door. I pressed my face up to the pane for a moment, peering into the hallway on the other side. The usually teeming corridor was nearly empty; I imagined many of its patrons relished the chance to spend this beautiful day outdoors. But I was here to meet Vickie and Slugger, so I was thrilled. I stepped inside. Suddenly I was too excited to move or even think clearly. I stood motionless in the doorway while a single realization filled my whole being: I was going to meet Slugger! I couldn’t tell how much time passed before a noise, soft yet insistent, pulled me from my trance. A woman was standing outside, tapping lightly on the door. She was grinning, wearing a Caring Canine Companions Tshirt and loosely holding a leash in her left hand. The dog on the other end of the leash was beautiful and powerfully built. His coat was yellow, sprinkled with white. It was the color of sunshine. A green pack was fastened across the dog’s back, yet he didn’t seem to be concerned with it. He stood calmly beside his trainer. Only his tail waved as he gazed at me with huge, brown eyes. Looking back at him, I decided this was the most incredible animal I’d ever seen. I would have been happy simply watching him for hours. Then it struck me: For goodness sake, move out of the way so they can come in! ABILITY 55

The pair stepped neatly into the room, and the woman turned to me. “Are you Leigh?” “Yeah,” I answered through a grin that nearly reached my ears. “Great! I’m Vickie, and this fellow here is Slugger.” She gave the dog’s head a quick pat.

Now she repeated the “light” command and pointed to the fixture. Slugger dashed over to it, hopped up, and used his mouth to switch the light on before returning to Vickie’s side.

Vickie and I filled our introductions with friendly questions and laughter. I tried to look her in the eye as we talked, but my gaze kept drifting downward. I couldn’t stop staring at Slugger. He seemed to share my curiosity; he eventually stretched toward me, plastered his wet nose against my knee, and inhaled. I giggled at his snuffled greeting.

Now my speechless haze dissolved with a single word:

I longed to reach down and stroke Slugger’s head, to feel the softness of his fur. But Sylvia had told me that petting a service dog when it was dressed in its packs would disrupt its training, so I jammed my hands into my jeans pocket to resist the temptation.

“Slugger’s favorite reward,” she informed me as she offered it to him.

When Vickie asked Slugger, “What do you say, boy? Are you ready to show Leigh what you can do?” I chimed in, as eager as a kid on Christmas morning.

Vickie laughed. “Oh yeah!”

“Please!” We headed to a vacant conference room at the far end of the library. I scampered to one of the puffy office chairs there and plopped down. “We’ll show you some of the basics first,” Vickie said, smiling at me. “Just watch and listen for now.” She had Slugger demonstrate obedience tasks. Then she told me that many service dogs are trained to bark on command. “Slugger can work a bit like a personal safety system for you,” she explained. “For example, if you fall and need another person’s help, the dog will bark to alert others that something is wrong. All you have to do is this.” Vickie turned her attention to the labrador and commanded, “Slugger, bark.” Obediently, the dog let out a single hearty Woof! I was both startled and awed by the deep, booming sound, and Vickie was pleased. “Good boy!” she said, patting the top of the dog’s head. Next she walked Slugger across the room to where a light switch was affixed to the wall. She tapped its metal plate, “Slugger, light!” Following her enthusiastic command, the lab stood up on his hind legs. He fit his mouth around the switch and nudged it downward until the light clicked off. I could barely believe what I’d just seen. I sat in the darkened room, too stunned to speak. There was a gleam in the trainer’s eye when she said, “It’s important for service dogs to provide assistance in public and in the home. Slugger’s ability to turn lights on and off 56

would be helpful if you were too tired or ill to get them yourself, or if you were ever seated in a wheelchair. Watch this.”

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“Amazing!” A cloth pouch was fastened around Vickie’s waist. She shoved the fingers of her right hand into it and extracted a small, bright orange cube-cheese.

The labrador gulped the treat with such fervor that I proclaimed, “Supersonic gusto!”

Suddenly in awe of both the dog and his trainer, I asked, “How the heck did you teach him all these things?” “Three Ps,” said Vickie. “Patience, practice, and positive rewards.” Then, she grinned. “You know, I think it’s time for you to give it a try.” “Huh?” I blinked at her. “How about taking a short walk with Slugger? Just down to the end of the hallway and back.” I sprang out of my chair so fast I nearly took a nosedive. “Sure!” Vickie led us into the hall. She put a handful of cheese morsels in my right hand and slipped Slugger’s leash into my left. “Just walk the way you always do, at your normal pace,” she told me. “Try to hold the leash loosely without pulling on it. Tell Slugger to heel. If he starts walking faster than you, just stop. Stand still and say ‘heel’ again. When he walks nicely at your side, praise him and give him a treat. That’s all there is to it. This will help you see what it’s like to work together. I’ll wait right here for you. Got it?” “Got it,” I said, though I wasn’t at all sure I did. I breathed deeply and looked down at the yellow labrador. “Slugger, heel,” I said. With that, we took our first steps together. The dog was accustomed to working with Vickie, and his claws sent a brisk tap-tap, tap-tap down the corridor. My own movements were slow and tedious. Before we’d traveled more than a few steps, Slugger had pulled ahead of me.

Remembering Vickie’s instructions, I stopped. I stood still and re-stated the command, “Slugger, heel.” To my astonishment he backed up and positioned himself correctly beside me. “Good boy!” I exclaimed. I offered him a piece of cheese, and we continued our walk. Each time the dog moved ahead of me, I stopped, repeated the heel command, and started once more. The process seemed painstakingly slow. By the time I’d uttered my fifth heel command, I was beginning to wonder if this powerful, brilliant dog would ever actually adjust to my wobbly-legged gait. But then it happened. We resumed our walk, and this time, Slugger didn’t rush forward. He moved beside me, glancing up repeatedly as if trying to gauge my unfamiliar stride. His steps were cautious; his pace matched my own. I was amazed. For so long, keeping up with others had been my definition of grace.

He shoved his fingers through his sweaty hair. “Why do we got to have a hop-along on our team? She’s nothing but a cripple. She can’t even run! She’s so weird, man!” Such taunts echoed through my childhood. Today the sneers were silenced. With Slugger, there was no race to be won; there was only a path to be traveled together. Suddenly I was filled with the urge to interrupt our sojourn, to bend down and hug the labrador. Still, I imagined that wasn’t part of appropriate service dog protocol. Instead I practically sang, “Good boy, Slugger! What great heeling, you smart, gorgeous animal!” I gave him an extra big piece of cheese. The dog’s body swayed lightly against my leg, following the rhythm of his wagging tail.

When I was a child, that grace had often deserted me, vanishing like mist in sunlight. I recalled one particular afternoon in fourth grade. I was on the playground with my classmates, standing in a relay line. I stared down at my shoes. Their scuffed toes reminded me of things I wanted to forget: Not today, I’d vowed. I’m not going to fall this time.

When we turned and retraced our steps down the hall to where Vickie was waiting, Slugger and I moved slowly, awkwardly; but we moved together. After a lifetime of struggling to keep up with others, I found myself accompanied by an incredible dog, one willing to walk beside me at my pace.

The line moved forward steadily, as runners took off one after another. My classmates cheered. They jumped around, and thumped the shoulders of the fastest racers: “Good job! Good job, man!” Our team was ahead.

Inspired, I whispered to him. “I know I’ve got a funky hustle, boy. But I’ll bet we could find our own rhythm if you’re up for it.” For now there was simply the measured tread of foot and paw. And the hopeful pounding of my heart.

I yelled at the red-faced boy who suddenly charged toward me, “Way to go! Run!” I inhaled and held out my hand. He slapped it with a sweaty palm as he crossed the line. My turn. Oh God! I willed my body into a frantic trot. My mind took up a chant: Left. Right. Keep going. Left. Right. Don’t fall. Left. Right. It’s easy. Then I heard the soft crunch of my opponent’s sneakers in the dirt. Her ponytail bobbed up and down as she ran past me. My teammates screamed, “No!” The voice inside me screamed louder: Keep up, you stupid feet, for once in your life run fast! I tried to pick up speed, and my left foot slammed against the uneven earth. My ankle gave in. I stumbled forward, fighting to regain some balance. Then I crashed. The rough ground tore my skin. I felt blood trickling down my right leg, and dripping from a gash on my cheek. Droplets splattered like scarlet paint in the dirt. In fourth grade I knew the only thing worse than falling in front of my classmates was letting them see me cry, so I swallowed hard against the sobs that rose in my throat. The yelling that had filled the air was gone, 58

replaced by whispering and pointing. One of the fastest runners on our team, Jimmy, snorted loudly and spat.

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“Slugger’s the neatest dog in the world!” Forgetting good library manners, I broadcast my review loudly down the hall before we had even reached Vickie. By the time the labrador and I were at her side, I couldn’t stop talking. “He did a great job for me! Didn’t you, boy?” Two morsels of cheese remained in my hand. They were squishy-soft around the edges now, but Slugger gobbled them happily. He wagged his tail and licked his jowls. Then he burped. “Is that his way of saying thanks?” I grinned at Vickie. She didn’t return my smile. Tears made wet, serpentine tracks down her face. Suddenly I felt as if my heart had plunged into my stomach. “Oh! What’s wrong?” “Nothing’s wrong,” Vickie answered. “That’s just it: it’s right.” She brushed a tear from her cheek and continued, “I know this dog, and when I see how he responds to you, there’s no doubt in my mind. You two are destined to be a team. That’s more than my hunch. It’s something Slugger knows.” bellbridgebooks.com leighbrill.com adognamedslugger.com

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1 Site of the London 2012 Paralympic Games 4 Fox sitcom starring Daryl “chill” Mitchell 11 Computer memory or butter? 12 “Get on the __, forget about us” .... 13 Devote one’s life to 14 Home of the Heat 17 ___ Cruiser 18 The main character in this film has lupus and it describes her effort to have a romantic relationship and cope with it (2 words) 24 Go well together 26 Buffalo’s county 27 That __ the question 29 Rock and Roller who sang “Runaway” : __ Shannon 30 Chinese treatment that can alleviate pain and improve many physical conditions 34 Cover 35 __-lingual 36 President who fought for human rights 37 Good card in Texas hold’em (3 words) 41 Med. care provider 43 Beatle album 45 East coast folk/rock singer who is making it big despite visual impairment 48 November 18 is the anniversary of this Act 51 Regina Hall campaigns for more public awareness of this rare skin condition 52 Annoy 53 “Savvy?” 54 Frequent issue that has been fought for, for people with disabilities 55 Pursue 56 Phoenix player

1 Pigeon-holed 2 Music capital 3 Retreat 5 Sandwich slice 6 “Rainman” star’s first name 7 Chapter in history 8 Important walkways 9 Motorcycle great starred in “On Any Sunday” who doesn’t let Parkinson’s slow him down, Malcolm _____ 10 Ringo’s instrument 15 Belief, for short 16 Augusta’s state 19 Miners’ find 20 Wide shoe fitting 21 Corporate abbreviation 22 Defeat thoroughly 23 Tigers in college football, abbr. 25 Part of some E-mail addresses 28 In a stone cold manner 30 Comic Sandler 31 Put to work 32 News channel 33 LT and Adrian Peterson, for example 36 A popular short film was made by Carl McIntyre about this condition which can result from a stroke 38 Military rank, for short 39 Lord of the Rings bad guy 40 Pals 41 Printer maker 42 Champion for people with disabilities politically 44 Fragrant purple flowers 46 Supplies assistance to 47 Silver, to the Lone Ranger 49 Weapons 50 Moving 1985 film starring Cher, about a boy with cranial disfigurement answers on page 62

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