EPT /S UG A ITTE Volume 2009Volume RJ M $4.99

MAGAZINE VOLUME 2009 RJ MITTE AUGUST/SEPTEMBER THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY ABILITY 3 MANAGING EDITOR Gillian Friedman, MD

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

CONTRIBUTING SENATOR U.S. Sen. Tom Harkin (D-IA)

HUMOR WRITERS Jeff Charlebois George Covington, JD Gene Feldman, JD

EDITORS Liz Angeles Diane Chappell Dahvi Fischer Renne Gardner Valerie Sobel’s Chapel Sonnie Gutierrez Josh Pate David Radcliff 6 SENATOR HARKIN — ADA: 19 Years Of Progress Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD 8 HUMOR — Too Sexy For My Chair Romney Snyder

HEALTH EDITORS 10 ASHLEY’S COLUMN — Stop The Presses Larry Goldstein, MD Natalia Ryndin, MD Extremity Games 12 SOBEL FOUNDATION — How To Nurture Good News Lady Diana with Jerry White p. 34 CONTRIBUTING WRITERS Gale Kamen, PhD Laurance Johnston, PhD 14 CHUCK U — Performing Arts Studio West Actors’ Class Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle 16 ASTHMA — Cat Got Your Lungs? Dana Nelson Paula Pearlman, JD John Paizis 18 INDEPENDENT LIVING — Interview With Louis Frick Richard Pimentel Allen Rucker Kristen McCarthy Thomas 20 UN CONVENTION — Words From The Whitehouse Brazil’s Movement p. 24 Betsy Valnes Paralympic Games Beijing WEB EDITOR 24 BRAZIL — UN Convention Struggle Joy Cortes GRAPHIC ART/ ABILITY TO HELP — My First Chance To Volunteer ILLUSTRATION 28 Scott Johnson Keriann Martin 30 MARRIOTT’S — Bridges To Work Melissa Murphy - Medical Illustration PHOTOGRAPHY Breaking Bad p. 44 Nancy Villere - 34 LANDMINES — Jerry White’s Survivor Corps Mission Music Within CrushPhotoStudios.com

TRANSCRIPTIONIST 44 RJ MITTE — Breaking Bad Is Good Sandy Grabowski

58 MEAN LITTLE DEAF QUEER — Terry Galloway DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

ROSSWORD UZZLE Guess Your Best! MARKETING/PROMOTIONS 60 C P — Liz Angeles Andrew Spielberg

64 EVENTS & CONFERENCES Blair Volunteering p. 28 PUBLIC RELATIONS

ABILITY’s Crossword Puzzle ABILITY’s JSPR

74 SUBSCRIBE TO ABILITY MAGAZINE NEWSSTAND CIRCULATION

CONTENTS John Cappello

WWW.ABILITYMAGAZINE.COM EDITORIAL [email protected] ADVERTISING DISTRIBUTION CORPORATE SHIPPING For advertising Warner Publishing Services 8941 Atlanta Ave. NON-PROFITS information e mail A Time-Warner Company Huntington Beach, CA 92627 ABILITY Awareness/Fuller Center [email protected] Faxon - RoweCom Library Tel 949.854.8700 or call Services TTY 949.548.5157 Habitat for Humanity 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Ashley Fiolek p. 10 Swets Blackwell PUBLISHER Chet Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may not be those of ABILITY Magazine POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2009 RJ Mitte Aug/Sept Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2009 ABILITY Magazine The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corpora- tions, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved.

abilitybuild.org [email protected] abilityawareness.org

ABILITYABILITY 5 5 cases, the Supreme Court did not look at the report language and the findings we had made in the Congress as to who is covered by the ADA.

The ADA Amendments Act restored our original Congressional intent by clarifying and broadening the definition of disability in the ADA, and increasing eligibility for the protections of the ADA. Thanks to that legislation, people who were denied cover- age under the ADA will now be covered.

Despite the very real progress in the nearly two decades since we passed the ADA, we still have an unfinished agenda. At the top of the list is the Community Choice Act. All across America, individuals with sig- nificant disabilities who are on Medicaid and need an institutional level of care have the right to receive their care in an institu- tional setting or nursing home. But they are denied the equal right to choose to receive their services in a home or com- munity-based setting.

ADA: 19 YEARS OF PROGRESS Under the U.S. Supreme Court’s decision in Olmstead v. L.C. (1999), individuals with disabilities have the right to choose to receive their long-term services and sup- At the end of July, we commemorated the 19th anniver- ports in the community, rather than in an institutional sary of the Americans with Disabilities Act (ADA)—the setting. This year marks the 10-year anniversary of the landmark civil rights law securing the rights of people Olmstead decision—which was based on the ADA. with disabilities. As chief Senate sponsor of this legisla- tion, I remember the day it was signed into law—July In Olmstead, the Supreme Court said “institutional 26, 1990—as one of the proudest in my entire legisla- placement of persons who can handle and benefit from tive career. community settings perpetuates unwarranted assump- tions that persons so isolated are incapable or unworthy Nineteen years later, we have made amazing progress. of participating in community life.” Changing these Streets, buildings and transportation are more accessible assumptions is what the ADA was all about. for people with physical disabilities. Information is offered in alternative formats—including closed cap- Although many states have made progress over the past tioning—so that it is useable by individuals with visual 10 years in extending home and community-based ser- or hearing impairments. Employers are required to pro- vices, it has been done in a patchwork way that keeps vide reasonable accommodations so that people with many individuals with significant disabilities on waiting disabilities can have equal opportunity in the workplace. lists or living in states with insufficient services. And we have advanced the four goals of the ADA— equality of opportunity, full participation, independent As a result, there are more than half a million individu- living and economic self-sufficiency. These changes are als, with various types of disabilities, who do not have all around us, and are so integrated into our daily lives adequate community-based attendant services and sup- that it is sometimes hard to remember how the world ports to help them with critical activities of daily living. was before the ADA. In the case of an individual with a significant spinal cord injury, this may mean assistance getting ready in Last year, we were able to pass the ADA Amendments the morning and out of the house for work. Such ser- Act, overturning a series of Supreme Court cases that vices are critical because if an individual cannot get this greatly narrowed the scope of who is protected by the assistance, then they are not able to go to work, even if ADA. These cases held, first, that mitigating measures they want to. They cannot benefit from the curb cuts, –such as medication, prosthetics, or other assistive the accessible transportation, or the reasonable accom- devices—must be considered in determining whether a modations that employers must provide. The vast person has a disability under the ADA; and second, that progress we have made does not extend to them. This is there must be a demanding standard in assessing a profound injustice. whether an individual has a “disability.” In each of those

6 ABILITY As Congress hammers out comprehensive health reform this summer and fall, we must seize on this opportunity to make progress in extending the availability of atten- dant supports and services. Every individual with a sig- nificant disability deserves the choice about where to live, where to receive their essential services, and whether and where to work.

Another ongoing challenge is the employment of indi- viduals with disabilities. Recent surveys show that 63 percent of people with disabilities are unemployed. They want to work. They have abilities. But they are unemployed. This is due to a variety of factors: many individuals lack adequate support services; some employers are not providing reasonable accommoda- tions; and some are still reluctant to hire people with disabilities. An estimated 21 million people with dis- abilities are not employed and we need to do a better job with providing these individuals the opportunity for economic self-sufficiency as we promised in the ADA.

We have not yet arrived at the Promised Land—certain- ly not with the high unemployment rate among people with disabilities and a lack of available community- based attendant services and supports. We have more work to do.

On July 26, 1990, when he signed ADA into law, Presi- dent George Herbert Walker Bush spoke with great elo- quence. And I will never forget his final words before taking up his pen. He said, “Let the shameful wall of exclusion finally come tumbling down.”

Today, that wall is indeed falling. The ADA has opened doors, created opportunity, and transformed lives. Let us continue this progress!

Sincerely,

Senator Tom Harkin www.harkin.senate.gov

ABILITY 7 HUMOR THERAPY I know there’s always going to be something wrong with the person I’m dating. For starters, she’s with me and that just don’t seem right. I joke, but I joke for a purpose. I know that my sense of humor is a strong quality of mine. Many girls have dated me because of my sense of humor. (On a side note, many girls have dumped me because of my sense of humor.) My point is, always play to your strengths— like personality, charm, nurturing, or washing their car.

I’ve got to be honest with you…I’m not attract- ed to disabled people. I mean, come on, what if I dated another quad? Somebody’s got to do the heavy lifting in the relationship. (I mean the moving and grooving in the sack, wink, wink.) It would just be too difficult to be with another quad. What would we do? Lie in bed smoking cigarettes, talking about how good it could’ve been? Bump and grind wheelchairs? Besides, by the time either of us got undressed it would be hat do you think of people with disabilities? I morning. I’m sorry, I think it’s best if I stay away from mean, are they attractive folks? Wow, what a my own kind. Maybe I’m shallow. Wcrazy question. I’m sorry, I couldn’t help but to ask it. I’m a disabled dude in a wheelchair, so I’ve This, by no means, means that I think people with dis- often wondered how people see me. abilities are unattractive—to each, his or her own. I never really know how others view me. It’s probably not For the most part, I’ve been pretty lucky over the years important. I’m glad I don’t have Andy Rooney eye- with the whole dating thing. I can usually tell whether brows. (That dude needs a weed whacker.) However or not someone is attracted to me. Being laughed at cliché it might sound, what’s important is how I see could be a no go signal. Getting spit upon is never a myself…which is obviously a hunk, a hunk of burning good sign. Being slapped—I consider myself still in love. You heard me. I see you undressing me in your the game. mind. Stop it! You’re embarrassing me.

There have been times when I think I’m connecting Simply put, just like who you are. I do, ‘cause that’s with a totally hot babe only to find that she’s really not who I have to live with…and it ain’t easy. (I’m moody. interested in me at all. Of course, I always wonder if it’s Shut up! I’m sorry.) So if you’re mean, rude or bitter, me she’s just not attracted to or if it’s the disability that you’re probably an ugly person. As for looks, we are turned her off. It’s not like she’s going to tell me. “Of what we are. Take it or leave it. Life will still go on. course it’s not your disability, honey, you’re just ugly.” Don’t judge a book by its cover, lest ye be judged back Well thank God for that. For a second there, I thought by the book. And don’t let the judge throw the book at you were shallow. you after you’ve been booked. (Incidentally, check out my book on Amazon.com…only $14.95.) I’ve also been out with my buddies and been the one who gets the girl, only to hear my friends mutter, “Man, So are people with disabilities attractive? Who knows? I gotta get me a wheelchair.” So, I hate to say it but, the Who cares? My opinion is, a person with a disability disability has helped land me a chick or two…not in the brings a lot to a relationship table (besides, possibly, same night, but hey, I’m still young. I haven’t deci- their own chair). It’s about seeing beauty beyond the phered my appeal; maybe women think a guy with a physical realm…or through a pair of binoculars. It disability can be trusted. Fools, I say, but I’ll take it. Use involves a real connection of seeing into your partner’s whatever you got, baby. Damn right, I’ll take a sympa- soul. It doesn’t always have to be about appearance or thy date…as long as she’s buying. sex...that’s only 96% of it. There’s somebody for everybody out there (even Andy Rooney). Yeah, you You never know what people are into. I once dated a might not get that hot babe or that gorgeous guy, but girl for two years. She loved to go to the mall with me. who knows? You might get something better: someone Come to find out, she was just using me for my handi- who loves you for who you are. Stranger things have cap placard. Swine! Don’t worry, the deception was happened. mutual, ‘cause I was just using her to get to her hot mother. (I got a thing for them cougars.) “Ham on by Jeff Charlebois a Roll”

8 ABILITY ABILITY 9 am sitting in downtown LA right now at my hotel didn’t go well for me..hahaha..so this year I have been which is about ten minutes away from the Home hard at work getting ready. Because I now ride for IDepot Center. I am one of the many athletes waiting Honda/Red Bull Racing, they built me a separate SX to take part in X Games 15. This is my second year bike. I love my supercross bike; it is built just for me. invited to attend, but my first year competing because I Suspension is definitely very important, so I went out was out last year due to an injury. and tested the bike. It fits me perfectly!

As I have mentioned before, my sport is motocross. I already had one practice; one more to go and then on Motocross is raced on outdoor tracks usually at least to the race. Everyone here is pumped to win Gold. It is two minutes long or longer. I race two motos and we are pretty cool to be here as a spectator too, because there scored by the added points from both finishes. We race are so many different athletes here and so many differ- from15 to 20 minutes, and the course consists of long ent sports—never a dull moment and always something straightaways and turns and some jumps. For X Games I to watch and do. I have a friend who competes in skate- have to race supercross; it is not what the girl racers are boarding on the vert ramp, another friend who does used to at all. BMX freestyle, and another friend involved in Rally car. I try to get to all of the events to cheer them on because The boy riders compete in two different series: One is I know they will be cheering me on. motocross, the same circuit as the women, raced during the summer outdoors. The other series is in the If you ever get the opportunity to attend X Games, come winter/spring months and it is called supercross, raced and check it out. If you see me watching, come by and mostly indoors, but some outdoor stadiums are also watch with me! It is just a great place to hang out with included. Supercross is a shorter track, very tight and everyone and have a good time. mostly filled with jumps: triple jumps, double jumps, table tops...step ons, step offs, long sets of whoops Stop the presses! Can I get this last minute news flash (small, tight jumps that you blast through or double before print?...I did it! I won Gold at X Games last jump through). It is way crazy! night! It was an amazing feeling; I am so pumped and it was all so surreal that I can’t even explain how excited I All of the events at X Games are either at the Home was! Thanks to the deaf fans who waited around to see Depot Center or the Staples Center, so obviously there me right before my medal ceremony. It really meant a is no place for a huge outdoor track. They wanted to lot to me, and I am so glad that I had the chance to meet include the girls for the first time last year so the com- you all! More next issue... petition was a supercross race. The boys were already racing supercross there and also doing “freestyle” moto. ashleyfiolek.com This is a big change from what we are used to, and it is also right in the middle of our motocross racing season. It is also an honor that ESPN X Games wanted to include the women of motocross in their program along with the men.

To prepare for supercross, you normally need a different suspension and different set-ups than our motocross bikes, so a lot of preparation is involved. We all have to work on our jumping skills as well. Last year’s preparation

10 ABILITY

How to Nurture Good News Until it Consumes You

t is the summer of 2009 and the euphoria of the elec- I was a parent who received the phone call that all par- tion is receding. Yesterday I felt guarded optimism. ents dread. It was from my son Andre’s school nurse. He IToday CNN flashes news of 10 percent unemploy- was 18 at the time, and the nurse relayed a medical com- ment and roller coaster markets. A neighbor I bumped plaint that within hours escalated into the event that into buying batteries at the variety store shares the news changed the life of my family. We survived the 417 days about another foreclosure in our little village–a devas- of the indescribable agony of his illness, only to lose him tating blow for a family on her road. Friends I know to an inoperable malignant brain tumor. What followed have nightmares of wolves at their heels. Even those not were my mother’s fatal stroke and my husband’s suicide imminently endangered take tender steps. And most per- within the same year. Even as I write this, there is an sonally for me, our nonprofit sector is especially hard unreality to it, as if I were describing someone else’s life. hit. When we say that “charity begins at home,” it feels Yet now, 10 years later, I believe that you can shift your like “charity is staying at home.” Philanthropy now is a state of mind if you choose to believe that you can. luxury product. You need to start by cataloguing the elements in your I notice, though, that we still treat our family to the life that make you grateful. This simple act brings you movies, keep a subscription to a favorite magazine, or fully into the moment, and almost immediately you can even buy a box of out of season raspberries before deny- sense it creating a positive shift. Why? ing ourselves. These are the dollars we might otherwise spend on charity and we justify and savor these choices There are studies that have a name for the phenomenon instead of the island vacation, or the weekend at the spa. they call “subjective well-being” (SWB) and what can I know that I do. help maintain it. The components of SWB have even been measured with some scientific validity. Mathieu Yes, we are shaken out of our comfort zone. And Ricard, a Buddhist monk, and close associate of His yet…although extravagance has dried up with yester- Holiness, the Dalai Lama, agrees with their tenets. He day’s raindrops, charity too, is seeping back into our should know, as Ricard was pronounced the “happiest lives, an insistent trickle in a drying riverbed: an impulse man in the world” by Shift Magazine of the Institute of that cannot be checked. Instead of resenting what “isn’t,” Noetic Sciences. Extensive neuroimaging of his brain at I’ve learned to nurture the good news that “is”…and the University of Wisconsin registered the highest level have found that this act of gratitude transforms. ever recorded (off the scale) in the area of the brain associated with positive emotions. Good and bad will happen. The control we have is how we perceive and what we do with the events in our lives. The elements identified to create and maintain happiness I am far from encouraging you to be supremely brave, were identified as: expressing gratitude, positive think- or unrealistically cheerful in the face of anxiety, concern ing, forgiveness, acts of kindness and belief in a higher or sorrow. However, I quote Abraham Lincoln, a power or purpose. Contrast this with sobering research famously sensible man who said, “You are as happy as about lottery winners. Researchers of these lucky people you make up your mind to be.” observe what they call “hedonic adaptation” whereby the winners’ levels of happiness are only temporarily boost- I had a front row seat to an unthinkable human drama, ed. They quickly return to their baseline temperaments and give testimony to the truth of nurturing gratitude. and at times even experience a slump.

12 ABILITY You are as happy as you make your mind up to be. What to do with Bad News: Gratitude is how I survived long enough to create our These days, we need to deliberately guard our frame of foundation. I founded the Andre Sobel River of Life mind and protect our spirit. Try to edit news intentional- Foundation (ASRL) to honor my child, to make sense of ly according to some criterion. For some reason, bad my losses and to give life to a mission that I understood. news spreads like “viral marketing.” We learn about an ASRL helps the most unfortunate of parents, the ones earthquake, train wreck, bovine or avian epidemic faster with catastrophically ill children who are also single than if our next door neighbor just won the Nobel Prize. caregivers. We assist families who have run out of financial and emotional resources. Ours is a hugely nec- What we can do is: read, watch and listen selectively essary work that hinges on money. We don’t provide and filter according to: is it in my power to do anything comforting teddy bears, psychological assistance, or about this happening? Would I choose to change this education. We solely provide assistance funds. We save particular event, above all others if it were possible? Am homes from foreclosures, provide food that often gets I watching this out of morbid curiosity? This type of self delivered to homebound parents, and prevent utilities talk is useful. In fact, without it, we risk our equilibri- from being shut off. The families we help are feeling the um. A negative mindset can slowly creep into our sub- financial downturn exponentially more than most, and conscious, spreading slowly, like ink on a blot forming a sadly so are organizations like ours that help them. Rorschach image of underlying hopelessness. Soon it is hard to tell when it was that we became pessimistic peo- Like so many in our sector, our endowment plummeted ple. We can shore up the spirit that is within us, always just as the need for more aid began to spike. And yet…in at our service. It is willing to go the way you direct it. the midst of our foundation being anxious, not only about the future of our constituency, but also about the What to do with Good News: future of charitable donations, the clouds unexpectedly Good news is to be welcomed with open arms, put on a parted and we received a major corporate gift. This phil- pedestal with a world built around it. When we find rea- anthropic gift provided a river of support, allowing us to sons to be grateful, they will color our organization, our expand our work and attend to the needs of families we day and our life. Embrace good news until it becomes simply couldn’t help before. It was The Genentech the lens through which you see your world. Like the Foundation who found us (we were not seeking them), insistent impulse of charity, it will gradually take over, and saw that we were a perfect fit with their benevolent and become what you believe in. This will magnetize intention. They were seeking an organization that works more good news, until there is no need to make the effort as we do: supporting pediatric patients with compassion, of seeing the cup half full, because it is full. providing a 24 hour turnaround and with minimal over- by Valerie Sobel head. We became the centerpiece of their newly created andreriveroflife.org Everyday Needs Assistance Program.

When we received this gift, rather than just deposit the check and continue to wring our hands, I went to my lit- tle chapel and allowed gratitude to seep into my very being. I continually allow this intentional activity to make the sustainable difference to my subjective well- being; it always does.

With intention, we are now sharing this gift and see it rippling through communities to places like Diana’s home, where she lives with her mom, a widow, and her little brother. Even as 13-year-old, Diana faces the dark- est days of her life—she has an inoperable brain tumor. She has a profound understanding of gratitude. For Diana, it is the joyfulness she feels that her mom, who she describes as “a strong and independent woman, the most amazing woman I know who has taught me every- thing” is with her every day. She reads to her, massages her toes and helps her feel at peace. Her gratitude is authentic and real. It springs from the deepest place of “knowing,” and it is something we can all access.

So how do we, like Diana, nurture the good and keep bad news from interfering with our sense of gratitude? It is not selfish, but wise, to safeguard the delicate bal- ance of our emotional thermostat in favor of our SWB.

ABILITY 13 Scott Krinsky and Patricia Rae, from NBC’s Chuck, give an acting workshop at PASW

alking into an audition is a daunting challenge the part that’s going to be yours.” for any performer, but for actors with physical Wor developmental disabilities, the experience Krinsky admitted to periods of frustration in his own can be even more overwhelming. Not only are roles of career, wryly noting that he was frequently cast as characters with disabilities in short supply in film and drunks before landing the role of Jeff Barnes, a member television, they tend to be highly coveted by actors who of the “Nerd Herd” on Chuck. “I feel like where I am do not live with physical challenges in their own lives. now in my career is really where I am living the dream,” So what is a talented actor with a disability to do if he or Krinsky said. “It just took some time.” she wants to “make it” in Hollywood? Rae was quick to point out that Krinsky’s role on Chuck The answer, according to a California collective called was offered to him because a producer remembered him Performing Arts Studio West (PASW), lies in thorough from a five-episode stint as Daryll on The O.C. “Always preparation and expert training. Within the walls of its be professional, and be courteous to everybody,” Rae unassuming brick building in Inglewood, PASW equips told the PASW clients. “It doesn’t matter if you’re an its eager actors with dance, voice, and acting training, extra or the star. You never know where your next job is gearing each of them for the occasionally bitter winds of coming from.” Tinseltown, and instilling each with the confidence that his or her unique disability is an asset rather than a limi- Though neither Rae nor Krinsky have disabilities, both tation. The approach has paid off, leading several PASW find the struggles of actors with disabilities somewhat clients to work on shows like ER, Saving Grace, and relatable to their own. “I had an awakening when I was The Secret Life of the American Teenager. in a casting office at the beginning of my career,” Rae said. “The woman said to me, ‘You’re Latin, you’ll PASW’s rigorous training is supplemented by visits never work.’ I just said, ‘Okay, we’ll see about that.’ from recognizable working actors, as well as question- And I’m working. For a male Caucasian actor, there are and-answer sessions aimed at giving the straight scoop challenges. But add a different gender to it and add any to PASW clients. On a recent Wednesday morning, sort of minority aspect to it, and that’s something else. PASW was visited by actors Scott Krinsky and Patricia I’ve had to overcome so many obstacles, and I still say Rae, both of the cast of NBC’s Chuck. Both actors it’s possible.” emphasized the need for perseverance in the face of inevitable setbacks. In addition to the role of Bolonia on Chuck, Rae’s tenac- ity has landed her work on series such as Law & Order “If you don’t get a part, that wasn’t your part to have,” and Malcolm in the Middle, and in feature films such as Krinsky said. “You’re just one more audition closer to 2004’s Maria Full of Grace. “Acting feeds my soul,”

14 ABILITY Rae said. “I’ve played good characters, I’ve played generic characters, and I’ve played stereotypes. I don’t mind playing the stereotypes because a stereotype is a stereotype for a reason. If you give that stereotype a real- ity, then it’s a real character. But playing a stereotype with no depth is a sad thing to do.”

Rae posited that the best way to beat the film industry at its own game is to create your own material. “I’m not waiting around for Hollywood to tell me I’m worth something,” she told the audience of PASW clients. “If you’re not acting, you should be writing for yourself.” This proactive approach to her career led Rae and some friends to raise $40,000 for the production of Silverlake Video: The Movie, a film for which she also served as costumer and caterer. Now in post-production, the film features Rae and Krinsky, and was written and directed by Rae’s boyfriend, Mat- teo Ribaudo.

Ribaudo, Rae said, is an actor and “an avid, ferocious writer” who, like many talents in Hollywood, has struggled to break through to visibility. “He’s been so close to getting so many deals together,” Rae said. “I final- ly said to him, ‘Don’t let Hollywood tell you you’re not a filmmaker. If you have to make a movie on your iPhone, make it.’”

Krinsky found that his own path to success was made easier by pushing himself to do stand-up comedy. “At first it was very frightening,” he says with a laugh. “Now it’s still frightening, but in a different way. It’s become more of an anxiety.”

After majoring in communication and broadcast journalism at Salisbury University, Krinsky landed an internship at CNN and a job in corporate videos before realizing his true aspirations pointed elsewhere. “Acting was something I had studied part-time and it was a dream of mine, but I never thought it would be a viable career,” Krinsky said. “ You really have to look inside yourself, and I did, and I went for it. My head was telling me I was limited, and then all of a sudden, I decided that I wasn’t. I only have one life to live.”

In addition to his role on Chuck, which returns as a midseason replace- ment this year due to a deluge of fan support, Krinsky can still be seen regularly at the Comedy Store in Los Angeles. “Stand-up is a weird thing,” Krinsky jokes, “because you love it and at the same time you kind of want to kill yourself. But you keep doing it.”

Rae, a single mother who works as a hostess at a high-end restaurant in Hollywood, estimates she has four films currently in post-production as she continues to audition for more work. “Even if I’m not getting paid, I find a way to act. It doesn’t matter if I’m acting for free on a stage, if I’m doing a comedy troupe, if I’m doing a benefit, or if I come to a school and volunteer. If you’re only doing a job because it pays you, then you need to find another career.”

Krinsky and Rae, who performed improv comedy alongside some of the PASW clients, noted they were impressed by the experience and by the performers they worked with that morning. “Everyone has their own challenges, and some are greater than others,” Krinsky said, “but you make the most of your situation and anything is possible. A lot of these guys and girls [at PASW] have been on TV now, so they’re an example to their classmates that you can do whatever you want. Just never say no.”

by David Radcliff pastudiowest.com

ABILITY 15 Basil and Rodney take a little time to enjoy the view

t always starts at night. I wake up groggy, wondering considered to have a disability, and can receive SSI ben- if I heard a sound, or if my cat, Basil, curled up on efits if it is severe enough. Asthma is a chronic illness, Imy legs again and woke me. I’m a light sleeper. like diabetes, cancer, hypoglycemia, and HIV, and is After that first hour of deep sleep, anything can stir me shared by approximately 300 million people around the from slumber. But this time, it only takes a moment to world. realize that it’s my own body waking me up, murmuring in my chest, telling me I can’t breathe. I haven’t always had asthma. I wasn’t the kid who couldn’t play sports without packing the inhaler, I was I’m used to it by now, so I remain calm. I try to take in a never rushed to an ER by a worried parent and I never short breath, gauge how severe the wheeze of breath got the sniffles and itchy eyes around flowers or from squeezing through my lungs is, and I clear my throat. I dust or the numerous pets we adopted. My symptoms take several more breaths, deeper now, hoping it is just a started when I was 19. slight irritation and I’ll be able to drift back to sleep without getting out of bed. So far, this is just wishful, In the summer of 2007, I came down with what I dreamy thinking. I always have to get up. thought was a nasty respiratory disease which kept me up all night hacking and wheezing. Some nights, instead I slip out of bed, walk to the medicine cabinet in the of getting rest, I would walk downstairs and then pace bathroom, and grab my red emergency inhaler for quick around outside in the cool night air until my lungs relief. I breathe out, my chest wheezes and constricts would calm down enough for me to return to bed. Hesi- and I cough. I haven’t exhaled all the air in my lungs, tant to see a doctor at the time, I looked online to seek but with my next breath, I’m inhaling a misty steroid to answers. My symptoms seemed to indicate bronchitis. stop my bronchial tubes from swelling any further. In It’ll go away, I thought, so I stocked up on cough sup- the next few minutes, the muscles relax and sweet, fresh pressants and Nyquil. air fills my lungs once again. But after a month of coughing, wheezing, and generally Asthma, as I recently learned, is classified as a disability feeling like I was suffocating in open air, I decided it by the Americans with Disabilities Act (ADA). Disabili- was time to go to the doctor. (It probably didn’t hurt that ties are defined by impairments that limit one or more my boyfriend threatened to leave me if I didn’t go.) “major life activities.” Since breathing, apparently, is a major life activity, those suffering from asthma are also At the clinic, my pulse was taken, my blood was drawn

16 ABILITY and my chest was X-rayed. On the scan, large spots each other. When I found him as a kitten wandering appeared, which my doctor explained were patches of around a Walgreens late at night, I didn’t know if I dead air that I wasn’t exhaling. Since I couldn’t get rid could keep him. In a few days I would be starting work of that dead air, I couldn’t inhale fresh air to replace as a resident assistant at my college dorm where pets it, which is why I felt like I never got enough air, no were strictly forbidden. But I know what it’s like to be matter how many breaths I took. When my lungs were homeless, and I know how cold Chicago gets in the irritated, my airways would swell and restrict my air winter, so I took him in, against the rules. intake even more. My doctor put me on a bronchodila- tor and gave me a prescription for a daily steroid to be Through the very challenging, stressful months that fol- taken once every four hours for the first few days, then lowed, Basil was always there to curl up on my lap and twice a day after that. The prescription included my cuddle with me when I was down. Because he needed trusty red emergency inhaler for when the other med- me, I kept him. And even when the staff found out ication wasn’t enough. about him and I lost my job and my apartment, I took him with me. We crashed on friends’ couches and even- One week later, the results from my blood test proved tually moved in with my boyfriend and his cat, Rodney. decisively that I was allergic to my two cats. The doctor I wasn’t going to give up on this little cat. The way I was quite clear about this: “ You should get rid of your saw it, he never gave up on me either. cats,” she said. Today, my asthma is, for the most part, under control. As any animal lover would know, this was an incredibly My allergies to my cats have actually subsided. difficult decision to make. After all, I’d had my cats Although I am still very allergic to other people’s pets, I longer than I had asthma, and I had never experienced have fewer asthma attacks. Maybe someday it will go any other allergic symptoms. I took the medication as away completely. Maybe it will never go away. What prescribed, added over-the-counter allergy meds to the I’ve learned that’s really important: never to let a dis- mix, and capped off my sleepless nights with a handy ability take away the things in life that give you joy, dose of albuterol. I am certain this would have been an even if that involves carefully regimented drugs, learn- easier process if Basil did not insist upon sleeping with ing a new way of doing things, or fighting against the me every night; but cats will be cats! people who say you can’t. You can. Your cat will appre- ciate it too. See, here’s the thing about Basil: he and I take care of by Dana Nelson lungusa.org

ABILITY 17 But many do not know that an independent living movement led by Ed Roberts also took root at Berke- ley in the early ’60s.

The university hesitated to admit Ed because of his dis- ability. Because he had contracted polio as a teenager, he had virtually no functional movement and was dependent on a respirator to breathe. “We’ve tried crip- ples before and it didn’t work,” said the university. They reluctantly admitted Ed in 1962 and arranged for him to live in the campus medical facility, Cowell Hall.

Ed was quick to grasp that the struggle for independence was not a medical or functional issue, but rather a socio- logical, political, and civil rights struggle. Additionally, Ed’s involvement with Gini Laurie’s Toomey J. Gazette (later named the Rehabilitation Gazette) reinforced in his mind that credible information and new, innovative ways of managing life with a severe disability were best relayed by peers with similar disabilities. Gini’s publica- tions were essentially forums for people with polio and various disabilities to share how they managed their lives and maintained their productivity with severe disabili- ties. This notion was the basis for development of the Independent Living Center (ILC). Today, there are hun- dreds of ILCs that exist throughout the country.

ILCs work with people with disabilities of all ages and all disability types. Core services include peer counsel- ing, independent living skills counseling, information and referral, and advocacy. Other services offered include helping people transition out of nursing homes, housing, personal assistance care and technology. All programs, in one capacity or another, are designed to help an individual become as independent as possible.

ABILITY’s Chet Cooper spoke with Louis Frick, the new director of Califonia’s State Independent Living Council.

Cooper: What is the role on the State Independent Living Council?

Frick: Every state has what’s called a SILC, State Inde- pendent Living Council. The SILCs are run by a gov- ernment agency, so they’re funded and staffed that way. Calfiornia’s SILC is run by the state Department of Rehabilitation. The goal of the SILC is to provide a variety of programs, a variety of initiatives throughout the whole state that will give individuals the ability to live independently. So as one of the Independent Living alifornia is often looked at by the rest of the Centers in California, we play more of a local role, country and maybe the world, as a leader and whereas the SILC provides more of a directive on a Can innovator. In the ’60s and ’70s Berkeley statewide level about how programs and services are was known as the home of radical politics and pro- provided for people with disabilities. gressive social movements. Mario Savio and the 1964 free speech movement set the tone that led to the Cooper: Do you provide certain parameters that an ILC development of the model for the Yuppies and the should meet? What are some of the nuts and bolts of this? Black Panthers, particularly influencing UC Berkeley campus anti-war movements and tactics for student Frick: Sure. That’s a great question, because every three involvement in ethnic and racial social movements. years, each SILC has to create a state plan for indepen-

18 ABILITY dent living or SPIL. Right now, California’s SILC is Frick: Absolutely. That happens in a couple of ways. working on laying the foundation for the SPIL that will Aside from the SILC, I’m also a member of a statewide be taking effect starting in 2011. So, we’re in the process organization which is similar to a trade organization. of setting up various focus groups, holding meetings There are 29 ILCs in California. Most of those, our center around the state to gather input from people with all included, are members of a statewide organization called types of disabilities, with all type of needs. Once that the California Foundation for ILCs. All of the center information is gathered and distilled, there will be a directors who are members sit on the board of the SILC three-year state plan created which will be a directive for and we meet three times a year and have conferences what gets doneover the next 30 years by ILCs and other where we talk about best practices within the ILCs. organizations that provide services to people with dis- abilities statewide. Cooper: And on the national level, you’re part of the National Council of Independent Living (NCIL)? Cooper: This happened three years ago as well, and every three years you refine it? Frick: Yes, I’m a member. I spent six years as a board member for NCIL until a week and a half ago. I’ve cho- Frick: Either refine it or in some cases really redo it. sen to step off that board and focus my efforts more Right now we’re a little more than halfway through the locally on a statewide level. However, I’m still a mem- current plan, which is 2008, 2009, and 2010. Some of ber of NCIL and on a number of subcommittees. the issues are set forth in the plan we’re working on. If those have been completed, they may come off of the Cooper: So you know John Lancaster. list in the next plan, or they may be revised if there’s additional work that needs to be done. I’ll give you an Frick: I was on the committee that hired John as the exec- example of that. utive director six years ago, and John actually just retired last month. The board chair for NCIL, Kelly Buckland, In the current plan, one of the things needed on a was recently hired as the new executive director to take statewide level was to do community organizing with over for John Lancaster. We just had our annual confer- underserved populations of people who have disabili- ence, so all those changes have just taken place. ties. So for example, we have a program called the His- panic Community Organizing Project. Our goal is to Cooper: I’ve known John for many, many years. Darn, work with people in the Hispanic community who have I’m getting old. Did I read something that said there’s disabilities and work with their specific issues, whatev- actually extra funding for the ILCs in California? er is important to this very small group. Within the small groups around the counties, each group is in a Frick: Yes. As a matter of fact, on the national level, particular neighborhood, and that group determines that’s really the result of NCIL’s work. When the stimu- what their specific issues are. So it might be safety in lus package was approved, it included an increase in crossing streets or it might be learning how to interact funding for ILCs over the next couple of years. So, fed- with law enforcement. At a very grassroots level, this eral money will go directly to the centers in October. program is designed to work with various disenfran- The Department of Rehab has also been awarded chised groups of people who have disabilities. increased funding through another component of the stimulus package. So there will be quite an influx of Cooper: Is it disability-centric? Does the SILC address additional funds to centers and to statewide organiza- disability issues at a group level, or is it individual? tions over the next couple of years.

Frick: It’s a little of both, frankly. In some cases it really I’ve been voted by the majority of the center directors becomes very individualized, because if somebody is around the state to represent them on the SILC, and I’m deaf or hard of hearing, their needs can be very different really excited to be part of the development of the new from somebody who has a visual impairment. We’re state plan. Just in the last two minutes of our conference almost three years into this program, and we’ve learned call, we started to lay the foundation to make that suc- that it really is a very individualized thing. First of all, cessful. With the new stimulus money and all this new you’re dealing with these very small groups, and within energy and invigoration in the movement, I think this is those groups, different people have different needs. So it an awesome time to be involved in the development of really is very customized, depending on the group and this new plan. Earlier you mentioned ABILITYJobs.com, the individual needs within that group. What we’re doing as an example. I think employment is a huge part of that in San Diego, I know, is very different from what’s being piece. We have a tremendous opportunity to get people done in the Bay Area, for example, because they have a back to work and use the stimulus money for rehab and whole different set of things that are important to them. employment of people with disabilities. I’m eager to play a part and help move this agenda forward in a really Cooper: Do you look at the different ILCs across the dramatic way over the next few years. state and discuss best practices with other ILCs during conferences? calsilc.org a2isd.org

ABILITY 19 he United States signed the Convention on the willingness to work, but by physical conditions that Rights of Persons with Disabilities (CRPD) at unfairly limit their access to jobs, education, and the TUnited Nations Headquarters, July 30, 2009. US public life of their community. This is, as many of you Ambassador to the United Nations, Susan Rice signed in this room know so well, an occurrence that happens the CRPD on behalf of the US. This Treaty, the first every minute of every day. I see it not only in our coun- human rights convention of the 21st century adopted by try, but throughout the world. the United Nations, advances the human rights of 650 million people with disabilities worldwide. It fosters I’m proud that the United States has set such an exam- equal protection and equal benefits under the law for all ple, and many of the pioneers who helped to both craft citizens. It rejects discrimination in all its forms, and and pass the Americans with Disabilities Act [ADA] are calls for the full participation and inclusion in society of here today for this next chapter. What we are doing now all persons with disabilities. with the UN Convention on the Rights of Persons with Disability, is sending a clear message that the United The United States joins 141 other countries that have States, as part of our foreign policy, will work to remove signed this Convention in pursuit of a more just world. barriers and create a world in which people have the President Obama will soon submit it to the Senate for dignity and pride that they deserve. [applause] consideration and approval. And this Convention makes absolutely clear that dis- A week before the UN signing, President Obama took a crimination against people with disabilities isn’t only an new step forward for our country and announced that injustice, it is a strain on economic development, a limit the United States would sign the CRPD. Following are to democracy, a burden on families, and a cause of the speeches that Secretary of State, Hillary Clnton and social erosion. By providing this blueprint for ending the President gave in anticipation of the signing. discrimination, the UN Convention will improve our world by many measures. HILLARY CLINTON Now, we have come a long way in the 19 years since It is not surprising that among the priorities that Presi- ADA ushered in a new era of opportunity for our citi- dent Obama has set for us is a commitment to people zens, and this Convention points out how much further with disabilities, and it is an example of what we are we have to go. I’m going to make sure that this Conven- trying to demonstrate and achieve throughout the world. tion is reflected in our policies around the globe, Because for hundreds of millions of people, the future is [applause] and to that end, I intend to ask our Bureau of determined not by the scale of their ambitions or their Democracy, Human Rights, and Labor to make the core

20 ABILITY for people with disabilities a central element in the State global commitment to fundamental human rights for Department’s strategy worldwide to ensure that we persons with disabilities. I’m also honored to mark the carry out the Obama administration’s goal of spreading anniversary of the historic piece of civil rights legisla- opportunity and standing against injustice whenever and tion with so many of the people who helped make it wherever we see it. possible. And I’d like to reflect on that for a few moments. So we’re proud at the State Department to be part of this effort. And of course, we wouldn’t be here were it not I’m reminded today of my father-in-law, some of you for the President’s strong support, support which he have heard this story, Fraser Robinson. He was expressed during his election campaign and support Michelle’s hero. When you talk to her about her dad, which he has turned into reality by pushing all of us to even today, she just lights up. He was a vibrant and ath- make sure that we acted. The 19th anniversary of the letic man who provided for his family as a shift worker signing of the Americans with Disabilities Act [ADA], at a water treatment plant in Chicago. In his early 30’s, as all of you know, falls on July 26th. And so what more he was diagnosed with multiple sclerosis. And even as it fitting opportunity could there be than for our President progressed, even as he struggled to get dressed in the to assert his personal and our nation’s commitment to morning and used two canes to get himself to work the UN Convention? It is a great honor and privilege for every day, despite the fact that he had to wake up a little me to be able to introduce President Barack Obama. bit earlier and work a little harder to overcome the barri- [applause, cheers] ers he faced every day, he never complained. He never asked for special treatment. He just wanted to be given PRESIDENT BARACK OBAMA the opportunity to do right by his family. Never missed a day of work. He would have trouble buttoning up his Thank you. Thank you. own shirts, but he would make sure he woke up in time to do it. First of all, how about my Secretary of State? [applause] She is doing an unbelievable job. She’s traveling all And by the time I met him, he would struggle with those around the world delivering a message that America is two canes, but even if he had to go over a bumpy patch back and ready to lead. And everywhere she goes, she is of grass to watch his son’s ball games or go up a flight representing us with grace and strength and we are very of stairs so that he could see his daughter dance, he fortunate to have her. would do it. This was before the ADA passed.

I’m also lucky to have an outstanding Attorney General I think about him all the time when I think about these in Eric Holder. [applause] My Secretary of Labor, who’s issues. It’s a reminder of the very promise of the ADA. committed to these issues, Hilda Solis. [applause] 19 years ago this weekend, Democrats and Republicans, We’ve got a couple of governors in the house. At least I advocates and ordinary Americans, came together here see one of them over here, Governor David Paterson. at the White House to watch President George H.W. [applause] And I think that Christine Gregoire was here. Bush sign the ADA into law. Folks traveled from all There she is. [applause] Of Washington State. I want to across America to witness a milestone in the long march thank the outstanding members of Congress who are on to achieve equal opportunity for all. But like all great the stage: Senator Dan Inouye, Representative Steny movements, this one did not begin or end in Washing- Hoyer, Representative Robert Andrews, Representative ton, DC. It began in small towns and big cities across James Sensenbrenner, Representative Jim Langevin. this country. It began with people like Fraser Robinson Thank you so much. [applause] showing that they can be full contributors to society, regardless of the lack of awareness of others. It began And not on the stage but extraordinarily important are when people refused to accept a second-class status in three key figures who helped to get the original ADA America. It began when they not only refused to accept passed. I want to acknowledge them. the way the world saw them, but also the way they see themselves. First of all, not able to attend, but this guy is a fierce warrior on behalf of the disabilities community, Tom When quiet acts of persistence and perseverance were Harkin. He couldn’t be here. [applause] Another person coupled with vocal acts of advocacy, a movement grew, who could not be here but was instrumental in guiding and people marched and organized and testified, and the passage of this landmark legislation, Bob Dole, but parents of children with disabilities asked why their his wonderful partner Senator Elizabeth Dole is here. children, who had the same hopes and dreams as chil- [applause] And Attorney General and somebody who dren everywhere else, were left out and left behind. worked very hard on this issue, Richard Thornburgh. Wounded veterans came home from war only to find [applause] that despite their sacrifice for America, they now felt excluded from America’s promise. Welcome to the White House. We are thrilled to have you all here for an historic announcement regarding our We had a little meeting before we came out, and Tony

ABILITY 21 Coelho, who was instrumental on this issue, spoke in children with disabilities don’t attend school. Women just incredibly moving terms about what it meant for and girls with disabilities are too often subject to deep him to be an epileptic and the fact that discrimination discrimination. Disability rights aren’t just civil rights to was rife. He was rejected from the priesthood because be enforced here at home, they’re universal rights to be that was considered unacceptable. He was rejected from recognized and promoted around the world. the army because that was considered unacceptable. Those experiences could have just been internalized, And that’s why I’m proud to announce that next week, and people could have felt doubt, but instead it became the United States of America will join 140 other nations a source of strength, and step by step progress was won. in signing the United Nations Convention on the Rights Laws were changed. Americans with disabilities were of Persons with Disabilities. [applause, cheers] The first finally guaranteed the right to vote, a right that only has new human rights convention of the twentieth century. meaning when you can enter the voting booth to cast This extraordinary treaty calls on all nations to guaran- that vote. Folks were extended certain protections from tee rights like those afforded under the ADA. It urges discrimination and given the rehabilitation and training equal protection and equal benefits before the law for to go to the job. all citizens, reaffirms the inherent dignity and worth and independence of all persons with disabilities worldwide. Even though we still have a long way to go with regard I’ve instructed Ambassador Susan Rice to formally sign to education, children with disabilities were no longer the Convention at the United Nations in New York next excluded, no longer kept separate, and no longer denied week, and I hope that the Senate will give swift consid- the opportunity to learn the same skills in the same eration and approval to the Convention once I submit it classroom as other children. for their advice and consent.

Now, even two decades ago, too many barriers still Even as we extend our commitment to persons with dis- stood. Too many Americans suffered under segregation abilities around the world, we’re working to deepen that and discrimination. Americans with disabilities were commitment here at home. We’ve lifted the ban on stem still measured by what folks thought they couldn’t do, cell research. We’ve authorized the Children’s Health not by what they can. Employers often assumed “dis- Insurance Program, continuing coverage for seven mil- abled” meant “unable.” Millions of Americans with dis- lion children and covering of an additional four million abilities were eager to work but couldn’t find a job. An children in need, including children with disabilities. I employer could have told a person with a disability, was proud to sign the landmark Christopher and Dana “No, we don’t hire your kind.” That person then could Reeve Paralysis Act, the first piece of comprehensive have tried to find recourse at the courthouse, only to legislation specifically aimed at addressing the chal- find that she couldn’t enter the building, and wouldn’t lenges that are faced by Americans living with paraly- find a receptive audience even if she did. sis. We’ve nearly doubled funding for the Individuals With Disabilities Education Act. [applause] We’re What was needed was a bill of rights for persons with strengthening anti-discrimination enforcement at the disabilities, and that’s what the ADA was. It was a for- Justice Department. We’re creating a new Special Assis- mal acknowledgment that Americans with disabilities tant position at the Department of Transportation just to are Americans first, and they are entitled to the same focus on accessible transportation. [applause] rights and freedoms as everybody else, a right to belong and participate fully in the American experience, a right We’ve launched the Year of Community Living to to dignity and respect in the workplace and beyond, a affirm the fundamental right of people with disabilities freedom to make of our lives what we will. In a time to live with dignity and respect wherever they choose. when so many doubted that people with disabilities [applause] So I’m proud of the progress we’ve made. could participate in our society, contribute to our econo- my, or support their families, the ADA assumed they But I’m not satisfied, and I know you aren’t, either. could. Americans with disabilities didn’t ask for charity Until every American with a disability can learn in or demand special treatment, they only wanted a fair their local public school in the manner that’s best for shot at opportunity. They didn’t want to be isolated, they them, until they can apply for a job without fear of dis- wanted to be integrated. Not dependent but independent. crimination and live and work independently in their And allowing all Americans to engage in our society communities, if that’s what they choose, we’ve got and our economy is in our national interest, especially more work to do. As long as we as a people too easily now, when we all have a part to play to build a new succumb to casual discrimination or fear of the unfa- foundation for America’s lasting prosperity. miliar, we’ve still got more work to do. As we continue that work, we should remember just who it was that the So the ADA showed the world our full commitment to ADA was all about. It was about the young girl with the rights of people with disabilities. And now we have cerebral palsy who just wanted to see a movie at her an opportunity to live up to that commitment. Today local theater but was turned away. It was about the 650 million people, 10% of the world’s population, Vietnam veteran who returned home paralyzed and said live with a disability. In developing countries 90% of he felt like he’d fought for everyone but himself. It was

22 ABILITY about the thousands of people with disabilities who know was that President Roosevelt’s disability made showed up at public hearings all across the country to absolutely no difference to his ability to renew our con- share their stories of exclusion and injustice, and the fidence or rescue our economy and mobilize our great- millions more they spoke up for. est generation to save our way of live.

Because they did, we live in a country where our chil- Let me correct that. I actually think it did make a differ- dren can grow up with every opportunity to learn and ence in a positive way. What he told us was that further compete, where our disabled veterans returning from progress must, of necessity, depend on a deeper under- Iraq and Afghanistan can navigate public places more standing on the part of every man and woman in the easily, and where 54 million Americans with disabilities United States. I believe we’re getting there, and today, can pursue their full measure of happiness. And what because more than one in five Americans live with a we’ve learned, what they have taught us, is that it is far disability, and chances are the rest of us love somebody more noble and worthwhile and valuable to make it pos- with one, we remember our obligations ensuring their sible for these Americans to live up to their full poten- every chance to pursue the American dream. We cele- tial, because when we do, it makes all of us more whole. brate the courage and commitment of those who brought It makes our union more perfect. It makes the United us to this point, and we recommit ourselves to building States of America strong. a world free of unnecessary barriers, full of that deeper understanding. Every morning I walk along the colonnade that connects this house to the Oval Office. There’s something you So thank you all for being here, and let’s sign this bill. might not notice unless you’re really paying attention, [applause] and I’ll be honest, when I take that walk, I usually have a lot on my mind. [laughter] But there’s a gentle slope at the end of that colonnade, a ramp that was installed dur- ing the renovation of the West Wing 75 years ago, mak- ing it much easier for one of my predecessors to get to work. Back then, fear and prejudice towards Americans with disabilities was the norm, but most Americans did- n’t even know that President Roosevelt had a disability. And that means that what most Americans also didn’t

ABILITY 23 Zabel Maior gives President Lula the Convention, for him to pass on to Congress to be ratified. Secretary of Human Rights, Paulo Vannuchi, looks on.

n 2007, an election year full of internal political tur- The President of Congress set the vote as a priority, but moil and very few votes in the Brazilian Congress, the process was stuck at a special commission to ana- Ithe movement of people with disabilities set an lyze the document; unfortunately, the commission did example of citizenship, organization, union and strength, not have enough members to start working. by managing to pass—in a record time of nine months— the Convention on the Rights of Persons with Disabili- BUILDING UP A STRATEGY ties (CRPD). Because of its constitutional status, the CRPD required a 3/5 majority approval in two votes In the meantime, many countries were concluding their from each house—House of Representatives and Senate. ratification processes and it looked as if Brazil wouldn’t be among the first 30 countries to approve the document Activists from all areas of disability, government agen- and was at risk of being left out of the first Party States cies and the social movement, got together and showed Conference. The delay would mean losing the possibili- Congress that 14.5% of the Brazilian population—the ty to include a candidate for the monitoring committee. biggest and most excluded minority in Brazil—pos- sessed the determination and political strength to ratify At that time, I was diagnosed with breast cancer. the first human rights treaty of the 21st Century. Although the diagnosis pulled me away from CORDE, it gave me more time and freedom to act virtually, I had the joy and honor to actively participate in that through the Internet. Using Inclusive, a free blog that I process. During that time, I was able to wear my many created to post news related to disability issues and to hats: advisor at the National Disability Agency, National provide content to promote inclusion, I started produc- Coordination Office for the Integration of People with ing news about the Convention. I posted alerts regarding Disabilities, CORDE, headed by Izabel Maior; citizen the Convention and passed it on to the press and discus- and activist for the rights of persons with disabilities; sion groups on disability issues. I suggested that people journalist; and coordinator of Inclusive—Agency to Pro- call or write their representatives, urging them to vote at mote Inclusion, a news and content agency that covered the Convention. Together with activists from other every step of that challenging journey. states—Ana Paula Crosara, Fabio Adiron, Claudia Grabois, Marta Gil, Lais Lopes, Flavia Vital, Barbara My primary motivation for being there was for my Kirchner, among many others—we joined forces with daughters, Amanda, my 5-year-old with Down syn- the movement Sign Inclusion, a web manifesto that was drome, and her older sisters, Luiza and Cecilia, who already collecting signatures for the Convention ratifica- have all brought much delight to my life. tion. The National Council for Persons with Disabilities Rights joined in, and we had a virtual strategy meeting On September 21, 2007, to celebrate the Brazilian through Skype to find ways to achieve what, at that National Day of Fight of Persons with Disabilities, time, seemed so far away. CORDE promoted a TV program in partnership with Bank of Brazil, aired by the government TV channel Inclusive became our main tool to promote the Conven- throughout the country. The Minister for Human Rights, tion. I translated UN documents and resources from their Paulo Vannuchi, opened the program, announcing that Enable website into Portuguese and posted them on President Lula sent the Portuguese translation of CRPD Inclusive. I visited Enable every day to see if any more to Congress, with the recommendation that it would be countries had ratified. I scoured the Internet for any and treated like an amendment to the Constitution, to guar- all news on the subject, and then translated and distrib- antee the highest status possible. Specialists in the Con- uted that to the media. I even uploaded a poster saying, vention spoke at the program and answered questions by “Ratify Now!” followed by the number of signatures for the viewers. ratification, and the question, “What about Brazil?”

24 ABILITY We produced and distributed a Mourning Letter to all abstentions and no vote against, the CRPD was congressmen, expressing our dissatisfaction for the approved on the first round of voting in the House of delay. We urged everyone to do their part, calling and Representatives. We got what we wanted! And on a sym- writing to their representatives and asking when they bolic date as well: May 13, when we celebrate the Slav- would vote on the matter. At the end of April in Sao ery Abolition anniversary in Brazil. It felt like the Con- Paulo, during Reatech, the biggest Rehabilitation Fair in vention represented the same freedom to Brazilians who Latin America, many contacts were made and new sup- live with disabilities.” port signatures for the ratification were collected. SECOND ROUND IN THE HOUSE OF REPRESENTATIVES On May 3, many groups went to the streets in Rio, Brasilia, Uberlandia, Salvador and other towns, to col- After that, we raced against the clock to escape the leg- lect signatures in favor of the ratification. islative recess and the upcoming elections. We kept up the pressure and got the second round of voting com- FIRST ROUND IN THE HOUSE OF REPRESENTATIVES pleted in two weeks. We expected a quiet day, but it turned into the most tense vote we had ever had to face. After all those efforts, the need for the special commis- Again I refer to my notes of the day: sion was overturned and the first vote was set for May 13. However, the fight was only beginning. An elite “With 353 votes in favor, none against and 4 absten- squad of persons with disabilities, along with their rep- tions, despite all odds, we succeeded in approving the resentatives and activists, gathered in the House of CRPD last night in the second round. The qualified quo- Representatives to convince members that we wanted rum (more than 3/5 of representatives) guarantees the the CRPD to receive Constitution amendment treat- Constitutional status. The document now goes to the ment. That is, the CRPD should not have just a single Senate, where it also has to be approved twice by a 3/5 vote like any other bill. Constitution amendment treat- majority. ment would be historic. The representatives were resistant, but the presence and determination of each The beginning of the day was filled with tension. The one of us would make it happen—we were the “lobby- night before, we had heard that opposition would ists for good.” obstruct all votes as a political artifice. We started call- ing party leaders to accelerate CRPD’s vote to avoid As I returned from Congress later that night, in the heat obstruction. But the fight was fierce—the government of the excitement, this is what I posted on Inclusive: wanted to approve an addendum for health and the opposition wanted to block it. Passage of the treaty “Dear all, I just came back from the historic first vote of seemed bleak. In a meeting with movement members at the CRPD in the Deputy Chamber with my spirits high lunch time, the President of the House of Representa- from a majority of 418 votes for approval, 11 absten- tives made it clear to us that the situation was much tions and no vote against it. The pressure of the social more difficult than the previous round, and that he movement was crucial to what we wanted. We had an could not guarantee that the CRPD would get to a vote expressive participation of persons with disabilities and by the Senate. their representatives in the House today. In the morning, the leaders’ meeting had approved that the Convention We were re-energized, however, with the presence of would be voted today, but it made no remarks about the activists from other states at a preparatory meeting for 3/5 majority needed for two rounds of voting. We divid- our national conference the day before. Our lobby for ed ourselves into groups and went to the parties’ lead- the ratification of the CRPD, consisting of united per- ers to explain that we wanted the Convention to be sons with every kind of disability from governmental voted as an amendment to the Constitution or not be and non-governmental organizations, felt strong. voted on today at all. The leader of minority party thought it was difficult to pass it in that way. PSDB The book The Convention on the Rights of People with [Brazilian Social Democratic Party] also challenged Disabilities with Comments, launched by the Ministry of the process. We had to have a long talk with the leaders Human Rights early in the afternoon, was a powerful and also with each representative to ensure our desire tool in the hands of activists as each one approached for ratification. and talked to the representatives of their respective con- stituencies. After many speeches about how the subject should be tackled, the President of the House, Arlindo Chinaglia, Many times there were indications that the vote would was firm and supported that the treaty would be equiva- not occur and that we should go home. I went to the lent to the Constitution, and that the text would be kept Press Committee to distribute a press release I had pre- intact. That would constitute a new juridical element in pared, documenting the Convention, and even the jour- Brazilian law. nalists said that there was no chance the CRPD would be voted on that day. But we were a persistent group of The vote finally took place. With 418 votes in favor, 11 people. We didn’t move, and continued putting pressure

ABILITY 25 ABILITY 27 Center: Zabel Maior, together with activists, meet with government officials to move the CRPD forward.

disabilities, all of them per- sons with disabilities them- selves, who told senators about the Convention. The Senate President was present and on the occasion, guaran- teed that the treaty would be voted as quickly as possible. The following week, during on congressmen and party leaders. Many of them made the session at the External speeches at the tribune, arguing that the CRPD should Relations Commission, Senator Eduardo Azeredo voted be voted on that night. We started to feel that all of our in favor of the document. On July 3, 2008, the Senate efforts were finally being effective. Late that night, some approved the Convention with two sessions on the same congressmen brought us a proposal of a safe vote as the day. My notes published on Inclusive that day: first item the following week, because they feared that, at that point, the quorum would not be high enough. We “Brazilians with disabilities get the first international refused the offer. There was another proposal by the treaty with Constitutional power in the country’s histo- leader of the minority party, Zenaldo Coutinho, that a ry. Unanimously, Senators approved the Convention on new session was open, to verify quorum. If there were the Rights of Persons with Disabilities and its protocol, more than 350 members—a good margin that would thus guaranteeing for the first time in Brazil’s history, guarantee approval, they would vote it. Otherwise, we Constitutional strengh to an international treaty. would leave it for the following week. We agreed to it. The congressman took the proposal to the stand and it With 60 votes in favor on the first round and 56 on the was accepted. The President then started to call the second, on a thrilling and uncommon night, the CRPD House Representatives to achieve quorum at the voting was approved. This crowned the efforts of the movement room. Each member who showed up was applauded by of persons with disabilities, who left their differences, a large group of CRPD supporters at the entrance of the political preference and regionalisms aside, to fight for voting room. a common cause.

In an emotional and historical session, with 353 votes Many steps contributed to the successful vote: There in favor, none against and 4 abstentions, the CRPD were high level actions such as President Lula’s recom- was approved. Many congressmen came to greet us mendation to give Constitutional status to the Conven- and said this would never have been possible without tion; meetings with House of Representatives President, our strong and determined presence and pressure. We Arlindo Chinaglia; Senate President, Garibaldi Alves, managed, on a politically tense and complicated day, and leaders from all parties in both houses; emails, let- to gloriously achieve one more step in the CRPD rati- ters and phone calls to congressmen; and supportive fication process. signatures to the Sign Inclusion petition.

We take this opportunity to thank every representative The successful process demonstrated how each action who helped with the approval. We also thank those for the ratification was vital. The right to fully exercise activists who could not be in Brasilia, but called and each one’s citizenship is so much more powerful when wrote to their representatives. Your help ensured the his- we unite around a common goal. toric approval of the CRPD. This victory makes me believe that the inclusion of per- LET THE SENATE COME sons with disabilities in all aspects of society, in equal conditions, is not only possible, it is attainable when we In the Senate, the process was calmer. Our only enemy join forces and fight together. was time. We had to avoid the typical Brazilian festivi- ties in June, when there is a recess at the Senate. A visit To all my fight companions: My warm and emotional by Izabel Maior with the Senate President, Gabibaldi regards. Alves, helped to accelerate the process. But the treaty by Patricia Almeida had to go through two commissions—Human Rights and External Relations—before it was sent for a vote. agenciainclusive.wordpress.com The session at the Human Rights Commission was a assinoinclusao.org.br public hearing with the participation of specialists on

26 ABILITY Blair Webb volunteers on an ABILITY Build

n June 17, 2009, I had an extremely inspiring ABILITY Corps experience was like walking into an and motivating experience. The obvious expec- alternate dimension: where people with disabilities are Otation is that I would be referencing my high valued as much as any other individuals. Being in a school graduation, which took place that afternoon; but wheelchair, I have always been nervous about new envi- that’s not the case. While the majority of my peers were ronments. However, at the ABILITY Build, I immedi- busy primping for the pomp and circumstance to come, ately felt comfortable, because I was treated with noth- I spent my morning in a different part of town with ing but respect. The crew leaders on site saw past my ABILITY Corps, helping other volunteers from Habitat disability and focused on what I could do rather than for Humanity of Greater Los Angeles to refurbish a what I could not. Although it took some creative maneu- house through their “Brush with Kindness” project. vering from a couple of ABILITY Corps team mem- bers, we were able to position the power washer tool in There was an endless amount of work to be done that a way that made it possible for me to hold it between day, ranging from roof repair to prep work for painting. my legs and use my hands for support. The set-up The other ABILITY Corps volunteers with disabilities worked and the team would not even let my aide help and I hammered away, repaired the roof, pressure- me as I prepped an entire wall to be painted. This felt washed the walls and did whatever we could to lend a empowering and freeing! helping hand. Daily, hundreds or maybe thousands of volunteers are working on Habitat for Humanity builds One huge benefit of this phenomenal program is that it across the nation, but I always thought it would be gives people with disabilities a chance to give back to impossible for me to actually have that experience. the community, by bettering the lives of impoverished families. The ABILITY Corps is providing people in the As a person with cerebral palsy (CP), I am not afforded disability community the opportunity to soar above good hand coordination and, consequently, have never society’s expectations by giving us the chance to actual- done much physical work. As a matter of fact, my mus- ly participate in making the world a better place. cles won’t allow me to cook, clean, speak clearly or even write on my own. But with the use of assistive I learned two invaluable lessons about myself that day. technology, I am able to access my computer to submit When I was able to independently manipulate a pressure this article. Regardless of my disability, I have always washer, I proved that my body can do more than I loved community service but have never found an thought. In addition, this experience taught me that any agency where I could serve the less fortunate alongside dream has the possibility of becoming a reality. I now my peers. know for certain that people with disabilities can do whatever they may desire if presented with the right I used to be involved with a social group for teenagers opportunities and support. who used wheelchairs, that actually fed into the stereo- by Blair Webb type that we were helpless victims of our disability. At a recent holiday party, well-meaning firemen were brought in to deliver new toys to us, even though most of us were between 14 and 18 years old. It felt absurd to be treated like young children rather than being provid- ed with the opportunity to give to others, which would have been far more rewarding.

With events like the graduation party on my mind, the

28 ABILITY ABILITY 29 inding a job is not easy work. But as executive autism or mental retardation or visual or hearing director of the Marriott Foundation for People impairment. The disability itself doesn’t matter, Fwith Disabilities, Tad Asbury has helped a count- because we’re focused so much more on getting them less number of high school students with physical, into work, letting them know that there is a place for developmental and learning challenges find their way them in the world of work if we can find a connection into the competitive working world and onto a path of for them and for the employer. personal achievement. With branches in seven major metropolitan areas, Marriott’s Bridges Program serves ABILITY: So Marriott tapped you? Or did you reach out 1100 students every year, guiding them to strong work- to them? ing relationships with employers. ABILITY Magazine asks Asbury what makes the Bridges Program work. Asbury: I was tapped to come in and help lead the organization, shaping it for the future. This job has ABILITY: When did you join the Marriott Foundation? been a great fit for me, personally. It’s very close to my house, so that was great. (laughs) In a city like Asbury: I joined the organization in 2003, after a num- Washington, DC, anything with a short commute is ber of years in corporate philanthropy, but Marriott wonderful. And from Marriott International headquar- started serving its first youth with disabilities in 1990. ters here in Bethesda, we manage the program in sev- So we’re now coming up on that magical 20th anniver- eral other cities around the country. The Bridges pro- sary, and we’ve now served about 15,000 young people gram is run not just in Washington, DC, but also in with disabilities, helping them make those first and crit- Los Angeles, San Francisco and Oakland. We have ical moves out of school and into the world of work. offices out there, we have an office in Chicago, Dal- These are kids with disabilities that range from mild las, Philadelphia, Atlanta, Washington, and Mont- learning disabilities all the way through significant gomery County as well.

30 ABILITY ABILITY: If a student in high school had a learning dis- ability, how would they find you? What would happen within the Bridges program?

Asbury: All right, so let’s say you’re 19 years old—

ABILITY: We are 19. ABILITY Magazine is in its 19th year.

Asbury: (laughs) We serve kids from 17 to 22 years old, so in this scenario, you’re more than likely to learn about our program in your junior or senior year of high school. We tend to focus on high schools in urban centers, so let’s take a hypothetical high school in Compton, California. You’re a person with a learn- ing disability who may have had a series of challenges that might even go beyond his disability, including Tad Asbury, executive director of the Marriott other barriers to employment, difficult socioeconomic Foundation for People with Disabilities issues, and the like. College probably isn’t in the cards for you, in that case. Maybe in the long-term it is, but have demonstrated an ability to maintain employment, certainly not in the short-term. You’d be introduced to or if they have demonstrated abilities to be out on their our program through a transition coordinator at your own. That’s how that process works. school, or through a teacher, or maybe just through some of the workshops that we run as we partner with ABILITY: So the important thing is leading them across your school. If you have a genuine desire to go to the bridge to the other side. work, we’re going to help you opt into the program as much as we can. Asbury: Yeah, that’s the hope with all of them. Of course, there’s a myriad of challenges in working with We begin to reach out to these students through the this population. But the opportunities are so great, and school system and then, at some point, maybe even there are so many young people who are in need of through our office. Then the students would come in these services. There are about a quarter of a million and we would begin to do some diagnostic work with young people leaving high school every year, and a year them, assessing the things they like to do, the places after they leave high school, about half of them are still they would like to go. They dream, like everybody either unemployed or woefully underemployed. These else. We are all dreamers, especially at that age, and statistics are national in nature, and I would venture to our goal at Marriott is to try to help blend those say they’re even more critical in inner cities around the dreams with some realities of the world of work, and country, in the cities where we serve these youth, and in to connect those realities to employment that suits the other cities as well. student’s interests. After a series of assessments, our frontline staff–our “employer representatives”–wear a So there are many young people for us to serve, and lot of hats. They function as caseworkers with case- there are still many employers, even in today’s time of loads of young people, but they also act as job devel- economic trial. There are still positions that are open as opers. Each of those staff members is in touch with people retire, as people leave jobs. There are openings, employers who very much need entry-level workers to and we’re still, all things considered, pretty successful fill positions. in getting young people into jobs and then helping them stay in these jobs. So we’ll at some point get our students job-ready through development of their interviewing skills and I think we’ve found an awful lot of success in going resume-building skills, if indeed they need that sort of right into the community, into the employer who has a support. Many or most of them probably do. Trans- very immediate need for someone to come in at an portation is critical, too, especially in a city like Los entry-level position. We hire these students right into Angeles, as they need to be able to get to and from their the job, knowing that training can happen right there in jobs. So we’ll put them in our automobiles and get the workplace between the employer and the employ- them to those interviews and start to walk them through ee. That’s always been the focus of the Bridging pro- a place where ultimately, we hope, they would get hired gram: to center in on those competitive jobs at a com- into a competitive position with a local employer. And petitive wage. then, over the course of months in a given position, they connect with us on a weekly basis, then on a ABILITY: Have you been involved with AmeriCorps? monthly basis and then on a quarterly basis. At some point, of course, we exit them out of Bridges if they Asbury: I do know we have had periods of working with

ABILITY 31 young people coming out of the AmeriCorps programs. will not have a full-blown Bridges program with a I know in San Francisco there were a few. And we’ll director and the like, so the recovery school district staff find them jobs, maybe not even in the field that they members just stay on in their positions while delivering were focusing in on with their AmeriCorps training, but the Bridges model to youth and to the employers of the largely these young people are just coming to us and city of New Orleans. This approach bypasses the signif- saying that they need a job. As much as they might like icant start-up costs that it takes to get a program going to do volunteer work in the community, it’s still a matter in a new city. So we’re excited about those possibilities, of paying bills. When you’ve got a 17-, 18-, 19-year-old because we’re able to develop these connections with kid who, even at minimum wage may be the only bread- larger groups and to talk about some of the ways we can winner in a family with a mom, or possibly other kids to grow the program a little more. take care of, a lot of these kids find themselves taking on considerable responsibility in their family network. ABILITY: What was John Kemp’s idea for expansion? So for them, there’s a bottom line of having a paycheck. Asbury: He was very taken with what we’re doing with ABILITY: You say there were some people in the San the New Orleans school system. I was, in a sense, get- Francisco area who were coming back into the program ting an endorsement from him. He thought that what we that had already experienced some volunteer efforts? were doing was a very, good way to go for the future. And we talked about some other organizations that we Asbury: Yes, or who were involved in training programs may want to reach out to. The program is funded in part in San Francisco. But that’s more of a rare case, I would by the J. Willard and Alice S. Marriott Family Founda- say, in the population that we’re serving. We don’t see a tion, and not by the Marriott Corporation at all. It gets lot of them coming through volunteer programs, initially. seed money from the family foundation, and then I go out and raise more resources. For every dollar I get from ABILITY: Do you work with other nonprofit or for-profit the foundation, I raise an additional two dollars in gov- entities that help employ people with disabilities? Orga- ernment contracts. nizations like the US Business Leadership Network (USBLN)? ABILITY: Do you have statistics for the job retention rates of your program? Asbury: Funny you mention them. I just had lunch yes- terday with their chairman, John Kemp. We do have Asbury: Essentially, we aim at a goal that our front-line some connections with them. Still, I think we find the employer representatives are going to place 16 young most effective connection with the business community people into employment. We would fully expect that at is to go right to the places of employment, right up to least 12 of them stay at least 90 days on the job, and the managers who are hiring. When it comes to getting then we’ll monitor their results over 180 days or even kids into positions, it’s about establishing their relation- 365 days. But of those 12 that stay on the job for at least ship with the hiring manager and finding someone to 90 days, we’ll also see a series of advancements happen, satisfy that manager’s immediate employment needs. including longevity on the job, increases in responsibili- ty, additional hours on the job, and additional increases But yes, our organization is involved with groups such in wage. So we’ve got our own data that we are con- as the National Youth Employment Coalition, and we stantly monitoring, and we deliver those results back to have spoken before at USBLN conferences. I know the organizations that we contract with, like the Depart- their next meeting is in September, here in Washing- ment of Rehabilitation. ton, DC. ABILITY: When you help develop these students’ We’re really thinking of how, as an organization, we can resumes, do you also have them post them online? continue to grow a program. We’ve seen 20 years of remarkable success, really, in helping so many young Asbury: Probably not, if only because many of these people make the transition to the world of work, and in young people may not have access to the web where helping 1,000 kids a year. However, we’re still asking they live or in their community. We give them access in how we can reach out and get others to use this model our offices. I think we’re more likely to create a resume of making these proper employment matches that satisfy for them and keep it in our system so, should they need both the young person and the employer. Right now, it again, they can get it. It’s not uncommon to have there’s some training going on in New Orleans, where someone we served three or four years ago lose a job we do not have a Bridges program, but where we are and not have a copy of their resume and simply come in opening what we’re calling an “affiliated program.” and ask to have a copy. But we find that, when it comes Essentially, we’re training recovery school district to this interaction of technology and the young people teachers and transition coordinators, to act as Bridges’ we serve, there’s a considerable challenge relative to employer representatives, in much the same way that we these online job applications and questionnaires. If you might train coordinators in our offices in LA or Oakland apply for a job with Safeway or Target, you’re expected and San Francisco. But at these affiliated programs, we to be able to use a kiosk or go online and answer some

32 ABILITY questions and then fill out an online job application. The young people we serve often find that particularly chal- lenging to go through. So we assist by educating them about these systems and the process of filling out these applications. We always hope that that is information they can carry with them when they’re well beyond our Bridges program. These online application systems aren’t going to go away.

ABILITY: It seems more and more companies are taking advantage of technology to streamline their operations.

Asbury: Sure. That’s understandable. It makes a lot of sense. It’s just that it leaves a number of people even Cal Ripken and Richard Marriott more challenged to get past that screening tool. We see during a Bridges Award gala an awful lot of that. We work pretty closely with the young people to navigate them through some of those nature of, “It’s not just a philanthropic charitable effort, systems. it’s a good business decision.” And that’s ultimately what plays well for an employer. The employer wants to One of the inspirations behind Bridges, when it was help the community. He wants to demonstrate his formed 20 years ago, came from asking employers, “If involvement in the community. But the bottom line at you had to hire someone with a disability tomorrow, the end of the day is the success at making a profit, or these days, of at least breaking even. And you’re going where would you go?” And they had no answer. And to give employers a proposition that’s going to help today, because of the Internet, there’s a whole lot more them do that. You’re going to want them to hire young resources for employers to go out and find employees, people because it is a good business decision. So from but still, some people may not know how to go about that position, they can hire even more people. And that doing that. certainly is a philosophy that Marriott holds itself up to and instilled in this program since the beginning. Over the years, we’ve worked with more than 3,300 employers. It’s a great number, but there’s still a whole I think we’ve seen a shift with the Bridges program, cer- lot more employers to tell about the incredible advan- tainly since ABILITY Magazine last interviewed Mr. Mar- tages of hiring people with disabilities. It’s not uncom- riott. Originally, the notion was to get young people into mon that a kid will get hired through Bridges and the jobs or even into internships that might turn into jobs, get employer will simply come back when they have open- them up through about 90 days, and then close out the ings and say, “Who else do you have? I need more peo- case and go pick up another caseload of kids. Today, all ple for entry-level positions.” I was talking to my direc- we focus on is long-term intervention. So we have, as a tor in Dallas just yesterday, and learned that Baylor Uni- centerpiece to our efforts, something we call a career versity has hired 17 Bridges kids this year alone. Why? development plan. We develop a long-term plan for each Because the employer knows what he’s getting. He’s young person–and a lot of these kids haven’t thought getting pre-screened young people who are ready to go long-term about their own futures, if at all, so it’s a great to work. And if they have any issues relative to the pair- start for them. That career development plan is something ing of this kid with Baylor University, then Bridges is we come back to, and the intervention now is not 90 there to intervene and to help clarify the issue. If Baylor days, but up to 24 months, depending on need. That’s needs to fire a young person, we’ll say, “Go ahead and where there’s certainly been a shift in what we’ve done. fire them, because the relationship with you, Baylor University and Aramark, is far more critical than having ABILITY: It sounds like you’ve expanded your reach. someone who isn’t the right fit for the job. Then we’ll find the young person a different job and we’ll someone Asbury: If I look at the populations of kids that we else who’s a better fit for the university.” serve, it would, I think, still continue to mirror the gen- eral census population. 60% of them have learning dis- It’s great to make those connections with employers, abilities and another usually 12% to 15% have mental and once they understand this resource, they really do retardation or some sort of other cognitive challenge or embrace the possibilities. You see the advantages and developmental delay. Another 12% to 15% have emo- work from there. tional or behavioral disabilities, and the remainder pick up other disabilities, whether it be blindness, visual ABILITY: Doesn’t Richard Marriott say, “It’s just not impairments or hearing impairments and the like. But the right thing to do, it’s good business.” we find ourselves really focusing more on what a kid can do than what a kid can’t do. Asbury: Yes. He’s a great guy. He’s the chairman of our board, and I think his comment is something to the marriottfoundationbridges.org

ABILITY 33 Jerry’s rehab in Israel

uring a hike in the hills of Israel, a chance Cooper: I have to ask—why were you hiking in Israel? encounter with a landmine left Jerry White with Da new view on life. White placed his focus not White: (laughs) Like a tourist? I was the first non-Jew to on what had been taken from him, but on how his per- graduate with a degree in Judaic studies and Jewish histo- sonal experience and passion could make the world ry from Brown University. My advisor said, “Jerry, God safer for others. In 1997 he co-founded The Landmine doesn’t speak Greek or Latin in heaven. He speaks Survivors Network with fellow landmine survivor Ken Hebrew. It’s time for you to head over to Jerusalem and Rutherford. Working closely with such prominent fig- learn the language.” So I went over there with my back- ures as Princess Diana of Wales, King Hussein and pack and Hebrew-English dictionary, not knowing any- Queen Noor of Jordan, White became a leader in the thing more than “shekel” and “shalom,” wanting to walk International Campaign to Ban Landmines, and was co- in the footsteps of the prophets, and study Biblical recipient of the 1997 Nobel Prize for Peace. Today, archaeology, foreign policy of Israel, Hebrew, and a little White leads the charge in addressing the repercussions bit of Arabic as well. of violence and armed conflict across the globe. Cooper: What prompted you to set out that way? What’s ABILITY Magazine’s Chet Cooper sat down with White your own religious background? for an in-depth look at his story.

34 ABILITY White: Irish-Catholic. I grew up outside of Boston in a borders because they don’t have peace and it helps pre- town with no synagogues. I think I had my first bagel vent terrorism. That would be the generic belief of most when I was 17 years old. My sister had come back from Israelis, but many don’t understand the extent of the college with this chewy doughnut no one had ever had. problem–minefields have not been cleaned up and can be. So that’s why we were there, to raise awareness and Cooper: Those bagels will get you. get Israel to start cleaning up this military litter from all of these wars. White: (laughs) Right! Anyway, I grew up in a preppy, homogeneous, small town on the coast of Massachusetts. Cooper: Are these fields clearly signed? Are there But when I went to Brown, all the smart kids were drink- fences that say: ‘Danger-Keep Out’ or ‘Minefield?’ ing coffee, reading the New York Times, and taking Judaic studies classes. I followed some of my friends. White: When I was injured in 1984, no one wanted to No one had really told me Jesus was Jewish, so the base- believe that these areas weren’t properly signed and line of my Christian faith felt shaky, like, ‘What else fenced. There was a tendency to blame the victim. I don’t I know?’ I wanted to understand the Judaic context would say, “If I had known it was a minefield and I had of earliest Christianity to backfill my ignorance, and seen the sign or fence, I don’t think I would have gone Brown happened to have some really great professors on camping there.” But that was 1984. It wasn’t until the this front. Being a Religious Studies major, I narrowed in mid-’90s that the Israelis did a survey of all their mine- on the relationship between Judaism and Christianity, fields and admitted, in a Comptroller General report and that ultimately led me to the land where it all began. from the government of Israel, that there were, in fact, a number of minefields that were not properly fenced off Cooper: Israel? or signed. And then it took until 2004 for minefield maps to be published illustrating where the minefields White: So I studied for about one semester, and then there are throughout the country. The maps, however, were was a Passover break in the spring of 1984. A couple of only published in Hebrew, not in English or Arabic or friends and I went on a round of touring and hiking in the Russian. So there’s still work to be done. north, which was heavily forested with waterfalls and nice nature hikes. But we sort of wandered off the beaten However, even when you go up and visit some of these track. That was our flaw, our fatal step–we had turned left minefields, signs fall off or tourists take them. Barbed when everyone else had turned right. We had entered wire falls down, cattle trample them, and there are still through the unmarked back door of a minefield. instances in which people, sometimes children, are at risk while retrieving their soccer ball. For some Druze Cooper: No pun intended with the “fatal step?” families, weather floods the minefields in winter and the mines come up right into the doorsteps of their houses. White: (laughs) Luckily, it wasn’t fatal. I went back So even the minefields don’t stay put, and signs and there [to the scene] in March of this year, for the first fences don’t stay put. Therefore, the only real solution time in 25 years. I used the media, the profile of my to the problem is cleaning up the areas and de-mining. story and my return to this personal ground zero to raise awareness among Israelis about the nature of the land- All of this led me, in an unlucky time, to step on a land- mine problem in their backyard, which they don’t really mine. In the book, I describe my story of surviving, of know much about. You shock most Israelis when you having my two friends pick me up and carry me out, and tell them, “There are nearly 300,000 mines buried then of spending six months in Israel. If you’re going to throughout your country, and you have hundreds of non- step on a landmine, I recommend that you do it in Israel, operational minefields.” In March alone, when I was because it has the best trauma care in the world. I was in there, there were three new landmine accidents. a hospital in my own room, with about four guys my age. Sadly, it was normal to have lost arms or legs or Cooper: These mines are from the Israeli government? eyes because of explosions in war. At that time, in the ’80s, many guys were coming back from the war in White: Yes, some left over from Syrians. A lot of the Lebanon. Israel hospitals have an advanced technique of mines in the Golan are mostly part of Soviet-supplied, interdisciplinary trauma care, as well as the intentional Syrian-laid minefields. The specific camping area, use of peer-support, visitation, and mentoring by other where I had turned left, was a Syrian stronghold from amputees. That’s where I first learned of what, 20 years the ’60s. There are also some Jordanian-laid mine- later, would become our hallmark of work around the fieldsoutside outside Jerusalem, from when Jordan world: pioneering the use of peer-support methodologies controlled all that territory. So it’s a bit of a hodge- to improve the mental and physical health of the injured podge, depending on which area of the country you’re and of people with disabilities. talking about. Cooper: At what stage did this prompt you to create the Most Israelis understand that there are minefields in the network? Golan, and many believe that they need mines along the

ABILITY 35 Jerry with Survivor Band

White: After I returned home and resumed my studies at the issue of landmines. The first time she gave her public Brown, I worked on arms control and the nonprolifera- speech on landmines was at the Royal Geographical tion issue for about 10 years. I didn’t even think about Society in London, and we were at her side, planning the my leg. I got a new fake leg and then I got married and conference and the platform for her. Later on, we did a had four kids. It really wasn’t until 10 years after my lot of work with her and brought her into Bosnia. She accident that the landmine issue became a global issue. I kept asking for help, “What should we do next?” Funda- jumped at the opportunity to get involved. When I met mentally, I think Diana was a person of compassion, so co-founder, Ken Rutherford, he said, “Jerry, you’re she wanted to help people. She single-handedly translat- tracking the wrong weapon of mass destruction. Land- ed the issue in people’s minds from a security issue to a mines have killed more people than nuclear, chemical, humanitarian issue. This was about people getting blown and biological weapons combined. With your profes- up. It wasn’t just about the weapons. sional experience with arms control and national securi- ty issues, and with your personal experience losing a leg Cooper: Did Princess Diana come to you? to a landmine in Israel, why don’t you get involved? There’s this new campaign that’s just starting.” This was White: We were told by the Mines Advisory Group in the mid-’90s. In fact, the UN was having its first con- (MAG) that Diana wanted to meet us and wanted to ference on landmines in Vienna in September of 1995. have survivors involved. We were the international sur- So I was just at a propitious moment to join this nascent vivor group, so MAG said, “Why don’t you get in touch campaign. with Kensington Palace?” The de-miners brokered the introduction, and I started to brief Diana on our work And that’s when the light bulb went on and we started with survivors around the world. She asked me to plan, Landmine Survivors Network. Born during the Interna- in secret, her first trip to Bosnia. That was in 1997. tional Campaign to Ban Landmines, which won the Nobel Prize in 1997, it’s the first international organiza- Cooper: Did you go to England to meet, or was this tion created by and for landmine survivors. We were the mostly over the phone? only survivor group, and we also started to work with Princess Diana. All of this gave us a lot of attention, of White: Mostly by phone. We went over to Kensington course. Palace on a couple of occasions to brief her and also met with her in the US during an event. In Bosnia we Cooper: How did that connection occur? spent three days together, non-stop.

White: Princess Diana had gone to Angola and had been Cooper: How did you pull that off? awakened to the problem of landmines on her trip there. When she said how awful landmines were, sort of off White: We didn’t tell anyone about it. the cuff, really, she was accused by the British govern- ment of not being a proper princess. They thought she Cooper: You have visas and diplomatic issues to get into should stick to humanitarian issues and not talk about another country? security issues that she doesn’t know anything about. So she began looking for a humanitarian platform to address White: I knew on her end that the Foreign Ministry of

36 ABILITY Her Majesty Queen Noor in Cambodia

Defense would have to handle her permission to go, and a privilege to watch and learn from the master, someone that her travel on a private plane was to be arranged. I who just fundamentally understood people in pain and was just supposed to go pick her up and travel with her how to be with them. back to Sarajevo. Meanwhile, we had her bodyguards. But even the British ambassador to Sarajevo was not Cooper: Did these people know who she was? informed. This was at a time in Diana’s life in which she was over the pain of her divorce, and she was starting to White: In Bosnia, most did. There were a couple who call her own shots out of Kensington Palace, not having were like, “Who’s that?” during the events. But at the to always do what the establishment wanted or the gov- time of the visit, most people in Bosnia were aware of ernment wanted or the family wanted. So she was sort her. Sometimes it was just, “She’s a princess from the of cutting out on her own. UK,” or some other country. I guess they hadn’t read a lot of People magazine. I wouldn’t tell anyone who was coming. People would guess. They thought it was Bianca Jagger or Hillary Cooper: In the cases of those people who didn’t know Clinton or some other celeb. I said, “I can’t tell you, but who she was, did you still see the reaction to her com- I’m trying to arrange a VIP visit, and I was wondering if passion as being as powerful? I could have your help on the following days.” So we engaged the help of friends who could supply us, but I White: Yes. As Diana put it, and I write about it a little told them I couldn’t say who was arriving, only that it bit in the book, “What’s most important sometimes is to would be important and that they would be glad they care enough to show up.” In her case, that meant com- were involved. It’s amazing how far we got by doing ing down from on high. It’s a transformative gift to care that. The whole thing was also done pretty tightly and enough to show up and sit with people in their pain and quickly, so in that July and the run-up to August, there listen to them. And then if you touch them and show wasn’t much time for leaks. that you care, that is powerful. In our case, we were there to help and to follow up. Diana had a charismatic Cooper: What was the experience of going there? gift. Until I met her and experienced her in person, I would not have thought that. I know she was good for White: I was watching a person with a gift in action, the cause. which was very fun. I realized it wasn’t just about Diana the celebrity, it was about a person who fundamentally At first I thought she’d be good for the cause simply cared about people who were hurting, someone who had because she was so famous and because she’d be a gift of compassion and healing. Seeing her in action in putting the spotlight on the issue of landmines and the any particular room, or in a home where there would be need to ban them. I thought, “Brilliant, wonderful, play people with stumps and raw wounds or losses, Diana that role.” It would be a media role. But then it became was always very appropriate and loving. This was a clear to me, going in, that this was more than that. It woman who had just lost her husband only a month became a humanitarian, compassion-based role, and that before. She’d listen as people poured out their hearts to went much deeper than simply being a spokesperson. her. And she took some of their pain out of that room each time, again and again and again. So for me, it was Cooper: So you saw firsthand, even if she was not titled,

ABILITY 37 Her Majesty Queen Noor in Bosnia

that she still would have provided support to these peo- White: We were just starting in the movement, and we ple who didn’t know who she was? were losing a spokesperson, a patron, and someone who’d become a friend. At her funeral, needless to say, I White: That’s the gift that we get in princes and pau- couldn’t stop crying over the loss of someone very spe- pers all around the world who are a little bit hurt. Diana cial to the world, but also someone who had touched my had been hurt in life. To reach out and to listen to peo- life personally. ple who were also hurt in life was her way of giving back. That’s what peer support is about. It really works Cooper: Tell me about the Survivor Corps. when someone who has been scarred reaches out to someone who has more recently been scarred. We do White: The way to work out part of our grief over this all around the world. Sometimes that’s all you real- Diana’s passing was to build a legacy of survivorship. ly need. It just so happened that she was a beautiful For 10 years we built landmine survivor networks, pri- blonde princess from another country, but she had the marily using this peer-support model so that mine vic- gift. Because she herself identified as a survivor, that tims could get legs, jobs, and get on with their lives. was the key. We started in Bosnia, where we had taken Diana, and Cooper: What are you referring to when you character- we then expanded to work with Her Majesty Queen ize her as a survivor? Noor of Jordan. We set up a country network there, and then in Ethiopia, Mozambique, El Salvador and Viet- White: Whether it be from a failed marriage or from her nam. We grew, doing more than 100,000 peer visits to troubled childhood, from feeling lonely or from reach- homes and hospitals. We worked with each individual ing out to people…All of those issues that became so we met through our network to develop what we call public during her broken marriage were instrumental to individual recovery action plans (IRAPs). Primarily, help her emerge as a highly sensitive, empathetic per- these are the keys to recovery and self-motivation. The son. She showed a “get it” factor, without all of the psy- survivors or amputees we met would set out their own chobabble of trauma and recovery. She understood that personal objectives with a peer, their mentor, and would a crisis, a trauma, is a before-and-after experience, and then set objectives for their health. These objectives that it can come in unexpected ways. Life is a minefield, might be to get a better prosthetic limb or to participate and she just viscerally understood that. Diana showed in disability sports. The survivors would set up objec- resilience. She also joked about things. Humor is one of tives for their economic livelihood, knowing that a fake the leading signs of resilience, one of the leading hall- leg doesn’t put food on the table. marks of someone who will overcome. She had a wicked sense of humor to keep her head above water, Cooper: And they’re also just not tasty. including an ability to poke fun at herself and at this idea of trauma. White: Yeah. They do break your teeth. (laughs) We also focused on social empowerment. In other Cooper: It must have been frustrating to see everything words, how do you get back into the game? How do you surrounding her death and the media hounding. give back? There was this obligation of community ser-

38 ABILITY Jerry in Vietnam Princess Diana and Jerry White in Herzegovina vice, which was also an ethic of the organization, that if capacity-building to others besides themselves. Every- you’re going to receive, you must also give. You must where you go, you run into great groups and not-so- pay it forward in your community. So that made us a lit- great groups. I think because disability groups have tra- tle bit different. We weren’t just about charitable things, ditionally been so underfunded and marginalized, both like, “Hi, you need a fake leg? Here’s the gum ball.” culturally and financially, there isn’t always a strong Our more specific issue was, “How do you prioritize tendency towards organizational health. your recovery?” Cooper: I think that, due to the paternal nature of peo- Instead of having an individual pay us back, we’d ask ple, sometimes the organizations that are quote “trying them to pay it forward. Let’s say we helped someone get to benefit their clients” limit the potential with restric- greenhouse coverage and a startup kit for a business in tions of what can and can’t be done, and their clients Bosnia. We’d then ask that every month they take a miss out on the benefits of helping others. We see it in batch of fresh tomatoes and greens to the local orphan- the States all the time as we try to educate non-profit age. So we found survivors finding great joy and moti- organizations on internal attitudinal changes. vation in the give-back, being both a beneficiary and a benefactor. That’s the give-back piece that I think is the White: Exactly. When we went around the world and we “special sauce” of recovery, but which is also crucial to thought we were helping mine victims, we realized that our recovery programs around the world. It’s not solely in any war-affected country where we showed up, we about you and your survival. It’s about your survivor- really had to work with the community at large, includ- ship and your citizenship and your contribution to the ing the disability groups. You can’t sustain playing community. favorites with one type of disability when the whole community is so desperately in need. That was one Cooper: I love the way that’s been established. Those thing we observed that led to our next campaign for a give-back components are so needed, as you well know. barrier-free world, not just for a mine-free world.

White: One of my frustrations with many disability It also seemed that the vocabulary of disability was groups around the world is that sometimes they risk largely the fruit of centuries of this patronizing, charita- falling into a sense of entitlement. Additionally, you ble, medical model or “sick model” approach. So we might find a sort of disability quote-unquote “mafia,” knew that the vocabulary had to change, that the law which seems to control many of the disability groups and policy structure had to change. around the world. Again, impressive, scrappy survivor types, but are they giving back? That’s the question. At the very least, even though we knew it wouldn’t spell the end of the problem, we had to have the dis- The posture of being victimized, of being entitled, is ability rights crowd take their seats at the human rights sort of insatiable. I understand it, because many groups, table. That meant two things had to happen that were a when there are very few resources, struggle for their bit shocking to me. The disability rights crowd needed very survival, and perhaps are not best at providing a human rights vocabulary or framework. At best, they empowering services and generational training and had perhaps a social framework, a social model,

ABILITY 39 which is part-way there, but a rights-based vocabulary years. We are our age.” I joke. I don’t want to sound was missing. condescending, but we sort of graduated from Landmine High School, where we were trained, and enrolled in And on the other side, you had a rather developed, Survivor University. Right now as an organization, global human rights industry which had no disability we’re a freshman. We finished our freshman year of tak- sensitization or vocabulary. So, as we moved towards ing a whole range of new classes in survivorship, from creating the international disability caucus that ulti- gender-based violence to genocide, not just the land- mately would drive this convention in an inclusive, par- mine piece that we started with. It’s been quite a chal- ticipatory way, both crowds needed some sort of intro- lenging and exciting year, as we are now where I think duction to the other and to each others’ vocabulary. we should be, majoring in issues of survivorship in con- They also needed to know how to function as a cam- flict-affected countries around the world. We’re bring- paign and as a movement while we brought our knowl- ing the leadership of survivors, those who are most edge from the landmine ban movement into this dis- scarred by conflict, into issues of conflict resolution and ability movement. community rebuilding.

So it was about reaching across sectors to get involved. I’m 46, so I’m getting old and gray and losing my hair It was about including the people with all their limbs in the process. But it’s fun to say I’m a sophomore at who are not in wheelchairs. It was about fighting for Survivor University this year. the rights of 650 million people, but without losing sight that this is about any and all of us who are “tem- Cooper: You’re still a student. porarily able-bodied,” as they say. We all come in and out of abilities, depending on context, environment White: There’s a framing and rethinking of things a and health. about person’s abilities. In northern Uganda, for exam- ple, where we’re working on a newer campaign, and in This evolved from a mine-free campaign into something Rwanda as well, you see millions of people displaced, bigger. We must promote a barrier-free campaign, which and so many people with severe disabilities due to vio- is colloquial for the disability rights convention work lence. They might tell us, “We’d like to make health we helped to lead. When we asked ourselves, as sur- centers accessible to persons with disabilities.” Because vivors, what this was really about, it wasn’t about fake people can’t even access health care, let alone microen- legs or wheelchair ramps. It was about how not to live terprise. They still have all these barriers to participa- as a victim. So this last piece in our conversion, in our tion: everyone thinks it’s too expensive, someone will transformation into Survivor Corps, was done in concert get hurt or it’s better to keep them in institutions. So with this book to express a philosophy of how to live you find methods that integrate the community and are victim-free and therefore help break cycles of victimiza- good for everyone. Just as you’re expressing with tion and violence in the world. ABILITY Awareness or the ABILITY Corps idea.

That’s where we are today. Ultimately our raison d’être, Last year we started to look at how we were doing on the real heartbeat of this network, was this aspiration some of the accessibility stuff for some health centers for a global survivor movement that would break down and government buildings, and we’d sometimes discov- barriers and empower individuals to not only enjoy er a funny blooper, like, “Oh, isn’t that something? You their rights, but to enjoy their responsibilities living can use this ramp to get in but not to get out.” And then their lives. you’d go inside and the next door would not quite be wide enough for someone in a wheelchair. So little by So there we have it. Survivor Corps is born. We’re one little, you’re retrofitting at some level and you’re trying year old. to get them to do universal design. You realize it’s both an education and also an attempt to anticipate but not Cooper: And you only look eight months—you look very intimidate. good for your age. Our strength is probably on the front-loading capacity White: (laughs) During the exciting days of the Nobel and the training, the technical assistance, particularly Peace Prize and Princess Diana and Queen Noor, some- on the peer-support side. As I described earlier, Sur- one said to me, “Jerry, I know this is all heady stuff, and vivor Corps’ two softwares were among the best. One congratulations. However, you can only be your age. is peer support methodology and training, and the sec- And for an organization to grow, to get on with this ond is advocacy leadership, whether it be the Landmine work, it must move from phase A to B to C to D, like Campaign or the accessibility caucus. We’re really try- our children. It’s organic, and if you try to take a short- ing to get hundreds of these vet-related groups together cut, if you try to be D when you’re really B, you end up to get a total national roadmap of how we deal with having to go back to B to grow and mature.” It was such community reintegration for our vets, whether they a simple thing that someone said, and it stuck in my have disabilities or not. head. I responded, “No, we evolved over the last 12

40 ABILITY Jerry in Ethiopia

Coalition work is like God’s work, or volunteer work, pushing until it’s almost legally obligated or contracted. because it’s not controlled. I’m not staffing it. It’s more So I’m trying to think about how to keep checkmating like coalition mobilization, where we show the leader- the ideas, so that service will integrate vets coming back ship, the brain power and the ability to facilitate and as a rule, not as an exception. This allows people with coordinate well in serving up substance, and we don’t disabilities not just to live off of their disability compen- have to pay for the change. We can actually do some- sation or military compensation, but really to start to thing that will probably have billions of dollars of effect live again. I just got back from two and a half weeks over the coming years. abroad in the Middle East, so I’m a little behind. But I think we’re making in-roads and progress, because Cooper: Do you know Dr. Liberman’s work on psy- every time we meet with anyone here, from DOD to VA chosocial rehabilitation? to the Corporation to NGOs to the 250 members of this emerging new coalition, we don’t let up. White: It sounds familiar. Cooper: Did you go to Gaza with Sheikha Hissa? Cooper: He’s at UCLA. Our ABILITY Build is a model program that shows the benefits of giving back to the White: No, we have an Israeli coordinator and we’re community and the mental well-being of the individual hiring a Palestinian coordinator. We’ve had an office in who is doing the volunteering. Jordan for about 10 years, trying to find these communi- ty-based projects where adversaries and enemies can White: We’ve met with the Corporation [Corporation work together. We’re finding that making a health center for National Community Service] and with some of accessible is the type of project where people can say, their leadership. Every day there’s something going on “We have a mutual interest. It’s a good thing. It’s rela- to try to get more accomplished. Who’s going to say to tively non-political.” Once you get people working your face, “We object to having people with disabili- together on something, it ends up being about reconcil- ties integrated into volunteerism. We object to disabili- ing and building social capital for these former enemies. ty being on the next conference plenary”? No one says that. But you have to keep at it, and in it. So we started Jordan was made easier because we got Queen Noor, with the definition of “give-back.” This leads back to and Diana became an international patron. But it still the three guys who work with me. What would com- meant there was registration and the work and the hir- munity service look like for vets here and abroad, and ing. It was sort of facilitated somewhat, but not too what would Vet Corps look like as they integrate the much. Mostly, it’s just old-fashioned work, and it takes concepts? It’s essential, the service piece. It’s proven you 10 trips over there and not just one. I feel like there by the research, as well as by our experience to help in are 10 years of my life I don’t even remember, when my recovery. kids were young and I was birthing this work and set- ting up these networks. I just don’t even know how I It’s harder to do things, sometimes, when no one clearly was able to breathe. objects to it. Sometimes it’s easier to fight a battle when you have an enemy. When you have people who are Cooper: You’ve got a new book? well-meaning and accepting, you just have to keep

ABILITY 41 White: The paperback just came out in May, entitled Cooper: How do you feel about your work with the UN Getting Up When Life Knocks You Down. It originally and the human rights convention? came out in hardback as I Will Not Be Broken, so it’s basically the same book, but launched fresh as a paper- White: I’m glad that there is a high, comprehensive back squarely in the self-helpful genre. So now when international standard now set for disability rights as an someone reaches for it, they know exactly what they’re aspect of human rights. I’m proud of that. That’s a lega- getting, as opposed to the other title. The book is really cy, and it will take a hundred years to play out. But I’m about how to overcome crises by sharing the wisdom of disappointed that the disability community, in its con- survivors all around the world. traction and its self-obsession, forgets that this is really about six billion people. Every time they say “There’s Cooper: Your organization has really grown. nothing about us without us,” I add, “There’s no success without the rest.” I understand the playing field is not White: And then you wonder why you have such gray level yet, but let’s pretend it is, because we’ll make hair and so little of it left. So there is the passion piece, more progress wheeling down the road. “Wake up, guys, but it’s also about picking your battles. Sometimes it’s it’s about all of us. This is the best human rights conven- just a question of research mobilization. I find that, in tion for all survivors, for all people breathing, for all the disability community, people act like we are a rich grandparents who are aging, for all of us who have NGO. Resource mobilization is not something that hap- mixed ability.” pens overnight. It’s not something you get lucky at. It’s also seeding the garden with five million relationship Cooper: Are you doing anything in the microfinance meetings that should bloom something like a rosebush arena? somewhere eventually. White: We do what we call linking and referring But it’s also huge, hard work. It’s not like I go to a cock- abroad. That means setting up these empowerment tail party, meet a rich person and they write a check. peer-support networks and working with survivor The more people succeed, the more everyone succeeds. groups. Obviously, one of the big issues in developing Don’t be tentative on resources, be additive. countries is not just health, but also the livelihood. We say, “Okay, what’s your objective there? How do you Part of the challenge is that you have to be able to sus- get to the microfinance? How do you qualify for a tain that resource mobilization, which means that loan?” It might be that we’ve done some granting to you’ve got to put in a hell of a lot of unfunded time, get them to a certain level, working with vocational and the outcome is no accident. I think campaigning training institutes in Jordan, for example, to make has to be fun, too, not just one big slog. So someone’s these resources accessible. So we dabble in the eco- paying for the ice cream or the sandwiches. Sometimes nomic space and then we end up doing what we call we never get a thank you. There’s no silver spoon born economic social work. But at the end of the day, we into any of these groups. Believe it or not, we were aren’t specialists in microfinance. never popular, and there was only George Soros who was sort of interested. Eventually, we got better inter- Cooper: Do you look in the mirror and ask, “How did I national support. But when it gets heady with the get here?” Nobel Prize and Princess Diana, people say, “You must be swimming in the dough.” And respond, White: I actually do enjoy holding up mirrors to myself “Show me.” Disability and doorknobs—it’s not exactly and to others. It’s sort of funny, and I’m trying to learn. a sexy thing. I can tell my children, “This is this, this is that.” It does- n’t matter. They have to come to it themselves. And Cooper: Oh, come on! yeah, you could say to me, “On the contrary, you became all obsessed with landmines around the world. White: Sometimes it is. (laughs) No wonder you forgot 10 years of your life, because you were fighting this demon that bit you and you’re Cooper: You claim you’ve never been lucky. But when mad at it.” But it’s about channeling passion and anger you took that hike— in a way that allows outsiders to hold up a mirror. Maybe this was a delayed passionate response that was White: (laughs) I actually do think that was lucky. part compulsion, part healthy in getting it out of my sys- Whenever I talk to my kids’ high school classes, it’s tem, and part, who knows? interesting how young people want to draw a very direct line. “You made lemonade out of lemons, therefore the I know you can’t really over-psychoanalyze where peo- lemons were good. It’s good that you were injured by a ple are. You just try to have a “net positive.” This is landmine, because look what it led to.” I say, “Not so what Princess Diana showed and taught me. Here was a fast. I will never give good press to the landmines or to woman who was rather complex. I’m not making a saint wars that leave military litter that maims innocent civil- out of her. She was insecure and complicated, she did ians for decades to come.” this and that and she did sleep with married men. But

42 ABILITY was she coming into understanding her gift and purpose on the planet? Yes. Was she practicing her gift in ways that resulted in a “net positive” in the world? Yes. Is it okay that we’re all complicated and we seek to be better this year than last, and we seek to “net positive” for the good of humanity or for the good of life while we’re here? Yes. I think that’s a pretty tall order, to “net positive” and to be mindful of ourselves and who we are.

I’m not asking, “Does Diana know all of her issues?” How much coun- seling does it take? Did I know the motivation of why I did this and that in life? You actually can’t. Diana taught me that it’s okay to be a mixed bag, but feed your angels, not your demons. And that’s what she was doing. It was working.

And the fact is, when I started to get to know King Hussein and Queen Noor, the King had this way of going back to people who may have tried to kill him the month before. It was like an invitation. My view of positive advocacy involves not shaming people or blaming them, but inviting them to do better. King Hussein could appeal to that maybe 10% of humanity in a person, even with maybe 90% of that person being an enemy. When you approach people for change and invite them to get involved, when you appeal to that higher piece, whatever angel is left in them—with some people it’s more than others—that’s powerful.

Invite others to do the same. Invite them to feed their angels. King Hussein was in a tough neighborhood, and his wife, Queen Noor, knew exactly who had been his enemy or who had tried to kill him or take him out over the years. She said it was harder for her to forgive and forget than it was for him, because he’d practiced that partially as a survival mechanism, but also in part because there’s no alternative. Many despot dictators and unsavory people are still sweet babysitters. It’s all weird and mysterious.

Some people like to try to make sense out of it. Allow for the humanity. Allow for the mixed bag. And then you’re really focused on moving the group to “net positive.” I know that what’s good and right would be removing barriers to full participation in society by people with disabili- ties. That’s good and right. It’s going to be hard work, so why not work on it and it will come true? In pieces. Can I “net positive” on this? People can hate me, or can find that my personality is grating. They can look at Jerry and say, “There’s an arrogant bastard.” My response: “I’m sorry you feel that way, but I’m just trying to ‘net positive’ here.” survivorcorps.org

ABILITY 43 44 ABILITY f you haven’t seen AMC’s Breaking Bad, you should. There is a reason it has garnered 5 Emmy nominations this year alone. IThe show follows Walter White (Bryan Cranston), a chemistry teacher who lives in New Mexico with his wife (Anna Gunn) and teenage son (RJ Mitte) who has cerebral palsy. White is diagnosed with Stage III cancer and is told he has two years left to live. With a new sense of fearlessness based on his medical prognosis and the need to secure his family’s financial security, White chooses to experiment in drugs and crime. The series explores how a fatal diagnosis releases a typical man from the daily constraints of nor- mal society and follows his transformation from mild family man to a kingpin of the drug trade.

The experiment gets out of control in the second season, which series critics are calling “bleak, heartbreaking, shocking and bit- terly funny.” As danger and suspicion around him escalate, Walt continues to straddle two conflicting worlds: A ruthless swirl of drugs, murder and mayhem on one hand, and a complex and

ABILITY 45 RJ Mitte and Liz Angeles

emotionally fraught domestic life on the other. In the case of cerebral palsy (CP). With CP, the responses to no-holds-barred world of Walt White, the end justifies the brain are a little bit slower because at birth, the brain the extreme. is damaged due to a lack of oxygen. Every type of brain damage is different. Mine affects my motor skills and ABILITY Magazine’s Liz Angeles and Chet Cooper the controlling of my muscles. Like, my arm jumps. caught up to the youngest actor, RJ Mitte, of the hit While we were looking for the perfect part where I show, along with his manager, Addison Witt, at an act- could use my disability to enlighten others, we were ing studio in Sherman Oaks, CA. also looking for a good job. And when Breaking Bad came up, when I read the script, which was so well-writ- Angeles: So, RJ, how do you like working on the hit ten, I immediately thought, “I have to go for this.” show, Breaking Bad? Witt: Vince Gilligan, the creator, was very close to an Mitte: I love it. I get to work with some of the best actor in college with much more advanced CP, who actors in the business, Bryan Cranston and Aaron Paul, eventually died, but was so inspirational to him, he who are both up for Emmy nominations. Our show is up wanted to add that element into the film. for five Emmys and is one of the best I’ve worked on. We are a really tight cast, like family. We do a lot Mitte: I’m grateful to Vince’s friend, otherwise the char- together. We film in Albuquerque, New Mexico, so acter of Walt, Jr. would not exist. Vince told me, “When when we’re off work, we have these little gatherings. I first wrote Walt, Jr., I intended to have a person with the disability play this character. Not to cut anybody Angeles: The whole show is shot in Albuquerque? out, I sent it to everyone, but in my mind, I had already cast the part of Walt, Jr.” Mitte: Yes. To get the full effect of everything, we like to film on location, more like a movie. We’re actually Angeles: He knew you specifically? shooting twice as many days on location as we are on- set because we film in the caverns and the desert. It Mitte: No, not at the time. He just had a vision of the brings more reality to the crystal meth-making. actor for the character of Walt, Jr. I went on five audi- tions for this role, four here and one in Albuquerque. Angeles: (laughs) How did you land that part? That was tiring. So Vince finally made up his mind and we are great friends now. He said to me, “I would not Mitte: An audition. My manager Addison and I were change the person I cast for this role for anything.” looking for the right script for me. I have a very low

46 ABILITY Cooper: If they find a magic bullet that causes the and he said, “This kid doesn’t really have the kind of CP symptoms of CP go away, will he fire you at that point? I’m looking for.”

Mitte: (laughs) Yeah, Vince would probably say, Cooper: But a good hammer in the leg— “Well, since you don’t have it, we’re going to have to kill you off.” Mitte: (laughs) I charmed my way through it.

Cooper: Have you seen pictures of his college friend? Angeles: Aside from having CP, what is the back story on your character? Mitte: No. We just talked about him and how much he meant to Vince. Mitte: We have not revealed much about the character yet. We’re still setting up the show. We are going into Cooper: Did he use a power chair? our third season now. The most back story we have is a typical 16-year-old kid trying to get his life together, Mitte: No. Like my character, he was on crutches and who happens to have CP. We’re trying to portray the had braces, too. reality of having the disability and the difficulties of learning to live with it, along with the other challenges Cooper: So you never had to use braces? like lung cancer and the destructiveness of crystal meth.

Mitte: I did have braces. But I wanted to get out of those Angeles: Is your character addicted to crystal meth? so badly, because after a while they’re a pain in the— Mitte: He is not yet. Angeles: You get sores? Angeles: But he’s going to be? Mitte: I used to get really bad blisters. I would have to do the casting process for a year and I’d get into my Mitte: Maybe. braces, but after a while, I couldn’t do it anymore. I wanted to get out of them and do other things. I’ve Cooper: Do you home school now? always wanted to play sports. What most helped me to get out of my braces was playing soccer. I always want- Mitte: I work with teachers on set and through a school ed to play football, which was my favorite sport, but in Louisiana. They give me my workbooks and I fill because of my disability, my hand-eye coordination was them out, send them in, and they send me a test with off. I couldn’t do that. So I gradually started playing everything that was in the book that I should know. I am more and more soccer. actually two years ahead. I should have been a junior this year but I am a senior. I have five credits left before Cooper: It seems almost like a Forrest Gump thing. I’m on to college.

Mitte: (laughs) Yeah, it really was. They used to tell me, Cooper: What acting have you done prior to this? “Run, Forrest, run!” Mitte: I had done a little background work. I’m not a Angeles: (laughs) Is that what the braces looked like? seasoned actor. I’ve only been doing this for almost four The ones Forrest Gump had? years now.

Mitte: Kind of. Now they take this plastic silicone Cooper: What made you think, “I want to go into acting”? model of your leg, and a strap goes across the front of your shin and a couple more straps hold your leg. It Mitte: Money! (laughs) No— makes it completely flat, because with CP, it bends. You want to tip-toe. And I just couldn’t take having that and Cooper: Women? doing that every day. Mitte: (laughs) Oh, sure! No, actually it started with my Angeles: Do you use crutches in the show? little sister. An agent saw her and said, “We want you to do this. Just try it out and see how it works.” So we Mitte: I do in the show, but I don’t need them to walk. came out here, to Los Angeles.

Witt: Vince Gilligan initially did decline working with Cooper: From where? RJ because— Mitte: I’m from Lafayette, Louisiana. We came out to Mitte: I was not severe enough. get her an agent, and when I was in the agent’s office, she said, “What about you? You should try it.” She Witt: RJ auditioned on camera which we sent to Vince, threw me a script and said, “Go for it. Read the script,

ABILITY 47 Cooper: Is she working now?

Mitte: Yes. She actually booked a movie.

Witt: It’s called Wildflower. She’s also done a commer- cial. She’s five now.

Cooper: Does she still get work at that age? She’s kind

Photos: Nancy Villere - CrushPhotoStudios.com Photos: Nancy Villere of over the hill now.

Mitte: (laughs) She doesn’t really work too much. Right now we’re busy with my stuff.

Cooper: It’s all about you now?

Mitte: Yes, with the traveling to Albuquerque, I need a parent around while I’m still a minor.

Angeles: How old are you?

Mitte: I’m 16. 17 on August 21st.

Cooper: Do you have a driver’s license?

Mitte: I do. I cut off most of my hair about a month ago. I looked like a lion because my hair grows really fast. So when I got my driver’s license I had this really bushy memorize it, and come back into my office.” I was hair, and now it’s like this. like, “What?” She repeated it. “Read that, memorize it, and act it out. Let’s go.” So I did it and she said, “I like Angeles: Is it from California? you, you’re cute, you’re fun and I’m going to get you an agent. First, you have to go get some training.” Mitte: No, Louisiana.

Cooper: You knew the agent, then? Angeles: When you drive, do you require any special equipment in the car? Witt: I did. I had sent his sister to this agent. Mitte: I don’t. I have enough control over my body to Cooper: So you knew his sister first? drive perfectly fine.

Witt: Yes. His mother had called me and said that while Cooper: Except that you’re 16. they were at a theme park in Texas, someone stopped them and said, “You should get your daughter into the Mitte: I’m actually a good driver—in these. [puts on his entertainment industry. Go to California and meet a man glasses] How do I look? named Addison.” Cooper: Smarter. Cooper: He’s the man. Mitte: Oh, that’s not good. I don’t need to be looking Witt: When she called, I said, “I don’t work with chil- smarter. I’m already smart. (laughs) dren that young,” because she was two years old. But the more we talked, I learned that she had gone to college— Witt: When his mother talks about his CP and the work they did, it’s phenomenal. It took a while before he was Cooper: At two years old she went to college? even diagnosed. They thought it was all sorts of other things. I think he was about three when Shriner’s Hospi- Witt: (laughs) Their mother had gone to college in tal diagnosed him with CP and gave him a list of activi- Tyler, Texas. And I’m also from Tyler, Texas. So I said, ties that his mother had to participate in, simple things “Well, that’s a little bit of a coinkydink. Why don’t you like folding washcloths. He would fold a whole stack of come out and we’ll talk about it?” Once we established them and his mother would knock them over and force a relationship, then RJ came out with them and I sent him to start over. them to the agent. Mitte: It was so nice. A lot of people with disabilities

48 ABILITY don’t have parents who push them. I really feel bad about that. I think it’s a parent’s job to push their kids to achieve their goals. They told me I was going to need a wheelchair because I couldn’t bend my legs. My mom stretched my legs and really pushed me to get to where I am today. Really, I owe my mom.

Angeles: When I Googled you, I found, “Babe magnet, RJ Mitte.” How’s your love life?

Mitte: Oh! (laughter) My love life?

Angeles: I’m sure the girls are dying to know.

Mitte: It’s all good but I’m always looking so if anyone’s interested, give me a call. Toll-free number! No, it’s good. It’s crazy with teenagers.

Angeles: And what are teenagers doing these days besides playing video games?

Mitte: All teens are different and like to do different things. I hang out with my friends. Actually, I watch a lot of movies. I am a workaholic. I love my job. I love my car.

Angeles: So where do you like to drive when you are in LA? Mitte: I like to go Huntington Beach, Long Beach, the mountains, Hollywood Hills. There are some great views up there. I take my dogs to this dog park right under the Hollywood sign.

Angeles: What kind of dogs do you have?

Mitte: I have two, a Scottie and a Havanese.

Cooper: What’s a Havanese?

Mitte: It’s a little white dog that looks like you can turn it into a football.

Witt: They look just like a Maltese. His sister got it for her fourth birthday.

Angeles: Talk about babe magnets!

Mitte: Yes, I lure them. My Scottie is definitely my chick magnet. Everyone says, “She’s so cute!”

Angeles: What else do you enjoy?

Mitte: From the time I was seven, I’ve always liked to work. Even before I was an actor, I did a lot of work with my grandpa’s Mitte Foundation.

Cooper: Give us the history of the Mitte Foundation.

Mitte: He started the foundation when he was young. It’s like a fairy tale story. My grandpa grew up poor in a small town where they had dirt floors. He worked his way through college on a basketball scholarship. He wanted his whole family to be happy and his kids to have what he did not. He owned a majority of the big insurance companies in the U.S. and created this founda- tion to give back, to do library charity events and fund college scholarships.

Cooper: So you were volunteering for the foundation?

Mitte: Yes.

ABILITY 49 L to R: Addison Witt, RJ Mitte, Liz Angeles and Chet Cooper

Cooper: In what capacity? wanting to help, and that help sometimes hinders the independence of the individual. Without letting them try Mitte: Building houses. The foundation donates libraries and even fail, they’ll never know if they can do it. So I’d and also builds houses for Habitat for Humanity. Last love to do some work together in the future. year we took a group of kids overseas and built houses for the homeless there. I was in Austin a month ago Mitte: That’d be great. doing a groundbreaking for a new library in Bircham, a small town outside of Austin, Texas, where my grandma Witt: RJ just recently became one of the spokespersons grew up. When Katrina hit, I went to Louisiana. It was for I AM PWD, (Inclusion in the Arts Media of People very hot. I did a lot of work there and helped rebuild With Disabilities). It’s through the Screen Actors Guild. church roofs. Cooper: Along with Robert David Hall? Cooper: So you see the value in volunteering? Mitte: Yes. They just asked me if I would like to volunteer Mitte: Yes, it’s a great experience to help other people. my time and work with them, and I said, “Of course.”

Cooper: So what would say to other teenagers? Cooper: That’s an interesting initiative to increase awareness. Robert David Hall has been an advocate for Mitte: “Get to work! Don’t be lazy!” so many years. Here’s a guy who’s actually made it, and he still continues his advocacy work. He’s a good guy. Cooper: Maybe we can work together on the ABILITY Build program? We partner with non-profits that build Angeles: Do you surf? homes, like Habitat for Humanity, and help them out- reach to people with disabilities to volunteer in building Mitte: I’ve been wanting to learn. I like to snorkel. I do homes. a lot of fishing. I try to do a lot of sports, but my job takes a lot of time. Witt: Wow! We’d love to participate with you on that. Angeles: I was just surfing this morning. I know the best Mitte: Yeah, that’d be great. People with disabilities place for beginners. don’t realize what they can do unless they try it. Witt: Do tell. I’ve been wanting to start. Cooper: And people need to give them the chance to try it. Angeles: On PCH near the Malibu Pier.

Mitte: That’s a problem. Some people think because Mitte: I’ve been trying to find a good beginner’s spot. I they have a disability, you have to do it for them. A dis- know better than to mess up a career surfer’s wave. ability is just a part of your personality. You may not be able to do some things, but some people can’t do some Cooper: San Onofre has a spot called Old Man’s. It’s a things that you can do. perfect place to learn, because you don’t want a fast wave. You want to start on a long board on a slow- Cooper: There’s the maternal or paternal nature of moving wave.

50 ABILITY Mitte: I think once I get the chance to start practicing, producing or directing. You can take ideas from people, I’ll be really good at it. but you want to make it your own and do your own thing. Bruce Willis and Samuel Jackson are two very dif- Witt: Yeah. You’ve got really big feet. ferent actors, but you want to watch both of them to see what they’re going to come up with. I like to keep an Mitte: I’m just trying to find the time. open mind and think,”maybe I can do it this way” or throw a twist on it and become a different character in Cooper: Do you ever do any motorcycle riding? each role I portray.

Mitte: I used to. Cooper: You want to say, “I want to get these goats off the trains?” Cooper: What did you ride? Mitte: Yes. (laughter) Where did that come from? Mitte: 500cc dirt bike. Cooper: Snakes on a Plane. Angeles: How does your mom feel about that? Mitte: Oh, I get it. I was trying to figure out where you Mitte: If I can do it, I can do it. My mom won’t let me get got the goats from. a street bike. This is a dirt bike that only goes 70 mph. Angeles: As far as your long-term career, is it more Angeles: (laughs) So what are your long-range goals about these other things you want to do and acting is and what would you like to see happen in your future? just a stepping stone, or do you have an acting dream?

Mitte: I’d like to start my own agency and I want to pro- Mitte: I love acting. I love my job. It’s one of the best duce and direct, but I still want to act. Acting is a busi- and most rewarding jobs I could do for my age. I would ness, and sometimes you can act forever, but sometimes love to have my own company, but I’d still want to keep you need a plan B. I’d also like to open a restaurant in acting. If you truly love to act, you do it with all your Albuquerque. heart and put everything into it. If you don’t, you slowly stray away and you start doing other things. It has Angeles: What kind of food? become a real passion of mine. Four years ago, I would have said, “Acting? What? No, I’m good.” (laughs) Mitte: Anything, really. I can make some good Creole food. I think it would be cool to have a restaurant in the Angeles: What did you want to do before the idea of front, with a side entrance you would have to know acting was presented to you? about where you knock on the door, and it would open up to a little bar-lounge area. In Albuquerque, those are Mitte: I always wanted to be a Marine. My grandpa was the big things. We like to go to places where the stars go a Marine, so he inspired me. My friends and I discussed and hang out. joining the Special Forces and becoming Rangers. They can’t have my disability in the military, but I think I can Angeles: Of all the celebrities who inspire you, who shoot better than half the people there. I also considered would you most like to meet? getting into the business of fishing. My uncle is a pro- fessional fisherman. He was in all the newspapers in the Mitte: I’ve met the majority of the people I wanted to South because he would win all the tournaments. I real- meet. ly love to fish. That’s what happens when you grow up on a boat in Louisiana. Angeles: Who were you most excited about meeting? Angeles: What kind of fish? Mitte: I’ve met Bruce Willis, Denzel Washington, Tom Hanks and Julia Roberts. Mitte: I love trout. It’s a good fight.

Cooper: So no big names. Cooper: You have a lot of business aspirations. Any thought of school? Mitte: Yeah, just little people. Mitte: I’m going to UCLA. From working with the Angeles: (laughs) Who is your idol when it comes to Foundation, I already have a lot of business aspirations acting? in the works, so I want to get my master’s in business, and I’m going to minor in theatre studies. One problem Mitte: I grew up watching Will Smith, and I met his fam- with college is that I’m in Albuquerque six months out ily but haven’t met him yet. But I don’t really have an of the year. And I have another movie at the end of this idol. You can’t really focus on one design of acting or year to film. It’s called Me. It’s a neo-Nazi movie.

ABILITY 51 L to R: Bryan Cranston, Anna Gunn and RJ Mitte in Breaking Bad Mitte: Yes, my grandma, my mom, and my little sister are all out here. My uncle still lives in New Orleans. My dad lives in Austin.

Cooper: They separated?

Mitte: Yes, my parents divorced when I was two.

Cooper: Did you get to know your father?

Mitte: Oh sure, I see my dad all the time. He visits us in Albuquerque and comes to the set.

Angeles: How do you like the red carpet?

Cooper: What is the movie about? Mitte: I love it.

Mitte: My character actually has a very bad disability, Angeles: Does your family love it too? so I’m in a wheelchair and I can’t move. I can just gur- gle and my brother is a neo-Nazi. I’m in the hospital, Mitte: I really go alone most of the time. Addison goes and—well, I won’t give it away. with me. My mom doesn’t really care much for the whole red carpet scene. She says, “Go have fun.” Cooper: So you’re not a skinhead? Cooper: Is she working? Mitte: Next time you see me, I’m going to have my head shaved and I’ll have a big swastika tattooed on my Mitte: Actually, she had a back injury six years ago forehead and I’ll be yelling in a pitcher, holding my from a car accident and has two herniated disks. She’s arms out. “Yeah, this is RJ Mitte.” (laughs) No, I won’t had three surgeries since the accident. Right now she’s have tattoos or anything like that. in Louisiana and she’s not working because of her back.

Cooper: Give us your family background. Cooper: What kind of work was she doing?

Mitte: My mom is from Lafayette, Louisiana, and my Mitte: She worked for a different foundation, Angels of dad’s from Austin, Texas. I lived in Louisiana for a cou- Mercy. It’s for elderly people who can’t help them- ple of years and then we moved to Austin to take care of selves. They bring food, help them with groceries, help my grandparents. We were there for four years taking them get around their house and spend time with them. care of my grandma, who had cancer. Then I came back to LA to work. My grandma, grandpa, my other grandpa, Witt: She also did interior design and real estate. and my great-grandma all died within a couple of months. Angeles: Your sister’s with her? Angeles: I’m so sorry to hear that. How did your parents meet? Mitte: Yes, my grandma and my little sister are with her in Louisiana right now, because she’s having another Mitte: My mom was working for a hotel in Philadelphia. surgery tomorrow. My dad owned the hotel and he was raising hell about something. Cooper: Are you going to go back and see her?

Cooper: She was the one causing the problem? Mitte: I will stay here because I have a lot of work to do with the Emmys coming up. It’s just a day surgery. My Mitte: (laughs) No, she was trying to solve the prob- mom will be back on the 27th. lem. She managed the hotel. My grandpa owned the whole company, actually, and my dad helped him by Cooper: Do you have any issues with spasticity? working there. Mitte: I do. I take backlofen for it. It’s a muscle relaxer Cooper: The same grandpa that owned the insurance that calms the spasticity down and really helps relax companies and started the Mitte Foundation? my muscles.

Mitte: Yes. Angeles: So if your character has more advanced CP than you, do you have to act like you have more severe Angeles: So your whole family is now in LA? spasticity?

52 ABILITY Mitte: I do. Actually, my spasticity acts up if I sit in cars from the beginning, how do they get the DVDs? and I bend my legs certain ways. The muscles will start twisting and contracting. It depends what kind of CP Mitte: Places like Best Buy or Circuit City, ask for you have. With certain CP, the muscles don’t tighten, AMC’s Breaking Bad. they are too loose, so you can’t really move your body. With my CP, the muscles contract. Angeles: So how will your life change when you turn 18? Will you get an apartment? Angeles: AMC is American Movie Classics. I always thought they only played old movies. Mitte: I will probably get my own space when I turn 18, just to call friends over and be loud. Mitte: They still play old movies. They’re trying to get more modernized now. It’s such a new station to a lot of Angeles: With your birthday right around the corner, people that they can do almost anything they want with what are you going to do to celebrate? the show. For instance, in the pilot, this girl comes out topless with Aaron Paul, who plays Jesse— Mitte: I’m going to work. My 17th isn’t really a big deal for me. The 16th was fun because I could legally drive Angeles: Is he the actor from HBO’s Big Love? and wouldn’t get in trouble.

Mitte: Yes. He comes rolling out of the window while Cooper: What’s new for your character on the show? the DEA is breaking down his house to arrest him, and this girl comes out topless with these big breasts! AMC Witt: For the first two seasons of Breaking Bad, it has really been about setting up the foundation of the show, is really pushing the envelope. They’re not worried developing Bryan Cranston’s character and the other about losing people, because they have their fans who main characters. The creator and writer-directors told love it and will watch almost anything on AMC. me that in the third season we’re going to see a lot more of RJ. They’re just now beginning to cultivate his story Angeles: Like HBO, they can make their own rules and line, and I’m hoping that they’re going to delve more include profanity and nudity? specifically into the CP and how that is a part of their family dynamic. They told me we’re going to be very Mitte: We cannot. We blur out nudity and bleep profani- surprised. There’s going to be a lot more involvement. ty, but on the DVD we let it rip. You’ll probably see him in a relationship, at school, a lot more things going on. Angeles: If someone wants to start watching the show amctv.com/originals/breakingbad ABILITY 53 erebral palsy (CP) shows itself in different ways is it reversible. The way a person is initially affected by and with varying severity, and the manifestations CP generally continues pretty much unchanged through- Cof CP are usually recognized before the age of out the rest of life. By and large, life-span is not signifi- three. CP affects the brain’s control of the muscles; thus, cantly reduced in persons with CP. poor coordination (ataxia) of one or more limbs is the characteristic manifestation. The effects may be hardly While there is no treatment for the damage to the noticeable, severely debilitating or anywhere in brain, the deficits caused by CP can be addressed with between, but most people with CP live productive, certain forms of treatment. The earlier treatment meaningful lives. begins, the better the person functions in the long run. Healthcare professionals use physical therapy and Effects on the limbs include being flaccid (meaning too occupational therapies to assist persons with CP to floppy) or, more commonly, being spastic ( meaning too adapt to their condition. Other treatment includes giv- tight). For instance, the legs might be bent at the hips ing medications to help control the seizures and pain and knees, causing the person to have a crouched gait. that occur in some cases. When people with CP are walking, their legs may also strike one another like blades on scissors. This is called Orthopedic surgeons provide another treatment for the a scissoring gait. Spasticity and ataxia may also affect disorder by severing tendons to improve movement one or both arms. that has been impeded by spasticity. This procedure to cut them is called a tendon release. Tendons are The majority of people with CP are born with it. A few tough, fibrous structures that connect our muscles to others develop it in the first few months or years of our bones so that when the muscles contract, the life. Either way, it is the result of damage to areas of bones move. Braces and other orthotic devices the brain that control muscles. In those who are born improve some anomalies in CP patients without with CP, the damage is believed to occur in the womb surgery. Assistive devices like wheelchairs and or during birth. People who develop it early in life do crutches may also be necessary. so as a result of experiencing infections or trauma involving the brain. Advances in medical technology are sometimes applied to the problems caused by CP. Spasticity is one such Infection of the brain is called cerebritis and is often problem. It is typically treated with medications that caused by a virus. Infection in the spinal fluid is called relax the muscles, but these drugs have distressing side meningitis and can be due to a virus or bacteria. Spinal effects when taken by mouth. In order to better adminis- fluid infections can also cause cerebral palsy. These ail- ter them, Medtronic corporation manufactures a medical ments are more common in early childhood than later in pump approximately the size of a hockey puck, a device life. Since the brain is still developing in early child- which is implanted to continuously deliver an anti- hood, it is more sensitive to the damaging effects of spasm drug directly to the spinal cord. Implantation of these diseases. CP is not a progressive disease, nor the pump requires a minor procedure to place it under

54 ABILITY the skin on the abdomen. Then a small tube is inserted the process that caused CP in a given individual also under the skin from the pump to the middle of the back damages other areas of the brain, intelligence is not where it enters the spine. The end of this tube rests in disturbed. Brain injury, infection, and too little oxygen the spinal fluid surrounding the spinal cord. A muscle at birth (anoxia) sometimes damage other areas of the relaxing drug pumps into the spinal cord fluid where it brain causing cognitive disorders in addition to CP. takes effect. This procedure greatly reduces the amount However, cerebral palsy refers only to the problems of the drug circulating in the blood stream to other parts with movement in the arms, legs, speech or other of the body and so diminishes side effects in the brain. muscles.

A small reservoir in the pump provides storage for the Research on CP began years ago and is ongoing. Fund- drug. When it becomes necessary, refilling the reservoir ing for research comes from numerous sources includ- with the drug requires placing asmall needle through the ing the Federal government and money raised by the skin (percutaneously). The amount per minute of the Jerry Lewis Telethon. Supported by this funding, sci- drug being delivered is adjusted to an individual’s entists are searching for genetic defects associated needs. This rate of delivery and the amount of drug with CP. They are also investigating in association with remaining in the reservoir are measured and regulated CP various problems and diseases that occur before, with an external censor placed over the pump and con- during and after childbirth.Traumatic events like nected to a computer that assesses and controls the bleeding, anoxia and seizures can release detrimental pump. During regularly scheduled visits, the doctor con- chemicals into the brain causing CP. Many researchers firms and adjusts the rate if needed. Also, the reservoir focus on these. may be refilled at this time if it is nearing empty. About 800,000 people living in the US have CP. It Spasticity in the arms or legs is the most frequent prob- occurs in roughly 10,000 births each year or at a rate lem in CP, but since speaking requires the coordinated of approximately 2 of every 1000 births. This statistic movements of muscles in the face, mouth and throat, CP does not change much, but the abilities of persons occasionally affects the ability to speak as well. Various afflicted are increasingly being enhanced by therapeu- electronic and computerized devices are available to tic advances. Although they face challenges, most peo- assist with communication skills in persons whose ple who have CP are intelligent, contributing members speech is affected by CP. of society. by E.Thomas Chappell, M.D. Movement or speech dysfunction define CP, but unless ucp.org

ABILITY 55 ne side effect of my deafness is that I’m always presuming a physical intimacy, usually where Othere is none. It can get me into trouble and often has. I can’t tell you the number of ill-conceived affairs I’ve had as an adult that started with me putting my hand on someone’s collarbone (which conducts sound like a hollow reed) and fastening my gaze on their lips as if it were all I could do not to bite. It was an inadvertent pickup technique I ought to have found shameful (but didn’t) and misleading. When I was 11, though, I was tied into knots over that excessive need of mine to touch and be touched. All my easy sexual play with the boys was turning furtive and guilty even as my romantic awe of the girls was metamorphosing into something sweaty and insistent. I didn’t know what my racing heart was telling me about desire, but there was no mistaking the root of my longing—to connect. Hearing is usually the way people connect without touching. Sans that sense, I had no way of keeping peo- ple at a safe psychic distance while I tussled with my impulse to wrestle them to the ground. My young body felt burdened by itself, by all the things it craved doing but didn’t dare, by the inertia of that “special” world it had been thrust into, and by the naked exposure of my secret failings.

Our family life that year was undergoing its own trans- formations. In 1961 my father retired from the army and got a job driving a cab. As an army family, we’d been used to a certain degree of privilege. The army bases where we lived were mini worlds with their own doc- tors, housing, schools, and stores, called post exchanges, where military personnel could buy cigarettes, toilet paper, milk, and leather coats at a steep discount. You could get a physical, work out in a gym, or have your teeth fixed, all courtesy of the United States govern- ment. In Germany we even had live-in help, paid to keep the house clean, watch over us all, and fix dinner at night. We felt flush and cared for. When Daddy mus- tered out and the props were snatched away, we sudden- ly realized we’d only been playing at being well-to-do. When we moved from Fort Hood to Austin, it was to a modest house on the south side, then one of the poorer parts of the city. My sister Trudy, by then 17, had changed her name to Gail (a change she’d been plan- ning since her very first day of ballet in postwar Stuttgart, when the German dance instructor pro- nounced her name Truddy, as in Cruddy). As Gail, she ditched her glasses for contacts and enrolled in the the- ater department at the University of Texas. She’d won a partial scholarship and worked odd jobs but lacked cash for books and tuition. There just wasn’t enough money to make ends meet, so Mother went to work at the Big Bear food store as a meat wrapper. We still had a maid, this one a lean, dark woman who, like my mother, resented having to work and slapped her iron against our shirts and blouses as if she were punching someone in the solar plexus. Tenley and I were wary of her. We knew there was no love in her for us. She’d look at us with cold, accusing eyes as if we were the reason she

56 ABILITY couldn’t be with her own two children, exactly our age, sorry, I don’t understand,” had sent the offending who were at home by themselves while she folded our teacher into chagrined retreat, I would snicker under my clothes and fixed us dinner. breath, “Terri—the devil’s poodle.”

That year everyone in our house was busy dealing with My crush on Suzanne went way beyond the correct use their own upheavals, even dreamy little Tenley, who of ‘y.’ She was one of the few teachers not taken aback faced the cold awakening of first grade. If I were going when I zeroed in on her. Once when I came barreling to make my life a happy one, I’d have to do it on my into her classroom, glasses askew and hearing aids own. That may be why at age 11, I made the calculated abuzz, she raised her eyebrows and commanded me to decision to quit acting pissed off at my glasses and hear- sit, as if I were a skittering puppy. She leaned over, ing aids and use them instead as comic props. Laurel pushed my ear molds back into place, settled my glasses and Hardy, Buster Keaton, Charlie Chaplin, Red Skel- back on my face, then gave my forehead a leisurely little ton, the Three Stooges, Lucille Ball, Carol Burnett, flick with her finger. From that gesture on, I was hers. Jerry Lewis, and Daffy Duck: that was the comic cluster Suzanne didn’t flinch from the energy and desperation of of gods at whose feet I worshipped, so I’d learned all my devotion. She simply used it the same way Dolores, the good tricks. With their movie and TV guidance, I my Bambi love, had at Lions Camp—to get me to do started cultivating a talent for risk and self-mockery that what she wanted. What Suzanne wanted was for me to turned me into my own early version of Jackass. I’d learn to speak clearly, without a lisp, without a slur, so open the classroom door with a too-quick jerk and that what I said wouldn’t be obscured by the way I said whack myself on the nose so hard it would send my it. I don’t know why she loved me as much as she did. glasses flying. I’d aim for the wadded-up napkin on the Other teachers gave me their time and attention, but hers cafeteria floor and pratfall right on my butt. I’d flatten was so particular, so physical. I once told her, when I put my body against the school staircase and bump down my hand on her back as she was talking, that it felt as if the filthy steps like a steamrolled cartoon cat. I’d run the words were vibrating in my palm as she said them. full tilt toward the outside cinderblock wall of the gym and scrabble up it until gravity lost me and I’d drop. My Thereafter, when my voice slipped into a flat, monoto- no-holds-barred clowning made my deafness just anoth- nous drone, she’d tease me, trying to coax me out of my er part of the joke, and when I’d jolt or thump or wallop habit of thinking how I ought to be hearing so I could or bang, I made sure my hearing aids would ring like concentrate on how the sound was actually moving mini sirens so I could scream, “I’m a bomb!” and through skin and bone. She meant to help me find the explode in a shower of spit. I even embraced the root physicality of hearing. She’d rest her chin on the despised slurring blur of my speech after I inadvertently back of my head and recite lines from “The Congo,” discovered, when my English class took turns reading with all those boomlay BOOM’s. She wanted me to feel Truman Capote’s A Christmas Memory aloud, that a lisp the chanting beat of that Vachel Lindsay poem right could be used to great comic effect. inside my skull. She’d press her fingers against my windpipe just hard enough for me to feel the pressure of By the time I was 12, I had cemented my reputation as a my own breath as speech in its rawest state. Then she’d class clown with a temper and a streak of the wild. It put her palms on my cheeks or mold my lips into a little would take me another two years before I’d slow down moue, to start me playing with the shapes of my teeth on the tricks enough to reawaken to my own body and and tongue, so I could use them to refine the crude realize I could use all that excess of feeling as a differ- expulsions of air. ent way to hear. I owe that discovery to a tendresse I developed at age 14 for Suzanne Wood Brown, my high Over the next three years, she worked with me like that, school speech and debate teacher, just out of college and using my ardent desire to please her to teach me control still something of a teenager herself. She was a tall, big- over my speech. I would never lose my touch of deaf boned woman with a bit of an overbite. She had shrewd speak, that dead giveaway of a lateral lisp. Even now, if brown eyes and nice thick lips that always seemed to be I let down my guard, the words out of my mouth turn mildly smiling. In the fashion of the time she wore her gluey and thick. But by age 16, after two and a half hard light brown hair in a high-rise beehive. years of effort, I had embraced the pleasure of that disci- pline so intimately, I seldom let down my guard. I was At my hypersensitive age, little things pushed me into keeping tight rein over one or two other impulses as furious crushes. Teachers who remembered to spell my well. My visions, contrary to the doctor’s long-ago pre- first name with a ‘y’ could expect every blessed holiday dictions, would still periodically lift me up and away, commemorated by Mardi Gras beads, plastic loving but the month I turned 16 I put a stop to that. I’d been cups, chocolate roses, or minty little hearts stamped cast in the old theatrical warhorse of Thornton Wilder’s with my sentiments exactly. The lack-loves who spelled Our Town. I’d never been cast as the ingénue before, my name with an ‘i’ could expect an in-class vintage always as the comic relief, but I’d worked hard with performance of deaf incomprehension the likes of which Suzanne to get my speech cleared up, to get a grip on only the brothers Mike and Nicky had seen. After my the slur, to mimic the correct inflections of sentences I string of “Huh? What? Could you repeat that again? I’m couldn’t hear. Being cast as pretty, doomed Emily was

ABILITY 57 well imagine. Around age 13 I was finally able to put a name to my inner roilings when I looked up the word “homosexuality” in a dictionary. I had heard my older sister use the word with some vehemence when describ- ing to my parents how she’d stumbled upon her female college roommate in bed with a woman, and the fact that I found the context intriguing made me suspect the word had particular relevance to me. The definition in the dictionary, “sexual desire directed at a person of one’s own sex,” thrilled me to death. But I wanted fur- ther clarification. I thought I was being immensely dis- creet when I offhandedly mentioned at dinner that night that I’d looked up “homosex—.” I didn’t even have time Terry Calloway to finish the word. It was like I’d shot off a gun and stampeded cattle. The commotion it caused left me with my reward. On the first night of performance, I’d just the strong impression that homosexual was the wrong set foot onstage and before I could get a word out of my side of the sheets to be on. mouth I was pulled up into the air and held dangling above the scene. The cafeteria stage, the school, my The dictionary mentioned desire and that’s how I imag- whole little world—it was like the top of things had ined “homosexual”—as being in the throes of longing. I blown off once more. When I saw my body in minia- knew longing. It seemed a pretty OK state to be in. ture, mouthing words on that tiny stage beneath me, my Longing had moved me to work hard for all my teach- thought was almost a gripe: Who is that saying my ers, but especially the women, because they were gentle lines? I felt cheated of the whole experience of finally with me and that gentleness, besides making me less acting the role of a girl, the easiest and hardest role I’d afraid of disappointing them, made me yearn to please played to date. I’d been dumbstruck to discover the role them. That yearning only intensified with Suzanne, who of ingénue was all about keeping still. Absolutely no reintroduced me to the pleasures of my own senses. She energy required. No need to contort my face into a per- was passionate with me, passionate about what she saw petual grimace the way I did when I played that disap- as my talents. She took chance after chance on me by proving old starch, Lady Bracknell, or make my jaw go entering me into dozens of speech competitions. When I as slack as it could get without drooling when I played finally won one, won a big one, a statewide competition the pesky idiot brother in Antic Spring. All I had to do in the reading of poetry, she and her husband at the time was quell my inner cyclone, keep my face immobile, took me out for lobster, and she gave me my first sip of my eyes wide, and my voice loud and precise enough to champagne right out of her own glass. hear. Then die off quickly. During a rehearsal, after my character Emily kicked off and took her place in the It’s no wonder I longed for her, that my longing blos- town graveyard, one of my male costars blurted out somed into an ache I feared, exulted in, and kept in admiringly, “You look great dead!” Since I wasn’t in check. Or tried to. The same way I tried to keep my sex- motion, the boys had a chance to look me over, see I ual feelings for the boys in check... But even though I actually was a girl and becoming a pretty one at that. It made endless lists of names for the 10 children I thought seemed to have shocked them... I couldn’t wait to test I might one day have, during those years when abortion the effect on a wider audience. was a crime and contraception itself exuded a sulfurous whiff, there was no one more afraid of pregnancy than I, Up aloft in the air on opening night, I felt so angry to be the deaf queer already so taken aback by her own body. missing my anticipated moment of seductive triumph. I’d touch and let the feeling be mutual, but I wasn’t My next thought was a declaration: I will never do this going to get carried away. Not by sex. Not even, if I again. The minute I had that thought, the diffused and could help it, by yearning. I was going to do something floating fabric of my being seemed to regather, narrow with my life. Exactly what, I didn’t yet know, but I was into a funnel, and pour back into my body. I hadn’t almost sure of it. Suzanne had convinced me I was a missed a single cue, but from that moment on I never smart girl, smarter than the nature of my deafness again had another vision, never again left my body allowed people to see. I’d simply have to work that behind. Although sometimes, even now, looking out my much harder to let it be known. All my hard work had to bedroom window at a pumpkin moon or at a thin cold culminate in something extraordinary. That’s what I kept sliver of one, I can feel a pull, almost like a call. telling myself and what the little horoscope booklet I’d bought, detailing the secret power of Scorpios, was My queer impulse was the other thing I was trying to telling me, too. My last year of high school, when we get under control. I think I must have suspected I was seniors were being called in to consult with the guidance queer from age five, and was happy to discover its sexu- counselor about our paths in life, I couldn’t wait to hear al component at age seven with a blonde my age named what he had to say, what guidance he was going to give Sunny during a game we called—and to this day I’m me, what great path he was going to suggest. embarrassed to remember—“milking the cow.” You can meanlittledeafqueer.com 58 ABILITY ABILITY 59 60 ABILITY ACROSS DOWN 1 Senator working to get the Christopher Reeve and 1Soul mate? Dana Reeve Paralysis Act passed 2 Actor Lowe 4 Miss International 2008, Jayna 3 Fashionable 8 Peter, Paul and Mary, e.g. 4 Cancer survivor who made a huge cycling comeback 9 The “Sin City” star who was one of the recipients of 5 “The One” star Jet Love Our Children USA’s “Mothers who make a differ- 6 Olympic light source ence” award. Jessica ___ 7 Women’s Motocross Association champion who is 10 Sundance Film Festival film with an autism theme deaf and won the title in her rookie year: _____ Fiolek 12 Amy Winehouse hit 8 Record 15 They come after downs, hopefully 11 Jazzman with a noble first name 16 Nicholson and Freeman in movie about two people 13 Count in jazz? who decide to enjoy their last days (goes with 46 down) 14 Sundance Festival film about an abused girl whose 18 Follows instructions fantasy life saves her until she can save herself 19 He overcame suppression and intolerance with 17 Very long time periods peaceful revolt 19 Sport 22 Gets close to, ___ with 20 Pres. who abolished slavery 25 That is 21 Brown, for one 26 Bodybuilder’s pride 23 Lives 27 Roman 6 24 Inlaid 29 Have on 25 Tee off 31 Augusta state 28 Get ____ (really hot and bothered about something) 32 Top hockey star formed Foundation to teach under- 30 Jessica Simpson’s sister privileged children important life skills through sport 33 Helping 37 NY railway 34 Striped shirt wearer 38 Important dogs! 35 Offspring 39 More energy efficient bulbs 36 Habitat for Humanity founder 40 Copper symbol 38 Prefix with political 41 Conger, for one 39 Shows genuine concern 42 Charleston state 41 “Goldmember” doc 44 Costa del ___ 43 End of World War II day 47 People who freely help those in trouble and in need 45 Sooners’ locale 49 Voice for civil rights and full equality for African 46 See 16 across Americans 48 Easily usable Scrabble word 51 Region where “The Bourne Supremacy” opens 50 Negative alternative 53 Position at bridge, for short 52 Island, for short 54 Harp cousin 55 Lab work 56 Give it a go answers on page 65 ABILITY 61 ANSWERS

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