THE VOICE OF OVER 50 MILLION AMERICANS
Volume 2009 RJ MITTE AUG/SEPT
M ANAGING E DITOR Gillian Friedman, MD
M ANAGING H EALTH E DITOR E. Thomas Chappell, MD
C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois George Covington, JD Gene Feldman, JD
HUMOR — Too Sexy For My Chair
ASHLEY’S COLUMN — Stop The Presses
SOBEL FOUNDATION — How To Nurture Good News
CHUCK U — Performing Arts Studio West Actors’ Class
ASTHMA — Cat Got Your Lungs?
INDEPENDENT LIVING — Interview With Louis Frick
UN CONVENTION — Words From The Whitehouse
BRAZIL — UN Convention Struggle
ABILITY TO HELP — My First Chance To Volunteer
MARRIOTT’S — Bridges To Work
LANDMINES — Jerry White’s Survivor Corps Mission
RJ MITTE — Breaking Bad Is Good
MEAN LITTLE DEAF QUEER — Terry Galloway
CROSSWORD PUZZLE — Guess Your Best!
EVENTS & CONFERENCES
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ABILITY5 5 ABILITY
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 coverage 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 significant disabilities who are on Medicaid and need an institutional level of care have the right to receive their care in an institutional setting or nursing home. But they are denied the equal right to choose to receive their services in a home or community-based setting.
ADA: 19 YEARS OF PROGRESS At the end of July, we commemorated the 19th anniversary of the Americans with Disabilities Act (ADA)—the landmark civil rights law securing the rights of people with disabilities. As chief Senate sponsor of this legislation, I remember the day it was signed into law—July 26, 1990—as one of the proudest in my entire legislative career. Nineteen years later, we have made amazing progress. Streets, buildings and transportation are more accessible for people with physical disabilities. Information is offered in alternative formats—including closed captioning—so that it is useable by individuals with visual or hearing impairments. Employers are required to provide reasonable accommodations so that people with disabilities can have equal opportunity in the workplace. And we have advanced the four goals of the ADA— equality of opportunity, full participation, independent living and economic self-sufficiency. These changes are all around us, and are so integrated into our daily lives that it is sometimes hard to remember how the world was before the ADA. Last year, we were able to pass the ADA Amendments Act, overturning a series of Supreme Court cases that greatly narrowed the scope of who is protected by the ADA. These cases held, first, that mitigating measures –such as medication, prosthetics, or other assistive devices—must be considered in determining whether a person has a disability under the ADA; and second, that there must be a demanding standard in assessing whether an individual has a “disability.” In each of those 6
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 supports in the community, rather than in an institutional setting. This year marks the 10-year anniversary of the Olmstead decision—which was based on the ADA. In Olmstead, the Supreme Court said “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” Changing these assumptions is what the ADA was all about. Although many states have made progress over the past 10 years in extending home and community-based services, it has been done in a patchwork way that keeps many individuals with significant disabilities on waiting lists or living in states with insufficient services. As a result, there are more than half a million individuals, with various types of disabilities, who do not have adequate community-based attendant services and supports to help them with critical activities of daily living. In the case of an individual with a significant spinal cord injury, this may mean assistance getting ready in the morning and out of the house for work. Such services are critical because if an individual cannot get this assistance, then they are not able to go to work, even if they want to. They cannot benefit from the curb cuts, the accessible transportation, or the reasonable accommodations that employers must provide. The vast progress we have made does not extend to them. This is a profound injustice.
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 attendant supports and services. Every individual with a significant 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 individuals 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 accommodations; and some are still reluctant to hire people with disabilities. An estimated 21 million people with disabilities 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 Landâ€”certainly not with the high unemployment rate among people with disabilities and a lack of available communitybased attendant services and supports. We have more work to do. On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. And I will never forget his final words before taking up his pen. He said, â€œLet the shameful wall of exclusion finally come tumbling down.â€? 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
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.
hat do you think of people with disabilities? I mean, are they attractive folks? Wow, what a crazy question. I’m sorry, I couldn’t help but to ask it. I’m a disabled dude in a wheelchair, so I’ve often wondered how people see me. For the most part, I’ve been pretty lucky over the years with the whole dating thing. I can usually tell whether or not someone is attracted to me. Being laughed at could be a no go signal. Getting spit upon is never a good sign. Being slapped—I consider myself still in the game.
There have been times when I think I’m connecting with a totally hot babe only to find that she’s really not interested in me at all. Of course, I always wonder if it’s me she’s just not attracted to or if it’s the disability that turned her off. It’s not like she’s going to tell me. “Of course it’s not your disability, honey, you’re just ugly.” Well thank God for that. For a second there, I thought you were shallow. I’ve also been out with my buddies and been the one who gets the girl, only to hear my friends mutter, “Man, I gotta get me a wheelchair.” So, I hate to say it but, the disability has helped land me a chick or two…not in the same night, but hey, I’m still young. I haven’t deciphered my appeal; maybe women think a guy with a disability can be trusted. Fools, I say, but I’ll take it. Use whatever you got, baby. Damn right, I’ll take a sympathy date…as long as she’s buying. You never know what people are into. I once dated a girl for two years. She loved to go to the mall with me. Come to find out, she was just using me for my handicap placard. Swine! Don’t worry, the deception was mutual, ‘cause I was just using her to get to her hot mother. (I got a thing for them cougars.) 8
I’ve got to be honest with you…I’m not attracted 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 morning. I’m sorry, I think it’s best if I stay away from my own kind. Maybe I’m shallow. This, by no means, means that I think people with disabilities are unattractive—to each, his or her own. I never really know how others view me. It’s probably not important. I’m glad I don’t have Andy Rooney eyebrows. (That dude needs a weed whacker.) However cliché it might sound, what’s important is how I see myself…which is obviously a hunk, a hunk of burning love. You heard me. I see you undressing me in your mind. Stop it! You’re embarrassing me. Simply put, just like who you are. I do, ‘cause that’s who I have to live with…and it ain’t easy. (I’m moody. Shut up! I’m sorry.) So if you’re mean, rude or bitter, you’re probably an ugly person. As for looks, we are what we are. Take it or leave it. Life will still go on. Don’t judge a book by its cover, lest ye be judged back by the book. And don’t let the judge throw the book at you after you’ve been booked. (Incidentally, check out my book on Amazon.com…only $14.95.) So are people with disabilities attractive? Who knows? Who cares? My opinion is, a person with a disability brings a lot to a relationship table (besides, possibly, their own chair). It’s about seeing beauty beyond the physical realm…or through a pair of binoculars. It involves a real connection of seeing into your partner’s soul. It doesn’t always have to be about appearance or sex...that’s only 96% of it. There’s somebody for everybody out there (even Andy Rooney). Yeah, you might not get that hot babe or that gorgeous guy, but who knows? You might get something better: someone who loves you for who you are. Stranger things have happened. “Ham on a Roll”
by Jeff Charlebois
am sitting in downtown LA right now at my hotel which is about ten minutes away from the Home Depot Center. I am one of the many athletes waiting to take part in X Games 15. This is my second year invited to attend, but my first year competing because I was out last year due to an injury.
didn’t go well for me..hahaha..so this year I have been hard at work getting ready. Because I now ride for Honda/Red Bull Racing, they built me a separate SX bike. I love my supercross bike; it is built just for me. Suspension is definitely very important, so I went out and tested the bike. It fits me perfectly!
As I have mentioned before, my sport is motocross. Motocross is raced on outdoor tracks usually at least two minutes long or longer. I race two motos and we are scored by the added points from both finishes. We race from15 to 20 minutes, and the course consists of long straightaways and turns and some jumps. For X Games I have to race supercross; it is not what the girl racers are used to at all.
I already had one practice; one more to go and then on to the race. Everyone here is pumped to win Gold. It is pretty cool to be here as a spectator too, because there are so many different athletes here and so many different sports—never a dull moment and always something to watch and do. I have a friend who competes in skateboarding on the vert ramp, another friend who does BMX freestyle, and another friend involved in Rally car. I try to get to all of the events to cheer them on because I know they will be cheering me on.
The boy riders compete in two different series: One is motocross, the same circuit as the women, raced during the summer outdoors. The other series is in the winter/spring months and it is called supercross, raced mostly indoors, but some outdoor stadiums are also included. Supercross is a shorter track, very tight and mostly filled with jumps: triple jumps, double jumps, table tops...step ons, step offs, long sets of whoops (small, tight jumps that you blast through or double jump through). It is way crazy! All of the events at X Games are either at the Home Depot Center or the Staples Center, so obviously there is no place for a huge outdoor track. They wanted to include the girls for the first time last year so the competition was a supercross race. The boys were already racing supercross there and also doing “freestyle” moto. 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
If you ever get the opportunity to attend X Games, come and check it out. If you see me watching, come by and watch with me! It is just a great place to hang out with everyone and have a good time. Stop the presses! Can I get this last minute news flash before print?...I did it! I won Gold at X Games last 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 was! Thanks to the deaf fans who waited around to see me right before my medal ceremony. It really meant a lot to me, and I am so glad that I had the chance to meet you all! More next issue... ashleyfiolek.com
How to Nurture Good News Until it Consumes You
t is the summer of 2009 and the euphoria of the election is receding. Yesterday I felt guarded optimism. Today CNN flashes news of 10 percent unemployment and roller coaster markets. A neighbor I bumped into buying batteries at the variety store shares the news about another foreclosure in our little village–a devastating blow for a family on her road. Friends I know have nightmares of wolves at their heels. Even those not imminently endangered take tender steps. And most personally for me, our nonprofit sector is especially hard hit. When we say that “charity begins at home,” it feels like “charity is staying at home.” Philanthropy now is a luxury product. I notice, though, that we still treat our family to the movies, keep a subscription to a favorite magazine, or even buy a box of out of season raspberries before denying ourselves. These are the dollars we might otherwise spend on charity and we justify and savor these choices instead of the island vacation, or the weekend at the spa. I know that I do. Yes, we are shaken out of our comfort zone. And yet…although extravagance has dried up with yesterday’s raindrops, charity too, is seeping back into our lives, an insistent trickle in a drying riverbed: an impulse that cannot be checked. Instead of resenting what “isn’t,” I’ve learned to nurture the good news that “is”…and have found that this act of gratitude transforms. Good and bad will happen. The control we have is how we perceive and what we do with the events in our lives. I am far from encouraging you to be supremely brave, or unrealistically cheerful in the face of anxiety, concern or sorrow. However, I quote Abraham Lincoln, a famously sensible man who said, “You are as happy as you make up your mind to be.” I had a front row seat to an unthinkable human drama, and give testimony to the truth of nurturing gratitude.
I was a parent who received the phone call that all parents dread. It was from my son Andre’s school nurse. He was 18 at the time, and the nurse relayed a medical complaint that within hours escalated into the event that changed the life of my family. We survived the 417 days of the indescribable agony of his illness, only to lose him to an inoperable malignant brain tumor. What followed were my mother’s fatal stroke and my husband’s suicide within the same year. Even as I write this, there is an unreality to it, as if I were describing someone else’s life. Yet now, 10 years later, I believe that you can shift your state of mind if you choose to believe that you can. You need to start by cataloguing the elements in your life that make you grateful. This simple act brings you fully into the moment, and almost immediately you can sense it creating a positive shift. Why? There are studies that have a name for the phenomenon they call “subjective well-being” (SWB) and what can help maintain it. The components of SWB have even been measured with some scientific validity. Mathieu Ricard, a Buddhist monk, and close associate of His Holiness, the Dalai Lama, agrees with their tenets. He should know, as Ricard was pronounced the “happiest man in the world” by Shift Magazine of the Institute of Noetic Sciences. Extensive neuroimaging of his brain at the University of Wisconsin registered the highest level ever recorded (off the scale) in the area of the brain associated with positive emotions. The elements identified to create and maintain happiness were identified as: expressing gratitude, positive thinking, forgiveness, acts of kindness and belief in a higher power or purpose. Contrast this with sobering research about lottery winners. Researchers of these lucky people observe what they call “hedonic adaptation” whereby the winners’ levels of happiness are only temporarily boosted. They quickly return to their baseline temperaments and at times even experience a slump.
You are as happy as you make your mind up to be. Gratitude is how I survived long enough to create our foundation. I founded the Andre Sobel River of Life Foundation (ASRL) to honor my child, to make sense of my losses and to give life to a mission that I understood. ASRL helps the most unfortunate of parents, the ones with catastrophically ill children who are also single caregivers. We assist families who have run out of financial and emotional resources. Ours is a hugely necessary work that hinges on money. We don’t provide comforting teddy bears, psychological assistance, or education. We solely provide assistance funds. We save homes from foreclosures, provide food that often gets delivered to homebound parents, and prevent utilities from being shut off. The families we help are feeling the financial downturn exponentially more than most, and sadly so are organizations like ours that help them. Like so many in our sector, our endowment plummeted just as the need for more aid began to spike. And yet…in the midst of our foundation being anxious, not only about the future of our constituency, but also about the future of charitable donations, the clouds unexpectedly parted and we received a major corporate gift. This philanthropic gift provided a river of support, allowing us to expand our work and attend to the needs of families we simply couldn’t help before. It was The Genentech Foundation who found us (we were not seeking them), and saw that we were a perfect fit with their benevolent intention. They were seeking an organization that works as we do: supporting pediatric patients with compassion, providing a 24 hour turnaround and with minimal overhead. We became the centerpiece of their newly created Everyday Needs Assistance Program.
What to do with Bad News: These days, we need to deliberately guard our frame of mind and protect our spirit. Try to edit news intentionally according to some criterion. For some reason, bad news spreads like “viral marketing.” We learn about an earthquake, train wreck, bovine or avian epidemic faster than if our next door neighbor just won the Nobel Prize. What we can do is: read, watch and listen selectively and filter according to: is it in my power to do anything about this happening? Would I choose to change this particular event, above all others if it were possible? Am I watching this out of morbid curiosity? This type of self talk is useful. In fact, without it, we risk our equilibrium. A negative mindset can slowly creep into our subconscious, spreading slowly, like ink on a blot forming a Rorschach image of underlying hopelessness. Soon it is hard to tell when it was that we became pessimistic people. We can shore up the spirit that is within us, always at our service. It is willing to go the way you direct it.
What to do with Good News: Good news is to be welcomed with open arms, put on a pedestal with a world built around it. When we find reasons to be grateful, they will color our organization, our day and our life. Embrace good news until it becomes the lens through which you see your world. Like the insistent impulse of charity, it will gradually take over, and become what you believe in. This will magnetize more good news, until there is no need to make the effort of seeing the cup half full, because it is full. andreriveroflife.org
by Valerie Sobel
When we received this gift, rather than just deposit the check and continue to wring our hands, I went to my little chapel and allowed gratitude to seep into my very being. I continually allow this intentional activity to make the sustainable difference to my subjective wellbeing; 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 darkest 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 everything” 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 balance 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 for any performer, but for actors with physical or developmental disabilities, the experience can be even more overwhelming. Not only are roles of characters with disabilities in short supply in film and television, they tend to be highly coveted by actors who do not live with physical challenges in their own lives. So what is a talented actor with a disability to do if he or she wants to “make it” in Hollywood?
The answer, according to a California collective called Performing Arts Studio West (PASW), lies in thorough preparation and expert training. Within the walls of its unassuming brick building in Inglewood, PASW equips its eager actors with dance, voice, and acting training, gearing each of them for the occasionally bitter winds of Tinseltown, and instilling each with the confidence that his or her unique disability is an asset rather than a limitation. The approach has paid off, leading several PASW clients to work on shows like ER, Saving Grace, and The Secret Life of the American Teenager. PASW’s rigorous training is supplemented by visits from recognizable working actors, as well as questionand-answer sessions aimed at giving the straight scoop to PASW clients. On a recent Wednesday morning, PASW was visited by actors Scott Krinsky and Patricia Rae, both of the cast of NBC’s Chuck. Both actors emphasized the need for perseverance in the face of inevitable setbacks. “If you don’t get a part, that wasn’t your part to have,” Krinsky said. “You’re just one more audition closer to 14
the part that’s going to be yours.” Krinsky admitted to periods of frustration in his own career, wryly noting that he was frequently cast as drunks before landing the role of Jeff Barnes, a member of the “Nerd Herd” on Chuck. “I feel like where I am now in my career is really where I am living the dream,” Krinsky said. “It just took some time.” Rae was quick to point out that Krinsky’s role on Chuck was offered to him because a producer remembered him from a five-episode stint as Daryll on The O.C. “Always be professional, and be courteous to everybody,” Rae told the PASW clients. “It doesn’t matter if you’re an extra or the star. You never know where your next job is coming from.” Though neither Rae nor Krinsky have disabilities, both find the struggles of actors with disabilities somewhat relatable to their own. “I had an awakening when I was in a casting office at the beginning of my career,” Rae said. “The woman said to me, ‘You’re Latin, you’ll never work.’ I just said, ‘Okay, we’ll see about that.’ And I’m working. For a male Caucasian actor, there are challenges. But add a different gender to it and add any sort of minority aspect to it, and that’s something else. I’ve had to overcome so many obstacles, and I still say it’s possible.” In addition to the role of Bolonia on Chuck, Rae’s tenacity has landed her work on series such as Law & Order and Malcolm in the Middle, and in feature films such as 2004’s Maria Full of Grace. “Acting feeds my soul,”
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 reality, 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, Matteo 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 finally 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 replacement 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 if I heard a sound, or if my cat, Basil, curled up on my legs again and woke me. I’m a light sleeper. After that first hour of deep sleep, anything can stir me from slumber. But this time, it only takes a moment to realize that it’s my own body waking me up, murmuring in my chest, telling me I can’t breathe. I’m used to it by now, so I remain calm. I try to take in a short breath, gauge how severe the wheeze of breath squeezing through my lungs is, and I clear my throat. I take several more breaths, deeper now, hoping it is just a slight irritation and I’ll be able to drift back to sleep without getting out of bed. So far, this is just wishful, dreamy thinking. I always have to get up. I slip out of bed, walk to the medicine cabinet in the bathroom, and grab my red emergency inhaler for quick relief. I breathe out, my chest wheezes and constricts and I cough. I haven’t exhaled all the air in my lungs, but with my next breath, I’m inhaling a misty steroid to stop my bronchial tubes from swelling any further. In the next few minutes, the muscles relax and sweet, fresh air fills my lungs once again. Asthma, as I recently learned, is classified as a disability by the Americans with Disabilities Act (ADA). Disabilities are defined by impairments that limit one or more “major life activities.” Since breathing, apparently, is a major life activity, those suffering from asthma are also
considered to have a disability, and can receive SSI benefits if it is severe enough. Asthma is a chronic illness, like diabetes, cancer, hypoglycemia, and HIV, and is shared by approximately 300 million people around the world. I haven’t always had asthma. I wasn’t the kid who couldn’t play sports without packing the inhaler, I was never rushed to an ER by a worried parent and I never got the sniffles and itchy eyes around flowers or from dust or the numerous pets we adopted. My symptoms started when I was 19. In the summer of 2007, I came down with what I thought was a nasty respiratory disease which kept me up all night hacking and wheezing. Some nights, instead of getting rest, I would walk downstairs and then pace around outside in the cool night air until my lungs would calm down enough for me to return to bed. Hesitant to see a doctor at the time, I looked online to seek answers. My symptoms seemed to indicate bronchitis. It’ll go away, I thought, so I stocked up on cough suppressants and Nyquil. But after a month of coughing, wheezing, and generally feeling like I was suffocating in open air, I decided it was time to go to the doctor. (It probably didn’t hurt that my boyfriend threatened to leave me if I didn’t go.) At the clinic, my pulse was taken, my blood was drawn
and my chest was X-rayed. On the scan, large spots appeared, which my doctor explained were patches of dead air that I wasn’t exhaling. Since I couldn’t get rid of that dead air, I couldn’t inhale fresh air to replace it, which is why I felt like I never got enough air, no matter how many breaths I took. When my lungs were irritated, my airways would swell and restrict my air intake even more. My doctor put me on a bronchodilator and gave me a prescription for a daily steroid to be taken once every four hours for the first few days, then twice a day after that. The prescription included my trusty red emergency inhaler for when the other medication wasn’t enough. One week later, the results from my blood test proved decisively that I was allergic to my two cats. The doctor was quite clear about this: “ You should get rid of your cats,” she said. As any animal lover would know, this was an incredibly difficult decision to make. After all, I’d had my cats longer than I had asthma, and I had never experienced any other allergic symptoms. I took the medication as prescribed, added over-the-counter allergy meds to the mix, and capped off my sleepless nights with a handy dose of albuterol. I am certain this would have been an easier process if Basil did not insist upon sleeping with me every night; but cats will be cats! See, here’s the thing about Basil: he and I take care of
each other. When I found him as a kitten wandering around a Walgreens late at night, I didn’t know if I could keep him. In a few days I would be starting work as a resident assistant at my college dorm where pets were strictly forbidden. But I know what it’s like to be homeless, and I know how cold Chicago gets in the winter, so I took him in, against the rules. Through the very challenging, stressful months that followed, Basil was always there to curl up on my lap and cuddle with me when I was down. Because he needed me, I kept him. And even when the staff found out about him and I lost my job and my apartment, I took him with me. We crashed on friends’ couches and eventually moved in with my boyfriend and his cat, Rodney. I wasn’t going to give up on this little cat. The way I saw it, he never gave up on me either. Today, my asthma is, for the most part, under control. My allergies to my cats have actually subsided. Although I am still very allergic to other people’s pets, I have fewer asthma attacks. Maybe someday it will go away completely. Maybe it will never go away. What I’ve learned that’s really important: never to let a disability take away the things in life that give you joy, even if that involves carefully regimented drugs, learning a new way of doing things, or fighting against the people who say you can’t. You can. Your cat will appreciate it too. 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 Berkeley in the early ’60s. The university hesitated to admit Ed because of his disability. 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 cripples 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 sociological, 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 publications were essentially forums for people with polio and various disabilities to share how they managed their lives and maintained their productivity with severe disabilities. This notion was the basis for development of the Independent Living Center (ILC). Today, there are hundreds of ILCs that exist throughout the country. ILCs work with people with disabilities of all ages and all disability types. Core services include peer counseling, 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?
alifornia is often looked at by the rest of the country and maybe the world, as a leader and an innovator. In the ’60s and ’70s Berkeley was known as the home of radical politics and progressive social movements. Mario Savio and the 1964 free speech movement set the tone that led to the development of the model for the Yuppies and the Black Panthers, particularly influencing UC Berkeley campus anti-war movements and tactics for student involvement in ethnic and racial social movements.
Frick: Every state has what’s called a SILC, State Independent Living Council. The SILCs are run by a government 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 Centers in California, we play more of a local role, whereas the SILC provides more of a directive on a statewide level about how programs and services are provided for people with disabilities. Cooper: Do you provide certain parameters that an ILC should meet? What are some of the nuts and bolts of this? Frick: Sure. That’s a great question, because every three years, each SILC has to create a state plan for indepen-
dent living or SPIL. Right now, California’s SILC is working on laying the foundation for the SPIL that will be taking effect starting in 2011. So, we’re in the process of setting up various focus groups, holding meetings around the state to gather input from people with all types of disabilities, with all type of needs. Once that information is gathered and distilled, there will be a three-year state plan created which will be a directive for what gets doneover the next 30 years by ILCs and other organizations that provide services to people with disabilities statewide. Cooper: This happened three years ago as well, and every three years you refine it? Frick: Either refine it or in some cases really redo it. Right now we’re a little more than halfway through the current plan, which is 2008, 2009, and 2010. Some of the issues are set forth in the plan we’re working on. If those have been completed, they may come off of the 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 example of that. In the current plan, one of the things needed on a statewide level was to do community organizing with underserved populations of people who have disabilities. So for example, we have a program called the Hispanic Community Organizing Project. Our goal is to work with people in the Hispanic community who have disabilities and work with their specific issues, whatever is important to this very small group. Within the small groups around the counties, each group is in a particular neighborhood, and that group determines what their specific issues are. So it might be safety in crossing streets or it might be learning how to interact with law enforcement. At a very grassroots level, this program is designed to work with various disenfranchised groups of people who have disabilities. Cooper: Is it disability-centric? Does the SILC address disability issues at a group level, or is it individual? Frick: It’s a little of both, frankly. In some cases it really becomes very individualized, because if somebody is deaf or hard of hearing, their needs can be very different from somebody who has a visual impairment. We’re almost three years into this program, and we’ve learned that it really is a very individualized thing. First of all, you’re dealing with these very small groups, and within those groups, different people have different needs. So it really is very customized, depending on the group and the individual needs within that group. What we’re doing in San Diego, I know, is very different from what’s being done in the Bay Area, for example, because they have a whole different set of things that are important to them. Cooper: Do you look at the different ILCs across the state and discuss best practices with other ILCs during conferences?
Frick: Absolutely. That happens in a couple of ways. Aside from the SILC, I’m also a member of a statewide organization which is similar to a trade organization. There are 29 ILCs in California. Most of those, our center included, are members of a statewide organization called the California Foundation for ILCs. All of the center directors who are members sit on the board of the SILC and we meet three times a year and have conferences where we talk about best practices within the ILCs. Cooper: And on the national level, you’re part of the National Council of Independent Living (NCIL)? 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 chosen to step off that board and focus my efforts more locally on a statewide level. However, I’m still a member of NCIL and on a number of subcommittees. Cooper: So you know John Lancaster. Frick: I was on the committee that hired John as the executive director six years ago, and John actually just retired last month. The board chair for NCIL, Kelly Buckland, was recently hired as the new executive director to take over for John Lancaster. We just had our annual conference, so all those changes have just taken place. Cooper: I’ve known John for many, many years. Darn, I’m getting old. Did I read something that said there’s actually extra funding for the ILCs in California? Frick: Yes. As a matter of fact, on the national level, that’s really the result of NCIL’s work. When the stimulus package was approved, it included an increase in funding for ILCs over the next couple of years. So, federal money will go directly to the centers in October. The Department of Rehab has also been awarded increased funding through another component of the stimulus package. So there will be quite an influx of additional funds to centers and to statewide organizations over the next couple of years. I’ve been voted by the majority of the center directors around the state to represent them on the SILC, and I’m really excited to be part of the development of the new state plan. Just in the last two minutes of our conference call, we started to lay the foundation to make that successful. With the new stimulus money and all this new energy and invigoration in the movement, I think this is an awesome time to be involved in the development of this new plan. Earlier you mentioned ABILITYJobs.com, as an example. I think employment is a huge part of that piece. We have a tremendous opportunity to get people back to work and use the stimulus money for rehab and employment of people with disabilities. I’m eager to play a part and help move this agenda forward in a really dramatic way over the next few years. calsilc.org a2isd.org ABILITY 19
he United States signed the Convention on the Rights of Persons with Disabilities (CRPD) at United Nations Headquarters, July 30, 2009. US Ambassador to the United Nations, Susan Rice signed the CRPD on behalf of the US. This Treaty, the first human rights convention of the 21st century adopted by the United Nations, advances the human rights of 650 million people with disabilities worldwide. It fosters equal protection and equal benefits under the law for all citizens. It rejects discrimination in all its forms, and calls for the full participation and inclusion in society of all persons with disabilities. The United States joins 141 other countries that have signed this Convention in pursuit of a more just world. President Obama will soon submit it to the Senate for consideration and approval. A week before the UN signing, President Obama took a new step forward for our country and announced that the United States would sign the CRPD. Following are the speeches that Secretary of State, Hillary Clnton and the President gave in anticipation of the signing.
HILLARY CLINTON It is not surprising that among the priorities that President Obama has set for us is a commitment to people with disabilities, and it is an example of what we are trying to demonstrate and achieve throughout the world. Because for hundreds of millions of people, the future is determined not by the scale of their ambitions or their 20
willingness to work, but by physical conditions that unfairly limit their access to jobs, education, and the public life of their community. This is, as many of you in this room know so well, an occurrence that happens every minute of every day. I see it not only in our country, but throughout the world. I’m proud that the United States has set such an example, and many of the pioneers who helped to both craft and pass the Americans with Disabilities Act [ADA] are here today for this next chapter. What we are doing now with the UN Convention on the Rights of Persons with Disability, is sending a clear message that the United States, as part of our foreign policy, will work to remove barriers and create a world in which people have the dignity and pride that they deserve. [applause] And this Convention makes absolutely clear that discrimination against people with disabilities isn’t only an injustice, it is a strain on economic development, a limit to democracy, a burden on families, and a cause of social erosion. By providing this blueprint for ending discrimination, the UN Convention will improve our world by many measures. Now, we have come a long way in the 19 years since ADA ushered in a new era of opportunity for our citizens, and this Convention points out how much further we have to go. I’m going to make sure that this Convention is reflected in our policies around the globe, [applause] and to that end, I intend to ask our Bureau of Democracy, Human Rights, and Labor to make the core
for people with disabilities a central element in the State Department’s strategy worldwide to ensure that we carry out the Obama administration’s goal of spreading opportunity and standing against injustice whenever and wherever we see it. 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 for the President’s strong support, support which he expressed during his election campaign and support which he has turned into reality by pushing all of us to make sure that we acted. The 19th anniversary of the signing of the Americans with Disabilities Act [ADA], as all of you know, falls on July 26th. And so what more fitting opportunity could there be than for our President to assert his personal and our nation’s commitment to the UN Convention? It is a great honor and privilege for me to be able to introduce President Barack Obama. [applause, cheers]
PRESIDENT BARACK OBAMA Thank you. Thank you. First of all, how about my Secretary of State? [applause] She is doing an unbelievable job. She’s traveling all around the world delivering a message that America is back and ready to lead. And everywhere she goes, she is representing us with grace and strength and we are very fortunate to have her. I’m also lucky to have an outstanding Attorney General in Eric Holder. [applause] My Secretary of Labor, who’s committed to these issues, Hilda Solis. [applause] We’ve got a couple of governors in the house. At least I see one of them over here, Governor David Paterson. [applause] And I think that Christine Gregoire was here. There she is. [applause] Of Washington State. I want to thank the outstanding members of Congress who are on the stage: Senator Dan Inouye, Representative Steny Hoyer, Representative Robert Andrews, Representative James Sensenbrenner, Representative Jim Langevin. Thank you so much. [applause] And not on the stage but extraordinarily important are three key figures who helped to get the original ADA passed. I want to acknowledge them. First of all, not able to attend, but this guy is a fierce warrior on behalf of the disabilities community, Tom Harkin. He couldn’t be here. [applause] Another person who could not be here but was instrumental in guiding the passage of this landmark legislation, Bob Dole, but his wonderful partner Senator Elizabeth Dole is here. [applause] And Attorney General and somebody who worked very hard on this issue, Richard Thornburgh. [applause] Welcome to the White House. We are thrilled to have you all here for an historic announcement regarding our
global commitment to fundamental human rights for persons with disabilities. I’m also honored to mark the anniversary of the historic piece of civil rights legislation with so many of the people who helped make it possible. And I’d like to reflect on that for a few moments. I’m reminded today of my father-in-law, some of you have heard this story, Fraser Robinson. He was Michelle’s hero. When you talk to her about her dad, even today, she just lights up. He was a vibrant and athletic man who provided for his family as a shift worker at a water treatment plant in Chicago. In his early 30’s, he was diagnosed with multiple sclerosis. And even as it progressed, even as he struggled to get dressed in the morning and used two canes to get himself to work every day, despite the fact that he had to wake up a little bit earlier and work a little harder to overcome the barriers he faced every day, he never complained. He never asked for special treatment. He just wanted to be given the opportunity to do right by his family. Never missed a day of work. He would have trouble buttoning up his own shirts, but he would make sure he woke up in time to do it. And by the time I met him, he would struggle with those two canes, but even if he had to go over a bumpy patch of grass to watch his son’s ball games or go up a flight of stairs so that he could see his daughter dance, he would do it. This was before the ADA passed. I think about him all the time when I think about these issues. It’s a reminder of the very promise of the ADA. 19 years ago this weekend, Democrats and Republicans, advocates and ordinary Americans, came together here at the White House to watch President George H.W. Bush sign the ADA into law. Folks traveled from all across America to witness a milestone in the long march to achieve equal opportunity for all. But like all great movements, this one did not begin or end in Washington, DC. It began in small towns and big cities across this country. It began with people like Fraser Robinson showing that they can be full contributors to society, regardless of the lack of awareness of others. It began when people refused to accept a second-class status in America. It began when they not only refused to accept the way the world saw them, but also the way they see themselves. When quiet acts of persistence and perseverance were coupled with vocal acts of advocacy, a movement grew, and people marched and organized and testified, and parents of children with disabilities asked why their children, who had the same hopes and dreams as children everywhere else, were left out and left behind. Wounded veterans came home from war only to find that despite their sacrifice for America, they now felt excluded from America’s promise. We had a little meeting before we came out, and Tony ABILITY 21
Coelho, who was instrumental on this issue, spoke in just incredibly moving terms about what it meant for him to be an epileptic and the fact that discrimination was rife. He was rejected from the priesthood because that was considered unacceptable. He was rejected from the army because that was considered unacceptable. Those experiences could have just been internalized, and people could have felt doubt, but instead it became a source of strength, and step by step progress was won. Laws were changed. Americans with disabilities were finally guaranteed the right to vote, a right that only has meaning when you can enter the voting booth to cast that vote. Folks were extended certain protections from discrimination and given the rehabilitation and training to go to the job. Even though we still have a long way to go with regard to education, children with disabilities were no longer excluded, no longer kept separate, and no longer denied the opportunity to learn the same skills in the same classroom as other children. Now, even two decades ago, too many barriers still stood. Too many Americans suffered under segregation and discrimination. Americans with disabilities were still measured by what folks thought they couldn’t do, not by what they can. Employers often assumed “disabled” meant “unable.” Millions of Americans with disabilities were eager to work but couldn’t find a job. An employer could have told a person with a disability, “No, we don’t hire your kind.” That person then could have tried to find recourse at the courthouse, only to find that she couldn’t enter the building, and wouldn’t find a receptive audience even if she did. What was needed was a bill of rights for persons with disabilities, and that’s what the ADA was. It was a formal acknowledgment that Americans with disabilities are Americans first, and they are entitled to the same rights and freedoms as everybody else, a right to belong and participate fully in the American experience, a right to dignity and respect in the workplace and beyond, a freedom to make of our lives what we will. In a time when so many doubted that people with disabilities could participate in our society, contribute to our economy, or support their families, the ADA assumed they could. Americans with disabilities didn’t ask for charity or demand special treatment, they only wanted a fair shot at opportunity. They didn’t want to be isolated, they wanted to be integrated. Not dependent but independent. And allowing all Americans to engage in our society and our economy is in our national interest, especially now, when we all have a part to play to build a new foundation for America’s lasting prosperity. So the ADA showed the world our full commitment to the rights of people with disabilities. And now we have an opportunity to live up to that commitment. Today 650 million people, 10% of the world’s population, live with a disability. In developing countries 90% of 22
children with disabilities don’t attend school. Women and girls with disabilities are too often subject to deep discrimination. Disability rights aren’t just civil rights to be enforced here at home, they’re universal rights to be recognized and promoted around the world. And that’s why I’m proud to announce that next week, the United States of America will join 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities. [applause, cheers] The first new human rights convention of the twentieth century. This extraordinary treaty calls on all nations to guarantee rights like those afforded under the ADA. It urges equal protection and equal benefits before the law for all citizens, reaffirms the inherent dignity and worth and independence of all persons with disabilities worldwide. I’ve instructed Ambassador Susan Rice to formally sign the Convention at the United Nations in New York next week, and I hope that the Senate will give swift consideration and approval to the Convention once I submit it for their advice and consent. Even as we extend our commitment to persons with disabilities around the world, we’re working to deepen that commitment here at home. We’ve lifted the ban on stem cell research. We’ve authorized the Children’s Health Insurance Program, continuing coverage for seven million children and covering of an additional four million children in need, including children with disabilities. I was proud to sign the landmark Christopher and Dana Reeve Paralysis Act, the first piece of comprehensive legislation specifically aimed at addressing the challenges that are faced by Americans living with paralysis. We’ve nearly doubled funding for the Individuals With Disabilities Education Act. [applause] We’re strengthening anti-discrimination enforcement at the Justice Department. We’re creating a new Special Assistant position at the Department of Transportation just to focus on accessible transportation. [applause] We’ve launched the Year of Community Living to affirm the fundamental right of people with disabilities to live with dignity and respect wherever they choose. [applause] So I’m proud of the progress we’ve made. But I’m not satisfied, and I know you aren’t, either. Until every American with a disability can learn in their local public school in the manner that’s best for them, until they can apply for a job without fear of discrimination and live and work independently in their communities, if that’s what they choose, we’ve got more work to do. As long as we as a people too easily succumb to casual discrimination or fear of the unfamiliar, we’ve still got more work to do. As we continue that work, we should remember just who it was that the ADA was all about. It was about the young girl with cerebral palsy who just wanted to see a movie at her local theater but was turned away. It was about the Vietnam veteran who returned home paralyzed and said he felt like he’d fought for everyone but himself. It was
about the thousands of people with disabilities who showed up at public hearings all across the country to share their stories of exclusion and injustice, and the millions more they spoke up for.
know was that President Roosevelt’s disability made absolutely no difference to his ability to renew our confidence or rescue our economy and mobilize our greatest generation to save our way of live.
Because they did, we live in a country where our children can grow up with every opportunity to learn and compete, where our disabled veterans returning from Iraq and Afghanistan can navigate public places more easily, and where 54 million Americans with disabilities can pursue their full measure of happiness. And what we’ve learned, what they have taught us, is that it is far more noble and worthwhile and valuable to make it possible for these Americans to live up to their full potential, because when we do, it makes all of us more whole. It makes our union more perfect. It makes the United States of America strong.
Let me correct that. I actually think it did make a difference in a positive way. What he told us was that further progress must, of necessity, depend on a deeper understanding on the part of every man and woman in the United States. I believe we’re getting there, and today, because more than one in five Americans live with a disability, and chances are the rest of us love somebody with one, we remember our obligations ensuring their every chance to pursue the American dream. We celebrate the courage and commitment of those who brought us to this point, and we recommit ourselves to building 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 might not notice unless you’re really paying attention, 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 during the renovation of the West Wing 75 years ago, making 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 didn’t even know that President Roosevelt had a disability. And that means that what most Americans also didn’t
So thank you all for being here, and let’s sign this bill. [applause]
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 turmoil and very few votes in the Brazilian Congress, the movement of people with disabilities set an example of citizenship, organization, union and strength, by managing to pass—in a record time of nine months— the Convention on the Rights of Persons with Disabilities (CRPD). Because of its constitutional status, the CRPD required a 3/5 majority approval in two votes from each house—House of Representatives and Senate. Activists from all areas of disability, government agencies and the social movement, got together and showed Congress that 14.5% of the Brazilian population—the biggest and most excluded minority in Brazil—possessed the determination and political strength to ratify the first human rights treaty of the 21st Century.
I had the joy and honor to actively participate in that process. During that time, I was able to wear my many hats: advisor at the National Disability Agency, National Coordination Office for the Integration of People with Disabilities, CORDE, headed by Izabel Maior; citizen and activist for the rights of persons with disabilities; journalist; and coordinator of Inclusive—Agency to Promote Inclusion, a news and content agency that covered every step of that challenging journey. My primary motivation for being there was for my daughters, Amanda, my 5-year-old with Down syndrome, and her older sisters, Luiza and Cecilia, who have all brought much delight to my life. On September 21, 2007, to celebrate the Brazilian National Day of Fight of Persons with Disabilities, CORDE promoted a TV program in partnership with Bank of Brazil, aired by the government TV channel throughout the country. The Minister for Human Rights, Paulo Vannuchi, opened the program, announcing that President Lula sent the Portuguese translation of CRPD to Congress, with the recommendation that it would be treated like an amendment to the Constitution, to guarantee the highest status possible. Specialists in the Convention spoke at the program and answered questions by the viewers. 24
The President of Congress set the vote as a priority, but the process was stuck at a special commission to analyze the document; unfortunately, the commission did not have enough members to start working.
BUILDING UP A STRATEGY In the meantime, many countries were concluding their ratification processes and it looked as if Brazil wouldn’t be among the first 30 countries to approve the document and was at risk of being left out of the first Party States Conference. The delay would mean losing the possibility to include a candidate for the monitoring committee. At that time, I was diagnosed with breast cancer. Although the diagnosis pulled me away from CORDE, it gave me more time and freedom to act virtually, through the Internet. Using Inclusive, a free blog that I created to post news related to disability issues and to provide content to promote inclusion, I started producing news about the Convention. I posted alerts regarding the Convention and passed it on to the press and discussion groups on disability issues. I suggested that people call or write their representatives, urging them to vote at the Convention. Together with activists from other states—Ana Paula Crosara, Fabio Adiron, Claudia Grabois, Marta Gil, Lais Lopes, Flavia Vital, Barbara Kirchner, among many others—we joined forces with the movement Sign Inclusion, a web manifesto that was already collecting signatures for the Convention ratification. The National Council for Persons with Disabilities Rights joined in, and we had a virtual strategy meeting through Skype to find ways to achieve what, at that time, seemed so far away. Inclusive became our main tool to promote the Convention. I translated UN documents and resources from their Enable website into Portuguese and posted them on Inclusive. I visited Enable every day to see if any more countries had ratified. I scoured the Internet for any and all news on the subject, and then translated and distributed that to the media. I even uploaded a poster saying, “Ratify Now!” followed by the number of signatures for ratification, and the question, “What about Brazil?”
We produced and distributed a Mourning Letter to all congressmen, expressing our dissatisfaction for the delay. We urged everyone to do their part, calling and writing to their representatives and asking when they would vote on the matter. At the end of April in Sao Paulo, during Reatech, the biggest Rehabilitation Fair in Latin America, many contacts were made and new support signatures for the ratification were collected. On May 3, many groups went to the streets in Rio, Brasilia, Uberlandia, Salvador and other towns, to collect signatures in favor of the ratification.
FIRST ROUND IN THE HOUSE OF REPRESENTATIVES After all those efforts, the need for the special commission was overturned and the first vote was set for May 13. However, the fight was only beginning. An elite squad of persons with disabilities, along with their representatives and activists, gathered in the House of Representatives to convince members that we wanted the CRPD to receive Constitution amendment treatment. That is, the CRPD should not have just a single vote like any other bill. Constitution amendment treatment would be historic. The representatives were resistant, but the presence and determination of each one of us would make it happen—we were the “lobbyists for good.” As I returned from Congress later that night, in the heat of the excitement, this is what I posted on Inclusive: “Dear all, I just came back from the historic first vote of the CRPD in the Deputy Chamber with my spirits high from a majority of 418 votes for approval, 11 abstentions and no vote against it. The pressure of the social movement was crucial to what we wanted. We had an expressive participation of persons with disabilities and their representatives in the House today. In the morning, the leaders’ meeting had approved that the Convention would be voted today, but it made no remarks about the 3/5 majority needed for two rounds of voting. We divided ourselves into groups and went to the parties’ leaders to explain that we wanted the Convention to be voted as an amendment to the Constitution or not be voted on today at all. The leader of minority party thought it was difficult to pass it in that way. PSDB [Brazilian Social Democratic Party] also challenged the process. We had to have a long talk with the leaders and also with each representative to ensure our desire for ratification. After many speeches about how the subject should be tackled, the President of the House, Arlindo Chinaglia, was firm and supported that the treaty would be equivalent to the Constitution, and that the text would be kept intact. That would constitute a new juridical element in Brazilian law. The vote finally took place. With 418 votes in favor, 11
abstentions and no vote against, the CRPD was approved on the first round of voting in the House of Representatives. We got what we wanted! And on a symbolic date as well: May 13, when we celebrate the Slavery Abolition anniversary in Brazil. It felt like the Convention represented the same freedom to Brazilians who live with disabilities.”
SECOND ROUND IN THE HOUSE OF REPRESENTATIVES After that, we raced against the clock to escape the legislative recess and the upcoming elections. We kept up the pressure and got the second round of voting completed in two weeks. We expected a quiet day, but it turned into the most tense vote we had ever had to face. Again I refer to my notes of the day: “With 353 votes in favor, none against and 4 abstentions, despite all odds, we succeeded in approving the CRPD last night in the second round. The qualified quorum (more than 3/5 of representatives) guarantees the Constitutional status. The document now goes to the Senate, where it also has to be approved twice by a 3/5 majority. The beginning of the day was filled with tension. The night before, we had heard that opposition would obstruct all votes as a political artifice. We started calling party leaders to accelerate CRPD’s vote to avoid obstruction. But the fight was fierce—the government wanted to approve an addendum for health and the opposition wanted to block it. Passage of the treaty seemed bleak. In a meeting with movement members at lunch time, the President of the House of Representatives made it clear to us that the situation was much more difficult than the previous round, and that he could not guarantee that the CRPD would get to a vote by the Senate. We were re-energized, however, with the presence of activists from other states at a preparatory meeting for our national conference the day before. Our lobby for the ratification of the CRPD, consisting of united persons with every kind of disability from governmental and non-governmental organizations, felt strong. The book The Convention on the Rights of People with Disabilities with Comments, launched by the Ministry of Human Rights early in the afternoon, was a powerful tool in the hands of activists as each one approached and talked to the representatives of their respective constituencies. Many times there were indications that the vote would not occur and that we should go home. I went to the Press Committee to distribute a press release I had prepared, documenting the Convention, and even the journalists said that there was no chance the CRPD would be voted on that day. But we were a persistent group of people. We didn’t move, and continued putting pressure ABILITY 25
Center: Zabel Maior, together with activists, meet with government officials to move the CRPD forward.
on congressmen and party leaders. Many of them made speeches at the tribune, arguing that the CRPD should be voted on that night. We started to feel that all of our efforts were finally being effective. Late that night, some congressmen brought us a proposal of a safe vote as the first item the following week, because they feared that, at that point, the quorum would not be high enough. We refused the offer. There was another proposal by the leader of the minority party, Zenaldo Coutinho, that a new session was open, to verify quorum. If there were more than 350 members—a good margin that would guarantee approval, they would vote it. Otherwise, we would leave it for the following week. We agreed to it. The congressman took the proposal to the stand and it was accepted. The President then started to call the House Representatives to achieve quorum at the voting room. Each member who showed up was applauded by a large group of CRPD supporters at the entrance of the voting room.
“Brazilians with disabilities get the first international treaty with Constitutional power in the country’s history. Unanimously, Senators approved the Convention on the Rights of Persons with Disabilities and its protocol, thus guaranteeing for the first time in Brazil’s history, Constitutional strengh to an international treaty. With 60 votes in favor on the first round and 56 on the second, on a thrilling and uncommon night, the CRPD was approved. This crowned the efforts of the movement of persons with disabilities, who left their differences, political preference and regionalisms aside, to fight for a common cause.
In an emotional and historical session, with 353 votes in favor, none against and 4 abstentions, the CRPD was approved. Many congressmen came to greet us and said this would never have been possible without our strong and determined presence and pressure. We managed, on a politically tense and complicated day, to gloriously achieve one more step in the CRPD ratification process.
Many steps contributed to the successful vote: There were high level actions such as President Lula’s recommendation to give Constitutional status to the Convention; meetings with House of Representatives President, Arlindo Chinaglia; Senate President, Garibaldi Alves, and leaders from all parties in both houses; emails, letters and phone calls to congressmen; and supportive signatures to the Sign Inclusion petition.
We take this opportunity to thank every representative who helped with the approval. We also thank those activists who could not be in Brasilia, but called and wrote to their representatives. Your help ensured the historic approval of the CRPD.
The successful process demonstrated how each action for the ratification was vital. The right to fully exercise each one’s citizenship is so much more powerful when we unite around a common goal.
LET THE SENATE COME In the Senate, the process was calmer. Our only enemy was time. We had to avoid the typical Brazilian festivities in June, when there is a recess at the Senate. A visit by Izabel Maior with the Senate President, Gabibaldi Alves, helped to accelerate the process. But the treaty had to go through two commissions—Human Rights and External Relations—before it was sent for a vote. The session at the Human Rights Commission was a public hearing with the participation of specialists on 26
disabilities, all of them persons with disabilities themselves, who told senators about the Convention. The Senate President was present and on the occasion, guaranteed that the treaty would be voted as quickly as possible. The following week, during the session at the External Relations Commission, Senator Eduardo Azeredo voted in favor of the document. On July 3, 2008, the Senate approved the Convention with two sessions on the same day. My notes published on Inclusive that day:
This victory makes me believe that the inclusion of persons with disabilities in all aspects of society, in equal conditions, is not only possible, it is attainable when we join forces and fight together. To all my fight companions: My warm and emotional regards. by Patricia Almeida agenciainclusive.wordpress.com assinoinclusao.org.br
Blair Webb volunteers on an ABILITY Build
n June 17, 2009, I had an extremely inspiring and motivating experience. The obvious expectation is that I would be referencing my high school graduation, which took place that afternoon; but that’s not the case. While the majority of my peers were busy primping for the pomp and circumstance to come, I spent my morning in a different part of town with ABILITY Corps, helping other volunteers from Habitat for Humanity of Greater Los Angeles to refurbish a house through their “Brush with Kindness” project. There was an endless amount of work to be done that day, ranging from roof repair to prep work for painting. The other ABILITY Corps volunteers with disabilities and I hammered away, repaired the roof, pressurewashed the walls and did whatever we could to lend a helping hand. Daily, hundreds or maybe thousands of volunteers are working on Habitat for Humanity builds across the nation, but I always thought it would be impossible for me to actually have that experience. As a person with cerebral palsy (CP), I am not afforded good hand coordination and, consequently, have never done much physical work. As a matter of fact, my muscles won’t allow me to cook, clean, speak clearly or even write on my own. But with the use of assistive technology, I am able to access my computer to submit this article. Regardless of my disability, I have always loved community service but have never found an agency where I could serve the less fortunate alongside my peers. I used to be involved with a social group for teenagers who used wheelchairs, that actually fed into the stereotype 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 provided with the opportunity to give to others, which would have been far more rewarding. With events like the graduation party on my mind, the
ABILITY Corps experience was like walking into an alternate dimension: where people with disabilities are valued as much as any other individuals. Being in a wheelchair, I have always been nervous about new environments. However, at the ABILITY Build, I immediately felt comfortable, because I was treated with nothing but respect. The crew leaders on site saw past my disability and focused on what I could do rather than what I could not. Although it took some creative maneuvering from a couple of ABILITY Corps team members, we were able to position the power washer tool in a way that made it possible for me to hold it between my legs and use my hands for support. The set-up worked and the team would not even let my aide help me as I prepped an entire wall to be painted. This felt empowering and freeing! One huge benefit of this phenomenal program is that it gives people with disabilities a chance to give back to the community, by bettering the lives of impoverished families. The ABILITY Corps is providing people in the disability community the opportunity to soar above society’s expectations by giving us the chance to actually participate in making the world a better place. I learned two invaluable lessons about myself that day. When I was able to independently manipulate a pressure washer, I proved that my body can do more than I thought. In addition, this experience taught me that any dream has the possibility of becoming a reality. I now know for certain that people with disabilities can do whatever they may desire if presented with the right opportunities and support. by Blair Webb
inding a job is not easy work. But as executive director of the Marriott Foundation for People with Disabilities, Tad Asbury has helped a countless number of high school students with physical, developmental and learning challenges find their way into the competitive working world and onto a path of personal achievement. With branches in seven major metropolitan areas, Marriott’s Bridges Program serves 1100 students every year, guiding them to strong working relationships with employers. ABILITY Magazine asks Asbury what makes the Bridges Program work. ABILITY: When did you join the Marriott Foundation? Asbury: I joined the organization in 2003, after a number of years in corporate philanthropy, but Marriott started serving its first youth with disabilities in 1990. So we’re now coming up on that magical 20th anniversary, and we’ve now served about 15,000 young people with disabilities, helping them make those first and critical moves out of school and into the world of work. These are kids with disabilities that range from mild learning disabilities all the way through significant
autism or mental retardation or visual or hearing impairment. The disability itself doesn’t matter, because we’re focused so much more on getting them into work, letting them know that there is a place for them in the world of work if we can find a connection for them and for the employer. ABILITY: So Marriott tapped you? Or did you reach out to them? Asbury: I was tapped to come in and help lead the organization, shaping it for the future. This job has been a great fit for me, personally. It’s very close to my house, so that was great. (laughs) In a city like Washington, DC, anything with a short commute is wonderful. And from Marriott International headquarters here in Bethesda, we manage the program in several other cities around the country. The Bridges program is run not just in Washington, DC, but also in Los Angeles, San Francisco and Oakland. We have offices out there, we have an office in Chicago, Dallas, Philadelphia, Atlanta, Washington, and Montgomery County as well.
ABILITY: If a student in high school had a learning disability, 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 learning disability who may have had a series of challenges that might even go beyond his disability, including other barriers to employment, difficult socioeconomic issues, and the like. College probably isn’t in the cards for you, in that case. Maybe in the long-term it is, but certainly not in the short-term. You’d be introduced to our program through a transition coordinator at your school, or through a teacher, or maybe just through some of the workshops that we run as we partner with your school. If you have a genuine desire to go to work, we’re going to help you opt into the program as much as we can. We begin to reach out to these students through the school system and then, at some point, maybe even through our office. Then the students would come in and we would begin to do some diagnostic work with them, assessing the things they like to do, the places they would like to go. They dream, like everybody else. We are all dreamers, especially at that age, and our goal at Marriott is to try to help blend those dreams with some realities of the world of work, and to connect those realities to employment that suits the student’s interests. After a series of assessments, our frontline staff–our “employer representatives”–wear a lot of hats. They function as caseworkers with caseloads of young people, but they also act as job developers. Each of those staff members is in touch with employers who very much need entry-level workers to fill positions. So we’ll at some point get our students job-ready through development of their interviewing skills and resume-building skills, if indeed they need that sort of support. Many or most of them probably do. Transportation is critical, too, especially in a city like Los Angeles, as they need to be able to get to and from their jobs. So we’ll put them in our automobiles and get them to those interviews and start to walk them through a place where ultimately, we hope, they would get hired into a competitive position with a local employer. And then, over the course of months in a given position, they connect with us on a weekly basis, then on a monthly basis and then on a quarterly basis. At some point, of course, we exit them out of Bridges if they
Tad Asbury, executive director of the Marriott Foundation for People with Disabilities
have demonstrated an ability to maintain employment, or if they have demonstrated abilities to be out on their own. That’s how that process works. ABILITY: So the important thing is leading them across the bridge to the other side. Asbury: Yeah, that’s the hope with all of them. Of course, there’s a myriad of challenges in working with this population. But the opportunities are so great, and there are so many young people who are in need of these services. There are about a quarter of a million young people leaving high school every year, and a year after they leave high school, about half of them are still either unemployed or woefully underemployed. These statistics are national in nature, and I would venture to say they’re even more critical in inner cities around the country, in the cities where we serve these youth, and in other cities as well. So there are many young people for us to serve, and there are still many employers, even in today’s time of economic trial. There are still positions that are open as people retire, as people leave jobs. There are openings, and we’re still, all things considered, pretty successful in getting young people into jobs and then helping them stay in these jobs. I think we’ve found an awful lot of success in going right into the community, into the employer who has a very immediate need for someone to come in at an entry-level position. We hire these students right into the job, knowing that training can happen right there in the workplace between the employer and the employee. That’s always been the focus of the Bridging program: to center in on those competitive jobs at a competitive wage. ABILITY: Have you been involved with AmeriCorps? Asbury: I do know we have had periods of working with ABILITY 31
young people coming out of the AmeriCorps programs. I know in San Francisco there were a few. And we’ll find them jobs, maybe not even in the field that they were focusing in on with their AmeriCorps training, but largely these young people are just coming to us and saying that they need a job. As much as they might like to do volunteer work in the community, it’s still a matter of paying bills. When you’ve got a 17-, 18-, 19-year-old kid who, even at minimum wage may be the only breadwinner in a family with a mom, or possibly other kids to take care of, a lot of these kids find themselves taking on considerable responsibility in their family network. So for them, there’s a bottom line of having a paycheck. ABILITY: You say there were some people in the San Francisco area who were coming back into the program that had already experienced some volunteer efforts? Asbury: Yes, or who were involved in training programs in San Francisco. But that’s more of a rare case, I would say, in the population that we’re serving. We don’t see a lot of them coming through volunteer programs, initially. ABILITY: Do you work with other nonprofit or for-profit entities that help employ people with disabilities? Organizations like the US Business Leadership Network (USBLN)? Asbury: Funny you mention them. I just had lunch yesterday with their chairman, John Kemp. We do have some connections with them. Still, I think we find the most effective connection with the business community is to go right to the places of employment, right up to the managers who are hiring. When it comes to getting kids into positions, it’s about establishing their relationship with the hiring manager and finding someone to satisfy that manager’s immediate employment needs. But yes, our organization is involved with groups such as the National Youth Employment Coalition, and we have spoken before at USBLN conferences. I know their next meeting is in September, here in Washington, DC. We’re really thinking of how, as an organization, we can continue to grow a program. We’ve seen 20 years of remarkable success, really, in helping so many young people make the transition to the world of work, and in helping 1,000 kids a year. However, we’re still asking how we can reach out and get others to use this model of making these proper employment matches that satisfy both the young person and the employer. Right now, there’s some training going on in New Orleans, where we do not have a Bridges program, but where we are opening what we’re calling an “affiliated program.” Essentially, we’re training recovery school district teachers and transition coordinators, to act as Bridges’ employer representatives, in much the same way that we might train coordinators in our offices in LA or Oakland and San Francisco. But at these affiliated programs, we 32
will not have a full-blown Bridges program with a director and the like, so the recovery school district staff members just stay on in their positions while delivering the Bridges model to youth and to the employers of the city of New Orleans. This approach bypasses the significant start-up costs that it takes to get a program going in a new city. So we’re excited about those possibilities, because we’re able to develop these connections with larger groups and to talk about some of the ways we can grow the program a little more. ABILITY: What was John Kemp’s idea for expansion? Asbury: He was very taken with what we’re doing with the New Orleans school system. I was, in a sense, getting an endorsement from him. He thought that what we were doing was a very, good way to go for the future. And we talked about some other organizations that we may want to reach out to. The program is funded in part by the J. Willard and Alice S. Marriott Family Foundation, and not by the Marriott Corporation at all. It gets seed money from the family foundation, and then I go out and raise more resources. For every dollar I get from the foundation, I raise an additional two dollars in government contracts. ABILITY: Do you have statistics for the job retention rates of your program? Asbury: Essentially, we aim at a goal that our front-line employer representatives are going to place 16 young people into employment. We would fully expect that at least 12 of them stay at least 90 days on the job, and then we’ll monitor their results over 180 days or even 365 days. But of those 12 that stay on the job for at least 90 days, we’ll also see a series of advancements happen, including longevity on the job, increases in responsibility, additional hours on the job, and additional increases in wage. So we’ve got our own data that we are constantly monitoring, and we deliver those results back to the organizations that we contract with, like the Department of Rehabilitation. ABILITY: When you help develop these students’ resumes, do you also have them post them online? Asbury: Probably not, if only because many of these young people may not have access to the web where they live or in their community. We give them access in our offices. I think we’re more likely to create a resume for them and keep it in our system so, should they need it again, they can get it. It’s not uncommon to have someone we served three or four years ago lose a job and not have a copy of their resume and simply come in and ask to have a copy. But we find that, when it comes to this interaction of technology and the young people we serve, there’s a considerable challenge relative to these online job applications and questionnaires. If you apply for a job with Safeway or Target, you’re expected to be able to use a kiosk or go online and answer some
questions and then fill out an online job application. The young people we serve often find that particularly challenging 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 more challenged to get past that screening tool. We see an awful lot of that. We work pretty closely with the young people to navigate them through some of those systems. One of the inspirations behind Bridges, when it was formed 20 years ago, came from asking employers, “If you had to hire someone with a disability tomorrow, where would you go?” And they had no answer. And today, because of the Internet, there’s a whole lot more resources for employers to go out and find employees, but still, some people may not know how to go about doing that. Over the years, we’ve worked with more than 3,300 employers. It’s a great number, but there’s still a whole lot more employers to tell about the incredible advantages of hiring people with disabilities. It’s not uncommon that a kid will get hired through Bridges and the employer will simply come back when they have openings and say, “Who else do you have? I need more people for entry-level positions.” I was talking to my director in Dallas just yesterday, and learned that Baylor University has hired 17 Bridges kids this year alone. Why? Because the employer knows what he’s getting. He’s getting pre-screened young people who are ready to go to work. And if they have any issues relative to the pairing of this kid with Baylor University, then Bridges is there to intervene and to help clarify the issue. If Baylor needs to fire a young person, we’ll say, “Go ahead and fire them, because the relationship with you, Baylor University and Aramark, is far more critical than having someone who isn’t the right fit for the job. Then we’ll find the young person a different job and we’ll someone else who’s a better fit for the university.” It’s great to make those connections with employers, and once they understand this resource, they really do embrace the possibilities. You see the advantages and work from there. ABILITY: Doesn’t Richard Marriott say, “It’s just not the right thing to do, it’s good business.” Asbury: Yes. He’s a great guy. He’s the chairman of our board, and I think his comment is something to the
Cal Ripken and Richard Marriott during a Bridges Award gala
nature of, “It’s not just a philanthropic charitable effort, it’s a good business decision.” And that’s ultimately what plays well for an employer. The employer wants to help the community. He wants to demonstrate his involvement in the community. But the bottom line at the end of the day is the success at making a profit, or these days, of at least breaking even. And you’re going to give employers a proposition that’s going to help them do that. You’re going to want them to hire young people because it is a good business decision. So from that position, they can hire even more people. And that certainly is a philosophy that Marriott holds itself up to and instilled in this program since the beginning. I think we’ve seen a shift with the Bridges program, certainly since ABILITY Magazine last interviewed Mr. Marriott. Originally, the notion was to get young people into jobs or even into internships that might turn into jobs, get them up through about 90 days, and then close out the case and go pick up another caseload of kids. Today, all we focus on is long-term intervention. So we have, as a centerpiece to our efforts, something we call a career development plan. We develop a long-term plan for each young person–and a lot of these kids haven’t thought long-term about their own futures, if at all, so it’s a great start for them. That career development plan is something we come back to, and the intervention now is not 90 days, but up to 24 months, depending on need. That’s where there’s certainly been a shift in what we’ve done. ABILITY: It sounds like you’ve expanded your reach. Asbury: If I look at the populations of kids that we serve, it would, I think, still continue to mirror the general census population. 60% of them have learning disabilities and another usually 12% to 15% have mental retardation or some sort of other cognitive challenge or developmental delay. Another 12% to 15% have emotional or behavioral disabilities, and the remainder pick up other disabilities, whether it be blindness, visual impairments or hearing impairments and the like. But we find ourselves really focusing more on what a kid can do than what a kid can’t do. marriottfoundationbridges.org ABILITY 33
Jerry’s rehab in Israel
uring a hike in the hills of Israel, a chance encounter with a landmine left Jerry White with a new view on life. White placed his focus not on what had been taken from him, but on how his personal experience and passion could make the world safer for others. In 1997 he co-founded The Landmine Survivors Network with fellow landmine survivor Ken Rutherford. Working closely with such prominent figures as Princess Diana of Wales, King Hussein and Queen Noor of Jordan, White became a leader in the International Campaign to Ban Landmines, and was corecipient of the 1997 Nobel Prize for Peace. Today, White leads the charge in addressing the repercussions of violence and armed conflict across the globe. ABILITY Magazine’s Chet Cooper sat down with White for an in-depth look at his story.
Cooper: I have to ask—why were you hiking in Israel? White: (laughs) Like a tourist? I was the first non-Jew to graduate with a degree in Judaic studies and Jewish history from Brown University. My advisor said, “Jerry, God doesn’t speak Greek or Latin in heaven. He speaks Hebrew. It’s time for you to head over to Jerusalem and learn the language.” So I went over there with my backpack and Hebrew-English dictionary, not knowing anything more than “shekel” and “shalom,” wanting to walk in the footsteps of the prophets, and study Biblical archaeology, foreign policy of Israel, Hebrew, and a little bit of Arabic as well. Cooper: What prompted you to set out that way? What’s your own religious background?
White: Irish-Catholic. I grew up outside of Boston in a town with no synagogues. I think I had my first bagel when I was 17 years old. My sister had come back from college with this chewy doughnut no one had ever had. Cooper: Those bagels will get you. White: (laughs) Right! Anyway, I grew up in a preppy, homogeneous, small town on the coast of Massachusetts. But when I went to Brown, all the smart kids were drinking coffee, reading the New York Times, and taking Judaic studies classes. I followed some of my friends. No one had really told me Jesus was Jewish, so the baseline of my Christian faith felt shaky, like, ‘What else don’t I know?’ I wanted to understand the Judaic context of earliest Christianity to backfill my ignorance, and Brown happened to have some really great professors on this front. Being a Religious Studies major, I narrowed in on the relationship between Judaism and Christianity, and that ultimately led me to the land where it all began. Cooper: Israel? White: So I studied for about one semester, and then there was a Passover break in the spring of 1984. A couple of friends and I went on a round of touring and hiking in the north, which was heavily forested with waterfalls and nice nature hikes. But we sort of wandered off the beaten track. That was our flaw, our fatal step–we had turned left when everyone else had turned right. We had entered through the unmarked back door of a minefield. Cooper: No pun intended with the “fatal step?” White: (laughs) Luckily, it wasn’t fatal. I went back there [to the scene] in March of this year, for the first time in 25 years. I used the media, the profile of my story and my return to this personal ground zero to raise awareness among Israelis about the nature of the landmine problem in their backyard, which they don’t really know much about. You shock most Israelis when you tell them, “There are nearly 300,000 mines buried throughout your country, and you have hundreds of nonoperational minefields.” In March alone, when I was there, there were three new landmine accidents. Cooper: These mines are from the Israeli government? White: Yes, some left over from Syrians. A lot of the mines in the Golan are mostly part of Soviet-supplied, Syrian-laid minefields. The specific camping area, where I had turned left, was a Syrian stronghold from the ’60s. There are also some Jordanian-laid minefieldsoutside outside Jerusalem, from when Jordan controlled all that territory. So it’s a bit of a hodgepodge, depending on which area of the country you’re talking about. Most Israelis understand that there are minefields in the Golan, and many believe that they need mines along the
borders because they don’t have peace and it helps prevent terrorism. That would be the generic belief of most Israelis, but many don’t understand the extent of the problem–minefields have not been cleaned up and can be. So that’s why we were there, to raise awareness and get Israel to start cleaning up this military litter from all of these wars. Cooper: Are these fields clearly signed? Are there fences that say: ‘Danger-Keep Out’ or ‘Minefield?’ White: When I was injured in 1984, no one wanted to believe that these areas weren’t properly signed and fenced. There was a tendency to blame the victim. I would say, “If I had known it was a minefield and I had seen the sign or fence, I don’t think I would have gone camping there.” But that was 1984. It wasn’t until the mid-’90s that the Israelis did a survey of all their minefields and admitted, in a Comptroller General report from the government of Israel, that there were, in fact, a number of minefields that were not properly fenced off or signed. And then it took until 2004 for minefield maps to be published illustrating where the minefields are throughout the country. The maps, however, were only published in Hebrew, not in English or Arabic or Russian. So there’s still work to be done. However, even when you go up and visit some of these minefields, signs fall off or tourists take them. Barbed wire falls down, cattle trample them, and there are still instances in which people, sometimes children, are at risk while retrieving their soccer ball. For some Druze families, weather floods the minefields in winter and the mines come up right into the doorsteps of their houses. So even the minefields don’t stay put, and signs and fences don’t stay put. Therefore, the only real solution to the problem is cleaning up the areas and de-mining. All of this led me, in an unlucky time, to step on a landmine. In the book, I describe my story of surviving, of having my two friends pick me up and carry me out, and then of spending six months in Israel. If you’re going to step on a landmine, I recommend that you do it in Israel, because it has the best trauma care in the world. I was in a hospital in my own room, with about four guys my age. Sadly, it was normal to have lost arms or legs or eyes because of explosions in war. At that time, in the ’80s, many guys were coming back from the war in Lebanon. Israel hospitals have an advanced technique of interdisciplinary trauma care, as well as the intentional use of peer-support, visitation, and mentoring by other amputees. That’s where I first learned of what, 20 years later, would become our hallmark of work around the world: pioneering the use of peer-support methodologies to improve the mental and physical health of the injured and of people with disabilities. Cooper: At what stage did this prompt you to create the network? ABILITY 35
Jerry with Survivor Band
White: After I returned home and resumed my studies at Brown, I worked on arms control and the nonproliferation issue for about 10 years. I didn’t even think about my leg. I got a new fake leg and then I got married and had four kids. It really wasn’t until 10 years after my accident that the landmine issue became a global issue. I jumped at the opportunity to get involved. When I met co-founder, Ken Rutherford, he said, “Jerry, you’re tracking the wrong weapon of mass destruction. Landmines have killed more people than nuclear, chemical, and biological weapons combined. With your professional experience with arms control and national security issues, and with your personal experience losing a leg to a landmine in Israel, why don’t you get involved? There’s this new campaign that’s just starting.” This was in the mid-’90s. In fact, the UN was having its first conference on landmines in Vienna in September of 1995. So I was just at a propitious moment to join this nascent campaign. And that’s when the light bulb went on and we started Landmine Survivors Network. Born during the International Campaign to Ban Landmines, which won the Nobel Prize in 1997, it’s the first international organization created by and for landmine survivors. We were the only survivor group, and we also started to work with Princess Diana. All of this gave us a lot of attention, of course. Cooper: How did that connection occur? White: Princess Diana had gone to Angola and had been awakened to the problem of landmines on her trip there. When she said how awful landmines were, sort of off the cuff, really, she was accused by the British government of not being a proper princess. They thought she should stick to humanitarian issues and not talk about security issues that she doesn’t know anything about. So she began looking for a humanitarian platform to address 36
the issue of landmines. The first time she gave her public speech on landmines was at the Royal Geographical Society in London, and we were at her side, planning the conference and the platform for her. Later on, we did a lot of work with her and brought her into Bosnia. She kept asking for help, “What should we do next?” Fundamentally, I think Diana was a person of compassion, so she wanted to help people. She single-handedly translated the issue in people’s minds from a security issue to a humanitarian issue. This was about people getting blown up. It wasn’t just about the weapons. Cooper: Did Princess Diana come to you? White: We were told by the Mines Advisory Group (MAG) that Diana wanted to meet us and wanted to have survivors involved. We were the international survivor group, so MAG said, “Why don’t you get in touch with Kensington Palace?” The de-miners brokered the introduction, and I started to brief Diana on our work with survivors around the world. She asked me to plan, in secret, her first trip to Bosnia. That was in 1997. Cooper: Did you go to England to meet, or was this mostly over the phone? White: Mostly by phone. We went over to Kensington Palace on a couple of occasions to brief her and also met with her in the US during an event. In Bosnia we spent three days together, non-stop. Cooper: How did you pull that off? White: We didn’t tell anyone about it. Cooper: You have visas and diplomatic issues to get into another country? White: I knew on her end that the Foreign Ministry of
Her Majesty Queen Noor in Cambodia
Defense would have to handle her permission to go, and that her travel on a private plane was to be arranged. I was just supposed to go pick her up and travel with her back to Sarajevo. Meanwhile, we had her bodyguards. But even the British ambassador to Sarajevo was not 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 call her own shots out of Kensington Palace, not having to always do what the establishment wanted or the government wanted or the family wanted. So she was sort of cutting out on her own. I wouldn’t tell anyone who was coming. People would guess. They thought it was Bianca Jagger or Hillary Clinton or some other celeb. I said, “I can’t tell you, but I’m trying to arrange a VIP visit, and I was wondering if I could have your help on the following days.” So we engaged the help of friends who could supply us, but I told them I couldn’t say who was arriving, only that it would be important and that they would be glad they were involved. It’s amazing how far we got by doing that. The whole thing was also done pretty tightly and quickly, so in that July and the run-up to August, there wasn’t much time for leaks. Cooper: What was the experience of going there? White: I was watching a person with a gift in action, which was very fun. I realized it wasn’t just about Diana the celebrity, it was about a person who fundamentally cared about people who were hurting, someone who had a gift of compassion and healing. Seeing her in action in any particular room, or in a home where there would be people with stumps and raw wounds or losses, Diana was always very appropriate and loving. This was a woman who had just lost her husband only a month before. She’d listen as people poured out their hearts to her. And she took some of their pain out of that room each time, again and again and again. So for me, it was
a privilege to watch and learn from the master, someone who just fundamentally understood people in pain and how to be with them. Cooper: Did these people know who she was? White: In Bosnia, most did. There were a couple who were like, “Who’s that?” during the events. But at the time of the visit, most people in Bosnia were aware of her. Sometimes it was just, “She’s a princess from the UK,” or some other country. I guess they hadn’t read a lot of People magazine. Cooper: In the cases of those people who didn’t know who she was, did you still see the reaction to her compassion as being as powerful? White: Yes. As Diana put it, and I write about it a little bit in the book, “What’s most important sometimes is to care enough to show up.” In her case, that meant coming down from on high. It’s a transformative gift to care enough to show up and sit with people in their pain and listen to them. And then if you touch them and show that you care, that is powerful. In our case, we were there to help and to follow up. Diana had a charismatic gift. Until I met her and experienced her in person, I would not have thought that. I know she was good for the cause. At first I thought she’d be good for the cause simply because she was so famous and because she’d be putting the spotlight on the issue of landmines and the need to ban them. I thought, “Brilliant, wonderful, play that role.” It would be a media role. But then it became clear to me, going in, that this was more than that. It became a humanitarian, compassion-based role, and that went much deeper than simply being a spokesperson. 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 people who didn’t know who she was? White: That’s the gift that we get in princes and paupers all around the world who are a little bit hurt. Diana had been hurt in life. To reach out and to listen to people who were also hurt in life was her way of giving back. That’s what peer support is about. It really works when someone who has been scarred reaches out to someone who has more recently been scarred. We do this all around the world. Sometimes that’s all you really need. It just so happened that she was a beautiful blonde princess from another country, but she had the gift. Because she herself identified as a survivor, that was the key. Cooper: What are you referring to when you characterize her as a survivor? White: Whether it be from a failed marriage or from her troubled childhood, from feeling lonely or from reaching out to people…All of those issues that became so public during her broken marriage were instrumental to help her emerge as a highly sensitive, empathetic person. She showed a “get it” factor, without all of the psychobabble of trauma and recovery. She understood that a crisis, a trauma, is a before-and-after experience, and that it can come in unexpected ways. Life is a minefield, and she just viscerally understood that. Diana showed resilience. She also joked about things. Humor is one of the leading signs of resilience, one of the leading hallmarks of someone who will overcome. She had a wicked sense of humor to keep her head above water, including an ability to poke fun at herself and at this idea of trauma. Cooper: It must have been frustrating to see everything surrounding her death and the media hounding. 38
White: We were just starting in the movement, and we were losing a spokesperson, a patron, and someone who’d become a friend. At her funeral, needless to say, I couldn’t stop crying over the loss of someone very special to the world, but also someone who had touched my life personally. Cooper: Tell me about the Survivor Corps. White: The way to work out part of our grief over Diana’s passing was to build a legacy of survivorship. For 10 years we built landmine survivor networks, primarily using this peer-support model so that mine victims could get legs, jobs, and get on with their lives. We started in Bosnia, where we had taken Diana, and we then expanded to work with Her Majesty Queen Noor of Jordan. We set up a country network there, and then in Ethiopia, Mozambique, El Salvador and Vietnam. We grew, doing more than 100,000 peer visits to homes and hospitals. We worked with each individual we met through our network to develop what we call individual recovery action plans (IRAPs). Primarily, these are the keys to recovery and self-motivation. The survivors or amputees we met would set out their own personal objectives with a peer, their mentor, and would then set objectives for their health. These objectives might be to get a better prosthetic limb or to participate in disability sports. The survivors would set up objectives for their economic livelihood, knowing that a fake leg doesn’t put food on the table. Cooper: And they’re also just not tasty. White: Yeah. They do break your teeth. (laughs) We also focused on social empowerment. In other words, how do you get back into the game? How do you give back? There was this obligation of community ser-
Jerry in Vietnam
vice, which was also an ethic of the organization, that if you’re going to receive, you must also give. You must pay it forward in your community. So that made us a little bit different. We weren’t just about charitable things, like, “Hi, you need a fake leg? Here’s the gum ball.” Our more specific issue was, “How do you prioritize your recovery?” Instead of having an individual pay us back, we’d ask them to pay it forward. Let’s say we helped someone get greenhouse coverage and a startup kit for a business in Bosnia. We’d then ask that every month they take a batch of fresh tomatoes and greens to the local orphanage. So we found survivors finding great joy and motivation in the give-back, being both a beneficiary and a benefactor. That’s the give-back piece that I think is the “special sauce” of recovery, but which is also crucial to our recovery programs around the world. It’s not solely about you and your survival. It’s about your survivorship and your citizenship and your contribution to the community. Cooper: I love the way that’s been established. Those give-back components are so needed, as you well know. White: One of my frustrations with many disability groups around the world is that sometimes they risk falling into a sense of entitlement. Additionally, you might find a sort of disability quote-unquote “mafia,” which seems to control many of the disability groups around the world. Again, impressive, scrappy survivor types, but are they giving back? That’s the question. The posture of being victimized, of being entitled, is sort of insatiable. I understand it, because many groups, when there are very few resources, struggle for their very survival, and perhaps are not best at providing empowering services and generational training and
Princess Diana and Jerry White in Herzegovina
capacity-building to others besides themselves. Everywhere you go, you run into great groups and not-sogreat groups. I think because disability groups have traditionally been so underfunded and marginalized, both culturally and financially, there isn’t always a strong tendency towards organizational health. Cooper: I think that, due to the paternal nature of people, sometimes the organizations that are quote “trying to benefit their clients” limit the potential with restrictions of what can and can’t be done, and their clients miss out on the benefits of helping others. We see it in the States all the time as we try to educate non-profit organizations on internal attitudinal changes. White: Exactly. When we went around the world and we thought we were helping mine victims, we realized that in any war-affected country where we showed up, we really had to work with the community at large, including the disability groups. You can’t sustain playing favorites with one type of disability when the whole community is so desperately in need. That was one thing we observed that led to our next campaign for a barrier-free world, not just for a mine-free world. It also seemed that the vocabulary of disability was largely the fruit of centuries of this patronizing, charitable, medical model or “sick model” approach. So we knew that the vocabulary had to change, that the law and policy structure had to change. At the very least, even though we knew it wouldn’t spell the end of the problem, we had to have the disability rights crowd take their seats at the human rights table. That meant two things had to happen that were a bit shocking to me. The disability rights crowd needed a human rights vocabulary or framework. At best, they had perhaps a social framework, a social model, ABILITY 39
which is part-way there, but a rights-based vocabulary was missing. And on the other side, you had a rather developed, global human rights industry which had no disability sensitization or vocabulary. So, as we moved towards creating the international disability caucus that ultimately would drive this convention in an inclusive, participatory way, both crowds needed some sort of introduction to the other and to each others’ vocabulary. They also needed to know how to function as a campaign and as a movement while we brought our knowledge from the landmine ban movement into this disability movement. So it was about reaching across sectors to get involved. It was about including the people with all their limbs who are not in wheelchairs. It was about fighting for the rights of 650 million people, but without losing sight that this is about any and all of us who are “temporarily able-bodied,” as they say. We all come in and out of abilities, depending on context, environment and health. This evolved from a mine-free campaign into something bigger. We must promote a barrier-free campaign, which is colloquial for the disability rights convention work we helped to lead. When we asked ourselves, as survivors, what this was really about, it wasn’t about fake legs or wheelchair ramps. It was about how not to live as a victim. So this last piece in our conversion, in our transformation into Survivor Corps, was done in concert with this book to express a philosophy of how to live victim-free and therefore help break cycles of victimization and violence in the world. That’s where we are today. Ultimately our raison d’être, the real heartbeat of this network, was this aspiration for a global survivor movement that would break down barriers and empower individuals to not only enjoy their rights, but to enjoy their responsibilities living their lives. So there we have it. Survivor Corps is born. We’re one year old. Cooper: And you only look eight months—you look very good for your age. White: (laughs) During the exciting days of the Nobel Peace Prize and Princess Diana and Queen Noor, someone said to me, “Jerry, I know this is all heady stuff, and congratulations. However, you can only be your age. And for an organization to grow, to get on with this work, it must move from phase A to B to C to D, like our children. It’s organic, and if you try to take a shortcut, if you try to be D when you’re really B, you end up having to go back to B to grow and mature.” It was such a simple thing that someone said, and it stuck in my head. I responded, “No, we evolved over the last 12 40
years. We are our age.” I joke. I don’t want to sound condescending, but we sort of graduated from Landmine High School, where we were trained, and enrolled in Survivor University. Right now as an organization, we’re a freshman. We finished our freshman year of taking a whole range of new classes in survivorship, from gender-based violence to genocide, not just the landmine piece that we started with. It’s been quite a challenging and exciting year, as we are now where I think we should be, majoring in issues of survivorship in conflict-affected countries around the world. We’re bringing the leadership of survivors, those who are most scarred by conflict, into issues of conflict resolution and community rebuilding. I’m 46, so I’m getting old and gray and losing my hair in the process. But it’s fun to say I’m a sophomore at Survivor University this year. Cooper: You’re still a student. White: There’s a framing and rethinking of things a about person’s abilities. In northern Uganda, for example, where we’re working on a newer campaign, and in Rwanda as well, you see millions of people displaced, and so many people with severe disabilities due to violence. They might tell us, “We’d like to make health centers accessible to persons with disabilities.” Because people can’t even access health care, let alone microenterprise. They still have all these barriers to participation: everyone thinks it’s too expensive, someone will get hurt or it’s better to keep them in institutions. So you find methods that integrate the community and are good for everyone. Just as you’re expressing with ABILITY Awareness or the ABILITY Corps idea. Last year we started to look at how we were doing on some of the accessibility stuff for some health centers and government buildings, and we’d sometimes discover a funny blooper, like, “Oh, isn’t that something? You can use this ramp to get in but not to get out.” And then you’d go inside and the next door would not quite be wide enough for someone in a wheelchair. So little by little, you’re retrofitting at some level and you’re trying to get them to do universal design. You realize it’s both an education and also an attempt to anticipate but not intimidate. Our strength is probably on the front-loading capacity and the training, the technical assistance, particularly on the peer-support side. As I described earlier, Survivor Corps’ two softwares were among the best. One is peer support methodology and training, and the second is advocacy leadership, whether it be the Landmine Campaign or the accessibility caucus. We’re really trying to get hundreds of these vet-related groups together to get a total national roadmap of how we deal with community reintegration for our vets, whether they have disabilities or not.
Jerry in Ethiopia
Coalition work is like God’s work, or volunteer work, because it’s not controlled. I’m not staffing it. It’s more like coalition mobilization, where we show the leadership, the brain power and the ability to facilitate and coordinate well in serving up substance, and we don’t have to pay for the change. We can actually do something that will probably have billions of dollars of effect over the coming years. Cooper: Do you know Dr. Liberman’s work on psychosocial rehabilitation?
pushing until it’s almost legally obligated or contracted. So I’m trying to think about how to keep checkmating the ideas, so that service will integrate vets coming back as a rule, not as an exception. This allows people with disabilities not just to live off of their disability compensation or military compensation, but really to start to live again. I just got back from two and a half weeks abroad in the Middle East, so I’m a little behind. But I think we’re making in-roads and progress, because every time we meet with anyone here, from DOD to VA 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 community and the mental well-being of the individual who is doing the volunteering. White: We’ve met with the Corporation [Corporation for National Community Service] and with some of their leadership. Every day there’s something going on to try to get more accomplished. Who’s going to say to your face, “We object to having people with disabilities integrated into volunteerism. We object to disability being on the next conference plenary”? No one says that. But you have to keep at it, and in it. So we started with the definition of “give-back.” This leads back to the three guys who work with me. What would community service look like for vets here and abroad, and what would Vet Corps look like as they integrate the concepts? It’s essential, the service piece. It’s proven by the research, as well as by our experience to help in recovery. It’s harder to do things, sometimes, when no one clearly objects to it. Sometimes it’s easier to fight a battle when you have an enemy. When you have people who are well-meaning and accepting, you just have to keep
White: No, we have an Israeli coordinator and we’re hiring a Palestinian coordinator. We’ve had an office in Jordan for about 10 years, trying to find these community-based projects where adversaries and enemies can work together. We’re finding that making a health center accessible is the type of project where people can say, “We have a mutual interest. It’s a good thing. It’s relatively non-political.” Once you get people working together on something, it ends up being about reconciling and building social capital for these former enemies. Jordan was made easier because we got Queen Noor, and Diana became an international patron. But it still meant there was registration and the work and the hiring. It was sort of facilitated somewhat, but not too much. Mostly, it’s just old-fashioned work, and it takes you 10 trips over there and not just one. I feel like there are 10 years of my life I don’t even remember, when my kids were young and I was birthing this work and setting up these networks. I just don’t even know how I was able to breathe. Cooper: You’ve got a new book? ABILITY 41
White: The paperback just came out in May, entitled Getting Up When Life Knocks You Down. It originally came out in hardback as I Will Not Be Broken, so it’s basically the same book, but launched fresh as a paperback squarely in the self-helpful genre. So now when someone reaches for it, they know exactly what they’re getting, as opposed to the other title. The book is really about how to overcome crises by sharing the wisdom of survivors all around the world. Cooper: Your organization has really grown. White: And then you wonder why you have such gray hair and so little of it left. So there is the passion piece, but it’s also about picking your battles. Sometimes it’s just a question of research mobilization. I find that, in the disability community, people act like we are a rich NGO. Resource mobilization is not something that happens overnight. It’s not something you get lucky at. It’s also seeding the garden with five million relationship meetings that should bloom something like a rosebush somewhere eventually. But it’s also huge, hard work. It’s not like I go to a cocktail party, meet a rich person and they write a check. The more people succeed, the more everyone succeeds. Don’t be tentative on resources, be additive. Part of the challenge is that you have to be able to sustain that resource mobilization, which means that you’ve got to put in a hell of a lot of unfunded time, and the outcome is no accident. I think campaigning has to be fun, too, not just one big slog. So someone’s paying for the ice cream or the sandwiches. Sometimes we never get a thank you. There’s no silver spoon born into any of these groups. Believe it or not, we were never popular, and there was only George Soros who was sort of interested. Eventually, we got better international support. But when it gets heady with the Nobel Prize and Princess Diana, people say, “You must be swimming in the dough.” And respond, “Show me.” Disability and doorknobs—it’s not exactly a sexy thing. Cooper: Oh, come on! White: Sometimes it is. (laughs) Cooper: You claim you’ve never been lucky. But when you took that hike— White: (laughs) I actually do think that was lucky. Whenever I talk to my kids’ high school classes, it’s interesting how young people want to draw a very direct line. “You made lemonade out of lemons, therefore the lemons were good. It’s good that you were injured by a landmine, because look what it led to.” I say, “Not so fast. I will never give good press to the landmines or to wars that leave military litter that maims innocent civilians for decades to come.” 42
Cooper: How do you feel about your work with the UN and the human rights convention? White: I’m glad that there is a high, comprehensive international standard now set for disability rights as an aspect of human rights. I’m proud of that. That’s a legacy, and it will take a hundred years to play out. But I’m disappointed that the disability community, in its contraction and its self-obsession, forgets that this is really about six billion people. Every time they say “There’s nothing about us without us,” I add, “There’s no success without the rest.” I understand the playing field is not level yet, but let’s pretend it is, because we’ll make more progress wheeling down the road. “Wake up, guys, it’s about all of us. This is the best human rights convention for all survivors, for all people breathing, for all grandparents who are aging, for all of us who have mixed ability.” Cooper: Are you doing anything in the microfinance arena? White: We do what we call linking and referring abroad. That means setting up these empowerment peer-support networks and working with survivor groups. Obviously, one of the big issues in developing countries is not just health, but also the livelihood. We say, “Okay, what’s your objective there? How do you get to the microfinance? How do you qualify for a loan?” It might be that we’ve done some granting to get them to a certain level, working with vocational training institutes in Jordan, for example, to make these resources accessible. So we dabble in the economic space and then we end up doing what we call economic social work. But at the end of the day, we aren’t specialists in microfinance. Cooper: Do you look in the mirror and ask, “How did I get here?” White: I actually do enjoy holding up mirrors to myself and to others. It’s sort of funny, and I’m trying to learn. I can tell my children, “This is this, this is that.” It doesn’t matter. They have to come to it themselves. And yeah, you could say to me, “On the contrary, you became all obsessed with landmines around the world. No wonder you forgot 10 years of your life, because you were fighting this demon that bit you and you’re mad at it.” But it’s about channeling passion and anger in a way that allows outsiders to hold up a mirror. Maybe this was a delayed passionate response that was part compulsion, part healthy in getting it out of my system, and part, who knows? I know you can’t really over-psychoanalyze where people are. You just try to have a “net positive.” This is what Princess Diana showed and taught me. Here was a woman who was rather complex. I’m not making a saint out of her. She was insecure and complicated, she did this and that and she did sleep with married men. But
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 counseling 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 disabilities. 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
f you haven’t seen AMC’s Breaking Bad, you should. There is a reason it has garnered 5 Emmy nominations this year alone. The 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 normal 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 bitterly 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 no-holds-barred world of Walt White, the end justifies the extreme. ABILITY Magazine’s Liz Angeles and Chet Cooper caught up to the youngest actor, RJ Mitte, of the hit show, along with his manager, Addison Witt, at an acting studio in Sherman Oaks, CA. Angeles: So, RJ, how do you like working on the hit show, Breaking Bad? Mitte: I love it. I get to work with some of the best actors in the business, Bryan Cranston and Aaron Paul, who are both up for Emmy nominations. Our show is up 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 together. We film in Albuquerque, New Mexico, so when we’re off work, we have these little gatherings. Angeles: The whole show is shot in Albuquerque? Mitte: Yes. To get the full effect of everything, we like to film on location, more like a movie. We’re actually shooting twice as many days on location as we are onset because we film in the caverns and the desert. It brings more reality to the crystal meth-making. Angeles: (laughs) How did you land that part? Mitte: An audition. My manager Addison and I were looking for the right script for me. I have a very low 46
case of cerebral palsy (CP). With CP, the responses to the brain are a little bit slower because at birth, the brain is damaged due to a lack of oxygen. Every type of brain damage is different. Mine affects my motor skills and the controlling of my muscles. Like, my arm jumps. While we were looking for the perfect part where I could use my disability to enlighten others, we were also looking for a good job. And when Breaking Bad came up, when I read the script, which was so well-written, I immediately thought, “I have to go for this.” Witt: Vince Gilligan, the creator, was very close to an actor in college with much more advanced CP, who eventually died, but was so inspirational to him, he wanted to add that element into the film. Mitte: I’m grateful to Vince’s friend, otherwise the character of Walt, Jr. would not exist. Vince told me, “When I first wrote Walt, Jr., I intended to have a person with the disability play this character. Not to cut anybody out, I sent it to everyone, but in my mind, I had already cast the part of Walt, Jr.” Angeles: He knew you specifically? Mitte: No, not at the time. He just had a vision of the actor for the character of Walt, Jr. I went on five auditions for this role, four here and one in Albuquerque. That was tiring. So Vince finally made up his mind and we are great friends now. He said to me, “I would not change the person I cast for this role for anything.”
Cooper: If they find a magic bullet that causes the symptoms of CP go away, will he fire you at that point?
and he said, “This kid doesn’t really have the kind of CP I’m looking for.”
Mitte: (laughs) Yeah, Vince would probably say, “Well, since you don’t have it, we’re going to have to kill you off.”
Cooper: But a good hammer in the leg—
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. Cooper: Did he use a power chair? Mitte: No. Like my character, he was on crutches and had braces, too. Cooper: So you never had to use braces? Mitte: I did have braces. But I wanted to get out of those so badly, because after a while they’re a pain in the—
Mitte: (laughs) I charmed my way through it.
Mitte: We have not revealed much about the character yet. We’re still setting up the show. We are going into our third season now. The most back story we have is a typical 16-year-old kid trying to get his life together, who happens to have CP. We’re trying to portray the reality of having the disability and the difficulties of learning to live with it, along with the other challenges like lung cancer and the destructiveness of crystal meth. Angeles: Is your character addicted to crystal meth? 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 braces, but after a while, I couldn’t do it anymore. I wanted to get out of them and do other things. I’ve always wanted to play sports. What most helped me to get out of my braces was playing soccer. I always wanted to play football, which was my favorite sport, but because of my disability, my hand-eye coordination was off. I couldn’t do that. So I gradually started playing more and more soccer. Cooper: It seems almost like a Forrest Gump thing. Mitte: (laughs) Yeah, it really was. They used to tell me, “Run, Forrest, run!” Angeles: (laughs) Is that what the braces looked like? The ones Forrest Gump had? Mitte: Kind of. Now they take this plastic silicone model of your leg, and a strap goes across the front of your shin and a couple more straps hold your leg. It makes it completely flat, because with CP, it bends. You want to tip-toe. And I just couldn’t take having that and doing that every day. Angeles: Do you use crutches in the show? Mitte: I do in the show, but I don’t need them to walk. Witt: Vince Gilligan initially did decline working with RJ because— Mitte: I was not severe enough. Witt: RJ auditioned on camera which we sent to Vince,
Mitte: Maybe. Cooper: Do you home school now? Mitte: I work with teachers on set and through a school in Louisiana. They give me my workbooks and I fill them out, send them in, and they send me a test with everything that was in the book that I should know. I am actually two years ahead. I should have been a junior this year but I am a senior. I have five credits left before I’m on to college. Cooper: What acting have you done prior to this? Mitte: I had done a little background work. I’m not a seasoned actor. I’ve only been doing this for almost four years now. Cooper: What made you think, “I want to go into acting”? Mitte: Money! (laughs) No— Cooper: Women? Mitte: (laughs) Oh, sure! No, actually it started with my 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 came out here, to Los Angeles. Cooper: From where? Mitte: I’m from Lafayette, Louisiana. We came out to get her an agent, and when I was in the agent’s office, she said, “What about you? You should try it.” She threw me a script and said, “Go for it. Read the script, ABILITY 47
Photos: Nancy Villere - CrushPhotoStudios.com
Cooper: Is she working now? Mitte: Yes. She actually booked a movie. Witt: It’s called Wildflower. She’s also done a commercial. She’s five now. Cooper: Does she still get work at that age? She’s kind 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?
memorize it, and come back into my office.” I was 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 you, you’re cute, you’re fun and I’m going to get you an agent. First, you have to go get some training.” Cooper: You knew the agent, then? Witt: I did. I had sent his sister to this agent. Cooper: So you knew his sister first? Witt: Yes. His mother had called me and said that while they were at a theme park in Texas, someone stopped them and said, “You should get your daughter into the entertainment industry. Go to California and meet a man named Addison.”
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 hair, and now it’s like this. Angeles: Is it from California? Mitte: No, Louisiana. Angeles: When you drive, do you require any special equipment in the car? Mitte: I don’t. I have enough control over my body to drive perfectly fine. Cooper: Except that you’re 16. Mitte: I’m actually a good driver—in these. [puts on his glasses] How do I look? Cooper: Smarter.
Cooper: He’s the man. Witt: When she called, I said, “I don’t work with children that young,” because she was two years old. But the more we talked, I learned that she had gone to college— Cooper: At two years old she went to college? Witt: (laughs) Their mother had gone to college in Tyler, Texas. And I’m also from Tyler, Texas. So I said, “Well, that’s a little bit of a coinkydink. Why don’t you come out and we’ll talk about it?” Once we established a relationship, then RJ came out with them and I sent them to the agent.
Mitte: Oh, that’s not good. I don’t need to be looking smarter. I’m already smart. (laughs) Witt: When his mother talks about his CP and the work they did, it’s phenomenal. It took a while before he was even diagnosed. They thought it was all sorts of other things. I think he was about three when Shriner’s Hospital diagnosed him with CP and gave him a list of activities that his mother had to participate in, simple things like folding washcloths. He would fold a whole stack of them and his mother would knock them over and force him to start over. Mitte: It was so nice. A lot of people with disabilities
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 foundation 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? Mitte: Building houses. The foundation donates libraries and also builds houses for Habitat for Humanity. Last year we took a group of kids overseas and built houses for the homeless there. I was in Austin a month ago doing a groundbreaking for a new library in Bircham, a small town outside of Austin, Texas, where my grandma grew up. When Katrina hit, I went to Louisiana. It was very hot. I did a lot of work there and helped rebuild church roofs.
wanting to help, and that help sometimes hinders the independence of the individual. Without letting them try and even fail, they’ll never know if they can do it. So I’d love to do some work together in the future. Mitte: That’d be great. Witt: RJ just recently became one of the spokespersons for I AM PWD, (Inclusion in the Arts Media of People With Disabilities). It’s through the Screen Actors Guild. Cooper: Along with Robert David Hall?
Cooper: So you see the value in volunteering? Mitte: Yes, it’s a great experience to help other people. Cooper: So what would say to other teenagers? Mitte: “Get to work! Don’t be lazy!” Cooper: Maybe we can work together on the ABILITY Build program? We partner with non-profits that build homes, like Habitat for Humanity, and help them outreach to people with disabilities to volunteer in building homes.
Mitte: Yes. They just asked me if I would like to volunteer my time and work with them, and I said, “Of course.” Cooper: That’s an interesting initiative to increase awareness. Robert David Hall has been an advocate for so many years. Here’s a guy who’s actually made it, and he still continues his advocacy work. He’s a good guy. Angeles: Do you surf? Mitte: I’ve been wanting to learn. I like to snorkel. I do 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. Mitte: Yeah, that’d be great. People with disabilities don’t realize what they can do unless they try it.
Angeles: I was just surfing this morning. I know the best place for beginners. Witt: Do tell. I’ve been wanting to start.
Cooper: And people need to give them the chance to try it. Mitte: That’s a problem. Some people think because they have a disability, you have to do it for them. A disability is just a part of your personality. You may not be able to do some things, but some people can’t do some things that you can do. Cooper: There’s the maternal or paternal nature of 50
Angeles: On PCH near the Malibu Pier. Mitte: I’ve been trying to find a good beginner’s spot. I know better than to mess up a career surfer’s wave. Cooper: San Onofre has a spot called Old Man’s. It’s a perfect place to learn, because you don’t want a fast wave. You want to start on a long board on a slowmoving wave.
Mitte: I think once I get the chance to start practicing, I’ll be really good at it. Witt: Yeah. You’ve got really big feet. Mitte: I’m just trying to find the time. Cooper: Do you ever do any motorcycle riding? Mitte: I used to.
producing or directing. You can take ideas from people, but you want to make it your own and do your own thing. Bruce Willis and Samuel Jackson are two very different actors, but you want to watch both of them to see what they’re going to come up with. I like to keep an open mind and think,”maybe I can do it this way” or throw a twist on it and become a different character in each role I portray. 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: If I can do it, I can do it. My mom won’t let me get a street bike. This is a dirt bike that only goes 70 mph. Angeles: (laughs) So what are your long-range goals and what would you like to see happen in your future? Mitte: I’d like to start my own agency and I want to produce and direct, but I still want to act. Acting is a business, and sometimes you can act forever, but sometimes you need a plan B. I’d also like to open a restaurant in Albuquerque. Angeles: What kind of food? Mitte: Anything, really. I can make some good Creole food. I think it would be cool to have a restaurant in the front, with a side entrance you would have to know about where you knock on the door, and it would open up to a little bar-lounge area. In Albuquerque, those are the big things. We like to go to places where the stars go and hang out. Angeles: Of all the celebrities who inspire you, who would you most like to meet? Mitte: I’ve met the majority of the people I wanted to meet.
Mitte: Oh, I get it. I was trying to figure out where you got the goats from. Angeles: As far as your long-term career, is it more about these other things you want to do and acting is just a stepping stone, or do you have an acting dream? Mitte: I love acting. I love my job. It’s one of the best and most rewarding jobs I could do for my age. I would love to have my own company, but I’d still want to keep acting. If you truly love to act, you do it with all your heart and put everything into it. If you don’t, you slowly stray away and you start doing other things. It has become a real passion of mine. Four years ago, I would have said, “Acting? What? No, I’m good.” (laughs) Angeles: What did you want to do before the idea of acting was presented to you? Mitte: I always wanted to be a Marine. My grandpa was a Marine, so he inspired me. My friends and I discussed joining the Special Forces and becoming Rangers. They can’t have my disability in the military, but I think I can shoot better than half the people there. I also considered getting into the business of fishing. My uncle is a professional fisherman. He was in all the newspapers in the South because he would win all the tournaments. I really 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. Cooper: So no big names.
Mitte: I love trout. It’s a good fight. Cooper: You have a lot of business aspirations. Any thought of school?
Mitte: Yeah, just little people. Angeles: (laughs) Who is your idol when it comes to acting? Mitte: I grew up watching Will Smith, and I met his family but haven’t met him yet. But I don’t really have an idol. You can’t really focus on one design of acting or
Mitte: I’m going to UCLA. From working with the Foundation, I already have a lot of business aspirations in the works, so I want to get my master’s in business, and I’m going to minor in theatre studies. One problem with college is that I’m in Albuquerque six months out of the year. And I have another movie at the end of this 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, so I’m in a wheelchair and I can’t move. I can just gurgle and my brother is a neo-Nazi. I’m in the hospital, and—well, I won’t give it away.
Angeles: Does your family love it too?
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 forehead and I’ll be yelling in a pitcher, holding my arms out. “Yeah, this is RJ Mitte.” (laughs) No, I won’t have tattoos or anything like that.
Mitte: Actually, she had a back injury six years ago from a car accident and has two herniated disks. She’s had three surgeries since the accident. Right now she’s 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 dad’s from Austin, Texas. I lived in Louisiana for a couple of years and then we moved to Austin to take care of my grandparents. We were there for four years taking care of my grandma, who had cancer. Then I came back to LA to work. My grandma, grandpa, my other grandpa, and my great-grandma all died within a couple of months.
Mitte: She worked for a different foundation, Angels of Mercy. It’s for elderly people who can’t help themselves. They bring food, help them with groceries, help them get around their house and spend time with them.
Angeles: I’m so sorry to hear that. How did your parents meet? Mitte: My mom was working for a hotel in Philadelphia. My dad owned the hotel and he was raising hell about something. Cooper: She was the one causing the problem? Mitte: (laughs) No, she was trying to solve the problem. She managed the hotel. My grandpa owned the whole company, actually, and my dad helped him by working there. Cooper: The same grandpa that owned the insurance companies and started the Mitte Foundation? Mitte: Yes. Angeles: So your whole family is now in LA? 52
Mitte: I really go alone most of the time. Addison goes with me. My mom doesn’t really care much for the whole red carpet scene. She says, “Go have fun.”
Witt: She also did interior design and real estate. Angeles: Your sister’s with her? Mitte: Yes, my grandma and my little sister are with her in Louisiana right now, because she’s having another surgery tomorrow. Cooper: Are you going to go back and see her? 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 mom will be back on the 27th. Cooper: Do you have any issues with spasticity? Mitte: I do. I take backlofen for it. It’s a muscle relaxer that calms the spasticity down and really helps relax my muscles. Angeles: So if your character has more advanced CP than you, do you have to act like you have more severe spasticity?
Mitte: I do. Actually, my spasticity acts up if I sit in cars and I bend my legs certain ways. The muscles will start twisting and contracting. It depends what kind of CP you have. With certain CP, the muscles don’t tighten, they are too loose, so you can’t really move your body. With my CP, the muscles contract. Angeles: AMC is American Movie Classics. I always thought they only played old movies. Mitte: They still play old movies. They’re trying to get more modernized now. It’s such a new station to a lot of people that they can do almost anything they want with the show. For instance, in the pilot, this girl comes out topless with Aaron Paul, who plays Jesse— Angeles: Is he the actor from HBO’s Big Love? Mitte: Yes. He comes rolling out of the window while the DEA is breaking down his house to arrest him, and this girl comes out topless with these big breasts! AMC is really pushing the envelope. They’re not worried about losing people, because they have their fans who love it and will watch almost anything on AMC. Angeles: Like HBO, they can make their own rules and include profanity and nudity? Mitte: We cannot. We blur out nudity and bleep profanity, but on the DVD we let it rip. Angeles: If someone wants to start watching the show
from the beginning, how do they get the DVDs? Mitte: Places like Best Buy or Circuit City, ask for AMC’s Breaking Bad. Angeles: So how will your life change when you turn 18? Will you get an apartment? Mitte: I will probably get my own space when I turn 18, just to call friends over and be loud. Angeles: With your birthday right around the corner, what are you going to do to celebrate? 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 and wouldn’t get in trouble. Cooper: What’s new for your character on the show? Witt: For the first two seasons of Breaking Bad, it has really been about setting up the foundation of the show, developing Bryan Cranston’s character and the other main characters. The creator and writer-directors told 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 line, and I’m hoping that they’re going to delve more specifically into the CP and how that is a part of their family dynamic. They told me we’re going to be very surprised. There’s going to be a lot more involvement. You’ll probably see him in a relationship, at school, a lot more things going on. amctv.com/originals/breakingbad ABILITY 53
erebral palsy (CP) shows itself in different ways and with varying severity, and the manifestations of CP are usually recognized before the age of three. CP affects the brainâ€™s control of the muscles; thus, poor coordination (ataxia) of one or more limbs is the characteristic manifestation. The effects may be hardly noticeable, severely debilitating or anywhere in between, but most people with CP live productive, meaningful lives.
Effects on the limbs include being flaccid (meaning too floppy) or, more commonly, being spastic ( meaning too tight). For instance, the legs might be bent at the hips and knees, causing the person to have a crouched gait. When people with CP are walking, their legs may also strike one another like blades on scissors. This is called a scissoring gait. Spasticity and ataxia may also affect one or both arms. The majority of people with CP are born with it. A few others develop it in the first few months or years of life. Either way, it is the result of damage to areas of the brain that control muscles. In those who are born with CP, the damage is believed to occur in the womb or during birth. People who develop it early in life do so as a result of experiencing infections or trauma involving the brain. Infection of the brain is called cerebritis and is often caused by a virus. Infection in the spinal fluid is called meningitis and can be due to a virus or bacteria. Spinal fluid infections can also cause cerebral palsy. These ailments are more common in early childhood than later in life. Since the brain is still developing in early childhood, it is more sensitive to the damaging effects of these diseases. CP is not a progressive disease, nor 54
is it reversible. The way a person is initially affected by CP generally continues pretty much unchanged throughout the rest of life. By and large, life-span is not significantly reduced in persons with CP. While there is no treatment for the damage to the brain, the deficits caused by CP can be addressed with certain forms of treatment. The earlier treatment begins, the better the person functions in the long run. Healthcare professionals use physical therapy and occupational therapies to assist persons with CP to adapt to their condition. Other treatment includes giving medications to help control the seizures and pain that occur in some cases. Orthopedic surgeons provide another treatment for the disorder by severing tendons to improve movement that has been impeded by spasticity. This procedure to cut them is called a tendon release. Tendons are tough, fibrous structures that connect our muscles to our bones so that when the muscles contract, the bones move. Braces and other orthotic devices improve some anomalies in CP patients without surgery. Assistive devices like wheelchairs and crutches may also be necessary. Advances in medical technology are sometimes applied to the problems caused by CP. Spasticity is one such problem. It is typically treated with medications that relax the muscles, but these drugs have distressing side effects when taken by mouth. In order to better administer them, Medtronic corporation manufactures a medical pump approximately the size of a hockey puck, a device which is implanted to continuously deliver an antispasm drug directly to the spinal cord. Implantation of the pump requires a minor procedure to place it under
the skin on the abdomen. Then a small tube is inserted under the skin from the pump to the middle of the back where it enters the spine. The end of this tube rests in the spinal fluid surrounding the spinal cord. A muscle relaxing drug pumps into the spinal cord fluid where it takes effect. This procedure greatly reduces the amount of the drug circulating in the blood stream to other parts of the body and so diminishes side effects in the brain.
the process that caused CP in a given individual also damages other areas of the brain, intelligence is not disturbed. Brain injury, infection, and too little oxygen at birth (anoxia) sometimes damage other areas of the brain causing cognitive disorders in addition to CP. However, cerebral palsy refers only to the problems with movement in the arms, legs, speech or other muscles.
A small reservoir in the pump provides storage for the drug. When it becomes necessary, refilling the reservoir with the drug requires placing asmall needle through the skin (percutaneously). The amount per minute of the drug being delivered is adjusted to an individualâ€™s needs. This rate of delivery and the amount of drug remaining in the reservoir are measured and regulated with an external censor placed over the pump and connected to a computer that assesses and controls the pump. During regularly scheduled visits, the doctor confirms and adjusts the rate if needed. Also, the reservoir may be refilled at this time if it is nearing empty.
Research on CP began years ago and is ongoing. Funding for research comes from numerous sources including the Federal government and money raised by the Jerry Lewis Telethon. Supported by this funding, scientists are searching for genetic defects associated with CP. They are also investigating in association with CP various problems and diseases that occur before, during and after childbirth.Traumatic events like bleeding, anoxia and seizures can release detrimental chemicals into the brain causing CP. Many researchers focus on these.
Spasticity in the arms or legs is the most frequent problem in CP, but since speaking requires the coordinated movements of muscles in the face, mouth and throat, CP occasionally affects the ability to speak as well. Various electronic and computerized devices are available to assist with communication skills in persons whose speech is affected by CP. Movement or speech dysfunction define CP, but unless
About 800,000 people living in the US have CP. It occurs in roughly 10,000 births each year or at a rate of approximately 2 of every 1000 births. This statistic does not change much, but the abilities of persons afflicted are increasingly being enhanced by therapeutic advances. Although they face challenges, most people who have CP are intelligent, contributing members of society. by E.Thomas Chappell, M.D. ucp.org ABILITY 55
ne side effect of my deafness is that I’m always presuming a physical intimacy, usually where there 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 people 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 transformations. 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 doctors, 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 government. 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 mustered out and the props were snatched away, we suddenly 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 planning since her very first day of ballet in postwar Stuttgart, when the German dance instructor pronounced her name Truddy, as in Cruddy). As Gail, she ditched her glasses for contacts and enrolled in the theater 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
couldn’t be with her own two children, exactly our age, who were at home by themselves while she folded our clothes and fixed us dinner.
sorry, I don’t understand,” had sent the offending teacher into chagrined retreat, I would snicker under my breath, “Terri—the devil’s poodle.”
That year everyone in our house was busy dealing with their own upheavals, even dreamy little Tenley, who faced the cold awakening of first grade. If I were going to make my life a happy one, I’d have to do it on my own. That may be why at age 11, I made the calculated decision to quit acting pissed off at my glasses and hearing aids and use them instead as comic props. Laurel and Hardy, Buster Keaton, Charlie Chaplin, Red Skelton, the Three Stooges, Lucille Ball, Carol Burnett, Jerry Lewis, and Daffy Duck: that was the comic cluster of gods at whose feet I worshipped, so I’d learned all the good tricks. With their movie and TV guidance, I started cultivating a talent for risk and self-mockery that turned me into my own early version of Jackass. I’d open the classroom door with a too-quick jerk and whack myself on the nose so hard it would send my glasses flying. I’d aim for the wadded-up napkin on the cafeteria floor and pratfall right on my butt. I’d flatten my body against the school staircase and bump down the filthy steps like a steamrolled cartoon cat. I’d run full tilt toward the outside cinderblock wall of the gym and scrabble up it until gravity lost me and I’d drop. My no-holds-barred clowning made my deafness just another part of the joke, and when I’d jolt or thump or wallop or bang, I made sure my hearing aids would ring like mini sirens so I could scream, “I’m a bomb!” and explode in a shower of spit. I even embraced the despised slurring blur of my speech after I inadvertently discovered, when my English class took turns reading Truman Capote’s A Christmas Memory aloud, that a lisp could be used to great comic effect.
My crush on Suzanne went way beyond the correct use of ‘y.’ She was one of the few teachers not taken aback when I zeroed in on her. Once when I came barreling into her classroom, glasses askew and hearing aids abuzz, she raised her eyebrows and commanded me to sit, as if I were a skittering puppy. She leaned over, pushed my ear molds back into place, settled my glasses back on my face, then gave my forehead a leisurely little flick with her finger. From that gesture on, I was hers. Suzanne didn’t flinch from the energy and desperation of my devotion. She simply used it the same way Dolores, my Bambi love, had at Lions Camp—to get me to do what she wanted. What Suzanne wanted was for me to learn to speak clearly, without a lisp, without a slur, so that what I said wouldn’t be obscured by the way I said it. I don’t know why she loved me as much as she did. Other teachers gave me their time and attention, but hers was so particular, so physical. I once told her, when I put my hand on her back as she was talking, that it felt as if the words were vibrating in my palm as she said them.
By the time I was 12, I had cemented my reputation as a class clown with a temper and a streak of the wild. It would take me another two years before I’d slow down on the tricks enough to reawaken to my own body and realize I could use all that excess of feeling as a different way to hear. I owe that discovery to a tendresse I developed at age 14 for Suzanne Wood Brown, my high school speech and debate teacher, just out of college and still something of a teenager herself. She was a tall, bigboned woman with a bit of an overbite. She had shrewd brown eyes and nice thick lips that always seemed to be mildly smiling. In the fashion of the time she wore her light brown hair in a high-rise beehive. At my hypersensitive age, little things pushed me into furious crushes. Teachers who remembered to spell my first name with a ‘y’ could expect every blessed holiday commemorated by Mardi Gras beads, plastic loving cups, chocolate roses, or minty little hearts stamped with my sentiments exactly. The lack-loves who spelled my name with an ‘i’ could expect an in-class vintage performance of deaf incomprehension the likes of which only the brothers Mike and Nicky had seen. After my string of “Huh? What? Could you repeat that again? I’m
Thereafter, when my voice slipped into a flat, monotonous drone, she’d tease me, trying to coax me out of my habit of thinking how I ought to be hearing so I could concentrate on how the sound was actually moving through skin and bone. She meant to help me find the root physicality of hearing. She’d rest her chin on the back of my head and recite lines from “The Congo,” with all those boomlay BOOM’s. She wanted me to feel the chanting beat of that Vachel Lindsay poem right inside my skull. She’d press her fingers against my windpipe just hard enough for me to feel the pressure of my own breath as speech in its rawest state. Then she’d put her palms on my cheeks or mold my lips into a little moue, to start me playing with the shapes of my teeth and tongue, so I could use them to refine the crude expulsions of air. Over the next three years, she worked with me like that, using my ardent desire to please her to teach me control over my speech. I would never lose my touch of deaf speak, that dead giveaway of a lateral lisp. Even now, if I let down my guard, the words out of my mouth turn gluey and thick. But by age 16, after two and a half hard years of effort, I had embraced the pleasure of that discipline so intimately, I seldom let down my guard. I was keeping tight rein over one or two other impulses as well. My visions, contrary to the doctor’s long-ago predictions, would still periodically lift me up and away, but the month I turned 16 I put a stop to that. I’d been cast in the old theatrical warhorse of Thornton Wilder’s Our Town. I’d never been cast as the ingénue before, always as the comic relief, but I’d worked hard with Suzanne to get my speech cleared up, to get a grip on the slur, to mimic the correct inflections of sentences I couldn’t hear. Being cast as pretty, doomed Emily was ABILITY 57
my reward. On the first night of performance, I’d just set foot onstage and before I could get a word out of my mouth I was pulled up into the air and held dangling above the scene. The cafeteria stage, the school, my whole little world—it was like the top of things had blown off once more. When I saw my body in miniature, mouthing words on that tiny stage beneath me, my thought was almost a gripe: Who is that saying my lines? I felt cheated of the whole experience of finally acting the role of a girl, the easiest and hardest role I’d played to date. I’d been dumbstruck to discover the role of ingénue was all about keeping still. Absolutely no energy required. No need to contort my face into a perpetual grimace the way I did when I played that disapproving old starch, Lady Bracknell, or make my jaw go as slack as it could get without drooling when I played the pesky idiot brother in Antic Spring. All I had to do was quell my inner cyclone, keep my face immobile, my eyes wide, and my voice loud and precise enough to hear. Then die off quickly. During a rehearsal, after my character Emily kicked off and took her place in the town graveyard, one of my male costars blurted out admiringly, “You look great dead!” Since I wasn’t in motion, the boys had a chance to look me over, see I actually was a girl and becoming a pretty one at that. It seemed to have shocked them... I couldn’t wait to test the effect on a wider audience. Up aloft in the air on opening night, I felt so angry to be missing my anticipated moment of seductive triumph. My next thought was a declaration: I will never do this again. The minute I had that thought, the diffused and floating fabric of my being seemed to regather, narrow into a funnel, and pour back into my body. I hadn’t missed a single cue, but from that moment on I never again had another vision, never again left my body behind. Although sometimes, even now, looking out my bedroom window at a pumpkin moon or at a thin cold sliver of one, I can feel a pull, almost like a call. My queer impulse was the other thing I was trying to get under control. I think I must have suspected I was queer from age five, and was happy to discover its sexual component at age seven with a blonde my age named Sunny during a game we called—and to this day I’m embarrassed to remember—“milking the cow.” You can
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 describing 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 further clarification. I thought I was being immensely discreet when I offhandedly mentioned at dinner that night that I’d looked up “homosex—.” I didn’t even have time to finish the word. It was like I’d shot off a gun and stampeded cattle. The commotion it caused left me with the strong impression that homosexual was the wrong side of the sheets to be on. The dictionary mentioned desire and that’s how I imagined “homosexual”—as being in the throes of longing. I knew longing. It seemed a pretty OK state to be in. Longing had moved me to work hard for all my teachers, but especially the women, because they were gentle with me and that gentleness, besides making me less afraid of disappointing them, made me yearn to please them. That yearning only intensified with Suzanne, who reintroduced me to the pleasures of my own senses. She was passionate with me, passionate about what she saw as my talents. She took chance after chance on me by entering me into dozens of speech competitions. When I finally won one, won a big one, a statewide competition in the reading of poetry, she and her husband at the time took me out for lobster, and she gave me my first sip of champagne right out of her own glass. It’s no wonder I longed for her, that my longing blossomed into an ache I feared, exulted in, and kept in check. Or tried to. The same way I tried to keep my sexual feelings for the boys in check... But even though I made endless lists of names for the 10 children I thought I might one day have, during those years when abortion was a crime and contraception itself exuded a sulfurous whiff, there was no one more afraid of pregnancy than I, the deaf queer already so taken aback by her own body. I’d touch and let the feeling be mutual, but I wasn’t going to get carried away. Not by sex. Not even, if I could help it, by yearning. I was going to do something with my life. Exactly what, I didn’t yet know, but I was almost sure of it. Suzanne had convinced me I was a smart girl, smarter than the nature of my deafness allowed people to see. I’d simply have to work that much harder to let it be known. All my hard work had to culminate in something extraordinary. That’s what I kept telling myself and what the little horoscope booklet I’d bought, detailing the secret power of Scorpios, was telling me, too. My last year of high school, when we seniors were being called in to consult with the guidance counselor about our paths in life, I couldn’t wait to hear what he had to say, what guidance he was going to give me, what great path he was going to suggest. meanlittledeafqueer.com
ACROSS 1 Senator working to get the Christopher Reeve and Dana Reeve Paralysis Act passed 4 Miss International 2008, Jayna 8 Peter, Paul and Mary, e.g. 9 The “Sin City” star who was one of the recipients of Love Our Children USA’s “Mothers who make a difference” award. Jessica ___ 10 Sundance Film Festival film with an autism theme 12 Amy Winehouse hit 15 They come after downs, hopefully 16 Nicholson and Freeman in movie about two people who decide to enjoy their last days (goes with 46 down) 18 Follows instructions 19 He overcame suppression and intolerance with peaceful revolt 22 Gets close to, ___ with 25 That is 26 Bodybuilder’s pride 27 Roman 6 29 Have on 31 Augusta state 32 Top hockey star formed Foundation to teach underprivileged children important life skills through sport 37 NY railway 38 Important dogs! 39 More energy efficient bulbs 40 Copper symbol 41 Conger, for one 42 Charleston state 44 Costa del ___ 47 People who freely help those in trouble and in need 49 Voice for civil rights and full equality for African Americans 51 Region where “The Bourne Supremacy” opens 53 Position at bridge, for short 54 Harp cousin 55 Lab work 56 Give it a go
DOWN 1Soul mate? 2 Actor Lowe 3 Fashionable 4 Cancer survivor who made a huge cycling comeback 5 “The One” star Jet 6 Olympic light source 7 Women’s Motocross Association champion who is deaf and won the title in her rookie year: _____ Fiolek 8 Record 11 Jazzman with a noble first name 13 Count in jazz? 14 Sundance Festival film about an abused girl whose fantasy life saves her until she can save herself 17 Very long time periods 19 Sport 20 Pres. who abolished slavery 21 Brown, for one 23 Lives 24 Inlaid 25 Tee off 28 Get ____ (really hot and bothered about something) 30 Jessica Simpson’s sister 33 Helping 34 Striped shirt wearer 35 Offspring 36 Habitat for Humanity founder 38 Prefix with political 39 Shows genuine concern 41 “Goldmember” doc 43 End of World War II day 45 Sooners’ locale 46 See 16 across 48 Easily usable Scrabble word 50 Negative alternative 52 Island, for short
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Published on Aug 6, 2009