2012 /M F D H $4.99 AR EB WORACYZK OPE

MAGAZINE VOLUME 2012 HOPEDWORACYZK FEB/MAR THE VOICE OF OVER ONE BILLION PEOPLE 2 ABILITY ABILITY 3 MANAGING EDITOR Gillian Friedman, MD Madalaine Boregio MANAGING HEALTH EDITOR E. Thomas Chappell, MD

EDITORIAL DEVELOPMENT DIR. Pamela K. Johnson Photo courtesy of CONTRIBUTING SENATOR U.S. Sen. Tom Harkin (D-IA)

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

EDITORS Dahvi Fischer Renne Gardner Regina Hall Doha at night p. 20 Molly Mackin Josh Pate David Radcliff 6 HUMOR — The Parent Trap Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD 7 ASHLEY FIOLEK — Teaching the Next Generation of Riders Romney Snyder

HEALTH EDITORS 11 ELEONORA RIVETTI — Italian Motocrosser Makes a Pit Stop Moses deGraft-Johnson, MD Larry Goldstein, MD 12 SEN. TOM HARKIN — Keeping All Students Safe CONTRIBUTING WRITERS Haiti p. 14 Ashley Fiolek Paralympic Games Beijing Gale Kamen, PhD 14 HAITI — Rebuilding After the Quake Jewel Kats Myles Mellor - Crossword Puzzle Paula Pearlman, JD 20 QATAR — The Fifth International Shafallah Forum Allen Rucker Zainab Sultan Betsy Valnes 28 CHRIS WELLS — Deaf and Blind Student Earns PhD Danielle Zurovick WEB EDITORS PATRICIA SHIU — Holding Contractors to a Higher Standard Stan Hoskins 32 Shafallah Forum p. 20 Music Within Mary Shafizadeh 38 DOCUMENTARY — Traveling the World on Two Wheels GRAPHIC ART/ ILLUSTRATION Scott Johnson 43 RECIPES — Excerpt From the Forks Over Knives Cookbook Melissa Murphy - Medical Illustration PHOTOGRAPHY Nancy Villere— 44 HOPE DWORACYZK — An Eclectic Career CrushPhotoStudios.com Madalaine Boregio - Qatar

54 SMOTHERS BROTHERS — How They Won a Trip to Washington TRANSCRIPTIONIST Beyond the Chair p. 38 Sandy Grabowski ABILITY’s Crossword Puzzle ABILITY’s 56 ASSISTIVE GOLF — Jack Nicklaus Designs a Course for Vets DIRECTOR OF BUSINESS AFFAIRS 58 BOOK EXCERPT — How Do You Use Your Body? Ryan Brown, JD MARKETING/PROMOTIONS ABILITY CROSSWORD PUZZLE Alejandra Delaporte 60 Tina Finn Stan Hoskins CONTENTS 64 EVENTS & CONFERENCES Andrew Spielberg Friends in high places p. 8 ABILITYJOBS.COM ABILITYMAGAZINE.COM Cindilyn Boone Casey Mims ADVERTISING DISTRIBUTION CORPORATE SHIPPING Donna Mize For advertising Warner Publishing Services 8941 Atlanta Ave. information e mail A Time-Warner Company Huntington Beach, CA 92627 DITORIAL [email protected] Faxon - RoweCom Library Tel 949.854.8700 E or call Services TTY 949.548.5157 [email protected] 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Swets Blackwell PUBLISHER/EDITOR-IN-CHIEF ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 Chet Cooper (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, not be those of ABILITY Magazine PO Box 10878, Costa Mesa, CA 92627; Hope Dworacyzk Feb/Mar 2012 Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2012 ABILITY Magazine The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are cur- rently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and aware- ness, changing the lives of everyone involved.

abilitybuild.org [email protected] abilityawareness.org just returned from a three-week visit with the par- reaches in and turns off the light, but I look at it this ents in Florida. Every year I see them over the way: That’s another nickel towards my inheritance. holidays to collect my presents, and remind myself of why I fled there in the first place. Sometimes I worry that Mom and Dad are getting up in age. Their typical conversation goes like this: This trip, my father picked me up from the airport, and on the ride back to the house inquired about my departure. Mom: “Paul. Paul. Paul!” Dad: “What? What? What?” “So what time does your flight leave?” he asked. Mom: “I asked you if you were going to the store?” “I don’t know, dad,” I said. “Why don’t I get unpacked, Dad: “Am I going to get a whore?” and get back to you on that one?” Mom: “No, to the store?” Dad: “What do you need at the store?” Every morning, when I get up, Mom asks, “Do you Mom: “Some flour.” want cereal, an English muffin or eggs?” I usually go Dad: “What do you need sunflowers for?” with the eggs, which I don’t cook at home, because I just can’t clean up after myself the way my mother can. Mom: “Not sunflowers. Flour. For a cake.” Dad: “I don’t want steak. How about pork chops?” As she washes my breakfast plate, she wants to know what I want for lunch. After a few hours of I don’t After Dad gets home with pork chops, he wants to know’s, she finally just makes me something, and I catch the news. He likes politics way too much. I try to revert to being an eight-year-old boy, drinking my milk tell him there’s more to life than politics. He says and eating my sandwich. “Well we’d have a lot more in life if we had different politicians.” As usual, he’s right. They’re always right. “Mommy,” I whine, “are there any potato chips?” As she hands them to me, she asks me what I want for dinner. If it sounds like I’m griping about them, I am. It’s what I do best. And if they do a few things that cause me to Dinner is served earlier and earlier in my parents’ home. bite my tongue ‘til it bleeds, I’m sure they do the same In the past, we might not eat until 9 p.m. But now my every time I ask to borrow money. folks are in bed by that ungodly hour. I stay up much later, watching TV with the cat. But they’ve been press- Every annoying thing my parents do for me, they do out ing me to knock off earlier, too. “Maybe you wouldn’t of love. I love them, too, because I get sad every time I be so tired,” they say. have to leave them. When Dad drops me at the airport three and a half hours early, I have plenty of time to go Leave me alone, I sass them in my head. I’ll go to bed through the big bag of snacks Mommy packs for me, when I wanna, and who do you think you are anyways, and appreciate how blessed I am to have them both. Mommy and Daddy? Lately they’ve been asking me to Florida to be closer to Before he calls it a night, Dad walks around the house, them. Are they crazy? Hell-to-the naw! Although it double-checking that all the lights are off. If there was a would be nice to drop my laundry off with Mom, and job out there for a light policeman, he’d get it. I’ve pick it up at dinner time. never seen him miss a room with a light on. It is a little “Ham on by Jeff Charlebois frustrating when you’re in the bathroom and a hand a Roll”

6 ABILITY ABILITY 7 ast year an ex-pro motocross racer, Stefy Bau, The girls really seemed to appreciate the tips that Stefy approached me about doing a training and I shared with them, and even though the days were program/TV show in conjunction with sponsor long, we all had a blast! At the end of our class and the Italy Red Bull. I thought it would be a lot of fun to filming, everyone was sad to go. It was a great learning meet new girl riders and to hang out in Italy. experience for everyone.

The short TV show was called Red Bull Moto Chix. The Red Bull has also been putting on a girls’ ride day for idea was to bring in 10 girls who wanted to ride, but the last two years here in Gainesville, FL. Tarah Geiger didn’t know how. Stefy and I would teach them and (another pro moto racer) and I go out for about four or train with them for three days. Then, on the final day, five hours and ride with the girls, who are here for a big they would have a short race. Whoever won would go to amateur national race at the Gatorback Cycle Park. MX Des Nations, a huge race held in a different country each year, with moto teams from around the world com- We talk to the young women and their parents before peting against one another. the start of ride day, offering suggestions for how they can improve. My dad and Colleen Millsaps, of Millsaps When we first showed up at the training place, my dad Training Facility, were also there to talk to parents and and I couldn’t believe it. It was huge and old, made up of answer any questions they might have about training or wood and bricks, and looked a lot like Cinderella’s cas- about their daughters becoming professionals. Then tle. We all got rooms and stayed there and hung out Tarah and I ride with the girls and help them out with when we were not riding. I think it was a great chance whatever they would like to work on. for the girls with more experience to hang out with girls who were just getting into riding and racing. I like to talk The more I get into riding and racing, the more I realize to younger riders who have the same dreams as I do. that one day I will retire. I really enjoy teaching younger motocross racers, and after doing the TV show Everyday, Stefy and I would pick different sections of and the Red Bull ride day, teaching is something I may the track, and explain to the girls how to approach consider as a second career. It is a good feeling to pass them, and what different skills and techniques they down your knowledge of something that you love to do should use. Then I would actually show the girls how to to young girls who love the same thing. do it on my bike. All of the girls had a chance to prac- ashleyfiolek.com tice and ride, and then I rode with them.

Red Bull Moto Chix, Itlay

8 ABILITY otorcycle enthusiast and ABILITY’s edi- Cooper: Riding on a track like that poses different chal- tor-in-chief, Chet Cooper, was impressed lenges, and it will certainly test your endurance. I when Eleonora Rivetti sped past him at noticed that your technique was particularly good over Pala Raceway in Pala, CA, about 100 the jumps. miles southeast of Los Angeles. Cooper caught up with her after the ride and dis- Eleonora: The track here was easy. In Lake Elsinore covered that she was an Italian motocross- (CA), it was more difficult because the jumps are bigger er. They sat and talked about her riding background. than here. Once again, the road led back to our own Ashley Fiolek. Cooper: Did you ride on the main track? Rivetti, doesn’t speak English, so Andrea Girardello, her friend, did most of the interpreting. Eleonora: Yes, frequently.

Chet Cooper: Where do you live in Italy? Cooper: What do you think about the Vet track in Elsinore? Eleonora Rivetti: Near Torino. Eleonora: I prefer it; Elsinore is beautiful. Cooper: How does motocross differ between Italy and here? Cooper: What about the main track here? Did you make the big double jump? Eleonora: Here you have a lot of double jumps, which we don’t have. Here, the tracks are clean, and with no Eleonora: The track is beautiful and very fast, but that holes. In Italy, the tracks are not as well maintained; big jump is very difficult, and today was windy. Also they are cleaned maybe once a month. with a 125 bike, it’s not easy.

ABILITY 9 Cooper: You ride a 125? Did you see me yelling, “Get out of the way?” [laugh- ter] No, you were quite fast. Are you part of an Italian Eleonora: Only for today, this was my first time. In Italy, Racing team? I usually ride a KTM 250 bike. Eleonora: No. This trip was organized from Andrea Cooper: Are you sponsored by KTM? Girardello and Primo, owner of the Italian team motocross vacations. We organized a trip to Califorina Eleonora: No, I don’t have a sponsor. It’s very difficult to ride MX. The trip started with about 10 people, but to find one back home. grew to about 16 people.

Cooper: Yeah, riders have that challenge in this country, Cooper: Are you going to race here in America? too. But not Ashley Fiolek. Have you raced against her? Eleonora: I want to. In Italy racing is not expensive, but Eleonora: No. Ashley visited Italy to lead a motocross if I come to the US to live, it’s going to be costly. But camp for girls. She was the manager of the program, it’s also my dream. which was sponsored by Red Bull. They coordinated all the girls, and then they had us race. I happened to win. If Cooper: Do you know of any Italian riders with you go to YouTube, you can find some videos. disabilities?

Cooper: How did Ashley communicate with the group? Eleonora: Yes. There is another guy who did not come Did she have an Italian sign language interpreter? with us here. He is deaf, like Ashley. He is very fast. But for financial reasons, he couldn’t travel with us on Eleonora: Her father interpreted for her. this trip.

Cooper: So her father interpreted into English, and then Cooper: There’s a part of the X-Games where riders with someone else interpreted his English into Italian? disabilities compete. Do you know of anybody in Italy who rides motocross or street bikes using a prosthetic? Eleonora: Yes. Stefy Bau. She’s Italian, and she’s won a lot of races here. Eleonora: Yes, in Italy, but I can’t remember the guy’s name. He lost a hand, but rides motocross very fast with Cooper: What’s your day job? the one hand.

Eleonora: I work with my mother and father in their bar. Cooper: Have you heard of Ricky James?

Cooper: So you work at night and ride during the day? Eleonora: Yes. I’ve seen some video on YouTube. Cooper: He became paralyzed in an accident, but they Eleonora: I work during the day, and maybe race or strap him in and he’s off. He’s very fast. train with the girls on Sundays. Eleonora: That’s wonderful. How fast are the girls here Cooper: Do you do physical training beyond motocross? in California?

Eleonora: No, I just ride once or twice a week. Cooper: You’re right up there. I’m not that fast, so I rank myself to the people that are faster, you and Ashley Cooper: Is there an advanced women’s circuit in Europe, are the fastest women I’ve ever ridden with. where you might find a sponsor? Eleonora: Thank you. Tell a potential sponsor. (laughs) Eleonora: In Europe we have the world championship for women, and the Italian championship for women. So far, only my father sponsors me. italianteamsx.com

Cooper: Does he ride?

Eleonora: No, my brother does, but not professionally.

Cooper: Can you beat him?

Eleonora: (laughs) Sometimes. I might even be faster than my brother now.

Cooper: I was surprised that you passed me out there.

10 ABILITY ABILITY 11 This bill will prohibit the use of seclusion in locked and unattended rooms or enclosures. In addition, it will pro- hibit the use of mechanical and chemical restraints and physical restraints that restrict breathing or any aversive behavioral interventions that compromise health and safety.

Physical restraints would be allowed only in emergency situations, and in those instances only restraints that do not inhibit a student’s primary means of communication would be permitted. Seclusion and restraint may not be included as a component of a student’s individual edu- cation plan because there is significant evidence that including such practices in a student’s plan actually increases the use of those methods rather than decreas- ing them.

Educating school officials and teachers about the dan- gers of seclusion and restraint will also help to protect students from dangerous practices. The bill calls on states to (1) promote training programs that will reduce the use of restraints and (2) collect data on the use of seclusion and restraint practices.

Protecting Students in the Classroom Schools will have to (1) meet with parents and staff after a restraint is used and (2) plan for positive behav- Dear ABILITY readers, ioral interventions that will prevent the use of restraints in the future. Finally, the bill establishes a grant pro- Last month, I introduced the Keeping All Students Safe gram to help states conduct programming and training Act, a bill to protect students from dangerous seclusion for school personnel. and restraint practices in schools. All too often, we hear heartbreaking stories about children being injured or All of these policies add up to keeping both children and even killed because of risky and inappropriate “discipli- their teachers safer in school. I’m going to continue to nary” tactics used at school. Many of the students sub- fight here in Washington to ensure that children, espe- jected to these practices have a disability. cially those with disabilities, are not marginalized or endangered by these kinds of abusive practices. These Cases such as the recent instance of a young boy with standards are long overdue, and we must protect our autism being stuffed into a gym bag, or the tragic one in nation’s children now. which a young girl with autism in Iowa died because of lack of supervision when she was in seclusion, under- Sincerely, score the urgency of this problem.

In 2009, the Government Accountability Office (GAO) Senator Tom Harkin found that use of restraints and seclusion have led to physical injury and psychological trauma for thousands Senator Tom Harkin (D-IA) is Chairman of the of students in public and private schools throughout the Senate Health, Education, Labor and Pensions Committee country. The GAO has estimated that more than 200 stu- dents died due to restraint or seclusion in school over harkin.senate.gov the preceding five years. This is unacceptable.

Students should never be subjected to abusive or violent disciplinary strategies. The patchwork of state laws addressing this issue leaves millions of children vulner- able. That’s why this bill sets long-overdue minimum standards for protecting children from physical and psy- chological harm and ensuring a safe learning environ- ment for teachers and students alike. Every child should be educated in a supportive, caring, stimulating environ- ment in which they are respected as an individual and provided with the tools they need to succeed.

12 ABILITY ABILITY 13 n Haiti, two years out from the massive 7.0 earth- HANDICAP INTERNATIONAL quake that affected more than 3 million people, the focus has shifted from rescue mode to rebuilding. At a rooftop rehabilitation center in Haiti’s Petit-Goâve neighborhood, people who’ve been fitted with a pros- ABILITY’s Pamela K. Johnson spoke with Elizabeth thetic device after a limb amputation learn how to get MacNairn of Handicap International, a non-governmen- back into the swing of life. It’s estimated that between tal organization based in Europe; Keren Odeah Johnson, 2000 and 4000 Haitians lost a limb during the quake, her sister who works for the United States Agency for International Development; and Rachelle Salnave, a adding to the roughly 800,000 to 900,000 who were Miami-based filmmaker whose documentary, La Belle already estimated to have a disability. Vie (The Beautiful Life), seeks to capture the rich history and fertile culture of this storied Caribbean island. By air, Haiti is only a 90-minute flight from Miami, and situated between Jamaica and Puerto Rico. Along with MacNairn, Johnson and Salnave all visited Haiti between beautiful beaches, it has rich arts and music communities, December 2011 and January 2012, and took time out to and the distinction of being the first independent black share their different experiences. republic, dating back to 1804. But it continues to wrestle with poverty, political corruption and natural disaster.

14 ABILITY disgrace.” But with training and low-tech assistive devices, “people can feel they have value, and con- tribute to their families,” she said.

The rehab center staff is charged with creating assistive devices that help patients with daily tasks. One such invention was a stick with a scrub brush attached, so a patient could strap it to the leg of a chair, and then set the chair leg in soapy water and scrub clothes clean using one arm. Another device—a small wooden board with three nails—can hold a vegetable in place, while a person cuts it, again using one arm.

Patients and staff at the center sometimes cook a meal together in the rooftop’s enclosed kitchen area, breaking bread and forming an impromptu support group, where “they talk about what they’re experiencing,” said Mac- Nairn. They also share nutrition and hygiene tips.

MacNairn first traveled to Haiti a decade ago, when her husband was the assistant country director of Catholic Relief Services. Five years later, she visited quarterly while working on an employment project there. More recently she returned in February 2010, a month after the quake, in her role with Handicap International (HI). The NGO is one of the six founding members of the International Campaign to Ban Landmines, which received the Nobel Peace Prize in 1997. HI had a pres- ence in the Haiti before the quake with their food-distri- bution program, but after the disaster it quickly repur- posed its trucks to deliver a range of needed items, along with treated water, to devastated communities.

“We were struck by how some neighborhoods were hardly touched, while others were totally destroyed, such as the Champs de Mars area,” MacNairn recalled. “There was so much destruction, and so much home- lessness. I was particularly struck both by the level of injury, but also the resilience. People were quickly back to selling things, trying to survive.”

In Haiti, and around the world, HI, works to alleviate the effects of poverty, exclusion, conflict and disaster. Before the quake, many of the nearly 1 million Haitians To address the widespread homelessness created by the who were living with a disability, such as an amputa- Haitian quake, the organization built more than 1,000 tion, nerve damage or cerebral palsy, had never received transitional, hurricane- and earthquake-resistant homes, physical therapy, said MacNairn, who is executive which are accessible to people with reduced mobility. director of Handicap International’s United States office The shelters are designed to serve the most vulnerable, in Takoma, MD. and can accommodate more than 5,000 people in both Petit-Goâve and Grand-Goâve, coastal towns about 40 In the days following the quake, her organization set up miles southwest of Port-au-Prince the Functional Rehabilitation Center in the Champs de Mars area, Port-au-Prince’s main park and the site of The shelters are designed to last three years, but are political power, where many buildings were destroyed. weather resistant and can potentially last longer, if maintained properly. They have a wooden framework As the team began to treat the injured, they discovered and walls of woven wooden slats, with a roof designed that people with a disability were not only dealing with to withstand strong winds. The floor is made from a their physical injuries, but also with a loss of esteem, raised concrete slab, which will protect occupants from said MacNairn, who noted that the Haitian Creole word humidity during rainy seasons. The homes are also for disability is cocobai, which means “worthless” or “a adaptable, and can include access ramps, wider doors,

ABILITY 15 special door handles and other accommodations. said. “He was traumatized—although his amputation was from a long ago car accident—and initially he just Available in modules with a range of surface areas, the stayed and talked with others who had just lost a limb in shelters are adaptable to different size families. These the quake; he created a very calming presence.” prefabricated transitional shelters were prepared in kits by HI teams, and then transported to the field and A third individual that MacNairn recognized when she assembled with families not only to foster “ownership,” was there recently, was a young man named Marvens but also to teach some basic repair skills. Point du Jour, who had lost his mother in the quake, and now lives with an adoptive family. Amid the disaster, he had to have his leg amputated below the knee, which Elizabeth MacNairn, made him“fragile” for a time. But now, with his perma- executive director, nent prosthetic, Marvens is up and running. MacNairn Handicap International saw him kicking a soccer ball at the rehab center, and United States with his mobility restored, he can attend school, which many children with disabilities cannot.

“People with disabilities and the elderly may have deli- cate support systems that can be destroyed if someone who cares for them dies or is injured,” MacNairn observed. “We try to identify which communities are most vulnerable in advance, and work with local resi- When MacNairn first walked up to the rehab center in dents, area shelters and different organizations, so no 2010, she recalled that it was an empty shell. But upon one is left behind.” her recent return visit, it had blossomed into “an incredi- bly welcoming place,” where she interacted with some HI is collaborating with Haitian service agencies to individuals whose experiences touched her. Among place medical equipment, anti-pressure sore mattresses, them was Katia Eloi, who manages HI’s rooftop training and hygiene-care tents at key points in populated areas, program. “She is also an upper-limp amputee and is so that in an emergency, the items are nearby and easily pregnant with her first child. We talked about having a accessed. They’re also working with Haitian nonprofits baby. It was one of those universal moments that and the government to prepare for an anticipated cholera women share,” MacNairn said. epidemic during the upcoming summer rainy season.

From a previous visit, she remembered a young man Like many Caribbean islands, Haiti often bears the named Beriton Merzil, a 46-year-old amputee below the brunt of nature’s whims: hurricanes, floods, mud knee “who found his way to us after the quake,” she slides... “It is a beautiful place with lots of culture, but

16 ABILITY Many people, like Rose-Mika, must be retrained for work after acquir- ing a disability. it’s also in a constant crisis context,” said MacNairn. and recyclable building materials. Reconstruction efforts were well underway, and there was great forward motion. To offer added support to children with cerebral palsy, HI has several pilot programs at the rehab center. They I stood for a time in front of the Hotel Montana, where also visit a child’s home environment to determine what many Haitians and expatriates were killed in the earth- devices might be helpful there, and teach parents exer- quake. It has reopened, and there’s now a lot of activity cises to stimulate a child’s development. going on, such as local fairs and salsa dancing. It still looks over the entire city, but sadly the portion that “There is a great need for seating,” said MacNairn, who overlooked the mountain collapsed and slid away. explained that many children with cerebral palsy spend all day lying down, when they need to sit up to eat with- out choking, or engage with others around them.

In its rebuilding efforts, HI helps those with disabilities create income-generating opportunities, while working side by side with Haitians to ensure the nation is better prepared for future emergencies. by Pamela K. Johnson A MONTH IN HAITI

When I visited the country in May 2011, I only stayed Keren Odeah Johnson with two young friends for a few days. At that time, the rubble was still being she met during her cleared, but the devastation was evident. In the Port-au- first trip to Haiti in May Prince area, I saw tent cities and displaced person camps 2011 in several communities. There are health challenges, but there are many more The nice thing about my December 2011 visit, when I committed individuals and organizations working to got to stay for a month, is that I had the chance to trav- thwart the spread of preventable diseases. Governments el throughout the country, and connect with more peo- and the international donor community have partnered ple. Along the way, I noticed quite a few areas that are in hand-washing campaigns and water-treatment efforts fully cleared or clearing since the quake, and the rub- to prevent cholera. A number of people are getting busi- ble was organized into things that could be used, such ness training, and those who had a trade, but acquired a as broken glass that could be repurposed as jewelry, disability during the quake, must now be retrained.

ABILITY 17 At a rooftop training center, people fitted with prosthetics learn how to keep their balance in crowded cities or camps

I met a man who was in a camp and had been uncom- in the hills and valleys of an amazingly warm province fortable recuperating in a tent. He found it too cold at called Petit-Goâve. It’s walking through the tent camps night and too warm during the day. He also had difficul- of Champs de Mars, it’s chilling on the porch steps of ty caring for his wound properly. But now that his fami- the Park Hotel drinking a Prestige beer, and dancing in ly has relocated to an apartment building, he is ecstatic Petionville rocking out to a mix of Rihanna and Hait- to have a place to recuperate and is adjusting well. ian beats.

Many folks have the impression that only those from It’s discovering a group called Boukman Eksperyans, outside are working on the health-services piece: Red and grooving to the new Hip Hop sounds coming out of Cross, Doctors Without Borders, Partners in Health the music studio of Blow Up Records. My spirit is wak- and Mercy Corps come to mind. But there are also ing up to the counsel of my wise Aunt, who schools me many locally based organizations, and Haitians lead about my beloved country, but listens with an open heart the charge. And in the camps, volunteer vigilance to my discoveries. committees make sure there is no violence, especially towards women. Rachelle Salnave At Grace Children’s Hospital, which was started 50-plus years ago, I got to visit its tuberculosis children’s wing. The facility was well managed and the staff was incredi- bly caring. However, there are more steps to take to pre- vent this communicable disease.

The highlight of my trip was a road trip to Cap Haitien and Ounaminthe in the north. Along the way I got to see oceanfront, countryside and mountains. The landscapes are incredible. I look forward to returning to help my sorority charter a school.

by Keren Odeah Johnson In my first few days in Haiti, I was convinced that La Belle Vie (The Good Life)—the name of the documen- A SNAP SHOT OF MY HOMELAND tary that I’m shooting about my homeland—no longer existed. The poverty and tremendous sea of people who It’s Dec. 31, 2011, and I just landed in Ft Lauderdale a live on the streets was an eye opener. Talking to folks few hours ago after my 10-day stay in Haiti. I feel bit- who are in dire need of just the basics. Seeing small tersweet, because my spirit is still in Port-au-Prince! It’s children with no parents, pleading for food. And for

18 ABILITY During the quake, Mirielle Hippolyte saved herself by moving to the center of the courtyard to avoid having its concrete walls fall in and crush her those who have the means, like my family and friends, to people who had left their comfort zones in the US to there are huge gates with locks enclosed around their move back and be a part of the change. houses. Some have security guards and some don’t. That made it hard to see past the dichotomy of the haves On our last day, we drove through a food-distribution and have nots. port, where guys begging for money mobbed my cous- in’s pickup. They jumped on the back and banged my I was also discouraged when we drove up to La Boule window. It was scary and sad to see this on my last few in the mountains, and there were no green trees. It hours in the country, but right after that I saw Shala, looked more like a mountainous desert. I thought to “the king of Champs de Mars” on his brand new mo-ped myself: How can one really enjoy a good life under waving at us with a smile. Now 22, he has been living these conditions? But then a good friend of mine took us out of the big city and into the province of Petit-Goâve Haitian school children nestled on the south coast. As we drove along a hilltop, the view was spectacular!

When we made our way back to town, I could see some of the devastation caused by the quake, but it was very well kept for the most part. I waved at people and they waved back. Many of them smiled and posed for my camera. We had lunch at an oasis called the Hawaiian Restaurant with the best-tasting mackerel ever. The sand was black, but the sea was gorgeous and clear. It was so refreshing to get out of the city, though I knew that we only had a few hours before sunset and the return to town.

The dose of nature put me back on track, and my part- on the streets since he was 7. He is a leader in his com- ner and I set out to capture as much as we could. We munity, and when I saw his smile and his baseball hat started with a performance by singer Ne-Yo at the blowing in the wind as he enjoyed his new wheels, I Kinam Hotel, and then a fashion show produced by thought, now that’s La Belle Vie! Brothers Dread Productions. We went to my favorite tent restaurant, and then hung out at my cousin’s com- by Rachelle Salnave pany Christmas party, sponsored by the minister of handicap-international.org education. It was nice connecting with family that I’d usaid.gov never met, comparing our physical features, and talking

ABILITY 19 he Fifth Annual Shafallah Forum focused on of the rights of the disabled,” he noted, “There is still crisis, conflict and disability, and attracted the much more we can do.” First Spouses of more than a dozen world leaders, along with roughly 250 attendees from around the In the forum’s first panel discussion, “Refugees with world. The event was hosted by Her Highness Disabilities,” Teymoor Nabili, an anchor for Al Jazeera, Sheikha Moza bint Nasser Al Missned in Qatar at moderated a discussion examining the conditions in the Shafallah Center for Children with Special Needs. refugee camps and evaluating how technology and resources can promote a more inclusive environment, Coming on the heels of such disasters as the devastating equal opportunities and community independence. earthquake and tsunami in Japan last spring, famine in the Horn of Africa and floods in the Philippines, along with The panel was chaired by Sarah Costa, PhD, executive the continuing reconstruction efforts in Haiti, the Shafallah director of the Women’s Refugee Commission. She Forum highlighted not only the strain these events have stressed registration as the first step in identifying and placed on individuals and societies, but also the increased addressing conditions that affect refugees with disabil- severity these conditions place on people with disabilities. ities, urging that measures be adopted: “We need to start identifying the people with disabilities at the time Hassan Ali Bin Ali, chairman of the Shafallah Center, of refugee registration, and break it down on the basis opened the forum along with Ron McCallum, chair of of age, gender and profile of disability.” She also rein- the United Nations Committee on the Rights of Persons forced the notion that “disability is not inability.” with Disabilities, and Louise Aubin, professor and deputy director of the International Protection for the This year’s forum addresses the intersection of crisis, United Nations High Commission for Refugees. conflict and disability as a means to bring attention to the “double discrimination” affecting refugees with dis- In his welcoming remarks, Ali Bin Ali called on those abilities. Francesca Bonelli of the United Nations High countries that have not signed the UN Convention on Commission for Refugees, and Scholastica Nasinyama the Rights of Persons with Disabilities to do so as a of InterAid, suggested that refugees with disabilities means to better cope with natural disasters. face multiple challenges, including being shunned by their communities. They also lack infrastructure, migra- “Although we have made long strides in the advancement tory status, permanent residence, basic sanitation, and

20 ABILITY adequate living conditions that enable their mobility. In a discussion on community-based efforts to aid per- sons with disabilities, Rooshey Hasnain, project director In Uganda in particular, decades of civil war have created of the University of Illinois at Chicago, called on the more than 160,000 refugees, according to government international community to take proactive steps in crisis figures cited by Yusrah Nagujja, disability officer of the management, instead of addressing disasters in an ad Refugee Law. hoc manner. Referencing figures from Hurricane Katri- na, a Category 5 hurricane that devastated New Orleans She estimates that 2000 of Uganda’s refugees have dis- in 2005, Hasnain cited that nearly “25 percent of the abilities, and cautioned that these figures have likely been African-Americans who were affected by the storm’s underreported. On top of that, many Ugandans have fled destruction were disabled.” into neighboring countries following violence spurred by the Lord’s Resistance Army. Famine in East Africa However, she noted that even in the face of total chaos, has exasperated these conditions. She called for research natural disasters could bring about positive change. After and data, along with funding to promote economic an earthquake struck Izmit, Turkey, in August 1999, the empowerment, resources and job skills. Turkish community responded to its lack of mental-health services—one mental health specialist for every 100,000 The second panel shifted the focus to persons with dis- citizens and a mere 50 child physiotherapists in the totali- abilities amongst the displaced refugee communities in ty of Anatolia—by expanding services to those with the Occupied Territories, Lebanon, Jordan and Syria. developmental disabilities. Hasnain stated that although it Five years into the global economic crisis, with stagnant took a natural disaster to spur change, the Izmit earth- recovery amongst donor countries, organizations operat- quake was a teachable moment for the Turkish people. ing within the Occupied Territories face a shrinking pool of funds. This, coupled with “donor fatigue,” means Not all natural disasters have brought reform in affected fewer resources to address the conditions of people with countries. Though both Bangladesh and Pakistan have disabilities in the Palestinian Territories. suffered heavy flooding in the last several years, they were still ill prepared to meet the needs of more recent Rana Al Zawawi and Hasan Husein of the United flood victims, let alone the needs of those with disabili- Nations Relief and Works Agency compared their strug- ties. Nazmul Bari, director of the Center for Disability in gles working with Palestinians with disabilities, both as Development, cited the World Risk Report for 2011, refugees outside the Palestinian Territories and within which listed Bangladesh as the second riskiest country for the Gaza Strip, respectively. As a Palestinian with dis- investment in the South Asia-Pacific region, because 20 ability living in the Gaza Strip, Osama Abu Safer shared percent to 68 percent of the country is prone to flooding. his experiences in coping with a Gaza that had been broadly destroyed during the 2009 Israeli bombardment. “Large-scale flooding causes major accessibility issues for persons with disabilities,” said Ghulam Nabi Niza- During plenary remarks at the day’s luncheon, Cherie mani, CEO of the Pakistan Disabled Peoples’ Organiza- Blair, co-chair of the Shafallah Center and wife of for- tion. He is from Baluchistan, a semi-arid province in mer British Prime Minister Tony Blair, acknowledged southeastern Pakistan that receives minimal amounts of the center’s growth and expansion since the forum’s rain annually, overwhelming the region when torrential 2006 inception. rains fell for five hours and caused severe flooding.

Following Blair’s plenary remarks, UN Under Secretary Devon Cone, a protection officer with Refugee Point, General for Humanitarian Affairs and Emergency Relief shared her experience of dealing with discrimination at Coordinator Valerie Amos lauded Her Highness Sheikha the Dadaab Refugee Camp in Northern Kenya, one the Moza bint Nasser and the state of Qatar for their efforts largest refugee camps in the world with hundreds of to alleviate the plight of those with disabilities around thousands of displaced Somalis. the world. Offering a figure from the recent natural dis- asters in the Philippines, Amos highlighted that “only Refugees with disabilities, specifically children, face 120 out of 1256 people—or 10 percent of people with harassment from fellow refugees who are not well- disabilities had shelter in hard hit areas after the Philip- versed in dealing with persons with disabilities. In pine floods.” Finding ways to manage and deal with Dadaab, Refugee Point works for inclusive processes of these issues is an important matter of discussion at this involving the disability community in outreach, educa- year’s forum. tion and planning. She has found counseling intervention the most efficient and direct way to improve the liveli- On the second day, panelists discussed inclusion efforts hoods of those with disabilities and their families. “Com- for women, children and minorities the world over— munity support structures are an effective form” of rais- from refugee camps in Kenya to the flood plains of Pak- ing the quality of life for those doubly discriminated istan. And disability experts addressed the need for against in refugee camps. poverty-reduction strategies and independence amid a period of profound global economic downturn. “At-risk women, children and minorities with disabilities,

ABILITY 21 • Third and lastly, the principles in the UN Convention on the Rights of Persons with Dis- abilities should underpin all humanitarian efforts and international protection frame- works, particularly Article 11 - calling on gov- ernments to develop National Action Plans or Policies, which identify strategic actions, pri- orities and resources, and determine responsi- bilities and timeframes at the national level.

At a gala dinner, HRH Prince Mired Bin Ra’ad Al Hussein of Jordan praised Her High- ness and Ali Bin Ali for taking “bold steps” with their formation of the One Billion Strong organization, and reaffirmed bi-lateral cooper- ation on elevating disability issues. Rima whether displaced by natural disaster or conflict, com- Salah, deputy executive director of UNICEF, pete with other victims or refugees for goods and ser- lauded the state of Qatar for signing and ratifying the vices and as a consequence, suffer two-fold,” said Cone. CRPD and the Anti-Personnel Mine Ban Convention. She highlighted that in an effort to ensure the safety of children with disabilities in Dabaab, several women Ali Bin Ali called on the forum’s attendees to sign the came together to care for these children while their par- Shafallah Declaration on Crisis, Conflict and Disability. ents sought food, services and treatment. By endorsing this declaration, he explained, “We will be encouraging adoption by the global community of the Panelists called for local, community-based solutions UN-CRPD, and we will be establishing a concrete frame- to improve the conditions of persons with disabilities work through which to begin addressing the rights and that are proactive, not reactive, as well as cooperative conditions of people with disabilities. Through ratification and direct, so as to create more efficient and effective of the UN-CRPD—specifically resolutions that support ways of addressing the many issues faced by those Article 11—we will lift the status of the one billion per- with disabilities, whether in cities or refugee camps. sons living with disabilities, of which 800 million live in poverty, 6.5 million of them being refugees or displaced.” On day three, Ali Bin Ali held an international press con- ference, calling for inclusion, implementation and reaffir- Chet Cooper, editor-in-chief of ABILITY Magazine, mation of “rights-based frameworks” in response to sat down with the chairman of the Shafallah Cen- emergency and post-conflict scenarios. ter after his press conference to get more specifics on the new initiative. He announced the creation of One Billion Strong, an international NGO focusing on elevating the status of Chet Cooper: Who came up with the idea of One Billion persons with disabilities. He defined the objectives of Strong? the organization as petitioning to “support the true implementation of the United Nations Convention on the Hassan Ali Bin Ali: It’s an initiative which came from Rights of Persons with Disabilities through global the last forum where Her Highness asked all the first awareness-raising of disability issues and in-country ladies from around the world: What can we do globally development programs at the community level.” for the disabled? The first ladies can help us because they are near the leaders, and can talk to them about He summarized the forum’s three main recommenda- issues that concern us. So we’ve created an organization tions on ways to address disability in crisis and conflict called One Billion Strong. We took the name from the scenarios: World Health Report of 2011, which estimates that there are more than a billion disabled people in the world. • First, disability must be an integral part of all emer- We’ve registered the name in Geneva, and we’re going gency and humanitarian response before and after a to have our offices in London, because you can move crisis hits, through sustainable development programs. towards Europe and the U.S. easily. First ladies can share what they’ve been doing and their findings, when • Second, there is an urgent need for disability to be they are attending the United Nations sessions or the taken into consideration throughout all phases of human- Shaffallah Forum. That’s the idea. itarian assistance. All humanitarian actors should ensure that emergency preparedness, response and recovery Cooper: Do you have a mission statement yet? programs are inclusive, rights-based and respond to the needs of persons with disabilities. Ali Bin Ali: No, because we’re just getting started. We wanted to create awareness concerning refugee camps,

22 ABILITY in general, and to the appalling conditions in which peo- ple with a disability are living, specifically. I’m sure that you’ve seen the documentaries on Uganda and on the Palestinian camps. We really want to identify and address the problems. This is one of the missions of One Billion Strong.

Cooper: Was One Billion Strong your first choice for the name of the organization?

Ali Bin Ali: We considered a few names like D.A.R.E., but then we found out that there is a drug progtam with that name. Then someone else came up with For Me, Education For Me, Disability For Me, and that didn’t work either, because if you asked for support, you would have someone writing you a check that says, “It’s for me,” which was really funny. (laughs)

Then when the 2011 World Health Organization report came out, and said that there are more than one billion people with disabilities, someone came up with the idea: “Why don’t you call it One Billion Strong?”

Cooper: I just thought of a possible name! You can call it Citizens with Ability for Social Humanity, and they can make the check out to CASH.

Ali Bin Ali: (laughs) That would be funny. Ultimately, we went with One Billion Strong, and we are now working on a few programs. As I said, the first one is the refugee issue. We are drafting a mission statement, and we have a brochure. L to R: Dr. Khalid Bin Jabor Al-Thani, Hassan Ali Bin Ali, a Shafallah student and Her Highness Sheikha Mozah Bint Nasser Al Missned Next we’ll focus on what we call the Signature Pro- gram. And because the rules of the Convention for the Cooper: So you may work and partner with other NGOs Rights of People with Disabilities (CRPD) takes up five within the different countries? volumes, we condensed them into a manual that every- one could understand; next we’re going to translate it Ali Bin Ali: Definitely. The idea is to work with other into 10 languages, including Mandarin, Japanese, and NGOs. We’ll try to work with as many of these organi- Braille, too, so that people who are blind will under- zations as possible, so that we can make a difference in stand their rights under the Convention. the lives of the one billion.

Cooper: Will the programs be web-based, so you can Cooper: Sometimes NGOs worry about working too access the condensed version online. close with other NGOs, because they fear losing funding to the other organization. Ali Bin Ali: Oh, yes. Ali Bin Ali: We don’t think in those terms. We want to sit Cooper: In your opening remarks you mentioned that with other NGOs and other organizations and determine you’re working with the first ladies of different countries; how we can work together. Because sometimes one is can you expand upon that? working alone, and working together is more effective.

Ali Bin Ali: Together, we’re looking at a range of Cooper: I was thinking you could produce other humanitarian issues, like refugees or poverty. We will forums like this, where you go to a region and there’s sit with the first ladies and help to prepare them. We can an invitation to regional NGOs. You could have One identify their need for training, and possibly bring their Billion Strong events in different parts of the world. team to train here in the center, or a team from here could go and train their team where they live. We’ll talk Ali Bin Ali: Someone did suggest: “Why don’t you about different issues. We’ll identify what sort of cen- have a forum in Paris, and one in London, and one in ters or establishment they need, and maybe we can build the next place… Their suggestions are well-taken, and some units for them and give it to them to take care of. we’re looking into them.

ABILITY 23 Cooper: How did you initially get involved with the is news. This is good news. Shafallah Center? Cooper: Twenty-two years I’ve been doing this, and it’s Ali Bin Ali: Eleven or 12 years ago, Her Highness asked still amazing how hard it is to get people to—unless they me to chair the center, when it was a smaller organization. have a family member or they’re connected—

Cooper: Did you have any connection to its mission? Ali Bin Ali: —with the issue. If they are, then they will do something. If not, they ignore it completely. Ali Bin Ali: I had been working with the Paralympics, and was the vice chairman for the Arab Federation of Cooper: As you adopt your goals for One Billion Strong, Sports for the Disabled. And perhaps someone advised do you give much thought to employment issues? Her Highness: “You have a man who has been working there, why don’t you use him?” I’m a businessman, but Ali Bin Ali: We do. By law here, 2 percent of the employ- I do this as a volunteer. ees of any organization in Qatar must be a person with a disability. Because when an abled person and a disabled When Her Highness first asked me to become involved, person go for the same job, the interviewer thinks maybe I thought it would take a few hours of my time, but the disabled should have the job, but he goes for the abled now it takes all of my time. I’m lucky that I have a person because he is worried about accommodations, daughter to run my business, so I can focus on the and he has to provide accessibility, the right atmosphere Shafallah Center. I find it satisfying, and I’ve always and environment. And this is where the problem is. believed in philanthropy. Businesses are obligated to hire the disabled, and In addition to our division for children with special obligated to modify their facilities to accommodate the needs, we now have the capacity to include children disabled. We also want to put in place rulings so that who are blind. We also partner with Best Buddies, and new buildings and the pavement around them will the top 10 genetic centers in the world. allow access for people with physical disabilities.

Cooper: I was impressed by your opening remarks at Cooper: You’re just now writing your disability laws? the forum, where you said that countries need to take a more aggressive role after signing the CRPD. Ali Bin Ali: We are a young country.

Ali Bin Ali: You have 153 countries that have signed, Cooper: So are we. (laughs) Is there anything within the but signing is not as important as ratification, so that the mission of One Billion Strong that explores employing CRPD becomes a law. Today, Finland has cleared the people with disabilities? way to sign, so we have 110 nations who have signed and ratified the Convention, which is great; it means Ali Bin Ali: We plan to address many employment that they have to implement what’s in it. Now Ron issues. So far I’ve only mentioned two of our 10 pro- McCallum, of the CRPD, will have to start monitoring grams, including the refugee camp and the signature and reporting his findings to the United Nations. program. A third is our program with the International Paralympic Committee (IPC). As you know, the Para- Cooper: Do you know which country was first to sign? lympics are in London this year. We thought that we’d work with them, and give them cameras for the athletes Ali Bin Ali: I think maybe Cuba. China was one of the who are traveling to the Olympics and Paralympics. first, as well. As I mentioned, more than signing, it’s the spirit of implementing the rules that matters most. Tom Coyne: There are 168 countries participating, so we’ll give a camera to each one and they will monitor We have to talk and create awareness and reach out to and show their experience as they go through the airports, the media. For instance, in Beijing, after the Olympics, on the plane, when they land in London. the Paralympics were two weeks later. But most of the media closed down and left; they didn’t show the Para- Ali Bin Ali: Or the connection. lympics. They stripped it out, which is not right. They should have given the same opportunity to the disabled Coyne: In other words, under the UN Convention on the athletes as they did for the abled athletes. Rights of Persons with Disabilities, the right of travel is an issue, especially airports. So we will record that. Cooper: Don’t you think it’s a financial decision? Ali Bin Ali: Yes, and then we’ll edit it and show their Ali Bin Ali: Possibly but BBC2, for instance, they tele- experiences, their disabilities, the funny side, the sad side. vise the Paralympics. But NBC, which makes large profits off the Olympics and Paralympics, chooses not Cooper: Human interest stories. to televise it. This is what we want the media to cover. It

24 ABILITY

Coyne: We hope to show the documentary in London, with disabilities are left behind. There is no plan for them, and to use the Paralympic Games there to promote One and so communities are not prepared. Most people with dis- Billion Strong. The IPC is not known for supporting dis- abilities won’t need medical care unless we fail to plan. ability generally. They provide elite sports, but Mr. Has- san, who is an honorary IPC board member, will use his The first year of the forum we focused on research; the position to spread awareness. second year on education; the third year on sports; the fourth on rights; and this year on disability in crisis. Cooper: Do you go to the UN regularly? This forum has its finger on the pulse of the issues affecting people with disabilities. Ali Bin Ali: I go to the UN CRPD sessions. I go to Gene- va, and the last time I was there, I met Ron McCallum Sultan: Conferences or forums are often critiqued on and we talked about this initiative in general, and what engaging in a lot of discussion with a lack of follow up. we can do to make conditions better around the world. How can we focus on implementing ideas discussed at the conference? You can issue a law or a convention, but you have to translate it on the ground. People in Africa, for Roth: Shafallah is including and integrating not only instance, will say, “Fine, you are giving us these laws, people with disabilities, but everyone in the communi- but how are we going to carry them out? Who is going ty. These projects are not simply or separately focused to implement them for us?” So we really have to start on people with disabilities or focused on people of thinking of children and families involved, and get this region—they have a global focus. It brings togeth- them the right care. er different communities.

Zainab Sultan, of Northwestern University in Qatar, Sultan: I see that you are focused on integrating differ- worked with Forum organizer Brown Lloyd James, ent communities, but given that the population of peo- to interview several speakers, here are two: ple with disabilities in Qatar is a smaller community, do you think that it will be overshadowed by other com- MARCIE ROTH munities elsewhere? Director of the Office of Disability Integration and Coordination, Federal Emergency Management Agency (FEMA) Roth: I think it has been overshadowed in the past, but won’t be in the future. Forums like these will work as Zainab Sultan: Is this your first time at the forum? antidotes. The way to turn things around is by telling people what’s happening globally. I am excited that Marcie Roth: Actually I’ve been coming to the forum there are people who are expanding and are inclusive. for the last four years, so this is my fifth time. When I came for the last forum and I was at the Souq (shopping Sultan: The focus of this conference has been very inter- area), my phone kept ringing and I did not want to take national or on countries outside the region. What do the call, as it’s expensive when you are on ‘roaming.’ you think about that? But something in me told me to answer the call and when I did, it was the White House, asking me to come Roth: In almost every corner of the world the notion of work for them. So Doha is a really special place for me. inclusive preparedness for people with disabilities is a new idea. Historically, we have thought “people with Sultan: What is your impression of the forum? special needs” are vulnerable. It is not just that a dis- ability makes you vulnerable, but it means that your Roth: The leadership of Hassan Ali Bin Ali and Her community has a plan for you in a crisis. Highness Sheikha Moza has taken the world by storm. They not only focus on disability, but on the rights of Sultan: There has been a lot of talk about collaborating persons with disabilities. Shafallah is a global pioneer with media to bring out stories that could change per- because of the inclusive practices shared between com- ceptions about people with disabilities. But when there munities. It is wonderful for us to keep this dialogue are new stories making headlines every day, how can going. It gives us an opportunity to think differently we keep the focus of our audience strong, especially about people with disabilities. with donors?

Sultan: How do you think the forum has evolved in the Roth: We need to hold the attention of everybody, and last five years? everybody needs to plan this together. When we see media as a partner, and when we all work together, the Roth: It has been wonderful to watch each step of the way whole is better than the sum of the parts. as Shafallah has brought together global leaders giving people a forum that no one else has. This is not happen- ELIZABETH DA SILVA ing in other parts of the world. Globally there are emer- Executive Director, Disabled People’s International gencies and disasters happening everywhere, and people

26 ABILITY Madalaine Boregio, Portugal Photo courtesy of

Doha’s ever changing skyline; a picture taken from the Corniche walkway

Sultan: Have you ever been to Qatar before? Sultan: What were some of the highlights for you at this year’s conference? Elizabeth Da Silva: This is my first time; Doha is beau- tiful. Personally, I think it is the most beautiful city in Da Silva: I think the theme was brilliant, and many peo- the world, and I’ve traveled all over. ple are not paying attention to this topic so it’s great to be hosting something like this. I have met with some Sultan: What makes Doha so beautiful? amazing people from so many different parts of the world, including some people from Haiti whom I’ve Da Silva: It’s bright and has the snazziness of Los always wanted to work with, but never had a chance to Angeles, and yet it’s so clean. It’s also calmer. meet face-to-face.

Sultan: What were some of the things that really stood Sultan: What changes or recommendations would you out for you at the forum? give for the next forum?

Da Silva: The Shafallah Forum has done a great job in Da Silva: I think we should move on to the next phase inviting a diverse group of people, and yet everybody where we can merge the UN’s Millennium Develop- ment Goals with the CRPD goals and work together. said the same things over and over again. They were Creating partnerships at an international level is talking about what was wrong and not focusing on rec- extremely important. ommendations. Many people placed too much emphasis on defining disability, and maybe we should try and dpi.org look at cross disability. fema.gov paralympic.org Sultan: When there are new natural disasters or con- shafallah.org.qa flicts making the headlines every day, how do you avoid donor fatigue?

Da Silva: There is still a lot of focus on Haiti, but even after two years there is still a lot to be done. You want to help everybody, but you need to measure who has the structure and who doesn’t and what is the magnitude of Chairman Hassan Ali Bin Ali help that is needed.

ABILITY 27 hristopher Wells is a can-do kind of guy. atoms; they can be metallic or semiconductors. Recently he graduated from the State Uni- versity of New York at Albany with a PhD Mackin: What would you use them for? in chemistry. Deaf and legally blind as a result of nerve damage sustained when he Wells: They are great electricity conductors. They was born two months premature, he grew up to be a top- have excellent tensile strength, and they can be good notch student, and even interned at the NASA Goddard capillary tubes. Space Flight Center in Maryland. He plans to use his degree to teach, conduct research or serve as a consul- Mackin: Capillary tubes? Like blood vessels? tant. ABILITY’s Molly Mackin conducted her interview with the scholar via text message, the easiest way for Wells: Yes. They can draw liquids or other substances into him to communicate. their interiors, and multiple tubes can act as bearings for nano-motors. They slide past each other with great ease. Molly Mackin: Congratulations on receiving your PhD. What is it you like so much about chemistry? Mackin: Sounds like robotics.

Christopher Wells: Chemistry is one of the central sci- Wells: That’s how some of us are trying to use nan- ences—along with physics and math—that have proven otubes. My current research is not in that area, but in to be great areas for me. I feel in harmony with atoms carbon electronics, where the nanotube is rolled out and molecules; their diverse compounds and structures flat into sheets. I’m especially interested in control of come naturally to me. material properties via atom-atom interactions.

Mackin: You make chemistry sound poetic. I was a hack Mackin: Everything is going well for you these days, at math, but I loved mixing potions in chem lab. Your but you started out with some real challenges. studies involved something called ‘nanotubes.’ What are those? Wells: I was born premature by two months, and my birth parents, who were really young, found themselves Wells: Nanotubes are carbon structures that look like overwhelmed by my disabilities. They placed me with tubes. They are hollow cylinders made up of carbon my foster family, which later adopted me.

28 ABILITY Mackin: At what age were you adopted? closed. But it once was great for special-needs kids, helping us learn to socialize. Wells: I was a foster kid from 4 years old, and then my family adopted me when I was 7. I have two godsisters: During a visit to Kendall School for the Deaf in Wash- Dani, who is 20, and Kate, who is 15, and an adoptee ington, DC, I decided I wanted a “regular” education. like me, only she is from Romania. I also have a broth- Finding that seventh-grade students there were learning er, Bobby, who is 20, and deaf like me. My two god- about farm animals, made me realize there were chal- mothers, Pat and Sally, were college friends of my lenges far outside special education, so I requested to mother, and my godfather is Larrie. All my guardians enter elementary school in third grade. work at an agency and school for special needs kids. Mackin: You did well there? Mackin: Are you still in contact with your birth parents? Wells: Yes, I excelled in “regular” education, and ended Wells: My birth mother, one sister and I are in touch on up as valedictorian of my high school with a 92 average! Facebook now! They are real proud of my achieve- Our class was very competitive. There were a lot of smart ments. They never regretted their decision to let me go kids. I skipped two grades in math, and one in Spanish. to my new family. In the transitional period, my birth mother got to see me thrive with my godparents. Mackin: Where did you apply to college?

Mackin: How was the transition? Wells: Siena College; RPI; Union College; SUNY Albany, and SUNY Adirondack, all of them are in locat- Wells: Smooth. I learned sign language and developed a ed New York. thirst for knowledge. It challenged my guardians to think about what I could do, rather than what I couldn’t. Mackin: Where did you get in?

Mackin: What early schooling did you have? Wells: I got into all of them! I visited four out of the five, and won a presidential scholarship to Siena College for Wells: From kindergarten to second grade, I went to San- all four years! I had also won a scholarship to RPI, but ford Street School in Glens Falls, NY, which recently my uncle, Michael Wells, had attended Siena before, as a

ABILITY 29 math major. Later, I did my graduate studies at SUNY Albany. All of the colleges I visited never had a student who was both deaf and blind before. I was a pioneer.

Mackin: Did you know what you wanted to study going in?

Wells: Yes, since high school I’ve wanted to study chemistry.

Mackin: While we’re on the subject, do you have time for a girlfriend amidst all this work?

Wells: Well, I was real busy with my research and so focused on my work, that if I had free time, I used it to read up on topics that would help me. That was how I became so knowledgeable. I do want to look for a girl- friend, now that I am free and on academic break.

Mackin: I’m sure you will find each other in perfect time. You said your godsister is Romanian; what is your ethnicity? Mackin: You have partial vision; do you have partial hearing, as well? Wells: My biological family was German, however, my experiences with society run parallel to those experienced Wells: My hearing works, but it is so bad that I am often by African-Americans, so I have a natural affinity for in an aura of silence. black people. Both people who are deaf and black people have had their families ripped apart, and defined modern Mackin: Do you use hearing aids? cultures via peer interactions before gaining ground. Wells: I used to, but not anymore. Sound does not help Mackin: That’s an interesting insight. You’ve dealt with me now. I ditched my hearing aids in high school. being both deaf and blind, what was communication with your school peers like? Mackin: That’s rather rebellious of you.

Wells: I first learned that sign language was a great Wells: I have always been aware of what society did to friendship builder! I also started to diversify my tech- deaf or blind people in the past. It tried to make them niques, so I could become more independent and interact assimilate and gave them a substandard education, with many people, not just classmates. My interactions which made integration hard. I have done much to ease helped me define the ideal relationship style of symbio- this process, and even blazed new paths for people like sis. I would like a relationship where we empower each myself to follow. I am a ‘black swan.’ People did not other and strengthen both our bodies and souls as a team. think I could do this, yet I am here, completely unabated by their opinions or experiences. Mackin: Do you have a job lined up? Mackin: Did you always have such confidence? Wells: Not yet. My village has no place for a chemist or a PhD. SUNY Albany has openings, but they’re not right Wells: Yes, from birth! I was a medical miracle in 1979. for my expertise in inorganic chemistry and applied quantum theory. My village is a tourism industry. Mackin: How so?

Mackin: I grew up in upstate NY, and we sometimes Wells: I refused to let what doctors thought about me vacationed in Lake George, so I understand. influence my outcomes. I loved to prove experts wrong at every turn! I was born two months too early and suffered Wells: Yes, it’s real nice! some nasty brain damage as a neonate. That made doc- tors believe I would have cognitive disabilities. Boy, were Mackin: Where else are you looking? they wrong!

Wells: I like cities and campuses, so I have been looking Mackin: That’s a pretty unique perspective—to think of to relocate. I am willing to try out new environments yourself as an activist from birth. and build new social circles. Wells: Yes, I was born to be different!

30 ABILITY ABILITY 31 Johnson: What direction do you give them regarding protection of workers, diversity and enforcing the law?

Shiu: We’ve hired and trained 200 new compliance offi- cers, and we’re engaged in further training both at the intermediate and advanced stages. There are also inter- im trainings that we provide people on regulations and new development.

With respect to disability issues, I don’t know if you know this, but prior to this administration, there had really not been much attention paid to enforcing section 503 of the Rehabilitation Act, which is one of the laws that we enforce, because 25 percent of the American workforce works for federal contractors.

When you think federal contractors, you think big com- panies. It’s really important that we ensure that we are opening doors for everybody, including people with dis- abilities. And of course that means that places have to be accessible. So we’re working a lot to try and provide ithin the US Department of Labor, Patricia A. what I call the three-dimensional equal employment Shiu directs the Office of Federal Contract opportunity philosophy and affirmative action. Compliance Programs (OFCCP). Her team makes sure that contractors who do business with the federal govern- I find that every workplace tells a story. It may not be a ment adhere to affirmative action and equal employment story of discrimination, but it may be a story where opportunities for both job seekers and wage earners. there’s some mismanagement going on. I want to make sure that my compliance officers are steeped in the law, Recently, OFCCP proposed new rules that will compel and understand how to investigate cases with a real eye contractors and subcontractors to set a hiring goal of 7 towards accuracy, thoroughness and completeness, so percent for workers with disabilities. Shiu discussed the they can serve the American people and ensure that changes on the horizon with ABILITY’s Pamela K. there’s no discrimination going on. Johnson and Stan Hoskins. Johnson: When and why did you hire the 200 compli- Pamela K. Johnson: I see that you worked as an attor- ance workers, and does that mean that your staff is ney and a litigator. How would you sum up your back- actually closer to 1,000 now? ground before you joined the OFCCP? Shiu: It’s actually around 750. The 200 compliance Patricia A. Shiu: My first law job was working as a law workers were hired when President Obama was elected, clerk for Arlene Mayerson, who as you know is one of because of his commitment to civil rights. Those 200 the leading advocates for the disability community. As a employees had been essentially laid off over a number civil-rights litigator advocating for the working poor of years, and they were backfilled. and their families, I worked on disability discrimination cases, and class action cases—some against the San Between the OFCCP, the Equal Employment Opportu- Francisco Unified School District. nity Commission and the Department of Justice, we are working together as one federal civil rights government At one point there was not even one totally accessible on one civil rights agenda, which hasn’t been done for school in all of San Francisco. I also worked on class- almost 50 years. We share resources; we cross train; we action lawsuits against UC Davis and UC Berkeley on talk to each other—and I don’t mean at just the top lev- behalf of hearing impaired and visually impaired students. els; it goes on at our compliance officer level and I have a commitment to this area of civil rights. investigator levels, as well.

Stan Hoskins: How do you manage a staff of 800? Hoskins: Why is it necessary to update the federal con- tractor rules dealing with recruitment and hiring of Shiu: I have an excellent team in the national office, and people with disabilities? extremely talented regional directors and deputy direc- tors throughout the country, including our compliance Shiu: They are sorely out of date, and to be quite hon- officers who are the heart and soul, I think, of the est with you, they have focused on good-faith efforts OFCCP in terms of their commitment to Labor Secretary for affirmative action and process-oriented steps that Hilda Solis’s vision of good jobs for everyone. federal contractors could take to increase the number

32 ABILITY of people with disabilities. But I think the numbers show that over the past 40 years, people with disabili- ties have among the highest of unemployment rates, and it’s time for us to get serious about this.

Good-faith efforts haven’t worked. What gets measured gets done. This is not something new in terms of the goals that we’re setting, which of course are aspirational but enforceable—enforceable because we can enforce the actions that are taken or not taken with respect to getting to the goal. These are the sort of things that we’ve done to measure progress with regards to race and gender for many, many years.

We’re opening the doors for federal contractors who, up to this point, have really not taken advantage of all of the skills and experience and expertise that people with disabilities can bring to the workforce.

Hoskins: Are there any indications that some contractors are skirting the existing rules?

Shiu: Yes. There is some evidence of that. When there is fear, when there is ignorance, it makes it very difficult. I’ve represented a lot of people with disabilities, and quite frankly, there are some jobs that not all of us can do, but for the most part, people with disabilities can do the bulk of the jobs that are available, usually with some reasonable accommodation, or even without reasonable accommodation. So the days where people assume that somebody can’t climb a pole because they don’t have a limb, well that’s the Dark Ages. Patricia A. Shiu

There are contractors who are committed to doing this, to make the effort to do it. You’ve got to be committed including the Organization on Disability, which is a to it. You’ve got to measure what you’re doing, figure consortium of very big federal contractors, including out where you’re falling down, and fix it. Our ultimate Sam’s Club and others. When the regs came out, they sanction is debarment. actually wrote a press release talking about how sup- portive they were of the goal. So I think when you But we’re here to provide technical assistance to con- have contractors who understand the objectives, and tractors. They don’t have to pay an expensive consultant who have a commitment to changing the culture, then in order to figure out what they need to do; we have things can happen. almost 800 employees who are ready to help them. They can call us. We don’t retaliate against people who call us Hoskins: What type of penalties are in store for contrac- and ask us for advice. We really are very receptive to tors who don’t adhere to the rule? people who need the guidance, particularly small busi- nesses, small contractors and new businesses. We don’t Shiu: There are a number of specific steps that we’re want them to have to try and understand the regulation requiring of contractors, including data collection, and by themselves and navigate through it; we’re here to recruitment efforts, as well as measuring those efforts, help them succeed. along with retention. And it’s all of those tasks, includ- ing the measurements, that are going to be subject to Johnson: What is the process of a proposed rule being investigations and audits. So if contractors don’t under- adopted? take any of these specific, mandatory steps, they can be subject to violations. Shiu: We actually gave advance notice of the proposed rule because the regulation was so old, and because I It’s important to look at the goal as something that you didn’t feel like OFCCP had really engaged enough with want to reach. But even if you’ve reached the goal, that its stakeholders. We submitted an Advanced Notice of doesn’t mean there isn’t more that could be done. And it Proposed Rulemaking, asking a number of questions, doesn’t mean that people who do everything and who and then we went around the country, literally, and don’t reach the goal aren’t successful. But you have got spoke with stakeholders about their thoughts, their ideas

ABILITY 33 about this regulation, including what’s worked in the “How can somebody with a disability operate heavy past, what hasn’t worked and best practices. machinery?” I said, “Well, actually, I worked on a case involving deaf individuals who worked with forklifts in Based on the feedback, we’ve come out with a Notice of big box stores.” Proposed Rule, and then we gave people a comment period, and now we’re looking at all of the comments, So it’s shattering some of those myths, those stereo- taking them all into consideration, before we put out a types, I think. That’s just a matter of education and Final Rule, which then becomes the law. exposure. If you’ve ever known or worked with a per- son with a disability, you will see that they’re just like Hoskins: When the rule is updated, do you expect to see anybody else. an increase in the number of people with disabilities finding employment? Hoskins: Are you frustrated by the pace of change in regards to inclusion of people with disabilities? Shiu: From your lips to God’s ears. (laughter) Yes, I do. That’s the whole point of this. Shiu: I am hopeful. It’s been a real pleasure and a privi- lege for me to work for this administration. I come to Johnson: And how will you verify that companies are the office every day knowing that we’re going to make complying with the new rule? good on this. This is a game changer. Secretary Solis has said that she thinks this is the biggest change since Shiu: We have a three-part process: We schedule approx- the enactment of the ADA, and all I know is that I just imately 4,000 audits. It’s a neutral selection system. We want to play a small part in making sure that this go in and we tell people that we’re going to audit them. becomes a reality. They have certain duties as a federal contractor. When they sign on the dotted line to make that widget or make Johnson: Senator Harkin has a goal to have six million that ship or provide pharmaceuticals, they agree to not people with disabilities employed by 2015. Does your discriminate and to engage in affirmative action, which office ever work with his office on these initiatives? means that they have to have an affirmative action plan. Shiu: We work with Senator Harkin’s office whenever You’re supposed to keep data, update it, and actually we can. He’s a great advocate on all issues for work- look at it. It should affect how people get hired and ers, and he’s committed to getting as many people with employed and paid. Very often the affirmative action disabilities as possible into the workforce. plans are not used to the best extent that they could be. But it’s that sort of information that we unearth and ana- Johnson: How do you broaden out what’s happening at lyze. We do onsite audits as well. We talk with witness- the federal level in terms of contractors and subcontracts es, we talk with corporate people, workers, manage- to other companies through America? ment, etc., to really try and unearth, as I said, the story at that particular workplace. Shiu: The history of OFCCP started with President Roo- sevelt who issued an order that prohibited discrimina- Johnson: Anecdotally speaking, as you went around tion by federal defense contractors against African- the country looking at these various businesses, what American people. Think about all the various Republi- challenges did they face in complying with the rule? can and Democratic administrations that have built upon that principle. Shiu: One thing I can say is that there are a number of very large contractors that stood out in terms of taking The federal government is always the model employer, this to the next level. Michael Reese Hospital in and it always should be the model employer, which is Chicago has a lot to be proud of. They had people why the President has also challenged federal agencies there who took the time to share with other federal to hire more people with disabilities. contractors what they do in their hospital so that peo- ple are included. And they had exuberance, great When you talk about federal contractors, you’re talk- ideas, and commitment. They are now in the lead in ing about Boeing, about pharmaceutical companies, terms of inculcating the notion that all people, includ- about poultry companies, meat companies, meat pack- ing people with disabilities, can be productive workers ers, furniture companies. It’s everybody. All you have in that particular environment. to have is a contract for $50,000 and 50 employees and you’re subject to affirmative action. If you have a I also see a whole range of people who have never contract of $10,000 and 50 employees, then you’re worked with someone with a disability, who have no subject to the executive order. So there are some dif- understanding of what that might mean, and who exhibit ferences in terms of some of the other regulatory juris- a certain amount of fear and ignorance. On one of my dictional limits, but essentially the idea is, if we can do webinars, I got a call from a person who said that she this for one in four American workers, it’s going to runs a small construction company, and she asked, have a ripple effect.

34 ABILITY

Senator Tom Harkin

he Office of Disability Employment Policy (ODEP) She cited efforts between the Bureau of Labor Statis- recently celebrated its 10th anniversary with more tics and ODEP to collect statistical data on the employ- Tthan 200 beneficiaries, staff members and policy ment of people with disabilities, as well as the creation leaders joining in the events at the department’s Washing- of the Job Accommodation Network, Workforce Recruit- ton, DC, headquarters. ment Program, and the “Add Us In” initiatives, as exam- ples of ODEP’s leadership in working to improve job “The conversation has shifted away from whether peo- opportunities for individuals with disabilities. ple with disabilities can work, to what tools and sup- ports are needed to assist them in doing so,” said Secre- Most recently, Solis announced her hearty support of a tary of Labor Hilda Solis, reflecting upon the agency’s proposal by DOL’s Office of Federal Contract Compliance evolving mission. Programs that would revise Section 503 of the Rehabilita- tion Act of 1973, which governs the affirmative action ODEP is under the auspices of the United States Depart- obligations of federal contractors and subcontractors. ment of Labor (DOL), run by Solis, and supported by staff members Seth Harris, deputy secretary of labor, Under the revised rules, contractors and subcontractors and Kathleen Martinez, assistant secretary of labor. with 50 employees and $50,000 or more in government contracts would obligated to set a hiring goal for workers Senator Harkin (D-IA), Congressman Steny Hoyer (D- with disabilities with a target of 7 percent. MD) and a number of other prominent disability rights advocates attended the event. Becky Ogle, the executive This is a significant, concrete step when federal contrac- director of the former Presidential Task Force on tors and subcontractors account for approximately 25 Employment of Adults with Disabilities was there, as percent of the nation’s workforce. The proposal would were former U.S. Congressman Tony Coelho, the pri- also clarify what is expected of businesses in regards to mary sponsor of the Americans with Disabilities Act; employing people with disabilities and encourage Kareem Dale, the special assistant to the President for businesses to comply with their legal responsibilities. Disability Policy; and former assistant secretaries of labor for disability employment policy, W. Roy Grizzard Hoyer applauded ODEP’s accomplishments, and said and Neil Romano. that its programs help individuals with disabilities find meaningful work: “Opening up work opportunities, Solis reiterated her goal of “good jobs for everyone,” including internships and training programs to those including people with disabilities. On the DOL’s offi- with disabilities, will not only serve the interests of cial blog, Work in Progress, she noted, “In the decade justice and equality, but also enable businesses, non- since joining the DOL family, ODEP has been chal- profits, and governments to tap into their talents, skills lenging outdated stereotypes and attitudes that keep and energy.” people with disabilities out of the workplace, while by Bogdon Vitas aligning policy and practice to open the doors to employment opportunities.” dol.gov/odep

36 ABILITY ABILITY 37 Andrew Shelley’s journey stretched over several months, and included unpredictable adventures in India, Cambodia, Thailand, New Zealand and the United Arab Emirates.

38 ABILITY hen Andrew Shelley decided to quit his job Zimmerman: What inspired you to make Beyond the and backpack around the globe, he didn’t Chair? plan to have cameras tag along. But his friend Dusty Duprel realized that Shelley’s journey could make Duprel: After we had been roommates for a year, Drew a powerful story. So the first-time director/producer decided that he was going to travel around the world. At pulled together the team to shoot, edit and produce the first, I didn’t think it was such a big thing, because I 91-minute film Beyond the Chair. know him and his personality. But after I told my friends about what he planned to do, they said we should make a The documentary follows Shelley, 29, as he leaves a suc- documentary about it. cessful engineering career to set off on an adventure, despite his family’s concerns for his health and safety. While filmmaking is the only thing I ever wanted to do, Born with a progressive muscular degenerative disease initially I wasn’t interested in documentaries at all. But that required his use of a wheelchair before age 25, Shel- this was a good learning experience, because you can ley was excited to challenge the limits of his new all-ter- make a lot of mistakes and correct them more easily in rain power chair, the Frontier X5. a documentary than you can if you make them in a fea- ture film. The journey stretched over several months, and included unpredictable adventures in India, Cambodia, Thailand, Chasse: Intention Media really liked the film, by the New Zealand and the United Arab Emirates. way, because it doesn’t feel like a documentary. It has a cinematic element to it that you don’t oftentimes find in The film’s distributor, Betsy Chasse of Intention Media, is a conventional documentary. an industry veteran who’s worked on more than 30 films. She made the hit documentary What the Bleep Do We Duprel: We wanted it to have a narrative feel, so we mod- Know!? It was narrated by Academy Award winner Mar- eled it, to an extent, after Murderball [an award-winning lee Matlin. film about paraplegics who play full-contact rugby in wheelchairs], which was a great film that didn’t play like Before the recent premiere of Beyond the Chair, David a documentary, either. S. Zimmerman, actor and founder of Meet the Biz, which offers workshops for entertainment professionals, To incorporate the theme of the hero’s journey, we interviewed Shelley, Chasse, Duprel and director/pro- researched and read a lot of Joseph Campbell books and ducer Rachel Pandza in Beverly Hills, CA. watched PBS specials. We saw that Andrew’s story was naturally the classic “hero’s journey.” Zimmerman: Dusty, how did you and Andrew meet? Zimmerman: Andrew, did you ever think your life would Duprel: We met through a Craig’s List ad when we were be the subject of a documentary? both looking for roommates. We were roommates first, and then we became friends. Shelley: No. When Dusty first said it was going to be a film, I thought, “What is there to show?” I had no

ABILITY 39 idea that it might be a story that people would want to Zimmerman: While you were filming Beyond the Chair, see. what was the highlight of the journey?

Duprel: Maybe a month into it, Drew goes, “When you Shelley: Probably the suspension bridge in Thailand, said we were going to make a documentary, I knew it which was held together by bamboo and coat hangers, was going to be about me, but I didn’t realize it was and leaning to the side. I didn’t know if I should wear going to be so much about me.” my seatbelt or not. If I had my seatbelt on and I fell, my wheelchair would go off the bridge, and I’d go with it. Zimmerman: I can see how that might be overwhelming, If my seatbelt was off, then I might possibly stay on the and also how transporting several people around the bridge if the chair went over. So I rode halfway with the world must have presented a fair share of logistics. How seatbelt on, and halfway with it off. big was your crew? Chasse: 50/50. I love that. Duprel: There were about four people on the shoot: Rachel, me and then Patrick Guera. Halfway through Duprel: This old bridge was about 100 feet above a river, Patrick had to go home, so we flew Zachary Borman to and I didn’t feel safe walking across it. It was even more India. It just worked out that when we were in Thailand, dangerous for Drew, as there was a legitimate concern we had to hire a coordinator, Arthit Kimakhom, to work that it would collapse. with us, so he became like the fourth person in Thai- land. And then throughout the editing process, we had Zimmerman: Glad that everything worked out. So quite a few people helping. Rachel, at what point did you become involved with the project? Initially, Rachel and I edited from January to June, and we barely even scratched the surface of 360 hours of Pandza: We were all friends with Dusty at San Diego footage. So then we had Alex Bridgman, with whom we State, and he introduced us to Drew. went to school, fly to South Dakota, and we all moved into an apartment together. We would edit all day, go to Zimmerman: And you went to San Diego to learn how to bed, wake up, and edit all day again, throughout the produce films? summer. So Alex was our second editor, and then we brought Erik Puhm, who was also a college classmate, Pandza: The school was more for all-around production. and finally Tina Imahara, who came in and did the last Everyone learned every single role. pass. Duprel: Rachel and I had many of the same classes Chasse: Tina was the editor on Fuel, which was another together, and we were really good friends. Intention Media movie [about solutions to America’s addiction to oil]. I first heard about Beyond the Chair on Pandza: The other two cameramen and our editor were Tina’s Facebook page. When we first screened Fuel, we all friends from San Diego State, as well. didn’t think it was an Intention Media movie, in terms of what we usually distribute. But the more I watched it, Duprel: They were like 90 percent of our crew. the more that I appreciated that it was a spiritual, uplift- ing film. If you think about Intention Media’s mantra— Chasse: Were there any scary moments during the shoot? achieving social change—then that’s what this movie is. Duprel: One time, Drew got thrown out of his wheel- Zimmerman: Even social change within oneself. chair and had to go to the hospital [in Cambodia]. We filmed there, even though we weren’t supposed to, and Chasse: Exactly. then we got caught. At the time, we had film equipment with us that was probably worth a year’s salary—three Duprel: It’s funny, one of the first documentaries I ever or four year’s salary by Cambodian standards. So I want- watched was What the Bleep Do We Know!? ed Rachel to take the expensive cameras and go back to our hotel with these two Cambodian men that we didn’t Chasse: When we first released What The Bleep, we did- know. n’t have a distributor. We did it ourselves. After we’d played in about 20 markets, we signed on with Samuel Pandza: They weren’t total strangers; they were tuk tuk Goldwyn for distribution. After Bleep, I was sent hun- drivers who had been helping us for a few days. So I dreds of movies by other indie filmmakers. I had gained took the cameras back to the hotel, and I wouldn’t have a lot of knowledge about self-distribution, and started gone with them if I didn’t feel I could trust them. But Intention Media with my partner Melissa Henderson. We Dusty’s reasoning was that it was dangerous to assume screened so many films that deserved to be seen and that they had good intentions. I guess Dusty thought I given a chance. That’s what Intention Media is all about. was going to return to the hospital after I dropped the cameras off, but because of miscommunication, I just

40 ABILITY Dusty confers with Drew on the streets of Phnom Penh, Cambodia. An experience they had there was the scariest part of the trip.

stayed at the hotel and rested. The tuk tuk drivers Pandza: One of the guys had never been in an elevator returned to help Drew, if he needed it, and to give Dusty before, and he was just like, “Whoa.” a ride back to the hotel. But because they barely spoke English, and weren’t clear about what they intended to Duprel: He didn’t expect it to move. do, Dusty assumed they might have done something to me or with the cameras. Pandza: It was so odd, and you don’t even think about stuff like that—how people in another place may not I think it’s just the perceptions that people have when have experienced even small things like that. they go to a place like that. They just don’t know. The people were actually really nice. You could walk the Zimmerman: Andrew, did you have any money challenges? streets; I almost felt safer than in New York. Shelley: All of the time. Once, in India, I lost my shoes, Zimmerman: Ah yes, perceptions. and my credit card was maxed out, and the ATM machine wasn’t working, so I called my mom, and said: Duprel: The two guys returned the hospital without “I have no money and no shoes.” Rachel, and I had asked her to come back. Zimmerman: Did she send you something? Pandza: But I was tired. Duprel: No, she didn’t. Duprel: And I thought that maybe the guys had killed her and taken the equipment. Pandza: We had a lot for our production budget, but Drew was spending a lot of his own money and at some Pandza: He has a wild imagination. point it was running out, and we were maxing out cards, trying to get as much as we could for all the things we Chasse: You watch too many horror movies. were doing.

Duprel: So I had the guys take me back to the hotel, Shelley: Yeah, I burned up my credit line. But luckily, and I had one wait downstairs, while one came up with when I got home I got a short-term engineering job and me. I was still very paranoid at this point that they paid it off. could have possibly harmed or robbed Rachel, so I asked the smaller of the two to go to the hotel room Zimmerman: Would you do this again? with me. That way if Rachel wasn’t there, I could hold him hostage. Of course, Rachel was fine, and I blew the Shelley: I can’t wait. I’m saving my money right now; situation all out of proportion. I’ve already got enough for my next trip.

ABILITY 41 L-R: Andrew Shelley, Rachel Pandza and Dusty Duprel are interviewed by David Zimmerman. Zimmerman: Would you travel again with a camera crew? Zimmerman: I like that. What about your next project? Shelley: I’d rather not have as much filming. I want to document it, and I want to share my story, but not Pandza: We’re both writing, and Dusty does a lot of as intensely. editing. So we work in production a lot.

Pandza: Even though Drew knew what was going on, at Chasse: I’d like to know what is the one take-away that some point he was like, “I guess I didn’t realize there you got from this journey? would be this much filming of me.” His perspective, which is not necessarily that of a filmmaker, was: Oh, Pandza: It’s that everyone is the same. Even when you we’re going to film all the cool stuff, and that’s going to travel to different cultures, you have all these different be the focus.” perceptions going on about what things are going to be like, and you just realize we’re all the same and we all Zimmerman: Because you’re not an actor. You’re— have the same hopes and dreams and problems. But it all came together, even with the language barrier and all Shelley:—an engineer. our differences.

Zimmerman: Your’re still an engineer? Duprel: What I learned from the trip is that when you take a step forward, the next step will present itself, and Shelley: Sort of. I do graphics now. It’s more creative. I then you’ll find the help you need to take the step after also do motivational speaking and mentoring. that. And you can’t put any emphasis on your limita- tions or fears, because they’re just excuses, whether Zimmerman: Oh, that’s wonderful. What is the plan for you’re in a wheelchair or not. It’s hard traveling around distributing the film? the world, beyond the physical aspect of it.

Chasse: Right now, we’re focused on our core audience. Pandza: It takes the mentality and courage to do it. Intention relies more on a viral, grassroots approach. We The determination. The biggest response we’ve had don’t have a lot of money, for one thing—which is kind from people who watch it is that it’s a kick in the of hard—so we rely more on word of mouth. pants. Why am I complaining about so many little problems, when I don’t have as many problems out- The disability community is also really great at support- wardly as it seems as Drew has? ing one another and spreading the word. And just like with other films that we’ve had at Intention, what even- Duprel: Right. What’s holding me back? tually happens is that there is a tipping point at which the word of mouth starts to take hold. Chasse: That’s exactly why we distributed this film.

And this film, I believe, will cross over to schools, younger kids and families. There’s a really profound Beyond the Chair is available for purchase at: message in here that I think people in general want to btcmovie.com and intentionmediainc.com hear right now: That you can do anything. Anything is David Zimmerman is an actor, casting director, producer and teacher. possible as long as you believe in it. And so to me, For more information, visit meetthebiz.net or davidzimmerman.biz that’s what this film is about.

42 ABILITY CARIBBEAN RUNDOWN (Courtesy of Christy Morgan, author of Blissful Bites)

This dish is sort of like gumbo. In the Caribbean they call it “rundown” because they throw whatever they can find into this tasty stew seasoned with jerk spices. It is wonder- ful served with coconut rice, black beans and plantains.

Serves 4 to 5

1/2 cup water 1 tablespoon chopped fresh thyme 1 teaspoon chopped fresh oregano 1 cup carrots, chopped 2 cups chopped asparagus 2 cups chopped chayote squash 1 tablespoon jerk seasoning n this excerpt from the book Forks Over Pinch of salt Knives: The Plant-Based Way to Health, the authors tout 1 cup chopped collards a meatless diet filled with grains, fruits, vegetables, and 1/2 cup frozen peas legumes—items often relegated to side dishes. If you’re 1/2 cup veggie broth trying to find a way to reduce or eliminate meat from Small can tomato sauce your diet this year, or simply to eat more healthily, these Soy sauce or tamari recipes will provide tasty options for you. Bring the water to a boil in a medium skillet. Stir in SEARED RED LENTIL PÂTÉ the thyme, oregano, carrots, asparagus, chayote, jerk (Courtesy of Anastasia St. John) seasoning, and a pinch of salt. Cover and simmer for 5 minutes, stirring occasionally. Add the collards, This is a fun and delicious way to prepare lentils. It’s a peas, and veggie broth and stir well. Cover and cook great entrée for a special dinner. for 10 minutes, stirring occasionally. Add the tomato sauce, cover and simmer for another 5 minutes. Add soy Serves 4 sauce or tamari to taste and simmer for another few minutes. 1 cup red lentils 3 cups water KATHMANDU STEW 1/2 cup chopped onions (Courtesy of Moira Nordholt) 1 cup chopped cremini mushrooms 1/2 cup raw cashews This mildly curried, mildly sweet red lentil and yam stew 1 garlic clove, minced is satisfying served alone, or with a simple raita made of 1/2 teaspoon sea salt soy yogurt, toasted cumin seeds, and cucumbers. 1/4 teaspoon black pepper 1/8 teaspoon cayenne pepper Serves 4 1/2 teaspoon thyme 1 teaspoon rosemary 1 teaspoon cumin seeds 1 teaspoon cumin powder Bring the lentils and water to a boil in a medium pot. 1 teaspoon fennel seeds Reduce heat and simmer for about 15 minutes, until the 3 teaspoons curry powder lentils are soft. Drain off extra water. 1/2 teaspoon coriander powder 1/2 teaspoon turmeric powder Sauté the onions and mushrooms in a cast iron skillet 1 pinch of cinnamon until browned. Put the cooked lentils, onions, and mush- 2 cups organic red lentils, rinsed rooms into a blender. Add the cashews, garlic, salt, pep- 1 medium sweet potato, diced per, cayenne, thyme and rosemary, and puree until 2 carrots, diced smooth. Spread the mixture evenly over the bottom of 1 medium red onion, diced an 8 x 8-inch glass baking pan and allow to cool. Then 4 garlic cloves, minced refrigerate it for at least 2 hours or until firm. 1 or 2 teaspoons sambal oelek (chile paste) or dried red chiles Cut the pâté into four squares, then brown each side in 4 cups water the cast iron skillet over medium-high heat. Serve Pink Himalayan sea salt immediately. 1 small bunch of fresh cilantro, chopped

answers on page 53 ABILITY 43 Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere

44 ABILITY ope Dworacyzk has been a runway model, a Playboy Playmate and a contestant on Celebrity Apprentice, where she won $40,000 for her favorite charity, Best Buddies. The nonprofit organization pro- motes a volunteer movement that creates one-to-one friendships, employment and leadership opportunities for people with intellectual and development disabilities. ABILITY’s Chet Cooper recently caught up with Dwora- cyzk in Los Angeles.

Cooper: How did you learn out about Best Buddies?

Dworacyzk: From Maria Shriver who invited me to a lot of their fund-raising bike rides. She and I first met at an event at Hearst castle (in San Simeon, CA) and then, about three years ago, Tom Brady of the New England

ABILITY 45 Patriots led one of the rides. It was 100 miles, and went Dworacyzk: Seven days the first week, and then after from Boston to the Kennedy compound in Hyannis Port, that six days a week. I lasted until the ninth episode. MA. I took part in it, and had a really great time that weekend hanging out with a lot of different kids, and Cooper: How many episodes are in a full season? people my age, too. Dworacyzk: Thirteen. Cooper: Older kids? Cooper: So Donald Trump didn’t fire you until almost Dworacyzk: Yes, and I asked if I could have a buddy. the end. How did you win the money for Best Buddies?

Cooper: Did a lot of people raise their hands? Dworacyzk: You win money when you’re project man- ager and your team wins a business task. There are also Dworacyzk: (laughs) When I got back to Los Angeles, I other times throughout the show when you have an called the local Best Buddies. I was matched with a opportunity to win money. young woman named Caroline, and we became friends. She’s now 25, and we go to trendy restaurants, get our I was project manager of an Omaha Steaks task. Because nails done and go to the spa. I don’t eat steak, Donald Trump asked me on-camera, “Are you excited about your task?” I said, “Yeah, but I I like that Best Buddies is about creating one-on-one know nothing about it.” Fortunately, we ended up win- friendships between two people. They help participants ning anyway. with their education, so they can find work. With educa- tion and jobs, many people with intellectual and develop- Cooper: Was this the season with Meatloaf? mental disabilities can live independently. It’s a beautiful program. Caroline has a job assembling handcuffs. Dworacyzk: Yes.

Cooper: I think Special Olympics has a “How to Get Cooper: Wasn’t it controversial because Meatloaf got Out of Handcuffs” event. upset about something?

Dworacyzk: (laughs) When I learned what Caroline Dworacyzk: He’s very emotional, and he and Gary does, I found it really amusing. I said, “Are you kidding Busey were really going at each other. I forget which me?” At one time she packaged candy corn. What she charity Meatloaf played for, but it was a good one. does changes a lot, but right now she makes handcuffs. I should ask for some. (laughs) Cooper: People for the Ethical Treatment of Animals?

Cooper: Let’s talk about your handcuff fetish. Dworacyzk: (laughs) No, I believe it was The Painted Turtle; they have a camp for kids with life-threatening Dworacyzk: (laughs) I was just kidding. illnesses.

Cooper: Aside from Best Buddies, are there any other Cooper: Do you think the battle between Meatloaf and nonprofits that you’ve worked with? Gary was real?

Dworacyzk: Not to this degree. I’ve taken part in differ- Dworacyzk: It was. When you put all these different ent activities, like walks for breast cancer research. But, personalities together, and so many of them have huge as you know, Best Buddies is the charity I raised money egos, it can get really heated. Like, I ordered my food for when I was on Celebrity Apprentice, and after I won before she ordered hers, how did she get hers first? But the $40,000, I got to present the check to Caroline. But I there were other people, like [former model] Niki Tay- had to tell her, “This is not for you.” (laughter) I had to lor, for instance, who were great. She played for the make sure I said that when I showed it to her, because I American Red Cross. surprised her with it. Luckily she understood. Cooper: We were supposed to interview Gary Busey. I Cooper: Tell me more about your experience on briefly spoke to him about his motorcycle accident, Celebrity Apprentice. and his views on whether to wear a helmet or not. Did he ever talk about that? Dworacyzk: The hours were crazy. I would leave my suite at 4 in the morning to go to hair and makeup to Dworacyzk: Only every day. (laughs) He would tell any- start my day, and I wouldn’t get back until 11:30 at body who walked in the building, “See, I was in this night. So I had only four-and-a-half hours to wind motorcycle crash...” down, sleep and be ready for the next day. He has no sense of personal space. He would be talking Cooper: How long were you on that schedule? and get so close that our noses would touch. I had to

46 ABILITY Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere

say, “Gary, you’ve got to back up.” Dworacyzk: I call. She texts. No emails.

Cooper: So if you don’t eat Omaha Steak, does that Cooper: Did you come up with the one-day-a-month mean you’re a vegetarian? schedule?

Dworacyzk: I eat fish, but not red meat. Dworacyzk: No, we just get together whenever we can. It depends on when I’m in town, and when she’s not Cooper: Do you work out? working. It might be twice one month, and then the next month I might not see her, and then the following month Dworacyzk: Every day; I do Pilates. I might see her three times. It just depends on what’s going on. She has a boyfriend now, so she spends time Cooper: Do you travel much? with him, as well.

Dworacyzk: It depends on what I’m doing. If I’m work- Cooper: It would be fun if you could ask her if she’d ing in New York, I may stay there for two weeks, or I’ll talk with us to round out the article, and see how she go back and forth. likes hanging out with you.

Cooper: How often do you and Caroline get together? Dworacyzk: I think that would be good. She’s very funny and smiley and cute. Dworacyzk: I see her one day a month. Cooper: What’s on your bucket list? Cooper: Who calls whom? Dworacyzk: I was just thinking about that last night. I Dworacyzk: She can call me any time, but normally I’ll have a cousin who-- call her and see what her schedule’s like, and if I can see her the following week. Cooper: --makes buckets.

Cooper: Do you guys email? Dworacyzk: —(smiles) not quite. He’s been fighting a

ABILITY 47 Photos by Nancy Villere - CrushPhotoStudios.com Photos by Nancy Villere

rare form of mouth cancer for the last couple of years. Dworacyzk: I want to have kids. He never smoked or dipped [chewed tobacco], but he’s got cancer, anyway. He’s had a couple rounds of chemo Cooper: Your own or would you adopt? and radiation, and the doctors don’t think that there’s anything else that they can do for him. Dworacyzk: Both, if I have the chance.

Cooper: Has it spread? Cooper: Has there been something that you haven’t done where you’ve said, “I should have tried that”? Dworacyzk: They thought that they had gotten it all at one point, but it’s still there. Last night he told me that Dworacyzk: I was with friends who bungee jumped in he’s going to do a fundraiser for his medical bills, so Mexico. I didn’t bungee jump then, and I’m still glad I that he can take his wife to do some things on their didn’t do it. I really don’t know what it is that I should bucket list before it’s too late. They met in college, and have tried. I really would just want to surround myself got married a year before he found out he had cancer. with all the people that I love and maybe go skiing together. It would be more about the people than doing Because they never went on a honeymoon, they have a something. What about you? Do you have a bucket list? list of places that they’re going to, like Costa Rica, in April or March. He also wants to drive the west part of Cooper: Mostly things that cause a ripple effect for social Route 66. I was talking to him last night, and after we change. What do you think you’ll do after modeling? got off the phone I started thinking about what my bucket list would be like. I honestly don’t know what Dworacyzk: As a working model, you do have a limited would be on my list if I had just six months to live. I time period. When you start branding yourself and start think I would want to be in a room with all the people a make-up line, that extends it, but you have an expira- I love-- tion date. I know I’m not curing cancer. I know what my job entails, and I know that sometimes it’s pretty silly. Cooper: --and a bucket. I’m actually working on an animated show about it right now that makes fun of this lifestyle. The show belongs Dworacyzk: (laughs) And a bucket! on a channel like Comedy Central, late at night. I always wanted to be a dentist. When I was a kid, I Cooper: Is there anything that you want to do that you would always play with the dental hygienist’s tools, haven’t done yet that you would feel bad about not doing? and I thought I’d end up going into that field. When

48 ABILITY

50 ABILITY you’re 16 years old, though, and you earn more money pens in the hospital; you have to go through their train- working for Versace than your parents make in a year, ing to teach it. you go for it. I’ve done acting, and I’m studying the Meisner [acting] technique now in a two-year program. Cooper: Do you sing and dance?

Cooper: Tell me more about the comedy-animation show? Dworacyzk: I grew up doing ballet. But you don’t want to see me doing that. Dworacyzk: I can’t tell you the name yet, but it’s about the situations I get myself into, and it’s kind of risqué. I paint. I play Scrabble with friends on my iPhone. I The character was inspired by a Twitter account. When I have a group of people over for dinner parties and I was in Toronto and going to get a manicure-pedicure, I cook for them. I like being around people. opened up my Twitter account, and I remember think- ing: Am I going to tweet that I’m going to get a mani- Cooper: We moved the interview out by a few days cure-pedicure? How lame is that? I don’t want to be that because you were traveling. Where were you? girl, because I get so annoyed with dumb girls on Twit- ter. Then I thought: I need to create a dumb-girl account, Dworacyzk: I was in Texas to see family, and then I was where I can tweet things. One-liners. in Bora Bora.

Cooper: Your alter ego? Cooper: Which is just outside of Texas! [laughter]

Dworacyzk: Right. So I created this Twitter account, Dworacyzk: I didn’t want to just say, “Oh, I was and all of a sudden she had thousands of followers. relaxing in Bora Bora.” I had to tell you I was in Texas first. I spent a week with family in a tiny beach Cooper: Have you pitched any other shows? town between Houston and Corpus Christi on the Gulf of Mexico. Dworacyzk: I pitched one called Hope and a Smile, where a cosmetic dentist and I teamed up. I also got a Cooper: You were in Bora Bora for work? makeup artist, and a life coach and we shot the pilot. We took three recovering drug addicts who had lost Dworacyzk: No, I was there for New Year’s, which I their children. One had come back from the Vietnam slept through, until the fireworks woke me. I asked my War, and become an alcoholic. Her daughter was run friends, “Are those bombs?” over and killed, and then she became a meth addict, who couldn’t get a job because she lost all of her teeth. Cooper: How did you get involved with Playboy?

We did all their hair, their makeup and gave them a Dworacyzk: I was modeling in New York, when I met wardrobe, so they could function in society, go to job Holly Madison who was shooting Girls Next Door [The interviews and be accepted. It was a feel-good project, E! Channel reality series starring Hugh Hefner and his like Extreme Makeover for people. We pitched the pro- two girlfriends]. She asked me if I wanted to do a test ject to about six different networks, and, unfortunately, for Playboy. So I did a test and they said, “OK, we nobody picked it up. But I still have the pilot. Fashion want you to shoot the April cover with Seth Rogen.” I is cool, but I want to do something where you’re help- said, “OK, I love Seth Rogen, he’s really, really funny. ing somebody, and it’s making a difference. This is so cool.”

Cooper: That’s part of the ripple effect I was talking Cooper: Had you met him before? about, where you better the world. Dworacyzk: No, this was the first time that I worked with Dworacyzk: I’ve worked with the Art of Elysium, too, him. So in April 2009 I did a spread and a cover with doing art projects with sick children in hospitals. I Seth. At the end of the year, I got called to a meeting at don’t work with them like I do with Caroline and Best the Playboy mansion, and Mr. Hefner said, “I just need to Buddies, but it’s something I’ve taken part in that’s know if you’re interest in being Playmate of the Year? really wonderful. Are you too busy outside to do this? Would you like to do it?” At the time I wasn’t sure I was interested. [Playmates Cooper: The children in the hospital do the art? of the Year represent the Playboy brand at various public- ity appearances throughout the year.] But I said, “Of Dworacyzk: You bring in the crafts projects, and some- course I’d love to. I think it’s really cool, it’s an iconic times you’ll teach a group of nine or so kids this activi- kind of thing.” So I shot another cover in 2010, and that’s ty. It’s for kids who are in the hospital all the time, fight- how I became the 2010 Playmate of the Year. ing cancer or some other serious disease. They can’t leave. It gives the parents a break, and the kids get to do Cooper: Was this the first time you showed more of your something fun and interact with other kids. It all hap- body than you had on the runway?

ABILITY 51 Dworacyzk: I had been on the runway in sheer tops Dworacyzk: That was major. without a bra, so it wasn’t something I was uncomfort- able with. But that was fashion, and this was Playboy, Cooper: I saw the HBO film on his life; it’s really good. which is controversial. So obviously, Playboy made more of a splash than being on the runway for Versace Dworacyzk: It’s really, really good. It’s also interesting in a sheer top? (laughs) that, at age 86, he still has to keep up his playboy image by having two girlfriends. People are completely infatu- Cooper: Did you think it would further your career? ated with that lifestyle. But he’s a lot deeper than that.

Dworacyzk: I thought about that a long time when I Cooper: What do you think is going on in the minds of was asked to test. I didn’t tell anybody, not even my women who must look at him like he’s a grandfather? best friend, because I didn’t know what she’d say. But two years before that, when I was at my girlfriend’s Dworacyzk: When Hef was 35, 40 years old and run- place, her boyfriend had a Playboy magazine in the ning the magazine, I’m sure the girls around him want- bathroom, and I said, “Would you [pose]?” And she ed him to be in love with them, and to be his only said, “I don’t know, would you?” We both said that we one—no matter what they said. And I’m sure they would. But when the opportunity arose, I was so scared came in with better intentions than maybe they do now. that I couldn’t even tell her what happened. Now I think the draw is the lifestyle that comes with The first person I called was my grandmother. I said, Hef: the money, the fame, the access. Just being his “So, um, what do you think about me posing for Play- girlfriend, you get something—even though you’re arm boy?” She said, “If I was your age and had the opportu- candy. Although they’re there mainly to uphold an nity, I’d go for it.” If she had said, “That’s not a good image, I know he cares about the people he’s with. idea,” I would have told them, “I can’t do it.” When you spend that much time with somebody, whether it started off genuine or not, eventually you Cooper: You talked to your grandmother before you start caring for that person. I believe that. talked to your parents? Cooper: How much time did you spend at the mansion? Dworacyzk: Yes, because I knew if my grandmother said “okay,” they couldn’t say no. She’s the leader of Dworacyzk: My first issue came out in 2009, and I’ve our family, so I knew that it would be all right. been to two parties in three years. I could go up to the gate at any time and say, “Hey, it’s Hope. Let me in.” I Cooper: You went over your parents’ heads? (laughs) still have those benefits. Hef hosts game nights, where everybody plays board games. And on Sundays there Dworacyzk: I only ask permission when I know I’m are pool parties. I don’t go as much because I have a dif- going to get the answer I want. You don’t ask other- ferent kind of lifestyle. wise. So I didn’t go to my parents. Actually, when I told my mom, she said, “Yeah, but you don’t have to Cooper: What’s a typical day for you? take off your bra, right?” I said, “Mom, it’s Playboy.” After asking a lot of questions, ultimately, she was Dworacyzk: I’m modeling. fine with it. Cooper: Runway? Cooper: What about your dad? Dworacyzk: Runway and print, both campaigns. Dworacyzk: He’s seen the magazine’s cover, but he’s never seen the issue. He won’t look at it. I’m sure it Cooper: Are you helping Stephen Colbert’s campaign made him a little bit uneasy, but everybody else was for President of South Carolina? fine with it, so he told me, “I’m proud of you for being on the cover, but don’t show me anything else.” Dworacyzk: (laughs) That’s funny.

Cooper: If you had a daughter, would you be as quick as bestbuddies.org your grandmother to say, “Sure, go for it”?

Dworacyzk: If she knew who she was and was morally sound, then yes.

Cooper: A couple of things I found interesting when I interviewed Hugh Hefner were his effort to change soci- ety’s negative attitudes about sexuality and his focus on Caroline and Hope women’s rights.

52 ABILITY Toast the cumin seeds and powder, fennel seeds, curry Like spinach, kale is best if it is a little more cooked, but powder, coriander, turmeric and cinnamon in a cast iron don’t overdo it. frying pan on high heat until the cumin seeds start to pop. Remove from the heat, drain, and serve, or use the kale Add the lentils and stir until the spices are mixed in. in another recipe. Add a splash of water and continue cooking and stirring for two minutes. Add the sweet potato, carrots, onion, GARLIC ROSEMARY POLENTA sambal oelek and 4 cups water. (Courtesy of Micaela Cook)

Stir, cover, and bring to a boil, then stir again, turn down When I cut back on bread, polenta became one of my the heat and simmer for about 20 minutes until the favorite foods. Served with pinto beans, greens, and sweet potatoes and lentils are cooked. Add salt to taste baked onions, it makes a satisfying meal. and serve garnished with fresh cilantro. Serves 6 KALE WITH MIRACULOUS WALNUT SAUCE (Courtesy of Ann Esselstyn) 1 medium onion, finely chopped 3 cloves minced garlic When we visit our son, Rip, in Austin, TX, we always 2 tablespoons rosemary, ground if possible eat at Casa de Luz, a macrobiotic restaurant, because we 1 teaspoon salt, or to taste love the food and especially the walnut sauce on kale. 2 cups dry corn grits We asked the cook for the recipe. This sauce is not for 3 cups vegetable broth those with heart disease unless used sparingly. 2 cups unflavored plant-derived milk (or water) 1/3 cup chopped sundried tomatoes for extra flavor Serves 3 to 4 (optional)

1 bunch kale, prepared Preheat the oven to 350°F. 1 to 2 tablespoons low-sodium tamari 1/2 cup water, or more depending on desired thickness Mix together the onion, garlic, rosemary, salt and corn 1/2 cup walnuts grits. Add the broth and plant milk. 1 garlic clove Bring to a boil in pot, reduce heat to a simmer, and stir Put in a blender or food processor a handful of wal- gently until mixture is thick—about 10 minutes. Pour nuts, a clove or more of garlic, and a big sprinkle of into a pie pan and bake for 30 minutes. low-sodium tamari. FROZEN BANANA CREAM Blend and add as much water as necessary (about 1/2 (Courtesy of Mary McDougall) cup) to make it the right consistency to pour over the kale. It can be quite thin and still be good and will go a This dessert requires frozen bananas, which can also long way. It is good on absolutely everything. make a delicious addition to smoothies. When you have extra-ripe bananas, peel them, break them into pieces, Preparing Kale place them in a freezer bag and freeze them for at least Remove the stems, keeping the leaves whole. The most a day. fun way to do this is as follows (it works well for col- lards too): Hold the spine of the kale firmly in your right 6 frozen bananas hand. Loosely hold the lower part of the spine, just 1 tablespoon vanilla below the leafy greens, in your left hand. You may need 1/2 cup soy or almond milk to tear back the lower leaves to expose some of the stem. Holding firmly with your right hand and lightly Puree a few of the frozen banana pieces, about a teaspoon with your left, move your hands apart. The greens will of the vanilla, and a small amount of the milk in a food end up in your left hand and the bare stem in your right. processor until smooth. Pour into a large bowl and repeat (Collard spines do not always come away as far up the first step until all the bananas are processed. Quickly stir leaf, but that doesn’t matter.) the “ice cream,” and serve at once. Other frozen fruits may be added to the frozen bananas for additional flavor. Chop the pile of greens into bite-size pieces. (Don’t waste the spines; assemble them all in a row, chop them into forksoverknives.com tiny pieces, boil them and add them to soup!) theblissfulchef.com feelgoodguru.com Boil about 1 1/2 inches of water in a large frying pan and spread out the kale greens in the pan. Cover and cook for Reprinted by permission of The Experiment. 5 minutes, then test to see if it is cooked to your liking. © Monica Beach Enterprises LLC, 2011

ABILITY 53 oshua Smothers’ mom describes him as ‘the and all proposed cuts to individuals with disabilities. communicator” of the family. An essay by the Harkin was clearly against cutting Medicaid funds for young writer and graphic designer about his individuals like Tyler, but expressed with deep convic- brother, Tyler, recently won The Arc’s Achieve tion how hard times are in DC, when cuts to seemingly With Us contest. The prize included a trip for every aspect of Medicaid are on the table.” two from their home in Cedar Rapids, IA, to Washington, DC, where the Smothers brothers-whose “For us as parents,” said Cindy, “it was wonderful mom and dad tagged along-had a chance to visit The opportunity to be able to tell them how cuts in Medicaid Arc’s new national headquarters. The organization advo- would affect Tyler’s services.” Cuts could mean the loss cates for people with intellectual and developmental dis- of Tyler’s Supported Community Living helper, which abilities. Joshua’s win also included a year’s subscription might require that he limit or even cease his volunteer to ABILITY Magazine. work in the community.

In the essay, which appears below, Joshua shares that The family, which was familiar with The Arc of Cedar Tyler was born with a rare birth defect that kept him in Rapids, was impressed by the staff in the organization’s and out of hospitals-and operating rooms-for many national office. Upon arrival, they were greeted by smiling years. While visiting the nation’s capital, the family was faces, along with a banner that said, “Welcome Tyler.” able to meet elected officials, and discuss the impor- tance of continuing to provide services for Tyler, and “It was refreshing to know that The Arc staff is doing young people like him. everything in its power to make the voices of the disabled and their families heard on a national level,” Cindy Smothers, Joshua and Tyler’s mom, said Tyler Joshua noted. “thought his state representatives, Senators Chuck Grassley and Tom Harkin, and Representative Dave Their time in the District included stops at a number of Loebsack, were very friendly. Tyler told them about the the iconic monuments. assistance and support he receives in Cedar Rapids. “Speaking to them in their DC offices was a highlight,” “We enjoyed the tour of the White House,” said Tyler. Joshua acknowledged. “Their separate stances on the “I loved going on the elevator in the kitchen with the proposed Medicaid changes was an eye-opener. Loeb- Secret Service and my dad, and seeing all the big stat- sack looked us in the eye and vowed to vote against any ues. We walked to lots of memorials and toured the

54 ABILITY Holocaust Museum. The whole trip was a blast!” and uses an apnea monitor while sleeping to follow his low-heart rate and periods when he stops breathing. Here is Joshua’s winning essay: If Tyler has an episode of a low heart rate or if he stops PUTTING HIS PASSION TO WORK breathing the monitor alarms(very loudly!!) to alert us, we then will shake Tyler to stimulate his heart or breathing. Tyler Smothers has never been one for hoarding the Sometimes the sound of the alarm itself stimulates Tyler to spotlight. He doesn’t shy away from attention, but he’d start breathing again on his own. We have done CPR on rather share it with the people he cares about. Tyler’s Tyler to get him breathing again. Very few nights go by that affinity for social gatherings and his loyalty are two he doesn’t have alarms at all, he probably averages four to reasons a fourth annual bike ride that raises funds for five alarms a night. As he’s gotten older, stimulating him by The Arc of East Central Iowa expanded this year to shaking him is usually enough to stop the alarms. Most chil- welcome other participants to ride, push or walk along- dren out grow sleep apnea by age one, but Tyler’s brain side him at a September 18 event at Clark Memorial damage in the area of the Encephelocele will always affect Park in Hiawatha, IA. his voluntary motor functions, such as breathing while sleeping on his own and those voluntary functions also “I had a blast during the first three rides, but I think include swallowing properly. his muscle control isn’t there more people should join me,” he said. “This way we can to swallow liquids without choking, so that is the reason for raise more money.” All contributions go to The Arc of the gastrostomy tube. East Central Iowa, which offers services in eight coun- ties in Iowa, and empowers people with intellectual and He uses a wheelchair for most of his daily mobility-except developmental disabilities to live, work and play within when he’s on his bike. Bike rides have always been thera- their communities. peutic for Tyler, who helped create “Tour de Flood” in the fall of 2008 as an effort to raise money to assist The Tyler and our family have benefited from The Arc’s Arc with day-to-day items during flood recovery. resources over four decades. So when my brother watched in horror as the historic floods of 2008 A modest goal of $2,000 was set. But he far exceeded engulfed the agency’s headquarters in downtown Cedar that, helping to raise more than $18,000, and he didn’t Rapids, causing more than $800,000 in damage, he stop there. Tyler continued to pedal, and as the fourth feared the worst. He assumed his daycare program annual event approached, Arc officials hoped to surpass would be cancelled, and that activities such as bowling, the $40,000 mark overall. movie night or karaoke would be discontinued. “It was just terrible,” he recalled. Delaine Petersen, executive director of The Arc of East Central Iowa, is not surprised that the original idea to For the first time in a long time, Tyler felt like his life “flood The Arc” with donations is still a success three was at a standstill. But finding a way to overcome insur- years later. mountable odds was nothing new to him. Born in 1984 with a rare birth defect-an occipital encephelocele-along “Tyler is an inspiration,” she said. “He is a perfect with Arnold-Chiari Malformation II-he faced staggering example of what The Arc stands for, and he has done odds of survival. He spent the first few years of his life wonders for the community.” in and out of hospitals, and has endured 12 major surg- eries. He receives fluids through a gastrostomy tube, thearc.org

ABILITY 55 Jack Nicklaus on Vet Course

very time Jim Martinson traveled down Veter- group Friends of American Lake Veterans Golf Course. ans Drive in Lakewood, WA, he looked out his window and saw the golf course. An athlete His organization was formed to run the facility in 1995, who had become a bilateral, above-knee after the US government stopped maintaining VA golf amputee while serving in Vietnam, he contin- courses. “I don’t know how many of these golf courses ued to compete after the war ended. there were at the time, but almost all of them were sold [or transferred] to local communities,” Sims says. “I In 1980, he won two gold medals in the 100 meter and think there were about 10 that were maintained, and one 4x100 meter relays during the Summer Paralympic of them was here at American Lake Veterans Hospital, Games. Then Martinson, who uses a wheelchair, con- which is just outside of Fort Lewis [WA].” vinced Boston Marathon officials that he should be able to compete on the same course as able-bodied runners, Sims’ organization has no paid employees. More than and went on to win that event in 1981. A decade later, he 200 volunteers do everything from cutting the grass, to designed the first monoski and won the downhill com- serving meals, to issuing golf carts in the clubhouse. petition in the 1992 Winter Paralympic Games. They also raise funds and seek in-kind donations to cover needed repairs and upkeep. As they spruce up the Success in golf, however, eluded him. course, accessibility is a top priority.

“I’ve always liked golf, but after I got hurt, I thought I’d “A big issue was to make the golf course sand traps— never be able to play,” he says. “Once in a while I’d golf and there aren’t that many—such that you could drive in and wear prosthetics, but when I took a good swing, I’d and out of them with a golf cart, so that golfers who are lose my balance, or when I was in the wheelchair, I physically impaired can play the game,” Sims says. couldn’t get onto the greens.” American Lake’s strides towards accessibility inspired Still, the urge to give it a try welled up in Martinson Martinson to give golf another shot. “As a retiree, I was every time he passed that course on the way to the Vet- doing all these other sports and was pretty good, so I erans Administration (VA) hospital, which had incor- went out and met some guys at the course and started porated the nine-hole course into its rehabilitation pro- golfing in a SoloRider cart. Now I’m a golfaholic.” gram after World War II. The course owns several SoloRider and PARA-Golfer “At that time, they had a considerable population of vet- carts—single-rider vehicles that allow the user to move erans from not only the Second World War but also the into a standing position from the seat. The carts also Korean War,” says Jim Sims, president of the nonprofit have even weight distribution, allowing them to traverse

56 ABILITY the greens without damaging the grass. Martinson uses a PARA- Golfer, which is smaller and allows the player to stand at the front of the cart, rather than beside it.

It’s unusual for a course to have as many single-rider carts as American Lake. For many facilities, the price is prohibitive. PARA-Golfers cost between $15,000 and $20,000, while SoloRiders go for around $7,000 to $10,000. “If I didn’t have access to these carts,” Martinson says. “I’d take out a loan out and buy one.”

He’s aware of the current debate over carts within the industry: Some argue that the government should mandate American courses to pur- chase single-rider carts, while others say courses cannot shoulder the financial burden, particularly when the carts may go unused.

The real battle, Martinson says, is educating people with disabilities that playing golf is possible.

“They’re embarrassed or afraid,” he says. “So the people making the big squeak about being able to play at every course are people like me.” here. I’m doing this because I want to do it.”

A vet’s money goes further at the American Lake Veter- For the injured vet who is integrating back into society, ans Golf Course, where greens fees are less than $15, American Lake creates a comfort zone. “The environment cart fees are waived and vets can play all day. here is such that one person can relate to the other and can say, ‘I know what you’re feeling,’” says Martinson. To enhance veterans’ experience, the course has added, among other upgrades, a covered driving range, a club- Nicklaus echoed that statement at Lakewood. “When house meeting facility, and rehabilitation and learning you lose a limb, lose an arm, all of a sudden you feel centers. The innovative instruction area houses a Full like you are ostracized from society,” the six-time Mas- Swing golf simulator with a variety of course layouts ters winner said. “This puts these guys back into society. and different types of fairways, rough, and bunkers. It gives them self-worth.”

The latest project is a course addition, which is being Martinson experienced that sense of uplift with other designed by golf legend Jack Nicklaus, who was recruit- sports, but golf hasn’t come as easily to him.“When I ed by former PGA Tour player Ken Still. Nicklaus, who wanted to get better at downhill skiing, I ran gates is respected nearly as much for his skills as a golf-course over and over and over until I got better. When I designer as for his playing, has a keen interest in helping wanted to make the Paralympic team, I raced wheel- disabled veterans learn the sport. After visiting the facili- chairs until I got better. With golf, gosh, I don’t think ty, he offered to help expand it and has offered to design a I have enough time in my life to get to the point where second nine-hole course there. The Friends are currently I’m halfway decent. But I love it. I love every aspect raising money to construct what everyone’s calling the of it.” New Nine and to improve the existing course. by Josh Pate “All projects are very important to me, but this one is Friends of American Lake Veterans Golf Course: out of love,” Nicklaus said a little over a year ago when veterangolf.org he put on a free clinic for the veterans in Lakewood. “At Nicklaus Design: American Lake Veterans Golf Course: a lot of places I’m a hired gun, but I’m not a hired gun nicklaus.com/design/american-lake-veterans

ABILITY 57 Maggie and Momma stop to chat with Liz, who sells fresh flowers on the street.

“What do you use to help your body?” Maggie asks.

“I use a hearing aid,” Liz says, showing off her ear.

“It helps me listen to voices and sounds coming from near and far.”

58 ABILITY Maggie and Momma stop to chat with Justin, who teaches a hip-hop dance class at the park.

“What do you use to help your body?” Maggie asks.

“I use an artificial leg,” Justin says, lifting up his pants legs. “It helps me stand, walk and bop.”

Maggie and Momma stop to chat with Mrs. Ali, who writes poetry under trees.

“What do you use to help your body?” Mag- gie asks.

“I use a walker,” Mrs. Ali says. “It helps me move on my feet, and I can sit down on my walker’s seat when I need to relax.”

After a long elevator ride up, Maggie and Momma enter their cozy apartment.

“Do you know what the grownup word is for things that help your body?” Momma asks.

“No, I don’t know,” Maggie says, wiggling out of her shoes. She bounces onto her feet. “Please tell me, Momma!”

Momma smiles. “They’re called assistive devices.”

“Neat!” Maggie shouts. “Now, I can ask grown ups about their assistive devices all the time.”

“I’m afraid not, Maggie,” Momma says. “Not all people are comfortable talking about their disabilities.”

This time Maggie smiles. “That’s okay. I’ll be respectful like you taught me.”

Momma tousles Maggie’s hair. “That’s my girl. I can always count on you to see things right—eye patch or not.”

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60 ABILITY ACROSS DOWN

1 Bass vocalist of Back Street Boys raising public 1 Lincoln _____, character who is paralyzed from the awareness on colon cancer, Kevin ___ neck down in “The Bone Collector,” played by Den 6 1997 Will Smith film “___ in Black” -zel Washington 8 Notable period 2 ___-do attitude 10 Lou Gehrig’s team 3 Form of discrimination 13 “Johnny ____” movie about a girl who cannot hear 4 Forced to move, like a refugee or speak, starring Jane Wyman 5 Sun or moon 15 Tiny distance measure, for short 6 He was the driving force behind getting rid of 16 Internet service provider, abbr. apartheid 17 “Obviously!” 7 Wyle of “ER” 18 Beauty is in the __ of the beholder 8 FDR’s wife 20 Star in “Frida” who is an artist overcoming polio and 9 North-eastern state a back injury when she was a child (2 words) 11 One of Alcott’s “Little Women” 23 A Bobbsey twin 12 Vane direction 24 Guitar great ____ Paul 14 She played Helen Keller in “Miracle Worker,” 26 He plays an amputee in “Moonstruck,” Nicholas___ Patty ___ 28 Movie where Al Pacino plays a blind retired army 19 Oval object colonel (goes with 51 across) 21 Columnist Coulter 29 Rapper who plays a paralyzed drug dealer in “Train 22 “The Cat in the __” -ing Day” (goes with 32 across) 25 Spreads white flakes 32 See 29 across 26 “Amazing Race” network 36 “____ Good Men” movie 27 Self-esteem 39 Very small 30 Result 40 Bridle parts 31 Horror writer 41 Movie starring Goldie Hawn where she helps a blind 33 Wise one man gain independence (goes with 43 down) 34 “Memoirs of a ___” 45 Clippers’ state 35 Go to the right! 47 Oliver ____, director of a movie portraying a man 36 Legal group, briefly with a spinal cord injury, “Born on the Fourth of 37 Characters in “Ladder 49” July” 38 Parisian summer 49 Numerical ending 41 They can be stolen 51 See 28 across 42 Brown color 52 Clear the slate 43 See 41 across 53 Quarterback move 44 Stitched up 54 First African American coach to win the Superbowl 46 Goes with 500 48 Moose 50 Give it a go

answers on page 62 ABILITY 61

DUNGY Y SNEAK

D E ERASE L M E

OAN WOMA ETH STONE

I E E S R CA A

UTRLIESARE I BUTTERFL

BITS EE WE O U

AFEW DOGG SNOOP

O R E G B

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LES NAN A M G

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DUH E ISP MM

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MEN CHARDSON I R ANSWERS

62 ABILITY ABILITY 63 EVENTS AND CONFERENCES

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68 ABILITY Events & Conferences

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