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Contents Departments feb 2013 Issue 2
10
24
16
72
20 8 10
From the Editor Art Submissions
12
Calendar
16
Wabi Reviews
22
What’s In Your Area?
62
Dynamic Duos Check out the iPad edition for bonus content!
EDUCATION 68 72
Testing with add or adhd
14 74
Ask Wabi
ARTS unbound Helping emerging artists with disabilities realize their potential
changing labels Tips on treating people with disabilities fairly
FUN 60 64
LOVe, enabled four little words
HEALTH & WELLNESS 19 all about allergies: lactose intolerance
24
athlete spotlight: oscar pistorius
Cover Story: R.J. Mitte Making it in the entertainment industry with a disibility PHOTO COUrTESY OF ADDISON WITT
JAN2013 5
Contents Features JAN 2012 Issue 1
54
44
26
50
50
Breaking into an industry where image means everything.
Social media can help build friendships and families.
Special programs for students with disabilities.
How animals help you stay healthy and have fun.
Programming maps, games and books for children with disabilities.
By Melanie Johnson
By Florence Bryan
By Margaret Croom
By Florence Bryan
By Faith McElroy
On the Cover: R.J. Mitte
Logging in, Reaching Out
A Higher Education
You’ve Got a Friend in Me
Coding the Future
32
Building Bridges Creating post-graduation career opportunities for students with learning disabilities. By Brandon Wiggins 6 wabisabi
SXSW Interactive Award winner and finalist / Horizon Interactive Awards best in category, gold and silver / Student finalists in Hearst individual writing, broadcast and multimedia championships / SABEW Best in Business contest winner / Gold in each multimedia category of 66th College Photographer of the Year competition / SND Best of Digital News Design silver medal / Zenith Awards in research, social media and case studies / Hearst Journalism Awards first place multimedia features / Hearst Journalism Awards first place radio broadcast news / Award of Special Merit from the Grantham Prize / Sweep of standalone multimedia category in student SND contest
Shaping the future of digital media The UNC School of Journalism and Mass Communication is an international leader in digital media.
ital Media
The school’s “Coal: A Love Story” project won the top student award from South by Southwest Interactive. It also drew an Award of Special Merit from the Grantham Prize, which honors exceptional environmental journalism. See the new water-themed project at poweringanation.org
Entrepreneurship
Dig
Carolina welcomes a new Knight Chair in Digital Advertising and Marketing to Chapel Hill this year to join forces with our Knight Chair in Journalism and Digital Media Economics. The dual Knight Chairs create an entrepreneurial hub that drives innovation at UNC.
Innovation
The experimental Reese Felts Digital Newsroom was awarded a grant to provide a digital news service that advances the national conversation around the need for more science, technology, engineering and math (STEM) teachers in America. The service will distribute content and track audience engagement in order to inform future coverage and approaches to reporting. reesenews.org
Congratulations to our students, faculty and alumni presenting at this year’s conference, and to doctoral alumni winning top AEJMC awards: Dean Smith – The Nafziger-WhiteSalwen Dissertation Award for the best Ph.D. dissertation in the field of mass communication research.
jomc.unc.edu
Kathy Roberts Forde – The Covert Award for the best mass communication history article, essay or book chapters in edited collections.
/uncjschool
Thanks to the Triad Foundation for 15 years of funding the prestigious Park Fellowships for graduate students at Carolina. jomc.unc.edu/park
Business Models
EDITOR’S LETTER
Margaret Croom
Art Director Brittain McNeel
iPad Editor Katy Denning
Editorial Staff Florence Bryan Carissa Davis Melanie Johnson Faith McElroy Brandon Wiggins Design Staff Emma Galli Aaron Moore Annalee Rigdon Katelyn Trela Special Thanks Emma Galli Linda Brinson Terence Oliver Stephanie Willen-Brown Dana McMahan
Mission Statement The mission of wabi sabi is to embrace the worldview of finding beauty in imperfection. We seek to support and connect families of children with special needs, ultimately celebrating individual’s differences -- not their disabilities.
to our readers, Back in August, when I first started working on this, the second, issue of wabi sabi, I never would have guessed how my experience as editor would go. I was, of course, excited at the prospect of leading a talented group of writers through the brainstorming, interviewing, drafting and editing process that goes along with creating a magazine. I knew the work would be time-consuming. I anticipated, and was right, that I would obsess over the little details – a comma here, a more suitable word there – and spend long nights looking over drafts and tweaking articles until the very last minute – to the chagrin of our design team, who were patiently awaiting my edits. What I wasn’t prepared for was the connection I formed with the magazine through the stories I read and the people I interviewed. I didn’t grow up knowing anyone with a disability; that was a group of people mysterious to me. But on my first day as editor, I picked up a copy of the first issue of wabi sabi and didn’t put it down until I finished.
Sincerely,
Margaret Croom Editor
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PHOTO BY KATY DENNING
Editor
My first reaction? “These are stories worth telling.” So that’s what we set out to do in this issue of wabi sabi. We searched for people and topics worth talking about. We sought to educate, entertain and, if we could, make a difference in the life of just one person. We talked to a variety of people – from actors and professors to bloggers and parents – to find the beauty in every situation. We didn’t look for stories that were perfect. Instead, we looked for stories that needed to be told. The end result? Imperfect stories about lives that are anything but perfect. Stories that recognize the beauty in difficult situations – stories that speak to you. Enjoy!
We never give up on a child.
www.lucydanielscenter.org
ar t
wabi
This month, wabi sabi received art submissions from across the country. The artwork featured is from the students at Arts Unbound New Jersey, VSA Indiana and HeART of the Spectrum in Seattle, Wash. Check out more of their students’ wabi art on our free iPad app!
FEATURED ART
BRUCE JOHNSON
CHANTEE RICKS
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COLLEEN CREEDON
JUSTIN CANHA
Want to submit art to wabi sabi? Email your art to contactwabi@gmail.com
BRADLIE JACKSON JAN2013 11
Calendar: 5K RUNS
Run for a Cause:
5K RACES
This spring, 5K runs are popping up all over the country. These races benefit organizations helping those with special needs.
By Faith McElroy
ARBOR DAY 5K RUN/WALK/ROLL FOR DISABILITY AWARENESS The run promotes awareness for Disability Connection, an online resource center and directory for people with disabilities. Biloxi Town Green, Biloxi, Miss. February 23, 2013.
April This event’s proceeds will benefit Advanced Independence. This company supports individuals with autism, cerebral palsy, epilepsy and other cognitive and physical disabilities. Rio Vista Park, Peoria, Ariz.
20 MAIN STREET 5K &
FITNESS EXPO The Main Street 5K includes many fitness-oriented activities and entertainment for the whole family: stroller fun, family walks and runs, massage therapists, face painting and dining at Main Street Cafe. Proceeds will go to the Special Olympics. Sparta Avenue, Sparta, N.J.
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27 DAN RIVER AUTISM
AWARENESS 5K Proceeds will be donated to Austim Speaks, a national autism advocacy and research organization. The funds will also establish the Autism Education Fund to support autism education-related organizations in the Dan River area. Danville, Va.
May
19 6TH MS MILES OF SMILES
RUN/WALK 2013 Miles of Smiles is a charity race for all ages to benefit the National Multiple Sclerosis Society. The organization supports research into the cause of and cure for Multiple Sclerosis and funds local programs and services to improve the quality of life for those with the disease. Allison Park, Pa.
11 3RD ANNUAL ELIM EAGLES
5K RUN, WALK & ROLL This race supports Elim Christian Services, an institute that provides resources and educational opportunities to individuals with disabilies and their families. Palos Heights, Ill.
Have an eve nt for our June issue? Send an email to: wabisabima g @gmail.com
PHOTO BY JANIE O’KEEFE
7 SYDNEY’S RUN 5K
Calendar: SUMMER CAMPS
accessible camps CAMP Tuhsmeheta ACA accreditation in progress. For children, ages 7 to 18 with visual impairments. Oneweek sessions, each focusing on a different activity. Greenville, Mich. WONDERLAND CAMP ACA accredited. For people of all ages with physical and mental disabilities. One week sessions, each with its own theme. Rocky Mount, Mo. CAMP C.A.M.P. ACA accredited. For children with severe disabilities that make them ineligible for other camps. Five-day sessions. Center Point, Texas. Camp riley For children with physical disabilities, ages 8 to 18. Five one-week sessions throughout the summer divided into age groups. Indianapolis, In. adventure amputee camp For children ages 8 to 17 with amputations or limb differences. A chapter of disabled sports USA. Bryson City, N.C. camp grizzly For children who are deaf or hard of hearing, ages 7 to 15. Ages 16 to 18 can be counselors in training. One week of the summer. Portola, Calif. camp aldersgate Residential camp for children and youth with medical, physical and developmental challenges. Little Rock, Ar.
More than just s’mores and singalongs Summer may seem far away, but it’s about time to pull out your calendar and start registering your children for camp. The benefits of summer camp for children with special needs are similar to the benefits for any child, according to KidsHealth.org. Here are a few of those benefits.
By Florence Bryan
1 BUILDING CONFIDENCE. Children are given the freedom to learn and explore within the safety of a structured environment. They can try new things, giving them an increased sense of independence and self esteem.
GET KIDS MOVING.
2
Children with disabilities benefit from greater physical activity at camp because they are typically more sedentary than their peers. Games with fellow campers are a fun way to encourage children to be active, especially outside, and they experience the health and social benefits of exercise.
3 MAKING FRIENDS.
At camp, children with disabilities meet others who deal with similar challenges to the ones they face. Building relationships is an important step in their growth.
POSITIVE ROLE MODELS.
4
The counselors at camps are selected for their positive attitude and ability to work well with children. They act as role models for children to look up to.
5 A BREAK FOR PARENTS.
Let’s face it — being a parent whether or not your child has a disability can be tiring at times. Camp gives parents the opportunity to relax and recharge with the peace of mind that their children are in good hands. A little time away from your children will give you the energy to be an even better parent when they come home! JAN2013 13
ask wabi Q:
My son was recently diagnosed with mild high-functioning Autism Spectrum Disorder. I have not shared this with friends and family yet because I want my son to know and understand his diagnosis first. I want him to see ASD naturally and develop his own positive interpretation without someone telling him about it. How should my wife and I go about telling our son and then our close friends and family?
Write in! While wabi sabi may not publish all of your questions, we would love to read and answer as many as we can. Please try to limit your questions to 150 words.
Sincerely, A Loving Dad
Hi Loving Dad, The next step after diagnosis is a big one. Choosing when to tell your friends and family can be difficult because you might be nervous about their reaction. Remember that your son’s reaction is the most important. As for friends and family, start with your closest circle. Prepare yourself for all types of reactions and understand that everyone responds differently.
TELLING YOUR CHILD about his or her disability
1 2 3 4 14 wabisabi
Do research.
Find articles, books and movies based on your child’s disability.
Read books.
Help your child see disabilities from a child’s point of view.
Discuss.
Explain the books so that your child understands his or her diagnosis.
Find support.
Get involved! Build a family within the community.
Q:
Have a question for “Ask wabi”? Send an email to contactwabi @gmail.com
Whenever my daughter and I go anywhere we often catch someone, children and even adults, staring at us. My daughter is a tough 8-year-old with Down syndrome. Despite her tough attitude, I know the stares get to her sometimes. How can we both handle the staring? Sincerely, Tough Girl’s Mom
Dear Tough Girl’s Mom, There is no doubt that when we catch people staring at us we immediately begin to think about our imperfections. Let’s remind ourselves that no one is perfect! Turn those stares into a positive opportunity. Use staring as a chance to kindly introduce yourself and Tough Girl to people. You never know, the person you caught staring might have a question about Down syndrome or about where you bought Tough Girl’s cute sweater. Never miss out on a chance to educate someone or make a new friend!
wabiReviews
This month, we’ve chosen our favorite children and tween books to educate and entertain families. Get the whole family together and enjoy the fun-filled stories!
Ages 4-8
THE TOP
BOOKS
5
Ages 4-8
A VERY SPECIAL CRITTER Written by Gina and Mercer Mayer Illustrated by Mercer Mayer
TOBIN LEARNS TO MAKE FRIENDS Written and Illustrated by Diane Murrell
MY FRIEND WITH AUTISM
LEMON THE DUCK
Written by Beverly Bishop Illustrated by Craig Bishop
Written by Laura Backman Reviewed by Melanie Johnson When Ms. Lake and her elementary school class hatch and raise four ducklings, they soon realize that one of the ducklings is not like the others.The little yellow duckling they’ve named Lemon cannot stand or walk like her other feathery siblings. She has a balance condition that keeps her from being able to stretch her neck, stand up and waddle in the grass like the other ducks. However, with a little bit of creativity and extra special care, Ms. Lake and her class nurture Lemon and help her reach her full potential. This heartwarming book based on a true story teaches children and parents the significance of respecting and supporting those who are different.With its compelling plot and beautiful illustrations, “Lemon the Duck” teaches us all the importance of patience, acceptance and lots of love and extra-special care when supporting and nurturing extra-special ducks. 16 wabisabi
HOOWAY FOR WODNEY WAT Written by Helen Lester Illustrated by Lynn Munsinger
FIREFLIES: A WINTER’S TALE Written by Alice Hoffman Illustrated by Wayne McLoughlin
THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME
WONDER Written by R.J. Palacio Reviewed by Margaret Croom
Written by Mark Haddon Reviewed by Margaret Croom This mystery novel tells the story of 15-yearold Christopher John Francis Boone as he embarks on an investigation to discover who killed a neighborhood dog. Told from Christopher’s point of view, this novel captures the way he views the world around him and the people in it. It’s a novel about difference, about how an outsider sees the world. The childlike innocence that permeates the book adds to the thrill of a boy discovering himself in his attempt to make sense of what is happening around him. Full of surprises and warm sentiment, “The Curious Incident of the Dog in the Night-Time” is the perfect novel to celebrate being different in a world full of the same.
THE TOP
BOOKS
5
Ages 8-14 PLUNKED
THE REFORMED VAMPIRE SUPPORT GROUP MOCKINGBIRD THE GIVER
MARCELO IN THE REAL WORLD Francisco X. Stork
Catherine Jinks
Kathryn Erskine
Lois Lowry
Michael Northop
SPORTS
FANTASY
OVERCOMING TRAGEDY
COMEDY
GROWING UP WITH AUTISM
JAN2013 17
Ages 8-14
Auggie Pullman knows he is different. He was born with severe facial deformities, the kind that cause people to stop and stare when he walks by. But he’s learned to ignore the stares and live a normal life because that’s how he feels on the inside, normal. After he has been homeschooled for his whole life, Auggie’s parents have finally enrolled him in fifth-grade. At school Auggie must deal with all the regular troubles 10-year-olds have along with the troubles that come with looking the way he does. Auggie’s kindness and generosity toward his teachers and peers help him through the adventure of middle school. Told from Auggie’s perspective, “Wonder” tells a story of the bravery that is required when you have no choice in being different. It teaches that while there are bullies out there, more often then not you will find kindness in extraordinary places. Auggie shows us that it’s not always a bad thing to stand out. This is a great book for children entering a school and facing the same stares and remarks that Auggie does just because they are different.
Jump In! Downtown Chapel Hill’s small museum with a mighty impact. Offering Playful, Hands-On Learning Experiences to All Children Providing Accessible, Quality Early Education Equipping Children with “21st Century Skills” Fostering Sustainable Living and Green Learning Helping Families Support Children’s Development
2
Complementing the Work of Schools, Preschools & Childcare Centers Creating An Educational Umbrella for Partner Organizations Serving Children and Families
Learn more at www.kidzuchildrensmuseum.org
CHILDREN’S MUSEUM
At University Square • 123 W. Franklin Street, Chapel Hill
All About Allergies LACTOSE INTOLERANCE By Margaret Croom
JAN2013 JAN2013 00 19
All about allergies: LACTOSE INTOLERANCE
UNDERSTANDING LACTOSE INTOLERANCE
dairy free strawberry ice cream
For most people, the cells that line the small intestine produce an enzyme called lactase. Without enough of the lactase enzyme, lactose moves unprocessed into the colon, where normal bacteria interacts with it. In order to understand how to live with lactose intolerance, we highlighted some key facts about the condition:
What is it? Lactose intolerance is a disorder that stops a person’s body from digesting milk and other dairy products because the enzyme lactase is missing from the digestive system. What are the symptoms? Symptoms can appear 30 minutes to two hours after consuming foods with lactose. Symptoms vary, but can include: bloating, gas, abdominal cramps, diarrhea, nausea and sometimes vomiting. These symptoms will fade as the lactose filters out of the body, but if they persist, a person should contact a doctor.
Who is at risk? The risk of becoming lactose intolerant increases with age; babies and children are normally not at risk of developing the condition. The exception is premature babies who could have decreased levels of the lactase enzyme, since this develops in the late third trimester. The condition is more prevalent in black, Hispanic, Asian and American Indian people. Problems that affect the small intestines can also cause lactose intolerance.
What can I do? There is no cure for lactose intolerance. There are currently no medications to increase the amount of the lactase enzyme in the body. Most people with the condition find that reducing the amount of dairy products they consume brings relief from the symptoms of lactose intolerance.
Lifestyle changes: Reducing the amount of dairy products you eat does not mean you have to give up the calcium and vitamin D that these products contain. This is especially important for elderly people with lactose intolerance since they are also at risk for osteoporosis. Look for foods that are naturally rich in calcium and vitamin-D, and for fortified foods.
On the brighter side: For people with a small amount of intestinal lactase, it is possible to enjoy small amounts of dairy products even with lactose intolerance. In fact, introducing dairy to your diet a little at a time may help your body build up a tolerance to lactose.
whipped cream Cook Time: 1 hour Serves: 4 What’s Needed: • 8 oz firm silken tofu • 3 oz demerara sugar • 2 tbsp soy milk • 1-2 tbsp vanilla extract (check ingredients label) 20 wabisabi
Directions: Place all the ingredients in a blender or food processor and process until very smooth. Chill for at least one hour. Serve in place of normal whipped cream with pies, fruit, puddings.
Cook Time: 8-48 hours Makes: 12 servings What’s Needed: • 3/4 c turbinado sugar • 1 tsp unflavored gelatin • 1 (14 oz.) can unsweetened coconut milk • 1 1/4 c rice milk • 4 egg yolks, beaten • 2 cups hulled strawberries • 2 tsp pure vanilla extract Directions: Combine turbinado sugar and gelatin together in a large saucepan; add coconut and rice milk. Cook and stir over medium heat until almost boiling and sugar is dissolved, about 5 minutes. Scoop about 1/2 c hot milk mixture into bowl with beaten egg yolks; whisk together. Slowly pour egg mixture back into saucepan, stirring constantly. Lower heat to medium-low; cook and stir until mixture is smooth, about 3 minutes; do not boil. Remove from heat and cool slightly. Put strawberries in blender; pulse several times to chop before leaving it on to puree. Stir strawberry puree and vanilla extract into milk mixture. Refrigerate 8 to 48 hours. Pour mixture into a 4-quart ice cream maker and follow manufacturer’s instructions.
All about allergies: LACTOSE INTOLERANCE
A Dairy Free Fridge Doesn’t Have to be Empty
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2 1
5 4
1
MILK
Being lactose-free doesn’t rule out cereal or chocolate milk. Check your local grocery store for lactose-free brands of milk. We suggest: Blue Diamond Almond Breeze
2
CHEESE
The perfect snack for an on-the-go, dairy-free diet can still be healthy. Grab a slice or wedge of dairy-free cheese for a sandwich or by itself. We suggest: Daiya products
3
ICE CREAM
Ice cream is one of the hardest things to give up in a dairy-free diet, but name brands offer new products so you don’t have to miss out. We suggest: Breyer’s Lactose Free Ice Cream
4
YOGURT
You don’t have to give up yogurt to live a dairy-free life! Many substitutes are available using almond, soy and coconut milk. We suggest: SO Delicious Dairy Free
5
BUTTER
Baking dairy-free is not impossible. You can still get the same flavor and result even with your lactosefree needs. We suggest: Earth Balance Buttery Spread
JAN2013 21
What’s In Your Area? pacific coast
Wabi sabi believes that it’s important to connect families with the resources close to them. This month, we’ve focused on the West Coast, specifically California, Oregon and Washington, in identifying programs, support centers and schools that offer a variety of services for our families.
By Melanie Johnson
The Depression and Bipolar Support Alliance of Oregon Eugene, OR Down Syndrome Association of Southern Oregon Medford, OR
Key: Schools Family Resources Hands-on Help
Parents Helping Parents San Jose, CA AbilityFirst Pasadena, CA Epilepsy Support Network of Orange County Huntington Beach, CA
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Brightmont Academy Bellevue, WA Disability Rights Washington Seattle, WA Oregon Deaf and Hard of Hearing Services Salem, OR
Brightmont Academy A specialized K-12 school for students with learning disabilities that offers one-on-one instruction and personalized programs. 12360 NE Eighth St. Ste. 210 Bellevue, WA 98005 425-373-0800 Other school locations in Sammamish and Seattle, WA. www.brightmontacademy.com
Down Syndrome Association of Southern Oregon A nonprofit created to empower individuals with Down syndrome, provide support and resources for their families and educate the broader community. 33 N. Central Ave. Ste. 205 Medford, OR 97501 541-776-9805 www.dsaso.org
Disability Rights Washington A private nonprofit organization that protects the rights of people with disabilities across the state. Its mission is to advance the dignity and self-determination of people with disabilities through free advocacy services. 315 Fifth Ave. S Ste. 850 Seattle, WA 98104 206-324-1521/800-562-2702 www.disabilityrightswa.org
Parents Helping Parents (PHP) An education, training and support organization for parents of children with all types of disabilities. Their mission is to help create a world in which communities are not afraid of differences. Sobrato Center For Nonprofits: 1400 Parkmoor Ave. Ste. 100 San Jose, CA 95126 408-727-5775 www.php.com
Oregon Deaf and Hard of Hearing Services A government organization that provides information on deafness and hearing loss, encourages awareness and leads seminars and conferences on effective communication, deaf culture and assistive technologies. 500 Summer St. NE E-16 Salem, OR 97301 wabi tip: 503-947-5183 www.cms.oregon.gov/dhs/odhhs There are plenty of re-
sources in your area, so don’t be afraid to utilize them. Do research, or ask around!
The Depression and .Bipolar Support Alliance of Oregon An organization whose mission is to improve the lives of people with mood disorders by aiding local support groups, providing education and advocating for mental health services. Headquarters: 2791 Oak Alley Ste. 6 Eugene, OR 97405 541-683-3193 www.dbsaoregon.org
AbilityFirst With 24 locations across Southern California, the organization provides employment, recreational and socialization programs for children and adults with physical and developmental disabilities. 1300 E. Green St. Pasadena, CA 91106 877-768-4600/626-396-1010 Community centers located in Anaheim, Claremont, East LA, Pasadena, Newport Mesa and Westchester, CA. www.abilityfirst.org Epilepsy Support Network of Orange County A nonprofit founded by parents of children with epilepsy; it is made up of support groups to educate and encourage those affected by epilepsy. 9114 Adams Ave. Ste. 288 Huntington Beach, CA 92646 714-916-0456 www.epilepsysupportnet.org JAN2013 23
Athlete Spotlight: OSCAR PISTORIUS
This month, wabi sabi focuses on an athlete who competed in the London 2012 Olympics and Paralympics.
By Brandon Wiggins
WHEN OSCAR Pistorius was born Summer Olym-
pics. Unfortunately, in January 2008 the International Association of Athletics Federations (IAAF), the world governing body for track and field, ruled that Oscar’s prosthetics gave him an unfair advantage and banned him from able-bod- Samkelo Radebe, Zivan Smith and Arnu Fourie celebrate with Oscar at the London 2012 Paralympics after winning the 4 x 100 meter relay. ied competition. Undeterred as always, Oscar unthe South African flag in the closing derwent further testing to prove his ceremony and went on to win two prosthetics offered no unfair advangold medals and a silver medal in the tages, and in May 2008 the ruling 2012 Summer Paralympics. was reversed. At the 2012 Summer In 2007 Oscar told The Daily Olympics in London, Oscar achieved Telegraph that his sporting motto is, his dream and raced for South Africa “You’re not disabled by the disabilin the Men’s 400-meter and Men’s ities you have, you are able by the 4x400-meter relay. He also carried abilities you have.”
FAST FACTS: Oscar wins gold in London with a new Paralympic record of 46.68 seconds in the 400 meter.
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1
Oscar is pursuing a Bachelor of Commerce in business management at the University of Pretoria.
2
Oscar’s leg-swing time while running is 0.284 seconds, while most elite sprinters average .359 seconds.
3
He was included in TIME’s 2008 list of the world’s 100 most influential people.
4
His nicknames include ‘The Blade Runner,’ ‘Oz,’ and ‘The Fastest Man on No Legs.’
PHOTOS BY ALEXANDRE MOREAU AND PAUL BAILEY
with fibular hemimelia — defective leg bones — his parents faced a difficult decision. They could have doctors amputate both of Oscar’s legs below his knees or have him spend his life in a wheelchair. His parents took a chance and opted for the surgery, hoping Oscar could learn to walk with prosthetics. Oscar adapted to his prosthetics and became an active athlete, with a particular passion for water polo and rugby. But, after he shattered his knee playing rugby in June 2003, he took up track running to aid his rehabilitation, and he has been a track runner ever since. The following summer at the Athens Paralympics, at the age of 17, Oscar won the T44 200-meter gold medal and set a new world record in the process. Despite his success in the Paralympics, Oscar always dreamed of competing alongside able-bodied athletes in the
The
ROY H. PARK FELLOWSHIPS
Pictured left to right: Elizabeth Park Fowler, Tetlow Park, Roy H. Park Jr., Trip Park and Laura Park
A World-Changing Idea In 1997, the Triad Foundation of Ithaca, N.Y., made a commitment to UNC that was to transform not only the School of Journalism and Mass Communication, but to make a deep imprint on the field itself. Thanks to the Roy H. Park Fellowships, some 350 professionals have completed their doctoral and master’s degrees in the 15 years between the time Dean Richard Cole announced the program and Dean Susan King presided over the 2012 commencement. The fellows, assuming research, teaching and professional posts in news, technology, advertising, web design and public relations are having, as Cole once predicted, “a domino effect.” Their restless energy and world-changing ideas are reminiscent of the fellowship’s namesake. Roy H. Park, a Dobson, N.C., native who rose from Depression-era farm boy to media titan, reinvented himself through several careers. He wrote for newspapers, worked as a publicist, hatched a lucrative branding campaign with Duncan Hines using outdoor advertising and then embarked on a meteoric rise as CEO of Park Communications, estimated at its zenith to reach one in four U.S. households. Park’s final career turn, that of philanthropist, achieved a different reach. The impulse to leave the world better, more connected, more comprehensible than one found it, is the essence of the fellowship. Through the Park Fellowships, Roy H. Park’s legacy continues.
JOMC.UNC.EDU/PARK
R ER HIGHE
R E ER
EDUCATION Having an intellectual or developmental disability no longer prohibits students from a postsecondary education. Universities across the country are developing programs specifically for students with disabilities in order to provide them with the same opportunities as other students. By Margaret Croom
V
VALERIE STROHL’S daughter has always known she will go to college, no questions asked. Strohl, from Zionsville, Ind., runs United Media Now, a website that uses new media techniques to raise awareness about people living with disabilities. Strohl also guest blogs for FC Michigan once a month. “We’ve always told our daughter ‘You go to college, you get a job, you get married.’ It’s going to be in that order. As a seventh grader she doesn’t think about it much, but she knows it’s going to happen.” Although this is the same thing many parents tell their children, it means a lot more for Sarah Strohl. Why? Because Sarah is a 13-yearold with Down syndrome.
WHERE TO START. 1
Take advantage of college fairs at your child’s school to get acquainted with some of the local universities. Discuss the options available for your student.
2
Use websites like Thinkcollege.net to learn more about specific programs for students with intellectual disabilities. It’s important to be well informed about what’s out there.
3
Look at college brochures with your students and help them understand their options.
4
Take your student on several tours of college campuses while in high school so he/she can get acquainted with what a college feels like.
5
Meet with guidance counselors and college advisors to talk about the special accommodations your student needs.
6
Discuss with your child what he/she wants out of college. What classes does he/she want to take? What experiences are most important?
7
Make sure your child is involved in the whole process because, honestly, it’s all about the student.
Interest in postsecondary education for people with intellectual or developmental disabilities has grown in recent years, as the stigma that used to accompany such disabilities is replaced with thoughts of equal opportunities for all. “You have this first generation of kids that have grown up at home and not been institutionalized,” Strohl said. “They’ve grown up with siblings, and they want to do the same things as their siblings.”
Much as the Civil Rights Act of 1964 outlawed discrimination based on race, ethnicity, religion and sex, the Americans with Disabilities Act (ADA) of 1990 gives civil rights protections to individuals with intellectual or developmental disabilities. Changes in the Higher Education Opportunity Act in 2008 resulted in federal grants that funded programs such as Think College at the University
Can’t get enough
wabisabi
28 wabisabi
?
of Massachusetts, Boston, Institute for Community Inclusion. Parents with disabled children want them to have the same opportunities as every other child. They want the chance for their child to grow as a person and an individual. An important part of this process is going to college. “This is my favorite word. Meaningful life. Everybody wants a meaningful life.You want to be happy and stuff.
PHOTO BY katy denning
new opportunities
THINK COLLEGE!
Get a head start on finding college programs for your student with disabilities. Research:
Postsecondary education for the intellectually disabled is still relatively new. Think College conducts research to better understand how to help students be more successful in their education at a higher level. Students, parents and teachers all participate in the research, since all are part of the educational process.
Training and Technical Assistance: Think College uses print publications, seminars and the Internet to educate students, parents and teachers on new advancements in postsecondary education for the intellectually disabled.
dissemination:
A key part of making postsecondary education for the intellectually disabled a norm in the educational system is sharing the wealth of knowledge the initiative has developed through the Internet, publications and face-to-face.
source: www.thinkcollege.net
And that doesn’t always look the same for every person,” Strohl said. “For my daughter personally, she will get a job because I’m going to give her enough experiences to be suited for it. I want her to be well-rounded, and her college experience is just one part of that.” With increased interest in postsecondary education comes the demand for information about programs that cater to the specific needs of people with disabilities. “I have been working with people with developmental disabilities for most of my career in one way or another,” said Cate Weir, the project coordinator for Think College. “I was also a college professor and disability services coordinator, and became aware that people with ID (intellectual disabilities) did not have an
opportunity to continue their educadistinction highlights one of the main tion after high school. This became elements of college for all students – of great interest to me to try to do the opportunity for independence. something about that, and I worked on Right away it is clear that this orgasome projects related to this area.” nization seeks to provide intellectually It’s always hard to watch your childisabled people with the same oppordren go off to college, but for parents tunities as everyone else. of children with disabilities, it can be harder because they have to relinVisit www.thinkcollege.net to quish the caretaker role they have research and make decisions been in for so long with the hope about college choices for that their loved one can face the world without them. your child with disabilities. That’s where programs like Think College come into the picture. “Think College was started as a result of three federal grants all related to students with ID going to college, think college! primarily because college had become The first things you notice when a very important idea for students with you log onto thinkcollege.net are the ID, and they and their parents really tabs at the top of the page labeled wanted there to be more opportuni“for students” and “for families.” This
Go digital! download our iPad app
The wabi sabi digital edition , available in the App Store, includes special bonus material from extra photos and videos to exciting interactive features. JAN2013 29
general requirements Requirements for universities that offer programs for students with ID vary a lot. Cate Weir suggests several things most schools ask for.
Documentation of an intellectual disability. A basic level of safety skills. The student wants to go to college to get a good job. A high school diploma is NOT part of the requirements for most, if not all, programs. source: kate weir
ties,” Weir said. “When the Higher Education Act was funded in 2010, Think College became the National Coordinating Center in this area.” Weir was hired as the project coordinator for Think College in October 2008. The most impressive part of the Think College website is the college search option. It provides parents and children with 199 different programs across the country to choose from. These programs are offered at state universities; small, liberal arts colleges; and community colleges, so there is no shortage of diverse experiences. Families are able to sit down together and go through a list of programs to find the one that best suits their child. “Every child has certain gifts,” Strohl said. “For my daughter, I was looking at inclusion because she’s very, very social and she likes to be around people. “Can she live in a dorm? Can she actually go into classrooms? What are they going to do to be
sure that she meets people and actually gets involved? Are they going to let her actually have the experience of college? This is for me personally. I’m not going to go to a program where all the kids with a disability are in the same room, because I don’t do that now.”
MORE RESOURCES Finding the right college is important for your student to succeed and flourish in a different atmosphere. While Think College does offer a wide variety of programs to choose from, it is not the only resource out there.
“Every child has certain gifts. I was looking at inclusion because she’s very, very social.” The Department of Education’s website offers a college-search function that matches students with colleges that fit them best. “I think most students make the choice the same way other students do – close to home or a bit away? Residential or live at home? How long is
programs are among those that wabi. These offer educational opportunities and special picks: accommodations for students with disabilities. St. Andrews University
Boston University
Laurinburg, N.C.
Boston, Mass.
Disability Services Office: www.sapc.edu/access/index.php
Office of Disability Services: (617) 353 - 3658 access@bu.edu
30 wabisabi
Ohio State University
UC Los Angeles
University of Florida
Columbus, Ohio Office for Disability Services: ods@osu.edu (614) 292 - 3307
Gainesville, Fla. Los Angeles, Calif. (352) 392 - 8565 www.dso.ufl www.osd.ucla.edu .edu/drc
the program? Is it in a rural area or a city? How big is the campus? What supports are available? We try to include that info in our College Search on our website,” Weir said. “For many students, there are not any options that are close to home, and there are not enough programs that offer residential services.” It’s important to understand that while students with disabilities have equal access to secondary education thanks to the ADA, some students may require personal assistance when it comes to living conditions or study habits. Colleges are not required to provide students with personal help, and many do not. The website studentswithdisabilities.com,categorizes colleges in a chart format, making it easy to sort which ones provide the help your student requires. Make sure you ask about the services each college offers students with disabilities. Some may be willing to provide the necessary care, but only if you take the initiative and ask about it. Each student wants something different in his or her college experience,
Hope College
BY THE NUMBERS
200
college programs in the United States are currently serving students with intellectual disabilities.
young adults are participating in established college programs for students with intellectual disabilities.
The average college program for students with intellectual disabilities has between 10 and 200 students. source: kate weir
and parents have specific critera they want a school to meet. Doing research on individual schools, while time consuming, is a sure way to find out exactly what opportunities are available for your student. “University of Kentucky lets kids live in dorms,” Strohl said. “I love that. Some of the programs have paid internships. The thing that’s important in this is it doesn’t matter how much money your family makes
University of Houston
Holland, Mich. Disability Services (616) 395 - 7805 www.hope.edu/ student/disabled
2,000
Houston, Texas (713) 743 - 5400 uhcsd@mail.uh.edu
Indiana University
or what your child is like. There is a program out there for your specific child.” Talking to your high school guidance counselor and visiting blogs online are ways to find the best college for your student. The best advice Weir can give to students with intellectual disabilities is to know that college is possible. “Students should prepare for college if that is what they want to do,”Weir said. w
University of Kentucky
Montana State University
Bloomington, Ind.
Lexington, Ky.
Bozeman, Mont.
Matthew Springer (812) 941 - 2243 www.ius.edy/disabilityservices
(859) 257 - 2754 www.uky.edu/studentaffairs/disabilityresourcecenter/
Disability Services (406) 994 - 2824 drv@montana.edu www.montana.edu
source: kate weir, valerie strohl, department of education, www.thinkcollege.net, www.disabilityfriendlycolleges.com
JAN2013 31
Peter Korzick (left) and Philip Blount work on improving job skills in a Bridges Program classroom.
BUILDING
BRIDGES by Brandon Wiggins
At the Bridges Program of Philips Academy in Charlotte, educators work to provide learning-disabled children with jobs—and, more important, a future.
All Photos Courtesy of The Bridges Program
l
If you go to the Flying Biscuit Cafe on Rea Road in Charlotte, N.C., on Monday or Wednesday afternoons, you might see Philip Blount. Philip is 20 years old, and, like a lot of 20-yearolds, works part time, serving as busboy, cleaning and even occasionally playing host. Like a lot of 20-yearolds, Philip uses public transportation, relying on Charlotte’s bus system to get to and from work. Unlike a lot of 20-year-olds, however, Philip has never been to, nor will he ever go to, a four-year-college. This is because Philip has learning disabilities pronounced enough that he could never go to a regular high school. Fortunately, thanks to the Bridges Program of Philips Academy, these disabilities won’t hold Philip back from getting a job and being out on his own. “We knew from the beginning, when he pretty much came into the world,” said Philip’s mother Jane Blount, regarding her son’s disabilities.
Philip has been diagnosed with attention deficit hyperactivity disorder (ADHD) and “developmental delays,” though Blount said they don’t really have a name for what that entails. “Initially, you want answers...what is it, what does that mean, what’s he going to be able to do and not do...and we never got that answer,” Blount said. Philip began his academic career at Dore Academy in Charlotte, another school geared toward children with learning disabilities. But Dore Academy is a four-year-college preparatory school, and the Blounts realized that Philip wouldn’t be able to make it at a four-year-college. They began looking for schools geared toward kids with Philip’s level of disabilities, but quickly ran into a major obstacle: “There wasn’t anything available for kids like Philip,” said Philip’s father, Phil Blount. So the Blounts decided to take matters into their own hands. In June 2005, the Blounts founded Philips
Academy with educator Barbara Parrish to provide an education for kids who, according to one of the school’s brochures, deal with, “ . . . complex learning disabilities, developmental disabilities, social communication disorders, cognitive disorders or other related conditions that impact academic and life skills.” The school teaches children in grades six to 12 through a curriculum centered on small classrooms with highly individualized teaching. Although the Blounts were happy with the success of Philips Academy, they realized they still needed something for kids like Philip who couldn’t move on to four-year colleges. “Once they graduate from high school, what then? They’re still not ready for independent living, for any type of career or having a job or being able to support themselves. So that’s when we knew we needed to go to the next step and start Bridges,” Phil Blount said. JAN2013 33
Brittany Wiggins (left) and Peter Korzik are both graduates of Philips Academy and Bridges students. Brittany has worked at Chick-fil-A through the Bridges Program.
Once again, the Blounts had hoped to find what Philip needed, a type of post-graduate job training program in the area. But they couldn’t find one, so they took matters into their own hands. The Blounts reached out to Matt Hull in June 2009 to help put the Bridges Program together. For Matt Hull, helping those with developmental disabilities has been a lifelong passion. Growing up, Hull had a cousin with Down syndrome, and he volunteered at a home for severely handicapped children. After college, at the suggestion of a former roommate, he began working with disabled individuals again. Before becoming the director of the Bridges Program, Hull worked for a local agency called Residential and Support Services (RSS, now called InReach) to oversee its group homes. In addition to these roles, Hull was, and remains, a Special Olympics coach, working with basketball and track and field. One of his track and field athletes was none other than Philip Blount. 34 wabisabi
“I got to know [Phil and Jane] and I was approached, when they were ready to begin this program, to see if it was something that was feasible and workable, and I was intrigued by the idea,” Hull said. So Hull came to take over the Bridges Program and build it from the ground up. “He understood what we were trying to do,” Jane Blount said of Hull, “ . . . he understood that, yes, these years after high school are really important.”
HOW IT WORKS For the developmentally disabled, finding a quality vocational training and job placement program is critical. In March 2011, Sharon Lewis, the Commissioner of the Administration on Developmental Disabilities, gave a statement to the U.S. Senate Committee on Health, Education, Labor and Pensions. In it, she revealed that only 17 percent of people with developmental disabilities are employed, compared to 63 percent of those without disabilities. In order to get started, Hull re-
“We’re very individualized for each student, because we have the flexibility to change the program.” searched programs similar to what he wanted Bridges to be, such as ClemsonLIFE, a program for the developmentally disabled housed at Clemson University in South Carolina, and The Horizons School, a school in Birmingham, Ala., that is geared toward job training and post-high school education for the developmentally disabled. Bridges is designed to be a twoyear-program, but that can vary from student to student. The program, which started out with six students in the fall of 2009, prides itself on being able to offer each student an individualized course of study. “We’re very individualized for each student, because we have the flexibility to change the program,” Hull says. Students attending Bridges must have completed high school. While
some of the students attended Philips Academy, the program accepts students who graduated from any high school (at least one student graduated from Myers Park High School, one of the most prestigious public schools in the Charlotte area). Once it’s time for the students to begin their education at Bridges, the first challenge is teaching these students – many of whom have never had any semblance of independence before – what it means to be on their own. “The very first semester is really getting them used to being an adult,” Hull said of the curriculum for the students, “ . . . because up until then many times the families have taken care of everything for their child. “So we spend a very concentrated amount of time, and it may be more than one semester, but at least for the first semester, we focus on them becoming the adults that they are, and taking ownership of their life.” Hull said that many of these children have relied on parents to interact with teachers for them, to make their meals and get them up in the morning. Paul Slane, the director of career development at Bridges, points out that most of these students have no real work experience outside the home, and none of them have any paid experience. Hull said that the school makes it a point to treat students like adults. “One important note is that we don’t run ourselves like a school. We have faculty, but we’re more looked at as supervisors, and the students are employees, because the mindset that students have to have when they go into the workplace has got to be consistent.” With the goal of job placement in mind, much of the teaching during the first semester is geared toward how to succeed in job interviews and in the workplace. “Prepping them for that first interview is a lot of what we do in the classroom setting,” Slane said. Slane works with the students on such basic things as what to wear,
what’s acceptable at what job locations and on proper etiquette in the interview process, such as having a firm handshake, looking employers in the eyes, greeting them politely when they arrive and thanking them for the opportunity when they leave.
“We focus on them becoming the adults that they are, and taking ownership of their life.” Beyond that, Slane talks with the students about what to do and what not to do in work relationships such as the employer-employee relationship. He tells students that rule No. 1 is “safety first,” and to that end, classes go over the student’s legal worker’s rights and Occupational Safety and Health regulations. The program also brings job managers to campus to talk to the students about what to expect.
Additional skills that Bridges helps teach the students include time management, accepting more responsibility and soft skills such as how to relate to supervisors and co-workers, being prompt, having integrity and developing a good work ethic. After the first semester, the focus then shifts toward job placement. Essential to Bridge’s success in arranging these opportunities is Slane, who takes responsibility for reaching out to businesses in the area and developing partnerships. Slane generally goes to meet managers of various local businesses and tell them about the Bridges Program and what the program is trying to accomplish. He also tells them, of course, that these students can do quality work for the managers. Slane developed many of these early relationships alone, but he prefers to take the students with him to talk about the school themselves when he meets the managers. He likes this
Kathryn Clardy, another Bridges student, working at Showmars.
JAN2013 35
approach in part because it is a good opportunity for the students to hone their social skills, and in part because, in his words, “I found a much higher success rate when the students can go out and tell [the managers] a little bit about the program.” Although Slane said he’s had meetings with managers in which he’s been able to tell that they won’t be able to develop a sustainable business relationship, it’s never been an overall negative experience. “We’ve been received very well; there’s never been anybody that’s right out said no,” he said, “ . . . they’ve been understanding, and even if we don’t develop a relationship, it’s a positive experience for the students.” So far, Bridges has just over 30 business partners in the community, according to Hull. The majority of these partners are restaurants, with Chick-fil-A being one of the program’s biggest supporters. To start the placement process, Bridges places students in volunteer opportunities, getting them their first taste of what it is like to be an employee. In the second year, the program starts placing students into what it calls internships, where students can work in part time employment with the program’s business partners. “[An internship] gives the student an opportunity, one, to prove them-
CROSSING THE BRIDGE Breaking down the Bridges Program, step-by-step.
selves, and, two, to see if it’s something they truly want to do. If they want to do it, and they’re good at it, and they’ve proven themselves, all we ask of our partners is that they give them the same consideration as they would any applicant for hire. We’ll help the student get the application, fill out the application, go through the interview process, and hopefully they have the opportunity to get hired,” Hull said.
“We’re really that stepping stone to independence.” Although resume building is obviously a key goal of the program, Slane said the most important thing is giving the students a positive work experience, as it is essential for this population to have positive experiences early on. “You have to have an environment where the manager and the other people, they get it,” said Jane Blount. Slane said that some managers do treat the students more delicately because of their disability. “My preference is that they treat them the same as they would any other employee, and some of our partners do understand that,” Slane said. He said equal treatment is important because once
Once admitted, students will enroll in a two-year curriculum that includes 30 hours a week of classes and work/field placement.
the students are working on their own away from Bridges, they will be held to the same standard as any other employee. The hardest part of the job, according to Slane, is figuring out which students fit which programs. To do that, it’s necessary to know what their strengths and weaknesses are and what they like to do so that the program can find the best location for them. Of course, some students are harder to find a good fit for than others. While the students are involved in their part-time work placements, they still work in the classroom on more general life skills, including using cell phones to plan their routines, money management and cooking and preparing meals. Public transportation is also a big focus of the program, as students are taught to take the bus to and from campus to their jobs. In addition, the program places a heavy emphasis on helping the kids enrich their social lives. “Many of the students have school friends and church friends, but we’re hoping that they can connect with some people at work . . . and then also adult groups out there too, like self-advocate groups, or other hobbies or likes that they may have, so branching out and expanding their social network,” said Hull. “So that takes a little more en-
Bridges students will have real world learning and experiences and participate in community partnerships with area businesses and agencies.
couragement, and sometimes faculty have to really facilitate that by taking them to something, to introduce it, and then hopefully they make those connections and we’ll help introduce them to people. Sometimes it just takes off, and other times it’s much more difficult. But that’s one of our goals with our folks, is to stay in touch with the friends that they’ve made, to maintain those friendships and to make new friends.” Jane Blount likes that emphasis on social life. “What’s good, too, about the Bridges program is it encourages everyone to get involved in the community . . . because that’s a big part of being independent and having a full life,” she said. “Because it is difficult for a young adult with disabilities to be involved.” As far as job placement goes, the program has been a success. So far, 12 out of the program’s 17 students were hired after the end of the program. For Philip Blount, who is in his second year in the Bridges Program, the experience has certainly been rewarding. Philip has two jobs now, his Monday Wednesday job at Flying Biscuit Cafe, as well as a job at Dee Jai Thai restaurant Tuesday and Thursday evenings. His parents say they think he can move on to a full-time job after he finishes the program. “We’ve been fairly successful in
Students will be in small group classes and follow an individualized plan for career and personal development.
students who have applied themselves . . . they do get hired,” said Hull. “Generally it’s part time, but that’s really what they can handle at this point in their lives.” “We’re really that stepping stone to independence,” said Hull. “We’re teaching them all the tools that they need to succeed, and ultimately it’s up to that student to use those tools to go as far as they want.”
LOOKING AHEAD Even after students leave the Bridges Program, the program tries to offer them follow-up support and stay connected with former students, something Hull said differentiates Bridges from other programs such as ClemsonLIFE. Overall, Hull emphasized that the process of developing true independence continues for these students even after they leave Bridges. Being able to live on their own, for instance, is not something many of them can handle until their mid-20s. However, the Bridges Program is already thinking about residential training as another facet of its students’ educations. Last spring, the program started a Residential Transition Training component. For four nights a week, every other week, three of the students would live with a supervisor in a house away from their
Students will participate in weekly sessions with Bridges sta≠ to set goals, manage community supports and track progress.
families, in order to learn how to take care of themselves on their own. This fall, they’ve found a new home right next to campus that they’ve begun renting and expanded the program to a weekly basis. “Eventually, I think Bridges may end up being a residential program with a vocational component, versus a vocational program with a residential component,” Hull said. One of the students staying in the group home last spring was Philip Blount, and, according to his parents, it was a great experience for him. So much so, in fact, that they’ve purchased a condominium for him to stay in with another Bridges student, and they are in the process of getting it set up for him to move into sometime this spring. “You go to all these experts, and they tell you what your child could do and more so what they couldn’t do, but we as parents believed otherwise,” Phil Blount said. “We had in our mind what [Philip] could do, and it’s a lot more than what the doctors thought he could do.” Thanks to the Bridges Program, Philip has proved them right. Soon, he will be living independently, holding down a steady job, enabling him to be a contributor to his community at large. Just like most other people in their early 20s. w
Following completion of the program, Bridges students may choose to continue their chosen career or continue their education at a community college.
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[GEEKS] saving; THE WORLD world;
the
GEEKS MAKING
A BIT BETTER
is the tagline on Gary Bishop’s website. His playful attitude extends into his office where, in place of a computer chair, a giant exercise ball leans against his desk. You can tell his profession with a glance around the room — or you can tell that he really likes computers. Scattered papers bury all surfaces, including some areas of the floor. But the computer is accessible, and its screen’s projection covers an entire wall. Bishop, a computer science profes40 wabisabi
sor at the University of North Carolina at Chapel Hill, researches and codes computer programs to make technology more accessible to people with disabilities. His desire to help the disabled initially started with the idea of creating a telephone for deaf and hard of hearing people. But after suffering the defeat of not finding a deaf community in the area to approach with his potential invention, he gave up on this idea. When he met blind student Jason Morris while walking around Chapel Hill, his research took a different direction. “I was out walking on campus and I see a blind guy, and I want to say, ‘Hi’” he said. “But it seemed a little awkward to say, ‘Hi, I notice you’re blind.’ So I walk past him and he stopped me to
ask what street he was on.” After giving him directions, Bishop struck up a conversation with Morris, a classics major at UNC, and discovered that he was working on a project to make ancient world maps accessible to the blind. This conversation tickled Bishop’s altruistic tendency, and he immediately offered his services to the project — and Morris couldn’t have been happier about it. “I was ecstatic when Gary offered to work together since it allowed a whole new range of materials, resources and talent to truly benefit others in a sustained way,” Morris said. One semester later, Bishop and his students had developed an accessible map of Britain under Roman rule. Bishop recalled one of his students re-
PHOTOS BY REBECCA YAN AND UNC DEPARTMENT OF COMPUTER SCIENCE
UNC alum Jason Morris believes “Gary is a creative, innovative and bold teacher in the field of computer science to whom others should look for an example of how to push the envelope on technology.”
void(1,2,3);System.out.println
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marking: “This is the only thing I have done in college that mattered.” Peter Parente was one of the students who helped realize Bishop’s dream of building a better environment for the blind by joining the team of students working on making maps accessible. Before meeting Bishop, Parente had never considered the possibilities computer science could offer the disabled. “He told me a story about a chance meeting with a blind graduate student, Jason Morris, who was facing difficulty in his studies because of a lack of Braille maps,” Parente said. “I could hear the passion in his voice, even to help just one student, and I immediately knew I wanted to be a part of it.” Parente worked on enabling projects with Bishop for the next six years. After receiving his Ph.D. in computer science in 2008, Parente continues to work with Bishop as a hobby when time permits. He said working with people with visual and mobility disabilities has changed his philosophy on life and programming. “I constantly think about how to apply new technology to help people. I try to make time for enabling technology pet projects,” he said. Through Morris, Bishop met Diane Brauner, an orientation and mobility specialist. While teaching visually impaired students how to travel more self-sufficiently, she looks for reasons the students are struggling and where their educational gaps may be. After teaming up with Bishop, she told him that, while the other children were allowed time on the computer, her blind students had nothing to do because the computers had no features or programs to make them accessible. “That’s when we wrote ‘Hark the Sound,’ our first game for blind kids,” Bishop said. Together, Bishop and Brauner created and launched the computer program. “Hark the Sound” utilizes the arrow keys and speech software to al-
(“pt2”)
low children to play educational games without needing to see the screen. “‘Hark the Sound’ gave my kindergarten students the opportunity to participate in computer class with their peers,” Brauner said. The game’s success soon became global. Bishop received letters of gratitude from across the Pacific — written in Braille, of course.
“The fact that it doesn’t cost a disabled person anything more than their sighted counterpart to obtain and use the computer is a huge leap in thinking.” Bishop and Parente also worked on an exhibit for blind children called Maze Day, where visually impaired students are invited to try out the latest inventions of Bishop and his students. The UNC computer science department hosts the event every spring for about 50 to 150 K-12 students from all over the state. “I’ve had the privilege to help out at Maze Day numerous times during my years at UNC,” Parente said. “It was always a wonderful experience to see the kids enjoying themselves, watching their faces light up when they realize ‘Yes, I can play this game’ or ‘Wow, someone wrote this for ME.’” Bishop said Maze Day gives the kids a chance to explore technology as they haven’t been able to before. “We have had teachers bring kids to Maze
int
Day and say, ‘This is the first time I’ve seen this child smile,’” Bishop said. After his first enabling program was up and running, he began developing software to include an even wider group of individuals unable to explore the world of technology – those with mobility disabilities. To fill the gap, Bishop established “Tar Heel Reader,” a platform to help people of all ages attain literacy. “You learn to read, and that changes the world,” Bishop said. He recognized that, for some people with disabilities, acquiring the ability to read isn’t always as simple as putting a book in a toddler’s hand and helping him or her pronounce the syllables. “Say you’re a 12-year-old and you’ve got cerebral palsy,” Bishop said. “When you can’t talk very well or use your hands very well, it’s very easy for people to label you as mentally retarded. “So, when you’re learning to read, you need that big book you had when you were three with the big picture and five words on each page.” But where can one find a book that’s both accessible and interesting to a 12-year-old? That’s where Bishop comes in. It’s rare to find a multilingual book
Maze Day gives children a chance to experience Bishop’s programs firsthand.
JAN2013 41
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Special Guest!
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Maze Day is held for blind and visually impaired K-12 students and their teachers. The annual event allows students to try out and enjoy computer applications developed especially for them.
This year, Maze Day will be held 26 April 2013 from 9 a.m. until 2 p.m. in Sitterson Hall on the UNC Chapel Hill campus. Attendees will receive a free lunch in addition to a day full of fun activities. Visit Gary Bishop’s blog at cs.unc.edu/~gb/blog for more info!
Special Guest!
UNC-CH football player TJ Thorpe stops by Maze Day to visit participants and check out the games.
42 wabisabi
Electric Tunnels is part of “Hark the Sound,” a collection of sound-based games for kids who are visually impaired or blind.
collection that can accommodate fiction lovers, Taylor Swift fanatics and ceiling fan enthusiasts alike. But that is exactly what Bishop has created in “Tar Heel Reader.” With “Tar Heel Reader,” people can use Flickr, an extensive photo collection uploaded from all over the Web, as well as other Web-based programs, to write and publish accessible e-books about every subject imaginable. The books are written for, and by, all ages — and are about a wide range of topics, providing something for everyone. When Bishop discovered the need for an accessible library, he spent three days programming “like mad” and produced a working prototype of “Tar Heel Reader.” The same night he finished it, a literary council member in Australia used the prototype in her class. They began creating books immediately. After searching the site’s database for an interesting book, users can have the books read to them by a variety of voices and are able to turn the page with the flick of a switch. For kids with certain disabilities, turning the book page by page can be a challenge. So Bishop positioned a switch by the head, knee or hand of individuals with a mobility disability
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PHOTOS BY UNC DEPARTMENT OF COMPUTER SCIENCE
{ anArray[i] = i; } to progress through the book, one page at a time. Although the books undergo a review process that ensures they have a reasonable amount of educational quality, the magic of the program is that it makes it easy for anyone to put together a book about anything they like. Diane Brauner said her students love the new opportunities available to them through “Tar Heel Reader.” But it doesn’t cater only to visually impaired students. Brauner said the program is flexible enough to help with all kinds of disabilities. “I have created a book using pictures, words and sign language to be used with several deaf students,” she said. Bishop said the format of “Tar Heel Reader” works well because it feels modern and attractive to children, and is continuously being updated with more content. “There will be something there today that wasn’t there yesterday,” Bishop said. Today, “Tar Heel Reader” is available in 176 countries and 20 languages. In October 2012, Tar Heel Reader surpassed the 4 million mark of number of books read. “There are children who can read today because of ‘Tar Heel Reader,’” Bishop said. Before Bishop’s programs, Jason Morris said there was a limited amount of enabling technology available — and none of them were accessible for free. “When I met Gary more than a decade ago, there were really only two screen reading programs available: JAWS and Window-Eyes. Both were confined to the Microsoft Windows operating system and took months to learn how to use,” he said. At the time, the cost of each program was about $800. Morris said that although Bishop’s technology isn’t as flawless as those built by a full software developing team, “the fact that it doesn’t cost a
disabled person anything more than their sighted counterpart to obtain and use the computer is a huge leap in thinking.” Brauner also appreciates Bishop’s ability to apply existing technology to assist in making the world, both physical and virtual, available to everyone. “In a world where most professionals are driven by money, Gary demonstrates compassion for students with disabilities — a group that is often ignored,” she said. “Gary not only teaches the fundamentals of computer science to his students, but he also brings their attention to the unique needs of students with disabilities.”
“We have had teachers bring kids to Maze Day and say, ‘This is the first time I’ve seen this child smile.’” Brauner said that many of the students Bishop works with carry their interest in enabling technology with them into the workforce, like building accessibility features into their software projects. By introducing a younger generation to the importance of reaching out to people with disabilities, his mission to help has the potential to carry well into the future. “Gary’s impact, which started as a small ripple effect, has surged to tidal For those who are mobility impaired, Gary has created programs that employ joysticks and other alternatives to keyboards.
wave proportions,” said Brauner. Currently, Bishop is working on developing iPad and mobile versions of “Tar Heel Reader” to expand its accessibility even further. He and his students also have some musical games in the making. Bishop is looking into making the “Guitar Hero” controller a vehicle for music creation instead of using it for only imitation of famous works. “‘Move To The Music’ will be like ‘Dance, Dance Revolution’ for blind kids,” Bishop said. Bishop said the most positive impact he has seen as a result of his work is the higher standard of expectations being set for children with disabilities. “Getting kids accustomed to understanding and using technology raises peoples’ expectations of them,” Bishop said. “And we don’t want to have low expectations – we want them to have high expectations.” Bishop said that, when the bar is raised, children with disabilities tend to rise to meet it.
logging in, reaching out Families and people with disabilities can often feel isolated, with no one to reach out to. But with the rise of social networks, they can connect online, leading to supportive relationships on the Web and in person. By Florence Bryan
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WHEN ALICE-LYLE HICKSON’S AN ARRAY OF RESOURCES
youngest son, William, was diagnosed with mitochondrial disease in 2007, a year after he was born, she wasn’t sure where to turn. Hickson, who lives in Columbia, S.C., worried it would be difficult to find a support system of families who also have children with mitochondrial disease. With two other children to take care of, she didn’t know if she would have enough time to reach out for advice, guidance and companionship. Mitochondrial disease is caused by dysfunctional mitochondria — the parts of cells that generate most of the energy for the body — and has a wide range of severity levels and symptoms, including muscle weakness, developmental delays and susceptibility to infections, according to the United Mitochondrial Disease Foundation. In William’s case, the disease affects his development, and, at 5 years old, he has the physical and mental abilities of an infant. Unlike diseases such as autism and Down syndrome, mitochondrial disease has not received much attention and publicity. “You don’t just meet people on the street with kids who have mitochondrial disease,” Hickson said. “Even though mitochondrial disease is really not that rare — it’s one in 2000 — but it’s just not very well known.” Faced with this challenge, Hickson decided to log on and seek out friendships in the online community, especially through her Facebook account, which she created in September 2008. “To be able to connect with people — even if it’s just through Facebook — who know what you’re going through, it’s nice to know that they’re there, even if you don’t see them or talk to them every day,” Hickson said.
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Parents of children with disabilities, often turn to Facebook as an online tool to seek out others in similar situations, because many are familiar with the site. With more than 1 billion active users per month as of September 2012, according to the site’s recently released statistics, Facebook provides an enormous network of human resources.
“It’s nice to know that they’re there, even if you don’t see them or talk to them every day.” Hickson said she doesn’t solely use Facebook to spread awareness and find other people affected by mitochondrial disease, but it has been a helpful tool to do so. One of the first Facebook groups she joined was the United Mitochondrial Disease Foundation. On any given day, her page includes status updates on her family or William’s health, pictures of her children and links to fundraisers for mitochondrial disease. Since she is not limited by geographical boundaries when using Facebook, Hickson has met parents of children with mitochondrial disease from across the nation and beyond, even becoming Facebook friends with a person from Canada — although she said they haven’t had much communication. Instead of answering a random advertisement, Hickson used her social network connections and bought a wheelchair-accessible van from a family whose child with a disability no longer needed it.
“Of course I would much rather buy a van through somebody like that,” she said. Kris Shields, who has two children with low-incidence disabilities, or disabilities that are less common in a given community, said she benefits from the breadth of social networks, connecting with parents from Washington, Michigan and Pennsylvania. “It’s amazing the information you can get,” she said. “Just a few years ago, families wouldn’t have had that.” Like Hickson, Shields has a 7-yearold son with mitochondrial disease. Because of the variety of ways mitochondrial disease presents itself, it can be hard to find another family whose chil d has very similar symptoms. But through social networks, Shields has been able to connect with families affected by the disease beyond her hometown of Charlotte, N.C. “You can get so specific, it’s unreal,” she said. This specificity is also important to her because Shields’ 13-year-old daughter has an undiagnosed condition with various complications, including blindness, mild hearing loss, a blood disorder, scoliosis and tremors. Shields has been able to find doctors and other resources for her children, including a mitochondrial disease specialist in Atlanta and another in South Carolina, through local and national support groups on Facebook and Yahoo. Shields said she belongs to online groups with input from doctors, specialists and therapists so she can consult professionals directly about complications her children are having. She said she appreciates the advice she receives from groups with profes-
sionals, but also likes to maintain membership in online groups composed entirely of parents. “There are times when you need to go to parents to vent and speak and not have someone try to come and fix it.”
TAILORED TO NEEDS Certain social networking sites are specifically tailored for individuals and families with disabilities and other needs. Michael Radicone, a behavioral therapist who focuses on special education, created one such website called eSpecialMatch.com. On this social network, users can create a profile, which they then use to connect with other users, post stories and pictures, blog with therapists, create events and seek out resources in their area. Radicone, who is based in Long Island, N.Y., started the site in 2008 to connect families with one another. Since then, it has grown to about 3,000 users — 1,000 of whom are highly active. Users include relatives of people with disabilities and businesses that offer services for people with disabilities. Radicone said he hopes that sharing knowledge on the site about the numerous quality services available in states such as New York will empower people to ask for more disability rights and services in their home states. “If families know what everyone else has, then they are more apt to fight for what they can get,” he said. Most of the users on eSpecialMatch.com are affected by autism
Check out these sites that offer a forum for people to share tips and advice about living with disabilities or caring for someone with a disability. DISABILITY SOCIAL NETWORK www.disabledsocialnetwork.com Users can chat, participate in forums, blog and post videos and pictures on this site, which is also integrated with Facebook, Twitter and Flickr. The site is tailored for individuals with disabilities. FAMILY CONNECTIONS www.familycms.com This private social networking site facilitates connections between relatives as well as other friends. Features include a family tree that lets users map out family history and protected exchanges of information. PARLERAI www.parlerai.com Users create a private network of family, friends and caregivers of a child with disabilities and exchange information, including medical history and appointments, through this secure online site. Features include symbols and pictures that help parents and relatives communicate with developmentally delayed children.
CARINGBRIDGE www.caringbridge.org Users create a personal, protected site to share news about a health event with family and friends. Features include a calendar for people to schedule and coordinate ways to help the family by providing meals and other services.
THE MOMMIES NETWORK www.themommiesnetwork.org Mothers with children of all abilities use the national site to connect with other mothers who live in their community. The site has private forums specifically for mothers of children with disabilities. ESPECIALMATCH.COM www.especialmatch.com Users create profiles similar to those on generic social networking sites to interact with others, share information and create groups and events. The network includes individuals with disabilities, family and friends of adults and children with disabilities, and businesses and professionals who offer services to people with disabilities.
BLUEVERSE.NET www.blueverse.net People who are living with disabilities or staying in the hospital for an extended period can create profiles to connect with others in similar situations on this secure site through wall posts and groups. The site is sponsored by nonprofit Blue Redefined, which is dedicated to expanding social and entertainment opportunities for people with disabilities.
in some way, but he welcomes people with all kinds of disabilities. Radicone said he visits several conferences held by autism advocacy organizations to share information about the site and promote its usefulness. About a year and a half ago Radicone added another feature to the site — user profiles for adults with disabilities. These profiles have most of the same features as the other eSpecialMatch.com profiles, except a few parts of the profile’s layout are locked in to make it easier to use. Radicone is not alone in realizing that social media sites need to be more accessible to people with disabilities. A 2012 study based on feedback from 49 people collected by Media Access Australia, an organization
trying to improve social media accessibility for disabled people, found that sites like Facebook, LinkedIn and Twitter were inaccessible to some degree for people with disabilities.
“If families know what everyone else has, then they are more apt to fight for what they can get.” Despite some sites’ willingness to accommodate more users, the review found that many lacked features, such as compatibility with assistive technology products and captioned video, that would make the sites userfriendly for those with disabilities.
Sites such as eSpecialMatch.com and disabilitysocialnetwork.com have emerged in an effort to meet the needs of people with disabilities. Another site, Parlerai, offers unique features that allow parents to communicate with their disabled children using pictures and symbols. Created by the parents of a young girl with disabilities, the carefully protected site also has functions for managing a child’s medical records, scheduling appointments and communicating directly with health professionals.
FROM ONLINE TO IN-PERSON The connections that people and families affected by disabilities build on social networks go beyond the computer screen and lead to in-per-
A WEB OF SUPPORT Social networks open up a wide range of resources on the Web for people with disabilities. By providing ways to reach out to numerous people, including extended family, friends and doctors, social networks are revolutionizing the support systems available for people with disabilities. Here is an example of one such support system.
TEACHERS
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SOCIAL NETWORKS
PARENTS
FUNDRAISING GROUPS
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FRIENDS
DOCTORS
son meetings and friendships. Tara Pitts, who has a 4-yearold son with autism, said she uses Family Connections, a secure social networking site, to meet other parents with autistic children who live near her home in Columbia, S.C. “They [family connections] help place you with families if the child has the same diagnosis,” she said. Parents and children meet once a month at events that have been planned on the site. Shields said she uses the Mommies Network, a nonprofit organization that connects mothers who live in the same community. “They have a special needs forum, so that was instrumental, and I connected with another mom of a child who was blind,” she said. The two mothers grew close and have since become advocates for blind services in their community, starting an after-school program that serves about 12 blind children in the Charlotte-Mecklenburg School System. They also received a grant to send 11 teachers and administrators to the National Federation for the Blind to learn how to use technology to more effectively teach blind students. “Both of those were direct results of this mom and I being part of an online group and connecting with one another and realizing what a need there was,” Shields said. “If you can connect with a group of people, that’s when you can really start to facilitate change.” Hickson, Pitts and Shields have also each used social networks to recruit volunteers and raise donations for fundraisers that benefit people with disabilities.
ARISING CHALLENGES Although social networks have become useful tools for people with disabilities and friends and families
of disabled people, online interaction is not without risks. Radicone said his site gets hacked about every three months, and he constantly patrols the site to weed out insincere or predatory users. Because the site is smaller, it is easier to police than a large site like Facebook, he said. “(Facebook is) almost too big of a pool of people, and you don’t know who’s out there,” Radicone said. “At least if you’re on eSpecialMatch, you kind of know who is on there already.” When users sign up for eSpecialMatch.com, they answer a questionnaire and provide an email address. If Radicone or another user notices a profile that is inactive or appears suspect, Radicone temporarily puts the profile on hold and sends the user an email. In some of Shields’ online groups, there have been individuals who take bits and pieces of other members’ stories and pretend to have a disabled child. She said these people threaten the entire group, and it is important to expel them as soon as possible. “That’s another reason to be really aware of who’s in your group,” she said. “You’ve got to have a really good group who’s willing to act when something like that happens.” Shields said she has shared information about her children’s path to diagnoses so that other parents can use it as a roadmap, but she is cautious not to share too much personal information. “Once it’s shared, you can’t take it back,” she said.
A TEACHING TOOL
simple way to keep everyone she knows in the loop about William’s health and other family news. “When there’s stuff going on, that’s just an easy way to tell people what’s going on without making a lot of phone calls,” she said. She said she shares information about mitochondrial disease on her Facebook profile, especially during Mitochondrial Disease Awareness Week in September and in the weeks leading up to the Energy for Life Walkathon, which benefits the United Mitochondrial Disease Foundation.
“If you can connect with a group of people, that’s when you can really start to facilitate change.” Hickson said her friends seem more interested in learning about mitochondrial disease from her perspective. “Unless you know somebody with mitochondrial disease, you’re probably not going to seek out the information or learn about it, unfortunately,” she said. “We don’t want people to say, ‘What is mitochondrial disease?’” Spreading awareness through all platforms is critical to finding a cure, she said. With the help of social networks, Hickson said, she imagines a brighter future for her son William and other children with mitochondrial disease — one that’s as bright as the yellow and orange logo for the mitochondrial disease walkathon in her Facebook default picture. w
While keeping in mind the risks, parents and people with disabilities are finding more tools than ever before on the Web. They educate each other, but they also educate friends and family who otherwise might not know much about certain diseases and disabilities. Hickson said Facebook is a fast, JAN2013 49
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PHOTO BY BRITTAIN MCNEEL
PHOTO BY PHOTOGRAPHER NAME HERE
PHOTO BY BRITTAIN MCNEEL
You’ve got a friend in me Though canine companions are the most conventional therapy animals, horses and other animals are helping people with disabilities lead more healthy, self-confident lifestyles. By Florence Bryan
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COMPANIONS can come in all
shapes and sizes — short or tall, narrow or wide, two-legged or four-legged, furry or feathered. For many people with disabilities, animal companions offer more than the presence of a wagging tail or friendly purr. Specially trained animals can also help individuals carry out activities in their daily lives and even offer forms of physical and psychological therapy. Organizations across the country train service and therapeutic animals to interact with people who have a wide range of physical, mental and social disabilities. According to the revised version of the Americans with Disabilities Act (ADA) passed in 2010, service animals are defined as dogs and miniature horses trained to perform tasks, such as guiding visually impaired individuals, opening doors or picking up items for people with physical disabilities. They are also used in alerting hearing-impaired individuals of important sounds and warning people with seizure disorders about an oncoming seizure. Registration is not required under the ADA, but organizations, such as the United States Service Dog Registry, provide certifications and identification for people who use dogs for disability
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assistance. This is particularly helpful for people with “invisible” disabilities, including deafness and seizure disorders, which are sometimes not apparent at first glance. With identification, disabled owners can bring their service animals with them to places that don’t normally allow pets, such as into stores and on public transportation. Beyond service dogs and miniature horses, there are also several more domesticated animals that offer other therapeutic benefits not necessarily defined by the ADA.
A POWERFUL BOND The affection, companionship and love that animals give can immensely help all people whether or not they have disabilities. Patti Shanaberg, the founder and director of Angel Paws Animal Assisted Activities and Therapy in Newark, Ohio, has seen the transformative effect of animals on people in hospitals and behavioral healthcare facilities, especially because animals are nonjudgmental. “It sounds simple, but it’s very powerful,” Shanaberg said. Shanaberg heard about animal-assisted therapy after falling on hard
times herself. She wishes she had known about it when she was dealing with health and family problems. She went through therapeutic training with her dog in California, and afterward began visiting hospitals and medical facilities where patients could interact with and pet her dog. When Shanaberg relocated to Ohio, she started Angel Paws because no one in the area was providing therapeutic activities with animals. The interactions she has witnessed between animals and people with disabilities and illnesses motivate her to continue her work with Angel Paws, Shanaberg said. The dogs sit on or beside the beds, which comforts and soothes people, often bringing them back to themselves. “Frequently people, older people, who don’t even recognize their family members, will remember the dog’s name,” she said. Shanaberg remembers one time when an upset, agitated patient at a behavioral facility was calmed by the presence of her dog, and, after the visit, he apologized to the staff and other patients for his aggression the night before. “Even a short visit can make such a huge difference,” she said. “It bleeds JAN2013 51
into all their other interactions.” Another patient at the same behavioral facility began forming coherent thoughts and sentences while interacting with Shanaberg and her therapeutic dog, which was the first time he had done so since arriving there. Shanaberg said not all dogs are fit for these kinds of interactions. As an affiliate of the Delta Society Pet Partners — a well-known registry that certifies therapeutic animals — Angel Paws stresses training for both dogs and their handlers. “This is the only activity where a dog is expected to go into an intimate zone and meet with stranger after stranger after stranger,” she said. Based on the guidelines of Pet Partners, dogs and their owners must demonstrate competency every two years, and they are each given separate scores that are taken into consideration when deciding whether they are a team fit for therapy.
BRANCHING OUT While Angel Paws frequently sticks to dogs, the organization — like others registered with Pet Partners — is discovering other animals can offer similar therapeutic benefits for people. So far Angel Paws has certified three cats and one guinea pig, all of which interact with people in hospitals and medical facilities. As of right now, Pet Partners is the only one of the top three therapeutic pet registries that includes all domestic pets. Shanaberg said therapeutic cats are becoming increasingly popular among cat lovers and people who are allergic to dogs. “There’re a lot of people who don’t want anything to do with a dog,” she said. “They would just love to see a cat if they’re a cat person.” Shanaberg said the guinea pig has turned out to be a big hit even among medical facility staff members who were skeptical at first. Angle Paws is hoping to have other animals, including miniature horses, in the future. 52 wabisabi
“It’s kind of fun to introduce people to new types of pets and see how they can bond with animals, if given the chance, that they wouldn’t have expected,” Shanaberg said. Other animals sometimes used for therapy or services include pot-bellied pigs, known for their intelligence, and capuchins, a type of monkey that can perform tasks for people with disabilities, according to a document released by the Office of Diversity and Equal Opportunity in Atlanta.
LENDING A HELPING HOOF Sometimes the animals that provide the best therapy for people with disabilities are too big for hospital and facility visits. Instead, people with various disabilities come to them to take therapy by the reins. At therapeutic riding centers across the country, individuals strengthen their bodies, minds and souls with the help of horses and their dedicated instructors. Just ask Susan Swafford. Her son, Bradley, an elementary school student with a developmental disability, was upset on his first day at the North Carolina Therapeutic Riding Center in Mebane, N.C. But after a few tears during his first couple of laps around the riding ring, Bradley fell in love with horseback riding. By the end of the lesson, he was ready to come back. “He was loving it,” Swafford said. “He just got so comfortable with it so quickly, which was just great. It made me feel like, ‘Wow, if he can do this then so many other kids can do it too.’” Karen Angotti, the founder of Rainbow Riders Therapeutic Horseback Riding Center in Monmouth, Ill., said she saw a similar reaction from an autistic boy when he first mounted a horse. “We put him on that horse and he started to scream,” she said. “His mother said, ‘Go, go,’ and we did, and the horse took about five steps and the child began to laugh.” Most riding centers offer riding lesson tailored to the needs of the
riders, including group classes and one-on-one therapeutic sessions. Even when participants are riding alongside other participants, most have instructors and volunteers leading the horse and walking beside them to meet their individual needs and ensure safety. Many participants experience physical benefits from horseback riding, such as improved coordination and strength, especially at the body’s core. One specific way to do this is through hippotherapy, which uses the movement of the horse to influence the rider. Physical therapists, occupational therapists and speech-language pathologists can all engage in some variation of hippotherapy to address different needs, according to the American Hippotherapy Association.
“[Clients] just think that they are riding the horse, whereas really they’re getting effective therapy but in such a different way.” Participants who need to build trunk strength and increase balance benefit from having to adjust with each step the horse takes. Therapists sometimes use toys, obstacle courses and exercises, such as having the rider stand in the saddle stirrups, to make therapy more enjoyable and effective. The stimulation of horseback riding also helps participants who have problems with sensory input. “The horse is the backbone of the therapeutic riding,” Angotti said. “The horse is really everything.” As Swafford and Angotti saw from their own experiences, the benefits of horseback riding also help people mentally and socially. Anita Hartzell-Hefler, the founder and director of the Greater New Orleans Therapeutic Riding Center, said she has seen one autistic boy learn how to follow multi-step instructions from
horseback riding. At school, he was only able to follow two-step instructions, but on the horse, he does five or six steps in a row, she explained. “His dad is floored by how he remembers every single task that we ask him to do,” she said. “He thinks that the horse is such a motivator for him.” Participants also develop confidence and learn responsibility when interacting with and caring for such large, powerful animals, according to the Equine Assisted Growth and Learning Association — an international nonprofit association for professionals using equine therapy. “Most of our kids are in wheelchairs or walkers, and they’re always looking up,” Hartzell-Hefler said. “When they’re on horseback, they get to look down at the rest of us, and that’s very empowering.” One of Hartzell-Hefler’s riders, who has Spina bifida and is typically limited to activities she can do from a wheelchair, has really loved learning the new skill. “This is something she can do, and actually a lot of able-bodied people can’t do this,” Hartzell-Hefler said. For many participants, the best part of all is that horseback riding doesn’t feel like therapy but rather a special extracurricular activity they can talk about with their friends and family. “Particularly for the children, they don’t see it as therapy, and a lot of our riders have a lot of therapy,” said Margie Muenzer, Bradley’s instructor and therapist at the N.C. Therapeutic Riding Center. “They come out to the farm, and they just think that they are riding the horse, whereas really they’re getting effective therapy but in such a different way.” The staff members at the riding centers notice the joy the children receive from even simple interactions with the horses. As with all animal-assisted activities and therapy, the animal is the most important part of teaching new skills and changing the lives of people with disabilities. w
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WHERE TO RIDE Hundreds of equine centers across the U.S. offer therapeutic riding to people with disabilities.
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Spirit Therapeutic Riding Center
Ellensburg, Wash. This center is dedicated to providing equine-assisted activities to people with physical, emotional and learning disabilities. The center focuses on capabilities, not disabilities, according to its mission statement.
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The Shea Center
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CO Therapeutic Riding Center
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Equest Riding Center
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Fieldstone Farm
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NC Therapeutic Riding Center
Orange County, Calif. Focusing on a range of disabilities, the Shea Center provides classes crafted specifically to address the needs of small groups. Classes focus on strength, balance and coordination.
Longmont, Colo. Providing services such as therapeutic riding and hippotherapy, this center offers more than “just a pony ride,” according to its website. The center caters to many disabilities.
Wylie, Texas This center offers therapeutic sports riding classes and hippotherapy to hundreds of clients each week. With the help of volunteers, qualified instructors teach a variety of classes.
Chagrin Falls, Ohio With more than 35 horses, this center serves clients ranging from 2 years old to senior citizens. Classes are catered toward a wide range of disabilities, from cognitive impairments to physical disabilities.
Mebane, N.C. This center seeks to empower people with disabilities to lead more active, healthy lives. Classes are held for people with both physical and cognitive challenges.
BR EA KI NG T HE
D L MO Being a working actor in Hollywood is difficult enough, but an actor with a disability may face even more of a challenge to land an agent, audition or job. By Melanie Johnson
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Actor R.J. Mitte, right, plays a teenage boy with cerebral palsy on the hit AMC TV series Breaking Bad. Mitte, who has a less severe case of cerebral palsy than his character, has risen to the challenge of finding work as a disabled actor in Hollywood.He is pictured here with co-star Bryan Cranston, left, at the 2012 Emmy Awards.
PHOTO BY JAY L. CLENDENIN
R.J. MITTE, who plays Walter White
Jr. on the hit AMC TV series Breaking Bad, has more in common with his character than viewers may know. Mitte, like the character he plays, has cerebral palsy. Cerebral palsy is a group of permanent, nonprogressive disorders associated with developmental brain injuries that can, to varying degrees, inhibit the body’s motor functions. While his character has a more acute form of cerebral palsy than he
does, Mitte plays his role with an authenticity and believability that can come only from personal experience. “My character’s cerebral palsy is more severe than mine is now,” he said. “But I’ve been there. I’ve had the crutches, the braces, the chair. I’ve been through it.” Mitte’s personal manager, Addison Witt, who has been working with Mitte for the past seven years, said he recognized that Mitte was perfect for the part as soon as he saw the casting notice. “We received the breakdown of the
character, and when I saw it, I said, ‘Bingo, this is it,’” Witt said. Mitte, then 13, had been acting in Los Angeles for only a few months when Witt suggested he audition for Breaking Bad. Mitte moved to Los Angeles with his mother and sister to launch his sister’s acting career. He said he enrolled in Witt’s acting classes mostly as a way of meeting people his own age. “I got started in acting as a fluke,” Mitte said. Witt said Mitte had a natural abilJAN2013 55
Sometimes an actor with a disability, namely Breaking Bad’s R.J. Mitte, may find the perfect role early on, but for many, it’s a struggle to make it in an industry where disability is still stigmatized and inaccurately portrayed.
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R.J. Mitte participating in the Breaking Bad panel at Comic-Con International 2012.
breaking something.” Mitte said his experience on Breaking Bad has helped him to recognize how far he has come, both with his disability and in the entertainment industry.
“My character’s cerebral palsy is more severe than mine is now. But I’ve been there. I’ve had the crutches, the braces, the chair. I’ve been through it.” “Every day I wonder, ‘How did I get in this position?’” Mitte said. “And honestly, I don’t know how it happened. I feel so lucky. I love this job. To me, this is the best job in the world.” Witt said Mitte has used his success to help others by becoming an advo-
cate for performers with disabilities. Mitte was the spokesperson for Alliance for Inclusion in the Arts’ I AM PWD (Inclusion in the Arts and Media of People with Disabilities) Campaign, which sought to promote the advancement and employment of performers with disabilities through access, inclusion and accuracy. “There’s still a lot of prejudice against people with disabilities in the industry,” Mitte said. “But I feel that we are making steps. We’ve just got to keep talking about these issues, increasing awareness and living our lives.”
SPEAKING UP FOR ACTORS WITH DISABILITIES Gail Williamson is a disability rights advocate, who believes, as Mitte does, that change is happening within the entertainment industry. Williamson
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ity for acting. Mitte was a fast learner who kept a positive attitude even after going on auditions and not getting cast, he said. Witt knew it was only a matter of time before the right role for Mitte came along. “I remember saying to R.J., ‘There is one role for you that will be undeniable,’” Witt said. That role turned out to be Walter White Jr. on Breaking Bad. Sure enough, Mitte auditioned for and landed the part of White Jr., but it wasn’t without proving his acting chops first, Witt said. Witt said Mitte had to audition five times for the part of White Jr. In his final audition, Mitte flew out to New Mexico to read for the show’s creator, Vince Gilligan. He got the part after that reading. Witt believes Gilligan was initially skeptical of casting Mitte because Mitte seemed “too normal” for the role. According to Witt, it’s this normalcy that Mitte brings to his character that distinguishes Mitte’s portrayal from so many other TV portrayals of people with disabilities. “This portrayal is more true to life,” Witt said. “He’s not playing up the cerebral palsy — that was an adamant decision on R.J.’s part. R.J. wanted to show that a person could have a disability and be as normal as anyone else.” Still, because Mitte’s cerebral palsy is not as severe as his character’s, Mitte had to train for the role. Mitte said he had to “regress” to a more difficult state of cerebral palsy to play White Jr. “I had to try remembering everything that I went through as a kid when my cerebral palsy was more severe,” he said. “I went back in my memory to a time when I had to use crutches. I was super skinny, and I had to wear casts because I was always
is the director of Down syndrome in Arts & Media, a casting liaison service for people with Down syndrome and other developmental disabilities. Williamson became an advocate for actors with disabilities after her son, actor Blair Williamson, entered the entertainment industry at age 10. Williamson said finding representation for her son, who has Down syndrome, was extremely difficult when she first started looking in 1990. “I started looking for agents, but they were all turning me down,” Williamson said. “They said, ‘There’s no work for people with Down syndrome.’”
“He’s not playing up the cerebral palsy — that was an adamant decision on R.J.’s part. R.J. wanted to show that a person could have a disability and be as normal as anyone else.” Williamson said it was Blair’s headshot photographer who ultimately saw Blair’s potential and found him his first talent agent. Blair has been acting consistently in TV and film roles ever since. “He’s 33 now, and he’s been in a lot of shows,” Williamson said. “He’s been a guest star on ER, he’s been killed on CSI (Crime Scene Investigation), he’s had a nose job on Nip/ Tuck. He has quite a lot of credits on his IMDb page.” But Blair’s career has slowed in recent years, which Williamson attributes to Blair’s getting older and increased competition for roles. With more actors with disabilities in the business, and with a limited number of roles for these actors to play, Williamson said it’s often difficult for actors with disabilities to find work. A 2011 study of overall diversity on broadcast networks conducted by GLAAD (the Gay and Lesbian Alliance Against Defamation) revealed that only five series regular characters were people with disabilities. This makes
them just 0.08 percent of all regular characters on network TV. David Harrell, a disability and programming associate at Alliance for Inclusion in the Arts, said this percentage accurately reflects how challenging it can be for actors with disabilities to find work in a highly competitive industry. “If you look at employment statistics for actors with disabilities, you’ll find that the numbers are incredibly small,” he said. “It’s difficult because there aren’t really a lot of acting jobs, in general. It’s already very difficult to be an actor — with or without a disability.” Yet, while network TV has fallen short in including diverse characters, cable TV is showing signs of progress. HBO’s Game of Thrones, AMC’s Breaking Bad, ABC’s The Secret Life of the American Teenager and Switched at Birth all feature characters with disabilities who are played by actors with disabilities. Williamson said this increase in roles on cable programming might be the result of directors becoming more open to working with actors with disabilities. She said it might also be that society is becoming more accepting of people with disabilities. Harrell agreed. “As we become more aware and more inclusive as a culture, I think the film and TV industry will come along with us,” Harrell said. “As we become more aware of difference, changes in the industry can be made more comfortably. As our knowledge of a larger world opens up, our storytelling opens up.”
LOOKING AHEAD One way that Harrell and others at Alliance for Inclusion in the Arts help to spur discussion on disability is by partnering with other disability rights advocates and groups. In October 2012, Alliance for Inclusion in the Arts collaborated with Turner Classic Movies (TCM) and disability rights activist and media spokesperson Lawrence Carter-Long to
ALL ABOUT CEREBRAL PALSY Cerebral palsy is a group of disorders that affect brain and nervous system functions, such as movement, seeing and hearing. It’s caused by injuries or abnormalities of the brain that occur within first two years of life. There are many types of cerebral palsy. Some symptoms include tremors, unsteady gait and loss of coordination.
produce a special one-month exploration of disability in film. TCM’s “The Projected Image: A History of Disability in Film” featured 20 films ranging from the 1920s to the 1980s. The films explored a variety of aspects, themes and types of disability, including blindness, deafness and intellectual or psychiatric disabilities. Harrell said the film study, which aired every Tuesday night in October, explored past preconceived notions of disability and looked at society’s progress in how we think about and portray disability through film. “It’s a way of looking back and seeing what attitudes on disability were like more than 20 years ago,” Harrell said. “It’s about recognizing that we’ve really changed as a culture and that films have changed to reflect that.” Lawrence Carter-Long, who curated “The Projected Image” and is an actor with cystic fibrosis, said the series helped JAN2013 57
R.J. Mitte, right, with his personal manager, Addison Witt. Mitte began taking Witt’s acting classes as a way to make friends, but with Witt’s help he soon found the perfect role.
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“There’s obvious trends that have happened throughout our cultural history and in cinema,” Carter-Long said. “People with disabilities have been seen as monsters and outcasts, like in “Hunchback of Notre Dame” or “Phantom of the Opera.” They’ve also been painted as heroes because of returning veterans. They’ve been portrayed as victims, where everything’s a tragedy and a burden.” Carter-Long said it’s tiresome to be cast in these clichéd, one-dimensional roles. “You get stuck in these two extremes of superhero or pathetic,” Carter-Long said. “Or you have to be the ‘inspiring’ character. And doggone it, it’s exhausting to be inspiring all the time!” Williamson said having accurate, three-dimensional portrayals on TV and in film will help audiences begin to see people with disabilities as regular people and give children with disabilities an opportunity to see on-screen characters whom they can relate to. “And why shouldn’t a kid be able to turn on the television and see some-
one who looks like them?” Williamson said. “We need to show children with disabilities that there are people who look like them out there, so that they realize that they’re not alone.”
COMPETING WITH ACTORS OF ALL ABILITIES Yet even when a TV show or film features a character with a disability, there’s no guarantee that the character will be played by an actor who has a disability. “It’s accepted that you at least make it available to the people with disabilities first,” Williamson said. “But there’s nothing that says the actor with the disability will be cast just because they have a disability.” Carter-Long said casting nondisabled actors is problematic because disabled actors already have limited roles available to them in the first place. “Every time a nondisabled actor plays a disabled character, they are taking a role away from a disabled actor,” Carter-Long said. “Fortunately, the
PHOTO COURTESY OF ADDISON WITT
audiences study inaccurate past portrayals of disability in order to encourage healthy, realistic portrayals in the future. “What we’re doing is looking back to pay it forward,” Carter-Long said. “We have to understand where we’ve been to chart a new direction — to chart a course for where we need to go.” Carter-Long said he became involved in “The Projected Image” project after an associate at Alliance for Inclusion in the Arts reached out to him about pitching the idea to Turner Classic Movies. Since 2006, TCM has dedicated one month toward examining how different cultural and ethnic groups have been portrayed in cinema. But up until 2012, they had never addressed disability. TCM responded enthusiastically when Carter-Long and Alliance for Inclusion in the Arts pitched their idea to explore disability in film. Carter-Long said the goal of the film series was to deconstruct the many stereotypes on disability that have persisted in the film industry for decades.
ACTORS WITH DISABILITIES Sean Berdy, 19 Berdy is a deaf American film actor, comedian and live performer. Berdy appeared in the film “The Sandlot 2” and currently stars as one of the two main characters on the show Switched at Birth.
entertainment industry can’t really get away with this any more.” Carter-Long said the TV and film industries are now making a greater effort to give actors with disabilities priority in playing characters with disabilities, in part, he believes, because of the negative attention some shows have received from casting nondisabled actors in those roles. “No show wants to be tagged with negative press,” Carter-Long said. “And they’re starting to realize that casting an actor with a disability is a benefit, not a hindrance.” Adam Moore, equal employment and opportunity director at SAG-AFTRA, the nation’s largest labor union for screen actors, agreed that audience response has a lot to do with changes in the industry for performers with disabilities. “Audiences are deciding that there are certain things that aren’t acceptable anymore,” Moore said. “Just like when we said, ‘We’re not going to accept blackface or the stereotyping of
Erick Kaffka, 42 Kaffka is a Canadian actor, model and stunt double. In 1999, Kaffka was involved in an accident that left him a double leg amputee. In 2001 he appeared as the stunt double for Orlando Jones in “Say It Isn’t So.” One of his most recent performances was as a soldier wounded in Iraq on an episode of Untold Stories of the ER.
Teal Sherer, 31 Sherer is an American actress and producer. She was involved in a car accident at age 14, which left her paraplegic. Sherer is best known for her role as Venom on the web series The Guild and is the creator and star of My Gimpy Life.
Latinos,’ it also goes for disability. Audiences don’t buy into those inaccuracies as much anymore.” Witt said an actor with a disability shouldn’t be hired solely because he or she has a disability, but because he or she is the best fit for the part.
AN OPTIMISTIC FUTURE
“Every time a nondisabled actor plays a disabled character, they are taking a role away from a disabled actor. Fortunately, the entertainment industry can’t really get away with this anymore.” “The acting roles should go to the most skilled actor, who conveys the truth of the character better than anyone else,” he said. “There needs to be more ways to enhance opportunities for people with disabilities to audition, but, just like any other actor: They have to prove themselves.”
Williamson believes people’s perceptions of disability are changing. She said she will continue her advocacy services because, even though opportunities for actors with disabilities are expanding, change isn’t coming quickly enough. But Moore said that although they still have a long way to go, the film and TV industries are moving in the right direction. “Clearly we have to take advantage of this positive trend and work toward making disability less scary to people,” he said. “The goal is to eliminate fear through education, through humor and through successful ventures.” Despite past setbacks, Lawrence Carter-Long, too, is optimistic. He said it’s up to those who care about disability rights to take collective action and let their voices be heard. We’ll have to use every tool in the tool kit, so that people see the changes we need to make,” Carter-Long said. “But we’re right on the cusp of a brave new world.” w JAN2013 59
LOVE, Enabled.
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How to come to terms with disability, love who you are and let people in.
Nick Vujicic, who was born
with tetra-amelia syndrome, a rare disorder characterized by the absence of all four limbs, never thought he would find love. “As someone who is two arms and two legs short of the standard-issue Prince Charming, I often despaired that
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I would never find someone to share my dream of having a family,” Vujicic wrote in his book “Unstoppable,” which was released in October 2012. But Vujicic, despite his deepest fears, did find love. Vujicic met the love of his life, the beautiful Kanae Miyahara, in April 2010. Vujicic, a Serbian Australian
evangelist and motivational speaker, was asked to speak at an event in McKinney, Texas, a suburb of Dallas. Miyahara went to hear Vujicic speak with her older sister and a mutual friend of Vujicic’s. The rest, according to Vujicic, was destiny. Seeing Miyahara standing in the audience while he was delivering
his speech (and trying not to flub his words!) was, as cheesy as it might sound, love at first sight. “You may think this love at first sight story is a cliché,” Vujicic wrote. “But if this is what being a cliché feels like, believe me, mate, I’m OK with it.”
“Everyone has doubts and insecurities. But despite your deepest fears, you too can find love. You’ve just got to be open to it.” After the speech, Vujicic and Miyahara were introduced and hit it off right away. Vujicic was instantly smitten with Miyahara, whom he described as having “the most beautiful, wise and warm eyes” he’d ever seen. Vujicic and Miyahara remained in touch after the event and soon started dating. Vujicic proposed to Miyahara in July 2011, and the couple was married in February 2012. Vujicic believes his and Miyahara’s whirlwind romance is built to last. He said he has found “the woman of [his] dreams,” and he doesn’t plan on letting her go. But Vujicic was not always so lucky in love. Growing up with what many would describe as a severely debilitating disability,Vujicic was bullied and, at one point, even contemplated suicide. At 17, Vujicic turned his life around and established the Life Without Limbs organization. Life Without
Nick Vujicic’s Four Basic Tenets on Finding and Keeping Love: 1. If you come from love, there is no need to look for it. Put yourself out there by opening your heart to others. Listen to what they say and also to what they feel. Prepare to give your love as a caring, honest and trustworthy person, and you will surely receive it in equal doses. 2. If you treat others with respect and kindness, if you try to do the right things and to make the most of your gifts, you will be worthy of love.
Limbs is a nonprofit with a mission to encourage disabled and nondisabled people alike to live lives of purpose. Vujicic, the president and CEO of Life Without Limbs, travels extensively to countries across the globe, preaching his faith and talking about the extraordinary power of love. Vujicic believes that everyone is worthy of love, but that an individual must practice self-love before he or she can truly be open to loving someone else. He said that love is meant for everyone – people with
3. To be loved by others, you must first love yourself. If you find it difficult to love yourself, then you have work to do before you can expect anyone else to sign on to a relationship with you. 4. You cannot give up on love. You may try to bury your feelings, and you may harden your heart as a protective measure, but you were created out of love and it is part of your life force. So stay in faith and remain open to one of God’s greatest gifts.
disabilities are no exception. We all have imperfections, but the key is to find someone who will love and cherish these imperfections and love us for every “limitation,” “weakness” or “flaw.” “Everyone has doubts and insecurities,” Vujicic said. “But despite your deepest fears, you too can find love. You’ve just got to be open to it.” “I found the perfect woman for the imperfect me,” Vujicic wrote. “We know we each have our flaws, but we see ourselves as perfectly matched.” JAN2013 61
Each month, wabi sabi features an inseparable pair that defies the challenges of disability. By Faith McElroy
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PHOTO BY FAITH MCELROY
The Strength of Sisterhood
son proudly waves a spiral notebook in the air. “I drew Reshiram,” she explains with a grin. On the page in front of her is a black-and-white sketch of the draconian Pokémon. For Coco, formally called Kristen, life’s greatest pleasure is allowing her imagination to take over. “Sometimes I’m a cheetah, a pretty princess, a spaceman, a butterfly or a royal chess player,” she says. The aspiring artist likes capturing her flares of creativity on paper — her favorite subjects being horses, dresses and, of course, Pokémon. But her ocular albinism makes this endeavor a little complicated. Ocular albinism is a genetic condition that reduces coloring, or pigmentation, of the iris and the retina, which is essential for normal vision. The condition is characterized by a loss of visual sharpness and problems with depth perception. “Sometimes I have to look real close to see the paper lines,” she says. Coco says her condition occasionally makes her feel a little less-than-special, but she is quick to acknowledge the silver lining. “The best part about it is getting extra help when you need it, “she says. “I have this thing at school where I talk to an exceptional children teacher. She helped me make my computer screen larger, which makes it easier to do things.” “I also get extra shade!” Ocular albinism can cause increased light sensitivity. “I love the shade,” Coco says. But these little accommodations for making life with ocular albinism easier don’t compare to Coco’s greatest asset — the company of her sister. Cassie, Coco’s 12-year-old sister, has muscular dystrophy. MD is a genetic disorder in which a person’s muscles deteriorate over time. As Cassie puts it, if you’re affected
by MD, “You can’t do as much as other people can, like pushups, running or playing basketball.” Cassie admits that she sometimes gets disappointed about the setbacks of the muscular disorder. “I get frustrated because I can’t get off the floor easily, and I can’t do things my friends can do. I want to play softball or be a cheerleader, but I can’t because of muscular dystrophy.”
“You always have to have someone to play with. We always have to get along.” Fortunately MD doesn’t stop Cassie from doing what she enjoys most: reading. For most people, reading provides an escape into a fantasy world full of knights, secret agents or Southern belles. For Cassie, reading is a way to push through the limitations of her body set forth by reality. “When I read, I can visualize what’s happening, and it lets me experience things I can’t in real life,” she says. Last year, Cassie attended the Muscular Dystrophy Association summer camp. At camp, she was able to meet other children with MD and participate in physical challenges made available especially for her. “There are kids like me from all over North Carolina,” she says. “We swim and do ropes courses. I’m happy to know I’m not the only one like this.” When she’s not in camp, to find companionship, all she has to do is take a peek into the stuffed-animal-haven of a bedroom across the hall: her sister’s room. Together Cassie and Coco cheer each other up when one is feeling down and provide mutual entertainment around the clock. “We are each other’s companion to help each other out with the disabilities,” Coco says. “You always have to
have someone to play with. We always have to get along. She fixes my cereal.” “I’d be a loner without her,” agrees Cassie. Both girls take solace in their Christian religion. They are active in their church in their hometown of Marion, N.C. They gain comfort by reading the Bible and knowing that someone is looking out for them from above. But they make sure to look out for each other down below as well. The sisters say they stand up for each other in times of need — like getting in trouble for harboring candy on a school bus. “This evening when I was getting off the bus, this girl said she was going to tell on me for opening up a box of Dots, so Cassie said she’d tell on her.” When asked if she was guilty as charged, Coco confesses, “I did open the box. They were tasty.” It’s hard to squeeze in a serious moment with the Ferguson sisters. Cassie and Coco are constantly meeting up to play in a world created from their imagination, a place where the official language appears to be laughter. “If I didn’t have her, I’d be so lonely. She makes me laugh,” Coco says. “We like to goof off a lot.What can I say, she’s like a sister to me — that’s the best part.”
Coco’s creativity and enthusiasm are evident in her drawings.
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Dynamic Duos
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TEN-YEAR-OLD COCO Fergu-
PHOTO BY PHOTOGRAPHER NAME HERE
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Four Little Words One brave young woman does her best to overcome challenges in her quest to become a dancer.
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“FIVE, SIX, SEVEN, EIGHT.”
Lauren Fayerman is not your idea of a typical professional dancer, but throughout her years of dance training, she’s heard these words many times. Although Fayerman, who has Down syndrome, might face different challenges than other dancers, her passion for the craft is no less than her fellow dancers. Ever since childhood, Fayerman, now 24, knew she wanted to be on stage, and she has not let anything hold her back. “I’ve been dancing my entire life. It’s awesome,” Fayerman said. She has spent more than 20 years learning various dance styles at studios in her hometown of Palm Beach, Fla. Rather than abandon her love for dance after graduating from high school, she decided to turn her passion into her profession and auditioned for the dance department at Palm Beach Atlantic University in Florida. Like any aspiring professional dancer, she was shocked but excited to be accepted to the program. On her first day of dance class at Palm Beach Atlantic University, Fayerman knew she was different from every dancer in the classroom. There are not many dancers who have Down syndrome and are pursuing a career as a professional dancer. But even though she was the only student in the dance program with Down syndrome, Fayerman and her classmates found that they had more similarities
By Carissa Davis
than differences. Their love for dance brought them together in various ways.
CRAFTING A SKILL Fayerman said having Down syndrome never deterred her from her dreams of becoming a professional dancer. She wanted to be trained by professionals from all over the world and perform on some of the world’s greatest stages. Before applying and auditioning for the dance program at Palm Beach Atlantic University, Fayerman knew she would need to take her dancing to another level. She joined the well-known Demetrius Klein Dance Company of Lake Worth, Fla. Demetrius Klein is an international performer and choreographer with a strong resume of choreographed, performed and produced pieces. The company’s dancers have international training and performance experience. Klein has worked with various university dance programs in Florida, including Palm Beach Atlantic and Florida State, and many of the company’s dancers have studied at Palm Beach Atlantic University either before or after joining Klein’s company. Interacting and dancing with the professionals of the company inspired Fayerman to continue chasing her passion. She took classes in modern dance and ballet and danced with both the adult and high-school level companies to gain more experience.
Fayerman perfected her skills as a dancer and gained the confidence to audition for Palm Beach Atlantic University’s dance program. “I owe my acceptance to the dance program at PBA to Demetrius Klein Dance Company,” Fayerman said.
COMMON CAMPUS BOND Palm Beach Atlantic University is a comprehensive interdenominational Christian university. It is a small campus with only 3,663 students, making it easier to form a tightly knit friend group. Fayerman did just that by forming bonds with not only dance major students but also students with other majors. “I can say I feel like I know half the people on this campus now,” Fayerman said. Students at Palm Beach Atlantic build relationships through campus-based activities like required community service and campus chapel attendance. Many of the students who choose to attend Palm Beach Atlantic base their decision on the Christian focus of the university. Adrienne Ming, a junior in the school’s dance program, said she was looking for a university that stressed Christian values and also had a strong dance program. She found Palm Beach Atlantic to be the perfect fit, since it is one of only three schools in the Council for Christian Colleges and Universities that offers a dance major. JAN2013 65
Students in the dance program often choreograph and perform dances with their Christian faith in mind. That is exactly what Fayerman wanted to do upon arriving at Palm Beach Atlantic.
COMPETITIVE ENVIRONMENT Fayerman said fellow dancers were not always nice to her. She believed the competitive nature made it harder for dancers in the program to become friends with one another. At times, it created a tense environment that made it difficult for dancers to enjoy class. Ming said sometimes some fellow dancers in the program wouldn’t even reply to a friendly “Hello.” To Fayerman, it seemed that some dancers had forgotten the bond they made through dance and faith. Ming said she felt that some dancers walked into the classroom with their noses too high in the air. “Some girls walk in thinking that they’re so much better than the rest of
us,” Ming said. “They’ll just ignore you like you’re not even a good enough dancer to be spoken to.” Fayerman dedicated herself to proving she can compete with the best of the best in the dance program. Despite her encounters with unfriendly classmates and stiff competition, she knew her love for dance was too important to ever walk away from.
“I just pushed through it. Nothing was going to stop me.” “It started off tough with some of the really competitive and unfriendly dancers, but now we have a really great group of people,” Fayerman said.
TOUGHING IT OUT
People who have Down syndrome learn at a slower rate than their peers. At times, Fayerman said she would forget parts of the choreography right after it was taught to her. “Sometimes I forget what I’m doing and have to ask if we could go back a few steps,” Fayerman said. “I didn’t want to slow class down or anything though.” Memorizing choreography proved even more difficult for Fayerman when she was stressed about classes and exams. Stress and anxiety can add to the difficulties a person with Down syndrome Fayerman exhibits her dance skills during a break between experiences. classes. Though busy with rehearsals, Fayerman always finds “Sometimes it times to relax and enjoy dance. got tough, but I just 66 wabisabi
pushed through it,” Fayerman said. “Nothing was going to stop me.”
THINKING AHEAD Although she experienced some difficulties in her first two years at Palm Beach Atlantic, Fayerman had many experiences to celebrate as well. She joined the dance department’s audition-only ensemble company, attended various dance festivals and intensives and decided to pursue a dual degree in teaching and performance within the dance department. She wanted to secure her chances of finding a job after graduating from college if it became difficult to find performance opportunities. “If performing is not possible after graduation, I’ll still be able to be a dance teacher,” Fayerman said. Fayerman said that after college, she plans to teach at a local dance studio in the West Palm Beach area until she and her best friend, a Palm Beach Atlantic dance program alumna, can start their own dance studio and company. The two friends met before college while dancing together and have been planning to open their own studio ever since. Fayerman wants to teach and choreograph for all age levels and eventually have her own dance company.
TAKING CENTER STAGE IN MORE WAYS THAN ONE As a senior, Fayerman was required by Palm Beach Atlantic’s dance department to produce her own multiple-piece performance that would serve as her final project toward graduation. The performance was Fayerman’s chance to combine everything she learned in her years at Palm Beach Atlantic and produce a show for her family, the community, students, professors and the head of the school’s dance department. The final project would also determine whether Fayerman would graduate at the end of the fall 2012 semester.
Fayerman was responsible for selecting and editing her music, choosing the show’s lighting, developing the theme of the show and selecting the dancers she wanted in her production. The final project was a sequence of pieces choreographed by Fayerman alone, and totaled one hour and 15 minutes in length.
“At times it was tough...but it always works out” As part of the project, Fayerman was also required to perform in the production. Despite all of her responsibilities, Fayerman was excited about putting all of her ideas into the production. Fayerman had been planning her senior project for nearly a year. She began contacting the 12 dancers, who had to be Palm Beach Atlantic University dance majors, during the spring 2012 semester and started teaching her choreography soon after. “At times it was tough because I had to schedule times that work for all of the dancers, but it always works out.” Fayerman said.
CELEBRATING DIFFERENCES Fayerman said her overall goal in her final project was to emphasize her uniqueness. Fully aware that she is a distinctive member of the dance program at Palm Beach Atlantic, Fayerman wanted to celebrate her pride in being different. “Everything’s different from what people have seen before,” she said. “I’m an original and unique person, so everything needed to be original.” Fayerman’s dedication to standing out was evident in her costume planning. “I’ll go to stores and make every costume piece by piece, really specific,” she said. “I wanted everything to be brightly colored.” Bright colors not only fit with Fay-
erman’s “one of a kind” costumes, but also with the title and theme of her production, “The Light.” Fayerman said “The Light” refers to her Christian faith. “When I was younger and I was getting baptized, I remember thinking that Jesus is my light,” Fayerman said. “That has stayed with me my whole life.” Fayerman said other Bible verses mentioning light also played a significant role in her life, her dancing and the development of her show’s theme. Fayerman wanted to make sure that her theme and her production are a full representation of her faith and appreciation of her uniqueness. Fayerman said the support of her family has played an important role in her life. She was excited to show her family all of the hard work that she has put into her dance career and final project.
THE HOME STRETCH As the Dec. 7, 2012, performance date approached, Fayerman’s rehearsals began to intensify and lengthen because they were critical to the success of the show. In the weeks leading up to Fayerman’s final project, rehearsals consisted of full run-throughs, dress rehearsals and technical rehearsals. Just days before the show, rehearsals were held for about six to seven grueling hours but the dancers were ready to perform. “We rehearse a lot, but I know how important this show is for all of us,” said Ming, who is one of the dancers in Fayerman’s final project. One cannot even imagine counting how many times you might hear the words “five, six, seven, eight” during a seven hour rehearsal, but it is evident Fayerman will never grow tired of those four little words, especially now that she is the one saying them. Her final project is the first of what Fayerman hopes will be many successful productions made entirely by her. “I’m really proud of my show, ” Fayerman said.
5 STUDIOS THAT OFFER INCLUSIVE DANCE EXPERIENCES AXIS DANCE COMPANY
AXIS offers a variety of dance classes to people with and without disabilities of all ages. Oakland, Calif.
DANCING WHEELS DANCE COMPANY
The first modern dance company to integrate professional stand-up and sit down wheelchair dancers. Cleveland, Ohio
CENTER FOR MODERN DANCE EDUCATION
CMDE’s goal is to instill confidence and self-acceptance of every student regardless of their background. Hackensack, N.J.
INFINITY DANCE CENTER Created to expand the boundaries of dance, Infinity Dance Center features dancers with and without disabilities. New York, N.Y.
INTERNATIONAL CENTER ON DEAFNESS AND THE ARTS
Provides education, training and the opportunity for people who are deaf or hard of hearing to express themselves artistically. Northbrook, Ill.
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Timing is everything Standardized tests are stressful, no doubt about that. In an effort to take some of this stress away, testing companies are allowing special accommodations for students with learning disabilities. Here’s a closer look at how extended time on exams can help students with ADHD and ADD. By Margaret Croom
PHOTO BY KATY DENNING
“TIME IS UP.
“Please put your pencils down and close your test books.” All students are familiar with these words. They come at the end of every standardized test students take for college admission. These words inspire relief and fear at the same time. Relief that a test is finally over. Time to celebrate and worry later about your actual scores.
Fear because you haven’t finished a section on the test in the allotted time. You’re worried that it will affect your grade, but there’s nothing you can do about it. For students diagnosed with attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD), that is no longer the case. Students with these conditions have trouble concentrating for long
periods of time and are, in the case of ADHD, very active, which can interfere with test-taking since they have to be still and attentive for the entire test. These students can request special accommodations on standardized tests such as the SAT and the ACT as long as they provide documentation of their condition. Breaks during testing for students with attention problems, a JAN2013 69
smaller testing group to alleviate stress and more time on test sections, particularly reading sections, are all accommodations available for students. Requests are reviewed and either accepted or rejected by the officials of each testing organization. And yes, there are many cases in which requests for extended time on exams are rejected. Fortunately for Morgan McNeel, she was not one of those cases. McNeel, a sophomore studio art major at Rice University in Houston, Texas, with ADD, received a 50 percent time extension on the ACT that allowed her to work on all parts of the ACT at her own pace with breaks when she needed them. “These accommodations have helped me tremendously,” McNeel said in an email. “If I didn’t have extended time, I would not have enough time to finish the test. I would feel pressured by the time crunch and would consequently do worse on the problems I actually had time for.” According to an article in The New York Times, the ACT approves about 92 percent of applicants for test accommodations, and the SAT approves about 85 percent. Most of the requests are for extended time on tests. “For the ACT, the accommodations aim to create a stress-free testing environment, and that is certainly what it felt like,” McNeel said. “I was in my own room, could choose to move on to other sections when I pleased, and could take breaks whenever I wanted. “For most other standardized tests, the testing is less relaxed. I was usually in a room with other people that had the same accommodations, and there would be a proctor in the room at all times.” In recent years, the companies behind the tests have cracked down on the accommodation request process. It can take several tries for a testing organization to approve a student’s request, and there are many cases in which one
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organization will approve the request, while others won’t. This might be because of reports that students are faking ADHD and ADD symptoms in order to reap the benefits. In fraud cases, those benefits include medications that treat the symptoms of ADD and ADHD as well as accommodations during exams. “ADHD is a real diagnosis that many people suffer from,” said Cyndi Sarnoff-Ross, a licensed psychotherapist. “Unfortunately it has caught on as something that could help people who don’t have the condition.”
“I would feel pressured by the time crunch and would consequently do worse on the problems I actually had time for.” McNeel said she had to go through extensive testing to receive extended time on exams when she switched to public schools in the ninth grade. Those tests were sufficient documentation to receive extended time on standardized tests. “To be honest, my mom filled out the necessary documents and turned in the required documentation [to apply for more time on standardized tests].” Access to the Internet and various medical sites provides students with the necessary information to fake these medical conditions at the doctor’s office. This allows them to get medications and also starts the documentation of their “condition,” which testing companies rely on to judge whether special accommodations are necessary. The pressure to perform well on standardized tests is the likely culprit behind the fraud. “The medication will actually help most people to focus, but that doesn’t mean that everybody should take it,” Sarnoff-Ross said.
SAT AND ACT EXTENDED TIME REQUIREMENTS: Current documentation (no more than three years old) of a specific impairment from a professional with recommendations for accommodations Documentation that describes the history of the student’s condition (evidence of early diagnosis of the impairment) Proof that a student requires extended time on the test because of his/her impairment (a comparison between the scores on timed and untimed tests is normally accepted as evidence in this category) For more information, see www.actstudent.org or www.professionals. collegeboard.com But for students who actually need more time on exams, this deception is an abuse of their rights for the personal gain of others. “I see people faking symptoms and taking unfair advantage of ADD and ADHD accommodations as cheating,” McNeel said. “It is frustrating and unfair, especially to those of us who actually need the accommodations in order to perform at our full potential.”
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Thanks to this organization, those with disabilities can empower themselves using their own creativity. By Brandon Wiggins
W
When Cate Lazen believed
that her daughter was going to be born with a disability, she wanted a way to ensure that her daughter could lead a fulfilling lifestyle rich with creativity. That desire inspired her to found the organization Arts Unbound. Founded in 2000, today Arts Unbound is an organization whose mission is to provide arts education and skill-building opportunities to youth and adults with mental, developmental and physical disabilities. Arts Unbound works to provide the promise of a creative lifestyle to all people with disabilities. “We use art as a way of expression and advocating for those with disabilities,” said Louis Copeland, the current executive director at Arts Unbound. 72 wabisabi
According to Copeland, the artists served by the organization generally fall into two categories: artists who are well trained and just need a way to get their work publicized, and those who have raw talent but need to be taught the skills to master their craft.
“We use art as a way of expression and advocating for those with disabilities.” For advanced artists, the main benefit of Arts Unbound is that it hosts art shows and galleries. These arts
shows provide the organization’s artists a chance to showcase their work to an audience of potential customers. One of the organization’s most famous artists is Amy Charmatz. Charmatz, a painter, is well known nationally in the arts community, and her artwork has been featured in exhibitions at the Smithsonian Institution and the Kennedy Center. Charmatz, who struggled with clinical depression and underwent brain surgery, is forthright about how she uses her art as an outlet for capturing some of her experiences in dealing with disabilities. Recently, Arts Unbound held an art show for Charmatz, which she titled “Pursuit of Happiness.” Most of her paintings at this show were sold, for an average of $425.
Arts Unbound is in the Valley Arts District of Orange, N.J., an area that is known for being a hub of artistic activity. The District even has a local theater where artists from Arts Unbound have done set design work. Although many of the artists affiliated with the organization are from the New Jersey area, the organization makes an effort to reach out to artists from across the country. In fact, once a year the organization hosts a National Juried Show. For this show, they fly in artists from around the country to give them an opportunity to present their work. Arts Unbound also offers classes
for aspiring artists with disabilities. Prospective artists can take group classes or private lessons at whatever location is convenient for them. These classes are geared toward whatever artistic medium the young artist wishes to study. The organization teaches a wide array of artistic media to its students, ranging from crafts and painting to mosaics and sculpting. For the younger artists who might not be sure what kind of art they want to do just yet, the organization will let them get a taste for all of the media and let them decide for themselves what they like best. Another benefit of these courses is they provide an opportunity for Arts Unbound to hire artists with disabilities to work as teachers’ assistants. Such jobs can be the first step toward a desired career and can offer a much more fulfilling career path than many jobs generally available to those with disabilities. These teacher’s assistants can pursue their passion for the arts in a way that allows them to interact and “Thistle” by Nicolena Nina is an exploration in color and light.
Mary Drylewicz took on painting while recovering from a severe stroke. Her painting “Billie Holiday” is a symbol of her determination to overcome challenges.
ultimately benefit others. As things turned out, Lazen’s daughter does not have a disability. But the organization Lazen started has made a difference in the lives of many people who do. All told, Arts Unbound has helped a number of individuals, such as Jon Gabry, who was born deaf and legally blind, but has just enough sight to work on portraits. He finds the bright colors he uses relaxing. Or Dashir Johnson, a young man on the autism spectrum who has begun working as a muralist in a new program in which Arts Unbound artists can paint murals for schools. Ultimately, no matter who you are or what your disability is, if you have a passion for the arts, then Arts Unbound will be able to help you. “I don’t believe you can be an organization that talks about inclusion if you don’t serve everyone,” says Copeland. JAN2013 73
Tips for talking about disabilities and people with respect “People with disabilities” is preferred. “Disabled” is not preferred. “Autism spectrum disorder” is preferred, but “autism” is also accepted. Do not use “autistic” to describe someone. “Little person” is preferred. “Dwarf” is used only in certain circumstances. “Physically challenged” is not preferred. “Handicapped” is not preferred “Wheelchair bound or confined” is not acceptable. “Retarded” is not acceptable. “Suffers from” is not acceptable. “Afflicted with” is not acceptable “Crippled” is not acceptable “Normal and regular” are not acceptable but “able-bodied” is acceptable. 74 wabisabi
CHANGINGLABELS The words we use every day might create labels that leave people with disabilities feeling unfairly excluded.
By Carissa Davis
A LABEL is a word or phrase used
to describe a person or group of people. We use labels like “student” and “teacher” to describe those in academics, “chef ” to describe those in the culinary field and “doctor” in the medical field. We also use race and ethnicity to label people. Labels help us put people into groups in almost every aspect of life. But what about the labels we use when talking about people with disabilities? When we call someone “disabled” or “handicapped,” we need to think about the connotation behind those words and how that person might feel about them. Labels, although helpful when identifying people, can also create stereotypes and inaccurate representations that are offensive to people who have disabilities. Labeling creates difficult situations for everyone involved. People might see themselves differently than the way
a label describes them. The language people use creates categories and identities that might not be welcomed by the people being described. The way people are labeled can also be unfair in the sense that no two people are alike. Labels, grouping people together often by one characteristic, say little about the character, personality or interests of the people being labeled. By using inclusive language, we can help others see that people with disabilities are more like people without disabilities than they are different from them. Always use what’s called “people first” language. When describing someone with a disability, you would say, “that person who has autism” rather than “that autistic person.” People first language describes what a person has instead of what a person is. It doesn’t take away the humanness of a person with a disability the way a label can.
PHOTO ILLUSTRATION CREATED WITH WWW.TAXEDO.COM
avoiding labels