Family Ties Ensure a Life Without Limits

The following is a guest post by Betsy Mays, 24 who has three older siblings including Blake (31), Lauren (30), and Jamie (26). Lauren has Cerebral Palsy. 

Mays Family at the Beach

Mays Family at the Beach

“My sister Lauren is one of my best friends and she has Cerebral Palsy. Growing up I don’t think I realized that there was anything too different about my sister. I knew that she couldn’t walk, but that didn’t stop my brothers and I from wheeling (or dragging) her around. I knew she couldn’t talk, but my family created a type of communication that worked for us; we are all REALLY good at 20 questions. I knew she couldn’t care for herself, but that’s what we were all there for!

I loved and still love being around my big sister at every waking moment. She is my audience when my parents or brothers couldn’t stand to watch one more of my performances. She is my go to person when I want to go swimming, and she is the one person in my family that knows all my secrets!

Mays Family PortraitGrowing up my mom always told my brothers and I that not everyone would always be as kind to my sister as we would hope or that people may stare at her because they simply didn’t understand what Cerebral Palsy is. So, being the outspoken little ball of joy that I was, I loved to educate my friends (and strangers who loved to stare) about my sisters condition! I would let everyone know that my sister wasn’t “crippled” but that she was just like everyone else, and she just so happened to have Cerebral Palsy.  My sister has always, and continues to, live a life without limits.

I remember when my siblings and I were little we would put her on a sleeping bag or a bean bag and pull her around the house so she could play with us. My brothers and I made sure to always include her, and my parents made sure that Lauren was involved in anything she wanted to! She was an excellent student, participated in school plays, Special Olympics, and and graduated with a regular high school diploma!

She loves to go to the beach, swim, and loves to be around the whole family. My nephews and niece are growing up around my sister and they love their Aunt LaLa. At such a young age they have learned that a person is not defined by a disability!

Now that we are all older, my sister has developed health problems that my family was not quite prepared for. We have never really needed any extra assistance because my sister’s health has never been an issue that we couldn’t handle on our own. Lauren was the person in our family that was virtually never sick! Thankfully my family is really close and we have great friends who continue to show us love and support, and my sister is tough as nails!

Mays Halloween

Halloween

I am thankful that my sister has always been treated with respect and compassion by everyone she encounters. All of my siblings have grown up to be in helping professions- go figure! Blake is a police officer, Jamie is currently in school for health promotion, and I am a social worker. We all try to be advocates for people living with disabilities and I hope that other families out there are doing their best to educate family, friends, and strangers about what it means to live with a disability. I cannot speak for everyone, but my family lives to ensure that Lauren can live a life without limits!”

An Open Letter to Weird Al Yankovic

Dear Mr. Yankovic (may we call you Weird Al?),

Thanks for your catchy summer hit “Word Crimes.” We were having a lot of fun bopping to the beat of this parody of “Blurred Lines” and laughing along with your clever lyrics. That is until we reached the final chorus, where you sang “cause you write like a spastic.”

You may not be aware, but “spastic” can carry a very un-funny meaning for people born with cerebral palsy (CP) and other disabilities and their families. We understand you were poking fun at people who don’t use proper grammar by implying that they lack intelligence. There are only so many ways you can say that – “moron,” “clown,” “stupid” – so we understand you have to reach a little for more examples.

But, you should know that “spastic” is a term that describes certain aspects of CP and it has no bearing at all on a person’s intelligence. The term is far too often used to insult people with disabilities, instead of simply describing a condition. Similarly, the word “retarded” long ago moved from the realm of clinical jargon to disrespectful slang for someone with an intellectual disability. It is now rejected as being not only outdated, but also incredibly offensive. When you go on to say “get out of the gene pool, try not to drool” in your song, you are portraying people with disabilities (inaccurately) as somehow less intelligent and less valuable than other human beings.

Here are some facts about CP that you might want to know: there are 17 million people in the world who have CP; it is estimated that 1 in 323 children is born with CP (that’s a pretty big fan base); CP results when an injury to the brain occurs before, during or after birth; and CP can affect mobility, speech and other functions specific to which part of the brain was injured. While people with CP sometimes have other co-occurring disabilities, including intellectual disabilities, it doesn’t automatically mean that they lack intelligence (or a good grasp of the English language). And, it certainly doesn’t mean that they are not deserving of your respect.

Weird Al, we hope you will take this into consideration when you’re writing. We all love a  good laugh,but not at the expense of people with disabilities and their families and friends.

Thank you,

United Cerebral Palsy 

Albert Pujols “Pinch Hits” to Support 20th Anniversary of the Toys“R”Us Toy Guide For Differently-Abled Kids®

 

Toys“R”Us® announced the release of its 20th Anniversary edition of the Toys“R”Us Toy Guide for Differently-Abled Kids®, an easy-to-use toy selection resource for those who know, love and shop for children with disabilities. Now in its second decade of annual publication, the complimentary shopping guide is a go-to for families, friends and caregivers involved in the special needs community, and is available in Toys“R”Us® and Babies“R”Us® stores nationwide, as well as online at Toysrus.com/DifferentlyAbledin both English and Spanish. This year, Toys“R”Us is teaming up with baseball World Champion, proud father and special needs advocate, Albert Pujols, who appears on the cover alongside Cameron Withers, a 5-year-old boy from Los Angeles.

While Pujols is known for his passion on the diamond, his dedication to the special needs community is even greater. As a parent to a daughter with Down syndrome, Pujols serves as a vocal advocate for children with special needs through the Pujols Family Foundation. Since 2005, the Pujols Family Foundation has worked diligently to provide children and families living with Down syndrome with the tools they need to thrive. As part of the launch of this year’s Guide, Pujols will bring that same devotion to his partnership with Toys“R”Us in helping to reach its customers nationwide and raise awareness of this one-of-a-kind resource.

“As a proud dad to my beautiful daughter, Bella, who lives with Down syndrome, I understand how important it is to have resources like the Toys“R”Us Toy Guide for Differently-Abled Kids to help in making informed choices to support a child’s development. And, as a professional athlete, I truly value the importance of play and recognize the impact it has in the lives of children who face everyday challenges – for these kids, playtime is not just about fun, it’s an opportunity to explore their strengths and experience success in reaching each new milestone,” said nine-time All-Star baseball player, Albert Pujols. “I have a tremendous amount of passion for this cause, and I’m excited to partner with Toys“R”Us to make it easier for gift-givers to find toys for the special needs children in their lives that will inspire their imagination, encourage inclusive play and help them develop new skills.”

Trusted Toy Recommendations Tailored to Children’s Individual Abilities

Serving as a trusted resource for family, friends and caregivers of children with special needs, the Guide is packed with everyday playthings selected for their unique ability to help kids build critical skills, such as creativity, fine and gross motor and self-esteem, during playtime. Each of the toys featured in the 63-page buying guide has been vetted in partnership with the National Lekotek Center, a nonprofit organization dedicated to making play accessible for children of all abilities. 

To equip parents with targeted recommendations as they set out in selecting a toy for their child’s specific set of abilities, each toy in the Guide is paired with skill-building icons, which help users easily identify the playthings that are most suitable for the child they’re shopping for. The following are examples of toys featured in the 2014 Guide, highlighted by the skill they promote:

  • AuditoryBaby Einstein Octoplush from Kids II®
  • CreativityMega Bloks Build ‘n Learn Table from MEGA® Brands
  • Fine MotorHot Wheels KidPicks Super 6-in-1 Track Set from Mattel®
  • Gross MotorMonster Dirt Diggers from Little Tikes®
  • LanguageDoctor Role Play Set from Melissa & Doug®
  • Self EsteemClassic Doodler with 2 Stampers from Fisher-Price®
  • Social SkillsElefun & Friends Chasin’ Cheeky from Hasbro®
  • TactileCyclone from Radio Flyer®
  • ThinkingConnect & Create Geometric Set from Imaginarium
  • VisualMarker Maker from Crayola®

Through the Toys“R”Us Children’s Fund, Toys“R”Us, Inc. has long supported the special needs community through organizations such as: American Society for Deaf Children, Autism Speaks, the Pujols Family Foundation, HollyRod Foundation, Muscular Dystrophy Association, National Down Syndrome Society, National Lekotek Center, National Organization of Parents of Blind Children, National Center for Learning Disabilities, Special Olympics, Spina Bifida Association and United Cerebral Palsy. For more information, please visit www.toysrusinc.com/charitable-giving/

Shopping the Guide, In-Store, Online and On-the-Go

Those who prefer to browse online can take advantage of the shop-by-skill option at Toysrus.com/DifferentlyAbled. Customers can narrow their toy selection by focusing on a specific skill to refine their search. Shoppers can also view the Guide via their smartphone by scanning the QR code featured on dedicated signage located at their Toys“R”Us store’s Customer Service Desk. Those searching for mobile apps can also download the official Toys“R”Us App Guide for Differently-Abled Kids. Using the same skills criteria featured within the traditional Guide, the App Guide provides a convenient, on-the-go resource for viewing, researching and comparing mobile apps designed to build individual development skills for children of all ages. All apps featured within this helpful resource can be found in the App Store for iOS or the Google Play Store for Android.

In addition to finding toy recommendations, parents can peruse the Guide’s “Top Ten Tips for Buying Toys,” prepared by the National Lekotek Center, as well as “Safe Play Tips for Children with Special Needs,” which were created based on research collected from leading safety and special needs organizations, to help avoid playtime injuries.

Join the Conversation Using #ToysforAll

Throughout the year, Toys“R”Us will continue to leverage its social media channels, including Facebook, Twitter, Instagram and Pinterest, to share toy-buying tips and recommendations found in the Guide, as well as exclusive behind-the-scenes content from the cover shoot with Albert Pujols. The company is encouraging fans and followers to join the conversation and support the power of play in the lives of all children by using hashtag #ToysForAll. For more information about the Toys“R”Us Toy Guide For Differently-Abled Kids, visit Toysrus.com/DifferentlyAbled.

Thank You to Our Champions in Congress!

 

UCP has long relied on several advocates in Congress to help us push for positive Federal policies for people with intellectual and developmental disabilities. Some of these champions – such as Senators Tom Harkin, Jay Rockefeller, and Carl Levin and Representatives Henry Waxman, George Miller, and John Dingell are retiring and passing the baton to the next generation of legislators. 

This video honors those retiring Members of Congress for their legislative successes on behalf of people disabilities and was jointly developed by six national organizations – The Arc, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy. 

On behalf of UCP, we would like to say “thank you” to these champions and we look forward to working with other Senators and Representatives who would like to continue their work to improve the lives of people with disabilities and their families. 

 

New Superhero with CP Catches Stan Lee’s Attention

A medium-skinned man with shoulder-length black hair wearing a blue "mechanized" suit of armor with green accents. He is standing on a soccer field holding his helmet  in his hands. Underneath his right foot is a flaming orange soccer ball that has caught fire

An artist’s representation of Ammon

United Cerebral Palsy recently spoke with a young man who is bursting with ideas to change the world for people with disabilities. Some of his ideas came together in the form of a comic book superhero named “Ammon” – a semi-autobiographical representation of its creator, Aaron D’Errico. Aaron is the son of pro soccer player David D’Errico and has cerebral palsy. When he was just 11 years old he won the OMSI “Science of Superheroes” drawing contest and has been working to bring Ammon to life as a narrated motion comic to encourage reading among young people.  His project is getting a lot of attention from professionals and the media. Find out more about “Ammon” and Aaron below.

What inspired you to create “Ammon?” 

Aaron D’Errico (AD): Ammon began with my mom Cynthia’s encouragement to “write my own story,” and a desire to follow in the pro soccer footsteps of my dad, David D’Errico.  He was a USA Men’s National Soccer Team Captain, and first-round draft pick for an original NASL team, The Seattle Sounders.

A superhero needs an occupation with the freedom to take action at a moment’s notice.   So playing pro soccer is a good fit, with the world travel and requirement of peak fitness. I was also thinking of Sean Connery’s James Bond who almost became a soccer player for Bonnyrigg Rose when I combined the soccer, superhero, and spy elements in the Ammon character.

Ammon’s abilities are dependent on making choices that build positive strength of character.  He’s strongest when following his bliss, aka being in a “flow state” by turning challenges into triumphs. Ammon gains ever-evolving powers somewhat based on the abilities of a dragonfly.  They’re useful in both soccer and spying – 360˚ vision and awareness, motion camouflage (appearing still when actually moving).  Much like a dragonfly, Ammon molts his disabled body.  He emerges with a perfect super-powered one.  That perfect form is my homage to my dad as an archetype of athleticism, and my Mom, who was a professional model when she was younger.

 Is Ammon somewhat semi-autobiographical?

AD: The human potential for change and improvement has fascinated me since childhood. It’s real and it’s powerful.  I learned that myself in school, going from C’s and D’s to earning almost all A’s by my senior year. Ammon too loves human potential and secretly dreams of being a soccer champion like his dad. Ammon is also inspired by his mother’s occupation in the healing arts, becoming a med student, hoping to help others have better lives, something for which I also strive. Her consistent compassion made me want to be of service to others.

What other elements of your real life do you incorporate in Ammon?

AD:  In 1996, I wrote Doctor Nora Davis at Seattle Children’s Hospital to inquire if virtual reality technology could be used to help people with cerebral palsy by re-wiring the brain to have the proper electrical signals fire. I later gave Ammon the job of a VR/augmented reality rehabilitation specialist, helping people living with CP, TBIs and spinal injuries. This is something I want to incorporate into a video game that promotes both empathy and ability. 

Tell us more about your dad. 

AD: My dad grew up in a large family in NJ where he honed his skills playing soccer.  His accomplishment despite adversity is what I admire most about him. He also gave me a love for soccer.  One of the reasons I have a passion for it is because it’s a democratic sport for people of all walks of life and ability levels.

Why did you decide to use “Ammon” to promote reading? 

AD: Comics have pictures that give clues to the accompanying words. It’s a help in learning. My mom helped me overcome the challenges of a learning disability as she read to me using with the Peabody Rebus reading program. I want to turn Ammon into a semi-animated narrated motion comic, which will have the picture-text-audio connection, when the art panels include word balloons and captions, making it a new, engaging way to experience reading with comic books, making them as useful as they are entertaining.

Tell us more about narrated motion comics – how does that work?

AD: A motion comic is a digital comics story with the familiar elements of printed comics, such as artwork panels, word balloons, captions, etc., with the added features of narration, limited movement, filmmaking techniques like cuts and dissolves, a soundtrack and sound effects.

Who is narrating “Ammon’s” story? 

AD: Rock n’ Roll Hall Of Fame DJ (and one-time NASL Seattle Sounders co-owner) Pat O’Day.  Pat will narrate Ammon’s story and voice different characters. It’s an honor to have his support. 

How is the project going so far?

AD: Family and friends have supported the project locally. Funding it has been a challenge. Now I’m reaching out to supporters online to realize the goal of making Ammon’s adventures into narrated motion comics by doing a fundraiser through the crowd funding site Crowdtilt.com. Also, The Ellen DeGeneres Show is currently doing a segment about funding inspiring projects called “Are You Trying to Get a Project Funded?” If anyone would like to write in to her show about my goal to make motion comics to promote reading, here’s the link.

I understand “Ammon” is getting a lot of attention. Where has the project been featured? How are people responding to your idea? 

AD: The response is enthusiastic. One TV story by sports anchor Aaron Levine and photojournalist Walker Anderson actually won an Emmy. It was also shown in USA Today Sports For The W!n.  Ammon has been featured on Paul Chadwick’s blog, and Talenthouse.com as part of a global invite to find an artist to draw the first story.  It led me to a terrific illustrator, Addison Rankin.  Other coverage includes Stan Lee’s websiteThe Bob Rivers ShowKing 5 New Day NWThe Seattle Post-IntelligencerGood News Networkthe AMS Vans BlogBJ Shea’s Geek Nation, and soon to be featured in soccer.com and The Seattle Sounders FC’s RAVE TV.

I understand you heard from Stan Lee, the great comic creator. Tell us what he thinks. 

Stan Lee

AD: I grew up idolizing Stan.  I’ve tried to apply his insights on the empowering mythology of superheroes. In 2010, I had the honor of thanking Stan for sharing his wisdom. His enthusiastic reply became a personal mantra: “I expect great things from you!

What’s next for you?

AD: After the first issue of Ammon is funded and made, I’ll flesh out more adventures to send to a publisher. From there my focus is using the proceeds from the narrated motion comics of Ammon to make virtual reality/augmented reality biofeedback video games. These games could take the idea of putting people in another’s shoes even further than a comic, by giving players a real-time sense of what it’s like to live with limitations when they play as Ammon with CP at the start of the game, before he gains his super powers. To progress in the game, players must make positive choices despite limitation/frustration, thus gaining positive experience points to increase their abilities in the game – abilities that evolve in proportion to their empathy and positive strength of character.

Other goals include being part of Duke University’s stem cell trials for adults with CP next year. I hope to combine that stem cell therapy with Duke’s brain rewiring technology from Dr. Miguel Nicolelis, in conjunction with my biofeedback VR soccer video game concept of Ammon. The goal is combining different healing methods to create something more effective, like what Bruce Lee did for martial arts, resulting in a game that makes healing and rehabilitation fun.

Where can we get more information about you and your project? 

AD: The best way to get updates is via my Facebook page, or Twitter.  As for my art, this is my portfolio page on Talenthouse.com, and this is my website.

 

 

Former Deputy Secretary of Labor, LinkedIn VP, Business Leader to Contribute to UCP’s Mission

 

Seth Harris

Seth Harris, Former Deputy Secretary of Labor and Cornell Distinguished Scholar

United Cerebral Palsy (UCP) elected ten members to its Board of Trustees during its 2014 Annual Conference in Nashville, Tennessee including three members new to the organization. Seth Harris, former U.S. Deputy Secretary of Labor, Pablo Chavez, LinkedIn’s Vice President of Public Policy and a parent of a son with a disability, and Ouida Spencer, a long-time UCP advocate and volunteer from Georgia will join seven re-elected members to lead UCP into the future.

“Our Board of Trustees plays a critical role in guiding the UCP network forward, and we are honored to welcome such a talented and knowledgeable group onto the Board this year. We are very grateful for each new member’s dedication to our mission of enabling a life without limits for people with disabilities and their families, and look forward to their contributions,” said Stephen Bennett, President and CEO of United Cerebral Palsy, in announcing the selection of Trustees.

Profiles of the newest board members are below. To view the complete list including re-elected trustees, please visit ucp.org/about/board.

Seth Harris served four and a half years as the US Deputy Secretary of Labor and six months as Acting US Secretary of Labor and a member of President Barack Obama’s Cabinet before becoming a Distinguished Scholar at Cornell and joining Dentons’ Public Policy and Regulation practice. He did some consultancy work for UCP in 2007 and 2008, most notably as the designer of the programmatic work that launched UCP’s Life Labs.

While at the Department of Labor, Harris contributed to our country’s economic recovery and millions of Americans returning to work. In 2007, Harris chaired Obama for America’s Labor, Employment and Workplace Policy Committee, and later founded the campaign’s Disability Policy Committee.  He oversaw the Obama-Biden transition team’s efforts in the Labor, Education and Transportation departments and 12 other agencies in 2008.

Also, Harris was a professor of law at New York Law School and director of its Labor and Employment Law programs as well as a scholar of the economics of disability law and topics.

Pablo Chavez is Vice President of Global Public Policy for LinkedIn and the parent of a young son with cerebral palsy. From 2006 to early 2014, Chavez was a member of Google’s public policy and government affairs team, where he held several leadership roles developing and executing advocacy initiatives promoting access to the Internet and other technologies.

Before then, Pablo worked in the US Senate as a counsel to Senator John McCain and to the Senate Commerce Committee. Pablo serves on the Board of Trustees for St. Coletta of Greater Washington, which is dedicated to assisting children and adults with special needs, and serves as a board member and in advisory capacities for a number of technology-related organizations. A graduate of Stanford Law School and Princeton University, Pablo lives in Washington, DC with his wife and two children.

Ouida Spencer has been a licensed Real Estate Broker and consultant in Georgia and South Carolina for over 17 years.  Previously she worked in banking as Senior Vice President with SunTrust Bank and Group Vice President with Decatur Federal.

She specializes in locating homes that can be modified for individuals with special needs and has worked to acquire properties for over 500 people who required special accessibility modifications. Spencer is a tireless advocate for housing rights of individuals with disabilities.

Spencer was nominated to UCP’s Board of Trustees after years of dedication to UCP affiliates in her area and her other volunteer efforts. Spencer is a Member of the DeKalb Association of Realtors, Chairman of the Board of Directors of UCP of Georgia, Member of the UCP Master Board of Directors South Florida/Georgia/South Carolina, Vice Chairman and Member of the Board of Directors UCP of South Carolina and a member of the UCP Affiliate Services Committee. Other volunteer activities include serving on the Board of Trustees of the Rosebud McCormick Foundation for over 26 years.

Spencer is the Past State President of the Georgia Federation of Business and Professional Women Club’s, Inc.  She is currently serving as Treasurer of the Decatur BPW and was recently elected to the Family Extended Care, Inc. board.

A graduate of Georgia State University where she received both her BBA and MBA degrees, Spencer lives in the Atlanta metropolitan area.

 

 

Father and Son Racing Duo Inspire Teams to Get Active, Support UCP

Email Tile vs 3

United Cerebral Palsy (UCP) is honored to announce that Team Hoyt, Rick Hoyt of Sturbridge, MA and Dick Hoyt of Holland, MA, will serve as the 2014 Steptember event Ambassadors.

Steptember is a four-week event to raise awareness and support for people with cerebral palsy and other disabilities. Beginning on September 3, teams from around the world will challenge themselves to take 10,000 steps a day and fundraise along the way— and nearly any activity, including biking, physical therapy and yoga, can be converted into steps. Find out more about the event and how you can participate on the Steptember website. 

Team Hoyt will lend their “Yes You Can” attitude to rally teams participating in this year’s Steptember event. Last year, over 10,000 people worldwide participated in the challenge and raised nearly $1 million. Team Hoyt is committed to helping make this year’s event an even bigger success!

Rick Hoyt may use a wheelchair, but that has not stopped him from competing in over 1100 athletic events across the past 37 years. Together, Rick and his father Dick are known across the disability community and race circuit as Team Hoyt. They have run in 70 marathons – 32 of them being the Boston Marathon – and have competed in over 250 triathlons. After the pair’s first race in 1977, Rick said running felt like his disability disappeared. He felt free.

Rick was born in 1962 as a spastic quadriplegic with cerebral palsy– but despite these disabilities, Rick’s mind and spirit have always been strong.  His family supported his quest for independence and inclusion in community, sports, education, and the workplace, culminating with his graduation from Boston University in 1993. 

Dick travels the country doing corporate and community presentations, educating the public about disability awareness, and promoting the Team Hoyt motto: “Yes You Can.”  Through his presentations, Dick shares his lifelong commitment to changing attitudes and educating others on the world of disabilities. We look forward to seeing this message empower Steptember affiliates, participants, and supporters to adopt the same mentality between now, the event’s conclusion on September 30th, and beyond!

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the Steptember campaign, like a entering a marathon, is a way to show the world what you can do once you have committed to something,” said Dick Hoyt. “When asked to be a part of Stepember, Rick and I accepted right away, as this campaign aligns with the Team Hoyt mission of empowering people with disabilities”

“Dick and Rick Hoyt are the perfect ambassadors for Steptember. They truly embody their motto – “Yes You Can” – and show individuals with disabilities, their families, and the people who care about them how to ‘live a life without limits,’” said Stephen Bennett, President and CEO of UCP. “We are proud that they are on board to help inspire us all to take 10,000 steps a day toward an admirable goal.”

 Team Hoyt

For more information about Team Hoyt and the duo’s 37 years of racing, please visit their website at www.teamhoyt.com.

 

 

 

These Guys Should Be in the World Cup

 

By: Shirene Menon, Guest Blogger

UCP works to ensure that individuals of all abilities can live their lives without limits. This, of course, includes participating in sports! You have probably noticed that, with the 2014 FIFA World CUP going on right now, soccer/football is a hot topic throughout the world– so this opportunity to learn about the Singapore CP Football Team comes with great timing. We are also working on another blog post with the U.S. Paralympic National Soccer Team to share in our August newsletter. The team will share with us the many physical, emotional and social benefits that come from playing the sport and discuss ways individuals can become involved– so stay tuned!

These guys should be at the World Cup. Let’s get one thing out of the way: these guys have cerebral palsy. But what is important is that they play a serious game of football.

It’s a sweltering hot Sunday afternoon when I first meet the team at the Singapore Khalsa Association, where they train weekly. The sun is relentless. The guys are seated on the edge of the pitch, their coach Mohammed Zainudeen holding court with a pep talk.

They’re facing another team in a friendly match. The game kicks off soon enough, and I am introduced to the world of cerebral palsy and sport. For 60 minutes I see running, kicking, dribbling, passing, deft touches, shooting and scoring. The common term is disability. But on the pitch, the truer words are talent, passion, teamwork and determination.

Off the pitch, they come together to celebrate another weekly game wholeheartedly executed. The camaraderie is apparent in the easy smiles, chatter and jokes. Speaking to them and listening in on their conversations, I immediately catch on that they want to talk about football, about school, about plans, about sport, about girls, about futures. Not about their muscular condition.

They are footballers. There’s no place in their lives for self-pity or resignation.

They are liberated, full members of society. And by the way, they bagged Singapore a silver medal at the 7th Asian Para Games in Myanmar. They didn’t choose to have cerebral palsy, but you can certainly tell when these footballers are on the pitch, that they’ve chosen to live life large and full.

Keep living it large, Bala, Firdaus, Harun, Hitesh, Khairul, Nizam, Mubarak, Peter, Shafiq, Shahidil, Suhaimi and Taufiq! Want to know more about the team? Like them on Facebook and show your support at  www.ourbetterworld.org

 

Video shot and edited by Anshul Tiwari. Produced and written by Tsen-Waye Tay.

This story is brought to you by Our Better World, an initiative of the Singapore International Foundation – sharing stories to inspire good.

The Tottering See-Saw of “Empathy Exercises”

by D’Arcee Neal, UCP’s Manager of Institutional Giving

D'Arcee Neal

D’Arcee Neal

Being a person who is disabled and who works as a disability advocate is like being on a see-saw. I am tempted at times –influenced by society and my own experiences – to move into rage mode, because so much of what I see day in and day out doesn’t mesh with what I know is right. But then I tilt toward the other side which is a “woe is me” mode of pity, sympathy and understanding because I know that I can better get my point across by interacting with people in a gentle, respectful way. In reality, I think that effective advocates balance on the see-saw’s fulcrum, right in the middle. You can teach without being combative, but shoving the rage down inside of you and ignoring what’s wrong with a pair of rose-colored contacts in your eyes helps no one.

 So, when I saw a video this week of CNN’s Anderson Cooper as he tried an empathy exercise for people who have schizophrenia, I moved back and forth on the emotional see-saw as I tried to make sense of what I was seeing. I came across the clip after seeing comments on it from people in an online Cerebral Palsy group I belong to. They were posting angry comments about the purpose of empathy exercises and their effectiveness with the general public. I wondered for a moment: do empathy exercises really do ANYTHING?

Most of us (especially people with disabilities) already know that nothing accurately replicates another individual’s struggles. This is partially why struggles are so difficult, whether it be issues of race, disability, sexuality or any of the myriad possibilities in the human race. However, this isn’t to say that we should just shrug our shoulders. If the only people willing to learn about disabilities were doctors, then the world would be a much different place, and society might see medical professionals as little more than morbidly curious paparazzi with scalpels instead of cameras.

Thankfully, the world isn’t like that and we have people from all walks of life dedicated to learning about, dealing with, and understanding people with disabilities. But for those who haven’t crossed that threshold of understanding, then empathy exercises are one of the best ways to offer them the tiniest glimpse into another person’s world. 

In college, I had a friend who decided to live in a wheelchair for 48 hours as part of a sociology project. In my mind, I laughed because I knew there was a slim chance that he would actually do it, but I played along. Just rolling about 2 or 3 blocks to the cafeteria for dinner together, he was out of breath from the effort. He exclaimed that he needed to “pause” the experiment because he had to use the bathroom really badly. My facial expression said it all. And I think he began to understand what many see as the fundamental flaw of the empathy exercise: they end. My Cerebral Palsy is a constant, all-day, all-consuming affair, much like any permanent disability and I understand why some people are angry about the idea that it is possible to simulate it. The exercise cheapens and reduces the experience, in their opinion.

I think that if the experience is framed in the right way, it could be such that people would never forget it. Even if the experience isn’t particularly powerful, the understanding is there at least for the moment, so that people might think about it in the future, and that’s a good thing. Honestly, that’s what I think empathy exercises are about – not about changing someone’s perspective in a mind-blowing way, but introducing small changes which allows leads them to momentary understanding which might come back. 

Empathy exercises may not be the societal game changer many people want it to be, but you have to start somewhere.