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.

UCP Seguin Volunteers Show Support for Vets at The Moving Wall

UCP Seguin of Greater Chicago paid a visit to The Moving Wall as it passed through Berwyn, Illinois August 7 through 11. The Wall, a smaller replica of the Vietnam Veteran Memorial in Washington D.C., has been touring the United States for 30 years. Berwyn Mayor Robert J. Lovero and the Berwyn Development Corporation sponsored the wall’s visit to the Chicago areas and and UCP Seguin’s “Community Connections” program jumped in to provide some of the many volunteers needed to ensure a meaningful experience for local veterans and others. 

A group of people, some older, some younger, posing for a picture in the middle of a field.

Seguin volunteers, including people with disabilities and staff members, helped loved ones locate the names of their friends and family members on the exhibit. Afterwards they assisted with routine maintenance of the exhibit.

“We are especially proud of the way people with disabilities and staff generously contributed to this poignant memorial,” stated John Voit, UCP Seguin President and CEO. “The Moving Wall brought together, side by side, people with and without disabilities to commemorate the brave souls we have lost to war. Not only do the people we serve benefit from this experience, but so does the whole community.”

The “Community Connections” program helps people with disabilities give back to their community. UCP Seguin of Greater Chicago is an affiliate of United Cerebral Palsy serving 1000 children and adults with disabilities throughout the Greater Chicago area.

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.