Austin’s Journey

The following is a guest post from Jenny Schmit, a physical therapist and researcher at Cincinnati Children’s Hospital Medical Center who works with a client named Austin. Read the story of Austin’s personal journey from frustration to celebration below:

“I work primarily with children who have Cerebral Palsy (CP).  Through work, I have had the privilege of meeting a young man named Austin.  Austin is 17 years old and lives in Batavia, Ohio.  Images of his brain suggest that he had a stroke when he was in utero.  He has hemiparetic CP.  Austin plays the computer and watches television.  He is a teenager and like lots of them, he spends an awful lot of time sitting still.   Austin

Although the damage to Austin’s brain will not get worse, his mobility and function can continue to deteriorate. Unwelcome changes to bone, muscle, and the cardiorespiratory system can occur over time when patients with disability aren’t proactive. One of Austin’s best defenses is also a hot topic in public health today. Research suggests that decreasing the amount of time we spend being sedentary, and increasing the amount of time we spend engaged in physical activity is critical for everyone, but especially for children with CP!

At a clinic visit in April of 2014, Austin felt frustrated. Physical fitness testing at school meant running a mile, and it didn’t go well.

He seemed to be compelled to do something about it. Austin set an admirable goal; he announced that he would like to run, in its entirety, a 5K race.  He scoured the internet for his just right challenge, signed up for the Panerathon, in Mason, Ohio, which raises money to fight hunger (probably because the race includes a giveaway of free Skechers). He named the team that would support him the CP Warriors.

He worked tirelessly over the summer.  He spent Mondays, Wednesdays, and Fridays with outpatient physical therapists at Cincinnati Children’s.  He strengthened legs. He grew better abdominal muscles than most of the healthcare professionals who treat him. He practiced coordinated activities like skipping and jumping.  He walked on a treadmill.  He did silly things, like moving rings from one cone to the next with his foot or kneeling on top of big therapy balls without holding on.  And he ran.  He ran around the Medical Offices Building and met the people who live in the neighborhood.  He ran up and down the big hill that the Hospital lives on and doctors and nurses clapped for him.  He ran in the August heat and sometimes in unexpected rain. Every weekend, he ran around the trail at Lunken Airfield, with a team of volunteers from the hospital and CP Clinic and people who believed in him.  He ran with a dog, and sometimes a donated iPod shuffle and Rodney Atkins.  He ran while he talked about zombies and how to beat Halo and fried pickles.  He never ran without smiling.  His Mom filled a scrapbook with photos because while he ran, she and her husband filled up with pride.

Two things happened during this journey.

One is that Austin grew.  He threw up during a mile run in physical education class.  On Sunday, September 21, he will finish the 5K faster than many individuals without physical disability.

The other is that the people around him grew.  We thank him for his inability to perceive hurdles.  We thank him for reminding us that few things are out of the realm of possibility.  And we thank him for reminding us to carry ourselves forward (unless we are practicing walking backwards).

Please share his story.

If you live near Mason, Ohio, please come to applaud him at his finish line this Sunday.

And for heaven’s sake, can someone please make sure he gets a pair of size  9 shoes?!”

New Film Features Comedian with Cerebral Palsy

A new film released on Friday features Josh Blue, a stand up comedian with cerebral palsy known for winning NBC’s Last Comic Standing competition in 2006 and subsequent comedy specials on Comedy Central and Ron White’s Salute to the Troops on CMT. Dat Phan, who also competed to be a Last Comic Standing also stars.Josh Blue

“108 Stitches” follows a baseball team with one of the longest losing streaks in college history as they come to the realization that the school, led by the corrupt and unethical President of the University, has plans to disband the entire program.  Hilarity ensues as the misfits have just one afternoon to execute a plan to fill the stadium, sign the top recruit on the planet, and help send their coach out with a bang. Josh Blue stars as an unlikely pitcher who spins wild throws in just about every direction but the batter’s.

Affiliate UCP of Los Angeles, Ventura and Santa Barbara Counties was invited to the exclusive Hollywood premiere of the film this week and got a chance to speak with Josh Blue and the producers of the film about the character.

“Josh Blue said what he most liked about the character is that he is treated equally.” said Amy Simons, Chief Development Officer of UCP of LA. “Pretty much every one in the film is made fun of and Josh’s character is no exception. He’s not singled out because of his disability.

Order your copy now through this link and the producers of “108 Stitches” will donate a portion of the proceeds to UCP to help provide services support for people with disabilities.

Enabled by Design-athon Happening This Fall

Design-athonUnited Cerebral Palsy is bringing you another great event this fall! Sign up now to attend Enabled by Design-athon: D.C. Edition November 5-7. UCP’s Life Labs initiative is hosting this dynamic event to encourage innovation by designers, inventors, hackers and makers for the benefit of people with disabilities.

Spread the word to those you know who have the big ideas and perspective that have made three previous events in London, D.C. and, recently, Sydney, Australia, such a success. We’re looking to bring together teams of dreamers, including people with disabilities, to design and prototype accessible products which provide innovative solutions for the everyday challenges faced by people with various disabilities.

We’ll kick things off Wednesday evening, November 5 at the Great Hall at the Martin Luther King Memorial Library, where the public is invited to network and hear from keynote speaker Adrienne Biddings, Policy Counsel for Google. Adrienne will bring her expertise in making communications media accessible, diverse and responsive to the needs of all segments of the community. Other speakers include Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/ and representatives from iStrategy Labs. Also participating is the Corcoran/GWU School of Arts + Design.

Thursday, November 7, begins the two-day design workshop at Google’s D.C. offices where team will compete to come up with the best design. A $25 registration fee is required for the workshop, however, the Wednesday evening event is free and you do not have to participate in the full workshop to attend (registration is required and space is limited)

“This is an opportunity for designers, technologists, engineers, students, caregivers and people with disabilities to collaborate and learn from each other how to use human-centered universal design concepts to solve every day challenges,” said Marc Irlandez, Director of Information, Technology and Life Labs at UCP. “We believe good design goes a long way towards helping people live as independently as possible by making day-to-day tasks just a little easier.”

The event is sponsored by Google, Sprint Relay, PCS Engineering, Sugru and the CEA Foundation.

Registration opens today! Get more information at http://ucpdesignathon.org/.

Google LogoSprint RelayCEA-Foundation-Logosugru-a496657ae9f8fc8b31a1207b5202ff56pic0_44331

New Event Series for Young People with Disabilities and Young Veterans

United Cerebral Palsy (UCP) and Student Veterans of America (SVA) announce a unique partnership that will allow both young adults with disabilities and young veterans to network and increase engagement and collaboration. The project was developed with the support of the National Youth Transitions Center and the Youth Transitions Collaborative (www.thenytc.org).SVA Circle JPEG

An educational series of events called “Engage: A Diverse Event Series” will take place between September and December 2014, covering finance, adaptive sports, disability and military history and wrapping up with a social evening of networking. The events will be open to youth and young adults with disabilities from ages 14-26 and veterans under the age of 35 in the Washington, D.C. metro area. Each event will have a specific subject of focus, addressing key social and educational components and offer a welcoming atmosphere.

The events are free but space is limited for each event, so registration is required. The hope is that by bringing together people from different backgrounds, they will be able to better learn from one another about their individual and shared experiences. Overall, the event series is designed to be a basis for further collaboration within the D.C. area, and serve as venue to further spread best practices.

EVENT DETAILSAdaptive Sports

Wednesday, September 24 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Financial Education
Network and share your challenges with optimizing financial resources with financial planning experts including representatives from TD Bank, who will offer advice and guidance through interactive budgeting activities. Food and drinks will be provided!


Tuesday, October 21 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Adaptive Sports
Continue to network while learning about adaptive sports with representatives from Disabled Sports USA who will share their stories, answer questions and demonstrate equipment. Food and drinks are provided!


Wednesday, November 19 from 1:00-3:00 p.m. (Date subject to change)

American History Museum at 14th & Constitution Avenue, NW.

Disability and Military History
Hear from the curatorial staff of the Division of Armed Forces History and the Division of Science and medicine at the Smithsonian Institution Accessibility Program followed by behind-the-scenes tours of collections of armed forces and disability history. Snacks and drinks will be provided. And, of course, enjoy networking!


Wednesday, December 10 from 6:00 – 8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Networking Reception
Enjoy an evening filled with networking, food, beverages and music, as we wrap up our event series.

 

REGISTER BY CLICKING HERE!

 

Please contact O’Ryan Case, UCP’s Director of Membership and Public Education at (202) 973-7125 or ocase@ucp.org if you have any questions.

UCP’s STEPtember Challenge Begins Today!

10,000 Steps Daily Minimum

 

2,000 participants across the U.S.       are taking 10,000 steps a day from September 3-30                 in support of UCP.

United Cerebral Palsy (UCP) is pleased to announce the launch of the third annual STEPtember fundraising event today, formerly known as the World CP Challenge. STEPtember is an international health and fitness event that aims to raise awareness and support for individuals with disabilities and their families.

From September 3-30, STEPtember participants will get active while supporting a great cause. Throughout the event, more than 5,000 teams worldwide will challenge themselves to take 10,000 steps a day. Each of the steps—or bike rides, yoga classes, or physical therapy sessions, as nearly any activity can be counted—will propel the teams up virtual mountains and track their progress. Teams can compare their fundraising and step activity against others from around the world, racing each other up the seven tallest mountains and spurring their efforts to new heights. Together, the teams will help to raise critical support for the nearly 180,000 individuals with disabilities that UCP serves each and every day.

Already, more than $115,000 has been raised in the U.S., and well over $1 million internationally through thousands of participants. 

“UCP is very excited to kick off this year’s STEPtember event! This month promises to be an incredible, worldwide effort to raise awareness and support for people with disabilities. Steptember is such a great way for anyone, regardless of ability, to get active and truly impact our organization in the process,” said Stephen Bennett, President and CEO of UCP.

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the STEPtember campaign, like a of Team Hoyt, a father-son racing duo who have volunteered to be UCP’s STEPtember ambassadors this year. Team Hoyt

Here’s how to get involved in the STEPtember Challenge: 

1) Learn More –  Check out the FAQ section on the STEPtember website, learn more about the communities that UCP serves, and understand how to get started!

2) Register Today – It’s not too late to get involved! Register today at www.steptember.us and we’ll connect you with a local affiliate that can provide an event packet and information to jumpstart your involvement.

 

3) Donate Now – Even if you don’t want to take the challenge and register, support the cause by donating to the UCP National team. We’re aiming to raise $10,000. Every dollar donated will provide critical funds to sustain community programming, and purchase much needed equipment for individuals with disabilities and their families.

Steptember will culminate on October 1st with World Cerebral Palsy Day, a global innovation project to change the world for people with cerebral palsy. 

Change the World, Win Prizes

WCPD14_Logo_USA_HRThe World Cerebral Palsy Day “Invent It” contest is heating up and there are big prizes out there for the best idea. Do you have an idea that could “Change the World in One Minute” for someone with a disability?

World Cerebral Palsy Day is a global awareness and innovation project designed to gather ideas from people living with CP and their supporters and to make the best of those ideas a reality. The first World CP Day in 2012 generated more than 470 ideas for a global competition to prototype them. The winning idea was a solar powered wheelchair inspired by a submission from a man in Turkey and turned into reality by a team at the University of Virginia. World CP Day represents people-power at its best. Who knows, your idea could the one that changes the world for a person with a disability and earn you up to $30,000 in prize money!

All you have to do it submit your idea via text or a short video that can be read or viewed in one minute by October 31. Just visit www.worldcpday.org to submit your idea for what might change the world for a person living with CP or another disability. Ideas will be judged this fall and a call will go out for inventors, innovators and engineers to create designs or prototypes for the winning ideas in January. Winners will be announced in June and awarded their prize.

However, winning it all is not the only way to win. Spot prizes of Apple iPads will be given away during September and October to the most creative and innovative ideas to date and a popular vote contest will be held via social media in October will receive a $500 People’s Choice Award. So, don’t dealy – get your ideas in to www.worldcpday.org today.

UCP Chats with U.S. National Paralympic Soccer Team

UCP recently spoke with Stuart Sharp, Head Coach of the U.S. National Paralympic Soccer Team, and two of the team’s players, Chris Ahrens and Rene Renteria to learn more about the sport. Chatting with us fresh after a team’s practice in San Diego, California, Sharp discusses the rules of the sport, its classification system, ways people can become involved and more. Ahrens, who has cerebral palsy and Renteria, who has a traumatic brain injury, share their stories of how they became involved with Paralympic soccer, as well as discuss their training routines. Check out the full video below! If you would like to learn more, you can follow the team on Facebook and Twitter or visit http://www.ussoccer.com/paralympic-soccer.

 

Remembering a Great Camper, Volunteer, Staff Member and Brother

Guest post by Bill McCool, Executive Director of UCP of Delaware

 

Petey & Mary 2

Peter Collins was a camper, volunteer and staff member for United Cerebral Palsy of Delaware’s Camp Manito.  Mary Arden Collins, who is a singer/songwriter in Los Angeles, recently produced a video about her wonderful brother Pete, who passed away in May of this year.  The video tells a great story about Pete, who found ways, both big and small, to give back to the camp and the people he loved.   

Pete started at Camp Manito when he was three years old.  His mother put him on the bus that came to pick him up at their house, but she secretly followed the bus to make sure that he was going to be ok.  It must have worked out, because for the next 35 years, Pete came to camp every summer.

Mary Arden also has her own camp memories.  As a teenager, she became one of the camp volunteers and eventually a counselor.  Mary Arden pursued a music career, but she has always been proud of her association with UCP’s Camp Manito.  When she would come back to Delaware, she would come to the camp and perform for the kids.  She and Pete, who played a bodhran drum, performed together.

Pete & Mary edit.jpg

There has always been a sense of family at UCP’s Camp Manito, probably because we have watched so many children grow up here.  As small children, they are campers; as teens, they become volunteers; as high school and college students, they become staff; as adults, they move into the community and they find ways to give back to the program and to the kids who are following after them.  And while the progression is not the same for everyone, there is a feeling of belonging and sharing that envelops all of the staff, volunteers and campers.

When Peter was too old to attend as a camper, he became one of the camp staff and then a volunteer.  His annual position here was camp receptionist.  He answered the phone, directed callers to UCP staff and took messages.  In the morning, he greeted campers and their parents when they arrived; in the afternoons, he used our public address system to call campers to the lobby when their parents came to pick them up.  He chased down staff to give them their messages.  During the off season he stayed in touch with his camp friends, calling them and talking about good times at camp, telling them he was anxious for summer’s return. He was here every June; he always came back to take care of the phones and do his job.  He was good at what he did, and he was reliable; we always knew we could count on him.

Like any charitable organization, UCP has had its up and down periods, and during one down period, UCP had to cut back the number of weeks the camp could be open from six to four weeks.  Pete made a decision that changed the course of that summer for all of the children who were here.  He donated enough money to help UCP stay open for an additional week of camp.  His love for the camp, our campers, and the work he was doing meant a great deal to Peter.  He gave his donation happily, and he was here that week doing his job as usual.  His donation meant others could enjoy what he had always enjoyed – a longer summer together with the friends they loved.

Pull together any group of adults who attended camp when they were younger and the stories you will hear will amaze you.  It’s the power of camp; it’s the power of their shared experience.  They have an appreciation for the program and a love for the people they grew up with.  Peter was that person too.  He showed his deep feelings for our children and the camp that particular summer and every summer he was here.  We lost Peter this year, but he will never be forgotten by the folks who all shared the same love he had for Camp Manito.

Please take a few moments to watch and hear the video put together by Mary Arden.  The song was written by Mary Arden and Pete was her inspiration.

Bill McCool

 In Memory of Peter Collins, by Mary Arden

 

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!”

Navigating the Worlds of Education and Employment with a Disability

Special guest blog post by Maureen Marshall, Electrical Engineer

 

Maureen Marshall 3

Having cerebral palsy (CP) definitely has its challenges and there is no denying that, but there are also so many possibilities for achievement in both education and where that education leads you down your career path.  I was diagnosed with CP at the age of 2 and, though my parents were told I may never attend regular classes in school or actually ever learn to read and write, I proved everyone wrong and successfully attended regular classes– even advanced classes because I pushed myself to prove everyone wrong and excel.  I graduated, not once but 3 times: I graduated from high school; I have a Bachelors of Science degree in Electrical Engineering, a Master of Business Administration degree in Technology; and a Certificate in Strategy and Innovation from the Massachusetts Institute of Technology (MIT).

 

Believe it or not, the biggest challenge I had in school was with the teachers.  While I was in elementary and middle school, I was forced out of orchestra class because I did not hold the bow correctly and I failed typing because I did not type with both hands.  In both cases, neither teacher was willing to recognize that I physically could not do what they wanted me to do, nor even the fact that I was able to succeed through modifying the way I performed the task.  Not having full use of my right side, I held the bow with a firm grip; no pinky finger up and I typed with one hand; not both. 

As I moved through high school and college, I learned to not register for classes that would be a physical challenge for me and cause further pass/fail issues, such as gym and swimming classes.  It was not worth the fight with the school administrators to get them to accept my limitations.  Instead, I enjoyed sports with my friends, who accepted these limitations and took swimming classes on my own where there was no pass/fail criterion.  When it came to choosing a field of study in college, I recognized that I would need a career that focused on my strengths and one that I could advance in.  I always loved and did well in math and science courses, so engineering was the path I chose to take– which I have had great success. Engineering allows me to use my knowledge and experiences, with little or no physical activity. There are so many different engineering positions and fields to chose from– one can definitely find one that fits not only their strengths but their abilities.  I have also found that industry is very accommodating to those with disabilities and will make every effort to ensure all obstacles are removed.  For instance, if you chose to work in a manufacturing plant, where getting around can be difficult, they have been known to install elevators or even mark walkways to allow wheelchair accessibility.

Maureen Marshall 2

I’ve experienced some interesting moments from the time I graduated to now– and one I’ll never forget is my first interview!  During the middle of the interview, I had to leave the room to get a form at the request of the person interviewing me and, when I came back to the room, I landed flat on my face.  For some reason, from the time I left the room to re-entering it, someone had placed a 2×4 board across the bottom of the doorway, which I tripped over when walking back into the room.  Mortified and embarrassed, I decided to get up as quickly as possible, gain my composure, laugh (instead of cry) and simply comment, “Well, that wasn’t there before!” and move on with the interview like nothing happened.  To this day, I will never know if that was an interview tactic or a simple mistake of someone working in the office area.  However, I am happy to say I got the job and I think a lot of that had to do with how I handled that situation! 

I have never called out my disability to any potential employers or future colleagues and over the years very few have inquired, even though it is very noticeable.  What worked for me, is taking on every situation, like there is nothing limiting me, and simply ‘adjust’ as needed.  An obstacle I have to overcome on a daily basis is when I am with a group heading either to a meeting or out to lunch and they head for stairs.  I will simply let them know to meet me by the elevator or ask where I could meet them after I find the elevator.  I have to say I have been very blessed with employers and colleagues that have never called out my disability either.  Do not get me wrong, there have also been a few challenging moments throughout the years too.  

Several years back, there was an incident where I was out of the country for a business trip. While at dinner with a group of colleagues, one of them decided to call me “Crip” (a term short for cripple).  I was shocked when I heard this reference and especially from a superior.  At first, I ignored what I heard, hoping I was mistaken.  However after he repeated it several times, I quickly stated in return, “I am sorry.  Are you talking to me?  Because if you are, I do not answer to that, nor does my disability change who I am and why we are here.”  Unfortunately for him, he continued to refer to me as “Crip,” even after my request throughout the dinner.  All I could do was continue to ignore him.  I was very surprised that the others around the table never participated nor tried to stop him right then and there.  However, once we landed back home and returned to work, he was fired on the spot because they had addressed their concerns with our Human Resources Department without me knowing– taking quick care of the issue. 

I have also had bosses that have treated me differently than others, not because of my performance, but because they were not comfortable with my disability.  In cases like this, I have learned it’s best to move on and get out from under them as quickly as possible– take actions in my own hands and find a new position.

Maureen Marshall 1

In today’s day and time, if one is treating someone differently– not promoting them, holding them back from situations or otherwise– it’s their problem and not yours! 

In the end, I am very proud to state that I am witness to the fact that the professional environment for persons with disabilities has improved over the last 20 years.  More and more buildings are accessible and employers are welcoming the diversity in the workplace.  Unfortunately, there will always be those that still need to be educated on acceptance of persons with disabilities.  The good news is that we are the change agents and it is up to us to teach them that those with disabilities are very capable of being high performers.

If I were to offer advice to students with disabilities who are interested in careers in engineering and technology, it would be– do not let anyone or anything stop you! 

 

Marshall is from Royal Oak, Michigan and has been married for nearly twenty years. She has three sons and has held a career as an Electrical Engineer in the automotive and defense markets for more than twenty years.