Ms. Wheelchair Michigan 2014 Shares Journey to Parenthood

Are you a person with a disability who has ever wondered whether or not you would one day become a parent? Or are you a parent or caregiver who has ever had the same question regarding your son or daughter? Ms. Wheelchair Michigan 2014, Kelsey Kleimola, recently shared her story with UCP and discussed this very topic. See her story below!


by Kelsey Kleimola, Ms. Wheelchair Michigan 2014

 

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From a very young age, I’d always known I wanted a family.  I fantasized about being a mother, imagining a world in which my wheelchair didn’t exist.  Not because I felt sorry for myself, or because I didn’t think parenting would be a possibility, but because I honestly didn’t think all that often about having a disability, or that it might keep me from my dreams.  To me, having a disability was as much a part of me as breathing– something I’d lived with my entire life.  I’d learned early on that I could either let it define me or let it drive me.

 I was diagnosed with cerebral palsy when I was ten months old.  After being told, throughout many times in life, that I would never be able to do anything, and that any hope for a bright future looked grim, I worked hard to prove my naysayers wrong.  When they said I couldn’t do something, I pushed forward– and I did it.  I attended a public high school, even though I was told I’d never talk.  I was accepted into an amazing college, though I was told that would be an impossibility.  I continued to dream, despite those who were quietly whispering, “You can’t.” Always, though, my heart went back to one thing– wanting to be a mother.

Then an amazing thing happened.  Some might call it miraculous.  Right there, in the middle of my everyday life, I met my husband.  We met in an online chatroom and during the first several weeks of us talking, I was upfront and honest.  “I have cerebral palsy,” I said.  His response? “So what?” It was then that I knew, this was the man God had chosen for me.  On a snowy February day, two years after we’d first met, we got married.

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A month before our second anniversary, we were blessed with a beautiful baby boy.  I’d gone through a normal, healthy pregnancy.  I was elated.  My thoughts rushed back, not for the first time, to the little girl who longed for a family of her own. I was wrapped in a perfect bubble of happiness, knowing no one could burst it. But people tried.  They questioned how I would care for a baby on a daily basis.  What would happen when my son grew older and began to walk?  What if he ran away from me and into a dangerous situation?  What would I do?  How would I cope?

 But do you want to know the truth?  While everyone else was busy worrying, I was busy loving. I reveled in the sweet smell of my baby boy– the fact that I could make him laugh so easily, that I could make him happy and that I was his mommy.  I chose not to live in a world of “what ifs.” Instead, I savored the moments that I knew would pass all too quickly. I focused on what I could do as a parent, instead of the little things that I needed help with.  I could change his diapers, give him baths, feed him and snuggle him.  But most importantly, I wrapped my son in the certain knowledge that I was his mommy, and that was enough for both of us.

That was five years ago.  Since then, we’ve added a gorgeous baby girl to our family.  Neither one of my children have ever questioned why I’m in a wheelchair. This is their normal, and that’s OK.  But when the difficult days and voices creep in, once again whispering, “You can’t,” the sweet laughter of my children reminds me that I did.

 

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Kleimola is from Grand Rapids, MI and currently lives in Ypsilanti, MI with her family. She will compete at the Ms. Wheelchair America 2015 competition in Long Beach, California on August 4 – 10, 2014. Feel free to follow her on Facebook!

 

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. 

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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.

 

 

Time to Swim! UCP’s Interview with Dr. Deborah E. Thorpe

by O’Ryan Case, UCP’s Manager of Public Education Programs

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Debbie Thorpe, PT, PhD
Associate Professor
The University of North Carolina at Chapel Hill

 

 

 

Summer is underway! A short while ago, we talked about the importance of inclusive summer camps and, this month, we are highlighting the many benefits that swimming brings to individuals with a range of disabilities (well, all individuals to be exact!). 

I recently had the pleasure of speaking with Dr. Deborah E. Thorpe, a physical therapist who who is an Associate Professor at The University of North Carolina at Chapel Hill. Dr. Thorpe led Project ACT NOW (Adults with Cerebral Palsy Training to Increase Overall Wellness), which investigated the effects of aquatic exercise on fitness and participation of adults with cerebral palsy (CP). See below to check out the interview!

Interview with Dr. Deborah E. Thorpe (DT):


Thanks so much for speaking with me and sharing your expertise around aquatic exercise with our UCP audience! I’ll begin with the workout that swimming brings. I have spastic diplegic CP and, whenever, I swim, it really feels like a complete workout. Can you tell me a little more about why this is and why I feel this way?

DT: It’s because aquatic exercise is a whole-body workout. When you exercise in the water, you’re moving against resistance the entire time– and this is a lot more resistance than what is felt on land. Water applies variable resistance, so the slower you move through water, the less resistance you experience against your movements. Conversely, the faster you move through water, the more resistance you experience. When you push ten pounds worth of force through water, you’re getting ten pounds pushed against you. Every muscle group can be exercised against resistance much easier in the water than on land. Also, for individuals with muscle weakness and limited range of motion, different movements, such as abduction, can be very difficult on land. But in the water, properties like buoyancy (the upward force of the water pushing against the object that is being submerged) make these movements much easier.


You’re right. I’m able to do much more with my legs when I’m in water than when I’m on land. Can you explain water’s buoyancy a bit more?
 

DT: Water’s buoyancy affects the amount of weight bearing on your legs. When you’re in waist-deep water, your legs are only having to support 50% of your body weight. In chest-deep water, your legs are only having to support 25% of your body weight. In neck-deep water, your legs are only supporting 10% of your body weight. Moving in water is so much easier for individuals with neuromuscular challenges, such as CP. If individuals have a hard time standing, I’ll put them in chest-deep water and they can stand and many times walk with their feet flat on the bottom of the pool. Once they get stronger, we’ll move to waist-deep and then knee-level water. Then, before you know it, they’re in mid-calf water.

 

So in addition to making the movements much easier, what other kinds of benefits come with swimming and other aquatic exercises?

DT: Well, it’s a safer environment in which to try more risky movements. I can’t get all of the kids I work with to jump off a step when they’re on land. But if I ask them to jump while they’re in the water, they feel safer and safety isn’t much of an issue. I can get people to jump up and down, or stand on one leg without losing their balance, which may be very difficult on land. If they fall in the water, they will not get injured. 

I mentioned it brings a total-body workout and helps with increasing range of motion in most muscles. In chest-deep water, the hydrostatic pressure produced by the water pushes against and gives a quick stretch to your diaphragm. It works the muscles in your chest– kids with CP tend to take short breaths, which is why some have softer voices, as they’re not filling their lungs all the way up with air and have trouble pushing air out of their lungs. When water is pushing against your diaphragm and providing resistance, by breathing you’re building up its strength and increasing the ability for the lungs to expand more and, ultimately, you can take in more air; it can definitely help with breathing.

Additionally, this hydrostatic pressure pushes on organs, such as the bladder and bowels and helps these organs to better perform. What do we all do after a half hour or so of aquatic exercise? Go to the bathroom!

 

Wow, that’s a lot! Do these benefits tend to last? 

DT: Anecdotally, adults with CP and parents of children with CP have told me that they’ve seen these types of benefits last for up to 24 – 48 hours.

The hydrostatic pressure produced in the water is a natural pump. Being in water is almost like wrapping an ace bandage around your calf moderately tight. The pressure of the water pushes lactic acid (which you build up while exercising and is what makes your muscles sore) out of the muscles at a faster rate than when doing land-based exercises.

 

So just to confirm, would you say these benefits apply to individuals of all ages and with all types of disabilities?

DT: Absolutely. I’ve worked in the water with babies, as well as individuals in their 70s. And I’ve worked with individuals with CP, Down syndrome, spina bifida and more. There is no one who can’t go in the water. For someone who has a tracheostomy, more precautions need to be addressed, such as making sure water doesn’t get into the trach.  If someone has a seizure disorder, you have to make sure the seizures are controlled and monitor him or her closely.

Let me tell you about one woman with whom I have worked with in the water. She has spastic quadriplegic CP and has used a power wheelchair since she was a child. She basically has only limited movement in her hands out of water– but in neck-deep water, I have seen her running!

 

That is incredible. Another thing about swimming that I’d point out is that it’s something people of all abilities can enjoy– it’s fun! Can you talk a little bit about that? 

DT: It also brings so many psychological benefits. I put all kids, no matter what their ability level is, in the water together. It’s amazing to watch them play basketball in the pool. Water “levels the playing field” and they all have a lot of fun. So in addition to the physiological and safety advantages, there are psychological ones involved as well.

Take kids who want to play t-ball. We play in the water! With the water resisting their movements and them having to fight the currents that are created in a pool from people moving around, the core is being strengthened. So you not only get stronger, but your balance improves.

 

What kind of timetable do you see with these types of results? 

DT: Everyone is different, so it all depends on the person and their abilities. But I’ll give you an example. I worked with a twenty-one year old man with spastic diplegic CP, who was an assistant head coach for his college’s baseball team. He told me he was always tired and that he wanted to gain strength so that he could do fun things after class and baseball events (just like every other college student). His upper body was very strong but his legs were very weak and atrophied. He came into my program and we worked for 45 minutes, three days per week for ten weeks. At the end of those ten weeks, I measured his function– he gained 200% in strength in both of his legs! Also, he was able to walk around the living room for the first time without using his forearm crutches! 

I also did a study with adults, where we worked three times per week for twelve weeks. Results indicated a trend toward improving their bone-mineral density. I can’t say this was directly a result of  aquatic exercise but they were definitely increasing their strength. The ones who walked were walking further and faster– and the water seemed to be the catalyst. Unfortunately, at a six-month follow-up assessment, a majority of their assessment measures were back to their baseline. Only a few had joined a facility where they could exercise in the water.  When they were in the study, they were provided with a pool membership for the course of the study and had camaraderie during their exercise sessions and tons of support. When the study ended, those supports went away.

 

I can say that having a chance to interact and train with other individuals who have disabilities would be fun and bring a sense of comfort. It’s certainly different when I may be the only person in the water or at a gym with a disability.

DT: I understand. I’ve been researching these types of barriers. Cost is a major barrier– a pool or gym membership that costs $35 per month is tough. Transportation is a barrier. And feeling like no one at a pool or gym knows what you can and cannot do is another barrier to exercise. Let me point out that there are personal trainers out there who are American College of Sports Medicine (ACSM)- certified in working with individuals with chronic disabilities. These trainers will likely have at least some familiarity working with individuals with disabilities– so that would be something for individuals and families to consider is to check with exercise facilities to see if any of their staff has this certification.

 

All of this information is helpful. What would you tell an individual with a disability or a family member who wants to know ways to become involved with aquatic exercise  or aquatic therapy?

DT: First, I’d suggest getting a physical therapy evaluation. Get a prescription for an aquatic therapy evaluation from your primary care provider. The physical therapist will evaluate the individual on land and tell them the areas needing improvement (i.e. strengthening, flexibility, cardiorespiratory conditioning, etc). Insurance should pay for the physical therapy evaluation. After this evaluation, the therapist will then take the individual in the water and develop an aquatic exercise/therapy program for them. Note that aquatic exercise and aquatic therapy are different. You have to have a doctors prescription to get aquatic therapy but, with aquatic exercise, you can go to any pool and exercise in the water. Also, a  good resource to check out is the National Center on Health, Physical Activity and Disability (NCHPAD). There are a lot of exercise videos on its website.

 

So, as we wrap up, do you have any other closing remarks that you would like to share? 

DT: To the parents and caregivers that UCP serves, I would say get your children comfortable in the water. Parents can get very apprehensive about putting their children in the water– but consider enrolling them in swimming lessons. Remember, there are safe flotation devices out there. I would also suggest finding a physical or occupational therapist who does aquatic therapy and can do an evaluation and come up with an individualized program. Finally, remember that a big factor with swimming is its social aspect. Kids can become bored with physical therapy but aquatic exercise and swimming can happen anywhere– like we said earlier, it’s fun! I’m a huge proponent in getting involved in community-based physical activity. I want individuals of all abilities to go out and participate with their peers.

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It was such a pleasure learning more about the types of physiological, psychological and other benefits that come with aquatic exercise. Dr. Thorpe was also kind enough to share this video of someone she has worked with. 

 

If you would like to learn more about aquatic therapy, you can contact Dr. Thorpe at dthorpe@med.unc.edu or me at ocase@ucp.org.

 

 

Teen Gets a Yes to Prom! UCP’s Interview with Allan and Morgan Assel

by O’Ryan Case, UCP’s Manager of Public Education Programs

I recently had the pleasure of speaking with Allan Assel and his daughter, Morgan, whose recent story which included professional quarterback, Robert Griffin III (RGIII), was shared all over the country. Morgan, whose close friend and classmate, Juwaan Espinal, happens to have cerebral palsy (CP), used social media to come up with a fool-proof plan of making sure she was the lucky one who Juwaan would accompany at their Centreville High School prom in Virginia. When Morgan,joined by United States Olympic Fencer, Nzingha Prescod and Juwaan’s favorite football player, RGIII, asked Juwaan to prom, he quickly accepted. See below to check out the interview with Allan and Morgan! 

Interview with Allan Assel (AA) and Morgan Assel (MA):

 

Thank you both so much for taking the time to share your story with our UCP audience! First, we all want to know– how did prom go?

MA: Prom was awesome! Juwaan really likes to dance, so we danced a lot and ate some really good food. We had a lot of fun and it was an amazing time.

 

That sounds like a great time! Were you tired from all of that dancing?

MA: Oh yes, we were definitely tired the next day.


So, as part of our work here at UCP, we work to ensure that everyone of all abilities can live their lives without limits. Your story was shared all around the country. However, it wasn’t the fact of Juwaan going to prom that caught our attention, but rather the great lengths you went to in order to make your ask so special. Can you talk about what it was that made you go these great lengths?

MA: Juwaan absolutely deserved all of it. He goes through a lot but always remains positive. It   wasn’t difficult for me to want to find a way to help make the day so special. If anyone deserved it, it was Juwaan. And if there’s anyone I’d want to go to prom with, it was definitely Juwaan.

 

 

It sounds like throughout all of your planning, your thinking wasn’t centered around whether or not Juwaan could go to prom, but instead around how to make the ask so special that he would tell you yes.

MA: Yeah, he’s pretty popular so I had to make sure I was the one he would take to prom. I didn’t want anyone else to beat me to him!


Allan, what were your thoughts when you heard of Morgan’s plan and what did you think would happen?

AA: The very first thought was that I was impressed with her reverse social-engineering skills! I was impressed by how she contacted a U.S. Olympic Fencer, Nzinga Prescott, who helped her get in touch with RGIII. Initially, she organized an event at the school to help add to all of the excitement. But it kind of fell through and she had to work with the school and other officials to make everything happen. We were all very proud of her.

 

Morgan, when did you decide you were going to try to make this happen?

MA: I’ve known all year that I wanted to ask Juwaan to prom. But I came up with my plan around the end of April.

 

 

So you’ve known Juwaan for a little while. Can you tell us a little about your friendship?

MA: We’re juniors now and we met during our freshman year at gym class. We text a lot, chat on social media and do all kinds of things like bowling and going to our school’s football games. We just went to Chipotle for his birthday!

 

Have you ever known anyone else with a disability? What would say Juwaan has taught you about CP and other disabilities?

MA: I’ve known other individuals with disabilities but no one else who has CP. I’ve learned that he’s just like me and all of our other classmates. People may assume he’s different but he likes to go to the same places, do the same things and has the same sense of humor as everyone else. He’s not “special needs,” he’s a special guy.


And he likes to go to Chipotle, just like almost everyone else!

MA: Exactly!


I’ll open this up to both of you. What would you say are your biggest takeaways from all of this?

MA: Mine is to be kind to people. A lot of people have been messaging me on social media and telling me that I’m a good person but it doesn’t take much to be kind and a friend to someone. It shouldn’t be as big of a deal as it was but instead, it should be a common place where we include everyone and be kind to one another.

 

AA: Outside of seeing him at the football games, I didn’t really know Juwaan before all of this. I knew he was a part of the football team and figured he was cool. But the coolest thing was when I had the chance to meet and see him interact with everyone. You can almost feel the love. I was happy he took my daughter to prom; although I did tell him to not keep her out too late!

 

Another thing that impressed me was the amount of love that he and his family share. After we took pictures right before prom, it took almost twenty minutes to get Juwaan and his wheelchair into the car. I was amazed at how long it took and how much work he and his family go through to transfer in and out of a vehicle.

 

With so much going on and your story spreading everywhere, what would you like to see come out of all of this?

MA: I would love it if people would include everyone of all abilities more throughout life. In high school, it can be difficult to open up your eyes and see that everyone around you goes through similar challenges, but I would love it if everyone would spend more time with and include one another.

AA: The thing that I took away from everything is, again, getting to know Juwaan and his family. After prom, I learned that Juwaan’s mother has been trying to buy an accessible van. Juwaan hasn’t gone to the mall or grocery store in a long time because getting in and out of his family car takes a lot of extra work. This story is good on so many different layers and prom will be a phenomenal memory, but I’d like to see it touch the quality of life for Juwaan and his family. I’ve pitched in to his mother’s GoFundMe site, which can be found by searching online for “van for Juwaan.”

 

One last question, Morgan. You’re a junior and may have set the bar just a little high this year for when it comes to asking someone to prom. Will you fill us in on any ideas you may have for next year?

MA: I honestly have no idea. I don’t really know how this can be topped so I’ll have to think about it for a while!

 

You really went above and beyond– not just with your ask to prom but for opening your eyes to get to know others around you. Thank you both again for taking the time out to speak with UCP and we look forward to sharing this and some of your photos with our audience!

MA: Sounds great!

AA: Awesome! We look forward to it!

 

 

It was great to chat with Allan and Morgan Assel. If you have any questions or would like to learn more about this story, you can contact me at ocase@ucp.org or Allan (@aja4304) or Morgan (@morganassel) on Twitter. You can find UCP (@UCPnational) on Twitter as well!

 

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.

 

 

 

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.

UCP ANNOUNCES UNIVERSITY OF VIRGINIA AS WINNER OF WORLD CP DAY INVENTION CONTEST

FOR IMMEDIATE RELEASE

CONTACT:
Kaelan Richards: 202-973-7175, krichards@ucp.org

 

UCP ANNOUNCES UNIVERSITY OF VIRGINIA AS WINNER OF WORLD CP DAY INVENTION CONTEST 

Team designs solar-powered wheelchair, awarded 1st prize of $20,000

Donates chair to man who submitted idea, funds to help advance World CP Day

Washington, D.C. (May 10, 2013) – United Cerebral Palsy (UCP) and its international partners have announced the winner of the first annual World CP Day invention contest: a team from the University of Virginia, who created a solar-powered wheelchair.

World CP Day was established in 2012 as a way to raise awareness and support for people living with cerebral palsy around the world. Through the “Change My World In One Minute” contest, people can submit ideas for something that would make a real difference in the lives of people with cerebral palsy—and an incredible 473 ideas were submitted. From these, three final ideas were selected: a fold-up motorized wheelchair, a documentary on cerebral palsy in the 21st century and a solar-powered wheelchair. The public was then invited to submit proposals for a chance to win $25,000 and to bring their ideas to life.

The team from the University of Virginia, led by Dr. Mool Gupta, included six students: Dennis Waldron, Duncan McGillivray, Craig Ungaro, Ankit Shah, Maria Michael and Kyung Kim, and was primarily constructed at the National Institute of Aerospace’s Research and Innovation Laboratories Facility. The concept for the wheelchair was inspired by the design of retractable roofs on convertible cars and utilizes lightweight yet robust materials with high efficiency solar cells. This innovative combination enables the wheelchair to increase its range by more than 40 percent over battery usage, and to run a one mile per hour indefinitely without consuming any battery charge. Operated by a single switch, the wheelchair includes standard components as well as USB power outlets. 

Awarded $20,000 for their first prize invention, Dr. Gupta and his students decided to use the prize money to refine and ship the wheelchair to the man who posted the suggestion online, Alper Sirvan, who has cerebral palsy, and donate the remaining proceeds back to UCP to help advance World CP Day in the years to come. 

“UCP is thrilled to present this award to the University of Virginia for their creation of a solar powered wheelchair as part of the first World Cerebral Palsy Day’s Change My Life in One Minute invention contest, which focused on concrete, attainable ideas that could change people’s lives. We are very proud to say that, together with the incredible efforts of the University of Virginia, Dr. Gupta, and all of the students and partners involved, one of these ideas has been brought to life,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “And it is truly inspiring to hear of the University of Virginia’s decision to use the prize money to send the wheelchair to the man who inspired the idea and return the remaining funds. I applaud these extraordinary individuals for their work, and appreciate their efforts in helping to ensure that people living with cerebral palsy can live their lives to the fullest.”

“This team of graduate and undergraduate students have created a device that will truly benefit those with disabilities,” Engineering School Dean James H. Aylor said. “The students on the team are excellent examples of the type of engineer we strive to produce in the U.Va. Engineering School – innovative leaders who are agents of change in society. I am thankful for the World CP Day organization for giving them this opportunity and for the National Institute of Aerospace for providing laboratory space.”

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About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

About the World CP Day Campaign:
World Cerebral Palsy Day is an innovative way for 17 million people with CP to tell the world what they need to make their lives better and it’s a way to turn some of those ideas into reality. World CP Day was piloted in 2012. From 1 August, people with cerebral palsy, their families and friends posted ideas online for something that could be created, developed or modified that would change the world for someone with cerebral palsy. Ideas were posted as text or video. Each idea needed to take only 1 minute to read or watch. From World CP Day, September 4, people were encouraged to go online, review the ideas and vote for the concepts that could have the greatest impact on people’s lives. At the end of September, the World Cerebral Palsy Day Panel reviewed the ideas and public votes. Three ideas were shortlisted for development. Social activists, researchers, inventors, and innovators were then invited to turn the shortlisted ideas into reality. They competed for a total prize pool of $25,000. The winner was announced on April 27, 013.

World CP Day partners include organizations from America, Australia, Austria, Azerbaijan, Bangladesh, Bulgaria, Canada, China, Croatia, Finland, Germany, India, Indonesia, Ireland, Netherlands, New Zealand, Niger, Panama, Poland, Portugal, Scotland, Singapore, Slovenia, Sri Lanka, South Africa, St Lucia, Sweden, Turkey and the UK.

Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy

The American Academy of Pediatrics released a new clinical report, “Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy”.

The report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children such as diagnosis, planning for interventions, authorizing treatments, and follow-up, and optimizing health and well-being for children with cerebral palsy and their families.

ACTOR RJ MITTE BECOMES NEWEST UCP CELEBRITY AMBASSADOR

Actor RJ Mitte Becomes Newest United Cerebral Palsy Celebrity Ambassador

Emmy-nominated AMC drama “Breaking Bad” Actor Commits to Educate, Advocate Life Without Limits for People with Disabilities

Washington, DC (March 25, 2011) – Today, designated “National Cerebral Palsy Awareness Day” by the U.S. Senate (Resolution No. 75), United Cerebral Palsy (UCP), a leading service provider and advocate for children and adults with a spectrum of disabilities, announced its newest Celebrity Ambassador, Actor RJ Mitte, who stars on the Emmy-nominated AMC drama "Breaking Bad."

As an UCP Celebrity Ambassador, Mitte is committed to help fulfill UCP’s mission to advance the independence, productivity and full citizenship of people with a spectrum of disabilities, supporting UCP’s network of nearly 100 affiliates who provide services and support to more than 176,000 children and adults every day — one person at a time, one family at a time. Mitte will begin his new role by participating in UCP’s 2011 Annual Conference in New Orleans, La. next month, including hosting the Opening Reception, participating in a panel about mobilizing the next generation of philanthropists and advocates, and being featured as a presenter at UCP’s annual Awards for Excellence dinner.

“I am excited to join the United Cerebral Palsy family and am committed to help educate and advocate for people with disabilities to live a life without limits,” said Mitte. “There are so many opportunities for advancing independence and productivity for people with disabilities, and I’m eager to raise awareness to advance UCP’s mission.”

“We are pleased to name RJ as a Celebrity Ambassador of United Cerebral Palsy. UCP believes that all people should be able to live a life without limits. As a young person with a disability, RJ has proven that having a disability cannot and should not hold anyone back,” said Stephen Bennett, United Cerebral Palsy President & Chief Executive Officer. “The civil rights movement is not over, and RJ’s notoriety and voice will help us continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams today and into the future.”

Mitte’s character on “Breaking Bad,” Walter White Jr., has cerebral palsy. In real life Mitte also has cerebral palsy although it is a milder form than his character on the show. In addition to this new position with UCP, he is involved with several organizations that raise awareness of equality and diversity, and the prevention of bullying. He has been a featured guest speaker at an anti-bullying town hall discussion at the NAPT Annual Conference for school transportation professionals and has begun working with PACER’s National Center for Bullying Prevention on a national campaign designed to engage and educate those who see bullying – leveraging peer-to-peer support. As a guest speaker at high schools, colleges, and universities around the country, Mitte openly talks about the ways he has overcome obstacles and how he has achieved his goals.


About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP and its nearly 100 affiliates advance the independence, productivity and full citizenship of people with a spectrum of disabilities by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time. We work to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, we continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams for the next 60 years, and beyond. For more information, please visit www.ucp.org

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CONTACT:
Lauren Cozzi, United Cerebral Palsy
202-973-7114 (direct); LCozzi@ucp.org