First Comes Love, Then Comes Marriage…

We recently received a couple of videos here at UCP’s national office that shared a similar theme – the joy of wedding celebrations!

Scott and Kim Sussman’s video commemorating their courtship and wedding caught our eye because it exemplifies what it means to live a life without limits. Scott was born a type of cerebral palsy called spastic diplegia. It is among the most common kind of CP and it affects his lower extremities. We really loved the video of Scott and his new wife Kim because his disability is only referred to once and never again! Even when Scott mentioned it, he didn’t refer to it by name. It is simply a part of who he is which Kim loves and accepts along with other traits. We thought Kim’s reaction upon hearing about Scott’s CP was the absolute perfect way to handle what could have been an awkward dating situation, and she managed to also make it adorable.

Here’s to Scott and Kim! Enjoy their wedding video!

 

This next video really tugged at the collective heartstrings. Korey has spastic quadriplegia. He uses a wheelchair and has issues communicating via speech. So when his brother Kyle got married, Korey wrote his “best man’s speech” to his brother Kyle, but Kyle had to be the one to read it. We like this video because it shows that you can still live a life without limits with enthusiasm and humor even if you need a little help. This video is a shining example of the unique bond of siblings. We think Korey and Kyle are outstanding young men and wish Kyle all the best in his marriage. We also wonder what Kyle can possibly do to top Korey’s speech when Korey gets married and it’s Kyle’s turn to be best man!

 

New Superhero with CP Catches Stan Lee’s Attention

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

An artist’s representation of Ammon

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

What inspired you to create “Ammon?” 

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

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

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

 Is Ammon somewhat semi-autobiographical?

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

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

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

Tell us more about your dad. 

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

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

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

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

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

Who is narrating “Ammon’s” story? 

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

How is the project going so far?

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

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

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

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

Stan Lee

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

What’s next for you?

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

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

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

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

 

 

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

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

Thorpe- Headshot- 2012

 

 

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.

– 

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.

 

 

5 brettapproved™ travel tips

Guest blog post by Brett Heising
                                   brettapproved.com

Originally appeared as a blog post on brettapproved’s website on April 11, 2014.

 brett

 
When you start a travel and entertainment website for people with disabilities, it stands to reason that you, well, enjoy traveling. That’s certainly the case with me. But why? Because life is defined by experiences and there’s nothing better than exploring someplace new.

With this spirit of adventure in mind, I thought I’d share my top 5 travel tips:

 

5. Get to the airport early. This gives me time to explain to every airline employee I encounter that my wheelchair is much more than a piece of luggage — it’s an extension of me. Doing so makes me feel better. It also gives airline employees an opportunity to examine life from my perspective.

Arriving early also means I won’t be pressed for time going through security. The “male assist” also known as the “male PA” is a bit awkward for all parties involved. I always remind myself that this particular security protocol isn’t the highlight of the TSA agent’s day either.

I mean really, who wakes up and says: “I can’t wait to slap on a pair of disposable rubber gloves and feel sensitive areas of a stranger’s body with the back of my hand! Today’s gonna be awesome!” I’ll tell ya who … NOBODY.

 

4. No airline or hotel employee wants to make a mistake. People aren’t perfect. Mistakes are inevitable. When mistakes happen, I try my best to keep cool and work with them (whoever  “them” may be) to resolve issues as cordially as possible. While erupting might feel better in the short-term, it solves nothing.

Now, lest you think I’m perfect, I’ve had plenty of frustrating experiences. I find venting to someone you love after the fact (thank you Claudia!) is extremely helpful. Note: If Claudia’s not available a couple drinks from the hotel bar work wonders!

Sidebar: If something happens to your chair/mobility device and you’re in a bind, give my friends at scootaround.com a call. I met some Scootaround team members recently and they exemplify the organization’s “can-do” culture. I haven’t needed the company’s services yet, but I love having a back-up plan.

 

3. There’s no substitute for more time. When I’m traveling on business, arriving to my hotel a day early, before a conference starts, and getting the lay of the land has proven invaluable time and again. If there’s a mix-up with my room I have time to solve it. If I’m meeting clients off-site for dinner, I have time for some restaurant reconnaissance. What can I say? I’m a belt & suspenders kind of guy.

 

2. Take time to explore. Even the busiest business traveler needs to eat. Hence, when afforded the opportunity: Eat local! Explore local! Celebrate local! I LOVE Chipotle and Starbucks as much as anybody, I really, honestly do, but when in Rome …

And now (drumroll please) with out further ado …

 

1. Attitude is everything. I constantly remind myself and the young adults I’m privileged to mentor that we have absolutely zero control regarding how other people treat us. However, we have completecontrol over how we treat and react to them. If someone isn’t giving me the respect I deserve for example, I won’t take the bait because I want the individual I’m speaking with to know that what they may lack in civility, I more than make up for by way of my own self-respect.

 

So there you have it, five travel tips from brettapproved. Earth shattering? Nope. Worth remembering? Absolutely! If you have any travel tips or advice you’d like to share with our readers email me at brett@brettapproved.com and above all, travel confidently my friends.

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

Email Tile vs 3

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

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

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

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

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

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

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

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

 Team Hoyt

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

 

 

 

These Guys Should Be in the World Cup

 

By: Shirene Menon, Guest Blogger

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

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

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

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

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

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

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

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

 

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

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

The Tottering See-Saw of “Empathy Exercises”

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

D'Arcee Neal

D’Arcee Neal

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

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

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

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

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

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

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

Camp Inclusion — Its Importance to Kids with and without Disabilities

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

As a kid, it seemed everyone I knew had great stories and memories about summer camp. I remember seeing television shows and movies, such as Salute Your Shorts and Heavyweights that highlighted the friendships, activities and adventures that come with summer camps. It’s no surprise that, just as it seemed for everyone else, I couldn’t wait to go to camp. Fortunately, I did go one year– to some camp in Virginia after my third-grade year. I loved it. As I expected and hoped, I made new friends, found adventures and spent many a night with my fellow campers scheming to pull the ultimate prank on our camp leaders. But I’ve realized that, if the camp had more kids with disabilities there, it would have made a much bigger impact on my life. 

Camp University of Montana

(Photo Credit: University of Montana Wilderness Institute)

I have cerebral palsy and remember being the only camper there with a (visible) disability. While everyone at camp was super nice and I always felt included, it would have been great to have seen and interacted with other kids who were “similar” to me. There’s a social aspect to having a disability that, unsurprisingly, only those with disabilities can relate to. No matter how kind the world is (and trust me, that means a lot), it means so much to connect with others who, at least somewhat, can relate to my daily experiences and see life through a lens similar to mine. As I think back to the rides, races, water games and other various activities that I loved at camp, I know I would have enjoyed them even more if I was around more kids of all abilities. I am fortunate to now have this type of interaction on a daily basis– professionally here at UCP and personally through social media and events– but experiencing this at such a younger age would have meant so much more.

One of our UCP affiliates, UCP of Delaware, has been running inclusive camps since the 1990s. A few weeks ago, they held a seminar on camp inclusion that I had the pleasure of attending. It was open to families of individuals with and without disabilities, as well as other local agencies and camps. Inclusion, of course, was highlighted and attendees discussed the perceived barriers to operating inclusive camps. While these barriers were addressed and it was powerful (as always) to hear experiences and stories from others, it was nice to learn more about the impact inclusive camps have on those without disabilities. As I and others with disabilities talked about the impacts inclusion has had and continues to have on our lives, many stories about kids without disabilities and how they enjoy interacting with peers with disabilities were shared. Camp directors and family members talked about times when kids would flock to their peers using wheelchairs to get to know them and children with disabilities and their siblings would enjoy their time away from home with one another. It is an exposure that is so impactful at a younger age– and one that teaches patience and an understanding of how everyone has different challenges.


Below outlines some of the major takeaways from UCP of Delaware’s event:


Families and caregivers of children with disabilities:

  • Want their children to be and feel included

  • Want their children to enjoy friendships

  • Like inclusion because siblings can be together

  • Like inclusion because it gives camp that “family” feel

 

Former campers with disabilities explained that camp helped with:

  • Gaining lifelong friends

  • Challenging one’s self

  • Expressing one’s self

  • Building self-esteem

  • Getting out of the house!

 

Some tips to help make camp activities more inclusive:

  • Pair campers up– kids without disabilities can help explain directions and assist with physical activities for kids who may have difficulty doing them on their own;

  • Offer a wide range of activities so that can campers can pick the activities they feel most comfortable doing;

  • Communicate with the campers and their parents– what are their likes and dislikes?

  • Promote teamwork– delegate roles to each team member so that everyone feels included and important.

 

Free ways to become more inclusive:

  • Volunteers

  • College internship programs

  • Donations from local community service organizations

  • Finding adapted recreational equipment from other agencies

 

Getting the word out:

  • Word of mouth! The disability community is small but vocal

  • Letting local disability organizations know you are a resource

  • List yourself as “disability friendly” in annual summer camp lists

 

I thank Bill McCool, Executive Director, Lilia Melikechi, Research Intern and everyone else involved at UCP of Delaware for hosting and allowing me to attend this seminar. If you have any questions or would like to learn more about inclusive camps, please feel free to contact Lilia Melikechi at liliam@udel.edu or (302) 943-7214. Or you can contact UCP of Delaware at ucpde@ucpde.org or (302) 764-2400.

 

For information about a range of disabilities, please contact us at info@ucp.org or visit www.mychildwithoutlimits.org or www.bravekids.org!