UCP Seguin Volunteers Show Support for Vets at The Moving Wall

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

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

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

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

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

Dating with a Disability

By D’Arcee Neal

I’ve been reading a lot of blogs and articles related to disability and dating recently and they tend to present you with these epic checklists that most able-bodied people aren’t going to sift through, because much like two people on a first date, no one likes to play 20 questions. So I’m going to try to boil it down to what is essential, in my opinion.

 Last summer I was at dinner with a married couple who both used wheelchairs and I decided to ask them about relationships. I asked them very candidly if they found it difficult to be in relationships before they found each other. I was interested to see how different genders would answer that question. The husband replied almost immediately, “Oh I had no trouble at all. I had so many dates in college I had to tell them to go away.” When I turned to his wife, she took several seconds to answer.

“It was hard. Very hard,” she said. “I never really realized how difficult until I was graduating from college, but I guess men are different that way.”

Whether you’re a man or a woman with a disability does have an effect on your dating experience. Based on what I’ve seen and been told, women tend to put physicality lower on the scale of attractive traits when looking for a potential partner whereas men are much more attuned to what a woman’s body is like. It may not top the list of what they’re looking for, but for most guys, it’s a major factor

D'Arcee Neal

D’Arcee Neal

As a gay man I can only speak to the experiences that I have had, and certainly not for all people with disabilities, but I also think that the type of disability you have alters the perceptions of the people you’re attempting to woo. While some may argue that dating with any disability at all levels the playing field in regards to the degree of difficulty, I argue against that. I think we tend to believe that what we see is what we get, at least at first glance, and a visible, physical disability can put the brakes on a relationship before it even gets started.

In the world of online dating, when crafting a profile you are given the opportunity to present to the world the face of your choosing, and with less visible disabilities, it is your decision to withhold that information until a better time. This could be for better or for worse, depending on the severity of the disability. At first glance, people will immediately begin creating perceptions of what they think you are like. I do it. You do it. It’s what we do.

But I think this is the crux of what makes dating with a disability so difficult. I would like to believe that people are generally accepting of the majority of people with disabilities as far as friendships go, but once you move into the realm of more intimate, romantic intentions, that person is suddenly confronted with their own personal comfort level at having to include the person with the disability into their lives, from the routine issues like transportation, to the far more personal idea of sex. In the gay community, I believe that many people are not ready to handle the idea of something outside of the norm of what they already expect.

Take the ubiquitous statement “I enjoy long walks on the beach” as a measure of compatibility. People without disabilities may think, “Could we walk in the park? Maybe you like hiking or camping instead?” That’s still in the realm of compatible since those options are about sharing some sort of physical activity with one another. When dealing with wheelchair users, that idea is immediately fractured because rolling in sand (or up a mountainside) is a cumbersome and energy-sapping endeavor that leaves you looking sweaty and ridiculous. When first setting up an account or updating information, many people with disabilities (myself included) struggle with the idea of including that information. It’s nice to be honest and upfront with people, but come on, it’s also nice to be noticed and taken at least halfway seriously before you start in on what could potentially be the mood-killer.

So how then, to handle these pitfalls? I’m not going to say that I’m a guru of information and that what I suggest is a fix-all approach, but in my experience, there are some things that can make for better dating regardless of disability:

  • Decide how important your disability is to you before publishing information online. Don’t let others dictate how to see yourself. If to you, it’s a minor inconvenience, then treat it as such. It’s nobody’s business but yours until you choose.
  • Align yourself with people whom you have basic ideals in common with. If getting around is a hassle to you, trying to date someone who likes to audition for American Ninja every weekend probably isn’t going to work out well.  This seems like a basic thing to say, but for people with disabilities, the basics get even more basic when it comes to things like walking.
  • Know your comfort level. Sometimes a lunch can be just that. Sometimes it can be more, and if all your wanting is dessert (both metaphorically and actual) then make sure that information is made apparent.
  • Being single can be amazing, if you let it. You deserve the person that is ready for YOU, not the other way around. Most of the time people with disabilities can’t alter their circumstances anyway, so either let the person you want to date appreciate your uniqueness, or find someone that will. There’s nothing worse than being shoehorned into a situation and praying it will fit.
  • Last but not least, understand that not everyone is ready for your awesomeness. This is a very hard lesson and it’s one that I feel like people with disabilities get more than our fair share of heartache. Dating someone with a disability is the same as dating someone without one, with a few modifications and a lot of understanding. Some people are okay and ready to learn. Some aren’t and you can’t force someone into a place they’re not ready to go.

 Is dating people with disabilities harder? Yes, but only because the world is unaccustomed to it. The world is full of billions of individuals and each of them deserves to find their share of happiness. With body shaming, ableism, gender biases, homophobia and mass media reflecting so many idealized images these days, it’s a wonder anyone manages to find their significant other. But they do, and sometimes they have disabilities and life goes on. Sometimes they’re passed over for that prettier, thinner, able-bodied face. It’s up to you to own that knowledge and then to use it. You’re awesome, now let them know it. 

The Camp SMILE Spirit

 
by Megan Maher, UCP’s Special Events Coordinator
 
Special Meaning in Life’s Experience. That’s what Camp SMILE stands for, and strives to achieve. Hosted by UCP of Mobile, Camp SMILE is a residential summer camp for individuals with disabilities (ages 5-50) and their siblings. With adapted rules and specialized equipment, campers not only have the chance to participate in physical activities like kayaking, fishing, swimming, boating, and horseback riding; they also meet others whose abilities and life experiences are similar to their own.
 
Founded in 1972, Camp SMILE has grown exponentially – from originally serving 27 campers for four days in the summer to now serving over 300 campers across four five-day, four-night sessions and two seasonal respite weekends. The camp offers a unique one-to-one camper-to-counselor ratio, which helps campers adjust to life outside their normal routine and helps foster genuine relationships between campers and counselors.
 
My journey with UCP began as a Camp SMILE counselor in 2004. After spending five full summers at camp, I went to college and based my education off my camp experiences. I bounced from special education to psychology, worked at an autism center and on an autism research project, and fueled the search for my future career based upon the inspiration camp had instilled within me across my high school days. Now the Special Events Coordinator for UCP’s national office in Washington, D.C., I journeyed back to my camp family this summer to rediscover the Camp SMILE spirit, and learn what it truly means to everyone involved.
 
The Camp SMILE Spirit for Counselors
 
This was Emily Kendall’s 15th summer as a camper, but her counselor’s first. “We’re friends at school,” her counselor Emma Erwin explained. The pair are students at Baker High School, where Emily would frequently talk to Emma about camp and her summer experiences. “After my grandfather died,” Emma said, “Emily came to me and said: ‘Don’t be sad, because in heaven he’ll get to ride the zipline just like you can at Camp SMILE.’ I knew then I wanted to be a counselor, and waited every year until I was finally 16 and could sign up to volunteer.”
 
 
 
For Mallory Schum, the Camp SMILE spirit is about making her camper have the best week possible. “I like that camp makes us feel equal, like they aren’t the minority.” Schum states the experience is like working for any other summer camp, and then some. “I try to make sure my camper gets the most out of their week, but feel like I might get even more out of it myself.” Her favorite moment? Struggling for hours to get a wheelchair-bound camper up a waterslide, but then getting to see the look on her face when she slid down. Mallory sees the Camp SMILE spirit to be a beautiful thing, stating that: “As long as this place is around, it will continue to give counselors and campers alike a meaningful and life changing summer experience.”
 
A counselor for six years, Mallory intends to go into the field of nursing and continues to volunteer with UCP of Mobile throughout the year. Over a third of all volunteers follow suit by choosing college majors and future careers that relate back to their summer camp experiences.
 
The Camp SMILE Spirit for Campers
 
Waylon Rogers, a camper for virtually his entire life much like Emily, says that camp means “you always have to smile.” Waylon, known for his dance moves and remix to the “Mr. Sun” flagpole song’s chorus, values the friendships that camp has given him. After all, he says, “even when you have to leave, camp is about knowing you can come back next year.” And indeed the campers do come back. As Camp SMILE’s model separates by age, not disability, campers have the opportunity to grow up together and proceed through the different summer sessions as a group.
 
Marcus Williams (pictured here) has been coming to camp for “a long time” he tells me. For Marcus, camp is family. His favorite part of camp are his friends, a group that bring energy (and maybe a little bit of trouble) to the entire camp and are notorious for having the most rambunctious cabin of the week.
 
His message to someone who has never come to Camp SMILE before: “You have to come see it for yourself, cause you’re gonna love it.”
 
 
 
 
 
 
 
The Camp SMILE Spirit for the Community
 
This summer was Matrisza Alvarez’s 21st year at Camp SMILE. This camp journey has taken her from counselor to staff to UCP of Mobile employee, and now, Camp Director.
 
For Matrisza, the Camp SMILE spirit embodies more than just the summer camp experience – generating true community and family benefit. “We are the only residential camp in the greater Mobile area for all disabilities. Camp SMILE encompasses everyone – and means just as much to the families as it does to our campers. Through this program and our respite weekends we strive to provide a safe, loving, and fun environment so that parents can get a break themselves and feel confident that their child is being cared for.”
 
Camp SMILE is also sustained by a strong volunteer force – from teen counselors to dedicated staff who decide to spend their summers to continue building this program. “How many teenagers we have doing great work with us all summer is amazing,” says Alvarez. “Camp is not only a huge service to our campers, but provides a volunteer experience to hundreds of teenagers in the Mobile community each summer.”
 
 
To learn more about Camp SMILE, visit http://www.campsmilemobile.org or contact Camp Director, Matrisza Alvarez at malvarez@ucpmobile.org.

Thank You to Our Champions in Congress!

 

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

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

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

 

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!

 

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

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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.

– 

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.