Accomplished Cross-Sector Leader Named UCP Chair

Effective October 1, United Cerebral Palsy’s Board of Trustees welcomed new members and several new officers to help lead the national nonprofit organization for people with disabilities and their families. UCP has more than 80 affiliates in the U.S. and internationally.

Gloria Johnson-Cusack

Gloria Johnson-Cusack was elected as chair after more than a decade supporting the UCP network, and brings to  the national board more than 20 years of deep, cross sector experience. Currently, she serves as Ex

ecutive Director of Leadership 18, an alliance of Chief Executive Officers (CEOs) responsible for leading some of the country’s largest and most well respected charities, non-profits and faith-based organizations. Member organizations serve over 87 million people annually and represent $59 billion in total revenue. She also is a board member of the Firelight Foundation which supports children and families affected by HIV/AIDS in Africa.

Previously, Johnson-Cusack served as a Senior Vice President at GMMB, a D.C.-based strategic communications and advertising firm focused on cause marketing. In this role, she advanced issues on behalf of key nonprofit organizations and foundations. In the public affairs arena, Johnson-Cusack served as Director of the Office of Congressional Relations at the Peace Corps, Special Assistant to the President in the White House Office of National Service, and Director of Constituent Relations at the Corporation for National Service. She was Chief of Staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr. 

In 2005, Gloria led the strategic and creative team responsible for developing UCP’s “Life Without Limits” brand identity to enhance the international positioning of the organization. She also worked with UCP leaders to develop the strategic vision and plan for National Big Sky Visioning Sessions and related outreach to explore ways communities can work together to integrate people with disabilities fully into the fabric of society. Most recently, she helped lead the strategic planning committee which advised about the future direction and business model for the national office and conducted related outreach to affiliate CEOs and their board members to invite input.

Her expertise will add to the talents and strengths brought by new Vice-Chair Eric Hespenheide, who retired with more than 25 years of financial experience as a senior partner Deloitte & Touche, LLP and new Secretary Pamela Talkin who is the first woman to serve as Marshal of the Supreme Court of the U.S. overseeing the security and operations of the Supreme Court building. They join Melvin “Chip” Hurley who has over 30 years of healthcare and management experience in accounting, auditing and consulting. Each officer was serving as a trustee before being elected.

“I am thrilled to take on this new role leading one of the most outstanding boards I have ever encountered. They are passionate and laser-beam focused on smart strategy. Each of us will draw from our strong, diverse perspectives to advance the vital work of the UCP network that helps so many people world-wide.”

“UCP is incredibly excited to see Ms. Johnson-Cusack take this key position on our board,” said UCP President and CEO Stephen Bennett. “Her knowledge of the UCP network, her insight into how nonprofits can and should work and, most important, her vision will be critical to continuing the strategic changes which began under Woody Connette’s leadership. 

New members of the Board include Seth Harris, Pablo Chavez and Ouida Spencer as trustees. For more information about the board including biographies for all members, visit www.ucp.org/about/board

Help UCP Win $25,000!

Thanks for visiting our page. You can help United Cerebral Palsy win up to $25,000 for people with disabilities and their families by visiting MetLife on Facebook and liking, commenting on and sharing one of the posts featuring UCP.

MetLife Center for Special Needs PlanningThe MetLife Foundation and MetLife Center for Special Needs Planning has generously offered to give UCP $2 for every like on that post as part of the #MetLifeCares campaign for disability employment awareness.

All you have to do is take action and a donation will go to support the advocacy work UCP does at the national level as well as valuable programs such as My Child without Limits and UCP’s Life Labs.

Thank you for your help! 

Young, Queer and Crippled: We’ve Got Spirit Too

Andrew Morrison GurzaTo commemorate Spirit Day, the following is a guest post from a noted blogger and disability advocate who is also gay and a person with a disability. Andrew Morrison-Gurza is a Disability Awareness Consultant with an MA of Legal Studies specializing in Persons with Disabilities. Andrew also has the experience of living as a person with a disability. He understands that the concept of disability is one that many individuals are very new to, and they may not feel comfortable to discuss it. Through his work, Andrew aims to give everyone the opportunity and most importantly, the permission to start the conversation by discussing his day to day lived experience and making disability accessible to everyone. About the terminology he uses in his post, he notes “Cripple is a term that I have reclaimed as one of empowerment. It is not the politically correct terminology for Persons with Disabilities, but it is how I self-identify.”

 

By Andrew Morrison Gurza

I was sitting in my 11th grade math class, and there he was: an absolutely stunning spectacle of man (or, at least what my 16 year old brain considered to be “man” at the time).   Everything inside me told me to go talk with him, my palms were sweaty, his smile made me melt to the floor—it was now or never.  I had just come out of the closet, and based on all the TV and movies I had seen, now that I had admitted my sexuality, my quest for a long term partner would be that much easier.

As I pushed the joystick on my 300-lbs. wheelchair towards him, I began to realize that it wouldn’t be that easy, and all of these thoughts about how I was ‘too disabled’ began to flood my brain. I never did tell my high school crush how I felt about him, but the feelings of uncertainty and fear with respect to my disability lingered. The more and more I got messaging from the media reminding me that “it was okay to be gay,” I would also wonder in the back of my mind, “yes. But is it okay to be gay and disabled?”

Spirit Day is a brilliant initiative designed to combat bullying and homophobia against LGBTQ+ youth. With this in place, Queer youth are told that they matter, and that they have a voice in our ever changing queer-scape. I think that Spirit Day also allows for us to remember the queer voices that we don’t often hear about. For me, that is the queer cripple.

It is important to remember that they exist too, but they may be navigating their queerness in entirely different ways: with Personal Care Assistants who help them with everyday activities many people take for granted, struggling with feeling different amongst the different, and having very few role models who embrace both their disability and their sexuality openly.

Imagine feeling burdensome to everyone because everywhere you look, you are not at all represented. Imagine worrying that you might not get your basic needs met if you come out, and imagine worrying that you might never be loved – all because you sit rather than stand.

It is in our youth where changes in the LGBTQ+ experience will truly come, and so it is our young LGBTQ+ community who must be introduced to the Queer Cripple. We must teach them that it is okay to have questions about disability, and it is okay to be a little bit scared of what they don’t understand.  We must show them now, that all bodies have value, so that by the time they start accessing their sexuality in real-time, the good looking guy in a wheelchair will be someone they will approach as they would anyone else – perhaps with questions and queries, but without fear and fakery.

Spirit Day can also ensure that we celebrate disability in the Queer community. By actively discussing disability (and all that comes with it) on Spirit Day, we can show young Queers with Disabilities that there is indeed a place for them, and they will be a part of this bright rainbow that we all are trying to shine under.

Thank you for reading! If you want to find out more about the work I do as a Disability Awareness Consultant, or find out how I can “make disability accessible” to you through blogging, presenting or speaking, please head over to www.andrewmorrisongurza.com

 

 

“Who I Am” PSA Spotlights Disability Employment

This week, the U.S. Department of Labor’s Office of Disability Employment launched a new public service announcement as part of their annual Campaign for Disability Employment (October is National Disability Employment Awareness Month). The PSA debuted at a special White House event on October 14 and will be distributed to television stations nationwide in November.
United Cerebral Palsy is proud to be a partner in the campaign and our Celebrity Ambassador, actor R. J. Mitte makes an appearance in the spot. The PSAs are being distributed in English and Spanish and are available through the campaign’s website as well as You Tube and Vimeo. UCP will be sharing a short version of the PSA online using the hashtag #WhoIAmPSA.

Take a moment to read a message about the PSA from Kathy Martinez, Assistant Secretary of the Office of Disability Employment Policy, U.S. Department of Labor below:
“When we look at someone, do we see all of who they are?

This is the question the PSA “Who I Am” was created to address. “Who I Am” features nine people with disabilities who, with the notable exception of R.J. Mitte (featured in television’s “Breaking Bad”), are not actors. Not defined solely by their disability, each of these individuals is the sum of their many life roles—which includes working in jobs they love.

Given that nearly one in five Americans has a disability–many of which are not apparent–nearly all of us will be affected by disability at some point in our lifetime. Anyone may acquire a disability through accident, injury or aging and many people have a parent, spouse, relative, neighbor or friend with a disability. This inspiring PSA will resonate, particularly with those who may have a hidden disability or know family or friends who do.

“Who I Am” reminds us to see one another for who we are and what we can contribute. Employers and others watching the PSA will recognize the value of the diverse attributes, skills and talents that people with disabilities can bring to the workplace. The PSA will empower those with disabilities–especially those with non-apparent disabilities—to bring their whole selves to everything they do—including their work. “Who I Am” is the third in a series of PSAs from The Campaign for Disability Employment (CDE), a collaborative effort of the U.S. Department of Labor’s Office of Disability Employment Policy and leading business and disability organizations promoting employment opportunities for people with disabilities.

We are grateful that so many stations aired the CDE’s previous PSAs, “I Can” and “Because,” which achieved top ratings. Both helped demonstrate the value people with disabilities bring to the workplace. We hope you will do what you “can do” to help us continue spreading this important message by sharing this PSA.”

Sincerely,

Kathy Martinez

Assistant Secretary

Office of Disability Employment Policy

U.S. Department of Labor

www.whatcanyoudocampaign.org.

Brothers Looking to Help a Friend Found Florida 5K Run/Walk

K Twins and Friend

Konstantinov twins with friends

In 6th grade twin brothers Adrian and Martin Konstantinov met Ben Juliano, a classmate with cerebral palsy. After hanging out for a couple of years and becoming good friends, the brothers asked Ben’s father if there was anything they might be able to participate in to benefit CP research or treatment to help people like their friend Ben. After a little digging by the boys and both families, they could not find anything local that would accomplish their goal. It only took a little bit of thought to hit on the idea of starting their own 5K run for CP.

They connected with United Cerebral Palsy of Central Florida and the Cerebral Palsy International Research Foundation, which supported their idea and enthusiasm from the start. The first race of what would become an annual event raised $7,500, with the boy personally organizing and securing sponsors. The boys learned how to make presentations to potential community sponsors and worked with UCP and CPIRF on how to determine how the money raised would be spent – an important key for gaining sponsor cooperation. They very quickly gained experience in public relations, giving TV and radio interviews and helping to raise the profile of the event.

Now in it’s 3rd year, the Lake Scary 5K Run/Walk will take place just before Halloween on October 25 in Lake Mary, Florida at the Lake Mary Preparatory School. It’s on track to be just as successful as the first two events in raising money for cerebral palsy. However, this year, the boys won’t be there with UCP to cheer on their friends, neighbors and classmates.

Martin Konstantinov

Martin Konstantinov

Adrian and Martin’s family just moved to the Washington, D.C. area. Their first order of business after settling in was to contact UCP’s national headquarters in D.C. to try to find some way to stay involved in the cause. While they plan to become businessmen as adults, they are hoping to continue working with UCP as interns or possibly planning a new event in D.C. to replicate their success in Florida.

“While we have not been as involved with the planning due to our move, other families in the community have taken the reins and are currently working hard to make this year great!” said Martin.

Even though they are now far away from their friend Ben who inspired their efforts, the brothers experience with the event and UCP of Central Florida keeps them motivated to do more.Being Honored in 2013

“The best moment from any of the events or work with UCP was seeing the wonderful playground cover that was purchased and installed in one of the UCP of Central Florida campuses with money from the 5K,” they said. “Many of the kids have sun sensitivity and the cover provides much needed shade from the Florida sun. Also, the school purchased Kindles for use in the classrooms and the children really enjoy using them. All of this would not have been possible without the support of the community who participated in or donated to the 5K and in turn became more aware of what cerebral palsy was. We knew that we had made a difference in these kid’s lives.” 

In the long run, the brothers hope that people will become more aware of CP and strive to help find treatment options.

“It is our goal that the event is viewed as an example for people on how they can make a difference in the lives of people with CP in their communities,” they said.

Why Is the UCP Logo Purple?

Spirit DayIn honor of National Bullying Prevention Month and out of respect for the people with disabilities and their families who we serve who are also lesbian, gay, bisexual and transgender (LGBT), UCP will turn its logo purple for Spirit Day this October 16.

Millions of people in America have pledged to go purple on Spirit Day in a stand against bullying and to show their support for LGBT youth. Observed annually since 2010, individuals, schools, organizations, corporations, and public figures wear purple, which symbolizes ‘spirit’ on the rainbow flag. Find out more at www.gladd.org/spiritday.

There’s Nothing Typical about Tosh

Special thanks to United Cerebral Palsy of Orange County for sharing the story of Tosh and his family. UCP affiliates work on the front lines to help 178,000 families like Tosh’s every day. Your support of UCP goes a long way toward making an impact on communities like Orange County and others throughout the country. Tosh_Choc_3-19-12

Tosh’s birth was far from typical. He was delivered stillborn by emergency C-section after an amniotic fluid embolism took his mother’s life. Miraculously, doctors were able to resuscitate him, but little Tosh spent the first three weeks of his life in the NICU faced with a variety of health issues related to his traumatic birth, including a very high risk of cerebral palsy.

When Tosh was released from the hospital, his father Jody was referred to United Cerebral Palsy of Orange County immediately for early intervention therapy. Tosh received weekly therapy sessions at UCP-OC for a year and a half which focused on strengthening his body to sit, crawl, stand and eventually walk. Progress was slow at first, but through the dedication of his therapist and Jody’s Toshcommitment to his progress, Tosh recently “graduated” from the therapy program. He is now considered developmentally typical – walking, talking and functioning like this toddler peers do.

“Without UCP-OC, I have no doubt Tosh would have significant developmental delays today,” said Josh’s father Jody. “I am grateful every day for the care and treatment UCP-OC provided to our family.”

UCP affiliates like UCP-OC and dozens of others across the country and as far away as Canada and Australia provide top-quality care for children like Tosh. But they prove to be invaluable resources for parents like Jody as well. No husband and expectant father expects to mourn the death of his wife on the same day he celebrates the birth of his son. Add to that the challenges Tosh overcame for his own survival and you can understand what a difficult experience Jody faced. Jody says that “throughout the entire process, I always knew UCP-OC was my partner in caring for Tosh. UCP-OC was a home to use, and the staff a part of our family.”

Cadyn-Tosh-Jody

 

 

#HalloweenWithoutLimits Costume Contest for Kids with Disabilities

Superman Costume

Via Best Special Needs Costumes

United Cerebral Palsy (UCP) will host a social media contest this October to find the most inventive, creative and limitless costume for children (or adults) with disabilities. Halloween is all about the costumes, but for many children with disabilities it can be difficult to find an off-the-rack costume which will accommodate their assistive technology – such as wheelchairs, crutches and braces. Also, some children with disabilities, including autism and Down syndrome can have sensory processing issues that require a bit more creativity in choosing a costume that doesn’t irritate or upset. That’s why UCP is celebrating those children and parents who have made the extra effort to create incredible custom costumes so that every child has the opportunity to experience a #HalloweenWithoutLimits.

Kicking off October 6, UCP will be calling for photo submissions on our Facebook page and Twitter (@UCPNational) account until Thursday, October 30 at midnight EST. Submitters should post on our wall using the #HalloweenWithoutLimits hashtag. Feel free to tell us a little bit about who the costume was created for and why. Anyone can enter, multiple entries are allowed and costumes can be new or from previous Halloweens. However, they must have been created for or worn by a person with a disability – child or adult.

Throughout the month, we’ll encourage our 23,000+ fans and followers to vote for the most creative costume by “liking,” “commenting” on, “sharing,” “favoriting” and “retweeting” their favorite photos. Halloween Friday, October 31, we’ll announce the fan favorites – the top five online vote getters. Those winners will be featured in UCP’s next Full Spectrum e-newsletter on November 3. Also, in that issue of Full Spectrum, UCP will announce our staff pick for most creative costume. That winner will be invited to tell the story of their costume (and their family) in an upcoming guest post on the Voices of UCP blog and receive candy gift packages compliments of Hershey’s.

For some inspiration, check out UCP’s My Child Without Limits website for an article on Halloween costume ideas for the physically-challenged.

 

Hershey's, The Hershey Company

 

Who Cares About Ken Jennings? A Teachable Moment

Yesterday, former Jeopardy champion and aspiring TV host, Ken Jennings made a highly offensive comment on Twitter. Many of his 177,000+ followers reacted with harsh criticism and several media outlets soon picked up on the storm, reporting on his comment and the ensuing furor online.Ken Jennings Screenshot

So who really cares about Ken Jennings or what he said. He is, after all, a self-described “fixture of yesteryear.” We could jump on the bandwagon and bash Ken for being none-too-bright when it comes to sharing your private thoughts on such a public forum, especially if you’re trying to build a fan base to launch another 15 minutes of fame. We could point out all that is wrong with this statement, but that’s hardly necessary. Those 41 characters pretty much say everything you need to know (as does the fact that almost 23 hours hence, after plenty of criticism, he has not attempted to remove the post.)

But for organizations like UCP, which have spent the better part of 65 years advocating to give people with disabilities the opportunities they need to fully participate in their communities and in our society, this is a teachable moment.

The lesson here is that for all of our progress – greater accessibility to public places, innovations in technology to make day-to-day life easier, reducing discrimination in education, housing and the workplace, more and better public services and support – we really haven’t accomplished much if people with disabilities are still regarded as “less than” people without disabilities.

It is that attitude that is so evident in Mr. Jenning’s post. He’s telling the world that using a wheelchair somehow diminishes what he would consider an otherwise attractive person.

That is sad. But it’s not sad for us. It’s only sad for Mr. Jennings and others like him who have not yet understood that disability doesn’t mean diminished. If we can use this unfortunate moment to make people stop and think for a moment – and possibly check their own attitudes – then we have a truly teachable moment. Maybe Mr. Jennings has given us a gift and offered us some knowledge about the prejudices that still lurk under the surface.

I’ll take “Enlightenment” for $1000, Alex.

New Film Features Comedian with Cerebral Palsy

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

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

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

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

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