Voices of UCP is a blog maintained by UCP National staff and features information you can use, personal stories and much more. Interested in writing a guest post? Submit it via the Share Your Story submission page and your story could be featured here!
Regarding all guest posts: the views expressed herein are solely those of the author and do not reflect the views or positions of United Cerebral Palsy.
UCP made a trip to Edison, New Jersey for the New York Metro Abilities Expo a couple weeks ago. The Abilities Expo brings together vendors, organizations and disability-centered initiatives for three days for those to explore the latest and greatest in all things disability related. Staff from UCP National visited the Expo on May 2nd and 3rd, networking with several organizations and fellow Expo-goers.
UCP Staff with the crew from the [dis]ABLED InsideOut collaborative.
Some of the highlights from the Expo included: The Panthera X, a carbon-frame chair that weighs only nine pounds with the wheels attached, with the frame itself only weighing four pounds. Other cool and notable technology included Smart Drive, which allows a manual wheelchair user to be able to steer their chair by just tapping on the wheels.
The UCP Staff hadopportunity to be apart of the large-scale and collaborative art project [dis]ABLED InsideOut, which is being lead by French actress and activist Leopoldine Huyghues-Despointes and artist JR. The goal of the project is to help bring awareness to disability, as well as to play a role in helping to challenge stereotypes that those with disabilities often face. The staff members who participated in the project were all born with Cerebral Palsy and were honored to be apart of the [dis]ABLED movement.
Some of the assistive devices on display at the Expo.
The biggest highlight of the Expo was, without a doubt, getting to meet and connect with so many wonderful and like-minded people with disabilities. There was great camaraderie and conversation. It’s an amazing thing to see such a strong amount of activism in one space.
If you have a chance, go check out the Abilities Expo when it comes to your city!
On May 4, 2015, members of the staff at UCP National were invited to the New York City screening of the film “Margarita, With A Straw” at the Paris Theatre as part of the New York Indian Film Festival. The film centers around a young woman named Lila, a college student with Cerebral Palsy who is studying music. The film explores her desire to be loved and accepted for who she really is, while trying to navigate the world in her power chair. In the beginning of the movie, you see Lila in the mists of trying to win the affection of her band’s lead singer, Nima. After Nima rejects her advances, Lila learns that she has been admitted into New York University.
UCP and CPIRF staff with lead actress, Kalki Koechlin (Lila).
Lila suddenly goes from her small college in New Delhi to the big streets of NYC. On her first week in the city, Lila happens upon a protest. During the protest, police begin to tear gas the crowd; this is where Lila meets Khanum. Lila and Khanum quickly begin a whirl-wind romance and are soon living together. Lila begins to come to grips with her sexuality, knowing that she will soon have to come out to her closest family member and her caretaker: her mother. Through a series of revelations, Lila’s family and relationship are turned upside down. Lila soon learns that she doesn’t need to seek validation from others, but in herself.
UCP with the film’s director, Shonali Bose.
After the movie, the film’s director, Shonali Bose, and its stars Kalki Koechlin (Lila) and Sayani Gupta (Khanum) talked about how they got into character and prepared for their roles. UCP had the opportunity to meet both Koechlin and Bose, take photos and discuss their thoughts and feelings on the film. For some of the staff at UCP National, three of which were born with Cerebral Palsy, this film was the first time they had really seen a portrayal that echoed parts of their own experiences on screen.
What sets “Margarita, With A Straw” apart from other films about Cerebral Palsy or disability, is the way you see Lila: She is not an underdog or a source of inspiration. She is just living her life, while trying to find her place in the world. As a viewer with or without a disability, you can identify with parts of Lila’s journey. This film gives viewers a look into the struggles that some face with a disability, because in the end, we all want to be loved and accepted for who we are.
Emily Gillis is set to graduate for Suffolk University Law School in Boston this coming Saturday. Emily’s law school journey has been different from most of her peers, her father, Joseph Gillis Jr., has taken her to every single class throughout her three years as a law student. Gillis was born with spastic-quadriplegic Cerebral Palsy and uses a power chair to get around.
Joseph Gillis would drive his daughter to her stop on MBTA’s Red Line everyday, often waiting patiently for hours between Emily’s classes, pick her up from the stop and drive them back to the apartment they shared together in Whitman, Massachusetts. He would often accompany Emily to her classes, helping to set up and break down her computer and would wait for her between classes, making sure she had everything she needed. When Emily was denied an aide for both school and at home, her father jumped at the chance to help his daughter succeed, already knowing how to navigate Boston, it was a perfect fit. “There are no words to describe what my dad has done for me.”, Emily says.
Emily Gillis and her father, Joseph Gillis, Jr.
This incredible moment is about her hard work, her dedication and the support of her dad. When asked why he went to such great lengths, Joseph Gillis replied: “I think every parent would have done the same thing if they had the chance- “I’m just glad I had the opportunity to do so.” Emily graduated from the University of Maryland with a degree in Criminology in 2010; she has known she wanted to become a lawyer since her freshman year of high school. Those at Suffolk Law took notice of her father’s unwavering support, Associate Dean of students, Ann McGonigle Santos said “…He has given Emily a gift to thrive and lay the foundation for her to become an attorney in whatever field she pursues.” On Saturday, she will have a full cheering section, including her mother, Mary, who’s been battling cancer for the last few years and her younger sister, Kimberly.
For both Emily and Joseph, this is the end to what Emily calls a “bittersweet” journey and a future full of great experiences that await her.
From all of us here at UCP: Congratulations, Emily! And best of luck with whatever path you choose to follow!
Special Thank you to Tony Ferullo from Suffolk University’s Office of Public Affairs, CBS Boston and the Boston Globe for helping to contribute to this blog post.
United Cerebral Palsy (UCP) kicks off its annual Steptember Challengeregistration period today with the announcement that Martin and Adrian Konstantinov will be our official Steptember Ambassadors in 2015. Following in the footsteps of past ambassadors such as Team Hoyt, the 15-year-old twin brothers are committed to raising awareness and funds to help people with disabilities and their families through United Cerebral Palsy.
Steptember is a four-week event designed to generate support for people with cerebral palsy and other disabilities. Beginning on September 2, teams from around the world will challenge themselves to take 10,000 steps a day and fundraise along the way until September 29, 2015. Nearly any activity, including biking, physical therapy and yoga, can be converted into steps on the Steptember website.
In 2012, the Konstantinov brothers co-founded the successful Lake Scary 5K in their hometown of Lake Mary, FL to benefit one of UCP’s local affiliate organizations on behalf of a friend with cerebral palsy. Now that their family has relocated to Washington, D.C., the brothers plan to put their energy and enthusiasm into helping UCP’s national efforts to rally teams participating in this year’s Steptember event. Last year, over 10,000 people participated in the challenge and raised more than $3 million globally through more than 170 organizations involved in the effort.
“We want to continue to spread awareness about cerebral palsy and contribute to this cause that we already feel closely attached to,” said the Konstantinovs.
The twins will be working with their Director of School Activities at the Maret School in DC to engage fellow students in the Steptember Challenge and will be on hand to help UCP promote the event. Not only do the funds raised during September directly benefit people with disabilities served by 80 UCP affiliates in the US and beyond, the steps taken directly benefit the participants as well in leading a more active lifestyle.
“We are beyond impressed with the efforts of these young men’” said Stephen Bennett, President and CEO of UCP. “They are an excellent example of the idea that a world of good can come from the intention to make the world a better place for just one person. Through their desire to help their schoolmate, they are benefiting thousands on people with disabilities.”
Kids, start your engines! Cleveland Clinic Children’s and UCP of Greater Cleveland will kick-off Northeast Ohio’s first Go Baby Go workshop, Saturday, May 16 at UCP of Greater Cleveland.
National Interstate Insurance will supply equipment to engineer 25 ride-on toy cars designed to put local youngsters with disabilities on the fast track to mobility. Skilled craftsmen will customize cars to the unique personality of each youngster before families count down for the tykes to take the wheel during a special a “drive time” race. Backed by support of more than 100 skilled craftsmen and families, Go Baby Go Cleveland is the largest volunteer event in the organization’s history.
Go Baby Go was created in 2006 by Dr. Cole Galloway – who will attend the event. He is the associate chair of the University of Delaware’s Department of Physical Therapy. The program was created to give children with spina bifida, cerebral palsy, Down syndrome and other mobility disabilities a chance to socialize, move around more easily and keep up with their siblings and peers.
Studies show that the power of independent mobility supports the development of strong cognitive, social, motor, and language skills in young children.
Go Baby Go Cleveland is presented in partnership with Cleveland Clinic Children’s, Cleveland State University, Health Aid of Ohio, Miller’s, National Seating & Mobility, National Interstate Insurance, Permobil, Replay for Kids, and UCP of Greater Cleveland.
More About Cleveland Clinic Children’s
Cleveland Clinic Children’s is a part of the Cleveland Clinic health system and offers full medical, surgical and rehabilitative care for infants, children and adolescents. Cleveland Clinic Children’s supports 126 acute care beds at Cleveland Clinic’s main campus and 284 pediatric beds system wide; in addition, pediatric services are available at 43 Clinic sites in Northeast Ohio. A staff of more than 300 full-time pediatricians and sub-specialists see 800,000 pediatric visits each year and provide hospital care for 18,000 children per year. Cleveland Clinic Children’s is a non-profit, multi-specialty academic medical center integrating clinical care, research and education. Cleveland Clinic Children’s consistently ranks among the “Best Children’s Hospitals” by U.S.News & World Report. Visit us online at www.clevelandclinic.org/childrens and on Facebook at www.facebook.com/clevelandclinicchildrens.
More About UCP of Greater Cleveland
The mission of UCP of Greater Cleveland is to empower children and adults with disabilities to advance their independence, productivity and inclusion in the community. The not-for-profit organization serves 1,100 children and adults with disabilities from Northeast Ohio and maintains a staff of over 170 employees offering comprehensive Children’s Services and Adult Services. With low administrative costs, 92 cents of every contributed dollar goes directly to the programs and services offered to children and adults. The headquarters of UCP of Greater Cleveland – the Iris S. and Bert L. Wolstein Center – are located at 10011 Euclid Avenue, Cleveland, 44106. The agency has two other locations in Westlake and Highland Hills, as well as two group homes and various vocational sites throughout Greater Cleveland. Please visitwww.ucpcleveland.org.
The following post from Microsoft Chicago’s director and community advocate Shelley Stern Grach first appeared on www.microsoft-chicago.com on April 23. United Cerebral Palsy’s Life Labs initiative is hosting it’s first Innovation Lab at Microsoft‘s Technology Center in Chicago May 19-20. Find out more about the event and how you can be a part of this intense two-day design challenge at www.ucpinnovationlab.org.
I wasn’t until a few months ago, when I received a call from United Cerebral Palsy. They were interested in hosting a hackathon for 100 people in May, and were looking for space to hold the hackathon. Fortunately, the Microsoft Technology & Innovation Center is ADA-compliant, and we are now thrilled to be hosting this wonderful program on May 19-20, when developers will be creating apps to help people with disabilities. At about the same time, I received a call from Chicago Public Schools to see if we could host a job shadow day for CPS students with disabilities. Those two calls sparked my interest, and I also started to pay more attention to ADA 25 and to how meaningful technology can be to those who have a disability. To recognize and celebrate the important strides for people with disabilities, 2015 will be celebrating ADA 25 all year long and Chicago will be celebrating ADA 25 Chicago. This blog is the first in a series recognizing ADA 25 and its impact.
Our mission and social responsibility at Microsoft is to enable people throughout the world to realize their full potential with technology. To that end, we invested in creating an environment that capitalizes on the diversity of our people, and the inclusion of ideas and solutions, that meets the needs of our increasingly global and diverse customer base.
And that means developing technology that is accessible to anyone – regardless of age or ability. Technology has the potential to become our sixth sense.
People with disabilities are among the most marginalized groups in the world. People with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities.
Microsoft has a long history and commitment to accessibility. For more than 25 years, Microsoft has focused on creating technologies that make devices easier to use for individuals with a wide array of difficulties and impairments. Microsoft has listened, gained insights, and applied what it’s learned. The result is an increasing momentum toward the goal of making devices accessible and useful to all people. Today we empower hundreds of millions of people of all abilities around the world to use technology to enter the workforce, stay connected with friends and family, get things done and take full advantage of a digital lifestyle. We’ll spend more time in May looking at how apps can positively impact the lives of people with disabilities.
Today, I want to share with you how impressed I am with the teachers and students at CPS who visited us last week.
Let’s start with CPS teachers like James Taylor. First, you just have to love his name! But more importantly, James spends his time focusing on all the students with disabilities at CPS, and one small part of his day is putting together field trips for the students to businesses, so the students can experience the corporate world. Originally, James thought we would have 2 or 3 students sign up. We had 27! Everyone arrived early and we began our day with a wonderful presentation by Paul Edlund, Chief Technology Officer – Microsoft Midwest, about the future of technology. It was a highly interactive session, with lots of questions and student engagement.
We then had a full tour of the Microsoft Technology & Innovation Center, led by Beth Malloy, Director, Microsoft Technology Center – Chicago and Bradley Trovillion, Technical Solutions Architect. The students examined our Internet of Things Fishtank, played Xbox and used the Kinect to understand motion capture of movement and worked real time on our PPI.
After lunch, we had a terrific presentation via Skype by Patrick Maher, Director of Civic Engagement, SPR Consulting. SPR is a Microsoft Partner and Pat suffered a spinal cord injury during college. In addition to his very motivational personal story, Pat emphasized the great opportunities for careers in technology for people with disabilities. Pat runs a meet up group called ITKAN, which supports people with disabilities in the Technology field.
He also showed an amazing video which I highly recommend:
The entire staff of the Microsoft Technology and Innovation Center were honored to support these wonderful teachers and students at CPS. It’s most rewarding when we received the following thank you note from James, which told us that our message hit home and that we have helped to fill the pipeline of students who are interested in careers in technology:
“Pat and Shelley I want to say thank for participating and hosting the students. Overall the students enjoyed the experience and I’m hoping to get a few involved with ITKAN in the next few months. A majority of the students are gearing up to graduate and after this job shadow day, some are being swayed over to the computer field. Pat I want to say thank again for sharing your experience with us, and giving motivation to the students. And again, thank you and the rest of the team for being great hosts. Hopefully we can do this again later this year or next year and open some doors for upcoming graduates. I will share these videos and get some feedback, hopefully this will generate some questions for opportunities and get the students more involved with the IT world.”
UCP would like to congratulate our 2015 Awards for Excellence winners! Thank you for your hard work and dedication you show to our affiliates organizations and people with disabilities and their families in your communities. These amazing programs and people will be honored at UCP’s Annual Conference in Chicago May 20-22.
The 2015 Award Winners:
Nina Eaton Program of the Year
Life Without Limits Clinic (nominated by UCP of Greater Birmingham)
This award is given to a program or service of a UCP affiliate that has made an extraordinary contribution to the quality of life of people with disabilities, enabling individuals served to become more independent, productive, or integrated into the family or community.
Ethel Hausman Volunteer of the Year
Dr. Eva Ritvo (nominated by UCP of South Florida)
This award is given to a volunteer who has made an outstanding contribution to a UCP affiliate and to the quality of life of people with disabilities.
Daniel Lopez and Lake Periman (nominated by UCP of Central Florida)
This award honors youth who have significantly enhanced the lives of people with disabilities through care giving, volunteerism, advocacy, innovation or fundraising.
Life Without Limits
O’Ryan Case (nominated by UCP National Staff)
This award goes to an individual with disabilities who has demonstrated leadership and achievement of such caliber as to be a significant role model to individuals with and without disabilities.
In addition to these awards, UCP will be honoring 100 outstanding volunteers at the Annual Conference, which we call our Victory 100. UCP believes in the strength of its volunteer network and values volunteers as the working core of the UCP family. The organization was founded through the efforts of volunteers, and we continue to build on that strength. The UCP Victory 100 Awards recognize the dedicated volunteers who have given 100 or more hours of support to UCP through our affiliates across the country.
What do YOU know about UCP? We’re a network of affiliated nonprofit organizations working to ensure a Life without Limits™ for both children and adults with a broad range of disabilities and their families.
Tell Us More About The UCP Network.
UCP’s approximately nearly 80 affiliated organizations range from large providers like Gillette Children’s Specialty Healthcare in Minnesota, to smaller but no less impactful organizations from New England to California. Our affiliates’ influence can be felt as far away as Canada and Australia.
Each organization acts independently to provide the advocacy, support and services needed in their communities. Many have programs in place to address direct needs for therapy, housing, transportation, employment and family support. Many spend time advocating for public policy changes at the local, state and even national level. Many work to raise awareness of the issues facing people with disabilities and their families, and all work to secure the necessary resources to carry out UCP’s mission.
Who, Exactly, Do You Serve?
UCP is proud to serve people with a range of disabilities, their families, and by extension their communities. Sometimes, you will hear that 65% of the people served by UCP affiliates have disabilities in addition to, or other than, cerebral palsy. While percentages vary by affiliate and can change over the years, the truth is that UCP places a priority on serving people in need, regardless of diagnosis. UCP providers typically serve people with the most severe and multiple disabilities.
At the national level, UCP advocates for change in public policy. And, we work to raise awareness of the major issues common to many people with disabilities: access, resources, support and respect. At the local level, UCP affiliates work hard to provide the supports and services most needed in their communities. Their capacity to serve is only bound by the resources they have available.
If You Serve People with All Disabilities, Why Are You Called United Cerebral Palsy?
We are proud of our heritage. United Cerebral Palsy’s name has a long history, going back to 1949. In the 1940s, there were not many options for families of and people with cerebral palsy and other disabilities. What began as the brainstorm of a few parents of children with cerebral palsy quickly grew in to a nationwide crusade to improve the lives of people with all disabilities. From it’s inception, UCP brought issues about cerebral palsy and other developmental disabilities to the forefront of the national media.
While the words “United Cerebral Palsy” do not fully express the scope of our work, UCP has served as a trusted name for millions of people for more than 60 years. As with many iconic brands, which have grown and evolved over time, the true heart of our identity lies in the associations people make when they hear our name, not in the name itself.
Why Don’t You Just Focus on Cerebral Palsy?
Because more than 176,000 people rely on UCP every day. If we can advocate for a public policy that provides access to more affordable housing options for with disabilities, should we apply that policy only to people with CP? If we can encourage respect for all people, should we only try to put an end to bullying against children with CP? If we can inspire an innovator to design a device that is more accessible, should we insist that only people with CP be able to use it? United Cerebral Palsy works hard to help individuals overcome barriers to a Life Without Limits™, and we have found that sometimes the biggest barriers of all are the ones that come with assigning labels and defining limits.
The Strider Championship Series from Strider Bikes is designed to give children of all abilities aged two to five the chance to be apart of the thrill of racing bicycles. This year’s series consists of four national races, beginning April 25 in Bradenton, FL.
Strider makes bikes for children as young as 18 months and children with special needs. The bikes don’t have training wheels, and are designed to help children of all abilities to focus on balance and leaning to help them learn how to ride.
Almost 700 disability advocates gathered at The Renaissance Hotel in downtown Washington, D.C.April 13-15 for the annual Disability Policy Seminar. Co-hosted each year by UCP, The Arc, SABE, AAIDD, AUCD and NACDD, this event brings together advocates, policy experts and people with disabilities and their families on Capitol Hill to discuss current policy issues important to people with intellectual and developmental disabilities and to advocate for top priority policies by going directly to their representatives in Congress.