What Does it Take to Live a Life Without Limits?

Here’s the personal story of Ula, who has challenges due to cerebral palsy as well as the normal ups and downs common to many people with and without disabilities. Her secret to living a life without limits? Taking care of herself and pursuing the things that make her happy, rather than focusing on other’s expectations. 

 

My name is Ula, I’m 34 years old and I have mild cerebral palsyUla Thepsouvanh

My mother was pregnant with me when she came to Canada from Laos. I was born with the umbilical cord wrapped around my neck and was pronounced dead for 5 minutes.

My parents, whom I love very much, kind of wrote me off. They thought that they would be stuck caring for me until one of us dies. They were fresh off the boat from Asia when my mother gave birth to me. So they had a lot on their plate just adjusting to life in Canada with my grandparents and my brother.

I have tremors all though my body and speech impediment for which I took speech and physical therapy. When I was a teenager I felt that I was “too cool for school” and quit therapy because it was boring. It was one of my regrets in life. I didn’t see the value of therapy until it was too late.

When I was 17 years old I wanted my driver’s license. It took me almost a year to convince my parents to teach me to drive and another few years before I decided to take my test. I failed my first time but passed the second time. I remember coming home and telling my parents I got my driver license, my parents and I started to cry. They were tears of joy and shock. It was one of my proudest moments. I did not think I was capable of getting my driver’s license because of my uncontrollable tremors. Surprisingly my tremors did not play a part in the way I drove.

I attended college for three years studying human services and Fetal Alcohol Spectrum Disorder (FASD) support work. I received assistance from an employment service for people with disabilities, which found me a job at the YMCA starting in a preschool summer day camp. I have been there for eleven years now working at a youth shelter as a counselor.

I was 26 when I met William, the love of my life, and we married three years later. We have travelled the world together. William is musician and a professional artist and no, he does not have a disability. When we were dating we bought a karaoke machine, which we used almost every day for six months. One day William told me: “Babe you’re a good singer and have a beautiful voice. All I can think is “okay no I don’t, did you forget that I have CP and a speech impediment?” After we got married we decided to take singing lessons together. Our voice coach, Cesar Aguilar, trained us in classical and in opera.Ula Photo 2

“Working with Ula was a wonderful rewarding experience. The lessons we had with her and her husband Will were always filled not only with singing but also with laughter and joy,” says my voice coach. “Ula always showed up to lessons with a great attitude and ready to have fun and learn new songs. Although sometimes overwhelmed by some of the songs or vocal and breathing exercises I gave her she always put her best foot forward and tried everything I asked. She was always aware of her speech impediment although it never interfered with her ability to sing.”

I asked my musician husband to teach me guitar and he suggested trying the ukulele because it’s small and only has four strings. I have been playing for four years now. I have always liked music and knew I had an aptitude for it. Someday in the near future I could see myself preforming live. I want to start a band with other women with disabilities.

For me, having CP means I am committed to self-care everyday. My life is structure; I wake up, do yoga, I go to the gym, play ukulele, and visit my grandparents. I do this everyday before going to work in the evening. I have to take care of myself physically and mentally. Taking care of myself gives me confidence and that confidence curbs my tremors.

I think there is always going to be a part of me that is bitter and jealous toward people that don’t have disability. I do have dark days. I think I don’t mind having cp. I think it helped shape who I am today; I like who I am. However I sometimes wish that people would just keep their thoughts and question to themselves. I don’t know how many times I get of accused of being drunk when I’m in public. There was one time I went to a grocery store. Three cashiers followed me out and tried to block me from getting in the car because they though I was intoxicated and threatened to call the police. I had to explain to them that I have disability. I was humiliated and angry I spent hours and hours crying. I get weird looks and I hear whispers – “why does she talk that way.”

But, it is hard to picture my life without CP. What kind of career path would I’ve had taken? What kind of a relationship would I have with my friends and family? Would I be in the popular crowd like my siblings? Cerebral palsy or not, everybody has limitations. These limitations are determined by the body and mind and not by other people. It’s up to me and you to test those limitations to the best of our abilities.

Hey Candidates, People with Disabilities Can Help Elect You…Or Not

How much do you know about the voting habits of people with disabilities and their families? Aren’t they mostly Democrat? Surely they don’t really get out to vote much and they can’t really impact the outcome of an election. They don’t really care about the big issues, just things that affect their disability services. Right?Voting

Wrong. United Cerebral Palsy partnered with the HSC Foundation, Youth Transition Collaborative and other leading disability nonprofits to dig into the profiles of Americans with disabilities and their families and to find out how much they participate in our electoral system and why they vote the way they do. The results may be surprising to some and should serve as a wake-up call to candidates who might disregard this large and important group of voters.

First and foremost, there are nearly 58 million Americans who fall under the Census Bureau’s classification of disabled, including people with chronic conditions. The Census Bureau estimates 69% are registered to vote, just a few percentage points shy of the general population. But while overall voter turnout among registered voters in the last Presidential election was only 57%, this group turned out to the tune of 72% – far higher than other demographic groups. And, 61% percent reported that they plan to vote this November. Add to that number immediate family members who may share their political opinions and what have you got?

Not only do they vote in high numbers, they are very passionate about their issues and engaged in the political process. Eighty-four percent say a candidate’s record on strengthening disability supports and services is important to them and they’re willing to reward candidates with good records at the ballot box (85%). They’re also very likely to penalize candidates who have poor records on disability issues – 87% said they would vote “against” a candidate they would otherwise support if that candidate voted for cuts to disability services and support. Younger people with disabilities (18-30) are somewhat more passionate and quicker to punish candidates for non-support.

However, in general, disability-specific issues did not top their list of issues they considered very important. Like the rest of America, the economy and healthcare ranked #1 & #2 on their list of priorities. Disability issues came in further down the list after education, national security, taxes and other topics frequently debated in politics.

Like the rest of America, people with disabilities are politically diverse with 30% Democrat, 25% Republican and 30% Independent. Those party affiliations come very close to the general population which is described as 31% Democrat, 26% Republican and 41% Independent.

Unfortunately, one in five people with disabilities said they faced a significant barrier in voting in the 2012 elections, citing such issues as transportation, confusing ballots and accessibility to voting places.

At the time of this survey, only 21% of this group approved of Congress’ efforts to improve the lives and conditions of people with disabilities. About 41% approved of President Obama’s efforts. And while only 12% said they felt like they were part of a true movement to change the status quo for people with disabilities, another 19% said they wanted to be. Couple with their passion for our political process, their massive numbers and high turnout, they could one day be a deciding factor in some races. The political world would do itself a tremendous favor by taking notice and courting the support of this important, but sometimes invisible, constituency.

Don’t forget to vote November 4! It can make a difference 

This 2014 survey was designed by maslansky + partners, a non-partisan polling and research firm based in New York, Washington, London, and Paris. It was conducted by Research Now, a well-established, U.S.-based non-partisan survey house. Please contact press@ucp.org for more information. 

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 boys 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.

 

Updated news coveragehttp://m.clickorlando.com/teens-help-organize-lake-scary-5k/29400384

 

Writer Follows His Passion in Unique Way

Michael Lerman, who has cerebral palsy, describes how and why he created “420 Flowers Behind XVI Bars” and “Flow of Illuminati,” two books of poetry and lyrics remarkable not only for their content but for the fact that both were written, prepared and designed without any type of writing utensil, keyboard or pointing device such as a computer mouse or touchpad. You can see Michael’s work and purchase his books at www.michaelslyric.com

By Michael Lerman

Flow of Iluminati

Flow of Illuminati

“For as long as I can remember myself, I was always fascinated with music. Having Cerebral Palsy since the age of five months, playing an instrument or singing wasn’t really an option. But, there was something else. I started to read when I was 4. There were plenty of children books and alphabet toys. Nobody remembers teaching me how to read. I don’t remember, either. It just kind of happened. I must have put it all together, somehow. I remember that I used to turn pages by using my face, my mouth and my nose. So, books became everyday companion. I was reading all the famous science fiction, fantasy, and of course, poetry writers. It was music and books that got me through my childhood, and it wasn’t always easy. Although, despite all of the limitations, I never considered myself to be disabled.  Different?  Yes, very different. But then, all of us are “different.” That is one of the greatest characteristics of physical existence.

My first book, “Michael’s Lyric” didn’t start as a book. It started as a desire to create music. The first lyrics in the book were the first ones I ever wrote. Many lyrics were turned into songs. Music is the inspiration. Only four years ago, if somebody would have told me that I would have a paperback, I would have never believed them. I Just do not have the patience to write a book.  It’s just that I gathered all these lyrics and I needed somewhere to put them. A digital book seemed like a good way to go. Then, the paperback was created, as a last minute idea, just 3 months before the end of 2011. I think that an artist cannot be happy if no one can witness their creations. I figured, if I will continue to put out books, I might live to hear my lyrics on American radio.

There are very few authors that use voice software for limited tasks. The general consensus is that it is almost impossible to write, edit, and design (interior/exterior) a book by using nothing but voice software. If that is so, then, this book is the impossible. Not only that, it is also published by using voice software. It takes a good amount of patience and focus to use voice to text. While I write, I listen to an instrumental music the entire time.  So, I have to keep on beat and rhyme, keep check on ideas/concepts, while dictating and catching any mistakes that the software might make, all at the same time.  I am not even going to go into describing what difficulties cerebral palsy adds on to the entire process  I don’t generally mention any of this, because I would rather people to concentrate on the writing instead of challenges and difficulties I might be facing.

I have contacted major magazines, newspapers, television stations, music /art institutions, academies of education, and historical societies.  No one knows of anything like this book.  Throughout human history, there are some recollections of books like this one, books that were written by using air vibrations.  However, as far as I know, no one is aware of existing copies.  That leads me to believe that Michael’s Lyric is the first and only book of its kind.  In 2011, when the first paperback, “Michael’s Lyric (420 Flowers Behind XVI Bars)” was published, I didn’t think of it that way.  I was just happy that it worked.  It was like in the movie Back To The Future.  “It worked!  It worked!  It actually worked!!”

My website, www.michaelsLyric.com, is and always will be the home for the book series.  The domain existed before the book.  It took 16 years, 6 computers, 4 wheelchairs, and many microphones to create this collection of work. Just 8 years before the first lyrics were recorded as a demo, I was 13 years old, starting junior high school, and I knew almost no English. I remember one of the teachers taking an apple out of a lunch bag and saying, “APPLE.” Most people called me by my name, Misha. One day, I was watching TV, and I saw this amazing artist, Michael Jackson. I thought, wouldn’t it be cool if my name was Michael. I didn’t realize that Mihail is Michael, in Russian. And soon as my family moved from Moscow to Chicago, my name became Michael, automatically, out of convenience. At the same time, something else significant happened.  I fell in love with Hip Hop and R&B.  In 2009, when it came to choosing a name for the first book, it was natural, “Michaels Lyric.” That collection was available only in a form of a digital file.  In 2010, I decided that for every new book that is to come out, Michael’s Lyric shall be the name for the book series and the title of the most recent chapter shall be the name of the most recent book in the series.

That brings me to the title of the current book, “Michael’s Lyric (Flow Of Illuminati).”  There are several ways to understand this title.  Illuminati, of course, means enlightened. At some level, all is enlightened, everything and everyone.  Otherwise, nothing could exist.  And so, the title; “Flow Of Illuminati,”flow of humanity.  The 2nd and the 3rd chapters of the book contain 16 bar Hip Hop poetry verses.  Just like many Hip Hop lyricists, I pride myself on the flow of my bars.  Dare I say that there is no one in Hip Hop that writes like me.

Music, lyrics, Hip Hop, stories, the good, the bad and the ugly… it’s all in this book.  And yes, in its own way, it does talk about difficulties of having a physical disability.  But mostly, this book is everything that is human.  It celebrates the ability of Creation to expand and evolve, no matter what. This existence is all about love and passion. Follow yours.”

 

 

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.

Study on the Genetic Causes of CP Enrolling Children & Parents

10653573_759980260730989_8929846704564727633_n


Study on the Genetic Causes of Cerebral Palsy (CP)

 

The CP Genetic Research Network is currently enrolling mothers, fathers and their children with CP in an international genetic study that aims to identify new genes that cause CP. In turn, these discoveries will lay the foundation needed to improve diagnosis and treatment for affected children. Participation is simple– simply allow them to collect a cheek swab from the comfort of your home.


If you would like to participate or receive more information, please contact Jessica, the CP Genetic Research Network study coordinator at kruerlab@sanfordhealth.org.

 

Click HERE for their study flyer. You can also learn more by checking out their Facebook page.