CP Wiki Write-athon Offers Cash Prizes for Content

The World CP Initiative, in which United Cerebral Palsy plays an active role, has just launched a Wiki that is devoted exclusively to cerebral palsy. Throughout June and July, UCP and the other organizations which make up the World CP Initiative, will be promoting a CP Wiki Write-athon to encourage people to post content on the Wiki.

About the Wiki

For those of you who are not familiar, the Wiki is an online knowledge base on cerebral palsy and related topics for everyone: people with disabilities, parents, caretakers and professionals in the medical and disability fields. It’s just getting started, so we your help to create and improve content and to spread the word.CPWikiWriteAthon

Join the Competition

The CP Wiki Write-athon competition runs throughout June and July. There are 30 x $500 prizes for the best and most content added – including the best organization page and the best country page.

Spread the Word

Anyone can write about CP and take part in the Write-athon. You can write about services, people, sports, technology, travel, health, employment, education, films, books… any CP-related topic.

Please spread the word:

1.  Share this blog post with your family and friends

2.  Print out and post this write-athon poster at your school, workplace, community center, library or other public places you visit

3. Add this news item to your personal blog or website if you have one

4. Replace your Facebook cover pic with the World CPWikicover for June and July

5. Use the simple template on the wikihome page to create a page about CP in the United States

6. ‘Like’ the World CP Day Facebookpage and share the Wiki updates

Jump In and Add Content! 

As you’re browsing the wiki, remember that it’s fine to add or edit wherever you want. Anything you change or do will show up on the wiki for others to pick up and expand on – and as the site grows you’ll see that happening more and more! In the wiki world we say “Be bold!” because anything you do is valuable. Even if you ‘break’ something, a fix is always just a few clicks away – and somebody will come around to fixing it sooner rather than later. So don’t be afraid to give it a try.

 

UCP’s 2015 Annual Conference Wrap Up

UCP’s 2015 Annual Conference, “Reflecting Our Mission, Focusing Our Vision,” concluded in Chicago on Friday with nearly 200 leaders of UCP’s membership gathering to discuss current affairs, honor distinguished colleagues and supporters and share knowledge to improve the network.

RJ Edited

Gloria_Jack

Several special guests, including UCP Celebrity Youth Ambassador, RJ Mitte joined in the sessions. Mr. Mitte is best known for his role a Walter White, Jr. in AMC’s “Breaking Bad.” He actively supports disability causes and speaks about his experiences as an actor with a disability to raise awareness. He just  wrapped several feature films over the last year, including DIXIELAND starring alongside Faith Hill and Riley Keough, which just premiered at the Tribeca Film Festival in 2015 and was first role he’s portrayed a character without a disability.

In addition to sharing his views on the future for people with disabilities in a session called “Reflecting on Our History, Focusing on our Future,” he presented UCP’s annual Outstanding Youth Award honoring Daniel Lopez and Lake Periman and Life Without Limits Award honoring O’Ryan Case. Daniel and Lake have made a huge impact on their central Florida community of Lake Mary, raising thousands of dollars for United Cerebral Palsy of Central Florida over the past four years. They have worked tirelessly to organize events and engage the media and their community to raise awareness about cerebral palsy. O’Ryan Case is an individual with CP who has demonstrated leadership and achievement to such a degree that he is a significant role model to people with and without disabilities through his work at UCP’s national office.

ORyan Case_RJ Mitte 2

Dr. Eva Ritvo was awarded with the Volunteer of the Year Award for her work and efforts for UCP of South Florida. And, Dr. Charlie Law and UCP of Greater Birmingham were recognized for their Life Without Limits clinic with the Outstanding Program of the Year award.

Awards Committee_Dr. Ritvo_RJ Mitte

Lake_RJ_DanielAlso, UCP was honored to hear from Joe Russo, Deputy Commissioner from the Chicago Mayor’s Office for People with Disabilities who spoke about the ADA’s 25th Anniversary celebration in Chicago. He joined a panel with Mr. Mitte, CEO of UCP of NYC Ed Matthews and the venerable Jack Schillinger to discuss the past, present and future of UCP.RJ_Joe Russo_Gloria_Armando_Central AZ
Jack Schillinger, Chair Emeritus of UCP of South Florida and current Bellows Fund Chair celebrated his 95th birthday with the honor of UCP’s Chair Award given by Gloria Johnson Cusack in recognition of the direct impact he has had on the lives of people with disabilities and their families during his long career.

Linda Johns, CEO of East Central Alabama United Cerebral Palsy was given one of the most prestigious honors this year, receiving the Kathleen O. Maul Leadership Award. This is presented to an affiliate leader who embodies the leadership characteristics that were embraced by Executive Director, Kathy Maul, for whom the award is named.Maul Award Winner

On Wednesday evening, the attendees were joined by the winning teams who competed in UCP Life Lab’s Innovation Lab, held on Tuesday and Wednesday And, on Thursday evening, UCP held a special screening of “Margarita With a Straw” – a critically-acclaimed film about a woman with cerebral palsy. The movie was inspired by the daughter of Sathi Alur, a member of the World Cerebral Palsy Institute who held an informal Q & A session after the screening.

Enjoy more photos from the event on UCP’s Facebook page and make your plans now to join us next spring in Las Vegas for the 2016 Annual Conference (dates to be determined).

UCP Thanks Our Sponsors!

Merz Pharmaceuticals

MetLife Center for Special Needs Planning

Careerbuilder

Therap

Uber

Infinitec, a Program of UCP Seguin of Greater Chicago

Ability Magazine and Abilityjobs.com

Blackbaud

Twin Brothers Step Up for UCP’s Steptember Challenge

United Cerebral Palsy (UCP) kicks off its annual Steptember Challenge registration 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.

Being Honored in 2013

“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.”

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For more about Steptember, please visit www.steptember.us.

Cleveland Clinic Children’s and UCP of Greater Cleveland Co-Host “Go Baby Go”

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.

UCP Cleveland

Cleveland Clinic

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.

 

Making Technology Accessible for Everyone

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

 

How many of you are aware that 2015 marks the 25th anniversary of the American Disabilities Act?

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.

Making Technology Accessible for EveryoneLet’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.

Making Technology Accessible for Everyone

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.

Making Technology Accessible for Everyone

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.” 

To learn more about Microsoft’s investment in accessibility, see how our products have built-in accessibility features.

UCP Affiliates Earn Awards for Excellence

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.
Outstanding Youth
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?

United Cerebral Palsy: Life without limits for people with disabilities

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.24JL04GD

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.11JE04GD

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.

Innovation Lab Design Challenge Debuts

Intensive Two-Day Event from UCP’s Life Labs Coming to Chicago 

 

United Cerebral Palsy (UCP) Life Labs initiative will bring an intensive, two-day design challenge called an Innovation Lab to Chicago May 19-20, 2015. Following successful events in London, Washington DC, and Sydney, Australia, the Innovation Lab (formerly called Enabled by Design-athon) brings together people from all walks of life under the principles of Universal Design to dream up the next big idea for people with and without disabilities.

.Innovation Lab Header

At each Innovation Lab, this diversity of talent from a variety of fields is coached to use human-centered Universal Design concepts to solve every day problems as part of a competitive yet collaborative design challenge for team prizes. Designers, engineers, inventors, makers and hackers as well as professionals and caregivers in the disability field are all encouraged to contribute their unique perspectives to the process.

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Innovation Lab Featured Speaker Paul Edlund – Microsoft Core Technologies Chief Technologist

The inaugural Innovation Lab scheduled for Chicago will take place at the Microsoft Technology Center and will be co-hosted by Smart Chicago. Smart Chicago is a civic organization devoted to improving lives in Chicago through technology by increasing access to the Internet, improving skills for using Internet, and developing meaningful products from data that measurably contribute to the quality of life of residents in the region and beyond.

“Here at Microsoft we are focused on improving the lives of citizens through technology,” said Shelley Stern Grach, Director of Civic Engagement at Microsoft. “The Innovation Lab focuses on the principles of design to provide opportunity and access to technology for diverse communities, and we’re excited to sMicrosoft Technology Center 2ee what the teams come up with.”

Teams will design and build prototypes or present plans that demonstrate how products can rapidly be created to better fit with people’s lives and needs, no matter what those need may be. UCP’s Life Labs is intent on creating a movement of accessibility for the masses so that mainstream products work for as many people as possible, including those with disabilities and older people. The Innovation Lab events are meant to challenge preconceptions of assistive equipment, showing how products can be personalized, purposeful and beautifully designed too.

“Rather than continuing to retrofit our world to accommodate people with disabilities, there’s no reason why we can’t design our world to work for people of all abilities,” said Marc Irlandez, Director of UCP’s Life Labs.

Registration is now open at http://ucpinnovationlab.org/ Space is limited.

 

Co-hosted by:

Life Labs Logo  smart-chicago-collaborative-logo-1024x269

 

Thanks to our sponsors:

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MSFT_logo_c_C-Gray-300x110sugru-a496657ae9f8fc8b31a1207b5202ff56

The Story of a “Passing Aspie”

The following blog post was contributed by Wendy Katz, who has Asperger’s syndrome, in the hopes that her personal story will raise awareness of the inner struggles of people who live with an “invisible disability” during Autism Awareness Month. Asperger’s is a mild form of autism spectrum disorder. 

My Beautiful Family (3)ResizeSome Castles Have Deep Moats

You probably know me.

At least you’ve seen me around town. I look just like any other soccer mom after all. I have matched clothes and cared for hair, and I go with my soon-to-be-stepdaughter and fiancé shopping at the mall and to the movies like anyone else. I had affluent parents and a good education. I was quiet and shy but sweet and was in the chorus and the National Honor Society in high school. I went to college and got a job, gave polite smiles to my coworkers in the hall and maybe even chatted you up at a cocktail party. I had a marriage that sadly ended in divorce and survived it stoically. I am sure that you know me, or think you’ve met someone just like me.

But the truth is that you don’t really know me at all. Like millions of others, I have what is called an “invisible disability.” Invisible disabilities are those that one cannot see on the surface. Many intellectual and developmental disabilities (I/DD) fit into this category, such as learning disabilities, mild autism spectrum disorders like Asperger’s syndrome, and mild cerebral palsy. I’m a “Passing Aspie” – one of the ninjas of the invisible disability world. You have to know us fairly well to ever see our truth.

I coined the term “Passing Aspie” (short for Asperger’s). Asperger’s syndrome is a mild form of autism in which a person can speak clearly and has an average–to-devastating level of intelligence, but goes through life with social difficulties and often sensory issues. Even if you think you don’t personally know anyone on the autism spectrum, you have seen “The Big Bang Theory” and understand the portrait of Sheldon that is being painted there.

Passing Aspies are different. We are the people on the autism spectrum that you do not see wearing a visor to avoid fluorescent lights. We have learned to adapt, and honestly I doubt there are any accurate numbers on how many of us are out there because we rarely get formally diagnosed. That said, our inner brains and inner lives share autistic traits, and you cannot know our challenges unless we tell you. So today, in honor of Autism Awareness Month, I agreed to try.

Eyes and Excuses

More likely than not, you have noticed that people on the autism spectrum have difficulties with eye contact and visual recognition. I wasn’t diagnosed with Asperger’s as a child but I spent my childhood at war with my eyes. I have always been (and still am) visually unobservant and often use my other senses to compensate. I am nearsighted in the extreme but do not feel a need to wear glasses because my sensory world is still rich in so many other ways.

I spent my childhood with total face blindness, but I didn’t know what to call it. I never heard the term until I was old enough, through painstaking neural rewiring, to recognize at least the faces of those I saw frequently and the people I loved. (I still can’t recognize familiar actors in movies sometimes if they change their makeup or hair.) I learned to say the things that people expected to hear to explain why I couldn’t make friends in preschool. I was “bad with names” and couldn’t remember them. I was shy. Or, I “didn’t need friends.” Or the “other kids didn’t like me.”

The truth was both more obvious and far scarier: I couldn’t recognize anyone. If I played with a little blonde girl on the playground one day, I had no way of ever finding her again. I had no words to explain this because I was unable to comprehend why this was. I just figured that other children were smarter and better at seeing visual cues. I would try to tell my mother, but I doubt she ever understood the whole truth. I am sure that other children thought I was snobby or weird for pretending like we had never played together before, and so I was lonely.

The eye problem most commonly associated with people on the spectrum is, of course, eye contact, and I have that problem too. People always ask me why I can’t make eye contact. Actually, I can and do force myself to make at least brief eye contact with others as part of my passing act. But extended eye contact is emotionally painful if I am not truly intimate with you. The closest I can get to describing how it feels to me to meet someone’s eyes is to compare it to the feeling you would get if asked you to stare at a stranger’s naked body for several minutes. It feels embarrassing, awkward, invasive and socially wrong. I can hold my mom’s gaze or my fiancé’s (I do see him naked after all), but socially it just feels embarrassing. So I let people think that I am just shy.

Sensory-Overload Pokerface

In many ways, the hardest part about dealing with Asperger’s both as a child and a passing adult is sensory overload. I use my ears to compensate for my eyes and am better at recognizing people’s voices than faces. I am also a great mimic with an audiographic memory. This came in great handy for school lectures or eavesdropping (I got away with this like you wouldn’t BELIEVE.). But there is a dark side to sensory sensitivity!

I cover my ears while during fireworks and was afraid of the hairdryer until I was five years old. My sense of taste was way over the top along with my sense of smell, causing sensory pain that most of you cannot even imagine. On hot days in enclosed spaces, I would feel that I was suffocating because I could smell the individual odors of every person in the room. All of those different smells mixing together would make me dizzy, but what could I do? I was aware enough to know that no one else could smell what I did and that no one would believe me.

I gag at the bitter taste in vegetables. Needless to say, adults weren’t buying my explanation and accused me of faking it. Fruits have very strong smells that overpowered. me. For nutrition, I had to take vitamins and eat baby food well into the first grade. That ended after a friend told our whole class at school.

But these are only minor challenges compared to some of the invisible demons that come with my invisible disability.

Invisible Moat, Invisible Alligators

I have often been asked about the worst part of being on the spectrum. This is where the monsters come out. Sexual abuse is very common among people with intellectual and developmental disabilities (I/DD), three to four times more likely than for children without disabilities. When you realize that one in every five women is in the U.S. is sexually assaulted as a minor, you can see that many people with invisible and visible disabilities alike are sexually assaulted every day. I was no different.

When I was nearly six years old, my mother hired an ordinary female babysitter to watch me for during the summer while she and my father worked. Unfortunately, the sitter was a predator, and I was in no state to defend myself or report her. I totally repressed the memory for many years after struggling in vain to comprehend what was happening. The pain was right beneath the surface though, and when you can’t speak about your pain or even understand what happened to you, the effect is devastating.

I know you are wondering what kind of person would put their byline on an article that included this detail, and I will tell you. It’s a person determined to break the silence. I had many strikes against me when it came to getting help and healing for my abuse. Questions that parents normally ask children to get them to open up completely went over my head. I didn’t even understand that what I was forced to do was sexual abuse; I saw it as punishment and figured it was normal. And, I lacked the courage and the words to confront any adult’s behavior as “wrong”.

I want to let you know that although it is difficult to know if a person with an invisible disability is being abused, it is not impossible. Look for signs and read between the lines. We are human, and we do feel pain. For example, a scared child that is at a loss for words and calls her babysitter “mean” may be trying to tell you something, especially if she doesn’t verbalize negativity often. You may also notice that under the stress of abuse, the invisible disabilities in your child multiply. From age 6 on, my self-esteem plummeted. I developed claustrophobic behaviors and panicked if I had to wash my hair under the shower. I also spent larger amounts of time alone in various hiding places around my home. In addition to my increasingly apparent posttraumatic stress disorder, I suddenly began suffering from obsessive-compulsive disorder, and began to behave erratically and suffer nightly insomnia. In another child, these would have been extreme warning signs, but because my behavior was somewhat odd to begin with, due to the autism, people let this go as more evidence of my disability.

Dragonslayer

So what I just described is a far cry from being a Passing Aspie you say. Well, that took many years and a lot of hard work on my part. I focused hard on grounding techniques, which helped me to mentally stay in the room with my classmates and break out of my dissociations. I worked up the courage to makeMy Beautiful Family one or two close friends, and as I fought to memorize their faces, the fog in my neural pathways lifted, and I began to see other faces. I practiced friendly facial expressions in the mirror until they felt less awkward. I traded homework help for social comfort.

By high school, my hard work had begun to pay off. New neural pathways took over my brain, and being social began to feel more natural. When I cracked under the stress of completing an extra hard course load with obsessive-compulsive disorder and became clinically depressed, I was finally got the treatment and medication I needed. One of my psychiatrists even figured out that I was on the autism spectrum. It was too late to truly benefit from services at that point, but knowing that I had a real disability and wasn’t just defective as a person helped me to forgive myself. I am proud of the work I did to make my life come together.

I have never been more proud of myself than the day I earned my Masters degree in Social Work and walked across the stage at George Mason University. I held several jobs working in foster care placement, a homeless shelter, and a nursing home and am proud to say that I never once got singled out as an Aspie or told that my work was impacted by my disability.

Am I Magic?

I get asked about “special” talents often. People want to know if I can do magic tricks like multiplying large numbers in my head or know what day of the week November 12th, 2028 will be. The honest but disappointing answer is that I do have a savant talent, and I just told you all about it. Being a Passing Aspie is harder than it looks. I don’t have the genius of many on the spectrum, but being me requires conjuring more strength, endurance and effort than you know. I noticed that unlike a lot of people my age, who typically sleep seven to eight hours a night, I need nine or ten hours to feel rested. I believe that this is the extra energy that my brain uses to filter out the sensory distractions and social challenges so that I can pass successfully.

By the time you notice the horrible beeping noise coming from the microwave at McDonalds, it has been hurting my brain for five minutes or longer. I no longer hear it, however, because my mind subconsciously noticed this immediately, determined that it was enough to make me crazy, and filtered out the noise. Also, the energy it takes me to make casual conversation with acquaintances and make eye contact while doing it would rival what it takes nuerotypical people to give a high-level presentation at work. My trick is that you don’t see it.

What Do You Mean, I Lack Empathy?

My biggest complaint as a Passing Aspie is listening to people go on about how people with autism lack empathy. Excuse me, but says who? Isn’t what you really mean that people on the spectrum don’t understand how YOU are feeling??

The truth of the matter is though that you don’t understand how people on the spectrum feel any better than we understand you. More than half of the time, you don’t even spot me hiding in the crowd. Before you reject this theory, ask yourself if you could do what I do every day of my life and pass in a room full of people on the autism spectrum the way I pass among you. Didn’t think so!

I don’t want to criticize neurotypical people. It’s just insulting and hurtful me to hear that I am believed to lack empathy when my best savant talent has been to develop empathy at such a level, that I cannot only pass as neurotypical and live in your world but very often translate between people on the spectrum and people who are not and represent both with a startling degree of accuracy.

If you have read this far, I want to thank you for having the empathy to hear my words and relive my struggles with me. Please show this empathy to others with invisible disabilities and imagine them walking in very uncomfortable shoes. If you truly can’t do this with compassion, then please keep it to yourself and do not talk about what you think you know about my autistic brothers and sisters.

 

 

UCP Board Chair to Run National Human Services Assembly

Gloria Johnson-CusackUCP is thrilled to announce that the chair of our national Board of Trustees, Gloria Johnson-Cusack has been selected to head the National Human Services Assembly as its new president and CEO beginning in April. The Assembly is a Washington, D.C.-based organization comprised of nearly 90 national nonprofits and is focused on shaping public dialogue and building capacity for the human services sector. Gloria has served on the UCP Board for several years, becoming Chair in October, 2014. We are proud to have a leader of her caliber helping guide UCP. Read more below from today’s press release from the National Human Services Assembly. 

 

National Human Services Assembly Names Johnson-Cusack as New President and CEO

WASHINGTON, March 2, 2015—The National Human Services Assembly, a D.C. based organization composed of nearly 90 national nonprofits, announced the selection of Gloria Johnson-Cusack as president and CEO effective April 6, 2015.

“Gloria’s stellar record in leadership positions across the nonprofit, for-profit, and governmental sectors gives us complete confidence that she is the right person to continue to grow the National Assembly’s ability to deliver, both for its members and for society at large,” said Cindy Lewin, executive vice president and general counsel at AARP, and part of the search committee at the Assembly.

Brian Gallagher, president and CEO of United Way Worldwide and standing vice chair of Leadership 18 echoed Lewin’s sentiment, “Gloria is well-suited and well-prepared to lead the Assembly. She is all about collaboration, knowledge sharing and innovation within the nonprofit community.” Gallagher continued, “I’m certain she will draw on her years of experience working with our CEO cohort. Together at Leadership 18, they have tackled the toughest community and leadership challenges of the day.”

Johnson-Cusack brings more than 20 years of expertise informed by leadership positions in the private sector, charitable sector, U.S. Congress, federal and municipal government, national presidential campaigns and the White House. Before joining the Assembly, she was executive director of Leadership 18, which is an alliance of CEOs responsible for leading the oldest and largest human services nonprofits. Almost all Leadership 18 organizations are members of the Assembly.

“I have proud working-class roots and feel a deep, personal sense of responsibility to create more opportunities for more people. The status quo is not good enough,” explained Johnson-Cusack.

“At its heart, that’s what the Assembly is about and it is my honor to champion change in partnership with these passionate, innovative leaders.” Johnson-Cusack is national chairman of the board of trustees for United Cerebral Palsy. She served as senior vice president at GMMB, a D.C. based strategic communications and advertising firm where she advanced social and health causes on behalf of key nonprofit organizations, foundations and national associations—from improving supports for low-income students completing college to advancing diversity in the practice of law and medicine to addressing obesity nationwide.

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.

Johnson-Cusack holds a bachelor’s degree from Columbia College, Columbia University and a master’s degree in public administration from the Key Management Program at American University. She is a founder of the Eli J. Segal Citizen Leadership program at Brandeis University.

“I’ve been impressed with Gloria’s willingness and ability to forge coalitions among very diverse partners nation-wide,” stated Adam Meyerson, president of the Philanthropy Roundtable. “She demonstrated this ability in our shared advocacy to protect charitable tax incentives for the last few years. She listens and looks for shared interests and goals.” Meyerson added, “The philanthropic community needs more of that.”

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About the National Human Services Assembly The National Human Services Assembly, a D.C. based organization comprised of nearly 90 national nonprofits is focused on shaping public dialogue and building capacity for the human services sector. Assembly members, and their local service networks, collectively touch, or are touched by, nearly every household in America—as consumers, donors or volunteers. They comprise a $62 billion sector that employs approximately 1.2 million workers operating from 100,000 locations. The Assembly facilitates a robust learning community among nonprofit professionals and provides group purchasing services to more than 3200 organizations.