Help “End the Awkward”

UCP is proud to be a part of a the District of Columbia’s “End the Awkward” campaign this July 15.

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To recognize the 25th Anniversary of the Americans with Disabilities Act, the Government of the District of Columbia is sponsoring a one-day campaign to share information raising awareness about disability issues. The campaign, entitled “End the Awkward: Focus on the Person, Not the Disability,” will take place on July 15th and include the participation of numerous government agencies, community organizations, businesses and members of the public.

Participants in D.C. are encouraged to wear “End the Awkward: Ask Me How” pins, prompting questions that are responded to with information on how to act respectfully toward people with disabilities without being awkward. Registration for businesses and members of the public opens today and is free at ohr.dc.gov/page/endtheawkwardDC.

The “End the Awkward” initiative is part of D.C. Mayor Bowser’s Administration’s efforts to strengthen connections between residents, regardless of who they are, where they live or where they’re from.

“The Bowser Administration is asking District businesses, people with disabilities and their allies to participate so we can educate as many residents and visitors about interacting with persons with disabilities,” said OHR Director Mónica Palacio. “Participants in our event do not need to be experts on disability rights issues, but they do need to answer questions in respectful ways. If you manage a business or simply live in or work in DC, I encourage you to sign up on our website and we’ll send you a participant package with everything you need.”

Businesses and members of the public who register by July 8 will be sent an “End the Awkward” participant package that includes colorful “End the Awkward” pins, quick talking points for responding to questions, and additional information about the event. While pins are only being distributed to those with D.C. area addresses, everyone is encouraged to join in by printing out the pin design and sample talking points for the businesses in your area at ohr.dc.gov/page/endtheawkwardDC.

Also, you can help promote the event on social media using #EndTheAwkwardDC! Members of the public can register online at endtheawkwardDC.eventbrite.com and businesses at endtheawkwarddc-business.eventbrite.com. Find out more about how to help spread the word in D.C. and beyond here!

Find Out More About the District of Columbia Office of Human Rights

The District of Columbia Office of Human Rights (OHR) was established to eradicate discrimination, increase equal opportunity and protect human rights for persons who live in or visit the District of Columbia. The agency enforces local and federal human rights laws, including the DC Human Rights Act, by providing a legal process to those who believe they have been discriminated against. OHR also proactively enforces human rights in the District through Director’s Inquiries, which allow it to identify and investigate practices and policies that may be discriminatory.

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.

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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.

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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

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.

Innovation Lab Coming to Chicago in May

Washington, D.C. (April 3, 2015) – 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.

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.

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 see 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.

 

 

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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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 Signs on to Letter to Congress Supporting the ACA

In time for the 5th anniversary of President Barak Obama’s signing of the Affordable Care Act (ACA) into law, UCP has signed on to a letter expressing our support for maintaining affordable access to comprehensive health insurance coverage for people with disabilities. Acting as part of the Consortium for Citizens with Disabilities (CCD) – a coalition of more than 70 organizations working for people with disabilities and their families – UCP joined in sending this letter to the U.S. House of Representatives and Senate demonstrating that support and expressing our concern that proposals and legislation being debated in the 114th Congress which may undermine the progress being made to ensure people with disabilities have access to the care they need to lead healthy, fulfilling and independent lives.

Read the full letter here.

 

 

Videos Show That #CerebralPalsyCAN During Awareness Month

March is National Cerebral Palsy Awareness Month. Throughout the month, United Cerebral Palsy will be encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan on social media. On March 25, National CP Awareness Day, UCP and our partners in this campaign (listed below) will will feature submitted videos on our social media channels and websites.

Cerebral palsy (CP) is a broad diagnostic term used to describe a problem with movement and posture, due to damage or abnormalities in the brain that makes certain activities difficult. It is the most common motor disorder and the second-most common disability found in children. UCP aims to demonstrate through short, light-hearted videos that people with cerebral palsy have a range of interests and abilities, and in that respect are no different than anyone else. Find out more about the campaign and watch the video on My Life Without Limits, UCP’s new online resource and community for individuals with a range of disabilities at www.mylifewithoutlimits.org.


#CerebralPalsyCan Campaign Partners

United Cerebral Palsy: http://ucp.org/
My Life Without Limits: http://mylifewithoutlimits.org/
HandicapThis!: http://handicapthis.com/
Love That Max: A Special Needs Blog: http://www.lovethatmax.com/
The Cerebral Palsy Swagger: http://cpswag.blog.com
Ms. Wheelchair Michigan: http://www.mswheelchairamerica.org