Author of “El Deafo,” CeCe Bell, reveals the book’s backstory

RevisedChapter4PanelsWe are extremely pleased to introduce Cece Bell as a guest blogger today. Her graphic novel El Deafo is a loose biographical account of her childhood living with deafness, and it won a Newbery honor this year.

by Cece Bell

One of the more uncomfortable experiences I sometimes have as a deaf person is when I cannot understand the person speaking to me. And so, the person speaking to me gets annoyed with me, or even angry. Perhaps the person thinks that I am not listening, or that I don’t care. They don’t know the real reason, which is simply that I cannot hear them — or anything, for that matter — very well.

The easiest way to deal with a situation like this is to say, “I’m sorry. I can’t hear very well. Could you repeat that?” I am able to do that now. But for years and years, I couldn’t. I was too ashamed.

About seven years ago, I was in the check-out line at our local grocery store. Annette the cashier was never all that pleasant — her gruff manner made her really hard to lip-read. That day I was preoccupied with who knows what, and so I wasn’t as attentive in my lip-reading as I usually am. I couldn’t understand anything she was saying.

As I floundered around trying to make sense of all the usual “find everything OK paper or plastic have any coupons that’ll be $120.43 debit or credit” Annette became increasingly agitated with me. Her usual gruffness turned into real anger. I was flustered, and after paying for my groceries I rushed with my cart out of the store.

I was halfway to my car in the vast, hot parking lot when Annette suddenly reappeared at my shoulder and spat out, “You FORGOT your RECEIPT.” I thanked her through gritted teeth and was completely in tears by the time I got to my car.

In a haze of frustration and crying my eyes out, I replayed that unfortunate interaction over and over the whole drive home and fantasized about what I should have done and what I should have said. Why didn’t I just pull out my hearing aids, shove them in Annette’s face, and say, “I can’t understand you. I’m deaf. See?”

But that’s not what I did, because I’ve never done something like that. I had been deaf for over thirty years back then and I couldn’t say those words—I just couldn’t.

When I got home, I told my husband Tom what had happened. He immediately called the grocery store to complain. Tom said everything I should have said. When he hung up, he informed me that the manager had had lots of trouble with Annette, and so he was going to demote her to the meat department.

A victory for sure, but a hollow one for me. I should have been the one complaining to the manager. I should have fought this battle myself.

For days afterward, I thought about Annette and how terrible she had made me feel. I thought about how terrible I had made myself feel for not speaking up. I wanted to vent, so I started a blog called El Deafo. El Deafo was the name of my childhood superhero alter ego, the one who said the things and did the things I wish I had said and done, but only in my daydreams.

Starting that blog meant I was ready to stop being ashamed of something that isn’t at all shameful in the first place. I was ready to face the music, even if I couldn’t hear it that well. I was ready to tell the world. I AM DEAF.

That blog was the spark for my graphic novel, El Deafo, an autobiographical graphic novel that chronicles my childhood experiences with deafness and friendships. Writing El Deafo forced me to re-examine the shame I had felt and to put that shame behind me. El Deafo tells the world that I AM DEAF, and the incredibly positive responses that I have received since its publication have proven one thing: sharing your differences with the world does indeed make you a stronger person. I made my own life so much better when I wrote El Deafo. I can only hope that it might help others, too.

 

Just a delay, or autism?

Minolta DSCRecently a large company invited me to speak at a neural diversity day. Speaking at corporate events isn’t something that I think of when I think of my job, but that’s exactly the reason that this avenue is so important.

The attendance wasn’t the greatest — in fact, at 22, it was rather low. The numbers are irrelevant, though. It’s the impact my presentation has on the people who are there that matters.

You see, for those already aware of what the autism spectrum is, there are plenty of places to look for information on the disorder. But what about a parent who thinks their child might have autism? For a person like this, it may be difficult to justify attending a workshop like mine, especially if they’ve been told by their doctor what my parents were told for so many years: “Oh, don’t worry about your child, he’s a bit delayed in some areas but that’s because he’s just smarter. He’ll outgrow it.”

Those words are exactly what a parent at this presentation had been told. I gave an abbreviated version of my presentation, and the 55 minutes flew by. I got plenty of applause when I was done, and as I was walking out with my Easter Seals Midwest coworkers, a woman from the audience stopped us and just broke down crying. I froze. I don’t really know how to react in this situation, so I just listened to her story.

The more she told me about her child, the more he sounded like me. Fixations, obsessions, and a fascination with anything that spins. The doctor had told her the same thing my doctor had told my parents, and for the first time in her life she had an answer as to why her child is the way he is. “Aaron, coming here was the most important thing I’ve ever done,” she told me. “For once I have hope.” Those are five words I will never forget.

Related Resources:

If you’re curious about your child’s development, take the Ages and Stages developmental screening on www.MaketheFirstFiveCount.org.

 

And the winners of the Disability Film Challenge are…!

Disability-Film-Challenge-LOGOI’d like to introduce Nic Novicki, the founder of the Disability Film Challenge, a 48-hour short film competition. The film challenge’s purpose is to motivate disabled and non-disabled film makers to be proactive in the film industry and to supply them with a means of exposure for themselves and their projects. Plus, it’s fun and there are prizes! Nic is announcing the winners here today on Easter Seals blog.

I am a little person actor, comedian, and producer who has been working in the industry since the age of 7.  Though I have been lucky enough to work as an actor on shows such as Boardwalk Empire and The Sopranos, early on in my career I didn’t always get offered the best parts or would get typecast due to my stature. So I started worked behind the scenes and produced features, short films, web series, live events, and commercials.

Nic Novicki

Nic Novicki

After learning how to produce, I soon realized that I had to take my career in my own hands in order to get the types of roles and projects that were interesting and challenged me.  Today, I am a proud member of the Producers Guild of America and recently when I was participating in a 48-hour film race for the Producers Guild, it occurred to me that I might have been the only filmmaker with a disability that was going to be making a film.

I was reminded once again that the disability community is not represented enough in the mainstream media.  One in five people have some form of disability, yet people with disabilities represent less than one percent of characters on TV shows and movies.  It is even rare to see people with disabilities behind the scenes.

I thought to myself, if I come up with a short film challenge that incorporates people with disabilities, I can help them get further involved in the business and provide visibility to an underrepresented and vibrant community.

The idea behind The Disability Film Challenge is to give both disabled and non-disabled filmmakers a reason to work together. Every film has to have an actor, writer, director, producer, or crew member with a disability. 

The winning films screen at the world renowned TCL Chinese Theater during the Hollyshorts Film Festival and filmmakers are set up with big-time Hollywood mentors as well as winning Dell computer packages.

The challenge, now in its second year, keeps growing!  This year we had three times the amount of people enter as we did last year.
After a difficult selection process I am proud to announce the winners of the 2nd Disability Film Challenge

The 2015 Disability Film Challenge Winners

Best Film: Bumblebees
Jenna Kanell, the writer, director and producer of Bumblebees will receive a Dell Precision M4800 Mobile Workstation and will be mentored by Producer Lynn Hendee (Ender’s Game) who is the President of Chartoff Productions.

Best Filmmaker: Passengers
Dickie Hearts wrote, directed, edited, produced and starred in Passengers.  He will receive a Dell Venue tablet and be mentored by Peter Farrelly (Dumb and Dumber, Something About Marry, etc).

Best Actor: Spanish Love 101
Steve Way who played Steve in Spanish Love 101 will receive mentorship from casting director Pam Dixon.

Social Media Award: I Understand You
Stephen and Lori Saux won the social media award for creating the best marketing campaign.  In the 2 weeks of the campaign they were able to get over 6,000 youtube views, through: twitter, blogs, facebook, and a website they created for their film. They will receive a Dell Venue Tablet and a meeting with Bret Ingraham who is a Manager of Public Relations at Mattel, Inc.

On top of doing the 48-hour film challenge we are also doing free workshops to give disabled filmmakers more skills throughout the year.  Last year we did an editing workshop at the Producers Guild of America:

This year we did a camera and editing workshop at Youtube Space LA too.

We are looking forward to doing more workshops and challenges in the future and getting more disabled people involved in the media!  It is so exciting to me to see the progress so far and I already can’t wait for next year!

 

Great video to help kids with autism make gifts for Mom

Rethink_Autism_Tip_Celebrate_Mother_s_Day_with_these_Fun_Activities_for_Mom

How-to video for kids with autism to learn to make gifts for moms

My husband and I are taking off this weekend to visit our son Gus in his group home in Wisconsin. Gus won’t understand that it’s Mother’s Day, but as always, it will be great just to be with him.

Children with severe disabilities can find it challenging to express their feelings on Mother’s Day without guidance from a parent, teacher or caregiver. That doesn’t mean a family shouldn’t celebrate, though! Children with disabilities can mark the day in small ways that can speak volumes. Sometimes Gus signs a simple card. One year we took a scribble Gus had drawn and transformed it into a pin. This year, Mike and I are treating ourselves to a night in a favorite hotel after our visit with Gus. For us, Mother’s Day won’t be just one day. It’ll be an entire weekend.

If you are looking for ways to celebrate Mother’s Day, a company called Rethink Autism might have an idea for you. They’ve created a free YouTube video with a few tips on how to teach a child with autism to appreciate Mom by making a gift or even using a microwave oven to make a meal. I checked out the video myself — it’s straightforward and easy to understand. Take a look and see what you think — I’m off to pack. Happy Mother’s Weekend!

Meet some Amazing Moms who were inspired by their children to invent things!

 

The Smashing Pumpkins and Easter Seals Come Together on Big Issue

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Billy Corgan and COL. David Sutherland on MSNBC’s “Morning Joe” talking about veteran issues

Making it happen. Getting it done. Those are traits I admire, and this week they are on full display at Live Nation in an announcement made by Billy Corgan and The Smashing Pumpkins.

Before going any further, I must issue a disclaimer. I hail from the Stevie Ray Vaughn generation. Until two months ago I was not all that familiar with The Smashing Pumpkins, let alone Billy Corgan, the band’s lead singer. Then a colleague from the Teamsters sent me a video of the band’s new single, “Drum + Fife,” with an invitation to speak with Billy after viewing it. The video was awful. And awesome. It epitomizes the suddenness and the sadness of war. Yet the final scene also touches on a hope for future connections and the optimism and opportunities ahead when service members return to their communities.

One week later I was meeting with Billy, who was experiencing what so many civilians go through. He wanted to lend a hand but didn’t know how to start or where to go. Fate brought us together and today, as part of Live Nation’s Summer Concert Series event in New York City, he is announcing a movement to drive awareness about the potential of our veterans and military families. (Or, as I describe it in military-speak, “the greatness in our formations.”) This effort will coincide with The Smashing Pumpkins The End Times tour (with Marilyn Manson), which will begin July 7.

I appreciate Billy’s effort because it encourages action. It’s about igniting fan involvement, action and support of the veteran community in hometowns across the country. It’s about promoting social consciousness and solutions, sharing innovative approaches and connecting those who have served. One way to do this is through local Easter Seals affiliates, who provide services ranging from adult day care, to job training, to camping, recreation and respite programs.

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The Smashing Pumpkins tour poster

Billy and I have dubbed this effort “New Beginnings: Reaching America’s Vets.” It’s a play on words of his tour name, The End Times, because coming home should not be the end. It should be a new beginning for these brave, talented men and women.

Keep an eye on Billy Corgan and the Smashing Pumpkins this summer. I’ll be going to my first show in the next few months, and I’m looking forward to putting Billy’s plan into action.

And if you are a veteran or member of a military family, reach out to your local Easter Seals. We might be able to make your transition back into the community a bit smoother with caregiver support, employment skills training and respite services, among others.

If you want to be inspired, buy a ticket to the concert, buy the album, but you must listen to Drum + Fife. Giddy up!

 

What’s it like to work at Easter Seals headquarters?

What goes on at Easter Seals headquarters way up on the 24th floor of Willis Tower? Instead of sharing a long list of things we do to advance our mission, from developing new programs and resources to fundraising, we thought we’d share a video from two people with a fresh perspective—our most recent interns, Renee and Samantha.

Thanks for all your wonderful work, Samantha and Renee!

If you’re interested in working for Easter Seals too, take a look at our job openings and send us your resume.

Or, if you’re looking for employment or job training assistance, check out Easter Seals employment resources here.

 

Questions about Jack Gantos’ books about a boy with ADHD

Joey-Do-book-by-GantosAfter my children’s book about Seeing Eye dogs, Hanni and Beth: Safe & Sound, was published, I was asked to join the Society of Children’s Book Writers and Illustrators (SCBWI).

Membership has its privileges.

Tonight SCBWI members are invited to attend the Zena Sutherland lecture at Harold Washington Library Center here in Chicago. Tonight’s lecture, the 33rd annual, will be given by Jack Gantos.

Mr. Gantos has written books for all ages, from small children through adults. His novel Dead End in Norvelt, featuring a fictional character named Jack Gantos, won the Newbery Medal in 2012, but he’s best known for his Rotten Ralph series of picture books for beginning readers and his Joey Pigza series for older children.

The two Joey Pigza books I know about are Joey Pigza Swallowed the Key and What Would Joey Do? The books are written from the perspective of an elementary age boy, Joey Pigza, who has Attention Deficit/Hyperactivity Disorder (ADHD), and while they might be good for adults trying to get into the head of someone with ADHD, I’m not so sure kids with ADHD — especially those who are having difficulty at school or with peers – should be encouraged to read them.

In What Would Joey Do?, Joey’s grandmother tells him she won’t die until he has a real friend. This friendship-thing is so important to Joey’s grandmother that he pretends to have a friend, and his grandmother dies the next day. Through all this, Joey’s parents aren’t really much help to him.

In Joey Pigza Swallowed the Key, Joey doesn’t seem to be able to manage his own behavior, the school and his mom seem unable to meet his needs, and “special education” takes place down in the boiler room away from the rest of the kids.

If I get a chance during the Q&A tonight, I’m going to ask Mr. Gantos why he decided to portray Joey Pigza as such a brave boy without giving him any support from his family, and no hope for any on the horizon. Stay tuned for his answer in a future post!

 

Who has the structure to serve veterans of all generations?

Col Sutherland with ww2 vet-2015Last week I visited Easter Seals Florida in Orlando and met four World War II veterans at the adult daycare center there. It was the highlight of my trip. It also reaffirmed what I love about Easter Seals.

No data exists on the number of non-profits predominantly serving post-9/11 veterans, but it’s a definite trend. Some fantastic non-profits such as The Mission Continues and Hope for the Warriors only work with post-9/11 veterans. It helps narrow their focus which, in turn, increases their ability to be very successful at what they’re doing.  And I don’t fault them one bit.

But there is an urgent need to assist all 19 million living veterans going back to World War II and including the Korea, Vietnam and the First Gulf War eras. That’s what drives me, and that’s why, when looking for a partner after leaving the military, I chose Easter Seals.

Easter Seals is truly a multigenerational organization, serving everyone from infants to senior citizens. I was honored to hold the hand of a World War II veteran of Armenian heritage in Florida and listen as he spoke to me in his native language. We may not have understood what the other was saying, but we shared the bond of kinship through service in our Armed Forces.

Those who know me understand the importance of community to me. Easter Seals has that infrastructure in place with a deep community presence. This community presence allows us to serve more than 165,000 veterans annually with a range of programs customized where the need is greatest. The flexible affiliate structure also allows for responsiveness based on what the veteran requires with a modicum of red tape.

Every day I get to do my life’s mission: engender support for those who have bravely served our country. And as a frugal former Colonel, I appreciate that Easter Seals spends the bulk of its donor dollars (88.1 cents per $1) on delivering quality services.

Thank you, Easter Seals Florida, for being a great host and allowing me to reconnect with the core values that brought me to this organization in the first place.

Learn more about Easter Seals military and veteran services.

 

Is autism about how one perceives the world?

boy-autism-stockAs Autism Awareness Month draws to a close, I can’t help but write one more post about what an honor it is to be invited to schools to educate kids about autism. It is so gratifying to make kids more aware of what it is like to be on the spectrum, and the response I get to my presentations is truly magical.

And to think that I protested the first time I had the chance to present. Oh, I was scared. Scared because what could I say to a fifth grader that would make sense? Scared? Very much so. My protests were futile, however. I was told I was doing it (and they were right to say that to me).

It was a rocky start. Before I began my first ever presentation, I turned to the teacher and whispered, “Help!” She responded that I should start by explaining what, exactly, autism and Asperger’s is. Great idea, but I didn’t know what to say.

Then, a student in the middle of the classroom rose his hand and said, “Excuse me, but, if I’m not mistaken, isn’t autism and Asperger’s just a different way of perceiving the world around you?” There was this hush after that. I was taken aback. And then I responded, “Hey, you want my job?”

From there it’s just grown and grown. It started with classrooms and now I’ll speak to entire student bodies. And the questions, oh my, I wish you could see it! You’d be shocked by their frame of reference.

Someone usually will ask the question in the Q&A section of, “How many people have autism?” Before I answer I ask, “How many people here know someone, or knows someone that knows someone, with autism?” It never fails that at least 75% of the student body raise their hands.

In that moment, awareness and understanding is thrust into overdrive. They realize that autism isn’t something that is isolated to a cousin, a sibling, an uncle. It’s something much more prevalent.

After that, the level of compassion, empathy, and truly wanting answers is evident in the way the questions are asked. I always leave these presentations with a smile on my face and true hope for the future. I believe that if we want to truly change the world we have to reach the future. What better way to do that than to speak to tomorrow’s future?

Related Stories:

Meet Charlie and Max, twin boys with autism.

 

11 stories of hope about autism

Parker receives services at Easter Seals Bay Area's Early Intervention Autism ProjectIf you read the post I wrote earlier this month, you know the unemployment rate among people living with autism is very high. This year we’ll be celebrating the 25th anniversary of the Americans with Disabilities Act, but we still have a long way to go when it comes to hiring people who have disabilities. Even when a person with a disability has the same qualifications as someone without a disability, it can be more difficult for the one with a disability to get the job.

Few challenges are easy, and we have a long way to go, but when I start feeling glum about the statistics, I try to remember to check out these 11 stories of hope on the Easter Seals web site. All 11 people highlighted are on the autism spectrum, and six of the stories are about adults with autism.

Autism Awareness Month may be drawing to a close, but long after April is over Easter Seals will continue raising awareness of and advocating for the life-long services millions of families living with autism desperately need — including school-to-work transitions, employment support, residential and community support, and financial planning.