Micah Fowler, Actor With Cerebral Palsy, Stars in ABC's 'Speechless'

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Micah Fowler | Image via Twitter

Micah Fowler, who made his acting debut in “Labor Day,” is the new star of ABC’s series “Speechless,” which premiered Wednesday, Sept. 21.

Fowler, who has cerebral palsy, plays JJ, a nonverbal character, who, along with his family, faces the everyday challenges of having additional needs. Minnie Driver (“Good Will Hunting”) plays Fowler’s mother, John Ross Bowie (“The Big Bang Theory”) plays his father, and Kyla Kenedy (“The Walking Dead”) and Mason Cook (“Spy Kids”) play his younger siblings.

In an email, Fowler told The Mighty:

I am honored to have the opportunity to play the role of a down-to-earth normal teen living with the challenges of cerebral palsy, and I am thrilled to represent the millions of people living with special needs. In real life, I live every day conquering challenges brought on by cerebral palsy. In addition to the physical challenges, one challenge I have noticed is that sometimes people who have not met me, seem uncomfortable around me. I hope as people watch “Speechless,” they get to know JJ as a very normal person, to the point that the don’t even see the disability. I specifically hope to bring a huge amount of public awareness to cerebral palsy and most importantly, my hope is that the show will make people less uncomfortable around people with disabilities and more encouraged to interact with them, to look beyond the physical or other limitation and see the real person, the heart, the personality, the love and yes, even the humor. 

“It’s wonderful to see Hollywood bringing us a story about disabilities — and doing it as a sitcom! Certainly a life of disabilities has challenges, but perhaps the greatest challenge is getting others to see the many moments of normalcy,” Richard Ellenson, CEO of the Cerebral Palsy Foundation, told The Mighty in an email. “I’ve been fortunate enough to have read the wonderful pilot script, and it is honest, endearing and fun. And it shows the exasperation a person with disabilities feels when other see difference instead of similarity.”

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What I Would Tell a Child Who Asks Me Why I Talk Funny

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If a little kid ever asks me, “Why do you talk funny and move funny?” I hope I respond with this much class:

“You know, I’ve asked that question a lot, too. When I was your age I wanted to be just like the other kids. I wanted to talk as fast as them. I wanted to be understood as well as them. I wanted to be the one scoring the points instead of getting hit in the nose with the basketball. You know?

Mighty contributor, Jason Freeman, when he was in third grade.
Mighty contributor, Jason Freeman, when he was in third grade.

What I slowly discovered is that wanting to be like Tommy, Joey or Dan only took me farther away from me.

Can you imagine spending your life worried and not playing because you wanted to have 10 arms instead of two. That would be goofy, right?

One of the most powerful things in life is to learn to do your best with what you have. If you spend your life wishing for the 10 arms, you will likely never do all you can with two.

I finally have learned to love my voice and coordination and to do my absolute best with them. And you know what, life is so fun! Now, I do the things I want to do instead of being afraid to do them.

As you grow, you likely will find something you wish were different about yourself. Everybody does. That’s OK. This makes you unique. And that’s perfect.”

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Peter Byrne, Man With Cerebral Palsy, Gets Customized PlayStation 4 Controller

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Peter Byrne loves playing video games, but after recently purchasing a PlayStation 4, the avid gamer, who has cerebral palsy, was having difficulty using the system’s controller.

“When I play, I would hit the touchpad with my hand,” Byrne, 21, told News 12 New Jersey. “It’s very sensitive, [so] it would pause the game.” Byrne,of South Amboy, New Jersey, contacted Sony about the issue, and the next day, a PlayStation employee named Alex Nawabi responded.

Nawabi told Byrne he was going to take on the matter “personally and not on behalf of PlayStation,” Byrne wrote in a post on his Facebook page. After exchanging a few emails, Nawabi told Byrne he wasn’t able to come up with a solution, but he was still going to send Byrne a PlayStation goodie box.

On March 29, Byrne received a package from Playstation. In it was a letter from Nawabi — along with a custom PlayStation 4 controller. Byrne was stunned — Nawabi admitted he wanted it to be a surprise, hence why he fibbed about the controller in their previous correspondence.

“I never in my wildest dreams expected to receive a modified controller from PlayStation,” Byrne told The Mighty. “When I wrote my initial email I honestly thought they would just make note of it and maybe address it in the future. When I received the box I got choked up because seeing he spent 10+ hours, breaking 3 controllers and a bit of frustration to make the controller was amazing. I honestly was surprised he went above and beyond what I expected.”

Byrne shared Nawabi’s letter on Facebook, along with a photo of the modified controller:

I figure I share this story with everyone because it is too good not to share! When I use the PlayStation 4 controller…

Posted by Peter Byrne on Tuesday, March 29, 2016

 

Byrne wrote:

I figure I share this story with everyone because it is too good not to share! When I use the PlayStation 4 controller my game constantly pauses because my left hand hits the touchpad which is frustrating for me. Around two weeks ago, I decided to message PlayStation support and they gave this email address and said tell them my issue and wait for a response. A man by the name of Alex Nawabi from PlayStation messaged me and told me he was taking my matter personally and not on behalf of PlayStation. I explained to him my problem with a controller as well as my condition of cerebral palsy. I even had to give him a visual of what my left hand looked like gripping the controller. After a series of back and forth emails. Mr. Nawabi told me he was ordering some parts to come up with a solution for me. He emailed he last week saying that he tried to come up with a solution but it didn’t work. However, he would send me a PlayStation goodie box anyway. I received that box today and inside was the modified controller especially made for me and this letter. I honestly got choked up reading the letter as I did not expect anything like this to happen. Mr. Nawabi really cared about my situation and did this on his own time to make my experience better. I honestly can’t thank him enough for everything he did for me. Thank you Mr. Nawabi it really means a lot too me!

“He said that it’s the first time he’s ever done something like this,” Byrne added to News 12 New Jersey. “He did more than I ever expected.”

h/t Channel 9 News Australia

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What I Feel Is Missing From the IEP Process for Children With Special Needs Today

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In my work as an occupational therapist, I can’t help but think of my childhood growing up with cerebral palsy — my education and all of the professionals who helped me get to where I am today. I also can’t help but realize how different my experience was than it is for the students I service today. I had to really think about this because in some ways, I think things are better for kids today. My colleagues and I take pride in our professionalism in the school setting, and that is a good thing.

In today’s school setting, therapists are focused on data, respecting privacy, wording legal documents appropriately, and always finding the least restrictive environment. By nature these professionals are smart, compassionate, nurturing and strong communicators. Did I mention dedication to the jobs they do? It’s through the roof! Schools and educating the next generation is a business. This is a good thing, because more kids with disabilities are mainstreamed and receiving an education with their peers than ever before in history. There are no more state facilities, and parents more often than not attempt a public education rather than leaving their children with medical conditions or disabilities at home. The phrase “It takes a village” describes what occurs among my colleagues every day.

Growing up, it was very different. Individualized education programs (IEPs) and the laws that formed IEPs were just born. For me, having this new idea of an IEP and a mainstreamed education was a blessing. I had an experience that I wish all of my students and their parents could have. An IEP was never a threat or something a lawyer or advocate should attend. HIPPA and other privacy laws did not exist. I really feel like this allowed the therapists and teachers to practice what they preached. Every day they focused on strengths and attributes they realized they had in their own adolescences. By nature they were smart, compassionate, nurturing, strong communicators who were incredibly dedicated.

Those qualities shone through to assist my parents and helped me grow and flourish. Their training was in anatomy of the body, human and child development, and how to rehabilitate. They had individuals who were trained colleagues to write reports and schedule one IEP meeting a year for each student. My team meetings were held in restaurants, my backyard, the auditorium of my ballet recitals, at church and even in a horse barn. The team meetings are still occurring after 33 years. I know, it’s strange. Who would want to document one kid for 33 years? Maybe, just maybe the data that’s been collected is that with a supportive educational environment, I graduated college and have maintained employment.

Kimberly Sharpe painting
Kimberly.

Since I was a child, there have been positive advances in medicine, rehabilitation and technology, and mainstreaming. I would be saddened if those were lost, but I must also ask, where’s the balance? Although I realize that not every therapist can keep track of their kids for 33 years, our therapists, teachers and aides need the opportunity to use their intelligence, dedication, compassion, and ability to nurture and communicate at all times. They can’t be at their best when they’re required to attempt to create a business-like atmosphere instead of focusing on their strengths.

Follow this journey on Confidence Earned.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Pain of Being 'the Girl Who Walked Funny'

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Growing up, I really never thought about how much having cerebral palsy (CP) affected my life. I was smart (a straight-A student except when it came to any subject involving math) and had a great personality (both of those still apply). Now, looking back, I was that girl: “the girl who walked funny.”

young girl with pig tails smiling
Nicole as a young girl.

The one who got bullied, teased and stared at because she walked like a “freak.”

The one other kids didn’t want to pick to be on their sports teams.

The one who was an easy out in dodgeball.

The one who couldn’t climb the monkey bars on the playground.

The one who had to have a pinch runner because she couldn’t run fast.

The one who dreaded P.E. because she always got teased and couldn’t do what the other kids could do. She had excellent hand-eye coordination and loved sports.

The one who was horrible at hopscotch because she couldn’t hop on one foot.

The one who couldn’t go roller skating with her friends, and if she did, had to stay glued to the wall (or hold onto someone’s hand for dear life) so she wouldn’t fall.

The one who didn’t go to her best friend’s bar mitzvah because she didn’t want to be the girl in a pretty dress who walked funny. But that’s not what she told him.

The one who didn’t get asked to dance at prom by anyone interested in her. Her guy friends danced with her to be nice.

The one who always lagged behind while walking with family and friends, no matter how fast she walked, trying to catch up.

The one who didn’t enjoy going trick-or-treating because of all the walking.

The one who couldn’t ride a two-wheel bike because she “didn’t have the balance.”

The one who got up at 5 every morning so she could walk the two blocks to get to the bus stop (and then transfer to another one) to get to Seattle University. She didn’t like struggling to walk and sometimes run to make it on time, but she didn’t know there was a surgery that could help. She found out about it by accident decades later. She was never late for the bus — or for class.

These are just some of the reasons I’m so passionate about selective dorsal rhizotomy (SDR) surgery. If I’d known about SDR decades earlier, many of my life’s pivotal moments could have had a different ending.

Now, they do.

This post originally appeared on Bare Your Naked Truth.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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31 Facts for Each Day of Cerebral Palsy Awareness Month

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I have cerebral palsy (CP), and until I started advocating for selective dorsal rhizotomy (SDR), I was unaware March is Cerebral Palsy Awareness Month or that March 25 is National Cerebral Palsy Awareness Day in the U.S. every year since 2013, when a resolution was passed in Congress. I also didn’t know that World Cerebral Palsy Day is celebrated each year on the first Wednesday in October.

Cerebral palsy is the most common childhood motor disability, yet we rarely hear about Cerebral Palsy Awareness Month or National Cerebral Palsy Awareness Day in the news. Why isn’t the media paying attention? In an effort to change this, I — along with many of my friends and fellow CP advocates — have been posting facts, pictures and videos on Facebook and other social media sites throughout the month. Our goal is to educate, raise awareness and paint the world green for CP. I wrote to President Obama, and the White House responded!

For each day in March, Firefly shared a postcard with a fact or statement about CP. Here are the 31 days of Cerebral Palsy Awareness Month, according to Firefly:

  1. “Cerebral palsy isn’t contagious. Relax.”
  2. “Cerebral palsy is caused by the bit of your brain that controls your muscles.”
  3. “Over 90 percent of cerebral palsy cases are caused pre-birth.”
  4. “Cerebral palsy doesn’t necessarily mean learning disabilities. People with CP often have an equal or better IQ than everyone else.”
  5. “Most people with CP have a similar life expectancy to everyone else. We’re not leaving anytime soon.”
  6. “Cerebral palsy doesn’t mean never walking. Many can, many will.”
  7. “Cerebral palsy can impair communication, but we find ways.”
  8. “Kids with CP are still kids. Nothing more, nothing less.”
  9. “About half of kids with CP are born prematurely.”
  10. “There’s no cure for cerebral palsy yet. But nobody is giving up.”
  11. “People with cerebral palsy can lead completely independent lives.”
  12. “Many kids with cerebral palsy can, will and should go to mainstream schools.”
  13. “Cerebral palsy doesn’t always save you from a stressful, high-pressure job.”
  14. “Cerebral palsy doesn’t necessarily improve or worsen on its own.”
  15. “There’s nothing ‘wrong with me,’ I just have cerebral palsy.”
  16. “You’ll see many competitors with cerebral palsy in this month’s winter Paralympics.”
  17. “There are four types of CP: spastic, dyskinetic, ataxic, and mixed.”
  18. “Cerebral palsy is the most common childhood disability.”
  19. “CP affects about 17 million people, equivalent to everyone in the Netherlands.”
  20. “Around 350 million people are connected to someone with CP.”
  21. “Every case of cerebral palsy is as unique as the person who has it.”
  22. “One in every 500 babies is diagnosed with CP.”
  23. “Two-thirds of kids with CP can walk.”
  24. “Four in five kids with CP can talk (some too much).”
  25. “Only one in 10 kids with CP have severe visual issues.”
  26. “CP can affect all limbs or just some of them.”
  27. “Parents raising a child with CP do not get the huge financial support many people think.”
  28. “One child every hour is diagnosed with CP.”
  29. “Three in four kids experience recurring pain as a result of cerebral palsy.”
  30. “Most people with cerebral palsy don’t want sympathy, they want opportunities.”
  31. “Raising a child with CP isn’t the parenting journey I expected, but I don’t resent anyone else’s.”

Visit Firefly’s Facebook Page to view the complete postcard gallery.

For people living and thriving with cerebral palsy, spreading awareness is important every day. It doesn’t stop once March is over. You can help by sharing this post. And join us on World Cerebral Palsy Day on October 5.

This post originally appeared on Bare Your Naked Truth.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Facebook / FireflybyLeckey

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