THE PEOPLE HAVE SPOKEN

Donald Trump will be the next president of the United States. I spent the majority of today wondering what that would mean for all of us with disabilities. And, yeah, I cried. 

My tears were born out of fear and frustration. Fear that funding will be cut on services those of us with disabilities require to live independently. /Frustration that if the dire predictions of funds come to fruition, I will never get out of here. Disabled Americans currently living independently, may be forced to live in nursing homes. I don't wish my situation on anyone/ Disabled Americans deserve to keep the quality of life they now enjoy. 

.If I lived in Great Britain, I would not have been forced out of my home. I have been told that in Great Britain, people with disabilities are treated with respect and dignity. They are treated just like everyone else. 

I have begun looking at my options. Currently, the state pays for just six hours of attendant care,  You can get up to eleven hours, but that's difficult/ People more disabled than I am are living in apartments with assistance. I deserve a chance too. I will continue to explore my options and learn how others manage  I don't need to be in a facility. After meeting other people with disabilities who live in the community, I believe that now more than ever. 

I am not angry. I am not going to rant and rave. The people made their choice. Now, we have to work together to make this country the best nation it can be.

I am just going to remind the incoming administration that there are 57 million disabled Americans. We fight daily to be heard, to get the services we need, and to be treated equally. 

All I am asking for is a chance. That is all anyone with a disability wants. To be able to choose where and how we live, to be able to work so that we have a sense of self-worth and can be proud of the contribution we are making.  

I have said all of this before. I pray funding is not cut. Cutting funding will mean that people with disabilities don't matter. But we do matter. I ask one thing of the incoming administration. Please don't forget about the disabled community. Show us that we matter.

MY MICAH FOWLER INTERVIEW

Ever since the first episode of Speechless aired I have wanted to Interview Micah Fowler. Wait, that's not entirely true. I should have said, that ever since I wrote my first piece on the show last August, I have wanted to interview Micah Fowler.

The road to this interview began when I messaged Micah via Twitter. After countless emails to his agents, and with the assistance of entertainment reporter, Cassata, my interview was granted Thank you, Micah, for this awesome interview.

What do you like best about being on Speechless?

This really is a groundbreaking experience, a person with a disability portraying a main, lead character who has cerebral palsy on primetime television!  Growing up a huge television and movie fan, I couldn’t help but notice the lack of representation, the lack of “lead characters” diagnosed with disabilities. So the fact that I get to portray a lead character dealing with cerebral palsy is what I like best. It is so exciting for me to be able to show that people with disabilities are diverse, have personality and can achieve! The best part about being on Speechless is that I get to inspire people to follow their dreams and achieve

Who are some of the actors/actresses that you look up to and why?

I'm a huge Mark Hamill fan because I LOVE Star Wars and he brought one of my favorite characters to life and did an incredible job at it. He also voiced The Joker in the animated series Batman and I'm a big fan there as well.

Chloe Bennet is a favorite because she is such a talented actress and makes it seem so easy. I love her show, Agents of Shield, and have loved watching her portray Skye/Daisy/Quake. I met her once and she was so nice and down-to-earth. It's been fun to watch her grow on that show. 

I also really look up to my sister Kelsey. By the time she was 16, she had been in four Broadway musicals. She taught me the fundamentals of acting. It is because of her that I became interested in acting.

What was the audition process like for the part of JJ?

About two years ago, my agent asked me to send in a "personality tape" for an "untitled Scott Silveri project".  I put together a tape of me just talking about myself and joking around. Time went by and never heard anything else.  A year later, my agent called and said they had requested another personality tape for the same project, now titled, "Speechless". So I again put together a personality tape just talking about my interests and joking around.  A few days later the agent said the casting director was sending 6 scenes over.  I spent an entire Saturday putting together the tape of the six scenes. My parents verbalized all of the other characters' lines (off-camera) while I reacted to all of the dialogue on camera. My sister was at school, so my mom sent her the audition footage to upload to the agent. She texted my mom, "this is hilarious, he is totally going to book this".  How crazy is that? She called it.  The agent told us they loved the tape and would be in touch. About 2 months later, I found out I booked the role on the day of my 18th Birthday, BEST BIRTHDAY PRESENT EVER!!!

How difficult is it to portray a nonverbal character?

JJ uses a laser pointer and aide to communicate so I have to compensate physically by being extremely expressive with my facial expressions and body movements. It’s not hard for me to convey emotions, as I have always been a very expressive person. The challenging part is getting each expression just right, I mean conveying the exact emotions the scenes are making JJ feel and making his personality come through. My goal is to make sure the audience knows what JJ is thinking and feeling at all times. I think it is really unique that you get to know JJ without him ever speaking

Do you have any input on storylines or certain scenes that involve JJ?

Yes, my parents and I have shared many of our personal experiences with the writers; some have already been used in episodes we have shot.  I have also given input during filming certain scenes, input concerning JJ’s disability level and the equipment he uses.

What's it like hanging out with your TV family in between scenes? What do you do?

We laugh a lot while filming and in-between scenes we chat, share stories, talk about songs, movies, and television shows and even do magic tricks for each other. Kyla Kenedy and I sometimes sing and listen to music as well. She knows a lot of songs. Mason and I goof off quite a bit. It's a ton of fun!

 What do you think about your fans? What kinds of gifts have you received from your fans?

I have received such wonderful feedback from the fans. Before this all happened I didn't even have Facebook, Twitter or Instagram! Every day I get messages of support from people telling me how much they like the show. But the ones that touch me the most are from people with disabilities telling me I've given them the hope or courage to do things they never thought they could do.

In the long run, what do you hope to achieve with your career?

I loving acting and I would like to have a very long, diverse acting career. I hope that I can have opportunities to portray many different types of characters during my acting career. I love Mark Hamill and Michael Rosenbaum. (I'm a big Smallville fan too and Marvel, DC, pretty much anything superhero). My dream role would be to play a villain in a Star Wars movie

INCLUSION WORKS

October is National Disability Employment Awareness Month. The title of this post is this year's theme. There are approximately 57 million disabled Americans. We are the largest minority group.  

According to an article written for CNN Money, in July of 2015. " In the early 1990s, about half of disabled Americans were employed, according to Census data. Today that has fallen to just 41%. Some of the declines are due to an aging population. Older workers are more likely to have disabilities, especially physical ones." http://money.cnn.com/2015/07/26/news/economy/americans-with-disabilities-act-problems-remain/

Many disabled Americans. like me, want to work, but we are afraid of losing our benefits. There is no incentive to work because of the restrictions that have been placed on us by the government.

People with disabilities are more conscientious and appreciative than most non-disabled workers. That is because we know that we must prove that we can do the job that we were hired to do. If an employer is willing to make the reasonable accommodations that may be necessary so that a disabled worker can do their job effectually, the employer will find that hiring someone with a disability is an asset to the job, rather than a liability.

The best example of the postie effect of inclusion in the workforce can be found on the television show Speechless. Instead of hiring a non-disabled actor for the role of JJ DiMeo, The show hired Micah Fowler. As you know, Fowler, like the character he portrays, has cerebral palsy. He is a working actor on a hit sitcom. He is part of the cast. He is doing his job. He is contributing.

Micah has the largest trailer of any of the actors on the show. His trailer has a ramp to accommodate his wheelchair. He also has his own makeup chair on the back patio of his trailer.

Inclusion works. .Just give us a chance.












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SHE WENT TO VISIT THE QUEEN

Photo credit  We Love Soaps 

American television viewers will remember Emma Samms from her 80's television roles  Fans first saw her in the short-lived TV series, Models Inc.

Audiences remember her as  Holly Sutton, the con artist with a heart of gold on General Hospital. Holly won Luke Spencer's heart after his beloved Laura was presumed dead. Emma Samms made fans forget Pamela Sue Martin ever existed. She took over the role of Fallon Carrington Colby on Dynasty and The Colbys and made it her own.

In 1982, Emma co-founded The Starlight Children's  Foundation with her cousin, Peter Samuelson. Starlight has chapters in the United Kingdom, the U.S. Canada, Australia, and  Puerto Rico. http://www.starlight.org/

Starlight is a non-profit organization. Its mission is to brighten the lives of seriously ill children. The organization partners with other non-profits and children's health organizations to accomplish its goal. Starlight lessens a child's fear by bringing entertainment, innovations in technology, and education to them during their treatment or hospital stay.

Recently, Emma was awarded an MBE for her work with Starlight and other children's charities. She was made a  Member of the Order of the British Empire by Queen Elizabeth II at Buckingham Palace.  http://www.gloucestershirelive.co.uk/actress-emma-samms-receives-mbe-from-the-queen/story-29840301-detail/story.html

I met  Emma and her sister, Louise, in the '80s, when she played Holly on General Hospital. I never thought, when I wrote a fan letter to Emma that I would receive a reply. I received a handwritten note from Louise. That note started a friendship between Louise and me.  Louise and Emma invited me to the studio for lunch when we were on vacation in California. I have some lovely memories of that day as well as the day I attended Emma's fan club luncheon and year or two later. 

Life got in the way. Louise and I lost touch for many years. I always tried to keep up with what Emma was doing. Thanks to social media, Louise and I have reconnected. I love hearing about her life and seeing her photos. Facebook has bridged the continent between us. Twitter helps me stay connected with Emma. She and I have something in common now. She is a writer too.

Congratulations Emma, on your well-deserved honor. I loved seeing the photos.  I know that you will continue helping others an continue to d bring them joy. Louise, thank you for your friendship. Keep those photos coming. I am proud to call both of you my friends. 

And, It all started with a simple fan letter.





   

LET YOUR VOICE BE HEARD

Someone on Facebook asked me to defend my reason for supporting Hillary Clinton. Senator Clinton has brought disability rights to the forefront of her campaign, She is the first candidate to endorse The Disability Integration Act http://www.adapt.org/main.diamain,

The DIA was introduced by Senator Chuck Schumer. Its purpose is to ensure that people like me, who were forced to live in long term care facilities or other institutions be given the supports and services needed so that they may be integrated back into the community. ADAPT a grassroots organization, works tirelessly to ensure that the rights and freedom of people with disabilities are protected,  

You can read Senator Clinton's statement regarding the DIA here: https://www.hillaryclinton.com/briefing/statements/2016/04/06/statement-by-hillary-clinton-on-the-disability-integration-act/

No one who is not sick and has a good mind should have to live with limited rights and freedom. I can get out, but getting transportation can be a hassle. Getting aides to cooperate can be an even bigger challenge. I wish the state had contacted an independent living center about support services for me. Instead, they just dumped me here.  It's been two years. It feels like ten.

When I look in the mirror, I see a person with many challenges whose body has betrayed her. Recently, I visited the Starkloff Disability Institute.  Starkloff helps people with disabilities gain employment and be part of their community. I saw people with many more challenges than I have. I visited a gentleman's apartment. I learned how he manages caregivers so that he is safe. He works. He lives his life. I hope  Staekloff can help me too. starkloff.org

Someone on Facebook asked why they should vote for Hillary Clinton.. Donald Trump has mocked people with disabilities, insulted every minority group, and spoken about women as though they were less than human  He believes a woman's only purpose is to sexually satisfy men. 

I am not telling anyone why they should vote for one candidate or the other. The most important thing is to vote. Let your voice be heard.

I WANTED TO...

October 4, 2016, is Ballet Day at The Royal Opera House in London. A friend posted this video on my Facebook page. I was so moved by the video that I had to share it.  https://www.facebook.com/royaloperahouse/videos/10154170899857579

October 5, 2016, is World CP  Day/ 
According to their page on Facebook, "World Cerebral Palsy Day is a movement of people with cerebral palsy and their families, and the organizations that support them, in more than 50 countries. "

"Our vision is to ensure that children and adults with cerebral palsy (CP) have the same rights, access, and opportunities as anyone else in our society. It is only together, that we can make that happen."

World CP Day seeks to "Empower people with a cerebral palsy to have a voice about changing their world."

The video of Charlotte realizing her dream of participating in ballet is a perfect example of what World CP Day is all about.  Inclusion and acceptance.

There have been positive changes.  We still have a long way to go before we are truly accepted. I constantly have to tell any new aide I am grateful that there is nothing wrong with my mind. My limbs don't work the way they should. I hope the day comes when people truly see me as a person with abilities, not just someone with a  disability. I hope the day comes when people with CP aren't forced to be in nursing homes just because they need care.

I wanted to write something profound. I wanted to write what this day means to me and everyone with cerebral palsy. .I wanted to, but I'm not. Instead, I am going to encourage you to watch the video of Charlotte. I am going to encourage you to watch Speechless tomorrow night.  You can also catch up on by clicking  on this link..  http://abc.go.com/shows/speechless  Doing those two things will tell you so much more than I ever could.

HAPPY WORLD CEREBRAL PALSY DAY!

A BIG DEAL

I don't know how to write about ABC's new comedy, Speechless, without making it personal. The pilot is streaming now at www.abc.com It is available until September twentieth.  The show premieres on September twenty-first. 

Ever since watching the pilot., I have wanted blog about it. I started a post many times. They all sounded like a review. That's not what I wanted to write. I hope you read the piece I wrote about the show for The Mac Wire a few months ago. http://www.themacwire.com/abcs-speechless-not-your-typical-sitcom/ Writing a post about the show became a big deal in my mind. I wanted my post to be the kind of post that would make people want to watch. I wanted people to know what an important show Speechless is and why some reviewers are calling it "groundbreaking television." I was putting a lot of pressure on myself.   I shut down. I didn't write anything.

There are two reasons, in my opinion, to watch Speechless. Viewers will gain insights into what's like to raise a child with a disability. They will see a mother's fierce determination to give her child the best life possible while struggling not to neglect the needs of her other children.

The second reason to watch is  Micah Fowler, the actor who plays JJ DiMeo on the show. Like his character, Micah Fowler has Cerebral Palsy.  How cool is that?  He knows what it is like to have CP. He brings a certain realism to the show that an able-bodied actor could not.  

If there had been a show like this when I was growing up, it would have shown me that people with disabilities can achieve things in life. When I was young, we were not told what we could, do, only what we couldn't.  Today we have Speechless and Micah Fowler  to send a positive message to young people with disabilities/

I hope you'll watch Speechless. I hope it will get people talking. I hope it gives people a new perspective. 

Watch the promo below. Then watch the pilot.

Speechless. It's funny/ It's real. It's a very big deal.