Tuesday, November 25, 2008

Just Show Up is Under Construction

I'm handing over the reins of Just Show Up to an exceptionally talented crew at Ideal-Way.

Please, if you have a moment, we would appreciate your ideas, comments, or suggestions on what to include in future entries.

Thank you, all, for taking the time to visit Just Show Up. I've enjoyed the whole blogging experience - especially the wonderful conversations I've had with you, the reader! - and I'm grateful that we have a dedicated group of people who are eager to wield a paintbrush, scalpel, and carving tool. I can't wait to see the refurbished Just Show Up!

Sunday, November 9, 2008

Brain Power

The other day, my husband and I decided to play hooky. It was a perfect day - a robin's egg blue sky, with faint smudges of cloud - the kind of day that makes it easy to be grateful. As we chatted, reminiscing about the first time we met, it struck me that except for a couple of times in my life, I have always possessed the power of speech. Speaking has always been as effortless as breathing, and I was suddenly filled with a deep gratitude for this gift.

Well, no doubt my epiphany was partly the result of reading 'My Stroke of Insight', by Jill Bolte Taylor, a moving account of one woman's journey into a "world between worlds." In the space of four hours, the author was unable to speak, read, write or recall any of her life. As Taylor said, her stroke essentially left her severely mentally ill, without the ability to articulate her thoughts or feelings to the outside world.

A few months ago, I watched a video about Carly, a severely autistic and developmentally delayed teenage girl, who up until a couple of years ago was unable to communicate with the rest of the world. Unable to speak, she took matters into her own hands, and slowly began to type her thoughts into a computer. The computer was a portal into a world where communication is possible. For a girl who had never uttered a word in her life, this was freeing.

Carly revealed to the world how it feels to be autistic. For the first time, Carly was no longer being talked at - she was taking the reins and sharing her story. Carly's father expressed gratitude that they were able to provide a means for her to not only speak, but communicate with others. Until then, no one around her knew how she felt about anything. Why she habitually hits herself, or makes odd noises, for example. Her family members were desperate to get a glimpse into Carly's interior world. Typing slowly, she revealed how she wanted to be treated, and explained that "it's hard because no one understands me." The computer became her voice and the message she sent was simple: Never give up.

Last Sunday, I thought of Carly as I watched 'Brain Power,' a segment on 60 Minutes. At 40, Scott Makler was diagnosed with ALS. Unlike Carly, Scott is unable to type, but just like her, he is unable to speak. Now, believe me, I know as much about neuroscience as I do football (read, next to nothing). So I couldn't quite wrap my mind around the sight of a man seated in front of a computer, wearing a cap studded with white circles, eerily reminiscent of 'Brainstorm'.

Scott Makler's brain was directly connected to the computer, and the white circles (electrodes) picked up faint electrical signals from his brain and relayed them to the computer. The computer flashed random letters on a screen, and Scott concentrated on each letter, finally creating whole sentences. The computer revealed Scott Makler's thoughts, allowing him to once again communicate with those around him. His wife said, "he's happier now." This new technology has given him back his independence.

It begs a question: What could this new technology mean for an intellectually, as well as physically disabled person? It saved Scott Makler's life, literally. Before having his brain hooked up to a computer, Scott had made a decision. He would never use a ventilator to help him breathe. Now that he is able to go to work, and communicate his needs, wants, and dreams to his family, he is on a ventilator. "I can communicate with them now," was his answer when asked why he changed his mind.

As an autistic adult wrote in his blog, This Way of Life, "speaking isn't what is important - communication is. Besides the differences in the actual mechanics of speech, there are also the problems I have communicating my desires and needs. It is very, very difficult for me to ask a simple question such as, "Can you turn down the TV?" I might be near meltdown, due in part to a loud TV, but I can't actually communicate a need that I have. This is why developing communication is so much more important than developing speech."

Perhaps my gratitude for the ability to speak should also encompass all of the technology-based tools that exist at this time. For as Carly and Scott Makler observed, it's all about staying connected with those around you, by whatever means are available.

Watch CBS Videos Online

Sunday, November 2, 2008

So You Want to Be an Actor?

Kaleidoscope Theatre (taken from here)

Acting is one of the most competitive industries in the world. If you are developmentally disabled, and putting on plays for family and friends just doesn't cut it, then how would you go about making your dream a reality? Last week's post got me thinking about the type of person who simply won't take no for an answer. Diane Dupuy, founder of Famous PEOPLE Players, believes that everyone has a creative core within them just waiting to be mined. In 1974, she was determined to share her dream with the rest of the world. For six months, she battled against naysayers, who repeatedly told her, "You simply don't understand that they are not capable of doing the kind of work you describe."

Daniel Day Lewis said, "The thing about performance, even if it's only an illusion, is that it is a celebration of the fact that we do contain within ourselves infinite possibilities."

Gail Williamson, the Executive Director of the Down Syndrome Association of Los Angeles, spends her downtime fighting for the rights of performers with Down syndrome and other disabilities. "You can't take 'no' as the final answer," Williamson said. And so, she set out to create an online service to locate talent with developmental disabilities. The Down Syndrome in Arts & Media Website "connect casting directors with actors, but event planners will be able to find public speakers and entertainers, set decorators will be able to find visual artists with unique one of a kind art, and publishers will be able to find poets and writers, all who have DS or other developmental disabilities."

Alliance for Inclusion in the Arts is working to increase awareness and "enhance opportunities for people behind the scenes as well, such as all the talented disabled writers, directors, editors, etc. whose talents often go unrecognized." One member said, "It's ambitious, but it's shocking we aren't better represented in today's world."

But if your heart is set on being on the other side of the footlights, there are avenues open for developing your gift. DramaWay, an organization based in Toronto, Ontario, provides innovative drama programs for those with special needs. Danielle Strnad, founder of DramaWay, was inspired to create a place where people of all abilities are encouraged to explore their creative potential. "Using dramatic techniques, participants are led down the paths of discovery. Participants are given the opportunity to engage in drama and other art forms." DramaWay helps aspiring actors to explore the process of creation, for it is the creative journey, itself, that leads to personal growth. They "believe that drama allows everyone the opportunity to connect with others in their community, and to learn about themselves while doing so." Workshops and structured sessions are offered, all in the name of improving social skills, increasing self-confidence, and enhancing communication.

In the U.K., The Kaleidoscope Theatre was founded almost 30 years ago, the first theatre company of its kind. The founders "have a passion for theatre, because they believe in high standards of performance and in quality of life and, above all, because they have a love and high regard for one another." Most of the performers have Down syndrome.

All but five of 41 cast members of Jerry's Habima Theatre, in Atlanta, Georgia, have developmental disabilities. One of the actors in this year's show said, "It's challenging every day to do things. But this shows people with disabilities 'you can do it.' " Don't take no for an answer.

For more information, go to:

Theatre companies:

Wild Swan Theatre

Performing arts organizations:

The Centre for the Arts in Human Development, Faculty of Fine Arts of Concordia University
Heart and Halo Talent
Performers with Disabilities

In the News:

Down Syndrome and the Acting Gene, BellaOnline
Film with Down syndrome cast tweaks taboos - “What Is It?"
‘Rising Stars’, L.A. Times

Drama Therapy:

Dramatherapy Network

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