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.

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Anonymous said...

Incredibly amazing story.

Let's imagine a world where we use this remarkable technology to help out all persons with disabilities.

Let's imagine and believe!!

thejoereview said...

Wonderful Technology. This is truly amazing.

Pierre said...

Anybody believing that ‘we’ have nothing to learn from ‘them’ should be informed that it required a miracle of modern technology before ‘we’ could learn from a person with Autism that "speaking isn't what is important - communication is."

What delicious irony, along with mind boggling empowerment, and encouragement for persons with special needs.

Fabulous blog by the way. Love the new header too.

Maureen Lee said...

Thank you, all, for your feedback! Anonymous, In 1983, someone 'imagined' what it would be like to hook the brain up to a computer and relay their thoughts onto a computer screen. In the 21st century, someone believed it was possible. I agree: Let's continue to keep the faith and imagine that anything is possible!

Betty, I couldn't believe that such a thing was possible. According to 60 Minutes, they're working on inserting chips directly on the brain, so who knows how this will change the lives of the intellectually and physically disabled!

Thanks, Pierre, for your kind words. If you notice, the header mirrors the one on the Ideal-Way site (

datri said...

My daughter is four and nonverbal (she has Down syndrome and autism). The whole communication thing is so frustrating. She's able to point at pictures for concrete choices, but trying to figure out things like if she's crying because she's actually hurt or if it's a sensory thing is challenging. Hoping technology continues to improve so I can find out what she thinks!

Maureen Lee said...

It must be very challenging and frustrating trying to determine what your daughter is feeling, every moment of the day. Carly's father shared your frustration, for she is unable to speak, and he was afraid that they would never know what was going in their daughter's life.

Scientists are continuing to work on this, hoping to bridge the gap between those who cannot speak and their loved ones. Maybe one day, your daughter will do as Carly did: sit down at a computer and slowly type what is in her heart!

Chatty Crone said...

I am so glad you found my Blog and wrote me - because it led me to yours! Your Blog has hit things very near and dear to my heart. Thank you.

Maureen Lee said...

Thank you for your kind words! Your blog was a real find for me, and I have recommended it to all my friends. Your blog is a much needed shot in the arm, providing wisdom, encouragement and humour!

I have added it to my blogroll, under 'interesting sites'.

yvonne said...

this blog has to be one of the best written on the internet. fabulous content with lots of variations on the theme of intellectual disability.

Anonymous said...

I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


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Don Yeo said...

How appropriately wonderful that Jenn Lee and Pau Abad have accepted “handing over the reins of Just Show Up” from Maureen Lee!

Each of these dedicated Ideal-Way volunteers meets the qualifying criteria: “exceptionally talented”. The synergy from their individually different backgrounds and perspectives will surely deserve continuing widespread interest in this great blog. I can hardly wait.

Thank you, kind ladies, for bringing an inspiring Christmas gift to Ideal-Way, its clients, and to loyal followers of “Just Show Up”. Carpe diem.

Don Yeo, CEO

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