Positive 6 Creative

Rosario with Clara from Portugal Telecom Foundation and Kristin with Wireless Reach

Here’s a question that many of us have pondered: “If I were struck down by an illness or in an accident that rendered my body completely immobile and left me incapable of even breathing without machines, would I want to live?  And what if I were so disabled that I couldn’t even speak to ask for something or tell my loved ones how I felt about them?”

I know I’ve answered those questions quite cavalierly with a resounding “no way” nearly every time I’ve considered them.  Most healthy and able bodied people that enjoy an active and “normal” life answer similarly.  Well – I feel a bit foolish and very naive today after having visited the home of Rosario, a severely disabled woman with Cerebral Palsy.  She’s taking part in a program with Portugal Telecom Foundation and Wireless Reach that affords her the opportunity to speak to her family and friends and explore the world via the internet.

Now I had seen video and photos of Rosario in her chair with the breathing tubes in her neck.  I’d seen how she can only move her eyes and partially her face and knew that she did not have enough command over her own body to even speak. So I was prepared for a convalescent hospital type of experience.  Bracing for a terribly depressing situation – my emotional guard was up and I was in full work mode.  It’s a sort of stoicism you learn early on in this kind of work when you have to remain objective and clear-headed enough to get the work done in the presence of live tragedy.

We were warmly greeted and welcomed into Rosario’s 3^rd floor apartment by her daytime caregiver, a kind eyed Portuguese woman in an apron and house shoes looking to be in her early 40’s.  She led us through the kitchen and into the living room where Rosario spends most of her time.  It’s when I first saw Rosario that I immediately realized that my emotional bracing was completely unwarranted.

Rasario's cat keeps her company

There she sat in a fairly reclined position. Pillows stabilized and comforted her head, brightly colored fleece blankets kept her warm and a cuddly snow white cat sat in her lap keeping her company.  The ticking and whirring of the respirator was the only sound in the room. Rosario did not turn to greet us.  She is not capable of such a simple motion.

The calm silence was broken with a synthesized female voice welcoming us in clear and easily understood Portuguese.  Well – I have to take their word on it as I don’t understand a lick of Portuguese.  But I am quite familiar with speech synthesis, and this sounded amazing – not at all robotic like a Kraftwerk album, but rather quite human. Where did that voice come from?  Rosario.  Rosario’s “Magic Eye” equipped laptop to be precise.  She could hear us entering and commanded the computer to speak for her. But how can she operate a computer when she can’t so much as move her head to look at us?Enter “Magic Eye” – a mind-blowing technology that you have to see to believe.  No pun intended.

Rosario’s computer is equipped with a camera mounted below the monitor and two infrared sensors that work together to track her eye movement across the laptop’s screen.  The curser, typically moved with a mouse, is now moving wherever she looks.  Mouse clicks are executed with a series of deliberate blinks of the eye.  With the aid of specially designed software, she can type, select words and make the computer speak for her.

Whoa.

Magic Eye equipped laptop with Qualcomm 3G Wireless Internet Connection

Until having this technology, Rosario could only communicate through eye commands that amounted to a simple yes or no answer.  Her family had to guess what she may be thinking and wait for a confirmation to see if they were correct.  Rosario, who’s mind is still as sharp as a tack, had no voice of her own.  This bright, thoughtful and very funny young woman had to rely on single word commands just to try and tell her 9 year old son that she loved him.  Now she simply glances around the screen, blinking every couple of seconds to select a letter or word, and out comes her complete thoughts in clear Portuguese.  She has a blog which she writes in daily and she even wrote a book.  SHE WROTE A BOOK!!!  Incredible.

Rosario with guests in her home outside of Lisbon

Our visit with Rosario lasted only about :40 minutes.  In that time, she told us about her life and how the technology has changed pretty much everything for her.  She made us laugh with her wonderful sense of humor.  We saw her not as a sad disabled person waiting to die, but as a strong-willed woman bravely taking on unfathomable challenges and appreciating every moment of life.

I quietly packed up my gear as everyone said their goodbyes.  Rosario had other guests waiting to see her – she’s incredibly popular!  As we left the room, Rosario’s unmistakable synthesized voice called out something in Portuguese.  Her caregiver laughed and with a big smile turned to us and translated, “come by anytime – the one thing about being in my condition is that I’m always home!”  We all laughed, said goodbye again and made our way back to the car.  It was an afternoon I’ll never forget.  Thank you Rosario!

- N