An Avaz Megaphone Feature
In this day and age, we can enable or support anyone to communicate. Whatever be their specific or complex communication need, today’s technology has the capability to provide a solution. Once such game-changing solution is the eye gaze technology coupled with AAC.
In this edition of Avaz Megaphone, Aditi brings us a fictional account of how eye gaze and AAC can completely change a person’s life.
The Most Beautiful Eyes
Maya pondered over what she was doing. She was downloading the eye gaze sensor version of a popular communication app onto her daughter Sara’s tab.
Sara, her baby, who had come in to the world nine years ago, had the most beautiful eyes anyone had ever seen. Her eyes spoke volumes! And so did Maya and Kevin’s journey of raising a child with severe cerebral palsy!
Intensive physical therapy in the early years ensured that Sara could hold her neck upright. This was a vital survival skill. Sara could now eat the kind of food that most kids her age ate. And she didn’t have to worry about choking on it.
With time, it became obvious to Maya and Kevin that Sara may never walk. Hard as it was to accept, they looked around to find a wheelchair that would work the best for her.
Schooling brought with it challenges that were hard to deal with.
They heard the same refrain from all the schools Sara had been to… How and what do you teach a child who cannot use her hands to gesture at something? Let alone manipulating learning materials, she can’t talk either. How can we figure out if she is able to understand what is told to her?
But what about her mind that thinks? What about Sara, the person and her likes and dislikes? This would be Maya’s question at each new school. One that would be met with stoic silence. Their awkward glances saying loudly that they thought her Sara possessed neither!
Thanks to this attitude of schools, schooling turned out to be a kind of respite care. Maya’s mind was constantly plagued with thoughts “I don’t know a thing about Sara, the person! What gives her joy? What are her dreams?”
Over the years, she Maya had tried to have a conversation with Kevin about this. She realized that each time this came up Kevin maintained a strange silence. It was almost as if Kevin too did not believe in the existence of an inner world within Sara.
But Maya was a mother who did not believe in giving up. She was determined to find a way for Sara to express herself.
Her search took her to the social media handle of a popular communication app called Avaz. They now had an eye gaze sensor version for those with complex physical needs. She understood that the user would need some training to use the app with eye-gaze. Plus, the app needed to be customized to their specific needs. These aspects notwithstanding, the app certainly looked promising.
Three pictures would appear on the screen. The user is asked a question. The user would then have to train their gaze on the appropriate picture for the response. The app would read her gaze and speak out the picture that she focuses on as the response. And the best part? It did not involve the use of hands! This was something that Sara could surely work with!
Let’s Do This!
“It might actually help me understand my daughter better”, Maya mused to herself. She immediately checked to see if the product was available in her city. Her joy knew no bounds when she found out that not only was Avaz available, there were also professionals in her city who could help them. They would support the family with customizing the product. The professionals would also train Sara and the entire family on using the app. It seemed like a ray of hope, exactly the kind the Family was hoping to find.
“What are we going to accomplish by giving this to Sara?”, asked Kevin when Maya told him about the eye gaze communication product. Clearly , her husband’s thinking was not any different from that of the previous therapists, schools and the society at large. But Maya was legendary for her never say die spirit. She believed that there was more to her daughter than her disability.
Sure enough, Maya purchased the eye gaze sensor version of Avaz for Sara. And thus began Sara’s journey of finding her voice.
Baby Steps into Eye-Gaze
As with anything new, learning to use the app was taking time. Maya picked up a few activities and strategies to help Sara understand that the app could sense the direction of her eye gaze and speak out her choice for her. Sara began practising the activities, which were designed like fun video games. Maya soon realized that Sara was enjoying these activities thoroughly. It was a pleasure to hear her burst into into laughter and sheer joy, every time she got something right. It also reiterated to those around her that inspite of extensive physical limitations, Sara was capable of learning when provided with an appropriate medium.
With time, Sara learnt to communicate her needs with the app. She also began to make progress with expressing her feelings and emotions. Maya was happy with Sara’s progress. For the first time in nine years, she was beginning to understand the person her daughter was- sceptics be damned!
One morning, Maya found Sara in a particularly weepy mood. Something was not okay! Sara was prone to mood swings, but this seemed way more intense than usual. Maya decided to use Avaz to ask Sara how she was feeling. She brought the tab and opened the emotions folder and asked Sara how she was feeling. Sara gazed keenly at the pictures on screen and soon the app said ‘bored’. Maya was in for a surprise. She did not think that Sara recognised the feeling of boredom!
She then opened the folder that listed some activities and asked Sara what is it that she wanted to do. Sara took a long time fixing her gaze, but Maya waited patiently. After a while, the app said “Beach”.
Did Sara want to go to the beach? ! “Why not!”, said Maya to herself. After all, there was a ramp for wheelchair users in the largest beach in their city. It was time to try it out!
As Maya got Sara ready to leave and put her wheelchair into their car, Kevin asked her, “Where are you off to?”
“To the beach”, replied Maya.
“With Sara? But why?”, asked Kevin.
“Because she wants to and said so”, retorted Maya.
“Do you really believe that app is working and this is what she wants?”, asked Kevin.
“Clearly , I do. That is why I am heading to the beach now”, replied Maya as she drove off to the beach with Sara.
Maya watched Sara admire the beach sitting on her wheelchair. Her eyes were twinkling. She was shrieking in excitement each time a huge wave hit the shore. “Just like me, when I was nine”, Maya mused. Dabbing her moist eyes, she watched her daughter find joy!
Student & Writer
Aditi Sowmyanarayan is a sixteen year old who uses Avaz, a text to speech app, to communicate. She goes to Ishanya India Foundation, a special school in Bengaluru. Aditi is an avid blogger and an aspiring writer. She blogs on www.smallstepbigthought.blogspot.com
She can be reached on Instagram at writeaditi and on her Facebook page : small step big thought