Being able to move and communicate with the world has long been a major hurdle for children living with severe physical disabilities. Thought cognitively capable, they have few ways of expressing themselves to, and moving about in the outside world. However, advances in computer-based technology have allowed researchers to find innovative ways to help liberate these children, letting them interact and contribute with the wider society.
One of these researchers, Eric Wan, currently working on his Masters in Electrical, Computer and Biomedical Engineering at the University of Toronto, spends most of his days in the paediatric engineering research wing at The Bloorview Research Institute. His work involves designing new ways to improve the quality of lives of children living with severe disabilities.
He started programming when he was eight years old and since then, he enthuses, it has been his passion. “I really love it."
His zeal is apparent and fruitful. As part of his undergraduate thesis at the University of Toronto, Wan created software for an award-winning ‘hum-activated’ wheelchair. A child powers the wheelchair by simply making high- or low-pitched humming sounds. A vocal chord vibration sensor distinguishes between the different pitches to change direction. A major advantage of this wheelchair is that it drowns out unnecessary background noise such as street traffic or voices of people near by.
For Wan, the purpose of his work is personal: paralyzed from the neck down since he was 18 years old, he now uses a wheelchair to navigate his world. “I really understand that a lot of children with disabilities are in need of such a way to gain back control in their lives or even find ways to be able to control the environment or communicate with others.” Wan controls his wheelchair by the ‘sip-and-puff’ method. He tilts his head lightly to sip liquid from a long straw attached to his wheelchair. By varying the pressure with his lips, he softly sips the straw to move forward. To move backwards, he sips harder, and puffs into the straw at slightly different pressures to move the chair left or right.
Vast technological improvements such as this are not restricted to the wheelchair, first introduced and little changed since the 1930s. The digital age has also made possible new ways for children to communicate, when body gestures and words are not possible.
“Technology favours people with disability in some ways because there are now these alternate modes of interaction,” Dr. Tom Chau, PhD, Wan’s supervisor, senior scientist and Canada Research Chair in paediatric rehabilitative engineering at the Bloorview Research Institute. One way children can interact with their environment is through music, and Dr. Chau's research team has created a new tool for children to do just that.
A simulated musical fantasy
It is his lab’s greatest acme: the Virtual Music Instrument, an interactive web-cam based system that lets children with a range of physical disabilities play music. This past September, the device won a da Vinci Award for the most innovative, adaptive, and assistive technology improving the quality of life for people, regardless of ability.
The Virtual Music Instrument [VMI] is more exciting than its namesake suggests. The software contains an eclectic mixture of ‘virtual dots’ that appear on a large television screen. Each is a different shape and colour, and generates a unique sound: from piano and guitar notes to chirping birds. Depending on the level of the child’s disability, using the right combination of hand, arm, eye, tongue or head movements, a child can produce his own music. A web-cam sits on top of the large screen, allowing a child to watch himself immersed into a simulated musical fantasy. This feeling of being “on stage in the television” instills a sense of success in the child, allowing him to imagine himself as something more than his disability, says Andrea Lamont, Music Therapist at Holland Bloorview and one of the instrument’s co-developers. “For kids who have a disability, sometimes that opportunity for play and role play is gone. It’s not accessible. The VMI opens that up again.”
Improved self-esteem was one of the benefits the VMI had on kids with cerebral palsy, in a qualitative study Lamont conducted in 2005.“The VMI lets kids try on the idea that maybe I am a musician, maybe I do have something to say, and maybe it doesn’t have words and that’s OK,” she explains. “But I’ve made something. I’ve performed something. So it’s a genuine pure expression of self.”
Lamont’s study also showed that the instrument encouraged motor movement, auditory awareness, and cognitive skills, such as learning how to do new things.
Tapping into a child’s emotions
In addition to more accessible musical instruments such as the VMI, technology is also changing the landscape of interaction to the point that even severely disabled youngsters can communicate with the world.
“We’re so engrained in understanding speech and gestures, but when we take those away we’re kind of left dumbfounded as to what is happening,” says Dr. Chau. The focus of Dr. Chau’s work is a branch of paediatric rehabilitative engineering called access innovations. It involves using technology to tap into ways to interact with children who show no outward signs of intent- mainly kids with very little motor control or inconsistent facial expressions.“Our fundamental belief is that as long as the child is cognitively capable, then the body is communicating. It’s just that we haven’t been tuned into this other means of communication.”
Subtle body cues such as temperature is one way children can reveal their intention. Body temperature varies when we experience intense feelings, like happiness or sadness. Every time we experience an intense emotion, we radiate infrared light from our skin. Infrared imaging devices can capture and measure the infrared, allowing engineers to read a child’s mental or emotional state. Dr. Chau’s research has developed a system that can decode these emotions in severely disabled children with up to 80% accuracy.
“We show you pictures that you react to, and, by looking at your facial temperature distribution we can actually tell what type of reaction you are having – whether you are responding positively or negatively,” he explains.
Is that from X-Files?
Another way to decode a child’s intentions is by reading their thoughts - a concept that may seem X-File-esque, but not as sci-fi as it sounds: researchers can already detect brain activity by measuring the amount of blood-flow in the brain.
When we think or experience an emotion, our brain needs more oxygen. As the brain guzzles more oxygen, levels of hemoglobin start to spike up. Since oxygen absorbs light at a specific wavelength, researchers can detect when a child is experiencing a thought by shining light on their forehead to measure the amount of hemoglobin. This protein acts as a ‘physiological switch’ turning up or down, depending on the level of brain activity.
Dr. Chau’s team is creating computer programs that exploit the hemoglobin physiological switch. One application is a computer-based mental activity task: controlling the size of a ball on the computer screen using thought and biofeedback.
“Using the hemoglobin activity measure, the child can make the ball grow or shrink by their thoughts,” says Dr. Chau, explaining that by watching the ball change on a computer screen as a result of his own mental processes, he can learn to manipulate the ball. The child does not have to specifically think “shrink” or “grow,” but can have more generic thoughts.
“For instance, a child can sing a song, and the ball grows,” says Dr. Chau. “We can tell mental arithmetic and other types of mental activities.” This application is currently in the testing phase and according to Dr. Chau, is so far “looking very promising” as children can learn this activity very quickly.
Idealism is necessary for technological advancement
Some have called Dr. Chau idealistic but he doesn’t let the pejorative sway him: “Impossible has never been in my vocabulary. I think the evidence that we’ve been able to generate has further fuelled that optimism and idealism. Our goal is to equip every [severely disabled] child in Canada with a means of communication.”
After all, quixoticism is the hallmark of ingenuity. “In my mind the possibilities keep growing in terms of what we can do with technology.”