This blog was guest-written by Mary Elizabeth McCulloch, social entrepreneur and founder of Project Vive. She’ll be guest-speaking during the “Social Entrepreneurs Using Tech to Solve Global Problems” session of the Women Rock-IT series on November 16th.
When I was 18 years old, I spent a year in Ecuador through the Rotary Youth Exchange program. A few months into my trip, I decided to volunteer at an orphanage in the Andes mountains in a village called Racar. This orphanage was specifically for children and adults with disabilities. I quickly noticed that the residents with cerebral palsy were quietly sitting by the windows.
With little experience dealing with cerebral palsy and complex communication needs (CCNs), I started asking them questions about what they liked. Getting no verbal response, I worked to establish ‘yes’ or ‘no’ answers using their vocalizations, facial expressions, and movements. I then asked binary response questions, prompting them to respond through their own unique way of communicating ‘yes’ and ‘no.’
And then it hit me hard. I realized that these people, in this remote town outside of Cuenca, were trapped inside bodies that wouldn’t allow them to communicate what their brains wanted to say. They each had likes and dislikes, dreams and nightmares; but no one had taken the time to ask them. The workers rotated on eight-hour shifts; while the residents were fed, taken to the bathroom, and washed, no one had established a reliable form of communication for the residents.
I was confused; why were people reluctant to help them communicate? Why were they seemingly forgotten in this society? Why were so many people with disabilities in orphanages? I was heartbroken.
Six years later, I realized there is a lot I did not understand about disabilities and the stigma that comes with them. In our world, 4.6 million people have cerebral palsy or ALS and cannot speak. Many people believe that if a person cannot talk, they cannot understand conversation, and therefore are unable to participate in society. This stigma exists in places like the Dominican Republic, India, Sri Lanka, and even here in the U.S.
It’s no surprise, then, that people with disabilities experience adverse socioeconomic outcomes, from low education rates and poor health outcomes to unemployment and higher poverty rates.
I recently spoke with Howard Mwagomba, a speech therapist at Sandi Rehabilitation in Malawi, who explained that people with disabilities are just not expected to be able to speak and are left by themselves to pass their days. Dr. Nimisha Muttiah, a senior lecturer of Speech & Language Pathology at the University of Kelaniya in Sri Lanka, mentioned that parents don’t understand why they should spend money on a child with disabilities when it can be used to help their non-disabled children.
These factors are multiplied when children with disabilities live in resource-constrained settings and low-income communities. In many places, because they lack any other option, these children are abandoned on church doorsteps and taken in by local orphanages.
When I returned from Ecuador, I began studying Biomedical Engineering at Penn State. I focused on developing a solution for people with disabilities to communicate, and learned about the field of Assistive Technology (AT). AT is any piece of technology that can be used to increase the functional capabilities of a person with disabilities. Devices currently taking advantage of AT range from wheelchairs to computers outfitted with advanced eye recognition software.
I knew I needed something that was low-cost, durable, and wearable to ensure independent communication. At the time, many solutions on the market were high-cost and high-maintenance, making them completely inaccessible to people in low-income communities.
And so my team, Project Vive, and I created the Voz Box, an affordable, durable speech-generating device (SGD) that takes advantage of digitization. The multilingual Voz Box system has two parts—a sensor and a device, which can be visually based, auditory based, or both.
We created sensors to fit the breadth of abilities people with neuromuscular conditions possess, including Bluetooth sensors that detect low-motor control movement in the finger, elbow, knee, foot, and eye. Our mission is to use the Voz Box to give access to the Internet of Things (IoT) to those who need it most—people with disabilities.
How can the Voz Box really help people with disabilities? The World Bank concludes that lack of access to technology creates barriers to participation by people with disabilities in economic, civic, and community life.
We believe that people with disabilities are natural born problem solvers. Arlyn Edelstein is a 71-year-old woman with cerebral palsy who shared her poetry for the first time out loud using the Voz Box last fall. In front of a crowd in downtown State College, Pennsylvania, she shared a poem she wrote titled ‘Unlocking Doors:’
Handicapped. All my life. I learned to get things done for myself. Over years of lots of thought. I gracefully arrived at the best ways possible. It isn’t easy setting my VCR programmer with my foot. Rather than using my hands. But when I hear that most people. Even those with high-paying jobs. Cannot master setting their VCR. I do feel fortunate. Being handicapped is not cause for me to feel sorry for myself. I just must take time. To solve the puzzle. Of how best to get things done.
Yes, that came from a powerful woman whose lack of a voice has created barriers for her to seek employment. Even with an English degree from Edinboro University, Arlyn struggled to find employment.
She is an amazing writer and has helped us with the Voz Box design; far beyond testing, much of our current beta comes from her feedback and helpful information she concisely wrote and sent to us using a computer and a handmade stick.
Research suggests that diversity will help us solve difficult societal problems. People with unique life experiences, different perspectives, and special abilities can help us tackle some of the world’s most pressing challenges.
What would the world look like if people with disabilities could contribute, advocate, and take advantage of the opportunities in our digital economy? We are in a new age of digitization that allows people with disabilities to participate in ways never before possible.
Just think; it is now possible to order a Starbucks coffee on your phone! That’s what these people want, to participate and be treated like people because they are people! Disability is natural. It always was and always will be a part of our world.
The Voz box will be able to empower this untapped population of natural global problem solvers. And we believe it all starts with a voice.
Take your first step in joining us by registering today for our session in the Women Rock-IT Cisco TV series, “Social Entrepreneurs Using Tech to Solve Global Problems.”