Whether sitting at the piano, strumming a guitar or drumming with whatever he can get his hands on, my son Joseph (above) makes music.
Joseph is seven years old and has cerebral palsy. Joseph is also non-verbal (so far), yet he has a voice: a computer-generated voice that is produced in response to the words he selects or types into his computer.
This technology that has become the greatest source of liberation for our son—liberating his ideas which are as uncensored, funny, sometimes hurtful, deep and poetic as any child’s.
This is where the story begins. In finding his voice, Joseph also found opportunity, friendship and music.
Paul Alcamo, Joseph’s senior kindergarten teacher at the Bloorview School Authority, recalls meeting Joseph at rehearsals for a student song CD he was producing, when Joseph was just in junior kindergarten.
“A very articulate, voice-device-using boy named Joseph told me that he couldn’t sing,” Paul remembers. “I was temporarily stumped to find a way to get him into the songs and encouraged him to use his voice in his way. The accuracy of the notes didn’t matter as much as he made a joyful sound with us. That didn’t sit well with this very soulful and intelligent boy. For close to six months that also stayed with me in the back of my mind.
“Joe was then placed in my class for his senior kindergarten year…At one point early in the year I decided to save some of the writings of this witty and profound child. As well, the nagging feeling that I had to find a way for his voice to make it into music stayed with me.”
Joseph’s teacher Paul approached his friend Adrian Moody, a producer at the Ashley Ingram School of Music, for help. And, for reasons I will never understand, Adrian agreed to meet with Joseph and our family.
The meeting with Adrian (AJ) at the studio was unforgettable. AJ was very warm and welcoming, treating us to a tour of the studio that was complete with gold records on the walls and photos of some of the biggest pop stars in the world who had recorded there. AJ and Joseph hit it off immediately. Both fed off the other’s enthusiasm and sense of humour, both completely fascinated by the other.
We finally entered the studio where AJ and Joseph would record together. I apologized for not having a clear musical idea or even a complete song and handed over Joseph’s lyrics for his song That Thing. AJ was immediately excited and optimistic that something special was about to happen, and proceeded to transfer Joseph’s lyrics, as spoken by his computer, onto one of the studio computers. Then he asked Joseph for more lyrics.
“Gimme something,” AJ said, and Joseph responded, typing new lyrics on the spot onto his computer. With AJ’s support and encouragement, Joseph delivered.
After all the lyrics were recorded, AJ demonstrated how he would manipulate the digital voice recording from Joseph’s computer, by making pitch changes and varying the length of his words to emulate a singing voice. It was of course a transformative moment.
There was lots of laughter, shouting and high-fives. Joseph's emotions ranged from disbelief to joy to immense pride and validation.
It was a moment where everything changed. I had never heard or imagined anything like it. In an instant, a world of possibilities opened up. In an instant a wall of limitation came crashing down. AJ Moody and Paul Alcamo had changed the world for Joseph and many like him who are sure to follow.
This is how AJ describes it:
“I had been trained to treat everyone in the studio as an artist, and I was determined to approach this project with the same level of care and professionalism. When Joey and his family arrived, I knew that I wasn’t just treating someone like a star: Joey is a star. He was engaged, energetic and inspiring to work with. Using technology and software we often take for granted in the studio, I was able to work with Joey in creating a song that gave him his musical voice. I had no idea of the impact it would have on him, his family, his peers, or myself.
“Joey taught me that expression is not about what we see or what we expect, but truly about being free to express what lies directly in our hearts. In fact, the result was so powerful to me, I quit my job and founded a nonprofit organization—called Music Without Barriers—to help Joey and people all around the world find their voice, access music no matter the barriers, and give everyone the chance to shine.”
Joseph presented his song That Thing at the Breaking the ICE (Independence Community and Empowerment) conference in Toronto in 2012. At just five years of age he introduced it by saying he “wrote it to get rich” and was “still waiting,” to uproarious laughter. When his song played, it brought the roof down.
What Joseph, AJ and Paul accomplished together changed the lives of many of the people in that conference hall that day. That Thing has that kind of power because it’s not just a great piece of work for alternate communication users; it’s a great song, period. And, at the heart of it is a young boy with a big voice, big ideas, and lots of swagger.
Joseph may just represent a new beginning in what’s possible—and a new attitude in what’s acceptable—for this generation and future generations of alternate communication users.
The song That Thing (below) is available on iTunes. Check out AJ's Music Without Barriers.
By Joseph Spahn-Vieira
That thing, that thing, that thing,
Don't be scared . . .
That's right I said it, I said it,
Don’t, don’t doubt,
That thing that thing that thing that thing,
Don't be scared,
don't be scared, it's better to love than to like . . .
I worked with you and you worked with me, so don't be scared,
The hearts fall like rain into my lunchbox, I take them out and give them to you . . .
it's a little bit of this, and a little bit of that,
That, that, that, that thing . . .
Don’t be scared,
don’t don’t doubt,
Don’t be scared,
don’t don’t doubt,
That thing that thing that thing
Don’t be scared,
That's right I said it,
Don’t, don’t doubt.