Collective voice of disability community captured by new song, 'Spaces'

Transcript

Notice: Transcripts are machine and human generated and lightly edited for accuracy. They may contain errors.

Judy Woodruff: And now to the story of a song called “Spaces.”

It’s one made by and for the disabled community. While the song highlights a disease known as spinal muscular atrophy, or SMA, it also celebrates the talent of the much broader disability community.

It’s part of our arts and culture series, Canvas.

James Ian, Singer & Songwriter: I have spinal muscular atrophy Type 3. It pretty much affects all of the physical aspects of my life. Spinal muscular atrophy is a neurodegenerative muscular condition that affects your muscles and weakens your muscles over time.

My name is James Ian. I’m the singer of the song “Spaces.” I also wrote “Spaces” along with Barry Weeks, Tom Rowland, and other members of the SMA community.

“Spaces” is a song created by the SMA community for people with disabilities, for the SMA community. I started out playing piano, always have been a singer. And then I just started picking up other instruments as I got older.

SMA does make playing instruments more difficult due to fatigue, so I have to be smart about how to conserve energy and work with SMA.

Woman: I was interested in the concept of spaces.

You, James, came up with that one?

James Ian: Yes, the thought for that one…

Having that brainstorm with the SMA community and having our voices really be heard and be the ones that created this thing, I don’t think that’s been done before. We often don’t think that we’re seen or considered or heard, and people kind of just look over us or look past us.

And so we really, really wanted to be seen. And so “Spaces” is about that. It’s like, we have disabilities, we have SMA, but we’re out here in the world, like, doing really, really cool, amazing things.

I teared up when I saw those photos come to life, because they were just so spectacular.

Dominick Evans was the director and came up with the concept for the music video. Dominick was directing from home via iPad. And then Zach Merck was the director on the ground.

It was really cool that, even though Dominick couldn’t be there in the room with us, that everyone made sure Dominick was like the guiding voice and very, very included.

I hope this also shows that you can do projects with people with disabilities from inception to finalized product. They can create it, they can write it, they can sing it, they can act in it, they can model in the project, and they can be amazing projects that the whole world will love and can see and want to emulate.

Judy Woodruff: I really love that. What a wonderful piece of music.

And the song, sponsored by pharmaceutical company Genentech, was just released and can be found online at smamyway.com and on YouTube.