Inclusive music video highlights need for disability representation

Posted at 6:48 AM, Nov 19, 2021
and last updated 2021-11-19 09:04:23-05

NASHVILLE, Tenn. (WTVF) — A music video for the song "Spaces" produced by members of the spinal muscular atrophy (SMA) community released in early November featured a woman and her family from Spring Hill.

The song and video were made in an effort to shed light on the need for more diverse representation in the music industry as well as other medias. SMA My Way together with sponsorship by biotech company Genentech organized members of the SMA community from across the U.S. to take part first in the songwriting process

Click here to watch the full music video.

"They approached us and they said, 'Hey, we really want to create a song because we believe that music it's just a whole nother language and it's a whole nother avenue we could, you know, reach an audience with and we want it to be fully developed by people within this community,'" explained Megan DeJarnett, a participant with SMA and Spring Hill resident.

DeJarnett was diagnosed with SMA when she was just 18 months old.

She said, "I had a shorter life expectancy than most. They knew I would most likely live every day, you know, in a wheelchair, but really didn't know much about it. And my parents actually had four children, and three of the four of us are affected with spinal muscular atrophy."

SMA is a neuromuscular disease that affects muscles in the body and how they regenerate. For DeJarnett, that means severe weakness from head to toe, "I can't raise my hands over my head or brush my own hair, dress myself or anything like that. And so that's why I rely on family and caregivers and friends."

Megan DeJarnett

Despite her diagnosis, DeJarnett pursued her dreams writing a children's book, becoming a content creator, marrying her high school sweetheart and having two children, one of whom has cerebral palsy.

"It's not about overcoming my disability. Like, I live with it every day. It's truly about, 'Okay, how do I live with it?' You know, and function well with it and still accomplish all the things that I want to accomplish," she explained.

SMA My Way approached the DeJarnett family to be a part of the song they were creating first by being a part of the song writing process.

"They would ask us a ton of questions about what do we want to share with the world? What what do we think are misconceptions? Maybe, you know, if we could say one word, what would it be like? They had all these really cool prompts and questions and then we just kind of went at it for a couple hours, as what would we want to say if we got to write a song. What would we want to say?" explained DeJarnett.

Her husband, Jake, was part of that songwriting brainstorm Zoom call as well and as a musician, was also asked to send over some melodic ideas for the song.

Artist James Ian who also has SMA is the vocalist for the song they produced titled "Spaces."

DeJarnett said the first time she heard the song she became teary-eyed.

"I thought of the parent who just got a diagnosis for their child. And that's a devastating thing. Because, like I said, it's unknown territory. And there's so much it's just an unknown thing. And I think as the parent, you grow into understanding what it really is, but we hope that a song can show like your child holds significance, your child is, you know, worth so much. And they're going to play a great role in this world," she said. "The song is really about spaces. The song's really about that we all hold a space and important space in this world."

Although it is just one song, DeJarnett said it give her hope for what could be in the future for her own children.

"I think it's so cool that we're finally making the moves in the right direction of representing the disability community, said DeJarnett. "I think entertainment as a whole, I think we have to get back to being real and being really showing real people real life situations and obviously put your creative spin on it. And but I think steering away from that perfect image of a person. It boxed us for so many years that we weren't able to be in media or we could only portray a certain part, you know, but really, the talent that is within the community is absolutely incredible."

Megan and Jake DeJarnett