The Song You’re Gonna Sing

More than a quarter of the U.S. population lives with some kind of physical or psychological disability. Yet disabled people remain largely unseen and unheard in the media, and when they are featured, their portrayal is often inaccurate or overexaggerated. For instance, it’s rare to see actors, politicians, comedians, newscasters, journalists, film directors, or screenwriters in wheelchairs. Instead, disabled individuals in the media are often defined by their disability. They are held up as inspirational or brave figures by virtue of overcoming obstacles created by their disabilities, rather than for their achievements -- such as being a great teacher, creative artist, or talented musician. The disability community calls it “inspiration porn.”

The community of people living with Spinal Muscular Atrophy (SMA) is committed to advocating for “disability visibility” and the disability community as a whole. SMA is a rare disease that affects nerve cells in the spinal cord that control muscles and other tissues, and leads to weaknesses that can affect walking and other movements. The community this disease affects is tight-knit, enthusiastic and talented.

Through Genentech’s work with them, we have heard more and more about the crucial role music plays in the lives of many people living with SMA and were driven to reach out to several members of the SMA community about creating a song and music video that reflected their passions. The participants wanted this musical experience to be as far away as possible from “inspiration porn,” and instead, be something that anyone could relate to and enjoy. The song that resulted from this partnership, SPACES, is the first collaboration of its kind, created by and for members of the SMA community, as well as for the broader disability community. The idea behind SPACES is that disabled people must be seen and heard, their talents and achievements deserve to be celebrated, and they belong in all spaces, including those traditionally occupied by non-disabled people. Every aspect of the program -- from brainstorming the message, writing and performing the song, storyboarding and directing the music video and designing the album art -- was creatively led by someone with SMA as part of Genentech's SMA My Way program, built to support and raise awareness for the SMA community. This musical experience is an example of Genentech’s continued commitment to amplifying the voices and experiences of those who have been historically underrepresented and misrepresented.

We hope you will find SPACES to be upbeat and infectious, and encouraging for the message it delivers and the talent of the SMA community members who participated. And we hope that, through the power of music, SPACES will amplify the voices of the SMA community and spark important dialogues about disability representation.

We asked the SMA community participants to share what it meant to be part of this unique collaboration.

James Ian (Los Angeles)

Singer-songwriter James Ian wrote the lyrics to SPACES as a love letter to his younger self, with the reassuring and affirming message that he could achieve what he set out for -- that he can live a happy and fulfilled life with SMA. James is an actor and a passionate advocate for the representation of disabled actors. “For far too long, people with disabilities have not been represented in the media, and when they have been represented it hasn’t been accurate or authentic,” he says. “I think every piece of art that tells the story of someone with a disability should come from someone with a disability, which is why it’s important that this song comes from my voice.” Of the title and lyrics he says, “they mean that we are all valuable, important, and as we occupy spaces in this world where we’re coloring experiences with our existence.”

Dominick Evans (Detroit, MI)

Dominick, a non-binary transgender filmmaker, writer, and father, led the music video creation process. Dominick’s film and TV work has revolved around the inclusion of disabled and other marginalized people. “Having the chance to direct this project and work with a musician like James has been a dream come true,” he says. When directing the music video, Dominick wanted to ensure that it captured the way people within the SMA community live their lives, occupying their own unique “spaces” with their families, friends, and most importantly, themselves. Dominick was excited to be able to direct the music video remotely, from his home in Detroit, while the filming crew was on-site in Los Angeles. “This kind of accessibility and ability to work remotely could open so many possibilities for other disabled directors and creators in the future,” he says.

Amber-Joi Watkins (Philadelphia, PA)

Amber-Joi is an entrepreneur, model, dancer, and caregiver to her daughter, Céline, who has SMA. Amber-Joi participated in brainstorming the themes to the song and video and is featured with Céline in the music video going on a walk, one of their favorite things to do. She says she felt honored to be involved in the song project and thrilled when she heard the finished product. “I love how it captures real life, and I could envision my daughter moving about her day as I was listening to the lyrics.” As a mother, Amber-Joi says she is excited for her daughter to be able to live a life full of dreams. “This kind of project gives me confidence that she can achieve her goals and be happy,” she says.