An inspirational story of overcoming adversity
For the last several years many of us have heard every complaint under the sun about how COVID, whether the Delta or Omicron variety, has screwed up our daily lives. Yes, many of us have experienced unspeakable heartbreak by the devastating loss of friends and loved ones. But for others, it’s the opposite of loss— it’s perhaps the gain of numerous pandemic pounds caused by, for example, too many “quarantinis,” for one (or ten). But despite all the whining and complaining that things will never be normal again, imagine those who had to overcome personal obstacles on a daily basis, long before this virus ever came to be. They, in fact, are ones who inspire me the most. Indeed, they have come to realize that they have the wisdom, the power and the courage to see the light through any darkness and, no matter what their challenge, are still able to embrace happiness, find purpose and live life to its highest potential.
That said, please meet James Ian, a singer, songwriter and actor from Los Angeles, who has Type 3 SMA (spinal muscular atrophy). James served as the principal songwriter for SPACES, taking guidance and input from other SMA community members who participated in the brainstorm. He has auditioned for America’s Got Talent and is a passionate advocate for authentic representation of disabled actors in TV, film, and other media.
Here’s his story: Although diagnosed at 15 years old, he continues to actively record and play original music. Indeed, he wrote the lyrics to SPACES as a love letter to his younger self, with the reassuring and inspiring message that he could achieve what he set out for—that he can live a better life despite having SMA.
I had the opportunity to speak with this amazing man. Here’s what he had to say:
JWM: James, please tell us what the title SPACES means and what the lyrics are all about.
JI: It means that we are all valuable and important, and that we occupy spaces in this world where we color our experiences. SPACES is about people with SMA and other disabilities accomplishing all sorts fulfilling and exceptional achievements in the spaces they occupy. It’s also about all of our existences being meaningful. We all want to know that we are loved and cared for.
JWM: How did you get involved in the creation of SPACES?
JI: Genentech wanted to show the creativity of the SMA community through song, and they found me on social media because of my work in music and the advocacy I do through music. Once I learned about the project, I knew that it would be groundbreaking and that it would be a project that would be important to the SMA and disability communities.
JWM: As a teenager, you were diagnosed with spinal muscular atrophy (SMA). What do you want people to know about your life with SMA?
JI: That SMA has given me a unique perspective and that it has really helped me to become confident and sure of myself. It is a big part of my identity, and it has really allowed me to cultivate my own style.
JWM: I mentioned earlier how many of us can’t stop complaining about COVID. But you undoubtedly have stress on a daily basis, and not just for the short term. How do you deal with it in the day to day?
JI: I try to see things for what they really are. By doing that, I realize most things aren’t as important as I make them out to be and they are not worth the stress.
JWM: Good advice for all of us. Tell us James, what is your day-to-day life like? For example, what do you eat? Do you work out? Do you have a day job?
JI: I eat healthy, often opting for plant-based or vegan diets for long periods of time. I work out regularly, both PT and lots of walking, and I try to be active however I can. I do have a day job: I’m an Account Executive for a gifting company that creates social impacts through gifts. But I spend the majority of my day auditioning, writing and recording music, writing a script I’m working on, training vocally, and taking an acting class. I devote most of my time to my creative pursuits.
JWM. Getting back to SPACES, how did your experience with SMA impact the lyrics of this song?
JI: My experience with SMA acted as a basis for the song lyrics. It was heavily reflected in the lyrics and the lyrics also captured the experiences of others living with SMA. SMA and disability are natural parts of life, and the lyrics are meant to show that.
JWM: How do you hope to change people’s perspectives on disabilities through this song?
JI: I am proud to be disabled, and I hope this song shows that people with disabilities are leading loving, exciting, and fulfilled lives. Disability is not something that should be looked down upon or feared. It just is. We are doing groundbreaking work, and enhancing the world in many ways with our existences. In brief, people with disabilities are sexy, cool, intelligent, and funny to name but a few of our qualities.
JWM: What is the message you want to send through this song?
JI: I want it to inspire people with disabilities to live out their dreams. I also hope it showcases the many facets of disability.
JWM: Who were some of the other key collaborators on SPACES?
JI: In addition to various members of the SMA community, including Shane and Hannah Burcaw, Megan DeJarnett, Cory Jacobson, and Amber-Joi Watkins, key collaborators were Dominick Evans (he has SMA and created and directed the video), Zarek Elizondo (has SMA and created the album artwork for the song), Barry Weeks (3x Grammy-nominated producer who produced the song and helped write the song), Tom Rowland (EVP of Film & TV Music at Universal Music who helped produce and write the song), Zach Merck (award-winning director and producer who directed the video), Joe Labisi (award-winning cinematographer who has directed many music videos), along with many other extremely talented and thoughtful people who were necessary in making this happen.
JWM: How was this recording experience unique for you?
JI: I was working against strict deadlines, although typically I impose the deadlines, and collaborating with more people than I normally do. It was also unique in that when I went into the studio, there were a lot of people there and my recording and songwriting process is usually more intimate. But it was really nice to collaborate and have so much support. It felt like we were all willing to do whatever it took to accomplish the goal, and we all became family very quickly.
JWM: What was it like the first time you saw the music video for SPACES?
JI: I cried because it was so beautiful. Seeing everyone’s hard work come together to create something that was so honest and real made me stop and really take it all in. I had never seen SMA or disability presented like this, and it was overwhelming in the best way possible. I felt like the video was going to do things I couldn’t even imagine. I was speechless.
JWM: What feedback to the song and video has surprised you the most?
JI: It was that so many people shared their personal stories after hearing the song/watching the video. One person thanked us multiple times. Another talked about how societal perceptions of disability and some of the laws around care for people with disabilities cost him the love of his life. To be a part of something that people resonated with so deeply is beyond humbling. I am honored that everyone felt like they could be so open after hearing the song.
JWM: Where can people access SPACES?
JI: Just log onto spacessong.com and on all of the major streaming platforms.
JWM: James, it was an honor to meet you. As I always feel, whether our issues are large or small, life altering or simply annoying, we ourselves have the power to adapt and overcome. And the energy and positivity you have devoted to SPACES has helped so many others become Better Than Before.
