Metro Detroit man with rare genetic condition shoots music video remotely from home
Dominick Evans lives in Metro Detroit and shot the video remotely from his bed, where he can lie down and be relieved of the chronic pain caused by his SMA.
FOX 2 – The song is called “Spaces”. And the video is a celebration — a collaboration — as the singer, director and featured families all share a common bond — they live with a genetic neuromuscular condition called SMA — or spinal muscular atrophy.
“That’s what ‘Spaces’ was about, to show that we’re not just in this world – in these spaces – but that we deserve to be there,” said Dominick Evans.
Evans lives in Metro Detroit and shot the video remotely from his bed, where he can lie down and be relieved of the chronic pain caused by his SMA.
Dominick – who is transgender – could walk as a child. But now, at the age of 41, this progressive illness has taken its toll on his body – but not his mind – or his abilities.
“I was here in Michigan while everyone else was in California, in Hollywood, and I was able to direct remotely,” Dominick said. “I’ve known for so long that this is a skill, but actually showing that disabled people – really anyone – can direct from anywhere.”
And Spaces – featuring vocalist James Ian – seeks to create space for people with disabilities, who are so often underrepresented in the media – but have so much to offer.
“Our world is diverse and our media should reflect that,” Dominick said. “For so long we have been told we cannot accommodate you or you are unable to.”
But Dominick says the pandemic – and working remotely – has opened new doors for the disabled. He and singer James Ian have worked hard to bring their vision to life, and he hopes spaces offer more opportunity and inspiration as well.
“We’re in this world, we’re here, we’re doing things, don’t ignore us, that’s the thing — we’re often ignored,” Dominick said.
And this despite the fact that every fourth adult in the USA has a physical or mental disability. This project, sponsored by biotechnology company Genentech, aims to change that.
“That’s what I’m all about — telling our stories authentically and helping the world see that we’re just like everyone else,” Dominick said. “We can work in these industries and create things that are beautiful and wonderful – like all these other creators who have a lot more support than we do.”
