Challenge
With more than 25% of the U.S. population living with a disability, it's easy to see why #RepresentationMatters has become a cultural movement, catalyzing an important dialogue and call-to-action for change. Yet, staggeringly, disabled people still remain largely unrepresented in the media. And when they are featured, they are often held up as inspirational figures based solely on the obstacles created by their disabilities, rather than recognized for their achievements. The disability community calls this "inspiration porn."
Patients and advocates in the spinal muscular atrophy (SMA) community have echoed this feeling and have shared publicly that growing up, individuals...