Creating a Multi-Year Disability Visibility Movement with Genentech & the SMA Community
The Challenge
Genentech makes a treatment for spinal muscular atrophy (SMA), but making medicines is just one part of the company’s responsibility to the SMA community.
The company wanted to further demonstrate its commitment to the community it serves and reach the portion of adults living with SMA who were not connected to the existing advocacy communities.
The Solution
Create first-of-its-kind SMA community-led initiatives that amplify the voices and experiences of those who have been historically underrepresented and misrepresented in popular culture and set a new standard for unbranded healthcare campaigns.
Musical collaboration created for everyone with a disability by SMA community
Fashion show with start-to-finish SMA community involvement
Musical written and performed by the SMA community that takes on everyday ableism with humor and heart
The Insight
Through trusted relationships and dialogue with the SMA community, we identified three critical insights:
- A need for authentic, diverse representation for the SMA community
- People living with SMA do not want to be defined by their disability, but rather known for their unique talents
- There is a lack of visibility and representation of disabled people in media and beyond. In fact, 25% of US adults are living with a disability, yet they are underrepresented or misrepresented in the media, often held up as inspirational
Created with the community, for the community
Creating SPACES for people living with disabilities. A first-of-its-kind musical collaboration developed from beginning to end with members of the SMA Community to promote disease awareness and disability visibility.
Tapped into music as an important way for the SMA community to find expression for their unique experiences.
Worked with a group of SMA community members,
who brainstormed and led the creative execution from beginning to end, including:
- A singer / songwriter with SMA wrote and performed the song
- A filmmaker and disability visibility activist with SMA virtually directed the video
- An artist with SMA designed the original album artwork for the song
Reclaiming the double take for people living with disabilities
Double Take is the first ever fashion show with start-to-finish SMA community support that served as an opportunity for people with SMA to demonstrate the need for adaptive fashion and celebrate diversity on the runway.
Double Take emerged from the community’s desire to make people do a double take–not because of their disability, but because of their style and individuality.
Created to break down stereotypes and champion adaptive fashion including:
- 15 members of the SMA community brainstormed the theme, codesigned clothes and walked and rolled the runway
- Non-profit Open Style Lab provided adaptive
design support in partnership with fashion
industry professionals - Prelude To New York Fashion Week
Putting ableism on center stage
Most Likely Not To… is a first-of-its-kind musical comedy that uses subversive satire, sharp wit and show-stopping songs to convey a fresh and startling look at life with a disability that’s relevant to everyone.
- Convention-shattering musical reinforced Genentech’s commitment to supporting patients as whole people
- 13 members of the SMA community conceptualized the idea
- Empowered the SMA community to make a bold statement about the far-reaching impacts of ableism
- Six songs directly referenced the real-life experiences of the SMA community
- Partnership with Cure SMA, industry leading advocacy organization, helped reach the program target audience
- Music label partnership amplified the musical reach
