How can design empower people with limb loss to better share their story—their whole story?
Experience design, Storytelling, Illustration
Graduate Thesis, MFA Products of Design, School of Visual Arts, Guidance from Emilie Baltz, 2018
Imag(in)e is a visual storytelling experience for people with limb loss and limb differences. The stories of the limb loss community are often overlooked or focused only on limb differences, when people are so much more than a singular attribute. Through this project, I wanted to change the narrative in order to raise awareness and properly represent the limb loss and limb difference community.
“Actually, disability is not something one overcomes. Stories that claim successful people with disabilities overcame their disabilities mislead the public.”
– Haben Girma, the first Deafblind person to graduate from Harvard Law School
The culture and conversation around limb loss focuses on two extremes; On the one hand, they become part of what disability advocate Stella Young termed ‘inspiration porn’, where people with limb loss become an inspiration, which usually comes from a place of pity. While on the other end lie models, actors and athletes who are glamorized and fetishized, by the media.
In both cases, the limb loss becomes the singular aspect of the person’s life, the people are objectified and it doesn’t represent the realities of their life. I wanted to combat this kind of representation through visual storytelling, highlighting multiple aspects of a person’s experiences though an event called IMAGINE. Where the participant would be interviewed based on conversation cards I created, while an illustrator would be live illustrating a few aspects of the conversation. These cards were meant to allow the participant to choose what they wanted to highlight about their life and identity. The event was held just before the beginning of April, which is celebrated as Limb loss awareness month, and the participant, Gabriel, shared the image on his Instagram, to create awareness around the needs and experiences of people like him.
I wanted to combat this kind of representation through visual storytelling, highlighting multiple aspects of a person’s experiences though an event called Imag(in)e. The stories we tell about ourselves are an important part of our identity. According to an article I read by the American Psychological Association, “We don’t just tell stories, stories tell us. They shape our thoughts and memories, and even change how we live our lives. Storytelling isn’t just how we construct our identities, stories are our identities.”
After speaking to a lot of people in the LL/D community and reading more online, what I heard was that most people don’t like the idea of their impairment being the central focus on their identity. I felt there was a need to create space to express their whole identity and personality in a way that was more holistic than traditional forms of storytelling. The goals of this project were two-fold—one was to figure out a better form of representation and foster a sense of dignity in my audience, and the second was to tell compelling stories to draw attention and raise awareness around the needs of people in this community.
The experience was designed as primarily an interview between the participant and an interviewer. As participants arrive at the event, a host greets them and leads them to a photo booth. After the photo, participant sits down with the interviewer and an illustrator and they chat about a few different aspects of the participant’s story, life and experiences based on specific prompts. I designed conversation cards on various topics so that the participant could choose what aspect of their life they wanted to highlight. During the conversation, the illustrator live sketches this story onto the photo. At the end, the final image is printed and handed over to the participant along with the digital file to share on social media. The month of April is celebrated as Limb Loss Awareness month and I held the event just before the start of it, so that my participants would have their visual story ready in time to share if they chose to. The event was held at a rented space in NYC and using carefully selected props, I curated the space to feel welcoming and cozy. I created an Eventbrite page and an Instagram (@imaginevisualstory) account to reach out to people. Participants could RSVP through the Eventbrite page.
The event was a great success, since the two participants that did come—Gabriel and Mac—were very engaged and we were able to have an extended conversation with both of them. I consider this event to be a prototype for something bigger, and doing this event made me understand better the logistics of how much time is required for each conversation and the illustration.