The Data Design Lab logo features a prism (triangle), as a tribute to Dr. Chandan’s 40th birthday present to herself—prism glasses. Dr. Chandan always struggled with depth perception and being especially clumsy on land, but didn’t know that she was unable to see 3D until being diagnosed with vertical heterophoria. After putting on prism glasses for the first time, she called her partner Matt sobbing and said “Um, excuse me, the TREES on the side of the road…have they always been round?! Was anyone going to tell me this?! What else have I missed?!”
Without prism glasses, her brain opted for 2D vision instead of 3D vision to cope with visual and vestibular overstimulation due to the uncorrected congenital visual impairment. Put another way, her brain turned off input from one eye, resulting in vision only in 2D. For someone who has previously only lived with 2D vision, 3D vision is initially overwhelming…especially for a brain that is 40 years old instead of 4 months or 4 years old. Though prisms now allow her to see 3D, it’s a double-edged sword of beauty and pain—leaves and flowers are more beautiful than ever, but virtual meetings and driving remain a struggle.
Along with the diagnosis came two years of grief at having to re-learn any and all tasks that utilize the eyes. Things that the brain does automatically—such as switching between distance- and close up-vision, integrating central and peripheral vision, tracking moving targets such as her partner/child/dog/cat—had to be re-learned and practiced daily, either via vision and occupational therapy or via building Legos at home. Through two years of work in vision therapy and the incredible support of her DDL colleagues (Peyton Purcell & Jamie Valis), Dr. Chandan re-learned to do the ‘nerd things’ she loves. While the work activities of reading and writing now look very different than they did two years ago (requiring accommodations on all days and characterized as ‘low functioning’ on some days), Dr. Chandan is very thankful for both the ability to continue working at a slower pace and the ability to see leaves in 3D. If you find her staring at things (usually nature) like a child, as if she’s seeing them for the first time…in a way, she is<3
Data Design Lab’s Mission
The mission of Data Design Lab is to utilize multiple lenses in interpreting data as a strategy to find solutions. DDL defines data broadly, encompassing not just quantitative and qualitative data, but also stories, narratives, pictures, sights, sounds, smells, tastes, feels, textures, vibes, temperatures…any information brought to the brain by our senses. As six-year-old Dr. Chandan once said, “How do we know that what YOU call blue is the same thing that I see as the color ‘blue’?” Recognition of different interpretations of the same data is critical in today’s world and is fundamental to bottom-up processing, where understanding of the world is built from raw incoming data rather than from pre-existing expectations. From raw input, the DDL team assembles understanding, ensuring that diverse perspectives are around the table during the sense-making process.
The prism further embodies the Guiding Principles of DDL, as it is an example of how community wisdom and professional expertise must be combined to generate novel insights. The DDL team facilitates an environment where open dialogue is not just embraced, but is seen as a critical prerequisite for the co-creation process. Questions and feedback are seen as opportunities for clarity rather than for communicating judgment.
DDL is skilled in bringing perspectives together by connecting physicians, people with diverse lived experience, families and supporters, and policymakers around questions that matter to disability communities. DDL was formed in response to the disability community’s priority of education that addresses misinformation and recognizes access barriers regarding data translation; put another way, productive dialogues can only occur when 1) everyone has access to the same information in a language they can understand and 2) everyone is speaking the same language. The more perspectives around a table, the more important the skill of translation becomes.
DDL helps provide a more complete story of what data means by putting our Guiding Principles into every project we partner on with other organizations. #TeamworkMakesTheDreamWork
Are those mermaid colors?
If you looked at the 3 colors in the logo and immediately thought ‘mermaid’, and then thought to yourself ‘that’s silly, it can’t be that’…don’t discredit your own bottom-up processing skills—DDL’s logo does in fact use mermaid colors: sky blue, lavender, and turquoise.
Why mermaids?
Dr. Chandan uses a mermaid metaphor to explain the way she experiences the world. As a former synchronized swimmer, she has always felt more comfortable underwater than on land, and her prism journey helps her understand why she gravitated to the sport in the first place—both water and prisms refract light, which explains why she has always been able to see better underwater than on land.
Can you really use mermaids to explain things?
Bet. Check out DDL’s first blog post, Mermaids and Medicaid, where we explain how mermaids and Medicaid are related to each other, as part of ongoing policy discussions at state and national levels.
