How might design positively affect the experience of a parent who has just learned their child has a physical disability?

The moment a parent learns that their child is without sight is a life-changing event—one full of fear, doubt, and an overwhelming sense of being utterly alone.

As an investigation into the ways design can mitigate challenges associated with disabilities, I designed a touchstone intended for parents of a recently diagnosed blind child.

Instead of producing yet another didactic resource, I structured the information around the stories I had learned and the interviews I had conducted throughout my research process. By building this resource from the voice of blind adults speaking to the challenges they overcame in order to live fulfilled, independent lives, this resource preemptively speaks to the concerns parents feel as they grapple with their child’s new reality.

Feel free to contact me for a full copy of the final deliverable or to view the research book produced in conjunction with it.

THE PROCESS

EXPLORATORY RESEARCH

During a previous project, I had become intrigued by the unique challenges associated with being born blind or losing sight at a young age. I began the process with an exploratory phase, during which I immersed myself into the visually impaired community of Philadelphia. Largely through the help of my primary contact, Patricia Maunder, I met with families, attended meet-ups, conducted home visits, and interviewed many visually impaired users and their parents and/or caregivers.

school

Overbrook divides students into four tracks based on their specific needs. I spent a day with the “life skills” students, observing how teachers taught them not only basic academic courses, but also skills requiring unique solutions for navigation and eating.

Family

Two families welcomed me into their homes, where they provided contrasting examples of how parents can respond to a V.I. diagnosis. While one parent felt limited by the engaging toys she could find for her son, the other chose to design and build educational materials customized to her daughter’s unique abilities.

Community

The Touch Tours introduce users without sight to cultural wonders typically “off limits.” The Tours are designed to provide an interactive multi-sense exploration of ancient Egyptian artifacts.

Building empathy

As an exercise in facilitating empathy, I visualized the developmental challenges that arise when visual stimuli is absent.

FocusING the research

Though my exploratory research revealed countless design opportunities, I found myself returning again and again to the experience of the parent. It was apparent that the parent’s comfort in dealing with their child’s diagnosis had a critical parallel to future independence. Sandra Huwie, a family relations coordinator at the Children’s Hospital of Pennsylvania, confirmed this hypothesis. The parents are often left feeling entirely un-moored after a diagnosis; they’re left with dozens of questions about how to best equip their children for the future.

The AHA Moment

In contemplating how a designer might impact this trajectory, I realized one of the most profound opportunities lay in the research I had been conducting. I had immersed myself in the community and met with countless individuals who demonstrated the limitless lives visually impaired children could have.

I worked with parents to understand the most pressing questions (Will my child be able to travel? Will they hold a job? Will they be able to participate in sports? Will they be able to live on their own?) and used the interviews to answer them in a personable, story-based way.

In addition, I incorporated some basic information that would be valuable in the first few weeks. The book included a basic anatomical diagram to assist with doctor’s visits, a tool for assessing how comfortable the physician made them feel, a place to keep record of appointments, and more.

To see the complete resource or to see the accompanying research book, please contact me.