How do we remember? Let us count the ways
Jamie Sherman Blinder
By Asia Siev
Language plays a role in every aspect of our lives. It connects us and gives us the ability to express our emotions, thoughts and so much more. It can be devastating to those who lose the ability to use it.
Maxwell Weng knows firsthand what it takes to care for someone who can not communicate their thoughts or feelings. After Weng’s grandmother suffered from two strokes in 2013, she lost her ability to speak due to a language disorder known as aphasia.
“She knew what she wanted to say, she had the thoughts, but she was unable to speak, unable to write, unable to type,” said Weng, a second year pre-health and computer science major at the University of Michigan. “The experience was really frustrating for her, and for us as caregivers.”
Aphasia affects the production or comprehension of speech, as well as the ability to read or write. It is always due to a head injury—most commonly from strokes. About 1 million people in the United States currently have aphasia, and nearly 180,000 Americans acquire it each year, according to the National Aphasia Association.
For those with aphasia and their caregivers, language and communication become a point of frustration. For Weng, that source of frustration inspired him to make a difference.
With the help of the University of Michigan Aphasia Program (UMAP), Weng and his sister Linda, who is still in high school, launched Vitam, an online platform dedicated to helping patients with the condition. The website offers several customizable templates that can be used to compose messages through pictures and spoken words, as well as ‘yes/no’ templates with eye-trackers fitted to them. These templates offer a form of communication for those with aphasia.
This past winter, Weng enrolled in INSTHUM 311, a mini-course with the Institute for the Humanities that focused on how arts and exhibitions activate research within the humanities. Taught by Amanda Krugliak, the Arts Curator and Assistant Director for the Institute for the Humanities, Weng began to make the connection between his work with the aphasia community and art.
“I became more aware of the impact of the arts on people, as well as the impact of the arts on health and wellness,” he said.
With the onset of the coronavirus pandemic, everything from classes and doctors appointments, to graduation ceremonies and family gatherings went virtual.
For aphasia patients, it disrupted the care usually received from therapists and speech-language pathologists. Issues with Telehealth appointments and insurance meant that care was further disrupted. However, UMAP hosted weekly Zoom social hours as a means to keep the community connected during physical isolation.
Originally, Weng’s project was called “Celebrate What Inspires You,” where he asked people in the aphasia community to send images that inspired them during quarantine. Rather than receiving inspirational snippets from outside of the community, Weng received something that was far more introspective—an overwhelming majority of the material submitted told the story of how patients with aphasia, caregivers and clinicians adapted to a new virtual world.
This inspired Weng to transform his initial project idea into the Aphasia Community Digital Quilt Project. The project consists of photos, videos and Zoom sessions and serves, “to document and celebrate how patients with communication disorders, and patients with aphasia, along with their caregivers and clinicians have adapted to the post-COVID world.”
In addition to working with UMAP, Weng was an Optimize Social Innovation Fellow this summer. According to Weng, a group of mentors were able to help them think through the project.
“The mentors not only helped us through it from an arts perspective, but also from an engagement perspective. They helped us figure out how we could use this project to reach out and connect the community.”
Weng’s ultimate goal for the Digital Quilt Project during the pandemic is to, “have something that preserves this sort of memory chapter, so we can look back upon it afterwards, and be able to say, ‘this is how far we’ve come.’”
Jamie Sherman Blinder
Jamie Sherman Blinder