Teaching touch: Groundbreaking research brings DeafBlind adults and DeafBlind children together 

Seated closely together, a group of about a dozen people meets in the Multipurpose Room in Gallaudet’s Student Center. They are DeafBlind, Deaf, hearing, signing, and nonsigning, and use a mix of languages. But each person is connected through touch. In the tight spiral-like formation, people place their hands on the bodies of those expressing themselves, so “speakers” know who is witnessing the conversation. Others give feedback by tapping on others’ arms or lower thighs.

This is what it looks like when the research team behind PTKids gets together. The groundbreaking project, led by Associate Professor Deanna Gagne and Hayley Broadway, E-’05 & G-’18, is setting out to understand what happens when DeafBlind adults communicate with DeafBlind children in protactile (or PT), a language based on touch, using placement, motion, and pressure. The language, which was developed by DeafBlind adults over the past 20 years, has become a key component of DeafBlind culture.

“For this meeting, we all will be in a PT space, created by us,” notes Broadway, a DeafBlind researcher, educator, and protactile expert at the September gathering on campus. PTKids, which is funded by a $2.5 million grant from the National Institutes of Health, is just starting the fourth year of its initial five-year plan. They have recruited two cohorts of DeafBlind children — two children are in Texas, where Broadway is based, and another nine children are in Arizona. Both sites are led by DeafBlind PT experts, who regularly play and interact with the children. 

Centering protactile, a fully tactile language

DeafBlind people used to primarily communicate through interpreters, even with one another. For instance, a conversation between two DeafBlind people would involve two interpreters, relaying the information through a complicated chain. Broadway describes this as “communicating through code” and that it felt “impersonal and awkward.” In 2007, the community decided to literally put themselves in touch to communicate freely. “That is how protactile was developed: through touch and physical contact – it’s a physical connection. No vision or hearing is necessary. With protactile, we can understand everything that’s being communicated. It’s incredibly powerful,” Broadway says.

As an example, Broadway signs TREE in American Sign Language (ASL), with her right arm as a trunk and her five fingers representing branches. “ASL, signing in space, is visual. It’s not tactile.” She goes on to guide the interviewer’s arm to form TREE, but then uses her fingers to indicate someone climbing it and then cutting it down. “That conveys more tactile information, which isn’t available through ASL,” she explains. Unlike listening to someone speaking English or watching someone signing, protactile requires two people touching to exist.

The power of touch

Just as early exposure to ASL is beneficial for deaf children, introducing protactile to DeafBlind children has the potential to help them achieve developmental milestones and contribute to their long-term quality of life. “When DeafBlind adults teach protactile to DeafBlind children early on, that’s critical to their identity formation,” Broadway says.

Whether it is intentional or inadvertent, mainstream interventions tend to prioritize hearing and sighted norms and isolate DeafBlind children, Broadway explains. “DeafBlind children grow through experience. That means allowing protactile, and allowing touch and exploration so that they can experience things alongside others,” she says. Broadway encourages parents to learn protactile and reach out to DeafBlind adults for support. “There’s a DeafBlind community out there that can be actively involved in the development of children through direct communication,” she adds.

The PTKids team is creating resources for all families with DeafBlind children. They are currently revamping the website deafblindkids.org, which features several videos exploring protactile. (Another soon-to-be-added lesson is on Youtube.) A powerful series of interviews with parents of DeafBlind children is in the works.

The PTKids project also offers an incredible opportunity to grow protactile. “Most of the protactile research has been on DeafBlind adults. We’re missing research on DeafBlind children,” says Broadway. As Gagne explains, most languages have been deeply influenced and shaped by young people, who instinctively play with language. But so far, protactile has been used exclusively by adults who have typically also known ASL and English. Adult protactile users might occasionally lean on this knowledge to convey certain ideas, but with kids, they can’t do that. That means the DeafBlind experts in the study will be pushing the boundaries of PT while they play. “They have to interact with babies in protactile, so they have to innovate,” Gagne says. 

New tools, new methods, new research

One of many challenges for the PTKids project is showing that these DeafBlind children are perceiving and processing their world even if they aren’t producing language yet. “People often think of kids — especially disabled kids — as being totally blank slates,” Gagne says. This can lead adults to oversimplifying communication with them and delaying critical language exposure. PTKids aims to address this fallacy by creating a new way to test young children’s pre-linguistic comprehension. 

The team includes engineers from St. Louis University’s CHROME (Collaborative Haptics, Robotics, and Mechatronics) Lab. The CHROME Lab’s other projects include a puck for Blind ice hockey and adding vibrations to digital graphics on tablets and phones. For PTKids, one of their missions is to create a device that can mimic the approach of tests initially created for sighted children. A common method of studying babies before they can talk or sign is a habituation task, Gagne says. “You induce boredom with repetitive stimuli. If I show you one shade of pink over and over again, eventually you will get bored. Then I introduce a new shade,” she explains. If you can perceive the difference, you will be interested.

A similar test can measure quantity perception, which babies have before they can count with language, Gagne continues. So you can repeatedly show a sighted child a screen that has four dots. “When you change it to five dots, babies typically continue to be bored,” she says. But if the ratio is larger — say, two dots to three dots, or one dot to three dots — they attend to it. The fact that they are no longer bored means they notice the difference and are perceiving the quantity (albeit without language).

To translate this test into vibrations for the PTKids project required starting from scratch — 3D printing various designs, fitting prototypes on mannequins, and collecting lots of feedback from DeafBlind team members. Not only do their devices have to be childproof, but they have to be optimized for the DeafBlind adults running the study.

The resulting device is passed around at the campus meeting to touch and discuss. It looks like an Apple Watch with a finger band heart rate sensor. It delivers two vibrations multiple times before changing to three, and it also serves as a heart rate monitor. A bit counterintuitively, researchers expect a child’s heart rate to slow when presented with something new. “Instead of excitement, you’re processing it. So when a new thing happens, you become attentive,” Gagne says.

In addition to the CHROME engineers sharing the latest prototype at the meeting, PTKids team members give updates about their recent presentations at the Deaf Academics and Researchers Conference in Houston, Texas, and the International Congress on the Education of the Deaf (ICED) in Rome, Italy. The ordinary ins and outs of running a project, including plans at a specific site and staffing changes, are handled in small groups, or PT Bubbles.

Broadway and Gagne also discuss a forthcoming paper that explores the emergence of protactile and future directions for this research. Will DeafBlind individuals using protactile develop heightened tactile-perceptual abilities? How is protactile grammar evolving? Protactile can’t be fully captured through writing or video — so is there another possible documentation method using new technologies?

The future of protactile

As more people adopt protactile, it will continue to develop and expand its reach. Gagne highly recommends John Lee Clark’s 2023 book “Touch the Future,” which lays out the case for using protactile. One of his chapters is about the emergence of PT plays, like a show about slavery that is debuting at the University of Maryland this fall. (It’s an immersive protactile experience for audience members, who interact with the actors while blindfolded.)

But there are also hurdles ahead. PLI, an important training grant for protactile theory and protactile interpreting, has just closed. “They, like us, prioritized hiring DeafBlind trainers to teach their classes,” Gagne explains. So these DeafBlind experts who are scattered across the country will not have the same opportunities to get together. “All language grows through contact, but protactile doesn’t have the remote contact resources and means that other languages have,” she adds.

That makes the PTKids project even more critical to the future of all DeafBlind people, from the children just starting to explore their world through touch to the adults who have discovered community through protactile.

Check out deafblindkids.org for more resources on protactile. And learn about another recent innovative project from Gagne, an Associate Professor in Gallaudet’s Linguistics program.