By Nicole Villalpando
Austin American-Statesman
Austin and the University of Texas will soon have the largest center for research and education on stuttering.
On Monday, Oct. 19, UT announced a $20 million legacy grant given to the Moody College of Communication to establish the Arthur M. Blank Center for Stuttering Education and Research.
The grant will be paid over 10 years and is from the family foundation of Atlanta Falcons owner and Home Depot co-founder Arthur Blank, a fellow stutterer.
The center will house the university’s current clinics and research centers: the Michael and Tami Lang Stuttering Institute, the Dr. Jennifer and Emanuel Bodner Developmental Stuttering Laboratory, and the Dealey Family Foundation Stuttering Clinic.
Currently, the center serves 500 people ages 3 years to adult, but it will be able to scale up to helping 3,000 people a year. Additional funding will add four satellite centers, the first one in Atlanta. Director Courtney Byrd has not determined the location for the other three centers.
Another goal in the next 10 years is to serve 10 countries, mainly through summer camps. Byrd said those are like boot camps on overall communication, plus they provide social interaction and peer relationships with fellow stutterers. Often it is the first time a camper has been with another stutterer.
Rethinking stuttering
The Arthur M. Blank Family Foundation is investing its money in UT because its stuttering and research program takes a different approach from traditional interventions for stuttering.
“I think those things are OK, but they don’t really get at the freedom, the freeing of the inner person, the inner soul, the inner spirit, the inner mind, the intellect of what each person has to say and feel,” Blank said in a news release.
Instead of trying to “fix” the stutter, the Lang institute works with people to improve their communication skills. Students learn to make eye contact, practice public speaking, use breathing techniques and disclose that they stutter.
Stuttering is a neurophysiological disorder that causes people to process speech and language differently. Stuttering is often genetic.
What is happening inside the brain and the rest of head is not the same for every person who stutters, but some describe it as feeling like the muscles in their neck tighten.
The center also is trying to change the stigma around stuttering and better educate stutterers and the general public.
“Stuttering doesn’t affect my intelligence,” said Vivian Heitkoetter, a 15-year-old sophomore who is taking three advanced placement classes.
Yet when she was in kindergarten, Vivian was put in a reading support class because teachers thought she had a developmental delay.
Stuttering is a roller coaster, said Juan Cortez, 28, a disc jockey. He likens it to playing basketball against a strong defense: “I know where the basket is, I know where I’m going, but there’s a hurdle there.”
Because of the stuttering, he felt uncomfortable in his skin. He was always thinking: “I hope I don’t stutter. I hope they don’t know. I hope they don’t find out.”
People often don’t know what to do when they hear someone stutter. Sometimes people will try to finish Juell Reed’s sentences when he gets stuck on a word.
“It annoys me a lot,” the 13-year-old eighth grader said. “They probably think I forgot what I’m going to say.”
He knows exactly what he wants to say. He’s just waiting to get the words out.
Stuttering has become talked about nationally after presidential candidate Joe Biden began speaking about his life as a person who stutters.
“It shows a stutter can’t hold you back from doing anything,” Juell said
Building the center
The Lang institute, Bodner laboratory and Dealey clinic began with Byrd, who joined the UT faculty in 2006. She became interested in stuttering after working with a stutterer as an undergraduate at Louisiana State University-Shreveport. He was doing everything he was told to do “to get rid of” the stutter, but it wasn’t working. In a clinical setting, he could practice the words or switch out words, but in the real world the stutter would be there.
“He would be devastated,” she said.
After graduate work and a fellowship at the National Institutes of Health, Byrd came to UT and began doing more research into stuttering. Byrd began to focus on things that build confidence in speaking rather than trying to cover up a stutter.
“This example is one that speaks to the power of what it means to be a top research university,” UT President Jay Hartzell said in a news release. “And just hearing Dr. Byrd’s own story about the kinds of interventions and treatments she was exposed to and doing as a student, grad student and then now how the thinking has changed, it gives you a sense of the power of research, the power of using data, the power of learning what the best practices should be in a difficult field like stuttering.”
In 2012, Byrd received a research grant to establish the Bodner laboratory. In 2014, another grant opened the Lang institute to enable her to provide a free program to the people she had been researching. In 2019, she was able to expand care with a grant that established the Dealey clinic.
The center now has Byrd and two part-time employees. The grant allows Byrd to hire more than a dozen new people, including clinical supervisors, clinical fellows and a grant writer. The foundation required Byrd to do feasibility studies on what she would need to expand the program in a meaningful way. For her, those services also had to continue to be free.
Right now, people face a two-year waiting list to enroll in the weekly program at the institute, Byrd said. The hope is that the grant will eliminate that, but each time Byrd gets a new grant, more people become aware of the work, and the waiting list grows.
Changing the world of stuttering
One of the things Byrd and the institute already have done is help the Austin Independent School District change the kind of speech therapy it offers to kids who stutter by making it more about communication skills. She hopes to take those guidelines to more school districts across the country.
Byrd said she sees worldwide, long-term implications for the work being done here. If kids can receive the kind of speech therapy that is about building communications skills rather than trying to eliminate stuttering, “they will have a different trajectory than they would have. … When you live under stigma, there’s the risk of bullying, of depression.”
The institute also helps families understand how they can help their kids. Sandeep Makwana, who stutters, learned to help his son Sohan, 15, a high school sophomore, by encouraging him to speak more. Makwana also learned to have patience and let Sohan finish his thought.
“We saw a huge difference in him as he participated in therapy and the open mic,” Makwana said. “His ability to communicate, his confidence level was stronger.”
During the program’s open mic, participants get up in front of a crowd of 200 to 300 people and give a speech they’ve prepared. Juell remembers talking about being yourself and not letting stuttering hinder your ability to get a good education or job. He wants to be an engineer
Unyime Udosen, 49, came to the Lang institute as a volunteer for the camps and then received services herself. Now working in information technology, she was discouraged in her 20s from becoming a lawyer because of her stutter.
In her career, she said, “I realized there are things I refused to do because I stutter.”
That includes speaking in public and taking leadership roles. Before, she would want to prepare her answer and avoid the words that she thought would make her stutter, which then limited the conversation.
Byrd also said that when people who stutter try to constantly alter what they are saying, they don’t listen as well to the other side of the conversation, and they don’t always choose the correct word for the situation, which can give the wrong impression.
“If it’s a super long word, I know I’m going to stutter on it,” Juell said. “I used to avoid words, but not anymore.”
The message Udosen took away from attending weekly classes at the Lang institute was “this is who you are. Embrace that.”
The best tool she received was practicing disclosing that she stutters. Students work on a prepared statement to introduce themselves, including that they stutter and a little bit about stuttering. It helps them be advocates and educators.
Disclosure has helped Cortez tremendously, he said. “It feels like the elephant in the room. I pointed it out instead of pretending it’s not there,” he said.
There still are times where it is frustrating, such as when he just wants to order dinner at a restaurant or when he stutters saying his name. The confidence that the institute has helped him build, though, has allowed him to DJ and host events without being “miserable, embarrassed or ashamed.”
“It’s all about confidence, eye contact and body language … and self-disclosure,” Cortez said.
When Byrd talks to new families coming into the program, they often are looking for the secret, the thing that will make them not stutter, she said.
“It can make me cry,” she said. “I wish I could give that to them.”
She has to explain that they will still stutter even after this program. She offers them a place “where you can transcend your stuttering, a place where you can be talking and wouldn’t be thinking about your stuttering. There’s a chance you’re going to stutter less; at the very least, you won’t notice it as much, and neither will other people.”