Updated: Sep 27, 2022
“I didn’t have the courage to say, ‘Hey, I’m really struggling. I need help.’ They didn’t understand that it’s not my grades. It’s not how much I stutter that correlates to quality of life. In those darkest times, I was getting the least amount of help. It wasn’t until much later that I realized that’s when I really needed help the most.”
It was May 2022, and Harvard Medical School student Nathan Mallipeddi had just won the prestigious $75,000 Grand Prize Harvard Social Impact Award at the Harvard Innovation Awards Ceremony. Mallipeddi accepted his award and returned to his seat, ready to watch the remainder of the ceremony. A short time later, the president of Harvard walked on stage and announced, “I’m not going to tell you who wrote this letter, but I’m going to read it. ‘Growing up, I stuttered,’” he read, “‘I remember the pain, dread, and fear of speaking in front of a group or even to another person, but I also learned that when you persevere in the face of struggle, you will be stronger for it. And the efforts of Myspeech will help so many people persevere. You will help change people’s lives for the better.’”
It was a letter from President Joe Biden. Mallipeddi sat in the audience, stunned, as he heard it read aloud. He had no idea that President Biden would personally recognize his work. The company that was referred to by name, Myspeech, was the non-profit that Mallipeddi had started as a freshman at UCLA. It was the same enterprise for which he had just been awarded $75,000, with a mission devoted to increasing access to stuttering therapy, resources and community for people who stutter. People who stutter like President Biden, and also like Mallipeddi.
This commendation from a sitting president of the United States was more than a personal or professional victory. It meant increased exposure, and therefore access, to specialized stuttering services for people around the globe who stutter.
As with any success story, the path to this triumph was not an easy one. While Mallipeddi is now open about his own stuttering journey and has found self-acceptance as a person who stutters, this was not always the case. His inability to access specialized stuttering services as a child impacted his self-confidence and feelings of self-worth. It wasn’t until he went to UCLA and discovered the local stuttering community that he realized how important it is to find providers who are trained in stuttering.
Recently, I spoke with Mallipeddi to learn more about his personal story and the events that led to the inception of Myspeech. During our call, he was humble and gracious, as well as eager to share his knowledge and his desire to help other people who stutter. He also began by saying, “My story starts with stuttering.”
Originally from San Jose, California, Mallipeddi has been stuttering for as long as he can remember. The son of Indian immigrants, he grew up in a household with a father who also stuttered, and in a culture that values fluency. He is close to his parents, and expresses admiration and love for them both. However, he also asserts that they don’t understand his stutter-positive perspective. He explains, “My dad stutters, but every time he or I stutter, he thinks it’s a reflection on our entire family. It’s very much a cultural thing where, if I stutter, everybody will look at that and so I shouldn’t do it.”
Growing up, Mallipeddi received speech therapy in public school. He describes the speech therapists as well intentioned, but they weren’t well trained in stuttering. They focused exclusively on teaching fluency techniques and on evaluating frequency of observable stuttering, ignoring the underlying feelings and emotions that can often be the most difficult part of the stuttering experience.
During his speech-therapy sessions, Mallipeddi read out loud and practiced intentional prolongations, breathing techniques and other fluency exercises. The techniques helped, in the sense that it seemed like he was “doing something” to control stuttering, but they also made his underlying anxiety about stuttering worse. Practicing and thinking about techniques all of the time made him constantly aware of stuttering, and eroded his self-confidence, eventually leading to an undisclosed depression.
By the time he reached adolescence, Mallipeddi wasn’t stuttering overtly very often, and was therefore being phased out of speech therapy. His high-school speech therapist claimed the reduced frequency of his stuttering as a success. Mallipeddi was also an exceptional student, further adding to the misconception that he no longer needed services. He seemed to be thriving, yet inside he was struggling more than ever. He didn’t have the words for it yet, but he was grappling with stuttering avoidance – or trying not to stutter.
His speech therapist gradually reduced their sessions until they stopped altogether. Mallipeddi recalls, “I didn’t have the courage to say, ‘Hey, I’m really struggling. I need help.’ They didn’t understand that it’s not my grades. It’s not how much I stutter that correlates to quality of life. In those darkest times, I was getting the least amount of help. It wasn’t until much later that I realized that’s when I really needed help the most.”
Mallipeddi interjects here that he is a fan of Dr. Hope Gerlach, a professor and researcher at Western Michigan University who is well-versed in stuttering avoidance. “[Gerlach] says avoidance is like taking a knife and chipping away at our identity. I think about the fact that for years on end, I avoided talking. I lost myself in many ways. I convinced myself that I’ll never be in a career where I have to talk, or I’m just an anxious person. That’s the part of stuttering during my childhood that I remember the most: how much I avoided and lost.”
He recalls avoiding stuttering every minute and every hour of every day of his childhood, using pauses or silence to hide his speech. Mallipeddi goes on to observe, “I acquired this identity of being a shy kid, of being very aloof, but that wasn’t me. When [Gerlach] said ‘it chips away at your identity’ it clicked for me because that wasn’t me. I enjoyed talking to people, but I wouldn’t do it. Avoidance really disabled my childhood.”
High school was a dark period in his stuttering journey, but Mallipeddi had a fresh start ahead with college on the horizon. He could be a blank slate, and also turn over a new leaf when it came to stuttering.
Then, just after his junior year of high school, he experienced a pivotal moment. It was one of those salient stuttering memories that shifts your self-perception as a person who stutters. Mallipeddi was at an academic summer camp, and had been doing research about a science topic. He was due to give an oral presentation about his findings at the end of camp, just like the other campers. The presentations took place in front of everyone – all of the campers, professors, and parents – and were delivered in a large auditorium. He describes the auditorium as being shaped like an amphitheater; the presenter is surrounded by and looked down upon by all of the audience members. It was an intimidating environment, to say the least.
He remembers that his palms were sweating and he couldn’t make out anyone’s face. He wasn’t scared of presenting his research topic; however, the fear that he was going to stutter in front of everyone was all-consuming and disabling. He walked on stage and started to say his name, “Hi my name is….” Nothing would come. Mallipeddi couldn’t get his name out and stood there in terrifying silence. He says, “It’s an age-old experience for all people who stutter that saying your name is the hardest thing to do.”
Since he hadn’t started his self-acceptance journey and wasn’t willing to try and fight through the stuttering block on his name, he just stopped talking. That moment of silence felt like an eternity, although it was probably just a minute or two. Eventually, he was able to move through his name and complete the presentation. Ironically, once he got through that first lengthy block, the rest of his speech was relatively easy and stutter-free. This only served to perplex his audience further. Why hadn’t he just said his name? There were no other clear indications of stuttering that explained what they had witnessed.
Thus, after he was finished, several audience members approached him and asked that well-known triggering (and offensive) question: “What happened – did you forget your name?” Mallipeddi understood that the avoidance on his name came across either as looking ignorant or nervous about public speaking, but neither was true. “That day was very tough because of the shame, the humiliation and the anxiety,” he says, “but I learned something about myself as well. I learned it wasn’t about the fact that I was stuttering, but it was my fear of stuttering that was disabling me.”
After high school, Mallipeddi attended UCLA. He studied biology and political science. He also spent hours researching stuttering online. This led to his discovery of the National Stuttering Association (NSA), as well as a nearby NSA adult-chapter meeting in Santa Monica. This was a revelation! He had never heard about the stuttering community and had no previous awareness of support groups for people who stutter. His first NSA meeting was life-changing. Despite being the youngest one there, Mallipeddi heard other people stuttering openly and talking about acceptance. They shared ideas for dating and getting through stressful job interviews. It was a “tremendous” experience, and it lit him up inside.
He found there was pure magic in connecting with other people who stutter, and he wanted to extend that experience to other adolescents and teens who stutter. Thus, he created a spinoff group called the West LA Family Support Group. It began with kids as young as twelve or thirteen joining support-group meetings with their families. There, Mallipeddi met Cooper, a twelve-year-old who had already attended several stuttering conferences and appeared happy and comfortable with his identity as a person who stutters. Mallipeddi was determined to follow in his footsteps. In 2017, he attended his first NSA conference in Dallas, Texas, and the floodgates opened.
That’s where Mallipeddi realized the biggest issue was access. There aren’t enough speech therapists who are trained in stuttering, and seeing a stuttering specialist is also expensive. Additionally, insurance companies don’t always cover stuttering therapy sessions, so families and clients are left paying fees out of pocket. Such costs would have been outside the budget for Mallipeddi’s middle-class family.
He continued to wonder, “What can I do to increase ease of access?”
Mallipeddi started by developing the Stuttering Scholarship Alliance (SSA), which eventually evolved into Myspeech. The key was that specialists agreed to reduce their rate and join the program. Families and clients were responsible for a small copay and were able to stipulate how much they could afford to pay given their financial circumstances. Whatever difference existed between their copay and the therapists’ discounted rate, the SSA would cover the difference. It was a scholarship program for people who stutter, to help them receive access to affordable specialized care. Getting the scholarship program up and running was an impressive first benchmark, but it was just the beginning.
Mallipeddi wanted to make a broader impact than with individual scholarships alone. Considering that the most disabling features of stuttering are social stigma and avoidance, SSA turned to advocacy. The organization started with hosting conferences at local schools, educating students and the wider community about stuttering.
Still, he felt more could be done, so SSA set their sights on policy measures. Speech-Language Pathologist (SLP) Katie Gore, one of the original SSA Partner SLPs, recently helped pass a bill in Illinois requiring insurance companies to notify providers 60 days in advance of any planned cuts to reimbursement. Similar policy measures are also being worked on by other individuals at the federal level.
While advocacy efforts and policy measures have continued to grow, so has Mallipeddi’s organization. SSA was rebranded as Myspeech, and its allyship and collaboration with similarly-minded stuttering organizations now extends to international entities in India, Ireland, China and other countries.
Yet, Mallipeddi felt that the reach of Myspeech was limited unless they developed proprietary technology. The latest installment from Myspeech, the Myspeech app, now has a calendar of community events across the world, connects individuals who stutter with one another and also with Partner SLPs who specialize in stuttering therapy. It also offers connections to asynchronous resources like mindfulness and meditation apps.
Listening to Mallipeddi’s ever-evolving ideas and determination to grow Myspeech was somewhat mind-boggling. I asked him how Myspeech fits in with his medical aspirations.
Mallipeddi says these endeavors are completely in alignment. For starters, after graduating from UCLA, he took a year off from school to do a research project focused on health-care experiences in India. He was inspired by his mother, a physician, and by the cultural backdrop of the South Asian country where he spent a great deal of time as a child. Mallipeddi wanted to understand India’s stigmatizing perception of stuttering, and also to research stuttering experiences. He also felt that health care is where individuals who stutter feel the most vulnerable, because they are admitting they need help. It’s a space where he feels that improvements in quality of care could result in life-changing outcomes for PWS. His research centered on this question: How do reductive or stigmatizing cultural views that place a high value on fluency affect PWS and their health care experiences?
The paper presenting this work, “Associations between Stuttering Avoidance and Perceived Patient-Centeredness of Health-Care Interactions” (Mallipeddi, Aulov, & Perez, 2022), was published in the Journal of Fluency and Fluency Disorders in June. The authors found that avoidance of stuttering was a stronger indication of how PWS would experience patient-centered health-care interactions. In other words, it wasn’t about how much a patient stuttered in terms of the observable core behaviors of repetitions, prolongations and blocks that impacted health-care interactions, but how much a patient was trying not to stutter.
This outcome connected with Mallipeddi’s entire life story, and with the mission of Myspeech: Helping people who stutter understand the debilitating nature of avoidance, as well as encouraging providers to look more closely at what a patient is experiencing beneath the surface in their attempts to hide stuttering.
Since matriculating at Harvard, Mallipeddi has only grown his skillset as a social entrepreneur. Additionally, he is more dedicated than ever to Myspeech and to improving life experiences and outcomes for people who stutter. He ended our conversation by saying, “This work on stuttering has helped me to find fulfillment and excitement. I don’t know how medicine is going to factor into it, but I do know that Myspeech is something I am committed to continue building after medical school. I want people who stutter to be my primary focus for at least the next decade, if not my entire life.”
No wonder Mallipeddi feels such determination. The access he is helping to provide to others might well have brightened the darkest days of his young life.
*To visit Myspeech and join the Myspeech community visit: https://myspeechapp.org, and fill out the “Contact Us” form to learn more about scholarship and volunteer opportunities
*Additional disclosure: Allegra Ludwig Michael (author) is a Partner SLP at Myspeech