Navigating the Healthcare World as a Person Who Stutters – James Hayden, Nathan Mallipeddi

James HaydenAbout the Authors:

James Hayden is an HLA technologist, writer, and a person who stutters from the New Orleans area. James is the author of Dear World, I Stutter: A Series of Open Letters from a Person Who Stutters. His work has been published by The Mighty, The Stuttering Foundation, Stamma, Yahoo, and MSN. James has also appeared on several podcasts, presented at the National Stuttering Association conference, the Australian Speak Easy Association Virtual Conference, and was a speaker at TEDxOchsner 2019. He also serves as the chapter leader for the New Orleans chapter of the National Stuttering Association.

Nathan Mallipeddi

Nathan Mallipeddi is an MD/MBA student at Harvard Medical School and Stanford Graduate School of Business. He graduated summa cum laude with honors from UCLA in June, where he received a B.S in Biology and B.A in Political Science. He is a Junior-elect to Phi Beta Kappa and a Fulbright Scholar. Nathan is founder and CEO of Stuttering Scholarship Alliance, a non-profit organization that transforms the access to and delivery of speech therapy services for persons who stutter. He also serves on leadership teams for several international speech disability awareness organizations. Nathan has conducted both cell biology and public policy research at UCLA David Geffen School of Medicine and the Luskin School of Public Affairs, where he published his work in top journals. As the senior policy intern for the City of Los Angeles Department on Disability, Nathan developed transformative public policy initiatives that created jobs for the thousands of unemployed or homeless persons with disabilities in Los Angeles. Nathan aspires to a career as a physician-researcher-policymaker focusing on improving the quality of care and reducing the disparities for marginalized communities in healthcare systems.

Stuttering impacts many aspects of one’s life, including self-image, perception by others, peer and intimate relationships, and opportunities for employment. Interactions within the healthcare system—such as scheduling appointments and communicating with office staff—can be particularly difficult for many people with disabilities such as stuttering due to time limitations and difficulties in talking to authority figures about sensitive issues. Consequently, persons who stutter report discomfort speaking with office staff and physicians, which can result in avoiding healthcare interactions and relying on a third party to navigate the system (Perez et al., 2015). Additionally, many persons who stutter feel tremendous pressure in one-on-one interactions with physicians during a clinical visit, since discussing stuttering and speaking assertively may require rapport and self-acceptance (Perez et al., 2015).

We believe that persons who stutter may be historically marginalized within healthcare systems worldwide.

I (James) am a huge proponent of disclosing one’s stutter. For me, it breaks the ice, lets people know why I talk the way I talk, and gives me ownership over my stutter. Yet, I’ve only disclosed that I’m a person who stutters (PWS) to a medical professional only once in my life. I’ve disclosed indirectly numerous times through the shirts I wore, but I’ve never said to a doctor, “I’m a person who stutters.” I think this is for two reasons. The first is that I’ve had the same medical team for a few years now and they figured it out rather quickly. Secondly, I don’t think it has or should have any impact on the type of or level of care I receive(d).

Unfortunately, I know my second reason isn’t true for everyone. As we saw in Dr. Wen’s article, a simple block was interpreted as a heart attack and he was treated poorly for it (Wen, 2014). That story resonated with me for one main reason: it brought me back to a hit and run I was involved in early 2017. When the paramedics checked me out for injuries (I was fine), I disclosed immediately that I’m a PWS. I wondered what the paramedics would have done had I not told them. Would they have brought me to the hospital? Would they have given me medication that I didn’t need? Would they have said, “you’re fine.”

As a patient, I want to know that the medical professionals are giving me the best care based on what they know about me and not what they perceive about me. I also want my medical professionals to be cognizant that not every patient is fluent and some may need extra time to finish their sentences. I think giving their patients some grace and allowing them to finish their thoughts is one way to provide the best care possible. I saw this in action recently.

A couple months ago I went for my yearly well visit. On my “after visit summary,” I noticed that stuttering was listed under my medical history. I didn’t know that until I saw it on my paperwork. I first  found it interesting because, as previously mentioned, I had never disclosed to my doctors that I’m a PWS. Yet, I’m somewhat relieved that information is there. In the event something happens to me, my doctors would expect me to stutter and not assume that something far worse is happening. This gives me peace knowing that tests and resources will be spent on those that need it and not me.  It also further cements the trust I have in my medical team knowing that they will address what my real issues are and not my perceived issues.

As a medical student, I (Nathan) strongly believe that the majority of healthcare professionals do not understand stuttering. Although medical school curricula are filled with lectures on “one-in-a-million” diseases, very little attention is devoted to teaching future doctors how to care for persons who stutter (Wen, 2014). I remember sitting in my medical school class last fall listening to a physician articulate the importance of his research because the condition affects 100,000 people in the United States—what about the 70 million people around the world who stutter? I always wondered why physicians didn’t take time to understand such a prevalent condition, especially since the consequences are enormous. When I asked a physician about this very question, he told me: “Because people who stutter are just abnormal. They can’t be helped.”

I wanted to learn more. I read about the history of the stuttering community and learned about the decades of maltreatment of persons who stutter by the healthcare system. This dark history engendered extreme discontent within the stuttering community with the medical model, or the treatment of persons who stutter using diagnostic constructs and clinical examinations. I learned that persons who stutter who come in with a broken finger are told to sit down and receive a CT exam and MRI to diagnose the “neurological problem that manifests in the patient’s inability to communicate.” Yes, stuttering has a neurological basis—research has shown a role for astrocytes in the brains of people who stutter. I just wish that more healthcare professionals would sit and listen to our experiences before jumping to conclusions and ordering tests. Later, I learned that my thinking aligned with the social model—the fact that for people who stutter, we need to tackle the systemic barriers and derogatory attitudes that we encounter every day. I’m not saying that there isn’t a role for medicine in helping people who stutter. I believe in the biopsychosocial model—together as healthcare professionals, persons who stutter, and allies, we can focus on providing the best possible experience to help improve quality of life.

The first major step toward achieving this goal is to educate our healthcare professionals. In the United States, the National Curriculum of Initiative in Developmental Medicine started to provide medical students and residents the knowledge and skills to care for persons with intellectual/developmental disabilities. We need a similar movement for people who stutter. And, we need to extend that training to every health professional school—nurses, physical therapists, speech- language pathologists, audiologists, chiropractors, community health workers, and respiratory therapists. We propose that every graduate education program centered on public health or providing clinical training (i.e. Master’s programs or further education) include courses on stuttering. This may seem like a lot, but I’ve seen how top medical schools spend numerous hours on rare diseases affecting less than 100,000 people worldwide. It’s time to spend time teaching our future caregivers how to help persons who stutter. If not, 70 million people will continue to feel that the healthcare systems around the world leave them behind.

Why does this matter? Why should we care about stuttering and how it’s viewed by medical professionals? Why should we care about the experience of a person who stutters at the doctor’s office?  Simple. The more we understand something the better we are for it. Also, the better we understand a condition the better we can help the person who is experiencing that condition.

From a medical standpoint, a better understanding of stuttering and other speech disorders would save the hospital time and resources that would better be used on other patients. From a patient standpoint, the patient knows they are receiving the best care based on their actual symptoms, not their perceived symptoms. Knowing they are receiving the best care possible allows for trust to be built between patient and provider. Trust is also built if the provider best knows how to respond and interact with patients who stutter or have other speech disorders.  As we all know, trust is key in any relationship especially when a person’s health is at stake. Trust allows the patient to not wonder if their stutter is impacting the care they are receiving. Trust and understanding allows the provider to give the patient the best possible care based on what’s actually occurring and not what the provider believes is occurring. Having that trust will make the experience better for the patient and provider, which in turn will accomplish the main goal: treating the patient’s symptoms and chief complaints. 

In addition to one’s physical health, having a provider that understands stuttering also benefits one’s mental health. Knowing they are understood could reduce the amount of anxiety, fear, and/or nerves a PWS feels during a medical visit. In turn, this could lead to a better visit and allow the provider and other medical professionals to focus on what’s important: the patient’s complaints and not the way they say those complaints. 

As we can see, understanding stuttering is critical to a patient’s medical experience. The medical staff knows how to properly respond and interact with the patient. In turn, the patient knows they are being treated based on actual symptoms and not perceived symptoms. The mutual understanding of what’s happening allows for time and resources to be spent on what the patient actually needs. All parties benefit when stuttering is understood and not stigmatized. In addition, the patient’s mental health benefits from the understanding of stuttering. Most importantly, when stuttering is understood PWS are being told and shown, “that it’s ok to stutter.” I’m sure that’s something many of us wish we had heard when we were younger.

 

References

  1. Perez, H. R., Doig-Acuña, C., & Starrels, J. L. (2015). “Not unless it’s a life or death thing”: A qualitative study of the health care experiences of adults who stutter. Journal of General Internal Medicine, 30(11), 1639–1644. https://doi.org/10.1007/s11606-015-3302-x 
  2. Wen, L. S. (2014). A simple case of chest pain: Sensitizing doctors to patients with disabilities. Health Affairs, 33(10), 1868–1871. https://doi.org/10.1377/hlthaff.2013.1371 

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Comments

Navigating the Healthcare World as a Person Who Stutters – James Hayden, Nathan Mallipeddi — 17 Comments

  1. Love this piece guys! Completely agree I’m a huge advocate of disclosure for the greater good but completely understand the risk opening up about any vulnerability does for people. The feeling of freeness when you can disclose matter of factly with no emotion to it is amazing

    Nathan such an interesting observation that these schools don’t focus on stuttering despite the huge prevalence.

    How do you get stuttering to be weighed just as important in the medical curriculum? What are most doctors understanding of the condition?

    • Hi Kunal,

      Thanks for reading our article and for your kind words about it. From my understanding and experience, most doctors have very little understanding of stuttering.

      James

  2. Thank you for opening my eyes on such a relevant topic. As an abled person, I never thought about the struggles a person who stutters might encounter when receiving care in a medical setting.

    James, thank you for vulnerability.
    Nathan, your advocacy for the stuttering community amazes me.

    To both of you, keep doing what you are doing because your actions are improving the life of many people EVERYWHERE.

  3. Hello James and Nathan,

    Thank you for writing about a topic that doesn’t get too much attention in the stuttering world nor in the medical community.

    I had a tough situation 2-3 years ago at my primary care doctor’s office. When you first go into the office for an appointment, after getting checked in, a nurse typically calls you in and takes your vitals and stuff before you see the doctor.

    When the nurse called me into the exam room, on the way she stopped by the dreaded scale. When we got there, she asked me to verify my birthdate. As I said twelve, I stuttered on it: twa-twa-twa twelve. The nurse made a little giggle. I looked at her kind of funny and I continued on to say thirteen, and it came out th-th-th-thirteen. This time she laughed so I said “what’s funny?”

    Before I could go on to say the year, on the first syllable I stuttered and she said “It’s not a trick question”. I went on to say, “really, what’s funny? I stutter, what you’re hearing is me stuttering.” She then immediately said, “well, I wasn’t laughing at you”. I then said, “who were you laughing at? Besides you, I’m the only one here.”

    Somehow I got through that moment, went into the exam room, expecting her to follow to take vitals and she just left. Without any explanation, a NP came in to do my vitals and get me ready to see the doctor.

    I had all I could do to keep myself together. I was upset, my face was flushed and I felt my chest tighten and my eyes swell up. I hardly said anything while the doc was in there, we did what we needed to do and I left.

    When I got home, I cried and stewed over this for a day and kept thinking how inappropriate this was – a medical professional laughing at a patient who stutters and made the dumb comment about the trick question.

    The next day, I looked up the main webpage for the practice, and looked for information about values, patient respect and how to contact them.

    I decided to call the CEO’s office (I really did) and spoke with an admin assistant, explained why I was calling and that I wanted this addressed on a high level within the group. I said I was making a complaint. I was referred to the next level down, and then someone in quality assurance. Through this, I said I wanted to see some type of training on disability etiquette and stuttering for the medical practice.

    Long story short, I met with two HR professionals, over lunch at a restaurant. They had already heard the story and were interested in next steps. I was in regular contact with them and the Quality Assurance department.

    We eventually made a 10 minute training video on hidden disabilities and stuttering specifically. The training video would become part of “new hire” training for all staff joining the practice.

    I was pleased. Do I know if it’s still being done today? No, I don’t. But I feel like they’ll remember that scenario as it was just about a year of communicating back and forth about the issue and the making of the video.

    At one point, I received a call from the admin in the CEO office to acknowledge they were aware of what I had done.

    She also said, “I’ve never seen someone so passionate and persistent”.

    That’s what we have to be if we are going to make changes.

    Pam

    • Hi Pam,

      Thank you for sharing your story with us. I’m so sorry you went through that. The more I read your story the angrier I became. Yet, I’m so inspired by the way you handled it and turned such a negative experience into a positive experience and helped future PWS who go to that practice.

  4. Hello James and Nathan!

    My name is Sophia and I attend Cal State University, Fullerton in Southern California. Reading your paper gave me valuable insight on how we should advocate for stuttering awareness, especially within the healthcare field. It is a shame that even esteemed medical professionals hold dismissive attitudes towards PWS, but I know the future is bright as long as we continue to call for equity when treating patients who happen to stutter.

    After reading your paper, I do have a question I would like to ask to both James and Nathan. How were your experiences with health insurance as a PWS? Health care coverage in the United States is a universal issue that impacts everyone, especially POC. If you are okay with disclosing your thoughts (because I understand finances and health care can be a sensitive topic), how was your experience with receiving treatment under your health insurance, especially as a PWS? Have you received stuttering treatment, and if so, was it covered entirely, partially, or not at all?

    Thank you so much for sharing your experiences with us, and please continue to share your voices around the world!

    Sophia H.

    • Hi Sophia,

      Thanks for taking the time to read our article.

      Great question. I went to speech therapy as a kid (ages 5-11) and then again as a college student (ages 20-22). I’ve honestly never thought about this topic. I assume the speech therapy I received as a kid was covered by my parents’ insurance. I went twice a week for about 6 years.

      The speech therapy I received in college was not covered by insurance. I went through my university’s speech and hearing department and received speech therapy at reduced rate because I was a student. I went once a week for four semesters (fall 2013-spring 2015).

      Currently, I’m not in speech therapy.

      James

      • Hi James,

        Thank you for your response! I really appreciate your insight regarding insurance and speech therapy. I am glad to hear that you were able to receive speech therapy through your university at a reduced rate, since treatment should be accessible to all.

        Again, thank you for your response, and I wish you all the best!

        Sophia H.

  5. Hello James and Nathan, I never thought of the trouble a PWS would have when in a medical setting. Stuttering should be known throughout all the healthcare fields. There needs to be more awareness on stuttering in the medical fields and more people need to advocate for it. Thank you so much for sharing this information with us!

    Camille

    • Hi Camille,

      Thanks for reading our article.

      Exactly! Stuttering needs to be better represented and understood in the medical world. We hope this paper starts to get the ball rolling on those conversations.

      James

  6. Hello James and Nathan,
    Reading your article was very insightful! It never occurred to me how stuttering can affect a person in the world of medicine. It is very true that stuttering affects every single aspect of a person’s life. I also do agree that medical schools should spend more time teaching medical students about this because of how common stuttering is. I believe this will allow people in the medical field to be able to provide a safe environment for PWS.

    • Hi,

      Thanks for reading our article. We agree with you and we hope this article starts the conversations that need to be had in the medical field.

      James

  7. Hi James and Nathan,

    Thank you so much for writing about this topic. I know that navigating healthcare as it is is a complete pain for anyone, and having a greater insight to where American healthcare is yet failing its citizens was incredibly helpful. I especially appreciated the point you made on mental health and just much good it would do for a PWS to have healthcare providers that have a good understanding of what goes on with stuttering.

    Sincerely,
    Madeleine C.

    • Hi Madeline,

      Thank you for reading our article. I agree that if the medical world better understood stuttering, then one part of going to see a doctor would be a bit easier.

      James

  8. Hi James and Nathan,

    I really enjoyed this article you all wrote and I learned a lot about the kind of difficulties people who stutter may face with medical professionals. It’s striking to hear how some medical professionals may define a PWS by their stutter, and put that person through unnecessary tests and stress. Helping medical professionals understand how to talk to people with communication difficulties and explaining that something as simple as waiting a few more seconds for a PWS to expressive themselves can go a long way.

    As someone who is aspiring to be an speech-language pathologist, what are some things SLPs can do to build trust with a PWS?

    Jamie

    • Hi Jamie,

      Thanks for reading our article.

      Great question! As you know, building trust with someone takes time. What helped me gain trust was knowing that my SLPs were there to help me and cared about my well being. I went to speech therapy as kid and as a college student. As a kid, this meant incorporating my interests into our lesson plans. As a college student, this meant letting me set my own goals for what I want to accomplish in speech therapy.

      In both cases, the trust was also built by confiding to them. When I was kid I vented about whatever was bothering me that day in 3rd grade. As a college student, it meant talking about how stressed I was with the million things I had going on that week or talking about my fears associated with stuttering. Knowing that I could talk to them about anything and everything helped me trust them.

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