Schizophrenia affects 1 in 300 people worldwide, and individuals with the mental health condition can struggle with symptoms such as hallucinations, delusions and disorganized thinking. One of the most complicated and difficult to treat mental illnesses, schizophrenia can also carry a heavy stigma. People with schizophrenia can feel judged and shunned by popular media, their culture, their family and even their own healthcare providers; research shows that mental health providers stigmatize schizophrenia more than any other mental illness. 

Physicians and researchers are working to break down the stigma around schizophrenia and find better ways to treat the condition. Jacelyn Biondo, PhD, MPH,  an assistant professor in the Department of Health Science and Clinical Practice is one of the people leading that charge, and she’s incorporating the unconventional method of dance therapy to do so. In this conversation, Dr. Biondo shares her deeply personal experiences working with people with schizophrenia and how she thinks the field of schizophrenia treatment needs to evolve.  

How would you describe your research to the person riding the elevator with you? 

My research is rooted in establishing a sense of community, belonging and intimacy for individuals with schizophrenia. Society is quick to discard people due to stigmatization, fear or simply not understanding. My work also often incorporates embodiment through dance therapy and aims to provide equitable, justice-driven collaborative research that fosters a rehumanization process. We all deserve to be seen, heard and respected.  

What problem does your research try to solve?   

I hope that my research not only brings awareness to and amplifies voices of individuals with schizophrenia, but also that it opens pathways for more inclusion and justice for people with schizophrenia. My research is a direct avenue for my advocacy work. I want to dispel the misconceptions about illness. I also deeply understand the power of the body and how dance and movement inform our processes. 

What first sparked your interest in dance therapy? 

For over a decade, I was a dance therapist at an inpatient psychiatric hospital on a unit where adults were involuntarily committed. I remember it as if it was yesterday. I held the door open for my patients to enter, as I always did. One woman seemed to float past me, openly dialoguing with the voices in her head, gesticulating wildly, not noticing me as she entered. We engaged in a group dance therapy session, and at the end of our session I asked if there was anything anyone wanted to share about our time together. This woman looked me directly in the eyes and said with great clarity, “This is the first time in as long as I can remember that I feel like my brain can breathe…thank you for that.” That night I went home and began looking at PhD programs because I knew I had to become a researcher to understand precisely how and why she had that experience. I also knew that this was a widely under-researched population and wanted to provide opportunities to learn from and with people with schizophrenia in research as I had in practice.   

Why do you believe dance therapy is so powerful? Are you working on any new dance therapy projects now? 

I think dance therapy is magical (but also deeply rooted in scientific theory). I want my research to help people with schizophrenia have a more reciprocal and intimate relationship with their body, so they can extend that to relationships with others as well. I’m currently collaborating with two researchers in psychology and neuroscience to bring more attention to the body and movement as they pertain to conceptualizing, diagnosing and treating individuals with schizophrenia. We’re in the beginning phases of planning our research, but I’m excited to have a team to move this research forward.  

What other research are you working on? 

I’m currently exploring the lived experience of individuals with severe mental illness and substance abuse disorders as it pertains to receiving healthcare services. I’m also looking at MD and PA students’ perceptions of their own stigmatizing behaviors when treating individuals with severe mental illness — in other words, the attitudes, stereotypes or prejudices that they may carry. I’ve learned that there is a divide between how MD and PA students perceive their own stigmatizing beliefs and actions, and how individuals with severe mental illness and substance use disorders actually experience those actions.   

What sort of divide? 

 There’s a communication breakdown happening. The healthcare students feel they’re being helpful; however, in practice, individuals with mental illness can perceive their actions as demeaning. There is a distinction between pity and empathy. I believe once you understand someone better, you move towards them with empathy. From the perspective of the person receiving services, if you feel seen and understood, you become less defensive. This anti-stigmatization educational program will likely include dance therapy experiences to foster kinesthetic empathy, or  empathy experienced through the body. In this space, everyone can explore how to develop healthier and more authentically empathic relationships. 

What is the best memory you have from conducting your research?  

There was one research participant, in particular, who really was so special. He had some of the highest symptom acuity I had seen: he was actively and consistently talking to voices in his head, he was extremely paranoid and wary of interactions with others, he believed he was being recorded by hidden cameras in the ceilings, and both his thoughts and his movements were hyperactive. Historically, his symptoms would have excluded him from research, but I was delighted when he expressed interest in participating in our research study and was randomized to the dance therapy intervention. After the dance therapy session, we interviewed patients about their experience. I remember watching his recorded interview with awe. The way he articulated himself and his experiences were remarkable. He spoke about his transformative experience, likened himself to a metamorphosing butterfly, and exhibited such pride in his role in our group session. He reminded me of why I do this work…and of how everyone told me that I would not get any “good data” from people with schizophrenia because they were unreliable. I think about him all the time. Why do researchers get to determine whether someone has the capacity to be reliable in reporting their personal experiences? Who gets to restrict or deny someone’s life experiences?  And what harm are we perpetuating by making this determination?
 

What’s a myth about your study subject?  

One myth that I continue to try to dispel is that individuals with schizophrenia are dangerous or aggressive. In fact, individuals with schizophrenia are more likely to be victims of violence rather than perpetrators of violence — they are 75-120% more likely to be a victim of violence than the general population.
  

What’s something you’re passionate about outside of your research?  

I’m passionate about learning. I’m a lifelong learner and would be a student for the rest of my life if I could. I love taking classes, reading and engaging in thoughtful conversations. It’s been a long journey to find my love of learning, but at this point in my life, I’m obsessed with learning.