Proposal

When Does the Brain Speak for You?

A Capstone Project Proposal

Why does this topic matter to you? Why does this topic matter to a broader audience?

I have both lived with noticing my brain and without noticing my brain. When I’m cooking, cleaning, weightlifting, I’m on autopilot—even if my brain is actively on. But, when I struggle, or watch others struggle, I can feel my brain. What does this mean? 

My ESL teacher placed her wrinkly hands on top of mine. I tilted my head down, hiding my tears. I had been stuck on the same word for nearly ten minutes. I tried again. My mother tongue clashed with my new language: English.

Every word I spat out seemed foreign and unnatural. My mouth had barricaded my words, like immigrants struggling to leave East Asia. Mrs. Min smiled at me, her reassuring smile tinged with worry. Her crescent shaped eyes always had a story behind them, yearning to be told to her small class of five. However, this time, I didn’t quite enjoy the story. “Looks like you’re going to have to stay for another year here, Mia.” So, I was placed in ESL for another year. And another year after that. I became indifferent to the regularity of my teacher pulling me out of class to see Mrs. Min, much like my resignation about my stutter. I felt defeated. It was hard to master the language, add to my vocabulary, and overcome the stutter all at once. The combination felt exhausting. It trailed behind me wherever I went—the community pool, my mom’s salon during Take-Your-Kid-to-Work-Day, and the busted fruit mart at the corner of our neighborhood. 

Usually, children would be scared of rollercoasters, monsters under their bed, or daddy long-leg spiders. For me, speaking became my biggest fear. 

My biggest childhood goal was to get rid of my stutter. This topic matters to me specifically since the brain has shaped my life in ways that feel both personal and impossible to ignore. I have lived with questions about voice and communication, especially through my experience with a speech impediment. That experience made me think about who in society gets taken seriously and who doesn’t, who gets dismissed, or who gets underestimated. It also made me think about how confidence is not something everyone is simply born with. A lot of the time, our brain needs training in order to be confident in itself. It is something people build through time, support, and practice. I’ve experienced this first hand, as someone with a speech impediment. At the same time, I have seen how brain changes can affect people other than me. It can affect a person’s memory, planning, and personality. When those changes happen, people are often treated very differently or even alienated. My grandma on my dad’s side has suffered from Alzheimer’s and it has affected his family deeply. Where she cannot even remember her daughter or what she ate that day. But, a lot of people don’t notice that it’s not her fault. It’s her brain telling her that some parts of it are dying. I’ve watched clients during my legal internships lose autonomy very quickly, once others decide they are incapacitated. 

“Am I going to jail?” He asked. 

He was sitting across from us in a worn rocking chair, at the assisted living home, his eyes locked on mine. My client, an elderly man with advanced Alzheimer’s, clutched the edge of his seat. We had traveled for one and a half hours, early in the morning to beat Boston traffic — to visit him since he couldn’t drive. Every five minutes, he repeated the question, one after the other, like he was suspecting his doom of incarceration. We had introduced ourselves as visiting from the Legal Services Center of Harvard Law School to help with his estate plan, but all he heard was legal services and attorney, and all he felt was fear. 

His name was on our intake sheet. His estate plan had been delayed. That was our official reason to visit him. But in the two hours we spent with him, he did not ask about wills or documents, despite us gently urging him to. Instead, he asked for his wife. She had died a month earlier, but he didn’t remember. He still called the hospital everyday, begging for her updates on her condition. Eventually, the staff had to take away his phone. Those two hours passed slowly and then all at once. We were told by his nephew to avoid the topic of his wife, so when he asked us where she was, we hesitated. I recalled one of the very important rules of working in law; to have the sole focus be your client. We said we weren’t sure, we didn’t know her, and that our focus was on his estate. And then we sat with him in that not-knowing. The legal questions we had came with—questions about distribution of assets, his old estate that is no longer valid—had chipped away. What remained was his confusion, his grief, his fragile mind.

Although this is devastating (which is an understatement), it is the law. I have seen how fast someone’s dignity can be threatened when they cannot communicate quickly or clearly. These experiences pushed me toward prelaw because I want to understand how systems decide who is competent and who is not, and I want to work in a field where protecting someone’s rights does not depend on how well they can perform cognitively (even though that is the harsh reality—people cannot make decisions if they don’t have capacity). My central question for the audience is:

• When does the brain become visible in your life? 

• What changes for you when you finally notice it?

• When your brain starts to deteriorate, do you lose your identity?

 I want my audience and readers to ponder about the moments when you can actually feel your brain functioning in real time, like struggling to find words, freezing under pressure, forgetting something important, or realizing your personality and patience change when you are stressed or exhausted. I also want them to consider how often we judge ourselves, and other people, for things that are shaped by the brain, such as speech, attention, memory, emotions, fear, personality, decision making, without giving those experiences the respect they deserve.

This topic also matters to a broader audience because everyone is affected by the brain, whether they like it or not, even if they do not think about it every day! People have family members with dementia or brain injuries, they have friends who struggle with speech, anxiety, or processing speed. People work in schools, hospitals, and companies where communication and making a decision happen under pressure. In those settings, it is easy for impatience and bias to shape how people treat someone who needs more time or support. This topic really encourages people to slow down and rethink what they assume about someone’s intelligence, credibility, and worth. Also, it matters since legal and medical decisions about capacity and autonomy affect real lives. It is my job to educate students (the audience) on how a person can lose control over important choices because others decide they are not capable. When that happens, the consequences are very serious. The goal of this project is not only to notice part of their brain, but also to help readers see that brain differences and brain changes can erase personhood and/or identity. They change how someone moves through the world, and they change what support someone might need. They should not take away a person’s right to dignity, respect, and fair treatment.

What intellectual and/or artistic communities are engaging in conversation around this topic? What are they saying about it?

Several intellectual and artistic communities are already in active conversation about this topic, and they approach it from different angles since they usually are from different professors. Neuroscience and neuroethics professionals talk about how brain science shapes the way we think about identity, free will, and personhood. They argue that changes in the brain can change behavior and personality (a direct relationship), but that this does not mean a person loses moral value or dignity. They also raise concerns about how neuroscience language can be misused or misinterpreted in real life, especially when people treat brain scans or diagnoses like they automatically explain who someone is or what they deserve. At the same time, disability studies professionals and disability rights advocates focus on how society treats people whose brains and bodies function differently. They emphasize that the biggest harms often come from barriers, stigma, and stereotypes rather than the diagnosis itself. They push for language and systems that protect their access and respect, and they challenge the idea that a person’s worth depends on speed or independence.

There are also professional communities that deal with these questions in very practical ways, such that they work with these individuals everyday. Speech language pathologists and researchers who study stuttering, study how speech differences affect daily life, confidence, and social judgment. They often point out that stigma can be as painful or hard as the speech struggle itself. Dementia researchers and caregivers discuss how cognitive decline changes communication and decision making, and they argue that people still have preferences and values even when memory and reasoning are affected. Legal professionals –such as attorneys and advocates–often work with one’s capacity, consent, and autonomy, and many of them are asking how the law can protect people without erasing them. They discuss approaches like supported decision making and they question systems that remove autonomy too quickly or without enough effort to include the person. On the artistic side, writers and digital storytellers explore the brain through memoir, illness narratives, and interactive media, which is definitely worth exploring and can be an inspiration piece for my capstone. They often argue that narrative can make complicated science and ethical dilemmas more accessible and feel human, and that storytelling can build empathy and help audiences understand experiences that are hard to describe with facts alone.

In what forums and what genres are these conversations taking place?  

These conversations are happening in many forums and different genres, which is part of why the topic feels relatively new, current, and reaches a variety of audiences. In academic forums, I’ve noticed it mainly being publications by scholars and researchers, in peer reviewed journals and edited books in fields like neuroscience, disability studies, psychology, and law. These genres include research articles, literature reviews, and case studies that focus on topics like identity, autonomy, consent, stigma, and cognitive decline. Conferences and workshops also play a role, such as events hosted by universities, medical centers, and professional associations where researchers and clinicians share new findings and debate ethical questions. I remember having conferences/speakers/Q&A’s during my internship at HLS, where many doctors joined us to discuss how to talk to clients with neurodegenerative diseases or cognitive decline. In legal forums, these discussions are seen in law review articles, policy reports, law firm blogs, and others, that examines competency standards, decision making, guardianship (which I worked with during an internship), and patient rights. Government and nonprofit forums are also crucial, because advocacy groups and nonprofits publish public reports and guidelines that shape how people understand dementia, communication disorders, and disability rights.

These conversations also take place in public forums where it’s more personal and accessible for the public. In journalism and popular media, you see magazine essays, newspapers, podcasts, and documentary projects that focus on experiences with stuttering, dementia, brain injury, and mental health. In artistic genres, the topic appears in memoirs/autobiographies, personal essays, nonfiction, poetry, and podcasts that explore how the brain affects identity and relationships. Digital spaces are another forum, including social media, advocacy campaigns, and online communities where people share experiences and challenge the stigma around the subject. In digital and interactive genres, creators build websites, multimedia essays, and interactive data or story maps that combine narrative with visuals, sound, and clickable structure. This is part of why an interactive narrative capstone fits well, because it joins the same digital forums where people already learn and reflect on brain related topics. 

What research methods, genres, techniques or media will best enable you to join the conversation effectively? Which will best serve your topic? (& Goals!)

The research methods and techniques that will best help me join this conversation will be a mix of scholarly research, ethics, examples, and narration of my own experiences. I plan to do reading of sources from neuroscience articles, neuroethics and disability studies, speech and hearing research, and legal information on capacity and decision making. This will help me ground my personal stories in ideas that other researchers and professionals are already discussing. I also want to use narrative research techniques like “reflective journaling” and "scene based writing” so that the project evokes pathos and is personal to me, and specific instead of becoming a general opinion piece. I also plan to use digital methods, such as building the website, testing whether users can navigate it easily, and revising based on what is confusing or inaccessible. Good accessibility will help the project reach a broader audience.

The genres and media that best serve my topic are creative nonfiction and multimodal digital storytelling. I hope that my personal narratives will be a success because it makes neuroscience and legal ethics feel human, and it invites empathy. At the same time, I can add short research moments and examples from pop culture within each section so the project clearly connects to the conversation. The interactive website format is also a strong fit because it allows readers to explore topics in a non linear way, and it shows/represents the way the brain is made of connected systems rather than one straight path. A clickable brain model can guide readers into different themes like speech and credibility, executive function and autonomy/independence, and memory and identity. I will be sure to use techniques like dialogue, detail, repetition, and pacing that will help the writing flow. In the 3D brain model, I hope to include visual labels, definitions, and/or captions that can support understanding for different learning styles. Overall, a mixed approach (or “multidisciplinary”–thank you Kia for that word!) that combines research, ethics, narratives, and interactive design will help me join the conversation in a way that is both thoughtful and accessible.