Amy Gaeta, a PhD Candidate & Advocate for the Neurodivergent Community

Amy Gaeta

By joining autism and neurodivergent communities, I’ve gained such a stronger and more confident sense of self! Amy Gaeta

An interview with Amy Gaeta by Ron Sandison.

Understanding neurodivergence was key to my success. As I discovered how my mind processed information and became an expert on autism by interviewing hundreds of individuals on the spectrum and top experts in the field I learned to interact socially and maintain gainful employment.

Amy Gaeta’s journey with neurodivergency provides clarity to young adults recently diagnosed with autism, who struggle with the thought, ‘Why Am I so Different’ to believe that different is beautiful and neurodivergent people’s creativity transforms our world with innovative ideas and the arts.

1. What does it mean to be neurodivergent?

Neurodivergency is a concept that acknowledges the vast, biological diversity of the human mind and cognitive behaviors. It is used in contrast to neurotypical. While all human brains have differences, neurodivergence often refers to people with one or more cognitive, learning, and development disabilities, which includes mental illness. To settle common a common misconception, neurodivergence is not a synonym for autism, ADHD, schizophrenia, or any single experience. Neurodivergence is, like autism, an infinite number of experiences that exist on a spectrum.

I treat it as a concept as well as an identity. So, I would never call someone else neurodivergent unless they identified as such. There is also a large neurodiversity movement.

To me, being neurodivergent means learning to be who you are, with all your so-called mental “imperfections” and “problems.” It is embracing the beautiful but at times very difficult, fact that I perceive the world differently than everyone else. In a society where we are expected to conform to the norm, neurodivergency is critical to respect. Important to note is that to me, being neurodivergent does not erase the pain and challenges that come with being neurotypical in a world that is built for neurotypical minds. Due to the commonalities in symptoms and social experiences, and thus (often) increased awareness to access needs and differences, I find that neurodivergent people tend to get along well together.

2. When did you begin to identify as neurodivergent?

Two years ago when I joined disability communities and devoted my research to disability studies. Neurodivergency gave me a vocabulary through which I could finally understand my world and how my brain works within it. I wasn’t ashamed ever either, and that’s due to the lovely and warm neurodivergent and other disabled friends who welcomed me and valued me.

3. What was your childhood like being neurodivergent?

Since I was unaware of my neurodivergency until reaching adulthood, my childhood was “normal.” I did well in school and was generally not shy, but I had trouble socially and often preferred being alone and letting my mind wander in books. I was creative and always loved to write, even if I wrote rambles. Words and ideas came to my head and I had no idea where they came from. I was also constantly rehearsing conversations in my mind, and likewise speaking aloud to myself.

4. Do you experience sensory issues? If so what are they?

I have sensory limits when it comes to lighting and sound especially. It hurts when I heard loud noises unexpectedly (such as sirens). Sometimes, after a high sensory environment (i.e. a concert), I need to lay down in the dark for several hours until my senses are less fragile.

5. How did your parents support and foster your unique abilities?

My parents have been accepting of me and have always supported me and my passions, as long as I was healthy and safe. I know they are each proud of the person I’ve become and who I am in the world. They are each open to learning more about neurodivergence.

6. What was your greatest challenge transitioning into adulthood?

In my last years of high school, I developed a disordered relationship with food and my body. Today, I realize this was largely the result of me being unsure of who I was and do with my life. Because I didn’t know myself and blamed all my social issues in my life, I was vulnerable to think that my body image defined me. It is unstated how often eating disorders are within neurodivergent people. If given the opportunity, I’d love to reach this topic more.

7. What sparked your interest in academics?

School has consistently been my favorite place. I love to learn and think out of the box. So, I knew that if I had a career working in a corporate office or as a tradesperson, that I would be unhappy. I need a space and community where I can dream up ideas that currently seem impossible. Probably due to my lifelong appreciation for fiction and poetry, my passion is creating things that are not yet real or realized.

For as long as I can remember, I have wanted to somehow make the world a better, less hateful place. My best skill is writing, and once I got the chance in graduate school, I found that teaching brought me more joy than anything else. Although I love academia, I have experienced how it can be extremely ableist in that most academic standards assumed a normative, non-disabled body, and mind. While there has been important progress, thanks to disability rights activists, there is a long way to go for teaching and learning practices to become truly accessible to everyone. I partly teach because I am trying to be part of that change.

8. What university did you attended and how did you choose that school?

For my first degree, an undergraduate BA degree, I attended the University of Massachusetts Boston. I chose UMass because it’s an amazing state school and it’s close enough to home that I could commute. I knew how expensive college could be, and I didn’t want to be over 100k in college loan debt. My family doesn’t have that kind of money. Even more, UMass Boston provided me an education that’s just as good as one I would have earned at Harvard or Yale. There are tons of great schools, but the ones with prestige and money get all the attention.

For my second and third degrees, I am attending the University of Wisconsin-Madison, where I’ve earned my MA in English Literary Studies, and will soon have my Ph.D. in the same field in just a few months (May 2021)! I applied to tons of top schools, but UW stood out because they embraced creative, out-of-the-box thinking and two of my favorite scholars taught there: Dr. Ellen Samuels and Dr. Jill Casid. Even more, UW-Madison has one of the greatest English departments in the world, it’s always highly ranked. I was very excited when they offered me a full ride and health benefits to attending their program. Now, I am happy to say that Jill is one of my dissertation advisors and mentors (along with co-advisor Dr. Leslie Bow), and Ellen is a key member of my dissertation committee. I am beyond honored to learn from them.

Amy Gaeta

9. What did you like best about college life?

Having the freedom to choose my own schedule and classes. I also loved not feeling socially obligated to make friends or attend social events. It gave me space to explore new interests and dive deeper. During my undergraduate degree at UMass-Boston, I came into my own as a person and thinker. High school was tough, but college allowed me to flourish.

Being at UW-Madison for my Ph.D. was intense at first. It took me two years to truly be able to manage the workload and meet deadlines without stressing myself out into burnout. It took a massive toll on my mental health. With new, amazing friends and a fantastic medical team, I was able to come out of burnout and develop a healthier relationship to graduate life, setting many more limits for myself.

10. What were your biggest challenges in college?

Making friends. Always a challenge for me. College is so big, so it is difficult to get to know people. Looking back, I wish I became more involved with student activism and the art students. Since I lived at home, I didn’t go to any dorm parties or campus events. At the end of the school day, I was socially drained and my senses were at their limits, so I just wanted to go home, crawl in my bed, eat Goldfish, and watch Buffy the Vampire Slayer reruns. So, that’s what I did most days unless I had work or school work.

Amy Gaeta

11. What topic are you doing your dissertation on? How did you choose this topic?

My Ph.D. degree technically in English-Literary Studies and Visual Cultures, but I take an extremely interdisciplinary approach to these broad views. My dissertation is on the culture surrounding drone technology, and how it communicates and shapes ideas about gender and disability. I focus on related artwork, novellas, advertisements, drone manuals, hobby forums, and government documents. Mainly, I am trying to determine how positive relationships with drones change standards definitions of humanity. At its heart, it is a project about what it means to be human today when we are all dependent on and integrated with technology.

This topic found me. I would read about overseas drone warfare strikes in the news, and yet I would see kids playing with drones at the local playground. Fascinated, I became curious about what this distinction said about how we form relationships with modern technology, drones being my primary example because they change from being weapons to play toys.

12. What three tips would you give to young adults on relationships?

Set any boundaries and express your access needs. If a person won’t commit to meeting your access needs or respecting your boundaries, then they are not worth your time and emotional energy. And don’t undervalue yourself—you are worth it. We all deserve respect and care.

Stay connected with people that raise you up, actively support your goals, and energize you. If you feel mentally exhausted after talking or hanging out with them, this may be a warning sign that they are not best supporting your access needs or they are emotionally draining you. Perhaps discuss this with them before ending the relationship.

Find people, friends, or romantic partners in whatever ways you feel comfortable, safe, and respected. Don’t be afraid to start talking with someone electronically at first, such as texting or social media. Just be safe about what you share and if you meet them in person. If you never meet in-person, I think that is fine. Virtual relationships can be just as valid and fulfilling as in-person relationships. It all depends on one another’s needs.

13. What advice would you give to young adults struggling with employment?

Finding employment is difficult for everyone, but especially when you’re a young adult who is also neurodivergent, or you have another disability. There are so many good resources out there that help disabled people find work because, for us, it can be especially hard to find places where we will be completely welcomed. Ask for help during job searches and applications. Ask people you trust and that know you well. Many schools and public libraries have centers and workshops dedicated to helping job seekers.

Don’t let anyone job shame you. Whether you work at a thrift store folding clothes or part-time at a gas station, all labor deserves respect. Even if you have a college degree, and all you can get at a first is a grocery store job, that is okay!!! It’s a hard world and we need to get by. Remember, your job does not define you. Only you can define yourself.

Network. Ask classmates, teachers, friends, parents, etc if they know anyone who is hiring or any businesses that might need extra help. I got my 2nd job at a local family health food store, through my dad, who was close friends with the owner. My dad got me an interview with the owner, who agreed to bring me on and keep me as long as I could keep up with the work. So, I had to prove myself at the job, just like anyone else. Turns out, it was a great fit. I loved that job and my coworkers. I worked there all through my undergraduate college days.

14. Share a humorous story from your life.

Oh, I have so many. I am always laughing and making jokes, especially in good nature about myself haha. A few months ago, I went to the doctor for a small running injury affecting my knees. So, naturally, the doctor needs to examine my knees. Problem? I thought it would be a great idea to wear leather pants to the doctor’s office. Oh my, I was laughing so hard when I realized how much I had totally missed the mark. Completely was not dressing for the occasion. The doctor was laughing too, and eventually, we found some patient shorts for me to wear so we could do the knee examination.

15. How can businesses become more neurodivergent friendly?

I’ve been thinking about this especially during the pandemic because masks and disruptive shopping routines can cause issues for neurodivergent people. Here are a few ideas on how they can be more friendly to neurodivergent people.

• Set low-sensory shopping hours
• Actively recruit and hire neurodivergent people
• Ask neurodivergent people for input when designing a store, and pay them for their time and knowledge (no free labor, ever)
• Offer no-contact delivery and/or shipping options
• Welcome special requests
• Enable customer support via email or chatbox, not just audio phone (this is also much more Deaf friendly!)

16. How has the COVID-19 pandemic impacted your life and college studies?

The pandemic has made me realize how much we need one another, myself included. I’ve always been an introvert, not too social. Since I live alone with no pets, the months and months of isolation has affected my mental and physical health. I never knew how much my bodymind truly needed physical touch and presence. The first person I saw after the pandemic started in the U.S., 3 months in, was my dad. I hugged him and it felt like my whole body was crying with relief, feeling that care and warmth. Then, I was crying!

My studies have been stalled a bit, but work has been a great distraction to stay away from all the gloomy news.

17. How do you advocate for neurodivergent acceptance?

Whenever I think about supporting a social issue, I ask myself “what skills and capacities do I have that I can best use to help this issue?” And for me, that is writing, teaching, and disclosing my experiences. I continue to take opportunities to write a personal essay and give talks about my experiences as a neurodivergent woman working in academia. At first, I didn’t think anyone would care what I had to say or had been through. After writing a few essays on chronic pain and eating disorders, the response I got from the disability community and beyond was astounding. Their generous responses helped me to realize how I could advocate for neurodivergent people: by being unapologetically myself and welcoming others to do the same.

My teaching is a central place where I advocate for neurodivergent people by experimenting with accessible design and trying new practices of communication, social interaction, and composition that welcome all different types of learners. In tandem, no matter the class, mental and physical health are central topics of discussion. My students know from day one that I aspire for us to build an accessible community together and that their mental health and needs are more important to me than any class assignment. So, my English courses are not typical English courses. Lastly, I advocate for neurodivergent people through education, not just in formal classes, but also in every aspect of my life: family, friends, social media connections, colleagues, and more are made aware of neurodivergent rights, experiences, and needs early on after I meet them. By raising awareness, I believe we can also raise empathy and action toward accepting neurodivergent people in all our diversity.

18. What are some of your future goals in life?

I have so many! Here a few by category:

Personal Goals:

• Begin sculpting or other forms of art-making again
• Move to the UK or Ireland
• Go to China, Cambodia, and Japan with my mom (we’ve discussed this trip for years). She’s always wanted to see the pandas in Chengdu, China, and I want to make that happen for her
• See as much of Eva Hesse’s artwork in-person as possible
• Attend a football (soccer) match at Celtic Park in Glasgow, Scotland

Disability Justice Goals:

• Contribute to building more virtual and in-person communities around neurodivergence
• Develop and incorporate more accessible teaching and learning practices for university instructors and students
• Help hold institutions and research review boards accountable for conducting and approving unethical studies and experiments on disabled people, especially autistic children who do not consent
• Work to normalize the validity of self-diagnosis, particularly for people who cannot access diagnosis processes and/or those who have been mistreated by healthcare workers before and no longer feel comfortable using those services
• Support organizations and groups that work to address the source and effects of mental health issues in prisons

Professional Goals:

• Publish my first poetry collection (I’ve been writing, publishing, and performing poetry for 10 years).
• Secure a university faculty job that allows me to teach and research topics about disability, gender, and how technology and society interact.
• Open a research center focused on creative approaches to technology & science at the university
• Turn my dissertation into a book manuscript to be published
• Develop my second book project, which will be on Artificial Intelligence, neurodivergence, and the global mental health crisis

Amy Gaeta is a Ph.D. candidate in the Literary Studies and Visual Cultures (doctoral minor) programs at the University of Wisconsin-Madison. She takes a feminist disability approach to contemporary applications of science and technology, mainly human-robot interactions (HRI) and digital surveillance. Amy’s dissertation, “Drone Life: A Feminist Crip Analysis of the Human” asks how the category of the human changes amid the spread of drone technology in which passivity and interdependency are valued and accepted, a contradiction to the able-bodied individual liberal subject.

In addition to research, Amy is a practicing poet, professional editor, disability rights activist, and editor of the Unseen Zine from the Invisible Disability Project. She has published on a wide range of topics, including disability treatment processes, the ethics of algorithms, emotional labor, and higher education, the politics of international sport, and more. You can contact her at: agaeta@wisc.edu
Twitter: https://twitter.com/GaetaAmy
Website: https://aegaeta.wixsite.com/website

Ron Sandison

Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of America. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House and Thought, Choice, Action. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes.

He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016. You can contact Ron at his website www.spectruminclusion.com or email him at sandison456@hotmail.com.

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