This panel presentation occurred during the 2022 South Southwest MHTTC First Episode Psychosis conference on June 1st. This panel was moderated by Cecilia McGough and the panelists were representatives from Students with Psychosis including Cecilia Joyce, Rei, Daniel Nepveux, Deanna, Katie Sanford, Maddie Jiles, and Vera Muñiz-Saurré
Presentation Summary: There is no one-size-fits-all experience for a student living with psychosis. This session had a panel moderator and seven Students With Psychosis members from the student lived experience perspective. Students With Psychosis is a 501(c)(3) nonprofit that empowers student leaders and advocates worldwide through community building and collaboration. The panel included a mix of storytelling and discussion followed by Q&A. The discussion and storytelling highlighted intersectionality, academic accommodations, and action points on how to transform community, workplace, and educational environments to support and empower students living with psychosis.
Cecilia McGough (they/them/theirs/she/her/hers)
Founder and Executive Director
Students with Psychosis
Cecilia McGough is a New York City-based mental health activist, nonprofit executive director, consultant, and former radio astronomer. McGough is autistic who also happens to have schizophrenia but does not let her diagnoses define her. McGough is the founder and executive director of the global nonprofit Students With Psychosis. As a TEDx speaker, twice Special Books by Special Kids interviewee, Anthony Padilla interviewee, CBS This Morning national news feature, and PBS Documentary “Mysteries of Mental Illness” feature, McGough’s story has been viewed over 30 million times across multiple platforms. McGough has been featured in Glamour UK, The Boston Globe, Women’s Health Magazine, twice in Forbes, USA Today College, Healthline, Daily Mail, The Indian Express, MTV University, WGBH, Mental Health America, and more! McGough currently serves as a curator and social committee member for the Global Shapers Brooklyn Hub and a task force member through the World Economic Forum. McGough finds it important to connect with health advocates across a wide range of diagnoses and currently is a Lightbulb ambassador and severed as a 2020 conference advisor for Healthevoices. McGough collaborates with industry leads and mental health researchers and clinicians; for example, McGough was a 2020-2021 think tank participant organized by One Mind to focus on early screening for psychosis in youth. McGough is an UNLEASH talent who traveled to Denmark in August of 2017 to be an active voice to attain the United Nations Sustainable Development Goals (SDGs) and make sure people with psychosis are represented. Also, McGough has been selected as the keynote speaker for the 2022 Congress of the Schizophrenia International Research Society to take place in Florence, Italy. At the age of 17, McGough co-discovered PSR J1930-1852 leading to opportunities such as helping represent the United States in the International Space Olympics in Russia and being a Virginia Aerospace Science And Technology Scholar through the NASA Langley Research Center. McGough’s story as a radio astronomer through the Pulsar Search Collaboratory can be seen in the documentary Little Green Men.
Cecilia Joyce (she/her/hers)
Executive Board Member
Students with Psychosis
Cecilia Joyce joined @studentswithpsychosis because she was looking for a place where she could feel safe to express herself. Her search led me to @cecilia_mcgough’s TEDx Talk and this fantastic Students With Psychosis (SWP) community. Growing up, she felt lonely, isolated and embarrassed by her symptoms. She was diagnosed with schizoaffective disorder as a teen and spent the majority of her high school career in a therapeutic treatment center. Even in that environment, surrounded by people with mental health diagnoses, she felt the stigma of being psychotic and having delusions. Becoming a part of SWP has cured the loneliness and isolation that she continued to experience. Before, she lacked a community, now she has built lasting friendships and has been a part of events that she will always cherish with pride. Since joining the organization she has become happier and has found herself more eager to stick to her treatment plan. She enjoys going to meetings and finds it easy to attend several a week, even as a busy college student, working on her bachelor’s degree. She feels truly blessed to have met and become a part of the SWP family. There are many ways to get involved with SWP. This is a welcoming space where you are able to participate or not, as much as you want. She encourages everyone to see what they have to offer because she believes SWP can change your life for the better. She hopes you can join her on this journey.
Daniel Nepveux (he/him/his)
Advocate
Students with Psychosis
Daniel Nepveux says that you may call him Daniel, Dan, Dano, Danny boy, or Judd. He currently reside in Texas, USA. Daniel was featured on the Special Books By Special Kids Youtube channel, and Instagram page, for an interview he did with its wonderful and kind creator, Mr. Chris. Daniel is diagnosed with Schizoaffective Disorder/Depressive Type, CPTSD, BPD, and Multiple Traumatic Brain Injuries. He am an AVID reader of almost every genre, but his favorite is horror; and his favorite author is (of course) the great and hilarious Stephen King. He owns fifty two of King's books and is always on the lookout for anything new by him. Daniel loves singer songwriter music with lyrics that contain emotional depth and moving melodies. But his heart truly lies with reading and writing.
Positionality Statement: Daniel Nepveux is a 36 year old combat veteran currently working on being an advocate in the mental health community. Recently he has begun work on his second published book of poetry and is happy to be doing something he loves. He is the first and only member of his immediate family to have joined the military and he did so at the age of 17. Daniel is diagnosed with Schizoaffective Disorder Depressive Type, CPTSD, anxiety, and deals with chronic lung health issues. Having not experienced the difficulties of dealing with mental health while in school, he wants to better understand the trials that the younger generation goes through when navigating the upper education system.
Deanna (she/her/hers)
Live Chat Moderator & Outreach Coordinator
Students With Psychosis
Deanna is a college student studying audio engineering and film production. Deanna is from the suburbs of Austin, Texas and still resides in the area. Deanna is living with schizophrenia, bipolar disorder, and anxiety. She has a strong passion for art, film, and music, and is currently working on several projects. Deanna is a Live Chat Moderator and Outreach Coordinator at Students With Psychosis.
Positionality Statement: Deanna is from Austin, Texas. She makes it a point to help others when they are in need. Deanna is atheist, but doesn’t push her ideology on others and is respectful of others beliefs. Deanna has a libertarian political view; believing in full autonomy and limiting the states violation of one’s individual liberties.
Katie Sanford (she/her/hers)
Advocate
Students with Psychosis
When Katie was diagnosed with schizoaffective disorder at 17, she thought her life was over. But when she went to college and began to prove all of my stereotype-based ideas wrong, she wanted to share that with everyone - that people with schizophrenia spectrum disorders are capable of so much more than people think. And when she spoke publicly about it for the first time, she realized that my story had a bigger impact than she had thought when it came to changing other people's minds. Katie is always looking for new ways to expand my advocacy and meet others who live with similar disorders. Everyone's story is so different, and she love that Student's With Psychosis amplifies all these different voices, showing not just others, but also each other, that our stories are powerful and important no matter what they are and she wants to use the skills she has gained in her advocacy experience to support the efforts of Students With Psychosis and expand her network and capabilities as an advocate as well.
Positionality Statement: Katie Sanford is a 31-year-old legal assistant and mental health advocate residing in a small town in Illinois an hour outside of Chicago. Katie grew up in “wine country” in northern California, living in both rural and suburban areas after her parents divorced when she was four years old. She attended small, often under-funded public schools that provided opportunities like small-group advanced classes and agricultural and viticultural exposure. She grew up in non-religious, middle class households and identifies as an agnostic heterosexual woman with a liberal-leaning bias. She recognizes the privilege that comes with these things as well as with being a white, college-educated female in the United States. She earned her degree in psychology at Northwestern University, which provided opportunities others may not have had, like working on psychiatric research. Her professional experience includes assisting with schizophrenia research, retail management, food service, finance, and estate planning law. She has lived with depression and obsessive-compulsive disorder from a very young age that went undiagnosed until she began treatment at 17 when she was also diagnosed with depressive-type schizoaffective disorder. She also lives with an eating disorder, panic disorder, and obsessive-compulsive personality disorder. Her experiences with schizoaffective disorder inspired her decision to pursue a degree in psychology.
Maddie Jiles (they/them/theirs)
Executive Board Member
Students with Psychosis
Maddie has had schizophrenia since early childhood, and until the middle of their undergrad career it went undiagnosed, unnoticed, and untreated. It taught them a special way of living with themself and dealing with all that entailed. Maddie's family’s motto always has been, “Once you lose your sense of humor you die.” Maddie took that and ran with it through every mental health huddle and struggle in life. No matter how hard things got, they found some kind of way to laugh and find joy in even the smallest thing. They believe that’s their purpose in life, to spread that same joy. Maddie is the voice of the MadHaus Podcast and the founder of Powered by the Haus, a tabletop group on Twitch. Outside of that, they are an elementary educator and a street performer. And wherever they go, doing whatever they're doing, they make sure that they keep their family’s motto in mind. It’s important to live loudly as yourself, in every aspect that you are yourself. And they find no place where they embody that more than in @studentswithpsychosis.
Rei (he/him/his/xe/xem/xir)
Executive Board Member
Students with Psychosis
Rei is a non-binary, autistic, Jewish social work student who is also living with psychosis among other disabilities. He is very active on campus as the President of Columbus State's Pride Club as well as an officer for several other groups, including his college's branch of Phi Theta Kappa. He has been nominated for quite a few awards and scholarships during his time at CSCC. Rei currently works 2 part-time jobs, including a work study job as a Student Resource Educator and another job as an artist at Transit Arts. His art will soon be featured in local community gardens. In his free time, he likes to cross-stitch, spend time with his cats, read, and play video games. He hopes that one day he can help better the lives of people living with disabilities, including but not limited to psychosis, on both a micro and macro level. He is extremely passionate about the ableism and abuse that exists within the medical system and strives to do all he can to fix this system.
Vera Muñiz-Saurré (they/them/theirs)
Executive Board Member
Students With Psychosis
Vera Muñiz-Saurré is a nonbinary, queer, Peruvian-American public health professional currently working as an HIV Prevention Specialist at a mental health agency in Boston and now also as part of the Executive Board of Students with Psychosis! They have Schizoaffective disorder and are a survivor of gay conversion therapy. Starting in 2017, Vera helped found and admin the Psychosis Spectrum Server on Discord and they're still a strong community! Vera is currently seeking their Master of Public Health from Boston University focusing on Community Assessment, Program Design, Implementation, and Evaluation. They joined Students with Psychosis to find more community and to be more involved with psychosis advocacy! They want to use what they are learning and have learned through their time working in public health to serve our community and to help fight the systemic barriers that keep those of us most affected by health inequities from accessing quality care.
Positionality Statement: Vera Muñiz-Saurré is a 25-year old first generation Peruvian-American of mixed indigenous Andean and Spanish descent studying Community Assessment, Program Design, Implementation, and Evaluation at Boston University’s School of Public Health living with Schizoaffective Disorder. Vera is a queer nonbinary person who uses they/them pronouns and who has done work in Boston’s community as an HIV Prevention Specialist with Casa Esperanza, a Latin American focused mental health agency, since 2019. Vera centers decolonization, liberation, and community-based participatory research in their approach to Public Health and is currently doing their practicum through Students with Psychosis in which they will conduct a Community Health Assessment and Community Health Improvement Plan for the community of people in Boston who experience psychosis. Vera was raised in a conservative Catholic environment and is a survivor of conversion therapy. They plan on applying for a Clinical Psych PhD program in the fall and hope to help reduce the harms of colonization while working towards the goal of decolonizing the mental health system and broader recognition of indigenous sovereignty.
