A Peer Organization Spotlight: Listen to Students With Psychosis
Thu, 09/02/2021 – 17:08
By Cecilia A. McGough (she/they), Executive Director, Students With Psychosis
Psychosis is often left out of the mental conversation on college campuses. Often, the narrative is limited and excludes intersectional community members. The Child Mind Institute narrows “the peak onset [of psychosis to] between the ages of 15 and 25.” This age range compares to reports from The Hamilton Project which found that the majority age group enrolled in public and private colleges and universities within the United States was 18-25.  Additionally, the World Health Organization (WHO) reports that people with psychosis are at a high risk of exposure to human rights violations.  A global perspective of psychosis is thus essential. This helps create appropriate solutions, at both domestic and international levels.
The need to assist college students living with psychosis is not a niche topic. The National Institute of Mental Health (NIMH) reports that about 100,000 adolescents and young adults will experience first-episode psychosis each year. This creates an overlap of the age of onset of psychosis with the challenges of going to college. It also shows the need to create solutions with and by those experiencing psychosis and college life. One such solution is the organization I lead, Students With Psychosis (SWP).
SWP is a 501(c)(3) nonprofit that empowers student leaders. We put students at the decision-making table. One hundred percent of our executive board members are current student leaders or recently graduated alumni. This approach to our board structure helps us reflect the community’s needs better. It gives a voice and decision-making power to the community we serve. SWP is what the students decide we should be. We tackle issues the students find most prevalent.
SWP started as a Pennsylvania State University college club in 2018 named “Students With Schizophrenia” and later rebranded to be more inclusive. At SWP students can be students, meet fellow peers, and not be prefaced by their diagnosis. We are changing the global narrative of psychosis by proving that a student-led community can organize and make their voices heard.
The initial challenges that we faced early on were:
- Convincing others there is a need for a global nonprofit that assists college students living with psychosis.
- Advocating that SWP can and should be student-led with a lived experience perspective.
- Adapting, due to the COVID-19 pandemic, to a virtual setting.
- Meeting the increased need for mental health support for college students.
While we were faced with several challenges, we have had a great deal of success:
- In 2019, Students With Psychosis expanded outside the Pennsylvania State University.
- In April 2020 alone, our student leader program increased by 40% due to students being abruptly displaced because of the COVID-19 pandemic.
- Our virtual programming includes over 31+ hours of facilitated programs each week using Google Meets for video calls and Discord for text.
- Twice a day we hold hour-long live chats.
- We also stream monthly open mics on social media.
- We help meet the needs of intersectional community members through our LGBTQIA+ Group, BIPOC Group, and Comorbidity Group. We also allow ourselves to be held accountable for implementing inclusion and diversity.
- We are able to provide accessibility options such as live caption, auto-generated translations in German, Portuguese (Brazil), and Spanish (Mexico), and flexibility for persons attending (such as no requirement to turn on video or audio).
At SWP, we continue to strengthen and expand these programs to be more inclusive and accessible. Feedback from our student-led team attests to the great work we are doing.
“Students With Psychosis taught me that everyone is unique. Differences should not exclude people from getting the necessary resources to perform at their best. This organization has helped me address stigma in the workplace. It gave me the motivation to get the help and accommodations I needed at school and work. These accommodations help me balance living with psychosis.” – SWP Executive Board Secretary, Emeka Chima (United States)
“I am inspired by this team daily and their passion for mental health activism. Students and staff here helped me a lot when I realized I was in the final stages of getting diagnosed with a genetic disability. It was a difficult moment for me, and this group became more than a support group: they were my extended family. Being an Executive Board member helped me decide on becoming a therapist after graduation.” – SWP Executive Board Nominations Sub-Committee Chair, Michelle J. (South Korea)
“Students with lived experience of psychosis have so much they can teach us. They are experiencing psychosis for the first time and know firsthand how terrifying and lonely it can be. They understand what can help youth and individuals experiencing psychosis better than anyone. Students With Psychosis has already begun reshaping the conversation around psychosis. It has united students living with psychosis globally. This gives us a more powerful voice.” – SWP Executive Board President, Shira Agam (Canada)
“I joined this organization because I saw value in a community of peers. I saw beauty in a growing family, and I wanted to be a part of it. Joining SWP has been one of the most significant decisions of my life. We have become a family and a group of friends that I look forward to seeing every day. My friends here are the highlight of my day. This organization impacts my life. It has given me hope. It has allowed me to find my voice and encouraged me to be an advocate. It has promoted wellness and taught me to take care of myself better. There is value in a group of peers encouraging you in your similar journey. No one else understands the experience of psychosis — except those living with it.” – SWP Executive Board Member, Aly Struble (United States)
“After a year with this organization, I can say it has been one of the best decisions of my life. Monumentally, it has given me a family that understands me in a way that not many other people do. I can freely express my emotions and be myself around everybody, and I think the world needs more of that. SWP has helped me realize that living with mental illness is nothing to be ashamed of. Professionally, this organization has given me the confidence to take back my life.” – SWP Executive Board Member, Baileigh Renfrow (United States)
Here are some ways you can get involved with Students With Psychosis:
- Student leaders can run for a leadership position in a community group. They can also apply to our virtual internship program. (SWP will work with your school so that you can receive college credit or fulfill an internship requirement).
- Student leaders can also join our advocacy program and ambassador program.
- Non-student leaders can also participate in our virtual internship program, advocacy program, and our ambassador program.
- Follow Students With Psychosis on Facebook and Instagram @studentswithpsychosis.
- Donate to Students With Psychosis.
Together, we can change the narrative of psychosis. Learn more by visiting http://www.sws.ngo.
Cecilia McGough is a New York City-based mental health activist, nonprofit executive director, media consultant, and radio astronomer. McGough is autistic living with schizophrenia but does not let her diagnoses define her. McGough is the founder and executive director of the global nonprofit Students With Psychosis. Through multiple features, McGough’s story has been viewed over 25+ million times across various platforms. McGough is an UNLEASH talent who traveled to Denmark in August of 2017 to be an active voice to attain the United Nations SDGs. McGough has been selected as the keynote speaker for the SIRS 2022 Congress in Florence, Italy. At 17, McGough co-discovered PSR J1930-1852 leading to opportunities such as helping represent the USA in the International Space Olympics in Russia and being a VASTS Scholar through NASA. McGough’s story as a radio astronomer through the PSC can be seen in the documentary Little Green Men.