Project LETS Final Conference Report

The Project LETS inaugural conference

Building Peer Support Services in University Mental Health Care Systems October 6-9th, 2017 Brown University Bergen Community College Brown University Columbia University Teachers College Cornell University Michigan State University University of Pennsylvania University of Rhode Island Williams College Yale University

Building Peer Support Services in University Mental Health Care Systems: Conference Report

"I think the bottom line is you have to organize. And I think that’s the same path a lot of groups have had to use to get heard, to get seen, to get care, to get something to happen for them.”

- Will Meek, CAPS Director

“To me, LETS is part of a potential grouping of solutions to rethink mental health on campuses. Students really want to talk to their peers, they want to talk to educated peers who understand what is going on, and how to help people feel better. And that know the system, and can try to work with them and try to make connections for them.

And the bottom line is, also, it works.” - Will Meek

www.LetsEraseTheStigma.com

Day One: Saturday BREAKFAST WITH WILL MEEK, PHD. In their Saturday morning session with Will Meek, Director of Counseling and Psychological Services (CAPS) at Brown University, students asked about the “behind-the-scenes” of administration and college counseling centers. The group discussed: Access to care and long wait times (Many schools are still using the same methods of delivery that were being used when these counseling centers opened in the 1970s and 1980s; Students explored solutions like an alternate intake process, step models of care, and peer advocacy) Relationships with Administrators (Ways to leverage support for new initiatives with administrators who are cautious and reluctant to take risks; Plans to build a support network where LETS members can connect their administrators to Counseling Directors from other schools; Tactics to use when administration won’t respond to student concerns and counseling directors won’t met with students) Personal Experiences (Multiple students described crisis scenarios in which they needed immediate care, but their counseling centers had wait times of several weeks- or even several months)

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

“You can do all the research you want on different conditions, but it’s completely different when you’ve lived with an illness.”

-Danielle D., CU TC, on the importance of “lived experience”

Day One: Saturday INTRODUCTION TO PROJECT LETS The Executive Team kicked off the conference with a history of Project LETS-- including its work in high schools, colleges, and within online communities-- and an overview of their core values! The group reviewed:

Institutional erasure of mental illness narratives and suicide Language guidelines and expectations for the weekend Frameworks for conceptualizing mental health, mental illness, and disability Foundations of the PMHA program and the history of peer support services

Day One: Saturday

CULTURAL & POLITICAL CONCEPTIONS OF MENTAL ILLNESS

This workshop delved into issues of identity, including race, ethnicity, sexuality, and class, and how they intersect with experiences of mental illness. After an initial presentation, conference attendees broke down into groups to discuss their experiences with culture, privilege, marginalization, and mental illness.

Key Outcomes of the Workshop: Interrogating the predominance of Western models of mental health care Exploring the different stressors and traumas that affect marginalized communities (Including experiences specific to college students, like imposter syndrome, institutional oppression, and microaggressions) Addressing disparities between the mental health (and mental health care) of racial groups Defining cultural competence within the mental health care field

www.LetsEraseTheStigma.com

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day One: Saturday WHEN MANDATED CARE DOESN'T WORK This panel featured four members of Project LETS at Brown who had personal experience with mandated mental health care while at college. The students’ lived experiences ranged from eating disorders to anxiety to psychosis; some had experienced weight management at university health services, others had mandated counseling center appointments, and others experienced forced medical leave. The panelists discussed what type of care was helpful, what type of care was not helpful, what they wished the university would’ve done differently, and how their experiences with mandated care shaped their current interactions with the mental health care system.

Main Points of Discussion: Everyone has a different definition of a crisis.

For some folks, it’s a panic attack; for others, it’s a psychotic break; for others, it’s relapsing into binging and purging for weeks at a time.

The duration and severity may also vary. The panelists encouraged the audience to not make assumptions!

How to support someone who is going through a crisis - When to intervene, how to assess risk, and how to make space for them to open up - The culture of surveillance at many universities makes students afraid to speak out; allowing someone to maintain autonomy and control is important Interpersonal relationships and community are critical, especially for folks who aren’t comfortable seeking professional resources - The process of setting boundaries looks different in every relationship, but is always essential Many panelists work to support others through crises by being open and vulnerable about their own experiences

www.LetsEraseTheStigma.com

“If you are a person for whom sharing your own experiences [with mental illness] is not safe, but you want other people to feel safe approaching you-- when you are actually listening to someone talk, try not to talk about yourself simultaneously. It really makes a difference to be attentive and to be responding fully to what the other person is telling you.”

When asked, “How do we create a safe space where people feel comfortable coming forward with their experience?” panelists and audience members responded:

“I think language is really important in dealing with mental illness. Taking away ableist, sexist, heteropatriarchal terms that you’ve internalized really affects the way that you understand other people, and maybe empathize with them.”

“I’ve shared with people my experiences with mental illness, and I think one of the best ways that people can react is by not being hypervigilant. If you have a mental illness, and that person is always telling you, ‘Oh, are you taking your meds today?’ It’s constantly aggravating because it’s basically like, ‘Are you mentally ill today?’ And I think that’s the best thing, is to avoid being hypervigilant and the worried friend, for me at least.”

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day Two: Sunday ANTI-ABLEISM, ANTI-VIOLENCE, & COMMUNITY ACCOUNTABILITY During this workshop, members of the Project LETS National team discussed the ways that ableism can manifest in activist spaces, including the ways ableism manifests within LETS itself. They also discussed community accountability-- acknowledging that mental illness can affect interpersonal dynamics and workload, but not justifying behavior that burdens or harms others. In order to prepare students to be able to confront ableism in their own organizations, they posed many questions to the audience, including: What does it mean to take responsibility for my healing?

What does it mean to take responsibility for the effect of my trauma on other people?

“I appreciated that the workshop wasn’t claiming that we’re all ‘woke.’ We’re not all ever ‘woke.’ We’re all always trying to become more socially conscious and political, and I appreciated the honesty.”

“Hope gets you there. Work gets you through.”

James Baldwin

Lou Kaly from the Bluestockings Collective, a feminist bookstore and organization in New York City, spoke about holding a leadership position while living with mental illness.

Lou emphasized the importance of transparency, stating, “Working collectively requires honesty, communication, and trust.” In order to preempt situations in which communication might be difficult for their colleagues, the Bluestockings team has meetings where each individual answers the following questions:

What makes us stressed?

What can others do for us when we’re stressed?

What does it look like when we’re stressed?

What behaviors should others avoid?

How do we personally help ourselves destress?

-Paola, Columbia University Teachers College

www.LetsEraseTheStigma.com

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day Two: Sunday WORKSHOP WITH MARCO MCWILLIAMS Black Studies scholar and activist Marco McWilliams opened his workshop by sharing his own experience of disability, and how it shaped his educational path. He asked everyone in the room to answer two questions: In your life, what is something that you have done that you are most proud of?

In the future, how do you plan to work on dismantling white supremacy?

“We said that power is to be able to effect change; the ability to make choices.”

-Students from Michigan State and Brown

This workshop was a huge turning point in the conference, with students from different schools learning more about each other’s lives, and connecting with each other over the course of the 90-minute session.

Marco also asked the students to separate into small groups, and to create a straightforward, easy-tounderstand definition of the word power. Here are some of their responses:

“Basically what that boils down to, is that a person in a position of power is given the authority and the autonomy to represent whatever group that they are in a position of power over. Whether or not that’s actually representative of it, that comes into a different issue. But they do have that ability to represent them through their own single voice. And they also have the ability to decide whether they’re using their own singular voice, or whether they actually take into account other opinions and a collective voice.” Student from Yale

www.LetsEraseTheStigma.com

“We wrote that power is the ‘chance to make choices.’ So with that, it can either mean something negative or something positive or something in between on the spectrum… If y’all are explaining something as critical as power, y’all have to be real about what is has historically looked like.”

-Student from Columbia Teachers College

“Power is the collective capacity to control circumstances.” P=C*4 - Marco

“We said power is having a voice. Your voice is power.

And being able to influence and make decisions for your community, or a community, and being able to control your own self and your own decisions. So when we came together collectively, what we made was: ‘Being in charge of yourself and others.’” -Student from Cornell “Power is the presence of social, physical, internal energy that has the ability to create a movement or change. There’s a lot of modifiers in that sentence, but I think the two words we were focusing on there were ‘energy’ and ‘movement,’ because there are so many ways that manifests. But there’s energy, and it somehow propels movement.” -Students from Yale and Bergen Community College Page 5

Building Peer Support Services in University Mental Health Care Systems: Conference Report

“It's very easy to be ignored when there are like 50,000 other undergraduates…

We're trying to fix the problem, but it's kind of like- we have no power here.

How can we fix the problem, if administrators don't want to fix the problem, and they’re in charge?” -Sam F., MSU

Day Two: Sunday POWER & PRIVILEGE: WORKING WITH ADMIN. During this workshop, the LETS Team addressed challenges that might arise when student disability organizers work with administration, presented tactics for students to gain traction on campus, and problem-solved with individual delegations. The workshop started with an overview of disability activism on college campuses, and how that movement led to the passage of critical legislation like the Rehabilitation Act and the Americans with Disabilities Act. Then, the LETS team covered various administrative dynamics that they’d encountered in their work with high schools and colleges, and several conference attendees raised questions about their own struggles with administration.

Administrators refusing to respond to students’ requests for a meeting Administrators claiming that students’ views or propositions were too radical, and requesting that students “water down” their requests Administrators meeting with students and hearing their concerns, but neglecting to take action Overall: Students are struggling to sustain meetings with administrators about ableism in academia, and to convince universities to make necessary systemic changes on behalf of current students with mental illness Student organizers complete "Power Mapping" charts

Day Two: Sunday KNOW YOUR RIGHTS: KAREN BOWER Attorney Karen Bower, who advocates on behalf of students with mental illness, presented on student rights and common discriminatory university policies and practices. She covered: the legal definition of disability, and the protections that college students have under section 504 of the Rehabilitation Act, the ADA, the Federal Housing Act, and state law; common issues she sees with involuntary leaves-- which, she stated, should probably never be enacted; illegal conditions that are frequently attached to “voluntary” leaves; disciplinary action, as well as FERPA protections.

During the Q+A and conversations that followed, conference attendees discussed the following key points:

"A student on leave is still your student."

www.LetsEraseTheStigma.com

Many students are placed on involuntary leave, or are mandated to comply with specific treatments for their mental health, without due process (many students are unaware of their due process protections in the context of university administration!)

Many students weren’t aware that information about their mental health could be included in their educational record, which they may request under FERPA Many schools are not following these guidelines for leave, including: - Remaining in contact with students who have taken leave - Not requiring that they leave for a minimum amount of time - Not requiring work or volunteer experience during their time on leave - Not requiring an independent evaluation from a school provider, if their home provider says they’re okay to return Page 6

Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day Two: Sunday KEYNOTE WITH JOSE ROSARIO Keynote speaker Jose Rosario is the Coordinator of Disability Services at Rhode Island College, and Rhode Island’s Disability Awareness Caucus Chairman for the Democratic Party. Jose discussed his lived experience with disability and mental health, coming to terms with the need to go to therapy, sharing his story on a public stage, and his current role as an advocate for individuals with disabilities at Rhode Island College and in the Rhode Island state government.

Jose shared that, when he was an undergraduate at RIC, he experienced suicidal thoughts. With the encouragement of a friend, he went to the counseling center-- without that peer support and professional care, he said, “I don’t know if I would’ve made it.” He discussed his initial reluctance to go to therapy:

“For me, therapy was scary. I was going into the mental health field. I thought, ‘Oh, if I go to therapy, I’m never going to make it [as a mental health professional]. I’m never going to be able to do what I want to do.’ That was far, far, far from the truth. But in my mind, it was a real fear-- that I was too ‘broken’ for my career.”

“That’s a fun one that I hear often. In fact, just this week, I had a young freshman tell me, ‘I decided not to declare a social work major, because I’m too damaged.’ We sat and we talked about, ‘Well how does your experience make you more equipped, and make you more knowledgeable, and make you more sensitive to the issues happening around the people you’re serving?’ That’s something that it takes years to learn.”

“We think using the words ‘diversity’ and ‘inclusion’ make us perfect, make the institution wonderful. ‘We’re progressive; we’re ready to go.’ Let me tell you-- those are just words, unless you have actions to back it up. If you want to call yourself a diverse institution, then you need to provide policies and procedures that will protect all of your students. Even the ones that are undocumented. I am talking about creating a space where every student feels comfortable, where every person feels comfortable to share who they are, because they know that you’re going to support them. And they know that whatever bias you have, you leave that crap at the door.

Because our job-- if we really want to be inclusive and diverse-- is to build something.”

www.LetsEraseTheStigma.com

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day Three: Monday

ABLEISM IN ACADEMIA

Kat Boorstein’s presentation opened with the question, “Who do college counseling centers exist to serve?” During her time as an undergraduate at Brown, several articles surfaced about involuntary medical leaves and discriminatory mental health policies at Yale, Brown, and RISD. This media coverage, as well as her own lived experience with anxiety and depression, prompted Kat to investigate the history of college mental health services. Her thesis focused specifically on the formation of Yale University’s Division of Mental Hygiene, founded in 1926.

We just can't have you here.

Yale’s Sterling Memorial Library kept records of the Division of Mental Hygiene’s operations from 19261955, because it was the third department of its kind in the country, and at the time it was an “anomaly” A Yale student, Clifford Beers, experienced abuse in an asylum. In response, he founded the National Committee on Mental Hygiene, through which he called for such departments of mental hygiene to be embedded within universities While the wellbeing of the students may have been the initial intention for its founding, in the 1950s the head of the Division, Dr. Clements Fry, told university administrators, “[The Division was] started in 1926… to prevent suicides, breakdowns, and bad publicity.”

In the 1930s, Dr. Fry was adamant about maintaining student confidentiality. Deans of the medical school requested information about students who’d applied for admission; Fry faced ridicule for refusing to provide them with patient records.

In the 1940s, Fry’s position on confidentiality changed.

Yale psychiatrists screened students who were looking to fight in WWII. The Division started to receive more money, and turned its focus to research and the categorization of students.

Fry wrote to a rear admiral in 1944, concerned about the effect of the GI bill, and stated that some applicants weren’t mentally fit for admission to Yale.

The questions that students asked in the 1930s are still being asked today: After a problem is 'solved', do you still watch a patient all through college?

Are our records confidential? www.LetsEraseTheStigma.com

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Day Three: Monday TRAUMA-INFORMED UNIVERSITIES Alana Sacks, Brown University SHARE Advocate and LICSW, gave a presentation on manifestations of trauma, and ways that universities can utilize trauma-informed practices. She covered many different types of trauma responses, outlined ways that people can support survivors of trauma, and explained the basic elements of a trauma-informed approach to policy and community-building. Main points from her presentation included: The importance of recognizing that many students will have experienced abuse or adverse childhood experiences before coming to college (Universities need to take more than a preventative approach when thinking about sexual violence on college campuses) The existence of multiple different levels of protection for individuals who may be traumatized (Helps to have supportive environments on as many levels as possible, including individual, social, institutional, and societal levels) Our societal tendency to create perpetrators of violence into “monsters” affects our practices of community accountability (Title IX policies are punitive-- can be helpful in terms of holding people accountable, but is also retroactive, and can reinforce power dynamics )

Day Three: Monday PROBLEM-SOLVING SESSIONS The Conference Confirmed That: Student mental health organizers are mobilizing, but they’re encountering many barriers to institutional change-- struggling to have meetings with administrators, struggling to have administrators take concrete actions, struggling to hold their institutions accountable.

Students are interested in connecting with other organizers who are doing similar work at their institutions; while some concerns may be school-specific, many student mental health organizers are encountering the same issues, regardless of the university’s culture Individuals with mental illness are striving for community on their own campuses

“Start the conversation, and when they try to silence you-because I promise you, they will-speak louder.” - Jose Rosario

www.LetsEraseTheStigma.com

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Building Peer Support Services in University Mental Health Care Systems: Conference Report

Post-Conference

ACTION PLANS

The Daily Pennsylvanian covered Project LETS at Penn’s first student panel, “Living with Mental Illness at Penn,” which took place on December 1, 2017. Panelists discussed the ways they navigate Penn’s “academically caustic environment” while living with mental illness or neurodivergence.

On October 25, Project LETS at Michigan State University held a student panel for “mental health orientation!” They ended the semester with a Failure Confessional; over 40 students anonymously submitted personal failures for public display.

Project LETS at Yale held two events after the conference-- one, a social event where students with mental illness could meet administrators who have a hand in mental health policy, and two, a holiday cardwriting event where students crafted messages for patients in psychiatric hospitals.

Project LETS at Brown created a LETS Space for neurodivergent students of color; and has begun advocating for a MIND (Mental Illness, Neurodivergence, and Disability) Center on campus.

9 schools are starting PMHA programs in the spring, and 3 new schools applied for Project LETS chapters (University of Waterloo, UC Davis, and North Dakota State University)

“I think one of the best parts about coming here was-- our LETS chapter just started, and we’re really new, we’re still trying to get the word out and get people to join. And so, fighting with an administration that doesn’t want to hear anything that we have to say, can be really daunting. It’s nice to hear all these different ways that we can approach it, and kind of break it down into steps…

So that was really helpful.” -Michigan State Student

www.LetsEraseTheStigma.com

“Student resistance is effective. And you’re not powerless at all. You have so much power, bringing your community together. Don’t ever let them make you feel like you don’t.

Because you do.” -Paola, CU TC

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Thank you to our generous conference sponsors!

The Mary Christie Foundation PeaceLove Studios

... and our food donors in Providence!

Dave's Coffee Kabob and Curry PieZoni's Louis Diner Blue State Coffee Andrea's Geoff's Sandwiches La'Creperie Chipotle