Last fall, the New Haven Register reported that a group of Yale University students and alumni filed a federal lawsuit against the university challenging its policies and practices around students with mental health disabilities. But according to our guest, a lack of access to appropriate support, as well as discrimination against students struggling with their mental health, are all too common on American campuses.
Stefanie Lyn Kaufman-Mthimkhulu is the founder and director of the non-profit Project LETS, which stands for Let’s Erase the Stigma. Project LETS is a national grassroots organization and movement focused on creating innovative, peer-led alternatives to our current mental health system. Their work includes peer support and communicative care, political advocacy, organizing, and mutual aid.
Project LETS’s mission looks beyond academia, though; led by and for people with lived experience of mental illness/madness, disability, trauma, and neurodivergence, it “seeks to build a world without systems of oppression where non-carceral responses to crises are the norm.” The organization is now active on about 30 college and high school campuses across the country.
Kaufman-Mthimkhulu is a 2017 graduate of Brown University with a degree in Medical Anthropology and Contemplative Studies, and was a 2018 Fullbright Scholar. They describe themselves as a “white, queer, non-binary, disabled, neurodivergent care worker who shows up for their communities as a Disability Justice and Mad Liberation educator and organizer, parent, doula, peer supporter, writer, and conflict intervention facilitator.”
The following transcript has been edited for length and clarity. Listen to the audio of the interview here:
Miranda Spencer: When and why did Project LETS get started?
Stefanie Lyn Kaufman-Mthimkhulu: Back in 2009, I was a freshman in high school on Long Island, New York, and I lost a friend [Brittany Marie Petrocca] to suicide October of my freshman year. It was a very traumatic death and situation, and it was handled extremely poorly by our school district. Essentially, no supports were offered. I remember students who were identified as knowing her were allowed to leave class and our parents could come pick us up, but that was about it.
I remember sitting around a table with a bunch of other students who were effectively in shock with guidance counselors, educators around us, and nobody saying a word. That was the trajectory that followed following her death… and there was just no conversation about it. Beyond that, there was an intentional effort to dissuade students from talking about her life, talking about her death, talking about the ways that we felt. We were not being supported by the people around us who claimed to be the experts, the ones that we were supposed to turn to. That was the major reason that I started doing this work informally in 2010.
I was also coming to terms with my own lived experience of what, at the time, I described as mental illness…. Around the same time, I was also deeply impacted by my friend’s death, and that really brought me into the mental health system….I began doing a lot of one-on-one peer support work. I was connected with some Girl Scouts communities, and I began sharing some of my experiences, and really found it to be so important to have community spaces…. With suicide or things connected to mental health or mental illness or disability, there’s often so much shame there. That was really when I got started doing work with Project LETS.
Spencer: After you graduated from high school, you attended Brown University. Besides difficulty in accessing mental health services, what kind of challenges and problems did you and your fellow students encounter with the systems of care on and around campus?
Kaufman-Mthimkhulu: Very early into my time at Brown, I took myself off of all of my psychiatric medication. I didn’t want to be on them anymore…I don’t recommend anyone ever doing this, but I just cold-turkey stopped everything, and I obviously went into withdrawal. I was very sick. This was about my second week of classes as a freshman, and I decided, “Let’s try and start on a transparent note.” I remember emailing my professors saying I was withdrawing from some medications, and I was going to be doing some work virtually. Then I would be in class probably within the next week or so.
A day later, I got an email from what at the time was called Student Support Services, something to the effect that “one of your professors informed us that you are not doing so well. We’d love to offer you some support and resources, please come in for a meeting.” I was a freshman, naïve. I was like, wow, they want to offer me some support. That’s great.
I remember showing up in this office, and immediately, I could tell by the tone and the environment that [this] was not the kind of meeting it was going to be, and the conversation just went along with her being like, “There are many students who come here who have existing mental health issues, and they realized within the first couple of weeks out, they just absolutely could not handle it. If you want to go home, if you want to take a leave, I can help you with the paperwork,” At the time I had a diagnosis of OCD, and she mentioned my diagnosis, and I was like, why does she have access to that information?
That meeting actually triggered what we could call an extended psychotic episode or altered state, where I just went back to my dorm and started deep-dive researching all of these things that we’re talking about today, these policies, how universities have historically been involved in surveilling students in all of these different ways. I became really frightened that I was going to be kicked out of Brown and understood very early on that it was not safe for me to be honest and open with this university about my experiences, and I never was. I never saw a counselor at the counseling center. I navigated it in different ways.
From there, I started connecting with a lot of other students and hearing and learning more. We had folks who were being forced to go to health services and get weighed regularly because they were identified to have eating disorders, and this is not just at Brown…. [There was also] the difficulty with accessing academic accommodations; the repetitive disclosure; the fact that even if you have accommodations that are approved by disability services, the decision still lies within each individual professor if they’re going to approve that [and] what it’s going to look like in that classroom; do you need to share more information? [Dealing with] that is like a full-time job….
I’ve [heard about] students from different universities receiving disciplinary action notices for having panic attacks in public spaces or engaging in self-injury, being literally penalized for those things…Other things that we saw were behavioral health contracts forcing, essentially, students to engage in certain types of therapy or certain types of care or number of sessions per week or month in order to remain on campus.
I [also] saw a lot of students who were struggling with their academics due to mental health issues or disability who were essentially given the choice between an academic suspension or “voluntary medical leave”—which is not voluntary, that’s coerced, but many students didn’t want the label of an academic suspension, so they would choose that medical leave. Even looking across the board at different universities and the standards that they have for what students have to do when they’re on a medical leave… showing that they’re working, showing that they’re getting treatment, sometimes they have to take other educational classes in the meantime before coming back and doing a re-application process to colleges that they’ve already been accepted to!….
The last thing I’ll say is that the majority, if not all, of college counseling centers are operating from very short-term therapy models that are almost always rooted in talk therapy, which is just not really accessible to many students who have chronic or more intensive experiences that are outside of general mental health and wellness. We see the lack of options for other students experiencing mental health crises, who often are met with police intervention within their dorm rooms [or] anywhere on campus, and taken into hospitals [involuntarily]. So, lots of different buckets of issues that are all connected to the fact that we are viewed as liabilities and burdens in these spaces, and it takes a significant amount of work [and] resources privilege to be able to maintain our presence.
Spencer: Was that the point you started a Project LETS chapter on your campus and created the Peer Mental Health Advocate program?
Kaufman-Mthimkhulu: Yeah. So, I was doing work with Project LETS before I got to Brown, and I never necessarily intended for it to grow into the organization that it has grown into. I think this was just the work that I felt was necessary. We just kept moving and doing and it shifted and changed over time. I think some of those things that I saw in my high school experience were just amplified, 10, 15-fold [on a college campus].
When I got there… I did spend about a year meeting with administrators and proposing essentially this kind of peer program, but[one] that was built into the university because I thought it would be more sustainable that way… We went back and forth for many, many, many months, and eventually, we were told that the university believed it was too risky to engage in a program like this…. At that point, I remember sending out a message to our university’s daily newsletter, basically being like, “We are going to be starting this peer support training…!”
I built the curriculum from a lot of different lenses and angles, but really looking at the certified peer-recovery specialist curriculums and seeing the gaps that existed there and wanting to make something that was really specific to a student experience. [Something] that was really culturally and trauma-responsive, that considered social, political, and economic factors as core parts of what we experience. That’s moving away from a biomedical model, centering different experiences.
I designed the first version of the curriculum, and we trained between 50 and 60 students in that first cohort. Everyone became PMHAs, or Peer Mental Health Advocates. I think it just shows that it was something that was desired, and that was an important moment as well for me, to recognize that sometimes we just need to stop talking and do something.
Spencer: Tell me a little more about what a Peer Mental Health Advocate does to help their fellow students.
Kaufman-Mthimkhulu: Our peer support program is a little bit different in that everyone has lived experience. Many college campuses have peer-support programs that anyone can join and we end up seeing a lot of folks who want to be therapists… or who feel really bad for mentally ill people and are coming from ideologies and perspectives that are not [centered on] equality and minimizing those power dynamics. For us, it was really important that everyone is identifying as being part of our communities in some capacity.
Our students who go through this training are coming out of it and supporting folks, I think, in a more traditional capacity of what you might imagine, maybe like regular sessions. Folks might meet weekly or biweekly, in-person, [or] virtually, might be texting throughout the week, depending on the container of the relationship and the boundaries that are set within it….
A lot of our PMHAs do rapid crisis response, both for peers that they are assigned to and working with regularly and in general. That can look many different ways. We’ll often go with students to meetings or appointments …. We’ll make calls for people, do the logistical labor that comes along with our identities: Does my insurance cover this? Which provider can I see? Helping people actually navigate systems, which is so incredibly supportive.
Many of our students get matched with someone who shares aspects of their identity, their lived experience, and having a connection in that way where you see yourself reflected. … I think is so critically important. Our students know that we are not connected to the university in terms of we don’t share information with the university, we’re not mandated reporters in that capacity, and so there’s a level of safety and trust that we’re able to build with students that I don’t think could ever be present within the mental health system as it stands.
Spencer: You wrote a report that was able to quantify the positive effect of Project LETS’ work. What are some of the highlights?
Kaufman-Mthimkhulu: We had sent out surveys… and [were] doing evaluations at a six-month point and following up with folks to really take a look at: What is the effect of this program? We definitely had a lot of qualitative responses and stories and experiences to share that are so hard to quantify, but …we saw really significant increases from this cohort of students’ data in terms of actually putting different coping skills into action, feeling more comfortable navigating systems and services on campus, feeling more prepared to navigate a crisis that arises for themselves or a community member. Nearly everyone that we had worked with who filled out this evaluation form had built a very robust crisis and safety plan with their PMHA.
For us, it’s really important to have access to a crisis and safety plan for everyone so that if and when things happen, we can make decisions that are most in alignment with somebody’s values, with what they chose for themselves.…. Folks that have been supported through our program talk about the fact that they would have never graduated without the support of their PMHA…. We’ve had people who wrote letters of support while students were on medical leave, supported them while they were on medical leave and the university essentially forgot about them.
I know at Brown and many other places if you’re on medical leave, you can’t be part of student groups, you can’t access the gym or the dining halls. You essentially can’t really be around campus, which is such an isolating experience for folks who’ve just built new friendships or relationships. Thinking about all of those small things that allow us to keep moving forward, [is] someone believing in us.
Spencer: Let’s talk a little about the campus chapters. You said there are about 30 now, mostly at colleges and a few at high schools. What are some of them up to? What are some of their successes or challenges?
Kaufman-Mthimkhulu: Different chapters are doing different things. …Especially since COVID, a lot of our chapters have been looking more inward: How do we sustain and support the folks who are showing up here who are part of this community, rather than thinking, okay, what are the panels we can put on? What is the education that we can do?
Thinking about grief work, I know that some of our chapters have done regular and continue to hold regular spaces for students to move through and process their grief and [are] continuing with peer support. Thinking about organizing for policy change has been a really huge thing on all of our campuses. That happens in different ways to different degrees. At Brown, for example, we were involved in a lot of direct policy change there. … There were so many very specific policies that we wanted to either get rid of or address. That was a big focus, and I think now it’s been really great to see how chapters are continuing that work….
Sometimes chapters may be approaching things from a place where [Project LETS is] really rooted, which is a radical orientation. That’s not just saying, we need to increase access to the mental health system. We are questioning, like, why does this mental health system exist in this way, what are the potentials for harm once we get people through the door, and what can we be doing differently? …Our chapters have done that, right through building these alternative resource systems where students can go to and access care in a different way. [It] has been really amazing to see, despite those challenges that do arise.
Spencer: How can students start a new chapter on their campus?
Kaufman-Mthimkhulu: We have an application that is always rolling on our website [and] regular orientations throughout the year, where folks will receive some training, some introduction to the work that we do, and the kind of support system put in place for folks. We have a lot of flexibility. Again, there are folks who are coming to us with really specific issues on their campuses that they want to address, and some folks who are looking for more structure. That’s the beauty of running an organization from a Disability Justice and Mad Liberation lens: We have the ability to be flexible in that way and really value the contributions that people bring to the table and the different ways that they see and want to do the work. …
We basically support students and chapters in achieving the goals that they set and supporting them in moving through the challenges that exist in getting that done on their campuses and navigating intense dynamics with administrators. …We do a lot of leadership development work, helping folks create anti-oppressive spaces where we’re not replicating the same types of harm that exists within [the] mental health system or within society.
Spencer: Is Project LETS something that family members can get involved with?
Kaufman-Mthimkhulu: At the moment, in terms of getting involved in the chapter-related work that we’ve been talking about, that tends to lend itself more on the youth side. But we absolutely have opportunities and are interested in both working with anyone who wants to work with us in terms of supporting our initiatives, and then also receiving services. Something we’ve done with families, and we’re really excited about, is almost like mediation work where you have a parent, maybe, calling 911 for their child who’s in a mental health crisis. We get requests like this fairly frequently, where folks are asking us to kind of come in and help repair harm that’s happened within the family. So, we might meet with the person who was [involuntarily] hospitalized and then meet with the family members, then do some separate work to reflect on in process, and then bring folks back together.
Spencer: Any final thoughts that you’d like to leave our listeners with?
Kaufman-Mthimkhulu: It’s painful for me as someone who just experienced college a few years ago to be seeing some of the news and the way that folks are talking about the lawsuits, as if these things are brand-new information. … These are things that have very, very long histories, which is why I personally think it’s important to recognize our community members as a politically oppressed class that has a very specific history of oppression within dominant society.
I don’t see enough of those connections being made when we have these conversations. It’s almost like well, Yale is discriminating against these students out of thin air. Where does it come from? I want to see more attention to the history and the lineages of where these issues are rooted so that we can move forward collectively and have our histories recognized without repeating these cycles that harm our community members. I think we have a lot of options and opportunities to do that. I’m really excited to see some of the organizing and the momentum, especially within abolitionist organizing spaces, that’s happening on this front.