Introducing Users & Survivors in Academia and the Lived Experience Research Network’s Discrimination in Higher Ed Initiative
Users & Survivors in Academia (USA) is a support, advocacy, and resource-sharing group for graduate students (both master’s and doctoral) with psychiatric disabilities or current/past experience in the behavioral health system. USA started primarily for us to reach our peers across the country and engage in mutual support and advocacy around issues we face in higher education settings. Over the past year, USA has grown to 30 members in states across the country, and has quickly evolved into a forum to organize individual and systems advocacy, and support one another in self-advocacy in our own academic institutions. Our newest developments are the Lived Experience Research Network (LERN), and an advocacy project: Discrimination in Higher Ed, which aims to collect stories from others and garner support for concrete systems change.
Through discussions among the members of USA, as well as conversations with students in other settings, we’ve heard stories of discrimination and stigma that would horrify any advocate: students kicked out of school or banned from campuses and dormitories (in some cases permanently) because of a first break (psychosis or mania) or suicide attempt; denied admission to clinical programs, practica or internships because of their own lived experience; repeatedly told that students like them (i.e. with a “mental illness”) could not finish a PhD or succeed in academia; punished for challenging discriminatory treatment; routinely forced to listen to comments from other students and faculty concerning the deep “deficits” and “pathology” of service users and survivors living in the community. Few students have escaped any of these experiences and in the worst cases, their narratives and often devastating impact on their lives and careers are nothing short of heartbreaking.
One is alone: Our Stories
Although we personally have experienced many instances of discrimination across this range, and have heard many more from others, we will share two anecdotes to illustrate the types of discrimination graduate students may face in higher education settings:
I first experienced (and was labeled with) psychosis in the first year of a small and competitive philosophy PhD program. Other graduate students apparently alerted my advisor to what they perceived to be “unusual” behavior and, out of the blue, I was called by a faculty member and asked not to come in to school and told that my graduate assistant responsibilities would be carried out by another student. When I tried contacting faculty who I thought of as allies, they informed me that they had been instructed not to talk to me; my advisor slammed her door in my face when I showed up, sobbing, to ask for more information. I later discovered that they thought--based solely on a psychosis label and with no probable cause—that I might “bomb a building.”
Although I was eventually reinstated, it was only a matter of time before the department elected to dismiss me from the program entirely in spite of maintaining a 4.0 GPA, receiving top marks on my (blinded) departmental review papers, and having no disciplinary violations. The department would not even allow me to enroll in further courses, instead granting me an MA (in spite of not having met the official requirements), presumably in order to better guarantee my silence. I was told that there was little to no chance that I would or could finish a PhD. Rather than getting angry, I became severely depressed—nearly gave up on any sort of academic career and concluded that I must not be smart enough to succeed as a scholar or researcher. It took me years to regain a healthy level of self-confidence; I’m now finishing a PhD in psychology.
While in my PhD program in public mental health, a post-doctoral fellow gave a presentation about bipolar disorder (which I have been labeled with) where he showed a graph of mania and depression, and said "up here is where people who are manic shoot other people; down here is where depressed people shoot themselves." He explained that people get so irritable that they become violent when they are “manic” because they “can’t get their way.” I was fortunate that the professor corrected this particular statement, but not the overall stigmatizing nature of the presentation. I suppose I have gotten so accustomed to hearing these things that I did not react outwardly. I also feared that any reaction would be perceived as personal because I’m “out” in my program—our righteous anger and hurt can easily be construed as a “mental health problem” in itself. In many cases discriminatory statements like this can cause stress and anxiety, make it difficult to concentrate or absorb information, and impact one’s performance.
We tell these stories to illustrate our own personal experiences with different ends of the spectrum of discrimination and harassment in academic settings. While Nev’s story demonstrates a clear violation of laws to protect people with disabilities, such as the Americans with Disabilities Act (ADA), Laysha’s story is an all-too-common experience in academia of more insidious discriminatory remarks that one could not take legal action against.
The rates of success for disability discrimination cases are shocking: Only 2-6% of people who sue for employment or education discrimination based on disability ultimately win in court (Lee, 2003). When you look at cases based on mental disability, the rate is even lower, with over two thirds of cases dismissed because the defendants, although clearly legally disabled, are unable to prove they actually “qualify” for the jobs or positions in question. The legal scholar James Concannon (2012) argues that the ADA has “disproportionately disqualified individuals with mental impairments from coverage, and from the continuing stigma attached to mental disabilities.” We cannot win this battle alone—we must fight together. USA and LERN have provided opportunities for us to connect in solidarity and organize for systems change, but these issues need to be taken further and faster in order to address ongoing discrimination and barriers in higher education and prevent others from enduring these experiences.
Starting a movement: Your stories
As graduate students, we are trapped in a hierarchical bureaucracy where we have the least power of any members of this community. Oftentimes it is easier to ignore comments rather than speak out; to leave a program and transfer to another one rather than litigate. Like many oppressed groups, if we speak we risk retaliation; if we remain silent, nothing will change. Because of this, we have started an advocacy project to create a base for systemic change in university policies and approaches to students who identify as having a psychiatric disability or have lived experience of the mental health system.
To our knowledge, there are currently no advocacy projects in the United States specifically geared towards addressing problems associated with risk monitoring for early intervention, involuntary leaves of absence and/or dismissals, denial of graduate program or clinical practica applicants, or refusal to provide graduate and doctoral accommodations based on a psychiatric disability. In order to fill this gap, our organization LERN has developed a Discrimination in Higher Ed (DHE) systems advocacy project. The DHE working group, led by Beckie Child, a PhD student Portland State, has created a survey designed to gather information about students' experiences of discrimination, accommodation denials, and other disability-related barriers in postsecondary settings. We are also currently working on developing a media campaign, a critical guide to navigating mental health issues in higher education, and collaborations with national legal advocacy organizations.
Silence: A nail in the coffin of science
While we will both likely finish our doctoral degrees within the next year, it has not been without heartache and heartbreak, and we recognize that many more will still be “in the trenches.” It has taken internal and external resources for us to get to this point--resources that not everyone has or knows that they have inside of themselves or around them. We have often had to just pull-through. Supposed protections of people with disabilities have done little to level the playing field--much of the time we are on a steeper playing field than our graduate student peers who do not face this discrimination. Routine and systemic discrimination against any group--people with disabilities, psychiatric histories, women, racial/ethnic minorities, and LGBTQ individuals--continue to perpetuate academia as an “old boy’s club”. Federal funders of higher education, such as the National Institutes of Health (NIH), have made recruitment of students from diverse backgrounds a priority (see, for example, the NIH “Increasing the Diversity of the NIH-funded Workforce” project), yet this goal can never be attained if the academic institutions themselves make it difficult or impossible for students with psychiatric disabilities to gain admission to or finish graduate degrees. The inevitable next step is that research and clinical practice will continue to be fed by a stream of people without lived experience or disability who have always dominated these fields--and thus continue to dominate discourse on policy, practice, and evidence.
The issue of whether to disclose or not also remains rife with problems. Some individuals have no choice but to “come out.” The rumor mill gets going and there is no way of concealing a history of treatment or diagnosis. Others come “out” as a matter of necessity (i.e. “registering” a disability--often requiring an ICD or DSM code and details as to the kind and type of “symptom--in order to qualify for ADA accommodations), while still others, aligning with principles of social justice, actively choose to stand in solidarity with the larger community of those who identify as having psychiatric disabilities or histories. Some researchers wait until they have secured tenure or other secure job opportunities to come out. We realize that there are many risks associated with disclosure during a graduate program--it perhaps may be the more logical choice to do what you can to “pass” as a “normal” until you can be sure that you have jumped through all hoops that [to some degree] protect you from discrimination.
The ADA protects “qualified workers” with a disability. A wrinkle in this protection for graduate students is that we are in a no-person’s land in between students and workers in which we are told that we are not protected by the ADA as paid (or unpaid) workers and the accommodations we need do not fit within those granted to students in college classes. We have more than our fair share of responsibilities as “qualified” workers, and yet unequal rights compared to other workers. Nothing can change until they know we are here, and that diversity in experience or self-identification does not change the fact that we are “qualified” to be here. This fight is even harder if allies who are faculty members, other graduate students without histories of psychiatric disabilities, and other people with lived experience who are not in graduate school do not fight alongside us. Unlike countries such as the UK, Canada, and Australia, the United States has aggressively pursued a continuing pipeline of researchers and clinical practitioners without lived experience (users and survivors) of the behavioral system by ignoring our presence and perspectives as emerging researchers and clinicians and either turning a blind eye to discrimination or actively engaging in it. (As an example, in 2007 two psychologists published a survey of US graduate admissions directors in which disclosures of mental health problems during the admissions process was categorized as a “kiss of death”; the authors did not challenge this practice in their conclusions, and no other faculty, academics or federal administrators wrote letters of responses to protest this overtly discriminatory norm.)
Although other countries are not without their share of problems in this area, without our voices as both users/survivors and trained researchers and clinicians, the United States will continue to emphasize building a biogenetic evidence-base without a balanced approach to exploring alternative hypotheses and innovations in support, intervention, and prevention.
A moral imperative: What you can do
We urge activists, advocates and allies from around the country to join us in documenting and contesting discrimination and harassment in postsecondary institutions. Click here to participate in our survey; email us if you have further ideas for systems advocacy; speak out among your own contacts within higher ed settings.
Nev Jones is the Co-Director of LERN, a doctoral candidate in community psychology at DePaul University in Chicago, and the director and founder of Chicago Hearing Voices. Prior to studying psychology, she received a B.A. and M.A. in continental philosophy (with a focus on phenomenology and philosophy of psychiatry) and spent a year as a Japanese Ministry of Education and Science Doctoral Research Fellow in cultural philosophy at the Nanzan Institute for Religion and Culture in Nagoya. Within philosophy, her areas of concentration were critical psychiatry, feminist & critical race theory, and cultural studies. Nev currently divides her time between research (focusing on participatory methodologies, early intervention in psychosis, and interdisciplinary work on the phenomenology of voices, visions & extreme states) and direct advocacy (facilitating voices groups, and working on consultation and training projects aligned with the international hearing voices movement). In the past she has worked as a project director for the NIMH Center on Adherence and Self-Determination, a research coordinator for a multi-county evaluation of the impact of the transition to Medicaid managed care in Illinois, and as an advisory board member to the National Council on Disability's Medicaid Managed Care white paper project. She currently serves as the user/survivor outreach chair for the International Society for Psychological and Social Approaches to Psychosis (ISPS), and is a member of the international advisory board of Durham University's multidisciplinary Hearing the Voice project, as well as the interdisciplinary and sub-types working groups of the International Consortium on Hallucination Research. Nev is currently collaborating on interdisciplinary development projects with the International Network on Philosophy and Psychiatry and the psychiatric anthropologist Tanya Luhrmann at Stanford University. A first person account is available here; Nev has lived experience of the social welfare and psychiatric systems as well as specialized early intervention for first episode psychosis.