As we continue building Neurodivergent-U (NDU) into a sustainable project, most of the work we have been doing up to this point has been quietly behind the scenes. So I wanted to take this opportunity to tell you more about NDU and the work we have been doing this year. Recent events underscore the ever urgent need for a project like ours to advocate for disabled and neurodivergent students in higher education, to push back on pervasive cultural and media narratives that perpetuate stereotypes, and to advocate movement away from a medicalized, pathologizing, and criminalizing model of disability and mental illness. Central to our project is changing the dominant discourse on mental health, which often invisibilizes people with lived experience, the very people who should be centered in these discussions.
In keeping with the original intent of foundational scholars like Kassiane Asasumasu, Judy Singer, and Nick Walker, we support a broad and inclusive definition of neurodivergence, which encompasses neurocognitive differences such as autism, ADHD, and dyslexia, as well as psychiatric diagnoses including psychosis, PTSD, and depression. Also, in keeping with the tenets of the neurodiversity paradigm, we advocate for movement away from an impairment- and pathology-focused model of disability, including diagnostic classification, except to the extent that such biomedical categorization is necessary for receiving services and support within existing systems. We also acknowledge that not all neurodivergent people identify as disabled, and furthermore that an implicit bias often operates against those with invisible disabilities. Ultimately, we believe that neurodivergent and disabled people should be allowed to determine their identities and define the boundaries of ability.
Our project complements without overstepping on the work of other disability justice organizations such as Project LETS, which advocates for Mad, mentally ill, neurodivergent, and Disabled (MMIND) people. Project LETS, which was founded at Brown University, has done groundbreaking work on college campuses to reduce stigma by organizing spaces for MMIND students to advocate for each other and implement community care. The founding director of Project LETS, Stefanie Lyn Kaufman Mthimkhulu, is a member of our Advisory Board, and we encourage students to reach out to Project LETS to begin reshaping the discourse on mental health on their own campuses.
While we acknowledge that within our capitalist framework, small organizations like ours are in a de facto competition with each other for limited funds and resources, we see our real “competition” as the larger, corporate-funded advocacy organizations such as Autism Speaks, NAMI (and its offshoot, the Treatment Advocacy Center), and Active Minds that dominate the current mental health discourse while touting a very pro-pharma, pro-carceral, and pathology-centered model of disability. One of the main motivating factors for the creation of NDU was our observation that, during the past decade, as the media has perpetuated harmful stereotypes associating mental illness and interpersonal violence, organizations like NAMI have been inexcusably quiet, enabling lawmakers to enact policies that harm our communities rather than protecting the most vulnerable. NDU seeks to amplify the critical voices that challenge the dominant cultural and media narratives about us, and to organize to enact policies that actually nurture and heal rather than harm.
Our main focus since we started developing NDU last year has been the college ranking system that we designed specifically for the needs of disabled and neurodivergent students. We started collecting data in March of this year, and have already received over 100 responses from students at private and public universities including Stanford, Harvard, and U Penn, as well as UC Berkeley, U Massachusetts, and U Michigan. During this first phase of data collection, we're focusing on large universities, but we eventually plan to open up the survey to students at small liberal arts colleges and community colleges. At the end of this year, we plan to publish a report with our initial findings as well as an updated version of the website.
Our rating system comprises 17 precisely defined metrics based on four pillars of Support and Accessibility; Inclusion; Safety; and Critical Pedagogy. Our goal in choosing 17 metrics was not to be comprehensive, but rather to capture the most fundamental aspects of the neurodivergent and disabled students’ experiences that are amenable to making cross-campus comparisons. We had to balance considerations of survey design, use, and data collection, along with feasibility of measurement. Our goal was not to create a scientifically valid instrument, but rather a medium to validate the truths of our lived experiences, one that is often erased by those who presume to speak for us. This project is part experiment and part work of art.
As part of our broader mission to advocate for neurodivergent students in higher education, we are committed to shedding light on the McCarthyistic policy and practice of identifying and reporting “Students of Concern” (SoC) at US college campuses, which codify discrimination against neurodivergence and disability. These policies enable faculty to view disabled students with fear and suspicion, and discourage students from seeking help. As Dr. Melanie Tucker, a Vice President and Dean of Students at Maryville College, wrote in one of the first critical scholarly works on SoC, “[I]f these students are increasingly construed as concerning, with a need for case management or some other type of intervention, there is a risk for assigning yet another label to students with disabilities or reinforcing the assumption made by some who regard having a disability as negative.”
SoC in practice manifests as a form of precrime, associating signs of mental illness with “POTENTIAL” (but always to be construed as inevitable) violence, and using these weaselly and fallacious carceral logics to justify the criminalization, policing, and exclusion of neurodivergent individuals. As Liat Ben-Moshe writes in Decarcerating Disability, “When disability or madness is present, it is conceived of as a deficit, something in need of correction, medically/psychiatrically or by the correction industry, but not as a nuanced identity from which to understand how to live differently, including reevaluating responses to harm and difference.”
Although SoC policies are publicly touted on university websites as tools of care and support, in the past decade we have too often seen that in practice such policies are used to coerce students into taking medical leaves and often force disabled students out of higher education altogether. These policies are discriminatory, and have caused real harm to students who have been flagged, especially multiply marginalized students and particularly racially minoritized students. Outside our campuses as well, we see policies that are touted as “CARE” being used to incarcerate and disappear the most vulnerable and marginalized people from society.
This policing of neurodivergence on college campuses should be considered in context with other indicators of growing fascism around the country, including the rolling back of women’s rights by the US Supreme Court, the backlash against the MeToo movement, and reactionary political campaigns built upon platforms that would stifle LGBTQ expression and equality. The policing of neurodivergence stems from the same white supremacist, patriarchal, and colonial ethos that polices trans and gender non-conforming bodies, women’s bodies, and Black bodies.
As we too often see with these injustices, the harms that disabled people experience frequently fall outside the scope of legal justice, and a culture of silence reinforces the shame and powerlessness often felt with victimization. The probability of bringing a discrimination case successfully to court, let alone winning, is discouragingly low, and the burden of proof on claimants is prohibitively high. That is why we believe that advocacy beyond the legal arena, including grassroots organizing, is so important for students who have been harmed but otherwise have no platform on which to speak their truths. On this website we plan to share stories of students who have been harmed, and to shine a steady light exposing the ableism and institutional discrimination in academia and higher education.
On January 31, Quinn O’Connor was one of the many students participating at a UCLA sit-in to advocate for remote (digital) access to classes. O’Connor, a co-founder of the UCLA Disabled Student Union, recalls a special moment on the second day in which protesters shared photos of their companion animals. It was a moment of balance; she recalls savoring the feeling of shared community and activism.
Over the past year, student disability organizations across the country have been holding protests, circulating petitions, and creating initiatives to advocate for accessibility, safety, and remote access on their campuses. UCLA’s Disabled Student Union, which finished their sixteen day long sit-in on February 17, are among the many disability organizations in the U.S. fighting for disability equity. In doing so, they have often bonded into a stronger community.
“In the next five to ten years, I won't be in college anymore, but I'm really grateful to have been a part of what I see as the start of the next disability rights movement in America,” said O’Connor, a senior at UCLA, in a Zoom interview.
With vaccine rollouts and declines in COVID-19 cases, colleges all over the U.S. have been loosening COVID policies, removing remote access for classes, and transitioning to full capacity in-person classes. However, many disabled and immunocompromised students say that these plans don’t take them and their needs into consideration.
Sophomore at American University, Katherine Greenstein, said that throughout the pandemic, they were fed up with how people’s actions were putting disabled lives in danger. In college, Greenstein—who uses the pronouns “they”—said they started working towards disability justice and community spaces through DSUs.
During the past several months, Greenstein and others have been petitioning for the university to require mandatory COVID-19 testing. The petition gained nearly 1,700 signatures, as well as dozens of letters of support from people in student organizations and support from 70% of the student government association.
“At this point, it's so beyond anything I thought I knew how to do in terms of organizing, but I realized that I just never shut up. My parents always said that once I get out of high school, I'm going to know what I'm doing in my life and be really good at it,” Greenstein said in a Zoom interview. “It took COVID and being pissed and needing to find my people and needing some sort of community. All of these things kind of came together, and now it's advocacy at a university that doesn't want to listen to us.”
This interest in disability culture and justice was galvanized during the pandemic and prompted Greenstein to say yes to co-founding the Disability Student Union at American University in Washington, D.C. In turn, having that community also helped them identify outwardly, proudly, and positively as being disabled.
“Over the pandemic, I got really into identifying positively as disabled and being outwardly and proudly disabled. It became my main identity. I've been queer for a really long time, I've been Jewish my whole life, but like, this is my identity [too], this is the thing that makes me the most who I am,” said Greenstein.
O’Connor said that a lot of student organizations have grown out of the pandemic due to the exasperation over disability issues that disabled students have felt for decades. In the Fall of 2021, Mack Thompson founded the first disabled student organization, the Disabled and Ill Coalition, at the University of Kentucky to build a sense of community for disabled students during the pandemic as well as start activist efforts to improve the university.
Thompson and other students noticed many issues on campus that impact disabled students, from lack of accessible entrances to poor social distancing policies. They are collecting petitions protesting the difficulty of scheduling an appointment at the college’s Disability Resource Center.
According to the National Center for College Students with Disabilities (NCCSD), nearly every college in the U.S. has an office that works with disabled students to make sure that campus classes, programs, buildings and other facilities, and services are accessible.
Accommodations are given to students on a case by case basis by these services. However, accessibility issues persist. For instance, in May 2021, O’Connor and UCLA’s Disabled Student Union took their first steps into the greater advocacy space when the college’s administration took away students’ accommodations for priority enrollment without due process.
Since then, UCLA’s Disabled Student Union has been pushing for increased accessibility, primarily around remote access during the pandemic. After eight months of this advocacy effort, UCLA’s administrators and Academic Senate released an official endorsement of hybrid learning and dual modality for students to the entire campus community on April 4. Though the fight for hybrid learning isn’t over at UCLA, this was a major victory for the Disabled Student Union.
At UC, there is a phrase used by disabled students called “Community, not compliance,” which O’Connor said resonates with them and the work that the Disabled Student Union has done. They said that being compliant is not enough to support a growing community at universities, and that disability needs to be treated as a community.
“We really strive to treat disability as an identity, and a community of people of an underrepresented minority. In hearing people's experiences with the accommodations office, and with the university as a whole, it is so clear that this university does factor in the bare minimum legal requirement of the [Americans With Disabilities Act (ADA)]. I think that in our advocacy work, we've made it clear that the ADA and compliance is not nearly enough to serve an equitable education to its students,” said O’Connor.
While many colleges in the U.S. have a disability services office through which students can acquire accommodations, there aren’t many spaces for disabled students to come together as a community. According to Diverse Issues in Higher Education, only ten disability cultural centers exist among all the U.S. college campuses.
Disabled student organizations came into existence to foster such a communal space, while also advocating collectively for accessibility and disability equity. In October 2021, Greenstein created a Discord channel for disabled students and Disabled Student Union leaders nationwide to connect, build community, and support one another’s advocacy and initiatives.
“It is so freeing to be able to sit and not only identify with being disabled yourself, and to not only have pride in yourself and your own identity, but to be able to take pride in a community. Knowing people who I could talk to who shared something about our past, they were able to help me realize that I can just identify [as disabled], and that's fine. It's radical, and that it's amazing and freeing and loving and powerful,” said Greenstein.
O’Connor said they see the disabled students who they work with, as well as those across the nation right now, as the next political leaders in disability rights. For the future of this advocacy, Greenstein hopes that colleges provide access and safety during the pandemic to keep disabled students safe, and that disabled students don’t feel alone in this advocacy work.
“The [disabled] community just needs to be treated well. A lot of people think they're treating us well right now, I can guarantee to them that they are not,” said Greenstein. “I feel like we for so long have been struggling. There's so much shit happening all the time that is so bad. But having moments of just disabled joy and disabled love, I just want us to be happy. I just want us to be safe and okay.”
Editor’s note: A version of this essay was presented at the CUNY Neurodiversity Conference on March 18, 2022.
Although other cultures developed systems of higher education prior to the West –- the first university was established by a Muslim woman in Morocco in the 9th century -- North American higher education is based on the British university system which was established in Oxford around 1096.
The majority of those who attended Oxford came from privilege, wealth, and influence. Generally, these were white, Christian, and English speaking males. Women, minoritized people, and disabled people were not readily accepted into the university, and therefore our voices, experiences, and perspectives were excluded in the very construction of the culture and norms of higher education.
Today, we still see the legacies of system-designed barriers at play. Universities practice gatekeeping to attract the ‘right’ kind of students while making it difficult, uncomfortable, and unwelcoming for others through institutional policies, admission criteria, types of courses offered, assessments, etc. The very terms we use to describe our most venerated post-secondary institutions such as “red brick universities” and “Ivy League” have connotations of rarefied exclusivity that are inextricable from money and class.
This is referred to as the ideology of the steep steps where an aesthetic of physical inaccessibility crosses over into the classroom as “the ethic of higher education still encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual (or physical) weakness” (Dolmage, 2017).
From the architecture of our campuses, to the post-secondary curriculum, and the exclusion of certain voices in decision-making, these institutions continue to reflect a Eurocentric and able-bodied perspective of the world that does not readily include diverse voices and experiences. When it comes to power, wealth, prestige, and achievement in education, the majoritized white citizens of our nations -- especially those who are able-bodied, cis, and male -- have historically benefitted over non-white, disabled, and/or gender non-conforming citizens.
Just as unprecedented levels of income stratification (abetted in no small part by private universities) mark our modern economic caste system, these discrepancies in higher education barely mask the racial caste system in which some are valued and benefitted more than others. This exclusion extends to those who are neurodivergent, minoritized, and/or multiply disabled. Hence, neurodiversity is inextricable from discussions about diversity and representation in higher education, because our education system has traditionally favored homogeneity (Smagorinsky, 2020) and continues to gatekeep to uphold these hierarchies.
According to a 2016 Hechinger Report, Black students represent only 5% of the student body at US flagship universities, even sixty years after Brown v. Board of Education, despite representing more than 13% of the US population. Furthermore, “the higher education system actually works against poorer students... by tracking them toward colleges with fewer resources and lower graduation rates."
In media and news stories, we still see Black males portrayed as “figures of barely contained or imminent violence” (Baker, 2019) while Black women are often depicted as aggressive, loud, and unreasonable. With similar harmful tropes employed against other minoritized cultures, it is difficult for minoritized and disabled students to ask for and receive the accommodations we require to have good outcomes in higher education. Whatever we request -- whether resources, accommodations, or support –- is firstly perceived through a minoritized lens.
Even when policies mandate our human right to accommodations, they are often denied us by classroom instructors. All of this is compounded if our disabilities are not visible. Anyone with a neurological disability such as myself can share stories of how instructors have treated our request for accommodations as if we are faking our disability or seeking some sort of advantage.
More often than not, we are on the receiving end of comments accusing us of being lazy and trying to get an education without doing the hard work that ‘normal’ students are doing. Conversely, when I make a request for my physical disabilities, these same instructors wouldn’t question my need, because they generally understand that physical disability requires support and accommodations. (This is progress, undoubtedly.) However, those of us with invisible disabilities are often openly treated as if we are lying.
Those of us who are minoritized and disabled often drop the disability identity if we can, because we are already stigmatized for our differences. This means we are not getting the timely resources we need. As we push ourselves towards exertion to appear ‘normal,’ when a crisis happens and we finally admit our disability, we are then perceived as making excuses or trying to game the system.
It is not uncommon to be pre-judged both for being a minoritized person and then exponentially so for being disabled. This double jeopardy causes a cascading series of events that can lead to us falling through the system-created cracks. These systemic cracks and barriers are examples of how racism and ableism are baked into the very core of the higher education system, and are a direct result of the exclusion of diverse voices in the design of our education system from its early history.
We know through research that when we look at factors such as health, education, and jobs, there are measurable differences in outcomes for minoritized individuals and white individuals. Black and minoritized citizens are more likely to have adverse childhood experiences than their white peers by kindergarten.
K-12 Black and minoritized students generally experience more violence, less exposure to creative opportunities such as art, dance, and theatre, less support, and more stigmatization. If we see the education system as a system of power like other historical systems of power such as healthcare and the justice system, then we see that there is concerted effort among these systems of power to constitutively produce and uphold themselves in ways that perpetuate the oppression of marginalized individuals in society.
A system of power self-organizes and resists challenge in order to protect itself from change while reinforcing white perspectives, patriarchy, and heteronormativity. We can see therefore why it might be difficult for such a system of power to adapt and change without compelling motivation, which must therefore come from those of us on the outside, on the margins.
The civil rights movement not only changed the education system and social fabric of the US, through peaceful marches, sit-ins, public lectures, and grassroots protests, it became a blueprint for what was possible in creating system-wide change to power dynamics.
The disability rights movements of the 70s was in part inspired by the civil rights movement and other social movements such as the protests against the US involvement in the Vietnam war. The disability rights movement forwarded the voices of those with disabilities in the fight for our own rights.
More recently, in 2013, three Black women activist organizers created a political movement centering Black liberation, creativity, and joy. This movement was called Black Lives Matter (BLM) in response to the murders of Trayvon Martin, Michael Brown, Sandra Bland, and too many other Black lives lost to state violence.
These social justice movements created a groundswell of change that continues to break through and reverberate throughout the ivory tower of academia.
By the time I began applying to college (from a private high school not required to provide accommodations, nor recognize my needs at all) I had already logged a brief lifetimes’ worth of experiences of medical and psychiatric mistreatment. I had also already received diagnoses that, when weaponized, cast doubt upon my suitability for self-determined “college life.” However, my college application process went similarly to a sane, neurotypical, queer/trans student’s. I assessed schools based on factors like price and size and major availability, and I also searched the internet for their relative queer- and particularly trans-friendliness. I did not anticipate perfection, but did need to graduate.
Fortunately, I ended up thriving. My queer- and trans-friendly alma mater, while still rife with structural and incidental ableisms, was a relatively “progressive” space in terms of disability on campus and in the classroom. Our office of disability services offers mentorship programs and social events, and the neurodivergent community on campus has steadily grown in influence and visibility. Still, I and other students like me knew and continue to know the threat that lurks beneath these improvements: namely, the threat of psychiatric incarceration, and the tactics of surveillance that extend institutionalization far beyond hospital walls.
In an age of growing gun violence –– due, I say in no uncertain terms, not to “mental illness” but to white supremacy, capitalism, and cisheteropatriarchy as they intersect with and manifest in a culture of gun-worship –– the “risky student” becomes a scapegoat for wrongs too big for the university to handle. They become a pest to be expelled (literally) from the student body, as if doing so expels the systems of structural violence that delivered us to this moment in the first place. They become objects of the institution’s perpetual policing.
And who, exactly, is that risky student? Some speak too much in class, some too little, some at the incorrect time, others to themselves: these are each framed as modes of verbal transgression. Undoubtedly, the riskiest students are the ones deemed not only patients but criminals or criminals-in-waiting, those who are feared would bring violence to others. Already-marginalized “risky” students –– students of color, of marginalized genders, poor students, multiply-disabled students, and more –– face compounding narratives that their/our presence on campus is always and already a threat. Risky students, especially multiply-marginalized risky students, are treated as issues to be weeded from the safe campus community, whose health is equated with members’ attainment of “normalcy.”
As we have seen, these pushes for safety on campus frame such students as the enemy. Even the most “progressive” institutions, my alma mater included, have quietly pushed many disabled students off of campus and out of academia. Again, we’re liabilities. I was deliberately vague about my own needs and experiences, and specifically avoided divulging my psychological history to employees at the counseling center, for precisely this reason: I did not want to be risky enough to send home. Myself and other students readily conceal our experiences, at great personal and emotional cost, in the hopes of navigating academic spaces with a modicum of freedom. Sometimes we succeed, but always at a price. So where do we go?
This question was on my mind when Bowen and I started conceptualizing Neurodivergent-U (NDU). With the development of NDU, we turned attention to the ableist notions of “risk” and “danger” that animate carceral and exclusionary policies toward disabled, Mad, and ND students on college campuses. Change is necessary in order to make campuses not just safe, but survivable for disabled students; we must be cast as protagonists in our own stories, rather than afflicted, disruptive invaders in spaces not meant for us. This is particularly salient in the aftermath of Atlanta’s misogynistic, anti-Asian murders, in which the perpetrator’s white supremacist and cisheteropatriarchal ethos has been dismissed as the individualized illness of “sexual addiction” –– we must refuse “illness” as itself a cause of violence at every turn, and foreground autonomy instead. We must focus on sticking together, not pushing others out. We must focus on these individual acts as evidence of institutionalized oppression, rather than personal pathology. We must identify institutions themselves as daily dangers to our collective health and safety, rather than expelling those of us trying to survive.
How to do this? To even hope to change a university –– to pose a “risk” to the status quo –– you have to stick around. In order to stick around, you need to be able to choose a program that you will be able to survive. NDU seeks to facilitate this process by providing a database of institutions alongside relevant disability stats. They also feature mechanisms for current and former students to share reviews and long-form experiential essays relating to being disabled, and particularly mentally disabled/Mad, on campuses on which we are perceived as either enemies or hindrances. It is NDU’s goal to collaborate with disabled peers of all backgrounds to make assessments of safety, accommodation, and openness similar to those I conducted back in high school, and to share these assessments with others. In short, NDU seeks to build a world in which we can learn as we are without fear of retaliation, where we can be open about all aspects of our lives while retaining our autonomy, and where the relationships we build –– scholarly, personal, or otherwise –– are based not in fear but in trust.
As cofounder and former co-head of NDU, and as an ongoing supporter of its mission, I am overwhelmed and humbled at the opportunity to welcome you to this space. Here, the access to choices so often denied disabled, Mad, and neurodivergent people may once again be possible. While our work, as disabled activists, must often begin and end with the assertion that we are persons, Bowen and the NDU team take this demand for humanity one necessary step further: not only are we people, but we are people with unique stories, motivations, and values that are too often erased by those who would assume to speak for us, and more often, against us. The university thwarts our ability to exist as full persons for as long as our very existence is deemed a threat; the university’s value judgement can, furthermore, disrupt our access to social and economic life. It is imperative, for our lives, our livelihoods, and most importantly, our happiness, to cultivate educational spaces wherein difference is welcome and dissent encouraged. NDU represents a grassroots effort to disrupt the university’s treatment of “risky” students as disposable, and instead opens a conversation about making space for all of us to thrive.
While I am no longer at the helm of NDU, I am confident in its ability to facilitate these conversations and to archive university maltreatment. Decades of hypersecuritization have allowed for university abandonment of students marked as suspect, and I am excited to play a role in this project of knowledge-sharing grounded in lived experience and love.