Celebrating Neurodiversity: Intersections of Neuroscience & Disability Justice by Tiffany Chen

celebrating neurodiversity INTERSECTIONS OF NEUROSCIENCE & DISABILITY JUSTICE

By Tiffany Chen july 2020

I'd like to give a special thank you to Professor Levin and Pomona College for supporting this project through the Remote Alternative Independent Summer Experience fellowship. Thank you to Bita and Izzy for sharing your experiences and wisdom with me, and for all the advocacy and invisible work you've done for our peers. Finally, thank you to my zinemaking friends and everyone who has inspired me to seek out this knowledge in hopes of bringing new understandings of access to the Neuroscience community.Â

TABLE OF CONTENTS

Page

About This Zine

What is Neurodiversity?

"Neurogenesis I" by Greg Dunn

Medical vs. Social Models of Disability

Disability & Neurodivergence

Ableism

The Disability Justice Movement

A Brief History of Disability Rights

On Mental Health, Accommodations, and Stigma:

Racialized Disability & the School-to-Prison Pipeline

Disability & Society

"Passing", Masking, and the Issue with Functioning Labels

On Disability, Self-advocacy, and Ableism:

A Quote by Leah Lakshmi Piepzna-Samarasinha

Resources

some statistics

an interview with bita tristani-firouzi

a concept web

an interview with izzy davis

ABOUT THIS ZINE Hello and welcome to my zine! My name is Tiffany Chen and I'm a rising senior at Pomona College, majoring in Neuroscience. To preface, I'd like to say a few things about my reasons for creating this zine, and why it feels important to draw upon disability justice discourse as a Neuroscience student. In my coursework, I've spent a considerable amount of time learning about the chemical underpinnings of psychiatric illness, the neurology of movement disorders, molecular basis of development, and so on. However, the piece that has felt missing for me throughout these conversations accompanying my studies is that of the lived experience of individuals with these conditions we study: developmental and learning disabilities, mental illness, and behaviors associated with disability. As I have grown more knowledgeable about topics within Neuroscience, I've also realized how unequipped I feel to speak about this science in ways that humanize and advocate for the wellbeing of neurodivergent communities. Thus, I am creating this zine to navigate and address some of my own unanswered questions and share this research with others, particularly in the science community.

In the Seaver Neuroscience lounge, there is poster of a brain that reads, "Celebrate Neurodiversity". Since first noticing that poster a few months ago, I began to explore what it means to celebrate neurodiversity in a way that is informed by neurodivergent people at the forefront of disability justice work. In creating this zine, I am hoping to gain new language and frameworks for interacting with people and places that challenge ableism in its many forms. I want to carve out more space to critically reflect on the ways in which Neuroscience has been shaped by, and perpetuates, ableist assumptions. I also want to acknowledge that it is a privilege to learn about ableism and disability out of interest and not out of necessity or survival. As a neurotypical, able-bodied person, I do not intend to speak for individuals who identify as disabled and/or neurodivergent. I do, however, wish to bring a much-needed sociopolitical analysis to conversations surrounding disability in science communities.Â This project is both a personal commitment and a call to celebrate neurodiversity on different scales: the individual, interpersonal, and collective. As the culmination of my research and the words of others, I hope that this zine might serve as a jumping-off point for continued reflection and action to demonstrate new forms of support, creativity, and consciousness as students, scientists, educators, and community members.

WHAT IS NEURODIVERSITY? Neurodiversity refers to the infinite biological variation in human brains and minds, or the diversity in neurocognitive functioning that exists among a group (Walker, 2014). This term was first used by autistic Australian sociologist Judy Singer in 1998, largely in response to the growing field of Neuroscience and its applications to medicine. Thus, 'Neurodiversity' was coined to legitimize the experiences of those on the autism spectrum, in anticipation of the ways in which science-based practices might continue to be weaponized against this community (Ciampi). In her work, Singer argued that neurocognitive difference would come to occupy a new political identity alongside race, class, and gender. Autism is one example of neurodivergence, which encompasses an extremely broad range of ways that one's brain and nervous system can be understood as differing from societal standards of "normal". While some forms of neurodivergence have genetic or biological origins, others are mostly produced by experience (ex. trauma, use of psychedelic drugs, etc). This can ultimately impact how a person views their form of neurodivergence as it relates to their sense of selfhood, personality, and way of interacting with the world. As a label, 'neurodivergent' does not strictly define any particular set of conditions; however, people with developmental disorders, learning disabilities, psychological disorders, and/or mental illness may all identify as neurodivergent.

Ciampi, Marcelle. “Meet Judy Singer Neurodiversity Pioneer.” My Spectrum Suite (blog). Accessed June 15, 2020. http://www.myspectrumsuite.com/meet-judy-singer/. Walker, Nick. “Neurodiversity: Some Basic Terms & Definitions,” September 27, 2014. https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/.

"Neurogenesis I" (cropped and edited) by artist and neuroscientist Greg Dunn

According to the medical model, disability originates from an individual's biological impairment(s), which are "directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals" (Disabled World, 2010). Under this model, impairment poses a problem for which a cure or medical treatment is the solution that would restore an individual's capacity to participate in more "major life activities". Thus, medical intervention is regarded as the primary focus for improving the quality of life for these individuals. Furthermore, clinical conceptions of disability have given rise to a body of scientific research that operates on a "deficit model", which characterizes

medical model of disability disability based on what is "lacking", "deficient", "defective", or "abnormal". This framework is built on, and has contributed to the pathologizing of behaviors that in many non-Western cultures, are not necessarily viewed as problematic or unusual. For example, the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), identifies "abnormalities in eye contact and body language" (ex. discomfort with holding eye contact) as a characteristic trait for diagnosing Autism Spectrum Disorder (CDC, 2016). While these clinical diagnostic criteria may be helpful in some regards, they have also reinforced the idea that only certain types of (outward) expression are normative and thus valuable to society. CDC. “Diagnostic Criteria Autism Spectrum Disorder (ASD).” Centers for Disease Control and Prevention, April 18, 2016. https://www.cdc.gov/ncbddd/autism/hcp-dsm.html. Disabled World. “Models of Disability: Types and Definitions,” September 10, 2010. https://www.disabled-world.com/definitions/disability-models.php. “Introduction to the ADA.” Accessed June 11, 2020. https://www.ada.gov/ada_intro.htm.

According to the social model of disability, societal barriers create disability, rather than an individual's own impairments. This model recognizes that normalized standards of ability (physical, cognitive, intellectual, etc.) are not neutral or objective realities for every body and mind, and that disabled people are whole as they are. Individuals whose brains are considered "normal" according to the dominant, medical standard, are neurotypical, whereas those whose brains function differently from this norm are called neurodivergent (coined by neurodivergent activist Kassiane Asasumasu). Many neurodivergent people also view their form of neurodivergence as fundamentally inseparable from

versus social model of disability their identities and the way they are perceived by society; the majority of these individuals reject personfirst language ("person with autism") in favor of identityfirst language ("autistic person") for this reason, although individual preference should always be honored. The Neurodiversity Movement, which emerged in the 1990s as an expansion upon the Autistic Rights Movement, is a social justice movement that politicizes neurodivergent identity and "seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent [community]" (Walker, 2014). Under the social model of disability, the responsibility lies within an ableist society to make the changes necessary to create true inclusion and access for disabled people.

Walker, Nick. “Neurodiversity: Some Basic Terms & Definitions,” September 27, 2014. https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/.

DISABILITY & Recent data from New York and Pennsylvania show that people with intellectual and developmental disabilities are around 4 times more likely to contract COVID-19, and at least twice as likely to die from infection than the general population (Shapiro, 2020).

Among those diagnosed with autism, there is a high co-occurrence of mental health problems, for which depression is most welldocumented. Up to 40.2% of autistic adults also experience a lifetime diagnosis of depression, according to recent studies (van Heijst et al., 2020).

According to a 2017 study by the American Journal of Public Health, a third to a half of individuals killed by law enforcement have some type of disability, and more than 55% of Black people with disabilities will be arrested by age 28 (Cohen, 2017).

"The COVID-19 pandemic highlights both what accommodations are already possible and how far society is from fully supporting the needs of people with disabilities, who make up around 15% of the global population. As society grapples with how to carry on with everyday life during the outbreak, people with disabilities are often left behind." (Al-Heeti, 2020)

Sources: Al-Heeti, Abrar. “COVID-19 Exposes Hypocrisy over Lack of Disability Accommodations.” CNET, May 21, 2020. https://www.cnet.com/health/the-covid-19-crisis-highlights-how-far-accessibility-still-has-to-go/? fbclid=IwAR00qxdk0juNLwXVG1gTUp5AbIk45-NwQLsqBvDM9jvL11BaZ4q0Dza6Qvo.

NEURODIVERGENCE some statistics

20% of the U.S. population identifies with disability, the leading cause of which are psychiatric disorders. 40% of the homeless population have a documented disability. While 68.4% of disabled people state they would prefer to have a job, only 19.2% is employed. Disabled people are 3 times more likely than able-bodied people are to experience rape or sexual assault, and this number increases to 5 times more likely if the victim has multiple disabilities. (Rosenthal, 2019)

1 in 59 (or 1.69%) children have at least one learning disability (LD). Of those with an LD, approximately 1/3 also have attention-deficit hyperactivity disorder (ADHD). Although the rate of LDs is equal between boys and girls, two-thirds of those with an LD diagnosis are boys. (Peterson, 2019)

Cohen, Ronnie. “Young People with Disabilities More Likely to Be Arrested.” Reuters, November 10, 2017. https://www.reuters.com/article/us-health-disabilities-law-enforcement-idUSKBN1DA2SZ. Peterson, Tanya. “Learning Disabilities Statistics and Prevalence.” HealthyPlace, September 17, 2019. https://www.healthyplace.com/parenting/learning-disabilities/learning-disabilities-statistics-and-prevalence. Rosenthal, Keith. “Appendix: Current Disability Statistics.” In Capitalism & Disability, 259–63, 2019. Shapiro, Joseph. “COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities.” NPR.org, June 9, 2020. https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-arehigher-among-those-with-intellectual-disabili. van Heijst, Barbara FC, Marie K Deserno, Didi Rhebergen, and Hilde M Geurts. “Autism and Depression Are Connected: A Report of Two Complimentary Network Studies.” Accessed June 18, 2020. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7168804/.

ableism (n.) discrimination or bigotry against people considered disabled by mainstream society

"Ableism works as a mechanism of white supremacy, capitalism and colonization by devaluing disabled bodies and minds as unnatural, invalid and unworthy across the lines of race, gender, poverty and citizenship. It grants credibility and true humanity exclusively to able bodied people and as such plays a central role in determining which individuals or communities are deemed the useless eaters, the dangerous, the unfit, or the disposable." - Showing Up For Racial Justice

Invisible Disability Project. “Words Matter.” Accessed June 14, 2020. https://www.invisibledisabilityproject.org/words-matter. Showing Up For Racial Justice. “Disability and Access.” Accessed June 13, 2020. https://www.showingupforracialjustice.org/disability-and-access.html.

the disability justice movement was created in 2005 by disabled queer and trans activists of color Patty Berne, Mia Mingus, Stacy Milbern, Leroy Moore, Eli Clare, and Sebastian Margaret, who sought to more fully address ableism through an intersectional framework. This movement centers multiply oppressed, disabled communities of color, whereas the mainstream Disability Rights Movement and Disability Studies have not always done so (Project LETS).

graphic from Sins Invalid, a disability justice-based performance project created by and for disabled LGBTQ artists of color Project LETS. â&#x20AC;&#x153;History of Disability Justice.â&#x20AC;? Accessed June 13, 2020. https://projectlets.org/disability-justice.

a brief history of disability rights 1805

Dr. Benjamin Rush publishes Medical Inquiries and Observations, one of the first attempts to formally document mental disorders.

1867

San Francisco passes the first "ugly law", which prohibited “diseased, maimed, mutilated or in any way deformed” individuals from appearing in public spaces, criminalized disabled and homeless people.

1924

Congress passes the Immigration Restriction Act of 1924, which was directly influenced by American eugenicists Charles Davenport, Harry Laughlin, and others. From 1892-1954, medical inspections were conducted at the Ellis Island immigration station, where "feeblemindedness" and disabilities marked a person "likely to become a public charge".

1855

The New York State Lunatic Asylum for Insane Convicts opens, becoming the first facility to institutionalize incarcerated people deemed "insane".

1907

Indiana becomes the first of 30 states in the U.S. to legalize forced sterilizations for "confirmed idiots, imbeciles, and rapists". At least 70,000 sterilizations were performed between 1907 and the end of WW2, although tens of thousands more were done after this period.

1927

In Buck v. Bell, the Supreme Court rules compulsory sterilization for those with mental illness as constitutional. Justice Oliver Holmes states, "Three generations of imbeciles are enough."

1935

The League of the Physically Handicapped, one of the first recognized organizations for disabled people, protests employment discrimination based on physical handicap status in a nine-day sit in at the Home Relief Bureau of New York City.

President Franklin D. Roosevelt signs the Social Security Act, establishing a federal safety net for which unemployed, elderly, and disabled adults are eligible.

1950

Disabled communities, including veterans, successfully advocate for national standards for "barrierfree" buildings and accessible public spaces.

1962

Ed Roberts founds the Independent Living Movement and the first Center for Independent Living in Berkeley, CA. During the 1960s, deinstitutionalization gains momentum and many disabled people are released from facilities and continue to fight for self-determination.

1974

The last "ugly law" is repealed in Chicago, Illinois.

1983

Americans with Disabilities for Accessible Public Transportation (ADAPT) engages in demonstrations across the U.S., initiating a national campaign for physically accessible buses and public transportation.

1990

President George W. Bush signs the Americans with Disabilities Act (ADA) into law, protecting disabled people's right to equal treatment in employment, state and local government services, public spaces, etc.

2006

A bill is passed requiring disability rights history to be taught in K-12 public education for the first time.

1972

Disability rights activists lobby Congress to include civil rights protections for disabled people in the 1972 Rehabilitation Act. The result is the passing of the Rehabilitation Act of 1973, which, under Section 504, prohibits employment discrimination within federally funded programs, on the basis of disability.

1975

The Education for All Handicapped Children Act was passed, mandating full inclusion and access to public education for students with disabilities.

1990

This act is renamed to the Individuals with Disabilities Education Act (IDEA), which expands to specify inclusion of disabled students not only in public education, but in general education classes as well. IDEA necessitates that an Individual Education Plan (IEP) is developed with parental input to more adequately accommodate educational needs for disabled students.

1999

In Olmstead v. L.C., the Supreme Court rules unnecessary institutionalization of disabled people as unconstitutional, defending their right to live in the community and "integrated settings" under the ADA.

Sources: Anti-Defamation League. “A Brief History of the Disability Rights Movement.” Accessed July 17, 2020. https://www.adl.org/education/resources/backgrounders/disability-rights-movement. “Disability History Timeline: Resource and Discussion Guide.” National Consortium on Leadership and Disability for Youth, 2007. Dowd, Katie, and SFGATE. “San Francisco Once Pioneered America’s Cruelest Legislation: Ugly Laws.” SFGate, March 2, 2020. Lombardo, Paul. “Social Origins of Eugenics.” The Eugenics Archive. Accessed July 16, 2020. http://www.eugenicsarchive.org/html/eugenics/essay9text.html.

on mental health, accommodations, and stigma: an interview with bita tristani-firouzi Can you introduce your background in mental health advocacy? Bita: I am the President of the 5C Mental Health Alliance and I have been so for the past 2 years, ever since sophomore year. And I’ve done a lot of work with advocacy and trying to improve resources, mostly at Pomona but also a little bit at the other 5Cs. I’m also a crisis counselor for the national Crisis Text Line, and I do support for the community in Salt Lake City regarding mental health, so this is something that I’m really interested and involved in, in terms of what does mental health mean, how do we contextualize it in the midst of everything else, and what can we do to destigmatize it. Have you found the accommodations system to be helpful? Well, accommodations is tricky at Pomona, 'cause there are a lot of accommodations available, but nowhere—at least in my experience with Pomona—was it necessarily advertised that there were specific things we could do, or how to go about that process. So I think a lot of it was trialand-error for me, trying to figure out what accommodations do I need, how do I get this. I think personally, admin was pretty willing to give me the accommodations that I needed, but I think part of that was disclosing a lot to admin and to my individual professors, this is what’s going on in my personal life [...] But I think for a lot of people who aren’t comfortable telling professors and the administration, necessarily, all the details about their trauma and personal life, I think it can be a little bit harder for them to want to give accommodations. Can you speak to any clubs or parts of our campus culture that have particularly shaped your experiences with mental health? The clubs I've been involved with have been really instrumental for helping me navigate through Pomona, like the Mental Health Alliance, at least when I was a freshman at Pomona, was my favorite place to be, because I felt like I could talk about all of the things that were going wrong, and it was a place where seemed like it was okay to talk about that stuff. DIDA (Disability, Illness, and Difference Alliance) has been a really great resource as well. The 5Cs do a decent job of talking about mental health […] I think for a little bit more difficult or more unknown mental illnesses, I think—at least I personally have experienced a little bit more—not discrimination, but people sort of looking at me weirdly […] like, talking about it is fine, but when you’re actually experiencing something, I think it’s a little bit, the culture, maybe not just at Pomona but in general right now, is kind of like, I don’t know what to do or how to deal with this, so I’m not really going to.

What type of work does the Mental Health Alliance do? I think each year it sort of shifts in terms of what we focus on, because it’s so student-based and it's so dependent on what people are interested in at any given time. I’d say the club is typically about between 5 to 10 people coming to meetings—it’s mostly Pomona and Scripps and CMC […] we hold a lot of events that are panel discussions about different topics, we did mental health in STEM, mental health abroad, stuff like that. We also do student speaks […] so that’s an event where people talk about their experiences on campus mental health-wise, and usually we try to get people with a really broad range of mental health experiences, which I think is nice. And then in the spring we do the same thing but with professors [...] So stuff like that. But I think since I’ve become involved with it, I’ve been trying to push admin to do certain things and have used the group also in terms of working with other student groups. Are there things you've noticed or learned from your roles as far as destigmatizing mental health issues goes? I think with a lot of mental health, or mental illness, that I’ve experienced, I’ve always felt—and this is not just at Pomona but in my life in general—is I feel like we talk about it a lot, but I hardly ever see it in person. I feel like I’m the only person I know who’s cried 50 times on campus or had to leave class because of a panic attack […] it’s isolating I guess, in that way, and other people’s reactions to it also is just like, What is happening with this person. I think physically being there for someone and listening to them and validating their experiences [is] really really powerful. Like, you don’t need to necessarily know how to fix them, but just to be validating that their experiences are really difficult, and that it’s ok to feel the way that they are.

14 14

racialized disability & the school-to-prison pipeline At the intersection of criminal justice and disability justice discourse, scholars and activists study how ableism and racism compound upon one another to criminalize disabled youth and/or Black, Indigenous, people of color (BIPOC). In the U.S. education system, this serves to funnel young, disabled BIPOC into the school-to-prison pipeline as well as exacerbate existing mental health issues as a result of isolation and lack of proper support in the school system.

diagnoses and discipline A recent study reported racial disparities in the diagnosis of attentiondeficit and hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD) between Black and white children. While ADHD and ODD both present with behavioral expressions that may be read as "defiant and disruptive" and both are similarly prevalent across racial groups in the broader epidemiological literature, this study found that diagnostic rates from community practitioners suggested otherwise. These data revealed that Black children are disproportionately diagnosed with a disruptive behavior disorder compared to white children; white children are also more frequently diagnosed with ADHD alone (without a comorbidity with ODD) than Black children are (Ballantine, 2019).

Youth diagnosed with ODD, as opposed to ADHD, face harsher disciplinary consequences for their behavior. Zero tolerance school policies, for example, provide grounds to punish students on the basis of showing "disrespect and noncompliance", which is ill-defined such that it criminalizes not only disabled youth, but Black youth and youth of color specifically. In many cases, this leads to out-of-school suspensions, which for disabled students, "are often the entry point in the pipeline to the criminal justice systemâ&#x20AC;? (Mader & Butrymowicz, 2014). In the 2011-2012 school year, more than 25% of Black boys with disabilities were suspended (Hing, 2014).

special education and the law Approximately 85% of incarcerated youth have a disability, while only 37% have received special education. Inclusion in the special education system alone, however, is not necessarily the solution to disrupting the pipeline to prisons; the glaring lack of funding and appropriate resources within special education still leaves these students on average twice more likely than their peers in general education, to be suspended.

Under the 1974 Individuals with Disabilities Education Act, or IDEA, students with disabilities were given the right to a “free, appropriate public education” under federal law. Prior to that point, states and school districts did not provide public education to nearly half of children with disabilities, and those who did receive special education were educated apart from their peers, at an inappropriate level. The passing of IDEA was accomplished by the work of advocates who saw stark disparities in access to quality education for disabled versus non-disabled students. IDEA was also made possible by the Black community's fight for racial desegregation in the education system and their victory in the 1954 Supreme Court ruling in Brown v. Board of Education. This landmark case set a legal precedent to challenge the “separate but equal” argument for segregated schools, and was later applied to the case for equal access to education regardless of ability status. Even after Brown v. Board, racially segregated education was still maintained under the guise of integration by way of educators who systematically designated Black students with special education needs, thus removing them from their white peers in general education classrooms. Presently, the racial coding of "disruptive behavior" operates similarly as a mechanism that actively enables disproportionate punishment and incarceration of disabled and/or BIPOC students at underfunded schools. the "all-in" model and futures of access in education Cox Academy is an elementary school located in Elmhurst Park, one of the poorest neighborhoods in East Oakland. Through a federallyfunded partnership with Seneca Center, Cox became the pilot site for a new approach to supporting students by "reimagining an entire school ecosystem". The "All-in" model challenges the traditional role of educators who are trained to teach in general education classrooms but are overall unequipped to address the trauma that students experience outside of the classroom, which poses a significant barrier to academic engagement.

In this novel structure, a general education teacher, a special education teacher, and two counselors are present in a classroom for one year, during which they work to identify students' needs and build instructional capacity for general ed teacher. After that year, all members of the team except for the general ed teacher then rotate into another classroom and work with a new general ed teacher. Psychologists, counselors, social workers, and learning specialists are also staffed at the school as readily available resources for classroom support. 81% of Oakland Unified School District's special education budget goes towards off-site, non-public schools, where it costs $75,000 to educate one child with a behavioral and/or learning disability. Meanwhile, adopting the "All-In" model at a public school costs $1,052 per student. This type of program is not only feasible but extremely sustainable as well; by ensuring that a broad range of services are in place to meet students' mental, emotional, and academic needs, Cox doesn't need to "concern itself so deeply with the line between students with disabilities and students without" (Hing, 2014). This distinction becomes less critical when disabled students who may not have an official special education designation are still adequately supported. Seneca Center and its partner schools understand the need for intervention for students who are vulnerable targets of the school-toprison pipeline. Furthermore, the philosophy underlying this model reinforces disabled students' right to an equitable quality of education alongside their peers. Providing these resources and accommodations benefits every individual, disabled or otherwise, and it is a promising example of how communities of learning can act from a place of prioritizing access and healing, while rethinking the roles of teacher and student as dynamic and personal ones. Sources: Ballentine, Kess L. “Understanding Racial Differences in Diagnosing ODD Versus ADHD Using Critical Race Theory.” Families in Society 100, no. 3 (March 18, 2019): 282–92. https://doi.org/10.1177/1044389419842765. Hing, Julianne. “Race, Disability and the School-to-Prison Pipeline.” Color Lines, May 13, 2014. https://www.colorlines.com/articles/race-disability-and-school-prison-pipeline. Mader, Jackie, and Sarah Butrymowicz. “Pipeline to Prison: Special Education Too Often Leads to Jail for Thousands of American Children.” The Hechinger Report, October 26, 2014. https://hechingerreport.org/pipeline-prison-special-education-often-leads-jailthousands-american-children/. Zipper, Erin. “Infographic: From Disability to Criminality,” May 13, 2014. https://www.colorlines.com/articles/infographic-disability-criminality.

DISABILITY & SOCIETY knowledge production intelligence & IQ

state violence & incarceration (special) education criminality

normal/abnormal paradigm

neurodivergence

DISABILITY

ableism biopolitics

research

mental illness eugenics

disability rights & policy

medicine institutionalization

advocacy & activism

psychiatry

access & protections

interventions

"passing", masking, and the issue with functioning labels "Passing" In the context of disability, this refers to being able to "pass" as neurotypical or able-bodied by aligning with social norms for acceptable behavior. This could result from having a condition that is not immediately obvious, or by intentionally downplaying the influence of disability on one's life or identity.

Masking Masking is one way by which autistic individuals might "pass" as neurotypical. This is a social imitation strategy that entails "hiding one’s [autistic traits] and developing different personas or characters to use during social situations." For example, this could include attempts "to minimize their self-soothing or ‘stimming’ behaviours, and their responses to sensory overstimulation, in order to make their condition less obvious to others." (Hull et al., 2017)

Who masks? The majority of studies on autism have focused on understanding behavioral characteristics in male subjects. The disproportionate concentration of studies on males with autism may partially explain why 1 female is diagnosed with ASD for every 4-5 males who receive the diagnosis. There is substantial evidence indicating that women present autism differently from men, including being 4 times more likely to mask and show great social interest. Thus, women tend to go undiagnosed, or get diagnosed with ASD much later in life than men do. 50% of boys with autism are diagnosed before age 11, whereas only 20% of girls are diagnosed before this age (Egeskov, 2019).

A small but growing number of studies indicate that a significant portion of the autistic community identifies as genderqueer, non-binary, or transgender. Overemphasizing differences between autistic males and females, as well as age of diagnosis, then, can be limiting for several reasons. Policies, resources, and diagnoses informed by research exclusively on binary genders will never capture the broad range of experiences, forms of presentation, and needs of the autistic community. Masking is done by people of all genders; autism/disability and the gendering of bodies are both social experiences that exist within cultural contexts. "The stereotypical narrative suggests that for someone like me, who was diagnosed on the autism spectrum as an adult, childhood was a missed opportunity for early intervention and that without state-sanctioned services, I am a mess." - Emily Brooks, writer, activist, and Disability Studies scholar

It is valuable to note disparities in diagnosis; however, if the only goals are achieving early diagnosis and intervention during childhood, this reinforces the harmful idea that disability is a tragic circumstance that will cause great suffering if not diagnosed right away. This rationale is also consistent with the medical model of disability, in which the individual is reduced to a patient and medicine/therapy becomes the primary (or only) solution. While formal recognition of disability often means the right to certain services will be guaranteed, this focus on age of diagnosis diverts attention away from the overwhelming lack of services available to autistic adults. It also overlooks the fact that other systems of (informal) support exist, and necessitates that a diagnosis is the only way disabled people can access the same types of therapies and support as someone with a diagnosis (Brooks, 2015).

Consequences of (un)masking

Because masking places a severe strain on cognitive energy, autistic individuals who mask often experience sensory or emotional overload, which can then cause meltdowns, regression (lower capacity for executive functioning), and long-term anxiety and/or depression. On the other hand, unmasking is not an option for everyone, particularly Black communities, whose presentations of disability are more often than not, met with violence. RUA MAE WILLIAMS

“This concept of invisible disability is really […] it’s kind of misguided. The truth is that people might not always know what it is, but when they interact with me, they immediately clock me as uncanny. And they don’t always even realize that, but the way that i get treated is implicit and inherent and immediate." "I talk about disclosure as activism, and I do it too as a sort of pre-filtering. So if i’m, like, belligerently out, you know—autistic, nonbinary—it pre-filters. I’m not going to be approached by people who will eventually do violence to me as often […] so when you’re really aggressive with your identity, it pushes that violence away.” AN INDIVIDUAL'S RELATIONSHIP WITH MASKING IS OFTEN DETERMINED BY THE WAYS IN WHICH THEIR MULTIPLE IDENTITIES ARE POSITIONED IN SOCIETY AND THE LEVEL OF SAFETY AFFORDED BY THE VARIOUS PRIVILEGES THEY HOLD.

@NEURODIFFERENT ON INSTAGRAM

"We must always respect those who choose to continue to mask their autistic traits, no matter what we perceive their context to be [...] Having the circumstances to unmask safely as an autistic person is a privilege." “Black autistic people rarely have the luxury of being able to unmask. For many, masking their autistic traits is quite literally a matter of survival in a society where being Black and behaving in a matter that deviates from the 'norm' can be a death sentence. When we advocate for autistic people to be able to take off their masks, we must be fighting to dismantle the system that forces autistic people to mask in the first place"

Functioning Labels

One way that disability becomes stigmatized is through the misguided usage of functioning labels to make distinctions between levels of "severity" for various forms of neurodivergence. The terms "high functioning" and "low functioning" are commonly used to describe individuals with autism, depression, bipolar disorder, schizophrenia, and other mental illnesses. This language, however, is incredibly harmful to neurodivergent individuals, and does not serve any useful purpose to the people who are on the receiving end of either (arbitrarily defined) label. Autistic people might be labeled as "low functioning" because they are nonverbal (or less verbal), struggle with socializing, sensory processing, or do not conform with social norms in some way. In this group, co-morbid conditions such as Fragile X syndrome, tuberous sclerosis, and epilepsy are common. "High functioning" autistic people are described as such because they are more able to pass as neurotypical or high-performing, particularly in professional and educational environments. "High functioning" versus "low functioning" creates a false dichotomy for the experience of neurodivergence. Although these terms are not used within the medical system, they reinforce understandings of individuals' needs based on which traits are seen as valuable, or at the very least, acceptable under the medical model of disability. Describing someone as "low functioning" reduces them to the fact that they might be, for example, nonverbal, while their high IQ or creative talents go unacknowledged. This language might also be used to justify interventions that deny the individual of consent or autonomy. Meanwhile, believing someone does not need intensive structural supports because they appear "high functioning" erases the non-visible challenges they experience, overlooking the massive burden placed on that person to perform an illusion of wellness. This language, then, perpetuates denial and stigma around neurodivergence by collapsing individualized experiences into stereotyped narratives. Sources

Brooks, Emily. “Focus on Autism Must Broaden to Include Non-Binary Genders” October 19, 2015. https://www.spectrumnews.org/opinion/focus-on-autism-must-broaden-to-include-non-binary-genders/. Egeskov, Charlotte. “The Art of Masking: Women with Autism,” March 8, 2019. https://www.tiimoapp.com/blog/art-of-masking-women-with-autism/. Facebook. “Talks on Disability: Meet Rua Mae Williams,” May 28, 2020. https://www.facebook.com/lakeshorefoundation/videos/338758177106140/. Hobbs, Katherine. “Low Functioning Autism - What Sets It Apart, Ultimate Guide.” Autism Parenting Magazine (blog), August 2, 2017. https://www.autismparentingmagazine.com/low-functioning-autism/. Hull, Laura, K. V. Petrides, Carrie Allison, Paula Smith, Simon Baron-Cohen, Meng-Chuan Lai, and William Mandy. “‘Putting on My Best Normal’: Social Camouflaging in Adults with Autism Spectrum Conditions.” Journal of Autism and Developmental Disorders 47, no. 8 (May 19, 2017): 2519– 34. https://doi.org/10.1007/s10803-017-3166-5.

on disability, self-advocacy, and ableism: an interview with izzy davis How do you identify in terms of your relationship with disability ? Izzy: I have a mobility disability and currently it's more invisible than it was when I was younger. But I do walk with a limp and I wear orthotics on my legs to help me walk. And I will use a wheelchair if it's a long distance, but I grew up in and out of a wheelchair, using a walker. It used to be completely paralyzed from the hips down and then over time I regained partial use of my legs. Now I'm partially paralyzed and basically, it occurred as a result of a really rare condition that I had when I was twoâ&#x20AC;&#x201D;it's called transverse myelitis. So I've experienced both sides of it. I had a very visible disability when I was younger, that people could see as soon as they looked at me [...] but as I've grown and sort of plateaued with my recovery, people who don't know me well, don't often know that I have a disability because I've gotten really good at hiding it for the most partâ&#x20AC;&#x201D;but I try not to hide it anymore. I did when I was younger, in high school, 'cause there's more shame around it, but now if someone wants to ask me or is curious, I'm completely open. Has the visibility of your disability changed the way you self-advocate or go about getting your needs met ? Yeah. When it was more visibleâ&#x20AC;&#x201D;also I was younger, so I had my parents just advocate for me all the time. So I could kind of take this passive role and I had a disability, but it didn't consume my life [...] But as a grew up, I really started having to almost justify myself when asking for accommodations because it's like, I mean, people tell me all the time, Oh, you don't look disabled. Why are you inquiring about these accommodations? Or maybe they wouldn't often say that, but it was implicit. And you kind of have to take on that emotional labor of explaining yourself to people. And my story is really complicated too, because it's this really rare condition. And I don't know, the fact that I recovered partially was weird, 'cause you can't really fit me into a paraplegic box, but you can't fit me into an able-bodied box [...] and I've had a lot of complications that have resulted from it, but aren't related to paralysis. So it's really complicated and having to explain it to people, sometimes I'm just like, Yeah, I'm partially paralyzed.

Have you navigated the accommodations system at Pomona ? So when I went into Pomona, it was a bit frustrating because the person in charge of disability accommodations was also a Dean of Students [...] And it was just kind of confusing and it worked out great—like, I ended up getting housing that fit my needs and then some. I think there was actually some miscommunication and they ended up giving me a bathroom, which is awesome, but I don't necessarily need a bathroom for my disability. They recently hired a [disability coordinator] named Mace who's really great at her job [...] And she's done a lot of great work to streamline the process and make it so our online system is way easier to use [...] And just having a go-to person for disability concerns has been really great. So I think they definitely made the right choice in hiring a new person and making it a whole role. So I'm hopeful. Could you talk about the work you've done through ASPC ? It was last year—I was the Director of Disability and Mental Health Advocacy, which was a lot of stuff to cover [...] Mainly my role was obviously advocacy, speaking to different student groups, trying to figure things out. And my main goal was to set up a disability affinity group within Pomona that's institutionally backed like AAMP or OBSA or CLSA or ISMP [...] So I'm working with a couple other students and we're trying to get a Pomona-based affinity group that gets funding from Pomona and not from ASPC, because I think people have tried in the past to set up Pomona disability affinity groups, but because they're club-funded, as soon as someone graduates who is really into it, they usually go away and then [...] it can't have that legacy. Do you think disabled students are not seen as a group that needs more institutional support? I think the thing about disability—it's very diverse within the group [...] the experiences aren't necessarily shared, like there are some universal experiences, but someone who's in a wheelchair is going to have a way different experience than someone who's deaf. So people kind of see it more as a health thing and less of a human rights or social justice thing. It's like, Oh, that's just medical stuff. Like, we can't talk about that. So because it's not really a monolithic group, I guess people can kind of assume that, Okay, we get your accommodations covered. Like, you'll be fine then, but you don't need community. You don't need people who have similar experiences that you can surround yourself with.

(continued) Because if you could just have people to help you advocate for yourself or learn how the accommodations process works, or learn how to speak to admin about your problems, how to speak to professors if you need to push back against certain policies [...] So that's what we wanted to create. Something that could be like an organizing force, but also a community where we can get to know each other. 'Cause that's the whole point of an affinity group, we've seen other affinity groups like FLI and they've advocated for a lot of really great policies that have impacted all students. And that's especially true with disability advocacy, usually changes that are made in favor of being less ableist and more open to disabled people actually benefit everybody, which there's a huge history with [...] You've probably heard of the Curb-Cut Effect where, basically, it was in the sixties or so; a group of disability rights advocates were arguing for curb cuts. You know, like the ramps that go into the curbs, so people with wheelchairs could easily access streets. 'Cause normally they had to have someone carry them up the curb. And so it turns out that curb cuts help a lot of people, like people on bikes, people on scooters, people who are skateboarding, people have strollers, so things that help people with disabilities usually actually improve the quality for everyone. Cause even if you don't necessarily identify as someone with a disability, you could still benefit from more flexible policies with grading and turning things in and taking leaves of absence and all these things that are now more commonplace because everything's online.

Could you talk about what you've observed in the campus culture in terms of awareness around access and disability ? When you get accommodations, that's seen as, Oh, you get extra stuff and I don't get that. So people see it as me getting almost extra things when in fact it's just like, trying to level the playing field so I can access the door really easily and go outside and not be late for class or not have to go up and down the stairs all the timeâ&#x20AC;&#x201D;which is just small things, but when you have a disability, that really adds up [...] then you feel guilty and you're like, am I not disabled enough? Like, do I deserve this? And then that makes you less likely to ask for help.

(continued) I have had friends that have had professors that were not as understanding and some of them have asked for proof and doctor's notes. And I don't know, I feel like when you start to question people with disabilities, it's kind of offensive, like that they assume you're not telling the truth and that you're just trying to freeload or something. Do you think that attitudes around the legitimacy of accommodation needs vary across different types of disability ? Yeah, I think so. I have a friend who has a chronic autoimmune disorder, and so her disability is not visible at all, but it does affect her energy levels throughout the day. And she just sometimes just feels so sick [...] when you talk about having chronic illness or autoimmune disorders, it's very, people don't know what to make of it. So they're like, Oh, they're just lazy. They just sleep all the time 'cause they're lazy. Or they want all these extensions because they're procrastinating and they're actually just not good students. But they were in a ton of pain and couldn't get out of bed and couldn't even think about doing work. And so in that case, I've definitely seen kind of, the extreme of it where she's had professors that just have been not accommodating at all. 'Cause you don't want them to have to prove themselves with doctor's notes, but sometimes it's all you have to really back up your case. But I don't think you should have to argue with professors, or even have to disclose the reason, you know, 'cause some people aren't comfortable with it. I've gotten to the point with my mental health and my acceptance of my disability that I'm fine with it, but I know some people are not there yet. And that's totally fine, they don't have to talk about it if they don't want to [...] cause it can be super tiring to have to explain your situation.

"The disabled Cherokee scholar and poet, Qwo-Li Driskill, I remember hir saying once, 'You know, in the Cherokee language pre-European colonization, there were all these words for disabled bodies, and none of them were negative. Theyâ&#x20AC;&#x2122;re just different ways bodies are.' So, in my decolonized disability justice future, I want worlds where there is no one right or wrong way to have a body. I cannot wait for that world, and I cannot wait for the sick and disabled, neurodivergent, and deaf folks who grow up in that world, where they have only been known as gifts and as treasures, and as being able to be complicated, imperfect people who have what we need to thrive. Yeah, that one. I want that future."

- Leah Lakshmi Piepzna-Samarasinha

RESOURCES* Blogs, Podcasts & Books by Disabled/Neurodivergent People Lydia X. Z. Brown - autistichoya.com Imani Barbarin - crutchesandspice.com Mia Mingus - leavingevidence.wordpress.com Nick Walter - neurocosmopolitanism.com Manuel Díaz - neurolatino.wordpress.com Black Disabled Men Talk (podcast) - blackdisabledmentalk.com/blog-feed/ Care Work: Dreaming Disability Justice by Leah Lakshmi PiepznaSamarasinha All the Weight of Our Dreams: On Living Racialized Autism, an anthology published by the Autistic Women and Nonbinary Network Exile and Pride: Disability, Queerness, and Liberation by Eli Clare Community Organizations The Autistic Women and Nonbinary Network, a national nonprofit advocating for autistic women, girls, nonbinary people, and all other autistic people of marginalized genders. Project LETS, a peer-led community supporting individuals with mental illness, disability, and/or neurodivergence. Sins Invalid, a disability justice-based performance organizing project by and for disabled LGBTQ artists of color. ADAPT, a national grass-roots community that organizes around disability rights by engaging in nonviolent, direct action. Disability Visibility Project, an online platform (and podcast) centering disabled people's stories and culture, founded and directed by Alice Wong. Disability Justice Culture Club, a collective of disabled and/or neurodivergent QTBIPOC, based in East Oakland. Foundations for Divergent Minds, an organization founded by autistic and neurodivergent people, that offers neurodiversity-based trainings. 5C Resources Student Disability Resource Center (SDRC) > Disability Coordinator(s) for each campus listed on SDRC site Disability Illness and Difference Alliance (DIDA) 5C Mental Health Alliance Monsour Counseling and Psychological Services (MCAPS) *List not comprehensive

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