Sparrow Rose Jones

[image description: Sparrow Rose Jones at the podium. A smiling white transmasculine person with metal-frame glasses, short dark hair, a dark red button-down long-sleeved shirt, jeans, and a black belt with silver buckle. Photo credit: Dr. Evelyn Chiang]

This presentation was delivered at the University of North Carolina’s Fourth Annual Disability is Diversity Week celebration, on Wednesday, November 9th, 2016 in Asheville, North Carolina

content warning: mention of suicide

Thank you for having me here this week to share in your celebration of disability as diversity. I travel all over the country and I have quickly grown to love Asheville and this university for setting such a shining example to the rest of the country when it comes to opportunities for Autistic people and their families.

Let me start by telling you a little bit about myself and why I am talking to you today about neurodiversity, the diversity of human minds, and the crucial role universities play in fostering and supporting diverse minds both in academia and in the world at large. I’m Autistic. In a perfect world, my telling you that would not be much different from my telling you that I’m white, 49 years old, a musician, or a nature-lover. It’s a fact about who I am.

Being Autistic means that my nervous system, including my brain, is wired differently. Some of my senses, like hearing, are tuned so high that the world can be a painful place for me. Other senses, such as my proprioceptive sense — that is, my sense of where my body is located — are tuned so low that I have to move around a lot to feel comfortable. That’s just one small sample of the ways that my body and mind respond to the environment differently. My nervous system has a wide variety of interesting twists and turns and some of those twists can vary from day to day or even moment to moment. Each Autistic person has their own interesting nervous system and that’s why we can be so different from one another in so many ways yet all be Autistic.

As a child, I had a lot of difficulty with school. I wasn’t getting adequate support and so I tended to be disruptive in class, trying to get the sensory input I needed for those senses that were turned on low and trying to escape the sensory inputs that were too intense for me to handle. Any of you who have worked with Autistic children know what kind of challenges I was up against, not to mention the challenge I presented to my teachers. Those were less enlightened times and it can fairly be said that I got an education in spite of school rather than because of it.

We still have a long way to go, but our understanding of autism has evolved and more and more Autistic children are getting good educations as they grow into Autistic teens. More and more Autistic young adults are graduating high school and seeking a university education. This is a terrific turn of events and universities are scrambling to set supports in place to help neurodivergent students succeed in college.

Neurodivergent? Some of you will be very familiar with that word while others have never heard the word before and are figuring it out through context. Neurodivergent is just what it sounds like: some people, like me, have minds that diverge from the mainstream. We are neurodivergent. You might have heard the word neurotypical used to describe people who aren’t autistic? Today I want to talk about the importance of supporting neurodivergent students — all those students who are not neurotypical.

Although I am Autistic and autism is the neurodivergence with which I am the most familiar, both because I have lived Autistic for 49 years but also because I have hundreds of friends all over the world who are also Autistic, autism is not the only neurodivergent neurotype.

All these neuro- words! The root of these words is Neurodiversity, the main word in the title of my presentation today — Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds. I want to unpack that word a little bit because understanding what neurodiversity is (and is not) will help you understand why it is, or should be, such an important part of the university mandate.

There are three different but interconnected things I can mean when I use the word neurodiversity:

First, neurodiversity is simply a biological fact. We all have brains and all our brains have variations. We might use a word like “neurotypical” or talk about “the neuromajority” or even say things about “the average brain” or “a normal brain” but hopefully most of you realize that there is no such thing. Everyone’s brain is different from everyone else’s brain in ways both subtle and significant. Those of us who are identified as neurodivergent have more significant variation from the majority, but all brains differ and thus the word “neurodiversity” is a word that describes every one of us.

This is neurodiversity as a simple, undeniable, scientific fact. All of nature supports diversity and we have noticed that our natural environment thrives best when we work to preserve biodiversity. The world of ideas is not dissimilar from nature and universities have fostered a spirit of fearless inquiry and seek to create a sanctuary for human knowledge and wisdom. More on this notion of intellectual diversity and its intersection with neurological diversity shortly.

A second meaning of the word is found in the phrase “the neurodiversity paradigm.” The neurodiversity paradigm is a philosophical approach to the biological fact of neurodiversity. The neurodiversity paradigm holds that neurodiversity is not only a natural trait of human existence but that this diversity of minds is a valuable attribute of our species. The neurodiversity paradigm maintains that it is wrong to value one type of brain above another because each has its particular benefits and contributions. Just as we would rightfully cringe at the thought of determining which gender, religion (or lack thereof), or ethnicity is the best, the neurodiversity paradigm instructs us to stop playing favorites with brain types and seek instead to foster all that is great about every brain and every human being in whom those brains dwell and for whom those brains and their larger nervous systems serve as the seat of thought, feeling, will, perception, and identity.

A third meaning of the word neurodiversity is political: “the neurodiversity movement.” The neurodiversity movement, which was born in the Autistic community but exists to serve and support all neurologies — particularly those of fellow neurodivergents such as people with ADHD (many of whom have chosen to identify as Kinetics to escape a pathologizing label), dyslexia, anxiety, bipolar, schizophrenia, and more — is a political movement seeking justice and equality for all those “differently-brained” people in every sphere of society, including the university.

So neurodiversity is a biological reality, a philosophy about that reality, and a political movement informed by that philosophy.

Now back to the mandate of the university and why I posit that upholding the neurodiversity paradigm – the philosophy that all brain types are valuable – is, or should be, part of that mandate.

Over 160 years ago, John Henry Newman wrote a book many still value today for the way he explained and defined the concept of a liberal education, “The Idea of a University.” In that book, Newman explains why it is important for a university to offer areas of study that still garner criticism today, such as the humanities. Although it is a major point to be criticized, many still study liberal courses at universities such as Rutgers University.

“it is a great point,” he wrote, “to enlarge the range of studies which a University professes, even for the sake of the students; and, though they cannot pursue every subject which is open to them, they will be the gainers by living among those and under those who represent the whole circle. This I conceive to be the advantage of a seat of universal learning, considered as a place of education. An assemblage of learned men, zealous for their own sciences, and rivals of each other, are brought, by familiar intercourse and for the sake of intellectual peace, to adjust together the claims and relations of their respective subjects of investigation. They learn to respect, to consult, to aid each other. Thus is created a pure and clear atmosphere of thought, which the student also breathes, though in his own case he only pursues a few sciences out of the multitude.”

What Newman is describing could be called academic diversity or intellectual diversity and you will be hard-pressed to find academic faculty who believe a university should narrow its range and exclude wide swaths of intellectual disciplines from the educational menu offered to students and, by extension, to the world at large. At one time or another nearly every discipline universities embrace has been threatened with extinction by legislative budget cuts coming from outsiders unable to recognize the immense value that comes from art history, philosophy, musical performance, political science, theoretical mathematics, foreign languages, even English. Economic pressures and political forces focused more on everyday pragmatism than on the sort of creativity and innovation that fires the human spirit to ever higher achievements seek always to convert universities from temples of knowledge to cookie-cutter vocational pathways.

Universities resist this attempted narrowing of the collective mind every day. Yet what of the narrow range of the types of minds welcome to engage in this Great Conversation of universal learning?

Not only is there a place in academia for a wide range of minds, including those which diverge from the dominant majority of neurotypes, but the university needs neurological diversity in order to thrive and grow.

All great thought and innovation has benefitted from diversity of one form or another. African-American minds brought us the blood bank (Charles Drew), open-heart surgery (Dr. Daniel Hale Williams), an understanding of bioluminescence (Emmett Chapelle), the traffic signal (Garrett Morgan), the gas mask (Garrett Morgan), the synthesis of medicinal drugs from plants (Percy Lavon Julian), not to mention the literature of Maya Angelou, James Baldwin, Octavia Butler, W.E.B. DuBois, Ralph Ellison, Langston Hughes, Malcolm X, and so many more.

We celebrate the accomplishments of so many brilliant minds of people from various sexual and gender minorities such as Alan Turing, John Maynard Keynes, Margaret Mead, Florence Nightingale, Oscar Wilde, Willa Cather, Emily Dickinson, Eleanor Roosevelt, Leonard da Vinci.

Accomplished and brilliant women are far too numerous to name, but a few of my favorites include Emmy Noether, who developed much of the mathematical modelling of Einstein’s theory of relativity, Rosalind Franklin, whose x-ray photograph of DNA revealed its helical structure to Crick and Watson, Jocelyn Bell Burnell, who discovered pulsars, Chien-Shiung Wu, who disproved a law in physics, the law of parity, that had been believed for thirty years prior to her work, Nettie Stevens, who discovered X and Y chromosomes.

I’m sure most of you are familiar with the Autistic agricultural scientist, Temple Grandin, and realize that it was her innovative work that is revolutionizing the cattle slaughter industry, making it simultaneously more efficient and more humane.

There are so many more great neurodivergent thinkers: John Nash won a Nobel prize for his work with game theory. Vernon L. Smith won a nobel prize for his work in experimental economics. Michelle Dawson has conducted great work studying cognition and perception in autism. Charles Dickens wrote classics of literature still lauded over 100 years later. Franz Liszt, Vincent Van Gogh, Scott Joplin, J.D. Salinger, Kurt Godel, Max Weber, Sylvia Plath, William Styron, Georg Cantor, Robert Pirsig, Jean-Jacques Rousseau, Joseph Pulitzer, Charlotte Perkins Gilman … surely I have convinced you of the value of fostering the creativity and innovation that comes from neurodivergence by now?

But it’s easy to value neurodivergence after the great achievements. As novelist and poet Marge Piercy wrote:

“Genius is what they know you / had after the third volume / of remarkable poems. Earlier / they accuse you of withdrawing, / ask why you don’t have a baby, / call you a bum.”

It is crucial for the university to embrace the neurodiversity paradigm because not all genius can prevail against social stigma and unaccommodated barriers of disability. Jack Kerouac, with schizophrenia, produced brilliant work but drank himself to death. Sylvia Plath, with recurrent depression, produced brilliant work but ended her life by putting her head in the oven. Virginia Woolf, bipolar, produced brilliant work but ended her life by loading her pockets with stones and walking into the ocean.

Two months ago, Rex Morgan, an 8-year-old Autistic boy was stopped by his mother during a suicide attempt. He explained to her that life made him too anxious and “being asleep is better than being awake.” His mother saved his life but he is part of an estimated 30 to 50 percent of Autistic people who have considered, attempted, or completed suicide. Life is often difficult to bear for those who are wired differently from the majority when support and accommodations have to be fought for as if they were special privileges.

The barriers faced by neurodivergent people are massive but not insurmountable. And the creativity and fresh thought neurodivergence can bring to universities must be fostered and supported through accommodations and opportunities designed to help break down those barriers and nurture the spirit of those whose greatest pains and greatest joys can come from the same source: their divergence from the mainstream.

You may ask yourself, “university funding is already threatened on all levels and from all directions. Where will we find funding for special treatment for these different minds?”

And if you do, I will tell you that you are asking the wrong question. Accommodations are not special treatment; they are investments in society. It was North Carolina’s own Ronald L. Mace who pioneered the concept of Universal Design: the concept of creating architectural structures with all people of all ages and abilities in mind. Mace believed that good design accommodates everyone and helps to eliminate stigma and ableism by viewing access as a basic human right and disability as an aspect of human diversity.

Mace devoted his life and his work as an architect to educating us all that accessibility accommodations benefit everyone of every level of ability. He worked to build a world everyone could participate in and found great success in that work, including the accessibility of the Capitol Building and the Kennedy Center in Washington, D.C.

It is time for Mace’s vision to be extended to neurological disability. Remember: the accommodations and supports that will help increase the neurodiversity of academia are not expensive “special needs” efforts that only benefit a few. Universities can and must develop accommodations that help all students to succeed in their studies and in their lives.

What student would not benefit from a strong counseling program? Who has not yearned for a designated quiet space to decompress after a stressful day? I’ve seen universities bring therapy animals to designated areas during midterms and finals week for all students to pet and hug. The arboretums, gardens, and landscaping of many universities are encouraged as much for their effects on the human spirit as for their educational value.

I am not suggesting that we sacrifice rigor or intellectual discipline in our universities, but rather that we surround our academic exploration and inquiry with an inclusive environment and a culture of acceptance and mutual assistance in which bullying and ostracization have no place.

I am calling for a university culture in which those who move and communicate and think differently are valued and welcomed as vital participants in the life of the mind and service to the world that the university has long fostered and promoted.

I charge all of you to do your part in creating an academic environment where there is no single right way to come to answers and solutions and where different ways of gathering information, processing ideas, communicating thoughts, and synthesizing knowledge are not just valued but actively supported and not just for neurodivergent students, but for all students. There is no room in the university for prejudices against academics whose minds differ in ways large or small. We are all on the same journey of discovery and stretching the limits of human understanding. Let’s make a point of finding every way to be kind to one another on that journey and help one another over and around the access barriers we stumble across on our way from here to the infinite realms of human potential.

Yes, neurodivergent students will often still need additional accommodations such as: quiet areas for testing, alternate methods for communicating answers in class or on tests, extra time for processing and recording answers for tests, visors to shield their eyes from harsh overhead lights, help with time scheduling, support for self-care needs, supported living arrangements on campus, a guarantee of all important communication being provided in written form, and many other accommodations too numerous or too individualized to list here.

Accommodations are a small investment for the return society sees from encouraging thought, communication, and problem-solving from those who bring such fresh vision to the table. And the alternative to accommodating those who are eager and capable of university-level work with reasonable support is to leave valuable human beings — and have no doubt: all human beings are valuable — excluded, isolated, and discarded. How many lives have been wasted or even lost because of the limiting fears, stigmas, and false beliefs of others about what a mind like theirs is truly capable of?

What’s more, excluding neurodivergent students from academia, whether intentionally or inadvertently, deprives other students who could have benefitted from sharing intellectual insights with others who think and view the world differently from them? We encourage foreign exchange programs because exposure to minds of students from other countries broadens us all. Let us encourage greater neurodiversity in universities so that, to re-visit Newman’s words, students can learn ‘to respect, to consult, and to aid each other, creating a pure and clear atmosphere of thought.’ When neurodivergent minds are effectively denied access through a lack of sufficient support and accommodation, everyone loses.

When we approach university with a truly collegial spirit, we all win. If you want your university to be better than ever, look at the barriers laid before neurodivergent students and potential students and work to dismantle them, creating a truly universally accessible university where creativity and innovation can thrive, thanks to a meeting of the minds …. All minds. It is time for the university to become an intellectual ecosystem that understands the deep value of fostering neurodiversity.